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.

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

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!)

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

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

Madeline is doing better..

Dear friends,

I didn’t make a really big deal out of it on Saturday because the doctors were so pessimistic and saying we’re not out of the woods yet, but Madeline’s pneumatosis problem miraculously disappeared. The pneumatosis that was so evident in several x-rays just disappeared on Saturday around 5pm. The doctors were sure that it would resurface on future x-rays and kept telling us that it just doesn’t go away like that. Finally on Sunday morning a little before church Lisa sent me a text message: “Dr. Hall says we’re out of the woods.”

So Madeline continues to get better, it’s a slow process but her tummy continues to get smaller and softer each day. They are going to keep her on antibiotics and off feeds for a week just as a precautionary measure and will start feeding her again slowly (very slowly) sometime next week. Although she’s doing better, Madeline appears uncomfortable from time to time, I think she’s just hungry and still a little gassy.

Of course as soon as I write that Madeline gets the attention of half the nurses in the unit. When there’s something she doesn’t like she can just hold her breath, drop her sats and her heart rate and start setting alarms off left and right. They had to bag her for a while to get her sats back into range. We did her cares, changed her diaper (she had peed a lot), moved her onto her left side (which she prefers) and she settled down a bit.

Lisa and I continue to fight off the last of our cold which seems to persist. I just found out that RSV (a very serious and life threatening infection for infants) is also known as the common cold in adults. Please pray for us that we can fight this off soon and get better for Madeline’s sake. Please continue to pray for Madeline that she recuperates and that we can figure out quickly what’s bothering her now.

Grace,
Shanker & Lisa.

Thoughts on Grace

Dear friends,

I was just sitting here, thinking about Grace. Do you know what grace is? Grace is unmerited undeserved favor. Grace is getting something you don’t deserve because of nothing you did. Grace is God, in love, choosing to bless you, even though you don’t deserve it. Grace is God sending his son to die on the cross for your sins while you were his enemy.

Grace also happens to be the girl next to us who is doing good and improving. Grace is also the girl across the hallway who is struggling right now to live. We gave Madeline the middle name Grace after we found out about her condition at her 20 week ultrasound. We gave her that name because we knew that we were going to ask God’s favor even though we have done nothing to deserve it.

God does love us, I am reminded of this every day. The evidence of His love for us is Grace. That He chooses to bless us when we have turned our backs on Him. That He wants only good for us, like a father who loves his child. We should all be praying for Grace.

Shanker & Lisa.

Sweet & Sour

Dear friends,

Today is a mix, both sweet and sour. As I sit in the waiting room typing this email, an aunt sits before me crying and trying to make phone calls to tell family members that Grace is not going to make it while in from the atrium comes beautiful music from a harp and cello. Can you imagine? Crying in front, beautiful music from behind, both ends of emotion swirling in one room.

Your prayers have been effective, and God has been good. At 5pm yesterday, Madeline’s next xray came back with the diagnosis “distended bowel, without pneumatosis”. The doctors aren’t sure about this diagnosis because pneumatosis doesn’t just disappear like that. Some don’t believe it and say it’s still there, others think that maybe it never existed.

I want to rejoice, and yet we’re not out of the woods. Madeline’s intestines are still really dilated and gassy and she’s not moving much through. The surgeons say she’s still at risk for a perforation and are watching her closely. Madeline has had some milestones, her temp is back down to normal, her blood gas is good, she’s back on normal vent settings, and she has pooped twice. Poop is what we’re really excited about!!

We’re still taking it hour by hour with xrays and close observation, we’re lucky we still have her. Please continue to pray for Madeline’s recovery and that she can avoid surgery. Pray also for Grace, that God, if he chooses to, would save her life, if not, pray that God would welcome her in heaven and comfort dearly her family, especially her mom and dad. I will let them know we are all praying for them.

Grace,
Shanker & Lisa (funny how I always mention her in closing)

No news yet, talk of other babies.

Dear friends,

Madeline Grace is still in the fence. The next x-ray looked worse. The x-ray after that looked unchanged from the previous one. We are all watching and waiting. The surgeons continue to visit her about every 90 minutes to discuss any change in her condition, unfortunately & fortunately there is none. One highlight is that Madeline did pee, which is a good sign her kidneys are working fine.

While I wait, let me tell you about other babies around us in the NICU here at Children’s. Next door to us there is Grace. She has been here a little over a month and is stable but slow to gain weight. Across the hall is Angel, a young boy who is new to the NICU. He seems to be doing well.

On the other side of us is Able. Able came here a month ago on a bypass machine and with more syringe pumps than you could count. He wasn’t expected to make it. I began praying for him the day he got here, because you can’t ignore the bypass machine, it sounds like a commercial washing machine stuck on the spin cycle.

Today Able is a month old and has a new name, “Miracle Baby”. He is good and stable and being weaned off his vent. I think some people call him “Miracle Baby” maybe chalking it up to the wonders of modern medicine and the resiliency of babies today. I do believe that God intervened in Able’s life and performed that miracle which allows him to be alive today.

Across from us, next to Angel, is another Grace. She just got here this morning and has something wrong with her metabolism. I spent some time today talking with her older brother and grandmother, I told them I had noticed Grace and had been praying for her since she got here. Her mom is still at University Hospital where she delivered awaiting discharge. Grandma and brother left a little bit ago, grandmother came up to me, tears in her eyes, and told me that Grace isn’t going to make it. I told her that I would keep praying for Grace, and we’ll just see about that.

Add it up, there is Madeline Grace, two other Grace’s, and Able and an Angel all at the end of our hallway. What great company! I talked with Tessa today. She thinks Lauren might be discharged near the end of next week which means their whole family gets to go home to Montana. God is so good to us. Please continue to pray vigilantly for Madeline Grace, and the other babies here.

Grace,
Shanker & Lisa.

Good news, and then bad news

Dear friends,

I was writing to you to let you know that the conversation with the Cardiologists went well. There wasn’t good news or bad news. They are glad that they did not do the surgery, as they are not sure that her left ventricle is big enough. They think it’s big enough, but marginally. They got good numbers suggesting that the left side of the heart is happy at least and that the pulmonary band is doing a good job of restricting her blood flow. They had decided to increase her feeds and calories, and yesterday in honor of her sister Molly’s 5th birthday she hit 5 lbs.

