Thursday, February 26, 2009
The post we never wanted to write.
We found out today at our ultrasound appointment that Mary Grace had passed away, likely yesterday (Ash Wednesday) or this morning. I will be induced (starting late) this evening (Thursday) to deliver her, and we are in the process of figuring out funeral arrangements. Please keep us in your prayers and we'll post as we know more about the funeral time, etc.
Monday, February 23, 2009
Prayers and Fasting
Hey everyone, this is Rob putting in a note at Angela's request. Tomorrow 2/24 and Wednesday 2/25 along with some friends, we are going to be fasting and praying for the complete healing of Mary Grace, prior to our visit to the doctor on Thursday morning. We are only fasting from 8am to 12pm, and this can be a complete fast, only water and bread, depriving yourself something in the morning that you normally have (like coffee), or whatever you feel comfortable with.
Thank you to everyone for your continued support and prayers, and Angela should probably resume posting on Wednesday.
-Rob
Thank you to everyone for your continued support and prayers, and Angela should probably resume posting on Wednesday.
-Rob
Friday, February 20, 2009
Choosing life is choosing to love God.
Isabel and I are in Hendersonville right now as I am dropping her off to stay with Grammy and Grandpa G. for the weekend. Robert and I volunteer with Catholic Engaged Encounter which provides a weekend retreat for engaged couples, and that is this weekend. After the weekend I will pick Isabel back up and we will stay with some dear friends for a few days before heading back to Raleigh. Bottom line: this means I will likely not post for a few days and I don't want to worry anyone! We will be busy and I am glad for that since our next ultrasound seems like it's far off; it will be a good way to pass the time.
I want to thank everyone again for your supportive comments- I read each and every comment and often re-read them to get encouragement! I did however experience (second hand) my first negative piece of advice and opinion yesterday. It was relayed to me that one lady felt that maybe I should start listening to God and not try to have any more children, (as if God were saying "this is your third problem pregnancy, you should just quit"). As if that wasn't enough, she went on to say that I don't want to burden myself with raising a disabled child. Absolutely unbelievable. I don't think someone could say anything worse to a person in our situation. Now in all fairness, my mom says this lady is a good person who is misguided. It left me feeling sad for her...I wasn't initially angry about her advice (which surprised me!), I just felt hurt that that was her opinion; that she would think this baby means so little to Robert and I that we would abort her just so that we wouldn't be "burdened" by a disabled child. I will be blessed if my child even makes it to birth. How selfish to think that I wouldn't be blessed to raise her if she could survive longer. The whole conversation really ate at my heart over the night.
This morning we went to Mass at my mom's church and this was the Gospel reading: Mark 8:34-9:1
Jesus summoned the crowd with his disciples and said to them,
"Whoever wishes to come after me must deny himself,
take up his cross, and follow me.
For whoever wishes to save his life will lose it,
but whoever loses his life for my sake
and that of the Gospel will save it.
What profit is there for one to gain the whole world
and forfeit his life?
What could one give in exchange for his life?
Whoever is ashamed of me and of my words
in this faithless and sinful generation,
the Son of Man will be ashamed of
when he comes in his Father's glory with the holy angels."
He also said to them,
"Amen, I say to you,
there are some standing here who will not taste death
until they see that the Kingdom of God has come in power.
The homily, likewise reminded us that we are all children of God and when we love one another we are loving God. I mean, was that scripture passage and the homily just meant for me to hear today or what?! If I by a miracle of God, DO get to bring Mary Grace home and she is disabled then I will love her and that will be me loving God! And if she is disabled and I have to give up parts of my life to take care of her, then I am giving up my life for CHRIST, because she is HIS CHILD!
This was just a powerful reminder that we are on the right path by choosing LIFE; choosing to carry Mary Grace until God sees fit to take her, and loving her with or without triploidy and all the problems it causes.
Thank you friends for your continued prayers!
I want to thank everyone again for your supportive comments- I read each and every comment and often re-read them to get encouragement! I did however experience (second hand) my first negative piece of advice and opinion yesterday. It was relayed to me that one lady felt that maybe I should start listening to God and not try to have any more children, (as if God were saying "this is your third problem pregnancy, you should just quit"). As if that wasn't enough, she went on to say that I don't want to burden myself with raising a disabled child. Absolutely unbelievable. I don't think someone could say anything worse to a person in our situation. Now in all fairness, my mom says this lady is a good person who is misguided. It left me feeling sad for her...I wasn't initially angry about her advice (which surprised me!), I just felt hurt that that was her opinion; that she would think this baby means so little to Robert and I that we would abort her just so that we wouldn't be "burdened" by a disabled child. I will be blessed if my child even makes it to birth. How selfish to think that I wouldn't be blessed to raise her if she could survive longer. The whole conversation really ate at my heart over the night.
