About a month ago, I asked our nurse if it might be possible for David and I to have private birthing classes. I am still pregnant and going to deliver Zoe at some point and am actually quite nervous about the process. Our situation only heightens my nerves regarding the experience. David and I want to go through birthing classes but we felt that it would be easier to do them by ourselves instead of being in a class full of people who are excited about the perfectly healthy babies they are expecting. Fortunately, our nurse contacted someone who had previously led the classes and she was more than willing to do private classes for David and me. Dana Crosby was the nurse’s name. She told us that she was honored to be asked by Karen (our nurse) and was glad that she could help us out in this way. We were so thankful for her willingness.
We spent about 3 ½ hours with Dana and were able to cover most things that are covered in 4 weeks with most couples. Dana spent most of the time talking about the stages of labor, breathing, pushing, epidurals, and recovery. Besides flinching a couple of times during the birthing video, I actually held my emotions in pretty well…at least until she talked about the services they provide with families who have a baby that dies. Dana explained that they take lots of pictures, take hand and foot prints, and basically have a mini calling hour for the family in the delivery room. Though I know it is a possibility, I just can’t bare the thought of losing my little girl so shortly after bringing her into this world. We have been through so much already. God, please spare us from this additional devastation.
Dana was so kind to us. She is currently a labor and delivery nurse and seems very compassionate. She is one of the nurses that work with families who lose their babies. She offered us info that could be given to family members regarding what to do when a loved one's baby dies. I declined the material and decided that we would just get it if the need arose. I really just want to take it one step at a time right now. I want to focus on the fighter that Zoe is and the progress she is making. I really didn’t want to have the pamphlets about what to do if she dies lying around.
We hugged Dana and sincerely thanked her as we left. It was so wonderful for her to spend the entire evening with us. David and I talked about doing something nice for her in return…probably a gift certificate or something. David commented on our way out about how it kind of felt surreal. “I feel like we are leaving knowing things that we didn’t know when we went into the hospital.” I think he feels more prepared. I know that I certainly do. It is nice to feel like we are one step closer and like there is one less thing to worry about.
Thursday, June 30, 2005
Wednesday, June 29, 2005
Our standing appointment (6-29-05)…
David and I arrived right on time and Dr. Landwehr was there doing some paperwork. Again, it was really nice to know that we would not have to wait long before beginning the ultrasound. We went right into the ultrasound room and Becky immediately started trying to find Zoe’s heartbeat. There it was…still strong…150bpm. She was not moving a lot during the initial part of the ultrasound but really woke up later on and even Becky could feel her moving through the ultrasound wand that she had on my stomach.
One of the main objectives for the day was to take measurements of Zoe to see if she is growing well. Becky took measurements of Zoe’s head, femur and feet. Zoe is in the 47th percentile with her weight/size which is estimated at 1 lb 11 oz. When measuring Zoe’s femur and foot, Becky said that on chromosomal abnormal babies, the foot is usually much smaller than the femur but that they are supposed to be the same. Zoe’s foot and femur were exactly the same length. Becky always feels that Zoe’s features do not match up to her diagnosis.
Becky again tried to find Zoe’s right hand to see if we could still detect 6 fingers. Zoe keeps hiding that hand. This time she had the hand in view but her fingers were clinched in a fist and we just couldn’t get a finger count. It kind of makes me wonder if God is doing something with her hand and He isn’t ready for us to see it yet. Becky also began to look at Zoe’s brain. When she was taking measurements of her brain, Becky was pointing out water that she still detected. I became very confused but tried not to worry about it. David didn’t seem concerned. Dr. Landwehr came in a little later and we asked him to also look at Zoe’s brain. He told Becky that she was not measuring water but that she was measuring brain mantel. It was almost like they began arguing because she felt that he had told her one thing another time. I didn’t really care to hear them argue, I just wanted to know if Zoe’s brain looked good or not. Dr. Landwehr said that she does not have water on her brain but he has no guarantees about the quality of the brain mantel. That was fine…I just wanted to see that it still looked good at this time and it did. Becky left the room and Dr. Landwehr continued to ultrasound Zoe’s head. I asked if he could also look at her nose while he was at it. I explained that at one time we had been told that Zoe does not have a nasal bone and I wanted to know what he thought. For some reason, I had never really believed that she actually didn’t have her nasal bone. Dr. Landwehr looked and pointed out Zoe’s nasal bone and stated that she would not have a distinct nose if there was no nasal bone. Zoe’s nose looks good.
Again, we left feeling good about the appointment. Our little girl is really hanging in there. She physically looks well and her brain still seems to be looking great. We did not spend much time looking at the heart so we are not sure if there are any changes there. Nonetheless, we are grateful for the growth and progress little Zoe is making. David asked if I would pray as we pulled away from the hospital and headed to Taco Bell for lunch. I prayed and thanked God for the good news we continued to receive on Zoe. I asked that He not allow me to get my hopes up if there are only to be dashed later on. I want to believe that God is doing miraculous things in Zoe and I want to be confident in that. David and I talked and determined that we just need to be happy with what we are finding out at this time. Thank you Jesus for our little girl and what you are doing in her!
One of the main objectives for the day was to take measurements of Zoe to see if she is growing well. Becky took measurements of Zoe’s head, femur and feet. Zoe is in the 47th percentile with her weight/size which is estimated at 1 lb 11 oz. When measuring Zoe’s femur and foot, Becky said that on chromosomal abnormal babies, the foot is usually much smaller than the femur but that they are supposed to be the same. Zoe’s foot and femur were exactly the same length. Becky always feels that Zoe’s features do not match up to her diagnosis.
Becky again tried to find Zoe’s right hand to see if we could still detect 6 fingers. Zoe keeps hiding that hand. This time she had the hand in view but her fingers were clinched in a fist and we just couldn’t get a finger count. It kind of makes me wonder if God is doing something with her hand and He isn’t ready for us to see it yet. Becky also began to look at Zoe’s brain. When she was taking measurements of her brain, Becky was pointing out water that she still detected. I became very confused but tried not to worry about it. David didn’t seem concerned. Dr. Landwehr came in a little later and we asked him to also look at Zoe’s brain. He told Becky that she was not measuring water but that she was measuring brain mantel. It was almost like they began arguing because she felt that he had told her one thing another time. I didn’t really care to hear them argue, I just wanted to know if Zoe’s brain looked good or not. Dr. Landwehr said that she does not have water on her brain but he has no guarantees about the quality of the brain mantel. That was fine…I just wanted to see that it still looked good at this time and it did. Becky left the room and Dr. Landwehr continued to ultrasound Zoe’s head. I asked if he could also look at her nose while he was at it. I explained that at one time we had been told that Zoe does not have a nasal bone and I wanted to know what he thought. For some reason, I had never really believed that she actually didn’t have her nasal bone. Dr. Landwehr looked and pointed out Zoe’s nasal bone and stated that she would not have a distinct nose if there was no nasal bone. Zoe’s nose looks good.
Again, we left feeling good about the appointment. Our little girl is really hanging in there. She physically looks well and her brain still seems to be looking great. We did not spend much time looking at the heart so we are not sure if there are any changes there. Nonetheless, we are grateful for the growth and progress little Zoe is making. David asked if I would pray as we pulled away from the hospital and headed to Taco Bell for lunch. I prayed and thanked God for the good news we continued to receive on Zoe. I asked that He not allow me to get my hopes up if there are only to be dashed later on. I want to believe that God is doing miraculous things in Zoe and I want to be confident in that. David and I talked and determined that we just need to be happy with what we are finding out at this time. Thank you Jesus for our little girl and what you are doing in her!
Tuesday, June 28, 2005
The Living Room (6-28-05)…
Jeff and Sarah showed up at the Living Room tonight. They were supposed to be playing at a show but at the last minute were able to join us. It was great to see them and I was able to express to Sarah how nice it was for her to offer to help with the shower. I know that Sarah is holding out hope that God will heal Zoe and that she will be okay.
I sat with Jeff and Sarah during the service which made me feel a little more comfortable. After the service, I thought that I would try and leave right away because I had some things to get done at home. However, when I was getting ready to leave, a couple of girls came up and told me that they think about me all the time and pray for us. They had never said anything to this point and I was beginning to feel more and more strange around them, wondering if they even cared. Since they opened the door, I decided to tell them about new things we had found out about Zoe and asked that they pray for her heart. As I was talking, two other girls stepped closer and listened in on the conversation. I know that it was uncomfortable to finally say something, but it really felt nice to know that they have been thinking about us. I left the Living Room feeling pretty decent.
I sat with Jeff and Sarah during the service which made me feel a little more comfortable. After the service, I thought that I would try and leave right away because I had some things to get done at home. However, when I was getting ready to leave, a couple of girls came up and told me that they think about me all the time and pray for us. They had never said anything to this point and I was beginning to feel more and more strange around them, wondering if they even cared. Since they opened the door, I decided to tell them about new things we had found out about Zoe and asked that they pray for her heart. As I was talking, two other girls stepped closer and listened in on the conversation. I know that it was uncomfortable to finally say something, but it really felt nice to know that they have been thinking about us. I left the Living Room feeling pretty decent.
A really nice gesture (6-28-05)…
For some reason, last night was emotional and I woke up feeling slightly vulnerable this morning. I knew that today was going to be a fairly busy day so I needed to get into work a little early. I arrived at the Trustee’s office at about 8:45. When I opened the door to my office, there was a big basket of gifts sitting on my desk. The office had put together a care package for David and I just to let us know that we are special and that they are thinking of us. I looked around and there was another large gift bag and a beautiful rose bush …all for David and I. I started to cry when I saw everything because it meant so much. This was the same office were most didn’t even know why I had been gone for a week when David’s mom died and now they are doing something so special like this. I wanted to tell everyone thanks but decided to send out an email because I thought I might be too emotional.
I only opened a couple of gifts when I initially saw the packages. I thought that it might be nice to open them sporadically throughout the next several days. I opened up two gift certificates…one for $50 to Here We Grow Again and one for $30 to Chili’s for David. How incredibly generous and thoughtful! I called David right away to tell him what the office had done. I felt really special and cared for. It also meant a lot to David that they had put so much effort into making me feel important.
I only opened a couple of gifts when I initially saw the packages. I thought that it might be nice to open them sporadically throughout the next several days. I opened up two gift certificates…one for $50 to Here We Grow Again and one for $30 to Chili’s for David. How incredibly generous and thoughtful! I called David right away to tell him what the office had done. I felt really special and cared for. It also meant a lot to David that they had put so much effort into making me feel important.
Monday, June 27, 2005
They wanted to Shower ME!
Sarah offers to help (6-27-05)…
Nichole told me that Sarah McLaughlin called her today asking about a shower for me. Sarah said that she wanted to throw a shower before finding out about the Trisomy 13 and that her desire has not changed. It was ironic that I had just told Nichole what I was wanting and then Sarah called. It felt really nice to know that Sarah was still thinking in this direction. The shower has been set for July 31. Since I haven’t been thinking about a shower over the past 5 weeks, I need to get in gear now and register. (Within just a few days, Nichole, Sarah, Karen and Jennifer were all helping with the shower.)
Nichole told me that Sarah McLaughlin called her today asking about a shower for me. Sarah said that she wanted to throw a shower before finding out about the Trisomy 13 and that her desire has not changed. It was ironic that I had just told Nichole what I was wanting and then Sarah called. It felt really nice to know that Sarah was still thinking in this direction. The shower has been set for July 31. Since I haven’t been thinking about a shower over the past 5 weeks, I need to get in gear now and register. (Within just a few days, Nichole, Sarah, Karen and Jennifer were all helping with the shower.)
Sunday, June 26, 2005
An emotional church service (6-26-05)…
Today at church, we celebrated baptism. I sat with Al and Karen because David was going to be occupied during much of the service and would not be able to sit with me. In fact, David was performing the baptisms. Though I wished that David could be sitting with me, I did fine through the initial worship time and the sermon which was on the significance of baptism. However, we then progressed to the four baptisms. The second person to be baptized was a little girl who was about 6 years old, Kaylyn Jones. It struck me so hard as I watched David interact with Kaylyn, ask her if she has accepted Jesus Christ as her Lord and Savior and emerge her into the pool of water. I have ALWAYS thought that David would be an amazing father to a daughter and when I see him interact with little girls that thought is just confirmed even more. My mind soon started drifting to Zoe and wondering how it is going to end. Will David ever have the opportunity to baptize his own daughter? Will she be in a wheel chair and what would that look like for him to hold her and lower her into the water. As I imagined the scenarios and the possibility that none of them may occur because she may die so early in life, I could not hold back my emotions. The tears were streaming down my face for the remainder of the service…I could not hold back even a bit.
After the service came to a close, I began looking for David and hoped that he was moving my direction. It seemed that there were a lot of people around me to hug me today and I just told them that I was having an emotional morning. Al asked what he could do for me and I just told him that it was hard seeing David baptize Kaylyn wondering if he would even have a chance to do that with Zoe. He just hugged me for a while. I didn’t know that Karen had went to David to tell him that he might want to check on me. Soon, David came and pulled my hand from his dad and took me to a private area where he just hugged me and let me cry. I told him that it was really difficult to watch him baptize Kaylyn and how I hoped he would have the opportunity some day to baptize our Zoe. He said, “wouldn’t that be great!”
After the service came to a close, I began looking for David and hoped that he was moving my direction. It seemed that there were a lot of people around me to hug me today and I just told them that I was having an emotional morning. Al asked what he could do for me and I just told him that it was hard seeing David baptize Kaylyn wondering if he would even have a chance to do that with Zoe. He just hugged me for a while. I didn’t know that Karen had went to David to tell him that he might want to check on me. Soon, David came and pulled my hand from his dad and took me to a private area where he just hugged me and let me cry. I told him that it was really difficult to watch him baptize Kaylyn and how I hoped he would have the opportunity some day to baptize our Zoe. He said, “wouldn’t that be great!”
