Saturday, September 25, 2010

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.

Monday, September 20, 2010

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.

Saturday, September 18, 2010

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

Tuesday, September 14, 2010

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.

Monday, September 13, 2010

A Heart Stopping Moment

Dear friends,

Today was a very difficult day, Madeline is now doing well and snoozing peacefully. I was feeling adventurous so I attempted and installation today.

First off, the install didn’t go as planned (they never do) and just seemed to go longer and longer as the day got shorter and shorter. The first call from Lisa was asking me if I was going to bid on a breast pump that was ending soon on ebay. The second call was to tell me that she found out that Madeline doesn’t qualify for Medicaid despite everyone telling us she did.

The third phone call was to tell me that we needed to get Madeline Growth hormone shots and it would cost somewhere around $250/month. The fourth phone call was to tell me that while changing out Madeline’s intubation tube they had a little difficulty and that Madeline went into Cardiac Arrest. Fortunately they were able to bring her back out of it and get her stabilized with the new tube in.

All of this while I am trying to install a stereo system. Makes it kind of hard, physically and emotionally. I felt like I couldn’t really leave mid-install but it was also the last place on earth I wanted to be at that moment. I wanted to cry, but being at a customer’s house didn’t seem like the place to let that happen either. All of this really wore me out. I feel really drained, and I am sure Lisa feels the same.

Before all of this started to happen, I got a text from a friend from church: “praying for you and your ladies..”. He wasn’t sure why he sent it, but felt compelled to let me know he was praying for me and the girls. Thanks, we really needed it today. Please continue to keep up in your prayers. Pray that Madeline’s glucose levels stay good. Pray that doctors can see what they need to see with her.I feel so drained from all of this and like I don’t have much to give, I don’t like it – I want to be a giver, I want to have a positive attitude - Pray for Lisa and I that God would continue to strengthen us each and every day to do His work. Also, please pray for Soundings (my work), summer is the slow time for us – pray for God to bless us with sales so that would be something I don’t have to worry about. Thanks for listening, have a good night.

Grace,
Lisa & Shanker.

Saturday, September 11, 2010

Keep your sugars up Madeline!

Dear friends,

Madeline is doing good, she has been mostly good for a couple of days now. Last night she was so cute and wide awake, engaging all the nurses and doctors who attended to her with her big beautiful eyes. As I tried to process all the information from the geneticists Madeline kept looking and smiling at me reassuring me that everything is just fine as if only God and her knew what was really going on.

Madeline has had some difficulty maintaining her glucose levels, they are trying to decide whether or not to give her growth hormone. The problem with the growth hormone is that if she gets it, it is likely her body will cease to make it on its’ own and she will require daily shots for the rest of her life. However, her glucose has been good and stable the last 2 days. Please pray that Madeline’s glucose levels remain good and that the doctors will not find need to give her the growth hormone.

She is starting back on feeds once more, pray that it goes well this time and that she can stay with it. Pray for me as try to make decisions about the upcoming memorial service. Pray for Lisa and the kids for energy amongst everything else. God has been so good to us.

Grace,
Lisa & Shanker.

Friday, September 10, 2010

News, and more news again


Dear friends,

I am feeling fragile today. As the doctors continue to give us more news over the last couple of days the only thing it seems to reveal is how little they know about these things and how they turn out. The MRI went fine, Madeline handled it really well. We got the results, which were of course (wait for it)…..inconclusive. The gist of the report was that there was the possibility of evidence of a “hypoxic ischemic injury” to part of the brain, which is to say that part of her brain may (or may not) have been deprived of oxygen and may (or may not) have been injured as a result. This means they will watch her and see. Other than that, it means nothing. The MRI also revealed a (possibly) normal Pituitary gland, one of the things they were looking for. It also said that her optical nerves were “equivocally mildly hypoplastic” which is medical terminology for “might or might not be slightly small which may or may not mean anything”. I wonder how many of us have equivocally mildly hypoplastic optical nerves and just don’t know it.

I opened an email today with the subject line “Fred’s last breath”. Fred was a good friend of mine and was my guardian when I was younger and lived near Seattle. He has been battling Lou Gehrig’s disease (ALS) for the past few years. The email said it was a very peaceful death and that Fred had finished his work. Although I haven’t spoken with him recently I miss him already, he was a great man. I now have to figure out if another memorial can fit into this life I am now living.

The geneticist came by with more reports. They finished a micro array and although they expected nothing new, they managed to find it. I haven’t read the paper on this new syndrome, but there are 50 known cases of it. Once again a wide range of possibilities can occur. Symptoms range from blindness, mental retardation, weak muscles (might not be able to walk or eat and swallow), lung disease, and premature death to no symptoms at all. What is one supposed to do with information like that? Lisa was at the hospital to receive the news and took it quite well. The doctors seemed concerned for her well being as she got the news but she assured them she was fine. Of course I received the news moments after reading the email of Fred’s passing so I didn’t do so well in that arena.

A new song we heard on the radio has very meaningful lyrics to us:

Do you wonder why you have to,
feel the things that hurt you,
if there's a God who loves you,
where is He now?

Maybe, there are things you can't see
and all those things are happening
to bring a better ending
some day, some how, you'll see, you'll see

Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning

Christian lyrics - BEFORE THE MORNING - JOSH WILSON

I believe there are things that we can’t see in this situation and I know that God will bring all of this around to a better ending some day, some how. So, pray for us once again. Pray mostly that God would take care of everything. Goes knows Madeline intimately, He knows her body inside and out and He knows the outcome already before it has happened. Pray that God would choose to heal Madeline and we can soon take her home. Pray that she grows up to be a wonderful girl and a blessing to all that know her. Pray that we can rely on His spirit to get us through this storm. And pray for peace for Lisa, Me, Madeline, Macy, Miranda, and Molly so we can all be still in His presence. Thanks again for all of your prayers and support and encouraging notes, emails, and posts they help us each day.


