MORE BLOG POSTS REGARDING OUR CLEFT JOURNEY:
Josiah’s Cleft Lip Repair | Josiah’s Birth Story | 38 Weeks Bumpdate (cleft q&a) | The News I Never Expected While Expecting

It has been over 6 months since Josiah’s cleft palate repair surgery. I know most of you are faithful readers and as I have shared online about my attempts to write this post since, I have shared how there has been a time of processing I’ve needed. However, the time has come to share our personal experience because I know this post has the potential of being a helpful resource for families discovering their baby on the way may be 1 of 700 babies affected with a cleft lip and/or cleft palate.

Josiah’s Cleft Lip Repair blog post where I break down hour by hour our experience has had over 1k views and hundreds of shares. My website’s second most read blog post to this day. The first being this one where I shared about us finding out Josiah’s cleft lip and palate during his 20 week anatomy scan. I don’t say that to brag on myself, rather to reiterate that to me, to testify and share Josiah’s story is something I feel God has called me to do while on this journey with our son. And while my hope is to always leave a family (or friends/loved ones of cleft affected babies) encouraged and filled with hope about the journey, I will not shy away from sharing our experience in complete honesty - including the gut wrenching, the exhausting, and the scary moments.

With that, be advised, that Josiah’s palate repair was the hardest thing we’d done on this journey so far. This read may seem heavy, really heavy. But by the end you, parents to cleft warriors or faithful reader, will find hope. As we have. Because as dark as the night may be, the light always overcomes it.

First a bit of context…

(For first time readers and as a general refresher.)
Our son, Josiah, was born on June 21, 2019. He was born with a unilateral complete cleft lip and palate on his right side. Josiah receives care at Shriners Hospital for Children in Houston (now Galveston). On October 3, 2019, Dr. Eric Payne, Josiah’s surgeon, completed his Cleft Lip Repair and on October 1 of 2020, just shy of a year later, Dr. Payne repaired Josiah’s hard palate and also repaired a micro cleft on the left side of Josiah’s lip. This surgery would be a 3-4 hour operation, like his previous one, since Josiah would also have his ENT put in ear tubes. (A very common need for cleft affected babies.)

In the case you may not know yet what a cleft lip and/or cleft palate is or looks like, I have shared some photos below. Images that demonstrate types of clefts can be seen below. Photos from Better Safer Care website.

Major surgery + COVID…

One last bit of information to set the story up, his palate repair was during COVID so things did go a little differently this time around. To start, due to COVID regulations, Shriners only allowed one parent to accompany each child for any appointments, COVID testing, and surgeries/hospital stays.

Prior to his surgery, Josiah had to first be tested for COVID. If you think it’s no fun as an adult to be tested, imagine for a toddler (16 month old). Need I say more? Luckily, they were fast and after a little bit he stopped crying and we were able to go home. After they ensured it was a negative test result, we moved forward with the scheduled pre-op appointment two days after that.

Pre-op appointments include a general check-up along with a briefing with each doctor that will operate on him and the customary chat with the anesthesiologist. These appointments can be anywhere from 3-4 hours long. Josiah was exhausted by the end of it. But as always, was excited to see daddy afterwards who was waiting for us in the parking lot.

The last thing to do before returning for surgery the next day was to go home, relax, pack up for surgery and hospital stay, make sure dinner was before cut off time, (they go into surgery fasted from food, and can only have clear fluids until 4 AM the morning of) and to give Josiah his customary pre-op bath with antibacterial soap.

