Since our first procedure, I had been delegated to "couch potato" status. While it sounds good on those days when life is busy, it can be maddening when forced to do it day after day. I wanted to be up playing with Emily, cleaning my house, doing laundry...something. However, it kept me home-bound for a couple of weeks, and for that I was secretly thankful.
I talked to a wonderful mom at church on Sunday who lost her first baby very late in her pregnancy, and she said exactly what I was feeling: Losing a baby changes you forever. She shared with me her hurt over losing their first baby girl, but also shared the blessings they received from their painful experience.
She couldn't have put it more perfectly. I am different now than I was a mere three weeks ago, and I admit the thought of facing the world after this was frightening. I was so thankful to have my friends come over to the house and visit, to laugh and cry with me. But I was terrified of being around large groups of people and knowing how to handle myself.
When I received the news last Wednesday that I didn't have to be sedentary all of the time, I was excited, but also a little scared. Chad, of course, had been working and had plenty of time out of the house...he thought it would be good for me to get out now too.
I had an appointment with my primary OB last Thursday. I had an ultrasound at his office since he had not seen one since the ultrasound showing the girls had TTTS. He was so excited to see the amount of fluid that our little girl had accumulated, that her blood flow was great, and that she was very active. Her growth even went from being 10 days behind to 7 days behind. I was even more encouraged than before, even excited. How I desperately want this little one to be okay.
After my appointment, I drove down to the Med Center to drop something off for Chad. I decided to go inside and wait for him in the lobby rather than my car. He was glad to see me, and asked if I could stick around for a little while and visit some of his fellow residents and staff. We talked to several of the wonderful people with whom he works, and they were so encouraging, letting us know they had been thinking and praying for us. Chad showed the new ultrasound pictures to everyone we saw...he's such a proud daddy. God showed me that it was going to be okay, that I could go out in public and not fall apart, and that people were wanting to show their support.
That night I went to help prepare for our MOPS meeting at church the next morning, and it felt good to get back into something I really enjoy. The ladies at MOPS continue to show me so much love and support, and it was great to be with them and laugh and have a good time. Sunday came and I went to church for the first time since we lost Allie. We are so thankful for our church community...we were so touched by the many people who came up to us and shared that they had been praying for us.
I also want to thank the many wonderful people who have shared their own experiences of losing a baby with us. It breaks our hearts to know that so many of you have had this heartache in your lives, but you are such an example to us as you persevere through life with faith and joy.
I guess that is where I am now...contemplating the road ahead with this other precious baby girl. Every time she kicks I am elated, feeling reassured. But I think about the day she arrives. I want more than anything to be joyful, but will I feel sorrow having planned on having Allie with me too? Will I always look at this little one and think of her missing half? This little one will always be a twin...I will always be the mother of twins. Will I be able to rejoice in who she is and all of her milestones without feeling loss? I hope so. I will always hurt over losing Allie, but my prayer is that God will give me the ability to rejoice over this other precious girl for who she is as an individual too. She already brings me so much joy, and I pray each day that God would keep her safe and healthy...I desperately want to meet her.
Tomorrow is another trip to the hospital to check the condition of my cervix. We are praying it continues to hold its length so our baby has plenty of time to grow and get stronger.
Thank you for your continued prayers and acts of love.
Love, Jessica
Tuesday, February 24, 2009
Tuesday, February 17, 2009
Feeling Encouraged
We had a follow-up appointment today with Dr. Barsoom to see if my cervix is still behaving after the circlage last week. We were thankful to find out that it is still at least 3 1/2 cm, which is a normal cervix length. I will go back again next week to have it checked again, and I expect I will have weekly appointments at Bergan for quite a while. While I don't have to be as inactive as I have been since last week (Yay!), I do have to "take it easy" for the next five weeks. By then I will be 28 weeks, and the problems a premature baby would encounter are greatly reduced at that point. Of course our hope is that I would be able to carry this little girl until at least 36 weeks. The longer I carry her, the better.
I have an appointment with my primary OB, Dr. Ryder, this Thursday. I'm accepting the fact that I will be seeing my doctors constantly for the duration of this pregnancy, and I am appreciative that they want to keep a close eye on me. I feel confident in their care.
While we are excited about this news, we are still working through the loss of our Allie. A great encouragement to me was a book we received from our friends Mary and Steve, who are on our worship team at church. It is called, "I'll Hold You in Heaven." It's written by a pastor for parents who have suffered a loss of a baby during pregnancy or soon after delivery, and answers some questions about Allie's little life.
The main points are that God has designed every child to have a purpose, whether their little life goes beyond the womb or not. Allie's little life accomplished something in her brief 21 weeks...we trust that is true, as we have already felt her impact on our lives. And even though relationships don't exist the same way in heaven as they do here, heaven is a place where we are known. Allie will know us, and we will know her. I wish more than anything that we could have known her in this lifetime, but I am thankful that there is hope, and I will hold her someday.
In the meantime, we await the much hoped-for arrival of her sister. We continue to be so thankful for your prayers and acts of kindness. God continues to overwhelm us with His goodness through all of you.
With much love, Jessica
I have an appointment with my primary OB, Dr. Ryder, this Thursday. I'm accepting the fact that I will be seeing my doctors constantly for the duration of this pregnancy, and I am appreciative that they want to keep a close eye on me. I feel confident in their care.
While we are excited about this news, we are still working through the loss of our Allie. A great encouragement to me was a book we received from our friends Mary and Steve, who are on our worship team at church. It is called, "I'll Hold You in Heaven." It's written by a pastor for parents who have suffered a loss of a baby during pregnancy or soon after delivery, and answers some questions about Allie's little life.
