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

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Mon, Jan 31, 2005 12:00 PM
Ally has finally come home. We brought her home Friday night. She had a good night Firday, and an even better day Saturday. Ally even had the chance to go to her cousin Taylor's birthday party Saturday. After all the excitement, we thought for sure Ally would be exhausted. But, just our luck, and with no nursing Saturday night, Ally thought it would be fun to continue her party, by staying up most of the night.

After finally getting Ally to sleep around 2AM . . .Sunday was here. Sunday was a big day for our family, and friends. It was the day of Ally's basket bingo fundraising event. The event was without a doubt, unbelievable!! About 350 people turned out to support our family and Ally.
It amazed both Jill and I to see the number of people who cared so much, and offered their support. None of this event would have been possible without all the work and effort of our friends & families. We can not thank you enough for the continued support. Thank You!!

As these events continue to raise money, and Ally's Recovery Fund grows, Jill and I still hope that the money will remain untouched until the day where Ally can help us as a family inspire & bring awareness to others of just how precious life really is.

To this day we feel blessed to still have Ally.
We get through each day because of a strong, growing number of friends in the community willing to help us. Without you, we as a family would not be able to get through all of this.

Thank You all again, for the support, and please continue to pray for Ally.

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Wed, Jan 26, 2005 11:30 PM
I am still busy hanging out in Delaware. I try to tell my mommy that it is like a vacation but I don't think she agrees. I'm not sure when they are gonna let me out of here.

On monday the GI doctors scoped me. They found one area of bleeding that they could do some banding on (basically that means they put a small rubber band around the bleeding vein.) Other than that they said that the rest of the bleeding was probably coming from the veins in my belly. By the way this bleeding vein problem will correct itself once I have a liver that functions normally. The doctors scoped me in my room instead of sending me to the OR, which was good because then I only had to have a little sedation.

Yesterday I was busy trying to scare my mommy and my nurse by having a lot of blood in my diaper.(My mommy doesn't scare too easily anymore, she is no fun!) Anyhow, I bled enough that I was pretty lethargic yesterday and then I dropped my hemoglobin to 7.6 so the doctors gave me some more blood last night. This morning the doctors weren't very happy with some of my clotting factor labs, so today I received platelets. I only had a little bleeding today.

The transplant doctors couldn't get me to status I but they were able to get my PELD score increased from 26 to 35. A score of 35 is pretty high so that basically is pretty close to being a status I. Mommy definitely needs to wear her beeper all the time now!

Last week there was a little girl in the PICU who got a new liver from her mommy. She was doing pretty well, they moved her out to the regular floor after only a few days. Everyone kept saying how good she was doing and how good her labs looked. Before long they will be saying the same stuff about me!

I know that my home nurses are probably checking out this site to see how I am doing, so I just wanted to say I miss you and can't wait to be back home, even if I only get to stay for a couple of days. Gotta go it is 11:45, another day almost over hope tomorrow is a good day!

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Sun, Jan 23, 2005 4:00 PM
Ally is still in the hospital, we are not exactly sure when she will be coming home. She received another blood transfusion on Friday night which we thought would help to stabilize her hemoglobin. However, Ally had some more bleeding Friday night and also some yesterday. This morning her hemoglobin dropped from 9.7 to 8.8. This is not extremely low but we thought the blood would help to keep her hemoglobin from dropping any further.

Tomorrow Ally is going to have some more scopes one from above and one from below. The doctors are not sure if she will be able to come home after the scopes are complete or she may have to stay to monitor her for further bleeding. We will update again when we have some more information.

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Thu, Jan 20, 2005 12:00 PM
Scratch everything I wrote this morning, about Ally being home. She is on her way back to duPont this afternoon, because she is still continuing to bleed. I guess will see what the docs in transplant have to say today.

Stay tuned . . .

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Thu, Jan 20, 2005 7:33 AM
Ally came home Tuesday evening. Sorry for not updating you all know sooner, but things at home have been busy. Currently we don't have night nursing help until Sunday, and that makes for many of long nights of exhaustion, more so for Jill than I (I need some sleep before going to work :)

Ally has been doing fine so far, and seems to be very happy to be home again, playing with her sister Ashley. Maybe this weekend we will stay home to avoid all the ugly weather. Our luck, we will get a call for a liver in the middle of a snow storm :)

Speaking of the liver, I have completed my blood work, and everything so far looks to be good. Last thing on my list to do is a CT scan of my liver. Most likely this will not happen until closer to surgery, if we go that route.

In the meantime, keep praying, and we will keep taking it one day at a time.

