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Wednesday, March 23, 2011

Not what we expected

In February we found out that we are having another boy! We are very excited to even up our numbers. At the ultrasound they thought something might be wrong with his heart, so they scheduled us to get a fetal echocardiogram at Primary Children's hospital, we had that visit the first week in March. We found out there, that our baby has hypoplastic left heart syndrome, or HLHS, which basically means that the left side of his heart is underdeveloped, so it's kind of like he has a half of a heart. They can do a series of 3 operations to make it so the right side of the heart takes care of the left side's duties. The first operation will be 3-5 days after he is born, and the second is at 4-6 months, and the third is around 3 years old. They told us that he has a 60% chance of survival to age 5.
Obviously this news came as a bit of a shock, we are feeling overwhelmed of course, but we are hopeful for the best possible outcome. We also have felt so much love and support from our families, that we know we won't have to go through this alone, which is a huge blessing. We are just planning on taking things one day at a time, and putting our faith in God that whatever happens will be the best for our family.
If you know of anyone that has had a baby with HLHS, please let me know, I would love to talk to some other people that have gone through this.
This blog will probably turn into more of an update on the baby's status, so that I won't have to tell a million people the same thing over and over. We appreciate everyone's concern and prayers for our family, I never thought that I would have a trial like this in my life. Feel free to check back, we have another appointment the 8th of April for another fetal echocardiogram at Primary Children's.

11 comments:

Lindsey said...

I'm know this is a difficult time. Your family will definitely be in our thoughts and prayers for sure.

Jacqui said...

Thinking of you. I need to just call you! I have a lot to say. Maybe I'll write an email...

Shennie said...

I'll keep all of you in our prayers.

Shu said...

Sorry to hear about your baby boy. My thoughts and prayers will be with you throughout this experience.

Staceroo said...

You and Carl are amazing, and you have amazing families. Know that our love and support are going out to you guys right now. We'll keep you in our prayers.

Tammylulu said...

Again...if you need anything during this time ahead. Rusty and I sure enjoyed spending time with ya'll in St. George and getting to know you better.

TomKat said...

We fasted and prayed for you yesterday, and continue to pray for you guys daily! Sorry we missed you guys on Saturday...that would have been so fun to see you. Love you guys!

Dana said...

We are thinking about and praying for your family alot.

Anonymous said...

Oh Lisa. That's what our son had. Praying for you. We're still in the valley. Please let me know if there is anything we can do.

Catie said...

Oh you guys I am so sorry. I know what that is like. Ben only had to have one surgery though. The people at Primary are awesome! We stayed at the Ronald McDonald house and I recommend that; it's cheap and they feed you for free. Also, Josh and I will be moving to Salt Lake area this summer and we are happy to have you stay with us/watch kids, whatever we can do to help. Please let us know.

Christina said...

I happened on your blog and wanted to let you know about a local family support organization for congenital heart defects called Intermountain Healing Hearts www.ihhearts.org

There are lots of other HLHS families that you can connect with. I am a mom to a 4 year old son who was born with Transposition of the Great Arteries and had open heart surgery at Primary Children's.

IHH has an upcoming Heart Mom Luncheon (see details on website) and other ongoing family activities. Also there is a forum to interact with other heart families (link is on the top right corner of the website).

Please let me know if there is anything I can help you with!

Hugs & Prayers,
Christina
Heart Momma to Jacob (TGA)
www.jacobsheart.blogspot.com
Christina@ihhearts.org