Monday, July 22, 2013

Our Cleft Birth Story

The morning of July 4th, 2013 I woke up around 5:45 having real labor contractions but they wouldn't regulate or stay constant. I timed them all morning before deciding they were probably just going to fizzle and went about my day. We fed the kids lunch, put them down for naps and I took a nap myself. When I woke up, the contractions were back and a little more consistent but still not in any sort of pattern. We watched some TV together as a family before getting ready to go to my parents' BBQ. We packed all our bags in the car just in case. Once we got to my parents' house, we did a little more walking and the contractions were sticking around. After a couple of hours, the contractions were about 7-8 minutes apart. We ate dinner and I sent Jason outside with the kids to do some fireworks since I figured we would be going to the hospital later. Minutes after sending them outside to play, my contractions went to about 3-4 minutes apart. Since we had an hour drive to the hospital, we had to leave as soon as possible. We unpacked the kids' stuff and headed to the hospital. 

We finally made it to the hospital and my contractions were still about three minutes apart. We got admitted and I was hooked up to the monitors which meant I had to stay in bed. I was 6cm dilated, 90% effaced and it was about 10:00 pm. I asked the nurse if I could get in the birth tub which she had to get orders for. I worked through the contractions which were miserable when I couldn't get out of the bed. 20 minutes went by before she got the orders approved for me to get in the tub. By that time, I had no desire for the tub. I was focusing on getting through the contractions one at a time. The nurse was busy getting the room ready when I told her I needed to push. She had to check me again and I was complete. I said out loud "I KNOW! That's why I'm going to push NOW!" She called the on call doctor to let him know I was ready to push. I did a practice push which made the baby crown and she called the doctor back again and told him to hurry but I couldn't wait. I pushed on the next contraction and his head was out. The nurse got on her phone AGAIN and called for "back up". Jason sprung right into action and helped me deliver the baby while the nurse fumbled with her phone and tried to get gloves on. I felt the next contraction start, waited for the urge to push and he was born. Henrik Alexander was born at 11:39pm on July 4th. He weighed 7lbs 15oz and is 21 1/4" long. His birth was a beautiful, unmedicated birth and Jason got to deliver the baby like we had hoped he would. 

The resident, OB, and three different nurses all confirmed that our son's palate was intact! I was in complete shock and so thankful. He latched on and started breastfeeding right away - he was a better breastfeeder than my other two, non-cleft babies were. I was exhausted but just kept looking at him in amazement - he really was perfect. His lip was absolutely beautiful! I looked at his face and felt as if I had known him my whole life - this was my Henrik : ) I immediately started dreading the day when he would no longer have his sweet lip. We finally got settled into our recovery room around 2:30 am. I let the nursery take Henrik for a bit so I could get some sleep because I was absolutely exhausted. It was so hard for me to fall asleep because I just kept thinking about my sweet little boy. I finally drifted off around 3 and woke up around 5:30 unable to sleep so I called the nursery and had them bring my little boy in. He kept me company while my husband slept. I felt ready to sleep again around 7 before being woken up by the pediatrician at 8. He was seen by just about every member of our cleft team between 8 and noon and also had his pictures taken and his hearing tested - it was a busy morning!

I was so happy when my parents came in with our two oldest. My two year old daughter ran over for big hugs. My four year old was a bit more hesitant but so happy to finally meet his little brother. Our oldest immediately asked about his brother's lip. We had tried to prepare him to see the cleft but seeing pictures is different than seeing it in person. We just re-explained that his lip didn't grow together but that the doctor would repair it in a few months. That seemed to answer his curiosity and he went on with his day, snuggling his little brother.

Meeting with the surgeon and end of pregnancy

We scheduled the initial consultation with the surgeon for right around 34 weeks pregnant. When the day finally came, I was anxious to meet him. I had heard great things about him and his team and was particularly looking forward to seeing some before and after shots of his prior patients. As we were sitting in the waiting room, I was looking around and it seemed like a regular pediatrician's office. I picked up a pamphlet from the table next to me which was when it hit me like a ton of bricks - this doctor was a surgeon. My baby would, at a very young age, be put under anesthesia and would undergo surgery. I almost lost it. I obviously knew the procedure for fixing a cleft lip but it was at that moment when I realized MY baby would be going through all of that. It was a bit sobering. Upon meeting the surgeon, I was put at ease. He's a younger man with seven children of his own. He told me that he understands the emotions of putting your child through surgery - He treats every patient as if they were his own and makes sure to get the best results possible on the first time. We also met with the nurse practitioner on the cleft team who showed us the before and afters (which were remarkable) and talked to us a bit about feeding after the baby is born and post surgery. I left the appointment feeling like we were in very good hands.

