When I first found out I was pregnant, I never would have imagined that about a year later I’d be getting my four month old dressed in a hospital gown, sending her into an Operating Room. But this past Tuesday, that’s exactly what happened. This past week has been a roller coaster of emotions, and it’s a time I’ll look back on for the rest of my life. Since finding out about Christian’s cleft lip and palate, her lip repair surgery is something that has been looming over me. I always knew it would be a difficult time for Christian and our whole family, but I never could’ve imagined what it would have been like. For those facing a similar situation with their own babies, or for those trying to understand what someone close to you might be going through, I’ve recalled the events of this past week below.
On Monday November 5th, 2018 Chris and I packed our hospital bags and set off on our hour and a half long drive to Austin. We checked into a hotel right across the street from the children’s hospital and spent the rest of the evening loving on Christian and soaking up our last hours with her sweet cleft smile. Because her surgery was scheduled for 7am, with check in at 5:45, the last time Christian could eat was at 1:30am. So at 1:30, we woke up baby girl, fed her, and took out her NAM for the last time!
We woke up at 4:45, got ready in silence, loaded Christian into the carseat as quietly as possible, and went to the hospital. Our goal was to keep her as asleep as possible because we knew she’d want to eat something if she woke up. The plan worked until about an hour before her surgery. We had just checked in and paid one of our hospital bills when I peaked into the stroller. “Uh-oh….We’ve got eyes,” I told Chris. For the next hour we were in the pre-op room. Christian was put into a hospital gown that was entirely too big but the smallest one they had. I remember thinking that hospital gowns for tiny little babies shouldn’t even exist.
Christian started getting hungry and fussy, so we tried distracting her as best we could while the nurses took her vitals and the surgeon and anesthesiologist came in to greet us. As Christian started crying more, I looked to Chris with desperation. I didn’t want them to take her into the OR while she was crying. I wasn’t ready to say goodbye to her sweet smile. And the anxiety of knowing she’d be put under was starting to be unbearable. Finally the OR nurse came in, picked up Christian, and let us walk with her as far as the big, double doors that led to the operating room. Words could never describe what it felt like to watch Christian go past those doors without me. I cried and cried. We had three hours to kill, so we went down to the cafeteria for something to eat. I got chips and a Dr. Pepper — a real nutritious breakfast — and we went back to the waiting room.
The nurses had given us a pager, similar to the kind you get at a restaurant, and informed us that we’d be paged if they needed us or had an update. About 10 minutes after we sat down to eat, the pager went off. It was way too soon for the surgery to be over — it had just started about 30 minutes ago. I left Chris and rushed to the nurses station. Our ENT was waiting for us to let us know Christian had gone under anesthesia well and that she had finished placing her ear tubes. Apparently the OR nurse was really impressed with how calm Christian was as they put her on the operating table and gave her the gas to make her sleep. That made me feel a little better…a little.
For the next two hours, Chris and I played trivia games on our phones, listened to music, colored in a “calming” coloring book, and people-watched the other families whose little ones were having surgery. I did my best not to imagine what little Christian Grace was going through and just looked forward to the moment she’d be back in my arms.
Right around the 3 hour mark, we were called back to talk with Christian’s surgeon. He informed us the surgery went really well and that he’d be seeing us in a few weeks. Finally we were walked back to the post-op room. It definitely wasn’t what I imagined. It was one big room with about a dozen beds around it. In each bed was a child who had just gotten out of surgery with their family next to them. We had to wash our hands at the entrance of the room. I didn’t have to look too hard to see where Christian was. She was at one of the only hospital beds that looked like a crib, and I could just barely make out her sweet little blonde hair. In that moment, I was so terrified to see her new face — this would be the face she’d have for the rest of her life. My feet took me across the room as fast as they could, and there was my baby girl.