Unfortunately my daughter doesn’t give me much time to celebrate good news before more bad news comes along. Lisa and I have a cold and have not visited the hospital for 2 days keeping in touch often with doctors and nurses via cell phone. Last night when I was talking to the nurse she told me Madeline’s heart rate was 180 and asked if that was normal for her. I told her it certainly wasn’t, her normal rate is 137-140. The nurse called back at 1am to tell us that Madeline had a distended belly and that an xray of her abdomen showed signs of pneumatosis.

Let me explain this new term. Pneumatosis is the presence of gas bubbles in the walls of the intestines. This can be caused (most likely in her case) by poor blood profusion to the gut and/or too much feeding. The intestines aren’t able to properly digest, and get dilated which causes less blood to get to them and worsens the problem which can ultimately end in Necrotizing Enterocolitis (NEC) or tissue death in the intestines. Yes, it is as bad as it sounds. Sometimes antibiotics can take care of the problem, other times surgery is required.

This isn’t really a new problem for Madeline. Although she hasn’t had it before, being premature and a cardiac patient has put her at risk for this since she’s been born. There have been times where they suspected this and took every precaution and avoided it each time.

The nurse called us again at 4am to tell us there was definitely Pneumatosis, and they had stopped her feeding and started her on fluids, antibiotics, and pain medication. If the situation got worse, they had surgery room scheduled for 6:30am and a surgical team on standby. The would open her abdomen and remove portions of her intestine that were infected and stitch the rest back together. Lisa left for the hospital. Linda came over to watch the kids and I got here shortly after.

Dr. Barry (the top dog for the last 3 weeks) came in this morning. Briefed by everyone, he came into the room, stroked Madeline’s head for a while, turned and whispered: “Dammit”. All those that have been working with Madeline are upset about this. We’re all asking the question: “Could this have been prevented?” The xray they just took showed no change, it’s not getting better yet, but it’s not getting worse. The surgical team came by to see her again, they are ready at a moment’s notice. For now there is nothing we can do but wait and see if Madeline can start getting that gas out of her intestines.

Please pray for Madeline, pray that she can work all this gas out and return to normal. Pray that the antibiotics will work for her and that surgery can be avoided. Pray that God would heal not just this, but her whole body so we can start talking recovery. Pray for Lisa and I as we bear under this new obstacle.

Grace,
Shanker & Lisa.

Madeline made it through her procedure well.

Dear friends,

Yesterday Madeline had her catherization procedure and it went well. The process lasted about 5 hours while they sent probes up from her legs, one in an arterial line and one in a venous line to check her out. They did some ballooning in her aorta to widen out a narrowing. They released a contrast dye in various parts of her heart and took xrays to see how her heart is working. They used a pressure probe and were able to get lots of good data but unfortunately no answers for us, only more questions.

They have, once again, circled back around to her left ventricle and whether or not it is sufficient for her. I really want that left ventricle to be big enough. If it is, that means they can repair the holes in her heart and we can go home. If not, there is a whole string of sugeries, ending at some point with a heart transplant. I don’t want Madeline to have to go through this.

With all the stress on Lisa and I, I forget sometimes to look at things from Madeline’s perspective. She awoke from her anesthesia, for the third time in 2 months, with her breathing tube now going in through her nose (it almost looks like it couldn’t fit), and she had this groggy look on her face like: “What the heck?!”. Although she can’t speak or cry, she can sometimes show us by her numbers (desat’s) or by turning dark purple when she doesn’t like something. I really hope she’s tolerating all this well, it would hurt me if she wasn’t.

Michael’s parents had told me about a little girl next to them in the Cardiac ICU. Her name is Lola (Lauren, I thought you’d might want to adopt this girl in prayer). On Weds night last week, Lola coded in the middle of the night and it took the doctors 30 minutes to revive her. I have been praying for Lola, since then. Today, while waiting on the third floor (cardiac) waiting room, we met Michelle and Rich, who turned out to be Lola’s parents. I told them we had been praying for their daughter. Lola is doing better now, but needs another heart surgery at the end of this week before she can be sent home. Please pray for them.

And now we have to meet with the cardiologists again, today at 1pm, to discuss their findings. I fear it will be bad news based on our discussion with the docs last night. Please pray for good news, pray for news that will show us the path to recovery. Pray that we might have more time to let her grow and her left ventricle develop more before Madeline has to go through another surgery.

Grace,
Shanker & Lisa.

What another day?!?

Dear friends,

A couple of nights ago as I wrote to you, I felt very near to the end of my rope. Then later in the evening, I found out that a friend from church took his own life. My knees gave out and I toppled, I couldn’t pull myself off the floor for a while. Lisa and I took turns crying, not only with the news of David’s passing, but also from the stress of all that’s going on.

This whole process produces momentary stresses as things happen with Madeline or work or some other part of our crazy life, and then there is this other more constant pressure that doesn’t go away. You’re less aware of the later, until something small happens, which pushes you over the edge. That’s what most of yesterday was, keeping busy, and trying to keep it together. Sometimes succeeding, sometimes failing.

And now more news. The doctors have been meeting to discuss Madeline, and have now come to us – Madeline’s going to heart surgery real soon. She hasn’t been growing, she’s showing no sign of getting off the ventilator, she’s at constant risk for infection from the vent tube, and she’s having these desats and heart arythmias that have been worse lately.

The doctors seem confident in being able to repair her heart, but everyone is nervous about Madeline’s ability to tolerate the surgery. Her size, weight, and lungs are all to her disadvantage right now. The doctors feel that now is her golden hour and things could be worse if they wait. We were hoping to sit tight and let Madeline grow and get healthier, but that just isn’t happening.

The plan is to do a catherization on Monday to go in with a camera and inspect things. They may do some ballooning to open up some vessels if needed. Depending on what they see and how Madeline tolerates that, they will perform the heart surgery in the next few days. The will put her on a bypass machine, lower her body temperature, and stop her heart.