Grace,
Lisa & Shanker

Wednesday, September 8, 2010

Slow times, and and MRI

Dear friends,

The days keep on rolling by, sometimes they seem to melt into one. Madeline has had a peaceful day and a half. She has spent most of her time sleeping which is good, that’s when she burns the least amount of calories and can gain weight. I am glad she has calmed down, the last few days were hard because there wasn’t much we could do to console her. We couldn’t hold her and she couldn’t be breast fed. So they would just give her some drugs and she would calm down. She is now slightly over her birth weight of 2 ½ lbs and back on feeds. She is currently getting 1mL of milk an hour and will increase by 1 mL each 24 hours.

As the immediate worries of her being stable fade to the background doctors continue to look her over and keep coming up with Oh-by-the-ways’s. As in “Oh-by-the-way her optical nerve is small” and “Oh-by-the-way there may be something wrong with her pituitary gland” and “Oh-by-the-way her hips seem like they’re not right”. So far none of this means anything more than it is something they are going to monitor and test. I wonder how many of us would fall outside of the range on things we haven’t been tested for and still are fine.

With all the day to day stuff I had almost forgotten about Madeline’s heart. It still has 3 holes in it, on large ASD (Atrial Septal Defect – hole between the left and right Atriums) and one large and one small VSD (Ventrical Septal Defect – hole between the left and right Ventricles). I know God can make these go away, I have seen it before in my friend Dirk. Please pray that God would make these go away, so Madeline wouldn’t have to undergo heart surgery again.

Trials are a funny thing, they can all be put into perspective. In the Bible, the book of James says: “Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance.” – James 1:2, 3. Consider it PURE JOY, because trials produce perseverance. I certainly understand it when I read that, but sometimes it’s hard to keep up the joy thing. Lisa and I have been a little tired (emotionally) lately.

I chipped a tooth today.

I went to get a haircut. The stylist asked me “How are you doing today?”, I replied, “Oh, so so.”. She said: “My day has been terrible.” Turns out it was a real slow day for her and she hadn’t made much money. She had a picture hanging up of a pretty red headed girl.“Is that your daughter?”, I asked. She acknowledged. “How old is she?” I asked again. “Well she was six and a half in that picture but died shortly after.” We didn’t talk much after that. I am grateful that my girls are doing fine.

Tonight Madeline has another MRI. They are going to be looking at her head and brain and optical nerves. They are looking at a bunch of different things in this study. We won’t have any results for a few days. I am not sure what to pray for, pray that the MRI goes well. Pray that Madeline tolerates everything nicely. Pray for good results on the MRI (whatever that needs to be).

Grace,
Shanker & Lisa.

Monday, September 6, 2010

Who's in charge?

Hello friends,

Just a quick update on Madeline. The last few days have seen some ups and downs in her. She now has a lung infection that is bordering on pneumonia. This could possibly explain the ups and downs. They have already started antibiotics and are hopeful that they will do the trick. Lungs are very important in newborns and especially important in Madeline being premie and having a heart condition. Please pray for her lungs to fight off the infection so she can get back to the business of growing.

Madeline got upset again today, and managed to pull out one of her IV’s (who’s in charge now?). Fortunately she still has plenty of IV’s in her body still. I guess Madeline wanted her left hand back. Today Madeline won’t let the nurse’s sit still, she is setting off her alarms every few minutes. I feel like this is part of her personality beginning to develop. When I came in today, she looked up and smiled at me. I’ll end with that, please keep our precious little daughter in your prayers.


Here is a little video of Madeline after her third blood transfusion, she really perks up when she gets them.
http://www.youtube.com/watch?v=i_K_mG-FdAk

Grace,
Shanker & Lisa.

Saturday, September 4, 2010

Hello friends,

Well I was about to update you about life back in the NICU (we moved back here yesterday) while Madeline was stable….but then Madeline threw a fit. While the nurse was doing her cares and changed her position her sats (Blood oxygen saturation) began to drop, 88, 78, 72, 69, 64, 60, and I watched helplessly as they dropped all the way down to 40. Madeline’s heart rate went down too as mine went up. Her heart rated dropped to half of her normal rate. The nurse did a wonderful job of calling the resident and then ever so calmly began to bag Madeline and rub her chest until the numbers turned around (our nurse admitted later that she was nervous). I watched in my “silent freaking out” mode. Once again I was reminded of how precious her life is and I was back to praying and petitioning God for her life.

Her numbers are better now. She got the attention of most of the docs on the floor who looked her over and wondered and discussed among themselves what might have caused the episode. Maybe her chest tube slipped and then repositioned itself, maybe she had some gunk in her lungs, maybe something else. They did an xray to confirm tube placement and said it was good. Her lungs look a little wet again, but nothing to worry too much about.

They did a blood gas test and it came back a little metabolic acidodic, which means that it’s not related to her lungs but some other part of her body is not getting enough oxygen. She is still at risk for having some issues with her intestines so they have now called for another xray of her abdomen to see how things are doing in her intestines. They have suspended her feeding again while they do this.

