Routine has arrived again and with it a bittersweet return to normalcy. The fall reminds us of the coming winter and reminds us of this past tempestuous season. We've been reflecting recently on the year and pregnancy with a bit more clarity now that we hope the worst is over.
While we would have never wished for this trial, one of the positive outcomes is connecting with new people and old friends. There are countless acts of service, gifts and kindness for which we are thankful. On our end of things, we can see people visiting our site from a few continents. We have friends in Peru, the Dominican Republic, Bangladesh, Bolivia and Guatemala that have made visits to our blog. At the peak time right around Ephraim's birth we were getting unique visitors of about 1,000/day. Now, I'm not sure I know that many people and in fact many of the cards, notes and gifts have been from people we've not met or talked to in a very long time.
So, to those of you out there who have been supporting us in many ways, thank you. Thank you for the cards during the pregnancy, some of which were sent regularly. Thank you for the notes of encouragement, the gifts made in remembrance of our son which serve to validate his life. Thank you for cleaning our house, buying us food, preparing a meal for us, hosting us at your house, watching our boys and being gracious with us as we weathered this storm. Thank you for the financial gifts, the establishment of a website for us and our cause unbeknownst to us. Thank you for the prayers, concerned looks and hugs (yes, even I can appreciate hugs!). Thank you for attending the funeral and suffering with us through the saddest week of our lives. Thank you for the remembrances of Ephraim, the necklaces, blankets and trinkets. Thank you for helping our boys understand this experience. There are so many people to thank, we won't be able to thank you all personally like you deserve but I hope you know we appreciate the ways you've served us and it hasn't gone unnoticed.
We will try to avoid slipping into the abyss for another four years but I'm hoping we won't have anything exciting to blog about while we catch our breath. We would love to stay connected to you and let you know of our whereabouts so we will leave this website going and may post intermittently (how's that for non-commitment?). We always appreciate hearing from you.
Monday, September 29, 2014
Sunday, August 31, 2014
Hurricane Ephraim
Thank you to those who were able to make the funeral. There were many who made relatively long trips to Wabash to visit us. Under any other circumstances it would have been a great party. Friends we've not seen in years and people we've not talked to in quite some time. It meant much to us that you showed up.
I've spent most of my adult life avoiding funerals. I don't know whether it is the finality of death, the general unease of everyone present or the lack of words needing to be spoken at a funeral. I'm pretty good at sticking my foot in my mouth. Really. I can manage to say the wrong thing most of the time and I just don't like to take my chances when it comes to death. In our situation there wasn't really much anyone could say. We don't expect anyone to say much but just show support that you care and that doesn't even need to involve words.
As the dust settles and we have some time to review the situation, people are asking us how we're doing. I'm a quantitative guy so I'm inherently lost in emotional situations. Dealing with feelings, grief, loss and all the mushy stuff the counselors like is like being asked to vomit so people can watch. Suffice to say it is not my cup of tea.
But when I'm asked how I'm doing, I'd love to have a chart that would rate us. Maybe a 1-100 score where a score below 50 is an automatic prescription for antidepressants. I'm sure someone out there has some tool that would turn this qualitative situation into a quantitative score for me.
I would describe how we're doing with the following metaphor.
At the 18 week ultrasound with Megan's OB, we noticed a strong rotation over some warmer waters deep in the Atlantic Ocean that would most likely lead to a situation where we could feel some remnants of a storm. The following week in Cincinnati the tropical depression that had been detected was confirmed that it would hit us and it was looking like it would be a strong hurricane force storm. Through the weeks and months of appointments in both Indianapolis and Cincinnati the storm grew stronger and confirmation was given that we were in the direct path of the storm. We bought lumber and sealed our windows telling our family and friends it didn't look good and that it was a poor prognosis. As Megan grew and the baby reached record size, the waters had warmed and the storm grew to a category five aimed directly for us.
There was no way out. We called for help. People sent us provisions and helped us through a painstaking pregnancy where my wife endured three months of full-term size. The interstates were jammed with everyone else trying to leave with their possessions. It wouldn't have mattered if we could make it on the road because the hotels were full anyway. This storm was so fierce that no matter where we went we could not hide. Extra provisions were purchased and we stayed in a safe house with friends. They were comforting and they had plenty of food but we were in the eye.
Finally the storm hit on August 18th. While many prayed and watched the news (this blog) no one could save us from the lashing that hit us. Little Ephraim was born without the ability to breathe. That day was the saddest of my life and the direct hit was difficult to manage. Despite the support from others and secure bunker we had, the storm had hit us squarely.
In the following week after his death, we assessed the damage. There was physical and emotional damage. Fortunately the physical damage was not permanent but the emotional toll was catastrophic. This is a storm that will live in infamy. The very name of it (him) will be remembered like Sandy or Katrina. As we regroup as a family and rebuild our lives, we know we are not the same. Ephraim has changed us.
What has changed yet we don't know. We recently received back power and have started to resume our lives as normal. I'm able to return to work but progress is slow and there are delays bringing speeds up to normal. People around us understand that this is an extraordinary event and exceptions have been made. Progress is slower and there is post traumatic stress on all involved, not only those directly in the eye but also those just outside of it. We all are recovering from this life changing event.
But in the end, I think we can all say we have survived Hurricane Ephraim.
I've spent most of my adult life avoiding funerals. I don't know whether it is the finality of death, the general unease of everyone present or the lack of words needing to be spoken at a funeral. I'm pretty good at sticking my foot in my mouth. Really. I can manage to say the wrong thing most of the time and I just don't like to take my chances when it comes to death. In our situation there wasn't really much anyone could say. We don't expect anyone to say much but just show support that you care and that doesn't even need to involve words.