This morning we went to Mass at my mom's church and this was the Gospel reading: Mark 8:34-9:1
Jesus summoned the crowd with his disciples and said to them,
"Whoever wishes to come after me must deny himself,
take up his cross, and follow me.
For whoever wishes to save his life will lose it,
but whoever loses his life for my sake
and that of the Gospel will save it.
What profit is there for one to gain the whole world
and forfeit his life?
What could one give in exchange for his life?
Whoever is ashamed of me and of my words
in this faithless and sinful generation,
the Son of Man will be ashamed of
when he comes in his Father's glory with the holy angels."
He also said to them,
"Amen, I say to you,
there are some standing here who will not taste death
until they see that the Kingdom of God has come in power.
The homily, likewise reminded us that we are all children of God and when we love one another we are loving God. I mean, was that scripture passage and the homily just meant for me to hear today or what?! If I by a miracle of God, DO get to bring Mary Grace home and she is disabled then I will love her and that will be me loving God! And if she is disabled and I have to give up parts of my life to take care of her, then I am giving up my life for CHRIST, because she is HIS CHILD!
This was just a powerful reminder that we are on the right path by choosing LIFE; choosing to carry Mary Grace until God sees fit to take her, and loving her with or without triploidy and all the problems it causes.
Thank you friends for your continued prayers!
Wednesday, February 18, 2009
Full Amnio Results.
I called today to check if the full amniocentesis results had come in and sure enough, they had. Mary Grace does have full triploidy, 69,XXX. Which means that she has 69 chromosomes in every cell in her body. Two "X's" meaning "girl" and the extra "X" means she has an extra set of chromosomes.
This is a very informative website that can help you to understand triploidy: http://www.healthline.com/galecontent/triploidy
There really wasn't much more to report. My next appointment is with the UNC Specialty Clinic next Thursday, February 26th. We will do another ultrasound then to check her growth and to see what all her problem spots look like. Hopefully her heart will be in good shape...please pray for a perfectly formed and working heart between now and next Thursday. Rob and I are taking the news really well; since we had already gotten the preliminary results last Wednesday, it wasn't a shock to us that the full test results would be confirmation of triploidy.
"The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles, they will run and not grow weary, they will walk and not be faint." Isaiah 41:29-31
This is a very informative website that can help you to understand triploidy: http://www.healthline.com/galecontent/triploidy
There really wasn't much more to report. My next appointment is with the UNC Specialty Clinic next Thursday, February 26th. We will do another ultrasound then to check her growth and to see what all her problem spots look like. Hopefully her heart will be in good shape...please pray for a perfectly formed and working heart between now and next Thursday. Rob and I are taking the news really well; since we had already gotten the preliminary results last Wednesday, it wasn't a shock to us that the full test results would be confirmation of triploidy.
"The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles, they will run and not grow weary, they will walk and not be faint." Isaiah 41:29-31
19 Weeks 4 Days, Regular OB Appointment
Well Praise to God that she still has a heartbeat! I did not doubt that her little heart would be beating at our regular OBGYN appointment this morning, but it is still such a praiseworthy sound! Another praise is that I gained a pound since my last visit 2 weeks ago!! (Now hopefully some of that can be attributed to Mary Grace having grown an extradorinary amount in a very short time- catch up my little one!)
Yesterday Robert and I had compiled a list of questions. One list was medical questions for our doctors and the other list is for our priest; they are more religious/spiritual/moral in nature. I felt a little troubled when I was compiling these questions, and this is why: If I make preparations for Mary Grace's death, then does that mean that I don't have faith that God will heal her?? And if I don't have enough faith like the people in the bible stories then maybe He won't. I have really been battling with this over the last couple of days. Do I dare make a list of "what happens if she dies?" questions??? God knows our thoughts, so even thinking about the whole matter might mean my faith is weak!
