Sunday, April 3, 2011

To My Dearest Daughter

Dear Madeline,

How are you doing? I hope things are well for you in heaven. I haven't written to you before but I do hope that God passed along all my prayers for you.

It snowed today. It was unexpected, but it came down and covered everything in white. The landscape looked much like it did the day we buried your body, calm and peaceful. I got some silicone bracelets with your name on it, I was hoping it would be something to always help me remember you. They came out looking pretty bad, I'll have to change it up a bit, maybe the next ones will look better.

Today we rented and watched Tangled, Disney's new interpretation on Rapunzel. It was a lovely and sweet story and your sisters loved it a lot. In the story, a princess is born and she has magical hair. A mean old woman who wanted the hair's magical power for herself stole Rapunzel away from her parents and hid her in a castle. Each year on Rapunzel's birthday, the king and queen would let a latern fly into the night sky in the hopes that someday their daughter would see it and return home. This had become an affair for the whole kingdom each year as they let thousands of lanterns fly into the night sky for Rapunzel.

Rapunzel, locked away in her tower, had always seen the lights on her birthday, but didn't know they were for her, but she longed to go and see them up close. There's a scene in the movie where the king and queen, all dressed up, get ready to let another lantern loose on Rapunzel's birthday.

I really felt like that king. I felt, like him, that my daughter had been taken away from me too soon, and each day I long to have you back. I send up prayers instead of lanterns, and like the kingdom in the movie, much of the kingdom here on earth also sends up prayers too...all of them for you. I hope you see their light. I hope it reminds you of me and your mother and your sisters here on earth. We all miss you so much.

I suppose though, that you won't be coming back to us. I look forward to that day, when we'll come up to meet you and be a family again. I want to hold you so much.

Love,
Dad.

p.s. your younger brother is doing well and we look forward to his birth. Your mom and I hadn't really settled on a name yet but your sisters all think he will be called Max.

Wednesday, March 9, 2011

Moving forward, but no on.

Hello friends,

Well life has been getting settled here. We have all gotten back into our routines, I go to work, and Lisa takes care of the girls. Sometimes Madeline's life can just seem like a dream that you woke up from, but it's also one of those dreams that you desperately want to go back to sleep and keep dreaming about.

Most mornings I cry in the shower. Not a big cry, just a quick one. And I'm glad because everytime I cry, it brings back my memories of Madeline, so sharp and so crisp. Other times I get caught off guard when I smell a smell or hear something that reminds me of my youngest daughter.

We haven't made much headway into working with or creating a local foundation to help families of congenital heart defect (CHD) kids, yet we still have a strong desire to do so. The help that all of you have offered us has been by God's grace the most powerful thing you could have done for us. Everything from encouragement and prayers to practical things like meals and cleaning house, it is all stuff we hope to be able to provide for other families struggling and living at the hospital.

Please continue to pray for us, mostly that God would lead us in a direction that would allow us to help as many as possible and also be able to minister to people with the Gospel of Peace that God freely gives us.

Thank you all for checking back in with us.

Grace, Shanker & Lisa.

Saturday, February 19, 2011

In prayer for the DiCarlo family

Crying and praying and crying and praying some more. I am so sorry and saddened to hear about Travis who went to be with the Lord today. I'm praying for his parents Roger and Nicole. It reminds me of Aaron who went to be with the Lord while we were in the CICU, I keep praying for Dan and Danielle as well.

It makes me prayer even harder and more desperately for Ava who is recovering from her surgery and for Abel who was our neighbor in the NICU and has now been readmitted because he is sick. Please keep praying for these children and for their wonderful families.

I'm out of words...

Travis' Blog here.

Thursday, February 17, 2011

Update on Wiegels - Pray for Ava who is having surgery tomorrow!


Dear friends and family,

It’s been a while since I had anything to say. Life is adjusting over here in Highlands Ranch. It’s hard not to let time just slip through your fingers and you get back into the groove of things. The girls are doing well, thanks for all who have been asking about them. I played one of Madeline’s videos on the TV the other night, and about half way through the video we noticed Molly curled up on her chair and sobbing. She really misses her youngest sister and was realizing all the wonderful things she will miss about sweet little Madeline.

There have been some highlights along the way which have been great. One of those was attending Abel’s (our NICU neighbor) gone home party. I cannot express how happy I am for Abel to be home with his parents and 3 other brothers. For some reason it is very important for me to be excited for him, maybe simply because he was one that wasn’t supposed to make it, and he did. God is great! We got to see some of our nurses and doctors at that gathering. It was nice to see what people look like outside of the hospital, I hardly recognized Abel’s mom, mostly because she had real clothes on and not pajamas or lounge wear that so many often wear when we live at Children’s.

Abel’s mom made it on the radio today to talk to a local radio station (Alice 105.9) about Abel’s story. They are doing a 36 hour radiothon to raise money for the hospital. You know you want to donate, so just call in and do it. There are lots of great stories from this radiothon about the patients and people of The Children’s Hospital. Check out Alice 105.9 on Facebook for more.

Last Tuesday Lisa and I had a strange experience. We went in to get an ultrasound of the new baby. Yes, for those of you just finding this out now, we are pregnant. I had mentioned it a couple of times here before but it seems most people didn’t get that far in some of the messages to read that. I understand. So since this new baby is considered high risk and will be until everything is in the clear, we headed downtown to see specialists for the ultrasound. What a strange feeling. It was 2:30 in the afternoon and here we were standing outside the same building at the same time of day when we first found out about Madeline’s soon-to-be-hard journey. We went up the elevator to the same floor, walked into the same waiting room, were met by the same doctor and escorted to the same exam room where the same team of doctors waited for us. They had all heard of Madeline’s struggle and offered condolences before starting with the ultrasound. We waited patiently for news. “3 vessel umbilical cord” – YES! “Heart looks good” – PRAISE GOD! “Boy parts” – WHAT?!?

We soon had that familiar feeling we had when we heard the news of Madeline’s heart condition, that sort of fear and anticipation rolled into one as we thought: “What are we gonna do with a boy – we’re not ready for this.” Nonetheless we are really excited for this new addition to our family. The girls had been hoping for another sister, but are now happy to have a brother. Now to figure out paint colors….

Another really nice moment we had was when Sara (one of our primary nurses) invited us to come to church with her. It was nice visiting with her and her husband and we had a really good time going out to lunch after that, although Macy was in rare form after not getting good sleep and then too much sugar covered donuts in the morning. It was great.

On Tuesday the 15th, Lisa and I decided to go to the hospital. I called up one of my customers and he gave us a good deal on some large desert and snack trays with all kinds of wonderful arugula, cheesecake, sweets, and fancy sweet breads and we brought it up to the hospital to treat the doctors and nurses and staff of the NICU. It was very strange being back in a place that felt so far left behind and as familiar as old jeans at the same time. Lisa cried a few times on the way up but mostly did a good job. I was sad too, it was way too easy just to think we were coming to see our daughter again, and then to realize that she wasn’t there anymore was heart breaking.

