Ally Heintz

Hi everyone, Happy Halloween! My sister and I are really enjoying this holiday. Since I'm not allowed to have candy, the nurses at duPont gave me a beautiful quilt instead. Before I forget Happy Birthday Millie!!! (In case you all forgot Millie was my night shift mommy in the Bryn Mawr NICU.)

Everyone one here thought I was so adorable in my costume. They even took pictures of me and my sister and are going to submit them so that we can be in the newsletter. You can't buy my costume it was a made by mommy original.

I'm doing pretty well. The doctors finally changed my formula to a low carb formula. It was about time I jumped on the low carb band wagon! For some reason it makes me pee a lot more, but I think my GI doctors will like that. My doctors are also going to try to get me off oxygen. That means my ventilator won't have to be hooked up to an oxygen tank. Instead, the ventilator will use room air to help me breathe.

Mommy and Daddy are ready for their 24hr stay over. Then they have a big meeting planned on Wednesday. Maybe sometime soon they will let me give out the secret date of when I am coming home. My nursing agency has nurses to cover almost all the time I need. The only time not really covered is the weekend night shift. Bryn Mawr night shift nurses are welcome to apply.( Ha Ha)

Before I go I wanted to let everyone know that the Bryn Mawr NICU staff is sponsoring a Beef & Beer in my honor. The money raised will help my parents with some of my medical costs and will help them to pay for their stay at the Ronald McDonald House. All the information is listed below. There are only 150 tickets available. So don't forget to call and order some if you would like to go.

BEEF & BEER

Saturday, Nov. 20th
7p.m.–11p.m.

King of Prussia Fire Hall
170 Allendale Road
King of Prussia, Pa.

Live Entertainment by
ROCKHARDFORTY Band

Tickets are $30.00 and advance sale only!

For information and tickets call:
Jeanne Ramella 610-287-4634
Joanne McTamney 610-828-3760

Ally made out well today. She has her new central line and it is working well. The new line is in her chest and she has already figured out how to play with it. Ally enjoys being naked but, she will definitely be wearing a shirt now.

Everything else is good. Later today we will begin our training for Ally's IV fluids. We have to demonstrate CPR one more time and then our training is pretty much complete. We are planning to do our 24hour stay over on November 1st.

Ally is ready for Halloween and we will be putting up some pictures of her in her costume. Look for new pictures and a new update sometime this weekend.

Ally never went to the OR yesterday. Her surgeons were too busy and so was the OR. She will be going sometime today. I will update this evening.

Hey everyone I don't have the best news this morning but, it could always be worse. I'm probably going to make a little trip to the OR today or sometime later this week. The cuff that helps to hold my central line in place came out over the weekend. It's not that big of a deal and actually, my central line is still working. However, I'm sure my surgeon will want to replace it.

This will just be a short trip to the OR and I'm thinking I can really catch up on my sleep. Mommy and Daddy wanted me to tell you all not to worry this is a simple procedure and I'll do fine. My surgeon will come by to talk to Mommy sometime today and then they will decide when I will get my new central line. Mommy will update sometime later in the day or in the evening.

Nice chatting with all of you. I'm going to go see what other kinds of trouble I can get into!!!

No more tears everyone. Daddy and I got a little carried away with our last message. Mommy is going to help me write this one.

Mommy had a very nice birthday and wanted to say thanks for all the happy birthday messages. She managed to only call my nurse one time yestereday. I was very well behaved and my nurse helped me get back on the "home" ventilator. Mommy was very happy when she got here last night and saw I got rid of the big vent.

I also got to go up a little with my feeds. Today they are gonna take some more stuff out of my IV fluids since I'm doing well with my feeds.

Mommy and Daddy will probably complete their training this week. Then they will have to stay with me for 24hours and provide all of my care. After that we have to have a big meeting with all my specialists and the people that will care for me when I get home. That will be my dicharge meeting. Once that is all complete I'm home free!

Mommy and Daddy said I cannot let out the secret date. They won't even tell my grandparents. I have to go nap now, I'm exhausted from all this writing I keep doing!

Happy Birthday Mommy!!!
Ashley reminded me last time she was here to visist me, that today was your birthday. Soon you'll be as old as daddy:)

Mommy, I hope today you have a nice relaxing time shopping, and spending time with your Mom. Don't worry about me. I will see you later tonight. Don't think I won't miss you, I will, but you so deserve this day to take a break and have some fun.

Mommy, if it weren't for your strong will, determination, and continous love, I'm not sure how I would have made it through all this. I've heard people use all those great qualities to describe me, but really Mommy it is you that they should be talking about. You have done so much for Ashley, Daddy, and me over these last 9 months. It is you Mommy that I have learned to be brave, how to smile so beautifully, show compansion for others, forgiving, and caring. And still through all the pain and suffering we have felt, the one thing that keeps us strong as a family is HOPE!!

