Tuesday we went back to Odessa expecting a quick visit (or as quick as they get around there). Luckily we got to see our original specialist this time. He might come into the room in bright yellow "scrubs" head to toe with chest hair beaming at the top, but that man is the greatest doctor ever. I love him. And for Christmas I may get him a Tommy Bahama gift card.
He went into more detail with what was seen on the MRI. A combination of my native Arkansas tongue and not knowing any medical jargon soon played out. He began to describe that on the MRI an ureterocele was confirmed. In the past I thought they were saying ureter cell and then I thought ureteral seal. Those things are made up; they do not exist. But an ureterocele is very real and may have been the nasty little culprit all along.
Let me see if I can get this straight...
An ureterocele is a birth defect that happens when the intricately designed ureter (connects kidney to bladder) and the intricately designed bladder do not fuse together perfectly. The ureterocele fills with fluid. In diagrams it almost looks like a blister. The biggest cause for concern with these little guys is kidney damage.
What they believe happened was this ureterocele formed and when it filled with fluid got stuck in the urethra (Connects the bladder to outside world). That cause the bladder obstruction that we first thought was LUTO. As AnnLouise grew the ureterocele was pulled by the ureter (as it is still connected to it) and ultimately popped the ureterocele out of the urethra. This allowed her bladder to drain and have normal amniotic fluid levels but had left lots of questions of how that happened.
Now. We have this situation where she has an ureterocele that is no longer in the urethra but could still be dangerous for the kidney. When she is born they will run tests to confirm all of this. Her surgery to remove this ureterocele may be basic in the big scheme of things. They will most likely use a laser scope to go through the urethra and remove the ureterocele. From what I gather this is about a 30 minute procedure.
We will have to talk to Houston and of course be patient as they continue to monitor her during and after pregnancy. They may decide to wait on the surgery as it seems she has at least 1 good kidney, a functioning bladder, good heart & lungs. But they may decide to do it immediately. Either way we will be in Houston. Doc told us Tuesday if this is all that is going on then we could be looking at a week in Houston after delivery!
I shouldn't get my hopes up like this, but I can just barely contain myself. The thought of all we've been through and now we may be looking at a 30 minute surgery and 1 week in the hospital. Sign me up.
My friend DeeAnn gave me a sign several years ago that says "Faith is not belieiving God can but knowing God will." Through this process faith has taken a deeper meaning for me. Yes, I had faith in God. I had faith He had us lifted high. But now I'm intimately learning faith...that through the blood of Christ we can approach the throne of God with prayer and worship and know without fear that He who promised is faithful (see Hebrew 10:19-23).
You all have encouraged us every step of this journey. Today I hope I can encourage you. As the prophet Habakkuk once wrote and the writer of Hebrews recalled, "For, yet a little while, and the coming one will come and will not delay; but my righteous one shall live by faith, and if he shrinks back, my soul has no pleasure in him." (Hebrews 10:37-38)
BUT! We are not of those who shrink back and are destroyed, but of those who have faith and preserve their souls. (Hebrews 10:39)
I'm speaking on this topic on New Year's Day at the sweet church I grew up in. If you're in the area, it would be great to see you at Calvary Baptist! Until then...let us be those people who have faith and perservere.
Avery
Thursday, December 22, 2016
Tuesday, December 13, 2016
Our Journey Through Fetal Medicine: Quick Update
Yesterday we went to our weekly ultrasound. I was upset we didn't get to see the specialist we are used to yet again, but we were very happy to hear nothing has changed. This doctor is perhaps overly cautious, so the fact he was happy with what he saw and said he would see us in a week was great news!
When making our appointment for next week, we said we only wanted to see our regular specialist. It is just too late in the game for a new doctor to try to catch up. Since no one has any idea what is going on and so many doctors are getting involved, it just seems best to stick with the doctor who has seen us through all of this. Of course I'm also hoping he says not to come every week.
We go back to our specialist out here next week and then Houston right after Christmas. The hunt for housing has really worn me down. By nature I'm a pretty frugal person, but I also like to live in a good, safe area. I don't need fluff. But security, well, yes. It has been difficult to find something right in the middle of inadequate and excess. We plan to drive by a few places when in Houston next and start narrowing it down. Hopefully we will also have more of an idea of what to expect after delivery.
It is hard to believe we leave next week for Arkansas. Once we get back we will only have about a month before we head on to Houston. I am very sad about leaving our home and friends and church for so long. I never knew how much Midland was home until I was forced to leave it. Now it seems incomprehensible to uproot our lives here, even if only for a few months. During this time of our lives we've leaned on our friends and church family more than ever, and I don't know how to do day-to-day life without them. It sure has opened my eyes to all of the blessings we live in everyday.
We are trying to be as optimistic as possible with our time in Houston. The rodeo will be going on while we are there, so of course I hope to see at least one night. Houston does have so much to offer right at your fingertips, and it will be fun to experience what all is there. (If I tell myself this enough, it is bound to come true.😊 Midland is still a metropolis to me. I feel like Houston is a bit out of my league.)
I may not update after next week because there is so little to say right now, but once we know something more I'll be sure to let you all know. Thanks again for your continued prayers. I sound like a broken record, but we couldn't have made it to this point without you praying on our behalf. It means the absolute world to us.
Have a merry Christmas!
Avery
When making our appointment for next week, we said we only wanted to see our regular specialist. It is just too late in the game for a new doctor to try to catch up. Since no one has any idea what is going on and so many doctors are getting involved, it just seems best to stick with the doctor who has seen us through all of this. Of course I'm also hoping he says not to come every week.
We go back to our specialist out here next week and then Houston right after Christmas. The hunt for housing has really worn me down. By nature I'm a pretty frugal person, but I also like to live in a good, safe area. I don't need fluff. But security, well, yes. It has been difficult to find something right in the middle of inadequate and excess. We plan to drive by a few places when in Houston next and start narrowing it down. Hopefully we will also have more of an idea of what to expect after delivery.
It is hard to believe we leave next week for Arkansas. Once we get back we will only have about a month before we head on to Houston. I am very sad about leaving our home and friends and church for so long. I never knew how much Midland was home until I was forced to leave it. Now it seems incomprehensible to uproot our lives here, even if only for a few months. During this time of our lives we've leaned on our friends and church family more than ever, and I don't know how to do day-to-day life without them. It sure has opened my eyes to all of the blessings we live in everyday.
We are trying to be as optimistic as possible with our time in Houston. The rodeo will be going on while we are there, so of course I hope to see at least one night. Houston does have so much to offer right at your fingertips, and it will be fun to experience what all is there. (If I tell myself this enough, it is bound to come true.😊 Midland is still a metropolis to me. I feel like Houston is a bit out of my league.)
I may not update after next week because there is so little to say right now, but once we know something more I'll be sure to let you all know. Thanks again for your continued prayers. I sound like a broken record, but we couldn't have made it to this point without you praying on our behalf. It means the absolute world to us.
Have a merry Christmas!
Avery
Saturday, December 10, 2016
Our Journey Through Fetal Medicine: Delivery Options Updates and Henry
In our last update we had gotten great news from Houston and had some hope we would be able to deliver in Odessa. The doctor in Houston called a couple days later after the team of specialists including our fetal specialist in Odessa, pediatric urologist, genetic counselor, and fetal specialists in Houston all met to discuss what should happen from here. They felt that while the chance for immediate surgery is small, it is still a chance (unintentionally feeling a little like Dumb & Dumber with that quote). So...we will be delivering in Houston. It is not the worst news ever and feel more comfortable delivering there, but it definitely has put a new spin into any plans we could've ever made. We will move to Houston in early February and stay until AnnLouise is sent home. And they have no idea when that may be. 2 days, 2 months, 2 years...we won't know until she's born.
That same week we went back to the specialist in Odessa, but the doctor we typically see was not in the office. After speaking with him on the phone and reviewing our case, the new doctor felt AnnLouise's bladder and 1 kidney may have gotten bigger. We were quite surprised by this as 2 days earlier there was no indication of this. Nonetheless he wants us to go back once a week for ultrasounds to ensure her amniotic fluid levels remain normal. Her entire diagnosis has been hanging on these levels, so we know it is vital that these stay normal. If they begin to go down, we will have to deliver early.
Overall, we are staying positive since this was a new doctor to AnnLouise. These situations are hard to come into at 26 weeks, but we are thankful they are so diligent and ensure that any small changes are not overlooked. We will go back Monday at 28 weeks and hopefully our regular specialist will be back in the office and can give us a bit more guidance for now.
We are also scheduled to head back to Houston at the end of this month. We will fly down from Arkansas during the holidays to meet with our new OB (the 3rd OB we have seen during this pregnancy! Hopefully this is the one who will actually deliver this baby), the urologist, and the fetal specialist. I can't get over how many amazing doctors have walked us through this pregnancy. They are all some of the most wonderful doctors I've ever met.
In other news Henry tested a little high for lead at his 12 month checkup, so I had to take him for more blood work. He did great, but it is never fun to hold your baby down for a needle. I called almost every day for 3 weeks for the results but kept being told the results weren't in yet. Finally I got the results myself from the lab and his results were high.
That afternoon Cash and I went to the pediatrician's office and met with the COO. Then the doctor met with us and immensely apologized for the oversight and took responsibility. He said he had the results before Thanksgiving but somehow their system let our son slip through the cracks and the news had not made it to us. That's always a good feeling.
He was very apologetic, and for that I'm thankful. It just didn't help to add this to our plates. In good news his levels weren't so high he needs to start meds. We do, however, have to get more blood work done in a few months in Houston since we will be living there by then.
At this point we are ready for Christmas and hopefully just some good rest! We have a lot to do in the next couple of months, but we are trying to take it day by day and enjoy this time of year with Henry. We took him tonight to enjoy Christmas lights. Watching him gobble down chocolate chip cookies and awe at the lights was good for the soul. I rocked him to sleep later and couldn't help but think that despite all the hardships in the past few months, nights like tonight are what make life worthwhile. We may have trials to endure over the next few months, but tonight I just want to live in the giggles of the little guy and savor his cuddles he gave as he drifted off to sleep.
That same week we went back to the specialist in Odessa, but the doctor we typically see was not in the office. After speaking with him on the phone and reviewing our case, the new doctor felt AnnLouise's bladder and 1 kidney may have gotten bigger. We were quite surprised by this as 2 days earlier there was no indication of this. Nonetheless he wants us to go back once a week for ultrasounds to ensure her amniotic fluid levels remain normal. Her entire diagnosis has been hanging on these levels, so we know it is vital that these stay normal. If they begin to go down, we will have to deliver early.
