Tuesday, February 19, 2008

Testimony Tuesday

This week mark's two years since Elsie's cleft palate repair surgery so I find it only fitting to write about that experience today. Recently, I "met" someone online who just gave birth to a little girl that has a soft cleft palate. Unfortunately, testing shows that her little girl is also unable to hear. She did say that her little one startles a bit when her 15 month old reaches a certain pitch. I'm praying that her hearing is completely restored. The whole thing has me remind myself how blessed we are that we've had no other problems associated with Elsie's palate.

Elsie was born on February 25, 2005. I had an easy labor, and she arrived at 11:41 p.m. I remember the first thing the nurse said was that she had a head full of hair! Jason and I were so pleased to meet our beautiful daughter, and I was anxious to start breastfeeding. Unfortunately, Elsie just wasn't getting it. I saw a couple different lactation consultants while we were there, and they had me trying Supplemental Nursing Systems and Breast shields...nothing was working, but I was determined, and we ended up tube feeding her formula just to get something in her. I was still working on nursing so I didn't want to give her a bottle.

Anyway, because of the feeding problem, we were in the hospital for 5 days. On our last night, Jason happened to mention that Elsie had a hole in her mouth...so, we mentioned that to the nurse, and the next morning, her pediatrician came in and diagnosed her with a cleft palate. Now, the first thought that ran through my mind was, "No she doesn't, she looks perfect!" The only cleft I'd heard of was cleft lip, which would be obvious to anyone. The palate is the roof of your mouth. If you feel along the roof of your mouth with your tongue, you can feel the difference between your hard palate and your soft palate. Elsie had no soft palate. Our beautiful, perfect, brand new baby girl had no soft palate. No soft palate meant no suction for nursing. We kept trying for the first 2 weeks after Elsie was born. I pumped breastmilk, and we were still tube feeding her. Tube feeding is messy and time consuming. All of the reading I had done showed that it was nearly impossible to effectively nurse a baby with a cleft palate so we switched to the Haberman Feeder and everyone was happy. It allowed us to control the milk flow and Elsie had to work a lot less to get the milk.

The Haberman Feeder:


When Elsie was two weeks old, we visited the Craniofacial Clinic at Children's Mercy. The team there is outstanding, and we came up with a plan to have Elsie's palate repaired around the time of her first birthday. I learned a lot that day. I learned that many cleft palate patients have trouble with their ears...hearing was a major concern, and at two weeks old, Elsie was having her hearing tested for the third time. She passed all 3 tests! Also,the roof of your mouth separates your mouth from your ears. So, you can imagine the problems that can arise when what should be closed is open. When she was two weeks old, her pediatrician along with the doctors and nurses at the hospital expected her to need tubes in her ears by the time she was 3 months old. After her surgery, we'd need to come back once a year for her to have a speech evaluation to make sure she wouldn't need any more surgeries

One of the things I won't forget about our visit to Children's Mercy are the people we met there. When you go for a clinic, you're there from about 7 a.m. to 2 p.m. It's a long day, and you meet lots of people. So, you'll meet with the nutritionist and then go sit in the waiting room until you see the dentist and then wait for the surgeon, and then wait for the ENT, etc. There are many other people doing this waiting and meeting game as well. In the several visits we made to the hospital, I didn't meet another family that only had cleft problems. I met parents with children who were visiting and had already had several surgeries. I met parents with children who had much more severe problems than their clefts. I don't remember the names of what they were diagnosed with. I don't remember their stories because it's not my story.

We took our baby girl home, and we loved her. We fed her, bathed her, played with her, watched her smile and laugh for the first time. We watched her learn to roll over, sit up on her own, pull up, stand, and take those precious first steps. Elsie didn't have a single ear infection until she was 10 months old, and her pediatrician said it was mild. It's been more than two years since then, and she hasn't had another. No tubes here! When Elsie was 11 months old, we started preparing for surgery, I replaced one feeding a day with a sippy cup (no spill proof valve) since she wouldn't be able to have anything in her mouth after the surgery. The first few days were rough, but after she got that first cup feeding down, the rest quickly followed and within two weeks, she was completely off the bottle. One week before the surgery, we quit the paci cold turkey. So, we were ready. She was healthy, and one cold day in February we made a trip back to Kansas City.

I was determined not to let her see me cry, but I didn't even make it past the security check at the hospital! I recovered in the elevator and we met with a nurse who measured her height and weight. We got her dressed in a cute little infant-sized hospital gown, and we played with bubbles while we waited. Then, we met a nurse out in the hallway and for the first time in a year, I handed my baby to someone besides my husband and had to walk away. It was the first time neither one of us would be with her. We went to the waiting room and waited. I left for awhile to go down the hall to a pumping room...how cool that they had those! Shortly after I returned, the surgeon came in to meet with us. Elsie was in recovery and the surgery had went well. Next, we went to meet up with her at the same place we'd left her with the nurse. She was in a crib this time, and I just remember thinking she looked like she'd been beat up. The 24 hours after that went by pretty quickly. We just held her while she slept mostly. She had to wear arm splints to prevent her from putting anything in her mouth. We fed her whenever she was awake and then we made the trip back home and started the recovery process. At home, we only put the arm splints on her while she was sleeping, and I kept a close eye on her during the day. She continued to eat from her valveless sippy cup and slowly we were able to introduce soft foods and eventually table foods. Now, she's just as perfect as the day she was born!

