Baby Hayes update

I think the past 4 days have finally started to catch up with me. Last night when Ben and I left the hospital I was feeling very emotional, extremely tired, and even a little feverish. We came back to Bountiful and I spent some time with Maddie. Since we have been gone about 6 or 8 hours a day with Hayes she has been showing some hints of feeling a bit neglected. Yesterday afternoon we were at Walmart and I told her that we were going to go back to her friend's house and then Daddy and I were going to go back up to the hospital to see Hayes. She replied, "Poor Maddie." I said, "Why poor Maddie?" and she said, "Because you're leaving me again." That just about broke my heart! It's so hard to cater to two children, who both need you, when they are in two different places! When I'm at the hospital with Hayes I am feeling guilty and missing Maddie and when I'm home with Maddie I'm feeling guilty and missing Hayes. Luckily, he seems to be making great improvements everyday so we are hoping it won't be much longer before they let us take him home! This has absolutely been the longest 4 days of my life. I thought the days drug on when I was pregnant but that was nothing compared to this!

I'll start the update where I left off. We have dealt with a lot of nurses and respiratory threapists who have been caring for little Hayes and I have to say that so far all of them have been great with our baby and with us. When we first got to Ogden his nurse commented on how feisty Hayes is. We had heard this from the nurses in Logan as well. That might be a little bit of a bad thing later on but for now it's great. The feisty ones are the ones that make it! Hayes was admitted to the NICU in Ogden on Sunday morning and when we arrived Sunday afternoon they had not gotten any more air out of his chest tube. While we were there visiting him we were able to change his diaper. I had done it once before so I told Ben he could go ahead. Hayes gladly initiated Ben by peeing all over the bed. This was a great thing for us because that meant we had to change the bedding (that might be the one and only time I will ever be excited to change a bed full of pee). They broke down his incubator and Ben held up his chest tube and IV while I got to lift him off the bed. This was only the second time I had gotten to hold him. Of course I snuck in a few kisses.



At that point Hayes had been on morphine (because of the pain of his chest tube) since he got there so he was a little sleepy but he was trying really hard to stay awake while we were there.



Monday morning we had the chance to go to rounds with the doctors and nurses. They had quite a few lofty goals for him that day that included getting him off the ventilator, taking his chest tube out, and getting his umbilicus catheder out. We had a lot to accomplish! I hoped my little man would have the strength for it all. We went and visited him and found that he hadn't had any morphine since 10:00 the night before so he was obviously feeling better and seemed much more awake. Here I am giving him some love.



While we were there that morning they went ahead and took some blood gases which looked great so they decided to take him off the ventilator and put him on oxygen through a nasal canula. Here he is after they took the ventilator out!



They took the ventilator out at 10 am and when we left him at 11 am he was still awake. That entire time he just layed there peacefully and stared at us. It was amazing. When we went back Monday afternoon we had a little bit of a scare. The nurse said that the doctor had checked him around noon and decided to keep the chest tube in just a little bit longer because his breathing was a bit labored still. When we went to change his bedding to clean and warmer blankets Ben was able to hold him up and as he did that the respiratory therapist that was changing the bedding noticed some air come out of his chest tube. We thought that either some air had been accumulating and the tube got jostled around while changing his bed and caught the air pocket releasing the air or his pnuemothorax had opened back up. She said since there was now a constant flow of air coming out the chest tube would definitely have to stay in. I was devastated. Hayes was acting very ansy, arching up his back and fussing so I was really worried that the pnuemo had come back and he was in pain. I felt like we were starting all over! After a few minutes of talking with the other nurses the respiratory therapist came back and started inspecting Hayes's chest tube. She felt like maybe his lungs were fine and the chest tube had just been pulled out. The tip of the tube is perforated so if it had slid out of his chest cavity and was just resting under the skin it could be pulling air from the outside causing the constant air flow. They decided to do an x-ray to determine where the chest tube was. Sure enough it had slipped out and was sitting under his skin about half an inch in. No wonder he was so uncomfortable! They went ahead and pulled the chest tube out and he immedietly calmed down. After that whole ordeal we decided to give him an some time to rest so we kept ourselves busy in Ogden for about an hour and a half while he slept. When we got back it was obvious that he was feeling much better. There was a possiblity that would be able to hold him that night but he still had his umbilicus catheder in and we didn't want to risk that coming out since it is placed in an artery so we decided it would be fine to wait. We left him that night excited about all the progress he had made that day and hoping that we would finally get to hold our baby boy in the morning!

I woke up at 3 am on Tuesday morning and called to check on our little man. They had drawn some blood gases at 2 am and they looked great so they went ahead and pulled his umblicus catheder about half way out. They were just waiting a couple hours for it to clot before they pulled it the rest of the way out.