As the dust settles and we have some time to review the situation, people are asking us how we're doing. I'm a quantitative guy so I'm inherently lost in emotional situations. Dealing with feelings, grief, loss and all the mushy stuff the counselors like is like being asked to vomit so people can watch. Suffice to say it is not my cup of tea.
But when I'm asked how I'm doing, I'd love to have a chart that would rate us. Maybe a 1-100 score where a score below 50 is an automatic prescription for antidepressants. I'm sure someone out there has some tool that would turn this qualitative situation into a quantitative score for me.
I would describe how we're doing with the following metaphor.
At the 18 week ultrasound with Megan's OB, we noticed a strong rotation over some warmer waters deep in the Atlantic Ocean that would most likely lead to a situation where we could feel some remnants of a storm. The following week in Cincinnati the tropical depression that had been detected was confirmed that it would hit us and it was looking like it would be a strong hurricane force storm. Through the weeks and months of appointments in both Indianapolis and Cincinnati the storm grew stronger and confirmation was given that we were in the direct path of the storm. We bought lumber and sealed our windows telling our family and friends it didn't look good and that it was a poor prognosis. As Megan grew and the baby reached record size, the waters had warmed and the storm grew to a category five aimed directly for us.
There was no way out. We called for help. People sent us provisions and helped us through a painstaking pregnancy where my wife endured three months of full-term size. The interstates were jammed with everyone else trying to leave with their possessions. It wouldn't have mattered if we could make it on the road because the hotels were full anyway. This storm was so fierce that no matter where we went we could not hide. Extra provisions were purchased and we stayed in a safe house with friends. They were comforting and they had plenty of food but we were in the eye.
Finally the storm hit on August 18th. While many prayed and watched the news (this blog) no one could save us from the lashing that hit us. Little Ephraim was born without the ability to breathe. That day was the saddest of my life and the direct hit was difficult to manage. Despite the support from others and secure bunker we had, the storm had hit us squarely.
In the following week after his death, we assessed the damage. There was physical and emotional damage. Fortunately the physical damage was not permanent but the emotional toll was catastrophic. This is a storm that will live in infamy. The very name of it (him) will be remembered like Sandy or Katrina. As we regroup as a family and rebuild our lives, we know we are not the same. Ephraim has changed us.
What has changed yet we don't know. We recently received back power and have started to resume our lives as normal. I'm able to return to work but progress is slow and there are delays bringing speeds up to normal. People around us understand that this is an extraordinary event and exceptions have been made. Progress is slower and there is post traumatic stress on all involved, not only those directly in the eye but also those just outside of it. We all are recovering from this life changing event.
But in the end, I think we can all say we have survived Hurricane Ephraim.
Friday, August 22, 2014
Big Brothers
While Monday was an excruciating day in most respects, our two other sons were there to brighten the mood. Cael and Liam (6 and 4) have been eagerly awaiting the birth of their brother for months. Since we named him a few months ago, Ephraim, "Little E", has been a daily part of our family. They have prayed for him and nightly thanked God for his life. Ephraim was a very active child in the womb and they would feel him kick and hiccup.
A few weeks ago we were playing around with his name and found it fit very well into the song "Freeze-Frame" by The J. Geils Band. Our family has been substituting "Ephraim" into the song and singing and playing the song. (You can thank me now that the song will be in your head!)
During the pregnancy and when we would go for the frequent doctors visits we would remind the boys that we weren't sure what was going to happen with his life. Cael would say every couple weeks, "I hope Ephraim makes it," to which we said, "We do too," so this is not a total surprise.
When we received word from the NICU doctor that he would be on comfort care, we invited the boys in to meet their brother. Now, the medical staff had told us that the siblings of a child with birth defects will not recognize the brother as having anything wrong but simply as their brother. It was fascinating to watch the boys examine their brother and not realize the gravity of the situation even though there was a nurse helping him breathe for his entire life. Nevertheless, the boys took their time to do a full examination checking and counting the fingers and toes, looking for a cleft chin and removing the diaper to make sure he was a boy. Then Cael stuck Ephraim's toe up his nose just for fun saying, "Ephraim's picking my nose!"
After he passed we let the boys know who began to process it in their own way. We told them he went to heaven to be with Jesus and God had given him a free pass to heaven. Cael said, "When I get to heaven, I'm going to be his older brother." Upon hearing this, Liam's eyes lit up and he said, "And I'm going to be his older brother in heaven too!" excited that however short Little E's life was, Liam is now an older sibling. Then Cael added, "When I get to heaven, I'm going to stick Ephaim's head in the toilet and flush it!" Ahhh, brothers!
A few weeks ago we were playing around with his name and found it fit very well into the song "Freeze-Frame" by The J. Geils Band. Our family has been substituting "Ephraim" into the song and singing and playing the song. (You can thank me now that the song will be in your head!)
During the pregnancy and when we would go for the frequent doctors visits we would remind the boys that we weren't sure what was going to happen with his life. Cael would say every couple weeks, "I hope Ephraim makes it," to which we said, "We do too," so this is not a total surprise.
When we received word from the NICU doctor that he would be on comfort care, we invited the boys in to meet their brother. Now, the medical staff had told us that the siblings of a child with birth defects will not recognize the brother as having anything wrong but simply as their brother. It was fascinating to watch the boys examine their brother and not realize the gravity of the situation even though there was a nurse helping him breathe for his entire life. Nevertheless, the boys took their time to do a full examination checking and counting the fingers and toes, looking for a cleft chin and removing the diaper to make sure he was a boy. Then Cael stuck Ephraim's toe up his nose just for fun saying, "Ephraim's picking my nose!"
