So, ultimately, the bottom line is that I owe each and every single one of you large thank yous. All of you following, all of you praying are having an equally huge impact on my son’s life, his battle and will to survive, and his ability to breathe another moment. So thank you. Thank you. Thank you. This is a bitter-sweet post to write, still so many unknowns, but I know all of you want answers like I do! && you all deserve to know what I’m capable of telling you, and what information Josh and I have learned and are ready to share with all of you!
So, welcome to the NICU ….
Last night, Tuesday (1/27/15) night, Gabriel had a seizure. His neonatologist came up to my room at 11:15pm (which gave me more confidence in leaving him downstairs in general to eat and rest, knowing they’ll come find me). While there is no way to know 110% sure it was seizure activity without the EEG hooked up during an episode, his behavior and movement were characteristic to seizure activity. Seizures are common in L1 babies, so it does make since. Josh and I took a trip to NICU afterward, and with some phenobarbitol, he was comfy and resting.
Yesterday, doctors performed an ultrasound through Gabe’s soft spot to segment his brain into “slices” and see where and how much fluid was in his brain. This procedure prompted a new possibility that instead of just Hydrocephalus, we may be dealing with a more severe Hydroancephaly. I need to personally do some more research as I am not real common with the details of Hydroancephaly, but in all of my literature and research, I do not find a direct correlation to L1 Syndrome. That said, Hydrocephalus is a direct genetic marker of L1. The extent of damage and dysfunction cannot be determined at this point, and probably will not be determined until it happens day by day and we see the battles he faces as he faces them.
Today (Wednesday 1/28/15), Gabe underwent his brain surgery to place the VP shunt now in my son’s head and body. So basically, Gabe’s ventricles together measured at a 9, with a very thin showing of brain tissue along the outside “edges” of the ventricles measuring about 5. I will have to draw or find an example photo to show you what we should see vs. what we are seeing. Anyway, surgery went well… we couldn’t have asked for a better procedure! It was fast and simple; no complications in the O.R.
Today’s nurses were amazing. Noah Gabriel’s scheduled surgery time was 3:30. We arrived at 1 in the NICU to spend some time with him prior to surgery. When we arrived, I didn’t even have a chance to ask to pick him up. Our awesome nurse suggested I Kangaroo, and I couldn’t have been happier. So, for almost an hour and a half, he rested in his safe little pouch; within minutes his heart rate evened, his blood pressure lowered, and overall he just seemed more content and happy.
He loves his daddy too <3 We were very thankful for these 2-1/2 hours we spent with him. We chose to remind him how far he has come; what a miracle he’s already shown us. How important he is. We told him what was happening, and why we were sending him away for the next hour or two, and we kissed, hugged, and cuddled.
When it was time to prepare him for his surgery, daddy placed him in his Taxi and set me in my taxi, and off we went to the O.R. We talked to what seemed to be a random assortment of people in the O.R., and then we left him. In great hands; hands we now trust with what is our life. They returned him to us alive, breathing, and what will be a more comfortable little miracle of life.
The ventilator he is on will be removed within the next 12-24 hours assuming all goes as planned. His surgery was flawless, and his recovery has been great. He is taking morphine for pain, which affects his breathing. So, until the morphine is weaned a touch, he will stay on the ventilator.
What a tiny guy amongst all the medical equipment working to save his life! But, he’s a trooper, a fighter, a warrior, a miracle. He knows what love is!
Last update I can think of tonight: while we visited post-surgery, neonatologists made their rounds throughout the NICU. We were blessed to have a lovely caring doctor tonight who didn’t mind taking as much time as we needed. She made it clear she is no neurosurgeon, and she doens’t know those types of answers. BUT, she tried to answer everything we had and told us who to ask and how to get ahold of them for questions she didn’t know. We appreciated her greatly.
The CT Scans from earlier were almost as inconclusive as the Ultrasound had been pre-surgery. We will have another ultrasound post-surgery – maybe tomorrow. She suggests an MRI, but the neurosurgeon makes that call. Her outlook was practical, but not rainbows and unicorns. She is still concerned with hydroancephaly, though she realizes the genetic marker is hydrocephalus, and she hopes that is what it is. Based on imaging alone, hydrocephaly is consistent with what is seen. This is very very severe, and while she doesn’t want our hopes in the dirt (and mine aren’t – trust me! He is already showing what he is made of no matter what his future brings us), her words were, “I have concerns that while his brain stem is completely formed and normal, his higher brain functions such as walking and talking will never happen. I’m worried that he may just stop breathing for “no” apparent reason, or that seizures will become uncontrollable. I’m worried that ….. I cannot tell you if he will live 3 weeks, 3 months, or 3 years.”
My answer to that? “Do you believe he will go home and leave the hospital? Because I do……” Her reply was, “Absolutely. Keep pumping and giving him that gold – that’s what you are doing – giving him life, giving him gold. Its worth more than gold.” (in reference to breastmilk). So… that’s what I am going to do.
You know what else we’re going to do? Take it day by day. Give him all of his firsts. We got his first haircut tonight 😉 He will get his first hug from sissy. His first park visit. His first day at the aquarium. Zoo trip. Mountain hike. You name it, he’s gonna get it <3 We love him, we do! And he’s lighting up our life!