On March 28, 2011, we were blessed with a beautiful baby girl we named KyLin Bella Kelly. We found out through ultrasound at about 20 weeks that she had a congenital heart defect. After about three appointments in Salt Lake and lots of ultrasounds, they determined KyLin would be born with truncas arteriosus. This is a heart defect where one large vessel, instead of two separate vessels, leads out of the heart. Also, the two lower chambers of the heart are missing a portion of the wall dividing them.
So we were prepared for a surgery at birth and then future surgeries as she will grow out of the replacement valves. It was pretty rough on J.D. and I as we were digesting the news and learning how to cope with all that this entailed. We did a lot of fasting and praying. We felt/feel so blessed to have the gospel in our lives and a loving Heavenly Father who we knew loves us, and more importantly loves Kylin, and who we could turn to for support.
So the weeks leading up to her birth and the ones following were rough, stressful, happy, sad and spiritual. I'm going to attempt to tell our story...
My mom, Jade, Lane, and I went to Salt Lake a week before my scheduled C-Section "just in case". We were lucky enough to have a room at the Ronald McDonald house which we kept the whole time. And can I just say, thank goodness for the Ronald McDonald House! It was AWESOME. A different organization comes in each night and makes dinner that you are welcome to, and then there are 4 fridges and pantries packed with food. So needless to say, we were grateful for the healthy meals and all the food that we were able to eat. It saved us a lot of money, plus it was just one less thing to worry about.
March 20-March 26So that week passed uneventful (as far as a new baby). We shopped a little (okay, a lot), we went to the zoo, and to some parks. Jade and Lane loved going to the zoo. Here are some pictures we took...
Grandma and Lane on the train...
Riding in the car..... gotta love these two cuties......
Grandma with Jade and Lane sitting on the zoo bench
Petting the momma tiger
Trying to get a picture with the Tiger walking above us....
Lane pointing at the animals.... He loved it..
Big ol' pregnant me with my two kiddos
Drinking from the lions mouth....
March 25, 2011
Brooke and J.D. both came down on Friday. I was so happy to see both of them. My sister is amazing and has always been there for me, and it just made me feel better to have her there. My husband is amazing also and he gave me such a feeling of support and comfort. This whole ordeal was really rough on J.D. but in the words of my sister, "You guys got hit with this trial, and J.D. just flourished. I really saw a different side of him, with the way he handled everything. I always knew he cared about you and your family, but I just gained so much more respect for him as I watched him worry, pray, fast, study about the defect, and have so much love and compassion for someone he doesn't even know yet."
March 26, 2011
Mom and I wanted to get our nails done, so we got fake nails and Brooke and Jade had theirs painted. It was the funniest thing ever watching Jade get her nails done. She was so proud, and she kept talking to the gal doing them who was Chinese and couldn't understand anything Jade was saying!
Mom, Brooke and I left J.D. and the kids at the Ronald McDonald House....
.....and we went out for a girls night (dinner and chatting). Can I just say that I love my mom and sister...
Brooke and I in front of the resturant...
March 28, 2011
My C-Section was scheduled for 7:30am. J.D. and I had to be there about 6. I'm not sure that we slept at all the night before. I even woke up early and put make-up on! It's the first time ever (my other two came in the middle of the night and I didn't have time (or energy)). My dad and Marc and Pam came down last night so Jade and Lane stayed with grandparents. They all arrived early before I even got wheeled into the operating room.
I really appreciate my dad. He is good support and always knows just what to say.
wow, I look awful (even after taking the time to put make-up on!)
Marc really hates hospitals, but he was such a trooper the whole time. He played a lot on the escalators with Jade and Lane (-:
J.D. getting all suited up. Wow, what a hottie! He learned and knew so much about hearts during this whole ordeal, he could practically be a doctor. Okay, not really, but he did study and learn a lot, I'm so grateful and blessed to have him.
Pam and Lane taking pictures...
This was so funny! Marc had fallen asleep and Lane was taking pens out of his shirt pocket and drawing on him!