Christian had tons of wires and cords attached to her, an IV in her little hand, big stitches in her face, and crusted blood around her mouth and nose. She was still waking up from the anesthesia, so her eyes weren’t open yet. But her face was frowning, and she was letting out a constant groan. I immediately started weeping. It was terrifying seeing our four month old look like this, and the sound she was making was almost too much to bare. After working around all the cords and tubes, the nurse put Christian in my arms and told us we could try to feed her — after all, it had been about 10 hours since she’d eaten. We tried feeding her, but Christian just kept groaning, was bleeding onto the bottle, and she couldn’t figure out how to eat yet. This was the first time since she was about 3 weeks old that she had to eat without her NAM. The nice things about her NAM was that it gave her an artificial roof of her mouth, which made it easier for her to eat. So now she was having to eat swollen, sore, with her mouth pulled together, and without the NAM. If I remember correctly, we were able to get her to drink about half an ounce.
They put me in a wheelchair and wheeled me and Christian up to her room with Chris following with all of our bags. We spent the next 30 hours in recovery. Christian eventually opened her eyes, but she didn’t stop making the groaning sound until the next day. The sound of her groaning and screaming in pain will probably haunt me for the rest of my life. Our hospital stay was hard. Christian had “no-no’s” on her arms to prevent her from touching the stitches, she was getting her vitals checked every four hours, her stitches cleaned every eight hours, she was constipated from the anesthesia, and she was hungry. It seemed like there was no way for her to be comfortable despite the morphine drip they had her on. And she was on a ton of medicine. On top of the anesthesia she had previously been on and the morphine she was currently on, Christian was also being given tylenol, miralax, antibiotics, medicine to help her stomach, medicine to help with nausea, and an antibiotic being put on her face.
Chris and I were exhausted. The night before her surgery we hardly got any sleep, and then the night we stayed in the hospital we barely slept too because of the frequent check-ins and medicine times with her nurses. The day after her surgery we were ready to be home. Christian was finally starting to seem less groggy and “out of it”. Because she’d been eating a little better, we got discharged. We loaded up the car and headed home!
By the next day, Christian seemed to be doing much better. She was eating a little better and even giving us some sweet smiles. I had about nine different alarms set on my phone to keep up with her schedule:
6:30am – clean stitches, put on antibiotics, and give baby tylenol
9:00am – ear drops
10:00am – Oxycodone
12:30pm – baby tylenol
2:00pm – clean stitches and put on antibiotics
4:00pm – Oxycodone
6:30pm – baby tylenol
9:00pm – ear drops
10:00pm – clean stitches and put on antibiotics
12:30am – baby tylenol
I’m not going to lie, those first five days were terrible. Christian would start screaming and crying uncontrollably in pain, which made Chris and I feel desperate and helpless. She was eating alright but not as much as she typically would. None of us were getting enough sleep. And Christian loathed taking her baby tylenol and getting her ear drops, so a large part of the day was spent eyeing the clock and dreading having to give her the next dose of medicine.
Christian has always been such a good, happy baby — hardly ever crying, which made it that much harder seeing this “new” Christian. It almost felt like everything we knew about her left when the cleft lip did. We had this new baby with a new face and a new personality. But here we are, coming up on the seven-day mark since her surgery and things are getting better. Christian is a happy girl again (except around 12:30am/pm and 6:30am/pm). She’s smiling and giggling and loves watching her pups. She’s off the Oxycodone and seems to be in much less pain. She’s sleeping really well and finally back to eating her typical amount. And now Chris and I can finally focus on falling in love with her new, beautiful face.
It was such a hard, long week, but we made it. I spent the week looking at my sweet baby girl and being in awe of her strength and resilience. And just like every other step of this journey, God revealed Himself to us in the people He put around us this past week: the post-op nurses that loved on our sweet girl, the hospital volunteer who sung to Christian while she was first waking up from her anesthesia, the surgeon who did an amazing job, our family that has cleaned our home and fed us, the church family who has brought meals and sent flowers, the friends who have sent food and gift cards and checked in, and the strangers who have sent prayers and messages of love from all over the world (Portugal, France, Cyprus, Germany, Mexico, Canada, South Africa, Norway, Australia, Italy, Argentina, and India) to our family. To any family about to go through something similar, just know that it’s tough — but our babies are tougher. It will be such a hard time, but it will end. Lean on the ones you love for support, and lean on God when you can’t stand on your own.
I hear you whisper, you have nothing left
In the middle of the darkest night
It’s true, I will rescue you
I will never stop marching to reach you
In the middle of the hardest fight
It’s true, I will rescue you