Saturday, June 25, 2005
A shower would still be nice (6-25-05)…
One of the fun things about being pregnant that I am sure most expecting mom’s look forward to is a Baby Shower. During the last several years I have thrown approximately 10 baby showers. It started to become harder and I hosted less of them during our struggle with infertility. Nonetheless, when I became pregnant, I selfishly looked forward to it being my turn to be celebrated. I felt so special once finding out we were pregnant when several people talked about throwing a shower for us.
However, when we found out about Zoe’s condition, everything became confusing. No one has mentioned a shower in the past 5 weeks and I am sure they are wondering if it would be a good or a bad idea. I have wondered what to do and struggled with whether I am supposed to be preparing for Zoe’s life or her death. After finally receiving some encouraging news on Wednesday, I began to feel that it would be more appropriate to prepare for Zoe’s life, even if it does end up being a short life. I decided that I would ask Nichole (my sister-in-law) if she still wanted to host a shower and include people around here that I have kept closely informed about Zoe’s condition. I felt that this might be the group of people who would be more hopeful with me and desire to support us in this way. Nichole said that she would love to host the shower and we began to talk about potential dates. Though it is strange for me to ask specifically for this shower, it felt like a relief to begin to think about preparing for her life. It also takes away the uncomfortable questioning that others may be going through.
However, when we found out about Zoe’s condition, everything became confusing. No one has mentioned a shower in the past 5 weeks and I am sure they are wondering if it would be a good or a bad idea. I have wondered what to do and struggled with whether I am supposed to be preparing for Zoe’s life or her death. After finally receiving some encouraging news on Wednesday, I began to feel that it would be more appropriate to prepare for Zoe’s life, even if it does end up being a short life. I decided that I would ask Nichole (my sister-in-law) if she still wanted to host a shower and include people around here that I have kept closely informed about Zoe’s condition. I felt that this might be the group of people who would be more hopeful with me and desire to support us in this way. Nichole said that she would love to host the shower and we began to talk about potential dates. Though it is strange for me to ask specifically for this shower, it felt like a relief to begin to think about preparing for her life. It also takes away the uncomfortable questioning that others may be going through.
Songs...
You’re Beautiful (6-25-05)…
A couple of days after finding out that Zoe has Trisomy 13, this song by Bob Carlisle came to mind. I remember hearing this song a lot about a year ago and it making me emotional…and at that point, I couldn’t even really relate to the words except knowing that I wanted a baby badly. Now the words take on a whole new significance.
http://www.youtube.com/watch?v=Y--qzJHC70Q
You’re Beautiful
By Bob Carlisle
Down a cold and darkened hallway
A doctor stood alone,
With a young and frightened father
Who knew something was wrong
He said, Son this isn't easy
But we really need to talk.
So he put his arm around him
And they began to walk.
He said your wife is finally sleeping
She just needs to be alone right now.
And your baby, well she's healthy,
But there's something you should know.
Son, she's slightly less than perfect,
And there's nothing we could do.
So before you go to see her,
I thought I'd talk to you.
As the young man held the warm,
And sleeping bundle to his chest,
He saw the imperfections,
And although he tried his best,
He couldn't stop the tears from falling,
As he held his little girl.
And in a low and trembling voice,
He gently said these words;
You're beautiful in every way, so beautiful.
How I've waited for this day.
If the world was offered to me,
I just couldn't make the trade.
Cause you're beautiful
When I think of how I've fallen,
And all the times I've tried,
To hide my imperfections,
From my Father's eyes.
There's a voice that still is calling,
Deep inside of me.
And I can always hear it
when I get on my knees.
You're beautiful in every way, so beautiful.
How I've waited for this day.
When the world was offered to me,
I just couldn't make the trade.
Cause you're beautiful.
You'd be amazed at how some things matter,
And some things don't,
When you're seen through the eyes of God.
Though we try to hide our darkness,
And fill our dreams,
He only sees what's in your heart.
And you're beautiful, in every way, so beautiful.
How I've waited for this day.
When the world was offered to me,
I just couldn't make the trade.
Cause you're beautiful
I know God knows, you're beautiful
You're beautiful...You're beautiful...You're beautiful...
A couple of days after finding out that Zoe has Trisomy 13, this song by Bob Carlisle came to mind. I remember hearing this song a lot about a year ago and it making me emotional…and at that point, I couldn’t even really relate to the words except knowing that I wanted a baby badly. Now the words take on a whole new significance.
http://www.youtube.com/watch?v=Y--qzJHC70Q
You’re Beautiful
By Bob Carlisle
Down a cold and darkened hallway
A doctor stood alone,
With a young and frightened father
Who knew something was wrong
He said, Son this isn't easy
But we really need to talk.
So he put his arm around him
And they began to walk.
He said your wife is finally sleeping
She just needs to be alone right now.
And your baby, well she's healthy,
But there's something you should know.
Son, she's slightly less than perfect,
And there's nothing we could do.
So before you go to see her,
I thought I'd talk to you.
As the young man held the warm,
And sleeping bundle to his chest,
He saw the imperfections,
And although he tried his best,
He couldn't stop the tears from falling,
As he held his little girl.
And in a low and trembling voice,
He gently said these words;
You're beautiful in every way, so beautiful.
How I've waited for this day.
If the world was offered to me,
I just couldn't make the trade.
Cause you're beautiful
When I think of how I've fallen,
And all the times I've tried,
To hide my imperfections,
From my Father's eyes.
There's a voice that still is calling,
Deep inside of me.
And I can always hear it
when I get on my knees.
You're beautiful in every way, so beautiful.
How I've waited for this day.
When the world was offered to me,
I just couldn't make the trade.
Cause you're beautiful.
You'd be amazed at how some things matter,
And some things don't,
When you're seen through the eyes of God.
Though we try to hide our darkness,
And fill our dreams,
He only sees what's in your heart.
And you're beautiful, in every way, so beautiful.
How I've waited for this day.
When the world was offered to me,
I just couldn't make the trade.
Cause you're beautiful
I know God knows, you're beautiful
You're beautiful...You're beautiful...You're beautiful...
Email Update to Friends
Email to friends (6-25-05)…
We had another ultrasound appointment on Wednesday. It went very smooth this time. The doctor and the neonatologist were actually chatting and waiting on us when we arrived. We were immediately taken into the ultrasound room and the tech began getting pictures of Zoe. Her heart rate was 158bpm and she was wigging around quite a bit. She seemed to have her feet crossed and one hand behind her head a lot of the time like she was just chilling.
After getting a few pictures, we stopped the ultrasound and spoke with Dr. Landwehr and Dr. Kundenricht (the neonatologist). Dr. Kundenricht was very nice and seemed to be a compassionate individual. He (or his partner who I have heard wonderful things about) and a team will be there when Zoe is born to get an immediate assessment of her condition. Dr. Kundenricht trained for 6 years at Riley Children's Hospital and has seen several Trisomy 13 babies from that experience. We spoke about level of care and feel that we have a lot more information to help us think through possibilities. It was a relief to know that though we should have some decisions made prior to birth, many of them can be made as they assess Zoe's condition every few hours. Because she appears to be so strong at this time, they do not foresee that I would deliver in the next few weeks, which should at least increase her chances of surviving for at least some period of time. I am just over 24 weeks right now.
After speaking with the doctors for quite a while, Dr. Landwehr asked if he could take a look at Zoe and see how she was doing. Two weeks ago, we found out two critical situations facing Zoe: 1) she had significant water on her brain and 2) she had a heart condition that was causing one chamber to not fill up as much as the others, causing him to think that a ventricle was not working. Because of the amount of water on Zoe's brain on top of the complexity of the heart abnormality, Dr. Landwehr believed that Zoe would not even be a candidate for the heart surgery. During the few days prior to our appointment, I had been praying that God would allow us to see some specific sign that Zoe was improving. Wednesday, the ultrasound showed that the water on Zoe's brain had significantly decreased and that her brain was growing to the point that it needs to be. Dr. Landwehr said "I have never seen that happen". His reasoning was that a blockage had opened up and allowed the water to drain. Our reasoning is that God is working in Zoe. He examined her heart again and though the abnormal chamber still exists, Zoe has another abnormality in the wall between the right and left sides of the heart which is actually allowing her heart to compensate in a way. It is allowing the blood to be oxygenated some which is a necessary function of the heart.
David and I felt much different after this appointment. Typically we leave feeling confused and not sure whether to be encouraged or discouraged. This time, we left in a good mood and actually smiling.
Thank you so much for your prayers and your concern over our lives. Zoe is being prayed for by so many people in so many corners of the states and the world. Words cannot tell you how much they are appreciated and felt. Please continue to pray for Zoe’s heart and for continued improvements with her brain.
We will be having another appointment next Wednesday and I will update you more then. Thank you friends!
Love,
Christina
We had another ultrasound appointment on Wednesday. It went very smooth this time. The doctor and the neonatologist were actually chatting and waiting on us when we arrived. We were immediately taken into the ultrasound room and the tech began getting pictures of Zoe. Her heart rate was 158bpm and she was wigging around quite a bit. She seemed to have her feet crossed and one hand behind her head a lot of the time like she was just chilling.
After getting a few pictures, we stopped the ultrasound and spoke with Dr. Landwehr and Dr. Kundenricht (the neonatologist). Dr. Kundenricht was very nice and seemed to be a compassionate individual. He (or his partner who I have heard wonderful things about) and a team will be there when Zoe is born to get an immediate assessment of her condition. Dr. Kundenricht trained for 6 years at Riley Children's Hospital and has seen several Trisomy 13 babies from that experience. We spoke about level of care and feel that we have a lot more information to help us think through possibilities. It was a relief to know that though we should have some decisions made prior to birth, many of them can be made as they assess Zoe's condition every few hours. Because she appears to be so strong at this time, they do not foresee that I would deliver in the next few weeks, which should at least increase her chances of surviving for at least some period of time. I am just over 24 weeks right now.
After speaking with the doctors for quite a while, Dr. Landwehr asked if he could take a look at Zoe and see how she was doing. Two weeks ago, we found out two critical situations facing Zoe: 1) she had significant water on her brain and 2) she had a heart condition that was causing one chamber to not fill up as much as the others, causing him to think that a ventricle was not working. Because of the amount of water on Zoe's brain on top of the complexity of the heart abnormality, Dr. Landwehr believed that Zoe would not even be a candidate for the heart surgery. During the few days prior to our appointment, I had been praying that God would allow us to see some specific sign that Zoe was improving. Wednesday, the ultrasound showed that the water on Zoe's brain had significantly decreased and that her brain was growing to the point that it needs to be. Dr. Landwehr said "I have never seen that happen". His reasoning was that a blockage had opened up and allowed the water to drain. Our reasoning is that God is working in Zoe. He examined her heart again and though the abnormal chamber still exists, Zoe has another abnormality in the wall between the right and left sides of the heart which is actually allowing her heart to compensate in a way. It is allowing the blood to be oxygenated some which is a necessary function of the heart.
David and I felt much different after this appointment. Typically we leave feeling confused and not sure whether to be encouraged or discouraged. This time, we left in a good mood and actually smiling.
Thank you so much for your prayers and your concern over our lives. Zoe is being prayed for by so many people in so many corners of the states and the world. Words cannot tell you how much they are appreciated and felt. Please continue to pray for Zoe’s heart and for continued improvements with her brain.
We will be having another appointment next Wednesday and I will update you more then. Thank you friends!
Love,
Christina
Friday, June 24, 2005
Another pregnancy (6-24-05)…
Today, I was speaking with a co-worker from one of my offices and learned that a good friend was pregnant. I am glad that she is pregnant but felt hurt that I was finding out from someone other than her. Again, it just made it feel like no one knows how to talk to me about things related to pregnancy right now. I understand it being awkward but I hate feeling like the “weird one”. I came home and found out that the friend had actually sent me an email a couple of days ago but I was just receiving it today. Though I found out in another way, I know that her intentions were good and I felt a little relieved that she had attempted to tell me before I had found out through the grapevine. It is difficult not to feel like an alien sometimes. I don’t know quite what to do with my emotions let alone others knowing what to do with them and with theirs as well.
Thursday, June 23, 2005
Nine Months (6-22-05)…
When David and I originally started trying to get pregnant (over two years ago), David impulsively wanted to buy the movie “Nine Months”. I remember that we were walking through Walmart and he began perusing the discount video display. He pulled out “Nine Months” and said, “Honey, we have to get this.” Neither of us had even heard of the movie but we decided to purchase it with the intent of watching it as soon as we found out we were pregnant. We never realized that we would have to wait so long.
In January, after discovering that I was pregnant, David and I were happy that we would finally get to watch “Nine Months”. For some reason, we did not get around to watching it for the first few months.
Unfortunately, we found out that Zoe has Trisomy 13 before having the opportunity to watch “Nine Months”. At that point, we thought we would never want to watch the movie. “Nine Months” was supposed to be a celebration and we didn’t quite feel like celebrating Zoe’s disorder. However, after today’s appointment, David and I were both feeling pretty good about Zoe’s progress. After returning from work, David asked if I would be okay with us watching “Nine Months” tonight. I thought that it was a good idea and so we did. David laughed a lot and thought that he could relate to Hugh Grant’s character of not being ready to be a father. David would say that was him for the first 5 years of marriage. I thought the movie was okay but most of all was happy that we had finally gotten to watch the movie.
In January, after discovering that I was pregnant, David and I were happy that we would finally get to watch “Nine Months”. For some reason, we did not get around to watching it for the first few months.
