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.
Tuesday, November 23, 2010
Saturday, November 20, 2010
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.
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)
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)
Friday, November 19, 2010
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.
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.
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.
Tuesday, November 16, 2010
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.
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.
Thursday, November 11, 2010
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.
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