Wednesday, June 29, 2011


Today the nurses decided Aaron needed something more to help with his pain so they started him on morphine. I went up to see him tonight and he looked drugged. I had planned on holding him but he was wiped out after I changed his diaper so I let him be. He is taking more oxygen tonight which I think is a side effect of the morphine. He also had quite a bit of residual in his stomach that the nurse also said was from the morphine. That concerns me some as the stuff that is supposed to help with bone growth is coming in his feedings and if he's not processing it then its not getting into his system. He weighed 790 grams tonight. I don't think that was accurate after seeing how much residual he had so I'm guessing he is more like 770 grams.

Doctor appointments scheduled for the next two days, now if I could just not have any sick kids....

Fracture Update

Yesterday evening Ronny was able to go up to see Aaron right after work. While there the nurse practitioner gave him another update on Aaron's x-rays. Both Aaron's legs are fractured on both bones right near his ankles. He also has a fracture on one of the bones near his wrist on his right arm. For now they are giving him extra vitamins to help with the bone growth. We are still waiting to see the Orthopedics from Primary Children's. The nurses were not sure if they would want his arm and legs splinted. I asked how long it would take his bones to heal and they were not sure. They said they should start to see new bone growing in an x-ray scheduled for next week but the fractures probably wouldn't be completely healed for several weeks is their best guess. For now they are giving him Tylenol for his pain. He is still fussy but not so much that they would need to give him anything stronger yet. We asked what else they would give him and were told they would try morphine and if that didn't work they would sedate him. We are grateful the Tylenol is working well. He continues to gain weight and is now at 750 grams. He grew 2 centimeters last week and is 29 cm and his head is 25.5 cm. Through his pain he is also starting to breath better, he was taken down to 2 liters (the lowest on the NO2) and is back in the 20's on his oxygen.

Ronny and a good friend and neighbor gave Aaron a blessing last night. It was very sweet and Aaron behaved through it. I am so grateful that Ronny is a faithful priesthood holder who can give our children blessings when needed. I was prepared for things like heart trouble, breathing trouble, bowel obstructions, etc... I never considered he would break his bones let alone so many at once. I figured the bone breaking would come a little later in life when he decided to jump out of a tree or something else boys do. The hardest thing was knowing he was in pain and it wasn't something I could fix and not being able to go up and hold him was even more difficult.

Strep continues to plague our house. Joseph woke up late last night coughing and complaining his throat hurt. He is missing field day at school today and has a doctor's appointment later this morning. Ronny and I both decided to also go on antibiotics to ward off those nasty strep bugs. This will allow us to continue to visit Aaron. I won't hold him again until the drugs are in my system for a good 48 hours just in case.

Tuesday, June 28, 2011


Another one of those scary calls came this morning. Aaron's left leg and foot were once again swollen this morning and he seemed upset. This time they decided to take an x-ray and discovered 2 fractures in his left leg and 1 fracture in his right leg. His chest film showed his rib bones were see through and we are still waiting on the films from his upper extremities. He is having an echo done on his heart right now. I pray they do not break a rib today. The orthopedics from Primary Children's have been called and they will come see him this afternoon. They tell me this is "normal" on IUGR babies and its something that most likely could not have been prevented. Honestly, I'm tired of hearing these problems are "normal"! I don't think the news is any less concerning to me and certainly doesn't stop the tears. They say we can still hold him but we have to be extremely careful. I thought we already were being extremely careful. They have added calcium, Vitamin D, and another vitamin pack to his feedings to see if his bones will thicken. They are giving him tylenol for the pain and if that doesn't calm him down they will have to give him something stronger.

Any other day I would call someone in to watch Ben and head straight to the hospital, unfortunately Charley came home sick from school yesterday and has strep. I need to be in two places right now and I just can't be. Today is one of those days that seems like the patience I have just isn't enough!

Monday, June 27, 2011

Aaron video

Video of Aaron at 740 grams (1.6 lbs) and 6 weeks old.

Charley came home sick from school today, so Denise stayed home and I went up to the hospital to see Aaron alone tonight. I was able to hold him for an hour, after which the nurse told me it was time to put him back into his bed.

He was nice and warm when I was holding him, and he snuggled in and did a great job, low on his extra oxygen they add into his nasal canula and high on his O2 saturation levels. He wasn't so happy when I went to put him back in his bed. He woke right up and started looking around. Denise has said that she has seen him really awake and looking around, but I had never seen him this awake until now.

I sure do love my little baby boy. He is awesome.

Sunday, June 26, 2011

My Boys!


A Mother's Touch

Above: This weeks' puppy photo. Swelling has gone down in his hands and feet.

Below: Friday night photo. You can see the edema in his hands.

Yesterday was really busy so I just didn't have time to post. Ronny was at a scout activity with Joseph for most of the day and I took the other kids downtown to the Farmer's Market. We found lots of things to look at and purchase and we all had a lot of fun. I was happy to find a local honey vendor. A friend told us in Oregon that eating local honey to where you live will help with your allergies. It worked in Oregon while we were there so we are hoping it works again for us here. My stepfather Dexter took us to his friend's Belgian waffle shop across from Pioneer Park. They were amazing!!!! We will definitely go back for more.

Aaron is doing better. He had a few rough patches the last few nights with needing to go high on his oxygen. Mainly when he gets upset. His swelling in his limbs is pretty close to gone. He has been filling his diapers full again. Friday night he had a diaper weighing 25 mls which is almost double what he gets fed each time and the same night he pooped 4 times during his diaper changing. All his IV's have been pulled and his blood work Friday showed he was "reticking", starting to make his own red blood cells.

