Ally Heintz » December 2005 Journal Entries » AboutMyBaby - online baby scrapbooks, photo albums, videos, birth and pregnancy announcements

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Sat, Dec 31, 2005 5:49 PM
Happy Birthday Daddy!!!

Ashley and I didn't get a chance to update yesterday so sorry it is a little belated. It was a busy day and plus Ashley wasn't feeling very well. Poor thing, she has very bad ear infections and I can tell she is feeling exhausted.

Anyhow, Daddy I wish you could've had a better birthday. I know you didn't get to do anything since Ashley was sick and I didn't have a nurse but we can hope for things to be better for your 2006 birthday.

Mommy said it is okay because she has a surprise present for you but it won't be here for a couple of weeks. I wonder what it is. If Ashley is feeling better today we will have a pseudo birthday party. Ashley will sing and I can eat all the cake!!! Plus we got you some presents and Ashley wants to give them to you.

Mommy , Ashley and I love you very much and we appreciate so much all that you do for us. This will be another difficult year but hopefully we will have everything resolved by December 31st 2006 and than you will have the best birthday ever.

All our love,
Ally, Ashley and Mommy

Before I forget, if you want to keep following my progress you need to send my mommy and daddy your email address and include in that how you know about me. Beginning January 5th you will need a password to access my website. The people that already emailed us should've received the password in an email my daddy sent out yesterday. So if you haven't please let mommy and daddy know. All emails should be sent to aajsheintz@yahoo.com

Thank you,
Love, Ally

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Mon, Dec 26, 2005 11:47 AM
We hope everyone had a joyous holiday weekend. We certainly had a few busy days ourselves. Nothing we are not used too. The girls had a great weekend. It was the best present we could have received, just to spend time home as a family! Of course the girls received way too many presents and toys. Ashley had a visit from the Grinch Saturday morning! He returned her DVD player that he stole while in Pittsburgh (be sure to see the photos of this in the new album).

Ally has been doing well. Mostly likely because she is not receiving any feeds as of now. Pittsburgh called the other day to let us know Ally's PELD score is now 28. They also want her to have a motility study done because they want to see if she really needs a stomach in transplant. I wish they could just make up their minds on organs and scoring!

Thats's all for now, we will update soon with any new information. Enjoy the new photos!

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Fri, Dec 23, 2005 7:21 AM
Yeah, we finally made it home!

Ally came home yesterday afternoon with a new central line and a new G-J tube. She had both of those placed Wednesday in the OR. They had no problems placing either one.

Last night the girls were busy playing and I think both of them were just really enjoying being at home again. We have plans to go for a Christmas tree later today.

Ally was officially listed for transplant on Wednesday. Her PELD score for the liver is a 40 which is sthe highest it can be. She received some exception points for the continuos line infections, previously having a transplant and for a needing a multi-visceral transplant. We are not really sure what the 40 points means though because we were still told to expect at least a 6 month wait but in theory the call could come at any time.

For now we are setting all the transplant stuff aside and are planning for a wonderful Christmas weekend.

Happy Holidays to everyone and we will update sometime next week.

Jill

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Sun, Dec 18, 2005 3:00 PM
Ally is back at duPont and resting from the long trip to Pittsburgh

The week was long for everyone, but we survived. In the begining of the week it looked as if they were not going to accept Ally for transplant. They thought with a good liver and bowel length maybe all she needed was some more time to feed. But as Friday approached, things started to change. By Thursday she made it on the list as a status 2. All that gives you is time on the transplant list, not much more. When Friday came, they did an upper GI and seen first hand what we had been telling them all week. I guess they needed the proof themselves. Ally's stomach was slow to empty, and when the contrast got to her bowel it just flew right on through. They took more blood to do testing for some other things, and still want us to have a motility test completed in the upcoming weeks.