I was super nervous this go-round and had to keep praying the whole time they were prepping me in the O.R. I was so relieved when I was starting to go numb and they let J.D. come in. The surgery went really well and in about 15 minutes they were pulling baby KyLin out. I didn't even get to see her because they immediately passed her through the window into the NICU where they started to assess her heart and general well-being. J.D. said (because he watched the whole operation) that she was beautiful and the nurses kept saying "tons of black hair and killer eyelashes!"
I was taken back to my room for "recovery" while KyLin stayed in the NICU.
taking good care of mom...
J.D. and my mom got to go in with KyLin so they text us some pictures.
daddy's hands...
the first view I had of my daughter..
You can see the concern on his face
Because of her heart defect, KyLin was taken right over to Primary Children's. But before they "life-walked" her over there, they stopped in my room and we got to see her. J.D., Guy and Marc were also able to give her a blessing. Let me just say how grateful I am for priesthood blessings and worthy priesthood holders who can give those blessing. It brought such peace and strength to us. I know that we truly experienced The Healing Power of our Father in Heaven through these blessings.
I was amazed at how much Jade already loved her baby sister. She was sad she couldn't hold her.
Lane all but crawled in with his new sister. He loved her already, too.
It was hard for me not to be able to hold my baby....
Getting baby KyLin here was a huge blessing (as all new babies are), but in the days following her birth, we were to see so many more blessings in our life. One came later that evening when J.D. and I went to Primary to visit KyLin. Before she was born they told us she wouldn't be able to breast feed before surgery, but she was doing SO well that I was able to start breastfeeding that night! So not only did I get to hold my little girl, but I was able to feed her! And what a little champ she was, she just latched on and did so well right from the beginning.
She was doing so well that had we not known about her heart defect prior to her being born, they probably would have sent us home. Her vitals were all really good and her oxygen sats were even high. She never did turn blue on us. So another blessing - the ultrasound tech in Idaho Falls took the time to look close enough and notice that the heart didn't look quite right. How grateful we are for her and her concern to refer us to someone who could take a better look.
March 29, 2011
KyLin's surgery was scheduled for the following Monday because that was the soonest available spot. So Brooke left, Marc and Pam took the kids home with them, and my parents decided to stay one or two more days. A crazy thing happened, though. My dad and J.D. both got really sick pucking and well, crapping, so we wouldn't let them come up to the hospital, so my mom and I were on our own for a few days. Now, I have always been grateful for my mom, and I have always known she is wonder woman, but I was soooooo grateful to have her there (this entire time, really). She is just such amazing help and the most un-selfish, caring, hard working person I know. It was quite a long walk from my room at the University to KyLin's room at Primary's and she wheeled me down there every 2 hours so I could nurse and just basically waited on both of us hand and foot, and got little to no sleep in between. Sleep was hard to come by for everyone because whenever we were in my room the nurses were poking and prodding me and whenever we were in KyLin's room the nurses were poking and prodding her. (Nothing against the nurses though, because they were AMAZING!) It takes a special person to do that job, and all of our nurses for sure were special people.
Most amazing woman
I'm not sure what day it was, but KyLin was moved up to what is called the "floor" (not the Cardiac Infant Critical Unit (CICU) anymore, but an individual room on the cardiac floor) because she was doing so well. She would stay here until surgery. This was awesome because now she could have more than 2 visitors at a time, and everyone could hold her! (including her siblings, who couldn't even come in the CICU)
April 1,
Grandma Afton, Jade, Lane, Loretta, Lexie, Addie, Tena and Nena came up for the weekend to visit us. Another blessing: a friend of mine from Idaho Falls, Alicia Horton - her husband is the manager of the AmeriTel Inn in Idaho Falls and he got us some free rooms in Idaho Falls. My mom and I were able to benefit from them when we first came to Salt Lake and now my family was able to stay and visit us. It was nice because the kids were able to go swimming and they got free breakfast every morning.
Anyway, I was so excited for Jade and Lane to come back because now they could finally hold their baby sister....
