Forward We Roll

Just taking a break....

2012-01-25T09:55:00.000-08:00

I've had a few phone calls and emails about why I haven't posted in a while. Its certainly not for a lack of stuff going on. In fact, I have sat down and starting several posts in the last few weeks only to save them as drafts or delete them altogether. I just can't seem to put what's in my head and heart in words that make much sense as of late. So for now, I am taking a break.

Resolutions

2012-01-04T10:55:00.000-08:00

As its the new year, inevitably its time to make some new resolutions or goals. I heard someone on the news today talking about how to give you a better chance at achieving your goals. One of the suggestions was to declare them publicly, so here we go.....

1. Organize. Pretty much all of last year was spent surviving each day so you can imagine the state of our basement and closets. My goal for January is to go through both and make several trips to D.I. I have been saving the boys clothes and baby clothes for years as they would get passed down. Its time those clothes found new homes outside of my own. Each month I think I will pick a part of the house to reorganize.

2. Figure out a system for the countless papers that walk through my door each day. I have a couple ideas I'm willing to try, we'll see what works the best.

3. Get our credit card paid off in the next 6 months. I was talking to someone recently about this and they mentioned that it must be difficult to pay off all the hospital bills. Early last year I felt impressed to make a yearly budget. For the most part it was pretty accurate. Of course I didn't realize the extent of our medical expenses at the time but because I mapped everything out we were in a much better place than had we not. Even with all the medical bills I think we would have been fine, what I didn't anticipate was the $1000 a month we spent in gas for our cars traveling to the hospital and the double food budget the months I was on bed rest and spending days at the hospital. That for the most part went on the credit card. Combine that with the medical bills and you can guess that our credit card has seen waaaaay too much activity for my liking this year. Even still, some would say that what we owe is not very much considering our year, but for me if that bill can't be paid off each month I tend to hyperventilate just a little. I have started tutoring again to help and much to my kids dismay we are cutting back in a few other areas as well. The sooner we can get that paid off the better!!!!

4. Eat healthier. We have fallen into the trap of fast and easy meals this last year that are not always the healthiest. Now that I am home more we can get back to planning out our weekly menu and cut all the junk that has found its way in the door.

5. Nuture the soul. I don't quite know how to phrase what I'm thinking so that is the best I have come up with. Since the days in the hospital with Aaron I have less tolerance for noisy TV's and radios. I find I read so much more now given that I was reading at his bedside for so long. I am constantly searching for things to read that uplifts. Sometimes I'm in the mood for deep spiritual journey's through my reading but mostly I just want to read light things that make me happy and don't force my battered brain to have to think too much. That may change in the future but for now, just give me happy and light.

6. Search for the Joy. I have found that I have built some walls up inside to protect me from different things. I know they are there and for now just knowing the walls are there is work enough. Eventually I will begin to take them down, when I'm ready. At least that is what I tell myself. I was talking to a good friend right before Christmas who has also lost a child, she has been a lifeline these last few months. She made a comment to me that I loved. She reminded me that whatever heartache we experience here the Lord will be multiply it in joy. I am searching for that joy. Sometimes its hard to find but I know its there if we but make the effort to look. My #1 goal this year is to search for joy.

Merry Christmas Aaron

2011-12-25T15:44:00.001-08:00

After attending church this morning we headed over to wish our little one a Merry Christmas. Ben said what we all felt in our hearts, "I wish Aaron could have been with us at home this Christmas!" Singing and reading about the Christ child brought tender feelings to the surface as we celebrate His birth and ministry amongst us. We are ever grateful for his teachings and love. Merry Christmas to all!

Dry Creek Pediatric Dentistry Rocks!!!!

2011-12-15T14:25:00.000-08:00

I just got a call from our kids dentist's office. They were having a contest on facebook for a nook and new TV. Apparently I won the TV!!!! Merry Christmas to Ronny!!! He has been wanting to get a new TV for a while but with all our hospital bills, that just wasn't in the budget.

So since we are the happy winners I will just take a minute to gush about how much we love the kid's dentist. Dry Creek Pediatric Dentistry is in Lehi and yes I am willing to drive 30 minutes to take my kids there through the most frustrating construction on the planet even though there are a ton of pediatric dentists right down the street because he is that good! That is how much we love Dr. Branton Richter. He and his staff are great with my kids and my kids cheer when I tell them we are going to the dentist. He does laser work which makes the kids getting cavities filled sooooo much easier. I also love that when I call for an appointment I can get all 4 kids in at once. How awesome is that!?! Dr. Branton is meticulous with my kids teeth to make sure they are perfect which is what you want in a dentist!

So if you are interested, go "like" them on facebook and enter the next drawing.

Oh What A Feeling

2011-12-10T14:42:00.000-08:00

So you know that feeling of dread when you find yourself heading to the Emergency Room for a loved one, or you get a phone call that something terrible has just happened, or you're waiting desperately for news of someone you care deeply for that has been in an accident, you know that panic feeling that if you let it go can get way out of hand, you get the idea right? That feeling for me hovers right between my shoulder blades and causes my muscles to tense up. I have lived with that feeling for most of this year, especially every time the phone would ring. (Even now the phone ringing still sends shivers through me sometimes). It really takes its toll after a while and at some point I just got used to it always being there.

Late last night we received a text letting us know there was a sweet someone in our family that needed some prayers. Our knees immediately hit the floor as was requested. When we were done I realized that terrifying feeling was back. I had to take a few deep breaths to calm myself down and put things into perspective. I realized that A: Somewhere in the last month or two that constant feeling must have gone away for it to be back now. B: If A is correct then I can deal with this now and it will eventually go away again. Even with those new realizations it still took until a text this morning sending news that everything was ok for that tension to release completely. I really hate that feeling!

Tidings of Great Joy

2011-12-07T14:39:00.000-08:00

My baby sister is getting hitched!!! We are very excited for her and her beau and my kids are thrilled to have another uncle. Between the two families she is the last sibling to get married (and the youngest so there was no hurry there). The sisters who were here (we missed you Jayme!) went to dinner last week and in short order started to volunteer for assignments like flowers, cake, and such. I wish I had a picture of her but I looked and I don't as she has been on a mission for most of the last two years. We love you Michelle!

"That Conversation"

2011-11-29T14:52:00.000-08:00

A month or so ago we were invited to the March of Dimes fundraiser in Salt Lake. Several chefs from around the area came and cooked a small sampling of their best and we tried lots of wonderful new dishes. The food was great, hands down had the best caramel apple ever there! We had been asked previously if a few of Aaron's pictures from our blog could be used for the event. We consented and were ready to hunt him down when we arrived. We did not have to look far, his picture was pretty much on every other table there. In the ballroom there was a large screen showing other pictures of him and the kids visiting the NICU. We ran into a few of his doctor's and nurses and NICU friends there and met several new people. I think because we knew a little of what to expect we were prepared for the emotions the night would bring.

This last weekend I ran into one of Aaron's nurses at Target. She literally jumped in front of me to say hello. It was nice to see her and meet her boys she had told us about. We had a nice conversation and she wanted to know how we were doing. Its these times when I'm not quite prepared for "that conversation" that I come home and need to have a "time out" to get myself put back together.

"That conversation" goes like this:
Them: Denise, how are you doing? Me: Fine or Good and you?, depending on the mood I'm in. Them: "How are the kids doing?" Me: They are doing good.
Then the big stuff comes.....
Them: "We/I were/was so sorry to hear of Aaron's loss." Me: "Thank you", because really, what are you supposed to say to that???
Them: "How are the kids dealing with their brother being gone?" Me: cringe, sigh, Just fine, thank you for asking (and me thinking, why do people ask these questions?)
Them: "How are you and Ronny doing since Aaron died?" Me: cringe again, "We're good or We're surviving."
At this point if I can find an out I take it (like having to chase down one of the boys or needing to get somewhere in a hurry). If not I do what I can to smile and get through it (like when someone you've never met in a very loud voice for the entire building to hear starts with those questions and you are totally cornered by your primary class waiting to get into the primary room, yeah it happens at the most awkward places).

My emotions as of late seem to be a little on the full side. Much more in the last few weeks. I don't know if its because the holidays are here and I had so hoped to have Aaron home for Christmas, or if its because I feel like I'm getting blind sided by something or someone every other day, or if its because the adrenaline from having to plan and prepare things for Aaron is finally gone, or large family events that seem to be going on every weekend. Maybe its a combination of all of it, who knows.

Ronny and I are planning to go visit his parents this next month. His Mom asked what we want to do while we are there. My response: Nothing! She laughed, and I told her I was serious, Nothing! I don't want to have a schedule, I don't want to be busy, I just want to have a place the kids can entertain themselves and I can just sit and watch them, or sleep, or read. I told Ronny I wasn't in the mood to go visit a million people or to have big family gatherings while we are there (as inevitably "that conversation" will be ongoing). He looked at me and said, "You are going to have to do that at some point." I told him I agreed, but NOW is not that "point" and that Aaron has only been gone 2 months, don't I get more time? He hugged me and told me I could have as much time as I wanted. What a smart guy!

Thanksgiving 5K

2011-11-24T09:12:00.001-08:00

This year we decided to run a 5k. My sister and her family ran too. Even my brother-in-law's mother walked with us, she was my Young Women's President growing up. She did a great job!!! Just after the start of the race Ben decided he wanted to run with Ronny and the boys who took off from the start. There was no way he would catch up to them, but there was no convincing him. I ran the first mile with him trying to explain this right up until we caught up with my nephew Nathan. The three of us stuck together for the rest of the race. We walked another mile and then I carried Ben the last mile. He whined the entire race! It took us about an hour to finish and other than the whining, we had a great time! The race benefited the Utah Food Bank and they earned aver $100,000 so we were happy to walk for a purpose.

A Day of Work is Good for the Soul

2011-11-23T16:08:00.000-08:00

Today has been a busy day. Got the kids off to school, had some much needed play time with Ben, headed to the store for the last bits of ingredients for tomorrow's feast, finished off Aaron's photo book, had a neighborhood full of kids in the basement again, finally got our bulbs planted (we'll see if I got them in too late this spring), and now its time to get dinner started. I still need to make an apple pie and cranberry sauce tonight. I think Ronny's Aunt and Uncle are also supposed to be stopping by at some point but I haven't heard from them. Its been a busy day but its been good.

I've been working on Aaron's book for several weeks now and every time I sit down to work on it memories flood my mind and its hard to control the tears sometimes. For the last few days I've had to set it aside just to get a little bit of peace. Having other work to do today helped with getting the book pretty much finished (other than one last edit) and allowed me to push through the emotions to get the other stuff done.

Dragon Award #2

2011-11-17T16:35:00.001-08:00

Sam earned the Dragon Award this month at school. He has an awesome teacher this year, she is doing wonders for Sam!

These photos are taken from my phone, I still haven't figured out all the settings I need to do to make it focus better. Ronny will have to show me how, he takes much better pictures with his phone. That or I can hunt down my camera I can't seem to find as of late.

Now I Lay Me Down To Sleep

2011-11-15T14:00:00.001-08:00

We were first told of this wonderful organization of photographers when I was admitted to the hospital for my first stay. This organization has a team of photographers on call at the hospital to come at a moments notice when a little angel passes. They volunteer their time to come and document the life of one so small to allow the families to have a memory of their little ones. The night Aaron left this Earth a kind member of this organization was called in. The ring that is shown in a few of these photos was given to me by the photographer along with a hand made blanket and bracelet. I now wear the ring around my neck replacing my wedding ring that hung there while Aaron was with us. Some of the photos are too personal even for this blog and will remain with our family. Here are a few photos of our last memories with our son.

Sam's Big Day

2011-11-13T17:01:00.000-08:00

Sam was baptized yesterday. We were all very excited, but no one as excited as him I would say. We had close to 40 people join us for his big day, unfortunately I didn't get a picture of everyone together. Once again the stake primary rep called me less than a week before the baptism and asked us to sing a musical number, this time I said no but volunteered to give a talk or prayer, seriously we don't sing!!!! She relented and assigned us a talk, she then said they knew we had a "youth" in our home and asked if she would be willing to give the talk. I laughed and said the "youth" in our home became a "youth" just the day before and that I didn't think she would be comfortable giving the talk just yet. She said she understood and would put me on the program.

Yesterday as I took my seat on the stand there was a woman already there and she turned to me and said, "I know you". I smiled and said that she did not look familiar to me but that I am a bit disconnected as of late. She then said, "I know that I know you, I have seen your face recently". Then she exclaimed, "I have taken your picture"! We quickly figured out she was the photographer that came to Ronny's family reunion this past summer. I obviously wasn't paying that much attention at the time. Her sister-in-law also was the photographer who took the photos at Aaron's funeral and she had been the one who edited them before sending them to us. (Ronny's mom and sister had arranged the photographer for the two events so her name wasn't even familiar.) We chatted for a few minutes and discovered her daughter and Sam were in the same class at school along with another child being baptized that day.

Although the winter weather rolled in it was a wonderful day. We are so grateful for those who took time out of their schedules to travel to be with Sam yesterday. Thank you also to all those who stood in the circle to confirm Sam, we are grateful for your examples and lending your priesthood power to his blessing.

A Reason To Be Thankful

2011-11-10T07:12:00.000-08:00

Last night we made our way over to the boy's school for parent teacher conferences. I had prepared myself for the "your child is not working to their potential" assessments and I was ready for the "cut us some slack" reply I was going to give. To my complete surprise the boys all had essentially straight A's (or 4's in our grade books). They also had excellent behavior marks, which is saying something considering where Ben started this year. (We had to have the "raise your hand before you answer" talks, the "don't throw things during centers" , and my favorite; "no kissing the girls in the assembly" talks! I have a feeling we'll have to have that talk more than once during his adolescent life.) Charley's conference is tonight and I expect much of the same as she is a our most studious child. I had to bite my cheek to hold off the tears.

I have been worried about them falling behind in school these last months and knowing I just couldn't help them more than what we were doing. They rose to the challenge and have worked hard. I know the Lord has picked up the pieces and has watched over them and given them strength and encouragement when I couldn't. I know many of those who have watched over my kids have helped them as well, thank you. In each conference I looked to each boy and told them how proud we were of them, each had that little sparkle in their eye and I knew they were just as excited to show us their hard work. I love my kids!

A Little More San Diego

2011-11-08T10:28:00.000-08:00

I just realized I didn't finish out our San Diego Trip photos from last month. We did do other things besides the zoo, and Sea World. We made a quick stop to visit my grandmother in St. George. I only remember one of my great-grandmothers and we always visited her in a nursing home. Our kids are lucky enough to still have one great-grandparent on each side of our families. These are trees just outside her home, they are great for climbing. I can't believe I didn't snap a photo of Grandma Joan though. What was I thinking??? (We hope to see both of our great-grandparents again in December and I will do my best to snap a picture of both of them).

On our way out of San Diego we decided to take the kids to where everything for our family started. The San Diego Temple was where Ronny and I were married. It was a little chilly and a little foggy but its still one of my most favorite places to be!
The Mormon Battalion Museum was fabulous! The kids loved the presentation and absolutely loved panning for gold and pumping the old water pump. In the story of the men leaving for war one 9 year old boy chased after his father, wanting to go with him. It took him 3 days to catch up and he walked all the way to California. That is the same age of my son Joseph. I can't believe the terror he caused his mother after she discovered he was gone.

We also did the USS Midway tour. This was amazing. We highly recommend this tour. The kids were about done half way through (which is saying something as the boat was massive!). I would really like to go and finish the tour out. We didn't even make it to the tower, grrrrr.

In the engine room were two veterans who had once worked on the ship. The boys had lots of questions for them and they were great to answer all of them. I think they were excited to see the boys so enthralled with the equipment. The kids took notes and answered questions along the way and in the end earned their "wings". Joseph also ventured onto a flight simulator which both Ronny and I were a little surprised at. He is does not like roller-coaster type rides.

A Young Woman In Our Midst

2011-11-06T12:31:00.000-08:00

Charley turned 12 on Friday. Can you believe it!?! She entered Young Women for the first time this morning, we all said goodbye to her in primary and off she went. She was so very excited to dc primary and head to YW with her friends. She has grown up so fast and I wish I could slow the clock down.

Friday was a pretty busy day here and she had to share her special day with her Dad having another scope done on his throat, one crazy day of school, and a ward party. With all the craziness she was willing to hold off the birthday cake until Sunday evening although she was able to open her gifts before we headed out for the ward party. We were also able to make it to the mall to have her ears pierced in the late afternoon. She is soooooo excited for earrings. It took a good year to talk Dad into assuring him she was old enough to have it done.

We are so lucky to have Charley in our family! The boys do not yet realize how great a big sister she is, hopefully they will figure that out soon and give her a little more respect and privacy. She is an amazing daughter as well and we could not be more proud of her. We love Charley!!!!!

Cleopatra Presentation

2011-11-02T08:02:00.000-07:00

Charley has been working on a Cleopatra project since the start of school in July. Each student chose an important person from history to do their "Images of Greatness" project on. With all that was going on with Aaron, Ronny and I were only able to give her minimal help at best. Last night was the presentation of projects from their class. Part of the project was to write, memorize, and perform a bio poem and also display a project board similar to a science fair project. Pretty much the only help we gave her was to help print out things on the computer, cut, paste, and buy her costume. I was absolutely amazed at her performance last night. She was amazing, I know I'm a little biased but really she was! (however we need to work on Roman Numerals, it was Cleopatra the VII and not the XII I think.)

Halloween 2011

2011-11-01T12:47:00.000-07:00

(Her hair was all black when she left, I guess the hair dye doesn't last very long.)

This year we let Charley go trick or treating with her friends. After she left one of my friends asked me if I gave her a cell phone. Oops, next year I won't make that mistake again. (I'm still getting used to this new age of independence!) To say the boys got a good load of candy would be an understatement. When Ronny came back with them he looked at me and said "I NEVER got this much candy as a kid" Half way through the boys came in dumped their first pumpkin of candy out and went for another, they succeeded. I guess having our houses so close together and having several town homes around the corner is a major plus on Halloween! I'm glad they enjoy getting it as much as eating it because it will magically disappear long before they will eat enough to make a dent in the amount they have!

Our Family

2011-10-31T11:03:00.000-07:00

Aaron's Final Farewell

2011-10-28T08:23:00.001-07:00

Beautiful Heartbreak - Hilary Weeks - Every Step

2011-10-27T13:52:00.000-07:00

A friend shared this with me. Speaks volumes.

Its Great To Be Eight

2011-10-26T16:16:00.000-07:00

Happy Happy Birthday Sam! Sam has been so excited for his birthday and baptism this year. He came running in this morning, gave me a great big hug, reminded me it was his birthday, and shouted "Mom, I've been waiting to be 8 my entire life!" We love Sam!

Crunch!

2011-10-26T07:30:00.000-07:00

As we were leaving the zoo last Friday we were stopped at a stop sign in the parking lot. The next thing we knew, crunch! We quickly pulled over to the side of the road and checked the kids to make sure everyone was o.k. I then got out of the car and found this:
We exchanged information with the other driver and went on our way. On the way back to our hotel I kept trying to call our insurance agent but my phone would not complete the call. The previous night Ronny had found the new cell phones he wanted to upgrade to were on sale and he could get them free. He jumped on the sale not realizing that when it was completed it would essentially terminate our cell coverage with our previous provider. Result, no phone. Ronny instead shot an email out to our agent that night to report the accident. I guess if you are going to be in an accident this is the kind you want but it sure put a damper on our "Get Away" weekend. Now I get to have the hassle of dealing with their insurance agent trying to get our car fixed. Not really what I wanted to do this week!

