Brave in War

Less than a week now. Just days until Wyatt's first surgery.

My stomach feels sick at the thought of it. These last days leading up to surgery have been harder than I thought. I knew this first surgery would be here before we knew it but I didn't realize how hard it would be when the time actually came. The reality of what lies ahead is sinking in. I am sad he has to go through this and sad he has to change at all. He is perfection and we love him just the way he is.

I know there are others out there who are facing more unimaginable journeys and for them I am sorry. The reality is we are so very lucky. This surgery is routine and the risk is small. All of the surgeries Wyatt will have are common. The doctor tells us this will be the easiest. Still. There is risk involved.

There is a sense of vulnerability and helplessness I have never felt before. I am going to have to hand over my precious baby to strangers. He will be taken away and put to sleep and he will wake up in pain. I dread all of this. Not being able to feed him before surgery. Waiting. Not being able to comfort him after.

We didn't pay close attention to the meaning of Wyatt's name when we picked it but I don't think it is a coincidence it means brave in war. Our little guy will have to be brave as he faces his first surgery, future surgeries, and other issues related to his cleft. We all will have to be. I will have to be.

Welcome to Holland

I was doing some cleft research online today and came across this story. It was written by the mom of a special needs kiddo.

 

WELCOME TO HOLLAND

 

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Written by Emily Perl Kingsley (in 1987)

Home

This summer a song called Home came out by Phillip Phillips. I first heard it as the theme song for the women's gymnastics team during the summer Olympics. Since then it has been everywhere including some insurance commercial I think. Anyway, I know it is popular and may be a bit cheesy but I really like this song. While I was pregnant with Wyatt it became pretty close to my heart. It was an exciting time but also a scary and uncertain time. Here are the lyrics:

Hold on, to me as we go
As we roll down this unfamiliar road
And although this wave is stringing us along
Just know you’re not alone
Cause I’m going to make this place your home

Settle down, it'll all be clear
Don't pay no mind to the demons
They fill you with fear
The trouble it might drag you down
If you get lost, you can always be found

Just know you’re not alone
Cause I’m going to make this place your home

Settle down, it'll all be clear
Don't pay no mind to the demons
They fill you with fear
The trouble it might drag you down
If you get lost, you can always be found

Just know you’re not alone
Cause I’m going to make this place your home

Welcome home Wyatt.

Getting Ready for Surgery #1

Today Wyatt had an appointment at the cleft clinic. We met with the team coordinator, surgeon and the orthodontist. Wyatt's scheduled for surgery on February 6th. Part of what they wanted to do today was talk about if the orthodontist could still make progress closing the gap in his dental ridge. If the orthodontist thought she could still make progress in closing the gap we would move out his surgery. There hasn't been any progress in closing the gap since December so they have decided to go ahead with the surgery as planned on February 6th.

The lip adhesion in February will basically just close the lip. They probably won't do anything with the dental ridge or palate at this time. The surgeon said doing a lip adhesion (basically just stitching the lip together for now) will make for better results when he does the lip repair at 6 months. There will be less tension and better results with scarring and evening out the lip.

Here is some more info I found online about lip adhesions:



Lip adhesion is performed within the first few days and weeks of life as a preliminary procedure, with definitive cleft repair delayed to a later date. The purpose of lip adhesion is to convert a wide complete cleft to an incomplete cleft and allow tissue growth during the delay phase and to provide additional reconstructive tissue. In addition, the lip adhesion is thought to act as an orthodontic appliance that improves the alignment of the maxillary arches and narrows the alveolar defect.

Lip adhesion is performed by creating medially and laterally based flaps (typically rectangular) from the margin of the cleft and suturing them together to create a bridge over the cleft.

Wyatt's lip adhesion will take about 45 minutes and he will have to stay in the hospital overnight. They just like to keep an eye on these little babies because sometimes with the anesthesia they can stop breathing. We won't have to do anything special with feeding but he will have to wear No No's (arm restraints that look like a cast for each arm) for 10 days so he doesn't hurt anything by sticking his fingers in his mouth.

