Ally Heintz

Being home is so nice! Ally's baptism was great and the weather even cleared in time for the picnic. It was so nice to see so many of our friends and family. It was especially nice because so many people that were there had never had the opportunity to meet Ally before this time.

Otherwise things are going well. We drew labs yesterday and I dropped them off at Phoenixville hospital on my way to work. Her labs were pretty good, that means we will be able to start adding a special powder to Ally's formula which increase her protein and calorie ingestion. Hopefully if she tolerates this addition they will be able to decrease her IV fluids a little. She is still receiving IV antibiotics for her most recent infection. They should be done on Saturday.

We are planning a few days away in the mountains this coming weekend so I probably won't update again until next week. Hope everyone has a wonderful weekend and a great holiday.

Ally made it home yesterday. Her trip to the OR went well. They had tried to first place the new central line in her right side of her chest, but could not find a good enough vein. So the line is now in just about the same place as the old one , in her left chest. The poor girl has so many bruises from trying to get the line placed, and from all the IV lines placed while not having the central line.

As always though, Ally handles it all with a smile! She is now at home resting comfortably.

We look forward to seeing you all at the baptism, and if you RSVP at the picnic. Church starts at 10:30. My suggestion would be to get there early, it seems we could have quite a turn out.

Don't forget to check out the new photos. Enjoy.

Ally will be going to the OR in the morning to get a new central line. The infection in her old line would not clear, so they had pulled that line yesterday. She has had some peripheral IV's placed so that she can receive IV fluids. If all goes well tomorrow we should be allowed to come home tomorrow afternoon.

Ally had a big milestone today! She was out of her crib playing on a mat that we put down on the floor for her. She was sitting in front of the crib and grabbed onto the bars and pulled herself up into a standing position. She was very proud of herself and continued to stand and play at the crib for a few minutes!!

Anyone who is planning to come Sunday to the baptism or picnic please do not bring anything along. The food has been taken care of and remember NO gifts!

We will try to update tomorrow night to let you know how Ally made out. Pray for a good trip to the OR and that Ally gets to come home tomorrow.

Just a quick update to let everyone know that the Baptism and picnic are back on for this Sunday the 28th!

I just got done talking with the surgeon and she said that if Ally gets two negative cultures(another culture was taken last night and one was taken this morning)than they will let her go home on Thursday with antibiotics at home. If those two cultures are positive than they will pull her central line and place a new one on Friday. In which case we would go home Firday afternoon or Saturday morning.

Ally has not run a fever since Sunday and she has been very happy and is busy keeping all the nurses and docs entertained.

Anyone who needs information about the baptism can e-mail or call me. Please try to RSVP by Friday. All the information for times and location for the baptism and picnic are listed in Ally's update from August 17th. If you have questions or need to RSVP the best place is to e-mail at aajsheintz@yahoo.com. My cell number is 610-698-3181 you can leave a message there, and our home phone is 215-234-9686.

Thanks again for all the prayers, we hope to see everyone soon!

It looks like Sunday's baptism will have to wait. Saturday into early Sunday morning, Ally started with a temperature. Needless to say she has been re-admitted back to duPont on Sunday morning.

Ally's temperature went has high as 104.8 We sent for cultures, and the first one came back positive for infection in her central line. They are going to treat Ally for 7 days on antibiotics, and then next week, there is talk of pulling her central line and placing a new one.
They are going to do this because she has had numerous repairs to the line, and the line has been in that location now for 9 months.

This morning Ally was resting comfortably, and hadn't had a fever for a few hours. So hopefully the infection will clear soon. A line infection can be a very serious issue, especially with how things go with Ally.

So, it looks like another few weeks in the hospital and living in Delaware. Sorry to anyone who had changed their plans to see Ally's baptism, but we are going to try to see if there is time in September to try again. We will continue to let you know more about how she is doing, and what the plans are for her baptism and picnic soon.

Yet another eventful day!!! It was actually a very nice day up until about 6pm when Ally's G-tube balloon came out. Luckily the whole tube did not come out!

Let's rewind a little so you all can get the full effect of our fun evening. On Monday I had Ashley at the park for a little bit of mommy and Ashley alone time. She told me she thought we should have a picnic in the park. What a great idea, we can have it on Wednesday night and we'll invite Gram and Pop too! So we made our plans and Ashley had been looking forward to her picnic ever since. More importantly she was looking forward to an evening of playground fun.