The main points are that God has designed every child to have a purpose, whether their little life goes beyond the womb or not. Allie's little life accomplished something in her brief 21 weeks...we trust that is true, as we have already felt her impact on our lives. And even though relationships don't exist the same way in heaven as they do here, heaven is a place where we are known. Allie will know us, and we will know her. I wish more than anything that we could have known her in this lifetime, but I am thankful that there is hope, and I will hold her someday.
In the meantime, we await the much hoped-for arrival of her sister. We continue to be so thankful for your prayers and acts of kindness. God continues to overwhelm us with His goodness through all of you.
With much love, Jessica
Friday, February 13, 2009
Since Tuesday...
When we left the doctor's office on Tuesday, Dr. Fleming said, "If you feel your ears burning tomorrow, it's me talking to Dr. Ryder and Dr. Barsoom about you." Sure enough, Dr. Ryder (my primary OB) called at 10:30 AM and told me to get my things together and head back to the hospital. Apparently they were all concerned about the shortening of my cervix and decided we shouldn't wait to have something done to repair it. Fortunately, my mom happened to be at my house doing laundry and helping with Emily, so I got a bag together and she drove me to the hospital.
It was decided that Dr. Barsoom would do a circlage, and I am 99% sure I just spelled that incorrectly. It is a procedure where they stitch the cervix closed, hoping to prevent preterm labor. I was admitted to the hospital, and began my wait to have the procedure. I have to admit it was a difficult afternoon. When they put the monitor on me to track baby's heartbeat, she was moving around so much they couldn't hold the beat very long. I was so thankful that she seemed to be doing well, but was scared about the potential of going into labor long before she was ready.
Chad was supposed to be on call overnight at the hospital, but thankfully his co-worker, Eric, was kind enough to switch call nights with him so that Chad could be with me at the hospital. A little after 4 PM, they did the procedure. The procedure itself only took about a half an hour, and then I spent about an hour in recovery. I was awake during the procedure, but had a spinal block to keep me from feeling anything. Dr. Barsoom said he was glad we didn't wait until next week to re-evaluate, as I was starting to dilate by the time of the procedure.
Because the procedure can cause the uterus to start reacting, they kept me in the hospital overnight to monitor any contractions. I had several contractions at first, so I received two injections of some kind of medicine to calm my uterus. I also took some other kind of oral meds to help with contractions too. Thankfully, the contractions subsided and I didn't have any more contractions after midnight.
After I returned to my room, the fear kind of set it for both Chad and me. The fact that I was starting to dilate was scary, and we were dealing with the fear of losing this baby too.
Fortunately, Chad's parents and then our friends Erin, Stacy, and Maggie came up to the hospital to visit, so we were distracted from our fears for a while. The girls also brought me Runza french fries, which tasted even better than usual since I hadn't been allowed to eat since Dr. Ryder called that morning. It was a blessing to talk and laugh with each other. I was so glad to have them there.
I had an ultrasound the next morning to see how my cervix was doing, but Dr. Fleming didn't come in to the hospital until the afternoon to evaluate the results. I sat around all morning waiting and praying that the procedure worked. Chad got off work around 2 and was to the hospital by the time Dr. Fleming came in. When he finally entered the room, Dr. Fleming's first words were, "Well, do you want to go home?" Of course I said yes...I was missing Emily like crazy, and I thought I might go nuts sitting in a hospital bed anymore. Then he delivered the great news that the circlage had worked well, and the pressure of the stitches actually helped lengthen my cervix back to 4 cm! We were so excited to hear the news, and so thankful that there wasn't a "but..." following it. I still have to be a "couch potato" until my follow-up appointment next week, but my hope is that next Tuesday will show that I can maybe be a little more active.
Thank you so much for your continuing prayers for our baby girl. You continue to be such an encouragement to us. While I was in the hospital, a nursing student asked if she could do a patient survey with me. One of her questions was, "Who is your support system during this time?" I was able to name my wonderful husband who has run back and forth from a busy work schedule to be with me, and who has been so strong, making all of the hard phone calls and doing all of the communicating with my doctors. I was also able to name our wonderful parents and families, our incredible friends and church community, and so many other people, some I have not had the opportunity to even meet but who have offered their prayers and encouragement. My heart breaks for those who go through a difficult time without the kind of support we have received, because you have really been God's greatest way of sustaining us during this time.
We love you all so much, and we are praying for each of you as well. We know that many of you are going through your own difficult times right now too, and we count it a privilege to be praying for you.
Thanks again for reading.
Love, Jessica
It was decided that Dr. Barsoom would do a circlage, and I am 99% sure I just spelled that incorrectly. It is a procedure where they stitch the cervix closed, hoping to prevent preterm labor. I was admitted to the hospital, and began my wait to have the procedure. I have to admit it was a difficult afternoon. When they put the monitor on me to track baby's heartbeat, she was moving around so much they couldn't hold the beat very long. I was so thankful that she seemed to be doing well, but was scared about the potential of going into labor long before she was ready.
Chad was supposed to be on call overnight at the hospital, but thankfully his co-worker, Eric, was kind enough to switch call nights with him so that Chad could be with me at the hospital. A little after 4 PM, they did the procedure. The procedure itself only took about a half an hour, and then I spent about an hour in recovery. I was awake during the procedure, but had a spinal block to keep me from feeling anything. Dr. Barsoom said he was glad we didn't wait until next week to re-evaluate, as I was starting to dilate by the time of the procedure.
Because the procedure can cause the uterus to start reacting, they kept me in the hospital overnight to monitor any contractions. I had several contractions at first, so I received two injections of some kind of medicine to calm my uterus. I also took some other kind of oral meds to help with contractions too. Thankfully, the contractions subsided and I didn't have any more contractions after midnight.
