The NICU dance was in full effect today- two steps forward, one step back. They are big steps forward and we are putting all our energy into that right now ..
James was able to sneak away from work for a few hours this morning and come to see our boys. I was excited to be with him. I had nightmares all night and knowing we would be together today.. even if only for a few hours was comforting. When we walked into the hospital and the person at the front desk stopped us. She wanted to know their room numbers and told us that we would not be able to see our boys for hours because babies were having surgery in their unit. I tried not to go into panic mode. Is it my boys.. are they ok… I gave a release for the doctors to do emergency procedures at anytime. I can’t always be there and need to know they will get the care they need. The woman assured me it wasn’t Peter and Maurice and agreed to call my nurse so I could have an update.
Peter’s nurse came right out. I felt relieved to see her. She was there the first time I met my son. We were in the NICU. I was just wheeled out of recovery about an hour after my c-section. The pain was unbearable but it was hard to tell if it was from my body or my heart. I cried and Hus nurse cried with me. I would later find out that in her personal life she has gone through tremendous loss herself. She understood a mother’s pain. We immediately bonded.
She has spent more time with my son than anyone else. She knows his personality and calls him “feisty”. He already has a reputation in the NICU. We laugh and tell her stories about the Peter he is named after… his Papou. She makes sure he is clean.. and breathing .. and she is his advocate when it comes to his medical care. She knows his likes and dislikes. I consider her to be like family. She said she would take us to see my boys and had the approval of her manager. She knew I would be worried and that I couldn’t wait hours to see them. In only 8 days she knows me well too.
She took us to Peter and I immediately felt better. He gained weight, looked nice and pink and was resting. I really didn’t look at the monitors this time.. just did what the nurses tell me and access the actual patient.. my baby boy. It’s hard but I did it. He had graduated overnight to a new isolette. It is smaller and looks a little less Sci-fi than his original one. The nurse last night told me his environment no longer needs to be so well controlled. A little graduation but our first and it felt so big! He just looked better.
She then started telling us he had a surgical procedure scheduled for the afternoon. I could feel James immediately look at me. A picc line or a central IV with a long catheter that is threaded up to the heart was planned because he was spitting up after feedings. Tolerating feedings is necessary for growth and development just like in “regular” babies. Reflux in preemies is common because the esophageal sphincter is relaxed and gastric contents can easily enter the esophagus. Add to that the tiny wire he is fed through going through the sphincter not allowing it to fully close. I watched yesterday Peter spitting up and struggling to keep his food down. This morning , the doctors changed the delivery to over three hours rather than a big amount quickly. It made sense and I asked if we could hold off on the line until we saw how he did with this change. They first wanted a stomach x ray to be sure there was no reason why he was spitting up. This seemed reasonable.. they said they had to check for areas of dead or ischemic bowel another common issue of preemies. Their little bodies send blood to the most important organs first.. the brain.. the lungs.. and sometimes there isn’t enough for the bowel and it can become necrotic or turn into dead tissue. This made me nervous but I wanted to be sure holding off on the line wouldn’t hurt him. The X-ray technician walked passed us in the hall after completing it and the doctors took a quick look… I hold my breathe.. ” it looks good!” … and I can breathe again. We made a deal that if he had a good night and no spit up we could hold off on the picc line. Needless to say I will be praying all night.
He had a repeat echocardiogram scheduled today as well. He no longer has a functional outflow obstruction. When he was born.. just last week.. the left and right side of the heart were very enlarged from pumping against the extra volume caused by twin to twin transfusion syndrome. Each time his heart would beat a little faster than normal the blood couldn’t come out. At a few days old his feet turned blue. The heart tissue itself was blocking blood flow. This is now GONE! He still has a little enlargement of the left ventricle but I’m hoping this will resolve soon too.
Both he and Maurice went from heart failure to normal functioning hearts in a week!! It’s just so amazing!!! They both have holes in their heart.. Peter a large pda which is common and should close on its own and Maurice a vsd which may require open heart surgery… but the heart function .. the ability of the muscle to pump out blood to the body is now normal. I now look at their teeny bodies as these incredible machines repairing every piece little by little. I am in awe of them.
In regards to Maurice today he is doing well. His kidney function is not perfect yet but getting there. He is tolerating his feedings and slowly growing. He will likely have his umbilical line out in a few days which means I can hold him against my chest… a moment I yearn for.
Everything considered it was a good day. If I am worried about spit up and not heart failure or renal failure.. it is a a very good day. I gave Peter a pep talk and told him how much we love to eat and he will have to learn in this big Italian/ Greek family. I know he can do it! The only other thing was that Peter had an “episode” or ” desat ” today. His oxygen saturation level dropped and he needed to be stimulated to breathe. The nurse was not concerned and said this is also normal at times in preemies but we will be watching him closely.
It is some ride but everyday I’m a little closer to having you home.. I’m thinking of you always .. good night by babies. 💙💙