Ally Heintz

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.

Ally has had a very nice and stable week. She is still on the ventilator, hopefully coming off over the weekend and back on the nasal CPAP. For the majority of the week Ally was happy and alert and kept to a good schedule of being awake and sleeping at night.

The other plan for Ally is to possibly start feeds this weekend. This of course will depend on her respiratory status. Today I got to hold her for the first time since Saturday, so that was a nice treat for she and I. We will update sometime over the weekend!

Nurse Karen, Ally told me to tell you to feel better, we are all concerned about you. We hope to see you next week.

As usual the last couple of days have been up and down. Ally had good days on Friday and Saturday and then ran in to some problems on Sunday. Thankfully nothing as serious as her episode on Thursday.

Unfortunately, Ally began to have breathing difficulties on Sunday morning. They tried to keep her on her nasal canula and place her under a cool mist hood. Ally decided she didn't like that and became rather spastic. Once we finally had her calmed down she was placed back on CPAP.

Ally's respiratory state grew worse as the day progressed and in general she looked awful. I decided it was best to spend the night at the hospital again. Around 2am Ally's nurse woke me to inform me that Ally had to be put back on the ventilator.

Obviously, being reintubated is extremely uncomfortable, but I could see Ally relax as soon as she was back on the ventilator and breathing comfortably. She even opened her eyes and smiled to let me know she felt better.

Ally's surgeons are pleased with her GI status and may plan to feed her closer to the end of the week if she is stable with respiratory. The upper GI and barium enema were cancelled due to Ally's respiratory status. The surgeons also feel that since Ally is stable with her GI issues, she may no longer need these tests.

We will update again soon. Nurse Karen if you are reading this we hope you feel better and we hope Ally isn't the one who made you sick!

Well I guess we can add today to the list of bad days. Ally gave everyone a big scare today, but by the end of the afternoon she was back to her happy self!

Around 8:30 this morning Ally was sleeping when an alarm on her monitor started to ring off. Luckily, Ally's nurse was sitting by her crib and she was rather surprised when she turned around and saw Ally's heart rate had taken a drastic dip.

She immediately went to try to stimulate Ally by shaking her a little, but when she did not respond she had to begin CPR. Ally came around after only about a minute, but it was enough time to scare everyone. She spent the rest of the day having numerous tests and lab work, but so far we haven't found the reason for this episode.

The cardiologist thought it best to discontinue the one medication Ally was on because in an extremely small percentage of people it can cause heart arythmias. She also had her abdominal ultrasound completed today and everything looked okay there.

So once again Ally is the medical mystery that we are beginning to think she likes to be! A big bright spot to the day was that we got to hold Ally today for the first time in two weeks. She of course enjoyed every minute of this and we can't wait to hold her again.

This wasn't the kind of day we had hoped for, but we are so grateful that Ally was okay at the end of the day. We now are even more in debited to her angel, nurse Karen. Thank you

Today was a good day, Ally finally came off the ventilator. She currently is on nasal CPAP, which is pressurized oxygen administered through prongs in her nose. Obviously this isn't the most comfortable thing for her, but she is tolerating it pretty well and it definitely beats the ventilator!

As far ar her GI situation goes we are still on a wait and see basis. Since last Thursday she has had no unusual drainge from the drain or the wound area. This of course is great news, but does not explain the unusual drainage she had.

On Friday Ally will be having a repeat ultrasound of her abdomen. The doctors will compare this to the one from last Thursday. Basically they are looking to see if there is a collection of fluid anywhere in her abdominal cavity.

Then on Monday they are planning to do an upper GI or a barium enema. If they see no leakage or no fistula they will start feeding her. If they see leakage or a fistula they will need to decide if it needs to be addressed imedaitely with surgery or if we can wait until Ally is healthier.

For now Ally will be staying here at Bryn Mawr, which we are very happy about. Her surgeon and the developmental specialist thought it best for her to stay put for now. They are planning to move Ally to a semi private room located here in the NICU.

Sorry this update came so late, last week was extremely difficult and we just felt wiped out. This week has been better and any day that is a good day is a day we treasure!

Well, not sure where to begin. Yesterday was a tough day for all of us, including the doctors and nurses. We found out that Ally is developing another fistula from her bowel surgery which has been the cause of her high fevers.

At this point, I'm not sure how not to feel a sense of defeat.

I guess these next few days, we will develop a plan on what the next steps are. Some of the ways we are going to combat this fistula are using meds, and putting Ally to NG suction. Both these tactics will hopfully help keep fluid away from the fistula promoting healing and closure. We are also going to cycle her TPN off for 12hrs. then back on 12hrs. giving her liver time off from being exposed to the TPN fluid.

Ally also is still on 30% oxygen, and needs a lot of suctioning to help clear her lungs. She continues to fight and stay strong just as she has in the past.

Ally is having a much better day today. Yesterday when we arrived back at the hospital, after spending the night, we found Ally in the middle of a seizure. This was more than likely just due to her high fever, which again was around 103 degrees. A brain ultrasound was done and everything looked okay.