Thank you to all who have contributed and continue to do so to Madeline’s fund. We are still trying to come up with the best way to use the money to bless other families. One group that had been really helpful to us, because they can relate so much, is CHD families. From what we can find there doesn’t seem to be one in Colorado, maybe we should start one. Please pray for us, for wisdom, with what to do to best honor God and Madeline , and to help others.

Another BIG prayer request. Please pray for Ava, picture attached. She is going in tomorrow for open heart surgery. She is another young fighter like Madeline who has been through a bunch already because of her heart defects. This will be a long (4-6 hours) and difficult open heart surgery on a 2 year old sweet little girl. Please keep her and her family in your prayers throughout the day.

I probably won’t be sending out too many more of these emails, I don’t want to bore you or fill up your inbox. I will continue to post updates to Facebook and to Madeline’s Blog at www.MadelineGraceWiegel.blogspot.com. So please follow us there as we share our lives and the plans that God has for us with you.

Grace be with you,
Shanker & Lisa.

Monday, February 7, 2011

Lisa Tells Madeline's Story

From Lisa, my beautiful wife and amazing mother of Madeline Grace:

As I sit here and begin to write, I imagine looking out into a sea of people who love our sweet Madeline and I wonder if I will be able to speak at all, I'm going to give it a go and hope that God will fill me with the same strength He did as I stood by Madeline's side through the good days and bad days.

I have never been more terrified as I was the day that Madeline was born. I knew everything I could about her heart condition but when we discovered that she wasn't growing well we could only presume that something else was going on. On August 15 God gave me the mother's intuition that I needed to check on Madeline because something just wasn't quite right. Sure enough we soon found that it was time for her to make her grand entrance into this world. I was 35 weeks along but knew that she was tiny for her age, as I heard the words Emergency C-section, I fell apart. How could she possibly survive so tiny and with a sick heart? I feared that she wouldn't even make it through the day. When they told me that she was out and that she was alive my life was forever changed. I gave her a kiss and she was whisked away to the NICU.

I had never seen such a tiny baby in my life. I knew nothing about a NICU and the daily miracles that took place behind those walls. We soon began our crash course in medical lingo and I am amazed at how much I learned by the end of our stay. Well, Madeline amazed us all. She made it through her first day, and then another, and I some point I stopped counting the days. While we were still at St. Joes I got to hold Madeline for the first time. What a wonderful moment that was. She was so tiny and she curled up so sweetly under my chin. I felt her soft hair on my cheek and I never wanted to let go. I held her till my legs were so numb I could stand it no longer. One of my favorite moments early on was when we took her off of the ventilator for a whole day and a half. We heard her cry for the first time, the sweetest tiniest cry you have ever heard. She sounded like a tiny pixy fairy. Then back on the ventilator she went.

Soon it was time to say goodbye to St. Joe's and move over to The Children's Hospital, Shanker and I were a bit skeptical as we walked into our new home. Everything seemed so new and sterile and the staff seemed so young. Very soon we realized that we were in the best place possible for Madeline and for us. The staff was amazing and the love they showed our sweet little girl was so special to us.

Madeline had a lot of issues to overcome and it seemed that as the days went by she became more and more complex medically, yet despite all of her obstacles she started to develop the sweetest little personality. She was a strong girl, quite particular in her likes and dislikes, if she didn't like something she would express it in a way that would certainly frighten most parents. Though she was strong and feisty, she was also ever so sweet. She would look up at you with those big brown eyes and follow every move. She spoke mostly with her eyes. For those of us who knew her well, we could tell how she was feeling just by the look in her eyes. She loved having friends around to talk and sing to her and hold her pacifier. Most of the time she was quite a social girl and if she wasn't in the mood, she would let you know. One of Madeline's favorite things was to be rubbed on her forehead. Every time she would get this look of bliss in her eyes. I loved when she used her big eyes to check in with me when we had visitors, she would look at them and then look back at me as if she was just making sure I approved. There were days when she would honor me with her tears, as long as I stood there with her and held her pacifier she was happy, but the moment I walked away she would cry. Though it hurt to see her so sad, I felt so honored that she wanted her mommy by her side which is where I spent most of my time.
Madeline’s Blood transfusion Video—I know this video is not the greatest quality because it was made on our phones but I love it so much. Just watch her sweet eyes. This was just after her heart surgery and after a blood transfusion. We grew to like transfusions because they were like a cup of coffee to Madeline.
The kids watched that video countless times in complete adoration of their sister.
Madeline also adored her sisters. It was obvious that she knew their voices and that it brought her joy and comfort to have them around (at least until they got too noisy!) I loved watching the girls interact with her. They were precious, the way they played with her fingers and gave her sweet little kisses. They loved singing her songs and Madeline loved it too. Some of the favorites were Away in a Manger, the ABC’s, and the wheels on the bus.

She had other visitors too, friends and family who stopped by to meet her, pray with her, hold her, and share some of their love. I wish everyone could have spent time with her, but she was just too fragile.

There was a great chunk of time in Madeline’s life, she was without infection and there were no major happenings for about 2-3 weeks. We met Dorothy during one of those good days and she came in and gave me one of the best days ever. Madeline was about 10 weeks old and 3.5 lbs. at the time and she had never had a bath! I soon found out that Dorothy was known for her baths and for making the babies look their best. I was a bit nervous but her confidence made me feel so capable. We lined Madeline's bed with diapers and scrubbed her clean. And if that wasn't special enough, we then got her dressed for the very first time. Something I had dreamed of since before she was born. The tiniest outfit I could find was still a little big, but wow, she looked so sweet. I loved the way the clothes hid her many wires and made her look so normal and healthy. After that Shanker and I got to hold our precious little bundle. It was a great day. There weren’t many but Madeline did have a handful of great days.


I'd love to tell you all of the things that she did overcome in her life but the list is rather long, some of the biggies were heart surgery at two weeks and two pounds, numerous lung infections, surgery on her diaphragm, a feeding tube through a hole in her tummy, a few MRI’s , a heart catherization and many more. One memorable one for me was when she was being re-intubated (or getting a new breathing tube). It was my first time experiencing such a thing and I chose to stay and pray our way through it. Well, once the tube was out, Madeline wouldn't let the new one back in. She held her breath and clamped down so hard her heart rate started dropping quickly. It is moments like these when God showed me strength beyond all comprehension. I would expect to be a puddle on the floor as I watched my baby’s heart rate plummet, yet He always kept me on my feet, praying like crazy. The doctors were amazing and calmly got everything where it needed to be. It is their composure that is truly impressive in the tough moments. Madeline gave us all many scares, yet God sustained her through more than I ever would have imagined.

I know there are many stories of Madeline's days, because rarely did she have a boring day. Something was always going on and usually it wasn't much fun. What was fun however was getting to know our nurses, the NICU staff and doctors, and the other NICU babies and families. They are all amazing and I am sure that many of them will forever be part of our lives. Not many people knew our Madeline like the NICU staff did. In many ways, they were her family. It became a huge blessing to Shanker and myself to find many people along the way that know and Love the Lord. We will be forever grateful for those faithful people he placed around us during our journey. Not only did these folks do their jobs beautifully but they were able to remind us of the Truth as we walked through the tough times together.

