Our biggest surprise of 2009 was finding out we were pregnant! OOOPS!! Some things are just meant to be…and God definitely had this pregnancy in our plan…even if we didn’t! J Aside from being sick pretty much ALL day long, everyday during my 1st trimester, things were great. It was very much like my first pregnancy with my daughter Caydree, who is nearly 4.
All of our doctor visits were going well, and we were able to find out at our 20 week ultrasound that we were going to be having a boy!! We couldn’t have been more excited, one of each sounded just perfect. So the day after our 20 week ultrasound, I was a bit surprised to get a phone call about a follow-up the next week. The nurse explained to me that they couldn’t really get a clear picture of the face or the heart. At her words, I knew immediately that there was something going on, so I started to ask her a bunch of questions…which led her to tell me that my baby boy may have a possible cleft lip and/or palate. At this point in the conversation it got a little foggy, but I’m pretty sure her next words were, “…don’t worry too much, maybe it is a mistake and they really just couldn’t get a good picture…” Too late, I was already swimming in a sea of worry. The shock of this lunchtime phone call, and the uncertainty of what was to come weren’t really a good combo to get me through the afternoon with my 3rd graders…not to mention the whole week I would have to wait until my follow-up for more answers. So we waited, and I started my research.
Of course, we prayed the whole time that it was a “mistake”, but as I spoke with my amazing nurse practitioner the next day, I pretty much knew. Next came the slowest and most stressful week of my life. Sadness, guilt, fear, anger…the rollercoaster of emotions were all there, even without really knowing what was going on yet. Finally we had our appointments with the geneticist and perinatologist. The genetic counseling offered us statistics, more uncertainties, and the option of having an amniocentesis. The perinatologist gave us more answers, with a higher level ultrasound and fetal-echo, to check the heart. Confirmation, yes, our little boy would be born with a bilateral cleft lip, and it did look like the palate was involved. The heart on the other hand looked fine…thank God! Everything else in the ultrasound appeared to be “normal” (a word I’ve almost come to hate), but they still suggested we have an amnio to rule out the countless syndromes and chromosomal disorders that are sometimes related to clefting. We had discussed this possibility before, and decided to go ahead with the amnio, as frightening as the results might be. If you know me at all, I’m a planner, so regardless of the results, I had to know so I could be prepared to welcome our little boy in whatever manner necessary. The amnio itself was scary, but the 2 weeks of waiting for results were agony! I consumed myself with more research, preparing myself for the worst, while hoping for the best. More news via telephone…our results were in and they were all normal. Thankfully this meant that the baby should be fine, other than the clefting, and it appeared to be an isolated case, meaning that only the lip and palate were involved, and for an unknown reason.
Knowing that your child will have a birth defect is hard. Finding out that the birth defect is correctable and not life-threatening is a relief…but the realization that the road ahead will be different and more difficult than expected is still a big pill to swallow.
At 31 weeks pregnant I was fortunate to still be seeing my regular nurse practitioner and OBGYN, as the perinatologist doesn’t need to see me for anything else. J I had a nonstress test every week starting at 32 weeks because my doctor knew I was a complete psycho about my amniotic fluid levels. Babies with cleft palates sometimes have difficulty swallowing, so increased amniotic fluid can be one of the complications during pregnancy…but things looked good.
Life is unpredictable, but we are ok with that. I am also a firm believer that God only gives you as much as you can handle, so I tried to take that as a compliment. J
Calder’s actual “birth story” is LONG, I like to talk…so take a look at my blog if you are interested in all the details! Recapped, short version:
Big sister Caydree was born after a 6 hour labor (mostly at home), less than an hour at the hospital, no meds and 3 pushes. 2nd baby, piece of cake, right? Easier, faster…you know what they say. Well, Calder decided to do just the opposite, and wound up being delivered via c-section on 9/27/09, after 15+ hours at the hospital, pitocin, epidural, almost 3 hours of fruitless pushing, and lots of decelerated heart rates. He was a whopping 8 lbs and entered the world with the cord tightly around his neck! I’m still thankful for the horrific c-section experience just because of that!
As luck would have it, the retired lead doctor from the hospital’s cleft team just happened to be working that weekend, and was able to be there for our delivery. So she was able to immediately assess Calder and let us know that he was doing great. She also got the ball rolling with all of the other doctors and components of the team. God had been very present for me throughout this pregnancy and experience, and I know He was hard at work putting everything into place during and after the birth as well! While we were in the hospital we were able to meet with almost all of the amazing doctors who will be taking Calder through his journey of surgeries, therapy, etc. Our worries and most of the unknowns were replaced with answers, timelines of what to expect, and the reassurance that we needed to start feeling like we would be able to handle things.
The initial ultrasounds led us to believe that Calder had a bilateral cleft lip and palate, meaning both sides of his lip underneath his nose, and both sides of his palate would be affected. It is the more severe type of cleft, and although we were worried, it is still absolutely “fixable”. When he was born, we were surprised to find that his cleft lip is unilateral and only affects the right side. The palate is a bilateral cleft, but it’s a little different. On the right side of the palate the cleft is complete—meaning that the separation runs the entire roof of his mouth, even through the gum line. On the left side, the cleft is incomplete, and only affects the back part of the palate.
We were very concerned about feeding, as this is usually the biggest challenge for cleft babies initially. With help from the occupational therapists who specialize in feeding, we left the hospital with Calder eating much better than we anticipated…we really are fortunate. I mourned the loss of breastfeeding, and pumped until just this week…just one month shy of his 1st birthday. He’s been on solids for quite some time now…we had weight issues early on (I swear he’ll love the ‘skinny genes’ later in life!) but we’ve stayed on the growth chart…barely. Babies are so resilient and adapting…it has been truly amazing to just watch him figure out what works! His lip repair was in March, when he was 5 ½ months old, and I desperately miss his big wide grins. The very best thing I did was take pictures… hundreds and hundreds of them…they are my favorite memories of such an uncertain time in our lives. Here is the link to my blog post just before his surgery.
His palate surgery will be in early October, just after he turns one! After that, hopefully a break until he is older…a bone graft to fill the space in his gums, when his baby teeth have fallen out and the permanent teeth are ready to come in. Scattered in there could be other things like nose and scar revisions…depending on growth, but we are cautiously optimistic! It was not the road we planned to travel, but we are enjoying our incredible little boy. He’s been walking since June, is into everything, and is finally starting to make more noises, so we are on our way to “talking”! He is nothing BUT personality, and his laugh is infectious…I’m sure you’ve gathered by the length of this…if you’ve even read it all, that I love my little man more than anything. There is something so dear and special about the “extra” bond I have with him…”cleft mommies” you know what I’m talking about, and I wouldn’t trade it for the world.