San Diego Zoo

2011-10-26T07:09:00.000-07:00

Our next adventure was the zoo. I told the kids and Ronny they really hadn't been to a good zoo until they have been here. I told Ronny it was so big they had a bus tour and a skicab ride. They were impressed.

All day long the kids would say, "Can you take a picture of me doing "this"?" They really enjoyed the tours and the animals. The animals were unusually active due to the overcast skies from what the staff kept telling us. We didn't see the tigers but every time we go to the zoo here in UT they are extremely active so the kids were not too disappointed.

Sea World

2011-10-24T07:12:00.001-07:00

Sea World was great. It was hard to decide who was more excited, Ronny or the kids. When Ronny saw the killer whales the first time his eyes bugged out and he couldn't get over how big they were.

Watching the kids and Ronny feed the dolphins wast he highlight of the day for me. They were all in heaven and continue to talk about it even now!

Check out Ben's face above, priceless!

Can you feel Ronny's excitement here?

All day long I would count heads as we moved from one place to another. Each time I would frantically look around knowing I was missing someone. Every time I would have to tell myself 4 kids was all I was looking for. Will that feeling ever go away? I hope not.

Dragon Award and Field Trips

2011-10-24T07:00:00.000-07:00

Joseph received the Dragon Award for Leadership this month. Way to go Joseph. The short assembly to honor the kids was held before school. YIKES! (Not really my best time as I'm trying to get 4 kids and a husband out the door to their various destinations.) They served donuts and juice so the kids were thrilled!Directly following the assembly, Ben's class went on a field trip to the pumpkin patch. As I am not traveling to the hospital anymore I signed up to be a chaperone. I was a little nervous at first as a few people came up to me and asked if I was the mom who just had a baby die. Wasn't exactly ready for that but it all worked out. We had lots of fun and I met some fun moms who have kids in my other kids classes. We'll have to look into that for some play time!As soon as we got back from the field trip I raced home to get started on the laundry as we were scheduled to leave for San Diego that next morning.

What a Man

2011-10-15T12:23:00.000-07:00

Last year Ronny won his division in the South Jordan Marathon which gave him free entry into this year's race. He wasn't sure if he was going to run after Aaron's passing. He decided just a couple days ago he would run and just see how things went. I can count on one hand how many times Ronny has gone for a run in the last year. Needless to say, he was running this marathon cold.Like last year, the kids and I loaded up and cheered him on. We once again leap frogged him starting at mile 15 (which by the way was right by our house!) and cheered him all the way to the finish line.Ronny finished in about 4 hours and 45 minutes. Considering neither one of us thought he would be able to finish at all, I would say that was a pretty good time.He definitely earned himself a good adjustment and massage. Good thing Dr. Luce was there to help out with that! Jake is a very good friend of ours and has been one of the sponsors for this race from the beginning. Too bad I didn't have video of this. Ronny was hollering out loud, it was pretty funny.Ronny turned 37 just two weeks ago. When he told me he was going to run the race I reminded him he wasn't as "young" as he used to be and to be very careful. He keeps telling me he's "old", I tell him he's not old, but he certainly isn't "young" anymore, welcome to middle aged! I am concerned about how Ronny will feel tonight and in the days to come, especially with our upcoming trip. In the end though, I'm really proud of him for wanting to do this. Life for us has been anything but routine this last year and we are still coming to terms with how our lives have changed. Many tell us we are acting "normal", we certainly don't feel "normal" like we did a year ago. We are learning what our new "normal" is I guess. Life continues to roll on and we are finding our path just like everyone else. We certainly look at life differently and feel a peace that all is well and we are earnestly searching out moments of joy. Way to go Ronny!

Conversation Starters

2011-10-13T10:40:00.000-07:00

The week of Aaron's funeral we had new neighbors move in. I wasn't really in the social mood at the time so Tuesday night I made some cookies and Ronny and I headed over to say hello and welcome them to the neighborhood. We chatted for a few minutes and they asked how many kids we had. I told them we had 1 girl and 4 boys. After we came home Ronny said he was wondering what to tell people when they ask that question. When I met a new friend a few months back, (yep that's you Rachel!), I asked her how many kids she had. She had said 4, 3 are here and one is in heaven. I remember thinking that was a very interesting response at the time. Now I think it was a GREAT response and have adapted it to our situation.

I finally made it to the county health department to get Aaron's birth certificate. When I came home and looked at it I realized that here in Utah they put the birth weight on the certificate, (OR doesn't do that). Aaron's reads: 00 lbs 14oz. I also noticed that if you pick up the certificate after a death certificate is issued, the birth certificate also includes the death date. Now I wish I had picked it up sooner.

Last week Sam came home with a scratch on his face and broken glasses in his hand. I asked him what happened and he relayed that a kid at school pushed him down. Sam said he was fine but he felt really bad his glasses were broken. I was pretty miffed about the glasses, not at Sam but at the kid who did the pushing. (Sure would like to send those parents the bill for new glasses!)

I finally got Sam into the optometrist yesterday afternoon. After his initial assessment he turned to me and said, "Well I don't think he will need surgery, yet!" Seriously, not a good way to start a conversation with a mother. It turns out Sam's eye condition, (can't really remember what its called at the moment), has gotten progressively worse even with his glasses over the last year. His new prescription puts him in the thickest lens possible on his bad eye. With the new glasses he can see 20/20 so the doctor says there's no need for the surgery just yet. Great! Sam whispered and asked if this surgery would be like his appendix surgery. I whispered back and said yes but that it would be on his eyes, but that he didn't need it just yet. Hopefully we can push that one back for several more years. I'm a little tired of hospitals at the moment.

Billing Headaches

2011-10-12T10:41:00.000-07:00

I've started the process of trying to figure out where we are in terms of bills on Aaron's account. I have gathered all the insurance statements I could find. I think after all these months I'm only missing 2 pages of one statement. I can pretty much figure out what I'm missing off the pages I do have, so I think I'm good. At one point through all this I stopped looking at the statements and just threw them on top of the growing pile. I went and opened everything up today and one of them contained a check (oops!), now I need to sort that out as well. Needless to say there is a book of papers to look through. I noticed several mistakes were made along the way in the billing process that they notated and tried to correct which makes everything that much more difficult to figure out, and my headache that much more painful.

After an hour or two I think I finally got a handle on the statements so far. Of course the hospital has yet to bill their portion, so the big "whamee" hasn't come yet. I called them last week to see what they had so far. The billing person didn't want to tell me the number. I laughed and asked if it was over a million, she whispered "yes". I then asked if it was over 2 million and she about yelled "no" in relief. I told her I had expected this and she was shocked. I then convinced her to read me the numbers. Surprisingly it was better than I thought it would be, but I know there were several more things that needed to be billed.

If you know me well, you know that debt is my one big enemy and it causes a great deal of tension upon my shoulders. Focusing on Aaron these last few months I pretty much ignored the statements, but now its time to lay it all out. I get frustrated when the hospital tells me it will take at least a month to do the final accounting. Really!?! So what exactly have you been doing all this time and what's the point of all your computer generated systems if not to make billing more easier. I like having a budget and knowing where we stand on things, so you can imagine my frustration level with finances is a little elevated right now!

Testimonies and Certificates

2011-10-09T11:55:00.000-07:00

Yesterday Aaron's death certificate came in the mail. I could only look at it for a minute. I still haven't had a chance to get his birth certificate. Ironic that we should have the other one first. The Social Security Department has requested that I bring them a copy. I sent their $30 check back with the box checked that Aaron was deceased and called to notify them personally, shouldn't that be enough?

Today was a tough one. I didn't realize when walking into church this morning it was Fast Sunday. With Fast Sunday always comes baby blessings. When I realized what was going on the doors were closed and I didn't want to make a scene walking out, so I stuck it out. Its not hard to see other's blessing their babies, I'm very happy for them, its just that it reminds me that I wasn't there for Aaron's. My body was still being put back together at that point. I saw that Ronny was having a hard time today too. Ben asked me if one of those babies was Aaron and I said no. He asked me yesterday why I made Aaron die and not come home. I knew these questions would come sooner or later. I explained once again about Aaron's situation, someday his little brain will be able to comprehend. When the time came for testimonies the new mother's hurried up and shared their thoughts and feelings. I knew I should get up and thank the ward for their service to our family, I just couldn't. I looked over at Ronny and could see he was thinking the same thing. He did what I couldn't today, he got up and shared gratitude for the both of us.

A Quick Visit

2011-10-06T09:12:00.000-07:00

We have been busy at home getting our house back in order after so many months of chaos. Tuesday brought several deliveries, school pictures (I totally forgot to send in Ben's picture money so we will have to catch retake day), a quick visit to Aaron's grave to take more flowers , and not much done at home. Wednesday brought walks to school, a trip to Costco to restock the pantry, several visitors, calls to the billing department at the hospital to see where things stand, and karate. At some point we will get to homework, school projects, and maybe we'll think about Halloween costumes soon. We are also trying to plan a family vacation in the next few weeks just to get some down time together.

Life certainly doesn't stop or even slow down in our home. I was happy to get a few minutes at Aaron's grave with the kids on Tuesday. We will visit often just to feel the sweet spirit that hovers there and to get a few quiet moments of peace. Aaron's funeral was lovely, we felt lifted and supported by those who joined us and those who sent their love. I knew several more were in attendance who we couldn't see including our sweet boy. When I get the photos back from the photographer I will post them.

At some point I will make a photo book of Aaron's life, find a memory box, dry some flowers from the arrangements, etc. etc. I am just trying to pace myself at this point. The work that needs to be done seems insurmountable at times but I now have quite a bit more time to work now that I am not driving back and forth from the hospital. It feels good to be busy, actively getting things accomplished. Work is Good! Forward we roll comes to mind.

Are You Ready?

2011-10-02T16:54:00.000-07:00

Many people have been stopping by and calling to check on us. We have appreciated it for the most part. The one constant in each conversation has been, "Are you ready for the funeral?" in some form or another. I don't know how to answer that. Is anyone ever really ready for that? We've also been told that we seem to be acting "normal" as opposed to some other reaction. I don't know how we are supposed to react, we just go about our days as best as we know how.

We've listened to some of conference (when our cable doesn't go out) and Ronny took Joseph to the afternoon session today. Apparently one of the last talks was about how to deal with tragedy. Ronny said he listened knowing that the words should apply to us but also knowing our situation was different. The speaker spoke on seeing the lost potential of a child when their life was cut short from some form of tragedy.

Our response and feelings are this: Aaron's death was not and is not a tragedy. Aaron by all statistical and medical knowledge was never supposed to live and we had 4 1/2 months of great memories with him. Sure, there were some really tough days amongst that time but we would not have traded our time with him for anything. We loved him and will surely miss him, but we know our life here on Earth must continue until the day comes when we can be reunited with him. We have our moments of grief but the joy of knowing our family is eternal is always constant in our minds and hearts. We take comfort in his memories and can feel his presence in our home constantly, Aaron is here where he was always meant to be.

Flowers and Donations in Memory of Our Sweet Aaron

2011-09-30T14:58:00.000-07:00

Many of you sweet friends and family have been calling and asking about sending flowers or donations. If you would like to send flowers you can send them to Broomhead Funeral Home 12590 South 2200 West, Riverton UT, 84065. If you would prefer to make a donation in memory of Aaron you can do so at the March of Dimes, (marchofdimes.com) scroll to the bottom and click on the "Give" box. This wonderful organization provides funding for countless services in the NICU where Aaron lived and many more NICU's across the country.

Final Arrangements

2011-09-29T13:30:00.000-07:00

For those wishing to attend we will be holding a funeral service for our sweet boy Monday, October 3, 2011 at 11:00 am at the Daybreak LDS Stake Center at 4517 Mille Lacs Dr., South Jordan, UT 84095. A public viewing will be held 1 hour prior to the service in the Relief Society Room. Aaron will be laid to rest in the South Jordan City Cemetery directly following the service.

Saying Goodbye......

2011-09-29T00:35:00.001-07:00

Aaron Thomas Bjarnason
May 16, 2011 - September 28, 2011

"For the eternal purposes of the Lord shall roll on, until all the promises shall be fulfilled."
Mormon 8:22

Waiting....

2011-09-28T14:55:00.000-07:00

Today has been another day of waiting on the cardiologists. They still have not "gotten back to us". We have two n.p.'s today, one called and did a great job of spelling out exactly what our concerns, questions, and frustrations are. Both have called repeatedly to see if they were even going to come over today.

I had a great conversation with many of the staff we have come to know and love, our nurses, our n.p.'s, our March of Dimes and Parent to Parent coordinators. I explained that our frustrations of not having the information we need from cardio was delaying our decisions on what direction to take with Aaron's care. We are all on the same page on our side of the bridge, we just can't seem to get those on the other side to understand that those answers are extremely time sensitive and every minute that ticks by is causing an undue burden on Aaron and on all those who take care of him who are anxiously waiting.

I know this can be stressful

2011-09-27T19:20:00.000-07:00

This morning as soon as the boys were off to school I headed down to pick up my sister who just came home from her mission. She graciously agreed to hold down the fort at home so I could dash up and meet with the cardiologists who said they would come in for Aaron's consult this morning. Morning turned into afternoon. Rounds were late but everyone concluded that cardio needed to be "actively harassed" until they came over. At 1:30 they finally called (after the harassment had begun) and said they would be over sometime in the next 2 hours. They finally came about 2:30ish. Not the Attending we had expected, the one who would be doing Aaron's cath, someone we didn't know. Our nurse even asked him if he was a new fellow. He asked me what I understood about the procedure and what had taken place in the time leading up to them coming. I told him about Aaron's missed appointment date last week and him contracting the parainfluenza bug. I told him we had been in constant contact with the cardio department and had been given requirements for Aaron to be transferred for the cath procedure. I told him that Aaron had met all the requirements and we were ready to be scheduled and taken over.

He examined Aaron as did the fellow he brought, the one who backed out on us yesterday, she apparently didn't want to come by herself. What!?! She then examined Aaron. Then they both looked up his charts for the last several days and weeks. He asked me a few questions here and there and then told me he had reservations about Aaron having this procedure at this time. He said they normally didn't take kids who had the flu within the last 6 weeks because the results may be skewed and that he thought Aaron's vent settings were on the high side. I again told him that from there recommendations Aaron had to have 3 negative cultures from the flu, which came from the lungs I might add and were done over a week ago. He then asked if the doctor who was going to do the procedure knew about the flu and I said yes, his team were the ones who set the requirements.

He then said he didn't think they would do anything now but would have to discuss everything with the other doctor as he would be making the decision. (Why the heck isn't he here then, why are you here????) He told me he would get back to me. I asked him when that would be. He said, tomorrow. I literally bit my tongue from chewing the guy out! Tomorrow, you get that we've been waiting for you for more than 24 hours and you will get back to me. Ahhhhhh! He then looked at me and could tell I was pretty irritated and then said, "I know this can be stressful sometimes." I just about kicked him out of the room at that point. I didn't say a word, I just glared at him. He left quickly after, before my tirade started.

After he left, several of the nurses came in to find out what happened and were just as frustrated as I was. Our sweet nurse today listened to me vent my frustration repeatedly. She was great, she went and told the N.P. that when cardio calls that I wanted to talk to them personally and that we all requested the doctor who was supposed to be here today to actually walk over the bridge and assess Aaron himself before making any judgement calls.

What really gets me is that they don't think that my time or Aaron's time is valuable. I made arrangements for two days straight to meet with them and they put Aaron off again. I know they are busy which is why when they say they will come I set aside a large block of time but when they do stuff like this I feel like sending them a bill for my time they have wasted! There are quite a few issues that need to be addressed with Aaron's care and this is the one that needs to be checked off right now. We can not wait 6 weeks for this 6 weeks is a lifetime to Aaron. We are hoping this procedure gives us the information we need to make the big decision on what to do for Aaron, keep going or allow him to return to heaven. Liver and bones don't make a difference if the heart and lungs can't function on their own and this procedure will begin to unravel that information.

Mad Mommy!

2011-09-27T05:41:00.001-07:00

Yesterday did not go so well for us. Aaron's first echo had some glitches and needed to be redone so when I walked in at noon that was just getting underway. The results of that one were what we wanted, left to right shunting and moderate PDA. So, Aaron met the requirements to go to the cath lab. The call was made to Cardio to come and get the ball rolling. The resident said she would be there in the afternoon to make the initial assessment. (The procedure is a resident comes over, then the fellow comes over, then all 3 come over, its time consuming and frustrating to say the least!) At 4:30 the resident calls back and says that instead of coming over then she'll come by tomorrow then talk to the Attending and then make the plan for transfer.

To say I was frustrated is an understatement, irate would be a better word. Our N.P. had told her I was there waiting and that I had to make special arrangements for child care at home. We have had pretty much every consult you can have and no other specialty pulls this on us. There is no reason why one of the residents could not have come over and made the initial assessment yesterday. There are several of them as 6 of them have been in Aaron's room before at one time. This would not happen to one of their clinic patients, this would not have happened if Aaron was across the bridge.

We have had this problem before and I asked the Attending how to get them to come over when we needed them and he said, "just call us, we'll come". Obviously that is not the case. So today when they decide to mosey on over that bridge and they ask me what else they can do for me, I'm going to Spell It Out for them! Today you get Mad Mommy!

Heaven is Near

2011-09-26T03:51:00.000-07:00

Aaron's initial viral panel came back positive for staph and positive for a gram negative coxi (sp?) yet to be determined. The staph they believe is in his trachea and for now will not be treated. The coxi will hopefully be identified sometime today and they will decide what to do about it then, they are thinking they will most likely give oral antibiotics for that. From the pictures you can see that Aaron's belly is quite distended, mostly from an enlarged liver. Aaron's direct billiruben is very high and his skin is very yellow. Between the prolonged doses of heavy antibiotics in the last 2 months and multiple sepsis episodes his little liver is having a hard time keeping up and is getting backed up. If it fails, the only way to fix things is most likely a transplant, something Aaron may not even be a candidate for at his current age and size.

This week will most likely be the longest week yet, and that is saying something! Aaron will have an extensive echo this morning which will be sent directly to cardio. If he "passes", all left to right shunting, they will schedule him for transport and for his heart cath. We are anticipating that to happen on Tuesday but will know hopefully by the end of the day when everything will play out, the sooner the better at this point.

Ronny and I know that this week is going to be rough and we will need to be at the hospital quite a bit. Sleep has become elusive for me now, I know I need to rest but my body just won't allow it. The kids go back to school this morning. I know this week is going to be difficult for them as well. This is the time I most wish I could split myself in two so that I can be in both places taking care of all my children's needs. We'll just have to figure things out as we go.