Unfortunately, we found out that Zoe has Trisomy 13 before having the opportunity to watch “Nine Months”. At that point, we thought we would never want to watch the movie. “Nine Months” was supposed to be a celebration and we didn’t quite feel like celebrating Zoe’s disorder. However, after today’s appointment, David and I were both feeling pretty good about Zoe’s progress. After returning from work, David asked if I would be okay with us watching “Nine Months” tonight. I thought that it was a good idea and so we did. David laughed a lot and thought that he could relate to Hugh Grant’s character of not being ready to be a father. David would say that was him for the first 5 years of marriage. I thought the movie was okay but most of all was happy that we had finally gotten to watch the movie.
Wednesday, June 22, 2005
Our standing appointment (23 weeks 6 days; 6-22-05)…
I had two family counseling sessions prior to our doctor’s appointment today. I wasn’t feeling as uptight as I felt before the other appointments. I knew that they were going to be more diligent about having the neonatologist at this appointment since they didn’t show last time and though Zoe hasn’t been moving strongly today, I know that she has still been moving and therefore is still alive.
David and I arrived at the hospital right on time (11:15). We saw the ultrasound tech coming out of the snack shop when we stepped in the door therefore I was certain that she wasn’t working on anyone else at the time. When we walked into the office, Dr. Landwehr was talking to another man who we later found out was the neonatologist, Dr. Kundenricht. They seemed to be relaxed and actually waiting for us…a change from the other appointments. We found out that one of the nurses told Dr. Kundenricht, “I dare you not to show up.” He must have taken her seriously.
Becky took us into the ultrasound room and immediately started looking at Zoe. She was wiggling just a little and her heartbeat was 158bpm, which continues to be strong. Becky took time looking for Zoe’s right hand which she never got a good picture of and therefore we are to assume that it still has 6 fingers like we had originally seen. She got a good picture of Zoe’s feet and toes. Though there still seem to be 5 toes on each foot, she thought that her feet appear a little stubby.
Dr. Landwehr and Dr. Kundenricht came into the exam room about 15 minutes after Becky had started the ultrasound. They started talking to David and me and looked at the ultrasound screen a little but it seemed that their biggest concern was talking to us at that time. I was starting to get slightly light-headed lying on my back so Becky stopped the ultrasound while the doctors spoke with us.
David took out the list of questions that I had written for the week and started asking the doctors the questions. He initially asked what the neonatologist would know right after Zoe was born. The doctor assured us that he or his partner and a team would be there when she was born and that they would assess her vitals and give her oxygen if needed. He said that oxygen would be given to even a normal baby. A more aggressive measure would occur if Zoe could not breathe on her own. At that point, the decision would be made as to whether or not she would receive a ventilator. A lot of the decisions seem to be related to what week Zoe is born and obviously if she is born alive. A baby born before 24 weeks has little chance of surviving even if the odds are stacked in their favor. A normal baby born at 28 weeks has slightly increased odds of surviving. And a normal baby born at 32 weeks typically survives. Obviously, our desire is that Zoe would make it to full-term but a lot of our decisions will likely rest on whether or not she makes it past the 32 week threshold. It was nice to feel that Dr. Kundenricht did not need for us to make all of our decisions about Zoe at this time though it would be good to have a general idea of what we will and will not do. Dr. Kundenricht explained that no infant surgeries are performed at Ball Memorial Hospital and that even if Zoe had a severe heart condition, Riley Children’s Hospital in Indy would wait until she was 6-8 weeks old before performing the surgery. He said that they would want to make sure that she could sustain life on her own before performing such a critical surgery.
We also spoke with Dr. Landwehr about the possibility of a cesarean if Zoe is in distress. I told him that I have been having horrible thoughts of her umbilical cord wrapping around her neck and that being a reason she is in distress…not anything to do with the Trisomy 13. Dr. Landwehr has been hesitant to do a cesarean because of the possible complications for me and knowing that the odds of Zoe surviving are so low. However, because Dr. Landwehr has developed a relationship with us and because he has begun to wonder if Trisomy 13 babies do so poorly because they are not given much of a chance from the beginning, he has started to rethink his openness to helping out in that way. Dr. Landwehr now says that he will do whatever we desire. He understands that being given the gift of having any amount of time with our baby while she is alive would be invaluable and allow for more healing than being handed a baby that died in delivery. Though we do not know the conclusions we will come to, I am grateful that Dr. Landwehr is looking at other aspects of our well-being.
After talking with the doctors, Dr. Landwehr asked if he could take another look at Zoe. We were looking primarily at her heart defect and at the water on her brain so that Dr. Kundenricht could see some of the conditions he will be up against when Zoe is born. When Dr. Landwehr examined Zoe’s brain he noticed that it looked much different than it did two weeks ago. The water which was a major concern had basically all drained from Zoe’s brain. Dr. Landwehr took measurements and stated that Zoe’s brain mass is right where it should be right now. Dr. Landwehr said “I have never seen that happen before”. We are not sure if he was talking about with a Trisomy 13 baby or with any baby, but we will take that as a sign that God has his hand on Zoe. I also know that God answered my prayer that we would see a specific sign that Zoe had improved since the last ultrasound. I asked if Trisomy 13 babies have mental deficiency as a result of having Trisomy 13 or because their brain is structurally incorrect. They both said that is a good question and after thinking about it stated that they felt it would be due to brain abnormalities. Zoe’s brain at this time seems to be structurally correct which is very uncommon for Trisomy 13 babies. Nonetheless we will not know if the “wiring” is correct until after she is born.
Dr. Landwehr then looked at Zoe’s heart. One of the chambers still appeared to be collapsed which he guesses is due to a ventricle that is not functioning appropriately. However, Zoe also seems to have a ventricular septal defect (VSD) which is actually allowing her heart to compensate and oxygenate some before flowing out to the rest of the body. They do not know how this will manifest once Zoe is cut off from the support of my body, but they did say that many people are able to survive at 80% oxygen levels.
Dr. Landwehr and Dr. Kundenricht see no reason that I would be delivering Zoe anytime soon because her vitals seems to be strong at this time. David and I felt relieved after today’s appointment. Especially the news on the condition of her brain seemed to be very positive in our eyes. We were grateful to be leaving encouraged instead of discouraged. David and I both left with the feeling that Zoe will be born alive and that we will be able to experience her life for at least a period of time outside of my body.
David and I arrived at the hospital right on time (11:15). We saw the ultrasound tech coming out of the snack shop when we stepped in the door therefore I was certain that she wasn’t working on anyone else at the time. When we walked into the office, Dr. Landwehr was talking to another man who we later found out was the neonatologist, Dr. Kundenricht. They seemed to be relaxed and actually waiting for us…a change from the other appointments. We found out that one of the nurses told Dr. Kundenricht, “I dare you not to show up.” He must have taken her seriously.
Becky took us into the ultrasound room and immediately started looking at Zoe. She was wiggling just a little and her heartbeat was 158bpm, which continues to be strong. Becky took time looking for Zoe’s right hand which she never got a good picture of and therefore we are to assume that it still has 6 fingers like we had originally seen. She got a good picture of Zoe’s feet and toes. Though there still seem to be 5 toes on each foot, she thought that her feet appear a little stubby.
Dr. Landwehr and Dr. Kundenricht came into the exam room about 15 minutes after Becky had started the ultrasound. They started talking to David and me and looked at the ultrasound screen a little but it seemed that their biggest concern was talking to us at that time. I was starting to get slightly light-headed lying on my back so Becky stopped the ultrasound while the doctors spoke with us.
David took out the list of questions that I had written for the week and started asking the doctors the questions. He initially asked what the neonatologist would know right after Zoe was born. The doctor assured us that he or his partner and a team would be there when she was born and that they would assess her vitals and give her oxygen if needed. He said that oxygen would be given to even a normal baby. A more aggressive measure would occur if Zoe could not breathe on her own. At that point, the decision would be made as to whether or not she would receive a ventilator. A lot of the decisions seem to be related to what week Zoe is born and obviously if she is born alive. A baby born before 24 weeks has little chance of surviving even if the odds are stacked in their favor. A normal baby born at 28 weeks has slightly increased odds of surviving. And a normal baby born at 32 weeks typically survives. Obviously, our desire is that Zoe would make it to full-term but a lot of our decisions will likely rest on whether or not she makes it past the 32 week threshold. It was nice to feel that Dr. Kundenricht did not need for us to make all of our decisions about Zoe at this time though it would be good to have a general idea of what we will and will not do. Dr. Kundenricht explained that no infant surgeries are performed at Ball Memorial Hospital and that even if Zoe had a severe heart condition, Riley Children’s Hospital in Indy would wait until she was 6-8 weeks old before performing the surgery. He said that they would want to make sure that she could sustain life on her own before performing such a critical surgery.
We also spoke with Dr. Landwehr about the possibility of a cesarean if Zoe is in distress. I told him that I have been having horrible thoughts of her umbilical cord wrapping around her neck and that being a reason she is in distress…not anything to do with the Trisomy 13. Dr. Landwehr has been hesitant to do a cesarean because of the possible complications for me and knowing that the odds of Zoe surviving are so low. However, because Dr. Landwehr has developed a relationship with us and because he has begun to wonder if Trisomy 13 babies do so poorly because they are not given much of a chance from the beginning, he has started to rethink his openness to helping out in that way. Dr. Landwehr now says that he will do whatever we desire. He understands that being given the gift of having any amount of time with our baby while she is alive would be invaluable and allow for more healing than being handed a baby that died in delivery. Though we do not know the conclusions we will come to, I am grateful that Dr. Landwehr is looking at other aspects of our well-being.
After talking with the doctors, Dr. Landwehr asked if he could take another look at Zoe. We were looking primarily at her heart defect and at the water on her brain so that Dr. Kundenricht could see some of the conditions he will be up against when Zoe is born. When Dr. Landwehr examined Zoe’s brain he noticed that it looked much different than it did two weeks ago. The water which was a major concern had basically all drained from Zoe’s brain. Dr. Landwehr took measurements and stated that Zoe’s brain mass is right where it should be right now. Dr. Landwehr said “I have never seen that happen before”. We are not sure if he was talking about with a Trisomy 13 baby or with any baby, but we will take that as a sign that God has his hand on Zoe. I also know that God answered my prayer that we would see a specific sign that Zoe had improved since the last ultrasound. I asked if Trisomy 13 babies have mental deficiency as a result of having Trisomy 13 or because their brain is structurally incorrect. They both said that is a good question and after thinking about it stated that they felt it would be due to brain abnormalities. Zoe’s brain at this time seems to be structurally correct which is very uncommon for Trisomy 13 babies. Nonetheless we will not know if the “wiring” is correct until after she is born.
Dr. Landwehr then looked at Zoe’s heart. One of the chambers still appeared to be collapsed which he guesses is due to a ventricle that is not functioning appropriately. However, Zoe also seems to have a ventricular septal defect (VSD) which is actually allowing her heart to compensate and oxygenate some before flowing out to the rest of the body. They do not know how this will manifest once Zoe is cut off from the support of my body, but they did say that many people are able to survive at 80% oxygen levels.
Dr. Landwehr and Dr. Kundenricht see no reason that I would be delivering Zoe anytime soon because her vitals seems to be strong at this time. David and I felt relieved after today’s appointment. Especially the news on the condition of her brain seemed to be very positive in our eyes. We were grateful to be leaving encouraged instead of discouraged. David and I both left with the feeling that Zoe will be born alive and that we will be able to experience her life for at least a period of time outside of my body.
Tuesday, June 21, 2005
The Living Room (6-21-05)…
Our service tonight was “Ministry to Jesus” again, which is a time of worshipping God individually in a group setting. I was feeling slightly less vulnerable and thought that I might get through the evening being a little less emotional. I spent the majority of the evening reading the psalms in front of the altar that we had created with a big wooden cross, some tables and a bunch of white tea light candles. At one point, I just sat there staring at the cross which was slightly lit by the candles. My mind flashed to the story of Abraham who was asked by God to bring his long awaited son Isaac to be sacrificed. At that moment I felt like I was both Abraham and Isaac laying myself before the altar wondering what God would do next…
Monday, June 20, 2005
Doing somersaults (6-20-05)…
Zoe has been moving so much this afternoon and evening. It has felt like she has been doing flips in my tummy. I hope she is having fun in there. She was moving during an entire session this afternoon. I wanted to put my hand on my stomach and just enjoy the feeling but I thought it might be distracting so I opted not to. She continued to move a lot when David and I were getting ready for bed. He placed his hand on my stomach and was able to feel her strongly 5 or 6 times. At one point he said, “wow, was that really her?” We wonder how she seems so strong when she is supposed to be dying. We spoke to her a lot tonight, telling her how much we love her and how wonderful she is. When David prayed for us this evening, he thanked God for her strength and for having another day with her. We thought about how nice it felt to be happy about her life.
Sunday, June 19, 2005
Father’s Day (6-19-05)…
David woke up with a pit in his stomach this morning. He really didn’t want to fulfill his responsibilities at church today, especially the ones that included being in front of people. When he was done, David asked if he did a good job faking it and said that it was really exhausting for him. David did not sing much during service. He said that even though he knows that all of the words are true, he just wasn’t feeling them today. In the middle of the sermon he asked if he could ask me a really intense possibly inappropriate question. David asked if Zoe died in the next couple of months and I gave birth to her, would it be okay for us to still hold her. I told him, “Of course”. I have thought about the same thing. I know that even if she is dead when I deliver her, I will want to hold her and take pictures of her and just look at her.
Church was actually not too bad for me today. Part of that could be because I zoned out during some of the service. I saw three women whom I had not seen since receiving the news on Zoe. They all asked if they could give me a hug. I actually did okay until the last one when I started tearing up. The lady said that if there was anything she could do she would and that she just felt so helpless, knowing that all she could do was pray. I told her that praying was the best thing for us right now.
