Posts Tagged Phoenix Children’s Hospital

Update 12/07/2011, Elizabeth — Heart Surgery is scheduled for Dec 13th

Posted by on Wednesday, 7 December, 2011

We have exciting news.  Elizabeth’s heart surgery is scheduled for Tuesday Dec 13th, 2011 @ 7:30am. This was a surprise to us that she is able to have the surgery this soon. We were thinking more along the lines of middle to late January.  She is doing very well and is well over 10 lbs now.  The surgery is sooner because Elizabeth has been doing so well, not because something is wrong.  The goal was to get her ready for surgery–and a 4-6 month time frame was given as the likely target time for her to have the surgery.  She has progressed well and is big enough and strong enough now for the surgery. The open heart surgery is to fix the wall between the sides of the heart, as it is not formed properly, as well as fixing the valves inside the heart.

We have had some flu going through the family for the last several weeks, but it does look like we are out of the woods. Elizabeth has had a few rough days, but has seemed to bounce back quickly from that. The biggest thing right now for the surgery is that she must be healthy and not get the flu or any other sickness—otherwise they can’t perform the heart surgery that she needs.

Our plan is for our family (all the girls included) to visit the Phoenix Children’s Hospital this Friday and tour the facilities and go over the procedure as well as get an understanding of the recovering process while in the hospital. We are expecting her to be in the hospital for 2-3 weeks after the surgery, and we are hoping she will be home for Christmas! As part of the Friday tour and talk with the Doctors, our girls have been thinking about this process and are writing down questions that they have and they will ask the Doctors and staff those questions.  Phoenix Children’s Hospital is known for it’s family environment and we are glad they will allow the girls to ask the Doctors their questions and get answers.

The Monday before surgery, we will go to the hospital for tests—to make sure Elizabeth is healthy enough for the heart surgery. If all goes as planned, then Tuesday morning we will go in early and prep for her 7:30am surgery time.

Can you please pray for us in these areas:

  • Elizabeth to remain healthy and strong and not to catch the flu or cold
  • for complete healing of Elizabeth’s heart
  • for Doctor’s and medical staff to be used by God and also changed by Him in this process
  • for a quick recovery time in the hospital and for Elizabeth to be back at home before Christmas
  • for our other daughters, Rebecca (age 12), Rose and Kaitlyn (age 9) to be able to handle this transition time of surgery along with the lengthy hospital recovery time

I wanted to include some updated pictures and video.

Short video featuring Heidie and Elizabeth, Kaitlyn is recording. Elizabeth is giggling and then waving to her fans, don’t miss it! (I noticed sometimes the video below looks blank, if so, reloading/refreshing this page seems to fix it)

 

Some recent pictures. Elizabeth is on the prowl / Rose and Lizzie sharing a moment / Elizabeth: deer in the headlights look (or maybe in her jug look)!

 

Please do share this page with others that you know that would join with us in prayer. You can share this page by clicking the links below to share on Facebook or Twitter.

Thank you so much for your support in prayer for Elizabeth and our whole family during this time.

Blessings,

Lockley & Heidie Gentes

 

Update 8/8/2011, Elizabeth Gentes

Posted by on Monday, 8 August, 2011

Family and Friends,


I wanted to send along an update of how things are going with Elizabeth. Thank you so much for your prayers and support over these last 2 weeks—we have certainly felt your love and caring.

Elizabeth is continuing to do well. She is eating and sleeping and she is steadily gaining weight. She is now up to 6 lbs 15.8 oz as of today (8/8/2011)—and they measured her at 19″ long.

Today was our first visit to the Phoenix Children’s Hospital where we visited with our Pediatric Cardiologist (Kids Heart Doctor), Dr. Puntel. This doctor had made a trip to the hospital (a couple weeks ago) where Elizabeth was born to meet us and Elizabeth—Today was our first visit with him on his turf.

During our visit today, the doc said we could remove some of the restrictions of the oxygen for Elizabeth. She will only need the oxygen now while she is sleeping, not during her awake time—which was great to hear. He said it may be another 3-4 weeks before she can come off it completely.

He also recommend we give her some more calories in her diet, so she can bulk up a little quicker—so we will work out the details of that when we visit our regular Pediatrician–this week likely.

They did another ultra-sound of the heart (echo cardiogram)—and the results were exactly what the doctor was expecting, so there is no change in her schedule for having surgery in 4-6 months. The doc did mention he would rather her have the surgery closer to the 6 months than the 4 if possible—meaning the bigger and stronger she is the better things will go with recovery.

At home, her sisters are starting to help more, with the girls feed her some and playing with her during wake time. Grandma Terry is here helping and she has been a tremendous help with everything. Auntie Kelly also came in for a few days and helped out by using her superior shopping skills to get all our back to school shopping done—and of course the girls all loved to go out and shop with their aunt.
We are getting adjusted to these new changes and challenges. It has been a few years since we had a newborn, but it is coming back slowly. Eat, sleep, change diaper, repeat. She is eating about every 4 hours and has been sleeping pretty good…we normally have to wake her for meal times, but she is slurping down about 4 ounces per meal—which is great for a new born.

I am putting up more pictures on facebook, google+ and flickr. Here are the links (if you don’t have facebook account or a google account, then you can look at the pics on flickr):


Facebook Pictures

Google+ Pictures


Flickr Pictures



The same areas of prayer would still be appreciated:
  • 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
Love and Hugs from Lockley, Heidie, Rebecca, Rose, Kaitlyn and Elizabeth

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/