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.

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.

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.

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

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.

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.