Surgery Day:

An hour by hour breakdown…

4:30 AM - I jumped out of bed when our alarms went off and headed straight to the bathroom to get ready. I was nervous as heck. “It’s just gonna be me with him…” I kept thinking as I brushed my teeth. Unlike his first surgery where we got a hotel room in the Houston Medical Center the night before, we stayed at home. We woke up earlier in order to make time for the drive in from Katy. Calvin helped me get everything into the car and I woke up Josiah to get him ready. This go-round our dear friend, Ashley (Welch Creations & Co.), once again made us special shirts for surgery day. Josiah wore one that said “cleft warrior” on the front, while I wore one that said “I’m a cleft warrior mama” and Calvin, “I’m a cleft warrior daddy”. All our shirts had the matching “#JosiahTheBrave” hashtag on the back across our shoulders.

5:08 AM - Quick photoshoot with daddy in our almost bare living room because - oh, wait, I forgot to mention it - we were also putting our house up for sale during this time and had started showing the house (yes, a LOT going on at once, but more on that later)!

5:48 AM - Calvin had to drop us off outside the hospital because he couldn’t even see us off to the operating floor from the hospital lobby. I pulled out my phone once again to capture his sweet words and hugs and kisses for Jo. It’s one thing to undergo this alone as a mama, but in that moment I realized how incredibly hard it must also be to be on the other side of this. To have to sit in a car and wait. Unable to help. To wish you could be there but you can not. You are as close as you can get due to COVID regulations, yet still feel far away on the day your son is having a major surgery. With a final hug and kiss and “i love you”s we parted ways. And in Josiah and I went with all our stuff somehow mounted onto his stroller and my shoulders.

6:00 AM - Josiah and I checked in at the front desk of the first floor, we were then directed to the operation floor where he would be prepped for surgery. This is where vitals are checked, he is changed into his hospital gown, and all the patient id bands are placed on him. Luckily this room had Mickey Mouse clubhouse on the screen to help keep Josiah occupied while nurses and the doctors came in for one last briefing.

7:08 AM - The time had come. Time to hand Josiah off again to his anesthesiologist. They would take him into the OR where I couldn’t go. So while they did allow for me to hold him as we walked down the hallways nearing the double doors that lead further into the operating room, the inevitable hand off was upon us. Josiah was given medicine or “happy juice” to help begin to calm him for the duration of pre-surgery prep. That’s why his expressions seem confused or sad in these photos. I tried talking to him and holding him slightly closer to me just moments before placing him in someone else’s arms. It was my second time experiencing this. It wasn’t easier. I was left standing there with his Monk and a growing ache in my heart and lump in my throat. An empty room awaited me as I walked back squeezing his stuffed monkey.

For the remaining of this first hour I set up his room, making sure I had what I would need the moment they notified me he was out and I could see him. Once I had finished with his recovery room, I FaceTimed Calvin. While I am grateful for technology and the opportunity to see his face and hear his voice, it couldn’t possible equate to him being in the room with me, waiting for our son, together. I played worship music, looked out Josiah’s recovery room windows covered in spray-painted emojis and waited.

8:13 AM - By 8 AM surgery had begun and Dr. Payne and I got a phone call notifying me Dr. Payne had made his first incision. After the short phone call with the nurse, I took some time to reply to family and friends who had texted or sent messages with their well wishes and prayers. Though I was alone in the recovery room, the kind words of loved ones, readers like you and online friends, along with other mamas of cleft affected babies from all over the world that we’ve connected with online since we began this journey helped make me feel less alone. These messages encouraged me a ton and replying to as many as I could helped the time go by.

9:00 AM - Other than the coffee I sipped during our commute to the hospital earlier that morning, it was around this time I decided to make my way down to the cafeteria. Again, due to covid regulations, it was a quick trip down and back up to eat my breakfast in the recovery room as I continued to wait. No new update came from the nurse pertaining to Josiah, so I could only assume that as the saying goes, no news meant good news.

10:00 AM - Halfway through and I finally got another phone call to let me know Dr. Payne would soon be wrapping up and Josiah’s ENT would be next to place his ear tubes in. They let me know that it should be just a little over an hour left and he’l be done.

