Appt. with the Geneticist

Yesterday, Mike, my father-in-law Tom, and I went up to Primary Children's to meet the Geneticist Dr. Rope. It is very difficult to get into see him. In fact, when I called 5 weeks ago, my original appt. was for clear at the end of August. We called and had few strings pulled and were grateful to be able to get in sooner. Geneticists are very interesting, and it was really an enlightening hour and half. The information we needed to glean was the likelihood of the heart defect happening again in our family and Mike's siblings and their spouses. Their likelihood, because as far as we know they do not have any defects, is a 5% risk, which is a 95% chance of not. For Mike and I, because of Mike's heart defect and obviously Ryker's, we have a 25-50% chance of having another child with a left-side defect. But if you look at it from a glass half full, that is a 75-50% of not having a child with heart defects. He was very encouraging about continuing our family. We would like to have a normal, healthy baby. But if we were to get another baby with a heart defect, we would pray that it is not severe as hypoplastic left heart syndrome really is. The interesting thing is to that although we are not immediately related to the G families that live around here, I am sure there is a connection down the line. And when we were at Primary's, there was another little boy with HLHS. And we have three known heart defects in Mike's family, and then there is another baby due soon that my mother-in-law was telling me about with the last name of G. And I also believe that one of Ryker's "heart buddies" that still is at Primary's is somehow a G too. So somewhere, there really must be a genetic link. Anyways, we are going to be part of a study and try to learn more about the "genetic link" that we seem to have with these heart defects.

Princess Lilly

I wanted to post a few pictures of Lilly. I always joke that the reason we spell Lilly with two 'L's is because one 'L' was just not enough. We chose Lilly, because after we found out everything about her, I was driving on a Sunday when the song came on "Consider the Lily's of the Field." It seemed fitting for her. Lilly was the tiniest little thing. She was born at 5 lbs. 6 oz. and was 18 inches long. By the time she passed away, she weighed about 4 1/2 lbs. We were told she would never see, hear, feel pain but yet she experienced everything! You would hold her and literally it was the closest feeling and connection I have ever had with the veil being so thin, that you could almost breathe in celestial air. She brought a spirit to our home that the only comparison I can give is walking into the temple. Her spirit was amazing. My doctor told me that there is so much more to her body then just the body. With Lilly, her spirit reigned in her body, not her body reigning her spirit, as we often find with most other people. She truly exemplified love and loving your family. She fought valiantly and there were so many times that I prayed she could pass away because I knew what an earthly struggle her little body was going through to continue to bless those around her. I took her everywhere, she even went to Gardner Village at 1 week of age. I let anyone who wanted to hold her hold her, so that they too could feel of her spirit and pure love. We miss her, and look forward to seeing her and her brother Ryker again someday!

A fun day.

This weekend was a pretty fun weekend. I hail originally from up and down the east coast. I was born in Ohio, moved to West Virginia when I was 10 (we lived a little over an hour from Washington D.C.!) and then moved to Florida for 5 months when I was 17. We then moved to Utah when I was one month shy of 18, and a senior in high school. Well Friday, one of our friends from Florida got married and had a reception out here, and then Saturday, I went to a graduation party for one of the guys I grew up in West Virginia with. The LDS culture where I grew up was very different from most of Utah. Specifically in West Virginia, the people in my ward were like my family. We would all vacation together, we would have parties and celebrate the 4th of July, Halloween, New Years and many many more holidays together. My friends, in the different areas I have lived, are some of my closest family. So today, there were a bunch of different "family" that had come out for my friend Justin's graduation from UVSC or UVU (whichever way you prefer.) It was neat to see everyone, to see how some of the younger crowd have grown, and to just share what has been going on in life since. It was like a family reunion, and I thoroughly enjoyed it. My best friend Abby also had a birthday party Saturday evening, and so it was like having one family reunion after another! So here are a few pictures of some of my "family" from West Virginia!

My website!