Overall, we are staying positive since this was a new doctor to AnnLouise. These situations are hard to come into at 26 weeks, but we are thankful they are so diligent and ensure that any small changes are not overlooked. We will go back Monday at 28 weeks and hopefully our regular specialist will be back in the office and can give us a bit more guidance for now.
We are also scheduled to head back to Houston at the end of this month. We will fly down from Arkansas during the holidays to meet with our new OB (the 3rd OB we have seen during this pregnancy! Hopefully this is the one who will actually deliver this baby), the urologist, and the fetal specialist. I can't get over how many amazing doctors have walked us through this pregnancy. They are all some of the most wonderful doctors I've ever met.
In other news Henry tested a little high for lead at his 12 month checkup, so I had to take him for more blood work. He did great, but it is never fun to hold your baby down for a needle. I called almost every day for 3 weeks for the results but kept being told the results weren't in yet. Finally I got the results myself from the lab and his results were high.
That afternoon Cash and I went to the pediatrician's office and met with the COO. Then the doctor met with us and immensely apologized for the oversight and took responsibility. He said he had the results before Thanksgiving but somehow their system let our son slip through the cracks and the news had not made it to us. That's always a good feeling.
He was very apologetic, and for that I'm thankful. It just didn't help to add this to our plates. In good news his levels weren't so high he needs to start meds. We do, however, have to get more blood work done in a few months in Houston since we will be living there by then.
At this point we are ready for Christmas and hopefully just some good rest! We have a lot to do in the next couple of months, but we are trying to take it day by day and enjoy this time of year with Henry. We took him tonight to enjoy Christmas lights. Watching him gobble down chocolate chip cookies and awe at the lights was good for the soul. I rocked him to sleep later and couldn't help but think that despite all the hardships in the past few months, nights like tonight are what make life worthwhile. We may have trials to endure over the next few months, but tonight I just want to live in the giggles of the little guy and savor his cuddles he gave as he drifted off to sleep.
Monday, November 28, 2016
Our Journey Through Fetal Medicine: Thanksgiving
Was last week really Thanksgiving?! Well, to keep in the spirit of the holidays I will still be thankful this week. We have so much for which to praise God.
Our Friends/Family
I have no idea where we would be in this journey without our friends and family. Y'all have been prayer warriors, confidants, shoulders to cry on. You have been present. It is not lost on us that you carried us through the past 26 weeks.
Our Doctors
What a team of specialists we were blessed with. From Odessa to Houston and all in between our doctors have coordinated and shared results, research, and knowledge to help us through this pregnancy. Even when we had the most grim outlooks our hearts could imagine, it was the doctors and genetic counselors who let us ask questions and cry whenever we needed. They did not shut their doors when it was a fatal diagnosis. They still let us come into the office and receive ultrasounds so that our hearts could be full. I don't think in this day and age we hear enough about the quality of doctors we have in this country, but I am so thankful for our healthcare and the level of understanding our doctors have.
The Holidays
Last week we spent a week in San Antonio and all of South Texas visiting with Cash's family. It was a sweet time to relax and let Henry enjoy playing with his cousins. We saw all of the grandparents and most of his aunts and uncles. I'm sure my sister-in-law woke up this morning extra thankful she was only cooking for the 5 of them, but she hosted us so graciously for a week. A WEEK, Y'ALL!! A week of her mother-in-law, father-in-law, brother-in-law, sister-in-law, and nephew in her space. I think I heard the pope was giving her sainthood. She also sent us with three large boxes of girl clothes. I have never been in such a sea of pink, but I couldn't help but ooh and aww over every outfit I pulled out. (Side note: please, no one, send clothes for Ann Louise. The girl now has enough to last through her senior year of high school!)
MRI Results
Last, but certainly not least, today we received preliminary MRI results from last week. The doctor said it was all positive! The bladder and kidneys look the same as they do on the ultrasounds, so no surprises there. The liver is good (which was a relief after the ultrasound showing possible signs of a spot last week). And the biggest of all was the colon: they see nothing abnormal!! That rules out some nasty stuff such as the megacystic microcolon and cloaca. That call relieved us from worrying about multiple organ transplants and/or another fatal diagnosis. This was huge.
The doc also said she will meet with the team tomorrow and visit with the urologist. Hopefully Wednesday we know more about where we may have to deliver. At this time she is leaning toward Odessa instead of Houston because it does not look like Ann Louise will have to have an immediate surgery. Due to her thick bladder chances are high that she will need some sort of surgery or a permanent catheter at some point after birth, but that will depend on what the entire team of specialists conclude as well as postnatal monitoring. Great news would be to deliver in Odessa.
Midland does not have a NICU. We know certainly Ann Louise will need ultrasounds after she is born, so at minimum we will be in Odessa. However, Odessa does not have the type of pediatric surgeons Ann Louise may need, so a good chance still remains that we will temporarily move to Houston, Dallas, or Forth Worth for a couple months. If they think she can wait on the surgeries, we will deliver in Odessa. If there is a chance the surgery is imminent after birth, then we will go to a major medical center.
The Actual MRI
I am thankful we were able to have the MRI. It is hard for me to say I'm thankful to have gone through it. I've never had an MRI and had no idea what to expect. As they were walking me into the room, they said to expect 2 hours in the machine. TWO HOURS!!! As I went head first into an enclosed capsule I thought no way was I going to make it. I almost started crying.
It was 11:30 and I could not eat until after the testing. The only thing I had that morning was some apple juice and 2 Benadryl. I was so sleepy but had to keep holding my breath as they took different images so the baby would be as still as possible. After about an hour I got hot and started thinking I couldn't make it. I finally called to the technician and told him I was too hot and he needed to get me out of there. He said surprisingly he was on his last one. I thought okay, I can make it just a few more seconds. Then my whole body started going numb, and all I could feel below my shoulders was tingling. I could feel myself starting to pass out and started yelling to get me out of there, but he was still on his last image. As I braced myself to hang in there, I kept thinking, "They are going to find me in this machine plum passed out."
Finally, he came in and said that the baby cooperated and he had gotten all the images in only one hour. Well, shoot. Just one hour of my entire body including my arms strapped to a gurney whilst not moving.
The doctor was with him the entire MRI and had headed up to her office to load the images. They felt certain we would get preliminary results that afternoon. After grabbing a quick bite, we went in for our ultrasound with a different doctor. It showed nothing really new, so the doc had us head back to San Antonio and said she would call that afternoon with MRI results.
We did not hear from her until this morning, so it was a long wait. As I mentioned the MRI was going to reveal some big, nasty things. It was the pinnacle of this stretch in the pregnancy. So while we tried to avert our attention, it was hard not to wonder all weekend if we had another fatal diagnosis or if we had a healthy baby. That's a pretty big difference in results.
Patience has become our game. We are resting now that these major complications have been ruled out. Knock on wood, but the next big news we expect to get will be after Ann Louise is born. I can hardly believe that as I type it. God has been so faithful to us. From holding our hearts when we found out our dear little girl would be born without a chance at life to the miracle he performed on her body to now giving us peace as we continue to wait, God has shown us time and time again that He does not leave us nor forsake us. The past 26 weeks have been perhaps the longest of my life, but they have also been some of the best.
That sounds a bit crazy to say these are the best weeks of my life. But we have been able to rest in Christ and receive one of His miracles while growing our marriage and leaning so much on one another. This Thanksgiving I'm thankful for so much, but perhaps I'm most thankful for God making me wait all those years ago when I wanted to be married so badly but had not a {good} prospect in mind. I look at my husband today and know without a doubt God gave me the greatest earthly gift in him. He is my absolute best friend, and I couldn't make it through these trials and times of worry without him sitting there by me in the doctor's office or holding me while I cry in the middle of the night.
Last week as we waited to get checked in for the MRI, Cash reached over and put his hand on my back and said a prayer. It was silent. I don't have any idea what he said. (Okay, maybe an idea..) But while we sat there I said my own prayer thanking God for all of his miracles but mostly for the one sitting next to me.
Our Friends/Family
I have no idea where we would be in this journey without our friends and family. Y'all have been prayer warriors, confidants, shoulders to cry on. You have been present. It is not lost on us that you carried us through the past 26 weeks.
Our Doctors
What a team of specialists we were blessed with. From Odessa to Houston and all in between our doctors have coordinated and shared results, research, and knowledge to help us through this pregnancy. Even when we had the most grim outlooks our hearts could imagine, it was the doctors and genetic counselors who let us ask questions and cry whenever we needed. They did not shut their doors when it was a fatal diagnosis. They still let us come into the office and receive ultrasounds so that our hearts could be full. I don't think in this day and age we hear enough about the quality of doctors we have in this country, but I am so thankful for our healthcare and the level of understanding our doctors have.
The Holidays
Last week we spent a week in San Antonio and all of South Texas visiting with Cash's family. It was a sweet time to relax and let Henry enjoy playing with his cousins. We saw all of the grandparents and most of his aunts and uncles. I'm sure my sister-in-law woke up this morning extra thankful she was only cooking for the 5 of them, but she hosted us so graciously for a week. A WEEK, Y'ALL!! A week of her mother-in-law, father-in-law, brother-in-law, sister-in-law, and nephew in her space. I think I heard the pope was giving her sainthood. She also sent us with three large boxes of girl clothes. I have never been in such a sea of pink, but I couldn't help but ooh and aww over every outfit I pulled out. (Side note: please, no one, send clothes for Ann Louise. The girl now has enough to last through her senior year of high school!)
 |
| Did I mention the girls whooped the boys in Battle of the Sexes? |
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| Henry, Cash, and Mamaw--our first time to see her stand on her own since her stroke 2 years ago. She's a rockstar and where Ann Louise gets part of her name. |
MRI Results
Last, but certainly not least, today we received preliminary MRI results from last week. The doctor said it was all positive! The bladder and kidneys look the same as they do on the ultrasounds, so no surprises there. The liver is good (which was a relief after the ultrasound showing possible signs of a spot last week). And the biggest of all was the colon: they see nothing abnormal!! That rules out some nasty stuff such as the megacystic microcolon and cloaca. That call relieved us from worrying about multiple organ transplants and/or another fatal diagnosis. This was huge.
The doc also said she will meet with the team tomorrow and visit with the urologist. Hopefully Wednesday we know more about where we may have to deliver. At this time she is leaning toward Odessa instead of Houston because it does not look like Ann Louise will have to have an immediate surgery. Due to her thick bladder chances are high that she will need some sort of surgery or a permanent catheter at some point after birth, but that will depend on what the entire team of specialists conclude as well as postnatal monitoring. Great news would be to deliver in Odessa.