The exciting news is that Friday afternoon Aaron started to suck milk off his pacifier. He took 1 ml Friday afternoon. When we were there for his 9:00 cares we tried again. This time I was holding him while we worked on it. He took about 1/2 an ml before he was completely wiped out. My other kids would always fall asleep nursing, but I never realized how much energy they exert while nursing. Watching Aaron suck the milk off the pacifier and get wiped out was eye opening. He has lots of work to do before he can take an entire feeding just from a bottle let alone nursing him.

What I really notice now is how Aaron responds when we arrive and that he now expects me to hold him when I am there. I love it. He gets irritated when we wake him up to change his diaper or if he wakes up early and we don't get in there fast enough and feed him. He really lets you know when he wants something. What I love though is that he will calm right down when we are done messing with him if I just hold him. Whether it be just holding him in his isolette or if I can actually hold him next to me. He is now opening his eyes and "looking" for us when we he hears us. My heartstrings tug when I leave each night knowing I won't be there the next time he wakes up. I am grateful each time I get to hold him.

Friday, June 24, 2011

Scary Calls and Large Trucks

One of the nice things about not being able to be with Aaron 24/7 is that other than 2 hours during the day we can call and talk with his nurse at any time to see how he is doing. (Assuming nothing major is going on that they can't answer the phone!) What we don't like, although we appreciate, is when they call us. Its never good news, its usually to tell us something has come up and they are needing to change something in his treatments. We've had a few of these calls and I cringe every time I see University of Utah on the caller id.

Just after we finished dinner one of these calls came in. Aaron had a grade 4 A&B. A stands for apnea and B stands for bradycardia (sp?). Basically he stops breathing which eventually drops his heart rate or it stops all together. It goes from Grade 0-4. 0 is when they recover on their own, 1-3 requires stimulation to recover, and a Grade 4 is when they have to bag them and breathe for them. Aaron has had A&B's off and on since they took him off his caffeine. He's only had 0-2's. Mostly 0's. He has never had a Grade 4, so when the hospital calls to tell us he has just had one, our hearts stop and we find that we are holding our breath as well. Ronny and I jumped in our cars and headed up. We took two cars just in case I would need to stay the night.

The nurses are not sure what caused him to do this. He had been upset during the afternoon and wanted to be held. They eventually gave him Versed to calm him down, which I was not happy about. He would calm down when someone held him. No one called me, I would have come up to hold him. I would rather have someone hold him (preferably me!) instead of giving him anti-anxiety meds. I told the daytime nurse this and she said she would call me, but she didn't. They are not sure this caused the A&B, in fact I have a hunch it stems from his heart issues. He only wants to be on his stomach or have someone holding him. When we did his cares later last night he was having another fit. He wasn't calming down again and they told me I wasn't able to hold him because of what happened. When the nurse stepped away I put my hands in and picked him up. I just gently rocked him inside his isolette and he calmed right down. I held him like that while his sheets were changed and while we weighed him. He just watched me the entire time. He didn't cry or fuss at all. All he wanted was to be held. Once again he shows us he is older than he looks.

We made our way home later to see the construction process behind our home in full swing, it was 11:30 p.m. One street over ABC's Extreme Makeover Home Edition is building a house for a family from Taylorsville. We were notified last Saturday they would be coming. Our streets are shut down, security guards are at each street, crazy bright lights are all over the field across from us, and foot and car traffic have significantly increased. I really am happy for the family who is getting this house, its just really inconvenient when we are already sleep deprived. The beeping of the trucks and construction noise was constant all night long. I really feel bad for those who are in the condos right next to the house site, I talked to one of them yesterday and she already had a giant headache before the actual kick-off started. After I got home I realized I should have offered for her to sleep here for the next week, maybe I'll go find her again today. There truly is never a dull moment around here!

Thursday, June 23, 2011


Yesterday afternoon was a tad bit crazy. We headed down to the Y for an alumni barbecue with the CS department. There are 3 or 4 families that we like to catch up with each year and we always know they will be there. Its nice that the CS department will plan such an event for us to do that. :) Afterwards I headed up to see Aaron. Lots to report on....

First, he is really swollen. When I arrived I lifted his blanket and called the nurse right over. This was her first time with him so she may not have noticed but I pointed out his hands, feet, and legs and told her they were extremely swollen (edema). She called the nurse practitioner in and she agreed and said she would pass it on this morning. I was a little frustrated, I wanted them to take it more seriously and talk about what was causing it and how they would help him. After she left I took him out of his bed and held him. After about an hour or so they seemed to go down a little but still were enlarged when I left.

Aaron has a hernia. It doesn't seem to bother him but it will need to be fixed before he can leave the hospital. Apparently this is really common in preemie boys. Aaron was upped to 13 ml on his feeds yesterday. (I wonder if that is what is causing the swelling???) He weighed in at 720 grams but I know that is because of all his swelling and once he pees that off I'm sure his weight will come down. This time that high gain isn't so great. He was also removed from all the humidity in his bed and is keeping his temperature up just fine. He had another eye exam, still not vascularized but no sign of retina detachment (RPO). He blew another IV but hopefully after they finish the last of his antibiotics today they will be done with IV's for a while. I asked when he would be moved to an open crib. They usually don't do that until the baby is 4 pounds. I laughed, as did she. Because Aaron will most likely be coming home before he is 4 pounds they are going to have to rewrite protocol and decide when the move from the isolette to the crib is best. She didn't think it would be too far away.

After doing his cares I was able to hold him. He put his head down and nuzzled right in. He didn't move for over an hour. When we started his oxygen was at 41, when I put him back in his bed it had been turned down to 30 and he was continuing to high stat. He also kept his temperature so well that I had to take a blanket off because we were both a little too warm. He did not put up a fuss when I laid him back in his bed but he did open his eyes and give me this look of, "why did you put me back, I was doing so good". If I could have slept there holding him I would not have put him back.