Jade especially just could not get enough of her little sister. She made it a point each morning to tell Grandma and Loretta that before they went anywhere, she had to come up and hold her baby sister.
Everyone else was excited to get some lovin' in also....
Pretty sure Nena needs/wants one...
Aunt Retta loves the new baby...
Grandma Afton could have sat in that chair the whole time holding and cuddling that little baby, and she would have been plum happy.
Addie is a little nervous, but doing so good!
and we got our first photo as a family! (blurry because of the cell phone)
April 2-3
The Saturday and Sunday right before KyLin went into surgery was General Conference. Every time J.D. and I turned it on we heard a talk that made us cry. Our favorite was Elder Richards talk on pain. It gave us such comfort as here we are with a baby about to go into surgery, and that is just what he was talking about. We too, felt that KyLin was not alone, and that our ancestors and those who had gone before her were there with her, helping her through.
Click on this link to hear his talk
http://lds.org/general-conference/2011/04/the-atonement-covers-all-pain?lang=engApril 3,All our family came back down to give last minute hugs and kisses before KyLin went into surgery the next day.
Perfect bare chest, with no scar
Jade all hooked up, just like baby sister...
I sure love my baby girl
Monday April 4, The Day Of Surgery
This was probably the hardest day yet. J.D. and I spent the night with KyLin in her hospital room. She was scheduled for surgery at 7 a.m. About 6 a.m. that morning, Dr. Kaza, who was the surgeon to perform the operation, came in and talked to us. Now let me tell you, Dr. Kaza is an amazing surgeon and an amazing person. We think so much of him, and owe so much to him. He told a friend of ours (who's baby had a heart surgery done by him) that people have callings in life, and this is his calling, and that he recognizes the hand of God in being able to do what he does. How grateful we are for him. He is also one of the huge blessings that we recieved! We know that Heavenly Father was with him in performing surgery on our little girl.
Dr. Kaza told us that there were three things they were going to do with our little girls' heart. Number one, they would close the hole between the two ventricles with a patch (we have the piece of material the patch was taken from), number two they would separate the upper portion of the pulmonary artery from the single large vessel, and number three they would implant a tube (conduit) and valve (from another infant) to connect the right ventricle with the upper portion of the pulmonary artery — creating a new, complete pulmonary artery. After he explained this J.D. said "well, sounds pretty easy, right?" Dr. Kaza laughed and said that while it wasn't easy per say, he does this specific surgery about once a month, and he assured us that he would take care of KyLin as if she were his own. Thank goodness for Dr. Kaza!
After he left, things got moving and about 7a.m. someone came to get us. J.D. was able to hold KyLin as we walked down to the surgical floor. We were met by the anesthesiologist who gave us a little tour of where the waiting room was and everything, and then all of a sudden he said, "okay, give her a kiss and hand her over. We will see you after surgery." I was not prepared for this! I felt a little blindsided even. So, J.D. and I hugged and kissed her and then gave her to the anesthesiologist. When the door closed behind them, J.D. and I just grabbed each other and cried.....and cried.....and cried. We are so blessed to have each other to hang onto in times like this, I don't know what I would do without my wonderful husband. I wouldn't have been able to handle something like this without him.
And then it was just a waiting game... We had some awesome friends who were there with their little boy bring J.D. and I some breakfast. And about an hour later our parents and our children arrived. You know, there was nothing that our parents our Jade and Lane could do, but having them there with us was HUGE. The emotional, spiritual, and physical support from our parents and kids was very meaningful to us at that moment.
Thank goodness for these little cars! The surgery took about 5 hours, and Jade and Lane played in these the entire time! Up and down the hall, chasing pretend cows in them that grandpa Guy kept telling them were getting out...
Bonnie, our surgical nurse- who was GREAT, came out a few times and gave us updates about the surgery. And finally about 5 1/2 hours later, Dr. Kaza came out and told us that everything went well and they accomplished what they set out to do. We were so grateful and relieved and happy. J.D. told Dr. Kaza he felt like he could just hug him and Dr. Kaza said, "No, I'm from the South, we don't hug, but I will shake your hand."
