It Keeps Getting Better

I never thought I would be celebrating some of the things I have recently come to appreciate, but after the week we’ve had every little accomplishment is worth the elation.
Yesterday we removed the oxygen and 36 hours later he has had great respirations and saturation levels. They slowly weaned him off bringing him down on his CPAP and eventually replacing with a smaller nasal cannula. His darling face is so much cuter without all that obstruction.

Today Dr. Mulrooney decided to remove Finn’s PICC line and commented on the clinical improvements he has made. An echocardiogram last night indicated perhaps a small improvement in his heart, but not enough to warrant any excitement. Our Cardiologist, Dr. Hills, said there was definitely no sign of anything getting worse. It’s only been 3 days since he has been on the Carnitine supplement so it would have been quite a feat to have a drastic improvement. Here is hoping that over the next few days and weeks we start to see some change.

Dr. Bhombani, the Geneticist, has ordered more single gene tests to see if we can continue to look for reasons that Finn’s heart would be enlarged. He mentioned that due to my gestational diabetes, we could see this sort of result in a child. However, I was completely diet controlled with my most elevated blood sugar being a 131 post meal. So it still doesn’t completely add up. If that is the case and the GD is to blame this event could potentially even resolve itself. What? We went from a progressively degenerative fatal childhood disease to a heart condition that may resolve itself in a few months/years? That is a quick 180 degree change in just 2 days. Believe me, I would rather have it this way than the alternative. We won’t see results from these labs for 4-6 weeks and there is no immediate concern or need for treatment until we get them. Not like the metabolic or genetic diseases which required attention as soon as physically possible.
With all this wonderful news flooding in I finally felt comfortable having visitors to meet Finn. Previously it was too hard for me to even think about it. I needed to focus all of my energy on the three men in my life and not worry about everyone else. Today is different, now we are on the right track. Grandma Linda was thrilled to be our first visitor and loved snuggling up on her newest little grandchild. She is such a baby lover and it felt so nice to have Finn finally meet her. Soon he will get to meet all his other adoring family and fans. It’s likely a matter of days now.

When I returned to the hospital this evening, after dinner and bedtime with Asher and Jeff, I was told that they are removing Finn’s NG tube. More good news! Basically we are just monitoring him and waiting for the green light to go home. Two days ago I thought we were doomed to repeat these long days and nights at the hospital for 1-2 months through a medically invasive treatment. Now I am looking at 1-2 days before I can have my boys all together in the same place, at home where they should be.
I wish I had a mulligan. A do-over. The feeling of being robbed of my son’s first week of life is weighing on me a bit. The newness and excitement. The smells and sounds. The sleepless nights and figuring out how to balance life with a gregarious 2 year old eluded me for this first week. There were moments of sounds, smells, excitement, sleeplessness and balancing life with Asher, but not in the way it should have been. My son’s first week of life consisted of being poked, prodded, overmedicated, stuck in a NICU crib and fed through a tube. The balancing act was trying to get a toddler to school and drive back and forth to the hospital without breaking our “normal” routine. The sleeplessness was due to fear and anxiety. The smells were antiseptic soap and hospital and the sounds were the beeps and bongs of machines going off. Soon this will all be behind us but I will never have that first week back. I guess we need to make week two extra special. So, if I don’t return and phone calls, emails or texts it’s because I am busy inhaling every moment with my three boys.

January 21, 2017


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