David and I left church as soon as possible in order to meet my parents at our house for lunch. David and I had decided to make salmon on the grill for the Father’s day meal. It was nice having my parents here. We talked just a little about Zoe. Mom wondered why we were having ultrasounds every week and if that seemed to make things harder for me. I have mixed feelings about it. I know that the ultrasounds were offered to us on a weekly basis for our peace of mind so that we could see Zoe and see how she is doing on a regular basis. There is also this feeling that each time we have the ultrasounds, we find out what else is wrong with her and many times that ends up feelings defeating and depressing. On the other hand, it is good to see Zoe and to connect with her in that way. I just don’t know what is best. David is sure that if things are going downhill for Zoe, that I will be able to sense it because he believes that I am perceptive in that way. I, however, think that sometimes I can convince myself that things are just getting worse and I think of scenarios worse than reality.
My parents left early in the afternoon because they needed to get back to Ohio to eat pizza with my mom’s dad and her siblings for Father’s day. David left for a couple of hours to take a Father’s Day walk with his brother and dad. I took a nap until David returned. David and I had decided after my bad day yesterday that we would skip small group tonight and just have an evening alone. I think that this was a good idea and allowed David and I to just relax and breathe before the work week.
I am sure that my horribly emotional day yesterday had an effect on David’s emotional state for today. He admitted that he did affect him a little but that he doesn’t want me to hide what I am going through. David did bring up (for more than the first time) that he felt it might be a good idea for me to “talk to someone”. Ironically, even though I am a counselor, I usually get defensive when he brings this up. This time I didn’t. Seeing as how our situation is not a common one for a person to go through, I know that it could be beneficial to talk with a counselor. I told him that I did have a slight fear that whoever I go to may say, “I have no idea what to tell you”, but nonetheless I am open to the idea. David suggested that I go to a therapist that he went to see in Fort Wayne about 2 years ago. I told him that I would think about it and asked him to check on possible insurance coverage. David said that even if we didn’t have coverage, he would find a way to foot the bill. We chuckled since we have always shared money and basically what he was trying to say was that he just felt that having someone to talk to was important enough not to be concerned about the cost.
Church was actually not too bad for me today. Part of that could be because I zoned out during some of the service. I saw three women whom I had not seen since receiving the news on Zoe. They all asked if they could give me a hug. I actually did okay until the last one when I started tearing up. The lady said that if there was anything she could do she would and that she just felt so helpless, knowing that all she could do was pray. I told her that praying was the best thing for us right now.
David and I left church as soon as possible in order to meet my parents at our house for lunch. David and I had decided to make salmon on the grill for the Father’s day meal. It was nice having my parents here. We talked just a little about Zoe. Mom wondered why we were having ultrasounds every week and if that seemed to make things harder for me. I have mixed feelings about it. I know that the ultrasounds were offered to us on a weekly basis for our peace of mind so that we could see Zoe and see how she is doing on a regular basis. There is also this feeling that each time we have the ultrasounds, we find out what else is wrong with her and many times that ends up feelings defeating and depressing. On the other hand, it is good to see Zoe and to connect with her in that way. I just don’t know what is best. David is sure that if things are going downhill for Zoe, that I will be able to sense it because he believes that I am perceptive in that way. I, however, think that sometimes I can convince myself that things are just getting worse and I think of scenarios worse than reality.
My parents left early in the afternoon because they needed to get back to Ohio to eat pizza with my mom’s dad and her siblings for Father’s day. David left for a couple of hours to take a Father’s Day walk with his brother and dad. I took a nap until David returned. David and I had decided after my bad day yesterday that we would skip small group tonight and just have an evening alone. I think that this was a good idea and allowed David and I to just relax and breathe before the work week.
I am sure that my horribly emotional day yesterday had an effect on David’s emotional state for today. He admitted that he did affect him a little but that he doesn’t want me to hide what I am going through. David did bring up (for more than the first time) that he felt it might be a good idea for me to “talk to someone”. Ironically, even though I am a counselor, I usually get defensive when he brings this up. This time I didn’t. Seeing as how our situation is not a common one for a person to go through, I know that it could be beneficial to talk with a counselor. I told him that I did have a slight fear that whoever I go to may say, “I have no idea what to tell you”, but nonetheless I am open to the idea. David suggested that I go to a therapist that he went to see in Fort Wayne about 2 years ago. I told him that I would think about it and asked him to check on possible insurance coverage. David said that even if we didn’t have coverage, he would find a way to foot the bill. We chuckled since we have always shared money and basically what he was trying to say was that he just felt that having someone to talk to was important enough not to be concerned about the cost.
Saturday, June 18, 2005
An Emotional Day (6-18-05)…
Being a Saturday, I hoped to be able to sleep in and I was surprisingly able to accomplish this. David left earlier and kissed me on the cheek and forehead before he left. He always does that if he leaves before I am awake and it always means a lot to me. David was going to New Castle with Danny for the day to play basketball with friends that he ran cross country with at Taylor. Apparently, the New Castle HS gym is the largest high school gym in the country and the guys thought it would be cool to play basketball there.
Though many of the wives were going to be watching and there was going to be a pizza party following the basketball, I had decided earlier in the week that I wouldn’t be going with David. He agreed that it would be a good idea for me to stay back and just have some time to myself. I also felt uncomfortable knowing that the majority of the people at the event had no idea what is going on with David, Zoe, and I and I did not have any desire to explain the situation more than necessary. Later, I found out how good of an idea it really was for me to stay back. There were eight guys playing ball and four of their wives are pregnant. I have been in enough situations to know that when women are pregnant, the conversations generally revolved around pregnancy. It would have been just too much for me to handle.
Nonetheless, staying at home did not produce a happy day for me. I cried a good part of the day and felt pretty lonely and confused. The day started out by waking up a little later than normal. I decided that one of the first things I wanted to do was exercise on my elliptical machine. About halfway into my workout 2 things happened…first, Nichole and the kids left to meet up with Danny. I thought that would be a good thing and give me sometime to myself. However, the second thing that happened was getting a phone call from the Briarwood clinic that a client had paged the on-call therapist and needed to talk with me. I hesitantly called the client and ended up spending almost an hour on the phone. The call put me over the edge. I did not have additional emotional energy to spend and I felt immediately depleted and frustrated. I angrily said, “God, I just didn’t need that.” I resumed my workout thinking that maybe I could work out some of my angst. This typically works fairly well for me but today it really had no effect. I usually get my mind set on my day going the way I had planned and it just wasn’t happening that way. Additionally, I was feeling slightly guilty for not going with David even though he was supportive of me staying home. The irrational thoughts were just flooding in. I felt like less than a person and so confused on what my role in society is right now. I think about Zoe so much and the situation makes me feel so strange around others.
After finishing my workout, I went upstairs to eat and crawled into my unmade bed and sat there mindlessly playing computer games and watching Tv until David came home in the early evening. I talked to him a couple of times on the telephone and just bawled. I know that I sounded so pitiful. I felt so pitiful as well. David was trying to figure out if I wanted him to come home or if I wanted more time by myself to redeem my day and get a couple of things done. I really didn’t know what to tell him but I knew that it wasn’t absolutely necessary for him to come home. I just didn’t know if it would do any good to have anyone else in the house with me. David called me back an hour later and said that he was on his way home. He said that he had no expectations for me once he got home. David wanted to spend time reading and listening to music, which he has recently discovered are ways for him to connect with God during this time. He said he had no problem sitting in another room doing those things while I did whatever I wanted. David also said that he would be happy to take a walk or ride bikes with me if I thought that might help. I thought that might be a good idea and maybe the only thing that was going to get me back out of bed.
David arrived home about 45 minutes later and since his legs were actually pretty tired from playing basketball all morning, we decided to take a bike ride. I was fairly quiet and probably looked pretty pathetic, having lain in bed most of the day. David doesn’t care however; he has done really well accepting me where I am at. So we took about a 5 mile bike ride through some of the neighborhoods around ours.
I was a little irritable during the ride. At one point, David tried to make a sarcastic joke and I didn’t laugh at all. I told him that I just don’t feel like I have a backbone today. I talked about feeling hopeless lately that Zoe will be healed. I have been focusing more on the thought that she is just not going to make it and that has been really draining on me. David mentioned that he had been having more of those types of thoughts this week as well. We talked about how slow time seems to pass these days and how many different emotions we seem to go through in a week. Though still emotional, taking a bike ride was good. It was nice to be outside and be a part of the world.
When we returned home, I asked David if he would take a 30 minute drive with me to pick up a gift for my dad for his birthday. My parents were coming tomorrow to eat lunch with us for Father’s Day and I had been feeling guilty that I hadn’t been able to think of a gift for my dad for his birthday, which was 4 days ago. It took until this evening to figure out a good gift but it required a drive to the Anderson Starbucks. David didn’t mind. He was able to take along some new music he had borrowed from friends and listen to it on the drive.
We finally returned home at about 8:00pm. I spent a little time journaling while David listened to more music and read. It at least felt a little better to have gotten my dad’s gift and to be journaling. Before going to bed, I asked David if I could give him something that I had bought for him for Father’s Day. Earlier in the week, I found a framed picture of an eagle and a ram on a mountain with Isaiah 40:31- Those who wait on the Lord shall renew their strength; they shall mount on wings like eagles; they will run and not grow weary; they will walk and not be faint. I explained that when I saw this, it reminded me of a study I was doing after finding out that we were pregnant with Zoe. Since we began trying to get pregnant, I felt that waiting was a theme in our lives. I began studying different passages on waiting on the Lord and this is one of the verses that I came across. I told David that I would like for the picture to remind him of me and of Zoe, whom we have waited for so long. Obviously, I cried when I explained the thoughts behind the gift. David said that he loved the picture and I knew that he was sincere.
David prayed for Zoe and me before we fell asleep (just like he has every night over the past several weeks). The last thing I recalled whimpering before falling asleep was “I hope tomorrow is better than today.”
Though many of the wives were going to be watching and there was going to be a pizza party following the basketball, I had decided earlier in the week that I wouldn’t be going with David. He agreed that it would be a good idea for me to stay back and just have some time to myself. I also felt uncomfortable knowing that the majority of the people at the event had no idea what is going on with David, Zoe, and I and I did not have any desire to explain the situation more than necessary. Later, I found out how good of an idea it really was for me to stay back. There were eight guys playing ball and four of their wives are pregnant. I have been in enough situations to know that when women are pregnant, the conversations generally revolved around pregnancy. It would have been just too much for me to handle.
Nonetheless, staying at home did not produce a happy day for me. I cried a good part of the day and felt pretty lonely and confused. The day started out by waking up a little later than normal. I decided that one of the first things I wanted to do was exercise on my elliptical machine. About halfway into my workout 2 things happened…first, Nichole and the kids left to meet up with Danny. I thought that would be a good thing and give me sometime to myself. However, the second thing that happened was getting a phone call from the Briarwood clinic that a client had paged the on-call therapist and needed to talk with me. I hesitantly called the client and ended up spending almost an hour on the phone. The call put me over the edge. I did not have additional emotional energy to spend and I felt immediately depleted and frustrated. I angrily said, “God, I just didn’t need that.” I resumed my workout thinking that maybe I could work out some of my angst. This typically works fairly well for me but today it really had no effect. I usually get my mind set on my day going the way I had planned and it just wasn’t happening that way. Additionally, I was feeling slightly guilty for not going with David even though he was supportive of me staying home. The irrational thoughts were just flooding in. I felt like less than a person and so confused on what my role in society is right now. I think about Zoe so much and the situation makes me feel so strange around others.
After finishing my workout, I went upstairs to eat and crawled into my unmade bed and sat there mindlessly playing computer games and watching Tv until David came home in the early evening. I talked to him a couple of times on the telephone and just bawled. I know that I sounded so pitiful. I felt so pitiful as well. David was trying to figure out if I wanted him to come home or if I wanted more time by myself to redeem my day and get a couple of things done. I really didn’t know what to tell him but I knew that it wasn’t absolutely necessary for him to come home. I just didn’t know if it would do any good to have anyone else in the house with me. David called me back an hour later and said that he was on his way home. He said that he had no expectations for me once he got home. David wanted to spend time reading and listening to music, which he has recently discovered are ways for him to connect with God during this time. He said he had no problem sitting in another room doing those things while I did whatever I wanted. David also said that he would be happy to take a walk or ride bikes with me if I thought that might help. I thought that might be a good idea and maybe the only thing that was going to get me back out of bed.
David arrived home about 45 minutes later and since his legs were actually pretty tired from playing basketball all morning, we decided to take a bike ride. I was fairly quiet and probably looked pretty pathetic, having lain in bed most of the day. David doesn’t care however; he has done really well accepting me where I am at. So we took about a 5 mile bike ride through some of the neighborhoods around ours.
I was a little irritable during the ride. At one point, David tried to make a sarcastic joke and I didn’t laugh at all. I told him that I just don’t feel like I have a backbone today. I talked about feeling hopeless lately that Zoe will be healed. I have been focusing more on the thought that she is just not going to make it and that has been really draining on me. David mentioned that he had been having more of those types of thoughts this week as well. We talked about how slow time seems to pass these days and how many different emotions we seem to go through in a week. Though still emotional, taking a bike ride was good. It was nice to be outside and be a part of the world.
When we returned home, I asked David if he would take a 30 minute drive with me to pick up a gift for my dad for his birthday. My parents were coming tomorrow to eat lunch with us for Father’s Day and I had been feeling guilty that I hadn’t been able to think of a gift for my dad for his birthday, which was 4 days ago. It took until this evening to figure out a good gift but it required a drive to the Anderson Starbucks. David didn’t mind. He was able to take along some new music he had borrowed from friends and listen to it on the drive.
