I have so much to say about my pregnancy, my delivery, and how wonderful life with Evan has been these past two weeks, but before I get to those things, I want to tell you all something that we have not been extremely verbal about until now. Many of you may have noticed in a few of the pictures that we have posted on Facebook or Instagram that Evan has a cleft lip. We found out about Evan's lip during my 20 week anatomy scan back in June. Being our fourth baby, I didn't really expect the appointment to go any differently than my previous three, so Jonathan stayed home with the other kiddos while I went to have my ultrasound. After about an hour of checking on our little man, the ultrasound tech finally got around to scanning Evan's brain and face. He was very low in my pelvis during the ultrasound, so she was having trouble getting good pictures of his brain, but finally got to see all that she needed. Finally, she got to his sweet face and profile but said she was having trouble getting the shots she needed because his umbilical cord was right in front of his face. Within a minute or so, my eyes seemed to focus in on Evan and I saw it. I said, "Is that a cleft lip?" "It is," she said with a sympathetic, kind tone.
A few minutes later she came back with my OB to confirm the diagnosis. The rest of the appointment is kind of a blur, but I remember that I held it together pretty well and just kept trying to remind myself that the baby was healthy. All things considered, a cleft lip is not life-threatening and is usually fixable. Through teary eyes, I said this to my OB. She nodded in agreement, then looked at me and said, "That's true. But, it's your baby. You always want everything to be perfect for your baby." I called Jonathan from the operatory and told him the news. His response was so strong and encouraging and full of faith.
We made it through that first weekend (I found out on a Friday morning). Our emotions ran the gamut as we learned more about the condition, we learned how much we actually DID NOT and COULD NOT know about the extent of the cleft, and we told our family and closest friends. Honestly, we cried a lot that weekend. We took turns being the weak one and the strong one. We talked to the kiddos about the baby's "Boo Boo." But most importantly, we named our baby during those days. Up until that time, we had trouble deciding on a name, but after his diagnosis, I told Jonathan that he needed a name. I needed to be able to call him by his name, to pray for him by name. Evan was one of the names on our list and it was the only name on that list that had the perfect meaning: God is gracious. Evan James, God IS Gracious. He graciously gave you to us. He graciously made you in my womb. He graciously brought you into our family. And He graciously cares for you and takes care of you and loves you.
After those first few days, I came to the conclusion that I could not live in the sadness that I had over the weekend. I did not want to continue on through the next four months of pregnancy with a sense of fear, anxiety, sadness, or any other emotion that would rob me, rob our family from the joy of this upcoming new life. We were having a BABY. A son! We had so much to rejoice over and be thankful for and we had so much to celebrate.
It's true, we knew very little about the future. Even with several ultrasounds, we were not able to tell if Evan's cleft was just his lip or if it extended into his palate. We would not know until delivery. In August, we met with the Cleft Team at Knoxville's Children's Hospital to consult with them about Evan's case and to learn about what the future held. We instantly fell in love with the nurse practitioner who coached us on the worst-case scenarios, what to expect, how to feed and how not to feed. She reassured me over and over that there was nothing I did or did not do to cause this to happen. She told us how much we would love Evan's smile with his cleft lip and how we would cry when time for surgery because that particular smile would never be again. She gave us bottles and special nipples and taught us how to feed him if his palate was involved. We talked about the possibilities or impossibilities of breastfeeding a baby with cleft palate. She gave us her personal cell phone number and made us promise her we would call her from the delivery room and said to call her any time of day if we have questions or difficult feedings or anything. She spoke with such confidence of our surgeon's abilities and put so many fears at ease. We met the surgeon, Dr. R, and learned about the schedule of surgeries depending on the severity of Evan's case.
Here is what we did know: Evan has a unilateral (one side) cleft lip. It is on his left side, and from the ultrasound pictures, we were almost certain it was "complete" which means it extends up into his nostril. When Dr. R looked at Evan's pictures, he seemed pretty confident that his palate WAS involved. We could be looking at up to three surgeries within the first few years (one at 2 months, one at 6-7 months, and one later down the road). We walked out of there with lots of information and a feeling of blessing and confidence in the care we would be receiving.
