Thursday, March 19, 2009

Learning to Dance in the Rain

Tuesday we went to Primary Children's to have an ultrasound because our doctor thought there might be a problem with our little Zoey's heart. The ultrasound lasted an hour and the doctor didn't say much to us while he was doing it. After he got done he said, "We will meet in the other room to discuss this." We were then taken into a room that was very "comfy," well more comfy than a hospital should be. There was a big fluffy couch and two stands on each side of the couch. Each stand had a box of Kleenex's. There were lamps that provided dim lighting, and there were many other comfy chairs in the room. Each of the chairs were faced towards the couch. As soon as we walked in we knew we were not going to get good news. The room was way too overdone to give someone good news! A lady came into the room and asked how we were doing. Adam laughed and said, "By the looks of this room I can tell I am not doing good!" The lady laughed and sat down in one of the chairs directed to us. Another lady came in right after her, and the doctor came in shortly as well.

The doctor explained to us that our little girl has what is called Hypoplastic Left Heart Syndrome or HLHS for short. This means that her left ventrical in her heart did not form. In order to understand what this means you first need to know how a normal heart works. First blue blood (blood that has been pumped through your body and doesn't have any more oxygen in it) is pumped into your heart into your right ventrical. The right ventrical pumps the blue blood into your lungs. Your lungs oxygenate your blood turning your blood into red blood. The red blood is pumped into your left ventrical and your left ventrical then pumps the blood throughout your body.

As you can imagine, your left ventrical is a very important part of your heart. Your left ventrical also determines your blood pressure. There is no cure for HLHS, and only a few years ago if someone was diagnosed with this they were sure to die shortly after birth. We have been blessed to live in a time where we have had great medical advancements. Zoey will have to have 3 surgeries on her heart. Although these surgeries will not cure her, they may allow her to have more time here on earth.

I will be induced and deliver at the University of Utah Hospital. Right after birth Zoey will be taken to Primary Children's Medical Center where they will stabilize her. After she is stabilized (this can take up to 5 days) she will have her first surgery. This surgery is called the Norwood. After surgery, Zoey will stay in Primary Children's for 6-8 weeks.Her second surgery will take place when she is 4-6 months old. The third surgery will be when she is 2-3 years old. By the time the 3rd surgery is performed her right ventrical will no longer pump blue blood to the lungs, but will pump red blood to her entire body. As the blood returns to her heart it will pass through her lungs oxgenating the blood before returning to the heart. The reason why this is not a cure is because her right ventrical is made to pump blood to the lungs and is not as strong as the left ventrical which is made to pump blood throughout the body. This being said, the right ventrical will eventually give out.

Zoey is a fighter though. She hates ultrasounds and every time we have one (we have had 4 so far and have many more coming) she kicks the ultrasound machine and tries to hide. Every ultrasound technician has complained about this. Adam and I find it cute, but apparently if you are trying to get the pictures of her you don't find this cute. :)

I have thought a lot this week about a sign that was given to me a few months ago that says, "Life is not about waiting for the storm to pass, it is about learning to dance in the rain." We are going to dance in the rain and treasure every moment! Looking back over the past few years and months, it amazes me how Heavenly Father has set us up and prepared us to take on this challenge. Although I don't know why it has to happen, I can see that it fits into his plan. Just one example of how he has helped us get ready for this is with insurance. Adam and I have insurance through IHC, however, back in September we felt very strong that I needed to go back and work at 1-800-CONTACTS so that I can get insurance through them. Right now, we are double insured. This is a wonderful blessing. By the time Zoey comes I will be working from home at a 24 hour call center. This means I can choose my schedule to best meet the needs of our family 24 hours a day, 7 days a week. How grateful I am for the gospel of Jesus Christ and the tender mercies I can already see God has blessed us with. If any of you are wondering if there is anything you can do, please just remember to keep Zoey in your prayers. We are truley grateful for all the love and support from our friends and family.
For more information on HLHS go to http://hlhsinfo.homestead.com/
If you have any questions, please ask me. I am definatley not an expert, but I am learning! :)

23 comments:

shelese said...

I like that quote a lot! I was talking to Heather, and she said Zoey will probably be on the floor of the hospital that she works on. She was saying that Primary Children's does a lot of these procedures and are the best in the nation. I will definately be praying for you! Love you!

spideybrian said...

You don't know me, but I read about you on Shelese's blog. My niece just had open heart surgery yesterday. She will be 2 in April. She had 2 holes in her heart and it's size is 25% bigger than it should be, so her body is in constant overdrive. The surgery was a success, the holes are closed, but she'll still have problems with her heart being too big.

Anyhow, I'm just letting you know that modern medicine is miraculous, and so is prayer. I will pray for your little girl. I know He listens.

Angelina said...

Hey Rachel! Its Angie, I sit right across from you if you forgot. I'm glad your taking this well and looking at all the positive. You are in my prayers.

Dalling Family said...

