About me,  Babies + Toddlers,  Family,  Holidays + Traditions,  Our PRS + NICU Journey

Josie’s First Birthday Party and Cleft Palate Repair Surgery

October was a BIG month for our family. We threw Josie’s first birthday party at our house at the beginning of the month, then a few days later she had palate repair surgery to close the cleft in her palate. We had been anxiously anticipating these two events for literally an entire year. It was completely exhausting, but we are so happy that we have come this far.

Birthday time!

The first thing we tackled was Josie’s birthday party. It was a big success in my book. Everything turned out just the way I hoped it would, and so many of our favorite people gathered together to celebrate Josie’s first year of life. 

The theme of the party was classic Winnie the Pooh. As always, I got 90% of my ideas from Pinterest. I’m pretty proud of how well it all turned out – no terrible Pinterest fails for once!

We had a ton of yummy food and drinks, and Josie got to taste cake for the first time ever! (She much preferred her Great Grandma Anna’s macaroni salad, though – she would eat eggs for every meal if she could.)

I didn’t really have an “itinerary” for the party because I prefer things to be relaxed and casual. I had a few games and activities planned for the kids just in case it rained. However, luckily, the weather was beautiful so all the kids spent the day in the pool. Meanwhile the grown ups hung out inside and just spent time together.

Josie also got lots of amazing gifts, including beautiful clothes, toys, gift cards, and even a gorgeous play kitchen. She is such a loved and blessed little girl! 

Waiting for surgery

As soon as the party was over, it was time to get ready for Josie’s palate repair surgery. This was her third major surgery in under a year. When I was pregnant I never imagined I’d have to hand my baby over to a surgeon so many times. It really never gets easier. But Josie always handles it like a champ. The hardest part for her is probably not being able to eat before surgery! She gets hangry!

Edgar, my mom, Josie, and I arrived at the hospital at 8:30 am for check-in, with surgery scheduled for 10:30 am. We had some time to kill beforehand, so we had to come up with some creative ways to entertain Josie and keep her mind off her empty tummy. She managed to take a quick nap, Grandma Lisa entertained her with an inflated rubber glove, and a nurse even popped in to blow some bubbles for Josie. 

Finally the moment came where the doctors and nurses had to carry my little girl down the hall into the operating room – without me. She was upset at first but calmed down quickly. I think it was harder on me. 

Waiting for news

We went back to the waiting room for the hardest part of the whole day – the waiting. Waiting while your kid is in surgery really sucks. There’s no other way to say it. Our hospital thankfully uses an app called EASE, through which a nurse can send us updates. We were already familiar with this app because we used it throughout Josie’s NICU stay. It’s really a lifesaver for stressed out parents of hospitalized kids.

Thankfully, Josie’s palate repair surgery went very smoothly. Her ENT placed ear tubes in her ears first, then her craniofacial surgeon closed her cleft. The whole surgery took around 2 hours, although they kept her in the recovery room a bit longer until she started to wake up. 

After surgery, the nurses wheeled Josie out to meet us in the hall on the way to her hospital room. She looked tiny and groggy in her big hospital crib. I felt so happy and relieved to see her awake with her beautiful eyes open.

Finally we made it to the room where we’d be staying with Josie overnight. That’s when Josie really started to feel the pain, and she began to cry inconsolably. Cue the morphine!

Overnight in the hospital

It was a long night for everyone. Originally we hoped Josie would sleep in her crib with one of us sitting in the recliner next to her. Josie had different plans. 

Because she was so disoriented and uncomfortable, Josie would only sleep if she was in her mommy’s arms. For a while, I tried to sleep in the recliner while holding her, but I was so scared I’d fall asleep and drop her or yank out her IV! As a result I didn’t sleep much and I was pretty miserable for the first few hours.

Eventually we had the night nurse move Josie’s IV closer to the visitor’s cot so that Josie could sleep with me while daddy slept in the recliner. After that, we were all finally able to rest for a while – in between nurses coming in to give Josie meds and check her vitals, of course. (Side note: that’s actually the first and only time I ever co-slept with Josie. She slept in a bassinet when she came home from the NICU and now sleeps in her own crib.)

Aside from the pain, Josie’s biggest issue was that she was hungry. She didn’t want to drink or eat anything because her mouth hurt, but she hadn’t had any food since the night before surgery, so she was obviously starving. 

Luckily I had brought some chocolate pudding cups with me in anticipation of this exact problem. Nobody can resist chocolate! I gave Josie a taste of the good stuff and she ended up scarfing down three whole pudding cups, along with some formula and pedialyte dribbled into her mouth.

After she got some food in her belly she was a different baby. She started to dance and smile again. It was a relief to see the old Josie shine through. As soon as the doctors saw that Josie was eating and drinking, we were able to go home. Everything got so much easier at home. 

Of course, I know this isn’t the experience that everyone has after palate repair. I consider myself and Josie very lucky. I had been bracing myself for days or weeks of screaming and sleepless nights. But kids are so resilient! 

Home at last

My top priority for our first few days at home was to stay on top of Josie’s pain meds. I did so by setting an alarm on my phone to go off every three hours, even overnight. This really helped to keep Josie’s pain in check so that she could sleep and recover without being miserable. 

She was back to herself by the second day after her surgery, eating tons of baby food, sleeping all night (between meds), and playing with toys like nothing had even happened.

I can’t believe how strong Josie is. She’s such a happy, brave baby despite all the difficulties she’s been through. I’m so proud to be her mommy.

2 Comments

  • Raeanna

    hello, I just wanted to say that I appreciate that you share your journey as well as your daughter’s, through all of this. My daughter was born with PRS and it hasn’t been anything short of scary and constantly turning to God. I have found your blog and it really encouraged me and helped to not feel so alone because PRS is so uncommon. I’m praying continually for you and your family as your daughter grows. She is a cutie and so strong.

    • Elizabeth

      Hi Raeanna! Thank you so much for your comment. I remember how scary it was when Josie was first born and I found out she had PRS. I had never even heard of this condition before my daughter’s birth. I’m so happy that my blog could provide some help and comfort to you. I will be praying for your daughter as well. Please let me know if you have any questions. You can reach out to me here, or send me a message on my Facebook or Instagram. <3

      Elizabeth

Leave a Reply

Your email address will not be published. Required fields are marked *