Princess Cloey: We Made It

Monday, July 19, 2010

We Made It

we are here. The day started out really good, we had some help with Cal & Lainey so Ty was able to take us to the airport & get an escort pass to help me get through security. Just to give you an idea we had about 10 bins and her wheelchair, all medical supplies and machines that cause some kind of red flag and have to be tested, so I was real glad he was there to help. unfortunately the day went downhill from there. Cloey was having a hard time breathing on the airplane so I got her ventilator from the over head compartment. it's heavy so I had to have help, and unpack it in the aisle, only to realize the cord from the vent to the battery was missing, so I packed it all up and sat back down and turned her oxygen up hoping that would help, it did for a while but turning it up made the battery die sooner. I didn't do anything at first because I wasn't sure what I would do and I was hoping she would come around. She got lethargic and sweaty and her stats dropped to 78 (bad). so I got back out and got the ventilator down, it has an hour of internal battery and we had over an hour and a half left. so I hooked her up, leaving my only option to bag her (basically CPR) when the battery died if she was still doing so bad. Thankfully, her stats came back up to the low 90's and when the battery died she was stable enough to make it the rest of the flight. It was super scary though, my hands were shaking.

So we got off the flight and went to baggage claim. We have 4 bags that are 50lbs each, plus what I had brought on the plane. A skycab was quick to help and took me to rental car so that was cool, but when I got there the company would not honor my reservation. Long story, but basically even though they accept debit cards & I had no problem making the reservation with it & I was willing to pay in advance with the debit, they would not give me a car without a major credit card which I don't have. The other four counters were all out of cars. One said they might have one in 2-3 hours. so I had to load all the bags on a cart and push cloey and the bags to the other side of the parking lot. they fell 3 times & I could barely lift them. Once somebody helped me pick them up though. so I get to the other side and all 4 of those companies are out of cars as well. I had to give cloey a feeding so I did that while I tried to figure out what to do, while doing that I noticed that her diaper had leaked. I had to leave the bags and take her in the bathroom to clean her up, change her clothes and wipe down the chair. At this point I was pretty frazzled. I hadn't eaten since a bagel that morning. It was 7 here, about 4 there. This also meant I was now driving from Columbus to Cincinnati in the dark. I called Ty and told him everything and started crying because we couldn't come up with anything to do but wait. I hung up and decided to try to make it back across the street to the airport with Cloey and all her bags so I could at least eat and then try to figure something out. I made it almost out of the parking lot when a lady working at one of the counters chased after me. She had heard me crying to Ty and called her manager and got me a car. (yay!) the only problem now is it was quite a bit more $ and I have to try and get the $ back from orbitz for the one I had reserved. It took me a long time getting all of the stuff into a car instead of an SUV, but I did it, found a McDonalds and was on the road. It took about 2hrs to get here.

It was now dark. All the handicapped places were taken so I was parked in the back of the lot. I have been warned by several people that this is not a good neighborhood. I asked the guy at the counter for help, but he said he was the only one working & couldn't go out. So I decided to take Cloey up to the room and leave her there by herself while I went & got the bags. I need all of her medical supplies to set her up to sleep so I had to get the bags there was no way I could wait till morning. We were almost to our room and Cloey threw up all over herself and the hallway, I took her shoes off (they were soaked & I didn't want her to track it all over) and pulled a table over the puke and had to tell the guy. I took Cloey in the room to clean her up & then we went out to get the bags. I was afraid if she puked again it would get in her trach and no one would be watching her. we got all the bags in and then I gave her a bath, did her night care & set all of her machines up.

Then as I got my netbook out to post this, I found my broken camera. The screen is all smashed. It's not a super nice one or anything but we had been borrowing my grandma's for a long time and finally been able to buy this one not even a year ago, so I'm totally heartbroken about it.

Sorry this post is such a rant, It is 2:30am here and Cloey's first appointment is at 9am tomorrow, so I should be sleeping. But I am feeling pretty beat down right now. I know it's at least partly because how she acted on the plane confirms her dependency on the vent. I had really though she'd be able to do it on just oxygen. I am sure in the morning I will see more of the things that didn't go wrong. Most of what did, is material and will be forgotton soon enough, being here to help Cloey is what will last. At the end of this horrible day my heart smiles just a little to know we are taking Cloey to the best to give her the best life possible and I will be able to do that for her soon now.
Goodnight~

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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.