We finally returned home at about 8:00pm. I spent a little time journaling while David listened to more music and read. It at least felt a little better to have gotten my dad’s gift and to be journaling. Before going to bed, I asked David if I could give him something that I had bought for him for Father’s Day. Earlier in the week, I found a framed picture of an eagle and a ram on a mountain with Isaiah 40:31- Those who wait on the Lord shall renew their strength; they shall mount on wings like eagles; they will run and not grow weary; they will walk and not be faint. I explained that when I saw this, it reminded me of a study I was doing after finding out that we were pregnant with Zoe. Since we began trying to get pregnant, I felt that waiting was a theme in our lives. I began studying different passages on waiting on the Lord and this is one of the verses that I came across. I told David that I would like for the picture to remind him of me and of Zoe, whom we have waited for so long. Obviously, I cried when I explained the thoughts behind the gift. David said that he loved the picture and I knew that he was sincere.
David prayed for Zoe and me before we fell asleep (just like he has every night over the past several weeks). The last thing I recalled whimpering before falling asleep was “I hope tomorrow is better than today.”
Thursday, June 16, 2005
Coming out of our shell (6-16-05)…
David and I made arrangements to get together with 2 other couples tonight (Jeff and Sarah McLaughlin and Tim and Karen Daugherty). Both couples have been very concerned about us and have kept in close contact through phone calls or emails. We decided to get together for supper at Tim and Karen’s house. Karen had asked earlier if I had any recent ultrasound pictures of Zoe. She said that she would like to see them if I did so I decided to go ahead and bring them with us to their house. David said that he didn’t mind but also expressed that he did not want to talk about the situation with Zoe the entire night.
We arrived at Tim and Karen’s house at about 6:35, just a few minutes after Jeff and Sarah arrived. I went in and sat on a kitchen stool with Sarah while Tim and Karen finished up the chicken enchiladas. It was fairly comfortable from the beginning since we were just having small talk. Since it seemed that supper was still going to be a few minutes, I asked if they wanted to see the ultrasound pictures before supper. I figured that this would give us just a few minutes…a limited amount of time…and then we could get to supper.
Sarah sat on one side and Karen sat on the other. Their husbands sat beside them and David was actually off returning a couple of phone calls. That was probably as good of a time as any for him to make the calls so that he didn’t have to go through it all again. I brought all of the ultrasound pictures taken since we originally found out we were pregnant. I have quite a collection already and I am sure that it will only grow in the next several weeks. We started from the beginning and I pointed out Zoe’s different recognizable body parts. We eventually got to the pictures taken on 5/16/05. I told them that they were taken on D-day. I skipped over the picture that identified the 6 fingers on Zoe’s right hand but pointed out the membrane that was collapsing around Zoe that caused Dr. Landwehr to think that her kidneys may not be functioning normally. Fortunately, the membrane has now reattached and seems to be fine. We then proceeded through the rest of the pictures.
Sarah asked if the doctors have been able to tell whether or not Zoe will be strong enough to survive. I told her that it is almost impossible for them to be able to tell. Many times the babies that look outwardly deformed are the ones that survive and the ones that look fairly normal are the ones that don’t. Because they were asking some specific questions, I decided to tell them about the specific concerns that have been discovered about Zoe, such as the sixth finger on her right hand, no nasal bone, water on her brain, and the collapsed forth chamber in her heart. I started to cry like I usually do when I talk about her heart and brain. I expressed that these are not good signs in regards to her chance of survival. Karen said that Zoe is adorable and that she cannot wait to meet her. She said that she is praying for a miracle.
We arrived at Tim and Karen’s house at about 6:35, just a few minutes after Jeff and Sarah arrived. I went in and sat on a kitchen stool with Sarah while Tim and Karen finished up the chicken enchiladas. It was fairly comfortable from the beginning since we were just having small talk. Since it seemed that supper was still going to be a few minutes, I asked if they wanted to see the ultrasound pictures before supper. I figured that this would give us just a few minutes…a limited amount of time…and then we could get to supper.
Sarah sat on one side and Karen sat on the other. Their husbands sat beside them and David was actually off returning a couple of phone calls. That was probably as good of a time as any for him to make the calls so that he didn’t have to go through it all again. I brought all of the ultrasound pictures taken since we originally found out we were pregnant. I have quite a collection already and I am sure that it will only grow in the next several weeks. We started from the beginning and I pointed out Zoe’s different recognizable body parts. We eventually got to the pictures taken on 5/16/05. I told them that they were taken on D-day. I skipped over the picture that identified the 6 fingers on Zoe’s right hand but pointed out the membrane that was collapsing around Zoe that caused Dr. Landwehr to think that her kidneys may not be functioning normally. Fortunately, the membrane has now reattached and seems to be fine. We then proceeded through the rest of the pictures.
Sarah asked if the doctors have been able to tell whether or not Zoe will be strong enough to survive. I told her that it is almost impossible for them to be able to tell. Many times the babies that look outwardly deformed are the ones that survive and the ones that look fairly normal are the ones that don’t. Because they were asking some specific questions, I decided to tell them about the specific concerns that have been discovered about Zoe, such as the sixth finger on her right hand, no nasal bone, water on her brain, and the collapsed forth chamber in her heart. I started to cry like I usually do when I talk about her heart and brain. I expressed that these are not good signs in regards to her chance of survival. Karen said that Zoe is adorable and that she cannot wait to meet her. She said that she is praying for a miracle.
Wednesday, June 15, 2005
Forgetfulness (6-15-05)…
While David and I were taking a walk tonight, I received a phone message from my dad. We had talked about them coming to Muncie on Sunday to grab lunch for Father’s Day and they were calling to confirm the plans. As soon as I heard the message I became teary eyed realizing that I had forgotten to call my dad yesterday to wish him a Happy Birthday. This is not like me to forget important events. My mind has been so preoccupied lately and I guess I am just surviving. I called my dad to wish him a happy birthday and apologized for not calling yesterday. I think he understood.
A strange interaction (6-15-05)…
A lady came into my office today and said that she had heard that I was having difficulty with my pregnancy. She asked what was wrong and asked about some specifics of Zoe’s disorder. She seemed to be feeling compassion for what was happening in my life but then proceeded to tell me about how she had had a miscarriage and how difficult it was to know that she wasn’t going to be able to keep her baby. After saying that and not getting much of a response from me, she proceeded to pull out pictures of her new granddaughter that her teenage daughter had recently delivered. I looked at the pictures but couldn’t help but think, “what in the world!” Though it feels cynical, first I can’t help but think that what I am going through is so much different than a miscarriage. Secondly, did she really just show me pictures of her teenage daughter’s new baby?
Tuesday, June 14, 2005
Buying a changing table (6-14-05)…
Ever since finding out that I am pregnant, I have been looking for the perfect dresser/changing table for our baby…something inexpensive but practical. After we were given the Trisomy 13 diagnosis, all of my thoughts about the nursery became even more complicated and cloudy. Do I put together a nursery? When would I start? What if she dies before even getting to come home? A nursery was something that I had been excited about and now every thought about it is stressful. Last week, I wandered into a used furniture shop and found a cute dresser/changing table. I didn’t know what to do…should I prepare for life or death? Since I only work downtown on Tuesdays, I decided to just hold off on the decision for another week. So today, I went back into the store and saw a dresser/changing table that was less expensive and more practical. I left the store and labored over the decision…something that should not be so complicated. I called David and tearfully tried to talk through the decision with him. He assured me that it was not a silly idea to buy the changing table even if we don’t know what will happen with Zoe. David offered to pick up the dresser for me later in the afternoon. I feel relieved that the decision is made and that I can at least put that one to rest.
Email Update to Friends
6-14-05 (email to friends)
Thanks again for your prayers. I want you to know that I am feeling them. Though our situation remains very uncertain, I feel strengthened each day. This week has been easier than last week so far. I think about Zoe all of the time and though I ache for her, I am grateful for her and I am grateful that she is the one that I have the opportunity to bond with. She continues to move very often and I am feeling her stronger than before.
Yesterday, I had two sessions with clients whom I have not seen since receiving the news about Zoe's condition. They both asked how I was doing (because they knew that sessions had been cancelled due to pregnancy complications). I told them the brief version and interestingly, they both realized that they were part of groups that have already been praying for us. I am grateful to be surrounded by so many people who are interceding especially during a time when it is difficult for us to know what to pray for ourselves.
We do not have an appointment with Dr. Landwehr tomorrow because they are out of the office. We could have scheduled for another day this week but opted to wait until next Wednesday when we are also to have a definite appointment set with the Neo-natalogist as well. Hearing difficult news about Zoe each week is tough and draining and it will be a relief to be able to focus more on her life instead of her abnormalities for a brief time.
Thanks again for everything.
Christina
Thanks again for your prayers. I want you to know that I am feeling them. Though our situation remains very uncertain, I feel strengthened each day. This week has been easier than last week so far. I think about Zoe all of the time and though I ache for her, I am grateful for her and I am grateful that she is the one that I have the opportunity to bond with. She continues to move very often and I am feeling her stronger than before.
Yesterday, I had two sessions with clients whom I have not seen since receiving the news about Zoe's condition. They both asked how I was doing (because they knew that sessions had been cancelled due to pregnancy complications). I told them the brief version and interestingly, they both realized that they were part of groups that have already been praying for us. I am grateful to be surrounded by so many people who are interceding especially during a time when it is difficult for us to know what to pray for ourselves.
We do not have an appointment with Dr. Landwehr tomorrow because they are out of the office. We could have scheduled for another day this week but opted to wait until next Wednesday when we are also to have a definite appointment set with the Neo-natalogist as well. Hearing difficult news about Zoe each week is tough and draining and it will be a relief to be able to focus more on her life instead of her abnormalities for a brief time.
Thanks again for everything.
Christina
Monday, June 13, 2005
People are Praying
2 Thessalonians 1:6-7 (June 13, 2005)…
I spent some time reading scripture today, which is definitely something that has been fairly difficult for me over the past month. I took some comfort in 2 Thessalonians 1:6-7 which states: “God is just: He will pay back trouble to those who trouble you and give relief to you who are troubled, and to us as well. This will happen when the Lord Jesus is revealed from heaven in blazing fire with his powerful angels.” God sees my turmoil and He will bring relief from that trouble. The verse does not say that the relief will come during my earthly life, yet I do find myself hoping that the relief will come soon.
People are praying (June 13, 2005)…
I saw two clients at work today that I have not seen since returning from vacation and hence I have not seen them since receiving the news on Zoe. The first client asked how I was doing and I answered with my standard response which is “I am physically okay but my baby is really sick.” She told me that when she received the cancellation call from my office, she called her pastor to ask if the church could pray for her counselor, Christina, who is having complications with her pregnancy. Her pastor told her that he had already received a call about me and that they were already praying for us.
The second client also asked how I was doing and I also told her the standard. Because she asked a few specific questions, I decided to give her a little more information on Zoe’s condition. At the end of the session, the client asked if I was a part of Jennifer Stanley’s small group. I told her “yes” and she said that she and a group of ladies have been praying for me every week. It is comforting to know that so many people throughout the community are praying for us and for our little Zoe.
I spent some time reading scripture today, which is definitely something that has been fairly difficult for me over the past month. I took some comfort in 2 Thessalonians 1:6-7 which states: “God is just: He will pay back trouble to those who trouble you and give relief to you who are troubled, and to us as well. This will happen when the Lord Jesus is revealed from heaven in blazing fire with his powerful angels.” God sees my turmoil and He will bring relief from that trouble. The verse does not say that the relief will come during my earthly life, yet I do find myself hoping that the relief will come soon.
People are praying (June 13, 2005)…
I saw two clients at work today that I have not seen since returning from vacation and hence I have not seen them since receiving the news on Zoe. The first client asked how I was doing and I answered with my standard response which is “I am physically okay but my baby is really sick.” She told me that when she received the cancellation call from my office, she called her pastor to ask if the church could pray for her counselor, Christina, who is having complications with her pregnancy. Her pastor told her that he had already received a call about me and that they were already praying for us.
The second client also asked how I was doing and I also told her the standard. Because she asked a few specific questions, I decided to give her a little more information on Zoe’s condition. At the end of the session, the client asked if I was a part of Jennifer Stanley’s small group. I told her “yes” and she said that she and a group of ladies have been praying for me every week. It is comforting to know that so many people throughout the community are praying for us and for our little Zoe.
Friday, June 10, 2005
Email Update to Friends
6-10-05 (email to friends)…
Thank you all again for your thoughts, prayers, and words to let us know you were thinking of us this week.
As far as work goes, it was not as difficult as I had anticipated though some days just seemed to be more emotional than others. Nonetheless, God provided me with the strength to make it through.
We had another ultrasound on Wednesday. It was good to see Zoe and to know that her heart is still beating strong. She was moving around a lot before the ultrasound and during so her heartrate was at 160 bpm. We did find out that there are concerns about the structure of her heart and things associated with her brain. She looks beautiful though and she seems to enjoy sucking on her thumb.
We went to the genetic counselor on Thursday. This appointment as well as the ultrasound were both the type of thing that you leave from not knowing what to feel. We did find out that there may be more of a chance that we could conceive a healthy child however there is risk involved. Seeing as how we are in the less than 1% that conceive a baby with Trisomy 13, knowing that there is a risk is scary and we are not sure how to react. We are still processing what we have learned.
Thank you again for everything. We continue to be grateful for friends like you who are holding us up in so many different ways. Thank you.
Christina
Thank you all again for your thoughts, prayers, and words to let us know you were thinking of us this week.
As far as work goes, it was not as difficult as I had anticipated though some days just seemed to be more emotional than others. Nonetheless, God provided me with the strength to make it through.
We had another ultrasound on Wednesday. It was good to see Zoe and to know that her heart is still beating strong. She was moving around a lot before the ultrasound and during so her heartrate was at 160 bpm. We did find out that there are concerns about the structure of her heart and things associated with her brain. She looks beautiful though and she seems to enjoy sucking on her thumb.
