Friday, November 11, 2011

Rose's Cleft Palate Repair

The following post was written for my fellow cleft moms on Babycenter.

Before surgery & one week after surgery:

It took me long enough, but I’m finally getting around to chronicling Rose’s cleft palate repair – actually, the whole story of her cleft, including before and after surgery.

Rose Kathryn was born May 24, 2010. She had a complete cleft palate. Since there was no cleft lip, this has been (and hopefully will continue to be) her only surgery.
My husband and mother-in-law also both had cleft palate. We did not know about the cleft before Rose was born, but because of the family history, we had known it would be a possibility. We had actually been preparing for Down Syndrome, so were somewhat relieved that she turned out to have a much more treatable health issue.

I exclusively pumped for eight long months! Woohoo! She started on a Haberman feeder, but she couldn’t suck enough to get milk from it, so we were squeezing it for her. She was then switched to a cross-cut preemie nipple and did great with that up until her surgery.
Rose has always gained weight well and met her milestones (apart from speech, of course), for which we are very grateful. She also had reflux and has a non-functioning kidney.

We started out at Riley Hospital for Children in Indianapolis. In August, we got in to the cleft team at Shriners in Chicago on a cancellation and switched there for financial reasons. It turned out that we were much happier with her care at Shriners.
At her initial appointment, they told us her cleft was quite wide and said she would need to be close to a year old before surgery. They also assessed her hearing and said she would need intubation at the time of the cleft repair.

We are missionaries and were supposed to leave for Africa when Rose was three months old, but because of the surgery we had to stay in the US for an extra year. We had spent the first few months of Rose’s life living in my parents’ spare room while we waited to figure out what our next step was. After getting a timeline to work with from Shriners, we moved to Dallas for the winter so that my husband could do recruiting for our organization.

Rose’s next appointment at Shriners was April 20 of this year. Because our local shriners’ temple was unable to fly us all the way to Chicago for the appointment, we moved back to Illinois on short notice and drove up from there.

At the appointment, they said she was ready for surgery, but they had no openings in the near future. We went home discouraged. But the next day we got a phone call saying there was a cancellation opening on May 2, so we snatched it up!
Rose was eleven months old at her palate repair. Both of my parents took off work and accompanied my husband and me and Rose on the five-hour drive to Chicago.

We stayed at the Ronald McDonald House the night before surgery. Such a wonderful place. Rose loved playing in the “secret treehouse” full of stuffed animals. I love going there for appointments, because there are other moms of cleft kids staying at the RMH, and we can all share stories and tips.

We put Rose to bed early, but woke her up for some late-night avocado before the midnight cut-off for solid foods. We then gave her all the apple juice she would take at each night feeding and in the morning right up until the 9 AM clear liquids cut-off. I was most worried about getting her through the morning without eating (her surgery was at 1 PM), but she did surprisingly well, I guess because she was distracted by all the activity.

When we arrived at the hospital, they did some check-in stuff, made sure she was healthy, got a health history, etc. This took place in a check-in room where there were a few other babies prepping for surgery too. There was a lot of downtime between check-ups, so they let us walk around the hospital while we waited.
After we had been there for a while and seen several nurses, the ENT doctor who was going to do her ear intubation came to see us. He told us that no one had informed him that he was scheduled for surgery that day, and he had patients scheduled at his regular practice. He said we would have to reschedule. I started crying and telling him that we needed to have this surgery that we were moving to Africa! I guess my motherly tears won him over. He grumbled a bit, but said he would do the surgery after all. Whew!

The hardest thing that happened pre-op was that they had to do some bloodwork because Rose was under a year old. We were with her when they drew blood, and of course that was traumatic for her. We took her back out to the waiting room, and she and Nana took a look at the fish tank, which helped her calm down.
Next came the admission room. They asked more questions, checked her out some more, had us meet with the anesthesiologist and the surgeon for more explanations of what would happen. It turns out the cleft surgeon didn’t know he was scheduled for surgery either! He had gotten a call asking if he was on his way, and that was the first he heard about it. So someone in scheduling apparently made a pretty big error there, but amazingly, it worked out and things proceeded as scheduled.
The last thing they did in pre-admission was give her some Versed to calm her down, and then the anesthesiologist took her away. She was zoned from the meds, so she didn’t mind being carried away from us. She looked back at us in a daze and waved bye-bye as the doors shut behind her. We had to leave at that point, but they told us they would put her to sleep with gas before they put her IV in. I was really comforted to hear that.
She was in surgery for 2 hours or so. The ENT doctor came out when he had finished putting tubes in to tell us that part went fine. Then the craniofacial surgeon came out when he was finished to say the whole thing had gone well also. It was a while before they got her awake and moved into her room in the PICU, so it was about 4PM (three hours after surgery began) when DH and I got to come in and see her.

