Thursday, December 5, 2013


In mid-September, I received a call from our cleft team - it was time to set our surgery date. We carefully picked a day and after the phone call, I sent out the text to family and friends announcing the day and asking for prayers. I felt a few tears trickle down my cheeks that morning. I would never dream of denying my sweet little boy the chance to look like everyone else but my heart was aching knowing he wouldn't be the same.

I spent the next few weeks preparing myself, making lists of things to take to the hospital, and taking all the pictures of Henrik that I could. I knew the day would come all to soon... and it did.

The day before was a blur. I was busy trying to get everything ready and prepare my kids for everything that was going to happen. Henrik went to bed on time though he must have felt that something was up because he woke up just a few hours later. Fortunately he was easily soothed back to sleep and  I went to bed. I set  my alarm to get up at feed him at 2am since he couldn't eat past 2:30 (though I let him eat until 2:45). He went back to sleep but woke up at 3:30 - this was by far the worst night of sleep he or I had gotten since he was born. I tried  giving him pedialyte since he could have that until 4am. Yeeeaaaahhhh... since he had never had a bottle, it didn't go well. He just cried and cried and so did I. It was a long night where I only got 2 hours of sleep but many hours of cuddling. I was very grateful for the time I was able to spend with him - just us two.

At 5, I set Henrik in his swing and got myself  ready to go. He only stayed asleep for maybe 20 minutes but there wasn't anything I could do for him. I was miserable. We finally packed up in the car and headed out. We were at the hospital  by the appointed time of 7:30. We got checked in and headed back to the pre-op area. We weighed Henrik and took his vitals. He was surprisingly calm and snuggly. I waited until the anesthesiologist came before I dressed  him in the tiniest hospital  gown I've ever seen. The anesthesiologist was a very nice woman who was so wonderful with Henrik. But she was there - in our room - and I knew what was coming next. She brought in a large, warm blanket and we swaddled him in it. He looked so tiny and helpless! She held him up for Jason and I to give kisses before they walked out of the room and down the hall. I held it together until I watched them walk down the hall with my baby. This was, by far, the hardest thing I've experienced in my life. I broke down. Jason just held me as I sobbed for a good 15 minutes. After I composed myself, I just sat there staring at the wall. Jason went and got some breakfast and I ate and then waited. 3 of the longest hours later, our surgeon came in and said everything went great! He showed us some pictures of Henrik and I honestly don't even remember what they looked  like, lol. The only piece of information that I processed and clung to was that I would be able to see him in recovery in 20 minutes. I was absolutely on cloud nine! My baby was out of surgery, everything had gone great and he was waiting for me!

We got our things together and the nurse came to get me. As I walked into the recovery area and saw my baby, I was elated! I hardly noticed all the wires and tubes - I was finally holding my sweet boy! As the nurse handed him to me, I felt like I was a brand new mom again. I stood there just looking at him, completely unsure of what to do! He was in between consciousness and sedation which he didn't like. They  told  me I could try feeding him which I did and it went PERFECTLY! He latched on and just kept going without a care in the world. Jason was finally brought back to recovery after about 15 minutes and we were moved up to the pediatric floor.

Henrik was noticeably uncomfortable despite the pain meds. He was very sensitive to loud noises which one of his monitors was VERY loud. He wouldn't sleep unless he was being held so Jason held him while I got some much needed sleep. We were supposed to be discharged later that day but Henrik was having a very hard time coming out of the anesthesia. He seemed very uncomfortable and irritable so the doctor decided to keep him overnight for observation. Jason and I slept in shifts and the nurses even pitched in with holding and rocking him so we could both get some sleep - those nurses were absolute angels! Around 11 that night, we had a glorious half hour where Henrik was awake and alert and HAPPY! He was looking around and didn't seem bothered by his IV, lead wires or pain. It was so wonderful to see a glimpse of my happy little boy again.

By the time morning came, he had another episode of contentedness (right when the surgeon stopped by) and we were discharged. We finally got home just before noon. Henrik went down for his afternoon nap like normal and went back to his normal routine instantly.

One of our nurses described our surgery day as a day Henrik will never remember and we'll never forget and truer words have never been spoken. It was such a hard day for me emotionally and physically but Henrik's life is forever changed for the better because of it. We had a couple of weeks of recovery but now, we are completely back to normal. I cannot believe how much we've faced this past year. We've overcome challenges that I never imagined we'd have to face but I am SO GRATEFUL for this journey we've been on. I've learned so much and have a new passion for sharing it with everyone.