Wednesday, June 22, 2011


I was able to go in during the day yesterday and hold Aaron. He did much better and settled right down when I picked him up. He had another set of labs done in the morning and his numbers that showed infection are way down and into normal range again so we know the antibiotics are working. His feeds were increased from 9 mls to 12 mls. The milk is getting 24 extra calories and they are now trying to fortify it with sodium chloride, potassium, calcium, and one more I can't remember. He was put back on nitrous oxide (NO2) to see if they can't get his heart to repair itself. It seemed to do a good job the last time he was on it and if its not enough to allow his heart to do the job the hope is that it does enough to allow him to get bigger before they decide on surgery or medication. I also spoke with the nurse practitioner and she said they are hoping to get Aaron started on bottle feedings in the next couple of weeks. He really likes his pacifier and that is a good indication he is getting ready to bottle feed.

Ronny went up last night and also was able to hold him. We love that he does so well that we can both hold him. He was there for cares and Aaron nailed him during the diaper changing. It was another 3 diaper process. Love those! He weighed in at 670-680 grams, they did it twice because Ronny was touching the bed when it was taken so we aren't quite sure what it was charted at. Just looking at him we can tell he is gaining. His ears which were once flat next to his head have definition and he is filling out the rolls of skin on his arms and legs. Now that they have increased his feeds so much we can tell he is working on growing. He isn't waking up to eat anymore, he's waking up when his diaper needs to be changed. Then he really hollers. We thought he was feisty before, he really lets you know when he is uncomfortable now! His screams are getting louder so we know his lungs are getting bigger. The nurses comment all the time that in his little head he knows he is 36 weeks gestation and is acting like a 36 week baby, he just doesn't know how small his body is. The hat that he wore after he was born no longer fits so he is now wearing a bigger one when we hold him.

Tuesday, June 21, 2011

Echo News

Last night we received the results of Aaron's echo. His PDA is wide open and once again has bilateral direction. He also has flattening of his septum. The cardiologist has decided to let it be and watch it really closely. They did readjust the range on which they want his oxygen saturation stats which requires him to have a little more O2 then he is used to. They are hoping to bulk him up and let his heart take care of closing the PDA off on its own. The flattening of the septum makes that a little tricky. Normally they would increase his feeds even more but that may cause the septum to flatten more and cause breathing problems. So they did up him to 9 mls a feed yesterday and stopped all his extra fluids. The cardiologists ideally want Aaron's heart to fix itself, if they have to go in surgically and fix things or medicinally try to fix it they would like him bigger. They have done this surgery on babies Aaron's size but they would rather have him bigger if at all possible.

For now he is doing exactly what they want him to do, gaining weight. He weighed in at 650 grams. Since he was born he has gained 250 grams and considering he lost 40 grams at one point he has gained almost 300 in the last 4 weeks. To me that is absolutely amazing considering it took me 31 weeks and 2 days to get him to 400 grams!

I tried to hold him last night after he was fed but he wasn't having it. He kept squirming around and his O2 stats dropped. As we were trying to get him better situated he lost too much heat so after only about 15 minutes he went back into his bed. We swaddled him and he went right to sleep. It was almost as if he was saying, "Mom I just want to sleep right now, I'll play later."

Monday, June 20, 2011

We arrived late last night so we missed Aaron's cares but he is doing great. The new feeding procedure seems to be working as he weighed in at 620 grams last night. 4 grams shy of 1 lb 6 oz. He is taking 7 mls a feeding now and will most likely start to get 8 today. He is waking up 15 minutes before each "cares" and whines to be fed and has little to no residual left in his stomach. The nurses can tell he wants more food and have to sooth him with his pacifier. If he weren't still getting antibiotics they could take his IV's out. He still measured 27 centimeters and his belly is up to 17 cm. I think most of his weight is in his belly, hands, and feet. I imagine he will have grown next week as my kids usually bulk up and then shoot out. Being Father's Day yesterday I really wanted Ronny to hold him. He was able to hold him for about an hour and I could tell how much Ronny enjoyed his time with him. Ronny is convinced we will now need to get a new rocking chair with lots of cushion like the one at the hospital.

Aaron has decided being swaddled is how he likes his days now. During this week he also decided he likes his pacifier. When he is upset we give it to him and he latches right on. Its also the bigger of the two pacifiers so taking this one moves him one giant step closer to being able to take a bottle. He is 36 weeks gestation as of Saturday and its hard to think that in just one more week he would be considered full term. Today he gets another echo to check on how his heart and lungs look. No labs are ordered for today so unless he blows another IV he won't get poked today. He got a new one last night while we were there so hopefully they last until tomorrow.

We got home really late and this morning we both are very tired. I was so tired this morning I forgot to send the boys off to school. Oops!

Sunday, June 19, 2011

Father's Day

Last night I was able to hold Aaron again. His temperature was a little low when we started but by the time I put him back in his bed he was plenty warm. We were both very content and sleepy during our time. Ronny was too as he had fallen asleep on the chair next to us. He has started to gain weight again. We were happy to see that while he was sick he was able to maintain his weight. Being fed through the process sure helped! Last night he weighed in at 580 grams. Tonight he gets measured as well. Ronny is talking with his nurse right now and he seems to have had a good day. He was brought down on his flow and is doing well with that. A good sign he is starting to feel better. We'll go up tonight and hopefully Ronny will get to hold him. Could there be a better Father's Day gift????

