Mouthing Off

Kymee's therapist is working to improve Kymee's mouth functionality. So what does a baby mouth do? Kiss, Eat, and Speak.

KISSING

Kymee loves to give kisses, which really means she licks all over my face. She also give wonderful Eskimo Kisses. But lately she loves to lean her forehead against my forehead, sometimes head butting me to say, " I love you, Mommy." When she sees Spartan, she sticks out her tongue for a doggy kiss.

No therapy needed here (Only napkins to wipe off the extra slobber)

Speaking

Before Kymee had surgery, she said mostly vowels, with a few "mmmmms" thrown in. Nice for me because the only word she could form with her mouth is "Mama."

She also started making these weird guttural sounds from the back of her throat - like she was growling. This may have practical if she had been learning Arabic, or maybe German. The therapist explained that all babies speak all language sounds. The language of their environment determines which sounds are reinforced and which are ignored or discourages, so eventually dropped. Because the muscles in Kymee's mouth have not developed properly, we must encourage sounds which are not always "correct" but which have not the closest sound, but the closest mouth formation to the sound we want to achieve.

For example, Kymee began saying "nnnnn" after surgery. This is good because the tongue is in the front of the mouth.Ds are too hard a sound yet to make with her new palate. So, when Kymee says, "Nana" it means "Dada."And although "Gaga" sounds closer to "Dada" than "Nana," The n sound is formed in the front of the mouth - like the d, whereas the g sound is formed in the back of the throat. If the g sound is encouraged, Kymee's speech will be harder to correct in the future.

So, this is Kymee's "Nana."

In order to encourage muscle tone and development in the mouth, which will later help her speech, we were given this odd toothbrush.

Along with cleaning her teeth, we can gently massage the gums and palate after it heals fully. Kymee doesn't like it too much.

EATING

Kymee loves to eat, but there are 4 main problems with her eating.

1. Food still comes out her nose.
2. She has become a picky eater.
3. She does not have a "stop" or even a "pause" button on her appetite.
4. She is under-weight (which oddly enough doesn't seem possible with #3 being true as well)

Food & Nose Challenge:

I thought this would end when the surgery repairing her cleft was complete. The therapist explained that when you eat the soft palate moves back and closes the opening to the nose so the food will go down the throat. However, Kymee has not developed the muscles needed to move the soft palate back - so some food goes up into her nose instead of down the throat. This is called "velo-pharyngeal" incompetence. At this point, we are hoping time will develop the muscles needed, and therapy is not being done.

Picky Eater:

After surgery, Kymee decided she would no longer drink formula. She purses her lips together, she screams. She holds it in her mouth and doesn't swallow. She lets it drip out of her mouth as she lets us know in high pitched squeals that "THIS IS DISGUSTING." I don't blame her - in fact, I quite agree. However, formula has high nutritional, and caloric value. The therapist, suggested yogurt, and or soy milk. We are having success with both - but Kymee is still not getting all the nutrition she needs.

Can't Stop Eating:

Kymee never gets full. She can eat half of a honeydew melon, and scream when I stop feeding her. She will eat until she throws up. I try to measure everything out to give her the exact ounces she needs, than I let her scream for 15 minutes at the end of feedings. Very frustrating.

The therapist put a few things together I would never have thought of. 1) Kymee's inability to stop eating; 2) Kymee's inability to stop crying once she starts; 3) Kymee's unusually long attention span - she can play with a deck of cards for 45 min to and hour!

All three traits are obsessive, and she seems to have no self-control (self-regulation). Even a good thing (like the attention span) is bad when it is not age appropriate. Self regulation is a brain-stem function (like breathing) and most of the time it happens without being taught. It is not a learned behavior. However, if there is a problem in this area, it can be taught and practiced using other parts of the brain. Right now, we are going to keep an eye on Kymee and see how these skills progress naturally.

The therapist also suggested that Kymee is not getting enough oral stimulation because she has not been sucking sense birth. So we have a new "toy" to help work out the mouth muscles. Meet "Gator" Kymee's friendly juggle.

