Wednesday, December 21, 2011

And the Journey Continues On...

Tessa Update

The Past: As many of you know, we have a precious 4 years 8 month old that God has blessed us with. Tessa was born with a severe bilateral cleft lip and palate...we chose a very qualified plastic surgeon who was part of the Long Beach Memorial Miller's Children Hospital Cleft Team. Great! We have been very pleased with the team as well as the care that we have been given.
At 6 months Tessa received her first surgery, the dropping down of her cute little pre-maxilla ball and the bringing together of her lip. At 9 months, her second surgery closed up one side that had come apart. At 12 months, her third surgery completed her upper lip. At 18 months, a palate closure was done. This surgery failed. The first in Dr. Well's history. So, ever since then, Tessa has had a pretty large "fistula" in her mouth (which she has done remarkably well with I might add!) It affects her air pressure, a discomfort every now and again with food getting stuck up there (also quite humorous when it finally comes out her nose!), and a bit of her speech. However, her speech is pretty good...she gets along fine with those she knows...IF they are paying attention. :) So, to say the least, with Tessa in preschool, heading to kindergarten next year, we have felt like something should be done to help improve her speech.
I'm not sure how much I should go in depth here, but if you want to, you can skim. :) This summer, in Alaska and even around here, we had some run-ins where my "mama bear" wanted to attack! You know, playgrounds and kids...need I say more? I don't even really know if Tessa was affected by any of the words these kids spoke or if she paid attention to the whispers behind her back, but I sure did. And you know what? It lit a fire under me to figure out the next steps in her journey. What must we do to get Tessa's speech like that of other kids her age? I sure don't want her self esteem to go down any earlier than it has to. I want to protect my little girl...she's got a road ahead of her and I'm not going to be able to protect her forever. With all this said...I am confident that God has given her the tools that she needs to live life with all the challenges a cleft lip and palate bring. She's a strong girl and God has a plan for her. We are all confident in that and it will be very exciting when she figures that out too! :)

This past September I was shopping at the grocery store with Tessa and Molly when a woman comes up to me and says, "my 21 year old niece just had her final air brushing done and looks amazing!" She said this in such a way that I should know exactly what she meant. I know I hide it pretty well MOST of the time when I should probably know what people mean when they say something to me, but I don't think I did this time. :) She continued on..."she also had a cleft lip and the air brushing is the final surgery to finish it off." Ohhhhh. "Who's her doctor?" "He's with Long Beach Memorial...we LOVE him...I can't think of his name." "Is it Dr. Wells?" "Oh yes, that's it, Dr. Wells, what amazing work he does! We've been so pleased with him!"

God put that woman in my path for so many reasons. First, we had an appointment with him the next day and it's always nice to have confidence in your plastic surgeon. Second, she mentioned that her niece was 21 years old having her FINAL surgery. I kind of lost that perspective...we are in a marathon. This is NO sprint. Things are not done fast or quickly. Endurance is key here. Patience is key. Pressing on is key. Pain is key. Oh God, give us the strength to get through all this!

Our meeting with Dr. Wells was an interesting one. He walks in and looks in rough shape. He's an older man, perhaps close to retirement (has never mentioned it though), he just looked rough. He had recently gotten something removed, a gull bladder maybe? And he had a couple of band-aids on his balding head (topical ointment for skin cancer). "Hmmmm, this guy isn't going to be running our marathon with us much longer", I thought. Yes, he has another guy in his practice that many are pleased with, but we've never met him.
Dr. Wells is conservative. He wants to wait until Tessa is 6-7 to finish up closing up her palate. He doesn't want to risk not having enough tissue there to work with. In the mean time, he recommended that she is fitted for a speech bulb prothesis.
A what??? I guess they aren't really used much these days, and mostly only with older patients. BIG RED FLAG. I am not going to put Tessa through THAT! Often times the gag reflux takes a good week to get used to wearing this. Why the speech bulb? Tessa has a short soft palate and this is what is mostly affecting her speech, it's not just the fistulas (holes) in her palate. This soft palate needs to be lengthened for anything dramatic to happen to her speech. I kind of felt like he was stumped. He had talked all of his other plastic surgeon colleagues and, I quote straight from Dr. Well's mouth, "they were all thankful that Tessa is on my plate and not theirs." Another RED FLAG. I finally took my mother-in-law's advice and sought out a second opinion.

I contacted 2 other moms of kids with clefts that I have become friends with on this journey. They both brought up the same name, Dr. Urata with Children's Hospital Los Angeles. One of the moms actually switched from Dr. Wells to him not that long ago and, back then, recommended me to check him out. I didn't. So, Mark and I googled him and were very pleased with what we read and thought we'd give it a go.