Shane

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Tue, Jan 18, 2005 11:45 AM
Hi everyone, I'm still in the PICU but I'm planning on breaking out of this joint today! I have not had any bleeding since Saturday. They kept me here yesterday just to make sure I didn't start bleeding again. We can't leave until this afternoon when Daddy comes to pick Mommy and me up. He had to go to work today.

Ashley is spending the day at Gram's she told me she had a lot of fun yesterday at Chucke Cheese. Mommy told me that Ashley was looking for me this morning in my crib. She is glad that I'm coming home again.

As far as my liver goes, the docs took me off of status I, which is probably good because I'm sure that there are some people who need a liver more than I do. My PELD score did increase so I am higher on the liver waiting list. Mommy says we will have to just be patient and stay healthy until our call comes.

Thank you all so much for all of your prayers. I'm hoping I can stay home until I need my transplant but,I do really like to visit all of my friends here in the PICU.
Take Care,
Love Ally

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Sun, Jan 16, 2005 10:17 PM
Shane and I just left Ally sound asleep in her crib in the PICU. She had her face covered with her baby blanket just like she does at home. Shane and I are spending another night at the Ronald McDonald House. Ashley got a chance to stay down with us last night. She couldn't stay tonight because her social calendar is full with a birthday party for her cousin, at Chucke Cheese.

Ally has had no further bleeding and the doctors restarted her feed yesterday around noon. As long as she has no bleeding through the night or tomorrow morning than we should be able to head home tomorrow afternoon. The transplant surgeon has moved Ally up to a Status I for a liver transplant however, she will only remain at this level for the time she is in the PICU. Once we are back at home she will be moved back to whatever her PELD score reflects.

Last night her surgeon received some calls for livers offered to Ally. However, two of them were from adults. The other one was from an infant but the surgeon felt that the baby was too sick and didn't feel comfortable accepting the liver for Ally because it could have put Ally in a more difficult situation. So, unless we receive a call tonight we will be home tomorrow.

Thank you to everyone offering your concern and prayers. We will try to update tomorrow night.

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Sat, Jan 15, 2005 11:23 AM
After a long week again, Ally came home from the hospital Tuesday night. Only to make a return trip to the clinic on Thursday for more evaluations because she was bleeding again. Ally did return home Thursday from clinic, and her new night time nurse Jeanne :), got to be with her.

Ally was fine most of the day Friday, but then Friday evening, she had another episode of large amounts of blood in her diaper. We packed up Ally last night at 6pm for duPont, and spent the next 8 hrs. in the emergency room. Finally this morning at 3:30 a.m., Ally got a room in the PICU. She is resting comfortably. Jill and I are exhausted. And to make matters worse, Jill had to work this morning.

Anyway, I guess we will see what today brings. We do know that things are getting worse, and fast. Ally's bilirubin has jumped up from 18.2 on Monday, to now 22.8. And the bleeding is getting to be more. We are hoping that maybe today the transplant team will reevaluate Ally and maybe come up with a higher PELD score, moving Ally up the liver transplant list. In the meantime, I am still having tests done to make sure that I can still be a living donor for Ally. I passed the physical, now all I need is the blood work, and CT scan of my liver.

Thank you all for your prayers and support.

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Mon, Jan 10, 2005 11:44 PM
Ally did not get to come home today because she was having some more bleeding. Maybe tomorrow. In the meantime we are getting all the paper work and testing done that she needs to be on the transplant list. Shane is also beginning the process of being tested so that we know if he is a potential living donor for Ally. I will try to update again tomorrow. Ally has still been busy smiling and playing and of course pulling out her NG tube!

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Sat, Jan 8, 2005 10:00 PM
We are sure that by now the news has started to spread, so we figured it is about time to update the site.
Ally had her ultrasound done early Friday morning and late afternoon Ally went to the OR to be scoped. Prior to Ally going to the OR a new doctor had stopped by to talk with us. Needless to say she was not visiting us with good news. She informed us that what she saw on the ultasound was pretty concerning and that she did not really need to see the results of the scope to know that Ally was in need of a new liver. As of Monday Ally will be placed on a waiting list for a liver transplant.

This has always been something Shane and I have feared, since Ally has had to be on her IV fluids for so long. We knew that the IV fluids were damaging her liver but at the same time they are what she needs to keep her alive. After talking to one of the transplant doctors, Dr. Casas, we have decided not look at this as a defeat but to look at this with a positive attitude.

Dr. Casas told us that she beleives that Ally's liver is in such bad shape that it is preventing her bowel from making any progress and is also probably making her more dependent on the ventilator. So, we feel that the liver transplant is exactly what Ally needs to help make everything start to function as they should. This is what is going to make her healthy!

