The heart world is big and small. I found out after Hope was born that there is a whole community of families that have been through what we were starting. It was a relief and also a very sad lesson to be learned. I have witnessed much heartache and have celebrated so much in this past year. I have met families that will remain friends forever because we share a bond in our children. I have 'met' families and older children/adults that were born with CHDs online that I may never meet in person (although I really, really want to). Before Hope was born, I lived like so many others...in a world where CHDs were basically unknown or relatively easy to fix. I have learned more in this year than I did in my 40 years years of living. I thank those that have come before me...especially the parents that went through this journey when there was no Internet and probably very little support.
Now, there are a few families that are starting this journey and need your prayers. Ewan was born on September 18th with Tetralogy of Fallot. He has been through so much in such a few short days and is now on ECMO. Please send up prayers for this little guy. He is doing much better, but could always use the prayers and his parents have some specific prayers on their blog. Joshua could also use your prayers today. He is getting ready to head back to the OR for another surgery...this time to either modify or slow his shunt. His parents are wonderful and have been through so much with Joshua since he was born. He has HLHS just like Hope and we all know how hard these months are after the Norwood. Please send up extra prayers for him today. And a good one...please help Olivia's family celebrate her 6 month birthday. Olivia has HLHS and I remember the 6 month birthday...what a wonderful feeling and celebration. Olivia has already had her Norwood and Glenn...all before her 6 month birthday...AMAZING. Finally, a little closer to home. Logan was born with Heterotaxy (single ventricle, but a lot more) and he and his family actually live pretty close to us...we will meet in person someday soon. Logan will be heading to CHOP (Children's Hospital of Philadelphia) pretty soon with his family to have the Glenn and fix some other stuff (see...I don't know a whole lot about this heart stuff). He has been doing really good at home and getting lots of love from his family and now they are all facing being away from home and Logan having his first open heart surgery. Please keep them in your thoughts and prayers as they start on yet another journey.
Monday, September 27, 2010
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Keeping all them in our prayers. I am thankful for the community we have, it would be a hard journey without it! I admire the 1st generation HLHS parents who had to do this on their own, without the blogs, the facebook groups, the instant friendship we are able to make.
ReplyDeleteJennifer & Colin
I will keep all of them in my thoughts and prayers. Thank you for sharing their stories and for trying to put CHD out ther for many people who have never even heard of it.
ReplyDeleteYou are so right Paula. I hadn't really given much thought to those first generation families without all the technology to find one another. How lonely they must have been. I know I have found great comfort in Hope's story and I hope that I can pass that comfort along through Olivia's to someone else in need for information those first days after diagnosis. Thank you for the sweet birthday wishes for our baby girl.
ReplyDeleteLisa & Brian