Sunday, July 31, 2011

Another Day

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.

Saturday, July 30, 2011

We Made It Through The Night

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.

Friday, July 29, 2011

A Long Day

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.

Thursday, July 28, 2011

Reading Time

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.

Wednesday, July 27, 2011

Slight Improvement

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.

Tuesday, July 26, 2011

Once Again a Call For Prayer

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

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.

Monday, July 25, 2011

Cakes, Puppies, and Sleep Overs

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.

Saturday, July 23, 2011

A Positive Turn

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.

Friday, July 22, 2011

Not Such a Great Day

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!

Thursday, July 21, 2011

I'm Dressed!

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.

Wednesday, July 20, 2011

Its a Wash

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.

Tuesday, July 19, 2011

A Much Better Day!

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.

Saturday, July 16, 2011

Code Blue

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!

Thursday, July 14, 2011


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.

Wednesday, July 13, 2011

Its a Go!

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.

Tuesday, July 12, 2011

Game Plan

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.

Monday, July 11, 2011

Consult Update

Well the priority status was taken seriously with the Cardiologists and Primary Children's as not just one of them came to look at Aaron, all 3 came to see him. Aaron's N.P. today said he behaved well during their evaluation. She also said that all three stood around his bedside and hemmed and hahhed trying to decide what to do with him. She said they all agreed they want him off the Nitric Oxide and that he should be on medication. They also agreed that he should have weekly echo's until whatever is going on is resolved. Aside from that they weren't sure what to do. The N.P. reminded them that although Aaron is small he is officially a full-term baby at this point. The problem with what to do is Aaron's eyes. The medications that is used to treat heart and lung problems cause problems with little eyes that are not yet fully developed. From what I understand his eyes are close as of last week and he will have another appointment this week. We are crossing our fingers that they are complete now as that will make treating him a lot easier. For now the Cardio team wants to conference and come up with a good plan and then get back to us. So, confer away, we'll do our best to wait patiently.


Yesterday I spent most of the day at the hospital with Aaron. He seems to be coming out of his drug induced stupor and is showing signs of his original personality. I was able to be there for rounds and talked with the Attending and the rest of Aaron's team. I like this Attending, he makes me feel included in rounds and listens to what I have to say and takes it into the account when he decides what changes should be made. So far all of the cultures and blood tests have come back negative so they have stopped the antibiotics and pulled his IV's for now. The tests the Infectious Disease doctor ordered have also come back negative. He is still concerned about the elevated white count and is researching what else to test for. Aaron's calcium, alpa-phosphorus, and Vit. D levels in his bones look much better and should indicate that his bones are in the healing process. The only changes made were to take one vitamin supplement away and give him 19 mls at each feeding.

Aaron's echo also came back and is troubling. The nitric oxide does not seems to be working. His hypertension has not resolved and has gotten worse. The right side of his heart now has diminished pumping function. They treated him by turning up his flow on his oxygen and gave him lasiks in hopes he would start to come down on his oxygen needs. The lasiks helped with his swelling but neither worked in getting his O2 needs down. They turned his flow back down lower and stopped the lasiks. I spoke with the nurse practitioner later yesterday afternoon and together we went through all of Aaron's echo reports. We both agree that things are going in the wrong direction. I pointed out that Aaron was doing so much better after his first round of the nitric but that things changed. She said any kind of "stress" could send him back into the pulmonary hypertension. He went back on the nitric right when he had his infection and right before we discovered his fractures, so I would definitely consider him "under stress"! When we left last night her plan was to call the cardiologists at Primary Children's and have them come and see Aaron today. She said sometimes they like to do a consult over the phone but that she is going to insist they physically come and look at him and insist that he is a priority patient.

Last night Aaron was weighed and measured. He weighed 980 grams (2 lbs. 2 oz.), measured 31 cms, and his head circumference was 26 cm. The bigger Aaron gets the easier it is for him to be treated for his many ailments. With his flow turned up it is difficult for Aaron to continue to make progress eating orally. We did talk about that in rounds but until he can breath and eat at the same time he will continue to get his feeds pumped into his stomach. Our primary nurse was back on last night. We told her of all our concerns and frustrations over the last week. One nurse we had during this last week called her at home at 3:00 a.m. the night Aaron took his turn to get her opinion on what was going on. We love our primary nurses and know they are just as concerned about Aaron as we are.

Saturday, July 09, 2011

Puppy Photo

Aaron seems to be doing better this afternoon. He was agitated when we were changing his diaper, and he wanted me to put my hand on his back when he was going to sleep. He still isn't opening his eyes regularly, but he seems to be much better than before.