After I returned to my room, the fear kind of set it for both Chad and me. The fact that I was starting to dilate was scary, and we were dealing with the fear of losing this baby too.
Fortunately, Chad's parents and then our friends Erin, Stacy, and Maggie came up to the hospital to visit, so we were distracted from our fears for a while. The girls also brought me Runza french fries, which tasted even better than usual since I hadn't been allowed to eat since Dr. Ryder called that morning. It was a blessing to talk and laugh with each other. I was so glad to have them there.
I had an ultrasound the next morning to see how my cervix was doing, but Dr. Fleming didn't come in to the hospital until the afternoon to evaluate the results. I sat around all morning waiting and praying that the procedure worked. Chad got off work around 2 and was to the hospital by the time Dr. Fleming came in. When he finally entered the room, Dr. Fleming's first words were, "Well, do you want to go home?" Of course I said yes...I was missing Emily like crazy, and I thought I might go nuts sitting in a hospital bed anymore. Then he delivered the great news that the circlage had worked well, and the pressure of the stitches actually helped lengthen my cervix back to 4 cm! We were so excited to hear the news, and so thankful that there wasn't a "but..." following it. I still have to be a "couch potato" until my follow-up appointment next week, but my hope is that next Tuesday will show that I can maybe be a little more active.
Thank you so much for your continuing prayers for our baby girl. You continue to be such an encouragement to us. While I was in the hospital, a nursing student asked if she could do a patient survey with me. One of her questions was, "Who is your support system during this time?" I was able to name my wonderful husband who has run back and forth from a busy work schedule to be with me, and who has been so strong, making all of the hard phone calls and doing all of the communicating with my doctors. I was also able to name our wonderful parents and families, our incredible friends and church community, and so many other people, some I have not had the opportunity to even meet but who have offered their prayers and encouragement. My heart breaks for those who go through a difficult time without the kind of support we have received, because you have really been God's greatest way of sustaining us during this time.
We love you all so much, and we are praying for each of you as well. We know that many of you are going through your own difficult times right now too, and we count it a privilege to be praying for you.
Thanks again for reading.
Love, Jessica
Tuesday, February 10, 2009
Some good news
We are so blessed to tell you that our little girl was looking good today at the ultrasound! Thank you so much for all of your prayers...God answered the cry of our hearts!
I will tell you that today started as a tough day. I was very anxious about the appointment and what we might find. I prayed all throughout the day, pleading with God to please protect this baby girl. I was so blessed when I was sitting at the table reading this afternoon and I felt her kick me. She did it several times, and I was so excited and happy to know she was okay. I haven't felt any movement since the one time before we went up to Mayo, so I was so blessed to feel those little kicks. Then while we were in the waiting area at the hospital before the appointment, she started kicking again and Chad was able to feel. It was the best feeling he'd had in a while too.
We have two prayers now: baby girl is looking good structurally...Dr. Fleming said all of her parts are looking great, and he was very excited to see she was very active and had more fluid in which to move around. She is measuring about 10 days behind my actual gestational age, so the longer I can carry her and give her time to "catch up," the better.
Which leads to our second prayer: the ultrasound at Mayo revealed that my cervix had shortened considerably, and it appears to have shortened a little more. The hope was (and still is) that with the removal of the extra fluid after the ablation that my cervix would recover on its own. Dr. Fleming wants to see me next Tuesday to check it again. If it worsens, we will have to discuss possibly doing something to try and repair it. While I have not been put on official bed rest status, Dr. Fleming did tell me that I need to be a "couch potato." We are so excited that our little girl seems to be doing well, so the last thing we want now would be to go into preterm labor.
So the best thing would be to go back next week, see our baby girl still growing, and see that my cervix had recovered.
Again, thank you so much for your thoughts and prayers for our little girl. While we are still grieving the loss of Allie, today brought us much joy. We are so hopeful that I will be able to carry this little girl for many more weeks, and she would be a healthy little girl.
Thank you again! Love, Jessica
I will tell you that today started as a tough day. I was very anxious about the appointment and what we might find. I prayed all throughout the day, pleading with God to please protect this baby girl. I was so blessed when I was sitting at the table reading this afternoon and I felt her kick me. She did it several times, and I was so excited and happy to know she was okay. I haven't felt any movement since the one time before we went up to Mayo, so I was so blessed to feel those little kicks. Then while we were in the waiting area at the hospital before the appointment, she started kicking again and Chad was able to feel. It was the best feeling he'd had in a while too.
We have two prayers now: baby girl is looking good structurally...Dr. Fleming said all of her parts are looking great, and he was very excited to see she was very active and had more fluid in which to move around. She is measuring about 10 days behind my actual gestational age, so the longer I can carry her and give her time to "catch up," the better.
Which leads to our second prayer: the ultrasound at Mayo revealed that my cervix had shortened considerably, and it appears to have shortened a little more. The hope was (and still is) that with the removal of the extra fluid after the ablation that my cervix would recover on its own. Dr. Fleming wants to see me next Tuesday to check it again. If it worsens, we will have to discuss possibly doing something to try and repair it. While I have not been put on official bed rest status, Dr. Fleming did tell me that I need to be a "couch potato." We are so excited that our little girl seems to be doing well, so the last thing we want now would be to go into preterm labor.
So the best thing would be to go back next week, see our baby girl still growing, and see that my cervix had recovered.
Again, thank you so much for your thoughts and prayers for our little girl. While we are still grieving the loss of Allie, today brought us much joy. We are so hopeful that I will be able to carry this little girl for many more weeks, and she would be a healthy little girl.