In the end, we felt that God wants us to be prepared...he put us through the other losses so that we would have preparation for the future. Especially, like I've talked about before with the ectopic pregnancy; being prepared for moral issues that we could face. If she's born with this fatal condition, do we just provide her with comfort care or are we morally obligated to keep her alive on a ventilator or with other extreme measures? These are the questions (which will obviously be directed to our pastor) that we need answers for and I believe that God wants us to be prepared while remaining hopeful and trusting in Him.
So our questions for Dr. S were:
1. Are there any extra risks to me if this pregnancy continues to term? We had read about a potential increased risk for pre-eclampsia (pregnancy induced hypertension) and also potentially cancer. He did not think there were any extreme risks for these conditions...just as much as any other pregnancy for the pre-eclampsia and very little risk of cancer. **I also need to add here that we would continue with this pregnancy regardless of the risks to me.
2. If we continue at the specialty clinic would they continue to do ultrasounds on Mary Grace and how often? Yes, he wants me to continue to go there every 4-6 weeks (which means I will get to see her often!).
3. How often would I continue to see Dr. S to check for hearttones? My visits with him will continue just as if it were a normal pregnancy (right now that means every 4 weeks) with all the regular tests (like the glucose tolerance test for gestational diabetes, etc.)
4. If she is stillborn will she get a birth or death certificate? Yes, after 20 weeks (which is in 3 days).
5. If we make it to delivery do we do a c-section or vaginal birth? That depends on alot of things...of course my doc did not want to really "go there" until we see how long she makes it (which I wanted to tell him would be the whole way!)..but he made it sound like since she would likely be smaller we could try a vaginal delivery and they would monitor her and c-section would be the backup plan. This is a question I will likely ask my specialist doctor at next week's appointment...because it seems to me that all the stories I have read where the baby goes to term end up with a c-section. There is still alot of uncertainty about where I would deliver according to Dr. S. While the specialty clinic had basically said, "you would deliver at Rex because there is nothing we can do for the baby anyway", Dr. S seemed to be of the opinion that it was possible that the delivery would be at a more specialized location like UNC Hospital. So I feel good with the majority of our care being in Dr. S's hands...I really hope God can just amaze all these doctors with a miracle!
Still no word on the full amnio results. I was really expecting them yesterday and now I'm really expecting them today. Tomorrow will be the full 14 days of waiting and you can bet that I will be calling them if they have not called me.
Yesterday Robert and I had compiled a list of questions. One list was medical questions for our doctors and the other list is for our priest; they are more religious/spiritual/moral in nature. I felt a little troubled when I was compiling these questions, and this is why: If I make preparations for Mary Grace's death, then does that mean that I don't have faith that God will heal her?? And if I don't have enough faith like the people in the bible stories then maybe He won't. I have really been battling with this over the last couple of days. Do I dare make a list of "what happens if she dies?" questions??? God knows our thoughts, so even thinking about the whole matter might mean my faith is weak!
In the end, we felt that God wants us to be prepared...he put us through the other losses so that we would have preparation for the future. Especially, like I've talked about before with the ectopic pregnancy; being prepared for moral issues that we could face. If she's born with this fatal condition, do we just provide her with comfort care or are we morally obligated to keep her alive on a ventilator or with other extreme measures? These are the questions (which will obviously be directed to our pastor) that we need answers for and I believe that God wants us to be prepared while remaining hopeful and trusting in Him.
So our questions for Dr. S were:
1. Are there any extra risks to me if this pregnancy continues to term? We had read about a potential increased risk for pre-eclampsia (pregnancy induced hypertension) and also potentially cancer. He did not think there were any extreme risks for these conditions...just as much as any other pregnancy for the pre-eclampsia and very little risk of cancer. **I also need to add here that we would continue with this pregnancy regardless of the risks to me.
2. If we continue at the specialty clinic would they continue to do ultrasounds on Mary Grace and how often? Yes, he wants me to continue to go there every 4-6 weeks (which means I will get to see her often!).
3. How often would I continue to see Dr. S to check for hearttones? My visits with him will continue just as if it were a normal pregnancy (right now that means every 4 weeks) with all the regular tests (like the glucose tolerance test for gestational diabetes, etc.)
