Bella's Cleft Palate Surgery

Well I'm not going to sugar coat this experience....it was awful. There is no other feeling like putting your child through something you know is incredibly painful and having them look up to you with big eyes wondering what they did to deserve this, having no way to explain to them why.

The surgery was scheduled for Monday Dec. 22nd. We were to arrive at 9:30 that morning downtown at Children's Mercy. Her surgery was to begin around 11am that morning.

Bella prior to surgery

As we waited around prior to her being taken away for surgery we heard another child screaming as he/she left their parents. It makes you glad that your child doesn't have a clue what is happening and luckily will go with strangers, although it makes it harder on you later.

Bella left for surgery right around 11am, and we headed off to wait in the waiting room. Almost an hour went by before we got the call that they had started surgery. Another hour went by and they called to let us know everything was going well and the doctor would be coming by to see us in a half hour. Dr. Singhal did come to see us and let us know that the surgery went wonderful, Bella was heading off to the recovery room and in an hour to hour and a half we would be able to see her. It was probably an hour and a half later and nurses from the recovery room called us to let us know that Bella was not coming off anesthesia well, she was having troubles breathing, and they needed to put in a breathing tube. A half hour later we called back up there to see what was happening, and they said that they normally didn't allow parents into the recovery room, but since it was taking so long, we could come up and take a peek.

It was quite a sight to see her. Her mouth and nose had dried blood coming out. She was sleeping as the pain medication had set in. They claimed we were having to be transferred to a different room than originally thought, so it was taking awhile to get the room set up. But they would call us back up as soon as the room was ready. So back down to the waiting room we went. Another 30 minutes went by and we were finally called back up to head with Bella off to her room.

Bella with her breathing "nose trumpet"

By this point Bella was crying off and on as we changed rooms, she originally had an oxygen mask on, but we took that off and held the oxygen up to her face, so that it was more comfortable. Jesse and I spent the next 15 hours trading off holding her and she went between sleeping and being awake and in pain. I think the two of us each got about 3 hours of sleep that night. Our main goal was to get her to eat, which is pretty much impossible when the surgery was on the mouth. They told us that the better pain medication could only be taken orally, and that was only once she ate. The pain medication she was currently on, only lasted 45 minutes long, and could be given every 2 hours. Which meant most of the time was in pain. Some time in the early morning hours we convinced the nurse to take out the nose trumpet. Figuring it was probably hard to do any swallowing, with something foreign in her throat. Let alone a newly constructed mouth.

The nose trumpet finally comes out and we attempt eating with a syringe.

We maybe got 4 ounces in her the whole time we were in the hospital, but luckily the next morning they told us that was enough to start her on the oral medication, and to let us leave around noon. So we packed off and headed home, this was Tuesday the 23rd.

Bella showing off her arm braces

With little sleep we prepared to take turns feeding her and holding her. Jesse ran off to fill the prescriptions, while I attempted to feed her again. That day went alright, we could tell she was in pain but the meds seemed to do their job. Our only big problem was she really wasn't that interested in eating, she maybe only took a couple more ounces once we got home. We were told to keep her upright to sleep, so a car seat worked well, and to also run a humidifier as the most air would help the healing.

Bella receiving her humidified air treatments

That evening Jesse and I took turns again, I stayed downstairs with her until 4am, and then headed off to bed, as Jesse took his turn. The next day, Wednesday Dec. 24th, was much the same, except Bella flat our refused to eat. She hated taking the medicine, and we believed that eating from the syringe was too similar to taking medicine, and she would have nothing to do with it. Because she kept taking medicine on an empty stomach, she was getting upset. And to add to that, whenever she had her arms free, she would violently tug at her ear. So we figured she must have the added benefit of getting an ear infection, so we started her on drops for that.

Hanging out Christmas Eve

Christmas Eve night, we again split shifts. Bella was more restless than the night before, with all her added ailments, and little sleep was to be had by all of us. Jesse noticed that she was having difficulty breathing. And in fact it seemed like she was having bouts of sleep apnea, and constantly waking herself up. That next morning we noticed that some of the gel filler that had been in her mouth, was now missing, and a new hole had formed. Frightened we tried all of the nurses lines to the hospital we could, to talk with a doctor. We figured we would be heading back to the hospital. What a Christmas day for us!! We finally did get in touch with an on call doctor, who told us the missing gel was not that worrisome and it could wait for our follow up with the doctor the next week. We were still concerned about the breathing, but I realized the narcotic pain medication she was taking, claimed it could cause breathing problems. And since she was taking so much of it, I figured that might be causing it. And decided to space out the doses more, add Tylenol in between. We also attempted feeding by cup as an alternative to the syringe. It was a messy process, but we did get Bella to eat.

Bella eating/drinking by cup

As we spaced out the medicine the breathing got better. On Friday, December 26th, the day was going much the same, except again Bella flat our refused to eat anything. And her poor tummy was so upset that she was having horrible diarrhea from all the medicine on an empty tummy. So we spent most of the day attempting to feed her, and getting no response. It took all the way until Saturday morning at 4:00 am until she would eat. I mixed a little bit of baby food carrots into her formula and lucky for me she started eating. After 30 minutes into our feeding, we had a huge storm come through and the light went off. So I had to finish feeding by candle light. Jesse got up and we saw some of our neighbors outside, as there were shingles all over the yard. Since we couldn't do anything about it and it was so early we all decided to head back to bed and try and get some sleep. Oh and on this night Bella was actually doing a good job sleeping, she was in our bed beside me, while Jesse camped out in the guest bedroom.

Bella eating by candle light

So it's now Saturday and we have Bella eating, and her pain is getting better, but we have no power. Luckily we had warm water, so we were able to give her fresh warm formula. But as the morning wore on, it got colder and colder inside our house. Jesse and the neighbor had to go buy a back up generator for our sump pump, as it had been raining all early morning/morning and we didn't want to flood our basement. Finally as we were debating leaving our house and heading over to Jesse's sisters, the power came back on, which was 1:30 in the afternoon.

Bella trying to stay warm as she naps, while the heater isn't working

And after that point we had hit the magical 4 day mark, and Bella started feeling better. It's now been a whole week, and we finally got some smiles and laughs our of her. We are also getting her to eat more, granted she is still extremely messy, but we will take it.

Thanks to everyone for the warm wishes and prayers, we certainly needed it to get through this difficult time. But I think I can say we made it through to the better side and we have our return appointment with the doctor tomorrow morning, so hopefully he sees that everything is healing well. And now we just need to somehow get caught back up on our sleep!!