Will the surgery work? That is the big question that none of the doctors can answer. There is still some debate about the size of her left ventricle and it’s ability to push enough blood out to the body. If it can’t, blood will back up into her lungs and she’ll have to go into an emergency surgery to change her heart to a 1 ventricle repair. Chances of getting through that second surgery go down a lot.

Your prayers and God’s grace have been what keep us going. When in these moments, we are able to appeal to God, and let you know, and you make the same pleas on our behalf. And then what happens is best described by a David Crowder song:

“When all of a sudden,
I am unaware of these afflictions eclipsed by glory,
And I realize just how beautiful You are,
And how great Your affections are for me.

And oh, how He loves us,
Oh how He loves us,
How He loves us all”

How good it is to be loved by God so much, to be blessed by Him. I have 3 beautiful girls at home, and an amazing wife, and I have been able to support my family. Linda, Lisa’s sister, has been taking care of our kids daily without a break. Our family has helped to watch our children and take care of things around the house. Our church has faithfully prayed for us, brought us food, and cleaned our house. There is not a need we have that God hasn’t supplied, praise Him.

Please pray for Madeline once more. Pray that she is ready for this that her body and heart are ready for the task. Pray most of all that this will be the fix for her, that we can finally be on the road to recovery. Pray for Lisa and I in the coming days, for strength and peace to withstand whatever comes. Michael is doing good, please pray for his continued recovery. Pray for David’s family and close friends.

Grace,
Shanker & Lisa.

What a day?!?!

Dear friends,

First of all, thank you for your prayers and support. Madeline made it fine through her procedure. They decided not to do the scope given all that Madeline had been through in the last couple of days. We won’t have official results until later but Lisa and her nurse said it looked like the placation of her diaphragm had not worked, as her left diaphragm would rise into the chest cavity as her right diaphragm pulled down.

At first this may sound like bad news. Or it could be good news, but explaining the breathing problems she is experiencing whenever they try to turn down the pressure support on her vent settings. That might mean that her airways are fine and we still have to deal with the diaphragm issue.

Michael made it through his surgery today, seems all went well. Thank you to all who prayed fervently for him. The surgeons went in to fix the mitral valve defect but did not find any defect once they went it - praise God for that answered prayer!! Michael is now in recovery in the Cardiac ICU, but anytime after a heart surgery like that the next 48 hours are SCARY. Although he will be getting the best attention and care in the hospital, please pray for God to send an angel to watch over him.

I got a great chance to meet with Kate and Chris and their family members and friends from church and pray with them. We shared stories and had a good time as we awaited updates from Michael. All the same, it was hard being back in the same waiting room we had once been in. I was painfully aware of other families waiting for news. My heart tore right down the middle as I watched Dr. Jaggers (our surgeon) deliver news to a family that they did not want.

Lisa came down for a few minutes to be with all of us. When Lisa returned back to Madeline, she found all of the doctors in the unit back in Madeline’s room – she had another one of her episodes. These new ones seem to be caused by a heart arythmia which first slows her heart and then her sats plummet. The were able to catch part of it on an EKG machine and were discussing amongst themselves what had happened.

We’re not really sure either, but it feels like we’re back at square 1. There is a renewed effort from many docs and teams again on Madeline’s behalf. No one really knows what has been causing these problems lately but they are working hard to find out. Lisa made the mistake of asking the cardiologists: “ How many times can a baby this small have these big desats and be bagged or resuscitated from without any permanent harm?” The answer: “Honestly we don’t know, each one could be her last.”

Work has thrown a couple of real nasty curve balls at us today as well. I find myself stressed out beyond belief. As I write this, recounting the day, I wish it would have ended much sooner than it has. Lisa is going to spend the night at the hospital again tonight, to be with Madeline more and try to figure out what her triggers are. I feel like we need some real turbo charged prayers tonight.

Please continue to pray for Michael as he recovers from surgery. Pray for Madeline, pray that God might intervene and get her over the hump so we can finally start talking about a road to recovery, and a road to home. Pray for Lisa and I and for Michaels family and the family that lost their child today, that God’s peace would be with all of us.

Grace,
Shanker & Lisa.

2 Big Prayer Requests

2 big prayer requests this morning.

Baby Michael (Kate & Chris’s son whom we met earlier at Childrens) is in the middle of open heart surgery. This surgery was originally planned to be much later but because of his increasing blood pressure they had to move to surgery quickly. The will be fixing a narrowing in his aorta and hopefully fixing the mitral valve. This all means that you should pray, and pray hard for him to have the strength to get through this surgery. Pray for the doctors and his family as well.

Madeline is having a diaphragm study, where they will let her breath on her own and take multiple xrays of her lungs and diaphragm to see how well its working. This is a basic procedure, but given Madeline’s condition, it is now very risky. Madeline had a rough night with two big desats. This time her heart dropped first, followed then by the desat. Cardiologists are now trying to figure out the cause.


Thank you for your prayers, peace be with you.
Shanker & Lisa.

I am running out of titles...

Dear friends,

Hope you all had a good start to your weekend, it was a beautiful Saturday here in Denver. Someone remarked to me a few days ago that it seemed that Madeline’s struggle was no longer life and death, but that she was just trying to grow and get stronger. Oh how I wish that were true.

Madeline was supposed to get her vent tube out on Friday (yesterday) but that has been delayed. Thursday night she had, yet again, a new nurse who didn’t know our little girl very well. While suctioning out Madeline’s vent tube, her stats began to drop, prompting her nurse to bag her. The bagging didn’t go so well and Madeline’s heart stopped.

This is hard… With chest compressions and more bagging they were able to bring her back and get her stable and snuggled back in. Some of this extra commotion along with the steroids she is on, has caused some extra fluid to build up in her lungs. They are going to try and get that down and maybe address removing the vent tube again in a few more weeks.

When I got here tonight she had a lot of water in her vent tube (from the humidifier). There was so much water that occasionally enough air got behind the water to push a wave up the tube and near to her mouth. I went out into the hallway to get a nurse, no nurses.

I grabbed a nurse from next door and told her about the problem, she came in and hastily disconnected her tubes, shook the water out on the floor, and reconnected her. With that, Madeline brady’d, dropping her heart rated down into the 30’s and her sats plummeted with it. Madeline’s nurse (another new one) came cruising in, alerted to the alarms, suctioned some fluid from her lungs, turned up her oxygen, and slowly Madeline came back around.