The final results; Ally is now on the transplant list as a Status 1. She is listed as needing a multi-visceral. She will need a small bowel, liver, stomach, and pancreas. She will get all these ograns because it will give her the best opportunity at survival.

As for the next few weeks, we are still going to give the feeding issue one last try. Yesterday we tried placing an ND tube (nasal feeding tube) down Ally to start trying feeds again. This is somewhat of an issue, because with her stomach exposed, the tube tends to come out her abdominal region, not bypassing the hole in her stomach. Pittsburgh wants at least 4 weeks of feeding before they would accept any organs for her. The wait time for transplant is expected to be 8-12 months.

So many of you ask what it is you can pray for. I will tell you. Pray for the family of the young child who is healthy and enjoying life today, and at sometime next year will die of a sudden trauma or accident. Pray for the parents to make the life saving decision to donate their childs organs. Pray that Ally stays healthy enough to recieve those organs to not only live her life, but to share life with the young child you has passed. This is what we pray for. Just for a chance at life!

Enjoy all the new photos.

REMINDER: we will be placing password protection on Allys site starting Jan. 1st. Please know this is for good reason. If you want to continue to follow Ally, please send us your name, how you know Ally and an email address so we can send you the password. Forward your information to aajsheintz@yahoo.com. We will put this reminder on every update from here until the 1st.

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Fri, Dec 16, 2005 10:45 PM
We all made it back from Pittsburgh safe and sound. However Ally and I did have a delayed take off so we are a little exhausted. Just wanted to let everyone know that we made it back okay. We will give a full update with pictures sometime tomorrow or Sunday. Sorry for the delay we are just to tired to write.

Jill

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Thu, Dec 15, 2005 1:02 AM
I'm not even sure how to start this update...but by saying that it was extremely long day with not a very happy ending! Read on.

Tuesday morning was slow, we played with Ally and Ashley up until about 10:30 a.m. Then, Jill and I met with Bev from transplant to go over the small bowel procedure and everything that can be expected. The class was great! Not only did we learn much more about the bowel, but we had the experience to see photos of kids from the time they were transplanted up to 12 years later. For the first time, we felt as if we were not the only ones going through this. Seeing the end results of determined childeren survive such obstacles was amazing! It proved to us that Ally will do this, and be one of those stories of inspiration.

After the 2 hours of class we went back to Ally, had some lunch, then spoke with Deb a behavorial social worker. She was there to find out more about Ally and our family and to offer any services of help we may need during our stay. Then at about 5 p.m. 10 doctors entered the room to discuss a plan for Ally.

Plan is that they are not completely convienced that Ally needs a small bowel transplant. They feel that with a healthy liver (as of now), plenty of bowel length, that we just may have never had a real chance at feeding her and pushing her gut to the limit because of all our set backs. While this is somewhat true, we do know however that when Ally does feed, food passes through quickly. So when we told them about how she has not gained any weight this year, they then recommended us for a bowel motility study. The problem Jill and I think is that her gut while it has great length, it just doesn't move food through. We agreed for the motility test. However, the test can only be performed in Columbus, Ohio. So we are planning in a few weeks to maybe take a trip there.

As for any other things done to Ally today, nothing happened. Just alot of talking and planning. Tomorrow will not be such a good day tfor Ally. She will have an ND tube placed down her nose into her bowel, and an upper GI will be performed. This most likely will give them a better understanding of her motility issues.

So stay tuned. Sorry for being so brief but its late, I'm exhausted, and the rest of the story will explain more.

As for the rest of the night, it was not so good. We did however get a visit by a friend of a friend named Lynn. She was so nice. We decided to go out for dinner with her, and we found this small restaurant with great food and had a good time. That was until we walked out to our car. As I approached the car I noticed the rear window had a hole in it. Sure enough our car was broken into! Someone stole Ashley's portable DVD player off the back of the drivers seat. I tell you if this black cloud would ever leave us for a second it would be a miracle. That was all that was stolen. Of course Ashley was very upset, and did not understand why someone would do this. Of course we were just happy no one was hurt or involved. The cops came took report, and we drove back to the hotel with no window. Cold ride for everyone in the back :)

Ashley and the others just went to bed, and I may not have a chance in the morining to update. I will be busy calling the insurance company, finding someone to fix the window, buy Ahsley a DVD before we leave to come home, worry about Ally and all her tests, and on top of it we are expected to have a huge ice and snow storm tomorrow. Sounds like a great day, huh?

