– 18 lbs, 28″, 44.5″ head circumference
Noah and I are off to Vernon, BC on Monday morning……11 hour drive according to Google Maps, so that could be anywhere between 13 – 16 hours, depending on traffic and Noah. Not looking forward to it! lol. But we will be there for a week, so that’s going to be fun. We have a baby meetup with the Okanagan chapter of Noah’s birth club so I am SUPER excited about that!
I will update when we get home, since I will likely have limited internet access.
Thank you to Robyn for posting this…..I couldn’t stop reading this and I just hoped with every page that there would be a happy ending.
Warning: prepare the Kleenex and try not to wake up your kids when you go and hug them really hard.
I’ve touched on this before, so those that are regular readers may find this repetitive, but here you go.
I am so unbelievably frustrated with everything. I wake up every day wishing that I could just STOP, just throw it all away. I want to stop having to deal with all the appointments and specialists and everything else. All I want is to be able to deal with the “regular” crap, like having to baby-proof the house or worrying that he’s going to fall down or knock something over.
But no, instead I have to worry about if he’s even going to be able to go to school, have friends, RUN, do anything. I have to worry about if he’s ever going to potty train or speak or a lot of those things that people take for granted. I WISH I could be one of those people. Instead I have to be “that” person, wanting everyone to get some perspective on how awesome it is that they have a healthy baby. That person is an asshole. That person is me.
I wish I didn’t know what it was like to sit in the maternity ward without a baby in the bassinette and to see people from my prenatal class with their baby, walking the halls. I wish I didn’t know what it was like to have to travel to meet your baby in the hospital, or to see what it’s like to have your baby filled with more tubes than he has body mass. I wish I didn’t know what it was like to have that roller coaster of emotion when you finally give birth, only to have to prepare to say goodbye a few days later, and then for that to also change, to “preparing for the worst” in terms of his condition.
The shitty part is, I DO know what that’s like. I can now give people advice and say things like, “Oh, the nurses/doctors there are awesome”, or “Ask for Nurse ___, she’s the best”. I also have to deal with the circus of people coming through my house on a weekly/biweekly basis, and the appointments that need to be made and attended. It also makes me sad that one of the most common “search terms” that people type in that leads them to my blog is “hie baby”. That means that there are plenty of other people just like me.
I wish that I had a magical fairy wand, I would go around the world to every NICU and cure all the sick babies. Because there is really nothing worse, I find. You spend the 9 months happy and excited to see who your baby looks like, what it will act like…..and then BAM! something happens and your entire world is turned on it’s head. Instead you now spend each day with a sense of dread, like “is this the day he’ll have a seizure”? Admittedly, that worry has subsided a bit around here, but it’s still on my brain quite often.
Since he is at risk for seizures, fever is a worry. Luckily he hasn’t gotten one yet, but that’s yet another thing to add to the list, one that we’ll have to worry about for years, or possibly his entire life.
The pediatrician we saw at the Stollery said that sometimes babies that have seizures in the first day or two at birth never have them again. Obviously I hope that’s us, but you really don’t know until the day that they die whether that’s the case or not.
All of this is so frustrating because I wish I could stop, but I really can’t. We’re giving Noah the best possible chance at a normal life with every single appointment. I want him to be able to run and play sports with his friends, be on honor roll at school, be a fireman or a doctor or Prime Minister or whatever he wants to do. It just sucks that we have to trudge through the mud for the first few years to achieve that.
As annoying and wearing it is on us, it’s all for Noah. We want him to have the best possible opportunity at life, so we have to put on our big boy pants and go to yet another appointment or spend hours trying to get him to grab things/sit/whatever.
I hope that those people searching for information on their HIE babies can read this blog and maybe get a little bit of hope. We are an army, for the lack of a better metaphor, trying to get through the crap in hopes of a better life for our babies. We may not be a success story yet, but I am really hoping that there is one in our future. I want the same thing that everyone else does, we want our children to have a kickass life and to just be happy. For some reason we got a few mountains to climb before we get to the field of beautiful flowers (crappy metaphor #2).
They say that you are only given as much as you can handle, and I hope that’s true. I have to keep telling myself that eventually there WILL be an ending, and we have to do all that we can to make it a happy one.
I started this post a few weeks ago, but I thought I’d post it as a bit of a catch-up as to how Noah is developing.
Head control. At three months, it wasn’t a huge deal that he couldn’t hold his head up 100%, 4 months, sure, 5 months, ok we’re having issues…..but Noah is now 6 months (almost 7 months) old. We still have to support his head since he has a tendency to flop forward or back, although it’s gotten way better in the last few weeks.
Sitting. He should be sitting soon and he isn’t even close. He just flops over or sandwich-boards. That pesky head control is really inhibiting his ability to sit, I think.