Standing in Aaron's room these last couple days I can feel that Heaven is very near. So many times Aaron has stood on the threshold of both Heaven and Earth and weighed his options. We are there yet again. In these next few hours and days we will most likely know which side Aaron has chosen. Things may change rather quickly in the upcoming days so I will most likely not be able to update the blog as quickly as everyone wants, I will do my best as time allows. With all the stress and uncertainty that lies ahead its hard to wrap our heads around the idea it will become more chaotic than what we have done thus far, yet both Ronny and I feel a sense of peace that all will be well. Forward we roll.........

Tube Change

2011-09-24T19:54:00.000-07:00

Today's tube change was successful. After it was completed I found out they did not give him any extra sedation drugs which really surprised me. After the change took place they also switched him back to the oscillator vent in preparation for the transfer to Primary's. It took him two hours and a few tweaks on the settings to finally get him to saturate in the 90's. His CO2 level at one point was 148, it should be in the 40's and 50's although we don't freak out too much until its in the 70's these days. Even on the new vent he is requiring at least 60% oxygen on his FIO2.

The plan now is to figure out what settings on this vent will keep him the most stable. On Monday he will have another echo done and if that is still left to right the tentative plan is to transfer him to Primary's on Tuesday to the CATH lab. The general consensus is that the current status quo is not getting Aaron anywhere other than backwards so although he is not where we would like him to be, we need to press on.

Aaron's liver has significantly increased in size and we are very worried it has started to shut down. Until we know for sure we again are moving forward and will deal with that when we have to. Another concern is that we are not sure he will be able to tolerate the heart cath but again, we are moving forward. Our last concern and probably biggest concern is that Aaron's chronic pulmonary hypertension may now be primary pulmonary hypertension. If that is the case then we will have to make the decision when to stop life support as he will not be able to recover from that. We will know more when he goes to the cath lab, until then Forward We Go....

Risky Business

2011-09-24T07:12:00.001-07:00

Aaron has not been doing so good these last couple days. His oxygen needs have gone up and yesterday two small air pockets (neumo's) were found outside his lungs on his chest films. Normally a chest tube would be inserted to release them but Aaron wouldn't be able to handle that at the moment. His oxygen needs have increased and he is having trouble with his CO2 numbers. He has an air leak in his vent tube and one of his cultures had another positive for staph colonization although they can not confirm it with his current tube. The plan today is to change out his tube and put a bigger one in. The last time his tube was changed he did pretty well but he was significantly more stable. We are not sure if he will be able to handle the change today and from what it sounds like they are going to also try to put him on a vent that will allow him to be transferred over to Primary's today. Today is going to be a long day.

Are You Really Asking Me That???

2011-09-22T14:27:00.000-07:00

Aaron's weight shot up again last night 230 grams. His belly is once again significantly extended. Rounds today were somber and frustrating. It felt as if the doctor and nurse practitioner had given up and were just biding their time. Aaron seems to be able to be consoled better today and comes down quicker from "cares". When I left today he was at 44 on his FIO2.

While standing next to Aaron and talking softly to him today's nurse came over and wanted to hold his hand as well. She started to ask me questions that included, "Have you ever taken care of a handicap patient, Have you had to deal with lots of crisis in your life?, Have you had to deal with a close family member passing away before?" At one point she said, "Well instead of having to make the decision to stop life support he may just go on his own." After all that she asked, "Have you had a chance to laugh about something Aaron has done?". I was so shocked I could barely talk. I just wanted to scream "Get Away, this is my time with my son and I do not want to share it with someone who asks these questions!"

Throughout the months of July and August when Aaron was so close to the edge I never felt the despair that I felt in his room today. I was so frustrated, I could hardly speak! I'm always asked in rounds if I have any questions. I so wanted to ask them to have a better attitude. If I wasn't so close to loosing my cool I would have. I know Aaron is once again close to that edge but time and time again he has decided to keep playing this crazy game of life. I don't know that this time is different but I'm sure not giving up on him now!

One a much happier note, my sister comes home from her mission tonight. We are so excited to see her after 18 months. I have not been the best letter writer as our life has had other priorities but we have prayed for her every day and night while she has been gone. She has done a great job as a missionary and is certainly returning with honor! Hooray Michelle!

Bark Bark Bark.......Dad!

2011-09-21T09:52:00.000-07:00

At 4 a.m we heard the first of the barking cough coming from Joseph's room and shortly after we heard the call for help. NICE! Joseph had his trip to the steamy shower and the humidifier brought back in his room. He slept well after that considering his nasty cough. This also meant a trip to the doctor's office this morning. Joseph's pulse ox was only reading in the low 90's which tells us his asthma which was doing so well before has taken a good hit. He may need to go back on those medications. The doctor examined him and thinks he most likely has the same parainfluenza as Aaron. His lungs sound decent so he was given a dose of steroids for today and one more for tomorrow. Hopefully that will clear everything up. Unfortunately we don't know for sure if its the same strain so we are deciding what to do about going to see Aaron. The thought of not seeing him everyday especially when he is sick is almost too much to think about but we don't want to introduce anything else to him either. Ahhhhhh, we could really use a break here don't you think?!

Day 128

2011-09-20T12:56:00.000-07:00

Today Aaron's chest films showed his right lobe is recruiting once again. He is more tolerant during cares and has started to recover quicker when we finish. He still has quite a bit of secretions and mucus that we suction out and is now coughing up into is mouth as he now has an air leak. One of his vents (he is on two, Jet and conventionial) settings were weaned by 1 today. He received blood on Sunday so his CRT is much higher at 49. He had multiple labs run this morning. His liver numbers are significantly elevated which is concerning. This may be the start of liver failure and something that will be monitored more closely now. The Attending is cocncerned Aaron is out growing his body. I don't really know what to say to that, other than shrug my shoulders. Just add that to the list I guess.

On a good note the big kids visited the dentist today. No cavities!!! Happy day there as I did not want to return with all the construction chaos in the area of the dentist's office! Today the kids are visiting Discovery Gateway. They have had so many adventures in the last week its hard to keep up. Nana took Joseph's county report seriously and they have been all over Utah County, and I mean all over it! He will have a hard time weaning the pictures down, apparently they are picking up 75 of them today at Costco. Yesterday Joseph and Sam went shoe shopping for church shoes and tennis shoes so that can officially be checked off the things to do list. Our kids were asked to sing a song for the upcoming Primary Sacrament Meeting Program in October. We are somewhat of a musically challenged family so we have lots of practicing ahead of us. That will most likely fill our Family Night agendas each week up until the program. The bishop called this week and reminded us that Sam's baptism is coming up. We'll need to get on that soon.

Benefit of the Doubt

2011-09-18T07:29:00.000-07:00

This has been as especially hard week for Ronny and I in the NICU. Aaron turned 4 months old this week. He is day 125 I think. Aaron had some ups and downs this week. One of those 2 steps forward 1 step back weeks. In the midst of the step back part some unfortunate things happened that were hard to explain initially. Unfortunately in reports that were made, some miscommunications and misunderstandings were relayed. Fingers started getting pointed and they landed for the most part on Ronny and my shoulders. Within a day or two of these reports the real cause for the problems surfaced, one a machine malfunction that was fixed and the other a realization that what was thought to be reported never really happened. Before those remedies were made the brunt of things were dropped in our laps.

In one of the cases in the midst of all that happened some tempers flared, some things were said that shouldn't have been said, especially in front of myself and my son. I was familiar with the person and knew that this particular person was having a pretty hard day, so I dismissed the fit and gave them the benefit of the doubt. In the other circumstance Ronny did the same with the person who had been in the room during the problem he was present for. He was pretty shaken when he came home so I sent him out on a run to work it out. In both cases I was the one to take the heat the following day. What frustrates me is that the fingers started pointing before anything was first confirmed and that those fingers were directed towards us, the parents.

As any parent would confirm, to have someone report that something you did or were a part of would cause harm to their child stings pretty sore. I don't have to tell anyone how stressful our lives are at the moment or how overwhelmed we are. With all that is going on we are very sensitive, its something we surely are aware of and something we do our best to deal with and help each other constantly. I know EVERY parent in the NICU feels the same way. To have something directed toward the parent with or without confirmation is troubling in such a setting, especially one that is so overwhelming to begin with. We have felt our stress level multiply these last few days over things that never should have happened and its unfortunate. I pray others don't have to go through this and hope that benefit of the doubt is extended in both directions from this point on.

This situation has kept me up at night and churned in my head and my heart for a few days now. I debated whether or not to include it and my feelings here on our blog. In the end I realized just venting it out would help me but also I feel like maybe it will benefit someone else out there and felt impressed to include it. A few years back I read an article in our church magazine about charity. In it the article relates that sometimes the best form of charity is to give someone the benefit of the doubt. That has stuck with me over the years, its something I've tried to apply in my life, something I am still striving to be better at, something I am trying to do right now. Emotions seem to get in the way all too often and I am trying to take a moment to pause and breathe before I react.

I did address this issue yesterday and the day before and tried to leave as much emotion out of it as possible. In the end the Attending did come in and apologized yesterday, I appreciated that. In that same conversation she asked the dreaded "when should we stop care" question which of course just made everything 10 times worse. It seems that each Attending feels the need to ask us this question. Ronny and I discuss our options, our feelings, and our concerns about Aaron and his care daily. We make our decisions together and with prayer and as each problem arises with Aaron we ask ourselves that ever dreaded question. Its an all too familiar conversation that leaves us emotionally drained but one that has to be done. Each time we discuss it and each time we are asked by the staff it gets more difficult to answer, not because our answer has changed that much but because to say the words out loud almost feels like we are giving away some of our faith and hope. In the end after each of these conversations we find ourselves on our knees begging for peace and strength and each time the Lord has been there to pick up our broken hearts, put us back together, and give us the strength we need to get through one more day.

Another Setback

2011-09-16T13:45:00.000-07:00

Right as I finished my post this morning one of those not so great phone calls came in. In the early hours this morning Aaron's right lobe collapsed. This in turn set off his pulmonary hypertension and when the NNP listened to him his heart had a "gallop" to it also indicating pht issues from what I am told.

I grabbed my purse and Ronny dropped me off at the TRAX station on the way to work. Unfortunately TRAX didn't get the message I was in a hurry to get to the hospital as the train malfunctioned and after limping into a station we were told to board the first two trains so they could separate off the one having trouble. Needless to say it took longer than the hour it was supposed to.

When I arrived I noticed the vent settings had been turned up, not as high as I was expecting, but up. His FIO2 was at 40 and within a short time was turned down to 36. After doing cares, having an echo, and taking a trach culture he was back up to 50 but has come down again.

Rounds start about 12:30. Yesterday the Attending did rounds outside our room and didn't include me. This is the first time an Attending has excluded me from rounds when I have been here. I was pretty irritated with that as that is why I make arrangements to come in the morning. I think she sensed that so today they came in the room for rounds. When they were done with the numbers and basically saying they were going to wait to change things until after they get the echo results she turned to me and told me she was concerned they couldn't wean the nitric off or change him back to the other vent. I told her that I felt we went a little fast with things the last day or two and after hearing what happened with Aaron's lungs that he was not yet over the flu and pnuemonia. She said most kids get over that in 3-5 days. What!?! I have yet to hear of someone gettinig over pnuemonia in 3-5 days let alone a baby 4 lbs! After heariing what happened I was not surprised that he needed to go back up on the nitric when his lung collapsed as trauma always sends his hypertension into a tizzy. I got the feeling like she wants him to be farther along and doing better than he is. Don't we all! So my question is this, are you concerned because he's not following your timeframe or are you concerned about getting him to the CATH lab by next week, or should we be concerned that Aaron is still fighting the flu?

Here's my thoughts on the matter. Aaron is on his own timeframe, have we not figured that out yet??? This Attending is the first to think that he should be better by now as the last Attending told us when he was first sick it would take a while as well as all the NNP's we've had. So its been two weeks tomorrow since he got sick. Sick with both pnuemonia from the flu, and a staph infection. Cut the kid some slack for heaven's sake! If we don't make it to the CATH lab next week than we will go later. I would rather he go when he is ready, not when we think he should be ready.

There were some other issues during rounds today that I was pretty ticked off about. I need to calm down before I say more about it though. Usually I have a good idea of how things are going to play out during the day when rounds are finished. Today I felt like I have more questions and concerns than answers. Hopefully the echo will answer some of them. For now we watch and wait. Something we are certainly no stangers too.

Another Day of Tests, Can We Go Fishing???

2011-09-16T06:58:00.000-07:00

This is what I saw when I arrived to see Aaron yesterday. He had a little tent over him and was one happy little guy snuggled on his tummy. The little marks on his heels are where they draw the multitude of labs each day.
Aaron seems to be feeling better. He is awake more often and for longer periods of time. With his bed open he doesn't have much to look at so his nurse yesterday made him a little mobile out of toys and found a great blanket that hung from the top of his isolette with a suction cup and rubber bands. I tell you these nurses are very creative and inventive! He woke up later and just stared at his new toys!

Aaron had a pretty good day. They continued to wean his nitric and when his Primary nurse came in last night he got right in line and had the best sats and numbers for the day. His weight was 2560 so the weight gain is slowing down and his belly was 1/2 cm less last night. As they wean the vent settings his kidneys start to pick up better. The other day Aaron got a hold of the catheter tubing with his toes and yanked his cath right out. I wasn't too surprised to hear about this as he tends to find these tubes and pull whenever he gets a chance. For now they have left it out.

Today Aaron has a chest film, viral panels, and another echo ordered. His nitric will be off by noon and the echo this afternoon. If his blood gasses continue to be low they will continue to wean his jet vent and possibly move him back to the Drager sometime in the near future. They are doing all they can to get him ready for the CATH lab. I think the big hold up may be the viral panels. He has to have 3 negative cultures before he can be transported and each culture takes 24 hours to come back.

When Ronny and I got home last night Nana filled us in on the days events. They boys have discovered fishing on their terms it seems. They take their bug nets and some bread to the park. Joseph lays himself way over the dock and drops bread on the surface of the water. Then he waits very patiently until a fish comes to eat it and snatches him up in his net. Apparently he is very successful and is the star at the park. They brought a bowl with them last time and everyone had to touch the fish (YUCK!). I will have to get the pictures from Nana. Oh the adventures they have had this week! Charley and Ben made a trip to Gardener Village while the big boys played at a friends house. Charley also had a babysitting job that was not her brothers for the first time in quite a while, she was very excited! They were all very tired kids when we came home. Those are the best days!

When He's Stable.....

2011-09-13T19:46:00.000-07:00

This morning the kids and I headed to the airport to pick up Nana! I think its a toss up who is more excited for Nana to come these days between me and the kids. For the kids it means time with her on new adventures and for me its the fact that I can go to the hospital and not have any worries the kids are missing me. We arrived to find Nana's plane delayed (we knew before we left but it was later than we had expected.) The plan was to go home and for me to take Trax up but after 30 minutes in the parking lot and having to repeatedly tell the boys to stop shooting spit balls at each other, I was ready to go to the hospital where it would be quiet! Yes I knew I would be throwing Nana into the lions den but they certainly behave better for her these days than me so I wasn't feeling too bad.

I arrived in time for cares. Dr. Beachy's first comment was "I was so tickled to see his chest film look so much better this morning!" At which point I asked her to share the joy with me and fill me in. Aaron's lungs are opening back up and his oxygen needs are decreasing. His vent settings are being turned down fairly regularly. His staph infection looks to be cleared up and now we are waiting for the flu to run its course.

Assuming his flu and pneumonia are getting better we now need to prepare him for his visit to the CATH lab. We don't think he'll be able to make his original date of the 22nd but hopefully it won't be too much later than that. It was decided that we would need to call over to Primary's and get their recommendations on at what point they would accept him. They received the news later this afternoon that he needed to be stable. Hmmmmm stable. Stable for normal kiddos or stable on Aaron's standards??? Could you quantify that just a little bit more please??? We also needed to know how many negative cultures he would need before being accepted. We are still waiting to hear on that front. We would like him to be off the jet and back on the Drager, off his nitric, and being weaned off the flolan before sending him over as that would give us better results, so we will see how far we are willing to go before he heads over. Hopefully he'll be off the jet in the next few days. He gets puffier while on the Jet so my feeling is the sooner the better on that end.

Aaron had a good day today. We were able to suction really thick mucus out of his lungs today. It wasn't discolored and the blood isn't there anymore. We are hoping his lungs are on the mend and his breathing becomes easier. I think being able to eat through this mess has helped give him the energy he needs to fight this off. He remains in isolation but we now only have to wear gloves, no more masks or gowns. Hooray!

New Beginnings and Isolation

2011-09-12T05:54:00.000-07:00

Last Night our church ward had their New Beginnings Program. For those of you who are unfamiliar with this let me explain. At the age of 12 all boys and girls enter the youth program, for the girls its called the Young Women. New Beginnings is a night that they welcome in the incoming girls, there are a few more things that take place but as far as it relates to us right now, that's the purpose. Its usually held at the beginning of the year but Charley was the only girl her age coming in and our ward was split earlier so this is when it was held. I was asked to give a 2 minute introduction on Charley which I of course cried all the way through. (That's what you get when you have an over tired, emotionally drained Mom who has to accept her little girl is not so little anymore!) It was a very sweet night and very good program! Charley is counting down the days before she turns 12.

During the program the hospital called our cell phones. Earlier in the day a viral culture was done on Aaron's lung secretions. Everyone thought this had already been done but it was realized that panel was missed and so they did it yesterday. They got a positive result on Influenza Type 3. Yes, essentially the flu! This is not the flu that we get shots for but it is the flu that causes pneumonia. It is rare to have it in the NICU, and as its rare Aaron must have it as that is the way we play here! Because its viral there isn't really much that we can do other than let it run its course. With it being so contagious and because we are in the NICU Aaron is officially in isolation. This means he will not have neighbors and to touch him we must be in gown, mask, and gloves. We also get another visit from infectious disease. Its frustrating to know Aaron has two major issues that are absolutely preventable. Unfortunately we have no idea where either came from, it could have been one of us to bring the germs in, one of the medical staff, or a visitor of our or another baby that we've shared a room with. With either one of these illnesses his date with the CATH lab is uncertain and may need to get pushed back.

Earlier in the day Aaron had an allergic reaction to his vanco antibiotic so that was discontinued. He had 8 days of treatment on it and we hope it was sufficient to kill off his staff infection. His belly has once again started to swell and his urine output has hit the brakes. He is still processing all his feedings so he'll continue to get fed. His IV failed later in the afternoon and after 5 nurses tried they finally got a line in the back of his head. His veins are shot. His merapenum is still needed so surgery will be called in this morning to put in a central line. Depending on who is on for surgery today they may or may not do this procedure at his bedside. If its Sam's surgeon he will, so that is who we are hoping for.

A KUB was also done yesterday to see if there were any blockages of his belly, (there wasn't). In the film you could see a good portion of the lungs. They both looked as if they were opening up and certainly looked better than the last few days. You could see there was still a good amount of junk in them but for the most part looked better. His oxygen needs and CO2 levels have also come down and his vent settings were weaned 3 times yesterday.

Today is going to be another very busy day for our little guy. We hope to get some answers from infectious disease to see how long this may take for Aaron to get over and if we should worry about our other kiddos as they have asthma. We've researched some on our own but still have a list of questions.