Sara was our first nurse at Children's and what a blessing she was from day one. Not only was she there on day one and many days to follow, but she was there for Madeline's last day. I have never know such incredible strength from the Lord as I experienced on that last day as Shanker, Sara, and myself worked through those tough moments together. Though our hearts were broken, we still had little Madeline’s body to care for. We turned on the worship music and reminded each other that Madeline had already gone to heaven and had a new body, the rest was just formalities. We got her all prettied up and in the end her old, broken, body laid to rest in a beautiful pink treasure box. I have never known such deep love for Jesus until that day when I was so thankful for his death on the cross that made the way for us to live eternally with him in heaven. And I can be confident in the fact that our little girl is safe and sound in his loving arms and there she will be until we meet again. Sara thank you for your confidence in the Lord as you walked us through that day.

There is much more to Madeline's story outside the NICU walls but before we get there, I want to thank those who made it possible for Shanker and I to spend as much time with Madeline as we possibly could. I know there are not enough words to thank you for the amazing gift you have given us but I will try. To the NICU staff, our hearts are filled with a gratitude that is so big it is hard to contain. I know there are sick babies that don’t make it even a day and we were so close to being in those shoes. Madeline was a pretty sick little girl and you all gave her the best chance at living possible. Day after day she surprised us with something new, yet we know she was a fighter with a will to survive and you all did everything you could do to help her overcome each obstacle. Because of your skills and expertise we got to spend so many wonderful moments with her and we will cherish those moments forever.

Thank you to my sister Linda and her family for taking our kids almost every day for the past 5 months and for being the coordinator of all activities as my brain was completely preoccupied. You are amazing! Thank you to her support system of church and friends that helped her family function through these last 5 months. Thank you to my parents and Shanker’s parents who went above and beyond in their grandparent duties and stepped into our home and kept it running during hard times. Thank you to our church family for taking care of groceries, meals, and cleaning the house so that our time could be spent with Madeline and her sisters. There were many others that kept life rolling thank you to MOPS and Terri from There with Care who adopted our family and kept our kitchen well stocked. Thank you to all of our family and friends who were a constant support even from a distance. It was because of you all that we got to really know our baby girl and for that we will be forever grateful.

Madeline's Story

Dear family and friends,

Today was Madeline’s memorial service. The service was beautiful, and I was humbled by all of you who honored Madeline and us with your presence. Thank you all again for your presence at the memorial whether in body or in spirit. As I was thinking about Madeline and what to say at the memorial service, I kept thinking about her story, what was her life about, what was God’s purpose with her? This is what I came up with.

When we first found out about Madeline’s heart condition, we were both scared. Back then, I didn’t realize what this was all about. You see I thought that this battle, this thing with Madeline, was going to be between God and I. We were stuck in this situation, the result of a fallen world, and it was my job to convince God to perform a miracle, and deliver Madeline from this problem that she had.

Now convincing God to do something that you want Him to can be a difficult task so I enlisted help, mostly of my local congregation, figuring that if I had more people trying to get God to see things my way, he may consider my plea and respond favorably. And so we prayed and prayed and prayed. As time went on and ultrasounds came and went, little changed with my daughter still in the womb but we still had time and my faith and my perseverance were not wavering.

The time came for Madeline to make her big entrance into the world much sooner than expected. It was on a Sunday. I was at church with the girls and Lisa had gone to the hospital to check up on Madeline. Her motherly instincts had told her that something was not quite right, but she knew everything would be fine and wanted me to go to church anyway. Then I got a call from Lisa, she said: “You need to give the girls to someone, get a car, and get here right away. Madeline is not well and they’re going to do an emergency c-section.” I was scared, and I was helpless to do anything. Madeline Grace came into this world on August 15th, around noon, 2lbs 8ozs. She didn’t cry or make a sound as they whisked her away to the NICU.

In the minutes and days and weeks following, I continued to feel helpless and broken. I was just a spectator, sitting by as nurses, doctors, and specialists made their rounds and gave their opinions on what to do to give Madeline the best chance for survival. Madeline might have had a chance had she gone full term, but now she’s 5 weeks early and fighting for her life. What was happening? Didn’t God hear my pleas? In the crazy environment of the NICU at St. Joseph’s hospital, where it seemed each moment could be Madeline’s last, I began, mostly out of desperation, to compose the first of my emails. Each time I wrote it was my goal to let as many people as possible know what was going on with Madeline, and get as many people as I could on her team praying for her. Maybe with the newly added reinforcements we can finally get God to change His mind and perform that miracle for Madeline.

I soon moved over to posting updates on Facebook as a way to reach yet more people, pleading each time that people would pray for Madeline. Each time I would send out a note, more and more replies would come back. Notes of encouragement, people thinking of us and Madeline, people praying for us, and quoted scripture. I was amazed by the faith with which people prayed. There was this confidence with each prayer that God is able to heal Madeline. I would always get these replies: “Praying continuously for your little girl.” We were so encouraged by those replies and so hopeful that Madeline would be healed. I remember one of the very first replies came from my friend in grade school from Brussels, whom I hadn’t spoken with in years, but had found me on Facebook. He says:

“Hi, Shanker, My English is a little bit bad and I didn't know the correct words I wanted say to you: I also pray for you now. When you knew me, i had no real 'touch' to God but it changes. life learns me a lot about and I deeply know that God hears us when we need. And don't forget: God often saves 'in extremis', to improve our faith. Kind regards, Friendly, Xavier.

I was amazed at how for Madeline’s story had travelled and how many people were being reached.

We got moved to Children’s hospital after 6 days. It was there that our eyes were opened to many others in similar situations to ours. In a short while it was time for Madeline to undergo her first cardiac surgery. It was a complex and crazy day.

That night was a night we will never forget. God got into the deepest depths of our souls as we watched the reality of what happens in the hospital unfold. We prayed like never before as we cried out to God for help for Madeline and for those around us. As the days passed and we realized how honored we were to be there on that hard night in the Cardiac Unit. God was able to use is in a way we had never imagined, to pray. And from that moment God led us to pray for everyone around us. This verse from Job 13:15 about faith in God came to mind that night:

“Though He slay me, yet will I hope in Him”

That’s when things began to change for us and Madeline. Our faith began to increase, not in God’s ability to heal Madeline, but more to trust in Him and His plan. I kept sending out messages and I kept telling the story of what was going on at Children’s Hospital. More and more replies would come in, and the story kept spreading. We started hearing from people who knew someone that knew someone that heard about Madeline’s story.

I remember Lisa telling me, that no matter what happened, she wanted Madeline to “have a good story.” Now as I look out over this sanctuary, as I scan the countless emails, letters, and cards I see that story coming together, and it’s oh so good. What could bring together family, friends, co workers, a UPS delivery driver, a woman who met us at a garage sale, and so many countless strangers united in such an endeavor? Who could get so many around the world praying in unison? And who could give us another little baby?
Only God could have created such a story.

