Wisdom Heart

I thought I should mention that Sophia is presently doing very well. But, she is scheduled to have a major surgery in mid-September. As that date approachs, I will post more on current events. But, I really want to continue with the back story because it is helpful for me to write about it and also it creates a context for future posts.

Again, I am sorry for the long posts but I really want to get this story in. I appreciate anyone who is interested enough to read about this, and I hope it benefits others in some way.
So early in the morning after what seemed like the longest night of our lives. An elabortate transport was underway. A team of paramedics and an abulance moved my daughter to the NICU (Neonatal ICU) at the children's hospital. My wife, Patty, had to stay at the hospital where Sophia was born. She had to heal from the substantial tear she got during delivery. I am sure this was an incredibly difficult time for her. I followed the ambulance to the hospital with my mother.
Soon we arrived at the hospital where they were well prepared to recieve Sophia. The NICU was like no place I had been to before. For that matter, this hospital was very different than what I had experienced before. I had never been to a children's hospital and had no idea what to expect. I think I thought it would be a depressing experience because there isn't much that is sadder than sick children and this was like a mini-city of sick children. But instead I found it kind of inspiring. I will try to elaborate on this more later.
The NICU was divided into five or six "pods" each with about a half-dozen babies. Most were premature, but there were a few other "heart babies". The assigned spaces in the pods were probably about the size of a parking space, open on three sides with a warmer for the baby and a couple of chairs.
There were a ton of rules. It was a major scenario to get in the place. From the outer lobby, you had to press a buzzer. An attendant inside who could see you on a monitor would buzz the door open and let you in. Once inside, there was desk where you would have to sign in. After you signed in you were given a badge that showed your relationship to the patient and the pod to which they were assigned. There were only two badges per patient, because only two people were allowed back at bedside at a time. One of the two had to be a parent. Though they did allow us to designate others who could go back without us (grandparents).
Once you were signed in, there was an elaborate hand-washing ritual. You were buzzed through another set of doors. Inside was a small room with a trough sink. Above the sink were individually packaged brushes with medicated soap in them. You were to scrub your hands with the little brush for two minutes and dry your hands with paper towels. This had to be done everytime you entered the NICU.
After you were in you could go to see your baby, but you were not allowed to stray at all from that course. Privacy was a very big concern but the pods were open environments, which made this difficult to enforce.
When I first got there Sophia was assigned two RNs. Most of her care was handled by a pediatric resident, who answered to an attending physician. They rounded twice a day around shift changes.
Another rule was that no visitors were allowed including parents at shift change. I think this was another privacy policy, since the nurses had to pass on all pertinent info about every patient to the nurses coming on for the next shift. These later proved a good time to get something to eat. Parents were encouraged to be there when the doctors would round. This was something I always made an effort to attend. It was a good time to find out the details of Sophia's treatment as well as voice our concerns and wishes regarding her care.
Patty arrived two days after Sophia was transported to the children's hospital. By this time I was pretty well aclimated to the environment, but she was of course very disoriented by the experience. I am sure her main concern was to hold Sophia as they had been seperated from shortly after her birth. In the time she was seperated, they had placed several I.V. lines and monitors for showing her heart rate, respiration, and oxygen saturation. She had been on oxygen for much of the time they were apart but I think she was on room air or just what they call blow-by oxygen at this point. She had a large I.V. in her head that allowed them to give her nutrition interveinously. I am sure it was a pretty dramatic scene but she was doing much better than the last time Patty had seen her.
During her time in the NICU, she was still being treated with the prostaglandin I mentioned in the last post. In fact it was the doctor's assumption that it was the only thing keeping her stable. Unfortunately, there were some pretty substantial side effects associated with this treatment. The worst of which was apnea. Apnea is when the respiration becomes so depressed breathing just stops. This made it impossible for us to relax. The monitors I mentioned earlier became an obsession for us.
The most important of the measurements on the monitor was the one called O2 Saturation, or Sats for short. Because of Sophia's heart condition, her sats would range from 65-75%. Normal is around 99-100%. This was an indication of the oxygen in her blood. Now, the nurses would set a range on the monitirs and if she went above or below certain numbers an alarm would sound. Everytime an alarm would sound, she would have to be stimulated to get her to breathe or given oxygen or have her airway cleared of mucus/secretions. There were times the sats dropped below 45%. Like I say this number became our obsession. It was our indication of whether Sophia was doing good or not. We started calling it "Sat TV", but it was truly terrifying.
I will continue this tomorrow.
Thanks for checking in-Michael