Wednesday, May 4, 2011

4 Days/3 Nights at Cooks

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.

Monday, April 25, 2011

What are they doing to Kymee?

This doll has a cleft lip and No-Nos -how cute is that!


At our Pre-op with Dr. Obaid, he clearly explained what he would be doing to repair Kymee's cleft palate. I am still wondering whether I wanted, or want to know the information. Dr. Obaid was professional and matter of fact - and I smiled as I listened - then walked to the car and shock set in.


"Did he just say what I thought he said?" I asked Emylee.


We sat in the car, laughing and making jokes at what is not funny at all. Our warped way of dealing with the stress.


So what is Dr. Obaid going to do to "fix" Kymee's cleft?


He will cut around the gums, by the bone,




and pull the palate together to meet in the middle


He will then stitch the two sides together to create a palate. The sides will be left open. Skin will grow where there is a bone, so the sides will eventually close up where the middle will not naturally close. The surgery itself with take approximately 2 1/2 hours.



He said he would be putting a suture in Kymee's tongue and then taping the string to her cheek for a day or two. It would look like "he had not quite finished surgery." Then in his words, "We could pull the string if Kymee stops breathing."


Emylee suggested making a shirt for Kymee which reads, "In case of emergency, pull string."




(This picture is the least horrifying one I could find on line)


I'm not sure which scares me the most - the fact that she might stop breathing - and I would have to DO something, or the fact that her tongue will be tied down.


So, being the people that we are, Emylee and I both went home and researched this "tongue thing." What we found is that is is preventative treatment. One of the challenges of Cleft Palate Repair Surgery is that the tongue will snag on the sutures, hurt it, and the baby can swallow her tongue and choke. Stitching the tongue down prevents this.


Kymee will get her tongue pierced before Mandy - image that!


Then Dr. Obaid said we may be able to take her home in 24 hour! SERIOUSLY??? I don't want to take her home if there is any chance that I have to "pull the string!" We can take her home as soon as she is eating on her own. Let's keep the food and pain meds coming through an IV - for Kymee and me!




After surgery, Kymee will eat from a 1/2 oz syringe for 3 weeks. Then she can go to her cup but no bottle.






She will wear "No-Nos" for around 6 weeks so that she can't touch her mouth or put anything in it.





(Here is a picture of Kymee with No-Nos on from her first surgery. Because she always scratched her face with the No-Nos, Emylee suggested that I put leg warmers over them. I'll do the same this time.)











I know countless children have had this surgery - but they were't my kid. I won't lie - I'm nervous and scared. I'm excited for her to get it done and over with, but it doesn't make me worry any less.



I take comfort in knowing God is in control. He gave Kymee to us, and He will give us courage and wisdom to care for her needs.


Psalms 55: 22 gives me comfort.


Cast All Your Anxiety
























Thursday, March 31, 2011

The Smile which Blessed our World



This is the Smile which blessed our world
















Dr. Obaid is the surgeon
who God chose
to change the smile
which blessed our world















This is the surgery,that Dr Obaid performed,
Which changed the smile,
Which blessed our world



This is God's healing
from the surgery
that Dr Obaid performed
Which changed the smile
Which blessed our world













This is the smile
after the healing
from the surgery
that Dr Obaid performed
Which changed the smile
Which blessed our world













This is the girl
who God will use
to bless not just our world
with her smile;
But the whole world
with her story.

Tuesday, March 29, 2011

First of Many



Kymee's First Day without the Bottle

Boo. She loves her bottle. It will be sorely missed.

As sad as it is to see it go - it has to be done. 2 1/2 weeks til surgery - she NEEDS to drink from a cup. She is ready. Kymee is growing up so much. She's had so many firsts this last couple of weeks.



First Curls
Yea! Hair.

First time saying "Mama"&
First time giving kisses on demand!
o

First time to sit without support

First Time to pull herself up

First Artichoke


First day completely on the cup

Kymee loves to eat!


She bangs on her highchair when she wants more.

She's a mess! She sneezes avocado all over her face.

So here comes the cup. Boo.

She HATES her pink noseless cup - she screams when she sees it coming. So . . .
I offer her a sippy cup. I have read a blog by a mom with a baby with cleft palate who says her baby learned to drink from a sippy cup in which the flow stopper has been removed. So I figure I'll try the same. No luck. Kymee pushes the cup away, and purses her lips together.

I take the lid off the sippy cup and try to get her to drink from it. Boo. She screams, as if I have offered her pickle juice.

She sees that I am drinking from a real life water glass, and reaches for it. "Good idea," I think. "She can drink like Mommy." I put water in mine, and formula in hers. She drinks. No screams. Yea.

Boo. The formula squirts out of her nose as fast as she drinks.


Thankfully, Laurie, the ECI worker is coming today. She says we should try a new cup. Unfortunately, after looking in her car, she doesn't have one to give me. She finds a different cup - one she has never used with a client before. But, we can try it. It looks like Kymee's bottle, but she drinks from it like a cup. Here's the cool part . . . You can control the flow of liquid - slow, medium or heavy. I adjust it to slow - we can move up from there.
Infa Trainer Cup
Kymee takes right to it. she drinks 10 oz. (The cup only holds 4 oz, so I have to keep refilling it) I throw a towel over both of us to catch the drips, spills and nose squirts. But to my pleasant surprise, almost no run off fluid. It actually went down Kymee's throat! She's drinking!



She drank ALL her formula from the cup today - NO BOTTLE! All from a happenstance the therapist had in her car. Praise the Lord - maybe the next two weeks won't be a stressful as I thought they would be.

Monday, March 21, 2011

Yoga with Kymee & Kermit



Kermit Does Yoga

Bend It Like Kermit Yoga 455x450 Bend It Like Kermit   Stretching for Health


Kymee does Yoga

Plank Poise


Downward facing Dog


Upward Facing Dog


Cow Poise


Modified Reclining Angle Poise


Locust Poise


Happy Baby Poise