Compare It To A Chess Match

2011-09-10T23:54:00.000-07:00

Here are a few pictures of Aaron the last couple days. If you've been following the puppy photos you can see how much he has grown these last two weeks. Lately when Ronny and I are there he really wants to hold our fingers. When he can't find our fingers he goes after his tubes which are not the best choice for him! We try to find him things to hold when we can't hold his hands. He's getting smarter though and can tell when it is us holding his hand or something else we've put into his palm. He does seem to like to hold onto his puppy or duck.

Aaron does not feel good, he lets us know when his pain meds are not enough. He can't cry so he thrashes his arms and legs around and sets all the alarms off. Its hard finding a good sedative for him. It seems his meds are increased both in amount and frequency daily.
With Aaron being back on the Jet ventilator his belly has started to swell up again. Today it seems like we finally found the right settings to keep his lungs opened enough for him to saturate well. His FIO2 is finally back in the 50-60 range and he's maintaining 90's on his pulse ox. These machines are really loud. Today his nitric tank broke down. Getting a new one in and running was quite the juggling act. Making sure all the machines are hooked up and running right is very tedious and usually requires more than 1 or 2 Respiratory Therapists to get it up and going.The problem we are facing with Aaron right now is two fold. We are still trying to figure out what bug is causing the pneumonia and how to kill it. The other is trying to keep his lungs from collapsing and open long enough for us to figure out the first problem. Keeping his lungs open is tricky. As he is rotated the lung that is elevated tends to open up better while the lower tends to collapse and fill with secretions. Trying to get both to open up and get oxygen at the same time is like a battle between two chess champions trying to out think the other; his lungs wanting to close and his team trying to keep them open.

(Aunt Bonnie here is a picture of your Alaska Bear. It sits over Aaron's bed with his duck.)

Today Aaron seemed to finally stabilize some. For the first time in days I felt comfortable leaving and heading home to spend time with the kids and Ronny. We had some friends over to watch the football game and just had a great time with each other. Ronny went up later after the game to spend some time with Aaron while I got the kids settled in the basement for an indoor campout. Today has been the best day of the week.

Sports Camp, Pneumonia, and New Beginnings!

2011-09-09T13:46:00.000-07:00

This has been another long week for all of us. This has been the big kids first week off track for the new school year. I found a sports camp type thing through the county at a nearby rec center for them. It was amazingly inexpensive and something I knew the kids would enjoy. They get to play two organized sports in the morning and then after lunch they get to swim everyday. So far the've played dodgeball, hockey, ultimate soccer, kickball, tag, capture the flag, volleyball and one other I believe. They have loved it and its allowed me to be at the hospital. I only wish I had pictures of them participating.

The Young Women's President came over this week to give Charley an invitation to New Beginnings. I was completely beside myself when she said it was this Sunday. I knew the time was quickly approaching when she would turn 12, but now it seems to have come way too fast. She is soooo excited and I am excited for her as well. I don't know that I'm ready for her to pass this new milestone and I feel like I have missed so much time with her these last few months. I was asked to give a 2 minute bio on her and can't seem to put the right words together for that. I am way too weepy as of late.

Aaron's pnuemonia became worse in the last couple days. His left lobe completely collapsed and this morning they told us his x-ray showed his lungs completely whited out. His C02 levels were 92 today. He was changed back over to the Jet ventilator about an hour ago. They say this will help break up the secretions in his lungs and help open up and ventilate the lungs as well. Shrotly after swtiching him over we suctioned him and thick yellow junk came out, so thick it was stuck in the tube. This ventilator is loud and Aaron is extremely sensitive to all stimulus as of late. He was not happy after the switch and took a long time to saturate again. They have taken secretions from his vent tube to culture once again and have changed his medication back to merapenum (sp?). Hopefully that will kill off whatever is in his lungs. Last night Aaron weighed 2090 down another 50 grams. Soon we will want him to gain weight again. Unfortunately its hard to tell when he will hit his true weight.

Yesterday in the late afternoon a brand new baby was moved into our room. I wasn't too concerned with the neighbor until 6 adults followed her in. I found out she was just a brand new arrival and this was the first time her family came to see her. Her twin brother was across the hall. With Aaron being so sensitive to light and sound this became a problem very quickly. I felt bad for the family for getting moved into our room but at the same time I was really annoyed as they wouldn't keep their voices down and I had to ask them to turn the flash off on their camera. It didn't help that they kept going from room to room and opening and closing the door either. Finally one of the N.P.'s went out the the nurses station and pretty much demanded that this baby get moved out. Quite a lot of shuffling had to take place but they eventually moved her out. Aaron is quite the high maintenance kid and we pretty much keep his room dark and as quiet as possible. I can't blame him for wanting it that way, that's what I want when I don't feel good either.

Thank you to those who stepped in and watched and entertained my big kids this week to allow me to stay at the hospital. This has been a dicey week with Aaron's illnesses. I wish I could say he was getting better. I hope I can say that soon.

Cardio Returns

2011-09-07T17:52:00.000-07:00

Aaron had another chest film today. It showed another slight improvement over yesterday's. Unfortunately, his oxygen needs have been creeping up the last two days. Aaron was having a hard time saturating today and was staying at 100% oxygen. During rounds today our Attending decided to get a cardiac consult. He is concerned that Aaron's large PDA is causing too much of a problem with his lungs. Aaron also had another eye exam today. His eyes aren't much different from last time but the eye doc said he wouldn't need them checked again for 6-8 weeks. I hoping for the 8! He asked where we lived and said he would most likely see us in his office near where we live. I told him I wasn't going to hold my breath that we would see him there.

I decided to stay to speak with the Cardio people. I feel like sometimes things get lost in translation if I solely rely on someone else to fill me in after a consult. After rounds were complete our N.P. called over and requested someone to come over. She spoke with a fellow. She asked if he knew the Bjarnason baby, he said no but asked her to spell the last name. She said, "Sure, its B J". At which point the fellow said, "Wait a second I know exactly who you are taking about, I'll be over in about 20 minutes". And he was! I spoke with him as did our Attending. The Attending feels like they should send him to the CAT Lab (or CAS Lab, something like that). The fellow examined Aaron and said he would be back shortly with the Attending.

About and hour later they both returned. It didn't sound as if they wanted to take him over, especially as he is fighting the staph infection. The Cardiac Attending ordered an extensive echo first thing in the morning. They left shortly after. 20 minutes later our Attending walked back in and said he just received a text that Aaron has been scheduled to be transferred to the Cardiac unit on the 22nd to have a balloon placed in his PDA. This will tell them if ligating his PDA or putting a band around it would help with this Pulmonary Hypertension. He'll be sent to the PICU, the cardiac version of the NICU. They are waiting until the 22nd to give him a chance to kill off the staph before heading over. Once we are transferred there we are not sure if we will be returning to the U. Usually if you have private insurance once you move, you stay, so we will see what happens.

After all the excitement we flipped Aaron over to his belly. He had started to spit up his food again and still had not come down on his oxygen. A few minutes after turning him over he saturated much better and we were finally able to turn the oxygen down. He has been extremely sensitive to noise these last couple days so they moved our little neighbor out today. Hopefully he starts to feel better soon.

Positive Culture

2011-09-06T14:04:00.000-07:00

For the first time after several rounds of tests, Aaron has a positive culture. Unfortunately its the one positive we prayed we wouldn't hear. Aaron has a staph infection. Two things you never want in a hospital are pneumonia and staph, unfortunately Aaron has both and at the same time. One most likely causing the other. Results have not yet come back on what kind of staph it is, we pray it is not MRSA. With Aaron's history, we wouldn't be surprised if it was. The two cultures that were run yesterday and today will tell us if the antibiotics are the right ones for the job or if they need to be adjusted. The secretions they are suctioning are no longer discolored and his x-ray showed no improvement. It wasn't worse so we'll take that as o.k. today.

Aaron's CRT was 28.5 today. This frustrated me quite a bit. I asked for him to have a transfusion yesterday knowing these labs were coming, they decided to wait. Not too surprised when he was having a hard time saturating today! When I left to pick up the kids today he was finally getting his blood. 30 mls this time, that is a lot! They decided to not stop his feeds during the transfusion so they only had to have 1 PIV in this time, something he already has thankfully. He is not tolerating much of anything right now, being touched, moved, and least of all suctioned. They upped his morphine dose and changed it back to IV form and are scheduling his adavan instead of making it at nurse's preference. Hopefully that will help.

Chest Films

2011-09-05T14:52:00.000-07:00

This morning Aaron had another chest film to check on his lungs before rounds. His film this morning didn't show any change from yesterday. During rounds they decided to turn off his flolan completely and to run several more labs. (The nurse let me officially turn it off and gave me the sticker from the IV pump, its a big thing to turn that off!) His CRT this morning before labs was 37, after tomorrows labs I'm sure his CRT will fall significantly so we are anticipating another transfusion tonight and tomorrow. He was put back on full feeds as well. One of the cultures came back positive but showed contamination so it has to be redone. Each one of those cultures requires 5mls of blood, when he gets transfused he gets between 20 and 30 mls so one culture is a significant amount of blood.

Just before rounds Aaron became agitated. We tried to console him but he was having none of it. His saturations dropped into the 50's again and was turned up to 100% on his oxygen. His sats did not improve. The Attending came in and ordered another chest film stat. The film was back just as rounds started. We all went to look at the film and compare it to this morning's. This morning's film showed the entire right upper lobe completely black (collapsed). A larege section of the lower lobe was also black. The film that was run before rounds showed the same with the right side but a smaller section on the left. The doctor turned to me and said, well it looks a little bit better. Pneumonia is going to take quite some time to recover from and if he's not worse today its a good thing and this is even slightly better. This gives us hope.

Responding To Treatment

2011-09-04T12:03:00.000-07:00

We had another long night here in the NICU. Aaron did not saturate well the majority of the night. The right upper lobe has completely colapsed and a large portion in his lower left lobe has colapsed also. After a chest "thump", suction, and 12 hours of antibiotics were in he began to turn a better corner. The remaining portion of lung is responding to treatment and has started to saturate much better. We hope that we have caught this early.

He will be given a chest "thump" followed by suction every 6 hours (morphine will be on board as well). Regular chest films will also be taken to check on his progress. The latest film this morning showed a slight improvement. He will remain on his antibiotics for the next 7-10 days. Right now he is pretty wiped out and is heavily sedated. He is ridinig the vent which allows him to use his energy to fight off the pnuemonia. We hope he has enough spunk left in him to do this.

In rounds this morning they announced he had a urine output of 7.8 yesterday. His edema I would say is aobut 90% gone, he still has some work to do in his trunk area. His blood pressure is elevated and he is receiving meds to keep that down. (mine would be too if I had pnuemonia!). The most likely cause of the pnuemonia is just being on the vent for so long with all that fluid. It just happens.

We pray for continued progress and just plain tenacity on our son's part. Its hard to believe he is sick when we look at him. Compared to what he looked like just a week ago, he looks amazing! Then you see him choke and gag and fight to cough up the junk in his chest and know he is in some serious trouble.

My mother brought the kids up this morning to see their brother. In case things don't turn out as we hope and pray for we want them to have lasting memories of their brother. I was only able to get about 15 minutes of sleep since last night so I am a walking zombie. I plan to go home and get some much needed zzzz's while Ronny watches over our little one. (Ronny pretty much slept most of the night. The alarms every other minute apparently didn't bother him too much). The sacrament was brought into the NICU this morning so we were able to partake. Afterward our Attending stopped us in the hall and told me I could go home now, Aaron would be ok today while I slept. I appreciated that. He was in Aaron's room much of the night as were several other staff. Our wonderful nurse wasn't able to sit down once last night and Aaron was her only patient. When things got dicey they moved out the other baby so we are in our own room once again.

Thank you all so much for your continued prayers and service on behalf of our family. Words can't express how grateful we are for them. I know the Lord watches over us very closely and gives us the strength we need when it is most needed and comfort when we so desperately seek it. I know he gives that to us in many ways, most of which come from you. Thank you.

The Good, The Bad, And The Downright Ugly (pnuemonia)

2011-09-04T03:28:00.000-07:00

The Good: Saturday started out fairly well. Kids let us sleep in until 8:00. They worked quickly and got their Saturday chores done before the BYU game. BYU squeaked out a win. I was able to hold Aaron in a chair today for 2 1/2 hours. (This had been the first time since my birthday on July 22). Aaron has been peeing like a champ and most of his edema is gone. Aaron's respiratory therapist happened to be a priesthood holder just when he needed a blessing. Our Attending happens to be pulling a 24 hour shift, right when we needed him.

The Bad: Beavers lost their game to Sacramento State. Aaron's secretions in his lungs turned yellow. He had two fairly bad episodes where he would destat and require 100% oxygen. It would take him at least an hour or more to recover. Aaron started to spit up today and had a hard time stooling. He would flinch when you touched his belly and chest. We wondered if he had a blockage or a belly ache. Aaron had another septic work up done. Aaron's CRT was low so he is getting another transfusion. Its 4 a.m. and I am awake and on the hospital computer.

The Downright Ugly: After a chest film this afternoon our Attending was concerned Aaron may have pnuemonia. Another chest film a few hours later was signifcantly worse and showed that the right upper lobe of his lungs has collapsed, it is attacking with a vengeance. His CRP levels have come back elevated so it looks as though he does have pnuemonia. Words can not describe how serious this is or how scared we are. Aaron coded again this eveninig and it took quite sometime to bring him back. We weren't sure he would come back. His O2 sats were hovering around the 60 range at 100% oxygen ever since. About 20 minutes ago our Attending came back and told us he is putting Aaron back on the Nitric in hopes of allowing his lungs to open up some. The RT also came in and "thumped" his back with a small vibrating device to see if he could break up some of the mucus and suction it out. If these two things don't improve his sats he will be moved back to the oscillating vent. He was also put back on his heavy antibiotics. Our concern for those is that after being on them for a month, they may no longer be affective. The doctor says time will tell if he has it in him to recover. Time is the one thing I have little patience with as of late.

Hi Dad!

2011-09-01T21:31:00.001-07:00

Ronny sent this to my phone tonight. Aaron wide awake during cares! Weight down 30 grams tonight to 2210 grams. That relates to about 4 lbs 14 oz still quite a bit in fluid weight. Our best guess as to his actual weight is about 3 lbs 8 oz., so still lots of fluid to lose. His nurse tonight is officially putting his edema down as moderate instead of severe, an improvement we are thrilled to see!

Echo, UA, and Formula

2011-09-01T17:12:00.000-07:00

Aaron had his echo today. He did great! Preliminary results show no change from the time we started to wean the flolan so I am anticipating that being weaned off completely tomorrow pending the final results. His oxygen stats have not improved as of yet, I'm still wondering about his CRT but forgot to bring it up in rounds today so I will have to ask about that later.

Rounds went pretty smoothly. Everything was pretty dependent on the echo so there weren't so many changes. They did talk about having a nephrology consult to see if they couldn't get someone else involved with his swelling. Our Attending this week said he was going to chat with them and see if they had any ideas or if they felt like they needed to have an official consult. Apparently they did as when I called in this afternoon the consult had been ordered. With a consult comes more tests. Its hard to believe they could test his urine in other ways than they already have but another UA (urine analysis) has been ordered as well.

I also asked in rounds about his feedings. Aaron is on this special formula and they don't seem to want to change him back to breast milk. I have been pumping since he was born and have quite the stock pile as he doesn't take much and for so long he didn't take any. If they plan to keep him on the formula indefinitely I am going to be done pumping, because really what's the point if he's not going to use it. Also, I have a monumental list of other things I could be doing (one of which is sleeping!) as opposed to pumping for 6+ hours a day (its really a part time job!). The doctor looked right at me and said that was an excellent question and one that needed to be answered sometime in the next week. I have had many people tell me it was absolutely ok to stop and I shouldn't feel bad. So let me just say, I don't feel bad at all about stopping. I would prefer him to have breast milk over normal formula but he is on a specific formula that doesn't have the milk fat that he has a hard time breaking down and its filled with the supplements he needs. Supplements that have to be added to the breast milk. This little guy will probably never nurse as his feeds have to be carefully monitored, measured, and fortifier and supplements added and as you can't do that nursing, a bottle of breast milk is the next best thing if he can handle it which at this point he can't. We'll see what they decide in this next week, I'll be fine either way.

Blow Out

2011-09-01T07:43:00.000-07:00

Yesterday was a tough day for Aaron. His arterial line failed the previous night and the GI docs had ordered a boat load of tests to be run early yesterday morning. They tried for a new art line but were unable to get one in so they drew blood from where they were poking him. He was none too happy with this and put up a big fuss. Unfortunately putting up a big fuss requires significantly more oxygen and he was quickly maxed out. His nurse quickly reattached his pre monitor to make sure he wasn't shunting, which he wasn't. When he gets that worked up he has a hard time calming down, even with drugs. The doctor decided to cancel his echo and not wean the flolan anymore to give him a break. Unfortunately the GI docs also ordered a comprehensive abdominal ultrasound which did not get canceled. When I walked in it was under way and shortly after I came in our nurse came back from lunch. She was not happy the ultrasound was taking place. She mirrored my feelings exactly! She called our n.p. to ask what was going on and found out she had kept it in place.

While the ultrasound was going on the team came in to do rounds. I saw we had a new fellow this week, she is only a first year so I will see how this plays out. They decided to not try for another art line again (thank you!, I'm sure Aaron says the same thing!). They also upped his feeds to 28 mls a feeding and discussed all the results that were back from the labs drawn earlier, all seemed to be ok. They decided to do one more urine test to see how much protein was in it.

Last night I was able to hold him for a few minutes and we weighed him. I noticed his belly was a little firm but that it looked smaller. He weighed 2240 grams (down from 2360!) and his belly measured 32 cm (down from 34!). His FIO2 is still in the 40's and I am guessing his CRT is low after all the blood tests yesterday morning. I may ask them to run a CRT today if he is looking pale. After we got him settled he went back to sleep only to get fidgety a short time later. The nurse realized she forgot to give him his extra calcium so she got in there to give it to him. She commented that he was gassy when she opened the door up. He continued to be fidgety so I mentioned he may need some extra pain meds. She went to get it and then asked me if I wanted to check his diaper just in case. When I opened it up he had a huge amount of stool. We weighed it and it came in at 18 grams, all stool! No wonder he was fidgety! I looked over and he had tears in his eyes. He can't vocally cry with the respirator but tears he had! Poor little guy. After I changed him I pushed on his belly and it was much more squishy, just how we like it.

How Old Are You????

2011-08-30T19:17:00.000-07:00

These pictures were taken this last weekend before his belly tap. Aaron really likes to hold onto things, lately if he's awake and grasping for things they give him his dog, duck, or bear to hold onto. (Yes Aunt Bonnie, the Alaska Bear! I need to remember to take a picture of that.)