4. If she is stillborn will she get a birth or death certificate? Yes, after 20 weeks (which is in 3 days).
5. If we make it to delivery do we do a c-section or vaginal birth? That depends on alot of things...of course my doc did not want to really "go there" until we see how long she makes it (which I wanted to tell him would be the whole way!)..but he made it sound like since she would likely be smaller we could try a vaginal delivery and they would monitor her and c-section would be the backup plan. This is a question I will likely ask my specialist doctor at next week's appointment...because it seems to me that all the stories I have read where the baby goes to term end up with a c-section. There is still alot of uncertainty about where I would deliver according to Dr. S. While the specialty clinic had basically said, "you would deliver at Rex because there is nothing we can do for the baby anyway", Dr. S seemed to be of the opinion that it was possible that the delivery would be at a more specialized location like UNC Hospital. So I feel good with the majority of our care being in Dr. S's hands...I really hope God can just amaze all these doctors with a miracle!
Still no word on the full amnio results. I was really expecting them yesterday and now I'm really expecting them today. Tomorrow will be the full 14 days of waiting and you can bet that I will be calling them if they have not called me.
Monday, February 16, 2009
Expecting miracles.
This weekend was a flurry of activity, so I apologize for not posting anything over the last several days. My parents came into town on Friday afternoon. A quick trip to Walmart had me in tears because while we were in line Isabel saw a baby and immediately started telling Grammy that "when Mary Grace plays with Roscoe (Grammy's cat) she would laugh and laugh". I lost it right there in the checkout line, pulling out kleenex and wiping my eyes- people must have thought I was looney.
That evening my parents watched Isabel while Rob and I went to an intimate gathering of prayer warriors who wanted to pray for Mary Grace and our family! These are friends of Rob's mom (whom we had never met!) and we felt so blessed and humbled to be prayed over by them. I cannot express again what it means to us to have this prayer support from people all over- friends, family, friends of friends, people we don't even know! Every little prayer lifted up for Mary Grace is so important, so please whenever you think of us just offer up the quickest little prayer! We thank you from the bottom of our hearts!
On Saturday, my Mom and I attended a Catholic conference called "Ignited by Truth" with some amazing speakers. I asked God to reveal something powerful to me about what we're going through and He did not let me down. The most striking speaker to me was Imaculee Ilibagiza (www.immaculee.com) who survived the 1994 Rwandan genocide of 1 million people in just 100 days. Her entire family was killed, most everyone she knew and loved had died and yet she told her horrific story with this joyous faith in God who truly performed miracles to keep her alive. I thought to myself, "if she can make it through such a horror story and come through it with an even closer relationship with God, praising Him in all things and forgiving her enemies, then surely Rob and I can make it through this difficult time with renewed hope."
I had this thought in my head that I should ask her to pray for Mary Grace. But I also had all these doubts...there are over 2000 people at this conference, even though she will be signing books how could I even wait in a line that long? But God opened a door for me because after we ate and browsed the vendors we bought one of her books and she was there signing books with only 2 people in line and she was about to take her lunch break! So I jumped in line and shakily approached her. I think I was shaking because: A. I'm shy. and B. It's been alot harder to actually tell people about Mary Grace being sick than it has been when I've rehearsed telling people in my mind. I told her that I was very touched by her story and that I felt led to ask if she would pray for me. I told her about Mary Grace and Imaculee's face was compassion, sorrow and kindess all at once. She touched my belly twice and asked how far along I was and if the doctors were sure she would not live. She said that miracles do happen...ask Our Lady to pray for Mary Grace and pray the Seven Sorrows Rosary for her.
Then another speaker kept saying that miracles were happening today like we haven't seen in 2000 years. And wouldn't you know that Sunday's readings were about Jesus healing the leper?? Healings! Miracles! I mean is this stuff just coincidental?? Or is God trying to send me a message to have great faith, and expect miracles! Check out these verses from Matthew 15:
21 Leaving that place, Jesus withdrew to the region of Tyre and Sidon.
22 A Canaanite woman from that vicinity came to him, crying out, "Lord, Son of David, have mercy on me! My daughter is suffering terribly from demon-possession."
23 Jesus did not answer a word. So his disciples came to him and urged him, "Send her away, for she keeps crying out after us."
24 He answered, "I was sent only to the lost sheep of Israel."
25 The woman came and knelt before him. "Lord, help me!" she said.
26 He replied, "It is not right to take the children's bread and toss it to their dogs."
27 "Yes, Lord," she said, "but even the dogs eat the crumbs that fall from their masters' table."
28 Then Jesus answered, "Woman, you have great faith! Your request is granted." And her daughter was healed from that very hour.(NIV)
A small miracle is that my belly is finally at 19 weeks starting to pop out (since I've been paranoid that it was actually shrinking after The Ultrasound.) Also another small miracle is that I've felt Mary Grace become alot more active again; more movement and stronger kicks. Maybe it's the new optimism I am feeling, this renewed hope that I have that is rubbing off onto her. Maybe all the positive vibes are actually doing her good!