How I wish she were no longer in danger. It’s amazing to me the really fine line that Madeline is walking. Madeline is right around 1.95Kg, or about 4.3lbs now. She was over 2 Kg before her last surgery and has been gaining and losing each day and is roughly where she was 2 weeks ago. Madeline has seemed uneasy and uncomfortable for the last few days. Lisa thinks it’s related to her diet and the Enfamil and had a long.

The change out with all the new doctors is a real struggle for us this time. Lisa is doing a great job of sharing her concerns with the doctors and learning to trust her instincts and speak up more about Madeline’s care. Still, it’s hard at this junction to form new relationships and to learn to trust new doctors. Please pray a lot for this, pray that the new docs can quickly learn about Madeline and how she operates.

Pray for Madeline, she is supposed to be gaining about 70 grams a day, and hasn’t really gained anything in 2 weeks. Pray for her lungs to improve to the point she can be removed from the ventilator. Pray for her to stay healthy and be strong. Pray for Lisa and I, that God would supply us with what we need to see this through.

Light at the end of the tunnel. Yesterday there was a news crew and photographers here. 3 moms who met here in the NICU 1 year ago, who had sons with heart defects had returned on the weekend of their first birthday to deliver 1,000 blankets and show off 3 happy, healthy, baby boys. And Tessa’s son, Izak, has been released. His twin sister Lauren will still be here for a while, so his family can’t return to Montana quite yet, but for now, they can cruise around town with one baby in the stroller, and that makes me happy.

Grace,
Shanker & Lisa.

New week, new doctors.

Hi friends,

Madeline has done well since the surgery. Like the Dow, she has had her ups and downs but seems to be making some gains in her weight. She is hovering right around 4lbs now. Thank you all again for continued prayers and support, I know this has been a long journey for all of you and we really appreciate you hanging in here with us.

This week brings all new doctors and specialists, and it has been a little hard on us and a little harder on Madeline. Although the medical info gets passed along to the new crew, some things seem to fall in the cracks. Different decisions get made, sometimes hastily it feels, and Lisa and I are struggling to communicate with everyone all that we know of our little daughter. Things like how she, like her sisters, is intolerant to milk protein, and she tends to desat a lot when she has a wet or poopy diaper.

Sometimes we come in to find that she has been given Ativan, yet again, to help her calm down, when all she needed was a fresh diaper and some attention. Lisa had a good talk with the new doc today, she said he did a good job of listening to her. He feels they will be extubating (removing her ventilator tube) by the end of this week. This feels very optimistic and almost cowboy like. Given Madeline’s track record, I wasn’t expecting it this soon. However, if she is ready, I am excited and can’t wait to get that tube out.

Please pray for Madeline that she starts gaining weight again, between her gaining and losing weight, she is where she was roughly 2 weeks ago. Also pray that Madeline is ready soon to come off the ventilator. I am both scared and excited for this moment. I wonder if she’ll cry, what will it sound like? I can’t wait to hear her voice, we haven’t heard her since she was born. Please pray for Lisa and I as we continue to bear under the stress of all of this and work a job and take care of our other three kids.

Grace,
Shanker & Lisa.

Surgery done

Dear friends,

Thank you so much for your prayers, and sorry for the delay in getting back to you. Madeline made It through surgery fine. They were able to do the surgery lapriscopically through 3 small incisions on her abdomen. She was pretty much out of it for a day and a half after the surgery with lots of bumps in the road.

And then last night she just awoke, and she was happier, and cuter, and healthier looking than she has ever been. I spent a long time just with her bedside talking to her and telling her stories and smiling at her. She was just so awake and alert. She is doing good, she had lost some weight during this time bet hopefully will be back on the road to gaining again soon.

Thanks again for all the prayers, emails, cards, and support. We really feel it all from you and appreciate every last drop, so again, thank you.

Grace,
Shanker & Lisa

Surgery on Monday!

Hi all,

Hope you had a good weekend. I can’t believe that I haven’t updated anything in a week. Some moments it feels like the week was long, others makes the week seem like it passed in a flash. There were a lot of news, no news, news, no news ups and downs. Madeline is doing mostly well now that they have her lung infection on the run and her back on her diuretics.

Seems like mostly they just got behind the ball with her diuretics and her lung infection last week and that’s what caused most of her ups and downs. Now for what happened this week. We had an MRI scheduled which got pushed back a few times. Finally after the MRI was completed we waited for results that they told us wouldn’t come for a week or two and finally came the next day.

Madeline’s heart looks ok, the left side is still small, but growing and adequate they feel for her. There are still 3 holes in her heart, two in the bottom of her heart between the left and right ventricles and 1 larger hold in the top of her heart between the left and right atrium. The pulmonary band is doing its’ job of restricting blood flow to the lungs and encouraging more flow out to the body.

The main problem now is the hole between her atria. It’s letting too much blood across and back into the lungs. She also has a paralyzed left side of her diaphragm which isn’t allowing her lung to fully inflate and this has it partially collapsing. The surgery on Monday will be to placate the diaphragm (sort of pleat it and tie it together) so it stays down and doesn’t flop around.

The diaphragm muscle is fine, it’s just the nerve controlling it isn’t working right. They expect that nerve to fix itself over time and for Madeline to regain full function in her diaphragm. They have decided to do this ahead of the heart surgery with the hopes of getting her lungs in as best a shape as they can so she’ll have a better chance of surviving the heart surgery.

They will also insert a g-tube (which sounds cooler than gastrointestinal tube). This is for feeding her, it goes right through the skin to her stomach rather that the nose tube she currently has. They don’t really think she’ll need it long term, it’s just better to get it in now while she is already getting surgery rather than have to do another surgery later if they need it.

The surgery is scheduled for 10:15 tomorrow morning. Although it sounds simple, this is major surgery for Madeline and will have a certain amount of risk associated with it, and like good parents, we are scared. Please pray for the surgeons working with her, pray for a successful and minimally invasive surgery. Pray that Madeline tolerates it well and recovers quickly. We’ll try to keep you updated as things progress.

Grace,
Shanker & Lisa.

