The First of Many

At 4 months old, we took Maxine in for her first surgery. I say "first" because this is just the beginning. She will have several surgeries over the years. And depending on how her palate and gums develop as she grows, she could have surgeries numbering in the double digits. Nothing will prepare you for the emotions of sending your child into the operating room. I'm not sure I can accurately describe it. But I know fellow parents who have had to walk the same road know exactly what I am talking about.

I didn't cry too much when we handed her to the anesthesiologist. She was sleeping sweetly, all swaddled up. She barely flinched as I handed her over. I think that made it better. Knowing that she was already sleeping before they put her under general anesthesia made me feel better. The waiting was the hard part. Time passed at a glacial pace. Even with the phone calls from the operating room to update us didn't seem to help the time pass more quickly.

We started chatting with fellow parents in the waiting room. It was incredibly sobering to be in a children's hospital. The atmosphere is heavy. We were all in the waiting room, trying to keep our brave faces on. Meanwhile, our most precious cargo was in the care of the team of surgeons. We passed the time with conversation with fellow parents and loved ones. But we were all thinking of our own little ones in the operating room. At last our surgeon came out to bring us back to the recovery room. A wave of relief, and strong emotion rushed over us as we made our way to greet our baby. There were more tears at this point than when we handed her off.

The first 20 hours afterward were brutal. She was in so much pain, and was crying and whimpering the whole time. The nurses kept up with her pain management as best they could, but our poor little 4 month old just didn't understand why she was hurting so much. The next morning, less than 24 hours after her surgery, we got a wonderful ray of hope through all the struggle. We were out getting breakfast, and when we came back in she was talking and cooing at the monitors. The screens that beeped with her vitals were very fascinating to her, and she was having little conversations with them. And then she saw us and smiled at us. Her brand new smile, courtesy of the wonderful medical technology of our time. Suddenly everything was okay.

The next 2 weeks were not easy, but every day she was a little better. And she smiled more every day. That made it infinitely easier to get through those difficult post-op days. Nothing hurts more than seeing my baby in pain. But nothing inspires me more than seeing her bravery through it all. We are gearing up for her second surgery in a few days. And I know that she will show us again just how brave and strong she is.

-Sarah

The Hardest Part

I have been avoiding writing this post. The first several months of Maxine's life were the absolute hardest. In no small part because of the NAM (Nasal Alveolar Mold). I still do not how I got through it. I was pushing back the emotions and stress and trauma of it all. Stuffing those feelings down so I could do what I needed to do to get through each day. And writing this post means that I have to remember it all. I have to confront just how hard it was during those months.

We chose to use this orthodontic mold because it would help shape her gums and nose. And I would absolutely choose to use the NAM again. The benefits were incredible! The change in her cleft was almost beyond belief. She started with a 13mm gap in her gums, and by the time of her surgery, her gums were touching. The benefits of the NAM were undeniable.

But it is still one of the hardest things I have had to do. Every day, I removed the tape, and removed the NAM. I had to clean the NAM, but also clean out her mouth. I will spare you the nasty details about that part. Then I had to put denture adhesive onto the NAM, and tape the NAM back into her mouth. Every week I had to change the base tapes on her cheeks. No matter how much Vaseline I used, her cheeks would be red and inflamed. And her skin would usually rip in a couple of places. She really hated those weekly tape changes.

In addition to the daily cleanings, every 1-2 weeks her NAM was adjusted. If you have ever had braces, you can probably relate. Her whole mouth would hurt, and sometimes her gums would even develop sores. Even though she had a very mild personality as a baby, she was in pain. And she cried a lot after those adjustments.

Day after day, I had to change and clean her NAM. Day after day, I worried about her weight gain because she wasn't eating well because of the pain. I wanted it to be done. I was actually looking forward to her surgery so we could be done with the NAM. It was the most emotionally and physically exhausting 4 months of life. I was counting down the days for it to be over. And by the time it actually was over, she was out of the tiny infant stage. That wonderful stage of sleepy baby snuggles was taken over by the NAM. By the time the NAM was done, I had missed out on that stage.

Even with how hard it was, and how much I feel that I missed out on, I am glad that we chose to do the NAM. Her scar from her lip repair is barely even visible now. Because she went through the NAM protocol, her gums weren't straining at scar. The NAM was the hardest part of her infancy. And it was also one of the best medical decisions we made for her.