We headed up to the hospital Tuesday morning and were met with more good news. His catheder was gone and his pnuemonia (did I mention he had a little bit of pnuemonia?) was pretty much cleared up. That morning's x-ray showed no free air in his chest cavity but his billirubin levels were slightly elevated. He wasn't actually considered jaundice since his levels were just below the line but they decided to put him under the lights anyway so that it wouldn't get any worse. But before they did that we were able to hold him!!!!!









We tried to feed him but he wasn't quite ready to eat at that point. He was awake for a little while though giving us lots of big smiles. Whoever said that babies don't smile at this age didn't know what he was talking about. Hayes's little face is always lighting up when we go to visit him and when he dreams he smiles a lot! Ben even tickled his little ribs and got a big grin out of him. Through all of this he is certainly a happy little boy. When we left him that morning he was under the bili lights and sucking hard on his pacifier. We went back last night and were able to hold him some more but they didn't want him to be out from under the lights for too long so after about an hour they put him back and we, being exhausted to the max, decided to go home, cater to Maddie who was having a hard night, and let everybody get some much needed rest! Here are a couple more pictures that were taken of him yesterday. He looks just like a boy version of Maddie in her first few days of life.







Last night was very difficult for me. I felt like we had made so much progress on Monday and Tuesday was more like baby steps. We talked to the doctor before we left and he mentioned that now that the critical stuff is resolved we have transitioned into wondering when we take Hayes home. He said that three things need to happen first. 1. He needs to be eating on his own. When he starts eating they will begin lowering his IV based on the amount he ingests orally. Once he is taking full feedings and therefore completely off the IV for two days he will have met that requirement. 2. He needs to be stable in critical functions such as maintaining his weight (he has gained almost 3 oz since he was born so that's not a problem), and body temperature (this has never been a problem even when he is out of the incubator being held). Any infections need to be cleared up (they were going to talk today about getting him off his antibiotics now that his pnuemonia is looking cleared up), and his billirubin levels have to be normal. 3. He has to be breathing on his own without oxygen. He did mentions that if the other two things were taken care of and he was needing just a little help with his breathing they would be comfortable sending him home on oxygen. They are not going to make him get to 115%. If he's at 98% and they know he'll get better they will go ahead and send him home. I asked why if his pnuemothorax was cleared up and if his pnuemonia was gone was he still breathing a bit fast and a bit labored and he said that his lungs have been through so much between inhaling amniotic fluid at birth (which they think is the primary cause of all this) and all the trauma that has happened since that they are probably still a bit inflammed. It will take a little while for that inflammation to go down. When we heard all this it felt, to me, like a lot of obstacles left to overcome.

This morning Ben had to head back up to Logan for school but is coming down after classes. I decided to take the morning off and spend it with Maddie but will be headed back up to the hospital at 4:00 and Ben should get there shortly after that. I called first thing this morning and got a report. I think his nurse is a little weird because when I asked how Hayes was doing she said, "Well....he's doing pretty good." From this response I expected some bad news but she proceeded to tell me that he had been completely off his oxygen for 8 hours through the night and that he had eaten a full ounce this morning! Pretty good?!? That's amazing!!!! They took him off his oxygen at 11:00 last night and it was off until 7:00 this morning when the nurse noticed that his saturation levels were dipping every now and then and he looked like he was struggling to catch his breath. She put him back on the oxygen while she fed him since it's difficult for a newborn with breathing problems to suck, swallow, and breath at the same time. After he ate he was kept on the oxygen but just a teeny, tiny bit. His billirubin levels were back down this morning so they took him out from under the light and she wasn't sure what their plan for his antibiotics were since she hadn't been to rounds yet. So far today we are making great progress! Hopefully he will continue to be hungry and continue to breath well enough that he doesn't need his oxygen. It's just scary because last Saturday night when we left the NICU up in Logan Hayes's dr. was very optimistic and confident that he was getting better. We went to bed that night feeling like things were looking up and then by 4am he was being air lifted to Ogden so when he does well like this I get scared that the next report will be a bad one. Obviously he is feeling better though so hopefully he will continue to progress. The doctor we talked to yesterday felt like he would be able to go home "at the end of the weekend". I take that to be Sunday. He did say though that it's completely up to little Hayes. It could be as early as Thursday or as late as into next week. I'm praying for this weekend!!!!

Like I said, we are headed up to spend a few hours with Hayes this afternoon so I'll know more about how he's doing then. We will take some more pictures and if I remember I'll go ahead and take a little video of him. The pictures sometimes don't do him justice. He's such a sweet and happy little guy!

In other news Maddie has decided that she wants to be a doctor. She was in my hospital room with me all day Friday and Saturday so she got to see a little taste of what the nurses and doctors do. By Saturday night she was taking on the full roll of nurturer. She was playing a game on the computer while I laid in my bed and every 5 minutes or so she would come over to me and ask if I needed anything. What a sweet little girl!

Also, Ben's little sister Chelsea is having a baby today!!! Her water broke at about1:00 this morning. I just talked to Ben's mom and she is doing well. She just got an epidural and is much more comfortable now. We'll have a new nephew by the end of the day!!!! Good luck Chels!