Ally Heintz

HO HO HO! It's Santa Ally wishing everyone Happy Holidays. I hope to get a chance to write on Christmas day but things don't always go as planned.

I have some good news and bad news to report, but a lot more good than bad. On Friday I spent the day at duPont for some check up appointments. First I saw my doctor for ricketts and then I had a hearing test. My bone doctor told me it would be good to start doing weight bearing activities. Then I had a hearing test which took forever but the audiologist was very nice and she told me I had no hearing loss. When I was in the PICU I had a hearing test and they had told me I had hearing loss in my left ear.

On Saturday I was busy for Mommy, while I was sleeping I pulled out my ND feeding tube. This is supposed to mean I have to go to duPont to get a new one. However, my mommy was pretty upset and she said she refused to go to that hospital again! So, she started feeding me NG. She didn't expect this to go very well but every time she checked my residual I had nothing and I wasn't spitting up any more than what I usually do. Monday she called my doctors and they said it was great if I can tolerate being fed in my belly!

Now onto the not so good news. My mommy and daddy are pretty sad because starting January we don't have a regular night shift nurse. My nurse, Karol, is taking a position closer to her house, she normally drives over an hour to take care of me. The only nights we have covered are Mondays and Wednesdays and mommy is supposed to start working again. If any nurses out there want to, or if anyone knows anyone who does home care, please feel free to call my nursing agency and sign up for some hours! We also have no day coverage on our weekends. It is going to be a long month.

Sorry that there are no recent pictures of me, you can file your complaints with my daddy, he is the one in charge of the picture part of the website.I want to congratulate nurse Millie on becoming a grandmom and Miss Barbara, who is expecting another grandbaby. Take care everyone, only four more days till Santa!

Love Ally

P.S. I wasn't joking about the nursing thing if anyone is interested they can call my mommy at 215-234-9686 or you can call Harleysville Pediatric Home Care at 215-513-7455

Hi everyone, since my mommy's so lazy about writing updates I decided I better start writing my own updates. I got a new ND tube the other day we even talked the doctor into putting a smaller tube in. He was also nice enough to insert it a little further into my bowel so that the next time I try to pull it out it won't come out so easy. My nurse and my mommy were very happy because we were only at the hospital for one hour. Of course that meant we were home before 5 o'clock so they both had to make dinner that night!

Everything else is going well. I'm doing really well at sitting up by myself. The early intervention people have already found me an occupational and speech therapist and now they are working on finding me a physical therapist. I can't wait to start working with them. I know they will help me get stronger.

I'm also happy to say I'm doing much better with my breathing because I'm not wheezing as much. They are finally giving me some more food around this place. It is still that same yucky formula but now I am getting 19cc an hour and I think I'm doing a good job at tolerating that.

Hope all of you are doing well. I know it is a busy time of year but my daddy works with someone who has a very sick baby. So, if all of you could take the time to say a prayer for baby Carolyn and her family, I would really appreciate it!
Love and Hugs,
Ally

I know you are all probably shocked that we are finally writing an update, but I'm sure we don't have to remind you that we have been busy!

Ally has been doing well. She had her first follow up appointments at duPont last week on Nov. 30th. She made out well, we saw her pulmonary and GI doctors and then Dr. Katz (Ally's surgeon). The GI docs were very pleased with Ally's progress and said that since she was doing so well we could pull out her NG tube. So now she only has her ND tube which she gets her feeds and her medicine through. Pulmonary said that we could start to wean Ally's oxygen. So now she is only getting a quarter of a liter and before she was getting a half liter.

We have also had some fun in the past two weeks. On Sunday we all went and got a Christmas tree together. We are definitely insane!!! We will put some pictures up soon. I also was busy taking pictures of Ally in her Christmas dress!

Ally of course has also given us some hectic days. Last week on our way to the pediatrician she plugged off her trache and her nurse and I had to do an emergency trache change. When we were done with that Ally gave us a nice big smile and took a long nap. I was the one who needed a nap! Last night her pulse-ox monitor was not working. This meant we were unable to monitor Ally's heartrate and oxygenation levels. Today Ally gave us an extra special gift by pulling out her ND tube. That means tomorrow morning her nurse and I will be headed to duPont or Bryn Mawr to have a new tube placed. I'm hoping we can have it done at Bryn Mawr which would be much more convenient.