Midland does not have a NICU. We know certainly Ann Louise will need ultrasounds after she is born, so at minimum we will be in Odessa. However, Odessa does not have the type of pediatric surgeons Ann Louise may need, so a good chance still remains that we will temporarily move to Houston, Dallas, or Forth Worth for a couple months. If they think she can wait on the surgeries, we will deliver in Odessa. If there is a chance the surgery is imminent after birth, then we will go to a major medical center.
 |
| our traditional going to the doctor for Ann Louise picture |
The Actual MRI
I am thankful we were able to have the MRI. It is hard for me to say I'm thankful to have gone through it. I've never had an MRI and had no idea what to expect. As they were walking me into the room, they said to expect 2 hours in the machine. TWO HOURS!!! As I went head first into an enclosed capsule I thought no way was I going to make it. I almost started crying.
It was 11:30 and I could not eat until after the testing. The only thing I had that morning was some apple juice and 2 Benadryl. I was so sleepy but had to keep holding my breath as they took different images so the baby would be as still as possible. After about an hour I got hot and started thinking I couldn't make it. I finally called to the technician and told him I was too hot and he needed to get me out of there. He said surprisingly he was on his last one. I thought okay, I can make it just a few more seconds. Then my whole body started going numb, and all I could feel below my shoulders was tingling. I could feel myself starting to pass out and started yelling to get me out of there, but he was still on his last image. As I braced myself to hang in there, I kept thinking, "They are going to find me in this machine plum passed out."
Finally, he came in and said that the baby cooperated and he had gotten all the images in only one hour. Well, shoot. Just one hour of my entire body including my arms strapped to a gurney whilst not moving.
The doctor was with him the entire MRI and had headed up to her office to load the images. They felt certain we would get preliminary results that afternoon. After grabbing a quick bite, we went in for our ultrasound with a different doctor. It showed nothing really new, so the doc had us head back to San Antonio and said she would call that afternoon with MRI results.
We did not hear from her until this morning, so it was a long wait. As I mentioned the MRI was going to reveal some big, nasty things. It was the pinnacle of this stretch in the pregnancy. So while we tried to avert our attention, it was hard not to wonder all weekend if we had another fatal diagnosis or if we had a healthy baby. That's a pretty big difference in results.
Patience has become our game. We are resting now that these major complications have been ruled out. Knock on wood, but the next big news we expect to get will be after Ann Louise is born. I can hardly believe that as I type it. God has been so faithful to us. From holding our hearts when we found out our dear little girl would be born without a chance at life to the miracle he performed on her body to now giving us peace as we continue to wait, God has shown us time and time again that He does not leave us nor forsake us. The past 26 weeks have been perhaps the longest of my life, but they have also been some of the best.
That sounds a bit crazy to say these are the best weeks of my life. But we have been able to rest in Christ and receive one of His miracles while growing our marriage and leaning so much on one another. This Thanksgiving I'm thankful for so much, but perhaps I'm most thankful for God making me wait all those years ago when I wanted to be married so badly but had not a {good} prospect in mind. I look at my husband today and know without a doubt God gave me the greatest earthly gift in him. He is my absolute best friend, and I couldn't make it through these trials and times of worry without him sitting there by me in the doctor's office or holding me while I cry in the middle of the night.
Last week as we waited to get checked in for the MRI, Cash reached over and put his hand on my back and said a prayer. It was silent. I don't have any idea what he said. (Okay, maybe an idea..) But while we sat there I said my own prayer thanking God for all of his miracles but mostly for the one sitting next to me.
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| Henry giving Dada kisses while I melt. |
Tuesday, November 22, 2016
Our Journey Through Fetal Medicine: What Normal Looks Like
Tonight Cash and I are back in Houston awaiting tomorrow's MRI and ultrasound. We have waited on this for 6 weeks, but suddenly today my heart has been heavy and anxious.
First, we left our little man in Victoria where Cash's parents are keeping him overnight at his grandparents' house. Henry needed a nap, so as we were leaving I put him in the crib. As I slid my arm away he grabbed me and was screaming. I walked out and wanted to cry. I hate leaving him. He has no idea when he wakes up that he won't see us for another 24 hours. Although we obviously have to do it, it rips my heart out to walk away. He was asleep before we even left and got in a good 2 hour nap, but as I sit here tonight his little face is all I can dream about.
We were told last night that we'd get to stay in the Ronald McDonald House. I was very happy with this news because I'm already tired of doctor bills, hotels, gas, restaurants. It is a blessing that places like this exist. Except it feels really different...not a way I expected.
I don't know if I ever realized how good doing good things makes ME feel. Sure I've tried to do good for others, but at the end of it I can always sit back and say, "Man, I got more out of that than they did." I have always felt confident during those times of my life. But tonight Cash and I have been on the receiving end. And that feels a lot different than those good vibes of doing good.
I sit here thankful and appreciative in so many ways for the room we are staying in and the food we were blessed with. But tonight as I stood in a line to receive my plate of food prepared for us by an organization looking for volunteer hours, I felt a bit helpless. Sad. Needy. Yikes...as a Christian we like to be the ones giving, not the ones needing. It is hard and vulnerable to be needy.
As I took my plate and said thank you, Cash and I found a spot by the window. I looked around realizing everyone there had a really sad story. It is one thing to be the one in your friend group or Bible study needing some big prayers and all the attention is given to you. It is another thing to be one of many whose only hope rests in doctors and (maybe) God.
A family was sitting close to us and I overheard the young mother say that when they got here last July she was pregnant, so they have been here nearly a year and a half. They are waiting for her child to reach 22 pounds to get a transplant. I could barely eat. My heart sank for her, for the other stories I don't know, and the fear for our future.
We quickly finished and decided to go for a drive. Once we were in the car I started bawling. I don't want the Ronald McDonald House to be my normal for a year. I want my cushy life in my manicured neighborhood with my adoring husband and cute baby. Not a fiber in my being yearns for this to be how we raise Henry or spend even a week of our lives. That sounds selfish. It probably is. But it is real.
Tonight brought me back to the reality we are facing. A few well spoken prayer requests and nice blog posts don't cut it. We are facing a battle with Ann Louise's body and a battle with Satan's grasp of our minds and fears and anxieties. I've asked you for prayers before, but tonight I beg you for them. Pray for our MRI tomorrow. Pray for our hearts as we miss Henry. Pray for our minds as we continue to endure the anxiety of what lies before us. And please, pray for the peace of God to come into this place, that hope isn't found solely in doctors but in God alone.
You, my sweet friends, have prayed us to the cross. Now we must pray us past the grave.
First, we left our little man in Victoria where Cash's parents are keeping him overnight at his grandparents' house. Henry needed a nap, so as we were leaving I put him in the crib. As I slid my arm away he grabbed me and was screaming. I walked out and wanted to cry. I hate leaving him. He has no idea when he wakes up that he won't see us for another 24 hours. Although we obviously have to do it, it rips my heart out to walk away. He was asleep before we even left and got in a good 2 hour nap, but as I sit here tonight his little face is all I can dream about.
We were told last night that we'd get to stay in the Ronald McDonald House. I was very happy with this news because I'm already tired of doctor bills, hotels, gas, restaurants. It is a blessing that places like this exist. Except it feels really different...not a way I expected.
I don't know if I ever realized how good doing good things makes ME feel. Sure I've tried to do good for others, but at the end of it I can always sit back and say, "Man, I got more out of that than they did." I have always felt confident during those times of my life. But tonight Cash and I have been on the receiving end. And that feels a lot different than those good vibes of doing good.
I sit here thankful and appreciative in so many ways for the room we are staying in and the food we were blessed with. But tonight as I stood in a line to receive my plate of food prepared for us by an organization looking for volunteer hours, I felt a bit helpless. Sad. Needy. Yikes...as a Christian we like to be the ones giving, not the ones needing. It is hard and vulnerable to be needy.
As I took my plate and said thank you, Cash and I found a spot by the window. I looked around realizing everyone there had a really sad story. It is one thing to be the one in your friend group or Bible study needing some big prayers and all the attention is given to you. It is another thing to be one of many whose only hope rests in doctors and (maybe) God.
A family was sitting close to us and I overheard the young mother say that when they got here last July she was pregnant, so they have been here nearly a year and a half. They are waiting for her child to reach 22 pounds to get a transplant. I could barely eat. My heart sank for her, for the other stories I don't know, and the fear for our future.
We quickly finished and decided to go for a drive. Once we were in the car I started bawling. I don't want the Ronald McDonald House to be my normal for a year. I want my cushy life in my manicured neighborhood with my adoring husband and cute baby. Not a fiber in my being yearns for this to be how we raise Henry or spend even a week of our lives. That sounds selfish. It probably is. But it is real.
Tonight brought me back to the reality we are facing. A few well spoken prayer requests and nice blog posts don't cut it. We are facing a battle with Ann Louise's body and a battle with Satan's grasp of our minds and fears and anxieties. I've asked you for prayers before, but tonight I beg you for them. Pray for our MRI tomorrow. Pray for our hearts as we miss Henry. Pray for our minds as we continue to endure the anxiety of what lies before us. And please, pray for the peace of God to come into this place, that hope isn't found solely in doctors but in God alone.
You, my sweet friends, have prayed us to the cross. Now we must pray us past the grave.
Friday, November 18, 2016
Bridge of Hope
For those of you who have followed my blog for some time, you may remember this post I did almost two years ago after Cash and I hosted two boys from Uganda. We were heartbroken when they left, and we have thought about them daily since they have been gone. Last year about this time we learned the organization they were with was having issues and ultimately was dissolving. We had no idea what the boys were going through or if they were getting to go to school or what.
Cash texted what we thought was their choir leader Henry's number. He even got a few responses. Later on we found out this was not Henry we were communicating with.
So for about 6 months we were crushed and thought we would never know what the boys were doing or how they were being taken care of. We had to hope in the Lord that He had His mighty hand on it.
This summer I received an email from our priest that said the previous organization was referring a new organization to the sponsors. The new organization, Bridge of Hope African Ministries, would take over sponsorship of all the former Asante choir children and several other children in the villages. I immediately got online to search this new organization and could not believe my eyes when I saw Henry--the former Asante choir director--was the founder of BOHAM! I emailed the address listed for the organization and in no time heard back from Henry. He could not believe we had found him!
What we did not know last year and during this entire time of waiting to know what was happening was that Henry had started BOHAM even before Asante dissolved. He felt the Lord calling Him to do this bigger work. In the interim Asante dissolved and would ultimately recommend BOHAM, but they could not give any church or sponsorship information to BOHAM. Henry had taken in most of the choir children, in particular one of the boys we hosted--Eric. He asked Eric if he remembered Cash and I, and Eric responded, "Uncle, how could you even ask me that? Of course I do!" He told Eric he wanted so deeply to find us but was unsure how he was going to.