As I was going through the last trimester of my pregnancy, our son's cleft remained at the front of my mind, yet it became a non-issue at the same time. What I mean is that I was constantly thinking about his cleft - yet the worry was subsiding. I constantly wondered what his cleft would look like and hoping breastfeeding would work out. My husband and I would try to talk about names for the baby but I felt like I couldn't decide on one because all I could think about was making sure his health was unaffected by his cleft. His cleft became all I thought about when baby was the topic.

At my 32 week appointment, my OB told me he wanted me to start going for weekly Non-Stress Tests (NST's) because cleft affected babies sometimes have difficulty swallowing and cycling fluid causing a build up of fluid. I didn't like the idea of constantly being monitored - having a more hands off view of pregnancy, labor and delivery, I felt like by having weekly NST's that we were just looking for something to be wrong. I went to my first NST which went great and baby was looking good.

My last few weeks were physically uncomfortable. I continued working out everyday which I'm so glad I did as it gave me a little bit of "me time" every day and helped me prepare for labor. But I was also exhausted and ready to be done. I passed the time by deep cleaning and organizing our house, taking our older kids to the pool and day dreaming of our sweet little baby soon to come.

My last OB appointment was on July 3rd - my due date. My OB was out of the office so I saw one of the nurse practitioners. Baby's growth was right on track and I was looking good. I was already dilating so I asked her to strip my membranes and see if things would go anywhere. As my husband and I were on our way to pick up our kids, my mother-in-law suggested Jason take me out for lunch since I would be having a baby any day and "I deserved it" (being treated to lunch). Over lunch, I had a mild panic attack realizing that our new little one would be here soon and that all the mystery surrounding his cleft would be revealed - could we successfully breastfeed? Would his palate be affected after all? Would he be healthy? I confided my fears in my husband who helped me calm down and realize that whatever was going to happen would be exactly how things were supposed to go and that we would make it through just fine. Jason was never worried through this whole process and I envied him for that. I feel like it was my fear that drove me to do all the research that I had done over the last few months and I felt better prepared for it. 

Follow Up Ultrasound

1 week after our anatomy scan finally came and we had our follow up, level 2 ultrasound to give us more answers about our son's cleft diagnosis. Of course, our lovely neighborhood weather man was predicting a huge snow storm for that day. The weather was the least of my worries for that day. We got the call the night before that our son's school was canceled in anticipation of the snow storm which was the first time in a week that I was nervous about the possibility of my appointment being canceled and having to wait longer. I woke up Thursday morning and called the office as soon as they opened to make sure they were going to be open and they were. It started snowing about 20 minutes before we left and it was really coming down! We started on our drive and the roads were covering quickly. The closer we got to the office, the better the roads got so I figured the storm wasn't going to be so bad.

We got to the office and learned that we were going to be the last appointment for the day because of the weather. We went into the ultrasound room and got things started. After getting the initial measurements and drilling the tech with a million questions that she wasn't qualified to answer, we started looking further into his cleft. We confirmed a unilateral cleft in his upper right lip. The tech tried and tried to get a definitive shot of his palate, but we could only get shots that were "just ok". The tech felt comfortable saying the palate was intact as did the perinatologist but I was still nervous as clefts can go undetected via ultrasound - especially the soft palate since it's not a bony structure.

Despite not having a set-in-stone answer, I felt better and made it through the ultrasound with very few tears. Our drive home was a nightmare because of the snow storm - we had to pull over constantly to clean off the wiper blades and cars were sliding off the road left and right.

After that ultrasound, we were scheduled for monthly ultrasounds to monitor the cleft situation and continue to get a good shot of his palate. At our next ultrasound, we met Karen our care specialist who scheduled and coordinated all of our appointments - she was such a blessing to me. The first thing she said to me was "I want you to know that this is not your fault. There is nothing you could have done to prevent this and we will make it ok." Her words were so kind and genuine - I always looked forward to seeing her at my appointments.

Every ultrasound after that point was very much the same as my first follow up - always "just ok" palate shots but never anything great... until one of our last ultrasounds. The perinatologist came in to do the last part of the ultrasound and our little stinker gave us one glorious picture of his hard palate which looked intact. Despite having our first amazing look at the roof of his mouth, I was still skeptical and couldn't say that his palate was unaffected for fear of letting my hopes get too high.