Thank you again! Love, Jessica
Monday, February 9, 2009
The army
Friends,
I want to echo what Jessica said yesterday. We don't pretend to think that we are the only people in the world with worries or problems, so the fact that all of you have invested yourselves in our world has made an incredible difference. There have been great gestures of kindness that have met anticipated and unanticipated needs. When returning to work wasn't easy, the countless kind words, understanding smiles, and pats on the back made me feel understood and supported without having to explain myself to anyone. I still cannot believe that so many people would take the time to read what has become our family journal.
Speaking to my brother yesterday, he shared how saddened they were to read of Allie's death. When he said he felt they were there with us in Minnesota, he said it perfectly. That is exactly what we felt: we were part of an army of friends and family who journeyed to Minnesota. I heard a song once written by someone grieving a loss who said, "Words aren't remembered, but presence is." Never has that been more true for us than this last week. As you have shared our grief and reminded us of your steady presence, you have validated to us the importance of Allie's life.
A friend told me today that these events have caused her and her husband to think about their faith in a new way. As we grapple with all the "Why?" questions, hearing statements like these brings us a greater sense of peace. It reminds us that this is about much more than us. To think it is possible that the death of our unborn child could bless the lives of two people she never met gives us comfort beyond measure.
------------------------------------------------
Tomorrow is the next ultrasound, and up until now I have not allowed myself to think about it. I don't want to see Allie again, to be reminded of the life that could have been. When I see her in my dreams, she is either 6 months old and is lying on her back, staring into her twin sister's eyes, grinning just like her mother does; or she is a grown woman, smiling at me before I walk her down the aisle. I don't want to be reminded that these will never be more than dreams. More than all this, we don't have it in us to lose another child.
I want to echo what Jessica said yesterday. We don't pretend to think that we are the only people in the world with worries or problems, so the fact that all of you have invested yourselves in our world has made an incredible difference. There have been great gestures of kindness that have met anticipated and unanticipated needs. When returning to work wasn't easy, the countless kind words, understanding smiles, and pats on the back made me feel understood and supported without having to explain myself to anyone. I still cannot believe that so many people would take the time to read what has become our family journal.
Speaking to my brother yesterday, he shared how saddened they were to read of Allie's death. When he said he felt they were there with us in Minnesota, he said it perfectly. That is exactly what we felt: we were part of an army of friends and family who journeyed to Minnesota. I heard a song once written by someone grieving a loss who said, "Words aren't remembered, but presence is." Never has that been more true for us than this last week. As you have shared our grief and reminded us of your steady presence, you have validated to us the importance of Allie's life.
A friend told me today that these events have caused her and her husband to think about their faith in a new way. As we grapple with all the "Why?" questions, hearing statements like these brings us a greater sense of peace. It reminds us that this is about much more than us. To think it is possible that the death of our unborn child could bless the lives of two people she never met gives us comfort beyond measure.
------------------------------------------------
Tomorrow is the next ultrasound, and up until now I have not allowed myself to think about it. I don't want to see Allie again, to be reminded of the life that could have been. When I see her in my dreams, she is either 6 months old and is lying on her back, staring into her twin sister's eyes, grinning just like her mother does; or she is a grown woman, smiling at me before I walk her down the aisle. I don't want to be reminded that these will never be more than dreams. More than all this, we don't have it in us to lose another child.
Sunday, February 8, 2009
No words to describe...
It has been three days since we posted our last blog and left the Mayo Clinic for home. So many thoughts and emotions have been running through me (Jessica) since then, and I feel compelled to share some of them with you.
When we left for Mayo, we had such great hope for the trip...so many doors had been opened for us to get there and have the procedure done that I knew this was in God's hands, that he had gone before us and prepared the way. While there were definitely moments of fear and anxiety before the procedure, I had this peace that everything was going to be "alright." The doctors and nurses were fantastic, and I knew we were in good hands. After the procedure, I came out of my sedation well and immediately noticed that I felt physically better. As they were still taking care of me in the operating room, they did an ultrasound and saw that both babies had made it through the procedure. I felt such relief, and for the first time in over two weeks, my worries seemed to be disappearing. I felt so happy that night, seeing Chad and feeling like my little girls were finally going to be okay.
As they wheeled me from my hospital room to the ultrasound the next morning, I felt a little nervous, but mostly confident that everything would be fine. But when the ultrasound revealed that Allie's little heart wasn't beating, I was shocked...and heartbroken. Everything seemed to be going according to plan, and she should be fine now. How could this be happening?
Every thought imaginable ran through my head, questioning what went wrong. I knew the "reason" things happened: Allie's cord blood flow was not normal the day before and she was most likely already struggling from the TTTS. The change in flow after the procedure was probably just too much for her already fragile little body to take. But I believe in God and his sovereignty...why didn't he miraculously fix this? Why did he allow this to happen to her?
I confess that I have asked God these questions multiple times over the last three days. I don't have an answer, and I don't know if I ever will. I don't understand, but I don't think God expects me to understand. The only thing I can do is trust.
There is a song our worship team sings, and the words say:
"Your ways are higher than our ways,
and the plans that You have made are good and true.
If you call us to the fire, You will not withdraw Your hand,
we'll gaze into the flames and look for You."
Ever since we found out about the girls having TTTS, I have been reading the Psalms. David and the other psalmists offer praise and thanksgiving to God, but there are many psalms where they are crying out to God, questioning Him, displaying anger, confusion, and sadness. And still, after their ranting and raving, they offer praise to God.
I've done a lot of ranting and raving in my own way these last couple of days, and by no means am I "over" what has happened. But I am still offering my praises to God, trusting that His ways are better than mine, that there is a reason He took Allie home, and while He has called us to this fire in life, He has not left us alone. He has shown himself in mighty and powerful ways.