Once we had gotten back in touch with Henry this summer, we learned the boys were doing well and would still be going to school this fall. Henry even offered for us to skype with Eric, but it was in the midst of our initial doctor's appointments with Ann Louise so time just fell away from us. By the time we had picked ourselves back up, Eric had already left for the fall term of boarding school.
Henry emailed that he would be in the States from October-December, so I worked with our priest to get him scheduled to come to Midland and speak at our church. I am still in shock that after all this time and all the distance we were able to host Henry for nearly a week. He was a light in our house during that time, always singing whether he was working in his room or in the shower. Always singing.
We were able to give him a good West Texas welcome starting with Friday night football.
On Saturday morning members of the clergy, missions team, and vestry came over for brunch to meet Henry and get to know more in depth the ministry he has started in such a needed place in the world.
Later that day Cash took him to the gun range, because we live in Texas and Henry wanted to get the whole Texas feel. He shared that only a select few can have guns in Uganda, so this was pretty big for him to get to go to the gun range. They shot rifles, pistols, and the AR. I think they both had a good time!
On Sunday he spoke at both church services and shared his story. At 3 years old he lost both parents and was taken in by his grandmother. She was put in touch with an orphanage who connected Henry to the Afriacan Children's Choir. He toured with them until he was 7. Afterwards he was able to go to school and ultimately graduate from college. When you listen to his story and how he vowed to God to give back after what others had done for him, you cannot help but feel as if you need to do something. Our church and the people in it were amazing to BOHAM. They really stepped up and let God do the rest.
That night he got to share his experience and ministry with my in-laws. They had met the boys a couple years ago and were excited to be back in touch with such an awesome ministry. I could sit and listen to Henry share his experience and watch their expressions every day. It is truly something incredible to get to be a part of, even for just a short time.
Little Henry loved Uganda Henry being in our home. When Uganda Henry would start singing in the back bedroom, Little Henry would crawl as fast as he could with his head down trying to get to his room before I scooped him up. He loved when Uganda Henry would pick him up and play with him. I loved sitting back and watching two worlds come together. Perhaps the most incredible part of the entire week to me was thinking of how God orchestrated such different lives to be a part of the same thing. Cash and I growing up in the States have no real comprehension for what Henry has seen and done in his life. But God allowed us a moment of time into that life where we could give what we had--a house, a few meals, a friendship.
Already we are missing our friend and the joy he brought into our days. We cannot wait to visit him in his homeland (one day--when I am finally not pregnant! ha) and see all of the children. Our hearts have forever been torched with a love for the people of Uganda.
If you would like to hear more about Henry's story, the mission of BOHAM, or how you can sponsor a child please visit their website: https://boham.org/. You will never regret opening your heart to such a precious man and ministry.
Cash texted what we thought was their choir leader Henry's number. He even got a few responses. Later on we found out this was not Henry we were communicating with.
So for about 6 months we were crushed and thought we would never know what the boys were doing or how they were being taken care of. We had to hope in the Lord that He had His mighty hand on it.
This summer I received an email from our priest that said the previous organization was referring a new organization to the sponsors. The new organization, Bridge of Hope African Ministries, would take over sponsorship of all the former Asante choir children and several other children in the villages. I immediately got online to search this new organization and could not believe my eyes when I saw Henry--the former Asante choir director--was the founder of BOHAM! I emailed the address listed for the organization and in no time heard back from Henry. He could not believe we had found him!
What we did not know last year and during this entire time of waiting to know what was happening was that Henry had started BOHAM even before Asante dissolved. He felt the Lord calling Him to do this bigger work. In the interim Asante dissolved and would ultimately recommend BOHAM, but they could not give any church or sponsorship information to BOHAM. Henry had taken in most of the choir children, in particular one of the boys we hosted--Eric. He asked Eric if he remembered Cash and I, and Eric responded, "Uncle, how could you even ask me that? Of course I do!" He told Eric he wanted so deeply to find us but was unsure how he was going to.
Once we had gotten back in touch with Henry this summer, we learned the boys were doing well and would still be going to school this fall. Henry even offered for us to skype with Eric, but it was in the midst of our initial doctor's appointments with Ann Louise so time just fell away from us. By the time we had picked ourselves back up, Eric had already left for the fall term of boarding school.
Henry emailed that he would be in the States from October-December, so I worked with our priest to get him scheduled to come to Midland and speak at our church. I am still in shock that after all this time and all the distance we were able to host Henry for nearly a week. He was a light in our house during that time, always singing whether he was working in his room or in the shower. Always singing.
We were able to give him a good West Texas welcome starting with Friday night football.
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| Midland High vs. Odessa High |
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| Henry explaining BOHAM and life in Uganda to members of the Vestry |
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| gun range |
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| getting sponsors for all the kids! |
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| sharing with the in-laws |
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| the Henrys |
If you would like to hear more about Henry's story, the mission of BOHAM, or how you can sponsor a child please visit their website: https://boham.org/. You will never regret opening your heart to such a precious man and ministry.
Wednesday, November 2, 2016
Our Journey Through Fetal Medicine: Praise God From Whom All Blessings Flow
Doctors' appointments are getting more spread out it seems for now, and our updates aren't as frequent. We have been in this limbo of not knowing anything yet having to wait until Ann Louise gets bigger to be able to see much else. Finally, we have some more news to share!
Last week they called to tell us the results of the amniocentesis. Of everything they can test for prenatally on the chromosomes, they saw nothing! This was great news. Most people are aware of the major genetic, chromosome, and neural tube abnormalities such as Down's, Trisomy 13, and Spina Bifida. Even before this test they were not thinking Ann Louise had any of these conditions that you commonly hear about; they mostly were testing for those very rare conditions that either were not on their radar or they themselves had never seen. But all reports showed no signs of any of these rare conditions.
When I spoke to the genetic counselor, I asked if she had a list of everything that had been ruled out in that test. However, she said many of these conditions do not even have names as they are so rare and the easiest thing would be for us to breathe a sigh of relief that our little one doesn't have them. I trust her immensely, so on we went happy as larks.
Yesterday I had an ultrasound with my specialist back in Odessa. I've had a lot of questions from folks asking which doctors I'm even seeing right now. We have a regular OB, an Odessa fetal specialist, and a Houston fetal specialist. The OB does the basic things he would for any pregnant woman. The specialists are working together to determine Ann Louise's condition, and to make it easier on us we only have to drive to Odessa for many checkups instead of going all the way to Houston for all of them. Texas is a big state! It takes almost as long to get to Houston as it does for us to go visit my family in Arkansas, so only driving 20 minutes to Odessa is a huge burden lifted. And technically my Odessa specialist does come to Midland, but I love the ultrasound tech in Odessa so much I'd rather drive to have him.
So yesterday I found myself on the road to Odessa sans Cash. It was my first appointment where he could not go since he had been summoned to jury duty this week...and of course with our luck he got selected for the jury. Because why not?
I preferred to go by myself if he couldn't go, but I didn't realize how much I lean on him during those drives and hours in the waiting room and in the midst of the appointments. Right before I left Henry would not quit playing with the plunger and toilet bowl cleaner, and I started bawling. (Like, why?! Why are those fun toys?!) I wanted to talk to Cash and have him there, but as you know he can't have his phone during trial. His work is fairly lax and his boss has been awesome to let him just come with me whenever, so it was a new world for me to be without him.
Luckily things did not take too long this time before the ultrasound tech came to get me. He was measuring every part of Ann Louise's body, every minute part of her brain, her little hands and feet. I started asking him what the measurements were and how they compared to a normal growth chart, and he couldn't believe that she is absolutely normal in growth. Even her kidneys which we had worried about so much were looking great: one was right under 7 mm and one was 4 mm. He explained that at 7 mm the doctors begin to have terms (that I don't remember) for them, but he said her kidneys were not to this point and in fact had not grown disproportionately since the last ultrasound he did.
Once he got all the measurements, he said she was in the 51st percentile! It is hard to believe she is looking so normal and right on average with her age. I asked about her abdomen and does it seem to be disproportionately large compared to the rest of her body. He said actually no! Even with the fluid still built up in the bladder, her abdomen was only in the 59th percentile. If she were born today, you would not even notice the inside of her abdomen was enlarged. God...He is amazing.
As I was asking the tech all these questions, he stopped for a minute and his tears started flowing. He said, "Mrs. Pullin, I pray for you and your daughter every night. This is a first for me to witness. I remember the day the doctor said it was fatal if it was a girl. And then a few days later when I did the ultrasound, we saw it was a girl. I hurt so much for you and your husband then. I have prayed so hard. And now I get to see her kicking and playing and yawning. And the doctors are blown away. This has been amazing to see from where we started to where we are."
Of course I started crying as he was talking. We talked about God a lot and His faithfulness to us. We talked about how it has changed both of our lives and being more gentle to the kids we already have. We talked about his deployments to Iraq and Afghanistan and how this job has changed him from the hard man he was when he left the military. I could have hugged his neck...if I would not have had ultrasound jelly on me and my full belly exposed.
It was an amazing moment to share with him. Cash and I both love him to our core and will never forget his excitement the day he thought Ann Louise's bladder had gone down (and it had). A lot of the times when I think about our miracle, I think about our ultrasound tech and had he not been with us every step of the way no one may have noticed her bladder had shrunk and her fluid levels were normal. He caught that. We can't repay him for it, but seeing his heart for his job and his true devotion to seeing us through with Ann Louise is something I will never forget.
Next the doctor came in and said Ann Louise was looking great. They still have some things they want to rule out at the MRI in 3 weeks (such as the microcolon, cloaca, etc.), but they were very hopeful at this point. He told me about his favorite patient he had ever had. It was a little boy he had diagnosed with LUTO, and much like Ann Louise his body just started making normal fluid levels and looking great. The little boy has gone on to live a perfectly normal life. His mom would take him once a year to urology appointments, and when she did she and the little boy would visit the doctor. Doc told me it was amazing to see that little boy grow and thrive. What he ultimately determined with him was that his kidneys had started functioning too early.
A baby's kidneys do not start functioning until 14 weeks because up until that point the urethra (that allows urine to pass from the bladder to the outside) is hard. At about 14 weeks the urethra begins to open and the kidneys start functioning. The doctors are starting to think Ann Louise's kidneys started functioning too soon. Without the urethra opened, the fluid built up in the bladder showing LUTO. Perhaps when the urethra did begin to open is when her body started releasing the fluid and looking more normal.