So, there it is two weeks in a nut shell! I will try not to let things go so long until the next update but I'm not making any promises. Hope everyone is well and looking forward to the holidays!

Just wanted to write and let you all know that I am back at home again. I came home yesterday, but not until about 7pm and mommy said that we were too busy to write an update. I'm feeling well again, I basically just had a cold. Unfortunately, I think I gave my cold to my big sis because she wasn't feeling well today.

Mommy and Daddy said that they had a lot of fun at my beef and beer. They are so grateful for all the help and all the support they have received. So thank you, thank you, thank you, everyone! I'll write again soon. Goodnight and kisses

Love, Ally

Well, bad news. Ally is back in the hospital at duPont. The last few days she has been having breathing difficulties, and after calling the hospital to see what to do to help her, they suggested we bring her in immediately. So last night at 7pm we made the trip. The first hour of driving Ally seemed fine, it was the last 5 miles that gave us the scare of our lives. I was driving, Jill was in the back seat with Ally, and my mother was riding up front with me. When Ally thought she'd make the trip a real heart stopper.
Literally. Ally all of a suddened started
d-satting (low 40's) and then stopped breathing. Thankfully, Jill started bagging her and slowly Ally came back around. Some how after speeding through numerous red lights and running people off the road, we made it to duPont. Ally is now resting comfortably in the PICU. It seems she might have picked up a virus. Jill and I are both praying this is a short stay. I guess well wait and see.

p.s. Jill and I are still going to try to make it to the beef and beer.

Shane

Hi everyone, just writing to tell all of you how well I'm doing. My first week home went pretty well. I tried my best to behave. The only naughty thing I did was I pulled out my NG tube today. Mommy and my nurse where going to re-tape it after they finished my trache care, but I decided I wanted a new one! For those of you who don't know having an NG tube put down is no fun, but I'm so used to it that I don't really get upset about it.

Everything else has been great. I love playing with my sister I keep my eyes on her all the time. Mommy and Daddy get so happy when they see me and my sister play together. Ashley is really good at being the little helper for Mommy. She even has her own stethoscope and she listens to me breathe. She will be a great nurse or respiratory therapist one day!

I have to go catch some Z's now. Mommy and Daddy are alone with me tonight, no nurse. I think they'll do okay. My nurse for tomorrow is coming early at 6am to give Mommy and Daddy some extra time to sleep in the morning. My sister is spending the night at Grandmom and Grandpop's house so Mommy and Daddy only have to take care of me.

P.S. Mommy and Daddy just told me that all of my Beef and Beer tickets are sold. I'm sorry I can't come and see everyone, but I'm not allowed to be around that many people. Mommy and Daddy are really excited though, they can't wait to see everyone and to thank everyone for all their help. I gotta go and say my prayers before I fall asleep.

Goodnight, love Ally

Surprise!! Today I came home. Can you believe it? Mommy and Daddy thought this day would never come.
What a long day it has been. We left duPont at Noon, and arrived home by ambulance around 1:30p.m. The day was extremely busy. There were many people in and out of the house to help set up equipment, and get me settled in. All my nurses have been great so far. We'll see how my first night goes tonight.

Mommy and Daddy are very tired, and know that this week will be very busy. Tomorrow, at noon I have my first doctors appointment with the pediatrician.

Sister Ashley also has been great at welcoming me home. She brought many of her toys in to my room to show me how to play. I think we are going to make great playmates & sisters!

Before I doze off to sleep, let me thank you all once again at helping Mommy & Daddy get me home, safe and sound. If not for all your prayers & well wishes, I'm not sure all of this would have been posssible. Thank God, for all you great nurses and doctors for taking such great care of me. You all have been such a huge part at getting me home. I will miss you all, but will always keep you close to my heart.

Please remember to keep checking in on me. Even though I'm home, we still have a lot of work ahead of us. One thing for certain, we will continue to forge ahead, and make progress on getting me better.

P.S. If you would like to visit, please feel free to stop by. But call first. 215-234-9686. No colds or virsus please :)

See and talk to you later.
Love Ally

It feels like forever since I have updated this site. Ally has been doing well. Her doctors are busy trying to make some final adjustments on her feeds and IV fluids.

