“Why?” you ask?
I’ll try to keep this short, sweet, and hard to beat! 🙂
Shortly after Brady’s birth, we tried to see if he would nurse. While he was definitely interested, he wasn’t having much success. The nurse seemed to think he was a little “tongue-tied” because she could hear a clicking sound when he would try to suck. I didn’t think too much of it at the time (especially since it took Savannah time to get the hang of it) and we continued trying to nurse that night.
The morning after Brady’s birth, the pediatrician came by and filled us in on our little man. While the ped said he was super healthy, he broke the news to us that our little guy had a cleft palate.
“Cleft palate?” I thought.
I had heard of cleft palates before, but always thought they were associated with a cleft lip. Since there was no signs of a cleft lip, I was shocked when the ped mentioned a cleft palate. I assumed that they went hand in hand.
Clearly, I was wrong.
The pediatrician showed us Brady’s cleft palate, although it took some time for me to see what he was talking about. I guess I don’t look at my own mouth enough to even know what I was looking at. Brady’s cleft is towards the very back of his mouth, so it’s not as bad as some.
This is a picture from the internet. This cleft runs the entire length of the mouth, which Brady’s cleft does not. |
He proceeded to tell us that Brady would eventually need surgery to repair the cleft, and that while it was in no way life threatening, it would pose some challenges, mostly immediately with feeding.
Talk about taking the wind out of my sails……
Later in the day, we met with the Craniofacial surgery team at VCU and they were amazing. They took a look at Brady’s palate and then sat us down to discuss what the next year or so would look like for us.
First and foremost, we discussed feeding. Since Brady’s mouth essentially has a hole in the back of it, he is not able to nurse. While he can suck, he cannot get a strong enough suction to be able to nurse efficiently and without having to work way too hard for the milk (they compared it to him trying to drink through a straw with a hole in it). Our primary goal at this point is for Brady to gain weight and nursing would just cause him a lot of frustration and he would probably end up loosing weight (or not gaining it fast enough).
This here pump is both a lifesaver, but also the bain of my existence.
I was so hoping to be able to nurse Brady, as I did with Savannah, so having to use it 100% of the time is a huge disappointment. And as if breastfeeding doesn’t make you feel enough like a cow, hearing the sounds of the breast pump doesn’t do much to help!
But, while pumping is not what I was hoping for, it does allow me to feed Brady breast milk and helps on the budget! I have to be honest though and say that pumping and bottle feeding, with a busy toddler at home, has been super hard and I have no idea how long I will last doing it. Fortunately, there are great formulas out there too! I’m setting 3 month goals in my mind and will evaluate as we proceed along.
Back to our first consult with the Craniofacial team….
The team tried a couple of bottles and they found one they thought would work for him. So far, Brady is doing well with it. It’s basically just a special nipple that screws onto the top of a Medela bottle (it’s called the Medela Special Needs Feeder). This works well since I am using the Medela bottles to pump my milk.
I don’t know all the engineering behind how this bottle works, but basically it just helps Brady to get the milk without having to work quite as hard. As Brady sucks, more milk will trickle into the top portion, keeping the flow going. If anyone wants to know more details….you can email!
Aside from feeding, the surgery team did tell us that we need to be on the lookout for ear infections, as Brady’s nasal cavity is essentially “open” since there is the hole in his mouth. Also, when he spits up, the milk sometimes comes out of his nose as well as his mouth. Poor little thing! 🙁
While this was not news we were expecting and I was originally very frustrated, we are so thankful that this is something repairable! We won’t need to meet with the surgery team until Brady is about 6 months old (assuming he is gaining weight properly as determined by weekly weight checks), when we will probably then discuss the timing of his surgery. We have been told they usually shoot for 8-12 months of age, so they can repair the cleft before the big speech explosion. The hope is that the repair will be successful before it can negatively affect Brady’s speech development.
And since we’ve talked a lot about our little man and his cleft, why not leave you with a picture of our handsome fella!?? Happy Friday!
**Disclaimer: I am in no way endorsing Medela breast pumps or bottles, but only showing you what we are using.
erin says
aw, sarah! so glad you found a way to make breast feeding work for you. i know it can be a challenge in an ordinary situation, so i can only imagine trying to accomplish it with a toddler running around and under brady's circumstances. i commend you for being so committed! good luck on his impending surgery; i am sure everything with work out fine.
Kristin says
Sarah
I am sorry you have had some frustration. I have that pump too and it worked great…but yes having that as your only method of feeding would get tough! I will be praying for you!
Also there was a blog I followed a long time ago and their daughter had the same thing…although I think hers maybe was even more of a full cleft. But none the less – I know she had surgery and she was doing great after…I will try and find that info again and see if I can get it to you…just as another point of reference!!
Take good care of yourself and I hope your afternoon goes better than your morning! 🙂