So things were looking pretty good. I was able to hold Jack and eventually got good enough to take him out of his crib to hold him with out a nurse around. He was starting to open his eyes more and look at me more. I held him ALL the time. No one could tell me that I was holding my baby too much. I don't really think you can hold a baby too much in those circumstances.
The first time Jack was fed was about a week after surgery, he was given 3 ml's continuously over an hour. That's about a teaspoon! He was also given a very tiny amount orally. I would hold a nipple up to his mouth and a nurse would squirt the formula in so he could use his sucking reflexes. It took him a few times to figure out what to do with it, but then he became a pro! He was also wearing clothes...a sure sign in the NICU that your baby was doing better and stable.
Now it was just time to wait, and waiting is hard. We had an appointment set with the surgeon that would be doing Jack's ostomy reversal surgery. We even had a date set for his surgery. I had a routine. Matt had a routine.
Things sound pretty good considering the circumstances, right? We thought they were too...
When Jack came off of the ventilator after surgery, he had something the doctors called a "stridor". A stridor is a high pitched wheezing sound...Jack sounded like an asthma patient...or a dog's squeaky toy. You could hear it as soon as you entered his room in the NICU, above all of the monitors, people and buzzers going off. Every day at rounds I brought this up to the docs. They kept reassuring me that it would go away in time and that it was from being on the ventilator.
But I watched it get worse, and worse and worse. I constantly was telling the nurses that something wasn't right, I was now watching my baby struggle to breathe. I don't think I will ever be able to get those images out of my head. How could this be? Jack has never had any breathing issues, never. He was never on oxygen and his lungs were perfectly healthy. Finally Jack's nurse agreed with me that something had to be done. He looked miserable and his chest was retracting awfully with each breath he took. He stats were beginning drop, which were not like him at all. Again, I felt uncomfortable holding him. I thought I was holding him wrong to make his breathing worse. So I just let him rest peacefully in his crib and read to him. He was finally given a nasal cannula to force air through his nose and down his airway. This worked for about a day and a half. The next step was the CPAPP to force air down his airway...The mask looked somewhat like an elephant's trunk and covered most of his face. There were lots of steroids given and nothing was working.
Jack with the nasal cannula.
This is not Jack, but another baby on CPAP, It is very cumbersome and looks horribly uncomfortable. It never stayed on him very well.
Jack back on the ventilator. He looks so bad here from extra fluids and steroids.
Suddenly, there was a flurry of activity going on in his room and in the hall where I was standing also. I thought it was another baby, but it was mine. I heard a nurse say that a baby was "coding" and suddenly it seemed like every nurse in the NICU was in my baby's room. Finally a nurse asked me if that was my baby and then I knew that it was. They could not get the breathing tube down his airway and had to do CPR on him. How could we be having another nightmare? I was given water and a chair, someone had to call my husband because I couldn't dial the numbers or talk. I had an amazing nurse that held my hand through this until my husband got there from Ottawa. The tube was finally in, but this episode caused Jack a lot of trauma. He was grey and practically lifeless except for some twitching. The twitching was seizures.
This led to EEG's, an MRI, a spinal tap and countless other tests. No one knew why he was now having seizures. He was put on anti-seizure meds. His poor little body went through so much...I knew it was now all in God's hands. I kept thinking to myself that he could not take anymore...he was too tiny to have all of this happening to him...how was he ever going to pull through?
It was another long night, early mornings and another long week, waiting for him to recover from this "episode" and waiting for answers. A bronchoscopy was scheduled with the surgeon to see what was going on with his airway. We were told that he may have to have a tracheotomy. Everything was wait and see, wait and see...
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