Ally's body didn't really agree with that low carb high protein formula. She must take after me I prefer carbs over protein! Today I talked with her GI doctors and they are switching her back to the formula she was on before.

Our 24hour stay over went fine. Ally slept all night which made it even easier. We had a big meeting yesterday and Ally's home nursing agency was there. Three of her nurses for home were there and meeting them definitely releived some of our anxiety about having people in our home. She currently is assigned to five nurses so we need to meet the other two.

We do have a pretty definite date for Ally to come home, but we still aren't sharing it. However, we will probably post it soon! There are still tickets available for Ally's beef and beer. The information is posted below. Don't forget to keep checking for the homecoming update!!!


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

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!

So sorry about the update yesterday. I'm not sure who that ranting lunatic was that wrote the update!! Today has been a better day and our meeting helped releive some of the anxiety we were feeling.

Dr. Katz assured us that things were under control and that she and the GI doctors are the people managing Ally's feedings. Ally is now getting about 7cc/hour of diluted formula. She is still tolerating this well. She will be increased by 1cc every 6hrs. When she reaches about 12cc/hour the will then start to increase the strength of the formula.

The overall plan is to have Ally home in approximately 6weeks. We know this sounds fantastic, but Ally will have to remain stable to meet this goal. That means stable with feeding and respiratoy.

We have decided on a home nursing agency, a home equipment company, and infusion company who will all be treating Ally once she is home. The infusion company will be taking care of all of Ally's pharmacy needs along with managing her IV fluids. Once Ally comes home we will be in close contact with Dr. Katz and the GI doctors to help us manage Ally's feeds. She will also be followed by pulmonologists and they will determine her ventilator settings.

Having Ally home will be a lot of work and will take a lot of adjustment. She does not need to make a lot of progress to come home, but she needs to be making forward progress. So that's what we will pray for, slow steady progress!

I thought I should write a little update even though there has not been much news. Ally was without feeds through the weekend. Yesterday they started her on some pedialyte and she tolerated it well. Later today they will start her on half strength formula at 4cc/hour.

We have a meeting with Dr. Katz tomorrow. We have still been very pleased with her approach to manging Ally's feeds. However, it seems like her instructions are not always being properly carried out. We plan to discuss with her what can be done to eliminate some of these problems. We also plan on asking where Ally needs to be to get out of the hospital in the next month or so.

It was so nice to visit at Bryn Mawr this weekend we miss everyone and send a "hello" to all the people we didn't get to see. Visiting there made it even harder to come to duPont especially since we have not been that happy here lately. Shane and I often doubt our decision of having Ally transferred to duPont. We wonder if her feeds would be going more smoothly if she were still at Bryn Mawr with the people who know her best. We at least know that Dr. Katz's orders would be followed. Sometimes there are too many cooks in the kitchen at duPont. But, what's done is done and now we will make the best of the situation.

I will update again towards the end of the week. I'm sorry I spent this update complaining, but the last week or so has been rough. I think we are getting fed up with being patient and want to do whatever needs to be done to be able to get Ally home, and SOON!!!

Well, not the best day but I guess it could always be worse. Ally had a fever during the night and also was having some difficulties breathing. So, they started antibiotics and had to put Ally back on a regular ventilator.

The fever we think might be from a urinary tract infection. She had a catheter in to measure her unrine output and therefore got an infection. She seemed happy today and her vital signs had been stable. We were a little concerned because her belly appears larger and her feeds had been stopped yesterday.

Hopefully we will get through the weekend with no other set backs. This wasn't a major set back but, we were still a little dissappointed. They will possibly restart feeds this weekend and will be trying a different formula.

Ally is having a pretty good week, but we did have to back off on her feeds a little. She is currently getting about 20cc of formula per hour. She seems to be tolerating and absorbing this amount of formula.

Everything else is about the same. Her 4th tooth has not come in yet, but she is very busy chewing on her fingers. She has been busy with occupational and physical therapy this week. At the present time she is having a hearing test and is a little sedated so the test could be performed accurately. This is giving me some time to call some nursing agencies and check which ones we like best.

We will update around the end of the weekend.

PS: Big sister Ashley is getting her first haircut tonight over at the Ronald McDonald House!