Through Madeline’s story, God was increasing our faith. We saw many miracles along the way, some of them in Madeline, some in others that we had been praying for. As time went on, God was teaching us new ways to pray and what it means to pray without ceasing. I heard from many of you who had not prayed regularly or at all before and how your prayer life got jump started again. I was humbled as God used all of you and molded you into one body, where if one member of the body suffers all members suffer along with it.

Madeline’s life on earth has come to an end and left so many of us forever changed. Please continue to pray remembering and sharing the story of how God used one small life to teach us all about faith, trusting God, and prayer.

Grace,
Shanker & Lisa

Saturday, February 5, 2011

Preparing for the memorial

Dear friends and family,

Here we are, trying to readjust to a normal life. For the most part we do well, always remembering to put one foot in front of the other. Then there are times, the quiet times, where something has built up and we get very sad missing our sweet little Madeline so much. I find myself worrying about all the things I didn’t get to do for her as a dad, teach her to read, tell her jokes, take her dancing, walk her down the aisle.

There are still awkward moments when someone who knows Madeline but not of her passing makes a comment wondering how she’s doing. At those times I find myself unable to speak, but my silence quickly reveals to them what has happened. One such moment was when I went next door to the print shop. I hadn’t realized they knew Madeline, so when I showed up with a copy of the memorial bulletin to get a proof the owner just lost it. I am constantly amazed by the far reaching story of our little girl.

The memorial is coming up this Monday morning at 10am at Greenwood Community Church and I really hope that a lot of you can make it. We’re scrambling to make final preparations and decide what should be said and what shouldn’t. For us it’s important to mark Madeline’s short life on earth and have as many witnesses as possible to her life and the work which God has done through her.

Thank you all so much for your cards, emails, facebook posts. It’s reassuring to know that whenever we need encouraging, we can always walk to the mailbox or check email for some. Please keep it coming because it means so much to us. We love hearing about how Madeline’s life and story has reached you and affected you.

Thank you also for your generous gifts to Madeline. We are making sure that the right funds get to the CHD Foundation and the mark has already been reached for Madeline’s name to be memorialized at the hospital (YEAH!). We are still figuring out how to best use the other funds to help families – so many questions and so many logistics. We really desire to be good stewards of that money and use it in the best possible way to support as many families as possible.

Please keep praying for us as we readjust to life. Pray for the upcoming memorial service, that it will be honoring to Madeline and glorifying to God. Pray for wisdom and help with our involvement in supporting families in need, as they bear under the weight that we are still so familiar with. Pray that we will be able to help many other families with what we have received. Thank you all so much again.

Grace,

Shanker & Lisa.

Tuesday, January 25, 2011

CORRECTION on Memorial time

Dear friends and family,

I apologize, I made a mistake with regards to the time of Madeline’s memorial service. It is actually from 10-11am on Monday, Feb 7th with a reception to follow. No, it is NOT a 3 hour long memorial service. The location is still the same at Greenwood Community Church @ 5600 E. Belleview Ave., Greenwood Village, CO 80111. Thank you for your understanding.

Grace,
Shanker & Lisa.

Madeline's Memorial Information

Dear friends and family,

We’ve landed safely (and a day later than expected) back in Denver. Lisa’s sister Linda and her husband planned the trip and took our kids for the weekend so we could sit on a beach in Mexico and get some alone time to relax, grieve, pray together, and start thinking about a memorial for Madeline. We had some good food, played in the waves, slept A LOT, and got something in between a sun tan and a sun burn.

Thank you all again for your continued love and support for us and for Madeline Grace Wiegel. We are continually amazed at God’s goodness in the midst of all of this and the far reaching stretch of Madeline’s story as we continue to hear from people we haven’t heard from in a while and also those whom we haven’t even met. It’s now obvious to us that the impact of Madeline’s short life on earth will be felt for much longer.

We are still in the planning stages of the memorial services, but would like to announce a date and location. The memorial services for Madeline Grace Wiegel will be held on Monday, February 7th, 2011 from 11a-2p. The services will be hosted graciously by Greenwood Community Church in Denver, CO, located at 5600 E Belleview Avenue, Greenwood Village, CO 80111. For directions and information you may contact the church at (303) 843-0281.

We are making this an open invitation to all who desire to attend. We don’t know how many people know our daughter and don’t wish to exclude anyone who would like to connect and grieve and celebrate with us the miracle of our daughter’s life. We do ask please that you RSVP so we can approximate the number of people attending and make preparations accordingly. Please RSVP via email to ShankerW@yahoo.com, in the subject line write “RSVP” and include the total number of people attending.

In lieu of flowers, we have asked that donations be made in honor of Madeline Grace Wiegel. The money will be used to cover any memorial service expenses, for a family vacation, and to set up a memorial fund for Madeline Grace. This journey has required us to spend a lot of time away from our other 3 children and we think it would be fun to take some time out of our busy lives to get away as a family.

We haven’t quite figured out how Madeline’s memorial fund would work, but we expect it to be a long term ongoing fund to support the Children’s Hospital and to benefit families who are currently living in the NICU at Children’s, where our daughter once lived. If you would like to contribute to the fund, please send checks to Shanker & Lisa Wiegel, 460 Prairie Ridge Road, Highlands Ranch, CO 80126.

If you would like information on how to donate directly to the Children’s Hospital in honor of Madeline Grace, please contact Katherine Schroeder at The Children’s Hospital Foundation. Her number is (720) 777-1755 and her email is kschroeder@tchfden.org. She has been very helpful in helping us to setup this fund.

Thank you all for the cards, correspondence, emails, fundraising and generosity so far. Thank you that we came home to a clean house. It is truly overwhelming. The thing we most look forward to is the stories of how Madeline’s short life has touched yours. Your words have been so touching that we have found that we can only read 3 or 4 cards at a time and then we have to take a break and regroup. So thank you again, for EVERYTHING, for your generosity, kind words, and prayers.

Please continue to keep us in your prayers as we plan Madeline’s memorial service. Pray for wisdom for the things to say and do that will best help people to reconnect and remember our little daughter. Pray for wisdom for how to use funds collected to benefit as many families as possible and for the best way to help them. Pray for peace to continue to reign in our lives as we cope with the loss of our youngest daughter.

And now for some good news….we’re pregnant, unexpected and unbelievable.

Grace,
Shanker & Lisa.

Thursday, January 20, 2011

The new beginning

Dear friends,

Thank you all so much for coming out for our open house. I know the weather got bad, but to see so many of you come was a blessing. Thank you also to all of you who were present with us in the spirit. God has been so good to us through this entire trial, truly He is good. We didn’t deserve any of the help, support, and prayers we received, yet they came in abundance. It is humbling to be a recipient of so many blessings.

The hardest day of my life was watching my daughter die. Yet it wasn’t as hard as I would have expected, God carried us through with His strength. The next hardest day was today, going to the funeral home to bury her body. We had been there a few times already to sort out formalities and details, but this time we couldn’t even get in the front door. We had to come into a room and see her body one last time. This was required so we could identify her.