We hold "Gator" against Kymee's cheeks, and she chews on him. It provides sensory imput to the lips, gums, tongue, palate, and jaw.

Under Weight:

Although she loves to eat, she is small for her age. When she came to live with us, she was 90% in height and 50% in weight. Before surgery, she was 50% in height and 25% in weight. Now, she lost weight during surgery and recovery so now she is 50% height and 15% weight. She is 27 in, and 17 lbs 12 oz.

Because of these challenges, a nutritionist was called in.

Kymee is on a new diet. Emylee is jealous. So am I. It is a high-fat diet. We are to add real cream to her fruit, butter and olive oil to all her meats and veggies, and she is to eat high fat cheese, yogurt, and dairy products. Add more meat and egg yokes to her diet. I don't think she's going to want to go back to watered down flavorless baby food from jars.

What we are hoping is that she can eat the same ounces of food, but feel fuller, be happier, and gain some needed weight before she slips into the "dangerous zone" (which is under 10% weight).

I have no doubt Kymee will use her mouth for more than just slobbery kisses very soon!

4 Days/3 Nights at Cooks

April 13, 2011

Scheduled Surgery
Dr Obaid office called and said Doc would be out of town on 13th so rescheduled for April 27th, 9:00 am

April 26th

Cook Children’s called and said surgery rescheduled for 2:00 pm
Kymee could eat baby food or have formula until 6:40 am on the 4/26
She could drink clear liquid until 10:40 am
We needed to be at the hospital at 12:40 pm for check-in and pre-op

April 27th

Woke Kymee and made her eat - oatmeal mixed with formula & applesauce

Kymee refused to drink the clear liquid - we tried both coconut water & apple juice, she had about ½ oz

Arrive at hospital (really it was closer to 12:50 - which I needlessly worried about)

With Mom, Dad, Emylee, and Grandma

Checked into hospital

Reported to Pre-op for vital signs & countless questions asked over and over again by every person who saw Kymee (don’t you think maybe the nursing staff should talk to the anesthesiologist and the surgery staff so they don’t have to keep repeating the same questions?)

Were told by the nursing staff that Dr Obaid had arrived at the hospital an hour and a half late so our new scheduled time of surgery was 3:30 pm.

We were informed on the procedure of surgery:

1) I would hold Kymee as the sprayed “kiddy valium” up her nose - this would prevent “Mommy separation anxiety” - and she would not remember anything. I ask if I could get some too.
2) They would wheel Kymee back to surgery, she could bring comfort items with her. We chose her wubby, a silky blanket which she loves the texture, and her stuffed bunny.
3) The anesthesiologist would place a face mask on her which would knock her out. I got to choose the flavor: cotton candy. Emylee said this was cruel, because she would grow up with a subconscious aversion to cotton candy - a cruel fate to live with.
3) They would administer an IV after she was already out - so she would not feel a thing.
4) The surgery would take around 2 ½ hours
5) After surgery, she’d be in recovery room than moved to a private room where we could be with her, and if all went well, we’d be going home in 24 hours.

I asked if Kymee could have a vanilla flavored pacifier since she hadn’t eaten since 6 am. The answer, “No, it’s just unfair to the child to give them a pacifier when they won’t be able to suck after the surgery.” My reponse, “And it is somehow fair that my child hasn’t eaten for 8 hours, and we have nothing to keep her happy?” “Sorry.” the nurse replied, “That’s the rules.”

Aunt Kim arrived. We were sent to the ‘play room” to await surgery. We waited. And waited. And waited. 2:00 the original time came and went, so did 3:30. We continued to wait.

The nurses informed us Dr. Obaid was stuck in surgery and it would be a couple more hours. Poor Kymee and her tummy. Surprisingly enough, she was happy and played - and showed very few signs of being hungry, which is very rare for her. We chalked it up to answered prayer. I knew one friend was fasting and praying for her all day, many posted prayers on Nelson and my facebook, our church was lifting her up to God, and our whole speech and debate team was praying for her as they prepared and competed in the Regional Tournament.