Mommy, thank you so much for teaching me these great things in such a difficult time. Not only have I learned from you on how to be a strong little girl, but I know that others watching you, help me, have seen all these great things also. You have I'm sure change the way people think about how lucky they are to have such healthy children, and not to take so much that has been given to them for granted. We can only hope and pray they take these life lessons learned from our family to be more aware of others who may need the help also.

One day when we get through all this Daddy said we can take a really long vacation together as a family. Can you imagine that? All of us together?

Well, Mommy that may happen sooner than most people may think. That's right! The doctor's said all I have to do is not catch any more colds, remain stable, and that you and Dad need to complete all your training, and I then can come home!! I know what the date is you have picked for me to come home, and I think for now we will keep it our little secret until the day before. Then we can let all these great people who have been praying for us, know the great news of me finally coming home!! How exciting. Nothing like building in a little excitment to the website, huh, mommy?

Well, I must go now Mommy, all this typing is making me sleepy. I just wanted to thank you, tell you how much Ashley, Daddy, and me love you, and that I wish you the best birthday!! And hopefully you will get your birthday wish soon;)

Love Always, Ally

Ally has had a pretty stable week. Her central line is still working! She is still on the "regular" ventilator and is very comfortable. She is getting full strength formula again and she is at 16cc/hour.

Not much else to update. Shane and I are done with the majority of our teaching we still have a few things to work on. We are really going to try and put some new pictures up this weekend, but I won't make any promises!

Ally never made it to the OR today. She had a fever last night and has had a large increase in secretions out of her trache. More than likely she has a cold. So far all of her cultures have been negative. The surgery team thought it was in Ally's best interest to wait to go to the OR until she is feeling better.

In the meantime the PICU docs placed a femoral line in Ally's left leg. This will not last as long as a central line, but it is better than just a regular peripheral IV.

Later in the day, a nurse who specializes in central lines, came by to see Ally. She tried once more to flush Ally's line with a special medication and it WORKED!!! I was definitely shocked along with everyone else in the PICU. So currently her central line is working and hopefully it will keep working. Like I said in the last update, this was not the first time we had a problem with her central line so we'll see what happens.

The only other change is that Ally had to go back on the "regular" ventilator. This is probably due to the her cold. Again, we'll see what happens. Ally certainly likes to keep us on our toes. I will update later in the week.

Nothing like starting the week on a bad note. Ally will be headed to the OR sometime on Monday to have a new central line placed. We have had occasional problems with this line ever since it has been placed. But earlier today the line must have clotted and the docs have been unable to get it working again. This should be a fairly simple procedure but, it does require Ally to be under anesthesia.

Ally's feeds have been going very well. Friday she went to full strength formula and seems to be tolerating it well. She is still at 15cc/hour. She is doing well on the "home" ventilator. She did require some extra oxygen today, mostly because everyone was messing with her all day and she was getting pretty annoyed.

I will update sometime tomorrow to let everyone know how she makes out in the OR. We have no idea when she is going in, so the update might not be until tomorrow night. Take care and say an extra prayer today for Ally.

Ally has had a good week and had a wonderful 8 month birthday. Her 4th tooth has finally broken through. She is currently getting 15cc/hour of 3/4 strength formula. Tomorrow they may be taking her up to full strength formula.

On Tuesday she was put back on the "home" ventilator and has been doing well. She has been very busy this week with occupational, physical and speech therapy. We have worked out a schedule and Ally has been seeing them 3-5 times a week.

Other than that no major changes. Once Ally gets to full strength formula the doctors will probably only be increasing her feeds by 2cc/week. We are busy finishing up all of our training so that we can get Ally home. Still no definite date, but it should be some time in November.

By the way Ashley had a terrific 2nd birthday. We went to Chucke Cheese and she had a blast. We will try to put some new pictures up of Ashley and Ally.

Ally is having a good weekend. She has been very happy and has been busy smiling. Yesterday she even got to visit with her cousins, Danielle and Taylor.

Her ventilator settings have been good and hopefully they will be trying her on the "home" ventilator agian this week.

She is getting about 12cc/hour of half strength progestemil. They are going up one cc every 12 hours. Once she reaches 15cc/hour they will re-evalute things and try her on full strength formula.

All in all she is doing well and she is continuing with slow, steady progress! I will update probably on Wednesday or Thursday. We have another meeting with Dr. Katz and the GI doctors on Wednesday. Wednesday is also Ashley's Birthday. Shane has the day off and we might be going to Chucke Cheese!