Boy was that hard. I know that Madeline’s spirit is with God, but still having her body so near to us made it so hard. The nurses from the NICU turned out in mass, they helped carry us and Madeline through each day of her life, and they were here again to help us and Madeline through the last day. Words can never express how joyful we are that they came. They lent us their strength to make it through.

The ceremony was nice, simple and sweet. My 3 girls played an important role in distraction, Macy especially helped people from grieving too much with loud questions like: “Why is he speaking?”, “Where is Madeline?”, “Why are we praying again?”, and “Is Madeline in that jewelry box?” referring to the small pink casket on the table.

After the message, I handed the casket to one of the grounds crew who placed it in the ground. We prayed, and then played music while each person got to deliver a rose to her as they said their goodbyes. We released balloons and watched them rise into the sky. We dismissed everyone and stayed until the burial was completed. Everyone else stayed too.

I announced Madeline’s completed life with the words: “It is finished”. As I read through the countless cards, emails, and Facebook posts, I realize how many people have been touched by Madeline’s life. The common theme among those working at the hospital was how much they enjoyed and looked forward to going to work while Madeline was there. Seeing the huge masses of people we know and people we don’t know praying for Madeline, I realize it has only begun.

Now to plan a memorial. How do I keep this thing that Madeline and God started going? What do I present that will help people remember Madeline the most? What does God want from this? Please pray, and continue to offer us your thoughts about Madeline and what she means to you as we plan this. For right now, we’re off to Mexico for a quick and much needed rest. See you all again real soon.

Grace,
Shanker & Lisa.

Tuesday, January 18, 2011

Planning a memorial

Dear friends,

Sorry for the long message. It’s been a hard couple of days. Realizing the task ahead of us of planning a memorial for our dear little daughter is a little much. However, we hit the ground running, making calls and trying to learn the first steps of what ones does in such a situation. We made good progress for a while, then we got tired and started bickering a little with each other. Then we regrouped and made more progress.

Most of the time it went well, making the phone calls and collecting information, until someone asks why we’re calling and we have to tell them that our daughter just died. Or if they ask for a name, the conversation just stops for a moment as we struggle to compose ourselves and speak. Sometimes I just want to avoid the topic all together to avoid any awkwardness.

It’s hard to figure out just what kind of memorial service to plan. We think of questions like: “What was Madeline’s life all about? What do we most want people to remember about Madeline?”. And we hadn’t even considered that we were supposed to do something with her body. The support you all have lent us has been incredible. You have given us ideas and things to think about, and even a really funny story.

The kids are taking this all too well. We worry sometimes that they don’t understand what’s going on, but they do. The know where Madeline is and they have what we all wish we had, the faith of a child. As I sit here typing this email, Miranda came in and started bouncing on the bed. I told her how much I appreciate her and her sisters letting mommy and daddy have all this time off to plan for Madeline’s memorial. Her reply: “But Madeline is in heaven with God!” I told her to always remind me of that.

There’s been this group of people on Facebook who have been going gung ho to help us. They are parents of children with CHD (Congenital Heart Defect), some who are with us, and some who aren’t. They are all over us like bees on honey, offering condolences, creating prayer chains, sending gifts, offering phone numbers in case we want to talk, making a special ribbon in honor of Madeline to raise money for us. Really it’s just incredible. They almost seem overwhelming in a way and I just couldn’t figure out why they were doing what they were doing until now.

I was driving around yesterday thinking about Madeline and missing her terribly. I became afraid that I might start to lose the memory of her. I was scared to death that one day, the sharp crisp memory of the life she spent with us and the awful pain we felt when her heart stopped might be replaced by a fuzzy memory of a daughter I once knew. I want to feel the joy of having her as a daughter, as well as the pain of losing her, each day for the rest of my life.

5 months, they go by in a flash. I don’t remember the first 5 months I was married and I don’t remember the first 5 months of each of my other daughters lives. It’s different with my other children, because even though I don’t remember everything that happened, I do remember the highlights, and we’re always creating new memories each and every day. With Madeline, these 5 months are all we’ve got, there aren’t going to be any new memories with her until we get to heaven.

I understand now wanting to reach out to others who will struggle as we have. I can’t wait to tell them “We’re here for you, we will help you, we will pray for you” and to ask them about their child and tell them about our daughter. And I want to rejoice with their joy and suffer with them in grief because it will help keep Madeline alive in the most active parts of our brain where we won’t lose her.

As Lisa and I think about Madeline and how and where to remember her. All we can think is how badly we want to get back to the hospital. Children’s Hospital was Madeline’s life, all that she knew and all the time we spent with her was there. And not just time spent with her, that is where we also made friends and comforted and prayed for others who were in the same situation as us. We encouraged one another and celebrated big when a baby got to go home. We’re going to have a gravesite, and we’re going to have a service, but we want Madeline’s memories to be at Children’s.

A lot of you have offered help and some of you have just started to help without any direction from us and we thank you for all you have done. Here’s how we would like you to help us now. Lisa and I have talked often of, when this is all over, taking our family on a wonderful vacation – somewhere sunny with a beach. We want to spend quality time with our kids to make up for all the time they didn’t get to have us, all the times that mommy or daddy didn’t come home from the hospital and they had to spend it somewhere other than home. They tolerated it well, but we do miss that time with them.

Also, we want to give money to the Children’s Hospital Foundation. If money is donated in honor of Madeline Grace Wiegel they will set up a fund in her name and we will get to decide how that money is used. Whether it’s to help families in the NICU, or provide services for families that lost a child, or to order comfortable pillows for all the moms that spend nights there to be close to their child (if you’ve been there you know what I’m talking about). If the contributions exceed $1,000.00 then Madeline’s name will be memorialized on a plaque in the hospital. And we can always continue to have fund raisers (5K race anyone?) and contribute to her fund over the years to help others.

Another thing the hospital has offered us is that if we wanted to meet with their designer and pick out and purchase a piece of artwork for the hospital then we could have a small plaque with Madeline’s name on it next to the artwork. Lisa and I could think of nothing better than to be back in the hospital, on the 4th floor, in the NICU waiting room staring at a beautiful painting and a small sign that read “Madeline was here”. It would give us an opportunity just to be there and to say hi to Madeline’s nurses, and pray for those families who are struggling and for the babies in the NICU where our daughter once lived.

If you would like to contribute, and we would appreciate that more than flowers or gifts (although we won’t turn either away), you can send checks to Shanker & Lisa Wiegel, 460 Prairie Ridge Road, Highlands Ranch, CO 80126. If you would like the money to go the Children’s Hospital Foundation, simply write that on the check. If you would rather the money go to us, please use our names. The money we receive would go towards memorial expenses, a family vacation, artwork for the hospital, and the remainder we would include with our contribution to the Children’s Hospital.

You all have been terrific. You have been such a blessing to our family and to Madeline. I will keep telling you that, I hope you don’t mind. We appreciate all the support, generosity, love and prayers so much. Your notes of support back to us have been the most precious. I praise God for blessing us with such great friends. We are planning a memorial service for Madeline Grace and will include all of you in the details when we figure them out. In the meantime, please keep us in your prayers as we plan the memorial service, specifically pray for wisdom and calm hearts.

