Cleft Lip Repair (hour by hour breakdown + packing list)

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Hi, everyone! I wanted to share Josiah’s lip surgery a little more in detail for those interested. My hopes with this blog post is to enlighten any of our family or friends family curious about how surgeries go and to encourage future cleft parents/families as they prepare to experience their little one’s first surgery. Below I also added a packing list and tips for any parent of a cleft baby. Please feel free to share this post with anyone you know that may benefit from it.

First a bit of context…

Our son, Josiah, was born June 21, 2019. He was born with a unilateral cleft lip and palate on his right side. We first received care for him at Texas Children’s in the Medical Center in Houston, but after a month in we made the switch to Shriners Hospitals for Children in Houston (also in the Medical Center). At Shriners we were introduced to Dr. Eric Payne, who would be Josiah’s surgeon. Dr. Payne crafted a NAM for Josiah, which he wore leading up to his surgery in order to help bring his mouth/lips in more and lift his nose prior to the operation. Josiah had to weigh at least 12 pounds in order to have the surgery. His surgery was scheduled for October 3, 2019. Dr. Payne and his team would repair his lip, nose, and soft palate, making it a 3-4 hour operation.

Now an hour by hour breakdown..

5:00 AM - I woke up to my alarm going off. Knowing I probably shouldn’t snooze, I did anyway. Eight more minutes wouldn’t hurt. By the second time it went off, I jumped out of bed, calling out to Calvin to wake up and get Josiah ready as I pumped. We decided to stay the night at a hotel near Shriners to avoid having to wake up even earlier and make the 45 minute drive into Houston. I had a specific outfit planned for Josiah. A good friend of mine, Ashley, made Josiah a onesie for his big day that says “I get my forever smile today” with the hashtag #cleftstrong at the bottom. By 5:45 AM we were out of our hotel room and met Calvin’s parents at the elevators to head to Shriners.

6:00 AM - Luckliy, Hilton in the Medical Center was just two blocks from Shriners, so we arrived rather quickly. Before I knew it, I looked up to see Calvin pulling into the hospital entrance and towards the gated parking garage. “Our son has a surgery scheduled today,” Calvin answered the security guard on the other side of the parking garage intercom. As the gate lifted to let us in, I couldn’t believe the day was finally here. This was it.

Calvin parked and before turning off the car, I looked at him, Josiah asleep in his carseat in the back, and I grabbed his hand. “Let’s pray,” I said softly, exhaling a deep breath. Calvin led us in prayer for our son and we got out. It’s safe to say that at this point I realized, I might have over packed for the overnight hospital stay. We did our best to carry everything we thought we would need and headed inside to check in.

6:30 AM - After checking in, nurses led us to the room where he would be prepared for surgery. Josiah needed to be changed into his hospital gown once we were ready. My mom arrived shortly after we did, peeped in to see Josiah, kiss him, and take a final before picture to send to my dad who was in Mexico due to the passing of my grandfather. Calvin then led her to the waiting area on the operating floor where his parents were waiting.

After checking his vitals and signing the remaining paperwork, we would wait in that room for our surgeon to stop by and brief us on what the surgery and entire day would entail. He asked about his night before, as Josiah was to enter surgery fasted. Josiah had breastmilk at 2:30 AM and hadn’t eaten since.

7:00 AM - By this time, while still in the same room, I did my best to sooth him as we waited to be transitioned to anesthesia by holding him and giving him the pacifier because I knew he had to be hungry. He was wide awake, lying on that little hospital bed, gown and all, just looking around at the nurses and monitors.

All that was left to do was to take his NAM out for the last time, clean his mouth out (the denture adhesive for the NAM would leave gunk in his mouth and nose), and get our last snuggles with him in before walking him over to anesthesia. Oh and take our final before pictures, of course.

7:30 AM - A nurse came in to lead us to the room where the anesthesiologist was waiting for us. As we followed the nurse down the hall, Calvin held him. I walked directly behind Calvin, talking to Josiah who seemed pretty content, looking over his daddy’s shoulder.

