Teak was in the NICU at Dell Children's Hospital for 12 days. We left on Monday, Nov. 8th. The last two days and nights we were in a "sleep in" room where there is a full size bed and bathroom similar to a hospital room. It was nice. We had Teak in there with us. Got our first little taste of what is was like to be parents of a newborn. Yikes. Especially nursing. Goodness, they weren't kidding about eating every 2 hours.
His little white crib, bed monitors and all. He still had to be hooked up to the monitors but it was for his own safety. It was frustrating though because it was a travel monitor so it sat under his crib and kept going off with every little movement. So it made you think something was wrong with him but nothing was wrong. We figured out which button to push to make the sound go off. I know it sounds bad but I promise we knew he was okay first. Plus, the nurses see it on screens outside. They don't need the sound. It was very sensitive to minor movement and he was moving a lot.
Alright, so we had a little scare just after Teak's surgery. The 2nd night he was in the NICU, Chad got a call early in the morning around 5ish from the on call doctor there stating that Teak had some episodes. They weren't sure if they were seizures or what. He would clentch up with his arms up but still bent and arch his back and essentially hold his breath or stop breathing. The first time the nurses had to give him air through a baby sized air bag press thing (not sure what this is called). They had a neurologist come and take a look at him. He had maybe a couple more, not as severe. So they scheduled an EEG.
Chad and I actually witnessed one together. Our nurse had gone to lunch and we had just gotten back from eating. He tensed up just as they had stated he was doing and his monitors start beeping and sounding off. His skin got really pale and his lips starting to turn blue, literally blue. I can still see the image in my min and forever will. It was one of the scariest moments of my life. I immediately thought to touch him but can't even remember if I did or not because no one was coming in the room. I thought surely the nurses hear this and know that our nurse is out right now. Why in the world would they not respond?! Chad runs out of the room as I follow. He yells "HEY" down the hallway. At this point, it feels like a scene from a movie or an episode in Grey's Anatomy. I just see blue scrubs coming running down the hallway, maybe 4 or 5 but it seems like 15 nurses. He is coming out of this episode by now but they all start checking it out. Where am I...hovered in a corner of the hallway shaking, crying. Chad comes to embrace me. One of the nurses comes out of Teak's room saying, "Where's mom, where's mom?" I turn to her and she gives me a big hug and says its going to be alright. She understands its scary...
So now that we have witnessed it, it really puts a perspective on things. The EEG that they do doesn't really show any signs of seizure activity but it isn't exactly clear. So as a precaution they decide to start him on seizure meds, phenobarbital.
Little side note: He is already doped up on fentanyl for pain from the surgery. When we speak to the neurologist, he states that these episodes could be seizures or they could be a reaction to the pain from the surgery or even from the pain meds. This is not uncommon for newborns to react this way and then never have any more episodes. He says that starting him on the phenobarbital wouldn't hurt anything, however, it can make him very drowsy for quite some time.
Ugh, seriously. Fine, just do it. The first dose of it they have to give him in two different doses. And it does knock him out. He is so tired and drowsy. I have never seen a human being sleep that rock hard. Poor thing, it is kind of heart breaking. Then after a day or so they do another EEG. They are about to give him a 3rd dose. Literally, the nurse has it in her hands, and the neurologist's nurse practitioner runs in the room and says to stop don't give him anymore because the EEG was clear. The nurse asked for it on paper and they go and sort it out. He never had another episode after the 3rd day he was in the NICU.
The doctors in the NICU do rounds everyday. If you are in the room then they will open up the door so that you can hear them discuss your child. So the main NICU doctor is a young guy. I don't catch his name until the end of our stay so always call him the young doctor to Chad. He is pretty straight forward but I have to say that I wasn't very nice to him the first time we spoke because of some questions that were being answered with doctor talk instead of laymen terms.
So, one day at rounds, he is commenting on one of the other doctors notes about the episodes and states that he thought it was all because of a reaction to the fentanyl, the pain meds they had Teak doped up on. Sounded like the other doctors didn't want to say this for sure but that was his opinion. My thinking, he sees babies all day almost everyday, I liked his reasoning. If only babies could talk...
When you have spina bifida myelomeningocele you can also develop hydrocephalus, or fluid on the brain. It is basically spinal fluid that is building up and not draining correctly for certain reasons. Teak has yet to develop this to this day, praise the Lord. However, a few days after the surgery, his back starts to swell up a bit around the incision. Our neurosurgeon and one of his nurse practitioners comes in and take a look at it and explains what is happening. They stated it is just building up and this is basically normal but they have to watch it. A couple things, it could be absorbed back into the body, it could stay this way then he would have to have shunts placed to drain it or it could cause fluid to build up in the brain and he would have to have shunts in his head. So they calmly state they will just watch it for the next few days and schedule another EKG. This stresses me out a bit.
I will tell you this though, that night when Chad came to pick me up he could tell I was a bit stressed. You have good and bad days as anyone would if your child is in the intensive care unit especially if you just had him and your hormones are whacked out. So, I told him about the fluid and what Dr. George stated. I told him that we needed to pray about it together. He said, well then lets do it. So we placed our hands on Teak's back and I prayed out loud. All I remember saying was that I knew we had asked a lot of the Lord in the last few months and that he had delivered on everything and more, we were so thankful, but that we were asking him to please remove the fluid from Teak's back, etc.
I tell you what, that fluid started going down and never re-appeared...now, you can say that could have happened if we had prayed or not but I know what I know and I know that God removed it.
Teak has yet to develop hydrocephalus. I say yet because they state that they can develop it up to even adulthood. However, spina bifida babies tend to develop it within the first 2 weeks of closure then up to 1 year. This is the most common time frame. It doesn't mean you are in the clear after a year but the percentages are lower. I have seen a couple different ratios but I believe that 98% of people with spina bifida myelomeningocele develop hydrocephalus and have to have shunts. Correct me if I am wrong, it varies in my notes.
Our time in the NICU was shorter than a lot of other SB families but we had our trials and tribulations. Every SB baby, child, adult is different. There truly is not a standard or an index on what will happen and when and how extreme the SB will be but they are all very special children, people and we are all blessed to be a part of their lives.
Teak now has physical therapy once a week. Simone, our PT, is wonderful. We love her. She is great with Teak. Teak moves his legs like a "normal" baby. He starting sitting up around 5 months old. He has had great neck strength since he was 1 month old. He is continuing to meet all the "normal" developmental milestones of a baby. He is full of life. If you could only hear this boy's laugh, you would melt like butter on hot corn on the cob. He is also very serious and has been scowling his eyebrows since he was in the womb. I promise, we have the 3D pics to prove it. He is just taking it all in, very smart boy, watching, learning, strong minded, strong willed.
