Ally Heintz

Ally went to the OR today to have her splint removed that was left over from her transplant surgery, and also to see if they could place a G-tube.

She is back resting comfortably, the stent is out and the Docs were NOT able to place a G-tube.
They said that her spleen was enlarged (due to her previous liver disease) and in the way of them placing the tube. So they placed an NJ-tube into her bowel and are planning on starting her feeds that way. She will also have an NG tube set to suction to help drain her stomach. Until Ally's gut gets back to where she was before transplant, this will be the means of feeding. We are kinda back where we were a few months ago. It is going to take more time to work back to where we were with feeding. Everyone here though seems confident that we will get there. Its just going to take time. Imagine that, more time. That's our Ally:)

That's all for now, we will see how the feeding goes now through the night and over the next few days. Take Care.

Wow, thank you everyone for coming out yesterday to my church to have breakfast in my honor. I wish I could have been there to meet and greet all of you.

Mommy and Daddy could not believe how many people cared for me. In fact, they said they really didn't know that many of you. To think that complete strangers to our family would take the time to show just how much a loving community can be, really makes getting haelthier an easier job for me. All your prayers and support I know are being heard from God. Daddy says there is with no doubt a plan in store for me. I can't wait to let you know what it is.

Thanks to everyone who made the breakfast a success and took the time to help serve the 1,203 people all those yummy pancakes and french toast.

So you all know, today I was feeling much better. I was laughing, playing, and reading my fan mail that Mommy and Daddy brought to me from the breakfast. I am no longer needing any oxygen, and maybe in a day or so I will be back to my old settings on my vent. The doctors were in today and said I will be making a trip to the OR on Tues. at 2pm. This is to remove a stint from my liver transplant, and then maybe the docs will place a G tube in my belly for feeding. That still is undecided if that will happen. Cross your fingers and say a prayer, and maybe I will get it!! Other than that, today is a day of rest, and healing.
I will try to write again soon.

Love, Ally

Hi everyone, mommy said that I could write my own update today because I'm feeling much better. Since the update on Tuesday I have been doing very good. When my mommy arrived today I was awake and I played with her, I even gave her two smiles!

My doctors have stopped some of my meds and my most recent culture for influenza was negative. Unfortunately,I'm still on two meds that keep me really sedated. I am usually only awake for about an hour or two each day. The doctors had restarted my feeds but they had to stop them because I was vomitting. They think this is because of the sedating meds slowing down my GI system. My transplant docs are still very happy with my liver functions. Today my bilirubin was 0.9!!!

My mommy just told me that on Tuesday I'm making a quick trip to the OR. The transplant and GI docs will perform a scope to remove a biliary stint that was placed during my transplant. They are also going to try to place a G-tube endoscopically. Having a scope is not much fun but, if I get a G-tube I will no longer need a NG tube. That means for the first time in my life I would have no tube on my face, YEAH!!!

Mommy and Daddy said that I can't go to the breakfast that my church is having for me tomorrow, but they said that they would go and Ashley would eat some breakfast for me! Talk to everyone soon. Take care and thanks for all the prayers. Love, Ally

So sorry for the delay with this update. Ally has been keeping us and especially her nurses very busy. Fortunately, so far today has been a pretty good day.

The last update we posted was early Saturday afternoon and Ally was not doing so well. By later afternoon and throughout the evening she was doing much better. Mostly Ally was having respiratory distress with a lot of wheezing and difficulty moving air in and out. Sunday she had seemed much more stable. However, stability went out the window on Monday. Ally had a very up and down day yesterday and she ran Kelly, her nurse, ragged! Last evening the docs made yet another change to the ventilator but, this change seems to be helping alot.

Since last night Ally's heartrate has come down to the 120's and her carbon dioxide levels or end titles have come down from the low 90's to the high 50's. She was awake for a little this morning which amazes me since she is on numerous sedating meds. Also this morning Ally's feeds were restarted at a very small amount basically just to stimulate her gut. She also looks much better today and seems to be more comfortable. She is almost back to her weight that she was admitted at so the docs have decreased the continuous Lasix that she was receiving.