After he passed we let the boys know who began to process it in their own way. We told them he went to heaven to be with Jesus and God had given him a free pass to heaven. Cael said, "When I get to heaven, I'm going to be his older brother." Upon hearing this, Liam's eyes lit up and he said, "And I'm going to be his older brother in heaven too!" excited that however short Little E's life was, Liam is now an older sibling. Then Cael added, "When I get to heaven, I'm going to stick Ephaim's head in the toilet and flush it!" Ahhh, brothers!
Funeral Service
We are preparing for Ephraim's service in Wabash. A service will be at 2 pm this Sunday, August 24th at Grandstaff-Hentgen Funeral Service. Burial following the service will be at Falls Cemetery.
Manchester Avenue Chapel
1241 Manchester Avenue
Wabash, Indiana 46992
(260) 563-8879
Memorial gifts may be given to:
Friends Church
3563 South State Road 13
Wabash, IN 46992
(260) 563-8452
Manchester Avenue Chapel
1241 Manchester Avenue
Wabash, Indiana 46992
(260) 563-8879
Memorial gifts may be given to:
Friends Church
3563 South State Road 13
Wabash, IN 46992
(260) 563-8452
Monday, August 18, 2014
Ephraim Makes His Arrival
After making it to the hospital last night we had to run through a
seemingly endless loop of doctors clarifying the plan for delivery. To
complicate things, the night docs were finishing a week of rotations at 7
am and were being replaced by the daytime docs. Clarifying and
confirming the procedure for delivery took a few hours.
After we had a plan, we tapped Ephraim's bladder once again to compress his unique and extremely large bladder. The doctors removed 1100 milliliters from him in preparation for his delivery. After a long prep period we entered the operating room and Ephraim Ross McCann was delivered at 12:03 pm on August 18, 2014 weighing 9 lbs and 4 ounces. He was immediately rushed to respiratory therapy where he was intubated.
After less than an hour, the NICU docs came to our room with very long faces and told us what we were so afraid and yet so prepared to hear. No matter the amount of oxygen, Ephraim's lungs were not developed to absorb and process oxygen. The enormous bladder and stomach from the distended abdomen had crowded out the lungs and left them with no room to develop. As we invited our family and friends to our room to meet our newest son we knew our time with him was limited. Finally we gathered to pray over Ephraim and thank God for his short but fruitful life. As we were praying around 3:25 pm his heart stopped beating and his spirit left his body. Our beautiful baby boy we just welcomed into the world left in just more than three hours.
The saddness of this situation is oppressive. Our hearts are very heavy even though this is what we expected to happen. No matter how many times we heard the "poor" prognosis, we seemed to remind ourselves of an anecdotal story of a bladder outlet obstruction gone right. Hope is interesting. No matter how bad we knew the situation was and how bleak the odds looked, we had a way of keeping the door to good results open. We had to keep the door open. It's the only way we could make it through this pregnancy.
And the outcome of this situation is overwhelming, but by no means the worst case scenario. Megan and I had been praying that we would not need to make challenging ethical decisions that we would wonder about for years. God answered these prayers. No years of treatment or dozens of surgeries trying to repair a severely damaged body. No experimental procedures, living in different cities trying to raise a family while one child receives specialized treatment. No partial treatments and mediocre results while struggling to keep a marriage going. God had grace on us. We didn't have to choose between bad and worse.
While we didn't get the healthy baby we wanted we still believe Ephraim will live up to the meaning of his name, "fruitful". His life has already touched many and caused us to connect in a powerful way to many others. This has been an incredible burden to carry and you have helped us carry it, fulfilling the law of Christ (Galatians 6:2). Months of meals, frequent lawn and garden care, cleaning our house, watching our children as we go to doctors' appointments and people praying for us from all corners of the globe are just a few ways our burden has been lightened. Thank you for serving us. Thank you for fulfilling the law of Christ.
In addition we have attempted to humble ourselves and ask for help from others, a pride killing act. An act so pride killing and humbling that it has actually helped us to create community. As you know, the healthy don't need a doctor and people who have "it" all together don't tend to be hungry for more community. And maybe that was the greatest fruit of all. Maybe God sent us Ephraim so we could experience more of Him through life-giving relationships honoring to God. I'd say that's fruit.
How is Megan doing?
Probably about what you would expect. Recovering from surgery, missing the boy she has been attached to for 35 weeks and dealing with a very long night and day of decisions has left her very tired. But she is joyful to have the friends she has shared this journey with.
Ephraim was born on the birthday of my grandfather, Ross Sachs, and thought "Ross" was a fitting middle name.
After we had a plan, we tapped Ephraim's bladder once again to compress his unique and extremely large bladder. The doctors removed 1100 milliliters from him in preparation for his delivery. After a long prep period we entered the operating room and Ephraim Ross McCann was delivered at 12:03 pm on August 18, 2014 weighing 9 lbs and 4 ounces. He was immediately rushed to respiratory therapy where he was intubated.
After less than an hour, the NICU docs came to our room with very long faces and told us what we were so afraid and yet so prepared to hear. No matter the amount of oxygen, Ephraim's lungs were not developed to absorb and process oxygen. The enormous bladder and stomach from the distended abdomen had crowded out the lungs and left them with no room to develop. As we invited our family and friends to our room to meet our newest son we knew our time with him was limited. Finally we gathered to pray over Ephraim and thank God for his short but fruitful life. As we were praying around 3:25 pm his heart stopped beating and his spirit left his body. Our beautiful baby boy we just welcomed into the world left in just more than three hours.
The saddness of this situation is oppressive. Our hearts are very heavy even though this is what we expected to happen. No matter how many times we heard the "poor" prognosis, we seemed to remind ourselves of an anecdotal story of a bladder outlet obstruction gone right. Hope is interesting. No matter how bad we knew the situation was and how bleak the odds looked, we had a way of keeping the door to good results open. We had to keep the door open. It's the only way we could make it through this pregnancy.