We still aren't sure why Ally is running a fever, all her cultures have been negative. Ally's respiratory state has been stable today and in general she seems comfortable. Ally also had an abdominal ultasound to make sure there was no leakage where her bowel was cut. This would be something that would cause a fever, but again everything looked okay.

We are hopeful that Ally has gotten over the hump and that each day will be a little easier for her. Thanks everyone for all your support.

Ally has had a difficult weekend and the recovery road is not going as smoothly as we had hoped it would. For the majority of Friday and Saturday Ally had been doing pretty well. But, yesterday Ally needed a nurse by her bedside the whole day.

Most of her complications seem to be respiratory related and she started a fever yesterday. A blood culture was sent to the lab to help us determine the cause of the fever. Her surgeon was in and is optomistic that it is not an infection in the bowel, but we can't be clear on that until the culture is back.

Late last night and early this morning Ally was extubated from the ventilator because she was not breathing well enough on it. Ally was then reintubated with a larger tube that seems to be helping her breathe a little easier.

It has been a very long weekend and we have spent the majority of it by Ally's bedside, including staying with her overnight. We have shipped Ashley off to the beach with her grandparents for a couple of days. This way we can focus on Ally for now. Thank you all for the wonderful words of encouragement that you have given us. Keep Ally in your prayers!

We will try to update again soon.

Ally made out well with her surgery, however, it did take a little longer than expected and therefore they were not able to place a gastrostomy tube. The tube placement was a secondary procedure to the primary procedure of removing the fistula.

Once they were able to get to the fistula it was just a matter of removing that section of bowel. However, it did take approxiamtely an hour and a half to get into the abdomen to remove the fistula. They were not able to see the stomach from the incision line and therefore, chose not to extend the suture line to access the stomach for a g-tube.

We were a little disappointed that the g-tube was not placed, but in the grand scheme of things that is a very minor thing. All in all things went well. Ally did not require any additional blood or fluid during surgery and that shows us that she should probably be able to recover easier.

Thank you all for thinking of us and especially for praying for Ally. We will update again soon. Now start praying for a speedy recovery.

Hope you all are enjoying the new site with lots of pictures! Ally has a lot of news since our last e-mail update.

The fistula feeding tube was not working out and the tube had actually fallen out twice this past week. After numerous attempts we realize this method of feeding and treating the fistula will not work.

This leads us with really only one option, which is to send Ally back to the OR for more surgery. Her next surgery is scheduled for Fri.7-23. During the surgery Ally will have approx. 3cm of bowel removed, where the fistula is present. She will also have a gastrostomy tube placed, which is a feeding tube inserted directly into the stomach.

Removing the fistula is the main reason for the surgery, but we feel the g-tube will help a great deal with Ally's feedings after her surgery. Plus it means no more nasal tubes!!!

This surgery should not be as extensive of a procedure as her last surgery. Hopefully, that will mean a shorter recovery time. We will probably not be updating the site again until after surgery. We will let you know how Ally is doing after surgery and in the meantime don't forget to sign the guest book and send Ally a message. She loves getting e-mails!

This past week was a good week for Ally. On Monday we spoke with Ally's surgeon,Dr. Katz, at length about what Ally's options were as far as feedings went. After speaking with her she informed us that it was imperative for Ally to begin feeding again as soon as possible, mostly to prevent any further damage to her liver caused by the IV fluids. So we came up with a plan and on Tuesday Ally went to radiology and had a catheter put in to her bowel through the fistula. This is basically like a feeding tube in the stomach would be, but it goes directly to her bowel.

Ally has been tolerating her feeds fairly well this week and has been having her feeds increased daily. Once they had the fistula tube established they also began feeding her through her NG tube again. Currently she is up to about 13cc/hour total between the NG and fistula tubes. The major downfall to Ally being fed through her fistula is that it commits us to another surgery because the fistula will never close with the tube in it. Dr. Katz's plan is to get Ally up to half of her calorie intake through her NG and fistula tubes. Once she is tolerating the feeds at that level, she may be able to come home. Then we would get to have her at home for a couple of months and then she would go to DuPont for a surgery to remove the fistula and a small section of her bowel.

Ally going to DuPont will make it more difficult for us travel wise but it will be good for Ally to be in a pediatric ICU as opposed to a NICU. This is all still probably a long ways off, but the thought of Ally coming home for some of this time gives us something very positive to look forward to.

Otherwise it was a stable week and we of course celebrated the 4th at the hospital. Big sis Ashley even came to visit and the girls wore matching patriotic outfits. Ally is going to radiology again tomorrow to have the current catheter in the fistula removed and a larger one placed. This is due to the fact that Ally is still having a considerable amount of drainage out of the fistula around the tube. To keep the drainage under control she wears an ostomy bag which prevents her skin from being irritated. Hopefully a larger catheter can minimize the drainage out of the fistula. Just to let you know this procedure is in no way painful for Ally, in fact I think she enjoys going to radiology because they keep it so cold there and Ally is a hot tamale Last week she spent the majority of the time smiling and talking to the radiologists, it's like a field trip for her!