-Sarah

You Are A Good Mom

I have been holding onto this post for a while now. Debating whether or not to post it. I originally started this blog post with a long backstory of our particular struggles with Maxine and her feedings. And how much pressure I felt to continue in a feeding method that was just not working for us. But it felt too soap-boxy. Too ranty. And that's not what I want. We all get enough shaming and judgement from the world for just about every decision we make as a parent. You don't need me ranting too. I don't want to be just another voice adding to the noise.

We need a lot less judging, and a lot more supporting. We need a lot less pressuring, and a lot more understanding. We need a lot less shaming, and a lot more love.

So with that in mind...

To the mom who breastfeeds her baby: 

Breastfeeding is not always easy. Sometimes it is downright hard. You are making a hard decision to keep breastfeeding through the difficult times. You are feeding your baby. And you are a good mom.

To the mom who exclusively pumps:

Pumping is exhausting. You are making a hard decision to continue pumping even though you have wanted to quit so many times. You are feeding your baby. And you are a good mom.

To the mom who supplements with formula:

Going back and forth between two forms of feeding can be hard. You are giving your baby the benefits of breastmilk, and the necessary calories and benefits of formula. You are feeding your baby. And you are a good mom.

To the mom who exclusively uses formula:

If this isn't what you wanted, the guilt can be so hard. And if this is what you chose to do, the shaming can be intense. You are making a decision to do what works best for you and your baby. You are feeding your baby. And you are a good mom.

To the mom who feeds her baby through a feeding tube:

I know that this isn't what you wanted. You are making a hard decision so your baby can thrive. You are feeding your baby. And you are a good mom.

And to all the dads out there who are either primary caregivers, or standing alongside and supporting these hard feeding decisions:

You are supporting your family. You are feeding your baby. And you are a good dad.

Please don't let the surrounding guilts and pressures overwhelm you. Instead, ask yourself these questions:

Is my baby fed?

Is my baby happy?

Is my baby thriving?

Regardless of which feeding method you are using, being able to say "yes" to these questions is truly what is best.

-Sarah

Unconditional

It has been awhile since my last post. Life, the holiday season, and my Etsy shop kept me busy. But I still want to go back and write down these posts. If not for myself, for Maxine when she gets older. And maybe someone else will find something useful in these posts.

Today, I want to talk about my other children. How do you prepare your six year old and even younger siblings for a new baby who will have a very visible birth defect? How do you explain what a cleft lip and palate are? I asked my cleft mom support group these questions. They recommended the wonderful book called Jack's New Smile. It is a story about a big sister who has a new baby brother, Jack. Jack has a cleft lip and palate. My six year old could read the book and understand what a cleft lip and palate meant. He knew that she would look different. He knew that she would need surgeries. He has absolutely no shyness, so he would tell complete strangers about her special bottles that she would need. He also read the book to his sisters. While my son may have understood well, I doubt my daughters knew or understood any of it.

My son was super sweet when he came to visit us. His first words were "she's so cute!". I got misty-eyed. Whatever else was going through his mind, she was his baby sister, and he loved her. I don't know why I was so worried about his reaction. He didn't have a concept of conditional love. He just knows love. He has taught me a lot about love before. And this time was no different. He loved his "Baby Max". No qualifiers, no conditions. She belongs to us, and we love her.

When we brought Maxine home, we began the introductions to her sisters. My 4 year old has always been a little mama herself. She has such strong maternal instincts. She was absolutely tickled pink that she had a new baby. She still thinks that Max is hers, and is hardly ever from her side. She poked at her cleft out of curiosity. But she was "her" baby, and that was all that mattered.

I was most worried about my 2 1/2 year old. She was only mildly curious at first. I think she was more concerned about being displaced as the "baby" of the family. But a few days later, she realized just what fun a new baby could be. She also poked at the cleft. My girls were very curious about it all. But I never once had to worry about what they thought about her. She was their sister, and new "baby doll". And they loved her.

I am glad that we bought that book, and talked with our son about it. But I should not have been so concerned about their reactions when meeting her. When we brought Maxine home, it was just about her. Not her cleft, not her struggles. Just her, a new baby to love on. My children inspire me. They are all so young, but they know more about love than I gave them credit for. They have shown what it means to love unconditionally. I want to be more like them.

-Sarah

Peace

After we received the cleft diagnosis, new stressful issues never seemed to stop coming. In February, we received the cleft diagnosis. In March, I was diagnosed with preeclampsia. In April, we moved to our new home. It was actually our 6th move in 3 years. Let's just say that I am looking forward to not moving again for a while. Then in May, I was going in for twice weekly appointments for non-stress tests due to my preeclampsia. Then there were the appointments to meet with our craniofacial team, and the ENT. My calendar was pretty full. And my anxiety was at an all-time high. To say that I was stressed would be an understatement.