Madeline update

Dear friends,

What a whirlwind of a weekend. I ended up getting sick anyways, despite having stayed away from home. Thank the Lord it was just a quick bug. The show went well this weekend, a special thanks to all who attended and helped out. We were all tired I’m sure, but we had some fun. Nothing like great wine, great music, and great friends to hang out with.

I haven’t seen Madeline for 2 days, which is how long I have to stay away when I’ve been sick. I’ve really missed her, it was good just to sit with her and look into her big eyes and talk to her and tell her stories about her sisters until she dozed off to sleep.

Madeline was briefly scheduled to have surgery on Monday morning for her diaphragm, but her heart surgeon doesn’t think that will fix anything. The problem still is that she has 3 holes in her heart and blood is not flowing correctly out to her body and lungs as a result. He (the surgeon) thinks that the better fix will be to repair her heart requiring open heart surgery on a bypass machine.

Needless to say, the thought terrifies me. It’s another one of those things where it’s best to wait until she gets bigger, but can she wait that long. They will be having a conference on Monday to discuss her case. Please pray for good discussion and that the doctors and surgeons can come up with the best plan for Madeline that will help her get better and go home.

Most of the time Madeline does fine. She still does have her desat episodes from time to time. Although they are not more frequent, they can be more severe these days. Madeline is growing though, she is getting ready to pass the 4lb mark!! Praise the Lord. Please pray for Madeline as the docs talk about her. Pray that her body continues to get stronger and stronger each day.

Grace,
Shanker & Lisa.

Everyone's having desats

Dear friends,

It has been a rough few days. Lisa got sick and the 3 other girls have followed, Lisa described our home as “puke city”. Madeline has another lung infection now, which is making it a little more difficult for her to exchange oxygen leading to more (and deeper desat episodes). Some of these are accompanied with dangerous drops in her heart rate as well.

Seems likely that Madeline will have surgery soon on her partially paralyzed diaphragm, although there still is no plan as to who will do it or when will it get done. The ventilator is doing a good job of keeping her lungs fully inflated so the desat episodes are not likely a result of her diaphragm not working, but rather a result of decreased use of diuretics (they throw her sodium levels off) and her new lung infection which is getting her congested.

And to add to all of this we have a big audio show this weekend. We have been real busy and preparations are under way to get everything in order for the weekend long show and the two after show parties we are having at Soundings. Every year I feel we are not quite prepared for the show, and this year, with Madeline, I feel even less prepared.

This morning Lisa was here as Madeline had a desat episode accompanied by drop in heart rate. Madeline’s heart rate dropped to 40, her saturation levels dropped down to 40’s, she was blue. Lisa tolerated it very well considering she was crying. Sara bagged Madeline back using quick short breathes, long breaths with the bag only cause her stats to plummet.

A short while ago a respiratory tech came in with some tubing and said “did they tell you about the nebulizer medicine we are going to give her?”. I said no, he said they had confirmed the lung infection and he had some medicine he would administer through her vent tube and bagging. Madeline was sleeping peacefully and hadn’t desatted at all since the morning. He hooked up the tubing, turned on air to the bag, and began long slow bagging.

I watched as Madeline’s sats dropped from 85 down to the high 20’s and her heart rate dropped from 140 down to the high 30’s. I wanted to yell, but he was a trained professional, and before I could Sara was already in the room. “What are you doing?” she asked, and then she quickly instructed the RT on the proper bagging method for Madeline and slowly she came back around.

This was my limit…the point that I just curled up and cried for a while. I am amazed how strong God has made us in the face of all of this, but this was a little more than I could do. Sara came in with some tissue and ice water and we talked. She is amazing, she has such a calming effect, not only with Lisa and I but also with Madeline. I am worried about what would happen to Madeline if Sara were not around.

I am now forbidden to go home on account of sick kids, so I’m gonna spend the night at the hospital. Somehow I have to get home, changed, and back to the audio show for last minute setup early in the morning. Please pray a lot for Madeline and all of us, we really need it now to get through the weekend. Pray also for Michael, he is back here for a procedure to balloon his aorta. Pray that goes well. And as Molly prays every night, pray for all the mommies and babies to be healthy.

In the strength of Jesus,
Shanker & Lisa.

More prayers needed.

Dear friends,

More prayers are needed once again for Madeline Grace. She’s hit some rough patches on Saturday night and Sunday where her sats (blood oxygen levels) drop low. Normally she has these desat episodes and recovers quickly on her own with little or no adjustment to her vent settings. But these ones went lower and took her longer to recover, on a couple of occasions the nurses had to bag her to bring her out of it. Also, her heart has been dropping real low with some of these.

Madeline is riding a fine line between having her lungs oversaturated with blood and insufficient weight gain as a result of the diuretics. The docs are thinking they need to go ahead with the surgery to fix her paralyzed diaphragm. They are working on getting the cardiologists, pulmonologists, and the surgical teams together to discuss her case and come up with a plan, but it sounds like another surgery is in Madeline’s near future. I am not looking forward to it.

Tonight I was holding Madeline’s little hand as she was trying to fall asleep. She was crying a little as kids often do when falling asleep. As I held her fingers and gazed into her eyes, it hit me - This Friday she’ll be two months old, and still I don’t even know what she sounds like. Asides from a couple of little sounds, I haven’t heard Madeline, her vent tube prevents her from this. Maybe it was culmative, but it really hit me hard tonight. I really want her to get off the ventilator so I can hear her, even if all she does is scream and cry.

Another small boy passed away here on Sunday.

Please pray for Madeline, pray for a miracle to occur, I’m ready for this, I think she is too. Pray for her health, that she can grow and become strong. Pray that if the surgery must happen, that it goes very well. Pray for Lisa and I, that we can always find comfort and peace in the arms of Jesus in whatever happens. Pray for the family of that little boy, that they would be comforted.

Grace,
Shanker & Lisa.

Praise God - good news for Anabella

Tears…of Joy. God is amazing. Read below..

