September 12, 2013 by kruckr
Currently sitting next to Henry, who is squirming around in his boppy. He’s become much more alert and much more active during the past two weeks with a sleep/wake ratio of about 18/6 hours per day. He loves to look at everything, especially lights. He loves being able to move and hates blankets covering his feet or hands. He’s getting a lot better at holding his head up and is still working on rolling. Luckily for us he also still likes to cuddle a good bit of the time right now.
Sweet time with daddy. Love this outfit!
Henry’s been showing seizure activity for the more than 2 weeks and has been on Keppra to control activity for almost two weeks. He had his first EEG today, but showed no seizure activity. We should get the results back next week and will see what the electrodes picked up.
27 separate electrodes under the head wrap!
Next week will be his third week in daycare. He’s been doing pretty well with the nurses there and mommy is getting a lot better with drop offs in the morning. Being back to work has kind of been a blur so far, but I feel like I’m getting back in the swing of things. Although once that bell rings in the afternoon, I’m right on the kids’ heels getting out of there to get home to my boy.
At daycare Henry still struggles when eating from the bottle. I’ve purchased the comotomo bottle . It’s the closest thing to the breast that I’ve found. He seems to like it about as much as he’s going to like any bottle. Most importantly, he continues to gain weight steadily, which is pretty rare for children with any congenital heart defect, especially tetralogy of fallot. I’ve talked with the pediatrician about feeding and since he’s gaining weight, she isn’t really concerned. Most of his feeding issues should resolve after the heart surgery anyways.
His heart surgery is schedule for Tuesday, Sept. 24th unless we get bumped for some reason. It’s completely terrifying imagining him going in for open heart surgery. As scary as it is, I needed a visual to see what he was going to go through. I was able to find a video of a complete ToF repair … watch at your own discretion. http://www.youtube.com/watch?v=58qrbaxTwEk. I will admit, this kind of blew my mind. Cardio
thoracic surgeons are a whole other level of human. I can’t even recognize the matter in front of me as a human heart until it’s starts beating at the end of the video. I’ve been told it’s one of the more common surgeries performed and because of the side effects associated with ToF it’s almost always performed on infants. Knowing the surgeons have previous experience with this condition does set my mind at ease a bit more. Here are links to all the cardio team who will be working on Henry …
Dr. Moon – His cardiologist (not a surgeon)
Dr. Shillingford – surgeon
Dr. Ceithaml – chief surgeon
Right now I feel like this is the biggest hurdle we need to get over. I know the seizures are a whole other issue that will have to be dealt with in the future, and we’re planning on a neuro consult once he’s all healed. I’m sure I will be blogging from the hospital in a few weeks to keep myself sane while he’s on the table. As apprehensive as I am for the surgery d-day, I will be glad when it’s all over. Prayers and happy thoughts til then:)
Prayers are with you!! Stay strong!!