This morning the kids and I got up early to make Ronny blueberry pancakes. Ben has been planning the blueberry pancakes all week and was soooo excited to bring them in this morning. The boys had made cards at school and Mom helped fill in gifts for the other kids. The boys were very excited to give their Dad oars for our raft in desperate hopes to get a trip or two down the river this year. We'll have to wait for later in the season, the rivers are running way too high and fast right now. Something to look forward to though this summer.

Saturday, June 18, 2011

Juggling Act

I sent Ronny up to rounds with Aaron this morning while I took Ben in to the doctor for some allergy relief. Last night we all walked to the park and let the kids play for about an hour before we headed up to the hospital. We are constantly trying to juggle life at home, visits to the NICU, and time together. There never seems to be enough time to get anything 100% complete, especially when it comes to laundry, vacuuming, and the dishes! I see paper plates becoming a staple this summer time, sorry to my environmental friends, something just has to give. For now we are doing our best to keep up and the rest will just have to wait!

In rounds today they decided that whatever is causing an elevation in white blood cells the antibiotics he is getting are probably killing it off. None of the cultures have grown anything, there are a few theories on why that is. They will continue his antibiotics for another 5 days and see if they have killed everything. He is breathing much better today and hopefully tonight or tomorrow he will start moving back down on his flow. His team has decided that he needs to grow more and faster. So the goal for this week is to increase his feeds by 1 ml everyday and increase his extra calories. By Friday they want him up to 10 mls per feed. (2 tsp) To do this they will need to get rid of his IV's, so they have decided not to put a pic-line in and do their best with the IV's until they pull them completely. As they increase his feeds they decrease the amount of fluid he is getting through the IV's so at some point they won't need to give him anything in the IV and they will take them out.

Aaron also had an eye exam this week. He does not have any problems with his retinas so far. His eyes are not yet vascularized so they will still need to be careful with his saturation levels. He will get eye exams every week until they are completely vascularized. At some point he will also get a hearing test but we do not yet know when that is. We can tell he can hear us though as he turns his head to our voices and wakes up when we first arrive and talk to him. I also asked about his immunizations. He will get them but not until he is 60 days old which will be on his actual due date. Its also Saturday today which means he gets another puppy photo. Ronny forgot the camera this morning so I will take one when I go up later today.

On another note (and I'm sure my mother will be horrified when I share this, sorry Mom) my period started again yesterday. I know its my period because cramps have arrived with it. Really!?! There is something seriously wrong about not even getting the 9 months off when you are pregnant, my due date wasn't even until the middle of July! So not fair!!!!!!!

Friday, June 17, 2011


Yesterday evening I called to see what the spinal tap results indicated. I was once again transferred to the nurse practitioner. She said the white cells were shifted and elevated but that there were red cells present so determining how elevated was difficult. I called our sweet neighbor who always comes when we need her to come watch the big kids so both Ronny and I could go up last night. My mom was going to come but was getting over being sick.

Aaron's primary nurse was back on last night and she gave us the run down of what all the results meant. We can always count on her to spell things out for us! Shifted white cells mean that Aaron no longer has enough mature white cells to fight the infection so his body is sending immature cells to fight. This is troubling. They are hoping that whatever the infection is doesn't turn into meningitis. (me too!) The amount of blood and fluid they need to draw to run the tests is significant when you only weigh 570 grams so Aaron will most likely need another transfusion today and possibly another spinal tap. The fluid they got yesterday may not be enough to grow the cultures they need to determine what kind of infection he has. The transfusion may also be problematic with giving him his bone marrow shot. Whenever they tell me they have to run all these labs I know a transfusion is coming. You can see how pale he gets in the photo. He is blowing IV's quickly and the antibiotics he is receiving will cause that to become more problematic so they are talking about putting a pic-line back in. I would prefer the pic-line at this point just so they don't have to continue to find veins that will work. We will know what they decide to do after rounds today.

Aaron is maintaining his weight and continuing to digest his feedings so that is a good sign. Last night he was still feisty with the nurses when they needed to check him so that is also good. Until we know what is going on and that he is recovering I won't be able to hold him, which is the exact opposite of what any other mother would do when their child is sick. We pray the drugs he's receiving kick in quickly and wipe out the "bugs" as Ben refers to it.

Today Ben gets to have a trip to the doctor. Looks like his allergies are causing asthma issues. Something that has happened with all our kids thus far, we know the drill!

Thursday, June 16, 2011

1 Month!!!

Aaron is officially one month old today! Happy Dance! Unfortunately its been another hard day with setbacks. Last night I was holding him and I could hear him start to breath really fast. I couldn't see his monitor where I was sitting so I asked the nurse what was going on. His respiration rate which is usually in the 30's or 40's was climbing in the 80 to 100 range. I put him back in his bed to see if that would help but it didn't. The nurse turned his O2 up to see if that helped. It did a little but it was still hanging out in the 60's. I didn't want to leave until I knew it was back under control, apparently it went on all night and they continued to turn his O2 up.

This morning they decided to run labs and an x-ray to see what they could find. I called to see what the results were and they immediately transferred me to the NP. Never a good sign! The labs were once again elevated so they started him on another round of antibiotics and ordered another spinal tap and cultures. Ugghhh! The initial results will come back sometime tonight and the cultures in 3-4 days. His belly is not large so they are not as concerned about an obstruction this time but they are more concerned about an infection. Grrrrr, Bad Word!!!

I hate when they tell me his labs were elevated, how elevated??? A little, a lot? Today they are elevated enough to run the tests and start the antibiotics but not enough to hold off his feedings, whatever that means....

Wednesday, June 15, 2011

Request for Help (maybe win an IPad2)

... sorry this isn't a post about Aaron. Yes, you really can win an IPad2.