Grace,
Shanker & Lisa.

Sunday, January 16, 2011

Happy Moments, Sad Moments

Dear friends,

Thanks for being part of our lives and part of Madeline’s life too. The past 24 hours have been surreal and confusing sometimes. Madeline has certainly left a big hole in our life and it will take some time for us to sort it out. I almost said fill it, but right now I don’t want to fill that hole, I just want to leave it alone and let it be Madeline. Part of us wants to move on and finish the grieving, part of us wants to relive the pain it as often as we can before that crisp memory of those final moments with our baby girl fade into a fuzzy memory of someone we once knew.

In the past 24 hours there have been some sad moments, and some really happy moments. If you’ll allow me to share these with you I’d be grateful. I’ve labeled them either happy or sad moments so you can feel free to skip down and read only the ones you want to:

Sad moment: Leaving the hospital for the last time knowing we wouldn’t be returning to see Madeline the next day. Saying goodbye to Sara (for now), she was Madeline’s first nurse at Children’s and her last. It was hard, but with the encouragement of those who came to be with us we made it.

Happy moment: We took the girls (Molly, Miranda, and Macy) out for ice cream to break the news to them. Lisa thought we’d better tell them in the van before going in to get ice cream. We got in the parking lot, unbuckled and Lisa started tearing up as she began to talk to them. “Girls, it’s been a very difficult day and..” The van door suddenly begins to slide open. “Close that door Miranda!” The van door closes, Lisa continues: “Madeline has been very sick and..” The van door opens again. “Miranda, close the door!” “But I thought we were gonna get ice cream!” “Just listen..Madeline was very sick and she went to be with God in heaven today.” Miranda waited patiently at the van door, Macy smiled and made a face. Molly got sad as she processed the information, “Does this mean we won’t get ice cream?”

Happy moment: After ice cream we drove silently to Linda’s house to drop the girls off. When we got to their neighborhood, the girls broke out in a spontaneous round of Joy To The World: “Joy to the World , the Lord is come!/Let earth receive her King/Let every heart prepare Him room/And Heaven and nature sing/And Heaven and nature sing/And Heaven, and Heaven, and nature sing.” We didn’t know what to do so we joined in the singing. Praise God for our innocent little distracters.

Happy moment: As Molly got into bed last night, she said: “I wonder if Madeline’s gotten used to her wings yet.”

Sad moment: When I woke up this morning, I realized that we weren’t going to take 2 cars to church or bring the girls up to the hospital to visit Madeline after church as we have done so many times. I cried as I wondered what we would do with all the empty time that was always filled with being at Children’s Hospital taking care of Madeline.

Happy moment: My brother had to tell his boys about Madeline. Calvin, the oldest, was concerned and thought they should pray. Calvin prayed: “Dear God, please send Madeline back from heaven so she can play with me and I can pray with her.”

Sad moment: We checked the mail this morning on the way to church. Lisa was hoping for a bracelet she’d ordered from CHD, instead there was a package, a gift addressed to Madeline Grace Wiegel. Lisa cried as she opened the package, inside a beautiful outfit for Madeline and a note: “Lisa & Shanker, I actually mailed this package on December 7th but had the incorrect address. It came back to us on Jan 6th! I am now resending it to you – hope it works perfectly this time.”

Happy moment: Going to church to be with our Christian family. We cried, but were happy to be around those who loved us dearly and hugged us and encouraged us.

Happy moment: It was great to be praising and worshipping God in song this morning. As we sang Lisa leaned over and said she had a vision of God being happy with our worship to him and dancing around to our singing as he held Madeline in his arms.

Sad moment: Adam came up to do communion and could hardly keep it together. As he read from Luke 24, he shared the hard fact of what we must do when one dies, as those that were closest to Jesus went to his tomb to take care of his body. It made me think about Lisa and Sara taking care of Madeline’s body after she had left. We had an advantage however, because we already believe in heaven and knew where Madeline was. I wonder what kind of wreck those closest to Jesus were in as they went to care for his body.

Happy moment: The sermon. It began with the words I had written “It is finished” referring to Madeline’s life. It was a beautiful representation of the gospel of Jesus, and not a story of the defeat but of the victory that Jesus won on the cross when He claimed in a loud voice: “IT IS FINISHED!”. To have Madeline’s story so closely tied to the gospel in this sermon was moving for me. I will make it available as soon as it gets uploaded.

Sad moment: Driving away from church, not sure where to go, wondering what we’re gonna do next. How do you plan a funderal? How are we gonna celebrate Madeline’s life? How do I not let this thing that God and Madeline have started die, how does it keep going and growing to touch lives for Jesus.

Happy moment (Always end on a good note!): Getting an email from Danielle, of Dan and Danielle, who lost their son Aaron on the night of Madeline’s first cardiac surgery in the CICU. It was so heart touching to hear from them, to know they have been praying for us as we have prayed for them. Her words were touching and made us both cry, but in a happy way.

Grace,
Shanker & Lisa.

Saturday, January 15, 2011

Madeline went to play with the Angels


Dearest friends,

It is finished. This morning God called Madeline and she did what I had told her to do. She trusted Him, and she followed Him and now she is playing with the Angels in heaven.

I prayed for Madeline when I woke up this morning. I prayed as usual that God would heal her and spare her life. I also prayed that if God should call her to heaven that it be quick and painless. I was thinking of Elijah as I made that prayer. The bible never mentions that Elijah died, he simply went to be with God. That is how it was with Madeline.

Lisa had called me to come down to the room (I had been keeping my distance because of my cold), as I walked into the room everything was calm and peaceful. Everyone who needed to be there for Madeline in her final moments was just outside her room. And then she just left. In a moment everything just stopped and I knew then that Madeline had answered God’s call.

She was tired, she had had a difficult time. She was ready to go. I let everyone know and you all prayed. God’s strength filled us up and carried us through this moment. I asked for wisdom, and God gave it to me. The docs wanted to know if we should keep on going to save her life, and Lisa and I knew they were just working on her body and that she had left, so they stopped.

We got to hold her one last time, without all the wires. I got to really hold my daughter for real the first time, without fear of something pulling out or her sats plummeting. I held her tightly, much more than I would have done before given her condition, and I was able to walk around the room squeezing her close to my chest and kissing her head.

We just stood there for the longest time holding her and praying and praising God for the time we had with her. We praised God for his goodness to us, for the strength that have gave us each step along the way. We praised and thanked God for Jesus who died on the cross for our salvation and that because of Jesus we can be in heaven and see Madeline again.

We asked God to care for her, to lift her up and help her take her first steps. We asked him to keep her until we can see her again when we leave this world and go to heaven. The radio was playing some music that Jen, one of Madeline’s nurses had made for us. It was a song from 3rd Day called Just to be with you. They lyrics at that moment made so much sense:

“Just to be with you I'll do anything,
there's no price I would not pay, no
and just to be with you I would give everything.
I would give my life away.”

