Princess Cloey: July 2009

Thursday, July 30, 2009

Cloey's summer so far

The Medical Stuff- After Cloey's bleeding episodes we saw a hematologist who after doing some blood work explained to us that Cloey is borderline Von Willebrand. which basically means that she doesn't clot very well and so will bleed and bruise easily. That's makes a lot of sense since she does bruise easily, and has had to have a few blood transfusions during surgeries. Because she has all of the plastic devices in her (ear tubes, trach, g-tube, de-flux) irritation turns to bleeding real quick. It mostly means we need to be aware of it and have extras blood in surgery. She had some much needed dental work done in the hospital and had a real hard time waking up in recovery, she had an irregular heartbeat and they had to hook her up to an EKG and call the on call cardiologist. After about three hours she was stable enough to come home, but it looks like she is no longer able to come out of surgery on her own and will need to be on the vent in the future. She had a case of pneumonia that thankfully she did not feel horribly sick, did not go away for six weeks. She had to have more oxygen and three round of tough antibiotics before finally kicking it. It was a lot of back forth to hospitals and doctors and getting up in the night, a lot of times her nurse, an on call doctor, and I had to work to keep her stats up. She has been having a real low heartbeat at night, so her vent setting have been raised to almost full support and she wore a heart monitor for two days (we will have the results in a couple of weeks).

The Other Stuff- We went to a ward pool party and I expected cloey to be pleasantly distracted talking to people, to care that she could not go in the pool. That was not the case. First she wanted to put her feet in and then sit in (Cloey WILL drown if her trach goes under water, so there is no swimming for her). Then she did something she has never done before, she said "I want to swim like the other kids" I tried to just talk to her and say, well the other kids don't have trachs and you do so you can't go in or you will have to go to the hospital, I'm sorry. or something similar over and over again. She just kept saying no and pulling away from me and then said "I don't want a trach anymore!" I wanted to cry. needless to say we won't be taking her to any pool parties anymore, it was rough. The positive though, is that shows how far she is coming cognitively. She has also started activity days at church (kinda like girl scouts) and special olympics. She will be competing in Bocce Ball this fall.

Saving The Best For Last- A super sweet cousin of ours apparently nominated us for a free photo shoot for a family with a critically ill family member, and Cloey was chosen! J'lynn Mak Photography generously donated a lifestyle photo shoot to us. we went to Anthem park and had a lot of fun, stay posted for the results, we can't wait! Thank to Melinda, Joanna and whoever else made this possible!

Some issues Cloey has faced

POTS
Von Willebrand
Ventilator dependant (12 hours)
bone anomalies
numerous infections
hypoglycemic, anemia, malnutrition
excema
at risk melonoma "abnormal birthmark removed"
intestinal deformity
tracheostomy
sleep apnea
sub mucus cleft pallette
esophegial reflux
VSD (hole in her heart) & arythmia
gross & fine motor skills delay
"lazy" eye/ glasses
spinal stenosis/fusion
bladder surgeries
sensory integration disorder
speech/motor planning delay
tonsils and adnoids removed
10 sets of ear tubes
mental retardation
siezures
Failure to thrive