Although her numbers are in the better range, Madeline hasn’t fully calmed down from this episode. I can see her getting mad and crying but no sound comes out, the breathing tube prevents it. I can tell because her mouth is open and her tongue is curling at the tip. I want so bad to hear her cry and then be able to console her. While she is in her isolette with the blanket covering it, no one knows if she is upset or not until her numbers go wacky. Maybe she’s figured out how to get our attention despite not being able to make a sound.

On the brighter side, I saw Chris and Kate yesterday in the lobby wielding an infant car seat. Yep, Michael is going home – Praise the Lord! This was much earlier than they had expected. They were real excited about it and I rejoiced with them before they left. Please continue to pray for Madeline, especially now, that God would comfort her and she would calm down. Pray for the docs here, that they would see what God already knows about her body.

Grace,
Shanker & Lisa.
Dear friends,

Just wanted to update you on Madeline. She has been doing good and has been stable the last few days. Earlier today her belly was distended and she vomited so they stopped her feedings for a bit to do some xrays. They think she just had some gas bubbles and gave her a laxative to help things along. They have started her feedings again slowly. If all goes well we’re hoping to be back in the NICU by the end of the week.

Today continues to remind me how fragile we are, especially small children. Austin passed away last night. A couple of days ago they had moved him into the room that Aaron was in, across the hall from our room. I wonder why God puts them there, is it so we can be constantly reminded to pray for them? His family was really distraught yesterday morning and we were praying for them a lot throughout the day. He had a lot of visitors here yesterday afternoon and evening and his family really seemed to be more at peace as the day went on. Praise God. Please continue to keep that family in your prayers.

We got locked out of the CICU for a bit this evening, they close it up for 45 minutes while the nurse/doctor shift changes. We waited with another family in the lobby watching AFV (does anyone else think this is the funniest show on TV??). At 7:45 we all headed down the long hallway to find that the CICU was completely closed down to make it sterile (this usually means some surgical procedure is happening in the CICU). As we waited, they told us about their son Anthony who is 5 weeks old. He had surgery on Monday to get a pacemaker and was not doing so good after the surgery. While we were waiting, his dad picked up the phone to call CICU to check up on his son. When he mentioned his son’s name he was put on hold. His mother softly and slowly began to cry, her mother trying to console her. Finally dad got the word, they were working on Anthony. They were trying to establish a central line (an IV line that goes up the arm and ends near the heart) so they can be more effective with medications for him. Seems all is well for Anthony at the moment. Please pray for him as well.

I haven’t heard anything lately from Michael’s parents Chris and Kate, seems all is well with them. Continue to pray for Michael anyways. Same goes for Dan and Danielle. I remember so vividly being on my knees with them praying. Dan straining hard to get the words out of his mouth as he asked the Lord: “don’t make me drink this cup”. There is never a shortage of reasons to pray here. If you ever come up dry in your life, hang out on the 3rd floor of Children’s Hospital, there will be plenty of people to talk to, and plenty of reasons to pray. Please keep Madeline Grace in your daily prayers as she recovers from surgery and tries to put on some weight. God Bless.

Grace,
Shanker & Lisa.
Dear friends,

Let me being by thanking you again for all your help, support, prayers, and just being there to listen to these emails. It means so much to us. Also, maybe you’ve noticed a pattern, more emails and updates when things are rocky, less when things are fine. This is how I cope with stress, I email and blog. So if you haven’t received recent updates, don’t panic I am probably resting and not stressed. As the nurses here say: “No news is good news”. Madeline has been real good the last couple of days. They plan on starting her feedings again today and see how she does. She is on a little morphine to hep with the discomfort from the surgery and stitches in her side and back. Otherwise she is tolerating everything quite well. She was able to video Skype with her Aunt Bonnie and Aunt Lariate this morning, they loved seeing her sleeping peacefully, it was a real treat.

Sunday I went to church with my brother Dhondi and Molly and Miranda. It was good to be around fellow brothers and sisters in Christ to worship together. The real treat was holding little Kahlan, born to Adam and Amy while we were at the NICU at St. Joseph. Amy was so gracious to let me hold her. She is beautiful and I can’t wait to hold Madeline in the same way when she finally upgrades to wireless. The sermon was probably the most direct, concise, and immediately applicable sermon yet. It was all about bearing one another’s burdens. Paul’s letter to the Galation church says in Galatians 6:2 “Carry each other's burdens, and in this way you will fulfill the law of Christ.” I don’t think this was so much a new lesson for us to learn, but rather an explanation of what God had already been doing for us through all of you. I appreciate how you carry this burden with us and in this way fulfill the law of Christ, God is so good.

More and more being here I am realizing how Madeline is a small part of a bigger picture. So I’ll take this time to update you as well on others here.

I talked briefly with Austin’s dad Virgil (Virg) and younger brother Eric. Austin is the 15 year old who had his second heart transplant and hasn’t recovered normal brain activity yet. We see them around but rarely get a chance to talk with them. They are still waiting for a miracle, Virg just seems angry. I asked if there was anything I could do for them to help out, they just asked for prayer. I don’t know if they know the Lord. Pray for them and for a miracle for their son Austin. I told him there were lots and lots of people praying for them, let me be right.

Michael, who had the same surgery that Madeline had is doing great. He came off the ventilator and is feeding and is supposed to be transferred back to the NICU today. His parents Kate and Chris (the ones who had visited our church) are also doing good. We run into each other and chat often. They told me about a huge prayer session they had a church yesterday for Michael, Madeline, Austin and his family, and Dan & Danielle who lost their son Aaron. Pray for Michael’s continued recovery.

