One of Those Days

Well, as we have known since the beginning our time in the NICU would be a roller coaster ride, and lately it has been mainly up so I have been bracing for a down, today was kind of the down day. We found out that little Sammy has a PDA, which stands for Patent Ductus Arteriosis which means he has a duct, a vessel, that goes from his aorta which has oxygenated blood to the pulmonary artery going from the heart to the lungs carrying blood that needs to get oxygenated. So, all that craziness means that patients with PDA's can overperfuse the lungs and cause some swelling in the lungs and also some swelling of the heart, all of which can have their own set of problems. There are many adults who have PDA's and don't even know it, so they're not super serious. Many times the PDA will close (heal; go away) on its own. So, the best case scenario is that the PDA will close on it's own. The other options are as follows, from most desireable to least: wait until he's a year old and then he can have it closed through a catheter much like when someone has a stent placed in their heart, treat it with a drug called indomethacin or ibuprofen but that has it's own set of risks and side effects that we want to do without, and lastly would be surgery but the good news is that the surgery is really common and quick and usually with great outcomes.

Then, Amelia is having a little bit harder time breathing and is requiring more oxygen than she used to. Oddly enough, though Sam has been the one who needed more oxygen and who has the PDA, his oxygen requirements have gone down and his chest x-ray looked great today. Bizarre. If Amelia's oxygen stay up for a while they will put her back on CPAP until she can tolerate breathing better.

They both are still so adorable and wonderful. We got see Amelia's big eyes today, she opened them bigger than ever before and looked straight at Jenny and I for a long time. I held her skin-to-skin for about an hour today and she was so wonderful, so beautiful and warm against me. She was squirming around a little and making the cutest faces and shapes with her mouth. Oh how I hurt with love for them both. Sam was just hanging out in his little house today just being Sam. I'm going to be going back up there here before too long to spend some more time with them. There's not much to do there besides sit and stare. I put my hands on them and think and pray and talk with them. Makes me feel good. Makes me feel at peace. That's all we can do. We have to just sit and wait and pray and hope and trust. That's not easy, not easy at all for Americans who want instant gratification and positive results immediately. Not easy for new parents who have wanted to have babies for a long time. Not easy for a momma who hates hospitals and tubes and wires and beeps and bells. Not easy for a dad who knows waaaaaaay too much about all the things that can go wrong in the blink of an eye. It's just plain not easy.

How does all this effect us?
There were tears today. There were heavy hearts. I had dropped Jenny and Joyce off at the hospital while I went to run errands and it was when I was out that I called and found out about the PDA. I have to be honest, I didn't want to go back to the hospital. It's a little shameful to admit that my first reaction was not to run through walls if I had to in order to be with my son, but I just didn't want to go where I knew pain awaited, lurking behind every beep and wire and tube. I wanted to stay and stare at nothing, just so long as I wasn't having to find out more of what I already knew. I just took a final that included PDA's and the complications and treatment and risks associated with it. I didn't want to face it, but I also didn't have a choice. It was my son, my wife who needed me. I went.
Jenny struggles with this whole situation like we all do, like anybody would. The NICU is a scary place and foreign place for her. The babies are so small and fragile and unreactive to parental stimulus. It is hard to be a mom like that. It is hard to be there period for anyone. It is extra hard for someone who wanted a baby for so, so, so long and wanted to bring her baby (babies in our case) into the world the most natural way and now have to go see them in a plexiglass square that makes you sea-sick to look through it. It is hard to develop a bond, and sort of true connection through a plexiglass bubble. How do you do that? How do you tell someone to go up to a room full of the tiniest people you have ever seen all fighting for their lives with wires coming out of them and monitors beeping and bright lights on and herds of people all around to bond and become close like that? How does happen? It is a very uncomfortable place for Jenny right now. A sad place. This is not how it was supposed to happen, not to us, not to her. But I guess why not us right? Nobody said we were exempt from the rules of life. And it is life we are living my friend, there have been few times when I have felt this much alive, this much life, both really good and really sad.

Sammy has a hole near his heart, we have two in ours.