For those of you who do not know me personally, I have somewhat of a crafty side of me! I get it from my Mom. Growing up, I remember my Mom having an all-nighter to get ready for various craft-shows or sewing pajamas till 3:00 am, the night before Christmas. So, once I had Lilly, I shelled out some pretty pennies for headbands, hair-bows, and bracelets for Lilly's hair. I studied them once, and thought, "hey, I could make this for a heck of a lot cheaper". And that is where my passion began! I love to make bows. I love to find new ways to make them. I also discovered how to make nursing cover-ups, and baby bracelets. So after some prodding (and I mean a lot of prodding) and a year later, I finally have the website up and running! The website is princesslillyheadbands.blogspot.com. My e-mail is emilygourley@gmail.com of you have any questions! Please feel free to look. The bracelets and cover-ups are not pictured, but hopefully will be soon! I also make little hair bows that are gooped in the hair of the newborn girls at American Fork hospital. It is kind of my way of giving back. I plan to do some for Primary's too, in honor of Lilly's and Ryker's birthdays that are coming later this year. Anyways, feel free to browse! Here is a picture of the cutest little model Mya wearing one of the curly ones!

Kynslee Lamb

It is with a deep sadness that I write this blog. The very first baby we met when Ryker was first born was a little 5 week old baby girl named Kynslee, and her parents Teaa and Ben Lamb. She and Ryker lived side-by-side until he had his heart surgery. She was their first, and was such a sweetheart and such a fighter. She had HLHS among other problems, but was able to be home for some time. Her parents were kindred spirits to us and we all brought each other the empathy and understanding that we all needed. We used to joke that they could be in kindergarten together. Teaa called today to let me know that yesterday, while surrounded by her family and in the arms of her mother, Kynslee earned her wings. They are an amazing family, and it breaks my heart that anyone has to lose their babies. We will miss Kynslee and our heart goes out to her Mom and Dad and other relatives. It seems unfair when we are asked to say goodbye to our children. It sometimes seems like it is too much to ask. I do not claim to understand why, I just have to trust that God knows and sees the bigger plan. Please pray for this family. They are amazing but are desperately in need of some prayers to continue to strengthen them. They have invited all who would like to attend the viewing or funeral to come. Here is the information from their care page:

Viewing Sunday evening, from 6:00- 8:00 pm
at the McDougal Funeral Home on
4330 S. Redwood Road in Taylorsville.
Funeral Monday, April 21 at 12:00pm
at the Taylorsville Stake Center
1350 W. 4800 S.
There will also be a viewing prior to the funeral starting at 11:00am.

My niece Morgan

I do not know if I have mentioned on my blog, but I just want to say how much Mike and I love our little niece Morgan. Now the majority of Uncles and Aunts love their nieces and nephews, and we will love all our nieces and nephews to come, but Morgan will always hold a special place in our heart. One of the reasons is that as many of you know, Mike is an identical twin. When I say identical, I mean INDENTICAL!!! I remember shortly after we got married, seeing Mike and Jason "accidentally" wear the same shirt, same outfit. So it would seem fitting that these two twinners would also have little girls, the same day, both via c-section. That's right, our little niece made her way into the world a few short hours before our little Lilly did. They must have too been so inseparable that they felt the need to come down together. The other reason we love Morgan so much, is that she is the happiest and most loving little sweetheart. She loves all around her, but she seems to hold a special place in her heart for Uncle Mike. Mike's name was one of the first names (besides Mom, Dad, Grandma, and Grandpa of course!) she learned of the aunts and uncles. She has truly helped to keep this family together through our hard times! She is just so smart too. How many 18 month old kids do you know that can dip their French fries into a little cup of fry sauce?! She knows so many words, can sign a lot of those words, and just seems to understand the bigger picture. We love you Morgan!

Update

I have not posted in while about Gracie Gledhill. She is truly a modern-day miracle. Prayers are being answered and she is truly an inspiration to all. Here is a picture of her this morning. She is so beautiful! Her eyes remind me of Ryker's!
They took her off of ECMO after being on it for 12 days. They closed her chest successfully too on Friday, and they have started to feed her. Feeding brings in a whole slew of potential for new problems. Ryker hit just about every one that you can possible hit (chylothorax, feeding tubes tearing his stomach and having a massive GI bleed, just to name a few!) So we pray things go well for her, Thank-you for your prayers, I know they have truly helped with the miracle!