I haven’t seen or heard from Dan and Danielle yet I continue to pray for them daily. Please pray for them also, that their faith will be strong enough to carry them through this trying time, although I already know it will be. Pray that God comforts them abundantly.

Lisa had made friends with Tessa in the NICU, she is the mother to premature twins. I saw her this morning in the elevator and she said all is well. She is from Montana and is staying at the Ronald McDonald house nearby. I always see her here alone, I wonder if she has friends around, someone to go shopping with, or a family to share a meal with. Pray that God would provide that for her, pray the God would use Lisa and I and our friends to be a support and encouragement to her and meet any needs she has.

It is awesome to see God working through all of our lives. I am so encouraged and blessed through this experience to interact with God in a very REAL and PERSONAL way. He is definitely being glorified through all of this. Amen.

Grace,
Shanker & Lisa
Dear friends,

Madeline had a rocky night last night as the doctors had predicted, there was certainly a fine balancing act with all the medications they were giving her, she had 8 syringe pumps going at the same time. The biggest problem was trying to control her blood pressure. It was fine after her surgery last night, but kept dipping real low during the night. They kept trying different things that would work for a bit, and then her blood pressure would drop again. She didn’t have any other abnormal vital signs so they began to think maybe the sensor was reading it wrong. We had a lot of doctors checking her out in the morning, doing x-rays, and more ultrasounds trying to figure out her blood pressure. Just as Madeline has done so far, she baffled them. The pressure from an artery in her foot would be around 20 (real low), but the ultrasound showed pressure in her heart in the high 60’s (good, right where they want it). The were looking all over the ultrasound for where blood might be obstructed thinking that the pressure in the top half of her body was good, but there was blockage to the lower body. Just when they think they have it pegged, they do cuff blood pressure and get a reading of 70 down the same leg where her foot is reading low, and then get a low 30’s in her arm. Finally the doctors decided she was otherwise fine and agreed to no longer pay attention to her blood pressure and to stop chasing it around. That was about the time that Madeline finally returned all of her numbers to normal. Cheeky little girl.

Today was a good day. Much slower and better than yesterday. Madeline slept most of the day, and was very well behaved. They were able to take her off some of the meds and by the afternoon had already dropped her remaining meds by over half. They are hoping to get her weaned off more of them tonight as her body can tolerate it. My brother, Lisa’s parents, Gewan and Mari and their kids, and my 3 girls came over today. We had fun playing around the hospital, joyriding in the elevators, and Alex pulled the girls around in the red wagons they have here. It was a nice change of pace from yesterday. It’s hard to believe that two, so completely different days can exist right next to each other. I still prayed a lot for Dan and Danielle today as my heart thought of them. Dan is so strong in his faith I know they will be fine, they may be hurting a lot right now, but they’ll be fine. I also saw Austin’s parents this morning and was reminded to keep praying for them. Michael did really well last night and all day today, they are hopefully moving him out of CICU in the next day or so.

Thank you all for lifting all of us up in prayer yesterday. God was good and faithful. Aaron is playing with the angels today and I know his parents will be comforted. Couldn’t have made it through yesterday without the Lord. Please continue to pray for us and Madeline Grace and all the others.

In His love,
Shanker & Lisa.

The Circle Grows

Hello friends,

Madeline is now peacefully sleeping. She has been wide awake since her surgery, just looking around with her big eyes. She had 4 episodes so far of SVT (Super Ventricular Tachycardia for you med students) where her heart rate jumps from its norm at around 140 and nearly doubles instantly. Each time our nurse quickly moves into the room and pops a syringe all ready to go into her IV and 4, 3, 2, 1, everything is back to normal. Until she does it again. It’s almost like Madeline is going for a personal best. Although I strongly discouraged her from doing it she did hit an all time high of 302. “Welcome to the 300 club Madeline, I’m proud of you – now don’t do it again.”

Today has been the most difficult day of our lives. We have been pushed beyond what we believed our own mortality could withstand. It has been full of the highest highs and lowest depths of emotion. We were fearful this morning as Madeline began her SVT and struggled to understand it. We struggled hard to understand the surgeon as he told us why this surgery needed to be done immediately. We cried as he told us how risky the surgery was going to be and that riskier still would be to do nothing. We prayed hard as we waited for that hour.

Then we rejoiced with the angels that the surgery had gone well. We praised God for saving Madeline and for the skilled surgeons. Cardiologists and other doctors came into our room and praised the bravery and heroics of our surgeon for taking on such a risky surgery. Madeline was on her road to recovery. As we walked down the hallway to deliver the news to those in waiting we passed a family, falling apart, crying out loud. They had a son, Austin, who had just gone through his second heart transplant during which blood flow was interrupted to his brain. The surgery was over, but Austin’s brain activity had not returned. I could hardly deliver the good news of Madeline while I could still hear the other family crying down the hall. I now felt the weight and burden of their pain as well.

And so we started praying again, first praising God for the success of Madeline’s surgery, then praying for this family down the hall that we didn’t even know. As we finished the prayer, we opened our eyes to a larger group. “Hi, our son’s name is Michael – he’s in surgery, can you pray for him too?”. And so we did. We found out later they had visited our church a month ago and we recognized each other. We shared the good news of Madeline. They rejoiced with us and included her on their prayer chain. Then their surgeon came out, Michael had been perfect in surgery and it had gone superbly. We rejoiced with them for Michael. We ate a meal.

We went over to visit Michael, then we met Dan and Danielle, an awesome young Christian couple. They brought us over to their room to meet Aaron Matthew. He, too, was recovering from a successful surgery. God is indeed good. As we watched he opened his eyes to see his mom and dad and then stretched. Dan and Danielle came over to see and pray for Madeline Grace. And as we talked, behind them every doctor and nurse in the area sprinted for their son Aaron’s room. He went into cardiac arrest.

