Welp, with only 10 weeks left until I’m considered full term, I think it’s time we let you in on a little update on Baby Guard #2!
I think I’ve tried to write this hundreds of times already, and I know I rehearse it in my head over and over every day but I’m feeling a short and sweet vibe right now so here goes:
At our 12 week ultrasound we discovered that although baby is growing strong and healthy, he or she will be born with a cleft lip and palate. The other times I’ve tried to write this post, I’ve done so in a more narrative way, describing how the moment of hearing this news felt and the emotions that followed during those next days and weeks. To be honest, most of it was quite a whirlwind and it was hard to put into words, as each day, minute, second felt different. For me, being told the news that our miracle will be born with a birth defect, feelings of grief, anger, bitterness, and sadness swallowed me up and beckoned me to climb back into a pit all too familiar.
I am grateful for the pruning and refining God did with my heart through our years of grief and infertility. Isn’t it amazing to see the fruit of learning to let God dig in and uproot the ugly parts of ourselves? I have allowed myself to feel the depths of my anger and sadness over the fact that my child will be born with a funny little smile, that it will endure at a minimum three surgeries (two being in it’s first year of life), that it will wear a scar on the most looked at part of it’s body, that it could face bullying or ridicule as a child, that once again I will not be able to breastfeed my child, that once again we don’t get a “normal” story.
By God’s grace, He has not allowed me to stay in those places of bitterness long, as He has reminded me over and over and over and over again that this baby is a miracle, that He is knitting it together in my womb, that he or she is an answer to a prayer I’ve cried for many years, and that if my hands are closed to what He is going to do in and through this then I will be missing out on Him fulfilling his promise that “…in all things, God works for the good of those who love him…” Romans 8:28.
So what does all of this mean? We intentionally waited to share this news until we met with baby’s surgeon so that we could 1) have all the correct and appropriate information to answer any questions and 2) give ourselves time to process and feel comfortable with this unique situation our family finds ourselves in! Here are some quick facts about what the heck it even means for baby to have a cleft lip/palate and how our next year or so will look:
Cleft lip and cleft palate comprise the most common birth defect in the United States. One of every 600 newborns is affected by cleft lip and/or cleft palate. (Who knew?! We certainly didn’t!)
A cleft lip is a separation of the two sides of the lip. The separation often includes the bones of the upper jaw and/or upper gum. A cleft palate is an opening in the roof of the mouth in which the two sides of the palate did not fuse, or join together, as the unborn baby was developing. Cleft lip and cleft palate can occur on one side (unilateral cleft lip and/or palate), or on both sides (bilateral cleft lip and/or palate). (Baby Guard will be born with a unilateral cleft lip with some palate involvement, though we won’t know the extent until birth).
Cleft lip and cleft palate are congenital defects, or birth defects, which occur very early in pregnancy. The majority of clefts appear to be due to a combination of genetics and environmental factors. (So here’s where Ryan and I look at each other and shrug because we do not have any family history of clefts and there is nothing I did during the pregnancy to “cause” it…this was HUGE for me to hear! Doctor calls it an “anomaly”. Sweet.)
A few specifics:
- Baby will not be able to exclusively breastfeed (ugh, grieving that one again…). So I will put in the hard work of pumping while having a newborn and 1 year old…you can go ahead and start praying for that!
- Baby’s “cleft team” will be the doctors at St. Joe’s, though surgeries will take place at Phoenix Children’s. We really like our surgeon already!
- Baby will get it’s first retainer at about 2-3 weeks old! Ha! It will work to mold the mouth and begin to pull the lip and palate together even before surgery. It will also help shape the left nostril which will most likely have some flattening due to the pull of the lip tissue.
- Baby’s lip will be repaired at 3-4 months and is an outpatient procedure
- Baby’s palate will be repaired around 8 months and will most likely be just one night in the hospital
- Baby will then need one more surgery around 7-8 years of age for a bone graft in it’s upper jaw between it’s baby teeth falling out and adult teeth coming in (another outpatient procedure)
- Baby will possibly need a surgery around 3-4 years of age to lengthen palate depending on how speech is going
- A few areas cleft palate can affect are feeding issues (baby will use special bottles to eat), ear infections, and speech development issues. Not to mention, some possible dental/orthodontic needs later on.
Ok, so I hope I’ve kept this sweet because I know I didn’t keep it short! All in all, the past 15 weeks have had their good days and bad days. Thankfully, the good outweighs the bad and we’ve been able to talk to some folks in our community who have gone through this and have affirmed that what we’re feeling is normal, but encouraged us that the joy that’s to come when we meet our baby will far surpass any fears we may have right now. This little one is not a cleft with a baby, it’s a baby with a cleft and it will still have tiny little fingers and toes, chubby little thighs, a soft little belly, and good grief is this child going to have the brightest blue eyes! It’s still perfectly precious and a complete gift from a Father who doesn’t make mistakes 🙂
And now, I finally get to share my most favorite ultrasound picture of them all!!
This is back from 17 weeks but I just fall in love all over again when I look at it. Gah, that’s our baby!!
P.S. If you want to read further about cleft lip/palate or have any questions I didn’t answer here check out these reputable websites: