Saturday, December 25, 2010

Madeline's first Christmas

Dear friends,

Last night I had the most wonderful dream. After we prayed for Madeline and went to bed I dreamt that Madeline’s vent tube was loose and that she had pulled it out. But it took the nurses some time to notice and when they finally did come in and realize what she had done they also realized that she no longer needed the vent. Then they did an echo and realized that her heart had gotten better and they did not know what to do.

It was one of those real dreams where I felt all the emotions of seeing my daughter better. I saw every step in her recovery as we met with cardiologist who could only shake their heads in disbelief of what had happened. I met all the doctors and nurses who came to see the miracle baby and watched their wonderment as Madeline engaged them with her beautiful eyes.

I wasn’t sure if it was just a crazy dream from all the sweets I had that night or if it was a vision from God of what was to come. Either way I kept waking up and praising God and thanking Him for those precious moments that I had to hold my daughter and see her well and getting ready to go home. I told God that even if He were to take Madeline that day, I was thankful for the dream.

Christmas morning came, and with it came insane abundance. Thank you all for your gifts and generosity towards my family during this season. We opened more presents than I have ever seen at once. My girls had a never ending pile of stuff to open, you are truly a rich and generous people. We had so much fun with the business of it all, but in the back of my head I knew something was going to happen today.

Then came the phone call from the hospital. Lisa answered, and a nurse explained to her that Madeline was not breathing well and in respiratory distress. She said they were going to try her on a different kind of breathing machine to buy us some time to get to the hospital and that we should hurry. I was downs in the basement with Macy when everyone began to yell for me. I grabbed my keys and phone and off we went.

I kept the accelerator close to the floorboard as we raced for the hospital, for the first time I felt like the time had come to say goodbye to my daughter and I didn’t want to miss it. Thank you all who got the message and prayed for us, I felt God’s Holy Spirit with us the whole way calming and comforting me. In pajamas we ran across the hospital to the elevator, up to the 4th floor, and down the hallway to Madeline’s room.

There were all the doctors there outside her room, and as they saw us approaching they motioned with their hands for us to calm down and that everything was under control. We came into a crowded room to see Madeline lying still with everyone standing back, arms crossed and watching her every move. They had just given her a drug to paralyze her and her sats were beginning to return to normal.

So what happened? Only the Lord knows. According to her nurse Cody, she was fine one moment and then she began to gasp for air like she couldn’t breath. She didn’t get worked up like other times, she just started gasping and her sats dropped. They turned up her air and her sats continued to drop so they turned up her air more. They had the vent settings all the way to 80, and still it was not bringing her back. She just kept fighting the vent.

That’s when they decided to paralyze her. This prevented her lungs from doing anything on their own and she was dependent on the ventilator to do the breathing for her. She came back nicely. Then we had to sit and wait and see what would happen when the paralytic drug wore off. Would she keep fighting the vent, or would she be fine.

About 90 minutes after we got there to drug began to wear off. Lisa and I comforted her and she hit some bumps along the way, she pooped, got a new diaper, and then dozed off to a deep sleep. They did and EKG and a battery of other tests and have so far come up empty handed. I wonder if this is our Christmas Miracle? I knew that if the holes in her heart closed, she would hit some pretty serious bumps along the way if she were to make it.

It was an exciting experience, a scary one, yet we could feel God comforting us and walking us through this. Seems like Madeline’s days are not over yet and I can’t wait until Tuesday’s echo to see what inside her has changed. Please keep praying for Madeline. She already is our Miracle for all the lives she’s touched near and far. Continue to pray for God to work in her life to His Glory.

Please see this video of Madeline this afternoon as she awoke from her slumber to become her normal happy self on Christmas day, what a miracle!

Grace,
Shanker & Lisa.

Thursday, December 23, 2010

Let's all pray!

Dear friends,

When he came near, Jesus asked him, “What do you want me to do for you?” “Lord, I want to see,” he replied. Jesus said to him, “Receive your sight; your faith has healed you.” Immediately he received his sight and followed Jesus, praising God. When all the people saw it, they also praised God. – Luke 18:41-43

Jesus tells this blind man that it is his faith in God that has healed him. I have asked all of you to be praying, by faith, for Madeline’s Miracle this Christmas day. I understand that God will choose to heal Madeline or not heal Madeline in His own time, for His glory. God does not need to put on a fireworks show so that people may believe in Him, but He does respond so that people may praise Him.

Tomorrow night I will be with my family on our knees, offering up prayer and petition to God for Madeline’s sake. Will you all please join me in this? I know you will be busy, but please take a few moments on your knees to ask God to heal Madeline. Specifically, the holes in her heart need to close, her left ventricle needs to grow bigger to accommodate her body, and she needs to come off the ventilator so her lungs can heal.

Please share this with your Church, offer it as a prayer request if you are going to a Christmas eve service. Share it with those you know all over. Ask everyone to bear up with my family once more for Madeline’s Miracle. Her next echo will be on Tuesday, I’m praying for a miracle, that’s the only way she’s gonna get better.

May the peace of this season surround you and your family.

Grace,
Shanker & Lisa.

Wednesday, December 22, 2010

All I want for Christmas...




Dear friends,

Well the meeting with the cardiologist went fine. There wasn’t much new information. It seemed more like she was coming to make sure we understood that there are no surgical options left for Madeline. She said that the condition with her lungs rules her out as a candidate for any surgery, and without surgery her lungs will never improve.

We knew this already. They did an echo yesterday that showed a slight shift in the pressure gradient across her PA band (the band that is restricting blood flow to her lungs). The problem with echo’s is that they’re really imprecise and they only show a moment in time. They won’t say anything until a few echo’s later if they see a trend in a particular direction. Things will either continue in the same direction, or go back to what they were, or turn left.

I asked the cardiologist if she had an idea in her head of what she thought the change in pressure was, what she would be looking for at the next echo. She said that she thought the pressure in her lungs is going up, which could be her lungs getting worse, which would lead to lung failure, followed by heart failure. I guess we’ll see.

Lisa and I asked the cardiologist if Madeline’s lungs were to improve would she then be a candidate for surgery then. She said her lungs would not improve. She kept looking at us and repeating that Madeline has no surgical options every time we asked a question with a hint of hope. I wonder if she was thinking “Poor couple, they are in shock and don’t understand me.”

We understand. We just see things differently. We joked that at least our regular cardiologist had narrowed down Madeline’s options to a miracle or a miracle. So ultimately, the next move is up to Madeline and God. We can only wait and see what happens. The next echo is on Tuesday, the halfway point between now and then is Christmas day.

If I don’t talk to you before, I hope you all have a blessed Christmas day. Please continue to pray for Madeline’s Miracle on Christmas day, this is all I really want for Christmas. By faith I know that God can heal her if He so chooses.

Grace,
Shanker & Lisa.

p.s. During our whole conversation with the cardiologist Madeline posted her best stats that she has had in over 3 weeks. She was happy and relaxed, I wonder what she knows that I don’t. ;o)

Need prayers

Dear friends,

The doctors want to meet with us, so I am heading up to the hospital now to receive what is likely to be some more bad news. Please pray for God to strengthen us as we meet with them. I am still hopeful and ask that you keep praying for Madeline’s Miracle this Christmas. If the Lord is willing, he will heal her.

Grace,
Shanker & Lisa.

Monday, December 20, 2010

Another rough day, more tests.


Dear friends,

Well Madeline certainly has had a rough day today. For the last couple of weeks her baseline heart and respiratory rate have been high with no real explanation. The docs have run all the usual tests and nothing has popped up. Also, lately when Madeline gets worked up, it really takes her a long time to calm down, and usually only with the help of some drugs.

They have changed some vent settings to see if that would help, they turned up her title volume (the size of breath it gives her) as well as the amount of time it gives her the breath (slower bigger breath). The thinking is that maybe if she is worked up and not getting the big breathes she needs, it could be what is affecting her ability to recover.

Today Madeline got really worked up over pooping, and Lisa and Jen (one of Madeline’s primary nurses) tried everything to help her calm down. Still it took over 2 hours. Then right at the end of that, Madeline checked out, just left us. It was only for about 4-5 seconds, but like a light switch she just completely turned off, and then she came back on.

She did this once more a couple moments later, and then she was fine. This really freaked out Lisa and Jen. So now all the doctors are rallied again, and we’re trying to figure out not only what happened today, but what has been happening for the last couple of weeks. Madeline continues to be a tough nut to crack. So far today, I think they have started 15 or 16 tests on her.

For now, she is wiped out and sleeping and her numbers are good. Her heart rate has settled down to 130 (high, but the lowest it’s been in a while) and her sats look good. We are all as tired as she is. Please continue to pray for Madeline, pray that the docs would be able to figure out what’s going on with her and give her the best treatment possible.

Continue to pray for Madeline’s Miracle on Christmas day. It the Lord wills, He will heal her. Pray for Lisa and I, that we can still find ways to enjoy this season with our family. Continue also to pray for Robert and Carrie’s soon-to-be baby, a son, pray for a great pregnancy and healthy child.

Some of you have asked for our address, so here it is:
Shanker & Lisa Wiegel
460 Prairie Ridge Road
Highlands Ranch, CO 80126

Attached also is the latest picture of Madeline so you can know who you’re praying for. Thank you all again for all that you do to help and support us and Madeline.

Grace,
Shanker & Lisa

Saturday, December 18, 2010

Lord, if you are willing, you can make me clean.

Dear friends,

When Jesus came down from the mountainside, large crowds followed him. A man with leprosy came and knelt before him and said, “Lord, if you are willing, you can make me clean.” Jesus reached out his hand and touched the man. “I am willing,” he said. “Be clean!” Immediately he was cleansed of his leprosy. – Matthew 8:1-3

Rather than share all that has happened since the last email, and a lot has happened, I’ll just fast forward to today and share how we’re feeling. The last few days have been bumpy for Madeline, mostly we feel due to people not paying good enough attention to her. When things are done that finally solve her woes, Lisa and I are like, “Exactly! They should have done that sooner, we knew it needed to be done”. It’s a fine line to be an advocate for Madeline while not feeling like you are stepping on the toes of highly trained medical professionals.

The doctors have seemed weird lately, their tone with us has shifted to a more hopeless outlook. They look at us to see if we’re ok and say things like “are you sure you want to go through with this?” I understand that medically there is nothing that can be done for Madeline right now, but that is a far cry from a hopeless situation. She is not a vegetable. When I hang out with her, she is completely fine, she looks at me and knows me, I can make her smile and Lisa can make her laugh. She has people she likes and people she doesn’t like, she totally has a personality.

So I don’t understand why the doctors feel this way. I don’t know if there is something they are not telling me. I don’t want to stick my head in the sand, I understand her heart and lung condition very well. All that needs to happen is for the holes in her heart to close, the left ventricle to grow bigger, and her lungs to heal and then we’re outta here. So why are they acting like there’s no hope?

Do they not understand God? If He is willing, He will heal Madeline. If He is willing, He will take Madeline to be with him and the angels in heaven. In the meantime, as long as she is comfortable and happy and has a personality, we should wait on the Lord. I remember when we first found out about her condition and the first option presented to us was to abort (but not as in abort on your computer, we’re talking about taking a life). Absolutely not! Is that what the world thinks we should do?

I felt like that was a trap from Satan, the great tempter, “Here’s a way out, disobey God, and things will get easier for you. Take, eat the fruit.” I feel the same way now, like we are being offered a way out, a way to no longer have to deal with Madeline anymore. As a father, I could never do that. As a Christian, I have learned to not disobey God and to wait on Him for deliverance. And that is exactly what we’re going to do.

Some of you have sent us messages reminding us of why we’re here and what we should be learning from this (thanks JDW & LLJ!!), and I thank you for that encouragement. We want to thank you all again for your prayers, help, care, support, gifts, generosity and kove for Madeline Grace. Please continue to pray for Madeline’s Miracle this Christmas day as we anticipate and celebrate the birth of Jesus, the greatest miracle and gift ever given, from God to man.

Amen.
Shanker & Lisa.

Wednesday, December 15, 2010

Procedure went well - still need prayers.

Dear friends,

Thank you all for your prayers. Madeline made it safely through the procedure this morning. The diagnosis was, once again, borderline. She does have floppy airways, but not near as bad as they thought. They are mostly only affected when she gets upset. The test did reveal that they will be able to wean her vent settings down some.

Still, they are not able to even guess what the long term looks like for her. They say that at six months, cartilage usually firms up a lot, and they hope to see some good change then. That’s only 2 months away for her. Please continue to pray for her miracle, that it would be our present this Christmas day, although we wouldn’t be sad if it happened sooner. Thanks again for your prayer, love, and support.

Grace,
Shanker & Lisa.

Procedure Today - Prayers Needed!

Dear friends,

The are going to do the bronc study today at 10am. This is where they go down her vent tube with a camera to see if her airways are collapsing or not. This is a risky procedure for Madeline because the camera takes up almost the whole diameter of her vent tube. The procedure should only take 10-15 minutes, as they turn down her oxygen and watch her airways.

I often wondered why Madeline was so touchy with her tube, until I realized that that is her only her access to air. If something plugs that tube, she can’t just take another breath from somewhere else. I thought of an illustration for you. Imagine you are snorkeling under water, and someone tells you to relax as they stick a camera down the only tube you have to breathe from.

PLEASE PRAY THAT HER AIRWAYS ARE FINE! I don’t even want to think about the alternative. Please continue to pray for a miracle for Madeline. Specifically, pray that the holes in her heart close, the left ventricle grows to supply her body and not back up her lungs, and that her lungs would become healthy again, and if you need a date, how about on Saturday, December 25th, 2010.

Please continue to pray for Robert and Carrie and their baby. Tessa and Abe went home to Montana with their twins Lauren and Izak – Praise God!

May the Grace of my Lord and Savior, Jesus of Nazareth, be upon all of you this season.

Grace,
Shanker & Lisa

Monday, December 13, 2010

A Bad News Day

Dear friends,

The cardiologists and the surgeons got together to discuss Madeline again today, they have narrowed Madeline’s treatment possibilities down to 2 options: 1) A Miracle and 2) A Miracle. When your doctor gives you those as his best 2 options, what do you say?

Lisa and I went out to dinner tonight thinking maybe some good food would help. The food was good, but the dinner was bad. We commiserated as Lisa shared with me all the doctors had told her. They need to do surgery on her heart, but her lungs are not well enough. They need to get her off the ventilator so her lungs can get better but her heart won’t allow it. She is a perfect catch 22.

It seems like now the right side of her heart is growing but not the left side of her heart which would mean that if sugery were possible, it would be a one ventricle repair. In a one ventricle repair, they re-plumb her heart to work of 1 atrium and 1 ventricle. There are 4 open heart surgeries that take place in stages to accomplish this. Once complete, you have a functioning heart that will wear out at some point, and then you get a heart transplant. But because of Madeline’s other problems she would not be considered for a heart transplant.

Probably the hardest news was that we would probably still be here next summer or even through the next year. Even if she could go on a home ventilator, they wouldn’t let her leave the hospital because of her heart condition. We talked about what that meant for us, and what kind of lifestyle changes are we going to need to make. That’s hard, right now we can’t even plan Christmas.

We talked a lot about Madeline and trying to make the best decisions for her. Lisa plays peek-a-boo with her and thinks she can make her laugh, but with the vent tube in all you get is a quiet smile. We talked about how much we desire Madeline to come home and daydreamed about how wonderful and normal life would be. We talked about what we would do if God decided to take Madeline to be with Him in heaven.

Madeline has been on a rocky road lately. It takes a lot to calm her down, and she is needing more ventilator support lately. She is about 5.5 lbs right now, she gains some and then loses some. She is again roughly where she was a month ago. The doctors are concerned that her heart is not allowing her to gain the weight that she needs to gain.

One big question on the table is does Madeline have collapsing airways. They have decided to go ahead with a bronc study where they go into her airways with a camera and turn down pressure on the ventilator and see if her airways collapse or remain open. This is a risky procedure for Madeline because the camera would block her airways. It should be done in the next day or so, so please pray that it goes smoothly and PRAY THAT HER AIRWAYS ARE FINE.

I know that some of you believe in miracles, and some of you may not. Please pray for one on behalf of Madeline Grace. Pray that her left ventricle continues to grow and can be used. Pray for God to give her strength to get better. Pray for Lisa and I, our faith is still strong, but our souls are getting so weak. And continue to pray for Robert and Carrie’s new baby as well, that it would turn out perfect and healthy.

In His loving grace,
Shanker & Lisa (Madeline says hi too!)

Monday, December 6, 2010

Update on Madeline Grace

Dear friends,

All is well today with Madeline, she is in the clear as far as meningitis is concerned, thank you all for your prayers about this. Madeline still has a bit of a fever but is mostly doing good. Today they took her vent tube out of her nose and moved it back to her mouth. They gave her a bunch of drugs to sedate her for this and it went smoothly. Now she is exhausted and sleeping, she just opened one eye to make sure I was still here and then dozed back off to sleep.

Yesterday someone told me they admired me for all that I’ve been through. I respectfully disagree. You don’t admire the wounded person stuck in the middle of trouble, you do admire the soldier who leaves the comfort of home to help that person. We’re just stuck in this situation, sometimes we do well, sometimes we don’t. There is nothing to admire here, just keeping our heads above water until deliverance comes.

If you want to admire something, let me give you some suggestions. I admire all the people who are not stuck where we are yet CHOOSE to be involved in our lives. I admire my sister-in-law Linda who takes the kids off our hands every day so we can be at the hospital with Madeline. I admire our parents who come to stay with us and do whatever is needed to care for us.

I admire the kindness and generosity of all our friends from church and elsewhere who give of their resources and their time to help us in whatever way they can. I admire Wayne and Becca who provided thanksgiving dinner with a turkey that we could bring to the nurses and staff of the NICU here. I admire those that have come to clean our house and help out with the kids.

I admire whoever came over last Saturday to give us a Christmas tree and decorate our house inside and out. I admire the nurses and doctors who do such a good job of caring for Madeline and the other babies here at the NICU. I admire all of you who lift us up in prayer every day and without ceasing. I admire ALL of you who, in love, choose to take our burden upon yourselves with the same weight we feel. I admire all of you.

Most of all I admire my Savior and Lord Jesus who has caused all of this to happen by being our example of Love. Thank you all so much again for all that you do. If time never ceased I would still not be able to thank all of you for what you’ve done for us. Please continue to pray for us, and pray for Madeline that someday soon we can go home.

Please pray also for Robert & Carrie, an awesome couple from church who just found out that their first baby has a 2 vessel cord. This is where it all started for us and Madeline. Ninety percent of the time a 2 vessel cord means nothing, but they have seen us go through a lot of trials since we first found out. Pray for them, pray for their new baby, that it will be a perfectly happy and healthy baby when the time comes.

Grace,
Shanker & Lisa.

How you can help the Wiegels!

Hello Friends,

Lisa here, I just wanted to follow up on the email that Shanker sent out the other day. Like he said this race has turned into a very long marathon with no end in sight. Madeline is looking better today then she has in a long time. She actually 5.5 lbs last night. But as you know by now Madeline’s trend is to make one step forward and 3 steps back. As always we continue to pray that she would continue to heal and that God’s glory would be shown through her. She is already quite a little miracle and God has used her story to touch many more lives than you could ever imagine. Thanksgiving arrived the other day and much to my surprise the emotional strain of this situation sky rocketed. Our family felt so incomplete as we indulged in the feast. And then the Christmas music started. . . God has been so good to us and has given us so much strength and peace but , wow, the Christmas season will be yet another challenge. Everyone asks how to help and so often we don’t even know what could possibly ease the strain of this crazy life other than prayer. So first and foremost, please continue to pray. I have also come up with some other ideas if anyone is interested in helping. It is hard and very humbling to continue to be in a position where we need help but here we are and these are some things you could help with:

DECK OUR HALLS!! Saturday, December 4th from 10am – 2pm stop by and help decorate our house. If you have any decorations you want to get rid of you could use them to make our house festive. Some other things that would be nice are a real Christmas tree (we will decorate it), a wreath, someone to hang our lights outside and any other festive décor. The fall leaves also need to be raked up if anyone needs a good workout. Christmas cookies are always welcome because baking just doesn’t seem to happen.

