Can you imagine not having a lip or the roof of your mouth and trying to eat? Well that is what our cleft babies are faced with. I am never one to sugar coat things, so I would be lying to you if I didn’t say Colton’s first 2 months of his life were the most challenging of mine. Its ok to be jealous of other moms who are able to breast-feed and you can sit and relax while feeding their baby, while every feed feels so difficult and a workout for the two of you. I remember asking myself, “Why is everything have to be so hard for us?” I would sit and watch my girlfriends surf Facebook with their free hand, while feeding their babies, while I had to listen carefully to Colton’s breathing and swallowing to ensure that I was squeezing the milk and not choking him. I remember thinking that I wish Colton was my first, because I wouldn’t have known how easy it was to breast feed my oldest. It is challenging, but not impossible and there are some great tricks that made a huge difference for us.
As I mentioned before, Colton struggled for a long time to gain weight, he was burning more calories eating then he was getting. From day one we were told by the Cleft team from Boston Children’s to use the Heberman Bottle, so I can only speak to my experience with that bottle, but I am aware there are many other ways to feed a cleft baby. The Heberman bottle allows me to squeeze the milk into his mouth, as they are unable to suck milk themselves. One of the challenges is getting in a rhythm with the baby where when they are swallowing the milk, you are not squeezing more milk, as this can make them cough, choke, and unable to properly swallow. It only takes time and experience to be able to listen to your baby and hear them “suck, swallow, breath” and get in a good rhythm.
In the beginning, Colton was getting so much air when he drank he would get too full or have a bubble that wouldn’t allow him to drink more milk. After multiple phone calls and emails to the cleft nurse at Boston Children’s, I learned that simple tricks of sitting him upright when feeding helped with the air and placing one of your fingers under their chin when feeding, gives them more support to swallow better. Gently pushing your pinkie finger up under their chin allows the tongue to not have to work as hard and take in the milk with using fewer calories. Who would have know that the tongue could burn so many calories, but the chin support made a world of difference, as he started to gain weight when we added this technique.
We went to our pediatricians every 4 days to weight him and had to move up to a 24-calorie diet, which at the time I didn’t even know was possible! Regular breast milk and formula are about 20 calories per ounce, and if you add a small amount of formula to the breast milk you are able to increase the calories, but of course it has to be a regulated as it can also effect their digestive system, but there are many options to try before a baby needs to be placed on a feeding tube.
Even with chin support and sitting upright, your baby will still swallow so much air, and burping them is very important. You will feel like half of your day is spent burping, but it will only make them more comfortable and want to eat more. There were feeds that he would not burp and just scream or would just fall right asleep when I started to burp him, when he needed more ounces. I would start to get frustrated and in order to distract myself from the feeling of defeat or frustration; I started to play audio books on my phone. I missed reading and had no energy to pick up a book anymore, but also because in those heated moments of wanting to just give up, I would re-direct my attention to the audio book and keep burping. The other helpful hint I learned when he would start to fall asleep when I burped him and he needed to eat more was babies like to be tapped, but when you would rub their backs in a circle motion, it helps get the air up, but not put them to sleep with the tapping. It seemed to keep him awake to get those few extra ounces in, which are so important for little guys.
I can’t help but smile when writing this post, as Colton is now 21 pounds, is 83% for weight and 90% for height, he is 7 months old and in 18 month clothes, so ladies there is hope, don’t give up, and don’t be afraid to ask “what else could I be doing?”
Cleft lip
The Journey, Part 2
Very common with Cleft Palate babies there can be an issue with a large amount of amniotic fluid build up as the baby has trouble swallowing the fluid and during one of my routine ultrasounds it is apparent that is what is happening in my case. The large amount of fluid is called Polyhydramnios. Polyhydramnios occurs in 1% of pregnancies. To give you an idea of how much extra fluid there is, at my 28 week checkup my belly was measuring 35 weeks. I knew I had gotten big quickly, but I had no idea how big I really am. What can happen is the weight of the fluid can push on my body causing it to think the baby is dropping and to start contracting very early and put me in labor. Of course as any mom to be would do I fear the risk that going into labor so early would have on the baby’s organs not being developed on top of the hurdles we are going to have to go through with the cleft. The best case would be that I will just be as big if not bigger than a woman having twins and continue to be monitored on a weekly basis.
I again feel so luck that I live in a time that we are well informed of what is happening to our babies in utero through the technology of ultrasounds and have access to medical devices that we will need if this baby comes premature. I can only sit and wait to see how my body will deal with the extra weight of the fluid and make my husband tackle that “Honey Do” list ASAP 🙂
Maggie's Memos 