Evan is recovering nicely from his recent illness, which I'm thinking was viral. Zach ran a temp between 102 and 103.5 all weekend, and although it broke Sunday morning and has not returned, his inbility to tell me what hurts had me taking him to our family doc yesterday to be sure all is well. Yay for Zach! Everything checked out fine, so it was either viral or was caused by teething. (Nope, no teeth yet). While there, with a doctor I work with repeatedly in the ICU's, we went over Zach's milestones again. He's so hard to gauge because I compare him to Evan, who did everything at the speed of light, except for speaking. And I have tried to be laid-back about the whole thing: Zach will do whatever when he's ready to do it.
The moral of the story is that the doctor is worried not about Zach's fine or gross motor development--those have a way of catching themelves up and any mild slowness has mostly been the result of prematurity or simply from baby chunk and resolves itself. But he was worried about the sensory stuff: that Zach still, at 9 months, gags on anything thicker than nectar-thick (the consistency of pudding is too thick for Zachy!), that he isn't babbling mamama/ dadada/ bababa yet. And so the first step is an appointment with an audiologist at my hospital to ensure that there is no hearing impairment. I should mention here that we don't think there is at all, but since it is the number one source of this sort of delay, it has to be ruled out. I can tell you that his newborn hearing screen was perfect, as was the more indepth one they did because he was premature. He has never had problems tracking us by the location of our voices. When we speak to him, he looks and smiles. We are both sure that his hearing is fine. It is more of formality than anything. Something we have to rule out in order to go to the next step.
So what is the next step from there? Well it could be one of two things. Given that Zach has always had green nasal drainage from birth, it is entirely possible, according to our doctor, that there is a pocket of fluid in his ears. It also is unlikely because he has never had a single ear infection, and usually babies with drainage problems will have fequent ear infections. We are really hoping this isn't the case with Zach because it will mean he will need tubes in his ears. Surgery. I don't even want to think about it.
So after both of these are ruled out, Zach will be seeing a developmental specialist at Cincinnati Children's Hospital Medical Center. I have mixed feelings about this. I hate that he has to even go there. This is where the overzealous doctor made the false allegation with Ben, for starters. It is also where Ben was treated by the team of pediatric cardiologists, and thus holds some very painful memories for me. And that place is terribly depressing. Nothing will make you appreciate your healthy children like a stroll through that place,where you are liable to see anyone from newborns to teens with these horrifying medical conditions. And then on the other hand, there is relief. Because while you never want to need them, you feel absolutely grateful that there is a facility a stone's throw from home that breaks ground daily in just about any treatment for children imaginable. They even work in collaboration with Good Sam to do surgery in utero if need be (Yes, it's called The Fetal Surgery Center of Cincinnati or something like that). (Good Sam is the OB Mecca I griped about while on bedrest if you followed my pregnancy blog. Gah! I hated going to that place!) If there is something wrong with Zach or he needs any sort of treatment or therapy, I can trust them not only to find it, but to be completely competent at treating him. And that is about the only ray of sunshine in this whole Godforsaken mess.
Because I cannot get it out of my head that this is my fault. That I should've lied about my contractions while pregnant. Because if I would have done that, there would have been no home uterine monitor. And thus no trips to the hospital. And no drugs. And no early c-section. But my God, the drugs...3 months of the Brethine pump, plus the oral form I took before the pump and the subcutaneous injections I got each time they sent me to the damned hospital. The mag sulfate--evil, evil mag sulfate. The indomethacin. The steroids to speed him up in there. The damned pain meds it took to get me through that last month, which my OB assured me were safe. And the progesterone shots. I keep wondering which one it was, knowing full and well that it is likely none of them that did this. Which brings it back to me. Which takes me back to those last months of my pregnancy and makes me contemplate whether I could've held on longer. It's so easy to speak of this now when I have had nine months with my angel and am free from that pain. But then? If I put myself back in that place, I think I can honestly say that I did the best I could. Me and my uterus of which medical mysteries are made. I have to be nicer to myself about this. I was in an active labor pattern for months--literally--and I effing functioned like that. Yes, I did the best I could. And while I am not trying to stroke my own ego here, I think I would be hard-pressed to find many others who could've endured that for as long as I did. But still...
And John's reaction! Argh! Since he dropped Zach and I off for the appointment that was supposed to be a routine check and ran errands with Ev, I had to explain all of this to him. And his response to all of this still infuriates me: " ARE YOU TELLING MY SON IS GOING TO BE RIDING THE SHORT BUS TO SCHOOL??????" Seriously. And then: "We'll have to get a 'Slow Children Playing' sign for the yard just for Zach." I know he was just trying to make me laugh, but still. I could've killed him, I swear. Completely unhelpful and inappropriate, John.
So anyway...
I have to wait. I have to hope all is well, or that his delays are so mild that minimal therapy will fix it all. I still hate that we are in this place.
The ball starts rolling on February 28th, when Zach sees the audiologist...
((((HUG))))
ReplyDeleteHusbands do not deal well.
You know intellectually that this is NOT YOUR FAULT. You know it. You and your doctors made the best decisions for both you & Zach.
Knowing it and feeling it are two different things. (((HUGS)))
All I can say is that in my experience (3 kids), every baby has something. Sometimes the something is more major, sometimes less, but every baby has somethign that requires tests, analysis, treatment, blah blah blah.
And every time it happens it is terrifying.
I wish you guys didn't have to go through this. I wish I could say something to make it better. I know he will get to the other side. And so will you!
(((HUGS)))
I understand your fears. But you need only go back to your Fighting for Zachary blog and re-read the many posts about the awful experience you went through and how you hung on until you couldn't anymore. I think you did the best you could, considering the circumstances. I agree with Mary A - he will make it through to the other side. After all, he has so many people rooting for him. And he has an awesome mom who will make sure he gets the best care.
ReplyDeleteThanks, ladies. I realize we'll be okay. It just sucks and I will worry myself crazy until it all pans out. And yes, Bianca, you're right. I don't think I could've lasted any longer. Thanks for the compliment, though! And Mary, yep! I remember when Ev was toddler and he got a bug bite that caused his glands to swell. Instead of trying a simple course of antibiotics first, our pediatrician tried the "You're baby probably has LEUKEMIA" first. But he didn't. And THEN they did the antibiotics and it went away in 3 days. I was about to die then.During that process, I cried everytime I looked at Evan,thinking he had this horrible disease. Gah!
ReplyDeleteSo yeah, we'll get through this. I know preemies who are almost 2 yrs. and not doing what Zach did at 5 or 6 months. We'll catch up.