The Present: We had our first appointment with Dr. Urata all the way in Santa Monica about 2 1/2 weeks ago. My prayer was for God to give him fresh eyes to see into Tessa's situation going on in her mouth AND that he would find favor with us and accept our insurance...when I called for the appointment they informed me that I needed a referral and that it may not go through b/c he doesn't take our insurance. Well, the appointment went VERY well, super nice younger guy (marathon material for sure!), he said he rarely turns people away, and finally, he laid out a plan that included getting Tessa into surgery as soon as possible to close up her palate. So, right then, we signed over to this guy. It was a leap of faith and I felt really good about it!
On the way home talking to Mark, I asked him how he thought things went...I love my husband, but I sure have a hard time understanding him sometimes. He's a realist and doesn't get too excited about too many things. He said, "It was alright. Anyone can look inside her mouth and say they can do the surgery. Dr. Wells has been in there quite a bit and knows exactly what's in there. Dr. Urata has never been inside." He said it so matter of factly...why didn't I think that? God knows I need a man who can keep my emotions even keel. Thanks Babe...even when you pop my bubble sometimes, I'm still super thankful for you. :)
I was still happy with our decision to make the switch. This Dr. Urata is a craniofacial doctor which means he ONLY deals with the neck and up. AND his focus is on children. I like that. Dr. Wells is a plastic surgeon who deals with you name it.
We got a call last week from his surgery scheduler and an opening came up for January 4th. Whoa, that's soon! Fortunately, Mark still has off and he'll be around to help and he won't have to take days off work for the surgery. Soon after that, we got a call from the hospital to schedule a pre-op for this past Monday (Dec.19), and then another phone call to get Tessa in to meet the Children's Hospital LA Cleft Team on May 31st. Whoa...this is all happening VERY fast! Our journey has picked up steam. Things are actually happening! We aren't quite used to this. :) However, we know that it's all in God's timing and He's got Tessa and us in the palm of His mighty hand!
So, this Monday, Tessa and I had a fun mommy-daughter date at Children's Hospital LA. We've never been there but we heard it was pretty cool. :) I had Tessa watch a video about last week to get her thinking about what's going to happen. She got pretty excited.

Then, Sunday night I was looking on the website to find out how to get there and where to go and all that stuff and ran across some pretty impressive documented information about Dr. Urata. think that this guy is going to operate on our daughter. God gives us an immeasurable amount of peace when we most need it. :) If you want to watch the video, you can go to youtube and type in: childrens hospital los angeles, merylou berriga. It's about a 25 minute video, but super impressive!

The appointment was awesome. Tessa did great, however, she did NOT like the waiting room. Too many kids, many of them looked "different" and were very friendly, that made her uncomfortable. I like it though. :) To see each one of these kids knowing that they have all had their own journey and they were all so friendly and didn't seem to notice any of the other kiddo's differences. It was a beautiful sight to see. :) Tessa will get there someday.
Our appointment was with one of Dr. Urata's fellows who is with him in most of his surgeries. I really like him too. One of the first things he said to me was, "Do you have any questions?" And then he proceeded to answer each and every one of my questions. He was patient with me, he didn't rush us out of there, of all, he made Tessa feel very comfortable. After our appointment we had a good time exploring the hospital. We went to the McDonald's inside the hospital (we never go to McDonald's), we checked out the gift shop, we walked around the outdoor courtyard that was all decorated for Christmas, we went to a storyteller where Tessa got a free book and got to color a picture, and we played with a lot of the hands on stuff around the hospital. We had a great time! We felt really good about the visit and I don't think Tessa's too scared about the operation. (Actually, I don't really think it's sunk in JUST yet.)
A few answers that I got:
- surgery will last 2-3 hours
- 1 night stay, both parents are able to stay overnight
- 6 week recovery, 1 week on yummy tasting meds, 6 weeks on soft foods, no straws
- she'll miss about a week of school
- plus lots of other things that I won't bore you with unless you want to ask me yourself

The Future: Surgery on January 4th...the rest is in God's hands. :)

We'll keep you posted on the blog. Stay tuned!


debtfreesoldier said...

Praise be to God!! It is so exciting to see God's Hand at work! I heard your voice message today and wanted to call but never had a quiet moment to call you back. I'm so glad to see this update!! You will continue to be in my prayers as you get ready for this next stage in the marathon.

Anonymous said...

We are praying for Tessa, her surgical team and your family. We met you several years ago at baby Jordan joys first birthday party.