And the outcome of this situation is overwhelming, but by no means the worst case scenario. Megan and I had been praying that we would not need to make challenging ethical decisions that we would wonder about for years. God answered these prayers. No years of treatment or dozens of surgeries trying to repair a severely damaged body. No experimental procedures, living in different cities trying to raise a family while one child receives specialized treatment. No partial treatments and mediocre results while struggling to keep a marriage going. God had grace on us. We didn't have to choose between bad and worse.
While we didn't get the healthy baby we wanted we still believe Ephraim will live up to the meaning of his name, "fruitful". His life has already touched many and caused us to connect in a powerful way to many others. This has been an incredible burden to carry and you have helped us carry it, fulfilling the law of Christ (Galatians 6:2). Months of meals, frequent lawn and garden care, cleaning our house, watching our children as we go to doctors' appointments and people praying for us from all corners of the globe are just a few ways our burden has been lightened. Thank you for serving us. Thank you for fulfilling the law of Christ.
In addition we have attempted to humble ourselves and ask for help from others, a pride killing act. An act so pride killing and humbling that it has actually helped us to create community. As you know, the healthy don't need a doctor and people who have "it" all together don't tend to be hungry for more community. And maybe that was the greatest fruit of all. Maybe God sent us Ephraim so we could experience more of Him through life-giving relationships honoring to God. I'd say that's fruit.
How is Megan doing?
Probably about what you would expect. Recovering from surgery, missing the boy she has been attached to for 35 weeks and dealing with a very long night and day of decisions has left her very tired. But she is joyful to have the friends she has shared this journey with.
Ephraim was born on the birthday of my grandfather, Ross Sachs, and thought "Ross" was a fitting middle name.
Breaking News
Just an update for those following along at home, we have arrived at the hospital after the water broke around 1am Monday. We are as ready as we can be and we are happy to have made it to 35 weeks. More updates to come...
Tuesday, August 12, 2014
"The Waiting Is the Hardest Part"
Tom Petty had this one right. After the daily concerns of making it to the hospital before the baby makes his arrival and the added focus of trying to attend a wedding four hours from the hospital at close to 34 weeks, now that we are in Cincinnati, it seems like the calm before the storm. All we have to do is wait...and plan.
We had a three hour "routine" appointment Monday morning with the doctors. I say doctors because we've met every maternal fetal specialist in the practice, plus the new guys. I tend to forget that we're getting older. We're only thirty-four but the new docs in medical school look really young! I guess we're just showing our age. We hope we can help them prepare for the next case like this.
The docs have us in a tight spot with this one. On the one hand, the best incubator for Ephraim is mom's belly and that is where he is going to have the best odds for improving lung finishing and making sure all systems are ready to go before takeoff. However, as I've mentioned several times, my wife's belly has been larger than full term for more than a month. This does not necessarily mean she will go into labor but many multiple-birth pregnancies are preterm due in part to the size of the uterus. At thirty-four weeks we've just crossed a major milestone in obstetrics which puts us in to the best odds other than full term (38-40 weeks). The doctors at Children's Hospital want the baby as developed as possible so they can manage relatively more mature organs. For now we are monitoring fetal movement and we will report on any decreases in his activity.
So we wait.
We had a three hour "routine" appointment Monday morning with the doctors. I say doctors because we've met every maternal fetal specialist in the practice, plus the new guys. I tend to forget that we're getting older. We're only thirty-four but the new docs in medical school look really young! I guess we're just showing our age. We hope we can help them prepare for the next case like this.
The docs have us in a tight spot with this one. On the one hand, the best incubator for Ephraim is mom's belly and that is where he is going to have the best odds for improving lung finishing and making sure all systems are ready to go before takeoff. However, as I've mentioned several times, my wife's belly has been larger than full term for more than a month. This does not necessarily mean she will go into labor but many multiple-birth pregnancies are preterm due in part to the size of the uterus. At thirty-four weeks we've just crossed a major milestone in obstetrics which puts us in to the best odds other than full term (38-40 weeks). The doctors at Children's Hospital want the baby as developed as possible so they can manage relatively more mature organs. For now we are monitoring fetal movement and we will report on any decreases in his activity.
So we wait.
Sunday, August 10, 2014
Safely In Cincinnati
We have safely arrived in Cincinnati. For most of you this may seem like a trivial or irrelevant issue but I have been a bit concerned the past few weeks with the logistics given the distance from Wabash to Cincinnati (about four hours by auto). I had to talk through options of getting Megan and baby to the hospital together or separately. Her local OB in Huntington wanted us to drive straight to the hospitals in Indy or Cincinnati, knowing he would be extremely limited in options to treat Ephraim locally.
Due to the severity of the birth defect and the resulting size of the baby and potential needs we need to be in a tertiary care facility. There are just two in Indiana and of course here in Cincinnati and they all require multiple hours in the car, which would have been interesting given the fact that Liam was born in two hours. The doctors discussed helicopters and delivering in ambulances and I am thrilled we now don't have to do that!
So where are we, you ask? We have the great fortune of staying with friends of my parents who live about one mile from the University of Cincinnati hospital where Megan will be delivering. They were friends of my parents from before my parents were married. They have been incredibly hospitable, cooking and spending time with us and truly the only reason this is possible. The boys are down here with us and we will be waiting and doing the check ups until Ephraim makes his arrival. If he doesn't want to come out by the end of the month, the doctor will induce.
You may know that tonight is a full moon. The nurses in labor and delivery at the hospital told me they staff according to the full moon and it is more than an old wives tale that the gravitational pull has an impact on the babies being born. As of yet, no signs of his arrival.
Also, thank you to the person who graciously mowed our lawn Saturday.