When we walked into the room, the anesthesiologist we had met the day before at our pre-op appointment stood there with her team. She gave us one last consent form to sign and asked if we had any questions she hadn’t answered the day before. She also asked how Josiah’s night went and asked what time he had his last bottle.


She then said it was time to go back to the operating room. And this time, we wouldn’t be the ones walking Josiah in, they would. With Calvin still holding him, I leaned into Josiah, gave him a big kiss and hug. The nurses awww'ed at the smiles he was giving us and commented on his alertness and great head control.

My only regret was not asking Calvin if I could hold Josiah in my arms one more time before they took him away. As the door closed behind them, Calvin and I exited the room via another door and were led to gather our things and head to the waiting area.

You guessed it, that’s when all the tears flowed. As we walked to the elevator, I just cried and cried. That was hard. I wanted nothing more but to go find him and hold him again. Josiah was now in the care of nurses and doctors, in a room I wasn’t allowed in. Don’t get me wrong, they did a fabulous job and I trusted them completely. But in that moment, all you feel is the separation, and reality sinking in of how the waiting game has now begun.

8:00 AM - We met our parents and headed to the cafeteria to have breakfast. We sat and ate and talked about other things which helped me get out of my head. While our experience at Shriners had been incredible thus far, their coffee options. . . not so much. Calvin and I were tired from the night before and I got little to no sleep, with my mind racing about the surgery. So Calvin ventured out in search for an energy drink and just minutes later I got the first call.

8:27 AM - [1st call]
Shriners had a nurse that would call us every hour once the surgery started to update us on how everything was going. I got the first call at this exact time to inform me that Dr. Payne had just made the first incision, He started with the soft palate. She let me know that it would take him about an hour to repair that and she would call me with another update in an hour.

Once Calvin returned, I let him know what the nurse said and we decided to head back upstairs to the operating floor and get situated in his recovery room. The room included a crib/bed for the baby and a twin size hospital bed next to it since it was sometimes used as a two patient room with a dividing curtain. The nurse that led us to the room told us we’d have the room to ourselves.

So I began unpacking our things and mentioned to Calvin I would be staying in the room a little longer in order to pump and spend sometime praying. I overlooked the Houston Medical Center from our room’s window. In the quiet, I sat there and pumped. I prayed to God and His peace filled the room. Before I knew it, my phone began to ring again.

9:22 AM - [2nd call]
I reached for my phone and turned my pump down. The nurse shared how Dr. Payne had just completed the soft palate repair and that it all went really well. She then informed me that he began working on the lip repair and nose repair. I hung up with her and immediately called Calvin to repeat the message.

Once I finished pumping, I headed back downstairs to the main lobby where the general waiting area was to rejoin our parents and Calvin. My best friend had also just arrived to the hospital and we agreed to meet there. She brought me a Starbucks Cold Brew, that blessed soul. I sipped it as we walked outside on the balcony of that floor and looked out. It was good to breath fresh air and talk to my best friend. Having her there was a great comfort to me.

We headed back inside and just waited. Calvin’s mom reading a book, Calvin conversating with his dad, my mom catching up on emails, Travelle (best friend) and I talking and sharing a bag of popcorn. (Shriners gives out free popcorn to families waiting out in the lobby.)

10:16 AM - [3rd call]
While in the lobby, surrounded by everyone, I get the next call. The nurse repeats that everything is going really well and that Dr. Payne will be done within the next hour. At that point they would come out to get us and bring us to Josiah. I thanked her for her call and hung up. I briefed everyone around me on the content of the call, and we continued to wait together in the main lobby.

. . .

Nearly an hour later, with my back towards the elevators, facing Travelle as we talked, she blurted out “isn’t that Josiah’s doctor?” Confused, I turned around to see Dr. Payne in his scrubs, mask down and around his next, walking towards us, eating a bag of popcorn.

