While resting in the hospital my fever finally broke. It had taken about 24 hours and I was getting nervous that my infection wasn't improving. I woke up that first night soaked in sweat! But I was glad to be feeling better. At about 6 am we got a call from the NICU. Ryan and I went upstairs to go check on our son.
Overall his first night went well. But early in the morning his lung had collapsed (pneumothorax) The doctors did not have to take extreme measure to help him, instead they repositioned him on his side and he responded well to that and he stabilized. At least by my memory that is how it played out. Other than that our day 2 was uneventful. We spent the day in his room and we prepared to go home the next day. A day I was absolutely dreading! Even though we only lived 15 minutes from the hospital. The thought of not going home with my baby devastated me.
Since our son had survived the night and seemed to be doing well the doctors told us their plan for him going forward. He was scheduled for a head ultrasound a week from his birth to check for brain bleeds. They explained the different levels of bleeds and depending on what kind of bleed he had would potentially cause other issues. Fast forward a few days and things were pretty boring. He was losing weight, but that was to be expected, otherwise he seemed strong and was doing well with his breathing he was still on the oscillator.
Of course I was preparing myself for the worst. I asked the doctor if he had a level 4 brain bleed would he be showing any signs or symptoms of that? The doctor said that yes, most likely he would be having trouble with his vitals or his head circumference would be changing. Our boy was showing non of these. I was hopeful. Even the doctor said he was confident that a level 4 bleed would not be present. They said "if you are going to have a 23 weeker, he is what you want" Our boy was a little NICU rockstar.
That first week our son received two blood transfusions. Each time an amount of 10 ML of blood. The first blood transfusion I was a nervous wreck. And I sat in his room the entire time while it was being administered. During the 30 days we were in the NICU he received a total of 7 transfusions. Each one got a little easier, and almost became routine.
Our first week in the NICU had passed and it was the day of his first head ultrasound. I was there with my parents, since Ryan was running late from work. I needed someone else in the room with me while the doctors explained the ultrasound. I'l never forget the doctor's words to me as he came in the room. He said" I'll just cut to the chase, its not good" Our son had a grade 4 brain bleed on the left side. Again, I went numb and tried to listen to what the doctors were telling me but I couldn't tell you what they said to me. It would be another week before they did another ultrasound to see if the bleeding was getting worse. It was possible that the bleeding would stop and not get any bigger. So I clung to that.
I'll give you the bullet points for the next couple of ultrasounds-
Week 2 - The grade 4 brain bleed had not gotten any worse. The doctors actually thought it was shrinking.
Week 3 - The grade 4 brain bleed was now a grade 3. But he had been diagnosed with hydrocephalus. I'll go more in depth on this another time.
I thought that the hydrocephalus was our biggest problem. And was coming to grips that our child would most likely have some severe disabilities. Instead, our son developed NEC. An infection of the bowels. The night nurse called me at 6am on Tuesday, December 12. They had found that the risidual in his stomach was a yellow color. They stopped his feeds to give his stomach a rest and hoped that would do the trick. Instead he continued to get worse that day. And on December 13th he passed away. The infection was too much for his little body to fight off. I'll talk more about this day in another post.
Thank you so much for sharing your NICU journey with us. I hope that blogging is helping you to process everything that has happened. Please continue writing and sharing. Sending you so much love, hugs and peace.
I remember what it was like being in the NICU and trying to take in all the doctor has to say and how grateful when someone was with me to hear it to. I am sorry your son was not able to heal and that he lost his fight. I am sending many hugs your way and we are here when you are ready to share more. Nicki
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