I was ecstatic! I asked, "So, I need to plan for annual urology appointments but everything looks good?" He chuckled and told me not to start planning college graduation. We have a long way to go. However, they feel more optimistic at this point and the early functioning kidneys are what they are leaning toward. The MRI in 3 weeks will rule out some major issues that we PRAY she does not have as they are brutal to everyone involved.
I also asked about the sunken chest (pectus). He looked at it and said it was not major and told me about a friend he had in high school who had had pectus. The only thing with it is how you feel about it. Even as she gets older and ultimately hits puberty, it should not cause issues. He said if she was self-conscious about it then she could find the nearest plastic surgeon to fix it. I said only when she can pay for it herself; we have spent enough before she is even born! He laughed at that and ensured it was not a worry for us at this point.
He did not want me leaving thinking we were in the clear, and I know we have many miles to go before they rule everything out. But you better believe I am praising my God for the miracles He keeps providing to Ann Louise and to us. Right now we are praying for sustained growth and that these very rare conditions such as megacystic microcolon and cloaca are ruled out in 3 weeks. We have come so far in this 22 week journey we have been on.
I hardly have a moment pass throughout the day that I'm not amazed. Amazed with the doctors who continue to provide hope and understanding. Amazed with our friends who have loved us so dearly. Amazed with Ann Louise and her little body that fights incredibly hard. And amazed with God, who even in 2016 when it seems like our world is crazy and in turmoil and hopeless, shows He is the same God that created the Heavens and the Earth. He is the same God who not only brought the Israelites out of Egypt but also gave them the Promised Land. He is the same God who called David to slay Goliath and go on to rule the lands. He is the same God who stood in the flames with Shadrach, Meshach, and Abednego. The same God of Ruth, Peter, Timothy. The same God who sent His Son to not just die but also rise again. He is the same God today as He was all those times before. And He will be that same God tomorrow too.
After the appointment and Cash got out of jury duty, we met up with some friends at Rosa's. As we were walking in we saw a mother and son who are family friends of Cash's whom he has known since he was a little boy in Farmington, New Mexico. She asked the latest on Ann Louise, and we got to share with her more positive news. She told us how she has shared our story with friends and co-workers, many of whom are not Christians. She got tears in her eyes as she said that through Ann Louise God is being shared and testified that one lady in particular is beginning to notice that a God she never believed in is creating miracles.
I'll be honest. I don't want to go through this. I would never sign up for it given the chance, even if I knew the outcome. It's not really the excitement of motherhood I was searching for. But I remember: when God called Esther for such a time as this, she was terrified to go before the king and plead for her people but she did it with God's strength (and encouragement from a faithful uncle). When God called Mary to give birth to our King, she ran to Elizabeth scared but with affirmation from God (and support from her cousin and fiance) she saw Jesus through to his crowning of creation. I'm not Esther or Mary. I'm not even close. But God gives us those stories to draw His strength and to see His power. My goodness. If these women can risk their selves and nations yet steadfastly walk in faith, then surely to goodness I can finish up 18 weeks of a scary pregnancy with the hope and knowledge that the God of yesterday, today, and tomorrow will continue to perform miracles in Ann Louise's body and in my heart. Yet even if He chooses to not restore Ann Louise's body fully, we can rest knowing His a good, good Father who loves us despite our fears and anxieties and just plain humanness. He never promised a life without pain. He promised an inherited Kingdom without pain when we live this life with the faith that He is God.
And if that isn't enough, I have other exciting news! Cash is on his way right now to pick up our friend Henry who is in the States from Uganda. If you have followed my blog for a couple of years, you may remember a post I did about two little boys we kept from Uganda before we were ever even pregnant. I have so much to share on this praise in another post on another day. For now I will say this...
We had lost touch with those boys and their choir leader Henry after the program they were in dissolved due to some financial issues with the African partners. When we heard that a new organization had formed, Bridge of Hope African Ministries, we began researching it. And right there as the founder of this very organization was the former choir leader Henry! We got back in touch with him and have been able to keep up with the boys and hope to Skype with them when they get back from boarding school over Christmas break!!! In the interim Henry came to the States to raise awareness and funds for BOHAM, and he is staying with us for the next week. We can barely contain ourselves and are looking so forward to seeing him!
Over the past few months God has displayed himself to us in many ways. We are incredibly thankful for Ann Louise's little body and for our re-connection with the precious boys from Uganda we met nearly 2 years ago. Praise God for His many, many blessings. Some days it is little miracles that often times I take for granted. Some days it is news that a once fatal diagnosis is now a miracle and someone all the way around the world is back in your life. Praise God from whom all blessings flow!
Tuesday, October 25, 2016
Our Journey Through Fetal Medicine: The Quiet Hours
I'm updating from my phone tonight because I want to spend time with my husband who is simultaneously Christmas shopping on his phone and watching Game 1 of the World Series. I'm not a huge baseball kind of girl (in March it sounds fun to me but by June I'm uhhh...over it), but I married into a baseball family that may excommunicate me if I say that outloud. Seeing how I love my husband more than anything in this world, I'll gladly sit and watch the game with him just so I can see him enjoy it. What you do for love! Anyway, hopefully this post looks normal coming from my phone.
We have had no updates, test results, or appointments in 2 weeks. Sometimes I forget we are even still in the thick of things since I don't have a constant reminder. It has been a nice rest for the soul. Soon enough we will be getting more information in, so we are enjoying a pretty normal day-to-day for now.
On Saturday we put up new shutters Cash made for the house and watched the Razorbacks forget they were playing a football game. It was the day Ann Louise's funeral was supposed to be. Instead it was just kind of a normal day. I sat down that night and felt her kicking and playing. Oh, the mighty works of God!
The other day I wrote about the friends, family, and strangers who have reached out to us. I can't get over it. While I hate going through this, the people who have loved us so deeply during this time have flat out blown me away. I can't even say Thank You to everyone. You all have inspired me to do more in everyday little things.
What seems like it may not be a big deal, trust me--to someone whose heart is hurting, it is HUGE! Many moments when I felt I couldn't go on, a friend would offer just the right thing at the right time. It is amazing to see how people use their talents. You don't have to be a doctor and go to Africa to touch a soul. Sometimes you just need to knock on your neighbor's door with a bag of cookies.
I mentioned the bear being made for us. I picked it up today. No words.
So many emotions filled me when I got in the car. It is beautiful with Ann Louise's heartbeat inside that plays when you squeeze it. A poem was also written to pay tribute to what the bear means. It is one of the most special gifts I've ever been given. As I sat in my car and listened to her little heartbeat while reading the poem, I lost it. The flood of emotions of what it would've been like to hear that had we not been given a miracle rushed to me. And yet I could feel her kick and remind me we are not done here--she still has so much to do. That bear, it will always hold a special place in my heart.
We have had no updates, test results, or appointments in 2 weeks. Sometimes I forget we are even still in the thick of things since I don't have a constant reminder. It has been a nice rest for the soul. Soon enough we will be getting more information in, so we are enjoying a pretty normal day-to-day for now.
On Saturday we put up new shutters Cash made for the house and watched the Razorbacks forget they were playing a football game. It was the day Ann Louise's funeral was supposed to be. Instead it was just kind of a normal day. I sat down that night and felt her kicking and playing. Oh, the mighty works of God!
The other day I wrote about the friends, family, and strangers who have reached out to us. I can't get over it. While I hate going through this, the people who have loved us so deeply during this time have flat out blown me away. I can't even say Thank You to everyone. You all have inspired me to do more in everyday little things.
What seems like it may not be a big deal, trust me--to someone whose heart is hurting, it is HUGE! Many moments when I felt I couldn't go on, a friend would offer just the right thing at the right time. It is amazing to see how people use their talents. You don't have to be a doctor and go to Africa to touch a soul. Sometimes you just need to knock on your neighbor's door with a bag of cookies.
I mentioned the bear being made for us. I picked it up today. No words.
So many emotions filled me when I got in the car. It is beautiful with Ann Louise's heartbeat inside that plays when you squeeze it. A poem was also written to pay tribute to what the bear means. It is one of the most special gifts I've ever been given. As I sat in my car and listened to her little heartbeat while reading the poem, I lost it. The flood of emotions of what it would've been like to hear that had we not been given a miracle rushed to me. And yet I could feel her kick and remind me we are not done here--she still has so much to do. That bear, it will always hold a special place in my heart.
The poem reads:
To my precious parents...
Although we are not together,
We will never be really apart-
'Cause before I went to Heaven
I left you my beating heart.
I'm here inside this teddy bear,
Which bears my precious name.
His job is to always remind you
That my heart is a "living" flame.
So when you feel the need to know
That I am not really gone-
Just hug my bear, and I'll be there...
My heart forever lives on!
Someone I don't even know did that for us. My heart is touched in the deepest of ways. Thank you to that person I may not ever meet. And thank you to all of our friends who have stood by us and held us up during the dark days, the miracle moments, and these quiet hours that tick so slowly. I thank God for each of you.
Xoxo-
Avery
Sunday, October 16, 2016
Our Journey Through Fetal Medicine: Houston Is Just One Step Closer to You
For the next week we (im)patiently waited for our visit to Houston. Up to this point we had had a lot of emotions ranging from hope to wanting to give up. Some days people would say they were amazed we were making it. I can't lie; I was amazed myself, because I knew in my heart that so many times I wanted to quit.
Before we had known everything we knew at this point (but after we knew it was fatal), my sister asked how could she tell people to pray for us specifically. I remember telling her, "I'd want you to pray for a miscarriage." Gasp.
That sounds horrendous I'm sure. But at so many times throughout this journey the words of my OB rang loudly in my memory: there are worse things than a miscarriage. No, I would never in a normal, healthy pregnancy pray for that. Crap, in a pregnancy with a glimmer of hope I would never pray for that. However, at that time we were given zero chance. Zero. In fact our specialist had told us that no intervention would be done because it would be unethical to intervene for a fetus knowing it would die during delivery or shortly after birth.
I say that to go back to some of the depths of despair we had been in. Yet we had been given an extra week in being sent to Houston. It is very hard to come out of the deep sadness and shine a radiant light on little hope. The last we had heard was that Ann Louise may have MMIHS. That. Sucked. You don't get up too high on the hope that "Oh, she's not going to die at birth. She will die an excruciating death 3 months later." So we found our week waiting for Houston a week of hope we never dreamed possible while simultaneously feeling the despair we had been experiencing the past several weeks.