Madeline is indeed with God and she gave her life away to be with Him. Now her room is calm and quiet, peace surrounds us on all sides. Lisa and Sara are tenderly caring for Madeline’s body, removing everything from her and giving her a bath and a clean diaper. I don’t know what we’re gonna do now, I don’t know what tomorrow looks like, but I know who holds tomorrow in His hands and I will trust him forever.

Thank you for everything, I will never thank you enough. Lisa wanted Madeline to have a great story that glorified God and for us she has. I would greatly appreciate it if you all share with us how Madeline has touched your life and how Madeline has touched your heart for God. Please share with us this amazing story that is Madeline Grace Wiegel, born August 15th, 2009 and left us to go to heaven on January 15th, 2010.

Amazing grace,
Shanker & Lisa.

Madeline turns 5!


Dear friends,

Today is Madeline’s birthday! She turns 5 (months that is). I guess she just really got worked up these past few days at the idea of crossing such a milestone in her life. This morning we snuck in up close to her, Lisa, Sara her nurse, and I, and sang her a sweet happy birthday song. She’s still so out of it that she didn’t seem to notice much.

As I reflect on her life thus, I think about the many lives she’s touched and all the accomplishements she’s made, here are some highlights:

At 5 months of age, Madeline already has…

..had a heart rate higher than 300 and lower than 10.
..breathed at greater than 200 breaths per minute and held her breath for a long time.
..soiled 5 diapers in less than 6 minutes.
..brought her parents inexplicable joy and great distress.
..played peek-a-boo with mommy.
..laughed with daddy.
..smiled and wiggled when her sisters come to visit.
..cried when she was sad.
..shared her story with people across the world.
..caused many people to reach out to God in prayer, some for the first time in a long while.
..taught us all to trust in God.

I am so proud of my little girl, she is the toughest person I know. I love spending time with her praying and telling her about all the things I look forward to doing with her as she gets older. I always try to remind her to trust in God, that if she goes, He has a much better place prepared for her, and if she stays God will give her all the strength she needs. Her mom can spend hours just staring at her.

We had a calm night with her. This morning her sodium is really low and she’s started a nose bleed. Hopefully not something to worry too much about, I get them all the time. Your prayers and notes of encouragement have been so powerful to help Lisa and I through this trial. God, through His unending and amazing grace, has been so good to us through these difficult trials.

Celebrate with us, Madeline’s 5 month birthday. If she could make a wish and blow out candles I think I know what it would be. We love you all so much for how you care for us and love Madeline. Thank you all dearly for that.

In His Grace,
Shanker & Lisa.

Crazy couple of days

Well it's been a crazy couple of days. It all started Thursday night when I got a call, "Come to the hospital as fast as you can, call the neighbors so they can watch the kids". I have sent and received over 100 emails in the last 48 hours. I'll try to chronicle here all the quick messages I had opportunities to send out.

Thursday 01/13 7:18pm
"Please pray for Madeline right now, she is really struggling with the vent to breathe. Lisa can't seem to get the right doctors to give Madeline the attention she badly needs. Pray for a rescuer for Madeline."

Thursday 01/13 7:22pm
"Dhondi Wiegel: I just got a TXT from my brother that his 5 month old daughter, Madeline, who has been in NICU since she was born is struggling to breathe. They can't seem to find a doctor either. Will you all take 1 quick minute and pray for a rescue.
Doug Haarer: Lord Jesus help Madeline breathe!
eProf Jim Carder: Yes Dhondi. Let's all pray.
Doug Merriman: Father I ask for a Miracle in Madeline. Lord rain heaven upon earth. Jesus restore her completely
Doug Haarer: send help to her!
Dhondi Wiegel: Guide my brother with Peace and Wisdom Lord, pray that He trusts in you more and more even at this hour. I pray for healing for Madeline.
Tom Toner: Father, help this little one breathe.
eProf Jim Carder: Father. Giver of life and breath. Help Maddy....oh God, breathe new life...send your help from above.
Roger Day: Father you know what is going on with Madeline....you created her and I pray for your healing hand to be upon her and comfort her parents
Ben Bursack: Lord Jesus, send your power to help Madeline.
Shane Lunderville: Lord your healing hands on Madeline, and giver of breathe and life please sustain this little one.
JD Loy: Father we lift up Madeline to You, You are the great physician, put Your healing hands on those who can
Doug Haarer: Lord jesus this is in your hands.
eProf Jim Carder: Give calm to the parents. May your presence fill that place tonight.
Doug Haarer: You are Lord Soverign over this situation!
eProf Jim Carder: Thank you God. In your name, Amen.
Doug Haarer: amen
Roger Day: Amen
Doug Merriman: Amen
Ben Bursack: amen
Tom Toner: amen
JD Loy: Amen
Wagner Castro: amen
Shane Lunderville: Amen
David Grisham: amen
Dhondi Wiegel: amen
Lisa Costa: Amen"

Thursday 01/13 7:46pm
"As you all were praying the ventilator began to detect her breaths better and work better for her. Praise the Lord and keep on praying for baby Madeline."

Thursday 01/13 9:24pm
"Ok everyone, NOW is a great time to pray. My neighbors are watching the kids and I am off to the hospital. Please pray!!"

Thursday 01/13 10:11pm (at the hospital)
"Freaked out!! But looking good. Madeline's blood pressure has plummeted and they are trying to control it. In the background doctors are putting in a pic line. They think that her infection is now in the blood. Surely this one will be tough to beat. Please stay up late and pray with us for Madeline Grace, and for a miracle."

Friday 01/14 12:03am
"Madeline is stable now. All the lines are in. She's on the oscillator vent machine. Her CO2 is back down. She's on 3 different kinds of antibiotic. The red crash cart is parked outside her door and they're cleaning up her room. Now we watch and wait... Thank you for for all your prayers, God has really held us up through this. We'll let you know if anything changes. Sleep well, God's in charge."

Friday 01/14 8:41am
"Made it through the night. Madeline is still knocked out but stable and making small steps forward. Still no results from her blood culture, please keep praying that nothing grows back and that her body is free from infection. Thanks for your prayers and love towards Madeline."

Friday 01/14 11:09am
"Madeline just crashed again, they sort of have her stabilized but don't know what is going on."

Friday 01/14 12:15pm
"Madeline coded again! And she's stable again. With all the action it's getting so hard to stay standing. My legs just keep shaking. Please keep the prayers for Madeline coming."

Friday 01/14 9:35pm
"Well things have been quieter here since 1pm. Madeline is zonked out and stable an her parents are tired and soon to be zonked out as well. Thank you all for lifting us up on prayer through this trial. Praying for a quiet night tonight."

Wednesday, January 12, 2011

Prayers needed for Madeline tonight.

Dear friends,

Well Madeline has had a pretty rough go at it the past few days. Poor thing, she has another lung infection. I am not sure how well the steroids are gonna work for her. Steroids are like a wild card, you play it at the right time and it can really turn the tables, but you can only play that card so many times. They were working for a half a day improving her lungs but now I don’t know how the infection plays into that.

