Ally Heintz » July 2008 Journal Entries » AboutMyBaby - online baby scrapbooks, photo albums, videos, birth and pregnancy announcements

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Thu, Jul 31, 2008 10:50 PM
I'm glad so many of you enjoyed the last update. Having great news is always exciting to post!

This week started out being very rough, but as of now Ally and I are getting by just fine here in Pittsburgh. The week had its bumps here and there, but in general turned out to be some great times with Ally and I. We had lots of playtime, watched movies, had fun running the halls chasing Dr. Kyle with a squirt gun, and at the same time Daddy was sure to keep up with his full time work at Vanguard via his computer.

I know some of you think that Mom is the only one that can care for Ally and all her needs, but that is just not the case. I too have been along this 4 year ride of hospitals stays, battling with balancing work, Ally's health issues, being the best father to Ally and Ashley that time would allow, and also the best husband I could be to JIll. Allot to balance, which in turn created many nights of me wondering if what I was doing was right for our family. I often wonder if many of the folks who read this site could even begin to imagine what life is like having to deal with all of these issues year after year? Issues I know that will never go away completely, but hope they lesson as time passes.

At the end of the day, I still don't know if all I did was right for our family. Some of you feel I may have done wrong, and if you thought that, then you should of spoke up. It always easy to be a back seat driver, or see things in hindsight. As far as I see our future, it will always have its challenges. I as well as Jill are well equipped and ready to face each and every obstacle life throws our way!!

I am extremely proud of what all of us as a family have overcome. I am forever grateful for all the love and care Jill has provided our girls while I was away working. With everyday that God allows Jill and I to be parents, I am amazed at how strong both our little girls have become!! Also, let us not forget to remember the 4 people JIll and I could not do without . . .our parents!! I can not tell you how much our parents have contributed to getting us to this point in Ally's recovery. All four of them have been our Angels to JIll and myself!

I guess the reason to write what I am writing is to give you my last final view of a Dad who was in crisis, who is now praying from this week forward some things will finally end, and new lives will begin. I so look forward to all the challenges GOD has in store for our family! Good or bad, we can get through them!

Thank you to all of our friends for your continued support. Thanks to all of the nurses, doctors, and medical staff for your unbelievable talents for caring and healing Ally. Thank you to all of my friends back at Vanguard for your continued love, support, and everyday worry of my family and myself! Everything you all have contributed has finally given us the chance to be a family!

Thanks, Shane

Comments:
Emberly: Shane I am so very proud of you. I have never met anyone who has been so committed to your family. You and Jill have a strength together that many will never know. You have both worked so very hard and have endured so very much and you both have two beautiful daughters. You are a family! You are never alone - god is with you.

steph: I am so glad to hear the good news. The first thing I thought was that the trip to pgh was worth the news of being told the endocarditis was gone.. maybe that was the reason for her fevers! Just to give you good news and to hang out one on one with your sweet little girl.

DOnt ever questions what you have done for teh past year. We always do our best and do what we think is right. we always got questioned too on some of our actions, or nates actions, but again like you said, we do what we feel is right. Noone is in your shoes. YOu obviously did right because you are still fighting as a family and are now on a new road at being a healthier family. YOu two are amazing parents... many couldnt do what you have done. ANd take it from nate and I that if you have gotten through all of this, everything else is a piece of cake. Many will NEVER know how to deal with all of these obstacles the rest of their lives... Hopefully none of us will have to deal with them again either!
Take care. We need to get together and meet the girls... out of the city! Prayers are always with you

Kathy Buck: Shane and Jill, I have been and will continue to be praying for Ally and your family. God has brought you on a long journey, and I praise God for all he has done for Ally and bringing her this far.

Carol Yeager: I am so very.very glad that things are starting to get back on track for all of you.God willingly that they will continue to getting better each and every day.GOD BLESS

Johanna: You and your entire family have been amazing and inspirational to all of us who have been privileged to know you! I honestly don't know how you could have done anything better. I know Ally could not have had more devoted parents and family and both of your girls are so amazing because of you. Continue to be awesome!