Nelson, Emylee and I hadn’t eaten, so we left Aunt Kim and Grandma to watch Kymee and we headed to the cafeteria. When we returned Kymee was asleep in Aunt Kim’s arms.

The anesthesiologist consulted with us and told us he would talk to Dr. Obaid and see if we could give Kymee clear liquid while we waited. He returned to give us a choice. “We can give her clear liquid, but she have anesthesia until 2 hours after consumption. Dr. Obaid believes that the surgery he is in is not going to last the full 2 hours, so if he gets done and Kymee is not ready to go under anesthesia he will bump the patient after her into her spot and she will have to wait til he is done with another surgery. So, we can give it to her and take the chance, or you can hope she gets into surgery before the 2 hours. What would you like to do?” Kymee was surprisingly happy. We said no liquid, we want the next surgery spot. WRONG CHOICE - Kymee was not wheeled into surgery for another 2 hours and 30 minutes.

When they said they were ready to take Kymee, we circled around her, laid hands on her and prayed. I couldn’t pray out load - because the tears were choking me. The nurse gave Kymee the “baby Valium” arranged her on the surgery bed along with her wubby, bunny and blanket; I kissed her; and at 5:10 they wheeled her away.

The family relocated to the waiting room, which was pretty much empty. Stephan arrived with Taco Bell and a hug. Uncle Mark arrived with more hugs. Nelson changed the channel in the waiting room from the “Royal Wedding of WIll & Kate” to the “Texas Rangers.”

About an hour into surgery the phone rang, Emylee answered and handed it to me. The surgical nurse was letting us know everything was going as planned and they were slightly ahead of schedule.

Two hours after they’d wheeled Kymee away, Dr. Obaid arrived dressed in his scrubs. “Everything went perfectly. No problems. We’ll be moving her to recovery in a few minutes, then in about an hour, she’ll be moved to a room where you can join her.”
We all sighed a breath of relief and praised God.

About 20 minutes later, Dr. Obaid returned and said, “We removed Kymee’s breathing tube. She didn’t like that too much, so we put it back. (What do you think he really meant with those words?) I am transferring her over to ICU for the night. You can move over to the ICU waiting room and they’ll tell you when you can go in to see her. It may be a while, so now might be a great time to grab a bite to eat or a coffee.”

Grandma decided the day had been long enough - so Stephan took her home. Mark and Kim stayed with our stuff, and Emylee, Nelson and I headed to Starbucks - just in the nick of time. They were giving their “last drink” call.

The ICU waiting room was packed - hardly a spot available. More “Prince William Royal Wedding” previews on the TV. They finally called us back - only Nelson and I to start with, then we could have no more than 4 by the bed at any time.

The ICU consists of a row of “rooms” divided by curtains. Their were a few glass front rooms where children with contagious disease were kept. It was a sad and daunting place. We were ushered to bed 14 - the corner room.

I had lost all track of time by now - I just wanted to see and hold my baby. Seeing - Yes. Holding - No. She had so many tubes and wires it was hard to see any skin on her tiny body. She was completely drugged out.

The Nurse told us that whenever she wakes up she fights the machines and tries to pull the breathing tube out. The ICU team had already re-intubated her once. So the goal was to keep her as drugged as possible with morphine and some other pain killer I can’t pronounce, so that she would not move or wake up. We were NOT to stimulate her or talk to her. We were also told we were not allowed to get naked behind the ICU curtain - Seriously??

We brought Mark and Kim into the curtained off room with us, just then Kyme began to stir. She thrashed on the bed - I grabbed one side of her and the nurse the other. We held her down as blood squirted out her mouth and nose and she fought us holding her down. She may not quite be 18 pounds, but she is a strong little girl! The nurse upped her morphine until she settled down.

Mark, Kim and Nelson left to go have a stiff drink - while Emylee and I settled in for the night.

