I've always been told that Preemies are their own entity - that they are so resilient. Finn has proven that time and again already in his first day of life.....what an entrance he's made.
Although he had an APGAR of 7, he was working hard to breathe once he arrived at the NICU they did place a breathing tube. We finally got to see him after about 4 hours. I will admit that it was shocking to see him at first, given his size, but I still thought he was the cutest baby I have ever seen.
Here comes the complicated part: I always like to start with the good news-
#1: The echo that they did when he was born actually showed promising results. Finn's left ventricle was much more developed than they originally thought so he does not have a diagnosis of hypoplastic left heart syndrome!
#2: They thought the transverse arch of the aorta looked as if it was developing and should be ok without intervention but they will continue to watch it. He for sure has a coarctation of his aorta and will need repair. The big question is: will he need open heart surgery or a "simple" incision under the ribs - only time will tell.
Here is the bad news - the news that ruined our next 2 days....
The nurse practitioners in the NICU really impress me. Being a nurse practitioner myself, I enjoy working with them and they are so good at explaining everything. The "saga" started with the NP telling us they saw "a few things" on Finn's chest x ray that looked curious. They had trouble passing an OG tube during the original admission. Something in his esophagus was blocking it from going through.
They also saw a few vertebrae in his thoracic spine that they called "hemi-vertebrae". They weren't sure what to make of that either. They did have a name for this grouping of findings, however. They called it VATER association. This is not like a syndrome, but a grouping of problems babies can be born with that sometimes go together...although they do not have to have all of the findings to have the diagnosis. I'll let you read up on it as you like;
http://www.cincinnatichildrens.org/health/v/vacterl/
The findings Finn as are the cardiac, vertebral, and tracheo-esophageal. He does not have the other associations that could be a part of the problem - which is good.
Needless to say, he bought himself a surgery consult. The surgeons wanted to take him to the operating room to both look at his trachea to see if there was a fistula given he was difficult to ventilate and his esophagus to possibly diagnose esophageal atresia. There were a lot of unknowns. There was a lot of fear on our end as parents too - transporting a 2 pound baby to the operating room, doing a procedure on a 2 pound baby, keeping a 2 pound baby warm. *sigh* such a complex situation becoming more an more overwhelming.
Finn left for the OR around 1:00pm. We went downstairs so I could get discharged from the hospital, ate lunch, then realized that hours had gone by. It was now around 4pm and we had not heard any news. Finally, the neonatologist came in and told us what happened.
Apparently when Finn was in the operating room, everyone's worst nightmare happened. Long story short, his belly began to fill up with air, he became difficult to ventilate, perforated his small bowel, dropped his heart rate and oxygen levels, and they had to do CPR on my sweet baby. They ended up having to do what we call "disaster control" and took out part of his small bowel where it had a little hole in it, tied off the fistula so air was no longer going into his belly, put in a chest tube for a pneumothorax, and I think that's "about it." The neonatologist was quite concerned that he was not going to make it through the night and that he may have a lot of neurological insults give what happened to him in the operating room and that he was low on oxygen for so long.
Shock. The only word I can think of to describe what I felt. I couldn't process words, questions, information...anything. All I could do was cry and think that this just happened to my son. I thank God that our sister - in - law Adriana was here for us during this time. I don't know what we would have done without her. She was so calm and, although tearful at times like the rest of us, was able to process the information and ask the questions that we just could not ask during this hard time. We love her so much and she was able to be here for us at the perfect time....and she's a physician so she could ask some pretty awesome questions :)
We waited and waited and waited and finally it was time for Finn to come back. The team who saved his life - seriously - all looked shocked. I work with so many of the MDs and respiratory therapists and anesthesiologists that were a part of this team and I am so happy to know they were there with Finn. I think everyone was traumatized.
He came back and I remember seeing him thinking I have never seen a baby look this way.He had so much blood, so many tubes, so many issues. I have taken care of ICU patients but they were adults and I remember thinking that an adult would have such a hard time pulling through or even surviving an insult such as this. My heart was so heavy and the crying was not stopping. I was a hot mess.
The surgeons said they want to take him to the operating room again tomorrow and fix what they had started. His heart took quite a hit but if he survived the night, they would do an echo in the morning and see if he would tolerate a big operation.
We went home that night knowing that if he did make it through that tomorrow would be a hard day. It was hard to leave but we only live 10 minutes away and I would call them to check in.
As the night went on, I continued to call. Every call I made they said things were getting better. His oxygen requirements were going down and he was doing well! He shocked us and the medical team on how well he pulled through this and his brain ultrasound showed that he had no bleeding in his brain - which they called a "miracle". words don't describe how proud of my son I am for fighting so hard. Such a strong little miracle.
We aren't out of the woods yet, though.....stay tuned.
.JPG)