Due to the severity of the birth defect and the resulting size of the baby and potential needs we need to be in a tertiary care facility. There are just two in Indiana and of course here in Cincinnati and they all require multiple hours in the car, which would have been interesting given the fact that Liam was born in two hours. The doctors discussed helicopters and delivering in ambulances and I am thrilled we now don't have to do that!
So where are we, you ask? We have the great fortune of staying with friends of my parents who live about one mile from the University of Cincinnati hospital where Megan will be delivering. They were friends of my parents from before my parents were married. They have been incredibly hospitable, cooking and spending time with us and truly the only reason this is possible. The boys are down here with us and we will be waiting and doing the check ups until Ephraim makes his arrival. If he doesn't want to come out by the end of the month, the doctor will induce.
You may know that tonight is a full moon. The nurses in labor and delivery at the hospital told me they staff according to the full moon and it is more than an old wives tale that the gravitational pull has an impact on the babies being born. As of yet, no signs of his arrival.
Also, thank you to the person who graciously mowed our lawn Saturday.
Saturday, August 9, 2014
Wedding Day
We've made it to the wedding day in Wabash. Only 24 hours before we relocate to Cincinnati for the baby and it has been very quiet on the pregnancy front. Last night we enjoyed talking about my sister and her fiance at their rehearsal dinner and were very happy to be able to be present for the festivities. My sister is marrying a great guy and we are happy to (finally) welcome him into the family. I would consider it a major success to make it though today and safely to Cinci before the baby makes his arrival.
Speaking of arrivals, due to this amazing country we live in and the incredible healthcare we have here (particularly at Cincinnati Children's Hospital), we know so much about Ephraim going into the delivery that would have been unknowable only a decade ago. Lung size, kidney size, heart function are just a few of the organs which the doctors have been monitoring. While they are unsure of much until he makes his arrival, Megan's maternal fetal specialist (MFS), Dr. Jaekle, has given us a very realistic rundown of what he is watching and where we should place our expectations. The top three organ functions they are watching during and after delivery are: 1. lungs, 2. kidneys, 3. bladder.
1. Lungs - This probably goes without saying but if he doesn't have the lung function/development he can't make it and there is no substitute for this. If he is premature, there are steroids they can administer to further development and help his lungs work but this is not the same as the lungs developing during the pregnancy. As of tomorrow, Ephraim is 34 weeks and well past the stage of basic lung development.
This is the most important function and also what Dr. Jaekle has continuously warned us about. While he specifically states that he does not predict what will happen, he thinks the probability that the lungs have not developed is very high. For this reason, he doesn't believe there are going to be many hard decisions. Due to the size of the bladder and the crowding of the chest cavity, Dr. Jaekle has given us a prognosis of minutes to months.
2. Kidneys - As a non-science guy, I am amazed by the kidney. These organs are incredible and incredibly complicated! The doctors have spent hours looking at Ephraim's kidney's and assessing function. We have discussed dialysis and the impact that has on babies. Now the nephrologists (kidney docs, for you other non-medical people), have a different tone than the other docs we meet. After all, you only need 15% of your kidney's to function to do their job and keep you alive, and even less if you rely on a machine. In fact, Dr. Goebel said we really don't need the kidneys as we can keep people going completely on a machine imitating the role of the kidney (dialysis). However, he cautioned us that the outcomes are not great, there is still a relatively high loss rate. Also, it is a 24/7 job for 1-2 people for 2 years until the baby is ready for a transplant, of which he would have multiple throughout his life! Dr. Goebel has been fantastic dealing with our case passing us the latest studies showing life expectancies and outcomes of baby and children kidney cases. While he is a specialist dealing with just one organ, he witnesses the incredible turmoil and stress on families dealing with infant dialysis has made it known that this involves enormous sacrific on the part of the family.
Ephraim's kidneys have been dilated the entire pregnancy, They have been filled with urine the entire pregnancy which impairs development. It is estimated there is another 700 ml of urine in his kidneys. Everyone will be watching the kidneys the first few days.
Baby kidney work is a fairly new field. Cincinnati has been doing this work specifically on bladder outlet obstruction babies since 2004 and has had 47 cases come through. Although the statistics are far from rosy, there are success stories here.
3. Bladder - Due to the unprecedented size of Ephraim's bladder, this is a major concern. While the bladder is normally not a critical organ and usually can be repaired or reshaped, the presence of ascites prenatally indicates there are real challenges here. Ascites is a collection of urine outside the bladder in the abdomen where it has leaked through some outlet/hole. On a normal baby with bladder issues the docs put in a stint or valve to the stomach to drain the bladder. For Ephraim this is a major issue because if his bladder doesn't work he is not a transplant candidate, foregoing all decisions made on the kidney.
It has taken us a few months to understand and process these concerns. One of the questions I've had for the docs is what happens to these babies not born in a rich country in one of the best hospitals in the world. Their unanimous answer? They die. The doctors at Cincinnati have been excellent in setting expectations and allowing the parents to be a key team member in the care of their kids. Megan and I have delved into ethical concerns and the "gray" laws mandating certain treatment and not others. I've told the doctors that just because we can I'm not sure we should. I've been expecting the doctors to talk me into treatments and to jump in and be superheros, but they've been remarkably respectable in this case as only people who deal with life and death on a daily basis can be. Their body language has told me more about our case than what they have said.
I have a new appreciation for quality healthcare and the people who practice it.
Speaking of arrivals, due to this amazing country we live in and the incredible healthcare we have here (particularly at Cincinnati Children's Hospital), we know so much about Ephraim going into the delivery that would have been unknowable only a decade ago. Lung size, kidney size, heart function are just a few of the organs which the doctors have been monitoring. While they are unsure of much until he makes his arrival, Megan's maternal fetal specialist (MFS), Dr. Jaekle, has given us a very realistic rundown of what he is watching and where we should place our expectations. The top three organ functions they are watching during and after delivery are: 1. lungs, 2. kidneys, 3. bladder.