This was the moment that Dhondi, my brother who had just flown in from Arizona decided to show up. In less than 5 minutes he was almost under more stress than us. I quickly informed him of the situation and then left to gather Michael’s family just leaving from the waiting room. Once again we fell to our knees in prayer (it gets easier – after several times in one day your knees just automatically know what to do). We held Dan and Danielle tight and we prayed over and over and over as we cried out to the Lord. “Please Lord Jesus, please just touch Aaron and bring his life back”. We watched helplessly as across the hall from us their room became a surgical suite and 20 people did all they could to save Aaron. And then he was gone. The air around the nurses and doctors here was defeat, and exhaustion. We cried and cried for Dan and Danielle, hoping somehow that if we could feel enough pain for them that it would take some of their pain away.

And now we’re back to prayer, praying for Dan and Danielle. Praying for the Great Comforter to meet them right now as they get to hold their now lifeless child. Praying for their hearts that Jesus would keep them safe from Satan. Praying for the power of His grace to heal them during this hour. Praying for answers that we may never get. And finally turning our attention back to our little Madeline, sleeping peacefully. Praying for her now. Pray that she recovers from her surgery. Pray that she can be moved back to the NICU soon. Continue to pray for Austin’s family. Continue to pray for Michael’s family. Continue to pray for Dan and Danielle. Exhausted new in every way, pray for us to sleep. Continue to pray. Amen.

“Though He slay me, yet will I hope in Him” Job 13:15

Grace,
Shanker & Lisa

Surgery done

Praise the Lord! Madeline made it through the surgery. The surgeons and cardiologists were happy with the results and said everything went well. Madeline is now in a new room in the Cardiac Intensive Care Unit (or CICU or Kick You). Praise the Lord for he is good and faithful and attentive to our prayers. Thank you for all who prayed with us and all who were with us in mind and heart.

No sooner can I rejoice for Madeline’s sake then my heart is burdened for a family in the hallway. They have been crying for the last hour. Their son Austin has just had his second heart transplant in 3 days, the first one did not work. During this surgery, blood flow to the brain was interrupted and although the surgery is done he has yet to regain normal brain activity. Things do not look good for Austin. Please pray for God’s healing power in Austin. Please pray that the Great Comforter would come and comfort his family and that His holy spirit would be with them.

God is Good! As we were circled in prayer praising God and praying for Madeline’s recovery, we began to pray for Austin and his family as well. When we opened our eyes, our circle had grown. “Hi, our son’s name is Michael – he’s in surgery, can you pray for him too?” And so we continued praying. That family looked familiar, they had visited our church last month. Michael has just finished his surgery. It went well, praise the Lord.

The doctors have warned us that Madeline will be very sick for the next 2 days and it will be a rocky road. Please continue to pray for Madeline as she recovers. For now, she sleeps peacefully in her new bed, trying to breath above the ventilator. Amen. And Amen

Grace,
Shanker & Lisa

As I look upon her face, I pray to see those beautiful eyes again. Look at her left hand I wonder if she KNOWS who is in control. Amen.

Shanker & Lisa
Dear friends,

Please stop what you’re doing, drop to your knees, and pray. Madeline has developed a heart arrhythmia this morning due to the extra blood in her lungs and the workload on her heart. The surgeon has just come by and wants to perform heart surgery on her today. He thinks that by widening the aorta, closing off the PDA, and repairing another artery, he can encourage more blood flow to the body thus reducing the flow to her lungs. This is a risky surgery and the odds of survival are less than 50% for her at this point. I have never felt the weight of a coin toss as I do now. They will go in thru her left side to make these repairs, which means if anything goes wrong they will not be able to put her on a bypass machine to save her. He doesn’t think a bypass machine would work anyways with the size of her heart and arteries.

Although this is a very high risk surgery, they don’t think her odds are going to get any better as time goes by. The xrays show her lungs getting more and more flooded day by day. We don’t know exactly when they surgery will happen, but soon. Please be praying for our little girl. And when you pray, please pray KNOWING that God hears and will respond, because He will. Pray for God’s comfort and grace to come upon us at this very hour. Continue to pray in the coming hours for strength for little Madeline Grace.

Lovingly,
Shanker & Lisa.
Hello friends,

The last 2 days have been calm. Madeline had her MRI yesterday afternoon, they had to sedate her with anesthetic for the procedure. It took her about 6 hours after that until she was breathing well on her own again. She is still intubated so they just turned the settings on the ventilator up until she was better at breathing on her own again. It reminds me of how fragile her life is right now. The cardiologists were by this morning to see Madeline and haven’t looked at the MRI images yet. They plan on looking those over today and then meeting with us early this afternoon.

Meanwhile, I am trying to settle back down into work. It’s hard as I would have expected, how can I be here when Madeline is all alone at the hospital? Most of the time someone is with her (either mommy or me) but what about those other times? Does she know we still care and love her? So trying to get work done while being distracted is a little tough. I am happy to get back into the swing of things though.

Please pray for the results from the doctors today. Please pray especially for Madeline’s heart that the left side would be sufficient for her and that the can repair the other (less major) things with just 1 surgery, or miraculously with no surgery at all. Pray that her current condition will allow her time to grow before any surgeries or permanent decisions need to be made. Pray that God would be glorified in this. Pray also for Lisa and I as we try to settle down into a routine. Pray that God would use us in His way at the hospital. And I feel like I can never thank you all enough.