During the nights I'm in the NICU, but I still have my day job designing Artificial Intelligence and statistical models of purchasing behavior. Our company,, has just launched a new section of our site that allows students to review the schools they have attended.

We're trying to seed the reviews as quickly as possible, so we're holding an internal competition. Whichever employee gets the most people to submit reviews wins the competition. If I win, one of your reviews will be selected as the "best review" and that reviewer will win a new IPad2.

Follow this link to my page for the competition:

The company is pretty small, so you actually have a pretty good chance of winning. Feel free to pass the link around to whoever you want, but be sure to have them leave a comment at the bottom of the page so your review can get counted towards my total.

Tuesday, June 14, 2011


The doctor confirmed that I can hold Aaron everyday assuming he tolerates it well! Sooooo excited to hold my boy more often!

Quick Update

Last night Aaron weighed 530 grams. I called his nurse this morning to see how his night went. She said he was pitching a fit just after 8:00 this morning and she couldn't calm him down. She finally checked his diaper and found a large stool. She changed him and he went right back to sleep. I can tell she's a new nurse because anyone we've had before would've checked the diaper first. They should put a note on his bed or something about his little personality. If he's upset he's either got a full diaper or he's hungry! I asked the nurses to ask for more kangaroo care time during rounds today. He does so well when I hold him that I figured it doesn't hurt to ask. They can say no and I'll still hold him twice a week or maybe they'll let me hold him once a day. That would be awesome, and I'm keeping my fingers crossed.

The big kids are back in school minus one. Sam had another turn with a stomach virus yesterday. Its summer, they aren't supposed to be sick! Hopefully this is the last of it......please Lord let this be the last of it!

Monday, June 13, 2011

Hello Little Brother

Yesterday we decided it would be a good day to take the kids up to see Aaron. Joseph has been begging us to go so we up we went. On the way there Ben looked at the window at a point on the 215 where you can see all of Salt Lake Valley and said, "Dad, I think I see the whole world from here." Some days I think the same thing. Taking all 4 kiddos in at the same time was not an option, there just isn't enough room for all of us so we decided to tag team the kids.
I took Joseph and Sam in first. As soon as we went in the double doors to Aaron's unit they were silent. I had them say hello and told them they needed to speak up. (I don't know that I have ever told these two boys to speak up!) Aaron woke up and if he could roll over I'm sure he would have. Joseph asked if he could hold him and the nurse told him he could once he gets bigger. I've seen a few kids across the hall holding their siblings. The boys had lots of questions about the different machines and Sam tried out the rocking chair. While we were in there Aaron's new neonatologist came in to talk and give me the latest updates. I'll get to that in a minute.
Ronny then took in Charley and Ben. Ben has been telling us how excited he is to finally be a big brother and how he is going to teach Aaron his letters, colors, numbers, and how to read. I have no doubt that will happen. Ben is committed to the cause! When they came out they showed off their prizes they received at the front desk. Of course Joseph and Sam had to have one too so back they went. It was a really sweet trip for our family and I'm glad the big kids finally got to see their brother.

The big news of the day.....Aaron is finally over 500 grams!!!! It took 4 weeks but he did it! He seems to be getting bigger faster now. He was also measured and came in at 27 centimeters, so for this week he grew 1 1/2 cms. His doctor said today was a big day for him. It surly was! He is back on just his high flow machine and only at 1 1/2 liters. When he gets weaned down to 1 liter he will be moved to the "low flow" or oxygen from the wall and the machine will go away. They are trying something different with his feedings as they move him back to the full 8 mls. One day they will increase the amount of fluid and the next day they will increase the fortification of calories to the milk to see if that will help his system with the gas. By Friday he should be back to full feedings and full calories and hopefully off all his IV's. On Friday they will also start him on a new medication that should help his bones create more red blood cells so that he won't need transfusions when they run tests anymore. Today his bed will be changed out for a new one. Hopefully his humidity will be able to be stopped soon as well. He is also taking his pacifier much better, especially when they put the sugar water on it! Keep growing little one, you have a lot to catch up on!

Saturday, June 11, 2011

Puppy Photo

Here is this week's puppy photo. (For those of you just joining us, I will take a photo of Aaron with his puppy each Saturday so our kids at home can see his growth each week). I took my sister who's visiting from out of town in today to see Wonder Boy. I lifted his blanket and she gasped. That's what most people do, even the nurses, when they see him for the first time. We talked for awhile and I answered her questions as best I could. She got a little teary and apologized. I laughed and told her tears were always welcome. I cry all the time. I cry when I am crazy worried about him and my other kids, but mostly I cry when the enormity of the miracles it took to have Aaron here hit home. Those miracles seem to come often, so I cry a lot! Tears are no stranger here!

I was explaining the different machines and noticed that Aaron's nitrous oxide was set at 0. His nurse had stepped out so I didn't have anyone to ask what was going on. We once again thought he would be on this a few more days but are pleasantly surprised he was doing well enough to be weaned off. They well be upping his feeds today to 5 mls every 6 hours and if he does well they will double that tomorrow and start to fortify it again with extra calories.

Someone also donated quilts to the babies in the NICU so we were the recipients of two very beautiful quilts today. I wish I knew who to thank, they are adorable. My Dad who is now officially visiting from out of town is up with Ronny seeing Aaron for the first time. (For those of you who know my Dad, he recently found a new job in Wyoming. Another miracle! He's been looking for almost 2 years now.) Today was a good day!

P.S. I posted twice today, which means I probably won't post tomorrow so don't fret. If anything big happens I'll post, otherwise know things are good and I'll most likely post again on Monday.

