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.