We survived!

Hayes is 2 weeks old today. Hooray! But even more exciting is that we are finally home!!!! Certainly Hayes's first two weeks have been filled with trauma and drama. Hopefully things will settle down from here. So far our time home has been very uneventful - just the way we like it!

Sorry, to those who follow our blog, for the week of silence. Thursday and Friday of last week were certainly the hardest of the past two weeks for me. Saturday and Sunday Ben was able to be in Bountiful with me and Maddie so we were busy trying to spend time with Hayes and cater to Maddie and each other as well. When Ben headed back to Logan on Monday he took the computer with him so I didn't have access to any of our pictures. Overall, I was really emotional and really busy so I am finally stealing a few minutes to update everyone on the past week.

As of last Wednesday things with Hayes were moving really slowly. He had the ventilator, chest tube, and umbilical catheder out for 2 days but was very, very sleepy and not eating much of anything from a bottle. They were having to use his feeding tube and trying to get him up to full feedings so they could get his IV out. Thursday was filled with much the same that Tuesday and Wednesday had been and Ben and I were getting very frustrated with the lack of progress. It looked like our hopes of having our family home together by the end of the weekend were not going to be realized. Here are a few pictures from our visit with little Hayes on Thursday the 29th.

Stretch!




We were trying to wake up him up to eat and he was not happy about it!


He had some serious suction on that bottle!


When I went to visit Hayes on Friday I found that he had been moved from room 1 to room 2. His nurse informed me that room 1 was considered the critical room so being moved out of that room was certainly an improvement. We found that Hayes's billirubin levels had gone down considerably since he had been under the bili lights for 12 or so hours. Luckily, he didn't have to be under the lights for the rest of his stay in the NICU. Friday, again was a very uneventful day and by the end of it I felt as if I had been pushed past my limit. I couldn't help but feel completely depressed as I looked at him with his oxygen, feeding tube, and the IV in his head. When I snuggled my nose into his little neck and breathed him in I completely lost it! I, like most people, don't like to cry in front of others (especially strangers) but this experience has certainly cured me of that discomfort. I can't even count the number of people who have seen my cry in the past two weeks! When we left him that evening I was very, very emotional. I cried all the way home and immedietly went to bed sobbing. I laid in bed that night and felt like I couldn 't possibly endure this another minute. I just wanted my baby! It literally felt like he would be in the NICU forever! I honestly have never prayed so hard in my life. I started out by thanking Heavenly Father for all the blessings that we had encountered so far. I was grateful that Hayes was alive at all. I was grateful that he had been well enough to move to room 2 (the baby in the incubator next to him in room 1 had been there since mid July!) I was grateful for the expert care that he was receiving. We had really liked all of the nurses and respiratory therapists that had worked with him. I was grateful that Hayes was not getting worse, and I was especially grateful for his smiles. I couldn't imagine the discomfort and pain he had gone through up to that point but he still offered up a smile everytime we went to visit him. Those smiles made my day! I was also grateful for Maddie's strength through all of this. She certainly was patient and understanding as we were gone most of the time and she waited for her little brother to get better. In the end this experience has made me so grateful for my own, Ben's, and Maddie's health. It's so frustrating and saddening being so out of control of something that most of the time is not thought of - the health of ourselves and the ones we love. I then pleaded and begged that Hayes would make some sort of progress. I couldn't bear to walk into that hospital another day and see him hooked up to all that stuff and be told that he wouldn't eat and that he wasn't breathing well. I fell asleep crying with puffy, red eyes and woke up the next morning the same way. I usually called in the morning before going up to the hospital to see how Hayes's night went but Saturday morning I felt that it was pointless. I didn't feel that I could handle being told the same thing that I had been told the last three mornings in a row. I got dressed and headed to the NICU still very frustrated and feeling defeated. I walked into room 2 and didn't see an incubator where Hayes's incubator usually sat. I walked around to find that he had been moved to an open bassinet. I rushed over to look at him and was absolutely amazed! He looked so good!!! His little face wasn't swollen anymore and his color looked so healthy and pink. I immedietly noticed that he didn't have an IV in anymore. It wasn't until I put my purse down that I realized that he wasn't wearing his oxygen cannula anymore either!!!! All he had was a feeding tube. I could actually pick him up without feeling like I was dancing with wires and tubes. He was even wearing clothes! He was almost like a real baby! I picked him up and was met with this:



How can you not love that little face?!?
Here he is in his new home.