Sorry it has been so long since the last update but, no news means good news. Ally had another good week and is currently getting 26cc of formula per hour. This means she is receiving about half her calories by formula. Ally is also on a home style ventilator and has been doing wonderfully since she went on that about a week ago.

Over the weekend Ally was having problems absorbing her formula which led to a lot of messy diapers and a very sore bottom. However, today she had a normal amount of dirty diapers and her bottom is slowly getting better.

Shane and I are mastering trach care and suctioning. Tomorrow we have another training session and also a family meeting. During the meeting we are hoping to get an idea on a date by which Ally might be able to come home! Today the social worker gave us the names of a couple of home nursing agencies and home healthcare equipment suppliers. So, the next couple of days I will be spending on the phone checking them out.

I promise I will update at the end of the week. Take care thanks for all the well wishes!

Just a quick update. No major changes so far this week. Ally is still doing great! She was a little unhappy last night because she had to get some immunizations, but today she was back to being happy.

She is currently getting 20cc/hour of pregestemil formula. I know she told you in the last update that her formula is very yummy, but I think she was joking because it smells absolutely awful!

Everything else is going good. Shane and I have some more training later today. This morning I got to help the nurse do Ally's trach care and then I got a chance to suction her all by myself. The more I get to help the better I feel because I think Ally prefers having the people she knows the best take care of her.

I will update again soon. Oh by the way Ally just got her 3rd tooth the other day and I think the 4th one is coming soon!

Well, I hope everyone is happy, I behaved myself for a whole week. I didn't take any backward steps they were all forward steps. Mommy and Daddy said to "knock on wood" so I don't jinx myself!

I know you won't believe this but I'm getting 14cc/hour of progestemil formula. Yummy yummy, everyone should try this stuff, talk about good food!!! I'm still on my TPN (IV fluid) diet and the docs have cut me back even more since I'm doing such a good job with my formula.

Dr. Katz, my favorite surgeon, came by to see me twice today. She was very happy with the progress I've made this week. She was especially excited about what I had in my diaper. I'm getting the hang of this pooping and eating thing and I know that makes everyone happy.

Mommy and Daddy are really proud of me, but they understand that the next weeks may not go as well. It's still tough for me to take forward steps, sometimes the backward steps are just easier to take. So, don't be surprised if I don't have some good days and some bad days this week. But, then you never know I can be a good girl when I want to be!

Hope everyone liked the new pictures. I really like the two pictures of Ashley and Rondald Mcdonald. My big sister is so funny! Mommy said it's time for bed, but she or I will talk to you soon! Keep saying your prayers I really do think that's what makes me better.

Fantastic, that is the word I choose to describe the past three days. Ally has been wonderful!!! Today she smiled so much that her plump little cheeks are probably sore. She had her first trach change today and I think that she is happier now because she can move her head so easily.

Currently she is being fed at 6cc/hour. She has not had any major vomitting since Sunday. The plan is to increase her feeds by 2cc every twelve hours. Sometime during the night she will go up to 8cc/hour.

The trach training went well on Monday and we have another session coming up on Tuesday. Today we had a meeting with Ally's primary doctor and nurse. We discussed the process of getting Ally home and some of the care she will need at home. This is an extremely long process which is why we began discussing it now. We still have no idea how long Ally will be here at DuPont.

Tomorrow Ally has appointments with physical occupational and speech therapists. The doctors may also try her on a different ventilator, which is designed for at home use.

Ally has been doing pretty well since the last update. That late night on Thursday must have done her in because she slept the whole day on Friday. Luckily she woke up for us a little on Saturday morning, before we left for the mountains.

Saturdady afternoon they had started feeds, but had to stop around midnight because Ally had vomitted a couple of times. Eventually she'll get that gagging and spitting under control it will just be a slow process, but we know all about going slow! Apparently Dr. Murphy saw her this morning and thought she was ready to try again. So, they restarted the feeds. She spit twice why we were visiting. Hopefully, she'll do well tonight and just sleep.

I almost forgot to say that the upper GI looked fine, which is why the doctors had decided to go ahead with feeding. Shane and I start our training tomorrow, to learn how to care for Ally's trach. I will update again around mid-week, unless there is any major news before that time.

Hi everyone, it's late at night but I'm still awake. My mommy just called to check on me and my nurse tattled and told her I was still up! Mommy said that since I had so much energy I should write the update. I think my updates are funnier than my mommy's updates.