They told us we could go see KyLin in about 2 hours. Now, I had never seen a baby post-op with a heart surgery, but I suppose nothing could have prepared J.D. and I for this....
If this picture shocks you, just imagine what it was like for the mom and dad, grandpas and grandmas who walked in and saw it. Takes your breath away and makes you cry.
She had a ventilator in breathing for her, chest tubes in her belly draining fluid, multiple IVs giving fluid and medication,
Me looking at my sweet baby..
They leave thier chest open because there is so much swelling and their chest is so small that they don't want to close it. Also, in case they have to go back in, they don't want to have to open it up again.
J.D. wouldn't leave her. Even when the rest of us went to eat dinner, he stayed. He wanted to make sure that each new nurse coming on shift knew EXACTLY what was going on with his baby girl, and that they were doing EXACTLY what they needed to. He sang to her, alot. A Child's Prayer will always be a special song because that is what he sang/hummed to her over and over in the hospital.
April 5th, The day after surgery
When I got a phone call from Bonnie early in the morning (we were still eating breakfast at the Ronald McDonald House), I was pretty nervous but soon found out I was about to recieve another blessing. They told us it would be a few days before they closed her chest up, but Bonnie was calling to tell us that she was doing so well and the swelling had gone down so much that Dr. Kaza wanted to close her up this morning. So we jumped in the car and sped to the hospital. This time she was only in surgery for about 3 hours.
They had this little class that siblings could go to and learn a little bit about what thier brother/sister was going through in surgery. Jade and Lane went and got to dress up like doctors and color a doll and dress it up as their "patient". It was pretty neat.
So they played with that a lot while we were waiting for KyLin to come out of surgery.
And of course we still had the little cars, thank goodness for those.
Dr. Kaza came out when KyLin was all sewed up and he saw Jade dressed up as a Dr. He thought that was pretty awesome, and from then on when he saw her he always asked her about it.
April 6th,
KyLin was able to have her ventilator taken out, so therefore we could hold her again!
April 11, 2011
Another blessing: They told us we would be at Primary's for at least 3 weeks after surgery, but exactly one week after surgery they were sending us home! Without any medication or oxygen. Our little KyLin was recovering so fast and doing so well. We felt so blessed!
Grandma Pam was there to help us all come home. Thank goodness for Grandma Pam, she was a ton of help, a ton of the time. Don't know what we would have done without her!
Going home!
IN CONCLUSION....
I just want to say thanks so much for all the many people who supported, visited, and prayed for us. A huge thanks to Dr. Kaza and all the amazing staff at Primary Children's. We are so gratefully and appreciative of all that you did for us and our baby girl. We don't look forward to being there again, but we know we will be in good hands..
A super HUGE thanks to grandpa Marc and grandma Pam and grandpa Guy and grandma Juanita. We were a little worried that Jade and Lane would feel a little left out when mom and dad started spending so much time in the hospital with the baby, but it was more like "the baby was born and grandpa and grandma came to party". Thanks so much grandpa Marc and grandma Pam and grandpa Guy and grandma Juanita for driving to and fro Salt Lake a million times, and for taking care of our children when we weren't able to.
A huge thanks to all those in our family and ward who did so much work at our house while we were gone. You will never know how much everything meant to us. We are eternally grateful for all you did.
Below are just some random pictures from in the hospital and also what our kids were doing while not with us:
perfect bare chest, before surgery
The Grandpa's and Grandma's took Jade and Lane on a train ride. I'm pretty sure fun was had by all, but Grandpa Marc is really the train guru.... he probably loved it the most...
So this summer went by super fast! We had a great summer and have been super busy. Let me try to re-cap some of what we have done......
And even with all the malling KyLin takes from Jade and Lane, she loves them too......
Jade has been such a big helper. She loves to take care of KyLin so that I can get stuff done. I walked into the living room one day and saw this happening.....
We got to stand on the road and catch candy....