Today I made it up for rounds. Nothing was changed so they went pretty quickly. The GI docs hadn't weighed in yet so there wasn't much to discuss. His flolan will be down to 4 tonight at 1 am so an echo was ordered for first thing tomorrow morning. If all looks good they may just take it off completely as 4 micrograms isn't enough to do much for him. Aaron's weight last night was down to 2390 and his O's stayed in the 30's most of the night and day. His side is just leaking like last time through the needle hole. The doc wanted to close it but said trying to do stitches would just create more holes to leak out of. He has a pressure dressing on it but it leaks once it gets too saturated and it is filling the diapers we place over it as well so his sheets get changed often. I was able to hold him during today's linen change this afternoon (thanks Rachel for helping out too). I certainly jump at the chance to hold him whenever I can. He did great too, settled right in to the crook of my arm.

Shortly after we changed Aaron's bed two of the GI doctors came in. They came over and introduced themselves and I couldn't help but wonder how old they were. They didn't look much older than their early 20's so I'm guessing they were either residents or fellows. I sooo wanted to ask but I behaved myself. They once again asked the question, "are there any illnesses or diseases in the family that we should know about?" And I asked, relating to GI or just in general? They were under the impression Aaron was always this swollen, I had to explain a few things to them. They also asked about my diagnosis and said it wasn't something they had heard of before, no shock there I haven't met a doctor who has yet! They talked about some labs they wanted to run and a couple ideas they were thinking of. They wanted poop, urine, and peritoneal fluid samples to run labs on. They then asked if they could take pictures of Aaron to show the "older" docs what Aaron looked like. No joke, they really said that! They asked how to lift the lid on Aaron's bed and wanted to know how to turn on the lights. The nurse and I shared a little smile and she showed them how things worked, seriously if it weren't for the nurses......

Ronny headed up just a little bit ago and I'm anxious to hear what his weight is tonight. Today he looked sooo much better. Today was the first time in a long time that when he is rolled on his side his face didn't completely swell up and he is back in the preemie size diapers. Hooray for that! Not yet back in the small preemie diapers but progress is being made, lets just pray it continues!

Another Consult

2011-08-29T08:13:00.000-07:00

Friday we noticed that Aaron's belly was swelling up again. He was gaining weight but not too much. Saturday came and his belly was still even bigger than the day before and he gained over 100 grams. Not what we want! The plan to wean the flolan remained the same and it is being weaned 1 microgram every 12 hours. He is now down to 8 from 12. His oxygen needs have increased but they do not look to be related to the flolan. Aaron's triglyceride level also skyrocketed over the week. This was supposed to get better with the change to the special formula. I headed to the hospital early yesterday morning to be there for rounds with the new doctor (one we have had in the past, I think we have had them all now).

Rounds finally started after 1:00 p.m. I asked about this formula and that if its supposed to contain a significantly less amount of lipids as opposed to breast milk and regular formula and that the lipids it does contain are broken down already, why are his triglyceride levels going up and is it really beneficial? The answer once again, "we are not sure". They did decide that they would need the GI doctors to now come over for a consult to see if they had any ideas. I also asked if we had hit the point where Aaron needs another tap. The doctor said that was probably what needed to happen and that he would do it right after rounds. Right after rounds turned into a few hours later.

The tap did not go as well as we had hoped. The fluid seemed to have a hard time coming up through the needle into the syringe as it was leaking around it. We had hoped it would bring his oxygen needs down like it did last time. The peritoneal fluid was also different this time. It was a murkier yellow and clearly had blood in it. Instead of being clear it was hazy. I commented on this to the doctor. He asked if the last time Aaron was tapped if he was getting fed. He was not. They ran labs on this new fluid to see what came back. At this point they have run labs on everything they can think of in hopes it will give the GI docs more clues on what is going on with Aaron. The only result that came back last night was that the fluid had really high triglyceride levels in it, over 500. What that means is yet to be determined. The GI docs will be called in today.

Yesterday was a long day. I left from home around 9:00 am and didn't return until after 10:00 p.m. I was able to duck into the sacrament service there on the floor which was nice. When I left last night I was really tired. I met a couple at the elevator on their way down. They were leaving with their brand new baby girl. The mother apologized for taking so long to walk to the elevator. I told her no problem, I knew how she felt. Her husband asked if I had children. I told him I had 5 and was there visiting one. I asked if this sweet baby was their first and he said yes. The mother was clearly wiped out. I touched her arm and told her it would get better and that everything would be ok. I wanted to give her a hug and tell her how fortunate she was for being able to walk out on her own two feet (even at a slow pace) and taking that sweet baby girl with her. I didn't though, that would have been too overwhelming for her. I cried all the way home, wishing desperately that it was me taking our sweet little one home. Yesterday was day 105 and we are not any bit closer to bringing Aaron home than we were over a month ago now. Its frustrating to say the least, yet everyday we are grateful he is still here with us. The tears come when I am most tired and only make me more so. They are a double edge sword sometimes.

Stagnant

2011-08-26T07:42:00.000-07:00

Yesterday I arrived to find Aaron not in his normal spot. A momentary bit of panic raced through me until I realized they switched him to the room across the hall. In the last few days things have become very busy in the NICU. It seems like its raining babies in there and there was a flurry of activity. Yesterday there was a massive move as they matched up twins in rooms and added more babies as they came in. Our previous room was a large room and can accommodate up to three babies so they moved Aaron across the hall to a smaller room where there are only two. Aaron is not a big fan of the commotion as he started to require more oxygen during this time.

I made it for rounds and was able to talk to the Attending. We discussed my desire for the pre machine to be added back and he was more than happy to oblige. He said that many times he will ask for things that aren't absolutely necessary but will make him feel better about what was going on and completely understands why I want it back on. They are going to give Aaron a higher dose than what they usually give of Viagra today and see if he tolerates it. If so they will start to wean him off his Flolan today. These next few days are pretty important as he really needs this to work!

After they finished their list of items they asked me if I had anything. I told them that I held Aaron the night before and he seemed to really like it and that I not only want to hold him daily, I want to hold him for every care session I am there for. Dr. Bloom looked at me a little shocked and said, "you held him last night?" I said yes, just standing over his bed and only for about 10-15 minutes but he improved on his oxygen needs and that I think he needs it. He asked me if I held him vertical, I said as much as I could with the vent tubing but certainly more elevated than the bed can do. He said, "You're the mom and you certainly know your son and what he likes and doesn't like. By all means hold him whenever you want and then tell us what we can do to mimic it when you are not here." Have I mentioned before, I really like Dr. Bloom! Aaron's O's have come back down to the 30's since I started holding him. I don't know if its because I'm holding him but I would certainly say it helps!

Aaron's stats seem to be holding steady, not getting better, not necessarily getting worse either. Just stagnant I guess. He is gaining weight again, 2410 last night, up 30 grams. His belly also got 1/2 cm bigger. I'm hoping he'll start moving in a better direction soon.

Real Quick

2011-08-25T07:44:00.001-07:00

Last night was a really good night! When I arrived I found Aaron's pre machine was back on and picking up well. (Thank you Phil for appeasing me and honoring my request!) Splits were less than 5 the entire time I was there. After pumping it was time for Aaron's cares. His weight increased to 2380 only 20 grams so nothing to be concerned about. While changing his bedding I was able to hold him just standing by his bedside for a few minutes. When the sheets were done I asked if it was ok to just hold him for a few more minutes. Our nurse told me to hold him as long I wanted to as he was doing so well. He opened his eyes and we had a little chat. I only held him for about 10 minutes and it was a bit awkward standing next to his bed and just holding him in my hands but we both enjoyed our time. He fell asleep after a while and that's when I put him down. He had a large divet in the side of his head where my thumb was from the fluid that is still there. It's been over a month since I've really been able to hold him. His stats immediately picked up and for the first time all day his O's were down in the 30's. I read to him for another hour or so and when I left I knew he was doing much better. When I go in today I am going to talk to the Attending and nurses about holding him. As long as he is tolerating cares I think he needs to be touched and held more frequently. Babies who are full term are being held constantly and I think his little body is missing it.

"If It Gets Worse"

2011-08-24T15:45:00.000-07:00

Being that its Wednesday its a crazy day from the start. I only get about an hour with Aaron on Wednesdays and it seems the hour gets spent catching up on rounds asking questions and pumping. Not too much time actually gets spent with just him until I go up at night while the big kids go to karate.

Today Aaron had an eye exam, we couldn't put it off another week. His eyes are doing fine, almost completely mature and no signs of ROP. He is getting his sildenafil again and will be up to the full dose by tomorrow. He had a KUB (belly x-ray) to check things out and it looks fine. His formula will get fortified with 27 calories today up from 24. His potassium looks better today so they cut that supplement in half. His weight also came down another 80 grams last night to 2360. Unfortunately his belly is firmer today than it was yesterday and he is requiring more oxygen and vent pressure support. These were the two things we have been watching for with his edema. So, if these two things don't change tonight he will most likely get another stomach tap tomorrow (possiby tonight if things get worse). With his oxygen stats increasing Ronny and I are concerned about him splitting. His pre-machine was taken off earlier this week after the echo. Today I asked the n.p. to have the nurses put the machine back on intermittently for 15 minutes to just make sure he is not splitting. The n.p. wasn't too concerned about it but I told him it would make me fill better and it was an easy thing just to put the sensor back on his arm. We'll see if my request is done when I go in tonight.

Another Busy Day

2011-08-22T20:22:00.000-07:00

Sorry everyone our internet has been down for a couple days. I spent the morning on the phone with Qwest trying to get things sorted out only to find out after talking to several people that it was down all over town. After they got it back on in the area our account somehow was messed up and it took them hours to sort it out and get us back up. I eventually lost it with them and hung up and had Ronny deal with them when he got home tonight.

So, let me get you caught up. This weekend the doctors decided to try something new in hopes to alleviate the edema on Aaron's belly. They decided to stop giving him fat through his feedings. This means that they had to change him to formula that did not have any milk fats. They originally were going to spin my breast milk in a centrifuge to do the same thing but apparently that can't be done on a weekend, nor does the hospital stock the formula so it must be sent over from Primary's which seems to take hours to walk across the bridge. (sorry, just a little pent up frustration there!) The formula includes all the supplements he was in need of except for one so having him on the formula is actually a really good thing for his bones and he is tolerating it really well. Saturday they also decided to change out Aaron's bed. It was long over due, and it was icky! His double lumen picc line was doing odd things again so it was pulled Sunday afternoon. His milrinone was completely weaned off and his feeds were upped to 25 mls so there wasn't enough fluid to put through the line so we were fine with that decision. Aaron's CRT was low again yesterday so he also received blood early this morning. For the most part that was the gist of the weekend.

Today I arrived to hear that Aaron's echo looked really good. I had been worried about it all morning. His hypertension is under control with his meds thus far. His vent was showing signs of a significant leak so they decided to change out his tube for a bigger one. (more on this in a minute). They also decided to give him lasiks in hopes of bringing his blood pressure down and increase his urine output. His output has been averaging 4 or higher all weekend so that wasn't too concerning for me. They had plans to start the sildenafil back on today but are waiting until tomorrow with all the other things that were going on. Aaron also had a head ultrasound today which we do not yet have the results of. Today I changed two diapers on at 72 and the other at 41 and Ronny changed another 70+ diaper so the urine output is stellar today!

I stuck around for the vent tube change. This involves extubating him, bagging him, and re-intubating him with a bigger tube. I spoke with the doctor about this and he thought Aaron had done this before. I told him this was the first time a tube has been changed, he told me I may not want to be there. I told him I would be there in my designated corner. The fellow Ben who's been here all last week did the procedure. He told me sometimes it takes a few tries to get it in and that he anticipated Aaron being tricky. I told him he had 1 try, but no pressure! He did great and he did get it in on the first try. After he was done we changed the linens in the bed and weighed him. 2420 down from 2500 last night and his girth is down another cm so good news there! The size 1 diapers are getting a little big for him which is another sign that he is flushing some of the fluid off.

I need to tell a scripture story to my kids so that is all for tonight.

Joseph's Party

2011-08-22T20:07:00.000-07:00

This last Saturday we finally got around to having Joseph's birthday party. I was a total cop out Mom this year and just had him invite a few friends to go to the movies and have cake (which I bought) and ice cream afterward, thankfully he was thrilled with the idea.
We went to see the new Spy Kids movie. The kids enjoyed it and Ronny and I survived it and kept the popcorn bowls moving down the aisle. After cake and ice cream we sent the boys outside to shoot off Joseph's rocket that his cousin gave him. Ronny wanted in on the fun too. It was fun watching these boys together having a good time.

And The Verdict Is.......Nothing! Huh?

2011-08-19T19:54:00.000-07:00

Today was another one of those long days. This morning I called to find out how Aaron did through the night and found out his weight went up another 130 grams and his girth went up as well. I talked to the nurse about what the options were to correct this. We talked about surgical drains, intermittent taps, and transfers to Primary's. It quickly became clear that I would need to go up for rounds and most likely would need to stay for quite sometime. I called in reinforcements from friends and neighbors and quickly made arrangements for the kids to be taken care of before and after school. (thanks everyone!)

When I got to the hospital I found out Aaron's urine picked up dramatically early this morning and the nurse practitioner was turning down the vent settings. Rounds started soon after. In rounds we discussed what to do about his increasing fluid accumulation again. The doctor decided Aaron needed a surgical drain and had the fellow call over to surgery for a consult. We all agreed that we needed to get on top of the fluid retention so that we didn't end up back where we were last week. In the meantime Aaron continued to have huge diapers and great blood gases. His feeds were also moved up to 20 mls (4 less than where he was when he went NPO) and vitamin D was added back in. The plan for his feeds is to add fortifier tomorrow to add calories, and then on Sunday start back with all his supplements. He has a ton of fractures to heal! The fellow asked the Attending why he thought Aaron was accumulating fluid again and the response was, "I have no idea, we can't figure it out!"

The surgical resident came over, examined Aaron, and said that he was not a candidate for a surgical drain at this time because he wasn't bad enough, but if he got worse they would reconsider it. I told him I was concerned that today being Friday would pose problems if that "get worse" scenario happened over the weekend as it typically does. He said he would take that into consideration and speak with the Attending and get back to us. Our Attending, fellow, and n.p. came back to discuss what options we had in front of us. They decided to to an intermittent tap just to relieve some pressure and allow his belly to drain again. After getting the tray ready for the procedure the Attending came back in and said that they should wait until we got the final word from surgery. During that time they decided to turn the vent settings down again and do his "cares". We changed another large diaper and weighed him and noticed he hadn't gained any new weight from last night and his girth was down a centemeter. About an hour later they came back and said they talked to surgery and decided they were not only not going to put a drain in, they were no longer going to do a tap. They decided Aaron was doing so much better on his own and they wanted to see if this trend would continue. They then changed his vent settings a third time to allow Aaron to basically breath on his own with minimal support from the vent. Hopefully we'll be off the vent soon and back on high-flow!

So we started the day thinking Aaron would have major stuff happening today and it turned out not too much happened other than he seems to improve when we threaten big procedures. Before leaving I insisted we set in place an "if things get worse" protocol for the weekend and wanted to know what doctors would be there. The fellow we've been working with all week will stay on through the weekend and the weekend doctor would be fully prepped on Aaron's status before our Attending left for the day. I like this doctor, he takes my concerns for continuity of care very seriously which allows me to sleep much better at night!

Belly Shots

2011-08-18T16:55:00.001-07:00

Last night we got a call telling us one of Aaron's picc-lines was going to need to be removed, the double lumen line of course. After karate last night Ronny and I headed up to see what was going on and make some decisions as to whether we wanted them to retry for another picc, try to squeak by on PIV's, or call surgery in for a central line. They had to call in a picc specialist for the procedure. When we arrived the line was still in and we asked what had happened. Apparently when he was given his antibiotic yesterday afternoon a bright red streak appeared going up his leg. The picc-nurse was called and we were called. By the time the picc nurse arrived the streak was gone. They decided to not touch anything and watch it closely. So far that line is still intact, unfortunately his arterial line went bad last night and had to be replaced.

Last night and yesterday day a flood of new babies came into the unit so Aaron once again has a neighbor. Unfortunately he is a twin and his brother is down the hall. I feel bad that the two have been separated and the Mom has to split her time between two rooms. If Aaron wasn't attached to so many machines I would volunteer to have him switch places with one of the twins so they could be together.

Today Aaron's belly is bigger. He also gained 90 grams over 24 hours which looks to be fluid. The hole in his side has now healed over so there is no longer a place for the fluid to drain out. His urine output has also slowed down again. This concerns us a great deal. He also is waking up and looks to be restless and agitated at times. The pharmacist tells me his methadone won't be fully effective until he hits its peak which will be sometime on Monday. They continue to wean the morphine but today they upped his Adavan levels so hopefully that will help. He is a little higher on his FIO2 today (30) so they decided to wait another day to wean his milrinone. I was not too concerned about this as it really depends on the nurse whether she decides to turn it down. His limits are set so high that when it alarms it only alarms for a short time as it will only alarm when he is at 99 or 100. Most of his nurses watch the monitor and if he is consistently at 97 or higher they will turn him down. Today's nurse was only turning him down with the alarm and only if it alarmed for a while.

Aaron doesn't seem to be having any problem digesting his feedings as he is stooling with each diaper and has little or no residual in his belly at each set of "cares". He was moved up to 15 mls (3 teaspoons) last night and continued at that today. He is getting about 75 calories between his TPN and breast milk. The magic number is 80 so we are almost there, hopefully tomorrow. We are hoping that once he is taking in at least 80 calories his body will start to flush the fluid through his renal system. His CRT was 43 this morning and if it drops below 40 tomorrow he will most likely get a transfusion followed by lasiks. Today is also the last day of his antibiotics. 28 days should be sufficient to kill off anything they think may have been growing. We will watch him the next few days to see if this has made a difference. Now that those are off and his TPN gets reduced as his feeds go up we are soon not going to have enough fluid to put through all his lines. We will see which line gets pulled and how long we can keep it off.

Photo Shoot

2011-08-17T17:51:00.000-07:00

Here's the latest from the nurses. This is hanging over Aaron's bed. We love them!

3 MONTHS!

2011-08-17T07:38:00.000-07:00

Aaron turned 3 months old yesterday. I completely got sidetracked yesterday and failed to take a picture. I will remedy that today! Aaron's heart medication continues to be weaned and his feedings continue to be increased. He is up to 10 mls. every 3 hours. A little less than half of what he was getting before he started downhill. So far he is tolerating both well. With the change over to methadone he isn't awake as much as he was before, I miss that but I would rather he sleep and heal. They are no longer replacing the fluid leaking from his side, it has slowed down considerably. His CRT was low so he received blood yesterday afternoon. His urine output has picked up some and he is pooping regularly, we hope that continues. He has a few red spots on his head and back which look like the start of pressure sores. We are doing our best to keep him off those areas but its not easy. Today he will receive an eye exam to see if there has been any damage to his eyes from the flolan and other treatment he has received in the last couple weeks. This is not an easy exam and will most likely make him upset enough to split some so we will just have to watch him closely during the exam. Yesterday his FIO2 was consistantly at 21-23 all day. They turned his mean down by 1 and he continued to stay low. He'll have a chest film this morning to check on his lungs and then we'll see what they decide to do today. Baby steps seem to be working so far. Forward......