Which is where each and every one of you comes in. I know I wrote a blog a few days ago expressing my thankfulness, but I can't seem to fully convey how floored we are by the goodness of all of you. Right now, you are God's physical arms for us, loving and comforting us in ways that we could never have imagined.
From those of you who have known us forever to those of you who we have never met, thank you for encouraging us through this journey. Every prayer, thought, blog message, email, card, phone call, text message, and facebook note has touched us in a way we cannot express. We cannot believe the acts of kindness that have been shown to us. My fear is we will never be able to fully express and repay what each and every one of you has done for us. I am trying to write thank yous, return texts and emails, etc., and I can't seem to do it fast enough. I'm sorry, and I hope until you receive your personal "thank you" that you know we are so extremely grateful.
I also know that many of you following our journey have experienced the hurt of losing a baby. And I want to say a special thank you to you, knowing that you feel just like we do, and that the hurt doesn't probably ever go away completely. It is probably hard to read our entries without feeling that hurt again, so we are especially touched that you are willing to walk this road with us.
Allie was a name that Chad chose and we both loved, and it means "of noble birth." I find this fitting, because she was never born here on earth, but was born into Heaven. Hope of course means "trust and faith." While we don't understand why we lost her, we trust and have faith that there is a reason.
Our prayer now is that our other baby girl is doing okay since the procedure. We go to the doctor again on Tuesday afternoon, and I admit we have fears about what will happen. We love this little girl with all our hearts too, and we desperately want to meet her. We will probably update the blog Tuesday night since our appointment isn't until 4:15.
Again, thank you to each and every one of you.
With much love, Jessica
When we left for Mayo, we had such great hope for the trip...so many doors had been opened for us to get there and have the procedure done that I knew this was in God's hands, that he had gone before us and prepared the way. While there were definitely moments of fear and anxiety before the procedure, I had this peace that everything was going to be "alright." The doctors and nurses were fantastic, and I knew we were in good hands. After the procedure, I came out of my sedation well and immediately noticed that I felt physically better. As they were still taking care of me in the operating room, they did an ultrasound and saw that both babies had made it through the procedure. I felt such relief, and for the first time in over two weeks, my worries seemed to be disappearing. I felt so happy that night, seeing Chad and feeling like my little girls were finally going to be okay.
As they wheeled me from my hospital room to the ultrasound the next morning, I felt a little nervous, but mostly confident that everything would be fine. But when the ultrasound revealed that Allie's little heart wasn't beating, I was shocked...and heartbroken. Everything seemed to be going according to plan, and she should be fine now. How could this be happening?
Every thought imaginable ran through my head, questioning what went wrong. I knew the "reason" things happened: Allie's cord blood flow was not normal the day before and she was most likely already struggling from the TTTS. The change in flow after the procedure was probably just too much for her already fragile little body to take. But I believe in God and his sovereignty...why didn't he miraculously fix this? Why did he allow this to happen to her?
I confess that I have asked God these questions multiple times over the last three days. I don't have an answer, and I don't know if I ever will. I don't understand, but I don't think God expects me to understand. The only thing I can do is trust.
There is a song our worship team sings, and the words say:
"Your ways are higher than our ways,
and the plans that You have made are good and true.
If you call us to the fire, You will not withdraw Your hand,
we'll gaze into the flames and look for You."
Ever since we found out about the girls having TTTS, I have been reading the Psalms. David and the other psalmists offer praise and thanksgiving to God, but there are many psalms where they are crying out to God, questioning Him, displaying anger, confusion, and sadness. And still, after their ranting and raving, they offer praise to God.
I've done a lot of ranting and raving in my own way these last couple of days, and by no means am I "over" what has happened. But I am still offering my praises to God, trusting that His ways are better than mine, that there is a reason He took Allie home, and while He has called us to this fire in life, He has not left us alone. He has shown himself in mighty and powerful ways.
Which is where each and every one of you comes in. I know I wrote a blog a few days ago expressing my thankfulness, but I can't seem to fully convey how floored we are by the goodness of all of you. Right now, you are God's physical arms for us, loving and comforting us in ways that we could never have imagined.
From those of you who have known us forever to those of you who we have never met, thank you for encouraging us through this journey. Every prayer, thought, blog message, email, card, phone call, text message, and facebook note has touched us in a way we cannot express. We cannot believe the acts of kindness that have been shown to us. My fear is we will never be able to fully express and repay what each and every one of you has done for us. I am trying to write thank yous, return texts and emails, etc., and I can't seem to do it fast enough. I'm sorry, and I hope until you receive your personal "thank you" that you know we are so extremely grateful.
I also know that many of you following our journey have experienced the hurt of losing a baby. And I want to say a special thank you to you, knowing that you feel just like we do, and that the hurt doesn't probably ever go away completely. It is probably hard to read our entries without feeling that hurt again, so we are especially touched that you are willing to walk this road with us.
Allie was a name that Chad chose and we both loved, and it means "of noble birth." I find this fitting, because she was never born here on earth, but was born into Heaven. Hope of course means "trust and faith." While we don't understand why we lost her, we trust and have faith that there is a reason.
Our prayer now is that our other baby girl is doing okay since the procedure. We go to the doctor again on Tuesday afternoon, and I admit we have fears about what will happen. We love this little girl with all our hearts too, and we desperately want to meet her. We will probably update the blog Tuesday night since our appointment isn't until 4:15.
Again, thank you to each and every one of you.
With much love, Jessica
Thursday, February 5, 2009
Allie Hope Reade
Deceased February 5, 2009.
Her twin sister is alive but the situation remains perilous for her life and health. There will be more to say on another day, but this is all we have energy to say for now.