I'm so grateful for everyone who's reading or read my blog. I'm grateful that I've had the ability to reach you and hopefully you take something from this. This won't be the end of our story. I'll still continue to post (I've already got a few more posts ready to type but my 4 year old is currently demanding juice) so please continue to visit! I'd love for you share our story in hopes of spreading information and maybe reaching someone who needs to hear it : )

Learning to feed with a cleft

Sorry it's been awhile! Well, honestly, I'm not that sorry. Life has been happening and it has been glorious!

Henrik's birth was amazing and magical. The "baby moon" period afterward was a dream! Don't get me wrong, Henrik was still a newborn who had needs - he didn't sleep as well as my other children (though he did sleep great! Just not as well as I'm used to) and he wanted to eat constantly. I didn't care. My miracle  baby was here and perfect. I remember one morning he woke me up at 3am. He nursed then was back asleep by 3:30. Any normal new mother would have gone back to sleep herself but what did I do? I just sat there and stared at him. For an hour... I couldn't help myself - he was so wonderful and adorable and perfect. I knew he would soon be different and wanted to remember every moment I had with him. Don't get me wrong, the early morning adoring sessions didn't last, but I can honestly say I never enjoyed having a newborn as much as I enjoy my time with Henrik.

We went to his regularly scheduled pediatrician appointments. His pediatrician is the same doctor I saw when I was growing up which is really great. Henrik was gaining weight slowly. His doctor never expressed concern with how he much he was gaining because Henrik was still having plenty of dirty diapers and was growing in length. We met with Henrik's cleft team when he was 2 weeks old which was when we were first met with concern about his weight. He was gaining but at the bare minimum for what was considered acceptable. He was still nursing great but I had noticed that he probably wasn't getting as much milk as I thought. I have to use a nursing aid called a nipple shield when my  babies are first born for several reasons and so I also used it with Henrik. Because of his cleft, he wasn't able to latch onto the shield well causing the milk to leak out of his mouth which was why (I assume) he wasn't gaining like expected AND why he wanted to nurse literally the whole time he was awake. After making this connection and rectifying the situation, Henrik would finally seem to feel full and satisfied. He started gaining better (though still slowly). I was so proud of myself! I saw the problem, fixed  it and made the situation better. Two years of nursing my older children and my doula training were kicking in and I made myself better ; )

I was so nervous about nursing Henrik. I had no idea if I was even going to be able to breastfeed him let  alone how it would go. I was feeling like a failure once I realized there was a problem. I questioned why I was trying so hard and if I was making the right decision. I constantly worried that he was feeling hungry. I worried that maybe my milk wasn't nutritionally sustaining for him since he was the first baby I breastfed after my dramatic weight  loss. I changed how I ate to try to help - I typically eat really well so I  tried adding in a little "junk" with no change so then I started eating foods that were still  healthy but higher in fat and upped my calorie intake. Still no help. After talking extensively with the nurse practitioner on our cleft team, we came to the conclusion that Henrik was just going to be a slow gainer. I still have moments of "Am I doing the right thing? Is he getting enough?" but I am a firm believer that breast is best and have been reassured that he is getting what he needs. It's taken some getting used to (Henrik's growth pattern) but I think we've finally found our niche and we are happily going on 5 months of breastfeeding - yay!

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.

Sunday, June 2, 2013

20 week ultrasound

My 20 week ultrasound this pregnancy fell on Valentine's Day. It was a very busy day! I dropped off my 4 year old at preschool, came home, and started on my lengthy to-do list. We were having my sister-in-law and her family over for dinner after our ultrasound so I had to start making my fabulous dinner of pot roast, homemade rolls, and delicious sides. The day passed semi quickly and before I knew it, we were on our way to the ultrasound. I had been asked at least two dozen times that day if I was excited, and I was, but I couldn't shake a feeling I had been having all day... not an impending doom kind of feeling, but I knew something was off.

