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.


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 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.

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.


Shanker & Lisa.