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“Two Arms, Two Legs and a Beating Heart, I’m Happy.”

As I sit here, our little Henry just fell back asleep in his swing after pulling out his NAM (nasal alveolar molding) and now I am getting new tape, rubber bands and glue together so when he wakes up I can put it back in. It’s also my birthday, and about 6 weeks before his first surgery to repair his lip,nose and gums.

Henry was born with a Bilateral Cleft Lip and Palate. We found out at our 20 week anatomy scan. We could tell something was wrong when the Ultra Sound Tech left and was gone, for what felt like forever, and my OBGYN returned with her. She proceeded to tell us that they think our son has a cleft lip and possible palate and they wanted to do a 3D to confirm. I was in shock and of course I was upset and started crying. I have seen Operation Smile commercials of little kids with clefts but I knew nothing about them.

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It was confirmed then and throughout the day I was still upset. And then someone said to me, I don’t even remember who, “It’s okay to be upset, you need to grieve your idea of “the perfect baby”. I loved this so much. It reassured me that it was okay to have those feelings. Sometimes when I am upset or feeling sorry for myself, I think “geez, get over it, at least your baby will be okay” It’s still hard.

My husband was a godsend, in the Dr’s office he was comforting, and positive. His reaction? “As long as he has two arms, two legs and a beating heart, I’m happy.”

I vowed not to let my curiosity get to me and I banned myself from googling. Instead, I looked for support from parents who have gone or are going through the same thing. I found the Baby Center, cleft forum, and many Facebook groups of parents of cleft children including one just for parents that live in NY/NJ/PA.

These groups were amazing. They really eased my fears and I saw so many adorable, smart, thriving children.

We decided to go with the Cleft Team and Surgeon at NYU. We met with them when I was around 34 weeks. They talked about what was ahead for us, the different surgeries, how to feed our child, what to expect in delivery and how to talk to the Nurses/Drs who might not have experience with cleft babies. They were so helpful. One thing that I really appreciated was the coordinator telling us we have to be our own advocates. There is no reason if the baby is feeding fine with the bottles that they should be in the NICU just for the cleft.

They also use an appliance called the NAM (nasal alveolar molding) the team actually invented this device 21 years ago as a less invasive way to bring his lips and gums together, and shape the nose so there only had to be one surgery for those elements instead of 3.

With this device also comes a huge time commitment. We have to travel to NYU every week for adjustments to the device as he grows and everything starts moving. It’s also a lot of work at home with keeping it clean and taping. But seems so worth it for him to go though as few surgeries as possible

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I knew we made the right choice.

Leaving the meeting with our cleft team I was confident, relieved and ready for this baby to arrive…but first I had to order all of the special bottles…

Continue reading about our journey….

 

Rosie

Thursday 23rd of April 2015

I think what your husband said was pretty awesome. I'm 6 1/2 mo. pregnant with my 4th and lived 100 miles from the nearest town. As a result I struggled to find any prenatal care and the very first thing I got was a 20 week ultrasound. A local rural care doctor (who fully admitted that she is not set up to do prenatal care but she was worried I'd had no care and ordered the ultrasound at a minimum) read the results in front of me and hesitated before saying I had Trisomy 18. It's a chromosome issue that's considered "non compatible with life". I had to figure out how to bury my baby who would likely not live more than hours or days after birth while living out of our home state and totally alone. And it was 2 more months before I got any more info about it. I have since had a more advanced ultrasound and been completely cleared of T-18 and the baby is perfect. Can you believe that? So I choked up a little when I read your husband's response because when you are told your baby will die at birth, I would have given anything in the world to hear that my baby had something wrong, but would still live. I always assumed my babies would be born healthy (I have had 3 home births). Now I understand that mentality of "as long as they are healthy and happy, I don't care what they look like".

HOMEGIRL

Wednesday 29th of April 2015

Rosie, I can't even imagine if I was told the news you were, and then find out it wasn't the case! Wow, these crazy kids put us through so many emotions that I never knew I had. I'm glad you will be having a health baby. Puts it all into perspective right? God bless.