Wyatt Gill: Update: Deja vu or is this the new normal? Day 3-5 of Wyatt's journey

Today, Sunday June 23rd, started off as a pretty good day.... for being in the NICU. Kevin and I went to breakfast and were sending out pictures like crazy because his face was almost free of tubes. They had taken his repogle (stomach tube) out because it was not functioning properly and they thought he would do OK with out it. We were able to see his mouth for the first time. He had such precious lips... oh how bad I wanted to smooch him!! He seemed very happy, resting comfortably.
When the surgery team did rounds, the doctor told us everything was looking good but his stomach might be just a little bit bloated. Our neonatologist made his rounds next and said that he wanted to do a chest x-ray because it seemed that there was air leaking around/out of something in his stomach... a perforated bowel. Being a nurse, and have taken care of two babies with this in my prior OB career I knew the consequences of what this could bring. Instantly, I had a feeling of panic... the feeling of 'is this is, is this what will take him from me'. I had been so wrapped up in how good he was doing that I think I did forget about the CDH roller coaster, about the 'never being out of the woods' stories that I had familiarized myself with.
The x-ray confirmed the doctors suspicions and they put Wyatt back on the surgery schedule yet again. They told us there was a current trauma case and an acute case after that and then Wyatt would be taken back... 3 hours at the most. Again, taking care of these kiddos before I knew that this could make him very sick, very fast. I was a basket case. I was mad, and devastated, and petrified all at the same time. I was back to my negative, Debbie downer days and I just felt like we were nearing a very bad situation. Our families came to the hospital to sit and wait with us through the surgery again. When the other surgeries were over, the team came up to take Wyatt down. I kissed the lil man's hand and face and walked out with everyone behind me. I'm not sure how looking back that I didn't fall down or pass out, or just crumble because that is exactly what I wanted to do. I wanted to get in the corner, curl up into a ball, and cry like a baby.
The surgery team had explained all the 'what ifs' and 'could bes' which all sound horrible to us... Necrotic (dying) tissues, ostomy's, intestines being left open to air for healing. We were just with in reach of holding our little guy 6 hours ago and now he could potentially come back with his stomach opened up. We went to a different surgery waiting room to wait for the calls of incision and closing up and any possible complications.... just like the Friday, we were back to square one but this time it seemed much worse because this was an unexpected surgery that wasn't being done to repair but to save. I had just had a c/Section and was still in pain and on medication... this was the second time in 48 hours for baby Wyatt!! It made my insides cringe to think of the pain he would be in. This was so unfair for him and
I was helpless to stop it or to do anything for him. By far, the worst feeling yet... or at least that's what I was thinking at the time.
We had been in the waiting room for about 45 minutes when the phone rang. I picked it up and the same RN was on the other end. She said 'Wyatt is doing well, the surgeons didn't find any obvious perforations during surgery. Dr. Vane is on his way up to talk to you and explain further'. I hung up and immediately went to Kevin, and just put my head to his head.... our baby was OK. We would get to see him in a very short period of time. At this point, I knew what the 'CDH roller coaster' was... and I was ready to leave the amusement park all together!
Long story short, they did not find any active nics or perforations in his stomach or bowels. There were some old, sealed over abrasions in his stomach that were the likely cause of the bloating and air around his stomach. They assured us that everything else looked great and that they would keep a close eye on him over night to make sure we didn't run into other problems. The next few hours I am not very happy to discuss, and do not want anyone to think I am placing blame. I truly think we are getting exceptional care at Cardinal Glennon and feel that Wyatt is in the best hands he could be... but the evening of June the 23rd was very trying and frustrating!!
We arrived back to our NICU room and Wyatt was there, bright eyed and seemed to being doing very well. He had his vent back and a new NG (stomach) tube in his nose. His stomach looked much better, the swelling was down and the color looked much better. They got him all set up and comfy, and then it was shift change. The new surgeons, doctors, and nurses all came in to see him... nothing big noted. This was all around 7:30 or 8pm. When everything had settled down, I asked the RN if she thought there was an area right under his right rib that looked swollen, or like an air bubble. She agreed, but didn't know what he looked like before his surgery so thought if the MD's didn't think it was a big deal we would watch and see. She tried to flush the tube that was in stomach, that was supposed to be draining/decompressing. It didn't work. The residents were called to see what the problem was.