1. Lungs - This probably goes without saying but if he doesn't have the lung function/development he can't make it and there is no substitute for this. If he is premature, there are steroids they can administer to further development and help his lungs work but this is not the same as the lungs developing during the pregnancy. As of tomorrow, Ephraim is 34 weeks and well past the stage of basic lung development.
This is the most important function and also what Dr. Jaekle has continuously warned us about. While he specifically states that he does not predict what will happen, he thinks the probability that the lungs have not developed is very high. For this reason, he doesn't believe there are going to be many hard decisions. Due to the size of the bladder and the crowding of the chest cavity, Dr. Jaekle has given us a prognosis of minutes to months.
2. Kidneys - As a non-science guy, I am amazed by the kidney. These organs are incredible and incredibly complicated! The doctors have spent hours looking at Ephraim's kidney's and assessing function. We have discussed dialysis and the impact that has on babies. Now the nephrologists (kidney docs, for you other non-medical people), have a different tone than the other docs we meet. After all, you only need 15% of your kidney's to function to do their job and keep you alive, and even less if you rely on a machine. In fact, Dr. Goebel said we really don't need the kidneys as we can keep people going completely on a machine imitating the role of the kidney (dialysis). However, he cautioned us that the outcomes are not great, there is still a relatively high loss rate. Also, it is a 24/7 job for 1-2 people for 2 years until the baby is ready for a transplant, of which he would have multiple throughout his life! Dr. Goebel has been fantastic dealing with our case passing us the latest studies showing life expectancies and outcomes of baby and children kidney cases. While he is a specialist dealing with just one organ, he witnesses the incredible turmoil and stress on families dealing with infant dialysis has made it known that this involves enormous sacrific on the part of the family.
Ephraim's kidneys have been dilated the entire pregnancy, They have been filled with urine the entire pregnancy which impairs development. It is estimated there is another 700 ml of urine in his kidneys. Everyone will be watching the kidneys the first few days.
Baby kidney work is a fairly new field. Cincinnati has been doing this work specifically on bladder outlet obstruction babies since 2004 and has had 47 cases come through. Although the statistics are far from rosy, there are success stories here.
3. Bladder - Due to the unprecedented size of Ephraim's bladder, this is a major concern. While the bladder is normally not a critical organ and usually can be repaired or reshaped, the presence of ascites prenatally indicates there are real challenges here. Ascites is a collection of urine outside the bladder in the abdomen where it has leaked through some outlet/hole. On a normal baby with bladder issues the docs put in a stint or valve to the stomach to drain the bladder. For Ephraim this is a major issue because if his bladder doesn't work he is not a transplant candidate, foregoing all decisions made on the kidney.
It has taken us a few months to understand and process these concerns. One of the questions I've had for the docs is what happens to these babies not born in a rich country in one of the best hospitals in the world. Their unanimous answer? They die. The doctors at Cincinnati have been excellent in setting expectations and allowing the parents to be a key team member in the care of their kids. Megan and I have delved into ethical concerns and the "gray" laws mandating certain treatment and not others. I've told the doctors that just because we can I'm not sure we should. I've been expecting the doctors to talk me into treatments and to jump in and be superheros, but they've been remarkably respectable in this case as only people who deal with life and death on a daily basis can be. Their body language has told me more about our case than what they have said.
I have a new appreciation for quality healthcare and the people who practice it.
Wednesday, August 6, 2014
“How is your wife doing?”
There is one question I receive more than any and it is
this. Since I believe that is forefront
on many people’s minds, I thought I’d tackle that.
The due date for our little guy is late September, which puts us just past the 33 week mark. Instead of measuring around the 33 week mark for my wife, because of the issues in the pregnancy, she has measured full term for the last four weeks. This means everywhere she goes random strangers congratulate her and guess she is due immediately. She is not on bed rest and is still up and moving but moving very slowly. Her energy level is low, as expected.
Megan is a bit of a G. I. Jane and can handle quite a bit of pain and she still has a good attitude. I made a comment to a husband once that Megan’s first pregnancy was in the jungle where we lived with Cael, and he said, “If my wife were pregnant in the jungle, I’d either be divorced or dead!” Megan is a trooper. The ongoing support of family and friends has been great throughout this ordeal. As an unexpected benefit, people we would never have met have become friends during this pregnancy.
The doctors’ appointments have been very difficult throughout this pregnancy. From the initial diagnosis to the referral work and the second opinion, we kept hoping someone would say, “This isn’t so bad, we can fix this.” Unfortunately, they have never said that. It has been a wild ride that isn’t over yet and the stress of the current situation keeps us thinking day-to-day; a good thing.
We are back in Wabash this week. My sister (Joanna) is getting married to our new brother-in-law Ross this weekend in Wabash. We are very excited about seeing so many people and celebrating their marriage. As you just read above, we have been full term for a while and the risk of placental rupture increases each day. We’ve made the decision to deliver at the University Hospital at the University of Cincinnati adjoining the Children’s Hospital. We are traveling to Cincinnati this weekend and waiting until the baby arrives. So pray that there are no surprises before we arrive in Cincinnati Sunday.
The due date for our little guy is late September, which puts us just past the 33 week mark. Instead of measuring around the 33 week mark for my wife, because of the issues in the pregnancy, she has measured full term for the last four weeks. This means everywhere she goes random strangers congratulate her and guess she is due immediately. She is not on bed rest and is still up and moving but moving very slowly. Her energy level is low, as expected.
