The Surgeon

At 26 weeks pregnant we were able to meet with Dr. Yu, a pediatric plastic surgeon specializing in craniofacial defects. During our appointment we were given the game plan for Reid's surgeries and we received a lot of information regarding what to expect when he is born. Here is a condensed version of the information we were given.

When Reid is born either everything will go well and we will be discharged home to follow up with Dr. Yu within a week or Reid will have difficulty feeding to the point that the doctors are concerned. If the latter is the case he will be transferred to the neonatal intensive care unit for monitoring and feeding tube placement. His surgery schedule from there will be as follows:

2 months old: Reid's first surgery: a preliminary lip adhesion to begin correcting his lip

6 months old: Definitive lip repair, at this point Reid's lip will be completely repaired, though is palate will remain open

12months - 18months: Palatoplasty - at some point during this time frame Reid's palate will be repaired. The goal during this period is to have Reid's palate corrected as early within this time frame as possible because this is a crucial period in his speech development. Once his palate is repaired he will begin working intensively with a speech therapist to ensure he learns how to make sounds correctly so he can be understood as he begins talking.

7 years: Alveolar bone graft - bone will be taken from Reid's hip and placed in the gum ridge of his mouth. This will allow space for Reid's permanent teeth. The Children's hospital of Pittsburgh explains it this way, "Some children who are born with both a cleft lip and a cleft palate also have a problem with the alveolar bone, which makes up the gum ridge or front portion of the roof of the mouth. The alveolar bone is a thin layer of bone that forms the sockets around the roots of the upper teeth under the gum tissue. When there is a cleft in the alveolar bone, it means there is a fistula or hole from the mouth to the nose. This cleft in the bone and gums prevents teeth from growing properly and the floor of the nose from developing normally. The alveolar bone graft repairs the hole in the gum ridge and stabilizes the bone arch, providing better support for the base of the nose and new bone for the roots of the developing teeth to grow into. The surgery usually is done when the child’s permanent canine teeth are three-quarters formed."

18 years: Jaw surgery - There is roughly a 20% chance that Reid's top jaw will not develop properly, which will make it appear as though his bottom jaw protrudes. This can be corrected in one of two ways: he may be fitted with an orthodontic device to essentially pull the top jaw forward, or he will have to have jaw surgery to correct his jaw and ensure proper alignment.

20 years: Nasal correction - At around 20, once his face is fully developed Reid will have his final surgery to correct his nose. With cleft lip the nares of the nose are often flattened which can create cosmetic issues as well as issues with breathing. Once his face is completely developed he will have his final surgery to correct the flattening of his nares and ensure everything is symmetric.

Throughout all of his surgeries Reid will be followed by and work closely with a speech therapist, an orthodontist, and an ENT. Kids with cleft palate often have issues with recurrent ear infections which could result in permanent hearing loss. In an attempt to prevent any hearing loss/catch hearing loss early before each surgery his hearing will be evaluated. Once he is under anesthesia an ENT will evaluate his ears, and if necessary tubes will be placed in his ears.

The surgeon concluded our appointment by telling us he has three goals. His goals are that by 20 years old Reid will look like everyone else, speak like everyone else, and hear like everyone else. It will be a long road but we are confident that each surgery will go well and Reid will have a happy childhood. 

It took me several weeks to come to term with the fact that Reid would be born different, and to be honest, some days I still struggle to accept it. After all, no one wants to hear their child will have to undergo multiple painful surgeries just to be able speak, eat, and hear normally. On the days I struggle I have to force myself to remember two things. First, with the exception of his cleft lip and palate, Reid is otherwise healthy. All of his organs appear to be normal and functioning properly, and to our knowledge he does not have any other genetic conditions. Our son's condition is not life threatening or permanent, something not all parents are able to say the same. Second, God has a plan for our son and for us. The day after we received Reid's diagnosis I read John 9:2-3 which says (2) "Rabbi," his disciples asked him "why was this man born blind? Was it because of his own sins or his parents' sins?" (3) "It was not because of his sins or his parents' sins," Jesus answered. "This happened so the power of GOD could be seen in him." I truly believe with all of my heart that in the end, God will use Reid's diagnosis for HIS glory, all we must do is have faith and trust in Him.

In Phil. 1:4-6, Paul writes, "In all my prayers for all of you, I always pray with joy ⁵ because of your partnership in the gospel from the first day until now, ⁶ being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus." God has begun a good work in our lives and in Reid's life and He will see it through to completion.