In the mean time, Wyatt was becoming more and more alert, and more and more aware that he had the breathing tube back and he was mad. He was ttying to gag it out and grab hold of it to get it out of his mouth. Surgery ordered x-rays to make sure the repogle, or suction tube was actually in the stomach and to see if the air that they operated to get rid of was back. I sank down to the couch in the NICU and thought, I and especially Wyatt cannot handle another surgery!! X-rays came back and the air was building up and they could not give me and explanation as to why.Everything began moving very fast, lots of people in his room, grabbing for things to start prepping him for more surgery. The nurse practitioner on my unit did not believe that Wyatt needed to go back to surgery, and it soon became evident that he did not. When she walked into the room, the first thing she said was 'everyone wait, is the suction on??' Since Wyatt had been up from surgery (about 4 hours) there had been no suction on letting air and secretions escape from his stomach. Everyone began messing with equipment and attempting to get the suction on so his poor little stomach could get some relief. While all of this was going on, I was standing by the RN trying to stay out of the way but know what was going on and a very small, sweet noise made us look at each other with such confusion... Wyatt's cry. If he had a breathing tube in how was he crying?? My little monkey decided that since everyone was preoccupied with the equipment and his stomach that this would be a perfect time to gag/pull out his ventilator.
This sent everyone into more of a panic mode. Crash carts were being pulled out, sedation medications being drawn up, respiratory was now there to place a new breathing tube, it was a mad house in this tiny little NICU room. The RN had put some free flowing O2 in from of Wyatt's mouth and nose to get him a little more oxygen while they were waiting for the new breathing tube to be inserted. When they went to give the medications to sedate Wyatt to place the tube, everyone stopped because the RN asked 'why are we reinserting the tube when he is breathing just fine on his own?' Wyatt's O2 sats were 100% and he was, again, bright eyed and looking around at all these people in a panic. I swear if he could talk he would have said 'What's everyone freaking out about?'
The rest of the night was much calmer, but inside I felt like the biggest mess! When all the doctors left the room and Wyatt was calmed and resting, I walked to the couch and collapsed. I just kept telling God 'Thank you' and telling myself that he was OK that I was OK. The tears kept coming, and the fear is still with me right now, two days later as I write this.
Yesterday was a much calmer day. Wyatt did get a CPAP machine, not for the oxygen support but for pressure to keep his lungs inflated. This is very much expected with the CDH babies because the lungs are compromised during development that they sometimes have a difficult time inflating and staying staying inflated. Needless to say, Wyatt is being watched very closely by several different nurses and doctors.... oh and his mama is now taking much more detailed notes to make sure we stay on the recovery path.
The newest news, today June the 25th, is that Wyatt is resting comfortably. He still has his CPAP machine, and we are watching his stomach very close to make sure we do not accumulate a bunch of air or secretions that could put us back into an emergent situation again.
I slept the best last night then I have in weeks, I knew we were in for a very long and stressful road... and I tried my best to prepare and knowledge wise I am doing pretty good. But emotion wise, this is kicking me and my husbands butts!! I'm so afraid to get comfortable or feel positive about anything because at any second all of this could be ripped right away from us. I need to remember that even though I have started calling my little man Superman, he does have a defect that is going to take time and patience to heal. I need to remember when I had written in previous entries that it is a miracle in its self that I am so blessed to have been pregnant with Wyatt and to have him here, with us is the best blessing a person could ever have!! I am so thankful, and so blessed but everytime I think this or have these feelings it is followed by some of the worst feelings of loosing it all. It's a very tiring thing to have your emotions pulled in so many directions every second of every day... but we are here and living it and will continue to fight it every day. To give the analogy of the 'CDH roller coaster', we were on the scariest of most dangerous rides on Sunday, and I was ready to give back my ticket and never come back... but now being on the Ferris wheel, I can look at Wyatt and see why people come here!!
Until next time....