Wednesday, April 30, 2008
Back to the Beginning
As you have noticed, I am beginning to write and tell Burke's story. But, I am going back in time, to when Burke was born. Back to the beginning, where Burke's road and journey in life started. But I cannot physically or emotionally write his experience, our experience, all in one post. So, I will attempt to do this over the course of awhile, until I can arrive at the present. He is 8 months old already, so this could take me awhile. Thanks for reading!
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13 comments:
So excited to see new posts!!!! Keep them coming!!!!
I found your blog through a friend's blog and felt compelled to comment. I hope you don't mind. My 4 year old son, Brody, is a regular at Primary's. If there is anything I can help you with through your journey, please let me know. We, too, will be there May 22 for surgery and a week in the PICU for recovery. Feel free to reach out if you have questions or concerns. Also, I have links on my page to friend of ours who are parents of "heart babies." Perhaps it will help. Best wishes!
--Amie Harwood
I am sooooo excited that you guys finally have a blog. I can't believe how big your kids are already. Emma is gorgeous and Burke is so handsome. What a beautiful family!!
Hey Rach! I can't believe all that your family has gone through these past few months! I wish I had known! We have a spare room and we're close to Salt Lake, so anytime you have to come to Primary's, you know where to stay. I can keep Emma for you too. Ash would love to play with her again! Come and see me when you come down in a couple of weeks!
Miss you!
Hi I am Annamarie. No I don't mind at all. I am always lookng for people who are going through the same things, someone to relate to. Anyway. My son is down syndrome....don't know if you noticed. He is actually a identical twin. And his brother died from heart failure at 17 weeks gestation. Down syndrome babies are commonally born with heart problems. Well when luke was born they he had some of the common holes that they weren't worried about and said they would probably close on there own, and upon lwaving the NICU they heard no murmurs. so it kind of ended there. Well to make long story short Through a few hospital stays for pnuemonia they suddenly heard a heart murmur, which then lead to echo. and the conclusion was a VSD which has been there since birth! It was a late fix. My son is 18 months and they are normally fixed at 10 months. So he has sufered from Pulmonary Hypertension. So He has oxygen hopefully only a couple of more weeks. Sorry that was LOng winded! lol. anyway. I would love to keep in touch. Let me know if I can do anything! and GOOD LUCK.
Rachel, I was so glad to run into you at the store yesterday and see your sweet little Burke. He is such a special guy and you can feel of his tender spirit just being around him. We wish you the best of luck and will keep you in our prayers.
I sooo glad you found me. Your kids are sooo cute. I'm sorry to hear what you have gone through. Burke looks great in the pics. Well this is a great way to keep in touch and if you are ever in Southern California, Call me.
How great you've started a blog. Burke has been in my prayers, by the way. He has been a fighter from day one.
Can I put you on my link list? Feel free to put us on yours as well.
Burke is adorable!! We have a little guy who had an AV canal heart defect, an ASD, and pulmonary stenosis. It was all fixed at 4 months old, but he has had problems with pulmonary hypertension.
We have spent our fair share up at Primary's, and will be having more surgeries this summer. The next one is on the 16th of June. (He just got over RSV, so we had to wait 6 weeks for the surgery.)
It's crazy being up there so much. He is two now, and he has Down Syndrome, but he is such a sweet heart. We wouldn't trade him for anything.
I don't know if you know or not, but there is a support group for families of children w/ heart defects that are treated at PCMC.
It's called Intermountain Healing Hearts. If you google it, you can get the link. There's a yahoo chat group, and we get together every now and again as well.
Let me know if you need help getting some more links.
You have beautiful kids.
Pam and Rhett
http://rhettsjourney.blogspot.com/
RACHEL!!!
I just wanted to wish you a HAPPY BIRTHDAY! I saw your blog on kristas page and didn't know how else to get a hold of you! I hope you had a great day!! Your family is so cute!! Have a good one!!
Miss you,
AShley Ross (Schmidt)
Happy birthday yesterday!!! sorry about the deleted post thing on here, i was trying to erase something and blah, blah, blah, and well, as you can see i am still trying to figure things out.
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