Lip Adhesion Post-op

Wyatt's lip adhesion was two weeks ago today! He is No No free and happy as can be.

He had a post-op appointment at the cleft clinic today. The doctor said he was healing great. His lip repair will be schedule in two months. More than likely he will also have tubes put in at that time. The surgeon explained how he will do the lip repair and what the scar will look like. There will of course be a scar. Dr. Lacey said chicks dig scars. Mike joked that Wyatt could just say he got it in a fight and the doctor suggested he say it was from a hockey injury. ;)

The orthodontist Wyatt has been seeing also wanted to check in on him and take some pictures. She will follow his progress but Wyatt won't need to see her again until he is 7 or 9 years old and will have braces for the first time.

This is Wyatt the day before the lip adhesion:



 

 

 

Here he is the day after the lip adhesion surgery:



 

 

 

Two weeks post-op:

 

Wyatt the Warrior

Wyatt's first surgery couldn't have gone better!

Surgery was the morning of Wednesday, February 6th at the University of Minnesota Amplatz Children's Hospital. Check in was at 5:30 a.m. and after getting registered we headed straight to pre-op where we would spend the next two hours until surgery. The nurses collected basic information and we got Wyatt changed into the pj's provided by the hospital.

 

The time in pre-op was spent trying to keep Wyatt distracted since his last feeding was at 3 a.m. He couldn't have anything 4 hours before surgery. This wasn't as long as I thought it would be and he did much better with this than we thought he would. He did get pretty cranky that last hour but we tried our best to distract him with toys, music, and walking around.

 

 

 

 

There was a Child Life Specialist who checked in on us regularly and did a lot to help us all get through this time. She brought a pacifier, toys and music. Whatever we thought might help. She even held him for a while and he fell asleep in her arms. She ended up carrying him as far as they would let us go toward the operating room. She said he was such a sweet heart and it made her day.

We had lots of visitors in the pre-op room. The surgeon and anesthesiologist came in to explain everything. Dr. Lacey, the plastic surgeon, initialed Wyatt's cheek - That is the blue marker you see. Different members of the team that would be in the operating room came by to meet us. Everyone told us they were going to take good care of Wyatt.

Soon it was time to go. A little before 7:30 we headed toward the operating room. We walked Wyatt as far as we could and kissed him goodbye in what they call the "kissing corner." We watched them carry him away.

As I watched Wyatt being carried into surgery the The Child Life Specialist suggested we take a moment in a consultation room near the area where we would wait. I could hear Wyatt crying as they carried him down the hall. I was doing okay up to this point and didn't understand why we would need to go to a consultation room until I looked at Michael. He was crying... and then I was crying.

When we were ready we checked in at the waiting area. It was really nice and there were monitors that provided updates on where Wyatt was. Wyatt was Lo..zW.

Surgery took a little over an hour and a half and he was moved to recovery at 9:11 a.m. We anxiously waited for them to bring us back to see him.

The worst part for Michael was seeing Wyatt being taken into surgery. The worst part for me was seeing him in the recovery room.

There were wires and tubes all over him. His eyes were puffy and his lips were swollen. He had iodine and blood around his lips. He was a little out of it from the anesthesia and he was in pain. He cried and it was the saddest cry I have ever heard. His voice was horse from being intibated. They ended up giving him a shot of morphine a little after we arrived and that seemed to help him. We tried giving him Pedialyte but he only took about a half an oz. Then he slept. I held him in recovery for an hour and a half and then we were moved to our room in the hospital.

When we got to our room Wyatt was already doing better. You could see the grogginess fading and hints of his personality returning.

As the day went on he did better and better. He took a lot of naps.

At this point he was just on Tylenol. We tried Pedialyte again and he took about another oz. A little later we tried his milk and he took about 3 oz which was really good. From then on he was back to his old self as far as feeding went. He had kicked out his IV from his ankle but didn't need it anymore because he was doing so well. They monitored him closely to make sure his kidneys started functioning again.

By Thursday morning he was all smiles. He had tape on his mouth after surgery but they removed it before we went home. He has to wear his No No's (arm restraints so he doesn't put his hands near his mouth) for the next couple of weeks but so far he doesn't seem to mind them.

Wyatt did amazing and we are so happy with how everything went.

 

 

 

We are now home and everyone is doing great. Bella was very concerned about her little brother and glad we are all together again.

 

 

We would like to thank all of our friends and family for your thoughts and prayers. 

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.