Walking. As some of you may know, he has “mild hip dysplasia” that was diagnosed when he was about a month old. They suggested casts, then our OT said splints, then a month later, double diapering, then another month later, “his hips are fine”. I asked our pediatrician here, and he said to double diaper him for 4 weeks (this was about a month ago). I asked our pediatrician in Edmonton, and he said that double diapering wouldn’t do anything at this point, and that his hips are fine (that was about a week after the other appointment). When we fake-walk him, he curls his toes down, and his feet in. His OT says that his legs may stiffen up like this: \/ (vs like this: ||) as he gets older. Honestly, this breaks my heart. I don’t want him to have issues walking on top of everything else, but at this point we have no idea if his brain will even be able translate “walk” to his body. He also doesn’t kick his legs that often, although he will push against our bodies if he’s in our laps.
Hand-eye coordination. At this point, he should be a grabbing, reaching, and chewing machine. He’s not. He barely does anything with his hands, and they’re still in a fist most of the time. That means that BLW is off the table for us. So there’s yet another thing that’s off my list of things that I wanted for him. However, lately his hands have started to open up more often, and he’s starting to bring them more to center. He also likes to grab my hand and move the bottle in or out of his mouth, or move the cloth that’s under his chin away from himself. Those are good signs!
Rolling. We’ve started putting him on his tummy to sleep, so it’s almost like he’s forgotten how to roll, and now he just gets pissed off if we put him on his tummy when he’s not tired or sleeping. Along with that, he’s also apparently forgotten how to push himself up with his arms. So crawling is no where in sight, and at this point I’m honestly not even sure if he will be able to crawl at all. He doesn’t do back to front at all, but I think he’s trying…..I bathed him in the big tub for the first time yesterday and he used that opportunity to try to roll. I was scared that he was going to drown himself.
Vocalization. He’s still cooing and “ahh-ing”, but I think that it’s gotten a bit more frequent lately.
Cuteness. He’s damn cute, I’ll give him that. Even when he doesn’t go to bed on time.
Tomorrow (well, technically today) we have a meeting with Early Intervention. Our worker is doing her official assessment of his development, something she’s put off thus far in hopes that he’d catch up a bit more. But now, at almost 7 months, it’s time to see what we’re dealing with.
I’m not going to lie, I am absolutely terrified. I think that he is around the 3 – 4 month mark (almost entirely based on his neck control, but that’s gotten so much better in the last few weeks), but what do I know? He’s started grabbing things a lot more in the last few weeks, which is great. But I’m scared that she’s going to tell me something worse than what I thought. Maybe even the dreaded words of “I think he has cerebral palsy”, which is a very real and very scary possibility right now.
I know, I know, I’m lucky that he’s even alive. That is true, but at the same time, I’m so sad that I have to deal with this on a weekly basis. I don’t think anyone knows what I would do or what I would trade for Noah to be completely healthy.
When my milk came in at 5 days post-birth, I didn’t pump to relieve it because I wanted to feel even a fraction of the pain that Noah was feeling. I wanted to get a mad case of mastitis and HURT and to feel like I was at least bearing a little bit of his pain for him. I wanted my leaking breasts to be a constant reminder, my cross to bear, while preparing to say goodbye. It was the only thing that was an indication that I was a mother, since all I had at that point was a (supposedly) dying baby and the thought that I’d never bring him home.
I replay those first few days over and over again, even now, almost 7 months later. I wish that things could have been different. And I wish more than anything that I could have done something different. I would trade a scar across my belly for that healthy baby I looked forward to my entire pregnancy. I would trade mastitis, a raging infection, my soul, ANYTHING.
But alas, that’s not what happened. I healed from my vaginal birth perfectly, my breasts didn’t even hurt when my milk supply came and went (both times), and Noah, unfortunately, is “at risk”. As perfect as he looks, underneath is a sick baby.
He’s got water on the brain, his fists are usually clenched, they only occasionally come to his mouth, he can’t quite hold his head up consistently, his legs curve in, he curls his toes and feet in instead of being flat-footed or tip-toed when you stand him up, he rarely lifts his chest up with his arms, he can roll front to back, but not back to front, he more often than not will fold like a sandwich board if he tries to sit, and he still does the “over-stretch” where his legs and arms will go completely straight and he’ll freak out.
That is my baby, and the reality that I live with every day. It’s especially hard when compared to his birth club…..there are some very advanced babies in there! And as happy as I am that they are doing things, I can’t stop the pang of combination sadness/jealousy when I read about babies picking up Cheerios and putting them in their mouths, when I know that Noah won’t be able to do that for months.
It’s just very, very hard to “live in the moment” when always thinking about what he’s going to be like in a few months or years.
Will he ever be able to feed himself, go to the bathroom by himself, or even go to school? Will our reality be like the doctors said initially, that he’d live in the hospital, feeding tube, everything? One of the things they said that most stuck in my brain is, “it’s cute now, but what about when he’s 12?” and then they went on to talk about changing his diapers, carrying him up the stairs, feeding him…..will he EVER be able to do anything like that for himself? Will Caleb and I be his only friends because none of the other kids want to hang out with him because he’s “weird” and handicapped? Kids are mean, I barely had any friends and I am fairly “normal”. I can’t even imagine how hard that would be for a kid who’s mentally and/or physically handicapped.