We went to the genetic counselor on Thursday. This appointment as well as the ultrasound were both the type of thing that you leave from not knowing what to feel. We did find out that there may be more of a chance that we could conceive a healthy child however there is risk involved. Seeing as how we are in the less than 1% that conceive a baby with Trisomy 13, knowing that there is a risk is scary and we are not sure how to react. We are still processing what we have learned.
Thank you again for everything. We continue to be grateful for friends like you who are holding us up in so many different ways. Thank you.
Christina
Thursday, June 9, 2005
The Prayers of Others
The message from Marie Weims (6-9-05)…
David received a message from Marie Weims who organized the Kona Encounter that David and I attended in January in Hawaii…the trip where Zoe was conceived. David has received a few phone messages from Marie’s husband Gary who is the pastor of The International House of Prayer in Kansas City. David has tried to return phone calls to Gary but they have only played phone tag at this point. Marie’s message was very sincere and David wanted me to listen to it.
On the message, Marie said that she was actually relieved that David did not answer the phone and that she was able to just leave a message. Marie wanted us to know that every night, Gary prays for us and weeps. Marie said that she feels like she is stepping way out of the boat but that she needed to say what she was feeling. Marie said that they have 1600 intercessors praying for us and even if we cannot pray, that is okay because they are carrying our burdens to God for us. Marie said that God has given her an image that an arrow is piercing my womb and that the arrow is God’s healing. She told us that she believes God is going to resurrect our daughter and that she is going to be an example of God’s healing for all to see.
After our appointment with the genetic counselor, David called Gary and finally had a chance to speak with him. Gary said that he understood if we were not able to pray for healing ourselves, but he asked that we would at least be open to the possibility. David shared with Gary the specifics from yesterday’s ultrasound so that Gary could guide people to pray for Zoe’s specific needs. Gary asked if he could pray and he prayed for Zoe over the phone while David laid his hand on my tummy.
Though I am scared to completely get my hopes up regarding the possibility of Zoe being completely restored, I do believe that God can do it and therefore I am open to God’s healing. In fact, I want it so badly. I really, really do.
David received a message from Marie Weims who organized the Kona Encounter that David and I attended in January in Hawaii…the trip where Zoe was conceived. David has received a few phone messages from Marie’s husband Gary who is the pastor of The International House of Prayer in Kansas City. David has tried to return phone calls to Gary but they have only played phone tag at this point. Marie’s message was very sincere and David wanted me to listen to it.
On the message, Marie said that she was actually relieved that David did not answer the phone and that she was able to just leave a message. Marie wanted us to know that every night, Gary prays for us and weeps. Marie said that she feels like she is stepping way out of the boat but that she needed to say what she was feeling. Marie said that they have 1600 intercessors praying for us and even if we cannot pray, that is okay because they are carrying our burdens to God for us. Marie said that God has given her an image that an arrow is piercing my womb and that the arrow is God’s healing. She told us that she believes God is going to resurrect our daughter and that she is going to be an example of God’s healing for all to see.
After our appointment with the genetic counselor, David called Gary and finally had a chance to speak with him. Gary said that he understood if we were not able to pray for healing ourselves, but he asked that we would at least be open to the possibility. David shared with Gary the specifics from yesterday’s ultrasound so that Gary could guide people to pray for Zoe’s specific needs. Gary asked if he could pray and he prayed for Zoe over the phone while David laid his hand on my tummy.
Though I am scared to completely get my hopes up regarding the possibility of Zoe being completely restored, I do believe that God can do it and therefore I am open to God’s healing. In fact, I want it so badly. I really, really do.
Meeting with the Geneticist
Meeting with the Geneticist (6-9-05)…
David and I left for the Indianapolis University Medical Center in Indy at around 8:20am. We were both feeling really tired because we had somehow managed to get another poor nights sleep last night. In many ways David and I have felt like we have been waiting for today, thinking that we will get a lot of our questions answered. Yet in many ways, we really didn’t know what to expect and what we would actually find out. We were fairly certain that it would be confirmed that David was the carrier of the translocation. David and I had assumed this since finding out the news since his dad’s twin died 3 months after birth from abnormalities that sounded very similar to what we have read on Trisomy 13.
We entered the hospital and found our way to the prenatal diagnostic center where we waited for about 30 minutes for our appointment. The room was stale and felt like the arctic. I was so cold that David took off his shirt for me to wear. Fortunately, he didn’t seem to mind sitting there in his plain white undershirt.
The genetic counselor (Kristyne Stone) entered the waiting room, called our names, and led us across the hallway to her small office where David and I attempted to get comfortable on the love sofa that was crammed into her office. Kristyne initially asked us what we had been told to this point. I talked a little about the Trisomy 13 diagnosis and that we had been told that any proceeding offspring would likely have the disorder as well. She shook her head in disagreement and started looking for results from our genetic testing. Kristyne said that our results had not been sent to her. In unison, David and I both said, “You have to be kidding.” I could feel the frustration welling up inside. Kristyne called down to the lab and asked if our results were there. She found out the preliminary results and told us that they would be faxing the results up to the office. Kristyne told us that the lab indicated that I have a balanced translocation between my 13th and 14th chromosomes, meaning that part of my 14th set of chromosomes in on the 13th spot but that in the end I still have 26 pairs. She said that David’s chromosomes were normal. This was a shock to both of us and again, I just didn’t know what to think. This was not at all what we expected.
Kristyne stepped out of the room for a while to get the fax from the lab. When she walked out David hugged me and tears came to my eyes. I composed myself before she walked back into the room to show us the results. Sure enough, even though I am “normal”, I have a balanced translocation. Conceiving a baby with Trisomy 13 only occurs 1 out of 5000 times meaning that we are in a category that less that 1% of the population is in. Only a fraction of those carry a Trisomy 13 baby beyond the first trimester. Why is it that we seem to be the rare case? Kristyne could not tell us anything new about the odds of Zoe surviving. She just quoted what we have already read in our own research.
Kristyne took out a pen and showed us the possible chromosome combinations in children that we would conceive with regards to our own genetic make-up. She diagramed 6 possible scenarios. Kristyne stated that 3 of the possibilities end in early miscarriage, often (but not always) before even knowing that you are pregnant. The fourth possibility is conceiving a child with Trisomy 13 which also typically ends in an early miscarriage but can sustain longer like Zoe. The other two possibilities would be healthy pregnancies: a normal chromosome combination and a balanced translocation like myself. Kristyne expressed this information as if it should be positive. She stated that since three possibilities generally end in early miscarriage and the possibility of having another child with Trisomy 13 is less than 1%, that would mean that our likelihood of conceiving a normal child is very high. I felt confused and wondered if I was supposed to feel good about 3 out of 6 pregnancies resulting in early miscarriage. She also confirmed that this is likely part of the reason that it took David and I almost two years to get pregnant with Zoe.
I was fairly quiet as we left the office and headed out to our car. David said, “honey, this makes no difference to me.” My emotions were much different. We were prepared to hear that it was David but to know that it’s me feels much different. Though irrational, I was now feeling that I was the cause of our 2 years of infertility and that it was my fault that our precious little Zoe has Trisomy 13. I remained very withdrawn as we drove to lunch. I expressed to David the irrational thoughts that I was having and he seemed to understand though he did not agree. David assured me that there is nothing that we could have done any different and that we were not behaving irresponsibly when we conceived Zoe.
David and I left for the Indianapolis University Medical Center in Indy at around 8:20am. We were both feeling really tired because we had somehow managed to get another poor nights sleep last night. In many ways David and I have felt like we have been waiting for today, thinking that we will get a lot of our questions answered. Yet in many ways, we really didn’t know what to expect and what we would actually find out. We were fairly certain that it would be confirmed that David was the carrier of the translocation. David and I had assumed this since finding out the news since his dad’s twin died 3 months after birth from abnormalities that sounded very similar to what we have read on Trisomy 13.
We entered the hospital and found our way to the prenatal diagnostic center where we waited for about 30 minutes for our appointment. The room was stale and felt like the arctic. I was so cold that David took off his shirt for me to wear. Fortunately, he didn’t seem to mind sitting there in his plain white undershirt.
The genetic counselor (Kristyne Stone) entered the waiting room, called our names, and led us across the hallway to her small office where David and I attempted to get comfortable on the love sofa that was crammed into her office. Kristyne initially asked us what we had been told to this point. I talked a little about the Trisomy 13 diagnosis and that we had been told that any proceeding offspring would likely have the disorder as well. She shook her head in disagreement and started looking for results from our genetic testing. Kristyne said that our results had not been sent to her. In unison, David and I both said, “You have to be kidding.” I could feel the frustration welling up inside. Kristyne called down to the lab and asked if our results were there. She found out the preliminary results and told us that they would be faxing the results up to the office. Kristyne told us that the lab indicated that I have a balanced translocation between my 13th and 14th chromosomes, meaning that part of my 14th set of chromosomes in on the 13th spot but that in the end I still have 26 pairs. She said that David’s chromosomes were normal. This was a shock to both of us and again, I just didn’t know what to think. This was not at all what we expected.
Kristyne stepped out of the room for a while to get the fax from the lab. When she walked out David hugged me and tears came to my eyes. I composed myself before she walked back into the room to show us the results. Sure enough, even though I am “normal”, I have a balanced translocation. Conceiving a baby with Trisomy 13 only occurs 1 out of 5000 times meaning that we are in a category that less that 1% of the population is in. Only a fraction of those carry a Trisomy 13 baby beyond the first trimester. Why is it that we seem to be the rare case? Kristyne could not tell us anything new about the odds of Zoe surviving. She just quoted what we have already read in our own research.
Kristyne took out a pen and showed us the possible chromosome combinations in children that we would conceive with regards to our own genetic make-up. She diagramed 6 possible scenarios. Kristyne stated that 3 of the possibilities end in early miscarriage, often (but not always) before even knowing that you are pregnant. The fourth possibility is conceiving a child with Trisomy 13 which also typically ends in an early miscarriage but can sustain longer like Zoe. The other two possibilities would be healthy pregnancies: a normal chromosome combination and a balanced translocation like myself. Kristyne expressed this information as if it should be positive. She stated that since three possibilities generally end in early miscarriage and the possibility of having another child with Trisomy 13 is less than 1%, that would mean that our likelihood of conceiving a normal child is very high. I felt confused and wondered if I was supposed to feel good about 3 out of 6 pregnancies resulting in early miscarriage. She also confirmed that this is likely part of the reason that it took David and I almost two years to get pregnant with Zoe.
I was fairly quiet as we left the office and headed out to our car. David said, “honey, this makes no difference to me.” My emotions were much different. We were prepared to hear that it was David but to know that it’s me feels much different. Though irrational, I was now feeling that I was the cause of our 2 years of infertility and that it was my fault that our precious little Zoe has Trisomy 13. I remained very withdrawn as we drove to lunch. I expressed to David the irrational thoughts that I was having and he seemed to understand though he did not agree. David assured me that there is nothing that we could have done any different and that we were not behaving irresponsibly when we conceived Zoe.
Wednesday, June 8, 2005
Our Standing Appointment
Our standing appointment (6-8-05)…
Today we had another ultrasound appointment with Dr. Landwehr. We were supposed to be meeting with a neonatalogist as well but David and I both had a feeling that meeting would not actually transpire. I was feeling slightly anxious before the appointment as I think I might feel each Wednesday morning (before our standing appointments). We were sitting in the waiting room for about 30 minutes before being called back to our room. Sitting in that waiting room was probably the last thing we wanted to be doing especially since we were beginning to have flashbacks of our last appointment which lasted 3 ½ hours. David seemed to be getting more and more agitated as time passed.
Finally, we were called into the ultrasound room. Becky put the gel on my tummy and began looking at Zoe. Zoe began moving right before they called us into the room so I was certain that she was still strong and alive. Her heart rate was 163 bpm which was higher than last time. Becky said that this was her waking rate and that it was high because she was probably resting last time. After we had been in the room for a few minutes a nurse stopped in and gave us the impression that a neonatalogist would probably not be stopping in today because they seem to be backed up in the NICU. Since David and I expected this, we were no more frustrated. The nurse said that she would attempt to find an anesthesiologist to come by to discuss epidurals with us. I have been anxious to speak with an anesthesiologist because there has been some concern that I would not be able to have an epidural due to my previous spinal fusion and the possibility that the hardware in my back would block the space where an epidural would be administered. I brought my most recent x-rays for the anesthesiologist to examine in order to determine if an epidural would be possible. Generally most pregnant women would not be anxious this early about epidurals but because it is possible that Zoe could die at any time and I would have to deliver her, I want to be as ready as possible (as ironic as that sounds to say). The anesthesiologist came into the room sooner than we expected. He looked at my slides and said that there should be no reason that I couldn’t have an epidural. It would just have to be administered higher on my spine. The doctor asked if I had any questions about epidurals in general but since I have had 2 epidural cortisone shots I actually feel fairly comfortable with the thought.
After the anesthesiologist left the room, Becky went back to examining Zoe. Dr. Landwehr came in about 30 minutes later and looked over some of the things that Becky had found. David and I definitely went through a mixture of feelings today. It is always good to see Zoe, but it feels like we always walk away with fair news and bad news, leaving us confused. The good news is that Zoe’s heartbeat is still strong and she seems to have five toes on each foot and on her left hand. Becky could not get a clear picture of Zoe’s right hand but the last time we saw it, she appeared to have 6 fingers. The bad news seems to outweigh the good this time. The minor issue is that Zoe does not have a nasal bone which is typical in someone who has Down syndrome. The worse news is that Zoe seems to have abnormal issues with her heart and her brain, which have always seemed to me to be the most vital internal organs and cannot possibly be interpreted positively. Zoe appears to have water on her brain (hydrocephaly). Dr. Landwehr says that this condition could become less severe as Zoe’s brain continues to grow as long as the water does not increase as well. Her head however, seems to be of the appropriate size. Zoe seems to have 4 chambers to her heart, however, one chamber is collapsed. Dr. Landwehr said that he is making an educated guess but feels that the collapsed chamber is due to something called Hypoplastic left, which basically seems to mean that the blood is not flowing in and out of that chamber the way it should. Dr. Landwehr said that though the water on Zoe’s brain is shuntable, her heart condition is very complex and would take a series of three complicated surgeries to correct. Dr. Landwehr did not feel that the heart condition is something that would affect a newborn. However, as soon as she becomes active, she would have problems related to the heart condition. We just didn’t know how to feel. We desire to know whether to have hope or to prepare for her death and we are just not sure what to do.