Again I'm so sorry we did not update sooner but, I will try to update by Thursday. I will be busy though, big sister Ashley is coming down tonight to see Ally for the first time in 10 days. She is very excited about staying at Rondald McDonald House and seeing her sister!

We arrived this morning to the hospital to find Ally doing even worse than yesterday. Ally has tested positive for influenza A (basically the flu). She has been having major respiratory issues, and is extremely uncomfortable. The docs are now giving Ally continous meds to help her get rid of the extra fluid she has on her body. They also put her back on continous meds to keep her sedated.This is because it is easier to ventilate her when she is not upset and fighting the ventilator support. The doctors said the next few days things could get really bad. So Ally is receiving constant supervision by a huge number of people.

Besides all the respiratory and Flu issues, the liver seems to be Ok for now. I won't say much more than that, because if I do, I will just jinx things, you know what I mean? Ally's bilirubin level is down to 1.5!!! Amazing!

Before I go, I must send a big Thank You to Lisa Reynolds (my boss from Vanguard) who stopped by today to visit and bring us lunch & goodies to get through the day. Just the time she spent talking with us was much appreciated, thanks Lisa. Thank you also for being so understanding with my time away from work, that in itself has been a life saver for our family.

Keep praying for Ally, and we will update again soon.

Ally today is not doing as well as the last two days. We kinda of expected this, since Ally's worst day after all her past surgeries was always the third day. She is much more swollen today in around her face and upper chest area. She also is very uncomfortable, and seems to be crying much more. Its been a very difficult morning to have to watch her feel so much more pain all over again.

Later today we are going to work on getting rid of some of that extra fluid, and making her more comfortable. Ally also has started back on her TPN fluid his morning. Remember, even though TPN was the cause of her liver failure, she still needs her nutrition. We just now need to start her formula feedings, and hopefully with time those feeds will increase enough to get rid of that TPN forever. GI has said that maybe this week we can think about slowly starting to feed her. I guess will wait and see. Ally will also have PT and OT coming in soon to start working with her again.

This weekend we will be posting some pictures of Ally so you can all see how she is doing.

Before I leave to go back to be with Ally, I thought I would post the next "Ally Event". Jill and I never have really mentioned to much about past events on the site, but a few people have told us they wanted to attend previous events and did not know or here about it on the site. Sorry for the late notice on this event, and I'm sure many of you may have already known, but our church has decided to have a breakfast for Ally to help support our family through this difficult time.

BREAKFAST FOR ALLY

Saturday Feb. 26th
St. John's Luthern Church
North Reading Avenue, Boyertown PA

All You Can Eat (served buffet style)
*Pancakes
*Texas French Toast
*Sausage & Scrapple
*Orange & Apple juices
*White & Chocolate milk
*Coffee-Decaf-Hot tea-Hot chocolate

Plus a great selection of take-home baked goods.

OPEN TO THE PUBLIC! Take out available

Adults: $6 Under 12 and Senior Citizens: $4

Tickets available in advanced and day of event.
For tickets call 610-367-0363.

Directions:
From King of Prussia
1.US-422 WEST - go 19.5 mi
2.Take the PA-100 NORTH exit towards ALLENTOWN - go 8.2 mi
3.Take the NEW BERLINVILLE exit - go 0.2 mi
4.Bear on MONTGOMERY AVE - go 0.3 mi
5.Continue on N READING AVE - go < 0.1 mi
6.Arrive at N READING AVE, BOYERTOWN. Church is on the right.

For other dirctions, please ask when purchasing tickets. Thank you.

We look forward to seeing, and meeting with all of you next Saturday at church. Hopefully by that time we may have caught up on some sleep.
You all have truly been Ally's Angels. Thank You!

Ally is having another good day. Some minor problems have come up but all in all things are looking good. I have just spoken to one of the transplant docs and both of them are very happy with how things are looking.

Ally has been having some issues with high glucose levels. This is not uncommon with the steroids so they have started her on an insulin drip. This morning they turned off her fentanyl(narcotic) and are now just giving her morphine when needed. They also took out her Arterial line and her foley catheter.

