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Some random family pictures

Posted by on Monday, 23 January, 2012

Here are some random pictures from Christmas and New Years.

My mom, Terry is holding the baby on the day before New Years eve….she was here for around a month to help us during the surgery and recover time….Thanks MOM.

Jared and Jordan came over and visited with us on New Years eve…there is a picture of Mom and Jared, not sure why/how Jordan did not get in any of our photos!

The girls had some friends over to hang out with. Best buds, just chillin and being crazy too. Also a picture of our crew eat breakfast and playing Hedbanz, a fun game.

There is also a sweet picture of Heidie holding peanut (taken Jan 12th).

Hope you enjoy.

Update 01/23/2012, Elizabeth is doing great!

Posted by on Monday, 23 January, 2012

Great news everyone. Elizabeth is doing great.  It has now been over a month since her surgery and we’re happy to report that she is feeling wonderful. After the surgery she was in the hospital for 7 days, and then was home for Christmas.

She did end up needing to go back to the hospital for 3 more days—we were going in for a normal check-up and they found she had too much fluid still around her heart. That is something they check for because it often happens after that type of surgery. They put her on some medication to fix that fluid problem and she was able to come home 3 days later.

As she was on some strong medicine, she wasn’t feeling very good for a couple of weeks. But she was starting to get back to her happy normal self.  As the week went by she continued to recover well. We are now at the point where they are trying to get her off all medications. As we started lowering the intensity of the medications, her happy content ways were quickly coming back.  She was smiling more and more, and is happy during wake time.

She is now sleeping again through the night and eating great.  She has no fluid at all around the heart  now. I have some great pictures of Elizabeth that show you that she is almost back to her normal self.

I was talking to a friend (a fiery preacher from Scotland) who reminded me how many people have been and still are supporting Elizabeth and our family through prayers. Really from all over the world we had people on our side, praying for healing for our girl.  It was a great reminder for me that God’s love never fails, and that we are never alone. Thank you for being part of that!

With out further waiting, here are some pictures that I am sure you will love.

Jared and Jordan were both visiting on New Years Eve and that is a picture of Jared holding Elizabeth. The picture of Elizabeth with the big smile was taken Jan 13th.

 

Update 12/21/2011, Elizabeth is home from the hospital

Posted by on Wednesday, 21 December, 2011

Elizabeth arrived home from Phoenix Children’s Hospital on Dec 20th…which is exactly 5 months from when she was born.

Her surgery was successful and the recovery was amazing. While we had heard recovery time in the hospital would take 2-3 weeks, she was home only 1 week after her open heart surgery.

We are all so thrilled that she is home. God is so good—the last night of her hospital stay, a new nurse was on duty. This nurse has a young son who has Down Syndrome and she shared her experiences about her son and their struggles and victories….this was very helpful for us and also gave us some insight into raising Elizabeth. This nurse is a Christian and actually lives close to us and we have some of the same case workers and therapists. Heidie was able to get her contact information, and will be able to stay in touch with her. God does know exactly what we need.

What a wonderful gift that our peanut will be home and the family can be together this Christmas. Thank you all sooooo much for your prayers and support for us—I really can’t express enough my gratitude for standing with us during her surgery and hospital recovery.

Blessings,

Lockley & Heidie
Rebecca, Rose, Kaitlyn & Elizabeth

Update 12/14/2011, Elizabeth’s Heart Surgery is complete

Posted by on Wednesday, 14 December, 2011

Thank You to everyone who has been praying and supporting Elizabeth and our family during the open heart surgery. Thank You God for Your loving kindness and faithfulness to Elizabeth and our family.

Please continue to pray for a speedy recovery, we would love to have Elizabeth home in time for Christmas.

Day 1 – Surgery

The open heart surgery went well. It took about 3.5 hours for the surgery and she was in her recovery room around 2pm. Just before they took her to the surgery room, I took a little video of Elizabeth laying on the hospital bed. That video is shown here:

As the surgery went on, the nurses would come out and give us updates. Each time they would come out, they would say it is going as expected. The first time they came out, it was a super anxious time, as you can imagine. But it was always good news. The day had started off rainy and it did rain for most of the day. We were on the fourth floor of the hospital and sometime in the morning, it cleared some and there was some sunshine—-I looked out the window and saw a rainbow….it made me think of God’s promises and faithfulness, I that in itself was extremely comforting to me.

After surgery was complete we spoke to the surgeon and he was very calm and clinical, saying it went great, and he was very pleased with it. About 2 hours after that, we were able to go into the recovery room and see Elizabeth. As you can imagine, there were tubes everywhere and she looked very drugged up—which she was.

Day 2 – Recovery

Recovery is going well too. On Wednesday morning they were able to remove a breathing tube they had down her nose/throat…she seemed much more relaxed after getting that out. At around 1pm I was able to feed her a bottle of pedialite, her first meal through a bottle since the surgery. That was pretty sweet, she was eager to drink and glupped it down pretty quick.