We made it to the doctor's office with plenty of time to spare which almost never happens (we're late a lot, lol). The ultrasound tech called us back and we told her that once she got a good gender shot, we wanted to guess before she told us if the baby was a girl or boy. As soon as she put the magic wand on my tummy, we saw our baby's nose and mouth for about half a second before he moved and went face down. In that half a second, I saw the cleft. It was so small and just looked like a dark line on his upper lip. It was such a short glimpse that I kept questioning what I had actually seen. We watched our baby do baby things, got measurements, and got the gender shot - we are having a boy! We were so excited! I thought the appointment was running a bit long and realized the tech was pretty focused on getting a better shot of our son's face which was when I realized my initial thought was correct though she never said anything about it. We finished the ultrasound and went to meet with the doctor for a usual check up. After the appointment, he confirmed my cleft suspicion and referred us to the Maternal Fetal Center of the hospital for a follow up ultrasound a week later.

I left his office in shock. I wanted to call my list of friends and family who were eagerly expecting a call to know if the baby was a boy or girl but I couldn't pick up the phone. I wasn't in despair but didn't feel the joy I was so hoping to. I tried talking to my husband about it but he's so not a worrier. He just kept telling me that everything would be ok and not to worry... but I couldn't help it! We finally made the first phone call to a friend who I knew would be so excited and comforting about the situation and she was. Then I called my mom and my sister in law. The more people I told, the more real everything became.

We got back home and started dinner with my other sister in law and her family where the conversation about the cleft came up. We were talking about cleft lips, palates, what clefts meant, other complications that could come with a cleft... it was an emotionally exhausting conversation for me. After dinner, we all headed off to church for a Valentine's dance which is where it really hit me. My husband and I had gotten into really the smallest disagreement which just pushed me over the edge. I ran outside and just let it all out. I didn't understand how this was happening. I had been having a picture perfect pregnancy, I was doing everything right, we had no family history of clefts. I was frustrated the my husband was so nonchalant about the whole thing. I was worried about my unborn son and how his cleft would affect breastfeeding (something that is hugely important to me). I was worried about other possible complications and future surgeries. My husband held me while I literally sobbed in the parking lot.

I wish I could say that was it, that I was stronger after that moment and was ready to face what all of this meant after that but I wasn't. I still had moments of "why me? why my baby?" I gave myself a day and a half to "grieve" our son's diagnosis. I laid on the couch, watched TV, snuggled my older two kids and just spent time with my family - they were the only people I wanted. I didn't go anywhere or really do anything. I just existed and that was ok. I just needed to process everything and start preparing. Two days after my initial ultrasound I woke up and was ready to move on. I made the choice to start learning everything I could and prepare myself and find out exactly this meant for our family. I posted it on Facebook (people probably thought I had died because I went from talking about being excited for the ultrasound to not responding to anything at all, lol) and started answering the questions that followed.

I scheduled the follow up ultrasound for 1 week from my initial ultrasound and focused on getting to that date to learn more.

Sunday, March 24, 2013

Preparing for pregnancy

I have been preparing for this pregnancy for  over a year. I guess it all started when I was actually pregnant with my daughter in 2010/2011. When I was pregnant with my older son, I wasn't exactly a model pregnant woman - I ate whatever I wanted and didn't work out. I didn't experience any complications however and delivered a healthy 9lb 11oz baby at 42 weeks gestation.

When I was pregnant with my daughter, I was seeing a midwife who helped me understand my nutritional needs better and encouraged me to make better choices for my baby. I ate better during this pregnancy than I did ever in my life and I felt amazing... well, as amazing as a pregnant woman could feel with nausea and constant aches and pains. I was still a lousy exerciser, lol. I again had a complication free pregnancy and delivered a 10 pound baby girl at 42 weeks gestation - my babies just like to hang around! ; )

After I had my daughter, I was already 20 pounds under my pre-pregnancy weight (thanks morning sickness). I kept up my healthy eating during breastfeeding and joined a gym around nine months after she was born. After she weaned, my healthy journey really began to take shape. I worked out harder, ate better and committed to making big life changes. By the end of last summer, I was down 65 pounds from my pre-pregnancy weight with my daughter.

After seeing a midwife, nutrition and a healthy lifestyle became very important to me which was why I was working so hard to better myself.

When I found out I was pregnant, I was absolutely thrilled. I always knew I wanted three children and knowing that our third was on the way was so exciting for our family. I was ready to face the morning sickness I had experienced with my last two and to continue my new-ish healthy lifestyle. To my surprise, the sickness stayed away and I had a happily uneventful first trimester. I was able to get my certification completed to become a Zumba instructor - something I had been longing for!

Overall, my pregnancy has been a dream and I fully believe it is because of the changes I made. I became a better and happier person who was very much looking forward to my final pregnancy journey : )