Of course Ally is Murphy's Law so since the catheter has been out her urine output has dropped considerably. Also her carbon dioxide levels had been on the rise and with out the arterial line they have been more difficult to monitor. They have made some changes in her ventilator settings and also changed her trache. She now has a cuffed trache in and that has eliminated her leak and is making it easier to ventilate her.

I am very happy to report that Ally's billirubin level today was 3.0 direct and 3.5 total. She is definitely loosing her golden orange glow. She is a little puffy today, mostly just in her face. I am still amazed how small her belly is even with a liver three times the size it should be. She opened her eyes a little today. The docs took down her dressing and although her incision is very large I think it looks fantastic.

We will update again tomorrow unless there is a change before than.

We know you all have been anxiously waiting this update. Nurse Karen, Shane said not to get your panties all in a bunch, he is too tired to update!

Ally is doing very well, actually I think we are a little surprised as to how well things are going, so far. She had an ultrasound done this morning that showed great blood flow to the liver and all the blood vessels look good. Her ventilator settings are pretty close to what they are at home except she is on some oxygen. The docs are optimistic that they will be able to wean that within the next 24hrs.

Ally was taken to the OR around 7pm, she was sent off to dreamland and the OR team started putting in some peripheral IV's and Arterial lines. Around 9pm her incision was made and they began working on freeing up her liver. At 11pm we saw a man walk into the hospital with a box marked "Fragile, organ and tissue for transplantaion". Needless to say it was Ally's new liver. Around 2am we were told that the liver was in and they were stitching it in place. Ally arrived from the OR to the PICU at 3:45am.

We spoke with Dr. Dunn and he was happy with how the procedure had gone. He advised us that nothing would be happening in the next 12hours and that it was in our best interest to get some rest. We stayed at the hospital till about 5am then checked into a hotel and then checked out around noon. When we arrived back at the hospital Ally was in good hands with Miss Barbara. (Thank you Miss Barbara for coming in today just to take care of Ally).

So far Ally really hasn't had any 3rd spacing (fluid retention) however, her urine output had dropped so they were giving her some albumin. She has three JP drains which have all been draining a minimal amount of fluids.

We know that Ally's liver came from Texas from an older child who suffered some kind of trauma. We thank god for helping this child's family choose the gift of life! We pray for their family and hope that their choice to donate helps them in their greif.

We also want to thank all of you for your prayers and words of encouragement. Our parents who spent the entire night here at the hospital, uncomfortable, with us. We also thank all the doctors and nurses that were called in to help care for Ally during her surgery. Thank you to Deb Frock (works in pre-op) for staying till 11:30, to check on Ally and to give us updates. Thank you again to Miss Barbara, we never have to worry about Ally when she is in your care. Also thank you to Aunt Jen and Uncle Clint for taking excellent care of Ashley.

Sorry for the long update and all the thank you's the update was starting to sound like an award show acceptance speech. We will try to update the site once a day. Take care,
Jill, Shane and Ally

Quick update, before I leave work to get to the hospital. Ally is scheduled for a liver transplant at 7pm tonight. She also did not have any bowel obstruction. Thank You GOD!!

We will try to update the site, tomorrow morning after the transplant.

Sorry for not updating sooner, but Ally is back in the hospital. This past weekend she was not feeling well, and in the middle of her second birthday party on Sunday, we noticed Ally had a high temperature. Needless to say, the party ended with us leaving for the emergency room Sunday evening. We finally we're able to get Ally into a room in the hospital at about 3:30am Monday. She seems to be doing a little better. The bad news is, the doctors are concerned Ally might have a bowel obstruction. The doctors took some x-rays last night, and if they can't determine anything from them, today she will have a barium study.

Jill and I asked the transplant team yesterday, that if she does have an obstruction, if it were possible at the time of surgery to fix the bowel, that we also just take a part of my liver so that Ally can get both surgeries done at once. We don't know the answer to that yet, because first we need the answer to whether or not she has an obstruction.

Later today, we will try to update the site with the results of the tests. Please keep Ally in your prayers today. She really needs all she can get.