From Anabella’s Aunt:
“Shanker,
I wanted to let you know that due to all the wonderful prayers, Annabella got to go home today. I fully believe the recovery started last Saturday. While Adam was holding Bella he was singing hyms to her and praying. Not long after you left she woke up and looked at him and asked for mama. She wasn't happy until my sister was back in the room holding her. From there she started recovering and surpassed the doctors expectations for her recovery. She began to use her left side, talk, and even walk! She is still weak and needs to be watched closely, but she wasn't expected to walk or recover this quickly. Thank you so much for your prayers and for those of all your friends. Keep the faith. God has a plan for Madeline just as He does for Bella. Madeline will grow, I know it. Maybe Adam should go in and sing hyms to her. Thanks for the update and know that you are all in our prayers.
Amy”
Grace,
Shanker.

No title

Dear friends,

Madeline is mostly doing good. It’s hard to assimilate all the news, if you look at it minute by minute there is a lot of good news and a lot of bad news and urgently needed prayers. It kinda looks like the DJIA. But if you average it out, it’s mostly slow progress and favorable news. Some days Madeline gains weight, and then other days she loses it all again.

The doctors are still trying to find the right combination of medication, feeds, diuretics, and additives in order to get her stable so she can grow more effectively. Please pray for Madeline, that she DOES grow and gets healthier with each passing day. Whenver I see her, she seems like such a normal child for her age, smiling, crying, pooping, and sleeping. She recognizes mom and dad well and has her favorite nurses.

God has been so good to us. When I think about what we’re going through, I praise God that we can still stand, that I still have a job, that things still get done around the house, and that my other 3 girls are still cared for. Thanks again to all who have shared this burden with us by serving us and praying for us. I still find it amazing how many things Lisa and I have not been able to get around to that have just been taken care of, we are so blessed.

Please continue to pray for Lisa and I, for strength and energy each and every day. Pray that we can lean on God to get us through this no matter what happens. Pray for Soundings, business is slow to pick up after the summer and it’s time to start paying more bills (yikes!), pray for an abundance of business to come our way.

On another note, just found out that Kate and Chris and baby Michael will be rejoining us soon here at Children’s. Michael needs another procedure related to his heart done. Call me sick but it will be nice to hang out with them again, although I am certain this is the last place on earth they want to be. Pray for Michael, that the procedure goes extremely well for him.

Grace,
Shanker & Lisa

Another day, more news.

Dear friends,

One more week brings a bevy of news and decisions. Madeline has mostly been doing well, Thursday they pulled her pic line (an IV line that goes up her arm and into her heart) leaving her without any IV lines for the first time in her life since being born. The pic line had required her right arm to be taped to a splint since birth, so the most exciting part was watching Madeline realize she had two of these arm and hand thingies.

They were talking about taking her off the ventilator sometime next week. But then they found something in an x-ray that turned into an MRI and the results were that she has a partially paralyzed diaphragm which is preventing the left lobe of her lung from fully inflating and it is now partially collapsed. No one is sure what caused this but a likely culprit is the ventilator itself.

So a new surgery is required to “tack down” the paralyzed “floppy” part of the diaphragm allowing the rest of the diaphragm to be more effective. They obviously don’t want to do the surgery until she gets bigger, and at the same time they want her off the ventilator. However, the ventilator is necessary until they do the surgery, and so goes most of Madeline’s decisions: “rock” or “hard place”.

Going back to my feeling stranded out on a rock analogy. Now the worst of the storm seems over, the waves are not splashing up on us, the wind has calmed, but still we can’t get off this rock. We just have to stay put for a while. It sometimes feels easier to be in this situation when we’re both feet in living here. The hard part for me is managing a job, being a dad, and keeping house along with being with Madeline at the hospital.

While I’m up on this rock, I still see others everyday, stranded up on their rocks. One of them is 4yr old Anabella Grace. Please pray for her, Anabella is the niece of a friend from Church. She had a couple of seizures and hasn’t really recovered from them. She is now staying here at Childrens in the ICU with a brain infection. Doctors are working hard to figure out what kind of infection it is and how to treat it. Pray for Anabella, pray for her parents.

Please keep praying for Madeline as well. Pray for the doctors meeting on Monday to discuss her again and an upcoming surgery. Pray that her life would be spared and her health continue to improve. Pray for that day, when she will be healthy and home playing with Mom and Dad and her three sisters.

Grace,
Shanker & Lisa.

From a race to a marathon

Dear friends,

Thanks for the inquiries about Madeline, it has been a while since I updated everyone. Madeline is doing good, she still has her ups and downs from day to day, most of these things seeming insignificant at this point. She goes up on her feeds, does well for a while, and then her numbers start going all over the place, they stop feeding her, start running tests, figure out the problem, solve it, and then start feeding her again. It’s mostly been some variation of this for the past week. The genetics fish test came back on Friday, but no Geneticists have come by to discuss the results yet.

Six weeks, that’s how old Madeline will be tomorrow. Sometimes it feels like she was born yesterday, sometimes it feels much longer than the 6 weeks that it has been. What once felt like a mad race how now turned into a marathon. There’s a lot less ups and downs going on from day to day and Lisa and I and the girls are settling down into a routine. My parents are in town now and plan to stay for a while and help out.

God has been so good to us through this. He has been faithful to hear our prayers and comfort our hearts. I see some of what He is doing through this, I have so much more to see. Some time ago I posted a song from Josh Wilson called “Before the morning”. Sometimes the lyrics in music see so poignant to our lives, this one song really seemed to speak to us, like he understood what we were going through…and he did! Lisa’s sister Linda called and told me that Josh Wilson had friends who had a baby with HLHS (Hypoplastic Left Heart Syndrome – Madeline’s original diagnosis), and their lives and faith and what they were going through was the inspiration for the song. So please listen to it again.

On YouTube:
http://www.youtube.com/watch?v=8qG1ThtgguE

The inspiration for the song:
http://www.youtube.com/watch?v=uPfzV3ktAPY

Meanwhile, please keep us in your prayers. Please keep praying for Madeline’s continued growth and health. Pray that God would continue to heal and strengthen her. Pray that God would heal her broken heart. Pray for that day when we can bring her home. Pray for Lisa and I, for strength and endurance, and for faith to trust in God who is mighty and merciful and good to all.

Grace,
Shanker & Lisa.