Sweet Moments

Aaron was finally fed yesterday at 3:00 p.m. He is back to only 2 mls every 6 hours. He doesn't seem to be tolerating them as well this time. He was given a suppository late last night to see if there was something still blocking his bowels and he delivered up a good stool. Hopefully that does the trick and he digests his feedings once again. Last night we had a sweet surprise waiting for us. Aaron finally had his footprints done! The nurses seemed to have a lot of fun doing them as several copies in two different colors were waiting for us. They also took a set home to show their families and have for themselves. We didn't mind, they are adorable. (Unfortunately I left them there last night so I will take a picture today and post them.)

I did get to hold him last night but only for about an hour. He was getting a bit grumpy towards the end of our time so we put him back in his bed. His temp was on the low side before I held him but within 20 minutes it was up a full degree! The nurse stopped taking his temp at that point and trusted he was just fine. He was weaned down to 1 on the NO2 machine and if he tolerates that well he'll be weaned off soon.

I just had Ronny call up and see how his 9:00 am cares went. That stool seemed to help, his belly is down another full centimeter and there was no residual in his stomach so hopefully he goes up on his feeds today.

Today is Saturday so he and his puppy will get photographed today. I know its hard to tell from pictures, but he really is getting bigger. We no longer can count each individual rib. He is now officially over 1 pound. Two days ago he weighed 470 grams, last night he was 490. We know his weight is subjective depending on if they weighed him before he was fed or after, and how many tubes and lines they have in him, as well as how much of those tubes we support with our hands. We like to see his weight stay the same or go up each day. That tells us that something is being added to those tiny bones.

Friday, June 10, 2011

Better Day!

(The nurses mentioned one day they were always short on gel pack covers. I thought making some more would be a great project for the kids to work on while they were off track. We completed 31 and took them up this week!)

I've been getting emails and calls telling me I need to post, sorry! So we've been waiting to hear results of all the tests and cultures and x-rays they have been running. We've been calling and going up to see Aaron each day. The word has been "more tests are needed", "we're still trying to figure things out". They did put in a larger tube to vent his stomach and that seems to have done the trick. In the last 3 days his stomach went from 18.5 cm to 15.5 cm. It looks like he had a lot of gas that just wasn't making its way through and that was causing things to get backed up. They are going to let the cultures go another day but so far nothing has grown. If his x-ray and labs look good this morning he will start his feedings again today and hopefully I'll get to hold him today as well.

Wednesday night I took Charley up to see him for the first time. Unfortunately I forgot my camera. We walked into the unit and a nurse we've had came right over and said, "You must be Charley!" We scrubbed in and Charley got to see Aaron for the first time. She looked at me and said, "Mom he is soooo small! I didn't realize how small he was. But Mom, he is soooo cute!" After about 10 minutes Charley was getting sick to her stomach and needed to go to the waiting room. I told her not to worry, I get that way too sometimes in hospitals.

Last night I went up and found that Aaron had had another blood transfusion and all his labs and x-rays were looking better. The day nurse failed to mention that when I called and asked how he was doing. He looked really good last night and was a mighty tired boy. He woke up just long enough for me to change his diaper and take his temp. I then read to him for about 30 min. and when I looked in he was sound asleep.

(I just called up and learned that Aaron was just approved to start feedings immediately and that I can hold him once again. Hooray!)

Wednesday, June 08, 2011

Terrible, Horrible, No Good, Very Bad Night!

Yep that's right it was a terrible night, for all of us!
Ronny and I went to see Aaron last night. We had his "cares" changed to 9 because it 8 works better for the family we share a room with. Ironically they didn't show up until 9 last night. Aaron was wide awake and ready to be fed. We were waiting for his latest set of labs and an x-ray to see if they would allow him to eat. He looked at as us as if to say, "Mom and Dad, I had a bad day and I'm hungry, can I eat now?" The x-ray came back showing the gas in his belly was a little odd so they wanted to wait for the blood work to come back. By 10 Aaron was mad and upset. Unfortunately the hand they put the IV on is the hand he sucks on when he's upset so he couldn't get to it. At 10:30 the phone rang and the lab informed us the blood test we were waiting for had to be redone because the blood had clotted. We were all frustrated, mostly Aaron. His nurse gave him his pacifier with some sugar water on it and he latched on with a vengeance. It's the first time we've seen him take it so well. That lasted for about 15 minutes and he was upset again. They did give him 1/2 a feeding at midnight before the results were back.
At midnight we called back up to the hospital to see if the labs were back yet. Its never good when they transfer you straight to the doctor instead of the nurse. The blood work didn't get better with the transfusion like they hoped. They are still not sure if he has an infection or if he is just starting with a bowel obstruction. Either way they said whatever it is we are catching it early. Another full panel of tests were ordered last night including a spinal tap and cultures. I can't imagine them doing a spinal tap on him, he is soooo small. I called in early this morning to see what results have come back. The few that are back have come back negative for infection so far. Some won't come back until later today and more will come back in the next few days. Even more labs were run this morning at 9. Whatever is going on Aaron is still hungry, he's still passing stool and urine and believe it or not he's still gaining weight. 470 grams last night.

20 minutes after we arrived home Joseph came in telling us he wasn't feeling good. 10 minutes later he was throwing up. He threw up every hour the entire night. He seems to be feeling better this morning. Hopefully whatever he has stays with him and doesn't get passed to anyone else. He is now quarenteened in my room with the T.V, and a bathroom. I will sterilize the kids bathroom today and when he goes back to his room tonight I will do mine as well. I need to put up a sign, NO GERMS ALLOWED!!!!

