Cleft Palate Repair

Posted by Kate

We headed to the hospital at 7:00 am.  Our little man’s cleft palate repair was scheduled for 9:40, so we didn’t have to arrive until 7:45 to check in.  He had to go in fasting, but he did amazing!

After a brief wait in the waiting room, we were called back to change our Super Man into a gown and prepare him for surgery. They checked his weight, pulse, respirations, and blood pressure.  Then the nurses and anesthesiologists talked with us a little about a pre-med.  I learned that babies are often given something to help them relax before going back to the operating room.  Our little guy was playing so happily that we all agreed he’d be fine without any pre-medication. And that was it.  He was ready.

I gave my sweet little guy a kiss before putting him in the arms of the anesthesiologist who then carried him back to the OR.  I was grateful to learn later that he didn’t ever cry. He was happy until the moment the anesthesiologist sent him off to sleep.

The waiting room experience was fine, but I got antsy during the last hour of waiting.  I was ready to see my baby and learn how he was doing.  After about 2 hours our wonderful surgeon came out to talk to us.  He is always so kind and thoughtful.  The first words out of his mouth as he approached us were, “He’s doing fine”.  He then told us that the cleft had come together well in spite of the severity of it.

We had another long wait while they settled him into post-anesthesia.  Finally, they took us back to see our brave little guy.  I was anxious to hold him, but knew that it’s best to let him wake up on his own, so we hovered over him lovingly while we waited.  He did well during recovery; however, at one point his oxygen saturation dropped so they attached an oxygen mask to his crib in such a way that it blew in his face.  That did the trick.  His oxygen saturation came back up and he breathed easily.

Slowly he started to wake up and we were finally able to hold him.  He consoled and soothed as soon as he was in my arms.  He is such a sweet little guy.

He took a teddy bear back with him for his surgery, the one that the cleft palate clinic had given him. One of the nurses  had dressed his bear in a mask and surgical cap.  It was very cute. He also took the blanket that was from a dear friend who had passed away several years ago.  It was symbolic of the angels I was praying would be with him during his surgery.

We were finally settled into his room by 2:00 pm.  Our little guy continued to have a lot of bloody drainage, but we were assured the amount he was experiencing was normal.  I rocked and held him while my husband went out to look for lunch.  Our lunch was late in the afternoon, which was hard on such a physically and emotionally draining day.  It was a mistake not to pack a lunch!

Our little man did quite well and slept a lot.  He got upset whenever he woke up and then it would usually take about 15 minutes to get him content and comfortable again.  Thankfully though he only needed Tylenol and Motrin to manage his pain.  He had had morphine during post-anesthesia, but no longer needed it once we were settled into his room.

We offered him a drink whenever he woke up, but it was always upsetting to him.  In the evening we decided to offer him applesauce instead and he devoured it!  He ate quite a lot of it!  This was a big relief since it had been almost 24 hours since he’d really had anything substantial to eat or drink.

Around sunset I needed to get out and use the restroom and take a little walk.  My bum was hurting because of the hard, uncomfortable rocking chair and I was emotionally SAPPED!  Our little man got really upset when I left.  He reached for me and screamed and cried as I left.  It broke my heart to go.  At the same time I knew that I needed a breather.  My husband was really sweet and was able to get him settled down fairly quickly.  I walked around and around in circles in front of the hospital and I cried and cried.  I was just done in from the day.  Everything had gone well, but it was draining and emotional just the same.  There came a point when I was too tired to keep walking but I wasn’t ready to go back yet, so I found a quiet corner in the hospital to cry.

Before heading back up to join the boys I watched these two videos:

 

That was just what I needed!  A good laugh had me ready to go back up.

What followed was a long and sleepless night!  The “sleeping chair” that was provided for the parents really wasn’t very comfortable.  It had a footrest, but no reclining capability.  I curled up on the seat and footrest as well as I could on my turn to sleep. The hospital provided us with pillows and blankets, which was really nice.

Our sweet little guy wasn’t able to sleep in his crib. Instead, he needed to be held all night, so my husband and I took turns holding him while the other tried to get some sleep.  We fed him more applesauce in the middle of the night.  Shortly afterward he threw up.  We think it was because he swallowed blood.  Poor little guy.  He really was such a trooper.  He was obviously uncomfortable and in pain but he was very patient and good at receiving comfort from mom and dad.

We were anxious to go home the next morning.  Our little guy was tired of all the people who were coming in and out.  He got upset when anyone touched him.  He wanted to get down and play and was irritated with the cords that were hooked up to his feet.  We spent a lot of time carrying him up and down the hall that morning in order to give him a change of scenery.  When the surgeon came to see him, he discharged us so we could take our little guy home. After a short nap, our little man was ready.  We were home by noon.

Our super man was so happy to be home and surprised us all by spending an hour or so playing in the playroom.  I think I let him play too much that day though because his poor little body was just trembling after his bath that night.  He slept well that night.

Two days after his surgery was his birthday.  That was the day he really started walking for the first time.  He kept walking back and forth between me and my sister.  In just a few days he was walking from room to room.

He struggled with eating for about a week and a half after surgery.  He wanted to eat, but would often get upset mid-feeding, at which point we stopped eating and had snuggles instead.  We had to be very faithful in administering his pain medications, but at the same time, he had many happy and playful stretches when you’d hardly be able to tell he’d had surgery.  He definitely had rough stretches too though.  Thankfully, going outside to sit on the porch always helped him to feel better.  He was very sweet when he was in pain and sought comfort from me.  He did pretty well sleeping at night as long as I got up every three hours to give him his medicine.  I did that on my own the first few nights, but that got pretty exhausting so my husband and I started taking turns.  We were usually able to give him his medicine without disturbing him much and he’d go right back to sleep.

By two weeks after the surgery, he was back to his normal self!  It was amazing! Our surgeon told me it was unusual for a baby to do so well.  They are typically cranky for three weeks after, so we feel very fortunate that our little guy did so well!

Overall, things went better than I had expected.  Our little man handled the repair and recovery really well.  The doctors, nurses, and hospital staff were wonderful!  We are so grateful for the wonderful care we received and for the angels that were watching over us.  We know that our Father in Heaven was mindful of us at this challenging time.

 

Read more of our story here:

Our Baby Will be Born With a Cleft Lip and Palate

Our Newborn’s Cleft Lip and Palate

Our Baby’s Cleft Lip Repair

Transitioning From a Bottle to a Cup to Prepare for Cleft Palate Repair

Preparing for Baby’s Cleft Palate Repair