The really long post

Dear friends,

Well I certainly have a lot to say today. I have been trying to find a way to break it off in small chunks and give you a steady diet, but the information just doesn’t come that way and I don’t want to delay in getting any of it out. So, I apologize in advance for the length of this note and I would encourage you, if you aren’t able to read all of it, just to skip all the way to the bottom past all of my groaning, and get to the important prayer requests and acts of selflessness.

Madeline is doing good today, mostly being uneventful. The new neonatologist, Dr. Cassidy Delaney, came by and got caught up with Lisa earlier today. We’ll be seeing her for the next few weeks until the next rotation. I missed Lisa at the hospital and came into the room to find some new photocopied information on 9qSTDS. The information was from a small support group of known cases sort of describing the possible ranges of symptoms that can occur. I picked it up and began to read.

The symptoms, even within this group, vary wildly. One moment I am reading about fully dependent 19 year old who have gone downhill since 16 and has no social skills, the next moment I am reading about normal children whose behavior and symptoms are identical to my 3 year old, Miranda and I think, this isn’t so bad. As I read about seizures requiring constant medication , sudden death, 14 year olds who can’t handle stairs by themselves, my feelings began to border somewhere between despair and anger. How can this happen to me? Then I think, how selfish am I. Who am I to think that somehow I am better than other parents who have to live with this. I am no better than they, if anything, they are better than I.

When the nurse came in, I asked her about the booklet. I asked her if it meant that Madeline had been diagnosed. She said the confirmatory test had not come back yet and that she had copied the booklet for us. She thought it might be helpful for us to know what to expect, you know, the more information the better, right? I am not so sure about that. This information scares me. Is all this worrying for naught, I mean Madeline hasn’t even been diagnosed yet. Why am I even reading it? Even if Madeline does get diagnosed there is still such a range in severity of symptoms that the only way to know anything is just to wait and see. Why should I be reading into the future when I don’t know what the future holds. I found myself angry with her for giving us the information. I know I shouldn’t be, she is only trying to help.

I noticed that Madeline’s feed pump was upside down today. Normally they orient the syringe pump so the tip of the syringe points up, since the milk fat will separate and float to the top it makes sure she gets that most important part of the milk down the tube and into her tummy. Today the syringe pointed down, and there was wasted milk fat sitting there at the bottom of the syringe not getting down the tube. I asked the nurse about it. As she corrected it, she smiled and said she had been moving things around and accidentally inverted the pump the wrong way, she had made a mistake. Are you allowed to make a mistake like this when you have such an important job? I mean, right after that, the janitor came by to empty the trash. I have seen the same lady emptying the trash for at least 3 weeks and I haven’t seen her make a single mistake, she always gets both trash cans empty. She never forgets one, and her responsibility is just to empty the trash. Am I being too critical? I don’t know if I am being craggy or if this is something I should be speaking up about. I can definitely feel how this whole experience is wearing on me.

And so I must turn back to God in all of this. As I stray from Him, I get carried away in all that can go wrong and what I would do to fix it knowing full well that I am incapable of doing anything in this situation. I simply must trust in Him who is faithful and who loves me more than even my own parents do, that He is able to keep us standing through this trial.

I just had a great talk with Codi, our nurse. She came in to check on Madeline and then turned her attention on me as I sat quietly typing this email out. “How are you doing?”, “Fine” was my reply. “Do you have any questions?” “Nope.” She took a long look at me and asked “Is there anything you need to talk about?” This girl is good. Se we talked. She apologized about the booklet, she didn’t like the idea of it either. She said there are so many asymptomatic kids out there with genetic defects that you just don’t know about because they have not been tested. Geneticists love this stuff, it’s their candy, and they have an answer for everything and that is why they go looking through our DNA when they find something that can’t be explained, like Madeline’s heart. She said although it’s good to be informed as a parent that it can also cause you to treat a child differently and go looking for symptoms that don’t exist and making up new symptoms in your head. I told her that Lisa and I were supposed to get blood drawn and be tested for this defect. She said: “Only if you want to”. She warned me that a lot of parents don’t think about the consequence of being tested. What if you find out it was your fault? She said there can be a lot of guilt that comes with finding out you might be responsible for what happened to your child.

I told Codi that according to the booklet, one of the main symptoms that Madeline was supposed to have was hypotonia (weak muscle tone). Codi interrupted me with “and she definitely does not have that!” If you remember, Madeline has already pulled out one IV and they have to keep her arms tucked into her blanket because she keeps trying to pull at her ventilator tube. Thanks Codi.

I have felt a little self involved and more disconnected lately with others in similar situations here in the hospital. I had been praying for someone to minister to and God has answered.

I met Kiana’s mom, aunt, and sister in the elevator on the way out. Kiana is a 14 year old girl who had previously had part of her spine fused. She was in the hospital because of a massive infection she had developed in her spine. Doctors have been fighting it for the past week. The infection seemed under control but Kiana had recently started vomiting blood and doctors are not sure what is causing it. I told them we would be praying for her. When I asked how Kiana was doing, they laughed, typical teenager was their reply.

Then they told me about the boy in the room next door to theirs. His name is Rowdy, he is 9 years old and he and his family are from Wyoming. He had a 900lb bale of hay fall on him. He has suffered many broken bones and some brain injuries and was air lifted here to Children’s a few days ago. The main thing doctors are trying to resolve are the brain injuries and to what extent they are. His parents are living here at the hospital for the time being. Please pray for Rowdy’s recovery and for his parents too.

I also met Manuel, and wife (not daughter) Manuelita (Does this remind you of Dan and Danielle?). Lisa met them a few days ago, they seemed distressed and so she asked how we can be praying for them. They have twin girls Anastasia and Selena, one of them has a VSD and will likely require a heart surgery. They are from Albuquerque, NM and they too have been living here at the hospital. Please pray for their little girls and for the upcoming surgery.

Tess is a few rooms down from us and has been here for 6 months with her premature born twins Isaac and Lauren. She is from Montana (she says she practically lives in Canada) and her husband has finally been able to join her here (he had some work commitments that prevented him from coming sooner). They are really nice and their kids seem to be doing really good. They have been doing their laundry here and living at the Ronald McDonald house. Pray for their twins that they grow and learn to feed so they can soon all go home. Meanwhile they are enjoying the warm weather here, apparently it already snowed a foot where they live.