Stayed tuned. This trip is really testing the limits of our strength, and abilities to handle all this stress. Someone really likes to see just how much our family can handle at one time. Good night!!!

REMINDER: we will be placing password protection on Allys site starting Jan. 1st. Please know this is for good reason. If you want to continue to follow Ally, please send us your name, how you know Ally and an email address so we can send you the password. Forward your information to aajsheintz@yahoo.com. We will put this reminder on every update from here until the 1st.

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Tue, Dec 13, 2005 9:45 PM
Tuesday was an extremly long day. Ashley and our mothers spent most of the day at the PP&G building looking at the different holiday decorations and ginger bread houses. They had fun. Jill and I arrived early at the hospital, and spent the morning playing with Ally. It was a tough morining mentally. It took us back to the days of the NICU at Bryn Mawr. Reason was since its an open setting, you get to bear witness to everyone else's pain and suffering. Today an young boy just cried, and cried in pain. It's hard enough to deal with our own issues, but when you witness others, it makes the day that much harder. Ally didn't seem to mind the comotion. It's funny to see her in a new setting with all new people. She has adjusted amazingly well to her environment. Ally really does have an infectous smile!! In two short days, she won the hearts of the entire unit. People couldn't get over how happy she is. She just smiled that smile, and melted others hearts. It truly was a site to see!

The morning was long, and by noon, Ally had echocardigram done, an ultrasound of her liver, bowel, other abdominal organs, and we had the opportunity to re-live Ally's complete medical history by reciting it to her new GI doctor. It's always fun when you start back at; Ally was born at 33 weeks, Gastroschisis... you know how the
rest goes. No way am I going over it again today!
At 6 p.m. she was moved to the floor where she has her own private room. Hopefully tonight she will get some much needed sleep.

Tomorrow, Jill and I have a two hour class from 10 til noon to learn about small bowel transplant. Most of which we probably already read about. Sounds like fun. I really think by now we should have some degree earned with all this GI knoweledge, right? The rest of tomorrow we are not sure what is planned. We will update again later.

Thanks for all the emails wanting to continue to follow Ally. Look for the password closer to the 1st. Its going to take awhile to compile the mailing list. Our email was flooded with responses today. Its great too see you are all praying and keeping with us through this fight!Please don't panic if you miss the password, just contact us. There is a really good reason for this. Once the site is secure, we can let you know more.

REMINDER: we will be placing password protection on Allys site starting Jan. 1st. Please know this is for good reason. If you want to continue to follow Ally, please send us your name, how you know Ally and an email address so we can send you the password. Forward your information to aajsheintz@yahoo.com. We will put this reminder on every update from here until the 1st.

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Tue, Dec 13, 2005 8:30 AM
We finally have a chance this morning to update you on the trip so far to Pittsburgh.

Sunday morning, Ashley, our mothers, and myself left home at noon to make the trip by car. It was an uneventful trip until we got closer to Pittsburgh, and then we got hit by a blizzard!! On top of that we got lost temporaily in the city.
We finally made it to our hotel by 6p.m.

The hotel is nice. We want to thank everyone here who has sent or dropped off food and gifts for Ashley and ourselves. It has helped out greatly.

Monday morning, Ashley and the rest of us made a morning trip to the Kids museum of Pittsburgh. We spent about 3 hours there, playing and having a fun. Ashley really enjoyed herself!