[I want to pause here and say, Josiah’s doctor/surgeon is awesome. I truly believe God orchestrated this entire journey for us to have met him and for him to have been the one to care for our son. He is incredibly knowledgable and passionate about his line of work and genuinely cares about his patients. Dr. Payne and his team have traveled the world to give their time, energy, and skills to operate on those in need of surgeries in countries where appropriate care is not as accessible. Just days before Josiah’s surgery, Dr. Payne had traveled to Africa with a team to perform 34 surgeries in 4 days! It is evident that while he may have a peaceful, easy-going demeanor, he takes his profession and the care of his patients very seriously. So to see him walking towards us, confidently, while enjoying a bag of popcorn after performing a major surgery, is a perfect depiction of him …at least from what we’ve learned about him in the short 3 months we’ve known him. HA!]

Turns out, Dr. Payne came down in search of us. I told him how I was a bit confused since I was told to wait for the next phone call. He then shared how most parents wait upstairs in the operating floor waiting area and when he couldn’t find us there he assumed we were down in the main lobby. Gathered around him, he continued to say that it all went very well and Josiah did great. He mentioned that we could go see him as soon as we were ready because Josiah was already waking from the anesthesia. (The younger they are, the quicker they wake up from it.)

Calvin and I rushed upstairs to the operating floor and just as we exited the elevator, my phone rang.

11:21 AM - [4th call]
The nurse instructed me that Dr. Payne had finished the surgery and Josiah was now in the post-op room, waking up from anesthesia. I told her how we had talked to Dr. Payne already and were on our way there. At that exact moment, the nurse who had walked us to the anesthesiologist earlier that morning found us near the elevators and again, told us that Josiah was awake and probably hungry. So we quickly got a bottle of breastmilk out from the fridge they had it stored for us and followed her to him. My heart raced as we followed.

I was nervous. I was excited.

I was about to see my son in a new way for the first time.

Many say it’s like being handed your newborn for the first time again. And they’re right.

There he was. Josiah with no cleft lip, staring up at us. He looked so different, yet he looked just like the sweet boy we have known and loved this entire time. I cried and cried, to the point of which a nurse asked if I was okay. Of course, I was okay! These were happy tears! These were tears of complete amazement and praise.

We were on cloud 9 and in complete and absolute care mode for our baby as the day went on. It was now time to comfort him, soothe him, love on him, and give him whatever he needed to recover well.

Dr. Payne entered the room not too long after us, in fact, he’s the one who got these pictures of our reaction to seeing our son with his lip and nose repaired for the first time. Seeing him, as many moms and dads do their newborn, with everything enclosed and no cleft.

The nurses around us asked if we wanted to hold him, to which I said YES! So they continued getting as many things off of him as they were allowed to in order for me to be able to sit with him and feed him. They quickly brought out a rocking chair for me, placed it next to the bed, and I sat with a bottle of breastmilk and attempted to give him his first bottle post surgery.

Josiah still had stitches inside of his mouth, some long stitches that came out of his mouth and hung down his cheek, he had stitches on his nose and a temporary nose stent and finally, he still had blood in his mouth. All these factors made this first feeding a bit difficult, not counting the fact that he was swollen, still a bit numb, and had to now re-learn how to feed without the NAM (nasoalveolar molding) which also doubled as an artificial palate for him. (Josiah was also born with a cleft in his palate). He only had maybe an ounce of milk his first feeding.

He cried off and on, we could tell he was still coming out of the anesthesia. Next, they wheeled him into the recovery room and Calvin held him next. After a few more moments with him and another attempt to feed him, Calvin and I wanted our parents to come in and see him. So I headed downstairs to get them as Calvin sat in a chair, Josiah in his lap, a bit groggy and fussy, but comforted.

It was about 12:30 PM or so when our parents and Travelle followed behind me as we walked up to his recovery room. Luckily, there was no limit to the guests he could have in his room, so they would all get a chance to see him with his new smile at the same time. I waited for them to make their way to the chair by the window where Calvin sat with Josiah. With my phone already at hand, I couldn’t help but record the reactions.

No further words are needed right? When a cleft baby journeys through the many surgeries and hospital stays, so do the parents. So does the whole family. We’re so grateful to both of our parents for their love, encouragement, support and care for Josiah, and for us as his parents.

