I have had several posts in draft on my computer for a couple of weeks now, so this is one of three that are going up tonight. So...keep reading!
Our miracle granddaughter, Kallie turned four years old on Easter Sunday! It seems like only yesterday she turned our lives upside down, yet seems like such a lifetime ago at the same time. The story of Kallie is truly a miracle and what better time to celebrate a miracle than during Easter!
Kallie has had a flair for the dramatic right from the beginning! When her mom was laboring to get her here, she was being very stubborn and despite Tama's best efforts, she just would not turn and come out. They moved Tama to the operating room and began to prep her for a C-section when Kallie decided at the last minute to make her grand appearance. I guess she realized they were going to vacate her one way or another!
Our Kallie was born with a chromosome abnormality called Turner Syndrome (TS). The first miracle of Kallie is that TS only affects about 1 in 2500 conceptions and only about 5% of those conceptions make it to a live birth. An even smaller number of girls born with TS (about 3% of the 5% born) have a heart condition known as coarctation of the aorta. Kallie is in that 3 percent and was born with severe long segment coarctation of the aorta. This means that her aorta carrying blood from her heart was kinked to such a point that the blood flow could not reach the lower part of her little body and her heart could not pump the blood through. We didn't learn about this until after she went into heart failure at 6 days old.
Kallie was very lethargic that day and not eating like she should. She began to turn a sickening color of gray and her parents took her to the ER near their house. By this point, she was so severely dehydrated, they had to poke her TEN times to find a vein to start an IV. They intubated her (she wasn't breathing when they got there) and worked very hard to save her little life and stabalize her enough to transfer her to St. Luke's NICU in Boise. Kallie was a very sick little girl and noone could tell us why.
Are you ready for a medical lesson?... You see, when a baby is in the womb they do not breathe with their lungs. Instead of blood flowing out of the heart and to the lungs, there is a vessel called a PDA (patent-ductus arteriosis) that bypasses the lungs and sends the blood to the rest of the body. In a normal baby, this PDA closes about a week after birth and is no longer needed. For Kallie, when the PDA closed she could no longer get blood flow to her body because her aorta was blocked. This is when she went into heart failure.
Some of these next pictures may be disturbing to some.... but they are part of Kallie and her story is not complete without them. Skip ahead if you'd like...
Sometime during her time in the NICU in Boise, we heard from one of the nurses that was in Nampa at the first ER that when they brought Kallie in, she had little wings on her back and the doctors pulled them off and said, "you aren't going anywhere just yet, darlin'" Chills went up my spine when I heard that and I will never forget that feeling.
The doctors gave her a medication that reopened the PDA and she was to stay on that until they could repair her aorta with surgery. Kallie stayed in the NICU in Boise for 5 days to gain strength and let her little body stabilize. She was sedated and on a ventilator all of that time and her parents were not able to hold her, but they never left her side. During this time the cardiologists were talking with the heart surgeons in Salt Lake and Portland and deciding which course of action would be best for Kallie.
After several days, Kallie was strong enough to be flown via life flight airplane to Primary Children's Medical Center in Salt Lake ("Where angels walk the halls"). More miracles happened... The helicopter was unavailable so they had to take the life flight airplane. This made it possible for her mommy to be on the flight with her and stay with her every step of the way. Daddy followed soon after in the car with Uncle Travis. Aunt Robin and their kids were right behind. And then, another miracle.... Papa and Aunt Weezie were at the airport ready to return to Phoenix when we learned they were taking Kallie to Salt Lake. I called them at the airport and gave them the news. They were able to change their flight at the last minute (at no charge!) and land in Salt Lake to be there with Kallie. I stayed in Nampa one more day and got things arranged at their house and Abbie and I headed for Salt Lake the next morning.
Kallie was in Primary Children's for two days while they stabilized her and prepared her for extensive open heart surgery to repair her aorta. The doctors and surgeons at Primary Childrens were wonderful and we are forever greatful for the talents and knowledge that they have been blessed with that allowed them to save our little angel. You can certainly feel a special spirit there!
After her surgery, she had a little vest that protected her chest cavity because they left her chest open for several days "just in case". We called it her 'bull riding vest'. Uncle Marty would be proud! After a couple of days, they closed her chest. It is still disturbing to me to see chest x-rays of Kallie that show the little wires used to put her sternum back together!
Nothing to do now, but wait for healing and recovery!
These are some of the drugs and machines that kept Kallie alive and comfortable.
Kallie stayed in Primary Childrens for several weeks. Healing and learning to do the things a healthy newborn does (like eat). Here's another medical lesson for you.... When an infant is intubated, they lose their instinct to suck and develop an aversion to things in their mouth. So Kallie had to learn to eat all over again. While Kallie was healing and recovering, there were many specialists that came to visit and teach us. Tama and Karlo had to take CPR, Tama had to learn how to insert and care for Kallie's feeding tube, etc. It was during this time we learned that Kallie has Turner Syndrome. It would take a whole nother blog to tell you all we've learned about TS over the past four years so please visit http://www.turnersyndrome.org/ to learn more about it and about these special girls.
There is so much more to the story of Kallie's first few weeks. If you would like to read more about it, you can visit her care page at www.carepages.com and search for kalliegrace.
Since then, life with Kallie has been a whirlwind of activities and various hospitalizations! Kallie has had what seemed like her own medical staff. She had OT, PT, Speech Therapy, etc. She has had angioplasty twice (stretching her aorta), she has had her ovaries removed, her appendix taken out, and tubes put in her ears. She had her tonsils and adenoids removed. Not to mention all the 'normal' childhood emergencies and illnesses. But through it all.....she smiles!
The biggest news this year has been that Kallie recently went to the cardiologist for her "big" check-up and the news was wonderful! Dr. Walker even put her on a yearly check-up now! We are so thankful she is doing so well.
Kallie always brings a smile to our faces!
We have been blessed to be able to attend the National Turner Syndrome Conference on two ocassions. In 2008, we went to Raliegh, North Carolina and last summer we went to Portland, Oregon. These conferences are wonderful and a great learning experience! It is great to see so many women and girls that share the same diagnosis and have learned to live with it. We are skipping the conference this year for several reasons. It is in Indianapolis, over the 4th of July. Tama is having a baby in June. New jobs and a recent move on Grandma's part. Just a lot of obstacles this year. But 2011 conference is going to be held in Las Vegas and we are already making our plans!
Kallie will continue to have obstacles to overcome as life goes on. There are many different facets of TS and we learn of new challenges all the time. She has daily injections of growth hormone. She has some ear troubles again and her parents are working with the doctors right now to get those under control. She is such a good sport through it all. Don't get me wrong, life is not all fun and roses with Kallie. She can be very moody, does things on her own time frame, and will not be rushed. She has several OCD tendencies. But we wouldn't trade her for the world!
Happy Fourth Birthday, Sugarbean!! We love you!!
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