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