Cheryl: Shane,
You have no idea how I brag about the many strengths that both you and Jill possess. If I turn out to be half the mother Jill is and Jerry turns out to be half the father you are, our baby will be very lucky. In 20 years of neonatal/pediatric nursing, I have never encountered a couple as strong as the two of you. You two work as a well oiled machine in regards to juggling schedules, taking care of each other and doing what is best for the girls.Never doubt your parenting abilities because in my book you deserve father of the century. I have witnessed you taking care of Ally during the not so good times and you are completely capable. What is so nice to see is a couple that takes such good care of each other. That is why Ashley and Ally are doing so well. I have seen others try to deal with sick children and they don't have the support of a loving relationship and it wears them down tremendously. It's so nice that you can now focus on a brighter future with less trials and tribulations. I didn't say no trials and tribulations for that would be unrealistic but getting your family back to home base will be a great start and a new beginning for all of you.
Miss you all and pray for you daily,
Cheryl

Agapegirl: Shane, as I read your update it brings tears to my eyes. I do not know you, have never met you but I have been praying for all of you since I first learned of your situation. I personally think you are amazing, I Praise God the Ally has had a father, mother and sister as she does not to mention the doctors and medical staff. Jesus said he would be with us always and as he ascended into heaven He promised a comforter, He went to prepare our REAL home, but while we are here in this life we must do our best along with His love, help and guidance. And you my friend and your wife have done a super job of taking care of your children. I am so glad and filled with joy with your good news and I pray for Ally's healing as well as praying for all of you as a family and as individuals. It is so wonderful to be able to take our problems to the cross and KNOW there is an answer for us and that every tribulation we go through (and I do think that you and your family have had more than your share) nevertheless Christ is always with us. Know that you are loved and prayed for and I do not believe anyone has the right to second guess either your or Jill, I think you both are wonderful and Praise God for you, may God continue to improve Ally's health and give you all the strength needed to make it through the storm, I look for a rainbow and Ally's total healing! God bless you, with love your sister in Christ. Sandy Kerr

Jen Harmer: It is so great to hear of your wonderful news! I am so happy for all of you! Ally and Ashley are so lucky to have such great parents.

Shari Widlund: I think you are a wonderful father Shane. You and Jill are two of the strongest and most loving people I have ever known. I think you have done wonderfully caring for Ally. It is a team effort...Jill could not do it without you, and you could not do it without her. Ally and Ashley are very blessed to have the two of you for parents, and Ashley as a sister. God Bless you and your precious family.

The Bollingers: You are "GREAT" parents and without going through what you have gone through, NO ONE can judge how you are doing. You have two happy, fun-loving children and that is because of YOU. You are doing a great job. We are happy to hear Ally is doing better. It is good that you and Ally had some Daddy-Daughter time together. You both needed that. Our thoughts and prayers are with you! God Bless!!!

Ken and Becki: You have overcome so much as a family, more than a lot of people will have to overcome. We can't put into words how glad we are for this relief for you and Jill, this burden lifted. Take a deep breath and enjoy your new life together. And you're right that you can get through all of life's challenges "through Christ who strengthens you" (Phil. 4:13).

Love: We are SOOOOO Proud of you!!!

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Tue, Jul 29, 2008 9:20 PM
I guess you can't complain when you get three updates in one day, right? Well this update, is the best of the three!!!

Tonight I get to tell you about the small miracle that has been given to Ally and our family!

Today Ally had an echo of her heart, and CT scan of her chest. Early there was some worry that with having endocarditis and other breathing issues, that maybe a small blood clot leaked out into Ally's lungs. After reviewing the scan, the results were negative, no clot. That though is not the miracle but still an awesome result.

The miracle is that after further reviewing Ally's latest echo, it seems that the large area of endocarditis in her heart has completely gone away!!!!! To even write it brings tears to my eyes. Tears of complete joy, relief, and knowing that finally Ally got the huge break she needed. A break I have prayed for every night since knowing about the infection. I can't even describe the amount of relief this has brought to my mind. For our family it means we can start thinking more about staying home and trying to learn to finally live together as a family, all in one place. For Ashley and Ally, it means less hospital stays, and more time to become sisters.

When I heard of all of these results the first thing I thought was all of the effort to get here to PITT was worth just coming to hear those results! I would travel to hell and back, if I knew the results would keep my little girl healthy!

Thank you for all your continued prayers and support. Without you and GOD on our side, my little girl would not keep getting the miracles of life she continues to receive. Ally and Ashley are bound to one day be great women who will no doubt do many great things for others and their own families. As a father I will do everything in my power to ensure my daughters realize and use all of the miracles that have been blessed upon them, and learn to share with others the importance of how precious life and family really are!

Shane

Comments:
Christina Hopkins: Praise the Lord for answering this prayer!!!!!!!!! God is Good isn't He!!! Our prayers will continue for Ally and your family!!
With Love from our family to yours,
Christina Hopkins
and The Christ
Haven Team

Audrey Eddinger: Jill & Shane the new is so wonderful the prayers really to work your family is always in my thoughts and prayers. You guys deserve a break I know Ally will come home and you can start to be a real family. Lots of Love to you all!

Becky Lee: Dear Ally- you are amazing & deserve this miracle more than anyone after all you have been through. May you return home very soon to enjoy more special times with your family!!

the davidheiser's: Glad to hear that Ally is doing better. We couldn't believe all she just went thru, but sooo happy to hear she's getting stronger. Our prayers continue for you all.

Cheryl: Shane, it truly is the miracle Ally is so deserving of. I will continue to pray for you all to be home together soon.
Cheryl

Johanna: Wow! Always full of surprises! I'm so glad for your good news- take care! Johanna

Joely Heidinger: Ally's candle is burning brightly and I thank God for your miracle because I cannot think of a better little girl to get one.

Karen: That is wonderful news! I'm so happy for your family!

The Bollingers: Great news. Prayers have been answered. We continue to pray that Ally keeps getting stronger and that your family be given the strength they need. God Bless You All.

sarah: Praise God, He is so good! Yeah Ally! We continue to pray for Ally and your family, and for more miracles in your lives. Keep leaning on the Lord, He loves you all so much!

Holly Cusumano: What fabulous news. Thanks for sharing it with us.

Pastor & Kathy Pearson: Thanks be to God! Prayers of thanksgiving and for continued healing continue. Pastor & Kathy

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Tue, Jul 29, 2008 12:50 PM
As Jill mentioned in her last update, please take the time today and pray not only for Ally, but also her donor family that made the decision to give our Ally the Gift of Life!

Even though the last 24 hours have been exhausting for all of us, Ally did very well last night on her first helicopter ride from duPont to PITT. After the first 20 minutes into the flight, the hum and vibrations of the helicopter put Ally fast asleep. When we arrived at PITT just after midnight, Ally was admitted to the intermediate ICU. Besides doing well on the flight, once at the hospital, Ally numbers and demeanor were all looking allot better than at duPont. A chest x-ray was done, and at 3 a.m. Ally decided it was time to maybe start thinking about sleeping. That thought crossed my mind many hours before.

After Ally fell asleep, I gathered my work computer, and clothing bag and started my 3 mile hike from the hospital to our apartment on the Southside of Pittsburgh. Not a bad walk, but nothing you want to do at 3 a.m., a ton of baggage, exhausted, and all the while knowing that when you get to the apartment, all you have to sleep on is a floor! Everything in the apartment was cleaned out and the furniture returned, because we thought that after July we may never need the apartment again. Well, here we are a few weeks later and just a few days left to have the apartment and still have not escaped the grips of this town.

So far this morning Ally is doing great. She had an echo of her heart, and has been moved from the IICU to the floor 7 North. The plan for the rest of the day is to get CT scan of her chest. The doctors here think this is just Pneumonia causing ally to be sick, let's pray their right. We really need this endocarditis to disappear!

Jill is planning on working the rest of the week, and will be coming out to Pittsburgh on Thursday night.

Thanks for all the continued well wishes for our family and Ally!!
When we return home, I promise to upload all of the new photos from our week at the shore.

Shane

Comments:
Carol Yeager: OUR prayers are allways with you and your family and Ally is ALLWAYS on my mind and in my heart also.My deepest thoughts go out to you and I wish you all the strength and LOVE that will help you through this.Please continue to have faith and allways look to OUR HEAVENLY FATHER to guide you through this as I am sure he is by your side and will give you the strength that is needed to get through this once again.allways in my thoughts,Carol

nan moyer: My prayers are with you.

phil h: Let's hope and pray for the best

MJ/Angel_Wings: Ally I am so thankful you are better and praying that you continue to improve today. Please know that I am thinking about you and keeping you close in prayer.

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Tue, Jul 29, 2008 2:20 AM
I always find it a little ironic that so many things in Ally's life seem to come full circle. July 28th 2007 we were heading to Pittsburgh, Ally had received her call for organs! I could never describe all the emotions that were felt that day, but the one I remember the most was the fear I felt. The fear of the unknown. One year later and I am struck with the same, crippling emotion....earlier tonight Ally was airlifted to Pittsburgh. Fear of the unknown has once again taken over my life.

Okay, maybe I am being a little melodramatic here, its certainly not like we are in the same boat as we were last year. We are not facing a 16hour surgery and overall Ally's health is about a thousand times better than last year. But still the irony of it all is so unnerving. I certainly had hoped that by a year post -transplant we would be spending a lot less time at the hospital.