Later that afternoon my siblings came by to visit Josiah and check on us. And eventually, we ate lunch. When you’re in care mode, you really don’t think much about anything else, like food or what time it is. Eventually, all our family and friends headed back home.

Josiah would have an overnight stay as they would continue monitoring him and making sure he ate well before leaving. He was given medication every 4 hours, fluids via an IV, and nurses came in periodically to check his vitals and assist us when needed. We did our best to keep him as comfortable as possible, attempting feeds as often as he’d allow us to. He slept well and eventually took his bottle like a champ.

He slept in a crib, by himself, for the first time that night. Cuddles for Clefts sent us this adorable stuffed animal with a cleft scar for Josiah to have for his first surgery. They also sent us a matching onesie and t-shirts that say “Every Smile Has A Story” which I have pictured below.

I slept in the hospital bed next to him, and Calvin on the chair which pulled out into a bed. Of course, when I say “slept” I mean we tried to rest in those areas when the baby would sleep for an hour or so at a time. It was a long day and a long night, but with items I brought from home, it helped make our stay a bit more comfortable. Shriners and their staff also helped us tremendously. Everyone was so kind and catered to our every need throughout our entire stay.

The next morning, Dr. Payne checked in on Josiah one last time and asked us how his feedings were going. A week from the surgery we’d see him again to get Josiah’s temporary nose stent removed, as well as his outside stitches. He then said that from the looks of it, Josiah was recovering very well and we could be discharged as soon as we were ready. So, we asked to rest for another two-three hours (which was glorious) and after that, we began the discharging process to head home with our sweet boy.

I’ll leave you with more pictures and for my fellow cleft mamas, a packing list and words of encouragement!

Cleft Lip Repair Packing List

  • Diapers/Wipes

  • Zip up or button up onesies/pjs

  • Baby’s bottles

  • Feeding syringe (just in case)

  • A TON of burping cloths

  • Pump/pumping parts

  • Cooler to store breastmilk (if pumping)

  • Formula

  • Bottle cleaning system

  • Soap to wash bottles/pump parts

  • Baby’s favorites: toys, blankets, books, etc.

  • Bed time essentials (sound machine, night light, humidifier, etc.)

  • Bag for laundry (there will be a lot of dirty burp cloths)

  • Snacks for mom and dad

  • Extra pillow/blankets for mom and dad’s overnight stay

  • Phone chargers

  • Change of clothes/pjs for parents

  • Toiletries for parents

Additional tips and encouragement for cleft parents:


1. Plan ahead for someone to babysit, housesit, or dogsit while you’re gone and even possibly for a day or two once you’re back.
2. Consider meal prepping before baby’s surgery so when you come home meal time is less stressful.
3. Order groceries ahead of time to pick up or be delivered at your house once you’re back.
4. Ask for help and accept it when offered.
5. It’s okay to kindly say no to visitors. Your friends and loved ones will want to see your little one’s new smile, but don’t sacrifice your sanity or peace for it. It’s okay to ask for some time before having people over.

It really does feel like taking your newborn home from the hospital for the first time again. You’re tired, the baby is re-learning how to feed, while also tired, uncomfortable, in pain, and probably still swollen. It’s a lot. You will feel overwhelmed. You aren’t crazy or incapable. It’s normal. But you can do this. And your baby will bounce back. Be patient, be loving, be gentle, be kind, be compassionate. Not just toward your little one but towards yourself and each other (spouse or who ever may be helping you).

4 Weeks Post Op!

Josiah, mama and daddy are so proud of you. You are an incredibly brave little boy and we love you so much! God is with you always.

Please continue praying for #JosiahTheBrave. His next surgery to repair his cleft palate will be at 18 months! As always, feel free to leave a comment and share this post. I enjoy connecting with you all!

Thank you so much for reading!

Crystal

MORE BLOG POSTS REGARDING OUR CLEFT JOURNEY:
Josiah’s Cleft Palate Repair | Josiah’s Birth Story | 32 Weeks Pregnant Bumpdate (and a cleft q&a) | The News I Never Expected While Expecting