Please no phone calls today. Text messages are welcome.
Her twin sister is alive but the situation remains perilous for her life and health. There will be more to say on another day, but this is all we have energy to say for now.
Please no phone calls today. Text messages are welcome.
Wednesday, February 4, 2009
The Waiting Game...over...for now
I have spoken to Dr. Watson on the phone and have seen him in person, but I have yet to see Jessica. She remains in the recovery area at this point. What I have been told...
The procedure was technically difficult because of the course of the amniotic membrane dividing the babies. For this reason, it took a little longer than expected. She had accumulated a notable amount of fluid, even just since yesterday. (I infer that it was a good thing we did not wait any longer.) Dr. Watson indentified 8 abnormal vascular connections and ablated them all. Afterwards, they removed 2.5 liters of fluid.
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Now that I started typing this, Jessica finally just arrived to the room! WHAT A SIGHT! She looks great. She said she was scared when she was going to the OR; when she arrived, there was a cast of thousands. Everyone was very professional and kind. She remembers little; the most painful part was getting the IV (which they trouble placing) and removing the drape. Immediately, she felt (and I see that she in fact is) significantly less swollen.
With her back in the room, we now await Dr. Watson. I spoke to my dad earlier, and Jessica's parents are on the phone now. It was great for us to hear Emmy's voice. In the last few days, she has gotten wise to the multiple ways adults say goodbye. She has also realized that she cannot get off the phone until she says them all. As a consequence, she now (abruptly) ends conversations with, "I miss you, bye-bye. Talk to you soon, bye-bye. I love you, bye-bye!", dropping the phone and running away before you have a chance to get a word in edge-wise. It reminds me a bit of my niece Sarah, who learned at a young age that the easiest way to get out of a conversation with me would be to take the phone to her father and say, "Daddy, your brother wants to talk to you."
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Dr. Watson just popped in. He said that they will plan to recheck the ultrasound tomorrow morning (as well as checking her cervix at that time). He believes that her going as far as she went with 9lb, 14.5 oz Emily bodes well.
--------------------------------
Questions with some answers, which raise more questions:
I read a recently published study entitled "ELA (Endoscopic Laser Ablation): When are We Out of the Woods?" It looked retrospectively at stillborns following ELA to find out when they were lost. 10% were lost within 48 hours of the procedure, and by four weeks, 90% of the babies that were going to die had died. (Obviously, the latter group likely represents babies that were going to be lost regardless of what happened.) Practically speaking, I think this means that we do not know when to stop being concerned. The best we can hope and pray for is for the babies to keep growing and for the fluid issue to resolve on its own (ie, not requiring repeat ELA or amnioreduction). We will just have to take it one day at a time, not knowing what the next ultrasound may show. If both babies are born alive, even then we may not know whether or not they sustained any neurologic damage or will have developmental problems.
For two people who wanted to plan ahead for the big change of having twins, our hands are tied. But, we embrace this with joy...as long as we don't know, it means we haven't lost our two youngest daughters.
The procedure was technically difficult because of the course of the amniotic membrane dividing the babies. For this reason, it took a little longer than expected. She had accumulated a notable amount of fluid, even just since yesterday. (I infer that it was a good thing we did not wait any longer.) Dr. Watson indentified 8 abnormal vascular connections and ablated them all. Afterwards, they removed 2.5 liters of fluid.
---------
Now that I started typing this, Jessica finally just arrived to the room! WHAT A SIGHT! She looks great. She said she was scared when she was going to the OR; when she arrived, there was a cast of thousands. Everyone was very professional and kind. She remembers little; the most painful part was getting the IV (which they trouble placing) and removing the drape. Immediately, she felt (and I see that she in fact is) significantly less swollen.
With her back in the room, we now await Dr. Watson. I spoke to my dad earlier, and Jessica's parents are on the phone now. It was great for us to hear Emmy's voice. In the last few days, she has gotten wise to the multiple ways adults say goodbye. She has also realized that she cannot get off the phone until she says them all. As a consequence, she now (abruptly) ends conversations with, "I miss you, bye-bye. Talk to you soon, bye-bye. I love you, bye-bye!", dropping the phone and running away before you have a chance to get a word in edge-wise. It reminds me a bit of my niece Sarah, who learned at a young age that the easiest way to get out of a conversation with me would be to take the phone to her father and say, "Daddy, your brother wants to talk to you."
--------------------------------
Dr. Watson just popped in. He said that they will plan to recheck the ultrasound tomorrow morning (as well as checking her cervix at that time). He believes that her going as far as she went with 9lb, 14.5 oz Emily bodes well.
--------------------------------
Questions with some answers, which raise more questions:
I read a recently published study entitled "ELA (Endoscopic Laser Ablation): When are We Out of the Woods?" It looked retrospectively at stillborns following ELA to find out when they were lost. 10% were lost within 48 hours of the procedure, and by four weeks, 90% of the babies that were going to die had died. (Obviously, the latter group likely represents babies that were going to be lost regardless of what happened.) Practically speaking, I think this means that we do not know when to stop being concerned. The best we can hope and pray for is for the babies to keep growing and for the fluid issue to resolve on its own (ie, not requiring repeat ELA or amnioreduction). We will just have to take it one day at a time, not knowing what the next ultrasound may show. If both babies are born alive, even then we may not know whether or not they sustained any neurologic damage or will have developmental problems.
For two people who wanted to plan ahead for the big change of having twins, our hands are tied. But, we embrace this with joy...as long as we don't know, it means we haven't lost our two youngest daughters.