Pray for Madeline, pray, pray, pray. My poor girl looks so tired from all of this. One of the side effects of the steroids is getting wired like you’ve had too much coffee. I can see that in Madeline now, she get’s agitated more easily. Lately, when they suction her she has been bradying again and dropping her sats really low.

We met with the new neonatologist on Monday. His name is Dr. Kinsella, he is world renown in the field of poulmonology. He is real smart and has a very academic approach to the vent management and was able to explain a lot to Lisa and I. I told him we need to get Madeline off the vent and he is here for 3 weeks so let’s see what we can do.

Please pray for Madeline tonight if you can, and pray for her tomorrow and the next day. She really needs it now to help her get over this infection and the side effects of the steroids. Thank you all so much for your prayers and support. I feel our mighty God move into action when your prayers go up to Him.

Grace,
Shanker & Lisa.

Sunday, January 9, 2011

Update on Madeline

Dear friends,

Sunday is here, and along with that a lot of snow and cold. We met with a lot of doctors yesterday trying to figure out what Madeline was up to. The cardiologist came by to check her hear, they did an echo and said nothing really looked different, if it did it was only slightly better. We got the opportunity to ask a lot of questions but didn’t get any good answers.

I kept asking the pulmonary team if this had anything to do with the change they made in her vent settings about 3 days ago when this started, and their reply would always be something like “we’re going to try this..”. I am not sure how exact of a science pulmonology is but it feels like they’re just grasping at levers to try and if something doesn’t work, try a different lever.

Either way they decided to try steroids on her again. Steroids are a really effective anti-inflammatory and the hope is to really get her lungs as dilated and open as possible. If she responds well to that then they’ll try to aggressively wean her vent settings down. Last time they tried steroids on Madeline it didn’t go so well, but then that was 2 months ago and 2 lbs smaller.

Everyone here really understands now that Madeline’s only chance for survival is to get off the vent and get off as soon as possible. Without that her lungs can’t heal and if her lungs can’t heal, then the cardiac surgeons can’t operate. So I feel like they’re really working hard towards that goal.

For now, she’s doing ok. She’s not struggling or agitated, it’s just that her oxygen needs are really high and we still don’t know why. They have been able to get her down from 100 to 47 now, which is much better. Please pray that everything goes well with the steroid treatments and that we are able to wean her vent settings down over the next few days.

Sometimes I feel like I run out of ways to pray for her, but her needs are basic. Her left ventricle in her heart needs to grow bigger and her lungs need to improve so she can come off the ventilator. Thank you all again for your continued faithfulness in prayer and for sharing this burden with us. Please continue to petition God on Madeline’s behalf.

Grace,
Shanker & Lisa.

Saturday, January 8, 2011

Update - prayers needed.


Dear friends,

Madeline did better that night after I had left, and for the most part had a good evening and day. Madeline was doing well enough yesterday that Lisa got to hold her for a while today, see the attached picture. I had forgotten how blue Madeline can get, most of the time I don’t notice, but sometimes when you see a picture like this it can be a little scary.

For some reason, for the last 5 days or so Madeline’s oxygen needs have been much higher. Normally, she gets agitated from something (illness, tube placement, poopy diaper) and she needs more O’s until she gets calmer and then they can wean her back down to room air (20-21% oxygen). But for the last 5 days she has been hanging out between mid 40’s and 70% oxygen.

This morning Lisa called in to check on her and found out they had her on 100% oxygen, and her sats were still hanging out a little low. Lisa was off to the hospital in a flash and is now working with doctors to try and figure out what’s going on. We’re not sure if this a lung or heart issue or if this is another infection creeping back, or if it’s something they changed in her routine that’s causing this.

Please pray for Madeline especially today and tomorrow, that God will intervene and help her get better and that doctors and nurses would be granted the wisdom to know the right thing to do for Madeline. Pray for Lisa and I as we sort through the information and try to understand what is happening.

Grace,
Shanker & Lisa.

Thursday, January 6, 2011

Madeline's feeling kinda icky.

Dear friends,

I went to see Madeline tonight after work. I was bummed because I was excited to see her and when I got there she was just completely zonked out. I am so used to coming home and my other 3 girls jump up and down yelling “daddy” that it was hard to see Madeline not nearly so excited to see me.

They have to keep her a little sedated because as she gets older the vent tube becomes a bigger frustration for her, so they have been working to switch her to some different medication. I guess when you do that you start at a higher dose and then work your way back down to the appropriate levels. So this is what left Madeline zonked out.

They finally did her echocardiogram (echo) a couple of days ago, but no official results yet from anyone on that. The tech that did the echo said things didn’t look like they had changed one way or another. I’m still hoping and praying for good results, that’s how I tolerate this so well, keeping optimistic that God would heal Madeline.

Madeline seemed a little uncomfortable tonight, not bad, just like when you have a bad cold and all you want to do is lie in bed and watch TV or sleep – that’s kind of how she was. She was running a fever and her heart rate was high and she was kind of panting more than breathing. All I could think as I watched her try to rest is how she didn’t deserve this, and yet she has no control over it.

Please continue to pray for Madeline tonight, that she starts to feel better again real soon. Pray that the docs can figure out the right medication for her to be on. Pray that God heals her heart and lungs so she can get better and get off the ventilator and come home! They are going to do an ultrasound with dye on her kidneys tomorrow morning, pray that that goes well.

As I left the hospital, I saw a young couple come off the elevator, looking exhausted, probably wondering how they’re possibly gonna make it even a week here. Pray for that couple as you pray for us as well.

Grace,
Shanker & Lisa.

Monday, January 3, 2011

Madeline's New Year.

Dear friends,

Happy new year!! I can’t believe how time slips away so fast. Well Madeline has had some wonderful days since Christmas, absolutely amazing! For the first couple of days after Christmas she had high heart rates and a temperature. After 2 days of this they decided to check for infection and within minutes tests came back showing she had nine different kinds of lung infection and a urinary tract infection. Antibiotics started to roll.

As bad as that seems, I was really encouraged. She had a bad lung infection and only had a temp?? Normally this is the kind of thing that could kill her, but she didn’t have any crazy desats and for the most part her numbers stayed good. Two days after starting the antibiotics Madeline was wonderful. Her numbers were the best we’ve ever seen – only 2 days after the antibiotics started!! The nurses were amazed at the quick recovery she’d made.

Madeline’s body seems so much more mature now and able to handle the bumpy roads. The echo hasn’t happened yet because of her infection, but I can’t wait to see how her heart looks. They have even started weaning her off the vent, and she has been able to tolerate the lower settings quite well. I believe that God is listening to our prayers and He let us know that on Christmas day!

Madeline had a good run. The last couple of days have brought slightly higher heart rates and being a little more irritable. I am not sure if she’s getting used to new medications or if it’s the lack of her primary nurses again. She definitely seems to respond to both. They are going to do her echo today, please pray with me for good news for Madeline Grace.

Grace,
Shanker & Lisa.