I had a fantastic day today! My day shift nurse, Barbara, took care of me and we are really getting to know each other (she's really nice). I felt very good all day and the docs have even been skimping on my pain meds. My mommy and Ashley came to visit me this morning. I think my big sis is really starting to like me. She even held my hand.

I was awake and napped for long periods of time today, which showed everyone how I am so much more comfortable. When I was awake I was very happy and busy playing, especially with my big fish balloon. I love that balloon! I was able to move so much easier and I must say I look pretty good without that ET tube. I was also busy smiling at the nurses and melting their hearts!

Tomorrow I have to go for an upper GI, which I'm not all that happy about. However, if everything looks good the docs are gonna start to give me some food again.

You won't believe this but, I just heard that my mommy and daddy are actually going to go away for a full 24hrs!!! They are taking my sister to the mountains. I will try my best to behave while they are gone, but you know how I like to keep them on their toes! If anyone was planning to visit, they are leaving Saturday morning and will be back to see me by late Sunday afternoon.

Mommy and Daddy will update again soon. I think they might even bring their camera and get some new pictures of me!

What a good way to start off the month, Ally was finally able to go to the OR today!!! She did very well and came out with a trach and a new central line. It is so nice to see the ET tube gone and all the tape off her face. Her little lips look cuter than ever.

They didn't take her until around 12:30 p.m., but she was already done around 2:30. She required no blood during the procedure and was able to maintain all of her vital signs. After she was back in the PICU she began moving and opening her eyes, so they gave her some more meds to keep her sedated and comfortable.

Today was a big step in helping us to get Ally better and to help get her home. Hopefully, the night will go as well as the day has gone. Talk to everyone soon thanks for the prayers!

Today was a good day. Ally was awake for longer periods of time on and off today. The latest blood culture is negative (yeah!!!) Therefore, Ally is supposed to go to the OR tomorrow around ten o'clock.

The plan is to start with a bronchoscopy, which allows the doctors to thoroughly check Ally's airway and lungs. The ENT doctor already told us that he will more than likely choose to do a tracheotomy with what he expects to find during the bronchoscopy.

After all that is complete another doctor will be placing a new central line. Even though Ally's latest culture was negative, she has now had two infections in this line, and it also has been in place since the day after she was born. That is a very long time for a central line to stay in place. Thanks to the nurses at Bryn Mawr, since they are the reason the line lasted so long!!!

We will update tomorrow afternoon. Ally is scheduled to be in the OR for about 3hours.

Ally had a pretty good day today, but she unfortunately was not able to make it to the OR. She was scheduled to go around 11:30 and shortly before that time a blood culture that was pending came back positive for a staph infection. The infection is in her central line. Another antibiotic was started to try to clear up the infection. A repeat blood culture was done today and if that is still positive tomorrow the surgeons will probably want to pull her line and place a new central line.

Once again everything with the trach is on hold until this infection is cleared. The doctors are hoping to go to the OR late this week, but we will see. Ally was not showing any clinical signs of the infection, which is good. She was awake a couple of times today and she loves her big fish balloon, thanks Aunt Jeanne!

We will update as soon as we have some news.

Hi everyone, Mommy and Daddy said that I should send the message this time, so here goes. I've been feeling much better the past couple of days the medicine is helping, but the prayers are what really make me better.

The word around this place is that I'm probably going to the OR tomorrow. I'll be an add on to the schedule so it will probably be tomorrow afternoon. I won't be feeling that well so my mommy will send an update tomorrow evening.

I'm getting to know some of my new nurses and I have about a thousand doctors. The doctors were nice enough to let me wake up a little. Since Friday afternoon I've been opening my eyes and trying to move a little. I got rid of all that extra fluid that I had, thanks to my favorite medication, Lasix. Now I'm back to my normal trim size!

Thank you to all my visitors this weekend. It was nice for some of my Bryn Mawr family to come and visit. For a little while it felt like I was back at my old place. Take care everyone and thanks for everything you are doing for my family. Look for mommy's update tomorrow night.

Love, Ally

P.S. A special thank you to Andrea and her family
and friend. Those special Padre Pio prayers
will help me tomorrow when I'm in the OR!!!