It is a bizarre state of emotion to bing back and forth between hope and despair. When we would talk in private, Cash and I could admit this to one another. We wanted to believe so desperately that God was doing a great miracle, but the hard days we had just went through were absolutely so devastating to our emotions we did not want to get out of them and be told we had to go back there. It was easier to just stay there.
We continued to pray for Ann Louise to be healed. We also prayed for peace if she was not. What else can you pray for?
Once we got to Houston I knew we were in a whole new ballgame. The Medical Center is the 8th largest business district in the entire country. I have never seen so many doctors in my life; the whole place was like nothing I had ever seen. From the moment we got there we both felt calm and knew we were in the best hands possible. It was time to get an answer.
Our Houston specialist is downright the coolest doctor ever. From the top of his head to the tip of his toes he radiates his excitement for fetal medicine. After the tech had taken every possible measurement 2-3 times and 45 minutes later, we finally got to hear what the doctor had to say. He asked us to repeat to him every detail of what we had been through and he listened patiently with nods and "mmhmms."
After we recounted the past 2 months to him, he looked at us and said, "Quite frankly, I have no idea. Honest to God if she were a boy I would say she had had LUTO and a blocking valve was pushed through. But that is not possible in a girl. I have no idea. Let's reconvene and put our heads together in 30 minutes."
This is the moment for me when I began to get ecstatic. I had hoped we would finally have an answer, but we didn't. And oddly enough that gave me a huge sense of hope.
The doctor came back to get us and took us into a conference room where he began to write everything Ann Louise had going on onto the marker board:
Before we had known everything we knew at this point (but after we knew it was fatal), my sister asked how could she tell people to pray for us specifically. I remember telling her, "I'd want you to pray for a miscarriage." Gasp.
That sounds horrendous I'm sure. But at so many times throughout this journey the words of my OB rang loudly in my memory: there are worse things than a miscarriage. No, I would never in a normal, healthy pregnancy pray for that. Crap, in a pregnancy with a glimmer of hope I would never pray for that. However, at that time we were given zero chance. Zero. In fact our specialist had told us that no intervention would be done because it would be unethical to intervene for a fetus knowing it would die during delivery or shortly after birth.
I say that to go back to some of the depths of despair we had been in. Yet we had been given an extra week in being sent to Houston. It is very hard to come out of the deep sadness and shine a radiant light on little hope. The last we had heard was that Ann Louise may have MMIHS. That. Sucked. You don't get up too high on the hope that "Oh, she's not going to die at birth. She will die an excruciating death 3 months later." So we found our week waiting for Houston a week of hope we never dreamed possible while simultaneously feeling the despair we had been experiencing the past several weeks.
It is a bizarre state of emotion to bing back and forth between hope and despair. When we would talk in private, Cash and I could admit this to one another. We wanted to believe so desperately that God was doing a great miracle, but the hard days we had just went through were absolutely so devastating to our emotions we did not want to get out of them and be told we had to go back there. It was easier to just stay there.
We continued to pray for Ann Louise to be healed. We also prayed for peace if she was not. What else can you pray for?
Once we got to Houston I knew we were in a whole new ballgame. The Medical Center is the 8th largest business district in the entire country. I have never seen so many doctors in my life; the whole place was like nothing I had ever seen. From the moment we got there we both felt calm and knew we were in the best hands possible. It was time to get an answer.
Our Houston specialist is downright the coolest doctor ever. From the top of his head to the tip of his toes he radiates his excitement for fetal medicine. After the tech had taken every possible measurement 2-3 times and 45 minutes later, we finally got to hear what the doctor had to say. He asked us to repeat to him every detail of what we had been through and he listened patiently with nods and "mmhmms."
After we recounted the past 2 months to him, he looked at us and said, "Quite frankly, I have no idea. Honest to God if she were a boy I would say she had had LUTO and a blocking valve was pushed through. But that is not possible in a girl. I have no idea. Let's reconvene and put our heads together in 30 minutes."
This is the moment for me when I began to get ecstatic. I had hoped we would finally have an answer, but we didn't. And oddly enough that gave me a huge sense of hope.
The doctor came back to get us and took us into a conference room where he began to write everything Ann Louise had going on onto the marker board:
- englarged, irreregularly shaped bladder
- enlarged left kidney
- right ureter valve not functioning
- sunken chest
When he stepped back he said, "None of this goes together. Look at this. A right ureter valve not functioning should mean an enlarged right kidney. But it is her left kidney that is mostly enlarged. And why is her bladder shaped like this?"
As he talked we soaked in every word. It was astonishing to hear how his mind worked. He drew diagrams and thought everything through with us as if we were a part of his team. He kept saying it was the most bizarre thing, all of it. Originally he would have diagnosed LUTO too; now it looks like LUTO in a boy that blew out, but she's a girl. He mostly ruled out MMIHS due to the irregular bladder shape. Everything about how her body was handling LUTO seemed to be how a boy's body would handle it. (Okay, and being honest, I began to worry that maybe she had both parts. You see stuff like that on Lifetime! It was a real fear. But she does not exhibit a single male part, just male symptoms. It is weird.)
Ultimately he finished with the best news we had heard in the entire pregnancy: he does not think it is fatal. He did say, however, it is life changing. What the life changes will be we will have to monitor throughout the pregnancy. He also said we will have to keep running tests to close certain doors, but he wants so badly to understand what her body is doing and get us through this.
My heart jumped to my throat. I could've cried right there on his shoulder. We told him we had been expected to deliver her, dead, in 2 days. Yet now she was most likely going to live. He said he would have suggested the same fatal diagnosis to us 2 weeks before, but her body has just done something he has never seen in all of his practice. (And he is a world's leading expert in fetal medicine.)
The rest of the day included meeting with our Houston genetic counselor and undergoing an amniocentesis. On Friday we got the preliminary results that the major chromosome abnormalities such as Down's, the Trisomys, etc. were all ruled out. More detailed testing is coming, and we should hear those results in the coming weeks.
Right now we feel we are sitting at the throne of grace and fully believe God has performed a miracle in Ann Louise. We have a long way to go. At minimum she will most likely need surgery after birth. However, God has healed her to this degree; we give full assurance He will deliver her through it all.
Every moment that has passed this weekend has given me chills. It is one more moment we have Ann Louise that we never thought possible. She has just started to really kick, especially when I'm holding her brother. They are already fighting! It does not escape us the many, many friends and strangers who prayed for us. We know they have walked this journey with us and perhaps may never fully know how much we love them for being our knees and voices of prayer when all too often we could not be that for ourselves.
In twenty weeks Ann Louise will be a full-term baby. The tests and diagnoses during that time could read anything, literally. They have no clue what is happening. Yet we already have experienced a miracle from the God of the universe, the God who breathed the stars in the sky. That is the best diagnosis my sweet baby could receive. I have no idea what she will accomplish in life, but I do know it will be great. Already I am honored to be her mother. She is a fighter, a 10 ounce body with an 80 pound heart.
You know, I could probably keep using those prayers as I raise this strong-willed child. She has the perfect big brother to inspire her orneriness.
To learn more about our journey through fetal medicine and read through each phase, you can go click on a link below that will take you directly to that post:
Things Aren’t Quite Right: http://vrycroc.blogspot.com/2016/10/our-journey-through-fetal-medicine.html
There Is Power In the Name of Jesus: http://vrycroc.blogspot.com/2016/10/our-journey-through-fetal-medicine_90.html
Houston Is Just One Step Closer to You: http://vrycroc.blogspot.com/2016/10/our-journey-through-fetal-medicine_16.html
Friday, October 14, 2016
Our Journey Through Fetal Medicine: There is Power in the Name of Jesus
I knew the Bible was true. I clung to the words written in it. And I knew prayer was powerful. A song that kept coming to me was that there is power in the name of Jesus. People from near and far reached out to us and to our families to share they had been on their knees in prayer for us. You know the difference in the ol' "I'll pray for you" or "Praying!" messages you get and the real, get down on your knees face to face with God "I am praying boldly for you" messages. The latter was felt a million times over through friends, family, strangers. In my life I had never felt so loved or so close to Christ.
The genetic counselor had told us in our diagnosis appointment that we could have an ultrasound whenever we want between then and delivery. Some people choose often; some people choose never. We chose about a week before the delivery so our family could be there with us to see her alive one last time. We knew at this point she would most likely not live through delivery, so we prepared ourselves for this ultrasound as we approached the goodbye stage.
To make it easier for us the office had scheduled our appointment in Midland. I called to change that to Odessa because we loved the ultrasound tech there. And we knew if anything had changed he would notice. Overall, we were just more comfortable with the same tech. We weren't even going to see the doctor or the genetic counselor. This was just for us to begin saying goodbye.
When the tech started the ultrasound, I knew surely my mind was playing tricks on me. I did not say a word as I stared in disbelief. Did her bladder look smaller or was that just me?
At that time he said, "I'm not sure, but I think the bladder is smaller." I held my breath. Oh, God, please. Please.
We let our parents come in for what seemed like 10 seconds, and they were escorted back out. I'm sure they were wondering why they had come all that way to not really see anything. But the tech started looking for the older ultrasounds and comparing the measurements. He was so excited when he found them, "Yes! Last time the bladder was over 5 centimeters. Today it is less than 3. I am going to get the doctor."
Cash and I grabbed hands. Was this happening? Of all the times we had expected a miracle, it had never happened. But now when we came to say goodbye, was a miracle in our midst? A different doctor came in and said he was going to take a look as our doctor was in Midland that day. He said yes the bladder was smaller but most importantly the amniotic fluid levels were normal. Normal. They were supposed to be almost all gone by now. He went out to call our doctor.
He came back in with the genetic counselor and said our doctor had told him, "That is miraculous." My heart leapt.
They quickly scheduled us for 8:40 the next morning to see our specialist. We were ecstatic but trying to control our emotions. What if he saw something totally different? It didn't matter in that moment in time. I told Cash tomorrow can worry about itself, tonight we are praising God.
The next day we saw our specialist who explained to us some of the very real obstacles we had yet to overcome. He said looking at that moment he would guess megacystic microcolon (MMIHS). But he was not sure as he was not in this daily anymore, so he wanted us to go to Houston to the Children's Memorial Hermann Fetal Center. He felt confident that the guys there live in this more than he does and they could steer us in the best direction.
I googled MMIHS. And suddenly the excitement of continuing the pregnancy faded. The average lifespan is 3 1/2 months. Children who survive have multiple organ transplants and life for them..and their families...is hard. Hospitals. Surgeries. Feeding tubes. The list goes on.