11:00 AM - I got the call. He was out of surgery and had been moved to the room where they would monitor him as they waited for him to wake up from anesthesia. As soon as he woke up, I would be able to enter the room and see him and hold him. 20 minutes after that phone call I was notified that he was waking up and I was racing down the hallways to the room he was in with his bottles in hand.

11:25 AM - I entered the room which had multiple beds and about 2 or 3 other kiddos waking up from their surgeries as well. The moment I opened the door I could see him and hear him. Josiah was sitting up with pillows propped up behind him. He was very groggy, confused, and moaning. I rushed to him and began to speak to him, hoping my voice could help soothe him. I could tell he was trying to figure out if he was really looking at his mama. He was so out of it. No mom ever wants to see their kid this way. Josiah had all sorts of wires (cords? ivs?) on him and around him, he had stitches hanging from his mouth and both dried up blood and fresh blood all around his mouth, lips, and nose. I wish I could describe to you how much a parent’s heart aches in that moment, yet simultaneously also throws on their super hero cape in eagerness to come to the rescue in hopes they can be everything their child needs and more. I waited no time to ask the two nurses around me if I could hold him already.

They said of course and encouraged me to try and give him water to drink. He tried to drink a little. But didn’t get in even an ounce. I could tell he was probably so incredibly thirsty but in too much pain and discomfort to be able to drink.

By the end of the hour we were back in his individual recovery room. Josiah was wheeled to his room and I followed next to his bed, doing my best to rub his little hand and address him so he knew I was still with him.

12:00 PM - Upon entering his room, I got him out of his bed/crib, in order to hold him. He continued to moan and I knew he wanted to be held. Falling in and out of sleep, moaning between the two, I held him in my arms as we sat in the chair next to his bed and the hospital room window. From there I FaceTimed Calvin and confirmed that he was out and now back with me. Once he had fallen back into deep sleep, I placed Josiah back in his bed and lifted the crib railings. His nurse came back in to check his vitals and IV. Josiah remained sleeping and I couldn’t help but just stand next to him and watch him closely.

1:00 PM - At this point a different nurse came in to advise me to grab lunch before they closed the cafeteria at 1:30 PM. So, since Josiah was still asleep, she would stay there and watch him while I hurried down to grab something to eat and came back. I quickly realized this is how dinner would go and every bathroom break since I was the only parent with Josiah.

2:00 PM - Around this time Josiah was still in out of sleep. He woke up at one point and was a bit fussy. I brought over a tablet to put on his favorite show and propped it up with extra pillows in his bed. He watched for a bit but after a while, I went ahead and took him back out of the bed and sat with him in the chair and attempted to give him more to drink. At this point we were only trying water to start, then gatorade or apple juice. Clear liquids were up first.

3:00 PM - This would be where things took a turn south. In short, Josiah’s IV fell out. And I didn’t notice until I spotted blood on the floor and on my pants and shoes. He wouldn’t stop crying and as I paged his nurse, I did my best to sooth him as best as possible. He had things all over him (taped to him, connected to him, arm restraints (“no-nos”) and was just uncomfortable over all, of course. Not to mention in pain and probably tired and hungry.

Two nurses tried putting his IV back in without having to get an entire new IV and dressings? (sorry, y’all, my medical terms are little to non-existent). He was screaming. It was probably painful and all I know is that I finally couldn’t stand it and told them to stop. I demanded they take all the things bothering him off. And give him a breather. And let me just hold him and sooth him. At this point 3 nurses were attempting to correct this IV mess. And he continued to point at his feet (where things were connected - pulse ox, IV) The nurses agreed to give us a moment as they went to notify the charge nurse of the situation. Doctors orders were to keep him on the IV throughout the night in order to provide him with fluids and medicine.

After a few minutes the nurses returned. In the time they were gone, Josiah had completely calmed down and I continued to soothe him as they spoke with me. Without the IV, Josiah would have to take all his pain medications orally at the appointed hours to avoid him being in pain for an extended period of time. It was also now up to me to make sure I was attempting to get him to drink his bottles or cup or anything that would ensure he would get fluids in and have wet diapers.

