Tuesday, January 31, 2012

A sorta fairytale

We arrived in Birmingham Thursday night. I had been dreading the night before surgery because I figured we would get no sleep; a hungry Judah is not a happy Judah. He normally eats about 4 ounces at a time and when we were preparing to feed him for the last time at 11:30 PM I told Micah to go ahead and give him 5 just so Judah could try to get as much as he could. He drank every last drop and slept until we woke him to leave for the hospital at 4AM. He must have known how important it was for him to eat and rest. He hardly cried until we went back into the waiting area where we spoke to the doctors, nurses and anesthesiologists. Once they started poking him he was not happy so I spent most of that time rocking and cuddling him.
Micah and I both held it together pretty well until it came time to walk him to the OR. We had to stop on some red tiles marking the point we could not pass and hand him to the nurse. Micah and I both kissed Judah and once I gave him to the nurse he looked at Micah and gave him the biggest pout I have ever seen and it just broke my heart. I will never forget that look. Micah and I started walking back to the waiting room but I just started crying and we stood there and hugged each other for a long time. It struck me that that was the last time I would ever see him like that. It was so heartbreaking.
When we got back to the room they gave us a pager and we went out to the waiting area. They told us it would be a while before we heard anything and when we got a page after 20 minutes it scared me. It was just the ENT doctor saying everything was going fine and they had put the tubes in his ears. He said there was a lot of fluid in them and the audiologist would perform a hearing test while Judah was asleep, and he passed for the first time EVER!
The next time we heard anything was maybe two hours later and Dr. Grant came out to let us know that Judah was in recovery and they had taken his breathing tube out and he was breathing on his own but was still asleep. I swore I remembered the doctor telling us that we would be able to go see him in recovery once he was awake, but when I asked him if we could go see him he said no, that we would see him when it was time to go to his hospital room. That bothered me a little but I didn't think a lot of it at the time. The doctor said he 'looked cute' and 'everything came together nicely' and 'it's a new face'...I didn't particularly like that last comment, and I was especially uneasy that we had been denied seeing him.
It was two more hours from the time we spoke to Dr. Grant that we finally were told we were going to our room. Micah and I went back to go meet Judah and saw his bed at the very end of a long hallway. My heart was beating so hard and it didn't help that Micah started humming something akin to the Jaws theme. I can't really explain what I felt when I saw him for the first time. He looked so small in the giant hospital bed they had him in. He was moaning in pain and looked so swollen. I can't even say that I instantly 'liked' the way he looked because it was so jarring seeing him like that, and it was just SO different from the Judah I handed over to the nurse just hours before.
When we got to our room I sat down and held him for an hour or so. He was so out of it and I spent a lot of time staring at him and trying to figure out how it would all look once his swelling went down. He would be fine one minute and then moaning and crying in pain the next. I had to go to the bathroom and when I got out everything was going to hell. He was having a very hard time breathing, was obviously in a lot of pain, and kept getting a panicked look in his eyes because he couldn't get a breath. The nurses started coming in and trying to get him oxygen, they called one of the surgeons who came in and tried different positions to see if that would help him breath easier. They concluded that maybe he would be happier if I held him, so I held him upright while the doctor crouched down and held an oxygen tube up to his mouth and nose to help him get air. We sat like that for at least 45 minutes while we waited on a 'nasal trumpet'(a long tube that is inserted into a nostril to open up the airway) and to see if he would stabilize. He was hooked up to a monitor that kept indicating his blood oxygen level was repeatedly dropping. While they were fetching the trumpet, the doctor calmly told me that he would not be able to stay on a regular floor with the trumpet as it was considered an 'unstable airway'. I thought I was done having to hand my baby over to the nursery but I took it ok at the time and resigned to the fact that it was the best thing to do.
Once the trumpet was inserted he did ok for a little while and then started crying in pain and started gasping for air again. The nurses were coming in to prepare to move him to the NICU and they informed me that we would not be able to stay at the hospital with him. I lost it then and had to give him to the doctor because it pained me so much to see him like that, and when I cried it seemed like Judah cried more. When they put him in the bed he started destabilizing again and his alarm kept beeping. Everyone seemed to be in a panic and it eventually got to me so bad that I had to leave the room. I went for a walk and cried and cried and cried.
When I went back up everyone was gone and my dad was waiting for me. I sat down next to him and he hugged me and I cried for a long time. He ended up taking me back to the hotel we had stayed at the night before to see about getting us a room and to give me some space from everything. I hated to leave Judah but hated seeing him like that more.
All of that took about an hour and a half and when I returned to the hospital I went in the nursery to see him.
He looked awful and kept waking from sleep with a start and crying because he was hurting so bad. They gave him a dose of steroids to see if that would decrease the swelling and help him breathe easier. I didn't stay long because it was too hard... I wish I could explain this to make it easier to understand, but he looked different, acted different and didn't 'recognize' us at all. I know he was very out of it but I couldn't stand it. I wanted my old baby back.
In a way it was a blessing that he stayed in the NICU because it allowed Micah and I to get a really good night's rest. We were so exhausted, mentally and physically, from the day's events.
When we returned to the hospital the next morning Judah was sleeping in his bed and they had removed the trumpet. Micah and I called his name and when he awoke we instantly saw the look of recognition in his eyes. It felt so good when he tried to smile at me and you could just tell he was happy to see us. We felt a lot better too because his swelling had gone down a lot and he looked much more like himself. The doctor came by and spoke with me and said he had done very well during the night and would be moved to a regular room as soon as one opened up. He took a bottle then and continually ate well after that.
To put all of this in perspective, a girl I have been talking to had her son's repair Monday morning at the same place, by the same doctor. They were able to see him in recovery (which lets me know that we weren't able to see Judah because of the state he was in) and was eating from his bottle 15 minutes after they got into their hospital room. She said he was only 'out of it' for about two hours after that. They are already on their way home and it is only 1 PM on Tuesday. The doctor said what happened with Judah may be as high as a 1 in 300 complication.
I am so happy with the way his repair turned out. I am so glad we didn't go with the Latham because I can't imagine it looking better than it does and we would have gone through all of that for nothing. I am getting used to the 'new' Judah and I fall in love with his little face more every time that I look at it. He looks so perfect and I really couldn't ask for more.
Judah has gotten better and better with every passing day. He is getting back to his 'normal' self and is still pretty mellow but in good spirits.
I'm sitting here looking at Judah now and it still feels so surreal that a change of this magnitude is even possible. I feel like this whole story has so many elements of a fairytale; love, struggle, danger, resilience, a touch of the unbelievable, and ultimately, a happy ending. Even though this is but one chapter in our journey, I am happy that we are on the road to recovery and to be writing this as history.

2 comments:

  1. I've been following your journey on Facebook and it was still suspenseful reading your thoughts on this blog post. So much has happened already. I am so glad that Judah is feeling better :)

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  2. So sorry that you guys had such a crazy time of it, but so very thankful that things improved so quickly (even though I'm sure it didn't feel like it at the time!) and that you are all at home and doing good! Little Judah is such a handsome little guy. It's so amazing what big changes this one surgery makes for our little ones who are cleft affected. I would just look and look and look at my little one after surgery as well trying to wrap my mind around this new little face on my sweet little baby. It took a while for the wonder and newness of it to settle in. :) Just as before surgery, Judah is such sweet perfection! I'm so glad that things were resolved and that you are all back home doing good. Happy continued healing sweet little Judah!

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