That is all I know for now! After 2 hours at the clinic today Wyatt and I were pretty tired.

Feeding: How it's still working out

I saw Anna (our Speech/Lang. Pathologist) while we were at the orthodontist last week and mentioned that Wyatt could feed himself with the Haberman bottle. We don't have to squeeze it at all and he downs it in 10 minutes. She said we could try different bottles and Wyatt might even be able to use a "regular" bottle. He still can't suck but with a bottle with a faster flow, him making compressions and maybe a little help from us with a bottle we can squeeze he may be able to do it.

Here is what we have been up to this week... trying different bottles and bottle modifications.

Bottles from left to right: MeadJohnson, MeadJohnson bottle w/ Dr. Browns nipple, Haberman, Avent

Dr. Browns Bottle

So far it looks like the Dr. Browns nipple on the MeadJohnson bottle is the winner. We already have a ton of MeadJohnson's bottles (they are super cheap and what we started out using) and you can buy Dr. Browns bottles/nipples at Target. Hooray. I really hope this works. If I can get the nipple to flow faster by modifying it or buy a faster flow he may be able to use the whole Dr. Browns bottle. From what I have read online a lot of clefties have had great success with this bottle.

Another nice thing I found out from the surgeon today is he will let Wyatt have his bottles after surgery. No syringe feeding for this guy. He also won't have to transition to a cup/sippy cup before his palate surgery like some doctors require. I am so glad because I want things to be as normal as possible for him. The poor thing has to go through enough as it is. 

Wyatt's Big Smile

I sure am going to miss this wide smile.

Always more to learn

When we first learned Wyatt has a cleft lip and palate and started learning about what it was and what treatment might look like we were overwhelmed by all the information. The further along we get the more it seems like this isn't going to change. The treatment of a cleft lip and palate is very involved and there is a lot to learn every step of the way. I often have to remind myself to take it one step at a time.

It is hard not to get ahead of ourselves. Luckily, everyone on the cleft team we are working with has told us from the beginning they will only give us the information we need at any given appointment or stage. As we learn more and ask more questions they tell us more. At first I thought I needed to become an expert. Not only is that impossible but it would be way too overwhelming. For me, as a parent, this has been a hard thing to accept. It is such a weird place to be, wanting to know everything to best help your child but not being able to handle it all at one time.

The internet isn't always that helpful either, not just because it can be scary and overwhelming, but because every situation is so different. It depends on the type of cleft and different doctors/teams have different methods of treatment. Every baby is different too. What bottle, taping method, etc. that works for one child might not work for another. Everything I read on the internet I have to take with a grain of salt because it may not be exactly the same for us. One thing I am really grateful to the internet for is the online cleft community. It is really easy to feel alone in this sometimes and babycenter.com, Facebook and blogs have made it really easy to connect with others going through the same thing.

So, here we are. One thing at a time. A cleft lip and palate at first glance seems like a pretty easy fix. You just sew it up right? Wrong. There are so many stages and they occur over such a long period of time. I recently learned that there are still things they can't fix until Wyatt is 21. TWENTY ONE YEARS OLD!

I started asking the orthodontist more questions and here is what I learned. Wyatt will see the orthodontist until he is done with his first surgery. He will start seeing her again for braces when he is 7 years old. At this time he will have braces for about a year. He will have braces again at 13 for another 2 years.

I asked if she had any idea how his teeth would come in etc. Based on the type of cleft he has and what I have read online I anticipated they wouldn't come in straight and he would be missing one or more teeth. With the different kinds of clefts some children have extra teeth or are missing teeth. She said Wyatt would probably be missing a tooth. I asked when/how they fix this and she said when he stopped growing at 21 years old they would put in an implant. 21 years old! She said they will put something there in the meantime so you won't be able to tell but they don't put the permanent implant in until he stops growing at 21. Wow.

I also learned after this first year we will have annual meeting with the cleft team. Everyone will be at the table including the Speech-Lang. Pathologist, Orthodontist, Surgeon, etc.