As most of you already know, we found out at our 20 week ultrasound that our baby will be born with a cleft lip and cleft palate. Since then, we have received an incredible amount of support, love and words of wisdom from everyone we have talked to and want to start by thanking you each and everyone one of you. We really feel blessed to have such amazing people in our lives! With that said, we have decided that this blog will be the best way to communicate to all of our friends and family through the birth, appointments, likely multiple surgeries and more. We'll start this first post with a little background and where we are now...and then check back in about 3 weeks (baby's due date is March 18th) for another post after the baby is born!
What we know:
Through an ultrasound, our doctors were able to determine that the baby has a cleft lip and cleft palate. Technology is pretty amazing! We don't want to bore you with all the medical terms but if you are interested in learning more, visit The Cleft Palate Foundation. There are a few different types of a cleft lip, and the doctors have determined that our baby has a left side unilateral cleft lip, which basically means that the skin from the lip to the nose on the left side of the baby's face is separated. We won't know more about the cleft palate until the baby is born, but this is an opening on the roof of the baby's mouth where the two sides did not join together. Good news is that both the cleft lip and palate are completely repairable by surgery!
We feel very blessed that based on all the current information we have, the baby is otherwise completely healthy. Clefts can be related to additional genetic disorders, some of them very scary, so we had to have an amniocentesis to test all of the baby's chromosomes to rule out any abnormalities Most of the time the cleft lip is an isolated condition but there is a 7-35% chance where other serious problems occur. After a LONG 2 weeks of waiting for these results, we found out that everything else looks normal and healthy and of course, we couldn't be more happy about this! Truly, thank God!
 |
| Cleft Lip |
 |
| Cleft Palate |
What we don't know:
The sex! Somehow, through all the of the many ultrasounds and even driving around with a file the doctor said was "gender stamped," we have been able to keep the sex a secret! Just the way we want it!
Our next steps:
We had a consultation at the Lucile Packard Children's Hospital at Stanford a couple weeks ago and have decided that would be our first choice for surgery. We were very impressed with the center and it's staff and feel very comfortable with our next steps. They have an entire center dedicated to cleft and craniofacial surgeries, you can check out by clicking here.
About 1-2 weeks after the baby is born we will take a day trip to the surgical center where the actual surgeon will have the chance to meet the baby and assess the cleft lip and palate in person. From there, we will schedule the first surgery for the cleft lip which will most likely take place 2-3 months after the birth date. The surgeons recommend waiting this period of time to ensure the baby's facial tissue has finished developing, which will help with long term results and to decrease scarring. Then the baby will most likely have the second surgery for the cleft palate sometime between 6-18 months of age. We really won't know more about the second surgery until after the first.
Stanford also has already supplied us with some special bottles we will use to feed the baby. Basically, they have longer nipples than a regular bottle to help with adequate suction and avoid taking in too much air.
That's about it for now! We can't believe this baby will be here in 3 weeks or less but of course we are so excited. William is also thrilled to become a big brother - he told us he is excited to have the baby be his "neighbor" in the room next door. His prediction is that the baby is going to be a girl and has picked out some interesting names, most of which are characters from Thomas the Train! We'll see ;)Thank you again for all the wonderful love and support!
Lots of love,
Kristin, Scott and William
Love you Scotty, K and William :)
ReplyDelete