Tuesday, June 07, 2011

2 Steps Forward 1 Step Back

I was just about to sit and write a glowing report about the amazing things Aaron is doing when the nurse practitioner called to let me know of a new concern and steps they are now taking. So mixed news today.Good News: Last night both Ronny and I went up and were able to hold Aaron. They bring me a gown to wear while I hold him and close all the curtains, Ronny on the other hand says, "I'm a guy it doesn't matter to me!" while whipping his shirt off. The nurse and I both laughed. It turns out that gown helps keep some of the heat in.
The nurse informed us that Aaron had his echo yesterday afternoon, which was surprising to us as we thought it was scheduled for today. The echo showed that his pulmonary hypertension is gone and his PDA went from large to small and the blood is now flowing in only one direction. (Happy Dance!) They are now in the process of weaning him off his nitrous oxide. He was moved up to full feedings with 24 extra calories added in and tolerating them really well. Aaron's pic-line was removed and he went 24 hours without any IV's in. His caffeine and TPN had been stopped and other than 1 shot of antibiotics before pulling the line he was done with all the infusions. The nurse did mention that his urine output had slowed down so that was something she was going to watch. They had also done an x-ray on his belly because it was a little discolored and bloated. Nothing came up so the bloating is just gas. I joked that my 7 year old would be more than happy to teach his brother how to pass gas. (I won't tell him that though!)

Not so great news: Aaron's heart rate seemed to be a little high the last couple nights. It always seems to come down when we were there talking to him. He was also looking a little pale which I mentioned to the nurses and they would shrug their shoulders and say the labs look fine (the labs may look fine but he looks pale to me!). His urine output which has been amazing hit the brakes last night. This morning the nurse practitioner ran a new set of labs and his white count is a little elevated and his hematicrit was low (hmm... did I mention he looked pale?). With the decrease in urine and hike in white cells they start to worry about an infection. Infection is the new swear word so to speak, its a very bad word, one that we don't ever want to hear!

Another x-ray was taken but still everything looks good. For now they are going to start another blood transfusion to see if the numbers stabilize. They are going to do it over 8 hours this time and see what he looks like and see if his urine picks back up this afternoon. If not, they will run another lab panel, otherwise they will wait until tomorrow to run one. I asked if they planned on giving him antibiotics but they are hoping the transfusion will take care of things. They are also stopping his feeds during this and putting in a second IV to start the TPN again until they resume the feedings. So 2 peripheral lines are being put back in. If all goes well they will be gone tomorrow.

Sam had his follow-up with his surgeon yesterday. I think we were in his office a total of 10 minutes, with the doctor only about 3 (remember his office is up at Primary Children's, 40 minutes away!). He looked at Sam, asked a few questions, wrote a few notes and declared Sam fit for full activity. He didn't seem too concerned about his fever yesterday. He then told us we needed to come back in 3 weeks for another follow up. Why???? If you are saying he's good to go then why do we need to come back? Couldn't his regular pediatrician in town do the same thing? Just asking.

Monday, June 06, 2011

Throwing a Fit!

This is Aaron's isolette with his puppy on top. They change his blankets every night and each night is a different theme. Tonight it was dogs. This quilt square on the the bottom was made by my amazing visiting teacher. I asked her to make this when we went to the hospital to deliver the first time, when we were told he was terminal. We wanted to have something to wrap him in. Its now always near him, she has since made me another one so I can frame it. Micky (my v.t.) is hands down the best v.t. there is. We have called her in the middle of the night to come sleep with our kids on more than one occasion. She has brought in meals and goodies, she has coordinated meals after Aaron's delivery. She calls and checks in regularly and asks for a "to do" list. She loves our kids and our kids adore her! She is has become another grandma to our family and we hug her every time we see her!
Sunday's are the days that Aaron's labs are now run. They are now only drawing blood and fluid one day a week to run all his tests. All the numbers came back good except his sodium level. It was a little low but that is easily fixed with a supplement once a day in his feedings. We were assured this is a normal thing. It seems like we hear that a lot. I would rather hear its normal than the alternative though!
Last night the dressing on Aaron's pic line needed to be changed. This was quite the ordeal as everything needed to remain sterile and the process seemed to drag on for a long time. Aaron was a champ through the hard and painful part but by the end he was having a fit. I can't blame him, it looked so uncomfortable. Three of us were holding him through the procedure. Twice I had to sit down because I was so light headed. By the end I could tell Ronny was too. Afterwards the nurse wrapped Aaron in his blanket and handed him to Ronny and told him to cuddle him until he calmed down. I was so relieved she allowed us to hold him and soothe him. It still took us another 1/2 hour of singing and talking to him to get him to go back to sleep. We pushed off weighing and measuring him during that "cares" session just to calm him down. We called later and found out Aaron is now at 440 grams, his head is now 23 cm (I think) and his length is still 25.5 cm.

I don't know if Ronny holding Aaron was "allowed" but we love this nurse as she is one to do what is needed as opposed to what the rules are sometimes. Talk about a "mother bear" protector, she is just as feisty as Aaron and will get on other nurses who talk too loud near our room and will question guidelines that she feels shouldn't apply to Aaron's case. She's the one who started the ball rolling on allowing me to hold Aaron and is the one who is actively pushing for his feedings. She is our first primary nurse. We asked her a few days ago and found out she was primary on a set of twins. We came in the next day to find a letter from her saying she had a sweet experience with Aaron that night and he melted her heart and she took herself off as primary on the twins to be Aaron's nurse. She is wonderful and we love her!

Sam and I came home from church early yesterday. I needed to pump and he wasn't feeling well. We took his temperature and found it was over 101. We are not sure if this is related to his surgery or not. He was still running warm this morning. He has a follow-up appointment with his surgeon today so hopefully we will figure out what is going on. I'm supposed to have my skin-to-skin time with Aaron today so this poses a problem. Until we can figure out what is going on with Sam I won't be able to hold Aaron. Hopefully its something easily resolved and won't land Sam back in the hospital either. We don't need a repeat on that performance!