And here he is hanging out in Mama's arms. He loved staring at the lights in the ceiling.



The whole of Saturday morning I was watching his respiration and oxygen levels. I was nervous because a couple days earlier I had called in the morning to find that Hayes had been off his oxygen for 8 hours through the night but later that day his oxygen levels had kept going down and he was put back on the cannula. I was scared that that would happen again. They didn't want his respirations to go above 60 (normal is 40-60) and his were averaging in the 80s. It's hard to tell exactly because they are so erratic. Sometimes they drop down to the 30s and sometimes they jump up into the 100s. Although his breathing rate was a little fast his oxygen levels looked great! For a baby his age (greater than 36 weeks gestation) they are comfortable with a range of 86%-98% but ideally would like his oxygen levels to be 92%-96%. His average was about 93%. When we went back that afternoon his average respirations had already gone down to an average of about 60 and his oxygen level average was around 96%. After the three stagnant days we had endured this was exactly what I needed! I felt renewed and hopeful again but also a little nervous that after a day full of so much progress we would have another 3 days of baby steps. I hoped that Hayes wouldn't be too worn out to keep up the good work! The only hurdle left to jump was his eating. When I went in to see him on Sunday morning his respirations and oxygen levels were continuoly getting better and better. His doctor laid out his eating expectations for us stating that he needed to eat 60mL (2oz) every 3 hours. She was hopeful that it wouldn't be much longer until he was getting his full feedings from a bottle instead of his feeding tube. She commented that he had taken twice as much from a bottle in the last 24 hours as the 24 hours before that. I expressed to her my concerns about the amount of food that he was being required to take in. Maddie didn't eat 2 oz at a time until she was almost a month old! Also, the nurses kept bringing up the fact that he was spitting up quite a bit. Obviously his little belly wasn't able to hold as much as they were giving him. She said that Maddie wasn't sick and didn't require the same calories as Hayes does. I felt frustrated because I felt at that point that his critical issues had been resolved. He was progressing each day and certainly it was obvious that he would continue to progress. The week before the dr. had told us that they wouldn't make Hayes get to 115%. That if he was at 98% and they knew he would get better they would go ahead and send him home. By Sunday he wasn't quite at 98% but they weren't even talking to us about discharge yet! She also told me that they were worried about him having a heart murmur and that they would get an echo in the morning to check on that. To make things worse Ben had to leave Sunday evening to go back to Logan for school. My support and comfort was leaving me.

When I went to see him on Monday morning I was met by his nurse who had his feeding all ready to go into his feeding tube. She told me that he just looked so tired and comfortable and that this time she was just going to go ahead and put his food in his tube. I told her that I wanted to try to wake him up and feed him with a bottle. She preceeded to tell me that that was fine but that she really didn't think he would wake up for me. I changed his diaper and he woke up right away. He then sucked down the entire bottle that I gave him. I was so mad! All we were waiting for at that point was for him to eat from a bottle. I understand if he's tired. We certainly didn't want to wear him out because at that point he could stop progressing altogether but he wasn't even being given the chance to eat from a bottle. And certainly he wasn't too tired to take a bottle at that feeding. As I sat there holding him there were two other babies in the room that were getting discharged. One was tiny and sent home straight out of an incubator. She had just gotten her IV out that morning! The other baby was sent home on multiple medications, oxygen, and monitors. I felt so upset that they would send home a baby who couldn't even breathe but they wouldn't send home Hayes because he wasn't eating every last mL they wanted him too. I didn't understand why they couldn't send us home and turn him over to the care of his pediatrician. I would go in every day to get him weighed if I had to! I would count every dirty diaper! Just let us go! After the experience with his nurse and seeing the other babies discharged who were, seemingly, much sicker at that point than Hayes I was just plain mad. I requested to talk to his doctor and expressed to her my frustrations. She said that she would tell the nurses on each shift to at least offer the bottle at each feeding to see if he would take it.

