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