I guess I better back up a little (no you did not miss an update, it has been a few weeks!). Since the last update Ally has been doing well, at least until we decided to go on vacation. Last Saturday we headed to the beach for a week. 12hours into our trip, Ally spiked a fever, no other symptoms. Mid week she spikes another temp, and once again bounces back, no other issues. Friday evening, she spikes again, needs a little oxygen but by Saturday morning she is looking good. Then she has a temp Saturday afternoon, Sunday morning, Sunday late afternoon, Sunday night, by Monday morning temp she has a temp of 103, is needing a liter of oxygen and she can still barely keep her sats above 90%. At this point its clear a trip to the hospital will be inevitable:(

Its very difficult for me to admit when I feel uncomfortable caring for Ally but I did not feel it was in her (or my) best interest to attempt a five hour drive to Pittsburgh. I decided to take her to our old stomping grounds, good ole, Hotel duPont! Unfortunately, no one at Hotel duPont feels comfortable caring for Ally either. Oh, don't get me wrong they were more than happy to see her, but no one really wanted to take responsibility for her care. Once she was stabilized Pittsburgh was contacted and arrangements were made for her to be transported. So Ally and Shane are in Pittsburgh, I had to stay home, my first full week back at work! The best laid plans......

As of now she is receiving IV antibiotics for what appears to be pneumonia (at least thats what the chest x-ray shows). I am not really convinced of this and figure when an echo is done we will have a more clear picture of what is really going on. My guess is the area of endocarditis is bigger or that it could possibly be shedding some of its layers of bacteria in turn, either could cause Ally to be sick. I also pray that I am wrong, that this is just simply pneumonia. A summer cold is probably pushing it, so lets just settle for pneumonia:( For now another ICU stay, although I am hoping she will be moved to the floor sometime tomorrow. Wishful thinking is what keeps me going most days!

Today when you pray for Ally's health to be restored please pray for peace and healing for her donor's family. I know the decision they made to donate is the reason I still have Ally here to pray for.

Jill

Comments:
Carol Yeager: I hope that all will go back to when Ally was doing better and I hope she will be abel to enjoy life as others do.All my prayers are with you all.

uni-brower: You all are in our thoughts & prayers--we all hope for a speedy recovery--Love to all

Trisha: Keeping your family in my thoughts & prayers.
F.I.G.H.T. Faith In God's Healing Touch
God bless you always.

Sheila Little: How frustrating after settling back into life in Eastern PA! As always, our thoughts and prayers are with you.

Tara Hannahoe: Praying for all of you. Such a long windy road this has been and continues to be. You all have amazing strength.

Oscar S.: Another challenge; another recovery, hopefully this is the last. We keep praying for you.

Debbie/Angel_Wings: Saying prayers for Allie today. God Bless.

Kim/Angel_Wings: Ally girl, So sorry you are not feeling well. I'm praying for your body to heal quickly so you can get back home. Sending you lots of love...Kim/Angel_Wings

MJ/Angel_Wings: Sweet Ally I am praying for you to be quickly cured os this infection. Please know that I am thinking about you and keeping you close in prayer.

Donna: Jill, I am so sorry to hear about Ally. You all have been in our thoughts and prayers. I was just thinking of your family because I added a new bead to my bracelet! It is a great reminder to send off a prayer...if Shanes needs anything whie he is here in Pgh please have him give us a call.

Barbara: Jill
I am sooooo sorry I missed you ....sorry that Ally is sick again and praying for a quick recovery...........her numbers look great!!!
Love to all

Deanna: So sorry to hear that you are back in Pittsburgh under these conditions. We will make contact with Shane and check on Ally's status today. Call me when you can. Thoughts and prayers are always with you!

Jodee Reid: ARGH!!!!!!!!!!!!!!!! We will be in on Thursday if Shane needs anything let me know.
Always in our thoughts.

Jessica: Hi Jill.
I am so sorry to hear about Ally. We will be praying for a quick recovery. Maybe we will see you. Andrew was also admitted to CHP yesterday. He is on 7N right now. He had had some unexplained fevers about 2 weeks ago which went away. His EBV spiked so we decreased his Prograf. He has developed some hernias where his incision is so they had us come to Pittsburgh yesterday for clinic to take a look. Turns out they are not concerned about the hernias right now, but after having labs done three times yesterday to check and recheck, his LFTs are elevated (and a week ago they looked great). A biopsy is planned for sometime today to determine if it is rejection. Since his EBV is also up, they aren't sure which it is and need to know before they can treat since they will be doing completely opposite things depending on what it is.