A quick update on Kate and Chris and their son Michael. Michael is home and doing terrific. They are so blessed, praise God. There is no shortage of things to think and pray about here. Not only that, but it seems there are endless opportunities to serve. I think about those that are away from home and how to best help them. Maybe some meals, maybe just friendship and someone to hang out with outside the hospital. Pray for Lisa and I’s continued involvement here. Pray that we could be effective in ministering the Gospel of peace. I was chatting with one of my customers and she reminded me how there may be trials, but there are always happy endings for those who wait on the Lord.

I got to hold Madeline for the first time yesterday. I held her for several hours but it only felt like 20 minutes. She spent the first part snuggling into my arm trying to get comfortable, then she dozed off. I just enjoyed the time being with her, talking on the phone, surfing the internet and studying my bible. Please continue to pray for Madeline Grace, pray for the results from the confirmatory DNA test. Pray for Lisa and I, and for all who live here at Children’s.

Grace,
Shanker & Lisa.

A couple of slow days

Dear friends,

Just a quick update on our little Madeline Grace. The last few days have been calm and good for Madeline, she has tolerated her feeds well and is now up to 4.5mL per hour (up from 1mL every 4 hours). Still, at 1 month old, Madeline continues to be a puzzle solving game as doctors are constantly checking in on her and making adjustments to her ventilator, meds, and feeds daily. God has been so good to as He reminds us daily that He is in control. Whose better hands to be in control than His.

Please pray for Madeline, her blood gas levels haven’t been too good the last couple of days and doctors and trying to solve it. Pray for wisdom for the doctors and nurses working with her. We have had some really amazing nurses and some ok nurses, we have been trying to get our primary nurses lined up but keep not getting them and seeing new faces every few days. It adds stress to not know the people caring for your baby. Pray that this all works out and we can start to see some regular faces with our primary nurses.

Also, pray for Manuel and his baby Manuelita. Lisa met them yesterday and seems they are having a bit of a hard time. Part of it is they are from Albuquerque and staying at the hospital sleeping wherever they can sleep. Pray for Lisa and I’s involvement in helping to meet their needs whether it be food, shelter, or simply friendship. Pray for their baby’s health and recovery from surgery.

Grace,
Shanker & Lisa

Some good news, good times.

Dear friends,

I had an opportunity to meet with some of the doctors today at Children’s Hospital and now have a better understanding of Madeline’s condition and what to pray for. It was really nice to get here in the daytime when more of the doctors were around and get to hang out with Sara, one of our daytime primary Nurses. Sara is awesome, she sings to Madeline and really cares for her (more than medically) and we are really blessed to have her.

Earlier today, Madeline began setting off alarms as her saturation levels dropped down into the 40’s and her heart rate dropped down to 70 from 140. Sara was down the hallway getting a drink so Lisa went out in the hallway and called for help. One nurse came in and then called for others. Another nurse and respiratory tech came running in and they started making all kinds of adjustments trying to bring her back. Sara came waltzing back in as they were all in here and went right up to Madeline’s bed and said: “Miss Madeline, are you pooping?!?” Sure enough, one diaper change and everything was fine. Later Sara said “Yep, Madeline is definitely a princess and doesn’t like her bottom to be dirty.” Praise God for Sara!!

Seems Madeline has made leaps and bounds of progress in the last 3 days (Praise God!!). Her glucose levels have been stellar (answered prayer) and her lung infection is slowly going away. There is still some ambiguity about the Growth Hormone I just picked up from the pharmacy today. Dr. Theresa Grover, the neonatologist I spoke with, said that because of her great glucose levels and other good numbers she is going to push the endocrinologists to delay giving her the growth hormone for a week or so and see how Madeline does on her own.

An opthamologist came by to look at her eyes. He drew a picture for Lisa of what normal optic nerves look like and what Madeline’s look like (see attached photo). It’s really a funny drawing and Lisa can’t look at it without laughing. He’s not really sure what it means but something they will look into further and probably do some eyesight testing in the coming months.

With regards to her latest DNA finding (specifically: The Chromosone 9q Subtelomere Deletion Syndrome or 9qSTDS), apparently it hasn’t been confirmed yet. If you remember, we originally got another diagnosis of 8p23.1 and this latest test revealed that the 8p23.1 addition wasn’t substantial enough to cause any major symptoms. This new confirmation test would reveal whether or not Madeline really has this new 9qSTDS genetic defect and what percentage of cells are affected, which would determine the likelihood of symptoms occurring. The nurses don’t think she has it.

The paper we were given to read about 9qSTDS said that universally the children had hypotonia which is weak muscle development which affects movement (arms, head turning), breathing and swallowing. One of the major concerns is their inability to close off their airway when eating or drinking so they get lots of lung infections. Well Madeline has already pulled an IV out of her arm, turns her head and looks at her nurses while they do her cares, and then main problem yesterday when they were trying to intubate her was that she closed her airway and wouldn’t let them get the tube in. As Dr. Grover (who was the one who finally got the tube past her vocal cords) remarked, she closed her airway like a steel trap.

The plan for the next week or so is to continue to wean her off the ventilator and wean her off the extra glucose and hormones she is currently getting. Depending on how she does they may start talking about taking her off the ventilator sometime in the next 2 weeks. Her feedings have gone very well and they have already tripled the amount she is getting in the last couple of days. They are still only at about 25% of what they should be giving her and plan to keep increasing the amount as she tolerates it for the next week and a half.

Here are my requests. Please pray that her glucose and other levels remain stellar for the docs. Pray that her feeding continues to go well as they increase the amounts so she can get the calories she needs to grow. Pray that the confirmation genetic test comes back negative so this is something we can put out of our mind. Continue to pray for Madeline’s heart, she still has 3 holes in it that will need to either go away (PRAY, PRAY, PRAY) or she will need an open heart surgery to correct them. Pray for Madeline’s eyesight, that it is fine. Pray for business for Soundings so we can get back on track. Pray for Lisa and I and the girls for God’s supernatural peace during this season in our lives. Thanks again to all who listen, all who pray, and all who have served us – you mean so much to us right now.

Grace,
Shanker & Lisa.