Now that the 9 month journey into motherhood had come to fruition, my immediate focus was on that precious baby girl who depended solely on us for survival!
When Sophia was born and placed on my chest for the very first time in the delivery room, the nurse placed her on my breast to see if she would latch on. As hard as she tried, and boy was she strong-willed and determined to latch on, she simply could not. Her cleft lip did not allow the proper suction needed to be able to breast feed. It was sad for me to see her efforts fail, but this was something I had already been prepared for well in advance. In the hospital I was taught to pump and a lactation nurse assisted with the extraction of that very important colostrum. Though it wasn’t much, every little ounce was helpful and fed to her via syringe. I was able to pump for just a few months because my supply would diminish with each passing day. I have a very vivid memory of pumping one early morning at home, for over an hour only to spill my entire supply…boy did the phrase “don’t cry over spilled milk” take on a new meaning for me!!! I didn’t have enough milk to store, so I would pump, then feed her immediately with her specialty, Haberman bottle. We alternated between breast milk and formula.
At two weeks we had our first appointment with her dental team. This little person who I vowed to protect was scheduled for a dental impression in order to create a custom mold, which would enable them to make a mouthpiece (similar to a retainer), that would assist in closing the gap prior to surgery. It gradually applies pressure to lessen the severity of the gap and also helps shape the nose prior to surgery. The process of holding down a 2 week old while they fill her mouth with goo and force it closed in order to create the impression was not a pleasant experience to say the least. I did not have the courage to hold her little arms down while she screamed bloody murder and everyone just sat there counting down with the clock. The impression had to harden enough to be useful and if we weren’t patient and didn’t wait the allocated time, we would just have to repeat the already gut wrenching process. As I said, I was not strong enough to partake in this procedure (not the first time anyways), so daddy had to step in and take charge while I cried by myself in the back of the room. What seemed like a lifetime of helplessness to a new mom, was actually completed in under two minutes. The doctors and nurses were an amazing set of people with nothing but compassion shown for all the parents going through this process. We had 4 babies going through the process at the same time who were roughly the same age. If I can recommend anything to someone in my shoes it would be to have a bottle ready at the end of each procedure, this saved us every single time. The process is not painful, but it is very stressful on the little one AND the parents. In addition to having the baby’s bottle ready, you should also consider having one waiting for you at home! 😉
Sophia started with roughly a 13 mm gap and went through several appliances (NAMS) before surgery. We had visits once a week and new appliances were made as needed, we went through about 5 or 6 in total. Since their skin is so fragile, a special tape is placed on each cheek to avoid the constant ripping of the pieces that are changed numerous times throughout the day. As you will see in the pictures below, the appliance has a piece that sticks out which is then used to attach rubber bands and tape on her check to create the pressure required. The piece was held together with glue that made it stick to the roof of her mouth. The longer the NAM stayed on, the quicker and better her gap would close. We were very strict on following doctors orders, she even slept with her appliance. I found feeding to be a little easier as she now had a makeshift palate which assisted with suction. We did however go through quite a few nipples which were not cheap or easy to find at the time. I believe they are now sold in local baby stores but back then there was only 1 place on-line that sold them. After about 4 weeks of wearing the NAM, they added a piece which went in her nostril. This piece was responsible for opening, stretching and basically re-shaping her nostril which was flat at birth. She took to the NAMS quite easily and never complained or tried removing them. I think it was our constant use of the piece that just made it second nature to her.
Our dentist commended us for being so strict and staying on top of it throughout the 5 month process. Turns out Sophia broke the record for having the fastest closure on her opening. I believe her gap was less than 5 mm when we were done prior to surgery.
Suffice it to say we did not sleep very much for the first 5 months, between pumping, feedings every 3 hours and constantly checking to make sure her mouthpiece didn’t fall off and get lodged in her throat. In order to be able to check on her constantly, we decided to bring her to bed with us and kept her in a portable carrier so we would not roll on top of her in the middle of the night. This worked extremely well for us.
The first five months flew by. Our baby girl was flourishing and her little face started to take on a new look with each passing day. Her gap was closing. Her nose was expanding, and we could clearly see the difference that her NAM made each and every day. She was growing and hitting all her milestones. She was eating. She was laughing and she was just the happiest baby on the planet. Her smile truly lit up the room and believe it or not, we knew we were going to miss her face after the surgery, we just didn’t know how much until it happened! In my next blog I will talk about her surgery and our experience in getting through it. For those of you going through something similar, try not to jump ahead of yourselves, this is a very long journey. Take things as they come and enjoy time with your baby. Take lots and lots of pictures because they change so much every single day. Take baby steps with your child and enjoy the ride. Much love to you all! ❤