Tuesday morning I called to see what progress, if any, Hayes had made and was excited to find out that he had eaten like crazy through the night. Between 1am and 5am he had consumed 1/3 of the mL he needed in an entire day. They took out his feeding tube and his nurse felt like if he kept eating the way he was he could go home the next day. Hooray!!!! Finally! We had a discharge goal. I went to visit Hayes that morning and his nurse went over some discharge stuff with me. In order to go home the next day he had to meed his food goal and pass a carseat test. Infant carseats lower a baby's oxygen levels by about 1% so we had to sit him in his carseat for a continual hour and a half (as long as it would take us to get back to Logan) and make sure that his oxygen levels wouldn't drop below 86% or that if they did he would recover quickly. One of the neonatologists came in and talked to me about the results of Hayes's heart echo. It seems that he has what is called a bicuspid aortic valve. The aortic valve in the heart pumps oxygenated blood to the rest of your body. It is a high pressure valve and is made up of three flaps that open and close as your heart pumps the blood. Hayes's aortic valve is made up of only two flaps that are mildly thickened. This causes a problem because the valve can't close as effectively when it has only two flaps. That can cause some blood to leak back into the heart which in turn causes the heart to work harder to pump the leaking blood out. There are two outcomes of this. 1. the valve in his heart can grow well with him and he can not ever notice any side effects or have any problems or 2. the valve can not grow well with him and continue to thicken and he could end up (years down the road) needing surgery to correct it. We will go see a cardiologist every 6 months for the first couple years of his life and then once a year after that. We did find out that they aren't completely sure what causes a bicuspid aortic valve but that it is most likely genetic. We then learned that my uncle just had open heart surgery to correct this same problem. Tuesday evening I went back to see Hayes and LOVED his nurse! She was on a mission to get him home the next day! She told me that he was 8mL behind on his feedings but she assured me that we would get him caught up and keep him caught up. I fed him when I first got there and he took the extra 8mL then. After holding him for a bit we decided to do his carseat test. I had to leave for that because I didn't want to sit there for an hour and a half staring at his monitors and getting nervous everytime they went down. I went to get some dinner and was so nervous the whole time! But, when I got back his nurse was excited because he had passed with flying colors. Yay! I was so excited! Once the carseat test was over it was time to feed him again. He ate all but 10mL of his bottle and was falling asleep. Since I had been there that afternoon he had been given a bath, eaten, been held by me for 30 minutes and done his carseat test. He was exhausted! I decided to change his diaper in hopes of waking him up a little. That worked and he took the last 10mL of his bottle. His nurse wondered if we should try to even get him ahead a bit and offer him another 10mL. I thought we should go for it. She prepared the bottle for me and when I put it in his mouth he wasn't ready and gagged a bit on the nipple. Stimulating his gag reflex with such a full tummy was not good and he threw up about 1/2 an oz. His nurse came over to me and asked what had happened. He asked me if I thought he threw up because his belly was full or because I had accidently gagged him. I told her I thought it was because I gagged him and she leaned down and whispered, "that'll be our little secret then." She was supposed to chart how much he spit up and subtract the total from the total he had consumed but she decided not to. I was SO thankful because that could have kept us from going home! When I left him that night his nurse assured me that she would make him successful. As comforting as that was I was still a little nervous because her shift ended at 3:30am and rounds (in which they would decided if Hayes could go home or not) wasn't until 8:30am. Luckily, his nurse that morning was the same one from Tuesday morning who had begun our discharge papers so she knew we were on track to go home. I was hoping she would be as diligent in making him eat. I woke up around 4:30am and called to check on him. His nurse assured me that he was still on track for discharge. I woke up again at 7:30 and called to check his progress. His nurse told me that he had eaten more than expected. Yay! Surely they would clear him to go home. I headed up to the hospital at 9:15 and was walking out with my baby by 11:30! Finally! After 12 days in the NICU he was able to leave! Hayes and I headed back to Bountiful and waited for Ben and Maddie to come get us. Here are some pictures from that afternoon taken by Cameron.











Here's Maddie holding her baby brother for the first time.



Maddie has been such a great big sister so far and is handling having the baby at home very well. We have found however since being home that Maddie has outgrown her toddler bed. This is how we found her sleeping the other night.



Later that same night she fell out of bed completely. I'm thinking it's time to get a bigger bed!

In the end, we are all so happy to be home and finally together! Thank you again to all those who have offered many, many prayers in behalf of little Hayes and our family. I know that each and every one of those prayers was heard. We have experienced so many blessings through this experience and are eternally grateful for a loving Heavenly Father.