It's A Go

2011-08-15T14:47:00.001-07:00

Aaron's echo looked good today. Only left to right shunting, and full heart functions. He continues to have thickening in his heart muscles but the hope is that will either diminish or he will eventually grow into it. The question of when to ligate is soon going to be the golden question. Today in rounds they have determined he is ready to wean the milrenone, very slowly. Only about 10% and we will see how he does over the next 24 hours. The hope is to be off by the end of the week. His feeds have been increased to 8 mls every 3 hours which is sufficient to put sildenafil in although we are waiting on that until the milrenone is off and he is doing well. Aaron will most likely have another echo sometime this week to make sure his body is handling the wean alright.

Return of Puppy, Welcome Duck

2011-08-14T19:56:00.000-07:00

Now that Aaron is doing better we thought we would bring the puppy photos back. During this time we added Duck. Aaron seems to really like Duck and so do the nurses, so welcome Duck!

Aaron was weighed yesterday and came in at 2430 grams, 800 grams down from his biggest weight. Down over a 1 1/2 lbs. He has about 2 more pounds or about 1000 grams of fluid to lose but he is looking soooooo much better. He is doing well on the Drager, the nitric is off and the tanks removed from his room. So far the most he has shunted right to left is 6 and that is only during "cares" where we are really messing with him, and it has only happened once. We are anxious to see his echo results tomorrow. Both Ronny and I decided it was important for me to be at rounds this morning with the new doctor so I sent him to church with the kids and headed up. Things were pretty smooth today and I was able to discuss Aaron's course of action with him. Ironically they did not round on Aaron until after 12:00 so I could have gone to most of church and still made it or attended the sacrament service at the hospital. I'll know that next week.

Assuming the echo looks the same or better they will start to wean his milrenone tomorrow. He said they will do this very slowly and keep a close eye on him. I told him he was my kind of doctor, although the last doctor did a great job with his new ideas! His feeds were increased to 4 mls every 3 hours today and his fluids kept at the same level. He is tolerating his feeds very well so far. His urine output has increased and his catheter was removed yesterday. His morphine has been set to PRN (as the nurses feel he needs it) and his standard narcotic has been changed to methadone. (Yes the same stuff they use for heroin addicts, its long lasting, and yes I did call my bro-in-law about it!) . Today he got both methadone and morphine as they were making the change so he slept most of the day. Ronny is there now and said he is awake and alert and very calm. His side continues to leak but has gone from 100 cc's in 4 hours to about 25 in 4 hours so its slowing down. This is fine as we would rather he pee it out so that his body isn't losing electrolytes. His sodium levels are back to better numbers as are his glucose and triglyceride levels.

At the end of rounds the doctor came to me and said he was concerned about the 2 week Attending rotation with Aaron's case and had heard I was as well. I about fell out of my chair! I said I was. He said that before he goes off next week he plans to call in the incoming Attending and review Aaron's history thoroughly and make recommendations as far as a continued course of action and that before he goes off he and the new doc will agree on what that is and brief Ronny and I on it before leaving. Again, about fell out of my chair! I thanked him and told him we really appreciated it and that this was what we have been asking for for some time. He said he is very hopeful that our current course will work but that this week is going to be extremely important and will tell us quite a bit about Aaron's future. Instead of telling me how serious Aaron's prognosis is he just asked me if I understood everything, asked if I agreed with it, and was ready for the outcome. I appreciated the upbeat way in which he asked and told him that we were ready to move forward.

So here we go.....Forward!

p.s. Just got tonight's weight 2200 grams!!! Down another 2oo today! Forward.....

A Plan A Plan, We Have A Plan

2011-08-13T06:36:00.000-07:00

This has been one mighty big week for our little guy! We are thrilled with his progress! Aaron now has awake periods where he gets his eyes open and interacts with people and objects. He is doing well on the Dragger (conventional respirator) and his nitric oxide has started to be weaned and will most likely be taken off completely today. Yesterday for a 6 hour period he had a urine output of 3.3, better than any other time before. He may get his catheter removed today as he pees around it more than into it. His internal temp probe has been taken out as he has lost enough fluid that the sensors are picking his temp up again. His side is still leaking about 100 cc's in a 6 hour period as well. He gets that fluid replaced by half to try to keep his electrolyte levels up. His body is still having a hard time tolerating glucose and lipids so we are watching that. We are trying to get him up to 80 calories at least, right now we are in the high 60's and low 70's. Once he's up to 80 we know he is gaining weight and not losing it and hopefully that will trigger his body to release more of the fluid through his renal system. He is getting 1 ml of breastmilk every 3 hours. So far he is digesting that although his stomach fluid is a little odd, its making too much for how little he is getting. We are hoping to increase his amount as the days go by.

Before signing off yesterday our doctor set a plan in place and reviewed it with the incoming Attending. We have been asking for this a while now and finally this latest doctor pulled through for us and the incoming doc said he thought the plan was great and wouldn't change anything assuming all goes well. Hooray! Here's the plan: 1. Wean the nitric!!! This has been started and should be off today. Watch closely to make sure he is not shunting and keep him stabilized. After 48 hours of stablility get an echo (should be Mon. morning if all goes well)! Call the cardio guys back over to review everything and ask for their recommendations on weaning the milrenone. 2. Wean the milrenone how they recommend. If all goes well for 48 hours repeat echo. 3. Continue antibiotics for 3 or 4 more days and stop. 4. Restart sildenafil. Assuming all is going well Aaron's feeds will be steadily increasing during this time and should be able to have enough to put the sildenafil in his feeds. 4. Watch for 24 hours to make sure he is tolerating the sildenafil and start to wean slowly off the flolan. Get echos regularly to check for effectiveness. Call cardio back and decide what to do about the ligation. 5. At some point within all of this they may decide he is healthy enough to transport for a ct over at Primary's. After he is off the nitric he is able to go across the bridge. 6. Sometime, when his fluid is no longer an issue and his hypertension shows to be under control with the medication he will be extubated and put back on one of the many other breathing machines. We are hoping to go back to the high flow or another new machine they will be getting next week.

If Aaron continues to flush fluid and continues to be stable I will get to hold him again and hopefully give him a sponge bath. He really stinks! We messed with him quite a bit last night, changing his sheets, cleaning out his rolls, changing his diaper twice in one period, changed his leads, and weaned his nitric. He went up on his O2 and shunted a little bit which was to be expected but nothing over 50%. At some point his bed will need to be changed out. It is way overdue!

The atmosphere around Aaron's room is so different these days. Every one is grinning and in a better mood. Every time he gets his eyes open and starts to interact, someone runs for a camera. They have taken several pictures on the hospital camera and will burn them for us, others just take pictures on their phones and send them our way. We have watched several families we have gotten to know taking home their little ones. We cheer for each of them and know we'll be losing a few more families soon. (I shouldn't say losing, that's not a good word, graduating that is so much better). We have developed friendships with so many and love to see the progress each of their little ones are making. Progress, its a beautiful thing!

Happy Birthday Big Brother

2011-08-12T06:09:00.000-07:00

I can't say this enough, we truly have amazing nurses! I mentioned it was Joseph's birthday yesterday at the hospital and they sent this to me yesterday afternoon. Joseph loved it! Aaron gave his big brother a wonderful gift, he opened his eyes up and lost 700 grams of fluid in a day. The great majority of it came out of his side and his head, not really what we want but its gone and he was a happy boy yesterday!

9!

2011-08-11T18:49:00.001-07:00

Yes he is 9! Happy Birthday Joseph!

This year Joseph has been asking for wiffle balls. He asks often because every time he gets any he manages to hit them on the roof of our neighbors within minutes of taking them outside. A new rule has been set that if you want to bat the balls, you must do it at the park. Our yard is great for playing catch, a full game of ball, not so much! (I asked someone at Walmart where the wiffle balls were located, she didn't know what they were and even after describing them she looked at me like I was speaking jibberish. Seriously, who doesn't know what a wiffle ball is???)

The sweet amazing nurses taking care of Aaron today made the sweetest sign wishing Joseph a happy birthday that they had Aaron hold. They took a picture and sent it to my phone. I am in the process of getting that onto our computer (Steph can you email those to me????). Aaron had both eyes open today and so the picture taking has once again commenced and the nurses wanted to include Joseph in the excitement! (more on that later)

Joseph has been a great big brother, especially to his newest one. Joseph is constantly asking about Aaron and prays for him several times a day. He does stir up mischief but always wants to make sure others are happy. He is a top notch negotiator. Last year in the ER when the nurse needed to give him an IV he demanded that she wait until all his arguments for not getting one were exhausted. He had several!!!

We love you Joseph and hope you have a wonderful birthday even in the midst of all our chaos!

New Ideas

2011-08-10T19:08:00.000-07:00

Today has been a busy day here at the hospital. (First let me thank Jennifer G., Mom, and Mickie for taking my kiddos today so that I could be here, you guys were lifersavers today!) A new Attending came on today and had lots of changes in store for us. At one point my jaw dropped with a few of his recommendations and thought, "Oh no here we go again". There was quite the discussion in rounds between R.T., pharmacy, the n.p. and him. I stood and listened and commented occasionally. Things got a little heated a few times. When a couple of his ideas were met with significant resisitance he sighed and said, "look everyone status quo is not helping this little one, we need to find new solutions." He made a good point, doing nothing is not getting Aaron better. After rounds he pulled me aside and said that any of these changes could put Aaron over the edge and we may not get him back and asked if I was comfortable with what he recommended. I told him I needed a few minutes to think and to talk to Ronny. We talked and decided to go forward. We feel that we would rather work towards making him better and possibly loose him in the process than to stand by and watch him continue to deteriorate. I returned to speak with the Dr. and told him to go forward but at any point I felt uncomfortable I would stop him. He agreed, so forward we are going.

His changes have included: tapping his abdomen (inserting a needle and drawing fluid out), taking him off the oscillating respirator and moving him to a jet today and hopefully by Friday a conventional respirator, upping his calorie and fluid intake, and stopping the dopamine. He feels that each of these will help him to start to flush fluid, the tap obviously to draw fluid off and then test it for infections, the change in repirators to allow his heart to fill better, and upping the calories so his body comes out of starvatioin mode. He also recommended that the antibiotics be stopped tomorrow pendinig normal levels from the abdominal fluid. (More to come on that topic!)

I was in the room for the tap (in my designated corner) and watched him draw multiple syringes of fluid off, 110 cc's approx. I watched Aaron's monitors closely and he did great through the procedure and then immediately high stated after, allowing his O2 needs to come down to 23. Just after the tap, Infectious Disease made their daily rounds. I spoke with the I.D. Attending and he recommended that Aaron have laproscopic abdominal exploration. He had called the surgeons and wanted them to come and evaluate immediately (he called the same surgeon Sam had). That made me extremely nervous! He examined Aaron again and just as he was finisihing our Attedning came in. The two of them started a conversation which was extremely interesting. They both had valid points for their point of view and I agreed with mostly everythinig each of them said. I really felt like they were both committed to helping Aaron and having the back and forth discussion was heartening to know that they were truly trying to figure out a solution together. In the end surgery was called for a consult but they agreed to hold off on anything until he is less edemedas. I was fine with that. They also discussed removal of the antibiotics as early as tomorrow night but want to wait and see how things go and see what the test results look like.

In the end Dr. Barnhart (Sam's surgeon) wasn't able to come as he was stuck doing another appendectomy (go figure) so one of his residents came. He did his thing and eventually came over and started to ask me questions about what had happened with Aaron. At one point he asked if I was a nurse, I laughed out loud and told him no but that I have learned a great deal in the last 3 months.

So as of right now Aaron's urine output has improved. Still not to where we want it but enough to start making a slight improvement. At this point he has lost 280 cc's of fluid from where he was tapped today, (its been a bit leaky to say the least!). The hole where the needle went in is still open as all the fluid is now trying to rush out. Unfortunately leaking too much fluid is a problem as we now need to watch his electrolyte levels. We would much rather have him pee the fluid off. His blood pressure is high so we need to keep that under control. We think its pain related so we are trying to find the right thing. He was changed from morphinie to a fentinol drip in hopes that will work better.

Its been a long day and will be another long night and there will most likely be several more long days ahead. Today though we are relieved these big changes have gone smoothly and are crossing our fingers and saying our prayers that they continue to do so.

It Weighs Heavy....

2011-08-09T14:38:00.000-07:00

Three posts in one day, a little nuts but we've had a lot going on. When I arrived at the hospital today the Infectious Disease Attending was waiting for me outside Aaron's room. He presented Aaron's case to the rest of the I.D. Attendings and asked for suggestions. They have decided to change another medication to something different and to call in General Surgery for a consult. He really feels at this point Aaron has a perforated bowel or an infectious abscess that will need to be surgically drained. Surgery for him is not an option until he starts to get better, however but he wanted the consult to see what they had to say. Their hope is that these new drugs will help him improve enough to where he could survive abdominal surgery. The ultrasound was done today and we are still waiting on the results although everyone seems to have a consensus that ultrasound will not pick up what we want it too, that the ct scan is really what he needs.

Today was also Aaron's care conference with the out going Neonatologist. It was not the kind of meeting I had envisioned and I certainly didn't leave with a clear understanding of what the next few days will hold so I'm not sure yet how I feel about it.

The doctor started by explaining in detail a condition called BPD and what pulmonary hypertension is. He then spelled out the survival rates of both and what they are together. Then he told us Aaron had BPD, the hypertension we already knew. We also talked about Aaron's current condition, the severity of it, and our options. What it boils down to is this: Aaron is once again on the fence. With the new drug changes he still has a chance. This doctor has given him a week to show signs of improvement. If he does not improve in a week he most likely will not improve and we will have to make the decision how long we will sustain him on life support.

Assuming Aaron does improve over the next week, his long term survival is mediocre at best. With both BPD and hypertension, surviving to 6 months is about 65% and then to age 2 is 20-50% of those who survived and then to age 3 another 50% of those who survived. With all the medication he is receiving, withholding his feeds and being calorie restricted, and the time he was at low O2 stats this last week for so long also factor in to what kind of quality of life he will have if he does make it long enough to come home. We are no strangers to statistical data and what that involves, nor are we strangers to overcoming those odds, yet the reality still weighs heavy on us.

After the meeting I was able to stand by Aaron's bedside for just a few minutes before needing to leave to pick up the boys. His body, and face especially, are significantly bigger than even yesterday. His skin has started to crack and bleed in several places which we were hoping to avoid. His edema no longer allows him to open his eyes. They have now maxed him out on blood transfusions as his CRT is 57 and they didn't want it over 55. His urine has picked up and is averaging over 2 but we really need it up somewhere between 6 and 10. We pray these medications work and work quickly.

Edema to the Extreme

2011-08-09T11:05:00.000-07:00

I originally was not going to post this but now that our kids have seen him and now that really he is even bigger I decided to post it. This is a picture of Aaron about a week and a half ago. Since this was taken he has added another pound of fluid under that already taught skin. The diapers do not fit around his belly and depending on the day you may or may not see a belly button or even his eyes open. When we rotate him one side of his face will get the majority of the fluid and he won't be able to open that eye but will try to get the other open. He still responds when we are there talking to him which tells us he is still fighting to be here. What a will to live this little one has. He truly inspires me to get through each day!

Infectious Disease

2011-08-09T07:25:00.001-07:00

After dropping Ben off at school I headed up for my hour of time with Aaron. Unfortunately I didn't get much time to spend with him because I was talking with doctors, n.p.'s, and nurses the entire time. Aaron had an echo yesterday and the results were predominantly left to right shunting and small to moderate PDA. They did not mention anything about his paracardial infusion or his VSD or anything about his hypertension so I assume they are not an issue at this time.

Just after I got there and spoke with the n.p. a resident from Infectious Disease from Primary's came to see me. She wanted another history of the fam (did this twice already) and then she examined Aaron and then said she would be back shortly with the Attending. 15 minutes later they came back with 2 more (4 total). I spoke with the I.D. Attending who agrees with the cardio guys that Aaron certainly has an infection or virus of some kind. He thinks its in his abdomen somewhere and wants a ct scan. A ct scan would mean a transfer to Primary's and contrast. Two things Aaron can not do at this time in his current state. So an ultrasound was ordered instead, both of his gut and his head which will be done this morning. He is also testing for CMV a virus common in IUGR babies although he doesn't think that is what he has. We talked about all the septic work ups Aaron has had and agreed with me that most likely Aaron has been sick for a lot longer than we had originally thought and that all those times he started and stopped antibiotics was just masking the problem and making thins worse. He changed one of his medications to one that focuses on his gut and recommended that we do not stop treatment at the 21 day mark that was originally planned. After all that he asked if I had any questions and then said he or someone from ID would be over to check on Aaron everyday until he was better. Love it, didn't even have to ask this time!

Today is our care conference with the staff in preparation for the Attending change tomorrow. The nurses and I were joking about how to safeguard Aaron's flolan so no one is tempted to stop it. We have 3 official primary nurses and about 4 more that are regulars as well (they would be our primaries too if we were allowed to have more but they get around that by requesting him). We know at least one will be at the conference if not more as they have said they want to be there too. We really do appreciate all they do for Aaron and for the care and love they give him. I know he is well cared for while I'm not there.

Ronny went in last night to read to him. I stayed home to help with math homework and get the kids to bed. Aaron is very sick but seems to be doing a little better. His chest films are looking better. They have turned his mean down and his hertz up on his respirator and he is tolerating his "cares" so much better these days. He has received a lot of blood in the last couple days so he is very pink. It seems that getting blood helps his kidneys profuse better and we get more urine in his diaper and out his catheter, still not enough, but better none the less.

Kidney Function

2011-08-07T11:27:00.000-07:00

Aaron's nurse noticed yesterday that he was having a hard time keeping his core temperature up. She looked in on him and noticed that his sheets were wet. She called in the nurse practitioner and together they changed his sheets. While doing so they also weighed him. Aaron's current weight is approximately 2500 grams. This puts him just over 5 1/2 lbs. Unfortunately that is not such good news. In the process of changing the sheets and weighing him they realized the sheets were wet because his skin has started to weep. Aaron's reference weight is somewhere around 1500 grams although they are using 2000 grams to figure his prescriptions to make sure he is getting enough medicine. He is carrying at least 2 lbs of fluid under his skin. This has made his skin very taught and extremely painful. They have tried a few different ideas to help him flush this fluid but they don't seem to be working, certainly not the way they want it too. This tells us his kidneys and capillaries are not functioning properly.

The doctor tells us he is pretty sure these events have stemmed from some kind of infection although they don't know what kind. They have decided to keep his antibiotics on board for 21 days. I think that will be up on Thursday. Infectious Disease has been called in once again for any ideas. This week's Attending has told us treating Aaron is much like a series of Trial and Error. I feel like we have been doing the same trial and error way too much lately as we seem to be doing the same things and only having errors and no successes. Aaron has another echo on Tuesday to make sure his hypertension and heart continue to be stable. This Attending goes off rotation on Wednesday. They have called another Care Conference to square away the plan of action before he leaves and the new one takes over.

I spoke with the nurse practitioner about what was going on and some of our frustration with the "Attending Shuffle" we now refer to. We have been here long enough to have gotten to know most of them and how they are differ in opinions and personalities. Like the nurses we have our favorites. Hopefully one of them will think up a solution. That is our prayer today.