And thus began a long rest of the day and night. But he felt so much more at peace without that IV on him and at this point they did have to put the pulse ox back on his toe and continue coming in to check his vitals.

4:30 PM - By this time, he was back in bed, sound asleep and slept like a baby. As he slept, I gathered myself and called Calvin to fill him in on recovery so far. Josiah continued to sleep and as he did, I sat next to him, starring at him and holding his hand. Praying that God would ease his pain, give him rest, heal him, and help him drink.

6:06 PM - Josiah woke up and was THIRSTY. I handed him a bottle of apple juice (about 3 oz) and he went to town! The tablet once again was a huge help. He watched Mickey Mouse Club House and just laid back as he had his fluids.

7:00 PM - I put Josiah in his Huro Kids super soft and stretch Perfect Onesie and threw on a toddler bib to help wipe up the blood still coming out of his mouth, drool, and whatever else. He showed a bit of interest in his legos so I let him play in the crib for a little bit.

7:23 PM - After a round of meds, and a wet diaper finally (!!) I asked his nurse for a wagon and decided to take him on a wagon ride. Since he wasn’t hooked up the IV, they agreed to it and with the tablet in tow along with a blanket and a bottle, we were on our way. Josiah enjoyed it but I knew we wouldn’t be out for too long. While I was at it, this seemed like a reasonable way to take a bathroom break for myself. So while strapped into the wagon and with the bathroom door open so I could see him in the wagon, I took care of business. Ha!

8:00 PM - By the top of the hour he was back in bed and drinking more fluids. Gatorade this time! I prayed he’d sleep well into the night but I knew we’d be up again in just a few hours for another round of meds. I called Calvin to catch him up before I tried getting ready for bed myself.

9:00 PM - More meds for Jo meant waking him up again. It got to the point that he knew why we were waking him and the second he saw a nurse come in, he would start to cry. I would be the one to administer his medication since he was a bit traumatized or at least anxious when the nurses would get near him. :( This meant restraining him at times in order to get him the medicine he needed. I tried my best to do this quickly and effectively so it wouldn’t be prolonged.

10:00 PM - Josiah was finally down for the night. And I went into the bathroom to decompress. I had video messages from friends and family (I guess a little birdie.. cough, Calvin, cough) had texted a few people to let them know I was in real need of some encouragement. I felt depleted. And the night would mean more of this, not rest. Doing it alone just took a whole other toll on me, I guess. Anyways, these messages encouraged me even though I was a literal puddle of tears on the bathroom floor as I watched them and prayed.

We would be up again for meds and vitals at midnight, 3 AM and finally, 6 AM…

6 AM - Dr. Payne woke me up by knocking on the door and calling out to me. I quickly sat up and jumped out of bed to speak to him. He asked about our night and I shared with him Josiah’s progress with drinking and wet diapers. He reiterated Josiah’s diet of fluids only, then a few weeks of purees and finally solids after that. He was pleased with his progress so far and said if he kept it up once he woke up, we could go home!

By 11 AM the next day we were finally checked out of the hospital and reunited with Calvin. Upon getting all of Josiah’s medication and loading up the car, we headed straight home.

Recovery at home wasn’t easy. We continued to do our best to give him plenty of fluids and slowly introduce other foods as instructed by his doctor Josiah did end up losing some weight due to the struggle to get him to drink/eat. But with time, he got better and his mouth healed and he began to eat and drink more, thus regaining that weight he initially lost.

More and more of his personality started coming back and our sweet #JosiahTheBrave was fully himself within a week or two.

Below I share more resources for parents and I end with some words of encouragement (related to anyone) as well as what is next for Josiah.

