Ally Heintz

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!

Sorry for the delay in this e-mail update, we had hoped to send an update earlier in the week, however, Ally was keeping us too busy.. The week started out okay with Ally doing well with her feedings. On Monday when her surgeon saw her she was very optimistic and pleased with Ally's feeding progress.

Unfortunately, Ally started with a fever late Tuesday night continuing into Wednesday. On Wednesday Ally ran a temperature between 104 and 105 the majority of the day, and we got it down to 103 by Wednesday night. Thursday her temp never went over 101. Along with the temperature came numerous blood and urine cultures. Ally had a Staph infection in her broviac central line, bacteria in her urine and also a yeast infection. She was started on numerous antibiotics again and as of today the infections seem to be under control. It is actually amazing that Ally has gone this long without an infection in her central line and we of course attribute this to the superb care that she has been receiving.

As of Thursday night Ally had made it to 8cc. of formula per hour, which was astounding progress. Also that night Ally received yet another blood transfusion and later had difficulty breathing and was put on a nasal canula to assist her with her breathing. Unfortunately, when I arrived at the hospital Friday morning I was informed of some more complications. Ally's fistula was having a considerable amount of drainage and we resorted to an ostomy bag to keep the area clean and prevent her skin from breaking down . On Saturday Ally's feedings were stopped and she was placed on a medication again that should help to close the fistula. Today was pretty uneventful and Ally seemed to be getting some of personality back.

Tomorrow we hope to meet with Ally's surgeon and come up with a plan to heal the fistula and to not restart feeds until we feel that the fistula is completely healed. Hope to update you again in the middle of the week.

Needless to say our holiday weekend did not start off too well. Friday, Ally's bowel formed another fistula (hole). This time Ally's belly opened while Jill was holding her. After Ally's bowl released all the fluid, she was very relieved and happy. We waited for the surgeon to arrive to have a look. Dr. Dunn cleaned Ally's wound, and said that for now we would wait for it to heal, and that we were not going to feed for at least another 2 weeks anyway. Back to the waiting and healing game.

Well, it looks like Ally will not be able to feed for least another 2 weeks. Surgeons say that even though the barium passed through Ally's bowel on 5/26 faster than before the STEP procedure, it still is just sitting in the bowel, taking longer for her to pass it. This is because during the STEP procedure, surgeons made the bowel smaller than usual (1cm in diameter), knowing then it will dilate somewhat back to a more normal size. This will give the bowel better motility when she does feed.

To top it all off, Ally has a bacteria overgrowth in her bowel. She is currently receiving antibiotics for that now. She also has been retaining more fluid, possibly from the barium sitting in her bowel, backing things up. And finally last night she was running a 102 fever. Hopefully this is not a sign of infection.

Sorry for the delay with the update. As you can imagine, Jill and I are very busy. Ally has had an up and down week these last 7 days.

The Good News: Ally's fistula (hole) in her bowel has closed on its own. Her belly is healing nicely, and she continues to be very happy. Yesterday, Ally had another upper GI test with barium to check for any more blockages. The barium moved through the bowel to the rectum just as it should.

The Not So Good News: Even though Ally's test with the upper GI shows that the bowel is moving the barium through, Ally continues to struggle with her own stomach secretions. Meaning she has been throwing up more than we want. As the week has progressed, Ally has been getting a little better. I think the surgeons are going to forge forward with feeding, and see how much Ally can handle. Check back later next week, for hopefully an update on feeding.

Ally's surgeon was in today to see her, and gave her an upper GI test. This test, tracks barium through the intestine checking for any holes, and most importantly the amount of time it takes Ally to pass the barium.

The Good News: It took Ally about 4hrs. to pass the barium. The bowel is now able to move food along faster, meaning the STEP procedure was a success.

The Bad News: Ally does have a small fistula (hole) in her bowel. The surgeon said that she will not be able to feed Ally until the hole is closed. The procedure to close the hole, hopefully won't be to big of a deal. Look for an update on this later in the week.

After the STEP Procedure

Ally's 87th day in the hospital started very well with Ally pleasantly awake, cooing and smiling at mommy and daddy. We took this as a good sign that she would now be on her way to better days. Shortly after our early morning visit with Ally we sent her off to surgery. This was of course not an easy task and each surgery has become more heart wrenching for all of us.

Surgery was slightly delayed and didn't get under way until about 10am. Somewhere around 3pm Ally's surgeon, the wonderful Dr. Katz, came to let us know how things had gone. She seemed pleased with the outcomes of the surgery and said overall she thought things went a little better than she had expected. Ally did have some issues with blood loss and received some blood during the procedure and after.

At the end of Ally's 2nd surgery she had approximately 56cm of small bowel. At the beginning of today's surgery her bowel measured approximately 69cm. Meaning Ally had 13cm of growth over the last 8 weeks. After surgery today her bowel approximately measured 81cm. Showing that the procedure not only narrowed her bowel but also lengthened it another 12cm. Finally, Dr. Katz was able to completely close Ally's abdomen and no stoma was necessary.

We are extremely grateful for everyday we get to spend with Ally and are especially grateful that she made it through yet another surgery with no major complications. Thank you to everyone for their prayers and please continue to pray for Ally's bowel to function normally. Also, we want to thank all the staff at Bryn Mawr that have cared for Ally and will continue to help her on her way to health.

After 82 days, and 2 surgeries, Ally is about to have her 3rd surgery on May 3rd. The surgery would be the first ever performed by Dupont Hospital. The STEP procedure (Serial transverse enteroplasty) was first introduced back in 2002 on a baby boy with similar issues as Ally. That surgery was successful.

Ally's current issue, is that her bowel has become dilated. When this happens the bowel loses its ability to perform peristalsis, the contractions that move food through the digestive tract. The STEP Procedure will make the bowel smaller in diameter, and at the same time lengthens the bowel (which Ally needs, since her last surgery they had to remove some of her bowel due to blockage). Doctors expect at least a 7 day recovery period, before they would try to feed Ally via a feeding tube.

If not for such a strong and supportive family, and a wife who I love and could not get through all this without, these days would be longer and more difficult to deal with.

Jill and I both have great parents. They have spent every evening of all 12 weeks, rocking, comforting and giving all the love grandparents can give to help Ally through the night. They have done so much for us, that I'm not sure how we can ever pay them back.

Also, let me not forget our friends. Your prayers, thoughts and support are very much appreciated by Jill, Ashley, Ally and I. It helps to know that you are not going alone at this and you are there if we need you. So, Jill and I consider you part of our family. —Thank You.