Grace,
Shanker & Lisa.
Hi friends,

Well the meeting with the geneticist went fine. He seemed a little giddy as he presented the information (he really likes this stuff!). Madeline has a duplicate piece on her 8p23.1. If you’d like to know more you can read the paper entitled “8p23.1 duplication syndrome differentiated from copy number variation of the defensin cluster at prenatal diagnosis in four new families”, which was handed to us. There are 10 recorded cases of this (now 11). From the info we have, the only likely symptom is a heart defect – which we have. There are other symptoms, but rare and not necessarily tied to this syndrome. The author of the above mentioned paper is a colleague of our geneticist at the university and would like to come down and see Madeline.

All of this doesn’t really affect or change the situation Madeline is in. We’ve got an MRI tomorrow so please be praying for that. Once again, thank you all so much for prayers and encouragement that you are sending our way. Currently Madeline is resting on mommy’s chest and mommy is smiling.

Love,
Shanker & Lisa.

Just another day

Dear friends,

Lisa went to the doctor this morning and checked out fine. The doctor said of her incision that it looked “perfect” so thanks to all who prayed for that. I got through the memorial service fine today, thanks for those prayers as well. As I felt the Lord carrying me through it I was trying to describe the experience to myself and I likened it to my wife, giving birth, with an epidural (she does very very well with epidurals). So it was like I was there, and I knew it should hurt, but somehow it didn’t. Praise the Lord for his help!

Madeline is doing well today, they have been weaning her off the ventilator all night and she is now on the lowest setting and she handled it all quite well. They moved the MRI to tomorrow at 3:30pm. They plan to keep her on the ventilator until then, and then try to move to a CPAP machine again. Pray this goes well. We meet with the geneticist, I admit I am worried about what results they may have. Please pray for us as we get this news, pray it is nothing too bad. My brother told me that news is news and we tend to categorize it as good or bad depending on how we feel about it. God sees things very differently and we don’t know all that he knows. So what think might be good or bad, may not be.

Another cardiologist came in today to see Madeline, he told us again how she is a real borderline case and his intent was to preserve both ventricles of the heart if it were possible to use them both but also said a 1 ventricle heart repair is still better than 1 good and 1 bad ventricle. MRI will reveal a lot.

Please pray for us as we meet with the geneticist here in a little bit. Pray for the MRI tomorrow that it reveals good news (there I go again). Pray for Madeline to grow and get stronger each day. Pray for Cindy, she is the fiancée of Mark, my friend who passed away on Saturday.

Grace,
Shanker & Lisa

More prayers needed.

Dear friends,

More prayers please. Last night I found out that a friend died on Saturday. I was asked to come to lhis memorial service today. Although it really felt like another punch to the face, I am glad this happened at a time that God is already sustaining me so much. Please pray for me as I go to the memorial, pray that God would use me there to His glory.

Today Madeline has an MRI on her heart. Please pray that it goes well and that she handles everything nicely. We got a call from the Geneticist today. He wants to meet with us to go over some preliminary findings they have. This doesn’t sound good. I asked him if it was bad or good news, he said it was just news and would prefer to meet in person. He said it might help explain some of the things going on with Madeline. We will be meeting him at 5 today, please pray a lot for us, pray that it is good and helpful news. Pray for Madeline that she remains stable and begins to grow. Pray for Lisa as she continues to recover from her c-section surgery.

Grace,
Shanker & Lisa

Answers and Waiting

Hello friends,

Well, some answered prayers, some optimism, and still a lot more waiting. The report we got from the cardiology meeting (I was told there were over 30 docs at the meeting this morning) seemed a little more optimistic. The room is still divided and the only decision they have made so far is that they need a Cardiac MRI to make any decisions. That is scheduled for some time tomorrow. In a best case scenario it sounds like they want Madeline to fight off her lung infection, remain stable, feed and gain weight. Hopefully she could come off her respirator at some point. Once she reaches 7lbs, they might attempt to do any necessary repairs to the heart in one single surgery (doesn’t that sound optimistic?), although, keep in mind, no one has really decided that that would be the case. This is all something we just have to keep praying for. I pray and hope that she makes it because it gives her heart more time to develop and possibly show the surgeons that it is functioning and healthy and doesn’t need any risky surgery.

We met with the geneticist today, he said that there were no glaring genetic syndromes that come to the surface so far. We are still waiting on the DNA test to get finished. Madeline just got another x-ray, followed immediately by more ultrasounds of her kidneys and brain. She doesn’t tolerate people messing with her too well, her stats kind of go all over the place until they’re done and then she eventually calms back down.

The X-ray just came back, her breathing tube has shifted some and her pulmonary edema (inflammation and wetness of the lungs) seems to have gotten worse. This could be related to her infection, blood flow, or it could just be what happens when Madeline gets all ruffled up – I tell you, she doesn’t like being moved around and tested. A day in the life of a patient in the NICU – I pray for all dads and moms who have to deal with this.

Thanks again for all the prayer and support. How can anyone possibly go through this without God and you all? Thanks to all the people I haven’t even met who are praying for us and encouraging us. It is deeply and powerfully felt here. God has been so good to us through all of this, His peace resides with us here at the hospital and with Madeline. It’s amazing to see her stats all over the place and begin to pray over her and watch the numbers come back down to normal as we pray. It’s amazing to see and hear about so many people praying to God for our baby girl. That’s the first miracle.

Grace, Peace, and lots of love,
Shanker & Lisa.