At about 4pm, Heidie got to hold her and feed her some formula. She was very sweet and peaceful during her feeding. Initially, the doctors said we would not be able to hold her until day three, so she is ahead of schedule. Our other girls have been able to see Elizabeth (both Tuesday and Wednesday), they have missed a couple days of school so far in their support of their sister.

Day 3 – Recovery

Today Heidie was doing most of the nursing, as today’s nurse was not as effective as others we have had 🙁

Heidie is now able to to hold her and feed her (bottle). They have take most of the tubes and wires out of her. They are working on getting her lungs to clear up. She has treatments every 4 hours to break up the yucky stuff in her lungs. The treatment helps her cough and work out that stuff so it gets out.

Day 4 – Recovery

Today has been a tough day. She has an infection and is running a fever now. They have had to put back some of the tubes that were taken out. She has an IV again. We had started to feed her some formula in a bottle and Heidie has now been able to hold her. Now, though she is back on IV and not getting fed formula.

It is likely that the infection is making it difficult for her to breath, so she was hooked up again to the larger oxygen tank.

Current Prayer Needs

Please pray for the following:

  • her infection to be gone
  • her lungs to be cleared
  • her pain to be reduced

 

 


I will write more details to this same blog post as we go through this. I purposefully haven’t included many pictures just yet, because most don’t flatter my little girl. Please be patient, because soon enough she will be ooohhing and ahhhhhhinng everyone again with her stellar sweetness.

Blessings,

Lockley & Heidie
Rebecca, Rose, Kaitlyn, and Elizabeth

the missing toe – by Kaitlyn

Posted by on Thursday, 8 December, 2011

Hello everyone. Tuesday was an exciting day at our house. We had an accident in the kitchen that has us scurrying around. Especially Kaitlyn and Heidie.

We have this large (and heavy) wooden cutting board, and soup was being made in the kitchen. Kaitlyn was helping mom to cut up some vegetables for the soup. As Heidie and Kaitlyn were working together in the kitchen that cutting board fell and hit directly on Kaitlyn’s toe (right foot, second toe).  It was extremely painful so Kaitlyn was screaming and crying.

Heidie took her to emergency, where they gave her 2 shots with the biggest needle in the universe—that may have been the maximum pain level felt from this whole ordeal. Well the doctor called it a partial amputation, so they put it back together as best as they could. 10 stitches later and minus her toe-nail, they made their way home. Kaitlyn is on crutches for a while and the toe-nail will take about 6 months to grow back.  It is doubtful that she will be playing soccer this season, and we will need to find her some shoes that can protect that toe.

 

Here are a couple of pictures below. One is of the toe and the other is Kaitlyn playing with a blown up glove—waiting in the hospital always seems like it takes too long, so she is passing the time—Opa (Heidie’s father, David Wright) had blown the glove up and Kaitlyn provided the decoration.

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 11/15/2011, Elizabeth – Beware the fist!

Posted by on Tuesday, 15 November, 2011

Well, it has been a while since the last post of Elizabeth and we wanted to send you some recent news and pictures of how she is doing. (Click on a picture above to see it full sized).

We are greatly encouraged by the doctors visit. We have noticed that our girl is much more active lately. She is moving her arms and legs constantly, trying to fly off somewhere it looks like to us.  She also does this thing with her hand (her left hand mostly), where she will put it straight out and make a fist….then she will wave it around, hoping for someone to get into range.

You can see in the first picture above that she is letting Kaitlyn have a taste of her fury (although I think Elizabeth may be smiling there). The second picture, I love, she is focusing on her mighty fist—even giving the stinky eye for a great mean look. (I imagine her saying: You want a piece of me, punk?). She has had a number of fights with herself, as you can see from some of the pictures where she has scratched her head and face. That last picture she is hanging out with me in the office, some of her recent battle scars have healed up a bit.

The last doctors visit was Nov 14 and Heidie has posted this information about the doctor visit:

Dr. Puntel (heart Doc.) was “astounded” at Elizabeth progress… last night she rolled over on her tummy 2 times all by herself, she is eating 5 to 5.5 oz in under 20 min and babbling constantly… all those “signs” tell the Dr, that she is months ahead of a “typical infant with Down Syndrome”. He said “she is sooo strong!”

We looked at her heart and there is not 1 sign of heart failure. (With your prayers she has by passed all “normal” markers…we were to expect heart failure by now). So we continue forward with great encouragement… She will remain on the oxygen and Surgery needs to be done before she is 6 months old. (Jan 20, 2011) So it will most likely be done in January some time. We will meet with the surgeon next.

Thank you for all your love, prayers and faithfulness.. we will keep you posted.

PS: Here is a note from Elizabeth (sort of):

If you are going to shop online (especially for Christmas stuff), make sure you check out Dad’s store at http://faithgiftstore.com.  Dad’s store has lots of cool Christian Stuff, like Christian Books, Music, and all kinds of great Gift ideas.

I do understand that you would not always buy just from his store, but if you do buy anything from Amazon, then make sure you click this link first to go to Amazon:

http://www.amazon.com/?tag=lizziebear-20

that way you help me out (by helping out Dad).

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

 

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/