The remainder of my pregnancy was filled with craziness: I failed my glucose test, was on watch for preterm labor, placed on restrictions, etc. I basically lived at my OB's office. It seems like every time I walked in there something else came up. The biggest concern was that I was showing signs of preterm labor beginning around 24 weeks. I had weekly ultrasounds and biophysical profiles of Evan to make sure he was growing well and that my body was behaving itself. We had goals of making it to 30 weeks, then 32 weeks, then 34, then 36 weeks. Then, around that time I started dilating and the doctor was certain I would have Evan any day.
HA! My prayers from the first sign of preterm labor was that Evan would stay in my belly as long as possible so that he could be as big and healthy as could be. I knew he would likely have a very rough road ahead of him, so we didn't need to add difficulty breathing or low weight to be additional trouble. At 38 weeks, 5 days, Evan finally decided it was time to come out. The Lord graciously, faithfully kept him growing in my belly for longer than anyone expected.
Evan was born on Wednesday, October 16, 2013 at 1:54 pm. He came out big and healthy and screaming like a hornet. I saw him and was instantly in love with him. He weighed 7 lbs., 2 oz. and measured 19.5 inches long. Jonathan immediately turned into the dentist that he is and began to scope out the extent of the cleft. We could immediately see his lip, but after quick inspection we discovered that his palate was complete. There was no cleft. Also, usually when there is a cleft lip, the gum line is also involved with a cleft but Evan's was complete. His lip, while cleft, was NOT complete like we suspected. It does not extend up into his nostril, but stops a few millimeters below his nose. We were told that if his palate was involved there was no way I could nurse him. If it was just his lip, it would be questionable because many times suction is not possible. Jonathan called Judy (our lovely nurse practitioner) and filled her in on what we knew and she told us to go ahead and try nursing. I had nursed the other three, so she told me to treat Evan just like I would my other babies. We will see how things go.
Our days at the hospital flew by, and Evan was a rock star! He began eating like a champ and had minimal weight loss in the hospital. Everyone was so kind and encouraging and seemed to be as smitten with him as we were. We came home that Friday, and the past two weeks have been a blur. Mostly, I am soaking up time with my little man, trying to cherish every little sound, every little first. In these two weeks, Evan has grown to 7 lbs, 13 oz. (he gained nearly a pound since his first pediatric appointment last week). We have scheduled surgery for mid-December, which Dr. R believes will likely be the only surgery Evan will require.
Whew, I know that is a lot of information to catch up on, but more than anything, I want to communicate that Evan is an answer to prayer and is a testimony to the kindness and greatness and graciousness of God. We have had so many friends and family praying for us and praying for this baby, and the Lord has blessed us. Even if Evan's condition had been the worst-case scenario, I believe that God is faithful and kind and great. I know had it been worse, that He would have given us the strength and might to care for Evan and our other three children. He would have carried us through those difficulties, and He will carry us through the rough days ahead.
I feel like there is so much that the Lord has taught me, has taught us through these past several months. He has taught me about fighting anxiety, trusting in him, letting go of things that I cannot control, praying for and fighting for peace, receiving help and care that previously in my pride and self-sufficiency I may not have received. He has brought Jonathan and I closer together. He has allowed sweet conversations between us and our children. And I know that what the Lord has started He will complete. There are still lessons to be learned here. Lessons for us, lessons for our children, lessons for Evan. But so far, the most resounding lesson we've seen is that God is gracious to His children and to those who cry out to him for help and mercy.
Here are some pictures of our sweet boy. I cannot tell you how much we love him. I adore his precious face, his sweet mouth, his cleft lip. It is who he is and we adore him. We prayed for this baby, and the Lord gave him to us. We are so thankful for him! I cannot wait for you to meet him.
3 comments:
Casey, my friend...I pretty much cried through this whole thing. Those tears covered pretty much every emotion imaginable for you and your boy...and were also in response to how the Lord used this to speak to me. Thank you for sharing this!
Thank you for sharing your walk with the Lord and the birth of Evan. Your testimony and your openness will enable many others to also be encouraged in the Lord during whatever trials occur in their own life. I can't wait to meet Evan and share the joy and testimony that the Lord is sufficient for ALL our needs!
He is so sweet Casey! Thanks for sharing "your story" and the God-glorifying way you walked through the second half of your pregnancy with Evan. It builds my faith to see how God answered your prayers for him!
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