MEALS Thank you all for the meals you have provided. It helps us to feel somewhat normal and healthy to sit down and eat a home cooked meal. I have an idea to try: Because of our unpredictable schedule I think it might be helpful to have frozen meals on hand. Shanker and I are always bringing leftovers up to the hospital for lunch and dinner so even if you pack up some of your leftovers and freeze them, we would enjoy the variety. Anything I can pull out of the freezer and heat up for the family would also be great. Soups works well. We like to have Steam fresh frozen veggies on hand. I cannot eat dairy, peppers, broccoli, or lots of onions or garlic.
Another idea would be to individually wrap and freeze on the go breakfast foods for me like pumpkin bread or muffins. I eat breakfast in the car every day.

CLEANING SERVICE To help keep the sanity around the house I would like to hire a cleaning service to come in every other week to take care of the grime that builds up in the corners and to give the house a good cleaning. It is imperative that our family stay healthy and a clean house would help. I know this may seem silly, but I will take donations toward this. If anyone knows anyone who might be interested in doing this please let me know. It just needs to be a regular person who can get to know our house and how to do things.

ERRANDS Running errands just doesn’t happen and most places aren’t open around midnight when I have time. It is always worth it to give me a call if you are out and about. I’d like to figure out a good way to get the dry cleaning done.

HOUSEWORK We started a lot of projects that we hoped to get done before Madeline was born, and of course they didn’t get done. Know we have a bunch of half finished projects hanging over our heads. It ranges from tiling the fire place to hanging curtain rods, and helping Shanker and Bill build a roof over our deck which will ultimately lead to us getting a new roof so we won’t have leaks this winter.

STANLEY STEEMER really needs to visit our house.

GAS CARDS We have gone from filling up our cars 2 times a month to 5 times a month. That is a huge expense.

We can’t thank you enough for all you have done for us. I hope you all have a wonderful Christmas. Call me anytime.

Lisa and
Shanker Wiegel

Wednesday, December 1, 2010

Thanksgiving

Dear friends,

It’s been a week since I’ve updated you. I hope everyone had a wonderful thanksgiving celebration. We had a nice sit down meal at Linda’s house at noon, which was wonderful because we didn’t starve ourselves waiting until the normal afternoon time. The food was great, and with only two families it was nice and simple. There are certainly lots of things to be thankful for.

I am thankful that I got my garage cleaned out so I can park my car in it again. I am thankful for the freezer that was given to us to store Madeline’s milk in. I am thankful to all of you for your support, prayers, generosity, meals, encouragement, help around the house and with the kids, and for your love for us and for Madeline. I am mostly thankful to God for hearing our prayers and helping Madeline get better each day.

Madeline had a few dips this past week. To the nurses, that’s normal, but to us we are in awe that nearly 4 months into this and we still don’t have Madeline figured out. She is still just as close to death today as she was the day she was born. Lisa and I talked about how what started out as a race has now turned into a marathon. We still don’t know how long Madeline will be here at Children’s or what she’ll do next week.

You have all asked how you can help and our answers have always been the same: “we don’t know, just pray for Madeline.” While we still want your prayers, we have talked about some tangible ways that you might be able to help bless us. Most of our daily struggles have to do with time. I have a full time job and Lisa has to juggle Madeline’s 3 siblings and both of us want to spend time at the hospital with Madeline, so a lot of things around the house fall through the cracks.

Think about if your life got really busy, maybe you had to take on another job or something, what are things that you would appreciate help with? Meals, grocery shopping and help keeping the house clean are biggies. One idea Lisa came up with would be if someone(s) came over to decorate our house with our lights and Christmas decorations. Another is that I have this project with building a cover over our deck, and I could use some help getting it finished.

If you would like to help us and are able, we would certainly appreciate it. Please let us know and we will be glad to give you some suggestions, even if you don’t live near us. It’s a humbling thing to ask for help, but we can certainly use some, forgive us if we don’t always have a specific answer for you. Mostly I appreciate all of you being there for us, and letting us know you care for our little girl Madeline Grace.

Grace,
Shanker & Lisa