We arrived at the park around 5:45, we set up in our picnic area and Gram and I took the girls to the swings while the guys were grilling. (Don't forget to check out the new videos of the girls swinging.) Around 6pm Ally started to cough a little and then I heard a funny sound coming from her belly. I picked up her shirt and saw her G-tube was hanging out with the balloon still inflated. Panic set in!!! I rushed down to Shane to get the car keys because we only have one syringe for the G-tube balloon, which of course was at home in Ally's room.

On my way home I called the hospital and talked to the on call doc for transplant. He said to deflate the balloon push the tube in and re-inflate the balloon but just inflate it a little. Well the tube stayed in for about 5 minutes. Needless to say after an extensive tape job the tube is now staying in place. This means we are off to duPont tomorrow to have Ally's tube checked in interventional radiology. Hopefully we can have her labs drawn while we are there so that we don't have to go back down on Monday.

Ally of course was a trooper and laughed and played through all of this. Ashley was a little upset because Mommy left so suddenly but after dinner she got to play for a while on the playground and the night seemed to turn out okay even after all of that!

On to some good news. We have finally made plans to have Ally baptized. Anyone who is reading this and who has followed and supported Ally's progress is invited to attend. Her baptism will be Sunday August 28th at 10:30a.m. at St. John's Lutheran Church in Boyertown, PA. Afterwards we are planning a celebration picnic at Green Lane Park at 2:30p.m. This is just a picnic, please NO gifts for the baptism. Ally has not been able to attend many other events that have been held for her and we just thought a picnic would be a nice way for people to get to meet Ally. I am listing the addresses below, please use mapquest for directions or when you call to RSVP ask for directions.

Baptism: St. John's Evangelical Lutheran Church
45 North Reading Avenue
Boyertown, PA 19512
Sunday August 28th @ 10;30

The picnic will take place at Green Lane Park, Deep Creek Lake, 2144 Snyder Rd. Green Lane, PA 18054. You can enter the park through Snyder Rd, which you can turn onto from Deep Creek Rd. The iron bridge that enters the Park from Rt. 29 is closed. When entering from Snyder Rd. the picnic will be on your left hand side in front of the playground. There is a small pavillon but plenty of shade.There are plenty of picnic tables but please bring lawn chairs if you would like. If you are attending both events and need something to do to kill time in between, there is boating, biking, hiking, and fishing at the park . For more info and further directions you can visit www.Montocopa.org/Parks.

Please call our house to RSVP for the picnic or for further directions. 215-234-9686 you can also email to aajsheintz@yahoo.com. Please RSVP by Thursday August, 25th.

Sorry this is such short notice but, that is planning with Ally! Remember NO gifts allowed.

Not much news to report since being home. We are still trying to get settled back into our home, after being in the hospital for 5 weeks. It was beginging to feel like our home was actually just a summer house to visit.

Ally has being doing fine. We sent for labs the other day, only to have them messed up by the lab in Tennessee. So this morining JIll made an appointment with Phoenixville Hospital to have our labs worked through them. We'll see how this works out. Yet one more hospital to add to our list. Other than that, Ally has being enjoying herself and her time at home. She currently is still at 8cc/hr. on the feeds, which hopefully we will be able to advance this week.

So you are all aware, Ally's next benefit is approaching fast. Sorry for the delay with posting it to the site, I know many of you already have your tickets, but if you hurry, I'm told there are still a few left. Most likely to be sold out this week. Heres the information:

Basket Bingo for Ally, September 25th 1 PM at Bally Fire Co. for tickets and directions call LuAnn at 610-367-0363. 

Thanks again for all the help and prayers you continue to send Ally and our family!!

Yeah!!! We finally made it home!!! Around 3pm this afternoon Ally, Ashley, Grandmom and myself, left duPont and headed straight home! Of course this was all after some more exciting events.

Shane last updated on Saturday so I'll pick up where he left off. Saturday evening we had come home to spend a night at home. We had Grandmom lined up to visit Ally Sunday morning so we didn't have to be back at the hospital until Sunday afternoon! However I wasn't thinking and decided to go grocery shopping Saturday night since we had no food in our house! This was obviously the jinx!! Sunday we got up early and went for a bike ride. When we got back home I called the hospital to check on Ally only to find out that she was very unhappy and that her liver functions had gone up yet again.