He had an elevated white cell count in his spinal fluid, so we were treated to a visit from an Infectious Disease physician from Primary Children's. At this point, he doesn't think that he's going to find anything, but this is our second spinal tap that has ended up looking funny (too many red an white cells in the spinal fluid), so our Nurse Practitioner gave him a call. He asked us a whole spectrum of questions. Do we go camping? Do we have pets? Where have we visited in the past 9 months? Do we eat raw dairy? Do we get cold sores? All fun stuff. He's ordered some tests and someone from his office will be talking with us again in the next few days.

"He looks fine to me"

After taking Joseph up the mountain to cub camp I headed over to the hospital. I talked with his nurse to find out what happened during the night and looked in on Aaron. He was very red and clammy. He was finally maintaining his temperature better but was still knocked out. When I did his cares at noon he barely moved around. I asked her what meds he had had and she said he had received Adavan earlier in the morning but nothing other than that. His last dose of morphine was at 7:00 p.m. the previous day. The nurse said it would be a really good idea to be there for rounds so I could talk to the doctor. So I waited, they didn't come until 1:30, by then I was exhausted.

They started with the nurse practitioner giving his stats. At one point she said, "a cbc was run just after midnight because the mother was worried" as if I was worried unnecessarily. Hello, I'm sitting right here and it was a combined concern between the nurse, night nurse practitioner, and me!!!! At the end of her report she then said, "I looked at him this morning and he seemed fine to me." I was miffed to say the least. This n.p. has not ever had Aaron before so she wouldn't know what "fine" is. The Attending then looked at me and said, well we have Mom here, lets hear what she has to tell us." I was grateful for that.

I explained that being completely placid was atypical behavior for him. I told them that my boy was feisty and fussy and a complete stinker when you messed with him. I told them I liked that my boy was a stinker and when he lays there for over 24 hours without opening even his eyes that I knew something was wrong!!! I told them that Aaron is currently wimpering and then would "give up". That was not my boy! I also pointed out that he had no drugs in his system that would help him with pain, yet he looks un-bothered by his many fractures. He also should be showing signs of morphine withdrawal and wasn't. All night we struggled to keep his temperature up and could only do that by piling 8 blankets on top of him while his father was holding him skin-to-skin and that 4 of them were heated and when he was put back in his heated isolette another heater was brought in to help. The doctor looked at me and said, "I'm concerned he is getting an infection and we should do a full septic work-up on him!" I about jumped out of my chair and hugged him. I don't like it when Aaron needs the IV's and spinal taps, but this time I felt like I was begging them to do the full work-up.

The doctor asked me if I had any other questions or concerns and I told him that I was told there would be paperwork in our basket for me to sign for Aaron's immunizations and it wasn't there. The n.p. then said, "It wasn't there because I took it out." I asked her why she did that and she said she had to talk to me before I could sign it. I told her Aaron's previous n.p. had already spoken to me about it and had left it for me to sign when I came in. (By this point I realized that this n.p. and I were going to have some issues!) The doctor started to tell me the benefits of the immunizations and I stopped him and told him I was pro immunizations and that I had 4 other children who have all had them and that I have read the paperwork several times over and if they would just give me the paperwork to sign I would happily do it. The n.p. wouldn't give it up and left without giving it to me. grrrrr! The doctor asked me who our primary care doctor would be after we left the hospital. I looked right at the n.p. and said, "Actually I need a few recommendations because my other kids see an N.P. currently but I would much rather have Aaron see an M.D. ! I know it wasn't nice but she set me off when she started her power trip! She doesn't see him every day, she doesn't know what "normal or fine" are. Seriously, every other n.p. has either called me or come to talk to me when I am there and always asks if I have concerns about Aaron, don't just show up and act as if you know better than his mother what "fine" is!

So far the blood work has come back with only slight elevations of his white cells. The n.p. who has Aaron today has already come in to look at him and the first thing she said was, "this isn't my little peanut, what is wrong?" Thank you! She thinks he may have something going on with his heart and is ordering an echo today. I'm glad to have an n.p. who recognizes something is off with him and wants to get some answers. We are heading up now and will post later.

Friday, July 08, 2011

Rough Turn

Last night, Denise and I got to the hospital and Aaron was sleeping. We were informed that the doctors were concerned with pain management, so they had doubled Aaron's morphine. His temperature was dropping, so I got him warm with skin-to-skin, but it took a long time to bring him back up. This whole time, he was completely asleep - didn't even wake up for the diaper change (usually a sensitive time for him). We had assumed this behavior was from the double dose of morphine. We ended up sticking around for midnight cares to see if things improved as his morphine wore off. They didn't much. He finally woke up for us but was still very lethargic, certainly not the sensitive and irritable little boy we know. He had been awake for about a half hour when we left at 1am.