Megan is a bit of a G. I. Jane and can handle quite a bit of pain and she still has a good attitude. I made a comment to a husband once that Megan’s first pregnancy was in the jungle where we lived with Cael, and he said, “If my wife were pregnant in the jungle, I’d either be divorced or dead!” Megan is a trooper. The ongoing support of family and friends has been great throughout this ordeal. As an unexpected benefit, people we would never have met have become friends during this pregnancy.
The doctors’ appointments have been very difficult throughout this pregnancy. From the initial diagnosis to the referral work and the second opinion, we kept hoping someone would say, “This isn’t so bad, we can fix this.” Unfortunately, they have never said that. It has been a wild ride that isn’t over yet and the stress of the current situation keeps us thinking day-to-day; a good thing.
We are back in Wabash this week. My sister (Joanna) is getting married to our new brother-in-law Ross this weekend in Wabash. We are very excited about seeing so many people and celebrating their marriage. As you just read above, we have been full term for a while and the risk of placental rupture increases each day. We’ve made the decision to deliver at the University Hospital at the University of Cincinnati adjoining the Children’s Hospital. We are traveling to Cincinnati this weekend and waiting until the baby arrives. So pray that there are no surprises before we arrive in Cincinnati Sunday.
Monday, August 4, 2014
Backstory and Update
So you have seen that we are dealing with "bladder outlet obstruction" possibly Eagle-Barrett Syndrome more specifically. This is where the muscles of the abdomen don't form which allows the bladder to expand as there is nothing forcing it to evacuate. One of the key distinctions of this syndrome is there is generally low amniotic fluid as the baby's urine (amniotic fluid) is retained in his bladder rather than outside his body. This causes limited development of the lungs and is a fatal condition.
Our baby has had a perplexing condition of having too much amniotic fluid early in the pregnancy until week 30. This has the docs scratching their heads wondering if maybe his lungs have developed enough to not be a fatal condition. So around week 30, we did the first bladder tap to remove 1625 ml of urine from our baby's bladder. Eleven days after that tap, when we went to do another tap, we found he had low amniotic fluid. After withdrawing another 1600 ml of fluid on that trip the docs assumed that his amniotic fluid would be low for the rest of the pregnancy.
Okay, so here is where it gets very interesting; at today's appointment we find that Megan has gone from low amniotic fluid (oligohydramnios) to excess amniotic fluid (polyhydramnios) in the past nine days! I was informed this doesn't happen.
The docs are searching for explanations to this one.
Our baby has had a perplexing condition of having too much amniotic fluid early in the pregnancy until week 30. This has the docs scratching their heads wondering if maybe his lungs have developed enough to not be a fatal condition. So around week 30, we did the first bladder tap to remove 1625 ml of urine from our baby's bladder. Eleven days after that tap, when we went to do another tap, we found he had low amniotic fluid. After withdrawing another 1600 ml of fluid on that trip the docs assumed that his amniotic fluid would be low for the rest of the pregnancy.
Okay, so here is where it gets very interesting; at today's appointment we find that Megan has gone from low amniotic fluid (oligohydramnios) to excess amniotic fluid (polyhydramnios) in the past nine days! I was informed this doesn't happen.
The docs are searching for explanations to this one.
Ephraim
Ephraim (pronounced "e-frame") is named after a little boy we knew in Peru. You may remember him, he was a little boy with walking problems with whom Megan worked. We have a picture of him in a therapy room at the Refuge of Hope in October of 2006 while he is being assessed by the therapist Isaac, one of Megan's future co-workers. His father and mother pastored Emanuel Church and they started the first savings group, Banquito Emanuel, which went on to grow fivefold in the second year.
Ephraim was always a joy to be around. He had an indomitable spirit and was always more determined and had higher hopes for himself than anyone else had for him. While his legs had limited movement which kept him either in a wheelchair or on a custom walker (that one of you donated through us) he was always cheery and very ambitious.
Within two months of returning from Peru in May of 2010, we heard news that he had fallen in a pool at a church picnic and drowned. He was five years old.
It turns out that in his short life God used him to bring us to Ivon and Caleb Rios as an answer to Caleb’s prayers to improve the economic condition of his church and my prayers to start a savings group. God used Megan to treat Ephraim but also to build the relationship between the economic development arm of Food for the Hungry Pucallpa and their church, which was desperately praying for help in basic business and personal money management. (Caleb actually retrieved his journal one day and went back to show where he was praying for a Christan NGO, missionary or organization who can help them manage money and their businesses more effectively.) God used this boy to direct us where the doors were open.
Ephraim was just over one year old when we met him at the Refuge of Hope on our first visit there in October of 2006 and he died the summer of 2010 just after we left Peru. While there were many ways he was used in his life we cannot miss that almost his entire life existed during our short stay in the country.
The name means "fruitful" and we think it fit him very well.
Sunday, August 3, 2014
Really?! Four years?!
Well, it's good to write to you again, it's only taken us four years to update you on our lives! Let's consider this past few years our time of silence. If you were with us from 2004-2010 during our ministry in Peru, we want to fill you in on what has happened since then.
We were told reentry would be more difficult than leaving the States but it was hard to envision that beforehand. We now agree that integrating back into the States is harder.
We returned in May of 2010 just as the economy was still in the doldrums. Unemployment was 9.5% and I attempted to change careers from non-profit back to finance and accounting. After nine months of adjusting expectations to the workforce, I found a job at a local community bank near my (Paul) hometown of Wabash, Indiana. I thought banking was the closest industry to the type of work I was doing in Peru considering the type was called "Community Managed Microfinance". While I greatly enjoyed the company and people, after two and a half years I switched back to public accounting at a small firm in Wabash.
We have been through the worst of the enculturation and are relatively stable now. We are active in our church in Wabash which is a globally minded missions church. Our family, especially our boys, are doing very well in this faith community. It is exciting to see our boys grow in their faith there.