The feeling of anger crept back up. "Oh, God, yesterday we began to feel a miracle. Today we hurt so deeply. Please, Lord, spare us from an even grimmer outlook." We felt back at square one, back to facing decisions that no parent ever wants to make. I could not believe this. In a very real sense I was angry that we had had peace and were learning to deal with loss then were tossed an ounce of a miracle all to have it slammed back down our throat.
In the week we waited for Houston I compared us to the Israelites in the desert. It seemed so much easier to crawl back into the bondage of slavery, the bondage of death, because at least then we knew what we were getting. That probably sounds crazy. But that is as real as I can get. I had accepted death; now I had to wait on the promised land. Or was it even going to be a promised land? Would it just be a new bondage of slavery?
The genetic counselor had told us in our diagnosis appointment that we could have an ultrasound whenever we want between then and delivery. Some people choose often; some people choose never. We chose about a week before the delivery so our family could be there with us to see her alive one last time. We knew at this point she would most likely not live through delivery, so we prepared ourselves for this ultrasound as we approached the goodbye stage.
To make it easier for us the office had scheduled our appointment in Midland. I called to change that to Odessa because we loved the ultrasound tech there. And we knew if anything had changed he would notice. Overall, we were just more comfortable with the same tech. We weren't even going to see the doctor or the genetic counselor. This was just for us to begin saying goodbye.
When the tech started the ultrasound, I knew surely my mind was playing tricks on me. I did not say a word as I stared in disbelief. Did her bladder look smaller or was that just me?
At that time he said, "I'm not sure, but I think the bladder is smaller." I held my breath. Oh, God, please. Please.
We let our parents come in for what seemed like 10 seconds, and they were escorted back out. I'm sure they were wondering why they had come all that way to not really see anything. But the tech started looking for the older ultrasounds and comparing the measurements. He was so excited when he found them, "Yes! Last time the bladder was over 5 centimeters. Today it is less than 3. I am going to get the doctor."
Cash and I grabbed hands. Was this happening? Of all the times we had expected a miracle, it had never happened. But now when we came to say goodbye, was a miracle in our midst? A different doctor came in and said he was going to take a look as our doctor was in Midland that day. He said yes the bladder was smaller but most importantly the amniotic fluid levels were normal. Normal. They were supposed to be almost all gone by now. He went out to call our doctor.
He came back in with the genetic counselor and said our doctor had told him, "That is miraculous." My heart leapt.
They quickly scheduled us for 8:40 the next morning to see our specialist. We were ecstatic but trying to control our emotions. What if he saw something totally different? It didn't matter in that moment in time. I told Cash tomorrow can worry about itself, tonight we are praising God.
The next day we saw our specialist who explained to us some of the very real obstacles we had yet to overcome. He said looking at that moment he would guess megacystic microcolon (MMIHS). But he was not sure as he was not in this daily anymore, so he wanted us to go to Houston to the Children's Memorial Hermann Fetal Center. He felt confident that the guys there live in this more than he does and they could steer us in the best direction.
I googled MMIHS. And suddenly the excitement of continuing the pregnancy faded. The average lifespan is 3 1/2 months. Children who survive have multiple organ transplants and life for them..and their families...is hard. Hospitals. Surgeries. Feeding tubes. The list goes on.
The feeling of anger crept back up. "Oh, God, yesterday we began to feel a miracle. Today we hurt so deeply. Please, Lord, spare us from an even grimmer outlook." We felt back at square one, back to facing decisions that no parent ever wants to make. I could not believe this. In a very real sense I was angry that we had had peace and were learning to deal with loss then were tossed an ounce of a miracle all to have it slammed back down our throat.
In the week we waited for Houston I compared us to the Israelites in the desert. It seemed so much easier to crawl back into the bondage of slavery, the bondage of death, because at least then we knew what we were getting. That probably sounds crazy. But that is as real as I can get. I had accepted death; now I had to wait on the promised land. Or was it even going to be a promised land? Would it just be a new bondage of slavery?
To learn more about our journey through fetal medicine and read through each phase, you can go click on a link below that will take you directly to that post:
Things Aren’t Quite Right: http://vrycroc.blogspot.com/2016/10/our-journey-through-fetal-medicine.html
There Is Power In the Name of Jesus: http://vrycroc.blogspot.com/2016/10/our-journey-through-fetal-medicine_90.html
Houston Is Just One Step Closer to You: http://vrycroc.blogspot.com/2016/10/our-journey-through-fetal-medicine_16.html
Our Journey Through Fetal Medicine: Living in Peace
At times I could sit and plan for a beautiful funeral and anticipate the arrival of friends and family. At times, of course, I was very weak. If I'm honest, I questioned God a lot. I had the obvious questions of why Ann Louise. But I also had a very deep, burning question: God, why did you give such peace to us and have so many praying for us if our answer was death? God, why did you say "no" to our miracle?
I began to reflect back on the many stages we had been through, and I knew God was telling me that up to that point no miracle had been available.
I began to reflect back on the many stages we had been through, and I knew God was telling me that up to that point no miracle had been available.
- If it had been a fluke on that second ultrasound, well, we would have called it a fluke.
- If she had been a boy, we would have been ever grateful for the doctors putting a shunt in the bladder.
- If, if, if...then we and the doctors and the world would have taken it for every other outcome other than a miracle.
If God were to get the glory, a miracle had to be present when all other options were cast aside. But, I knew in a very real way, that God's answer to a miracle was still perhaps "no." So my prayers became, "Lord, I beg of you for this miracle to heal Ann Louise. And, Lord, if you say no, please see me through with the peace that surpasses all understanding. I cannot endure this without You."
I received peace. Cash had that as well. We were very thankful that God was allowing us to get out of bed and take one day at a time. That is all we knew. We hurt and were much in the mourning stage, but despite our despair we knew God was seeing us through.
We clung to each other. A dear, elderly friend of mine stopped me at church. When he spoke his gentle words, he explained nothing can stop this pain right now but if Cash and I lean on each other then we can look back one day and see this was a very sweet time in our marriage. I knew he was right. My husband and I have always had a wonderful marriage, but we had never drawn as close as we were during this time. As the old saying goes, it either makes you or breaks you.
Throughout the coming days we searched for ways to just be together. Cash booked us a weekend getaway in Beaver Creek, Colorado for a few weeks after the funeral. We highly anticipated getting away from the sadness and the stage of grief we were stuck in.
We also enjoyed a special date night one Saturday when his mom watched Henry. We went bowling and seriously had more fun bowling 2 games and eating really unhealthy food than perhaps we had ever had. Then we met up with our friends Connor and Meredith for a treat at the local hibachi grill. Afterwards we all went out for ice cream and talked until we knew had to get back home to the kiddos. It was the most refreshing night we had had since Henry was born! Just being with Cash and one of my dearest friends gave me the reassurance that I could one day be joyful again.
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| enjoying a night away |
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We had another date night shortly thereafter. My mom was in town the evening of Cash's CEO's birthday party (which is always a huge event), so we got to dust off our boots and enjoy the Bellamy Brothers with our work friends. Sometimes being alone is a great way to grieve, but many times being with friends is a great way to heal.
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The days kept slipping faster and faster. When I was pregnant with Henry, the days drug on. I felt like I was pregnant for 8 years. But with Ann Louise each day was a gift. I was beginning to feel her move. Every time she moved I smiled before the remembrance of the fading time came back. As one grieving mother wrote, it is very surreal to feel your baby kick inside of you while you know that soon you will be visiting those bones at a grave. I tried to shake these thoughts, but this summed up my existence at the time. Every day that passed was one more day closer to the worst day of my life.
We had decided she would be cremated and had ordered a beautiful moon shaped urn for her precious ashes. Nothing had stood out to us as to where to keep the urn, but then Cash suggested we upgrade the gardens in the backyard and he could build a pedestal for a bird bath. We could keep the urn inside of this pedestal. I loved it. He is such a wonderful husband, but he is an even more incredible and doting dad. He started working that weekend to clear out some of the shrubs in the backyard.
A priest (in a very weird way with a very weird story) gave me Psalms 23:4--
"Even though I walk THROUGH the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me."
Another close friend, who had been in a similar grief the year before, told me how true this was. You have to walk THROUGH this. Do not skirt around it. Do not avoid it. Walk through it. That is harder now, but you are much better off in the long run.
I took this verse and this advice to heart. I still prayed, Oh God, for Him to deliver her. But at the same time Cash and I began to walk straight through that valley of the shadow of death. It is a very deep, dark pain. God is the only light pulling you out, and we clung to Him like we never knew how to before.
Day after day verses would pop into my head. I thought about my upbringing and how even more thankful I was now for being raised in a church that taught memorizing scripture. I guess in most of my life scripture memorization was more something to be proud of. That's how it was for me (not how I was taught--just selfish me), if I'm honest. I said memorized scripture in very opportune times to impress folks. But in these dark and difficult days I learned how important it is to know the scripture by heart; I wish I knew more. I held dearly the verses that friends would give to me and those that would come into my head. And I was ever thankful for parents who had me in church when the doors were open, for an Awanas program that taught scripture, and for Bible teachers and mentors all those years who repeated scripture daily.
To learn more about our journey through fetal medicine and read through each phase, you can go click on a link below that will take you directly to that post:
Things Aren’t Quite Right: http://vrycroc.blogspot.com/2016/10/our-journey-through-fetal-medicine.html
There Is Power In the Name of Jesus: http://vrycroc.blogspot.com/2016/10/our-journey-through-fetal-medicine_90.html
Houston Is Just One Step Closer to You: http://vrycroc.blogspot.com/2016/10/our-journey-through-fetal-medicine_16.html
Our Journey Through Fetal Medicine: An Infant Funeral
On the ultrasound the next day the doctor confirmed the blood tests: we were having a girl. I think it was that moment that it hit me. As the tech typed out "girl" on the screen and printed it for our file, I laid in a state of shock on the bed. My husband reached over and hugged me as I sat stone cold.
The doctor and his staff gave us a moment by ourselves. It was September 16. I had only known I was pregnant for 2 months. In that time I had gone from being sad about having a second baby to fearful for the second baby to mourning the loss of the second baby. The world had stopped but my mind kept racing.
The genetic counselor and doctor met with us after this. We did not say much except our wishes were to deliver her. I could barely handle the thought of someone stopping my baby's heartbeat, and I told them this. They assured us most parents do not go to the lengths of going to specialists in hopes they lose a child and that our wish was not only normal but would be taken very seriously. I also learned how very dependent I would be on the genetic counselor--we loved her so dearly.
We were given a few books that would help us in the coming weeks. My favorite one was titled When Hello Means Goodbye. Reading it that weekend began to give me peace. I read how I could honor her life and show her how much we loved her.
