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Journey to Surgery

When Henry was born he was taken to the Nursery for monitoring because his heart rate would speed up and then drop.

We were told by our cleft team that many hospitals would always just take cleft babies into the NICU. The cleft team was very adamant that if the only reason the baby was taken into the NICU was because of the cleft, they shouldn’t be in the NICU.

So as I was in recovery from the C-section, Bill was going back and forth bringing me pictures and updates on Henry.

When I was finally moved into our room, one of the NICU nurses who was keeping an eye on Henry in the Nursery came in to get one of our special bottles that we brought and about 30 mins later she came in to tell us that he was eating like champ. Which is usually the hardest thing for a cleft baby to adapt to and one of the most common reasons they were put into the NICU.

His heart rate was starting normalize and the nurse was comfortable enough to bring him into our room. I finally got to meet my son 5  hours after he was born and from there our journey began.

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When Henry was 8 days old we took our first trip down to the NYC for his first meeting with his cleft team.

At this meeting they took an impression of Henry’s mouth. This is the only time (besides surgery) that I wasn’t allowed in the room. The reason is because of the way they have to hold him, facing out and upside down, can be a little traumatizing to the parents. They do this so the baby will cry and so the silicone that they do the impression with does not go into his airway.

I thought it might be hard to hand him over but he was actually sleeping so it was fine, and about 5 minutes later they were done and he was still sleeping.

First trip of our 5 month journey complete.

4 days later when Henry was only 12 days only his NAM was ready for insertion.

We rode down to the city, with my mom, and they inserted the NAM and made adjustments where they needed to. Remember the NAM is only held in his mouth by two dental rubber bands held by medical tape. It is these tapes that will be the most annoying part throughout the process. Mostly towards the end because he started to to pull at them and they would start to come off from drool and milk.

The team showed us how to insert the NAM, take it out, make the tapes for his cheeks, showed us the tension they needed to be and answered any questions. Thank goodness for Grammie who pre-made all the tapes for Henry. They are made out of a medical tape called Steri-Strips. So when she would start making them every time she came down we called it Sheri’s Steri Shop.

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What I wasn’t ready for was how much the tape would change his face. Because he was so small, his face was really squishy and it made him look like a little sad puppy. I looked forward to taking out the NAM and cleaning it just so I could see my little boy’s face again.

We had to drive down to the city every Wednesday until the day of his surgery, and because of this I think we should have bought stock in gas and Dunkin Donuts.

Within one week we were already seeing the results of the NAM. His gap was coming closer. So we were thrilled! Every week they would make an adjustment to accommodate the transition and his growing.

In January when his premaxila was centered we were able to start the nose stents which would help shape his nose, and start to stretch his columella (the bar in-between the nostrils). This was also achieved with Prolabium taping.  Stretching the columella is so the surgeon would have the most skin to work with. If there wasn’t enough columella then he would have to kind of “make” one which would result in scar tissue.

The Dr’s were extremely happy with his results and we were ready for surgery!

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I must say having a cleft baby is difficult at times but he is such a calm, happy baby he has made this process a lot easier than I expected.

When I would go out we would still get everyone that wants to “see the baby” while he’s in the car seat. It was awkward at first because I didn’t know if I should tell people  that he had a cleft or wait till they asked.

I opted to tell people when they looked. I didn’t want it to be awkward or have them wondering what was “wrong” with him. Instead I decided to open the door for conversation.

There was one person who wanted to see the baby, and I said he was born with a cleft lip and palate. She then said “oh thats sad because you probably want to show him off”

Now, I don’t get offended really easily but many of the mom’s in the groups and forums I am a part with would have been insulted, angry etc because of course we want to show him off!  The cleft doesn’t change that! But I know it can be awkward at times when people just don’t know what to say. I gave her the benefit of the doubt because I’m sure she didn’t mean it to be rude.

I definitely fell in love with his wide smile and as surgery was getting closer I was getting sad that he would no longer have the smile he was born with and that I fell in love with…but I guess I’m lucky because I get to love two smiles.

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Continue reading about our journey….

Mary Anne

Monday 2nd of March 2020

Hi, my name is Mary Anne. I am 66 years old and am writing a memoir. And I want to thank you for writing about your experience. A year and a half before I was born, my brother Tommy (third child) was born with a bi-lateral cleft lip and severe cleft palate. At that time, we lived a half hour from the Lancaster Cleft Palate Clinic in Pennsylvania, a world renown clinic at the time. Tommy got state-of-the-art care and looked great in early pictures. Unfortunately, he died in an accident at age 2, so I never saw him alive. About a year and a half after I was born, my brother, Forrest, was born with a unilateral cleft lip and severe cleft palate. He, also, received wonderful treatment in Lancaster. He went on to pursue a music career and still loves singing today. His speech is as clear as mine is. Not all 65-year-olds born with cleft palate can speak so clearly, unfortunately. I've always been so happy for him in this regard. I know in part what his regimen of speech therapy was like and how hard he worked. What I don't have much data on is what it might have been like for my parents to raise a cleft palate child in especially that first couple years. Being able to read your blog has helped me fill in the gaps (no pun intended!) of what I know my mother, especially, went through to feed him or what it was like for her to push him in a baby buggy (at the time) for all to see. So, thank you for sharing!

HOMEGIRL

Monday 9th of March 2020

Thank you so much for sharing your story with me Mary Anne!