Jill and Ally were delayed in their take off so they never made it to the hospital until about 1:30. Ally is currently in the IICU which is a n intermediate intensive care unit. However this is an open room setting so Ashley is not allowed to visit and Ally is not getting any rest. Hopefully today they will be moving her to a room on the floor.

As far as testing goes so far Ally has had only a couple of x-rays taken. We are headed to the hospital now and Ashley is staying with both of her grandmoms. We will update when we get a chance again.

As a final note; we will be placing password protection on Allys site starting Jan. 1st. Please know this is for good reason. If you want to continue to follow Ally, please send us your name, how you know Ally and an email address so we can send you the password. Forward your information to aajsheintz@yahoo.com. We will put this reminder on every update from here until the 1st.

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Sat, Dec 10, 2005 12:11 PM
Thankfully Ally has made a quick turn around since they pulled her central line. We will be heading to Pittsburgh on Monday. She is still on the vent more than she used to be but bascially back to her old settings.

We will update as soon as we are back from Pittsburgh or maybe while we are out there if we find some computers.

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Tue, Dec 6, 2005 12:38 PM
Ally has been keeping us busy with worry over the last few days. Over the weekend Ally started to get pretty sick. On Saturday her hemoglobin had dropped considerably so she had a blood transfusion and we had hoped that would make her feel better. Unfortunately she seemed worse on Sunday and was having more difficulty breathing. She remained on her vent all day and her settings were increased a little. By Sunday night she seemed happier and more playful, so we were hoping she was feeling better.

During the night Sunday Ally was not able to keep her oxygen sats up so they had to switch her to a critical care ventilator. She had a chest x-ray done that really doesn't look that great and looks even worse today. Also her abdomen was very distended so she had a CT scan. Thankfully that didn't show anything.

Ally is still on the critical ventilator but she seems to be acting more like herself today. She was out of the bed a played on her mat for a little while. She is napping now and having another blood transfusion because her hemoglobin dropped again. The docs are not sure why this keeps happening they think it is just because she is sick right now and her body can't make the red blood cells as fast as she is needing them.

As of now we aren't sure if Ally will get to Pittsburgh next week. She will need to be off the critical care vent and infection free. As of now she is still having positive blood cultures from her central line and from peripheral blood cultures. Later today they are going to pull her central line a place a temporary PICC line. Than hopefully get a new line at the end of the week. Probably by Friday we will know if we are going to Pittsburgh or not.

Please pray that Ally's infection clears and that she makes a speedy recovery so that we can travel to Pittsburgh for this evaluation.

I will update towards the end of the week unless something changes.
Jill

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Thu, Dec 1, 2005 6:00 PM
Well, we are still at duPont. Ally will be staying here until we go to Pittsburgh which won't be until December 12th. The team out there said that it would be better if Ally waited until her line infection clears. They said that the evaluation process is very intense and it would really wipe her out if she also had to battle an infection.

So now she will fly air ambulance to Pittsburgh and than at the end of that week she will be flown back to duPont. Hopefully she will be able to be discharged shortly after coming back to duPont. More than likely she won't be home before December 19th.

Ally's G-J tube is still out and they are not going to place a new one until we come back from Pittsburgh. They think she more than likely got this last line infection because they had to manipulate her bowel too much when they tried to put the G-J tube back in and she translocated some of the bacteria into her blood. They are afraid that if they try again she will get another infection and will have to miss her appointment in Pittsburgh. For now she is just getting TPN and receives her meds through a
G-tube.

They have weaned her oxygen and her vent settings, hopefully next week she will be back to her baseline of just CPAP and minimal oxygen. She has still been very happy. We brought in some toys from home so she has been busy playing her piano alot.

Ashley went to see Santa Claus the other night and she actually loved it! He even sent something back for Ally. Now the girls have a countdown calendar in Ally's room and tomorrow Ashley and I are going to decorate Ally's room with some Christmas lights.

Have a nice weekend and we'll update next week.
Jill

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