Six days. That’s how long we had to wait. Six long, excruciating days until Avery would have his first brain scan to check for bleeds. Those first six days he was on min stim (minimum stimulation) in an effort to keep him calm and still. Diaper changes occurred every 3 hours like clockwork, expedient and no nonsense. If he did have a bleed, they’d need to ensure that it didn’t worsen. In those six days I touched my son once. A compassionate nurse looked at me across his isolette as she changed his diaper. I watched everything; true to my nature I had to soak it all in, see it for myself, study it. “Do you want to touch his foot?” Boy, did I. I reached out, opening the portal gingerly. My right hand darted inside and I ran my pointer finger along the length of the bottom of his foot. It felt like velvet, satin. Luxurious and unadulterated. As quickly as it entered I withdrew my hand lest anyone see the rule breaking pity that had been offered to me. One touch in six very long days. That one touch got me through.
Brain bleeds are common among micro preemies. A micro preemie (versus just a preemie) is defined as a baby born before 28 weeks gestation and weighing less than 1 lb 14 ounces (some sources say 2 pounds). The technical term for a brain bleed is an interventricular hemorrhage or IVH. These hemorrhages are graded on a scale- level 1, 2, 3, 4. The worse the bleed, the worse the prognosis. Sometimes, babies will need pressure relieved when they have a bleed and require shunts or other procedures. I won’t pretend to be an expert because I don’t know much about them and that’s fine because as it turned out, Avery didn’t have one. We celebrated the good news on that sixth day.
It wasn’t all roses, though. The doctor explained to us that Avery DID have a bleed inside his tiny head, but it wasn’t inside the ventricles of the brain. Instead he had a parietal (right side) subarachnoid bleed. This means that bleeding occurred in the fluid filled region below the arachnoid and above the pia mater on the right side of his head. This is right under the skull’s surface. We were simply told that they would watch it with scheduled brain scans and that they expected that it would begin to heal. It was no longer bleeding and was thought to have been a result of his quick and violent birth. Ok. As long as it wasn’t an IVH, we were good. I’d been researching them from the time they mentioned the brain scans. Funny, I never read about subarachnoid bleeds.
Except to say that it was absorbing, nothing else significant was ever said about the bleed. Periodically we’ve been asked if he had an IVH by doctors, nurses, therapists and my answer is always the same. No IVH but a subarachnoid. Let me be clear, I’m not placing blame here. Until the day I expire from this earth I’ll be grateful for the doctors and nurses who saved my son’s life. Their hands work as God’s hands each and every day. I owe them my son’s life. There is no place for blame here, only gratitude that my son is laying here beside me asleep right now. We just didn’t know.
For the first few months out of the NICU, Avery seemed to be on schedule with his adjusted age. It wasn’t until around 9 1/2 months actual, 6 adjusted, that I began noticing things. His clenching of his left hand and foot. The tightness in his arm and shoulder. His preference for his right arm. He couldn’t roll yet from either his belly or his back. He wasn’t babbling or trying to talk. That’s when I called ECI and asked to have him evaluated.
Avery is delayed in all areas. He can now, at 15 months, roll both directions effortlessly. He gets onto his side and pushes himself semi-upright using his stronger right arm. He can’t sit unassisted or stand alone. He’s said 3 words: mama (3 times), Dada and baba. He just began mimicking expressions but it is hit and miss. He’s silly and ornery and does things his way so you never know what you’re going to get. He works hard though, and impresses both myself and his therapists on a regular basis. A month ago I was lucky if he’d eat a half jar of food a day. Now, he eats voraciously. If you don’t spoon it fast enough he will slap the tray and cry. He’ll easily finish two jars a day even with cereal added in. We’re beginning to add textures so that he can begin table food within the next few months. We’ve had people give him a bite of something and he chokes and vomits or they’ll insist we should just GIVE HIM A FRY. You can’t do that with Avery. His tiny throat is scarred and damaged. He had a breathing tube down his throat for 5 weeks and a feeding tube for much longer. He isn’t a typical child. He needs to be worked up slowly, gradually, to new textures and foods. Believe me, if it was that easy, I’d be doing it. The last thing we want is him associating eating with choking or pain and becoming scared to. Once he’s orally adversed its very difficult to overcome. He’s getting there in his own time.
Around his birthday we noticed his right eye going inwards. At first it was just a passing thing, maybe once a week. Recently, it’s become difficult to take a picture of him without his eye crossing. We scheduled our yearly with Dr. Hittner and last week we saw her. Flipping through his chart she stopped at parietal subarachnoid hemorrage. That’s it, she said. That’s what is causing this. He’s got a loss of muscle control as a result of that bleed. He needs to see a neurologist immediately. His cerebral palsy symptoms, everything can be attributed to that. His eye is healthy and has no damage. It is the muscles around his eye and within his eye that just aren’t strong enough to function properly.
The news was hard to swallow. I began to tear up as I always do when they’re telling me something is “wrong” with Avery. That brain bleed wasn’t so minor after all. Outside the office that morning I did what Arick refers to as “my thing” and I googled. I don’t know why I’d never googled it in particular before but now was the time. I typed in “parietal subarachnoid hemorrhage.” Expert googler, I looked for a reputable medical source and clicked. The first line read “parietal subarachnoid hemorrhages usually result in death.” I closed the window. Crap. Seriously? Death? Logical person that I am I was behaving completely ilogically. My son was alive…I was holding him! He survived it. Time to move on.
Avery hasn’t seen the rehab doctor or neurologist yet but his therapists and pediatrician are certain that he has cerebral palsy. He’s a classic case of high tone on one side. Soon we’ll see those doctors and know what type he has and have a game plan for the future. We don’t know that Avery will walk. There’s so much we don’t know. I work with him daily, stretching his tight muscles and working on movement. He can do things now that I only dreamed about 3 months ago. He isn’t content sitting in your lap if there’s things that can be explored. He twists himself until he’s out of your grasp and then dives. Usually he’ll be stuck within a few minutes and Momma has to rescue him but it doesn’t slow him down.
I have faith both in God and in my son that this will not stop him. His determination is something like I’ve never seen before. If we knew that the brain bleed was cause for concern before, it wouldn’t have really changed anything. I’d have still had to wait for the signs and symptoms to manifest. Some babies have bleeds and they heal fine and go on to not have any delays. Each child is different. So we’ll see. I know he won’t let this stop him. So I can’t let it stop me. I can’t cry about it or spent time pitying him. We have too much work to do!
At least now I can take comfort in snuggles with him when I’m feeling sorry for him. I’ll say his name and when he looks up I’ll smile and he will return his crooked little smile as if on cue. I’ll tickle his foot and he will laugh until he turns red. I’ll tuck his little head into the crook of my arm and we’ll nap together in the middle of the afternoon.
Yeah, six days was nothin’.
Six days old, we carefully touched our tiny son’s body for the first time.