We are at about a year (September) post transplant and I know exactly what you are saying about hoping you'd be in a different place at this point. Thank God Andrew's hospitalizations have slowed down some since before transplant, but it is still a lot more than I had hoped it would be at this point.

I think of you guys often and you will continue to be in my prayers!

Jessica (Andrewâ€™s mom, Kidney/Liver TX at CHP on 9-19-08)

The Bollingers: Sorry to hear that Ally had to go back to Pittsburgh. Our thoughts and prayers are with her and your family..

phil h: We will say a pray for Ally in 2nd grade Sunday School at St. John's. Hope all goes well

Pastor & Kathy: Father in Heaven, as you have watched over Ally in this past year through the transplant, so watch over her now with your healing presence. Grant her physicians skill in caring for her and speed her healing. Give assurance to Jill, Shane and Ashley. In Jesus's name. Amen.

Donna: Your family is always in my thoughts and prayers. I had been hoping that when you did update again it would be great news but life does not always go the way we hope. I iwll keep praying for your family and God Bless.

Sandy Maicher: Prayers are coming your way. We think about you always.

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Thu, Jul 10, 2008 10:12 PM
I dont know what it is with summertime, but time certainly does seem to get away from me! At least that sounds like a good reason why I have not been updating this site:)

Ally has been doing wonderful!!! She was finally officially discharged to home last Thursday. Since the last update I had written I believe she had another hospital stay, once again it was for fevers/line infection/endocarditis, same old stuff. The line cleared pretty quickly and the docs thought it was just best to pull the line and be done with any kind of central line! So Ally has been without a line since June 30th, her first time ever without IV access:):):) Can you tell I am excited about this?! No dressing changes, no IV fluids to hook up, no need for precautions prior to bathing or swimming and Ally is even more excited than me! She keeps showing people her arm and saying "no more line, its all gone!"

The only down side to no line is the need for Ally to be stuck everytime she needs labs:( Which unfortunately has been fairly frequent due to some of her numbers bouncing around. She also had a pretty high fever over the 4th of July weekend so we had some blood cultures drawn. Thankfully they stayed negative but her white count was ridiculously high so clearly some sort of infection was going on. I don't really care as long as whatever it was stays far away! I will take her Monday to have labs repeated again and hopefully then we can move on to labs once every two weeks.

As far as everything else goes we have just been busy trying to get settled back into life in Eastern Pa. There is a million things to unpack and organize but we are just doing things little by little. We have to head back out to Pittsburgh the first week in August to see transplant again. Plus Ally will also have another follow up echo and scope done. Also I will be cleaning out whatever is left in the apartment and turning in my keys!

The girls have been enjoying lots of time outside and are swimming a ton. Ashley has been swimming like a fish and I am amazed to see how much she has progressed in the last few weeks. Today she even jumped off the dive for the first time! She also has her first loose tooth which she has been waiting for forever, especially since Ally lost two back in the beginning of June. The days seem to be going by so quickly but we are cherishing every moment big or small:)

Have a great weekend. It is going to be gorgeous here!
Jill

Comments:
Dayle and Dave: We are so happy that you are back in the area. We pray everyday for your family. Keep your chin up and if you need anything, please call.
Lov ya

brenda: so very happy for all of your family! glad to hear you are back home , we pray ally stays strong and keeps improving. take care, i've had a good summer so far, scott came home for a visit from colorado it was great seeing him. hope your summer continues to be great! best wishes brenda and rod

Ken and Becki: We're SO glad to hear that things are going well. We thank God for all His blessings and answers to our prayers. Love to you all, the Branfords

Donna Perovich: Jill, Ashley and Ally,
It is so nice to read a wonderful update. I enjoyed looking a the pictures of the girls. Ashley looks older already! Congratulations on that loose tooth. Remember to wiggle, wiggle, wiggle! Hannah misses you all!
Lots of love, Donna Perovich

MJ/Angel_Wings: Morning Ally I am so thankful you are doing so well and praying that you have a wonderful summer with no infections. Hugs special little girl, know that you are in my thoughts and prayers, MJ/Angel_Wings

Sandy Maicher: I am so glad to hear that Ally is doing well. We think about you guys all the time. It seems like forever since we have seen all of you. Our prayers continue to be with all of you. Now if we could just get John straighten out :( Give Ally and Ashley hugs from us. Take care.

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