Kindergarten, Diapers, and Ward Fast

2011-08-04T17:36:00.000-07:00

Benjamin started Kindergarten this week. His first day of school we walked over together. We entered the play area and waited for the teachers to come outside to blow the whistle. I looked around and saw many children playing, some standing on the outside of the equipment to shy to jump right in, and others clinging to their parents legs not wanting to separate. Then I look over to see Ben pounding on the door and begging to be let in because surely it was time to start! Each morning after the big boys head off he recites the time on the clock to me every 2 minutes wanting to know how much longer he has to wait to head to school. I wonder how long this will last.

Ben is in the afternoon session which makes my daily visits tricky and way too short. During the week I drop Ben off at school and head straight to the hospital. I am only able to spend about an hour before I need to head back down to pick them up at school. Today I read to Aaron, changed his diaper, and helped readjust his position. He is not a big fan of the repositioning. He opened he eyes up, gave us the evil eye, stuck his tongue out, and then de-stated and shunted. I don't mind the "look" or the tongue, but the de-stats and shunting I mind! He usually comes right back down within 15-20 minutes but I would rather we didn't have to turn him up to 100% on his O2. Before leaving I had a quiet talk with Aaron. I told him how important it was for him to pee. His body is so stretched and full of fluid it hurts to think of how much he is suffering inside.

Our ward Relief Society secretary sent an email out this week that mentioned the ward was asking members to fast for Aaron and another young man with cancer this coming Sunday. I was very touched. I mention this so that those who wish to, can join with us.

Another Turn

2011-08-03T10:13:00.000-07:00

Just as we were starting the bed time routine last night a call came in from the hospital telling us we needed to come right away. We called my mom and left within in minutes. When we arrived we found Aaron blue and thought we had lost him. He still had a heartbeat put his oxygen stats were in the 50's with 100% O2. It took about 6 hours and the start of two of the drugs he had been weaned off of to get him somewhat stable again. He had another echo last night that told us his hypertension was back. We stayed all through the night once again just in case. My mother took our kids back to her house and got them ready for school this morning. Today is Ben's first day of kindergarten.

Ronny and I stayed through rounds today. We were pretty frustrated that he had been weaned so quickly once again and we told the Attending that. The Attending said there should be a sign placed on his bed not to wean him off his pht drugs no matter what the echo says. (Funny, I thought we had established that already, yet here we are again!) At the end of rounds the Attending turned to Ronny and I and told us that there were two kinds of kids with hypertension, ones that will clamp down and recover quickly after just one round of medication and the other set who don't seem to get better after repeated treatments and they tend to be more critical when they clamp down. Obviously Aaron fits into the second category. He says that sometimes these kids don't ever get better and don't ever go home, but they haven't given up on Aaron yet. I told him that if we could just get him over whatever is making him sick and get this edema off him I think Aaron would do so much better and likely recover after a ligation from the hypertension. I told him though that until that time comes not to take him off the meds!

This roller-coaster ride seems to only have loop-di-loops at the moment. We are all getting dizzy. I worry about what this is doing to my big kids. Ronny and I pray each night for the Lord to watch over them and guide us as parents to help them through this journey of ours.

We're Hiring Developers

2011-08-02T10:16:00.000-07:00

We're hiring developers (again) at my company, Lead Media Partners. If you, or anyone you know, has experience with Ruby/Rails/Clojure and would love to work with awesome people for a great company at the foot of the Wasatch Mountains (we're in Draper, UT), let me know.

Best Phone Call Ever!!!

2011-08-01T16:32:00.000-07:00

This week's puppy photo. Aaron's appearance is rather shocking at the moment. I am afraid that if our kids were to see him right now it would scare them and possibly give them nightmares. This is the bank of pumps giving Aaron all the medications he needed to get through this weekend. Two of the pumps are off at the moment and one had already been taken away. At one point he had 11 pumps running at the same time and 6 lines going into him. This picture has already given me nightmares!

First day of school 2011. Can you see how excited Joseph is to start school again!

This is a photo of Aaron last week before he was re-intubated. You can see his face had already begun to swell at this point. His face and body are about 4 times the size he is in this picture.

I headed up to check on Aaron this morning to find 8 different people in his room. I turned around and realized 4 more had filed in behind me. Its hard not to get nervous when that many people are in your son's room at the hospital. 2 of the people were in readjusting one of Aaron's pic lines. One was his nurse for the day, one was the Attending, another the pharmacist, respiratory therapist, fellow, and nurse practitioner. The 4 who followed me in were cardiologists from Primary's. Yes 4 of them! (I wondered if they were all here, who was left over at the other hospital???) Even with Aaron being the only baby in the room it was a bit crowded! They were right in the middle of rounds when I arrived so the n.p. quickly caught me up.

Aaron had an echo early this morning, they discontinued the dopamine, had plans to wean him down on two more of his heart and lung meds depending on good echo results, give a transfusion, and give more lasiks to try to flush more of his fluid out.

After rounds were over most of the people left and Aaron's n.p., nurse, me, and the cardio team remained. The Cardio Attending came right over introduced himself, shook my hand, and expressed his sympathy over Aaron's illness. I about fell over in shock! This guy was great! He spoke to me directly, asked me questions, gave me his recommendations and said he would continue to follow up through out the day as the echo results came in. Two of the fellows he brought with him also examined Aaron and asked me a few questions. When they excused themselves I looked over at Aaron's nurse and he shrugged his shoulders and said, "Well, you don't see that every day!"

After things settled down I read to Aaron. I have been reading him Treasure Island these last few weeks. Today we finished the book. At one point I looked up to see Dr. Yost the Attending who was on over the weekend. He had come in to check on how things were going and see what the plans for today were. I said hello and he asked how we were doing. When he left Aaron's nurse said he was amazed at the attention Aaron was getting. I asked him what he meant by that. He said Dr. Yost had actually been in 3 times that morning to see how things were going, Dr. Yoder the head of the department had been in, every n.p. who was on came to see him, every o.t., and every nurse who had ever had him that was on today had come to see him as well. He also said there were several nurses requesting to have his assignment. I laughed (laughing is better than crying!) and said his rock star status may just go to his head. He said "rock star" was absolutely the right term for him and that anyone who has been near him has been touched by his little spirit. He also said that if Aaron continues to improve he would most likely get a neighbor tomorrow. I told him we were happy not to be "critical" anymore and that "stable" was a great place to be today!

This afternoon a phone call came in from the U. I couldn't help but cringe and take a deep breath. Aaron's n.p. was calling with his echo results. His echo showed that his pulmonary hypertension was no longer present, his PDA was down graded to moderate, he had only left to right flow, his VSD was diminishing, and the function on both sides of his heart looked normal. I was shocked and said she could not have called with better news! The plan to wean him off two of his meds had already started and so far he was tolerating them really well. His FIO2 was down to 25! Unbelievable!

Another Day

2011-07-31T12:41:00.000-07:00

Aaron has decided to keep playing the game of life it seems. He weaned off 3 of his meds yesterday beautifully. Last night they began weaning the setting on his respirator. That made me nervous. His 9:00 p.m. cares were dicey and he did not tolerate them well, especially being suctioned. He went way up on his oxygen needs and his nurse had the RT turn the machine back up. This morning's cares went about the same except he needed 100% oxygen. The doctor wanted to start weaning him down on his nitric back to his original settings but Aaron's stats were not picking back up all through rounds. A chest film was done this afternoon to look at his lungs and it looks like when he gets suctioned his lungs collapse a tad and with the pressure on the respirator turned down he has a hard time opening them up again. The order came in to turn the machine's pressure back up just so they can keep the pressure up on the lungs to prevent the pressure from the excess fluid to collapse them. A blood gas was done to see how things looked and he had his best results in days after the machine went back up.

They ran tests to see if his sodium levels are higher. If they are he can start receiving lasiks to help flush the fluid out. His renal system seems to be starting to work better as last night his urine output increased although not enough to overcome the fluid he is still receiving. Last night the nurse heard bowel sounds for the first time in days as well. The doctor said today that if Aaron continues on this course of recovery then they will start to re-introduce food Monday afternoon or Tuesday morning. They will go much slower this time as they will have to coax his bowel system to start up again.

The paralytics were stopped yesterday and he is starting to wake up. He is not very happy when he is awake as I'm sure the pain from the fluid pressure is extreme. Today we saw his belly button again and he started his forehead crease when he's upset. He is also starting to be able to move his arms and legs and he immediately put his hands to his face. His poor little tongue and lips are so dry. Ronny and I have been wetting a small gauze square and allowing him to lick water and saline off of it. He really likes that. His morphine has been put on a pump so that every two hours they turn on the pump to deliver his dose instead of getting in and bugging him. We love that he is waking up more and opening his eyes, mind you he is giving us a look like "what happened to me", but the fact that he is looking at us and responding is wonderful. Every one from the unit, staff and other parents we have met, have been coming to check on Aaron. Several of the staff have shed tears with us and sat in the room with us as we watched over him. After Aaron was starting the recovery process several of them stated they couldn't sleep at home after their shift and many called repeatedly to get updates. They said they were so worried they would come back to work and his name would be gone from the board. This little one is so loved and I pray someday I will be able to tell him how much that is. I also want to tell him how much he has scared us all when he misbehaves as a teenager!

We felt that after he started to come down on his oxygen needs today that we could finally leave the hospital for a time. I made my way to the car to find out it wouldn't start. Nice! Turns out when the dome light in the back gets left on for three days the battery dies, hmm imagine that. Because of the way the van was parked we couldn't get into jump it so we had to call the tow truck. An hour later we were finally headed out to go pick up the kids and head home.

Today is our 13th wedding anniversary. Happy 13 to my great husband. I sure do love you and am happy we are able to lean on each other during this chaotic time.

We Made It Through The Night

2011-07-30T09:44:00.000-07:00

Aaron is very much on the fence post deciding whether or not he wants to stay with us or return home. We were told yesterday or was it Thursday (honestly I can't remember the days) that the next 48 to 72 hours were critical and we would soon find out what side Aaron wanted to be on. Yesterday afternoon I was asked to give them orders on what life saving measures we were willing to do for Aaron and when we would allow him to go. That was a very difficult conversation and one I obviously need to make with Ronny. We had talked about it vaguely at breakfast yesterday but I didn't expect it to come into play that afternoon. The nurses scheduled one of the parent rooms for us during these next crucial hours so we will not have to leave the hospital. They have pretty much allowed us to stay at all times and come and go as we feel comfortable.

Yesterday Aaron had another echo done and the cardio team came over to check on him without being called over (I think my message was taken seriously this time!). The echo showed good heart function, bi-directional flow through his PDA, and fluid around his heart. They did not feel the fluid around his heart was causing any adverse function to the heart. Two days in a row the echos showed promise that his heart was working. The problem now is that as they are pumping him full of fluid to get his blood pressure up the fluid is not staying in the vascular system, its what they call third spacing, staying in the tissues where its not helping his blood pressure and not being able to be peed out so he body is swelling. That fluid is also making it hard for him to breathe and is very painful.

When I arrived at the hospital I was asked to join a meeting about something that happened overnight. I will explain more about this at a later time. After that was over we held another mini-round session with the night Attendings. Another drug was added and the plan was to try to wean him off his dopamine. We were told his blood pressures would be erratic but that we needed to get his heart rate down. Aaron seemed to be doing really well with the new drug and the weaning process.

In the early hours this morning we felt like Aaron was doing well enough that we could try to get an hour or two of sleep. I came to check on him about 5:45 and he was doing well so I told his nurse that if nothing happens to just come and wake me up when she is getting ready to leave so that I could say goodbye. About an hour later I woke up feeling as if I was having a panic attack and couldn't seem to get my heart under control. I went to check on Aaron and knew something had just happened. Apparently Aaron was having the same panic attack and his heart rate shot up to 258 and just as I asked what was going on the masses arrived with the crash cart. I whispered to one of the RTs to go get Ronny. After she left the Attending arrived and very excitedly looked at me and said, "Don't worry, I expected this, this is a good thing!" I pretty much thought he was off his rocker but Aaron quickly stabilized and the new Attending who also had just arrived and the "excited" one conferred and decided it was now time to start weaning another drug. So two of the drugs Aaron was maxed out on yesterday are half of what they were before and coming down. His bp is maintaining a mean of between 35-45 with no shunting issues, his heart rate is slowly coming down and is averaging between 175-190, and his O's are anywhere from 29-35. 29! We haven't seen that number in a month! He is not out of the woods yet and we really need to get this fluid level under control but he is slowly improving. Ronny and I plan to stay at the hospital until he is out of the woods and we feel comfortable not being there all 24hrs a day.

In rounds today we were discussing possible reasons why this has occurred. The cardio team is positive its an infection or fungus, yet we can't seem to get any cultures to grow nor are his white cells or crp elevated. The Attending on today feels as if it may be an inflammatory response to something we haven't found yet. This makes sense to me as the reason Aaron was so severely IUGR was because I had an inflammatory condition that caused problems with the placenta. Today's Attending happens to be doing research on inflammatory conditions and abnormal immune responses in NICU babies. (Hmmm, how ironic!) After rounds the n.p. stayed behind to talk with us and his nurse. Ronny and I were commenting on how this seems to be a pattern with Aaron. He goes to the very edge, to the point the doctors are saying we've come to the end and then all of a sudden he has an "spontaneous resolution". His n.p. laughed and said today was a great day to have a "spontaneous resolution"! She looked at us and asked if we could order one of those up from the Lord. We told her we would get right on it! So friends and family, that is what we need today. Pray for a spontaneous resolution! :)

Before I sign off I just want to thank you all again for, your notes, packages, meals that have been brought in, taking and picking our big kids up at a moments notice, your kind words, and hugs. Mostly I am thankful for your prayers. Those are truly what matter most to us, for those prayers are really what has taken us so far. I have no doubt the Lord is hearing and answering our prayers and has blessed our family on behalf of you.

A Long Day

2011-07-29T07:12:00.000-07:00

Yesterday morning after my big kids went off to school I headed to the hospital. I walked in to find Aaron hooked up to the original ventilator he started on at birth, the oscillating machine. I was somewhat annoyed as I had not gotten a phone call regarding the change. Just after arriving Aaron's team came in for rounds. I called Ronny and put him on speaker phone so he could join in as well. The orders were to try to insert another pic-line and go for a double-lumen and if that didn't work to call the surgeons in to put a chest tube straight in (there is a name for this but I can't think of it at the moment). They also added a number of drugs maxing out the pump capacity on two brains and later last night adding a third brain with two more pumps.

I told his team that I was extremely frustrated that things got so bad so quickly and that I felt the three days he went without the heart and lung medication put him on this course of deterioration. I told them I was upset that the cardiologists had not been called in sooner and that they should have been consulted before going without the meds. I also told them that going so long without an echo was unacceptable and that when the plan to do echos every week they need to be scheduled, with or without holidays. I told them I wanted a course of action set in place so that when the doctors and nurse practitioners and nurses change there is still a continuity of care. I told the team that the attitude of "well it could be worse" from the cardiologists who last saw him was unacceptable to me as at this point he is not only worse, he is critical. He is more sick today than he was the day he was born and that I was not ok with that either.

The star nurse who does the pic-lines was on yesterday. She set up her equipment and then stopped and looked at each of us and told us that before she started she wanted us all to say a prayer that things would go smoothly. I told her I could order up prayers and started texting the request out. She did her magic and was able to insert a double line in where really one should never have been able to go. She is amazing! This double pic added to the single and arterial line Aaron already has and allows them only to poke him for blood transfusions.

The cardiologists finally meandered over about 3 in the afternoon yesterday. I think there is some unspoken rule that they must whisper and talk among themselves in secret. I was mighty frustrated when they left the room to chat in the resident corner outside the Room 2 doors as I had told the n.p. that I wanted to be part of the conversation. When they returned I asked if it was better to move Aaron over to Primary's where they could keep a closer eye on him. They said he was too sick to move at this point and that we should just call when we wanted them to see Aaron. I was frustrated at that as that doesn't seem to be happening. I also asked him how often he should be getting echos to check on his progress. He said when Aaron needs it. That really doesn't tell me anything. So after they left I asked to see the Attending and nurse practitioner. I again expressed that this attitude of "when he needs it" doesn't work for me. The reason it doesn't work for me is because the Attending on is only here for two weeks and then goes to a new assignment. Then it takes about a week for the new Attending to get to know Aaron's history, they usually come in and on the first day change several things the previous doctor had ordered and I feel like after a week we start to see if things are working or if they need to be changed, then the doctor leaves and we start all over again. I told him that if there was a set course of action then we could limit some of the changes and delay when the new doctor comes. Then as things need to be tweeked or changed they can see where we are on the course of action and we don't have to start from the beginning again. Dr. Chan agreed with this and we are setting echos to be done every Tuesday that will get scheduled on the computer, regardless of whether its a holiday, and then more often if we feel they are needed. I told him that the cardio guys said to call when we want them there so I said I wanted them called at the very least every other day. They said to call so lets call. I know the Attending is doing all that he can but at this point the more eyes looking at my boy the better. My greatest fear now is that I waited too long to call this conference and demand a plan. They tell me he will get better in a few days, its hard to see him and think he has a few days. He is maxed out on his drugs now and is struggling to keep his blood pressure up.

Even with all the chaos and changes that were made yesterday Aaron is critical. They have started to give him paralytics as he fights the respirator and when they need to do a procedure they need him to remain still. His abdomen is swollen to about 4 times the size it should be and he really looks terrible. A catheter was put in so that they can empty his bladder as the paralitic won't allow him to pee on his own. Most of the fluid is in the tissue though and until it comes out he will remain distended. I know that we don't want him to fight the respirator but a part of me takes comfort in that, it tells me he is still fighting to be here.

I have come to the point that I know we may have to make the call to stop treatment. That terrifies me. What scares me more is that in the effort of trying to save him we are keeping him here longer than he wants to be. As long as I see him fight the machine, I know he wants to be here. I worry that when I am home I may miss the sign that he is done or even worse that he goes while I am not there. Again this juggling act of when to be home and when to be at the hospital becomes even more difficult.

Reading Time

2011-07-28T07:17:00.000-07:00

Last night in an effort to build more memories for my older children with Aaron we took the kids up to see him. We had each pick out two children's books and sat them by Aaron's bedside. They each read their stories and then sang him a song. It was the sweetest most precious time I have ever spent with my children. They were wonderful and told Aaron how much they loved him.

Our primary nurse was on last night. We talked about what happened over the course of the last week and what both of our frustrations have been. We have requested a care conference with the Attendings, Cardiologists, Nurse Practitioners, and his Primary Nurse. I am concerned some balls are being dropped and want to get things squared away. I'm frustrated with the "lets just see what happens" course of action and I want something more concrete. I was told by this week's Attending I need to be louder with my concerns, so that's what I'm going to do. I am going to be LOUD! I just hope its not too late to make a difference.

Slight Improvement

2011-07-27T15:11:00.000-07:00

Yesterday Aaron was requiring 100% oxygen on his respirator and the shunting difference on his pre and post pulse ox was anywhere between 10 and 20. Today his O2 stats are hovering between 38 and 60. The difference on his pre and post is anywhere between 0 and 10. Those two things have improved. Last night he was weighed and had gained over 100 grams which is troubling. We know its mostly water and air. He had a 42 gram urine diaper this morning and another 18 gram this afternoon. He stopped processing his feedings this afternoon so I asked the N.P. to come and look at him. His belly has once again swelled up and a KUB was done. It looks like its air so they stopped his feedings and reinserted an Anderson tube to suction off the air. Taking away his feedings means his sildenafil also gets removed. We are praying the flolan that he gets through his IV will make up for the missing sildenafil. I asked when they would do another echo and sounds like they want to wait another day or two.

