265th day in the NICU

What a wonderful day! We finally have a tape free baby boy!


Dad & I were at the hospital by 6:30 this morning. Niether of us slept a wink last night but we were both amazingly very awake. I was able to hold Drayke for almost an hour before Dr Y came in at 7:45 to go over the procedures. The anesthesiologist came in almost 30 minutes later to start his meds & finally everyone else came in to get him rolled out. Several nurses and respiratory therapists came by to wish him luck and hug us since everyone knows how long we have been waiting for this day and how high risk surgery is on a pulmonary hypertension baby. We were able to follow along until we got to the main doors into the OR.

We went back up to his room to wait. After about 10 minutes or so we got a call from Dr Y. Oh god, what has gone wrong? Turns out he wanted to tell us Drayke has a left groin hernia & do we want to go ahead & get that fixed. Sure, go ahead. Panic averted.

Dad worked and I looked at the news & watched an episode of Greys Anatomy. At taht point 3 hours had passed in what felt like no time at all. I got antsy & shut down my laptop telling dad I need to move. I looked over & saw Drayke's nurse on the phone. I stared at her her until she finally looked at me then she gave me the thumbs up. She was talking with the OR.

Drayke didnt just do ok during the surgery, he did awesome according to the OR nurse. He saturated at 95-100 during the entire surgery and they never had to raise his oxygen nor nitric. So, he has his trach, GJ tube, hernia repair & circumcision. The nissen was not done due to concern of potential problems that could have occurred in the OR & we all felt it was more important that he could feed rather than not potentially reflux.

Dr M, his attending this month, kept stopping in today, blown away by how well he is doing. Even his former day primary nurse came in to visit him. He is quite the talk of the floor. PH babies are just not supposed to be able to do this well. Now to make sure he stays calm he is under a LOT of sedation. LOTS of morphine & ativan. This will continue over the next 4 days then we will start the weaning process. After a week we will be changing out his trach tube and physical, speech & occupational therapy can finally really start to work with him. We have already planned to bring his swing in next week as well. His life is finally going to have some normality.

Drayke is loved, not only by his blood family, but the people at the hospital that take care of him every day, friend and co-workers and people who know of his story. Thank you so much for the overwhelming amount support & encouragement. We would not have been able to make it this far without you all.