Our New Normal

At least for this week. I wake up, pump, say goodbye to Finn and head home before Asher and Jeff wake up. Dishes, laundry, shower. Bring Asher to school. Back to the hospital for snuggles and doctors visits, updates, beeping machines, more questions, more people, force myself to eat, pump again and again. Head back to school to pick up Asher. Eat dinner. Bath, bedtime stories, pump again. Back to the hospital for more snuggles and bedtime stories with Finn. 
On Sunday and Monday we had the sweetest nurse, Liz, in the NICU. Tonight when I got back to the hospital she had dropped a note for us. I am so touched that she was thinking of us and kind enough to leave such an encouraging note. They really are so sweet here. 
Today was not all good, however. We didn’t get an update on Pompe like we had hoped. The Geneticist said yesterday that he thought preliminary results would be in today but we didn’t hear anything. On the brighter side our morning nurse mentioned that the Cardiologist stopped by when we were bringing Asher to school and said to start treating Finn like a “normal child, not a sick baby” going forward. As normal as you can be in the NICU I guess. More snuggles, clothing and tummy time. Possibly even trying oral feeds. Normalish. 
We spent a lot of the day snuggling and chatting, waiting. At one point our Neonatologist came in and we started talking about the optimism of our Carnitine Deficiency diagnosis. He was not as optimistic. He maintains that Pompe is still a very real and most likely culprit for our baby’s enlarged heart. All the hope and light that I felt yesterday turned back into a deep pit in my stomach. It sounds like he is fairly certain. He just doesn’t see how it can be anything else based on his knowledge and assessment of Finn. This was a huge blow. The rest of the day went by slowly and in silence.
I am so amazed by my village. Tonight dinner was delivered by my work. I had gestational diabetes so I wasn’t allowed to eat carbs for the entire last trimester. At work we joked about how great it will be for me to eat carbs again. My team sure delivered. There is enough food for us to eat all month. We called my neighbor and invited him over for dinner. Pasta will be breakfast, lunch and dinner at the Olson house for quite a few days. Thank you HI for your unwavering support. 
Work sent enough dinner to feed us for a month! We had to call over our neighbor to help us eat. Thanks HI!
Not how I pictured it but I will take my snuggles any way I can get them :)Our nurse the first two days in the NICU stopped by. She knew how important it was for me to give Finn my BM.
After dinner Asher took a bath and we snuggled in bed before I had to head back to the hospital. He picked out four books for me to read to Finn and offered his little Mickey Mouse to keep Finn company. “I am the big brother so I get the big Mickey, Finn is the little brother so he gets the little Mickey” he said. What a sweet boy. He really is the best big brother, even though he only met his little brother briefly. I just adore this angel child. 
Back at the hospital I am trying to do that “normal” thing with Finnegan. I started thinking about what we would be doing if we were at home on maternity leave. I would be putting him in cute outfits, reading him books, playing, rubbing lotion and massaging him, changing his diaper. All things I can do here. I have been more active in his care and that feels normal. He is wearing clothing and we are looking at picture books. I am reading to him and singing to him. As normal as we can be in this abnormal world. Our night nurse said we can attempt an oral feeding at midnight. I am counting the minutes my sweet boy. I hope we are successful.
So, this is our new normal, until we figure out our other new normal after diagnosis.
January 18, 2017


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