Heart of Beckett

UPDATE (4/30/13)
Today was pretty uneventful. Only a few minor adjustments and lots of snuggle time. Beckett’s Fentanyl was supposed to be weaned today, but due to his difficult evening yesterday they decided to hold off one more day. As of today, all Beckett’s routine meds are now back to oral. However, the cardiologist thought his x-ray from yesterday looked a little wet, so they did give him a one-time dose of IV Lasix. Now, once we get him off the Fentanyl and Milrinone, he will no longer have any IV drips or meds. What a glorious day that will be, and it is coming soon.
Today Beckett and I were able to cuddle a lot. He also had snuggle time with my mom, and his nurse. He just loves to be held. He played in his bouncy and we even spent time sitting him up like a big boy. We are working on his neck strength so he can hold his head up, and he does better every day. He also got to have OT today, so she worked on stretches with him too.
Around lunchtime today I was holding Beckett and his oxygen saturation gradually began dropping lower and lower. She kept bumping up his support but he wasn’t really pulling up into his normal range. He had started on 36% oxygen and had gotten up to 48%. The nurse eventually decided to move the pulse ox and placed it on his hand. It was picking up at 81. Within minutes she was able to turn him all the way down to 32%, and he has been there the rest of the day. Everyone has been saying how good he looks today. We pray he continues to gain strength everyday, each day looking a little better than the last.
Here at Riley, they are supposed to give baths every day, and they do it on the day shift. Beckett’s routine for the past few months has been to have his bath at night right before bedtime. So today I asked it I could do it with his nighttime hands on, and they said that was totally fine. He behaved so well and only cried when I had to get under his chin roll. He laid there so calmly, looking around as I scrubbed him. He got clean clothes and his hair brushed. Once we had him all ready for bed, I rocked him tightly, and he fell asleep almost instantly. It makes it so much easier to leave at night knowing he is fresh and clean and fast asleep.
Overall today was a pretty good day. There were a few times when Beckett woke up angry, but he was typically easily consoled, and he always stops if someone picks him up of course. We like days like today. Days where it seems as though we are doing the normal baby things despite the situation we are in. We long for many more of the same.
I also just want to ask for prayer for the family Jonny mentioned yesterday in his post that was being transferred with their baby from Fort Wayne. Sadly, he passed away this morning, and doctors still were unsure of exactly what was wrong with him. We ask you remember them as they are going through an extremely difficult time of grieving.
As always, thank you for sharing this journey with us.

— with Jonathan Rupp at Riley Hospital for Children at IU Health.