We decided to deliver her at 20 weeks. For us this was the best decision. When we weighed what her death would be like at 20 weeks versus 40 weeks, how Henry's life would be affected, our length of time to mourn, our future pregnancy plans, living through every stranger telling us congratulations as my belly grew--all of it made more sense at 20 weeks. Mostly we wanted to honor her, love her. Going full term with her would mean a chance of pain for her with an enlarged bladder (doctors cannot confirm fetal pain, but we felt it would be painful), a possible ruptured bladder at some point, dying of suffocation due to no lung development, and the development of Potter's Sequence due to lack of amniotic fluid. For us we did not feel that honored her.
My life changed a lot during this time. I had always been a huge proponent of pro-life. Obviously. I wanted my child. Of course I'm pro-life. When objections would be made for "medical abortions", I agreed sure that sounded nice but honestly never really thought anything like that was necessary. But when it's your baby and you have to make the decision all of those things become very real.
After meeting back up with the OB to discuss delivery plans, he kept using words such as "abortion" and "termination of the pregnancy." I said I would never abort my child. He said that that is exactly what we were doing, even if it was for medical purposes. And for good measure he explained we could not go to 20 weeks in Texas, because that was the limit on late-term abortion. We had to deliver at 19 weeks and a few days.
I cried a lot over this and contemplated going full term just so no one could say I aborted my child. But my husband brought me back and said we are here to love our little Ann Louise (a name given to her after her grandmother and great-grandmother), not the world. Who cares if some lawmaker calls it an abortion? We are making this choice because it is how we can best show our love.
He was right. It is just hard to conceive the thought. When you think you believe so strongly on a moral and ethical stance and that is changing to some degree, it is hard to wrap your thoughts around it. At the end of the day I knew I loved my daughter more than any lawmaker and his policies. Call it what you want--I wanted the best, most peaceful way for my baby girl to come into and out of this world. And my second major lesson I learned through this process was that as a parent you have to make the best choices you can make and not judge others when they make a different one.
To endure the pain I ironically found peace in funeral planning. We attend an Anglican church, and our priest created one of the most beautiful Eucharistic services I have ever read. We spent many hours pouring over songs and prayers and readings. I kept telling Cash, "This is the only thing I ever get to plan for my daughter. I want it to be perfect."
I'm not sure things got easier, but it did become more normal. I'm sure I spooked a few friends and strangers as I would so openly talk about Ann Louise's funeral. We reserved the beautiful chapel on the campus of our local college for October 22. I wanted desperately a black pillbox hat and veil to wear, and a lady in Japan custom made one for me. We scheduled hotels and meals for our family and friends who would be coming into town. And we met with a local funeral home who was to cremate her body.
People, even strangers, were so kind to reach out to us during this time. The genetic counselor had had the tech record Ann Louise's heartbeat and a group was going to sew this into a bear with the baby's name on it. Another group, the Now I Lay Me Down to Sleep Foundation, scheduled a free photo session in the hospital after she was born so we could always remember her precious face, hands, feet. The funeral home would come get her from the hospital, give us another chance to view her at the funeral home, and would cremate her for free. They also said a local flower shop would do our family flowers for free. The director of the chapel found out why we were reserving it, and she said she could not charge us because no parent should feel this pain.
Cards poured in. Friends sent flowers. We received texts and phone calls. My granny made black bows for the chapel. My friend Meredith dropped off a basket of fall goodies and a printout about not being scared of this year's election: she knows my heart. We knew we were so lifted in prayer and that the peace of God was the only thing getting us through. It is times like these you cling to your faith and your friends--because without either this life would not be durable.
I wrote my feelings down a couple times throughout these weeks. On September 19 I wrote,
"No birthday parties. No graduations. Or wedding. Or Miss America watch parties. Or shopping trips to Dallas. All she gets is a funeral. For eternity all I ever get to plan for my baby is a funeral. I want it to be perfect.
Her whole life. I will hold her for her whole life. And then I'm supposed to give her to the angels. Surely they will do better than me, but I wish I had the chance to prove that wrong."
Nothing in life prepares you when saying goodbye to a baby you are still carrying. As the genetic counselor told me, we were living every parent's worst nightmare. I finally got what my OB had said all those weeks ago that some things are worse than a miscarriage. Yes, indeed. Having to choose when your baby dies and knowing she will never live, that's as pretty low of a feeling as one can get in life.
The moments that hit me the hardest were when I would think about giving her lifeless body to the nurses and letting her go. I could not bear it. One night Cash was out dove hunting with his dad and Henry was asleep, so I was alone and listening to possible funeral songs. I began to weep uncontrollably. This was my every emotion coming to the surface. I could hardly breathe wondering how I would ever hand her back. How does a mother do that and survive?
The doctor and his staff gave us a moment by ourselves. It was September 16. I had only known I was pregnant for 2 months. In that time I had gone from being sad about having a second baby to fearful for the second baby to mourning the loss of the second baby. The world had stopped but my mind kept racing.
The genetic counselor and doctor met with us after this. We did not say much except our wishes were to deliver her. I could barely handle the thought of someone stopping my baby's heartbeat, and I told them this. They assured us most parents do not go to the lengths of going to specialists in hopes they lose a child and that our wish was not only normal but would be taken very seriously. I also learned how very dependent I would be on the genetic counselor--we loved her so dearly.
We were given a few books that would help us in the coming weeks. My favorite one was titled When Hello Means Goodbye. Reading it that weekend began to give me peace. I read how I could honor her life and show her how much we loved her.
We decided to deliver her at 20 weeks. For us this was the best decision. When we weighed what her death would be like at 20 weeks versus 40 weeks, how Henry's life would be affected, our length of time to mourn, our future pregnancy plans, living through every stranger telling us congratulations as my belly grew--all of it made more sense at 20 weeks. Mostly we wanted to honor her, love her. Going full term with her would mean a chance of pain for her with an enlarged bladder (doctors cannot confirm fetal pain, but we felt it would be painful), a possible ruptured bladder at some point, dying of suffocation due to no lung development, and the development of Potter's Sequence due to lack of amniotic fluid. For us we did not feel that honored her.
My life changed a lot during this time. I had always been a huge proponent of pro-life. Obviously. I wanted my child. Of course I'm pro-life. When objections would be made for "medical abortions", I agreed sure that sounded nice but honestly never really thought anything like that was necessary. But when it's your baby and you have to make the decision all of those things become very real.
After meeting back up with the OB to discuss delivery plans, he kept using words such as "abortion" and "termination of the pregnancy." I said I would never abort my child. He said that that is exactly what we were doing, even if it was for medical purposes. And for good measure he explained we could not go to 20 weeks in Texas, because that was the limit on late-term abortion. We had to deliver at 19 weeks and a few days.
I cried a lot over this and contemplated going full term just so no one could say I aborted my child. But my husband brought me back and said we are here to love our little Ann Louise (a name given to her after her grandmother and great-grandmother), not the world. Who cares if some lawmaker calls it an abortion? We are making this choice because it is how we can best show our love.
He was right. It is just hard to conceive the thought. When you think you believe so strongly on a moral and ethical stance and that is changing to some degree, it is hard to wrap your thoughts around it. At the end of the day I knew I loved my daughter more than any lawmaker and his policies. Call it what you want--I wanted the best, most peaceful way for my baby girl to come into and out of this world. And my second major lesson I learned through this process was that as a parent you have to make the best choices you can make and not judge others when they make a different one.
To endure the pain I ironically found peace in funeral planning. We attend an Anglican church, and our priest created one of the most beautiful Eucharistic services I have ever read. We spent many hours pouring over songs and prayers and readings. I kept telling Cash, "This is the only thing I ever get to plan for my daughter. I want it to be perfect."
I'm not sure things got easier, but it did become more normal. I'm sure I spooked a few friends and strangers as I would so openly talk about Ann Louise's funeral. We reserved the beautiful chapel on the campus of our local college for October 22. I wanted desperately a black pillbox hat and veil to wear, and a lady in Japan custom made one for me. We scheduled hotels and meals for our family and friends who would be coming into town. And we met with a local funeral home who was to cremate her body.
People, even strangers, were so kind to reach out to us during this time. The genetic counselor had had the tech record Ann Louise's heartbeat and a group was going to sew this into a bear with the baby's name on it. Another group, the Now I Lay Me Down to Sleep Foundation, scheduled a free photo session in the hospital after she was born so we could always remember her precious face, hands, feet. The funeral home would come get her from the hospital, give us another chance to view her at the funeral home, and would cremate her for free. They also said a local flower shop would do our family flowers for free. The director of the chapel found out why we were reserving it, and she said she could not charge us because no parent should feel this pain.
Cards poured in. Friends sent flowers. We received texts and phone calls. My granny made black bows for the chapel. My friend Meredith dropped off a basket of fall goodies and a printout about not being scared of this year's election: she knows my heart. We knew we were so lifted in prayer and that the peace of God was the only thing getting us through. It is times like these you cling to your faith and your friends--because without either this life would not be durable.
I wrote my feelings down a couple times throughout these weeks. On September 19 I wrote,
"No birthday parties. No graduations. Or wedding. Or Miss America watch parties. Or shopping trips to Dallas. All she gets is a funeral. For eternity all I ever get to plan for my baby is a funeral. I want it to be perfect.
Her whole life. I will hold her for her whole life. And then I'm supposed to give her to the angels. Surely they will do better than me, but I wish I had the chance to prove that wrong."
Nothing in life prepares you when saying goodbye to a baby you are still carrying. As the genetic counselor told me, we were living every parent's worst nightmare. I finally got what my OB had said all those weeks ago that some things are worse than a miscarriage. Yes, indeed. Having to choose when your baby dies and knowing she will never live, that's as pretty low of a feeling as one can get in life.
The moments that hit me the hardest were when I would think about giving her lifeless body to the nurses and letting her go. I could not bear it. One night Cash was out dove hunting with his dad and Henry was asleep, so I was alone and listening to possible funeral songs. I began to weep uncontrollably. This was my every emotion coming to the surface. I could hardly breathe wondering how I would ever hand her back. How does a mother do that and survive?
To learn more about our journey through fetal medicine and read through each phase, you can go click on a link below that will take you directly to that post:
Things Aren’t Quite Right: http://vrycroc.blogspot.com/2016/10/our-journey-through-fetal-medicine.html
There Is Power In the Name of Jesus: http://vrycroc.blogspot.com/2016/10/our-journey-through-fetal-medicine_90.html
Houston Is Just One Step Closer to You: http://vrycroc.blogspot.com/2016/10/our-journey-through-fetal-medicine_16.html
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