Seven hours.
It only took 7 hours after Brody was born for the doctors and nurses to decide that he needed to be put in the NICU.
We knew this was a possibility because of both his cleft lip and palate and also his chromosome deletion. He was born on a Friday and we knew by Monday after a series of ultrasounds that he was only going to be in the NICU for feeding difficulties.
PRAISE JESUS! Prayers had been answered and we were going to be leaving with our baby as soon as he started eating from a bottle!
By Monday we were only on our 2nd bottle type and supplement feeding through a NG (nose to stomach) tube.
**Cleft babies have different bottle types to choose from: The Haberman, The Pigeon Nipple, The Dr Brown’s Specialty Bottle, and breast feeding to name some. All of these bottles/ nipples have different advantages to different types of cleft affected babies. Cleftline.org’s website is a great resource for buying your first bottle.**
I was in great spirits knowing that Brody would eventually get it! I mean, how hard could it be to latch onto a bottle or nipple? We were only on our 2nd bottle type and we had plenty more to go through.
By the next weekend we had gotten nowhere. He had been through all of the bottle and nipple types and shown very little improvement. Brody was taking as little as 5ml to 10ml over a 30 minute period.
At this point I remember saying, this is the best place to be. If we went home, we would be sent back to the hospital for Brody failing to thrive. We were in the right place for us at the time. Plus, as first time parents it was kind of nice having the extra care!
By the start of the next week it was starting to wear on me that Brody wasn’t making improvements with his feedings.
Leaving the hospital without him every night “wasn’t fair”.
I had begun to get frustrated. Frustrated with the hospital staff, frustrated with Chris, and worst of all frustrated with Brody.
I was frustrated that it had almost been two weeks in the NICU and they couldn’t get Brody to eat. It was a cleft lip and palate, not a rare heart defect! Why couldn’t they get him to eat?
I was frustrated with Chris, because he wasn’t as hands-on as I was. This was his son too, and he didn’t seem as eager as I was to change a diaper or to try feeding him.
I hate to admit it, but I was frustrated that Brody wasn’t “getting it”. How hard could eating without the correct anatomy be? How ungrateful was I?
I was able to hold my son every hour of every day that I was at the NICU. So many mothers and fathers aren’t given that opportunity every day due to their baby’s health. So many women go through pregnancy, labor, and parenthood alone. They don’t have that person to help make bottles, make them dinner, or lend a shoulder for you to cry on. Chris may not have been as hands on with Brody at the time, but he was definitely there for me.
And poor Brody… I was blaming him for something completely out of his control. He tried eating from the bottle every single feeding. He was trying, and he was working hard.
Our longer than expected stay in the NICU wasn’t the hospitals fault, it wasn’t Chris’s fault, and it certainly was not Brody’s fault.
It is hard being a cleft mom…but we are all blessed!!! I would not trade my experience for anything! It made me a strong more durable mom! I love my son Corey Matthew….he showed me true patience and Sara you have done an outstanding job! I hope one day to meet you and shake your hand! You and Brody are heros! Thanks for getting the word out!
My youngest child, Samantha was born with a cleft palate that was not diagnosed until after birth. She had an NG tube while in Nicu for three weeks and then graduated to feeding with the Haberman bottle. She used the Haberman bottle until switching to a sippy cup at one year. And she was very particular about the type of sippy cup used. We could only get her to use the Tupperware type cups with the narrow thin spout.
I am a woman that is now 53 years old. I was one of the first tries of repairing the bilateral cleft lip and palate . I have 2 children that had just a cleft of the soft palate and one child 4 hat had the bilateral cleft lip and palate . That one child an I had what was called pits in our bottom lip. When my first 2 children were four and 18 months just before his palate repair . I 2 as offered to see a DNA doctor around the clefts because upon my birth we had no idea what it really was. My children and have a heritary condition called Van Wonder Syndrome . It ranges for a slight difference in the soft palate to the full blow thing of bilateral cleft lip and palate plus the pits. I had baby sat when I was a teenager a child that had the clefts so I knew some what it would be like to take care of my own children . But little did I know that they would try and bottle feed my children in the hospital with as they called it. A special bottle . For everyone one of my children that long nipple with the cross cut in it would make my children chock on it or drowned from so much coming out. I found my oldest who had only soft palate did better with a Playtex nursery nipple with a little bit of a bigger hole in it. My middle n who had the clefts of both lip and palate did best the a regular bottle and a silicone clear nipple that was for a bigger baby. The flow was a medium. My daughter did fine on a regular bottle and nipples. She had only cleft of soft palate . I now have 2 granddaughters . With a 3rd on the way. My first had the full bilateral cleft lip and palate just like her father did. My second grandchild had no cleft at all not even in the soft palate like her mom. We don’t know about the one on the way yet. She is due in april. As difficult as those years we I would not change them. I took my children right out in public upon birth. I did not care what the looked l7ke. Yes they have alot of trouble when young but doing great in life now. It is hard for me to believe that although I did not know what the clefts were called 29 years ago upon the birth of my first child to learn that 7th was heritary in my case.