When we got home, we called back to check up on him, and he was out once again - now well after the morphine dose had worn off. He was once again non-responsive and losing his temperature. Over the course of the night, they brought in a porta-warmer to help him maintain his temp and they increased his oxygen flow.

At this point, we (us/nurses/nurse practitioners) are of the opinion that this is not due to the morphine, but that it is more likely an infection. They drew labs last night, but things came back almost all normal. He is once again lethargic this morning. Denise is heading up right now.

We have left our kids with my sister and her husband, who are in town from Virginia for vacation. Happy vacation to them. At least our kids will be entertained with their cousins.

Also, we totally forgot about Joseph and Cub Camp this morning, so Denise had to rush him up the mountain. Fortunately, it looked like it was going to be on the way to the hospital. I'm guessing she will spend most of the day up there with Aaron while everyone tries to figure out what is going on.

Once again, we find ourselves asking for your prayers. Please pray for Aaron. We know that prayer is what has carried Aaron as far as he has come. We know that if it is God's will that he continue, we still need to ask for these blessings to be poured out of the windows of heaven. We know that all of the prayers that have been offered on Aaron's behalf have been heard, and your prayers will be heard once again by our Father in Heaven who knows what is best for our little family. Please pray for Aaron.

Thursday, July 07, 2011

2 Pounds!

I only have a minute today as we have company coming in just a few short hours and I have an entire house to get cleaned up. Aaron hit the 2 pound mark last night at 910 grams. His belly was distended again and a little on the firm side so he most likely had a large stool on its way out so that may go down. He had a tough day yesterday. He was agitated all day and inconsolable, at least to the nurses. They were not sure if he had another break or if something else was bothering him.

He had a tough day yesterday. He was agitated all day and inconsolable, at least to the nurses. During rounds they decided that he most likely is starting to build up a tolerance to the morphine. The question then is do they give him more or try something else. They decided to add a sedative in between the morphine doses. This worried me as we were making good progress with his feedings. They also took out his OG tube (oral gastric) and put in a NG tube (nasal gastric). This allows him to have his mouth free but it also does not allow air out of his belly (burps) so with his abdomen bigger its something they will need to watch closely.

He did great with his feeding last night and is now able to take the pacifier all the way in through his mouth. He was really tired though so he only took 1 ml but the nurse said the quality of his feeding was better than the quantity he took last night. He did great while I was holding him but was fussy when we left last night. We called this morning and they said he had his fussy moments but he didn't have any A&B's last night which is good. (Personally I think he is now awake and alert more and wants to be held. That's what other babies want when they are 39 weeks. If he were 3 pounds bigger he would be home and I would be holding him. Just my opinion.)

Wednesday, July 06, 2011


Unfortunately I forgot my camera last night so I didn't get any pictures, but it was a great night while I was there. At his 9 p.m. cares we had to mess with him quite a bit, changing his diaper, giving meds, re-taping his OG tube, weighing, measuring his belly, and finally getting him out to sit with me and eat. By the time we got him out of bed he was fully awake. We decided to see if he wanted to eat orally and he did great. When I put him on my arm he immediately turned he head and rooted around so we gave him his pacifier and started to drop the milk in his mouth. He sucked down everything we gave him and had to refill the syringe twice. He ended up taking 1.4 mls through his mouth which in reality is a tiny amount but to him it was the most he has ever taken and we were thrilled. We could hear him sucking and swallowing which is a big step while still maintaining his O2 stats. He weighed in at 880 grams and his belly went back down to 19 cm, which is where we like it. His feeds were also up to 18 mls. While I was holding him he started to destat after his feeding was complete. We were trying to figure out why he was struggling when I heard and felt a minor explosion in his pants. He immediately shot back up after that and sat with me for about 20 more minutes before he started to get fussy. I knew it was because his pants were full. After changing him the nurse weighed his diaper and it came in at 16 mls of stool, amazing considering his feeds are at 18 mls. He had two more A&B's last night one at Grade 1 and another at Grade 3. I think they are still related to his pain but there isn't much more that can be done for that. Poor guy, hopefully the calcium and Vit. D start to help repair them soon. We thought he was supposed to have another echo yesterday but it didn't happen, so maybe today it will.