Speaking of the boys, Cael is six years old (can you believe it?!) and Liam is four. Our boys are as different as possible but they continue to overwhelm us with joy and energy! We are trying to savor the time we have right now with them because we know it is flying by.
Despite the nagging feeling of wanting to send out an update of our lives, I really haven't had a great motivation before now. I want to update some and fill the rest in on the situation of our youngest son.
Megan is now 33 weeks pregnant with our third son, Ephraim. We were told at week 19 that he has a birth defect referred to generally as a bladder outlet obstruction. This has varying severity but ours is a severe case with a poor prognosis. After several consultations we have chosen to give birth in Cincinnati. We are in the process of relocating there for the birth.
How is Megan doing? As with any pregnancy she is tired but with this one she is particularly taxed. The baby has a very, very large bladder. We hate to have this distinction but his bladder is the largest any doctor has seen. Twice we have had the bladder tapped removing over 1600 ml from the baby's bladder each time (that is almost a 2 liter of fluid!). In fact, the ultrasound machine calculates body weight based on the measurements of each organ and they put Ephraim's weight at 20 pounds! Needless to say we are very concerned about the implications for mom and baby.
So what do we want in this situation? Miraculous healing and divine intervention? Absolutely! However improbable we know our God is the God of miracles. But what if that doesn't happen here? Megan was reading recently in the book of Daniel about Shadrach, Meshach and Abed-nego. We like their response to the king when he asked if God was going to save them from the fiery furnace they were about to be thrown in. Their response was something to the effect that "Yes, He certainly can, but even if He doesn't, He is still the living God and we're not bowing to you."
We like their perspective. Too many times we define God's attributes by the outcomes in our lives. We think, "If something bad happens then God must not love me." How can bad things happen to good people? Or it was just a lack of faith. Or maybe you've been to a church that teaches if you are a good Christian with enough faith these things won't happen to you. I think this is a shallow view of faith. Faith is being sure God is a God of love and interpreting our experience in light of His character, not the circumstance. The faith hall of fame in Hebrews chapter 11 is full of heroes who faced terrible circumstances and verse 39 says they did not receive what was promised, at least not while they were alive. There is a danger in many churches that teach that right living always lead to great circumstances. We would love for this to be true but it is not supported by the bible.
How can I help? We appreciate your support and concern. Please pray for a safe delivery for mom and baby and that we are able to handle decisions and outcomes.
We plan to keep this site updated as we learn more so we will use this as a the breaking news for everyone.
We were told reentry would be more difficult than leaving the States but it was hard to envision that beforehand. We now agree that integrating back into the States is harder.
We returned in May of 2010 just as the economy was still in the doldrums. Unemployment was 9.5% and I attempted to change careers from non-profit back to finance and accounting. After nine months of adjusting expectations to the workforce, I found a job at a local community bank near my (Paul) hometown of Wabash, Indiana. I thought banking was the closest industry to the type of work I was doing in Peru considering the type was called "Community Managed Microfinance". While I greatly enjoyed the company and people, after two and a half years I switched back to public accounting at a small firm in Wabash.
We have been through the worst of the enculturation and are relatively stable now. We are active in our church in Wabash which is a globally minded missions church. Our family, especially our boys, are doing very well in this faith community. It is exciting to see our boys grow in their faith there.
Speaking of the boys, Cael is six years old (can you believe it?!) and Liam is four. Our boys are as different as possible but they continue to overwhelm us with joy and energy! We are trying to savor the time we have right now with them because we know it is flying by.
Despite the nagging feeling of wanting to send out an update of our lives, I really haven't had a great motivation before now. I want to update some and fill the rest in on the situation of our youngest son.
Megan is now 33 weeks pregnant with our third son, Ephraim. We were told at week 19 that he has a birth defect referred to generally as a bladder outlet obstruction. This has varying severity but ours is a severe case with a poor prognosis. After several consultations we have chosen to give birth in Cincinnati. We are in the process of relocating there for the birth.
How is Megan doing? As with any pregnancy she is tired but with this one she is particularly taxed. The baby has a very, very large bladder. We hate to have this distinction but his bladder is the largest any doctor has seen. Twice we have had the bladder tapped removing over 1600 ml from the baby's bladder each time (that is almost a 2 liter of fluid!). In fact, the ultrasound machine calculates body weight based on the measurements of each organ and they put Ephraim's weight at 20 pounds! Needless to say we are very concerned about the implications for mom and baby.
So what do we want in this situation? Miraculous healing and divine intervention? Absolutely! However improbable we know our God is the God of miracles. But what if that doesn't happen here? Megan was reading recently in the book of Daniel about Shadrach, Meshach and Abed-nego. We like their response to the king when he asked if God was going to save them from the fiery furnace they were about to be thrown in. Their response was something to the effect that "Yes, He certainly can, but even if He doesn't, He is still the living God and we're not bowing to you."
We like their perspective. Too many times we define God's attributes by the outcomes in our lives. We think, "If something bad happens then God must not love me." How can bad things happen to good people? Or it was just a lack of faith. Or maybe you've been to a church that teaches if you are a good Christian with enough faith these things won't happen to you. I think this is a shallow view of faith. Faith is being sure God is a God of love and interpreting our experience in light of His character, not the circumstance. The faith hall of fame in Hebrews chapter 11 is full of heroes who faced terrible circumstances and verse 39 says they did not receive what was promised, at least not while they were alive. There is a danger in many churches that teach that right living always lead to great circumstances. We would love for this to be true but it is not supported by the bible.
How can I help? We appreciate your support and concern. Please pray for a safe delivery for mom and baby and that we are able to handle decisions and outcomes.
We plan to keep this site updated as we learn more so we will use this as a the breaking news for everyone.
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