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!