The Specialist

Soon after our anatomic sonogram we were referred to a maternal-fetal specialist to find out the extent of Reid's cleft. Based on the original ultrasound we thought Reid would have a unilateral cleft lip, and they were unsure about the condition of his palate. Our appointment with the specialist revealed instead that Reid has a bilateral cleft lip as well as a cleft palate. In a nutshell this means three things: Reid will have difficulty feeding once he is born and require have to undergo more surgeries over a longer time span and I am at a higher risk for premature labor.

Once Reid is born he will most likely not be able to breast feed because he will have difficulty creating the necessary suction. The Cleft Palate Foundation explains it this way, "A baby born with cleft lip and palate, or cleft palate only, has an opening in the roof of her mouth—between the mouth and the nose. This prevents her from making the suction or vacuum, which is needed to pull milk from the nipple. As a result, even though a baby with a cleft lip has normal sucking and swallowing reflexes, she needs special bottles and nipples to allow the formula to flow without the help of adequate suction. During a feeding, formula may come out of the baby’s nose. This is called ‘nasal regurgitation’. The baby may also swallow too much air while feeding". Essentially, we will have to buy special bottles (which of course aren't sold in stores and have to be ordered online) and he will require smaller, more frequent feedings. If he still isn't able to gain weight properly through bottle feeding, a tube will be placed through his nose, down into his stomach, and he will require tube feedings until he is able to get enough nutrients from bottle feedings.

The good news is that as of our last appointment with the specialist on August 17th my amniotic fluid levels are normal and Reid's heart, lungs, and kidneys look great. 

The Diagnosis

The morning of July 1st I had a 10am appointment with my OBGYN. We were scheduled to have our anatomic sonogram that morning, and while we already knew the baby's gender I was so excited to see him on the ultrasound screen again. Normally, Kyle doesn't go to my OB appointments since the wait is usually several hours long and my appointments only consist of getting weights, measurements, and a quickly listening to the baby's heart using a doppler. However, today we were actually going to see the baby, so of course he got off work and met me inside the office waiting room. As we sat in the waiting room we had no idea our lives were about to change again.  We went into the ultrasound room and the ultrasound tech went through body part by body part. Here's the baby's head, his face, his arms, legs, kidneys, stomach, bladder, heart, spine, and so on. She printed off a few photos and sent us back to the waiting room to wait to be seen by my doctor. It was at that point I told Kyle to go ahead and go back to work, as there was no need for him to stay for the rest of the appointment. As I waited I excitedly began sending photos of our sweet little boy to everyone along with the message that everything was perfect and we were expecting a very healthy little boy. Around 11:40am I finally went in to see the doctor. After the usual exam, he had me come into his office to go over everything, just like he does at each appointment. As my doctor began flipping through the photos he said the words I will never forget "It looks like your baby has a cleft lip, do you know what that is?" I'm pretty sure at that moment my heart hit the floor and time stood still. I knew what a cleft lip was, I'd even taken care of kids with a cleft lip in the hospital, but at that moment all I could think about was "MY baby has a birth defect. Is he going to be okay? What did I do wrong? Did I cause this?" The words played over and over in my mind as I tried to get my new mom brain to turn off and my nurse brain to turn on. I didn't say much over the next few minutes as the doctor tried to assure me everything would be fine. I left the office as quickly as I could, avoiding eye contact with everyone and trying not to burst into tears. I barely got the front door open before I began sobbing and once I made it to my car I quickly dialed Kyle's number. When he answered all I could get out was "He has a deformity. The baby . . . he has . . . a cleft lip".

The rest of the day was a dream-like blur. One minute I would be fine, the next minute I would be sobbing uncontrollably. I had tried so hard to have a healthy pregnancy and do everything right, and yet somehow my child ended up with a birth defect. I grieved for my son, for the fact that he wouldn't be born "normal", I grieved knowing my infant would have to undergo surgery. I sobbed thinking about people staring at him when he's born, wondering if he would be self conscious about his baby photos because of his lip. I kept telling myself it would be okay, that I should be grateful that he was otherwise healthy, but the moment you find out something is wrong with your child it is hard to keep that perspective.

The Beginning

After much consideration I decided to start a blog to keep everyone updated on our son, Reid. 

On March 17, 2015 as I stood in our master bathroom staring at a little pink plus sign I knew our lives would never be the same. Just a month before our third wedding anniversary Kyle and I found out we were going to be parents, something neither of us expected for a long time. We were excited, scared, and completely unprepared for journey God had in store for us. Over the past few months I have spent countless hours reflecting on how our lives are changing and through it all I see God's hand at work.

If you haven't heard our story yet, here's a quick timeline to bring you up to speed. 
March 4th - I was offered a full time staff nurse position in the pediatric ER
March 17th - We are going to be parents!
June 13th - It's a BOY!
July 1st - Our anatomic sonogram and the first time we heard the words "your baby has a cleft lip" . . . and in that moment everything changed again.