Tuesday, July 05, 2011

4th of July

This year the 4th of July was a bit of an oddity for us. Usually we have great plans to spend with family or friends with barbecues or breakfasts and especially fireworks. When we woke up yesterday morning we really didn't have plans other than our ward breakfast. We were told in church to have the kids decorate their bikes for a children's parade and to head over to one of our parks by 9:00 am. When we crossed the street we were surprised to see what this breakfast entailed! It was amazing! The breakfast spread was great, the kids (and adults) were treated to a bounce house, face painting, snow cones, and a "snowball" fight with flour bombs. They also participated in a parade that included a police escort, drummers, super cute cheerleaders (the Bishop's wife), and amazing decorated bikes. We all had so much fun! After everything was over and cleaned up I headed up to the hospital.Aaron and I sat together for over two hours. He was happy and didn't move a muscle and because he didn't set off any alarms I think they let us be. When it came time for his cares I put him back in his bed and hurried to pump a bottle for him. The nurse changed his diaper and Aaron went nuts. I think she may have caught his foot at a funny angle and because it was time for his next dose of morphine and hadn't been given tylenol at all during the day he felt the brunt of the pain. This caused him to go into a Grade 4 A&B. I felt horrible for him. Later that night his belly was bigger than we like which also concerned us. After leaving he had another Grade 4 A&B followed by a very large stool. It seems like he is at his limit of pain threshold and anything else that is added sends him into these A&B's.He eventually settled and I made my way home. I found my family sitting on our favorite sledding hill watching the fireworks. From the hill you could see shows going off all over the Salt Lake Valley. We could see the shows but didn't have to be near the bone crushing booms that sends one of my sons into hiding. It was amazing, a perfect end to the day!

Sunday, July 03, 2011

Pool Time and Puppy Photo

We headed out for some much needed family time in the sun! I'm sorry to say this was my first trip to the pool with the kids this year. Normally we would be headed there every day. We had lots of fun and filled our bodies with some good Vitamin D!

When I came in this week I discovered this "patch" on Aaron's back. Normally babies get a bracelet identifying who they are and who they belong to. Because Aaron is so small the bracelet doesn't fit so this is how they "tag" him. As if his absence would go unnoticed, he has a constant stream of people checking on him so he wouldn't get very far. Since the discovery of his fractures we have countless nurses and staff come to whisper sweet words of encouragement and sympathy to him and us. The word of his prognosis has spread quickly in the NICU.
I spent the morning yesterday with Aaron at the hospital. He is mighty uncomfortable these days and squirms every time he is touched. He can handle about an hour of skin to skin time and then needs to be put back in his bed. The nurse practitioner has ordered a special gel mattress for him so that he won't have any pressure points while laying in bed. It won't come until sometime next week so they are getting creative with the smaller gel packs and different positions they put him in. He is weighing in at 830 grams and is up to 17 mls on his feedings. A typical newborn will take somewhere between 45-60 mls at each feeding. He has a cute, little, sweet neighbor, Khloe, who is tiny too. Hopefully we'll be neighbors for a while. We've gone through 4 this week. We are happy to report that Aaron is no longer the smallest baby in the NICU he has come a long way from where he started.

Friday, July 01, 2011

Picture Update

Aaron had a tough day yesterday. He was having a hard time breathing and it seemed the pain killers weren't enough so they ran some blood tests. His white count was normal but his crit came back at 24 (low!) and so they decided to give him another transfusion which means two new IV's. He got 11 cc's yesterday. The most he's been given at one time. They stopped his feeds again but started him at full dose after he was finished. I was also able to hold him last night for the first time this week. When I got him his O2 was at 45 when I put him back it was at 32! When I put him back it always has to be turned up but this time he only went up to 36 and when I called this morning he was at 28. So much better! Changing his diaper is a bit scary as we try not to jostle his broken legs. He was weighed last night and came in at....... 810 grams!!!! He has officially doubled his birth weight!

Here's what we have been doing this week, Strep! Isn't there some rule that you are not supposed to get sick the last week of school??? This week has been filled with doctor's appointments and antibiotics! Not fun! I had my 6 week check-up yesterday. Good news, my blood pressure is back to normal so no cardiac follow-up or blood tests! My iron is also good so I don't have to add supplements this time. Hooray for that, they are nasty! Sam had his last surgical follow-up today and is doing great. We said thank you to his surgeon and said we hoped we would not have to see him again! Hopefully by tomorrow the antibiotics will have done their work and we can so swimming, my body is craving some sunshine.
Here's what I also do during the day. Pretty much my day is scheduled around pumping. Aaron at first would take 1/2 of what I would pump in one sitting for the entire day. Now he takes about 2 of the bottles I pump in a sitting for one full day. So, as you can see I'm starting to get quite the supply here at home. Good thing I have an extra freezer in the garage!