On the other hand, it could be the flip side. Maybe Noah might take a little longer to get there, but maybe he’ll be perfectly fine in a few years. Maybe everything will be sunshine and rainbows and this “blip” in his life will just be an interesting story to tell.
Realistically though, it’ll likely be more of the former than the latter.
And that’s why tomorrow scares me. I know that he’s behind, I’m just scared of HOW MUCH.
Sometimes I wish that all I had to worry about was making my baby sleep through the night, or how he’s going to react to his needles, etc. You know, the normal stuff.
But in any case, I have to “live in the moment”, even if “the moment” is depressing. So tomorrow, we find out what we’re dealing with, or at least we’ll have a better idea.
I’m keeping my fingers crossed for semi-good news.
J (future ex-wife) & Noah:
H (best buddy for life) & Noah:
We traveled to Edmonton at the beginning of June for our first pediatrician appointment with Dr. Lyle McGonigle. I had done some Googling before we left, and found great reviews on ratemds.com, he had a 4.8/5.0! So I was very confident that we had the right guy on our team.
(At this point, it’s pretty much enough people for a hockey team!)
We left GP around 11 on June 2nd, and we finally got to Edmonton at around 7:30 (thanks to a couple of HOUR LONG feeding sessions…..GRR). We got settled into the hotel, fed the boy, ordered some pizza, and Noah finally went down at about 9:30 after not napping at all the entire day. We finally bought a playpen before we left, so he slept in that quite comfortably.
On June 3rd (appointment day), Noah woke up at around 7:30 (which I think was mostly due to us, up and packing up the room at 7). Fed. Got him out. We went downstairs for some breakfast (which wasn’t bad! Breaky sausages and hard boiled eggs……much better than the usu cereal and muffins, although they had those too). Our hotel was right off Whyte Ave (the major street in the city, for those that don’t know), and was only about 10 minutes from the pediatrician’s office (sweet)!
So we got there on time, and we waited for an hour (I had to fill out some paperwork in the meantime….they asked for Caleb and I’s education level, which I think is kind of odd but whatever lol. They asked for the list of “agencies and medical professions involved in the care of this child”, and I had a laugh because I had to write down the sides of the paper under the main column since there’s quite the list, haha) until a nurse took us into intake. We had to tell her the whole long list of all of his birth issues, treatments, etc since his birth. It was kind of annoying because Caleb kept interrupting me….I had gone through the spiel a trillion other times, I have it down by now! Then she weighed and measured him (17 lbs 8 oz, 26″ long, 43.5 cm head circ) before leaving us back in our exam room.
Finally we saw the doctor and he called Noah a “frickin’ miracle”, hahaha (first time I haven’t hated when someone called him a miracle, lol!). He said that he was thriving, and most exciting of all, WE GOT THE GO-AHEAD FOR SOLIDS!!! 😀 I was super excited because I was told that we had to wait until his head control was down (so I wasn’t expecting to start until at least 7 months), and when I told him that our occupational therapist had told us to wait for head control, he said “bullshit, start him now!”. Love him. He also said that there are no issues with Noah’s hips 😀 . But he said that as he gets bigger, his legs may tighten up (he gestured them into a froggy position, like they were for his first month or so). I thought that was kind of weird, because he had already been there and we had loosened them up…..I probably should have voiced my confusion aloud, but alas I did not. Oh well. And unfortunately, cerebral palsy is a possibility…..we already knew that, but hearing it aloud made me sad. Sigh. We can only hope for the best at this point.
So then we were sent on our way. We have another appt in September, but until then, yet again the ever-present “wait and see”.
We left the city at around 11, and got home to SNOW (BOO) at shortly after 6.
Noah was ok in the car, but he barely napped and I’m sure the car seat was super uncomfortable for him, since it only has a thin piece of styrofoam for cushioning. We’ll be getting a big 3-in-1 car seat in time for our next big trip in September.
So about 15.5 hours of driving/travel + about $200 we don’t have (plus gas, but that’s on a gas card) = a total of 1 hour of waiting, half an hour of intake, and about 20 minutes of doctor. Sigh, the things we do for our babies!
Here’s some random pictures of the trip!
All I have to say about this is: STOP GROWING.
Here’s how much he’s grown!
…..and now 6 pictures for “6 months old”!
– He is 17 lbs 15 oz, and 24″ long…..yeah, he “shrunk” (haha). I’m working on buying a tape measure since the one I had bit the dust, and the nurse’s tape measure is obviously not right. His head circumference is 44″.
– We had an appointment with his pediatrician in Edmonton, and we got the go-ahead for solids so that’s a big “first” for this month! 🙂
– his Daddy
– looking at things
– staying up late
– going to bed at a regular time
– his stroller
– the Snugli
– hot weather
– Mom getting anything accomplished
– being left in a room by himself
– tummy time because he thinks we’re trying to make him sleep
– his Bumbo, because it’s not tall enough so his head flops back. We’re working on it.
Things to work on:
– As usual, head control and hand-eye coordination, although he is getting A LOT better lately!!