Seeing her right after surgery was the hardest thing ever. For those of you who have yet to go through a surgery with your LO, just know that it's ok and normal to feel overwhelmed and emotional when you see your baby post-op. She was lying kind of limp in the arms of a nurse and crying. The thing that surprised me the most was how her voice sounded, kind of like a barking seal (because of the breathing tube used during surgery). She was obviously in pain and confused. She had a big thread coming out of her mouth (it's a suture that they can use to pull her tongue down and clear her airway if needed), and was bleeding some from the mouth. She had her IV, and was hooked up to monitors for respiration, heart rate and oxygen level.

For the first three hours after surgery, she drifted in and out of sleep, and she cried all the time that she was awake. My mom, husband, and I took turns holding her all evening, and we all cried a lot. When my mom came in the first time, I was holding Rose and crying. She told me, “You had to do it.” And somehow that was exactly what I needed to hear. Around 7 PM, she woke up and didn't cry, just sat there looking miserable. But that was a relief!

I was the only one allowed to stay overnight with her, and they were really kind to let me sleep in a regular hospital bed with her. I put her to sleep for the night by reading Goodnight Moon, like we usually do. I kept reading it until she just fell asleep. She only woke up twice during the night, about the time she was due for her next pain medication. I would summon the nurses and they gave me the medicine to give her. We would also try to give her some apple juice or water while she was awake. She would fuss for about 10 minutes until the meds kicked in and then go back to sleep. At 2 AM when she was awake, she tried to smile. =)

In the morning, things looked so much better. She was smiling some and feeling ok except when her meds started to wear off, but she was able to get by with only Tylenol and Motrin. They capped her IV, unhooked her monitors and let her eat some real food for breakfast (yogurst, pureed oatmeal, formula, etc.). It was a big relief to get the suture taken out of her mouth!

Later in the morning she was moved to a regular room. She started crawling around that morning as well. We walked around and took Rose to the play areas inside and outside the hospital. For meals, we brought her to the patient dining hall. At lunch, we enjoyed a concert by a bunch of junior high orchestra kids. She ate decently, but took less and less formula.
She spent one more night at the hospital because we had a long drive and they didn’t want her in the car all day so soon after surgery. I stayed with her all night again. It was about the same as the night before, but less scary without the monitors beeping.

She handled the drive home pretty well. She spent two weeks in arm restraints, which didn't seem to bother her at all, although she stopped pulling up and cruising, and then had to spend some time catching up again on her gross motor skills afterwards.
She had to eat by syringe for two weeks, and that was rough because she wouldn't take any liquid from the syringe after we left the hospital. We diluted her baby food with water, made "smoothies" with fruit, yogurt and milk, whatever we could do to keep her hydrated, and she was ok.

She became more like herself every day, and after about ten days she was no different than before the surgery, except that she did become more snuggly and was shy of strangers for a while. For several days she didn't make any sounds, but within couple of weeks she was saying "mama" and "nana" like before.
The week after surgery, she spiked a fever one night. We called Shriners and they said to treat it with fever reducer, which we did, and it went down the next day. A couple days after that, my husband thought he saw a hole in her palate. She also had a white coating on her tongue. A nurse friends told us it looked like thrush, so we took her to the pediatrician. He said there was no thrush, but that a hole had definitely reopened in the palate. He thought her fever might have been from fluid building up in the palate, and that it had burst, which caused the hole and also allowed her fever to go down. We were so discouraged about the hole, thinking she would have to have another surgery.

At her one-month post-op appointment, we asked her surgeon about the hole. He looked in her mouth and said there was no hole. He showed it to us and, sure enough, it had closed on its own!
All went well at the check-up, except they were concerned that she wasn't making new sounds yet. They referred her to early intervention. We were travelling all summer, so EI didn’t get a chance to evaluate her until she was 15 months old. By that point she had caught up and was making several new sounds and saying about 20 words, so they said she didn’t need services.

Her language has really exploded since surgery. It was immediately obvious that she was able to understand so much more once she had the tubes in her ears. Now she’s 17 months old and has a 100-word vocabulary. She has some trouble with her velar sounds (K and G), but the EI speech pathologist is a friend of ours and answers any questions we have.
Incidentally, the week after Rose’s surgery, we found out we are expecting another baby. Our son is due January 7, and according to his 20-week ultrasound appears to be cleft-free! We are planning to leave for Africa next April.

To all the other moms and dads who have a surgery (or several) looming in your future, you can do it! Your LO will be ok, and the hardest part doesn't last that long. Because you have been through this, for the rest of your life you will be able to encourage and comfort other parents who are going through similar situations. You will get to see your child learn new skills and do the things they couldn't before. You will both have so much fun the first time they discover that they can blow raspberries!