April 28th

A couple more times Kymee began fighting and I helped the nurse hold her down. Every time she began fighting, she lost more blood - the nurse was starting to get worried that she couldn’t stop the blood flow. Around 2am the nurse called Dr. Obaid. Her gave her a surgical trick to stop bleeding, that she had never used before. Soak gaze in saline and some sort of prescription and place in her mouth. The pharmacy was called to make up the concoction.

Meanwhile the head ICU doctor on-call was called in because Kymee wouldn't stop thrashing and pulling out her ventilator. He suggested it may be placed too far down her throat and that was why it was bothering her.

Around 3am, the ICU doctor, 2 nurses and the respiratory technician stood around Kymee’s crib and Emylee and I looked on. They slowing pulled Kymee’s respirator out mm by mm. She stirred, and continued to bleed harder. They retaped the breathing devise to her little face and stuffed her mouth with soaked gaze strips. They upped her morphine. She stopped breathing completely on her own - the machine took over. This was probably the scariest moment of my life. After a few minutes, the bleeding stopped, but she was still unable to breath on her own.

Kymee was to drugged to move, let alone pull her breathing tube out any more. She looked peaceful. I did not feel peaceful.

Around 6am, Dr. Obaid called for a status update. He told the nurse that she needed to take down the pain meds, or Kymee would not be able to breath herself. And after taking down the meds, they could begin weening her from the ventilator.

7:00 came a shift change - the night nurse had sat by Kymee’s bed all night, holding her whenever she thrashed.

Around 8 am, Dr. Obaid arrived. He stood next to Kymee in his suit, along with the ICU doctor, two nurses, the respiratory technician all in scrubs. Dr. Obaid assured us everything would be ok - but the look on his face said otherwise. I could see the worry in his eyes as the removed the breathing tube, and the day nurse had tears streaming down her face, and Kymee took her sweet time taking a breath, and then she cried. Dr. Obaid smiled and said, “That is the sweetest sound I’ve heard all day, if she can cry she can breath.”

It was the first time we had heard her cry, and it was a funny sound. It sounded almost like a newborn, not a 10 month old baby. Before the surgery she had had an open “Ahhhh” sound to her cry, now with a palate between her nose and mouth, the sound was small and hallow.

They replaced the ventilator with a nose tube which delivered oxygen and a prescription to open up her air passageway.

You could see Kymee improving all day by leaps and bounds. We were now allowed to hold her, and she responded to us as best she could. She was on heavy pain meds, but not comatosed with them as before. She still wasn’t eating at all by mouth, so there was no chance of her going home.

Dr. Obaid ordered another night in ICU.

April 29th

In the middle of the night she began running a fever, far above what she should. Our night nurse had returned, and she let me hold her as she stripped her and gave her a cold sponge bath, trying to bring down her temperature. Her fever broke after about and hour, but it would still spike every so often throughout the night. In the morning in broke for good. I however caught the chills, and just couldn’t get warm no matter what I did.

A family in church had provided us food - lots of

it. We ate in the ICU waiting room and shared our dinner with a couple of families there. One told us they had been living in the ICU waiting room for 3 months while their son had had 3 heart surgeries. This is the first home cooked meal they'd had in all that time. God multiplied the loaves and fishes and blessed so many with a simple meal.

In the evening, we were moved to a private room, where the nurses only check vitals and give pain medicine every 4 hours. So, we were able to get a little sleep. Kim switched places with Emylee and joined me on night shift.

April 30th

One by one the strings and tubes attached to Kymee had been removed, the glow-in-the-dark toe and the IV port disappeared last,

We sang along with Kymee:

“I've got no strings

To hold me down

To make me fret, or make me frown

I had strings

But now I'm free

There are no strings on me”

After 4 worry-full days and 3 sleepless nights, I was ready for a new challenge - caring for a recovering baby from the comforts of home, surrounded by my loving family and friends and an ever attentive barking hound dog.