Throughout our journey we have had so many wonderful highs and devastating lows. Throughout the low times I know I was nervous and worried. Looking back now though, I can't tell you a time that I was more scared and more worried than I am now. I don't know if its because I have learned to watch the numbers and know their meanings or if its because I have held my son and have physically felt the joy he brings to me. When Ronny was told last night that we should bring the kids to see Aaron more my heart broke not only for Aaron but for my other children. They have weathered this storm with so much courage and I can see they truly love their brother. My faith remains in the blessing Ronny gave to Aaron yesterday and the in the Lord who I know watches over us.

Once Again a Call For Prayer

2011-07-26T22:52:00.000-07:00

Aaron's echo results have finally come in. Things do not look good, in fact they can't get much worse. In the course of this latest infection Aaron's heart took a real beating. The pulmonary hypertension has become too much for his heart and it has started to fail on both sides. His blood is going the wrong direction and is not being oxygenated as it should. He is once again receiving all three PHT medications in hopes they can get a handle on it and turn things around. He is stable for now but we should know soon how things will play out. Ronny spoke with the nurse practitioner tonight who has recommended we start to bring our other children in to see Aaron more often. Ronny and a close friend of ours were able to give Aaron a blessing early this morning after he was intubated. All that can be medically done is being done. His life continues to rest in the Lord's hands and we are relying on our faith and prayers to see us through.

Wrong Turn

2011-07-26T09:18:00.001-07:00

A phone call came in at 4:00 am this morning telling us that Aaron had coded. They had to do chest compressions and re-intubate. Ronny and I got dressed called our wonderful friends and neighbors, one to watch the kids, and one to help give Aaron a blessing. He is sedated and stable. We could only stay a few minutes as we had to get back to get the kids off to school for their first day of the new school year. They are waiting on an echo to see what his heart looks like. They have him back on the NO2, sildenafil, and added a third drug this morning to see if they can't get his hypertension under control. We gave his nurses hugs as we could tell the one who he coded on was visibly upset. She told us they had a hard time getting him back and that she hasn't been that scared in a long time. He looked better this morning on the ventilator than he did yesterday on the c-pap. Crossing our fingers and saying a prayer this rest from breathing allows him to have the energy he needs to fight his infection.

Cakes, Puppies, and Sleep Overs

2011-07-25T08:44:00.000-07:00

This week I celebrated my 35th birthday. That day was a pretty tough day as it was when all of Aaron's labs, x-ray's, and changes were made. I spent all day at the hospital as each diagnosis came in. By the time I made it home I was spent both physically and emotionally. I think I do a pretty good job of processing and compartmentalizing things from the NICU. I often ask myself, "Is this something I need to worry about today?" If the answer is no, I file it away in the back of my brain to revisit when the time comes. Friday however it seemed everything was a concern on that day. Just after getting home a sweet sister from church called to wish me a happy birthday and ask how I was doing. I lost it, she was so sweet to listen as I just cried and dumped everything out. A few minutes later she showed up on my doorstep with an amazing German Chocolate cake and gave me a hug. Later we went to dinner, came home for two cakes (Ronny had also picked one up on the way home from work), and then we headed back to the hospital. I was so glad Ronny's mom was still here, as it allowed me to be at the hospital that day. Here is Aaron's puppy photo this week. With all the new equipment its hard to tell that in the midst of all his changes he grew quite a bit. He weighs 1350 grams (down from yesterday) which is just shy of 3 pounds. He grew at least 4cms in length and 2cms around his head. With him being attached with the c-pap and with his IV's its hard to take the measurements but the nurse did her very best. He remains sedated and the doctors are fairly certain he has a septic lesion in his intestine. His antibiotics are scheduled for a 7 day course. They did put a pic-line in yesterday as the drugs do a number on the IV's. The c-pap mask squishes his little face and looks so uncomfortable so its a good thing he's pretty out of it. Another blood gas was done this morning and the numbers are creeping up so they are watching the acidosis very closely. With Aaron being taken off all feedings he is not able to get his oral medications. The big one is the Viagra. Its a fine line we are walking with not feeding him to allow his bowels to heal and waiting too long that his pulmonary hypertension gets out of control enough that he'll have to go back on the NO2. Yesterday they told us he would start eating again today but they said that the day before so we aren't holding our breath that it will start up again.
Everytime I see a picture of Charley I wonder when she grew up. The other day at the pool a young man came up to Ronny and asked if Charley was his daughter, he said she was and the young man proceeded to tell him how pretty she is. He came home and asked if we could extend the time she would have braces. Honestly I think they even make her cuter. Sorry Dad, I think we are just starting this new phase of boys.

We took the kids in for a quick visit yesterday. As they each came in and talked to Aaron he began to high stat. He also was fighting to come out of his fog and see his siblings. It was very sweet. He knew his family came to see him and it makes a positive difference. The nurses are playing music for him. Every time the cd runs out he fidgets and fusses. Summer time brings camp outs in the basement. The kids love to sleep down there as Ronny and I pretty much leave them alone. The boys think we don't know how late they stay up and think they are totally pulling the rug over our eyes. When company comes to visit and especially if they have kids they beg to sleep downstairs. Last night we found they had blown up an air mattress and managed to get all 4 of them on it. The deal though is that if they are ornery the following day they have to take a nap. I love to see them together like this.

A Positive Turn

2011-07-23T14:30:00.000-07:00

Aaron's 9:00 p.m. x-rays didn't show too much change so his n.p. added two more antibiotics to his meds bringing him up to 4 different drugs trying to kill off the infection. His 3:00 a.m. x-ray showed an improvement. The radiologists and neonatologists believe its either NEC or a septic lesion of sorts in his intestines. X-ray's are scheduled every 12 hours now to watch it. If it turns out to be NEC he will be off his feeds for 10 days and on antibiotics for 21 days. If its the other he will be on antibiotics for 10 days and will restart his feedings tomorrow. The plan either way is to give him pic line tomorrow so they don't have to do IV's with his brittle bones. Aaron had an Anderson tube put down his throat to his stomach to vacuum out air, blood, and whatever else is in there, its not pretty watching it come out.

Aaron's meds have been cut back down to two antibiotics now as they feel like they have a good handle on things. We are hoping its not NEC as that is not something you mess with and we want him to be able to eat again soon and gain weight. He is being sedated pretty heavily at the moment because when he wakes up he is pretty mad, the one thing he had going for him was that he was a good little eater so when you take his food away he gets pretty upset, can't really blame him! He remains with his bed open and does a good job at keeping his temperature. He also likes music playing as it seems to settle him. I feel bad for the nurses listening to the same cds over and over again. I'll have to take a few more up with me next time to give them a break. His color is looking better and we hope we have made a positive turn.

While scrubbing in yesterday I heard my name called and turned to see one of my cousin's standing behind me. She has a friend with a baby in the same room as Aaron. It was great to see her and her cute pregnant belly and introduce her to Aaron. Always nice to see a familiar face in the hospital.

Not Such a Great Day

2011-07-22T16:49:00.000-07:00

Last night Ronny and I headed up to see our little boy. When we arrived we could tell something was going on as his nurse seemed a bit agitated. The nurse practitioner came in to inform us Aaron had another Grade 4 A&B just after I had left that afternoon. She ordered a CBC and the results came back mixed. Another CBC was ordered for 3 a.m. and the results were off again. The n.p. called us at 5:00 am this morning to tell us another septic work-up was ordered and showed his white cells were elevated. A urine analysis was also done that showed odd results. A renal x-ray was ordered, and then a KUB (gut x-ray) was ordered, and then a chest film was ordered as each showed troubling signs that precipitated the next x-ray. The doctors feel he has an infection, most likely a UTI or NEC. His KUB showed a possible blockage. Aaron's chest x-ray showed fluid on his right side and lungs that were having trouble. A blood gas was then done that showed he was starting acidosis. Antibiotics have been ordered, his feedings stopped, x-rays ordered every 6 hours, and he was moved from his high-flow to a c-pap. He is doing well on the c-pap and his oxygen levels are finally coming down with the higher pressure it gives. His x-ray this afternoon showed the blockage still had not moved. He will have two more x-rays tonight and if nothing changes the surgeons will be called in and he will be moved over to Primary Children's Hospital for surgery. Once he is moved he will most likely stay.

For the past few days I have been questioning both the doctor and the n.p. about Aaron's oxygen levels. I have told them that I was troubled they had not come down since the transfusion and change in medications. I was told repeatedly that things were o.k. and that it would take some time. I told them it had been over a week and still no results. Today after all his labs and x-rays Aaron's neonatologist came in to see me. He apologized for not taking my concerns more seriously and said he would do better. He said he thinks they caught the problem early, whatever that problem turns out to be. I told him I appreciated his apology and concern but that I expected him to fix it now. He laughed. I hope it gets better soon!

I'm Dressed!

2011-07-21T17:55:00.001-07:00

I walked in this morning to find Aaron's top up on his bed and a blanket taped over his head. I asked what was up and the nurse said he was officially starting the open crib process today. (Actually it was sped up significantly because he was getting way too hot!) The original plan was not to dress him as it is difficult to do with all his fractures but I guess that was changed in rounds. As he is still having breathing struggles and fracture struggles he will remain in his isolette with the top up for now. Putting his outfit on was nerve wracking as I didn't want to hurt him. Funny thing about preemie clothes, they are designed for babies at least 4 pounds, we still have a while before he'll fit into them. After he was dressed I held him for about an hour. Aaron was also changed from the water mattress to a memory foam/gel mattress thing. Niether Aaron nor I are too sure of it yet. It seems less comfortable than the water bed. We'll see.

Just as we had him situated in the new mattress the cardiologists came back for a visit. Our N.P. was summoned and we started to talk about Aaron's latest echo. The notes were not in his chart so they all left to the n.p.'s office to talk about what it showed. I was a bit perturbed as I wanted to be part of the discussion. I told the n.p. as much when she came back. The synopsis of the doctor's was this, "Well, we've seen worse." Wow, thanks for that! No changes and another echo in 10 days. I told the n.p. that I was concerned the echo showed no changes, that he still has not come down on his flow, and he has had two Grade 4 A&B's in a week. She said she agreed but we'll remain status quo for now. She said that he could go home taking the viagra, I reminded her that he could not go home on the high flow and that the viagra was supposed to help get him down off his flow and onto straight O2. She nodded. I told her I was not being impatient, just concerned that it wasn't working like they had hoped. I also told her I didn't expect to be going home yet, but I was expecting that we would be making more strides in getting closer to going home and that if felt as if Aaron was in a stall pattern, not getting better, not getting worse. She said she agreed and that my feelings were certainly valid and made a good point. For now we wait and see what happens I guess.

Its a Wash

2011-07-20T17:42:00.000-07:00

Ronny's Mom decided to stay a few days after his reunion to help us out here. This allows me to go to the hospital during the day as well as in the evenings. Aaron and I had a good visit today. We worked on eating off his pacifier again. Although he is still on 3 liters on his high flow and is unable to take a bottle, he is starting to take his pacifier again so we might as well work on eating so that when he comes off the higher flows he'll be ready for the bottle. He did relatively well for starting over. I also worked with OT today on a new positioning wrap they are going to try with him. You could tell Aaron was not so jazzed about the wrap but he tolerated it. I came home to help with dinner and get the kids out the door to karate. Just as we were sitting down to eat the phone rang and the call was coming from the U. Once again the dreaded call came telling us he had another Grade 4 A&B. They suctioned him and now he's stable. They are going to give him some albuterol to see if that helps. We'll be heading back up again shortly to see how he is doing. When the n.p. called to inform me I asked if he needed to be intubated and if he needed chest compressions, he did not. The n.p. commented that I knew the right questions to ask. Sadly I know the right questions because we've had far too many of these.

A Much Better Day!

2011-07-19T08:04:00.000-07:00

Saturday's Puppy Photo
Everyday at the start of rounds the nurse practitioner announces how many days old Aaron is. Every time I am there for rounds I marvel at the number. Day 64 I think she said the last time I was there. Has it really been that long??? Where have those days gone, I feel like I am missing so much at home, the hospital, and the world in general. Oh how I wish these days would slow down!

Aaron's "seatbelt". Aaron likes to know where his boundaries are. He also really likes to touch his face with his thumbs. When he is swaddled he will work his arms out just to touch his checks and lips. This weekend Ronny's family arrived for a family reunion in Heber. We had a great time and the kids loved spending time with their cousins. Charely is so much older and taller than all the other kids, she fits more with the adults than the little ones, she is getting so big, slow down my goodness!If you ever wondered what Ronny and his sister Liz looked like at kids, here you go. Our Sam and Liz's daughter look just like their respective parents at the same age these two are now. I have a hunch they have very similar personalities too!Aaron is growing in the midst of his fracture issue. He weighs 1230 grams, officially triple his birth weight! His feedings were moved up to 24 mls and his calcium and Vit D were increased again. He is now 32 centimeters long and looks like a premature baby should, not so sickly anymore. The blood transfusion seems to have perked him up quite a bit. He was awake a great deal of the day yesterday. OT came and showed me how to do Aaron's exercises. I then showed his primary nurse so that she can pass it along to each of his nurses each day. We do stretches on his shoulders, his hips, and when he allows us on his arms and legs. We also get to give him sponge baths in his isolette. His primary nurse is getting him ready to transfer into an open crib. She has set his crib to air flow and set the temperature to see how well he holds his temp. Usually this is when they will start to dress the babies but with Aaron's fractures he will only be swaddled. (Besides, preemie clothes still wouldn't fit him and trying to manipulate him to get clothes on would likely fracture more bones.)Yesterday after his 3:00 p.m. cares I was able to hold Aaron again. Usually I hold him on my chest with as much of our skin touching as possible. With Aaron's femur fracture this has become difficult. For now I swaddle him and lay him in my arms. Yesterday he was awake for almost 45 minutes while I held him. We talked and sang songs and just snuggled. He would stick his tongue out and root around so I know that instinct is still there after these last crazy couple of weeks. Its was sure nice to have an easy day for a change.

Code Blue

2011-07-16T13:20:00.000-07:00

Last night was a night I hope to never repeat! Just after I finished changing Aaron's diaper for his 9:00 p.m. cares he coded. Thankfully the nurse was standing right next to me and jumped right in. She hit the code button and she and I both yelled for help, good thing too as the alarm malfunctioned and didn't sound. After everyone on the floor came our nurse was able to bag and stabilize him. He was about 10 seconds away from being re-intubated when he finally started to breath again. I spoke with the nurse practitioner about what the cause could be and we both thought that he may have a new fracture. I also mentioned that he seemed really pale again. She ordered X-rays, CRT, and blood gas.

Aaron has a fracture now in his femur that the x-ray showed. It looks like he broke it sometime in the last week or so. I also think he has a broken finger but the x-ray didn't show it. (hard to when its so small.) I was able to be at the hospital this morning for rounds and talk with the doctor about what is going on. Another LP was ordered to be done at Primary Children's Hosptial on Monday but today's doctor is canceling it. We also discussed whether I should still be holding Aaron. He said absolutely and that the stimulation he gets while I hold him will help his bones heal faster but to let Aaron dictate how much he can handle. I agreed. He is still high on his O2 but we are hoping the transfusion will help bring that down.

Today is my official due date and Aaron's 2 month mark. He weighed in last night at 1120 grams but we think that is a little high due to some edema. Today is Sat. so a puppy photo will be taken, however we are in the middle of Ronny's family reunion so I won't be able to upload it for a few days. (I am typing this post at the hospital). We spoke with a friend of Ronny's who works here in the NICU this week. She mentioned that on average a baby weighing 500 grams at birth spends an average of 99 days in the NICU. We are at 62. I wonder how many you have to add for being 400 grams at birth but then have to subtract for higher gestational age. The doctor I spoke with today said he has seen only one other baby with as severe IUGR as Aaron. He said he just graduated from college last month. I think that is a great goal to shoot for!

Genetics

2011-07-14T08:31:00.000-07:00

Met with the Geneticist last night. He wanted info on both our families including our siblings, their kids, our parents, and where our ancestors came from. (We assured him we were not kissing cousins!) Interesting discussion. He doesn't think anything that is happening with Aaron's bones is a result of anything genetic, but he is very interested in my diagnosis. We'll see if anything comes of his research. Hopefully I'll be able to tell my daughter and my sisters that what caused the placental insufficiency in my kids is not genetic.

Its a Go!

2011-07-13T13:23:00.000-07:00

Aaron's eyes are not completely mature but are in zone 3 which is where they need to be to have his Viagra. He starts that this afternoon and will start to be weaned from the nitric shortly there after. If all goes well his nitric will be turned off sometime within the next day to a week. The doctor looked over his x-rays and is calling in a geneticist for a consult. He suspects Aaron has rickets. Depending on what the new doctor says, a series of tests will be done to see what can be done about that. Another day, another doctor, and another rounds of tests. For now we are extremely grateful that Aaron's eyes are far enough and he can be on this new treatment. We are hopeful it works and works quickly.

Game Plan

2011-07-12T09:12:00.000-07:00

Aaron's cardio team relayed their plans late yesterday afternoon. The plan is to start him on sildenafil right after his eye exam on Wednesday. (A prize will go to who can find out the more common name of the drug, you'll be surprised!) This drug will cause problems for his eyes if they are not fully developed so we are all praying for his eyes to be ready for the drug. If not, his retinas will have a high chance of detaching. He will gradually be stepped up to full dose of this drug with his nitric and then once he is on full doses he will gradually be weaned off the nitric. All three cardiologists are going to monitor him weekly and are going to weigh in on his continuous care. We were also told that once Aaron's pulmonary hypertension is resolved his PDA will need to be closed. We are passed the medicinal options so he will have surgery to close it. If we can get Aaron bigger they will be able to do this through the femoral artery if not, they will go through his side in-between 2 ribs, both will require intubation and a respirator. For now we know he has at least 2 surgeries in his future and hope that is all. We are also told that Aaron will have regular appointments with these cardiologist's once he leaves the hospital and that his heart problem may be a long term concern. He now has two machines to measure his pulse ox, one to measure the oxygenation of the blood before the PDA and one to measure it after. We want those numbers to be as close to the same as we can get them. We are told that this is not something they want to play around with, they are adamant that his pulmonary hypertension needs to be resolved immediately.

Aaron broke the kilo mark last night and weighed in at 1020 grams. I know some of this is edema and some is the added pulse ox monitors, but we'll take it and cheer. He was also moved up to 20 mls in his feedings. I am once again able to hold my little guy. While he is on the higher flow, bottle feeding is out of the question so instead of working on eating we just snuggle. He did really well and I held him for about 2 hours. His stats usually stabilize much better while I am holding him, so hopefully we don't have anymore major breaks in kangaroo care. Tomorrow is a big day, his eye exam is really important, we are crossing our fingers and praying his eyes are ready to go.