Getting back to work (6-8-05)…
I have scheduled my Wednesdays so that I counsel two clients before our doctor’s appointment and four clients after the appointment. We finished our ultrasound with plenty of time to run home and grab something to eat before returning to work. I was reluctant to rush to work but knew that I needed to get there eventually. All four clients that I saw after the appointment were clients that I had not yet seen since returning from sick leave/vacation. They all asked how I was feeling and what was going on with my pregnancy. I thought that I would tell them the basics but two of them asked more specific questions. I just couldn’t hold it in this time and definitely became teary while explaining Zoe’s condition. I know this wasn’t the most appropriate counselor behavior, but I just couldn’t hold it in this time. I hope that this process gets easier.
Dinner (6-8-05)…
A kind friend brought us dinner tonight because she knew that our day would be emotionally draining and she just wanted to serve us in this way. It was a really nice gesture and she was exactly right about the day being a draining one. Wednesday nights are choir practice night and I would generally head straight to practice after my last session. A few days ago I decided to step out of choir until they restart in the fall. Especially with Wednesdays being our appointment day, I feel that this was the absolute best idea. It was a good boundary to set to protect myself. It also allows David and I to sit down, eat together and process our day every Wednesday…all things that we enjoy doing together.
Their positive results (6-8-05)…
David and I were upstairs cleaning when Danny and Nichole came up. They both had smiles on their faces and then Danny said, “Guys, this is awkward but Nichole is pregnant.” Nichole had just taken a pregnancy test and it was positive. Again, David told them that he was really happy. I told them that I too was happy and then told them the thoughts I had been having…how it had been difficult to feel that my happiness for them is tainted by what we are going through with Zoe. They seemed to understand. Nichole said that she had even had thoughts of how it is not fair…how within just a couple months she is pregnant with likely another healthy child. She said she did not feel guilty but that she just didn’t know how it is fair for us. I too have wondered “how is this fair?” Truth is that it isn’t fair.
Today we had another ultrasound appointment with Dr. Landwehr. We were supposed to be meeting with a neonatalogist as well but David and I both had a feeling that meeting would not actually transpire. I was feeling slightly anxious before the appointment as I think I might feel each Wednesday morning (before our standing appointments). We were sitting in the waiting room for about 30 minutes before being called back to our room. Sitting in that waiting room was probably the last thing we wanted to be doing especially since we were beginning to have flashbacks of our last appointment which lasted 3 ½ hours. David seemed to be getting more and more agitated as time passed.
Finally, we were called into the ultrasound room. Becky put the gel on my tummy and began looking at Zoe. Zoe began moving right before they called us into the room so I was certain that she was still strong and alive. Her heart rate was 163 bpm which was higher than last time. Becky said that this was her waking rate and that it was high because she was probably resting last time. After we had been in the room for a few minutes a nurse stopped in and gave us the impression that a neonatalogist would probably not be stopping in today because they seem to be backed up in the NICU. Since David and I expected this, we were no more frustrated. The nurse said that she would attempt to find an anesthesiologist to come by to discuss epidurals with us. I have been anxious to speak with an anesthesiologist because there has been some concern that I would not be able to have an epidural due to my previous spinal fusion and the possibility that the hardware in my back would block the space where an epidural would be administered. I brought my most recent x-rays for the anesthesiologist to examine in order to determine if an epidural would be possible. Generally most pregnant women would not be anxious this early about epidurals but because it is possible that Zoe could die at any time and I would have to deliver her, I want to be as ready as possible (as ironic as that sounds to say). The anesthesiologist came into the room sooner than we expected. He looked at my slides and said that there should be no reason that I couldn’t have an epidural. It would just have to be administered higher on my spine. The doctor asked if I had any questions about epidurals in general but since I have had 2 epidural cortisone shots I actually feel fairly comfortable with the thought.
After the anesthesiologist left the room, Becky went back to examining Zoe. Dr. Landwehr came in about 30 minutes later and looked over some of the things that Becky had found. David and I definitely went through a mixture of feelings today. It is always good to see Zoe, but it feels like we always walk away with fair news and bad news, leaving us confused. The good news is that Zoe’s heartbeat is still strong and she seems to have five toes on each foot and on her left hand. Becky could not get a clear picture of Zoe’s right hand but the last time we saw it, she appeared to have 6 fingers. The bad news seems to outweigh the good this time. The minor issue is that Zoe does not have a nasal bone which is typical in someone who has Down syndrome. The worse news is that Zoe seems to have abnormal issues with her heart and her brain, which have always seemed to me to be the most vital internal organs and cannot possibly be interpreted positively. Zoe appears to have water on her brain (hydrocephaly). Dr. Landwehr says that this condition could become less severe as Zoe’s brain continues to grow as long as the water does not increase as well. Her head however, seems to be of the appropriate size. Zoe seems to have 4 chambers to her heart, however, one chamber is collapsed. Dr. Landwehr said that he is making an educated guess but feels that the collapsed chamber is due to something called Hypoplastic left, which basically seems to mean that the blood is not flowing in and out of that chamber the way it should. Dr. Landwehr said that though the water on Zoe’s brain is shuntable, her heart condition is very complex and would take a series of three complicated surgeries to correct. Dr. Landwehr did not feel that the heart condition is something that would affect a newborn. However, as soon as she becomes active, she would have problems related to the heart condition. We just didn’t know how to feel. We desire to know whether to have hope or to prepare for her death and we are just not sure what to do.
Getting back to work (6-8-05)…
I have scheduled my Wednesdays so that I counsel two clients before our doctor’s appointment and four clients after the appointment. We finished our ultrasound with plenty of time to run home and grab something to eat before returning to work. I was reluctant to rush to work but knew that I needed to get there eventually. All four clients that I saw after the appointment were clients that I had not yet seen since returning from sick leave/vacation. They all asked how I was feeling and what was going on with my pregnancy. I thought that I would tell them the basics but two of them asked more specific questions. I just couldn’t hold it in this time and definitely became teary while explaining Zoe’s condition. I know this wasn’t the most appropriate counselor behavior, but I just couldn’t hold it in this time. I hope that this process gets easier.
Dinner (6-8-05)…
A kind friend brought us dinner tonight because she knew that our day would be emotionally draining and she just wanted to serve us in this way. It was a really nice gesture and she was exactly right about the day being a draining one. Wednesday nights are choir practice night and I would generally head straight to practice after my last session. A few days ago I decided to step out of choir until they restart in the fall. Especially with Wednesdays being our appointment day, I feel that this was the absolute best idea. It was a good boundary to set to protect myself. It also allows David and I to sit down, eat together and process our day every Wednesday…all things that we enjoy doing together.
Their positive results (6-8-05)…
David and I were upstairs cleaning when Danny and Nichole came up. They both had smiles on their faces and then Danny said, “Guys, this is awkward but Nichole is pregnant.” Nichole had just taken a pregnancy test and it was positive. Again, David told them that he was really happy. I told them that I too was happy and then told them the thoughts I had been having…how it had been difficult to feel that my happiness for them is tainted by what we are going through with Zoe. They seemed to understand. Nichole said that she had even had thoughts of how it is not fair…how within just a couple months she is pregnant with likely another healthy child. She said she did not feel guilty but that she just didn’t know how it is fair for us. I too have wondered “how is this fair?” Truth is that it isn’t fair.
Tuesday, June 7, 2005
Back to the Living Room
The Living Room (6-7-05)…
Tonight was the first time I have been back to the Living Room since receiving the news about Zoe. I have been anxious about being around people and anxious to face the possibility of feeling uncomfortable around others and having others feel uncomfortable around me as well.
I arrived about 15 minutes early by myself. When I walked through the doors, two couples were talking to each other and just sort of smiled at me as I entered. I was kind of glad that they were occupied so that I could avoid real interaction with them. I quickly found something to do to keep busy in order to avoid standing there feeling awkward. I arranged candles around the room to create a worshipful environment for the service that was about to start. While working on the candles, Karen Daugherty approached me to see how my week had been so far. She has been very kind throughout the process and it felt alright talking with her for a few moments. I told her that my first day back to work was better than I had expected and that today seemed to be more emotional for some reason. I am not sure if I will be able to predict what days will produce what emotions.
The service started at about 7:30. Instead of the normal night of about 20 minutes of worship, a sermon by David, and a couple of closing songs, we were going to be participating in a type of worship service called “Ministry to Jesus”. Ministry to Jesus is all about worshipping Jesus in whatever way you desire. There were areas set up around the room to read, pray, draw, or work with clay. Music was playing and everyone was free to worship God as they chose. I chose to stay in my seat the entire night and attempt to pray and read the Bible. I started out by telling God that I just needed to feel Him and that I wanted to connect to Him. I cried while I feebly attempted to communicate with Him. Last week when I was asking David about books of the Bible that might be good for me to read right now, I remember that he suggested Thessalonians for some reason. So, I started in Thessalonians. The only verse that stood out to me talked about not allowing the ‘Spirit’s fire’ to die. It went on to say, “hold on to what is good”. I thought of Zoe and the fact that she is indeed a good thing in my life. As physically “messed up” as she is, her soul and her spirit are perfect. She is beautiful and spotless. I am grateful for her and cherish her. I told David that as difficult as it is right now, I am glad that it is Zoe living inside of me. I don’t know how to explain it but I am glad that she is the one that I am having the opportunity to bond with. I love her so much.
After the service had ended, I continued to sit in my chair just kind of waiting for people to clear out around me. David approached me and said that he would like to show me what he had been working on whenever I was ready. He took my hand and led me over to a table where he had been working with clay. David had spent his time reading Genesis 1 and he “created” the world with clay just as God had created it. He enjoyed telling me about making the stars and spreading them out on the table by tossing them in their appropriate spot. David said that he realized that God must have had so much fun creating the world. David then said that as he was staring at the creation, God told him to “mess up” the moon. He didn’t really know what this meant but he decided to pick up the moon and smash it. David then felt like God was telling him to restore the moon to its original form, so he did. David said that this was symbolizing the destruction of sin and how sin “messes up” what God created as perfect. He said that the moon is like Zoe and whether it is now or in eternity, God is restoring her and making her perfect. David handed me a piece of construction paper which he had written on with a marker.
This is what David wrote:
“I am sharing in the sufferings of Christ. My heart is broken for my daughter in the same way that God’s heart is broken over the toxic affects of sin in the world. The world is not as He created it. It is corrupt, polluted, distorted and He longs to create it, and us, and Zoe, anew for eternity. Oh, the pleasure He will have. I want to share in that joy. He is grieved daily. He is overjoyed with His children daily. But oh how he longs to gather His children into his arms for eternity.”
I resonated with what David had been saying. I told him that although God is the ultimate creator of Zoe, David and I are her earthly creators. As her creators, we desire for her to be perfect and it hurts us to know that she is not in the form that we desire for her to be. This is just as it hurt God to see his creation in turmoil. Therefore we are grieving the turmoil of our daughter just as God grieves the turmoil of this world and we are sharing in His suffering. This thought did not necessarily bring me immediate comfort yet it did remind me that God understands the pain that we are experiencing as we hurt for our daughter.
Tonight was the first time I have been back to the Living Room since receiving the news about Zoe. I have been anxious about being around people and anxious to face the possibility of feeling uncomfortable around others and having others feel uncomfortable around me as well.
I arrived about 15 minutes early by myself. When I walked through the doors, two couples were talking to each other and just sort of smiled at me as I entered. I was kind of glad that they were occupied so that I could avoid real interaction with them. I quickly found something to do to keep busy in order to avoid standing there feeling awkward. I arranged candles around the room to create a worshipful environment for the service that was about to start. While working on the candles, Karen Daugherty approached me to see how my week had been so far. She has been very kind throughout the process and it felt alright talking with her for a few moments. I told her that my first day back to work was better than I had expected and that today seemed to be more emotional for some reason. I am not sure if I will be able to predict what days will produce what emotions.
The service started at about 7:30. Instead of the normal night of about 20 minutes of worship, a sermon by David, and a couple of closing songs, we were going to be participating in a type of worship service called “Ministry to Jesus”. Ministry to Jesus is all about worshipping Jesus in whatever way you desire. There were areas set up around the room to read, pray, draw, or work with clay. Music was playing and everyone was free to worship God as they chose. I chose to stay in my seat the entire night and attempt to pray and read the Bible. I started out by telling God that I just needed to feel Him and that I wanted to connect to Him. I cried while I feebly attempted to communicate with Him. Last week when I was asking David about books of the Bible that might be good for me to read right now, I remember that he suggested Thessalonians for some reason. So, I started in Thessalonians. The only verse that stood out to me talked about not allowing the ‘Spirit’s fire’ to die. It went on to say, “hold on to what is good”. I thought of Zoe and the fact that she is indeed a good thing in my life. As physically “messed up” as she is, her soul and her spirit are perfect. She is beautiful and spotless. I am grateful for her and cherish her. I told David that as difficult as it is right now, I am glad that it is Zoe living inside of me. I don’t know how to explain it but I am glad that she is the one that I am having the opportunity to bond with. I love her so much.