Honestly though, that all seems like it's ancient history now. I seriously think I cried more over pumping instead of nursing than I cried over Elsie's palate. I gave up pumping after her recovery from surgery was complete. Overall, our biggest problems weren't really problems at all just extra care. We had to keep her upright for an hour after she ate before her surgery or she would sometimes have blockage in her throat which made breathing more difficult. Keeping her upright seemed to decrease those chances dramatically. She couldn't eat table foods until after her recovery because she'd just gag on them. Other than those things, life was fairly normal for her. Now, those are all things of the past, and she won't remember any of it. At the time, those things were pretty stressful for us, but I'm thankful for the road we got to travel looking back on the experience. To God be the glory!

Here's a picture of Elsie just moments after she was born...funny how her cleft is clear as day here and it took 5 days for a diagnosis!




Elsie after her surgery

6 comments:

Amy Craft said...

I am so glad that I found your blog off of BBC. I also have "met" the mommy you are talking about and hope I can help her/advise her in any way I can.

Reading your story I felt like I was reading parts of my own life. My beautiful little girl was born on 10/31/06 with a cleft palate in the soft palate. Hers was found right after birth (when they were cleaning her up). She was in the NICU for a week due to feeding issues and they thought she also had PRS. In December they ruled out PRS and diagnosed it as an isolated cleft palate.

Just like the other mommy she had flat tymps--couldn't hear until she had tubes at 3 months and is nowe doing great. Unfortunately she had some complications with her cleft surgery but is now doing great.

I am a pediatric SLP and having a child with a birth defect has made me a better mommy and therapist. I will admit there were times I asked "why my baby?" but I know that God had a reason. I thank him every day for our special little girl.

I am so glad to hear that Elsie is doing so well. Thank you for this Testimony Tuesday it really meant a lot to me.

Amy

Julie said...

Gosh, we really have walked in the same shoes...the Haberman, the all day Cranio-Facial clinics, the arm stints, the feeding issues, the pumping...ugh the pumping.

One of the best things someone said to me in the first days when I was so overwhelmed was "Zoe will not be defined by her cleft, she will be defined by her parents love." It reassured me that her cleft will someday just be an interesting story, like Elsie's, a part of her past.

I always feel like Zoe's cleft was God's way of making sure Zoe had the very special attention she deserved. We were distracted when Zoe was born (recent move, family illness, lots of changes) and it was His way of saying "Stop, this baby needs you. Nothing else is important."

She will probably have more surgeries in her future but she is my beautiful, beautiful girl and we'll take them as they come.

Thank you for sharing Elsie's story, it really touched me.

Julie

Tierd said...

Thank you for posting this - I had no idea what soft cleft palate meant until I read this and saw the picture. So glad she's completely healed now! Jen

Cheryl said...

I love Testimony Tuesday...but is it always going to make me cry?

Amelia said...

Hi,
You found me too in the Special Babies thread at Babycenter.I found your blog via your signature.

Thank you for sharing your story. We are in a holding pattern for Teagan's surgery. We go back in June for our second visit to the Cleft Clinic. Knock on wood- no problems so far. Just a 2.5 month old with a crazy cute smile.

I might be reaching out again when we start to wean the bottle and go to a sippy cup etc. What kind did you use? Any specific brand?

Amy (amelia1989 on babycenter)

Mandalynn said...

Amy-I'm glad your little girl is doing so well! That's great!

Julie-I've always thought you have two gorgeous girls! And I agree with the advice you were given. I think the cleft issues were much harder on us as parents than they were on our children.

Cheryl-I hope Tuesdays don't always make you cry! It just seems that the sorrows and circumstances life sometimes brings are also those that draw us closer to God and ultimately lead us to a life of victory with joy and freedom. I think it's a misconception that the Christian life should be an easy one when I've come to expect trials and know that God's strength is larger than any circumstance I might go up against.

Amelia-We used Munchkin Insulated Big Kid Cups. They had Dora the Explorer on them, and I believe I've seen Spongebob before as well. Anyway, the spout is raised so it's more like the lip of a regular cup. We just took the spillproof valve out and would let her sip from them. It was messy at first, but she got a lot better at it. We weren't able to hold it up continuously like a bottle so it was more time consuming, but we only had to do that for a few months. Once she had recovered from surgery, she was able to use a regular sippy cup. Then, we had the best luck with the Nuby cups with the silicone spout. We found that they would leak after just a few uses so we switched to a Gerber Transition Cup. It has a soft spout as well.