More tests

Hello friends,

Madeline has 3 out her her 4 blood test results looking for infection back already. Her spine results are clear. Her urinary/kidneys results are clear. Lungs show some kind of infection, they now are trying to determine what it is and what best to treat it with. Blood culture should come back today. Pray for good results. They had to take a lot of blood from Madeline (that’s what it felt like to us) for these tests. Later they needed more blood for another test and the test came back with a response that there wasn’t enough of a sample. So they had to try again. I think she may be running out.

Today is a big day for Madeline. Doctors are meeting now to discuss her case and try to come up with a plan. Please pray for that meeting, pray that the doctors are able to see what God wants them to see and that they are able to make some decisions. PRAY FOR REALLY GOOD NEWS! PRAY FOR A MIRACLE! Pray for Madeline as she fights this lung infection, pray they are quickly able to figure out the right antibiotics for her. Pray for Lisa and I as we receive the news and work to understand it.

Much Love,

Shanker & Lisa

1 week old

Hello friends,

Madeline turned 1 week today! She continues to be a mystery to everyone one. I managed to go to church this morning with Molly. Lisa went out for some much needed shopping - you girls might understand that one. Thanks again to all who are watching and playing with our kids back at home.

Madeline has developed an infection. It is either the spinal cord (life threatening), blood (life threatening), lungs (life threatening), or urinary tract/kidneys (not so life threatening). These are all treatable, but her condition really complicates things. Her platelet count is low again, if you remember they gave her a transfusion that brought them up, and now they are inching back down. This may very well have something to do with her infections. They have drawn her blood again and done a spinal tap (to get spinal fluids) for all the tests necessary to pin point the infection. We should have results in an hour or so. Any treatment for this would push off surgery at least 5 days. Maybe this gives Madeline more of a chance to grow?

As I sit here talking with Linda, I just had déjà vu. What does that mean?

So tomorrow will be a big day in her life. Doctors will have a conference, compare notes and try to put together some kind of plan for her. Please pray first for Madeline, that her infections would go away. Pray for all the docs on Monday and that they would see what they need to see and make decisions that are in accordance with God’s will. Pray for Lisa and I as we bear the news and try to make decisions as well. Continue to pray for the girls and the rest of our family who is bearing this with us.

Thank you all so much for your feedback, your prayers, and your encouragement. I am so proud of Madeline for getting so many people around the world (yes it’s true) to reach out to the Lord. I think that faith and prayer for things you have no control over will be what defines this part of her life. I have put together this video with some pictures and your comments together, please watch and share with others, and above all – please keep praying for little Madeline Grace.

Watch the video here.

In Love,
Shanker & Lisa

Transferring to Children's

Hello friends,

The emails get a little harder when you start running out of stuff to say. I kind of feel like my tank is on empty. First, thanks to all of you. Thank you for bearing this burden with us, you can’t imagine how grateful we are for your love, support, and most of all prayer. So thank you, thank you, thank you.

Madeline was transferred over to Children’s Hospital today. She took an ambulance ride and handled it quite well. The doctors got right to work here and the cardiologist came right up and started a new ultrasound. We were praying and praying for good news but unfortunately Madeline loves hanging out right in the middle of the gray area. She is one in a hundred million and refuses to let anyone diagnose her. She is textbook “non-textbook”. It was a long ultrasound and didn’t get any real news. There are some abnormalities with her valves (neither good or bad at this point – just abnormal), and the possibility that the left side of her heart only looks small because maybe the right side of her heart might be big. Once again the diagnosis ranges from “you can go home” to “surgery or transplant with low odds of survival”.

Seems like it’s gonna be a slow Sunday where they just monitor and learn her behavior. On Monday they will be hosting a conference in Madeline’s honor to discuss her and other cases. We are told that is where they will ask the “hard questions” and make the “tough decisions”. One decision could be simply to do an MRI and wait until the results of that before making any decisions.

Pray that Madeline’s heart and lungs continue to develop and get better. On anything to do with her heart it is more likely her lungs that will determine her chance for survival so pray for those too. Please pray a lot for us leading up to Monday. We might get hit with all sorts of news and have to make decisions on it. Not sure what that is going to look like but definitely can’t get through it without God’s grace. I am not really sure what else to pray for. I’ve been praying and praying and praying and finally heard back “Be still”. So we shall.

Much Love,
Shanker & Lisa

Storms and High Tides

Allow me a moment to express how I feel…

“AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHH!!! LORD PLEASE DELIVER US!!”

And now a parable…

“There was a couple who got stranded out on a rock in the ocean during a big storm. The waves were so bad that no one could come out and rescue them. At times the waves grew so big it felt that they would be knocked off the rock but they just held on real tight. Other times the waves would pull back and the sun would briefly shine and they were tempted to let go of the rock and try to swim to safety, but then the waves would grow big again. They just knew that if they held on fast to the rock, through the big waves and the small waves that they would not fall down and eventually the storm would subside, the waves would come no more, and the sun would shine again.”

That is how we feel. Big waves, small waves, some sun, then big waves again. It’s going to be a long storm for us.

“I love you, O LORD, my strength.
The LORD is my rock, my fortress and my deliverer;
my God is my rock, in whom I take refuge.
He is my shield and the horn of my salvation, my stronghold.
I call to the LORD, who is worthy of praise,
and I am saved from my enemies.”

Psalm 18:1-3

My Lord calms me. I know if we cling to Him tightly we will be just fine.