The Big Day
Dr. Watson called this morning: Jessica will go back to the clinic at 11:00 a.m., where Dr. Davies (Dr. Watson's partner) will look at her ultrasound to be sure that he is confident about her anatomy too. Then, she will be admitted to Methodist Hospital (in the attached Eisenberg building) and will go to the OR at 1:00p.m. She will likely be discharged tomorrow after a repeat ultrasound. We are not committing yet whether we will come home tomorrow evening or Friday morning--we will just wait and see how Jessica feels.
One thing for which we have been very grateful: good sleep. I cannot attribute this to anything but prayer, because we were both sleeping very poorly at home before we left.
I am also grateful that amidst difficult circumstances, I have come to see what a courageous person Jessica is. I have always loved her joie de vivre, her infectious laugh, and her capacity for love and joy. In my younger and less mature days though, I was poorly equipped to understand or deal with the way she expressed sadness or grief. It scared me a bit; truthfully I felt out of control with it. One of the fears that came to my mind after we learned of this diagnosis two weeks ago was that the grief of losing a child might be too much for Jessica.
But this experience has taught me a great deal about her. She has fear, but she has faith. She grieves, but she continues to be grateful. The thought of losing a baby has made us both cry more days than not in the last two weeks, but she has not lost her capacity for joy. Yesterday, I watched her take a stand and tell Dr. Watson that we would rather lose these babies fighting for them than watch them die before our eyes. And last night, after we had both shed some tears, I shared how daunting it is to think about riding this emotional rollercoaster for another 2-3 months...and that is if things go well. She calmly but firmly said, "It is worth it."
It gives me great confidence that God is protecting our marriage through this.
One thing for which we have been very grateful: good sleep. I cannot attribute this to anything but prayer, because we were both sleeping very poorly at home before we left.
I am also grateful that amidst difficult circumstances, I have come to see what a courageous person Jessica is. I have always loved her joie de vivre, her infectious laugh, and her capacity for love and joy. In my younger and less mature days though, I was poorly equipped to understand or deal with the way she expressed sadness or grief. It scared me a bit; truthfully I felt out of control with it. One of the fears that came to my mind after we learned of this diagnosis two weeks ago was that the grief of losing a child might be too much for Jessica.
But this experience has taught me a great deal about her. She has fear, but she has faith. She grieves, but she continues to be grateful. The thought of losing a baby has made us both cry more days than not in the last two weeks, but she has not lost her capacity for joy. Yesterday, I watched her take a stand and tell Dr. Watson that we would rather lose these babies fighting for them than watch them die before our eyes. And last night, after we had both shed some tears, I shared how daunting it is to think about riding this emotional rollercoaster for another 2-3 months...and that is if things go well. She calmly but firmly said, "It is worth it."
It gives me great confidence that God is protecting our marriage through this.
Tuesday, February 3, 2009
Moving forward
Well, the appointment took 3.5 hours, but things are moving forward. The ultrasound showed that things have gotten worse for the babies. 10 days ago, the fluid pocket for the baby with too much fluid was 11cm--now it is 18cm. The doppler flow is now abnormal--which means that the staging of severity has progressed from stage I to stage III. This places Jessica in a risk category where laser ablation gives the babies a better chance of surviving than amnioreduction. He said, with what he sees now, the mortality for the babies would be ~100% without any intervention. We discussed at length his experience with the procedure, where he trained, etc. He has a partner in practice who will be there for the procedure as well.
Of concern, Jessica's cervical length has decreased to a worrisome degree. The risk of this is basically premature delivery and represents a separate but related issue. There are interventions that can be done to treat it, but Dr. Watson suggested we just watch it for now. There is some hope (how much I am not sure) that it may reverse once the pressure of too much amniotic fluid is removed.
Specifics about the procedure:
He will call us tomorrow morning to tell us a time, but it will be sometime tomorrow afternoon. Jessica will not be able to eat anything after 6:00 a.m. He said the procedure takes about 40 minutes or so once the scope is in. After giving Jessica some local anesthetic and IV pain medicine/sedation, they will make a small incision in the left lower quadrant of her abdominal wall. The scope will be passed through the abdominal wall and uterus and angled to get a very close look at the vessels. They will "map" the connections between the two babies, then use the laser to ablate the vessels in a specific sequence. When they are done, the scope is removed and the wound closed with a steri strip or a stitch.
When the procedure is done, Jessica will be transferred to the antepartum unit (ie, high-risk OB unit) for an overnight stay. Thursday morning/afternoon, they will recheck the ultrasound. Depending on how things go, we will head home Thursday or Friday.
He reemphasized that in the immediate period following the procedure, there is a higher risk with laser ablation than with amniocentesis. Specifically, there is a higher risk of Jessica's water breaking. If that happens at this point, it is likely we would lose both babies. However, taking this risk is better than doing nothing or only the amnioreduction.
While we are nervous going into this, we feel that this is the right thing to do to give both babies a good chance of not only survival, but also lowering their risk of problems once they are born. Our prayer is that no matter the outcome, we still made the best decision for our babies.
Thank you for continuing to keep us in your prayers. We are so comforted knowing so many people are praying for our little girls.
Of concern, Jessica's cervical length has decreased to a worrisome degree. The risk of this is basically premature delivery and represents a separate but related issue. There are interventions that can be done to treat it, but Dr. Watson suggested we just watch it for now. There is some hope (how much I am not sure) that it may reverse once the pressure of too much amniotic fluid is removed.
Specifics about the procedure:
He will call us tomorrow morning to tell us a time, but it will be sometime tomorrow afternoon. Jessica will not be able to eat anything after 6:00 a.m. He said the procedure takes about 40 minutes or so once the scope is in. After giving Jessica some local anesthetic and IV pain medicine/sedation, they will make a small incision in the left lower quadrant of her abdominal wall. The scope will be passed through the abdominal wall and uterus and angled to get a very close look at the vessels. They will "map" the connections between the two babies, then use the laser to ablate the vessels in a specific sequence. When they are done, the scope is removed and the wound closed with a steri strip or a stitch.