RESOURCES:

Cleft Palate Repair Packing List

Diapers/Wipes
Zip up or button up onesies/pjs
(to avoid pulling shirts over their face)
Baby’s bottles + feeding syringe (just in case)
A TON of burping cloths/bibs
(we LOVED using the Neat Solutions Printed Pullover Toddler Bibs from Target - in most pics above)
Bottle cleaning system
Soap to wash bottles
Baby’s favorites: toys, blankets, books, etc.
An iPad or kids tablet + charger!!
Bed time essentials (sound machine, night light, humidifier, etc.)
Bag for laundry (there will be a lot of bloody clothes + burp cloths)
Snacks for parent
Extra pillow/blankets for overnight stay
Extra long phone charger
Change of clothes/pjs for parent
Toiletries for parent

Recovery Tips

1. Throw your feeding and night time routines out the window! No, seriously. I said it before after lip repair, and I’ll say it again, bringing your baby home post major surgery is like bringing home a new born all over again. Their mouth has just been operated on, they are in pain, they are still bleeding, irritable, and won’t be sleeping or eating like they used to for a few days. It’s OKAY.

2. It’s temporary. I had to remind myself, this recovery period is temporary. So if extra screen time helped distract him or soothed him, then extra screen time he got. If the only way he got “milk” down was Chick-fil-a milkshakes or a delicious berry smoothie, then by all means, bring it on. What mattered most was his comfort and his feedings. All other rules were bent.

3. Ask for help and accept it when offered. It’s wearisome. It’s exhausting. It’s draining. Whether it was dropping off groceries, a hot meal or gift cards for take out, dropping off coffee, caring for our home or pet while at the hospital, or lending us an iPad for Josiah to have while in the hospital, we said YES to all the help we could get. It all weighs on you, so allow others to help carry the load, even if it’s in small, simple ways.

4. It’s okay to kindly say no to visitors or outings. Your friends and loved ones will want to see your little one post-surgery, but don’t sacrifice your sanity or peace for it. It’s okay to ask for some time before having people over or going back out. Your little one will not be as happy or as active as they normally are, so embrace the snuggles and give them time. We took Josiah on walks and spent some time out in the back yard to give us all some fresh air from time to time,

5. You will feel overwhelmed. It will be hard. BUT you aren’t crazy or incapable. It’s normal. 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).

Final thoughts + hope:

I don’t know why. Why us? Why him? Why our first born son?

And while these answer seem pretty: “Because God knew you could handle it.” Or it’s sister response, “Because God knew He could entrust YOU BOTH with a child like this.” Or the one with the added compliment, “Because God knew you both would be strong enough parents”

I still ask why.

It sounds very “holy” to tell you I don’t, but then I’d be lying. I have no reason to pretend that in the thick of it or as I process I don’t wonder these things.

BUT one thing I am sure of, is that we, in fact, were not alone.

I wasn’t the only one with Josiah.

We weren’t the only ones in that hospital room.

God was there.

And as I look ahead to his next surgery. The biggie. The Bone Graft Surgery when he’s 7 or 8 years old. That is what I can hold on to when those questions come circling back around.

He was with me then, He will be with us now.

I can look back and remember how he carried us…

He carried Josiah as his little mouth was broken apart, stretched, and sewed back together. He was there when I couldn’t be.

And when I was tired and weak, He carried me too.

When I felt isolated and every opposite word of strong that you can think of, He never left me. He gave me every ounce of strength I needed to care for our child post surgery in the midst of a pandemic.

It is possible that the worse is indeed NOT yet behind us. But God goes before us.

And of that, I have no doubt.
I have no question.
I have no fear.

Thank you for reading! If this helps you or if you think it could help someone you know, please feel free share and tag me if you do so I can thank you!

Josiah is now fully recovered! He eats well, sleeps through the night, and can form a complete suction and is able to drink from a straw. Josiah is enjoying his todderhood like the rest of the kids his age (soon to be TWO). He will now move forward withs speech therapy and will not need any other surgery until he is about 7 or 8 years old!!