After the service had ended, I continued to sit in my chair just kind of waiting for people to clear out around me. David approached me and said that he would like to show me what he had been working on whenever I was ready. He took my hand and led me over to a table where he had been working with clay. David had spent his time reading Genesis 1 and he “created” the world with clay just as God had created it. He enjoyed telling me about making the stars and spreading them out on the table by tossing them in their appropriate spot. David said that he realized that God must have had so much fun creating the world. David then said that as he was staring at the creation, God told him to “mess up” the moon. He didn’t really know what this meant but he decided to pick up the moon and smash it. David then felt like God was telling him to restore the moon to its original form, so he did. David said that this was symbolizing the destruction of sin and how sin “messes up” what God created as perfect. He said that the moon is like Zoe and whether it is now or in eternity, God is restoring her and making her perfect. David handed me a piece of construction paper which he had written on with a marker.
This is what David wrote:
“I am sharing in the sufferings of Christ. My heart is broken for my daughter in the same way that God’s heart is broken over the toxic affects of sin in the world. The world is not as He created it. It is corrupt, polluted, distorted and He longs to create it, and us, and Zoe, anew for eternity. Oh, the pleasure He will have. I want to share in that joy. He is grieved daily. He is overjoyed with His children daily. But oh how he longs to gather His children into his arms for eternity.”
I resonated with what David had been saying. I told him that although God is the ultimate creator of Zoe, David and I are her earthly creators. As her creators, we desire for her to be perfect and it hurts us to know that she is not in the form that we desire for her to be. This is just as it hurt God to see his creation in turmoil. Therefore we are grieving the turmoil of our daughter just as God grieves the turmoil of this world and we are sharing in His suffering. This thought did not necessarily bring me immediate comfort yet it did remind me that God understands the pain that we are experiencing as we hurt for our daughter.
Songs...
Songs have spoken to me through this time. A very kind friend from work sent me the words to this song and I really appreciated it.
http://www.youtube.com/watch?v=O2Ozli3yTVs
Carry You To Jesus
By Steven Curtis Chapman
I will not pretend to feel the pain you’re going through
I know I cannot comprehend the hurt you’ve known
And I used to think it mattered if I understood
But now I just don’t know
Well, I’ll admit sometimes I still wish I knew what to say
And I keep looking for a way to fix it all
But we know we’re at the mercy of God’s higher ways
And our ways are so small
But I will carry you to Jesus
He is everything you need
I will carry you to Jesus on my knees
It’s such a privilege for me to give this gift to you
All I’d ever hope you’d give me in return
Is to know that you’ll be there to do the same for me
When the tables turn
And if you need to cry go on and I,
I will cry along with you, yeah
I’ve given you what I have but still
I know the best thing I can do
Is just pray for you
I’ll carry you
I’ll take you to Jesus on my knees
http://www.youtube.com/watch?v=O2Ozli3yTVs
Carry You To Jesus
By Steven Curtis Chapman
I will not pretend to feel the pain you’re going through
I know I cannot comprehend the hurt you’ve known
And I used to think it mattered if I understood
But now I just don’t know
Well, I’ll admit sometimes I still wish I knew what to say
And I keep looking for a way to fix it all
But we know we’re at the mercy of God’s higher ways
And our ways are so small
But I will carry you to Jesus
He is everything you need
I will carry you to Jesus on my knees
It’s such a privilege for me to give this gift to you
All I’d ever hope you’d give me in return
Is to know that you’ll be there to do the same for me
When the tables turn
And if you need to cry go on and I,
I will cry along with you, yeah
I’ve given you what I have but still
I know the best thing I can do
Is just pray for you
I’ll carry you
I’ll take you to Jesus on my knees
Monday, June 6, 2005
Tainted Happiness...for myself and others
Seeing Danny and Nichole again (6-6-05)…
Danny, Nichole, Josiah and Hannah arrived home from visiting Nichole’s family late Monday night. The kids had fallen asleep in the car so Danny and Nichole took them straight to bed when they got here. David and I were sitting in the family room watching the Pistons and the Heat NBA western finals and Danny and Nichole came back out to join us. They asked us a few questions about our vacation but I don’t think that David and I were very talkative.
Nichole started whispering something to Danny and I instinctively thought I knew what they were talking about. Shortly after, Danny announced that Nichole is late on her period and that they thought she is pregnant. Nichole said that she is going to take a pregnancy test in a few days but that she was sure she was pregnant. I remember saying, “I wondered if you were going to say that” but I didn’t react much more. David genuinely said that he was really happy for them. Nichole said that she didn’t expect much from us and that she probably wouldn’t talk about a lot of the details unless we asked. I remember sitting there thinking, “Here we go again. I don’t know how to react to people’s good news about pregnancy. Why when I thought that I could start being genuinely happy for others do I have to be back at the place where I don’t know how to respond again. Why does others’ happiness have to make me think about my own sadness?”
I cried myself to sleep again. I hate that my happiness has to be tainted with this unbelievable pain. It feels selfish but I also know that my feeling of this not being fair is real. David prayed for me and hugged me while I attempted to fall asleep.
Danny, Nichole, Josiah and Hannah arrived home from visiting Nichole’s family late Monday night. The kids had fallen asleep in the car so Danny and Nichole took them straight to bed when they got here. David and I were sitting in the family room watching the Pistons and the Heat NBA western finals and Danny and Nichole came back out to join us. They asked us a few questions about our vacation but I don’t think that David and I were very talkative.
Nichole started whispering something to Danny and I instinctively thought I knew what they were talking about. Shortly after, Danny announced that Nichole is late on her period and that they thought she is pregnant. Nichole said that she is going to take a pregnancy test in a few days but that she was sure she was pregnant. I remember saying, “I wondered if you were going to say that” but I didn’t react much more. David genuinely said that he was really happy for them. Nichole said that she didn’t expect much from us and that she probably wouldn’t talk about a lot of the details unless we asked. I remember sitting there thinking, “Here we go again. I don’t know how to react to people’s good news about pregnancy. Why when I thought that I could start being genuinely happy for others do I have to be back at the place where I don’t know how to respond again. Why does others’ happiness have to make me think about my own sadness?”
I cried myself to sleep again. I hate that my happiness has to be tainted with this unbelievable pain. It feels selfish but I also know that my feeling of this not being fair is real. David prayed for me and hugged me while I attempted to fall asleep.
Sunday, June 5, 2005
Email Update to Friends
6-5-05 (email to friends)…
I just wanted to write to thank you all for praying for David and I on our vacation. We returned safely on Saturday night and were able to find some peace and happiness while away. We were with wonderful people who got a kick out of spoiling us and ministering to us in whatever way possible. I am certain that your prayers played a big part in allowing us to enjoy our time away.
This is going to be a difficult week for a few reasons and it would be great if you would continue to pray for us. First, I am starting back to my regular work week today. I pray that my personal situation does not hinder my ability to best serve my clients. Second, Wednesday we have another ultrasound appointment. During this appointment, we will begin consultations with a neonatalogist to discuss the level of care and heroic measures for Zoe if she does survive through delivery. We are having to ponder questions that I would have never imagined. Pray that we will have clarity and that the physician will be knowledgeable and compassionate. Third, Thursday we will be meeting with a genetic counselor at the IU Med center to further discuss the genetics of the Trisomy 13 and how it is passed on to our offspring in relation to our own genetic makeup.
Thank you again for your prayers now and in the future. David, Zoe and I need every single one of them. I am certain that Zoe is a fighter and am grateful for that. Most children with Trisomy 13 die before the parent even knows they are pregnant. Zoe is very active. I feel her moving constantly. She is moving as I write this email. I am grateful for every movement I experience. Each night, David and I thank God for another day with our little Zoe.
Thank you again,
Christina
I just wanted to write to thank you all for praying for David and I on our vacation. We returned safely on Saturday night and were able to find some peace and happiness while away. We were with wonderful people who got a kick out of spoiling us and ministering to us in whatever way possible. I am certain that your prayers played a big part in allowing us to enjoy our time away.
This is going to be a difficult week for a few reasons and it would be great if you would continue to pray for us. First, I am starting back to my regular work week today. I pray that my personal situation does not hinder my ability to best serve my clients. Second, Wednesday we have another ultrasound appointment. During this appointment, we will begin consultations with a neonatalogist to discuss the level of care and heroic measures for Zoe if she does survive through delivery. We are having to ponder questions that I would have never imagined. Pray that we will have clarity and that the physician will be knowledgeable and compassionate. Third, Thursday we will be meeting with a genetic counselor at the IU Med center to further discuss the genetics of the Trisomy 13 and how it is passed on to our offspring in relation to our own genetic makeup.
Thank you again for your prayers now and in the future. David, Zoe and I need every single one of them. I am certain that Zoe is a fighter and am grateful for that. Most children with Trisomy 13 die before the parent even knows they are pregnant. Zoe is very active. I feel her moving constantly. She is moving as I write this email. I am grateful for every movement I experience. Each night, David and I thank God for another day with our little Zoe.
Thank you again,
Christina
Returning to our Church
Getting back to First Church (6-5-05)…
This is only the second time since David has been employed at First Church that we have missed 2 Sundays in a row. It was strange being gone that long, nonetheless, it was necessary. David had to leave earlier than I did this morning. He started back teaching Sunday school and I decided to wait and just go to the worship service. I was very anxious about going. Receiving attention was something I have been very uncomfortable with and have avoided over the past three weeks. What if people were looking at me? What if someone said something that upset me?
I walked into service just before it was to start. One lady gave me a hug and said nothing as soon as I walked through the door. That was okay. I was still doing alright at this point. I saw Chris and Jen McKim getting coffee so I decided to walk up to them. I gave Jen a hug and said very little. They didn’t have much to say either. While we were not saying much, David came up behind me and gave me a big hug. He said that he had been looking for me so that he could be with me as soon as I got there. He said that he was actually in mid-conversation with someone and ended the conversation as soon as he saw me. David led me to our seat a few rows back from the platform. He had asked a friend, JD Collins to sit on the other side of me sort of as a buffer. He’s good at playing that role. So, on the one side I had my husband and on the other side was JD. I felt pretty protected.
The service began as normal with a few praise and worship songs. I stood with the rest of the congregation but found it hard to sing or at least sing loud. When I couldn’t bring myself to mouth the words, I’d just close my eyes and listen to the words. We sang Amazing Grace and I think David and I were both crying.
The choir sang after we sang through a few praise choruses. It was strange to be sitting in the congregation instead of being up with the choir. But I just can’t fake it right now and I wasn’t ready to stand up on the platform with 350 people staring my direction. That was a little more (okay, a lot more) than I could handle.
After service, one very sweet lady came up to us and gave hugs to David and I. She said, “I have no words but I just wanted to hug you and tell you I love you.” She could not get any of her words out without crying. Several other women came up to me and hugged me and some even kissed my cheeks. They didn’t have anything to say which was quite alright by me.
So, it was over. I made it through the service and even interacted a little with some people. It was pretty exhausting but I did it.
You look adorable (6-5-05)…
I received an email from a friend from church who talked to me a little bit today. She said, “I hope this is not out of line but I just have to tell you that you look so adorable pregnant.” I was sincerely grateful for her compliment. It actually brought tears to my eyes. I told her that ever since we started trying to get pregnant, I wanted to be one of those adorable pregnant ladies. Now that we have this terrible news about Zoe, I figured that people would try and avoid the topic of me being pregnant altogether. So for her to say that meant a lot.
This is only the second time since David has been employed at First Church that we have missed 2 Sundays in a row. It was strange being gone that long, nonetheless, it was necessary. David had to leave earlier than I did this morning. He started back teaching Sunday school and I decided to wait and just go to the worship service. I was very anxious about going. Receiving attention was something I have been very uncomfortable with and have avoided over the past three weeks. What if people were looking at me? What if someone said something that upset me?
I walked into service just before it was to start. One lady gave me a hug and said nothing as soon as I walked through the door. That was okay. I was still doing alright at this point. I saw Chris and Jen McKim getting coffee so I decided to walk up to them. I gave Jen a hug and said very little. They didn’t have much to say either. While we were not saying much, David came up behind me and gave me a big hug. He said that he had been looking for me so that he could be with me as soon as I got there. He said that he was actually in mid-conversation with someone and ended the conversation as soon as he saw me. David led me to our seat a few rows back from the platform. He had asked a friend, JD Collins to sit on the other side of me sort of as a buffer. He’s good at playing that role. So, on the one side I had my husband and on the other side was JD. I felt pretty protected.
The service began as normal with a few praise and worship songs. I stood with the rest of the congregation but found it hard to sing or at least sing loud. When I couldn’t bring myself to mouth the words, I’d just close my eyes and listen to the words. We sang Amazing Grace and I think David and I were both crying.
The choir sang after we sang through a few praise choruses. It was strange to be sitting in the congregation instead of being up with the choir. But I just can’t fake it right now and I wasn’t ready to stand up on the platform with 350 people staring my direction. That was a little more (okay, a lot more) than I could handle.
After service, one very sweet lady came up to us and gave hugs to David and I. She said, “I have no words but I just wanted to hug you and tell you I love you.” She could not get any of her words out without crying. Several other women came up to me and hugged me and some even kissed my cheeks. They didn’t have anything to say which was quite alright by me.
So, it was over. I made it through the service and even interacted a little with some people. It was pretty exhausting but I did it.
You look adorable (6-5-05)…
I received an email from a friend from church who talked to me a little bit today. She said, “I hope this is not out of line but I just have to tell you that you look so adorable pregnant.” I was sincerely grateful for her compliment. It actually brought tears to my eyes. I told her that ever since we started trying to get pregnant, I wanted to be one of those adorable pregnant ladies. Now that we have this terrible news about Zoe, I figured that people would try and avoid the topic of me being pregnant altogether. So for her to say that meant a lot.
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