Hey Rach. Can I tell you how amazing you are! You have been through so much and yet your faith hasn't faltered. I wish you and your family the best of luck- you are always in our prayers. I can't wait to meet lil Zoey!

Mike and Jenn said...

You and Adam are truly an inspiration to me...I can not imagine how your heart must be hurting, but yet you have made the choice to dance! You guys are incredible. Please keep us posted! We will definetly be praying for you and your Zoey!

Page said...
This comment has been removed by the author.
Jena said...

You are amazing people. Always remember that. You have full support from McKay and I, whatever you need, please, let us know.

Jena said...

Oh, and by the way, I love the name, Nahvi's middle name is Zoie, we loved the meaning behind the name, LIFE!

Moffitt Fam said...

Adam & Rachel, thanks for the comments you posted on our blog. We wish you the best with Zoey. Be sure to ask for Dr. Kaza to perform the surgery. He is the best! They told us Tyler would be in the hospital 5-6 weeks, but he will be released less than 3 weeks after he was born. Babies are resilient. Make sure you do a tour of the PICU at Primary's to help prepare yourselves for post-surgery. As you could see from our pictures of Tyler, it can be quite overwhelming. Feel free to contact us if you have any questions.

Mike and Rebecca said...

I remember when my wife and I went through the same routine, being prediagnosed, although I guess times have changed they took us to a small room - like a broom closet with no windows to drop the news on us. I'm glad your experience was a little more inviting and comfortable. Our daughter has gone through 3 open heart surgeries for another heart defect and will be turning 5 in Sept. She is doing great! I can't believe how time flies. If you ever need anything through this journey just let us know. These special spirits are amazing ! I just noticed that we're only 5 mins. away from you here in Riverton.

Hugs,
Mike Patton
Intermountain Healing Hearts-VP

Andrea said...

We wanted you to know you are in our hearts and prayers. You feel like a little sister to us, growing up so close to Shelese. We love you both!

MARK & CHRISTY said...

Hey Rach.. I am glad to hear you are in such great spirits! That is the best way to be! I just gave a talk on faith and trials in church yesterday.. and your attitudes is right where it should be! While I am sure that it is hard, I know you and Adam will keep the faith! Becky has a really good quote on her wall that says.. Faith is not only a feeling, it's a decision. Heavenly Father loves you guys and we do do! We will keep you guys in our prayers:)

Stacey said...

Rachel! Jena led me to your blog. Know that you are in our prayers. Medical and spiritual miracles are real. I know Zoey is coming to the best possible family and care she could have! If you need ANYTHING let me know!

Stacey said...

P.S. Zoey...how do you know the Moffitts? Jon is one of Tyson's best friend's older brothers! They grew up in the same hometown!

Holly said...

You are so strong! I loved the quote, and I pray everything goes well for your family.

The Fishers said...

Hey Rachel, this is one of your California cousins. I just heard about the news and sent you an email. I got two different email addresses from your brothers, so hopefully i picked the right one. If you get an email from some wierd looking email account, that's me. It looks like you've got a great attitude about everything and you have a good support base. You'll be on our thoughts and prayers. Love Lisa

The Christiansens said...

Hey Rachel! We are sorry to hear about that but just wanted to let you know that you are in our prayers! You both are wonderful people and I'm sure will be blessed!! We love you!

Josh and Jess

jeff said...

Uncle Jeff says nobody has a guarantee in life-but you got your notice early. You have a good attitude. If it fails for a while-that's ok. I often have to give up for a hour, or a day until I can pick up my load but I do keep picking it up. You can,too. Love.

Gibsons said...

Hi Adam & Rachel! You are such a source of amazement to me! I have and will continue to learn a lot from your example! You have an amazing family! Stacey Gibson

Nicole said...

Rachel, I love the little poem on the side of your blog. I think your daughter is such a special spirit that this is what has happened. What a blessing to have her coming to your family. You and your husband are in our thoughts and prayers.

John said...

We would like to nominate you for a FreedomToBlog.com Best of Blog Entry.

Please visit our site at: http://www.freedomtoblog.com to submit your blog entry!

Benefits include:
1) Permanent Backlinks to your blog
2) Fully SEO optimized for maximum exposure
3) A chance to be published into a top 500 best of blog book"

Tiffanie said...

I found your blog:) I love the poem on the side. I tried to do some "studying" on that heart site too, so I can understand the problem a bit more---you will both become experts I am sure and teach us all!I don't think Heavenly Father could have found better parents for Zoey to come to---you both are so strong(even if you don't think all of you. I had this link sent to me a few months ago and don't know of you have seen it. It will make anyone cry, but it also made me realize that I need to treasure each day with my children especially.I was touched by these parents attitude in their trial. Go to Utube and search "99 balloons".

The Cranes said...

Rachel and Adam, I'm not sure I can add much more comfort and inspiration to all these amazing comments...but I truly admire your faith and strength. And look at all these people who you inspire through your resilance! I will remember Zoey in my prayers, especially now as you make your journey to the hospital to deliver your small miracle. Prayers and thoughts go out to you and your family. Love you both, Brittney.