Saturday, June 04, 2011

I'm Awake and Hungry!

Last night Ronny and I went to check on Aaron. We walked in and said hello to him and here is how he greeted us. He opened his eyes and waved his hands. He was awake for almost an hour while we talked to him. This is the most awake and alert we have ever seen him. After he was fed he eventually settled down and went to sleep while Ronny was talking with him. Ronny was telling him all about his sister and brothers waiting to meet him at home.
This is Aaron's new puppy. We told the kids that we would take a picture with Aaron and this puppy every week so that they could get an idea of how much he is growing. We hope you will see this puppy several times! They weighed him while we were there last night and Aaron weighed in at 430 grams. They are now adding calories to his milk and will start to add protein as well sometime in the next week. Aaron will get his own "muscle milk" soon!

This is Aaron's blood pressure cuff. He gets his blood pressure taken each day. I am amazed they make them this small. I had my 2 week postpartum appointment this week. My blood pressure came in at 110/70. Happy day there, my doctor asked me if I was going to pass out it was so low (compared to the last several months). I'm stating to feel like myself again and hope to be back to full force soon.

I talked to the occupational therapist today about feeding Aaron. Aaron is going to start the feeding readiness tests. He is officially 34 weeks gestation today and at that point they allow mother's to start nursing their babies. Obviously Aaron is too small so we are on the hunt for the very smallest bottle nipples we can find. He may not even be able to take the bottle for months but we can start letting him suck milk off his fingers and the tip of his pacifier.

Friday, June 03, 2011


Yesterday morning bright and early Charley and I headed over to the orthodontist. Charley had new "bling" put on, her teeth that is. She has been excited for her braces for a few months now, we'll see if she's still excited about them today when they start to rub her mouth raw.
Aaron's big milestone last night was his graduation into the Low Birthweight Room from the receiving room. Here Aaron and one other baby share a small room and a nurse. It is much quieter here and we don't get kicked out when another baby gets brought in. I went up to see Aaron yesterday and the nurse asked if I wanted to hold him again. I of course said yes and she asked the nurse practitioner if that was ok. Normally they do not allow you to hold your baby (skin to skin they call it) until the baby is at least 750 grams. That will almost be doubling his weight and could take months to reach. Our np is also going to ask in rounds today if we could have two scheduled skin to skin times each week. Aaron does great, he keeps his temperature up and settles right down when I hold him and both the nurse and the np said he sleeps much better afterwards so if the doctor ok's it we are good to go. We've been told that Aaron qualifies for social security as he is deemed disabled. Apparently when you are below 1200 grams the government considers that a disability. If 1200 grams is the baseline he certainly qualifies!

The nurse also asked if I was planning on nursing Aaron. I said yes and then she said when they get to be 34 weeks gestation they start to allow the mothers to nurse their babies. I laughed out loud and told her if he was still too small to take the tiny pacifier they have in his bed there was no way he would be able to nurse. Aaron has quite some growing to do until that day comes, its certainly something to look forward to. His belly is a little swollen this morning and a little black and blue so that is something they are going to watch. He continues to have good bowel sounds and continues to pee like a champ so they will continue to increase the amount of his feeds. They took him off his fat emulsion and looks like they will take him off his TPN today or tomorrow. When that happens he will have his pic line removed. They are adding calories to his milk to try to bump up his weight. He went back down to 390 yesterday but they said that is normal until he is maxed out on his feeds at 7.5 mls. That will happen this weekend if all goes well. I always feel better when his weight increases though.

Wednesday, June 01, 2011

Soakn' up the Sun

Ronny and I headed up last night after the big kids went to sleep to check on our little one. Ronny wanted to get this picture to show off his arm muscles and the one above to show his bubble blowing ability and that his hair is growing. He is doing great! He gained 20 grams and is back up to 410 grams, above birth weight once again. Last week he got down to 362 so he is gaining weight finally. His feeds will be upped to 5 ml every 3 hours today. When we arrived we said hello to him and he woke up and opened one of his eyes, the other one had some tape over it so he couldn't get it opened but you could see him trying. His movements are getting much more deliberate. Before when he would move it would look like everything was in slow motion, not so anymore. Right after I changed his diaper the nurse came over to measure his belly. I had come over on the other side of the bed with Ronny and right as the nurse was getting ready to measure him he started the water works. He sprayed the entire side of the isolette, all over the blankets, and still even managed to get 7 grams inside the diaper! It was the funniest thing, you would think he planned that just right! His echo went well and they did not have to give him any anxiety meds. Aaron's doctor walked the scan over to the cardiologist personally to get him to read the results (he doesn't like to wait). In rounds today they reported that both his hyper tension and his PDA look much better, as best as you could hope for they said. They both decided to leave him on the nitrous oxide at the lowest dose for another week and see if they will resolve on their own. So, no surgery for now! Yahoo!
Yesterday was my first day with the kids by myself again. Sam is still not 100% and is not ready to go outside yet other than on our porch. I sent the rest of them outside just to have a little peace inside. I caught Charley soakin' up the rays. That's my girl! My incision is starting to hurt again. I don't know if its always hurt this bad and I didn't notice it before because I was just on the go so much and now I'm finally feeling it. I have my 2 week follow up tomorrow and will have it checked out. I can't believe its already June. I feel like I completely lost May. Ronny reminds me that I spent half of it in the hospital and the other half recovering from the hospital stays. Its true, I keep looking at the boys and wondering when they grew so much.