Not wanting to waste any time the docs decided to start Ally on high doses of IV steroids, again. When I arrived Sunday afternoon she was back to her normal happy Ally. Monday morning rolled around and yeah, her liver functions had started to come down again. Unfortunately they told me that they would be giving Ally a complete dose of IV steroids which meant we would have to stay until Friday. I expressed that I was very unhappy with that and after thinking things through the docs decided it was best to get Ally home and would allow me to do the steroids and IV antibiotics. This meant Ally could come home on Wednesday.

Yesterday, I arrived at the hospital, met by the transplant team informing that Ally's one liver function had skyrocketed over 1000 this was obviously concerning, however, her other two liver functions had continued to come down. This all meant that Ally needed an ultrasound to see if a bile duct had become constricted. That would mean Ally would need to have a stent placed to keep it open. Of course they could not see anything on the ultrasound so she need to go for a CT scan. The problem with a CT scan is that the patient ( if a child) usually needs to be mildly sedated or asleep so that they lie still for the scan. Ally does not sedate easily!

After her 4th dose of 2 different kinds of mild sedation meds it became apparent that Ally would not go to sleep. Now the big guns were coming out and Ally would definitely go to sleep with a little Propofol. Finally asleep, they began to inject the contrast which is used for CT scans, through Ally's central line. What should happen?? That's right, Ally's central line ruptures!!! Now we need to clamp that off and hope that it can be repaired, yet again. Also now Ally needs to have an IV started so that they can complete the CT scan. Needless to say she was now awake again and was letting everyone know that she was not happy with the many sticks that it took to start an IV.

Finally the CT scan was completed and her central line was repaired and the best news of all, the biled ducts looked okay!
Go figure, I guess we just needed a little excitement. So for now we are home and Ally is resting comfortably, We have to draw labs tomorrow but we are not scheduled to go to the hospital until August 22nd. If we make it that long! I have not gone more than 5 days without a trip to duPont since January 3rd, so I'm really looking forward to this 10 day break!

We'll keep everyone posted on any news, I shot some new video of Ally the other day so hopefully Shane can put that on the computer soon. Thanks for all the prayers during this last hospital stay it was a very long five weeks!

Ally continues to keep things interesting. Wednesday Ally had an upper GI test done to see why things were moving so fast through her bowel, and not allowing her to advance on feeds. Much to our surprise, Ally has a loop of bowel that is dilated. When the contrast moved through that area everything slowed up, then continued down through the rest of the bowel. This dilated portion is above the area from last year where she had this problem before. That was the time she had the STEP procedure done. This portion is much smaller, and the doctors are not sure what will need to be done with it. This could mean yet another surgery. Dr Dunn is still discussing a plan of what he thinks needs to be done. We know that touching Ally's bowel, could mean more time of not feeding well, and an extended amount of time in the hospital. All the things she just does not need right now.

Thursday, Ally then started with a temperature. They started the meds to bring down the temp. It seems to them that the loop of bowel that is dilated, could be creating bacterial overgrowth casuing her to spike a fever. Also Thursday night, we started Ally on meds to control the amount of bile her gut is producing. This is one of our last options to help Ally advance in her feeds. So far it seems to be helping. The last day or so she has had less output, and better looking stools. I know that doesn't sound so great, but as Dr. Katz once said "Stool is my life". And is ours for sure right now! If things continue to move in the right direction, we will advance feeds. Right now Ally is still at 5cc/hr. 3/4 strength formula. I think the next move is to go to 5cc/hr. full strength. Then move on to whatever she tolerates from there. Hoping the whole time her liver can sustain the full strength TPN.

These last 5 weeks have been the toughest weeks yet for us since Ally has been born. Maybe its because we have not made any progress yet since having a new liver. Maybe its because we made the decision for this last surgery. Maybe its because we may have to make more tough decisions to help Ally through all of this. Or maybe its because we are afraid of what might happen next. There are so many things that could happen, and we know we can only control so much. To explain everything that we feel is impossible, and to expect anyone to understand is just the same. Thorough all of this, we will continue to keep forging ahead giving Ally every possible chance at a happy life. To give up on her when we learned she had gastroschisis was not an option then, and to give up on her now is just the same. The only difference between now and then is we are a much stronger family, knowledgable, and understand what it means to have friends and family that support us through tough times. It truly makes you aware of who is really there to help when you need it most. To this day, our parents still have not yet waivered a day in supporting us, Ally and Ashley. I guess this is were we get most our strength from. Of course there are also those few, who once were strangers, and are now closer than family.