Ally will hopefully get to come home from the PICU on Monday, as long as she has no more bleeding episodes. Once we are home she will be able to stay at home as long as her condition doesn't deteriorate and as long as she has no bleeding. Ally has AB blood type which is excellent because that makes her a universal recepient. Unlike other types of transplants, for a liver transplant only the blood type needs to be matched.

The doctors would prefer to have a whole liver donor for Ally, but if there is no time to wait they will take a living donor. Shane and I will start to have testing done to see if we can be potential living donors for Ally. A living donor gives part of the left lobe of their liver. The transplant doctors feel that Ally will be put fairly high on the transplant list because of her condition, plus the fact that she is on a ventilator. They said we could expect a liver as soon as one to two months from now.

We know that this is probably coming as a shock to many of you. Although Ally needing a transplant was always in the back of our minds, it was very difficult to hear that it is going to become a reality.

I know that many of you may like to read some more about the transplant process, so I will have Shane add some links to the websites. We will update soon with any further news.

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Fri, Jan 7, 2005 9:55 AM
The New Year is not off to such a good start. That's right, we are back at our old hangout, hotel duPont! We brought Ally to the ER yesterday when she started with another GI bleed. We have seen Dr. Katz, Ally's surgeon and have also talked to the GI docs. Currently she is going to have at least a weekend stay in the PICU.

Later today Ally is going into the OR to have a scope done to try to see where the bleeding is coming from. The doctors are concerned that the bleeding is due to enlarged blood vessels that bleed easily due to Ally's on going liver problems. Since we have been home Ally's billirubin levels have been slowly increasing and now her liver is presenting some other problems. There has still been no mention of putting Ally on a liver transplant list, thank God.

The scopes (one from above and one from below) will hopefully be able to tell us a lot. Depending on what they see they can sometimes repair where the bleeding is coming from but, it will only be a temporary fix to the problem. They also plan to do an ultrasound to get a look at Ally's liver and gall bladder. The gall bladder helps to excrete the billirubin and if it is blocked or backed up that would be causing some of these problems that she has been experiencing. She has also been a little anemic and with the bleeding it has pushed her over the edge. So,today she is going to get some blood which should help to perk her up a little more.

We will try to update later today when we have some news. Please, as always, keep Ally in your prayers. Jim if you are reading this Shane said he can't meet you for lunch!

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Mon, Jan 3, 2005 4:00 PM
Happy New Year everyone. I know this is a little belated but, so is this update! Ally has been keeping us too busy to write updates. I had Shane put pictures up to hold everyone over until I got a chance to write an update.

Christmas was great we had a fun morning of the girls opening gifts. Okay, Ashley opening all the gifts! Christmas eve we went to Shane's parents and that was Ally's first trip to her Gram and Pop's house. Christmas night Ally decided it was time for a little fun. When I went to change her diaper there was a significant amount of blood in it. We immediately turned her feed off and called her doctors. Ally in the meantime was very happy and was busy smiling and laughing. When I spoke to the doc they said to leave her feed for the night and if she has anymore bleeding we would need to take her to duPont.

Ally behaved during the night and in the morning the doctor called to check up on her. She said to start running pedialyte and see how she does with that. So, since Ally seemed to be feeling fine we packed her up to go to Grandmom and Pop's house to celebrate Christmas with my family. Later that night the doctor called again and said we could restart the feeds and there has been no bleeding since then. She had a very bad nose bleed the day before Christmas and they think she could have swallowed enough blood then for it to appear in her diaper. Just our luck!

Last Monday Ally started with a cold and was definitely needing some extra oxygen and extra care. We were certain we were headed for another stay at duPont but, Ally proved us wrong. The pulmonary doctors prescribed some antibiotics and had us increase Ally's breathing treatments. By the end of the week she was doing much better. Today we put her back on her regular breathing treatment schedule and have weaned her oxygen back to were it was.

To top it all off we only had a night nurse one night last week and no day nurses during the weekend. Our agency is working frantically to get our nights covered again. We were supposed to have a nurse last night but she called out sick. Which figured because I started back to work this morning. Luckily Ally's fairy godmother, Jeanne, offered to come stay up and care for Ally last night.

Nurse Jeanne was one of Ally's evening shift nurses at Bryn Mawr. Since we have been home I have called Jeanne numerous times for Ally advice, even on Christmas! Jeanne was truly one of our saving graces last year and she is off to a fantastic start for this year. Thanks again Jeanne.

We hope everyone had great holidays and we hope you are all excited about the new year! We are looking forward to better things this year, a fresh start. Just wanted to let you know that baby Carolyn (we had told you about her a few weeks ago, her daddy works with Shane.) is going to be coming home from the hospital soon. Thanks for all the prayers that you all have said for her.

Take care and enjoy the pictures.

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