With the cleft diagnosis, we needed to keep Maxine gestating as long as possible to give her the best chance to thrive. Especially since we were expecting feeding issues as a result of the cleft. But my preeclampsia would necessitate an early delivery. Thankfully, we were able to keep my blood pressure under control, and I made it to 38 1/2 weeks before delivering.

With all of the stress in the months leading up to the birth, I was expecting a lot of anxiety the night before our scheduled delivery. My previous 3 deliveries were less than ideal, and for some of them, very traumatic. And with all of the emotions of a cleft diagnosis, I was obviously expecting to experience much more anxiety during this delivery than in previous ones.

Baby #1 was a 29 hour induction turned caesarean section. And then 2 days after the birth, my husband had to leave for a week of training for his new job. That whole week I was in a haze that never really lifted until my husband returned. I am so grateful to my mother-in-law, and my mom staying with me that week.

Baby #2 was a plan B caesarean because I was 42 weeks with exactly zero contractions, and zero dilation. Baby girl showed zero signs of wanting to come out. In hindsight, that was a pretty good indication of the personality my determined little girl would have. The night before delivery was spent pacing, crying, bouncing on my birthing ball, trying anything and everything to go into labor. All to no avail. Since I barely slept the night before, the "Golden Hour" following delivery was a blur. I was falling in and out of consciousness and had my husband do the skin to skin because I felt like I was going to drop the baby.

Baby #3 was probably the most traumatic. I finally went into labor on my own. But an infection had developed in the amniotic sac, and my baby girl was showing signs of infection. It was another caesarean, this time with my baby being whisked off to the NICU. It was almost 3 hours before I could see her. And even then, I was vomiting on the way up to the NICU because of the nausea from my very recent surgery. She was in the NICU for a week. The hardest week of my life. My fellow NICU moms can understand just how hard it was, even just for the 1 week she was there.

With these 3 past deliveries, and especially the most recent one being so traumatic, I was experiencing a lot of anxiety. I requested prayer from a moms group on Facebook. Those wonderful ladies have been there for me for years, and through some of the harder times, like the deliver of baby #3. The night before delivering Maxine was very different from what I was expecting. Instead of the anxiety that had been building for the past few months, I felt peace. While my husband barely slept because of his own worry, I slept. And I slept well. I have no explanation for it. It is beyond all explanation.

We arrived bright and early, just before 6am for pre-op. And then just after 7am, I was taken in to the operating room. Once everything was ready, my husband came in. I remember him remarking that I seemed to be at peace. And I was. And it was not the sheer exhaustion that I experienced with baby #2, or the special cocktail of meds that they give you. I was well-rested and truly at peace. Just 6 minutes after beginning the surgery, I saw my Maxine. After a few minutes of observation and cleaning by the nurse, my baby was placed on my chest for the remainder of the surgery. This never happened with any of my previous caesarean deliveries. Before, I had to wait to hold my babies. Instead, I held my baby and she started nuzzling me and immediately stopped crying. We snuggled while I was being stitched up. It was the absolute best half hour of my life.

It was the most beautiful delivery. The most stressful of pregnancies, ended with my best delivery experience. It was a healing delivery for me. Three previous traumatic deliveries were suddenly behind me, and I no longer felt the pain of disappointed hopes and traumatic experiences. How is this possible? How was my best delivery the one where I delivered my cleftie? Once again, I have no explanation for it. All I know is that we had so many people praying for us. Our church was praying for us. Our families and friends were praying for us. My mom friends on Facebook were praying for us. Complete strangers on my cleft support group were praying for us. And I felt it. I was overwhelmed by such peace as I had never known before. And the part of me that had been struggling ever since that first caesarean section 7 years ago, was healing. Finally healing.

I am crying while I write this. Not because I am hurting. But because I am filled with so much gratitude for my Maxine Joy. She has healed my heart. If only I had known just how amazing her birth would be. If only I had known just how much peace and healing the occasion of her birth would give me. I pray that I will have a better understanding of what trusting God really means. God took a hard diagnosis, and a stressful pregnancy, and turned it into one of the most beautiful experiences that I will cherish forever. I pray that the next time I am faced with something hard, that I will remember my Maxine, and what God did for me.