Well enough of that, Nurse Karen said she never liked when I wrote these types of things.

Our hope is that Ally will be coming home Tuesday. I guess we will wait and see until then.
Continue to pray for Ally and her feeds. Your prayers I'm sure are being heard.

Well, this past week was a very busy week. We spent last Saturday at the hospital with Ally, and that evening drove 2 hours with Ashley to O.C. Maryland to stay over night with Jills family. Sunday, was a great day at the beach. Ashley had fun, but refused to go near the water. Later that evening, Jill and I drove back to Wilmington to spend the night with Ally. Needless to say, before we left to go back to the hospital, we had received news that Ally's liver functions had sky rocketed and her wound around her GJ tube was getting worse. So much so that you could see Ally's stomach. The hole was about the size of a quarter. We were not very happy to hear this all happened it such a short amount of time since we had left.

Once back at the hospital Sunday, we played with Ally, and she of course was nothing but smiles. I still can't figure why she thinks all this is such fun. If I had that wound, I would not be near as happy. Anyway, Monday came and Jill and I spent most the day at duPont. Ashley stayed with Grandmom and Pop at the shore. As Monday progressed, we had a morning meeting with the surgeons to discuss why and what steps needed to take place in order for Ally's wound to heal. After some talking, it was decided that only one person a day, clean the wound. That would either be the surgeon or Jill, no one else. This way Ally would get consistent care to the wound. So far it seems to be getting better. It will take some time to heal.

Monday evening, Jill and I went back to the beach, and spent all day Tuesday there. This was only Jill's second whole day without ever seeing Ally. Tuesday was fun, but it was difficult to have to much fun, knowing Ally lay in the hospital with that opened wound. I don't think it was totally possible for Jill and I to completly relax knowing Ally could not be with us. And to make things harder, seeing others with their entire family at the beach, only adds to guilt and hurt you feel being there without Ally. We did our best to show Ashley a good time, but by Wednesday, it was time to get back to our reality, and travel back to duPont.

Wednesday, Ally was so happy to see us. In fact we couldn't go to dinner until 8:30 that night, because she was scared we would not be back.

Thursday and Friday I went to work while Jill stayed with Ally.

This Saturday, Ashley came back from the shore and spent the rest of the weekend with us at the hospital. She was so glad to spend time with Ally. She really did miss her.

So as you can see the week was busy.

Now for how Ally is doing. Wednesday when we first seen Ally, we were a bit disappointed to see she was only feeding at 5cc/hr. Before Ally had the GJ tube surgery, she was at 20cc/hr. It now seems that Ally's bowel does not want to tolerate the formula as well as before. Why? Who knows. If I knew I could probably solve this all on my own. Ally the past 5 days has had stool after stool. Her poor little bottom is getting to be so sore and broken down. The good news from this is that things are moving through, and she is not having any drainage back up into her stomach and out into her g-tube bag. The bad news is that things are moving so fast, that her bowel in not absorbing the nutrients like it should, causing us not to be able to advance feeds. This is very bad!!!! And is causing alot of stress for both Jill and I. We know what this could mean. As long as Ally can't advance feeds, her TPN (IV fluid or feed) stays at a higher dose, with all the amino acids in it which destroy the liver. This is what happend before. Dr. Dunn said today that we will continue to hope things move in the right direction, the liver holds up, and we can move forward. But it will be slow. If Ally's liver starts to fail because of the TPN, she will then need a liver and bowel transplant. Which means the odds of survival are not good. We also would be spending time out in Pittsburgh for that procedure. Making everthing that much harder on all of us. To think that we haven't been able to sleep in our own beds in weeks, if we had to go across the state it would be much longer than weeks from home. Lets hope we don't have to go that route!

Now you can see why its hard to take a break and enjoy things. Its because of issues and stress like this. Please pray that Ally's bowel starts to tolerate her feeds and she can continue to take the steps forward to recovery from her wound.

Enjoy the new photos.