Posts Tagged heart

Update 9/13/2011, Elizabeth – Just Talkin

Posted by on Tuesday, 13 September, 2011

Crinkles

Hi all,

Elizabeth is doing well. Now tipping the scales at 8 pounds and 3 ounces. She had another visit at the heart doctors yesterday (9/12/2011) and everything is looking good and the doctor is very happy with her progress. Heart surgery is still looking to be sometime between Nov – Jan, but it is too early now to set a date.

She is still needing oxygen, but at the very lowest flow setting and only when she is sleeping. She set another record a couple days ago…she had 5 1/2 ounces in one feeding, she normally has between 3 and 4. You might be able to tell in the picture that she is starting to show those extra ounces.

She is getting more and more active. I have included a short youtube video of her talking a bit.

Hope you enjoy.

-Lockley

 

Elizabeth Abigail Gentes

Posted by on Thursday, 28 July, 2011

Friends and Family,

I wanted to let everyone know about the birth of our 4th daughter, Elizabeth Abigail Gentes. Born July 20, 2011 at 5lbs 14oz and 17″.  She was born with some serious health issues and is still in the hospital today (July 27 2011).

Heidie is doing well, after a super fast delivery, as our little bundle did come in a hurry. Heidie was released from the hospital after 2 days, and has recovered wonderfully.

Not long after the baby was born the doctors informed us that she likely has downs syndrome. That initial shocking news was confirmed through the chromosome test that were done. As part of the routine testing that gets done for kids with downs, doctors check the heart. Many kids with downs also have heart problems and unfortunately, Elizabeth has a serious heart problem where her heart has not fully developed. The main wall that separates the left and right side of the heart is not developed properly and the valves linking the top chambers to the bottom chambers are also not developed properly.

We met with a heart specialist doctor yesterday from Phoenix Children’s Hospital—that visit provided us with some general guidelines of what to expect with Elizabeth’s condition. This defect in her heart will require surgery to fix. This surgery would likely be done sometime around 4-6 months of age. We want Elizabeth to grow steadily and become stronger so she will be able to handle the surgery well.

Elizabeth with is now a week old and we know this about her now: She is a good eater. She is, of course, the cutest little girl who loves to look around and smile. She did start off having an IV as well as a feeding tube (down her throat). Well, she quickly was taken off of that after tests showed her digestive system is working fine. Once we were able to feed her milk, she showed us that she likes to eat.  As each of the first days went by she would eat more and more each time.

One thing that she has had a hard time with is her oxygen level. It sometimes dips a little below levels that doctors would like. As such she has been on and off tubes for giving her extra oxygen and air flow.

Elizabeth has been in the intensive care unit for her first week. However, tonight she was released from the hospital and at 10:55pm she arrived home. She will be on oxygen for a couple weeks (maybe up to a month) while her breathing stabilizes and she is able to have the proper oxygen level and air flow.

We would really appreciate your prayers in the following areas:

  • continue to eat well, gain weight and strength
  • breathing to stabilize and not have too shallow of breathing when she is sleeping
  • her heart is healed
  • wisdom to raise her in a home where she will thrive developmentally and physically

 

If you are on Facebook, you likely have seen our pictures of Elizabeth, of course she is cute as a button.  I will be posting more pictures there. Here is a link to the Facebook album (you need a Facebook account to see the pictures):

http://www.facebook.com/media/set/?set=a.10150247783828580.331058.724988579

Thank you for all your prayers and support of Elizabeth and our family.

Feel free to email me—however, please don’t expect an immediate reply to your questions. I will try to continue to send timely updates about Elizabeth, but I would most certainly ask for your patience as our family begins this most unique and wonderful new journey.

Blessings,

Lockley & Heidie Gentes

 

UPDATE (7/29/2011): for those who don’t have facebook, you can look at the pictures here:

http://www.flickr.com/photos/lockley_gentes/sets/72157627184349321/