I Know it is another post of our little Tyler, but,I have felt that I should post as much info about Tyler and what it is like to bring home a baby with this condition. He has been home almost a week and it has been a big adjustment. I am so glad to be home and to have him home. The first pic I have posted is to show you the color of Tyler's hands, they are almost always a blue-purple color. The second pic is of him crying, his whole body will turn dark purple (although you can't tell in this pic I just thought it was cute!), very typical for a hlhs baby. The last pic is him with his home medical equipment, a sat. monitor, oxygen and feeding pump and bags of supplies. Tyler keeps me very busy and worried all the time, but he also brings so much joy to my heart. It is funny because even though he has a lot going on with his health, he still just seems like a normal sweet baby! I know that there are people that have veiwed our blog looking for info on HLHS, so I hope this helps give you an idea of what it is like to bring home a baby with this condition.
I Know it is another post of our little Tyler, but,I have felt that I should post as much info about Tyler and what it is like to bring home a baby with this condition. He has been home almost a week and it has been a big adjustment. I am so glad to be home and to have him home. The first pic I have posted is to show you the color of Tyler's hands, they are almost always a blue-purple color. The second pic is of him crying, his whole body will turn dark purple (although you can't tell in this pic I just thought it was cute!), very typical for a hlhs baby. The last pic is him with his home medical equipment, a sat. monitor, oxygen and feeding pump and bags of supplies. Tyler keeps me very busy and worried all the time, but he also brings so much joy to my heart. It is funny because even though he has a lot going on with his health, he still just seems like a normal sweet baby! I know that there are people that have veiwed our blog looking for info on HLHS, so I hope this helps give you an idea of what it is like to bring home a baby with this condition.
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4 comments:
Our little Payton friend has always been the ash blue color... until recently.
http://hicksfamilyadventures.blogspot.com/2009/03/before-after-surgery.html
Hi Moffitt Family! I, too, have a little blueberry! I stumbled across your blog and thought I'd say hello. I always love getting in "touch" with other HLHS families. Your Tyler is such a beautiful baby, and seems to be doing so well! Mary Clare, my HLHSer was born in June of 2007, has had her Norwood and Glenn and is doing exceptionally well. (I know it helps to see HLHS babies that are growing and thriving!) Thanks for sharing his precious life!
Kerri Pennington
www.babypennington.com
Thanks for the post! Have they told you how long to expect to have Tyler on all that equipment?
He only rarely uses the feeding tube anymore. We're not sure how much longer he'll be on the oxygen. We wouldn't be surprised if he keeps it until after his 2nd surgery
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