Ally had a much better day today. Yesterday I would have to classify as one of her worst days yet, we were taking it hour by hour. The doctors seem to have her ventilating better today and overall her vital signs have been more stable. It will be at least a week until she is healthy enough to go to surgery for the trach. She is currently being treated for a bacterial pneumonia. She had a couple of blood transfusions and numerous meds to help keep her stable. Please pray,pray,pray, yesterday was very scary for us and thankfully she was better today. We will keep everyone posted. We miss everyone at Bryn Mawr.

No tracheotomy today, possibly later this week. The doctors are having difficulties ventilating Ally and would like her to be a little more stable with respiratory when going into the OR.

We will keep you all posted. If we do not update in the next 24hrs. that means no changes and no surgery.

Ally did not have any procedures done yesterday. Mainly because of a lack of OR time, but also because she had spiked a temp on Sunday a.m. She is supposed to go to the OR today around noon. We will update later today .

We are currently staying, at least for the next couple of days, at the Ronald McDonald House. If you would like to get in touch with us you can call us here at 302-656-4847 ext.207 or room 207. You can leave a message on our phone.

Thanks for the prayers!

Ally is now all moved in to her very own room at the PICU at DuPont Hospital. Nurse Karen from Bryn Mawr surprised us early with a welcoming visit. It meant so much to Jill and I to see her there. Karen once again, saved our day, by looking over us and making sure all the staff at DuPont came familar with Ally's case and answered any questions they might have.

Allys tracheostomy surgery is schedule for sometime this afternoon. I will update how things went later tonight.

Anyone who would like to visit Ally, please feel free to stop by. We are allowed 2 people by the bedside, and no children under age of 12.

We especially, look forward to the days when more of our Bryn Mawr family can stop by to say hello, and give Ally a kiss :)

I don't even know were to begin with Ally's most recent developments. Yesterday we were informed by the ENT specialist that it would be in Ally's best interest to be transported to DuPont. This will be happening Sunday morning. The reason for the transport is because Monday afternoon Ally will have a tracheostomy.

A tracheostomy is a surgical procedure where the trachea is brought up to the skin and a breathing tube is placed directly into the trachea through the neck. This is not a permanent procedure, but we were told it could be in place up to about 18 months. This will help to prevent gagging and vomitting caused by the ET tube.

This has all developed very quickly and has not only been a shock to us, but also to the staff here at Bryn Mawr. We are very sad to leave Bryn Mawr not only because Ally has received such fantastic care here, but because the staff has become our second family.

We will never forget all the people that have touched our lives in the past six and a half months. Especially the nursing staff which has played with, held, and cared for Ally like she was their own child. The staff has given us hope and kept us sane during this most difficult time in our lives. They have laughed and cried with us and most importantly have always helped us do what is best for Ally. Thank You.

To everyone else, we will now be taking you all up on your offers to help us!! The next couple of days will be a big transition and very busy, but we will keep you informed. Keep praying and Ally will eventually be a healthy little girl!

This week has not been the best, but then it could have been worse. Ally has been doing okay with feedings and is up to 6cc/hour. She is spitting up quite a bit, however she is still intubated so some times the tube gags her and causes her to spit up.

Once again Ally's major issues this week have been respiratory. The doctors tried to extubate Ally on Wednesday, but she was not able to oxygenate well enough off the ventilator and on CPAP. Therefore, they had to reintubate her about 45minutes later.

An ENT specialist form DuPont will be seeing Ally later today to determine if there has been some kind of damage to her airway that is preventing her from breathing on her own. After the consult hopefully they can determine when they might try her off the ventilator again.

Ally tried to be helpful early this morning by extubating herself The doctors tried to leave her off the ventilator, but she did not succeed. After giving her some sedation medication they reintubated her. Now she is resting peacefully and I will probably spend the day watching her sleep!

The weekend went well and Ally even started to be fed. The feedings were just started last night and ran continuously through the night. The plan right now is just to feed her at night when she is sleeping and seems to digest easier. She was started at 2cc/hour, which is about a half a teaspoon.

As far as respiratory goes, Ally is stable and still on the ventilator. We are hoping to get her off the vent around mid-week. She has been having a couple of doses of Lasix a day and that seems to be helping her respiratory status.

Jeanne, we just heard the good news can't wait to see you next week! Karen we hope your feeling okay and we will see you soon too.