When the doc says to sleep on back...do it...

[micro-cooper]

Hi folks. I wanted to share our mistakes to maybe help folks make a better decision than we did.

My 9 month old son had CVR for metopic about 2 weeks ago. The doctor told us that he needs to sleep on his back for 6 weeks. Of course it seemed like an insurmountable task. When he came home we tried to have him sleep with us, but he woke up about every hour screaming because we wouldn't let him roll over. Then we tried to elevate his crib and surround him with rolled towels and blankets, but he got up over those. Finally we figured if we padded his crib with pillows then at least he wouldn't be putting much pressure on his head.

Yesterday we noticed something poking out at his temple. We took him to the doctor and sure enough one of the bones had pushed up and out of place from him sleeping on the side of his head. The feeling of pure failure is indescribable.

When we brought him home from the hospital we thought a swing would work, but he was too big for it so we moved onto the other tries listed above. Last night we went and bought a bigger swing, and after he screamed for 2 hours from being strapped in by the 5 point harness, he passed out and slept all night.

We have an amazing doctor - Dr. David Matthews - and he did beautiful work but of course there are some fragile parts while it heals. I just wanted to pass this on so that people know that though it seems like you can figure out a way around this sleeping on their back thing, please don't. It is so hard to watch your baby struggle - but so much worse when you mess up the reconstruction.

[Janet]

Wow, I'm sorry that this happen to your son...so is your surgeon going to fix it, or what's happening?
My daughter had plates/screws and no sleeping restrictions at all.

[Nezzy]

I think it depends on the surgical method. Most babies can sleep however they want after surgery with no risk. I am so sorry that happened to you. Thank goodness your new swing seems to be working. You know...also...please don't blame yourself. The bone sticking out might not even be from his sleeping position. It might have happened anyway. I really don't think you should blame yourself at all.

[*Jessica*]

Yes, don't blame yourself. Things happen! :heartbeat I had the same question as Janet, are they going to do another surgery? And to add to what Heather said about surgical techniques, she is right, every surgeon is different and they have different instructions for after surgery. So you are right, it is a good idea to follow your surgeons instructions. Hugs momma! Thank you for that important reminder.:hugg

[AJ's Mommy]

Oh don't blame yourself please. Poor thing though. We were told he could lay however he wanted and he would be fine. He had an open procedure.
Im so sorry that happened!

[angeleka]

I agree with the others. Don't blame yourself. And I do have to wonder if it is something that may have happened any way. We were never instructed to keep our son on his back, only to keep him elevated. Every surgeon and technique is different, so post op instructions vary.
I am also curious about the questions the others have asked.
{{HUGS}}

[fitmomof2ae]

I'm sorry. Is he going to need surgery to repair the bone?

I hope tonight is better for you.

[InfinityRogue]

I'm so sorry that happened to you! We were told to keep our daughter on her back for 2 months. It's been 5 weeks so far and I have barely slept, trying to make sure she stays on her back. It's exhausting! Are they going to fix it with another surgery? I hope you guys found a solution that works for you.

[jjmc123]

Wow, that stinks. Will the surgeon be able to fix it? What is the plan of action?

[micro-cooper]

Hey folks...sorry...been a busy week over here. The doc said that it'll be 2 more weeks until they know what can be done. Hopefully a band will be able to push it back into place, but that will depend if the other side of his head can provide the leverage needed. He seemed pretty confident about that method, but didn't rule out another surgery. *sigh*

It does depend on the type of surgery. For my son, they used bone on the temples to help support the outside of the orbital bone. They were secured with disolvable plates and screws, but because they were basically on the edge of the repair, they were only being held to the other plates above and to the side. It was a unique pressure of him laying on his side pushing down (being on his ear), and up (his cheek pushing upward). I don't think it would happen to everyone, but I wanted folks to know what could happen - because we didn't think it could.

The doctor told us to keep him on his back, because he knew that those side bones had a chance of moving, but I wish he had been more specific about what could happen. It sounded like a blanket statement just being cautious, I really didn't know that he was specifically basing that on my son's bone positioning.

We have had a screaming baby for 2-3 hours every night in the swing, but we are pushing through. He does eventually pass out and get about 6 hours of sleep. We are getting past blaming ourselves...we thought we were doing the best for him at the time by helping him sleep. What is done is done, we now have to wait a couple of weeks to see how it can be fixed.

Thanks for the kind comments! The good news is that we get about 12 hours of very happy baby during the day, so it appears we aren't warping him too badly. We're just warping ourselves, I guess. :)

[micro-cooper]

Oh...and a side note...I highly recommend trying to get your child's CT scans from the hospital if you can. We went to medical records and they sent us down to radiology, and they gave us a DVD of his before and after scans. It is SOOO helpful in understanding what the surgeon did. I kind of wish I had paid a bit more attention to how this temples were configured, but we're doing a lot of "we wish we had" over here. You can at least ask...if only for the amazement factor alone.

[gijohnnysgal]

I am sorry, mama!

Our LO has been on his back for the past 7 weeks... We have kept him sleeping in the car seat, per our surgeon's instruction, and it's been going well! He sleeps a solid 10+ hours a night and we do too since we aren't worrying about him rolling around! I was skeptical at first, but I really think the car seat (placed inside the pack and play) has been great for Henry!