The highlight of which was taking Ja.son to the ortho-whateveryoucallhim-ist to get his helmet. He cried so much he threw up. Ja.son, not the ortho dude.
Fun stuff.
Now we have a helmet that makes him sweat like a pig, makes me cry like a baby when I see him in it, and smells like puke.
We are starting to phase him into full time wear. Basically, we start him on wearing the helmet for one hour increments. One hour on, one hour off. That goes on for a few days. Day three the time on is increased to four hours on, one off, until day 5 is up to 23 hours on with one off.
You read that right. 23 hours a day will be in this helmet.
1 hour is out of the helmet.
For 3-6 months.
It still upsets me to think about him in it. Partly, I suppose, because it is a daily reminder of all of the NICU stuff. Partly because it is something that everyone SEEs. I can't cover this one up with smiles and talk about sunshine and roses. Partly because it is a constant reminder of how I failed them. Yeah, yeah, I did what I could and all that crap. Still it hurts.
He hates it and cries the entire time it is on.
I hate it and cry the entire time it is on. (I sound like such a baby. I need to just put on my big girl panties and get a grip already.)
This is going to take some MAJOR adjustment on both of our parts.
I was going to take a picture of my sweet little man. I couldn't bring myself to do it.
I suck, I know.
What do you know. It turned into a whiny post anyway.
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I am working on decorating the ugly thing. Anyone have any cute stickers they wouldn't mind sharing?
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If you're interested in seeing the boys attempt at eating stage 3 foods, here you go. It makes me laugh, but I understand that I may be a little biased.
***Edited to add: To answer the questions about the NICU, here is a brief synapsis - The boys were transferred from the nice area NICU to a big, evil NICU in a major city about an hour (ish) away from us. They both had developed hydro.ceph.alus, and it was clear that something needed to be done. Our county, however, did not have a neonatal surgeon available. So, on the weekend after Thanksgiving, we were shipped to the other hospital.
Getting there each day was difficult. We traveled each day. Often it took us closer to two hours to get there due to traffic, and about an hour and a half to get back, which we did each day because hubby was still going to work. Due to a number of reasons, we were not able to be at the hospital for as long as I would have liked.
Anyway, the hydro caused the boys' heads to swell. The NICU nurses at the evil hospital wouldn't turn their heads because they thought it would be "uncomfortable" for them if they layed on the back of their heads. They would only lay them side to side. Then the boys had the surgeries to place their shunts, and the nurses wouldn't put them on the back of their heads because they had the shunts, and "it had to hurt to lay on the back of their heads". (this place was supposed to have done thousands of this type of surgery, so the nurses should have known some very standard things about the care of them. I felt more often than not that the nurses were afraid of the shunts and what to do with them.)
I tried desperately to get people there to listen to me about the placement/shaping of their heads among other things. Long story short, our relationship was strained by the time we were sent back to the nice hospital where the boys were born.
Anyway, Ja.son's head shape is directly related to the care he received while at the evil hospital. Sh.awn had issues with his head initially, too, but with all of the extra stuff he's been through, his head has rounded out more.
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11 comments:
My son got his first pair of hearing aids at 3 months. I was very very sad to see them on his tiny head and the way people looked and stared (not made easier by the fact he was still all but bald at 2) We had months of putting them on endless times a day and searches for them (he would chuck them - longest search several hours)
Over time though my attitude changed. While making him different (and being a PITA) they gave/give him such benefits in the long term. These inventions of technology give our kids chances they never would have had in previous generations.
At 3 he asks for his "ears" all the time, he turns them on and off and takes good care of them, lying them beside him when he takes a nap. He looks "strange" to me now without his (new, bright blue) aids
I know I hated the looks and comments but looking back on it, it seems so trivial when compared to the benefits. Not trying to deny your feelings, just perhaps give you a perspective from the other side.
Hope the months fly for you.
My daughter was not a fan of stage three foods at all! I remember trying everything under the sun too. LOL!
That is HILARIOUS !!!! Jason is such a good sport. You can tell it's gagging him and yet he keeps opening up to let you shovel it in.
I think he likes his tongue more than the pasta :) ha ha
I'm sorry about the helmet. I'm sure that it will become a regular accessory soon.
I wish I had some cool stickers to send. You could get some jokes, like bumper stickers would be funny. Political funny ones. Just something that makes you smile amidst all of the reminders.
Head up ! It will be over before you know it. (at least we can tell ourselves this...my theme daily is, this too shall pass, it gets me get through the bad days)
Maybe you could explain, or direct some of us to find in your previous posts, exactly what the NICU staff did. Please excuse my ignorance.
Much love. And I know you don't want to hear this but it is only 3-6 months. Please post a pic. It can't be as bad as you make it sound.
Thinking of you.
Jason does not look happy with the stage 3 food!
How adorable.
I know that this entire helmet thing is just bringing up things you want to forget, but as you know- it is only for a short period of time, and will help him in the long run. I know it's heart breaking... but so many things that will happen to our kids will break our heart: their first skinned kneww, their first heartbreak. It will kill us inside, but will overall be benefical for them. Sending you hugs!
It's a no-bwaino ..... Stacie and Isaacs boys are the cutest in all of the land. That was so funny .... want me to post you some new bibs?! Heh heh.
My heart broke, reading about Jason having to wear the helmet. I'm going to send some SERIOUSLY tough skull and crossbone stickers for it ... make people think twice about staring.
I love your accent!!! XOXOX
Honey.. whine away.
Honestly, it probably bothers you way more than anyone else.
I sort of think the kids in the helmets are cute..
Of course, I wouldn't want to have to deal with it.. 23 hours.. SO ANNOYING.
Hell, Robbie got the strap for his apnea monitor on under his clothes 24 hours a day and I hate it.
I'm glad to HAVE IT, of course, but it's bulky and annoying and the wires are in the way etc etc etc.
Big hugs to you!!
We were also the victims of a NICU mistake. In our case, they lost a test result that showed our daughter had a brain hemmorage which was caused by someone turning the setting of her oxygen up too high, and then they lied to us to try to cover it up. My daughter is four years old now and has lingering issues, who knows if it's due to prematurity in general or the failure to immediately treat and monitor the IVH. I understand the anger you have. My husband and I are still angry and sad, although it's less now than it was at the time. I really wish there were a way for medical professionals to appologise without opening themselves up for malpractice suits. For us, the sorrow of the mistake was made worse by the fact that no one would acknowledge it.
It's okay and totally normal to cry about it. It's not fair and it's not what you pictured for your child. It's normal to mourn that.
I hope the next 3 - 6 months fly by for you!
Katy
I am the anonymous who asked what the NICU had done. Thanks for the explanation.
Evil hospital indeed. And incompetent nurses. I understand your outrage.
But your boys are beautiful none-the-less.
Not looking forward to stage 3 foods with my twin boys either.
:)
Stacie,
Just letting you know that I'm thinking of you. I know that the helmet brings up memories you'd just as soon forget.
But - I think the stickers & decoration are a great idea.
And - you did NOT fail your boys. Your body did everything it could - and you were (and are!) their very best advocate. It's the system that fails and it sucks that you have to fight so hard to get proper care from "professionals."
omg how cute is that video????? LOL!!!!!
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