Hi there everyone, thank you all for my happy birthday messages. Mommy and Daddy are still having a hard time believing that I am one year old. I am looking forward to my other birthday party coming up this weekend.

I am writing this message to you from duPont. I had to make another trip down here so I could get some more blood. My mommy and my nurse are hoping it is the last trip because I haven't had any blood in my diapers for about five days. Unfortunately the medicine that I'm taking to stop the bleeding makes me vomit, alot. Mommy told me she is going to get a job washing clothes because that is all she does anymore.

I'll get some more labs drawn on Monday and then we will see if I need to be transfused again. Other than that we are just waiting for our call.

Hope you all enjoyed my pictures, I think they are pretty cute! By the way my molars on top just broke through so now I have 10 teeth!!!

Wow!! Can you believe I am One year old today. Daddy and Mommy say this past year has felt more like 5 years rather than one. Needless to say, today is my big day.

Yesterday, we had one of my first of many party's that included my grams,pops, and even my Big pops showed up. We all had a great time. Mommy baked me a cake the night before and decorated it as my favorite character ELMO. I must admit, I was not sure what to do with the cake. My sister helped me blow out the candle, and she also didn't mind in helping me open my gifts too. I did however get some cake icing on my face. Not to worry my GI friends, I did not swallow any :)

After the party was over Mom and Dad cleaned up, and sent me to bed. I think I still had a few hours of partying in me, but Dad said to save it for next week, when we have our second party with Mommy's family.

Anyway, this morning, I thought it would be nice to let Mom and Dad know that even though I am now one, I still have many tricks up my sleeves for them.

Daddy was on duty this morning watching me, and I thought it would be funny to see if he noticed anything different about me. Oh course he did. I should of known he figure it out. It must of been all that great training he got at duPont to keep him on his toes, even with such a large lack of sleep.

You see, I thought it would be funny to pull my trach out and leave it tucked under my shirt as if it were still inside me working. Except Daddy figured it out when he heard me making sounds that were not like me. He quickly got Mommy to help, and when they tried to put the trach back in, it would not go back. Mommy however, was fast on her feet to get a smaller size trach, and finally got it back in place and hooked me to my vent. Through all that, I must say, I did very well at breathing on my own for about 5 minutes. My SAT level never left a 100%. Pretty good I must say, for pulling out my trach for the first time.

Well, the day is young, and I still have many of hours of partying left, but before I go, I would like to let you in on my birthday wish. The wish I have is to someday be able to thank each and everyone of you personally for helping me fight through the toughest year of my life. Wait, it's the only year of my life, right? Anyway, thank you for helping me, loving me, taking care of Mommy, Daddy, and Ashley, and for just praying and thinking of me. Without your love, support and care I know I wouldn't have made it this far. I bet you thought I was going to wish for a liver, huh? Well, not to be greedy in anyway, but that too would be a great wish to receive. Maybe soon... Love Ally.

Ally has had an okay week. However, I am writing this update from duPont while Ally is busy sleeping during a blood transfusion. Her nurse and I were hoping it would be a fairly short visit but they are giving her the blood over a four hour period.

She had some bleeding every day this week and the doctors are working on increasing some of her meds. They also set it up so we can draw blood at home for lab work and then I take it to Phoenixville hospital and they run the labs STAT. Her next labs we will draw on Monday morning and I can drop them off on my way to work. Ally is also set up to have another transfusion next Thursday here at duPont.

Otherwise things have been okay and we have been able to wean Ally's oxygen. So now she is just dependent on the vent but needs no supplemental oxygen. We are having a Birthday/Superbowl party for Ally. Shane's parents and his brother's family will be attending. Her 2nd party will be next weekend for my family because Grandmom and Grandpop are reluctantly heading out of town for a few days. I insisted they go because if they leave we will definitely get a call for a liver!

Hope everyone enjoys their weekend. Maybe there will be some Birthday pictures on the site on Monday. Ally says "GO EAGLES"!

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.

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!

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.

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 . . .

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

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

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.

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.

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!

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.

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!

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.