Part Three: Advice for New Moms

Is there anything you wish you had known before Allie was born that could have helped you better prepare?

My 28 year old self would say, “No, not really, “ but that was 27 years ago and we didn’t have any of the resources we do today with the internet. I had to ask, research, think and process so much of the journey on my own. My sister had a friend who had a son with a cleft and she was an immense help. She sent me paperwork and booklets explaining craniofacial anomalies.

Today it’s a different story with all of the resources online. The ability to reach out and learn from others would have been a huge blessing. A network of moms, surgeons and doctors helping one another would have been something I would have loved to be a part of.

At Children’s Hospital of Orange County (CHOC), there was a group of families that began a support group but truly it fizzled when lives became so busy and the severity of the medical conditions varied. I don’t think we really bonded because so many of us wanted an escape instead of another night talking about medical stuff. I actually think I was lucky to not have know Allie was going to be born with a cleft lip and palate until she came into this big world.

What were the biggest challenges you faced right after her birth? Emotional challenges, medical challenges, etc.

My biggest challenges right after Allie was born was trying to find the best surgeon, doctor, and path for my baby. Before I left the hospital with my newborn baby, the nurse told me my biggest challenge would be having her gain weight and sucking on her bottle. I knew I wouldn’t be able to nurse and honestly, with her sister, Taylor, only being 15 1/2 months old, I was fine with that. My goal was to have Allie healthy and gain weight for her first surgery.

She would intake a lot of air when she ate, which meant she battled with pain in her tummy. She would cry so much as an infant and I knew she was so uncomfortable. This was so hard on me as a mama, but it was so much harder on her. I don’t remember the doctors or nurses telling me to be aware of any these little signs that may happen to my baby. I had to figure it out alone and that was frightening.

Emotionally, I know can reflect and know I was trying my hardest to be okay with all of this. I know I put on my “game face” for my family, especially for my mom. I know I was trying to rise above the situation to be brave and not worry my parents and my husband. I could see my mom, who loved me so much, worry about her daughter now facing this big challenge. I always said, “I got this, Mom“ or “It’s going to be fine!“ I didn’t want my parents to worry that I couldn’t handle the task. I was a 28 year old mom of two beautiful girls and I was going to fight to do whatever I could to make it work out for my Allie.

Medically, I had amazing insurance, but since I was on a maternity leave with my first baby, and then having Allie so quickly after Taylor, my income was literally nothing . My husband and I qualified for CCS, which, back then, was called Crippled Children’s Society. I still don’t understand it all, but from what I do remember, the surgeons would take less on their pay due to the CCS eligibility. My insurance kicked in the rest and as long as I was eligible, it was less of a burden financially.

There were many challenges, but for me, it was my mission to overcome them and get the best care for my Allie .

What do you wish family/friends/visitors would have known about Allie?

Well, I think being just as excited to welcome her into the world as it they were welcoming her older sister, Taylor. Come to the hospital if parents are ready for that. Bring balloons and cards to welcome their new baby. It’s okay if you’re a little worried about what to say. Just let mom know you’re there for her and are willing to do whatever you can do to help out. Ask to hold the baby, or, if it’s okay, try to feed the baby. Fear wasn’t part of my mindset then, it was to be normal.

My friends were rockstars with me. I was extremely fortunate to be surrounded by amazing friends and family who I felt never saw Allie differently. Yes, there were some differences in what we were going to face with Allie, but I never felt that my family or friends were scared or nervous to hold Allie or feed her etc. In fact, my lifelong friend, Tracy, offered to watch and take care of Allie many times so that my husband and I could go on a date.

How can new moms handle negative reactions and help others change their mindset?

I wasn’t going to stop my normal activities such as church, errands, public places, etc with my two girls. I can vividly remember taking Allie (before her first surgery) to the grocery store. I left Taylor at home with my husband and off I went to buy groceries with my sweet Alliecat .

As we all know, whenever we see a newborn in an infant carrier, we always wanna take a peek at the baby and “ohh” and “ahhh” over it. I knew this may be a little difficult for me because my baby wasn’t the typical “perfect” baby most people expect to see, however, I was as proud as they come! She’s mine and I’m hers, so take a peek if you like.

Here’s where it gets tricky. We were standing in line waiting to check out and the lady in front of me took a step back to see my baby. As she looks into her infant carrier, she gasped and looked at me as if I didn’t know my baby had an opening in her lip. She didn’t say a word. She looked like she felt sorry for me, as if I didn’t know.

REALLY??? Come on! Is this lady that ignorant?

I was so frustrated and my heart was pounding because I truly wanted to say something mean or ask her what was wrong. I went home that night wondering what is wrong with people. Don’t they know that I know? And what she could have said was, “Oh my, how old is your baby?“or “What a sweetie she is!“ or “What’s her name?” or “Isn’t she a blessing!”

Yes, these are the things we say - not gasp and go silent. We all have so many challenges in life…to be better prepared or kinder in our responses is key in these situations. In my line of work as a flight attendant, I constantly have to do a mental review when seated in my jumpseat. Anything can happen at anytime. I have to be prepared. This is a great mindset for people - to be mindful of differences and do a mental review on how to respond when situations are different than expected. After sharing the situation with my mom, her response was, “Honey, why don’t you stop taking her to the grocery store?“ I know this was a protective response, but it isn’t me at all. I could care less if people were uncomfortable looking at my baby. I wanted to scream from the rooftop,

“Look world! I have a baby! She has a cleft and it’s gonna be okay!”

Thanks for following along for Part 3 of this Q&A series and be sure to subscribe to hear Part 4: Allie’s Perspective next week! Feel free to leave any questions you would like Allie to answer in the comments!

...mg