When the procedure is done, Jessica will be transferred to the antepartum unit (ie, high-risk OB unit) for an overnight stay. Thursday morning/afternoon, they will recheck the ultrasound. Depending on how things go, we will head home Thursday or Friday.
He reemphasized that in the immediate period following the procedure, there is a higher risk with laser ablation than with amniocentesis. Specifically, there is a higher risk of Jessica's water breaking. If that happens at this point, it is likely we would lose both babies. However, taking this risk is better than doing nothing or only the amnioreduction.
While we are nervous going into this, we feel that this is the right thing to do to give both babies a good chance of not only survival, but also lowering their risk of problems once they are born. Our prayer is that no matter the outcome, we still made the best decision for our babies.
Thank you for continuing to keep us in your prayers. We are so comforted knowing so many people are praying for our little girls.
In Rochester safely
Yesterday we departed by 1:00pm and had a good trip up here. We made frequent stops and Jessica worked her legs out as we were driving to minimize the chance of getting a blood clot. On one such stop, I was washing my hands in the restroom when a gentleman (who appeared to be a trucker) suddenly entered. It surprised me, since it seemed that we were the only people at this particular gas station. In fact, I had been feeling comfortable enough about our privacy that I was singing at the moment the gentleman opened the door. Earlier yesterday morning, I ran with my iPod listening to "Chicago's Greatest Hits: 1982-1989"; you can therefore imagine how I might have the song "Hard to Say I'm Sorry" in my head. It so happened that as the door swung open, I was singing the lyrics, "Hold me now...". The trucker and I made eye contact just as I sang the word "now." His look of surprise and confusion quickly turned to a look of disdain. My eyes fell to the floor and I promptly exited.
As some of you may know, the clinic complex in the downtown area amounts to several high-rise buildings, all adjoined by underground walkways (the "subway"). We had no idea when our church family got us a room at the Residence Inn that the hotel would be an easy two-block walk to the clinic where Jessica has her appointment today. There is a subway connecting the hotel to the clinic in fact. The hotel is absolutely the closest place we could have stayed to go to this particular clinic. A special thanks to Adrienne for setting this up.
After getting a good night's sleep, we enjoyed a complimentary warm breakfast with the thriving tourist crowd here in Rochester. It felt a bit like being at work to me: we were the youngest people there, and throughout the room you could hear people sharing stories about their medical problems. Jokes aside, there was an air of community, the spoken and unspoken sense of shared experience of coming to this place and putting your health and life in the hands of the Mayo healthcare team.
Today's schedule:
12:30-Jessica will go for her third ultrasound in three weeks. Please pray for healthy babies!
1:30ish-we will have the appointment with Dr. Watson
I wish I had more details. The biggest subjects for prayer are for the babies' health and for Jessica to be a candidate for the procedue. I will write more later today.
This evening, we hope to go see a movie--something we have not done in a long time.
A couple additions to the list of people for whom we are thankful:
1. Jessica's parents for watching Emily (and Baxter) this week
2. People at work:
-My program directors and chief residents for not only letting me go but ensuring that I did not worry about how things would be covered.
-Jay Hawkins, Abby Cheloha and Kara Meinke-Baehr for directly shouldering more burden in my absence. (To those of you who are doing so without my knowledge, thank you.)
-Dr. Ganti, who is doing more work towards a research paper than he would otherwise be doing.
-Drs. Cannella and Young for allowing me to forward my pager for a few hours Sunday night so Jessica and I could go have an anniversary dinner
-All the friends at work who took the time to ask, listen, and give me a pat on the back with what we are going through.
As some of you may know, the clinic complex in the downtown area amounts to several high-rise buildings, all adjoined by underground walkways (the "subway"). We had no idea when our church family got us a room at the Residence Inn that the hotel would be an easy two-block walk to the clinic where Jessica has her appointment today. There is a subway connecting the hotel to the clinic in fact. The hotel is absolutely the closest place we could have stayed to go to this particular clinic. A special thanks to Adrienne for setting this up.
After getting a good night's sleep, we enjoyed a complimentary warm breakfast with the thriving tourist crowd here in Rochester. It felt a bit like being at work to me: we were the youngest people there, and throughout the room you could hear people sharing stories about their medical problems. Jokes aside, there was an air of community, the spoken and unspoken sense of shared experience of coming to this place and putting your health and life in the hands of the Mayo healthcare team.
Today's schedule:
12:30-Jessica will go for her third ultrasound in three weeks. Please pray for healthy babies!
1:30ish-we will have the appointment with Dr. Watson
I wish I had more details. The biggest subjects for prayer are for the babies' health and for Jessica to be a candidate for the procedue. I will write more later today.
This evening, we hope to go see a movie--something we have not done in a long time.
A couple additions to the list of people for whom we are thankful:
1. Jessica's parents for watching Emily (and Baxter) this week
2. People at work:
-My program directors and chief residents for not only letting me go but ensuring that I did not worry about how things would be covered.
-Jay Hawkins, Abby Cheloha and Kara Meinke-Baehr for directly shouldering more burden in my absence. (To those of you who are doing so without my knowledge, thank you.)
-Dr. Ganti, who is doing more work towards a research paper than he would otherwise be doing.
-Drs. Cannella and Young for allowing me to forward my pager for a few hours Sunday night so Jessica and I could go have an anniversary dinner
-All the friends at work who took the time to ask, listen, and give me a pat on the back with what we are going through.
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