Big waves came again today. The doctors have been anxious and working to get things crossed off Madeline’s list of problems. Her heart and lungs continue to be a major source of concern. Everyone is still on the fence as to whether or not her heart can support her. One ultrasound and diagnosis looks good, the next one not so good. Everyone has decided it is in Madeline’s best interest to take an ambulance ride over to Children’s Hospital to the Cardiac Intensive Care Unit (CICU). They will be able to do an MRI and have the surgeons who would be involved in any decisions see her. Although the docs here have reassured us that this does not necessarily mean “on step closer to heart surgery” it is hard on us because that’s how we feel. They may still decide to wait and watch her over at Children’s. Only God knows.

Please continue to pray for baby Madeline, pray that God would deliver her from her problems. Pray that her heart is big and strong enough for her. Pray that God would reveal to the doctors and surgeons what they need to see, pray for all involved that no quick decisions would be made. Pray for Lisa and I as we struggle with all these big decisions. Please pray that God’s plan would be revealed to us. Pray for the strength of our grip on God to be increased through this.

Thank you all for continuing to bear this burden with us in love and patience.

Grace,
Shanker & Lisa

More on her heart


Dear Friends,
We are expecting a pediatric cardiologist sometime tonight to do another ultrasound of Madeline’s heart. Please pray for a good ultrasound. The main areas of concern are:

1. A small left ventricle on her heart
2. A possible interrupted or narrowing of the aortic arch
3. A vsd (hole in her heart between the left and right ventricles).

I thought some pictures might help.


This is a picture of what an interrupted aortic arch looks like. In an normal heart the aorta leaves the heart, feeds the upper body and then curves down to the lower body. It makes a candy cane shape. In an interrupted arch, the aorta as it leaves the heart is not connected to descending aorta that feeds the lower body. In utero there is an additional “jumper” artery the connects the Pulmonary Artery to the descending Aorta called a PDA. The PDA normally closes off in the first day or two after the baby is born, they are giving her a drug that helps keep the PDA open.

We are praying today that the aortic arch is in good shape. The doctors may want to wean Madeline off her drugs and allow the PDA to start closing. When this closes, Madeline and her heart will be on her own. The doctors would only do this if they felt her heart can handle it. Pray for good news concerning this.

Grace,
Shanker & Lisa

4 Days Old

Dear Friends,

Last night was a bit of a doozie. Twice Madeline’s numbers for blood oxygen saturation plunged very low and then came back. The have re-intubated her and have her back on the ventilator as a precaution. Also, her platelet count which has been slowly going down had dropped of significantly overnight. They have given her a platelet infusion and will continue to monitor how she does with that. However, they were able to establish a central IV line with no bleeding (another answered prayer!!) so thanks be to God and all that prayed for that to go well.

There is still a question about whether or not all of these things are related somehow to a genetic defect. They had done a DNA test which came back normal but had sent out for another one on the off chance they had mom’s DNA and not Madeline’s. One one hand it would be nice for the test to come back and reveal something that ties all of this together, on the other hand I want the test to come back clean and I don’t want Madeline to have any genetic defects. The cardiologists are supposed to come by today and do another ultrasound on her heart and make some decisions. Also, all of this is beginning to take its toll on the other girls (Molly, Miranda, and Macy). Although they have seen mommy every day, the lack of normalcy is stressing them.

Please continue to pray for us. Pray for Madeline’s heart ultrasound today, pray that the cardiologists continue to be reassured about her heart. Pray that it is working well and that the Aortic Arch is not interrupted. Pray that Madeline’s oxygen and platelet count stabilizes again and that she can come back of the ventilator soon. Pray that Madeline’s DNA test comes back normal and that all of this is unrelated speed bumps on the road to recovery. Pray for Lisa and the family that God continues to comfort us. Pray for Shanker as he begins to think about work and how all of this is going to fit in with it. Thanks again for your grace and love and support.

Grace & Peace,

Shanker & Lisa.

Day 1

Dear Friends,

God is good! Madeline continues to be stable and impress the doctors. She turns 2 today (days that is). Last night at the nurse’s urging, the docs agreed to remove Madeline from the ventilator. They did move her to a CPAP (sp?) machine which is still providing oxygen but thru the little nose tubes. The machine is not actually breathing for her, just providing air pressure to help her lungs expand fully. She is doing the breathing on her own.

The ultrasounds of her kidneys and brain came back with some irregularities but nothing uncommon with a newborn this young. This is not something they are worried about at all, just something they are going to follow.

Dr Miller, a pediatric cardiologist whom we haven’t met but is partners with our cardiologist, came by yesterday to review the ultrasound and consult with the docs. We were told that he was a lot more reassured about her heart. It seems like the plan now is not to rush off to Children’s Hospital for surgery but rather to leave her here to grow and see how she develops (answered prayer!!). There is talk about maybe taking her off the drug that is keeping her extra arteries open and see if she can manage on her own.

A lot have asked about visiting. The answer is “yes please”. Please call Lisa first @ 303.550.2303, best to visit during the day until 3pm, after that Lisa needs quiet time to rest and watch all the romantic comedies I rented her from Blockbuster. Depending on when you come we may be able to take you to the NICU to see Madeline, please no kids are allowed in the NICU.

Please continue to pray – we have felt and appreciated all of your prayers. God is good and gracious to carry us through this so please thank Him for that. Madeline’s heart needs to grow, and the doctors need to see uninterrupted blood flow out from the heart to the various parts of her body, pray that doctors see that. Pray that her kidneys and brain develop normally and are not a cause for concern. Lisa is anxious to help Madeline, pray that her milk comes in soon so she can be reassured and provide that nutrition to her baby. Thanks again for your love and prayers.

In Grace,
Shanker and Lisa