Tuesday, August 2, 2011

They say...Surgery one

Surgery One.
This is a post I posted on my private family blog about a week after Rykers first surgery. As I write this post, Ryker is 11 months old. This memory seems so long ago. Bitter sweet I guess. Okay, so just read it and then I'll recap.

Ryker had his first surgery about a week and a half ago. On one hand it is super exciting to start the process that will help our little man become more of a stud then he already is, both in physical appearance as well as function. On the other hand, it pretty much sucks IMMENSELY. This first procedure is to put a retainer like prosthesis in his mouth to help guide his palate where to grow, plus make it WAY easier to eat. Good stuff, right? Well, what they don't tell you is that the palate is semi-permanently held in with brackets and pins attached to his mouth and gum line. Ouch...and he has to relearn how to eat, which means he just won't for a while, and when he does it will probably hurt. Super. Also a small chain like thing is attached from one side of his gum line to the other to start bringing the overall gum line, lip, and palate to where it is supposed to be. Every two weeks they tighten it. They say it doesn't hurt. They say. They say a lot of things that make me want to punch them in the face. Anyway, my life is beyond nuts right now, but I know it will get better. And just when I can't deal anymore, I get tossed a bone. A good night of sleep (anything over 4 hours) a dinner from a neighbor, or a Great Grandma coming to save the day. So really, we are doing okay. And okay is okay for now. Ryker really is a trooper, its me that's a mess, and this was supposed to be the "no big deal" surgery.....They say.....;)

Dr. Morales, the surgeon. I have a love-hate relationship with this man.
Now this man, I got nothing but love for. Allan has been absolutely amazing. I would break into a million little pieces without him.

You can't see much but swollen lips and the chain.

This is a week after his surgery. the little ball thing is to help shape his nose. And though you may not see it, the gap is starting to close, ever so slightly. Okay, baby boy, hold on tight, here we go....

Okay, welcome back to the present. So here are a few things I want to say about my experience. The good nitty-gritty stuff that I know you are all dying for. Hopefully it will be useful for you. There are a few things I wish I would have been a bit better prepared for, one of them being that the day of your surgery will constantly be changing.

The day before the big event. You will be told a time that you can no longer feed your darling child in preparation for his surgery. Empty stomachs = no puke. No puke = a breathing baby. We want breathing babies.
You will be told a time to check in at the hospital, and a surgery time. You will plan for what you have been told and act accordingly.
The fun part. And this goes for all the surgeries.
You will get at lease one call "bumping" you" to a later surgery time for any and all kinds of reasons. But no, no, you can not feed your baby in the meantime. You may get a few of these calls. You may have even made it to the hospital only to find that you will have another 3 hour wait. With your STARVING child to keep entertained. If you are a lucky one who gets to have a surgery day run as planned, I am thrilled for you. Cherish that you get to miss out on all this extra grief. And say a little prayer for the rest of us to not pull our faces off with stress and frustration.
One little last tip on that, please, please, please, follow the directions you are given about what and when to feed your baby post surgery. Even though it is likely things will change. I had a friend and fellow Step by Step follower get "bumped" almost 5 hours for her little mans first surgery all because another family didn't follow directions with feeding, and fed their baby long after they weren't supposed to. Don't be "that" person who makes others suffer because you didn't follow directions.

As for the surgery. They will tell you it is really just a "procedure," not a surgery. Nope, in my book anytime you get put under for adding, taking out or adjusting body parts, that qualifies as a surgery. And all you Mamas, the first one is rough. It's almost impossible to hand over your child at the double doors of the surgery room to someone you have never met before (the sleep doc) without at least tearing up. Knowing it will be super hard on all of you, but for your child's own good, doesn't really soften the blow. But this one is only about 30 minutes. You can make it! Bring an episode of "The Office" to keep you busy in the waiting room.
When they are done, your little stud/princess will have a slightly swollen face with some brand new hardware. The "chain" is almost more like a flat plastic figure 8 band. This is what they will tighten about every two weeks to start everything moving to where it should be. Some have better results then others. But it will definitely point you in the right direction.
Also, at this surgery they will install a retainer-like part on the roof of the mouth. (for cleft palate only) This may have a little ball pushing out the nose for shape.
A side note about the prosthetic palate.
A few days before your first surgery you will meet with a pediatric dentist to get a mold of your babys mouth. This is who will make the actual prosthesis. (Again, only for cleft palate) This is the very first surgical step you will take on you cleft journey. Really, it is no big deal. They have a wad of fancy foam they shove in his mouth for about ten seconds. That's it. But you know what? It was surprisingly, embarrassingly hard for me. They had me hold Ryker on my lap. The doctor explained that I would have to pin him down and hold his head still for 10 seconds while he shoved the foam in his mouth and it set. He informed me that it wouldn't hurt, but Ryker sure wouldn't like it. The doctor shoved it in his mouth and I think I made it through 3 seconds of Rykers strangled, muffled cries, all while pinning his flailing body down before I burst into tears. I surprised my husband. I surprised the doctor, and most of all I surprised myself. It really did take me a few minutes to calm down. It rocked me a bit. This was so minor, I was confused about why I lost it the way I did. After we left I thought about it.
For me I had known about Ryker's cleft from midway through my pregnancy. I had a lot of time to absorb the situation and prepare for everything it was going to mean for our family. But that first appointment was when it became extremely, painfully real for me. Wow, I am tearing up right now just thinking about it. I knew that we had actually taken the first step on our journey to getting Ryker's cleft fixed, and this was just one of many not so pleasant experiences to come.
So my advice?
Make your husband, or partner, or ANYBODY else hold your baby for this one. Look away, plug your ears and count to ten. Then it will be over. And you can be the one who rescues your muffin from the mean 'ol' dentist. Just kidding! ;)Do what you feel is best.

Okay, back to the surgery part. So the hardest part about the surgery for us was that Ryker's whole mouth was not only hurting, but it had completely changed, meaning that he would have to relearn how to eat. This is where the on purpose, broken nipples came in handy. We could at least squirt milk into his mouth, but it was great to have a complete palate. He started to eat much better pretty quickly. On Ryker, the chain didn't bring the gum line together too well, partly because his cleft was pretty wide, and partly because he kept pushing his tongue through the gap. But it did help a little, and after Ryker got used to the new palate in his mouth, it was great for all of us!
Okay, last tip. Because of the chain, and how easy it would be for an infant to accidentally rip it out, they send you home from the hospital with arm restraints and strict instruction to keep your baby in them at all times until his next surgery in 4-6 weeks. Yikes!
Well, what they give you is glorified tolite paper tubes......with ducks on them. That brings me to my next post. Honey cuffs, a brilliant alternative.

1 comment:

Unknown said...

Thank you so much for sharing Ryker's story. Our son is due September 13th and at our 20 week ultrasound in May, we found out he "may" have a cleft lip. After further scans, his diagnosis is a unilateral cleft lip and palate. This blog is exactly what we've been looking for to navigate our way through the months leading up to his arrival. Regarding this specific post, how old was Ryker when he had the surgery to put in the palate/nostril shaper?