-Sarah

Give Yourself Time

The week that we found out about Maxine's diagnosis was a difficult one, to say the least. My usual form of grief is to hide inside myself, grieve internally, and stuff it all down so nobody can see my weakness. But for some reason, this time was different. I gave myself permission to grieve, and I grieved openly. I cried a lot that week. When my husband was trying to be strong, probably for my sake, I cried. I grieved the pain that she would endure. I grieved the lack of a normal infancy and childhood that she would experience. I grieved the multiple surgeries that she would need throughout her life. I grieved the comments and looks from strangers that I knew would come. I grieved the bullying that she will likely experience later in life.

I grieved a lot of things that week. And I think that was one of the best things that I could have done. Because when there were no more tears, I started to focus on the things I wanted to get ready for her. And I began to actually get excited to meet her, and to get all those wonderful newborn snuggles. I think that if I did not take the time to grieve, I would have had a harder time getting excited for her birth.

I also joined a cleft support group on Facebook that week. It is a wonderful group that not only shares great information about a cleft diagnosis, but these parents have been exactly where I am. They, complete strangers at the time, were there with words of encouragement for me. And now I am sharing with mothers who are asking for help after getting the diagnosis for their little one. My advice to these mothers is this,

"Give yourself the time. You are stronger than you feel right now."

Strength does not make you immune to feeling vulnerable. Strength means that when you are feeling vulnerable, you step up and do what you need to do for your child. Feeling vulnerability does not equate to weakness. In fact, it takes a great deal more strength to carry on when you do feel vulnerable.

I gave myself time, and I found strength all around me. I found it in the repeated promises in the scriptures. I found it in my husband, who held me and let me cry. I found it in my 6 year old son who was there that first day and saw my pain. He did not know exactly what it was about, but he came over to me and put his hand on my arm to let me know that he was there. I found strength while playing the piano for our church services. I found strength from complete strangers on the internet. I found so much more love and strength than I ever imagined. I even found more strength in myself than I ever knew that I had.

Give yourself time. You are stronger than you know.

-Sarah

Brightest Joy

On January 30th, 2019 we found out we were expecting a little girl. We already had one son, and two daughters. We were very excited to add another little one to our family. We had been so sure that it would be another boy, so we picked out the boy names we loved and talked about the girl names only a little bit. But much to our surprise, the envelope contained 2 pink bracelets stating "It's a Girl!". So much for my intuition about gender. In fact, I think that out of our four children, I was correct in my guess only once. I would not recommend taking me to the horse track, or to Las Vegas, because you would be sorely disappointed in my guessing skills.

After the initial shock wore off, we began thinking of girl names again. For some reason, the name we had talked about several months earlier did not seem to fit now. However, we loved the middle name we chose, Joy. It is my sister's middle name, and her daughter's middle name as well. Joy was staying as her middle name. But what about her first name? Suddenly, my husband asked, "what about Maxine?" His great-grandmother was named Maxine. She was a sweet lady, with a lot of class, and more than a fair amount of spunk. I was still reeling from the gender reveal, but something about it just seemed right. We could call her Max. I was starting to really like it. I called my sister to ask her opinion. After talking it over for a little bit, she liked it too. Suddenly, it was all starting to feel very real. Not too much longer after that, we texted our families our choice of name. Maxine Joy. My husband's Grammy was just over the moon that we chose to name our daughter after her late mother. Maxine the elder never met any of her great-grandchildren. I was pregnant with our first child when she passed away. It still makes me a little misty to think of it. But now we could honor her by naming a child after her. It was definitely the right name for our little one.

Maxine is the feminine form of Maximus, or Maximillian. It means Great, or alternatively, Bright. She was now our Great Joy. Our Bright Joy. In the coming days and months, we had no idea just how much these names would mean to us.

On February 4th, 2019 our world was rocked. Even more so than when we found out we were having a girl, and not a boy. My obstetrician called with the results of the anatomy scan we had the previous week, and our Maxine Joy was diagnosed with a cleft lip. Later scans would reveal that her gums and palate were also cleft.

In the overwhelming grief that followed, I clung to her name. I grieved the pain and the surgeries that I knew she would have to endure. But I clung to her name. It hurt so badly to think of my child having to go through these pains and struggles. But no matter the struggles, she would be my Joy. When my mind threatened to think that having another child was a mistake because of her diagnosis, I made myself say her name. Maxine Joy. My Greatest Joy. My Brightest Joy. As I write this, she is now four months old. And I can see now even better than before, that she is my Joy. She has a strength about her that is inspiring. And I want to share her story and her strength with you. Maybe someday I will be as brave and strong as my tiny daughter.

-Sarah