Ethan's Cleft Lip/Palate Journey

Today is Ethan's 4th birthday, and I figured in honor of that it would be a great time to share some of the journey he has been on in those last 4 years with his cleft lip and palate. I hope this will  shed some light on a situation that others will embark on and hopefully this can be some encouragement or guidance for them.

When we first found out we were pregnant with Ethan, Jake and I were overjoyed to be blessed enough to add a 7th member to our family. My pregnancy wasn't to bad, until they did a glucose test and found out I had developed gestational diabetes. I started seeing a high risk specialist to manage my sugars. At first altering my diet was enough, but as time went on it wasn't enough and I started taking the pills to manage my sugars. The high risk specialists did regular monthly ultrasounds to keep an eye on his growth and development. At the last ultra sound the technician said to me, his hands is in the way and I can't see his upper lip very good, now have you I thought it was a little weird for them to say that since I have been in for many ultrasounds before and baby's hands are near their mouth a lot, never has anyone said anything about it. I told Jake about it and we kind of blew it off. 

As the pregnancy continued my sugars became harder and harder to control with the pills and it finally got to the point they wanted to do an amniocentesis to check for lung maturity to induce me before he got to big. They wanted one last ultra sound that day to do measurements and then the amnio the next day. During the ultra sound the technician left the room to go show the doctor the photos as they always do, but she came back with the doctor, who proceeded to tell me that they were quite sure that he had a cleft lip. There was no way to tell the extent of the cleft lip, or anything else about the internal anatomy in his mouth until he was born. 

The following day I went into the doctor for the amnio, and it came back his lungs were mature. I just waited for the nurse to call from the hospital, to head down to be induced. 3 hours later we got the call and we were headed down to get induced. 

My delivery went good, Ethan was born, and weighed 7lbs 4oz, after the doctors checked him out, it was decided that he had the unilateral cleft lip (cleft lip on only 1 side) and a partial cleft palate (meaning there is a hole in the palate but it doesn't come all the way to the front through his nose. The cleft team came into the room to take a look at him while we were there, and told me we would have to wait 3 months for his first surgery to repair the cleft lip, and for now we just wanted him to be as healthy as could be. I decided nursing was the best start for him, despite the fact it was very painful because his latch was not normal due to the cleft lip and palate, and also the doctors telling me he would gain weight better if he was bottle fed. When Jake would help with feedings a regular bottle wouldn't work, we used a special bottle called a Haberman Feeder. The 3 months went by and he had gained weight great and was approved for surgery. He was scheduled for surgery 8/13/2008.

Pictures the night before his surgery.

Here he is the morning of his Cleft Lip surgery waiting in the hospital room.

Sleeping after surgery, which is what he did the rest of that day.

They stitched his lip on the inside and used a special glue on the outside, which is why his lip looks shiny. He also was supposed to keep arm braces called "no no's" on so he wouldn't accidentally injure the lip at all, but he hated them very much and we just made sure to watch him very carefully and didn't have any problems. 

Here he is ready to go home the day after surgery.

2 months post op you can barely see the scar where his lip was fixed.

3 months post op.

4 months post op.

Here he is at 6 months post op and you can barely even tell he was born with a cleft lip! His doctor sure did and amazing job!

Next, normally a child with a cleft palate would have surgery before their 1st birthday to prevent any speech impairments. But because Ethan only had a partial palate he only had a 50% chance of needing it repaired, and the only way to tell was to wait and see if he ended up with speech problems. Well we waited and his speech at 2 was still very behind. They finally signed him up to meet weekly with a speech therapist in hopes the speech problems were something that were not related to the cleft palate. After meeting with the speech therapist for 5 months, she was very sure his speech problems were palate related, and wrote a letter to the doctor letting him know so. The doctor scheduled his surgery for January 21, 2011 he would have to stay overnight and should be able to go home the next day. 

I got in touch with the social workers at the hospital and set up a tour to help prepare Ethan for surgery day.  They got us in to tour the hospital about a week before surgery, and it was a wonderful way to help prepare him for the road ahead! 

We had to get all suited up to go into the surgical rooms, Ethan was mesmerized by all the machines!

Here we are again the morning of surgery with his cap and hospital clothes on. Only Ethan could look that cheerful at 5:30 in the morning lol.

The surgery went very well, but the big job now was to keep him away from food for 8 weeks...  They explained that if any object was to scrape the roof of his mouth it could ruin everything that they had done, because the stitches to repair the palate went from 1/3 back in the roof of his mouth all the way down about half way down his throat. The doctor actually got rude with me when I asked him if that was safe, to not let a child eat anything for 8 weeks. It was a rough 8 weeks, but we got through it. The first 4 weeks was a complete liquid diet and the last 4 weeks we were able to add pureed food. It was like torture to tell my child that he couldn't eat, for 8 weeks straight! But we got through it, and he now has a new found love of food!

Ethan had a rough time with the pain meds, he was given a dose while still in recovery and the medicine made him sick, so he wouldn't take any other medicine the rest of his recovery time. He looks miserable in these pictures. Don't let that fool you though that day was bad but, the next day we were able to go home, and he ran in the house wanting to play with the boys like nothing happened. Kids are so resilient! 

Following surgery Ethan had to be kept out of speech for 8 weeks, but during that time I was able to see so many improvements in his speech I was so encouraged! After the 8 weeks was up we continued his speech on a weekly basis, we were seeing dramatic improvements in his speech. After further testing we have found out that Ethan did not only struggle with his speech due to his cleft palate, but also that he has speech apraxia. This little guy has lead us down many paths in 4 years (this story being just one of them) and will continue to lead us down some trying paths, but God continues to guide us and give us so much strength! 

Ethan has been such a blessing to us, he has helped us grow so much as a parents, and we are so blessed to be his parents! Happy Birthday Ethan!

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