The birth of a miracle

A Mother’s Story
A tiny purple foot. That’s all I could see. There was no, “it’s a girl,” or no “oohs and aahs.” I wasn’t holding her. The room was too quiet. No baby crying – just fast, technical talk between the doctors and nurses. This was the first time I had given birth, maybe this was normal. I just wanted to hold her, but all I could see was a tiny purple foot – shaking. I remember thinking that she must be cold.
Finally a nurse was bringing her over to me – wrapped in a blanket. I thought she was going to hand her to me, but instead she just said, “Kiss her forehead. She has to go upstairs.” I looked at her new daddy and said, “Go with her.” I think he was relieved not to have to make the decision between wife and daughter himself.
As he left the room I realized the prompting I had received months before to be sealed in the LDS temple (married not only for time, but also for eternity, so that we and our children can be together forever) was in preparation for this moment. I found comfort in knowing that if she didn’t make it, I would have the opportunity to raise her after this life.
Eventually, I was taken upstairs to see her. Her dad was with her. He put his arm around me and I reached into the clear little box and touched her hand. She was covered in tape and wires. Her eyes were shut and she wasn’t moving. Ten seconds passed – maybe – and a helicopter team came rushing in, with all the technical talk again. I asked what was going on. Someone held a paper in front of me with a diagram of a heart on it and started to explain what was wrong with hers. They said she was being taken to Phoenix Children’s Hospital.
I wasn’t listening. I just watched them as they lifted her tiny body into another box and took off running. Her protective daddy asked if he could go with her and they said no, he would have to follow by car. He kissed me and off he went, along with his dad, to be with our new baby girl.
At Phoenix Children’s Hospital Neonatal Intensive Care Unit (NICU), her concerned father was told Cloey had a coarctation of the aorta. She was on a breathing machine and was scheduled to have a surgery the next morning. The doctors showed him the x-ray that showed a hole in her heart. Acting on faith, Cloey was given a blessing by her dad and his grandfather. He had never given a blessing before, and had only been ordained an Elder (received the power and authority to give such a blessing) a few months before. I was not there, but was later told by a nurse it was a very powerful experience. She said several nurses paused during the blessing – unheard of in the NICU. The words of the blessing were more than an new dad with a heavy heart could have uttered on his own. They had to have come from a loving Father in Heaven who was mindful of the new challenges our family was facing.
Cloey was born on March 25, 2001 at 3:13 p.m. at Desert Samaritan Hospital in Mesa, Arizona. Within hours, both she and her daddy had left the hospital. Very early that next morning – before the sun came up, I called my husband. I was crying – lonely, and unsure of what was happening with my new baby – so he came back to be with me for a short time. By 10:30 a.m. on March 26, I had checked out of Desert Samaritan Hospital and was on my way to Phoenix Children’s Hospital to see Cloey. When I arrived, she was the biggest baby there and was right by the window. For that I was thankful.
Sometime that day, they ran another echocardiogram of her heart before taking her to surgery. The hole that was there the day before was gone. Cloey would not need the surgery! It was a real life miracle. The only thing that had been done to Cloey between the x-ray with the hole and the one without, was the blessing she had been gien. I knew then that the Lord truly does answer prayers, and that the power of the priesthood is real.
Cloey spent the next 14 days in the NICU. We were right by her side every day, and would stay until 1 or 2 a.m. We would go home briefly, eat and sleep, and return by 7 a.m. each morning. We read to her, played musical toys for her, talked to her and dressed her in her own clothes.
At one point, when they were trying to wean her off the breathing machine, she crashed. Alarms went off and they told us to step back. We thought we were going to lose her. Three days later when she was successfully breathing on her own, one of the doctors told us, “She is the master of her own destiny.”
Around this time, the geneticist pulled us into a room off of the NICU to give us the results of some blood tests they had taken. We thought this was just procedure. We later learned the blood tests were ordered because of her “dysmorphic features”.
The geneticist asked us to sit down. We held hands. He told us Cloey had an unbalanced translocation duplication 16q22 monosomy 14q32, to be exact. He wasn’t sure what to classify it as because he had never seen it before. But he was sure she would be severely physically and mentally delayed. He told us that it would be significant. She may never walk or talk or even know who we were. We both cried.
Until that moment we thought that this NICU stay would be our trial. As soon as she was better we would go home and this would all become a distant memory. We really had no idea something was “wrong” with her. All our hopes and dreams were gone for her at that second. Then he said, “You can take your baby home, and I will see you in six months.”
We went out into the hall and told my grandmother what the doctor had told us, and we all cried again. Then we went back into the NICU. As soon as I saw her again I stopped grieving for what she wasn’t and started loving what she was. She was so beautiful and was fighting so hard. She had no idea what we had just heard or that she had limits. She was just trying to be a baby. So we took her home and knew we would do all we could for her.