So that has been our weekend. It's now Monday evening and we did not hear today from genetic counselor. I'm kind of expecting her to call tomorrow with the full amnio results. I'll update again as soon as we get those.
That evening my parents watched Isabel while Rob and I went to an intimate gathering of prayer warriors who wanted to pray for Mary Grace and our family! These are friends of Rob's mom (whom we had never met!) and we felt so blessed and humbled to be prayed over by them. I cannot express again what it means to us to have this prayer support from people all over- friends, family, friends of friends, people we don't even know! Every little prayer lifted up for Mary Grace is so important, so please whenever you think of us just offer up the quickest little prayer! We thank you from the bottom of our hearts!
On Saturday, my Mom and I attended a Catholic conference called "Ignited by Truth" with some amazing speakers. I asked God to reveal something powerful to me about what we're going through and He did not let me down. The most striking speaker to me was Imaculee Ilibagiza (www.immaculee.com) who survived the 1994 Rwandan genocide of 1 million people in just 100 days. Her entire family was killed, most everyone she knew and loved had died and yet she told her horrific story with this joyous faith in God who truly performed miracles to keep her alive. I thought to myself, "if she can make it through such a horror story and come through it with an even closer relationship with God, praising Him in all things and forgiving her enemies, then surely Rob and I can make it through this difficult time with renewed hope."
I had this thought in my head that I should ask her to pray for Mary Grace. But I also had all these doubts...there are over 2000 people at this conference, even though she will be signing books how could I even wait in a line that long? But God opened a door for me because after we ate and browsed the vendors we bought one of her books and she was there signing books with only 2 people in line and she was about to take her lunch break! So I jumped in line and shakily approached her. I think I was shaking because: A. I'm shy. and B. It's been alot harder to actually tell people about Mary Grace being sick than it has been when I've rehearsed telling people in my mind. I told her that I was very touched by her story and that I felt led to ask if she would pray for me. I told her about Mary Grace and Imaculee's face was compassion, sorrow and kindess all at once. She touched my belly twice and asked how far along I was and if the doctors were sure she would not live. She said that miracles do happen...ask Our Lady to pray for Mary Grace and pray the Seven Sorrows Rosary for her.
Then another speaker kept saying that miracles were happening today like we haven't seen in 2000 years. And wouldn't you know that Sunday's readings were about Jesus healing the leper?? Healings! Miracles! I mean is this stuff just coincidental?? Or is God trying to send me a message to have great faith, and expect miracles! Check out these verses from Matthew 15:
21 Leaving that place, Jesus withdrew to the region of Tyre and Sidon.
22 A Canaanite woman from that vicinity came to him, crying out, "Lord, Son of David, have mercy on me! My daughter is suffering terribly from demon-possession."
23 Jesus did not answer a word. So his disciples came to him and urged him, "Send her away, for she keeps crying out after us."
24 He answered, "I was sent only to the lost sheep of Israel."
25 The woman came and knelt before him. "Lord, help me!" she said.
26 He replied, "It is not right to take the children's bread and toss it to their dogs."
27 "Yes, Lord," she said, "but even the dogs eat the crumbs that fall from their masters' table."
28 Then Jesus answered, "Woman, you have great faith! Your request is granted." And her daughter was healed from that very hour.(NIV)
A small miracle is that my belly is finally at 19 weeks starting to pop out (since I've been paranoid that it was actually shrinking after The Ultrasound.) Also another small miracle is that I've felt Mary Grace become alot more active again; more movement and stronger kicks. Maybe it's the new optimism I am feeling, this renewed hope that I have that is rubbing off onto her. Maybe all the positive vibes are actually doing her good!
So that has been our weekend. It's now Monday evening and we did not hear today from genetic counselor. I'm kind of expecting her to call tomorrow with the full amnio results. I'll update again as soon as we get those.
Friday, February 13, 2009
I'm still here.
Wednesday was the feast day of Our Lady of Lourdes. I had a hard time talking to people on Wednesday. Finding out that the test results were showing Triploidy just made the whole thing real, and it was hard to receive news that was even worse than what we were expecting. It's taking time for it to sink in. I felt depressed by the news and was unsure if I would attend bible study that night, just because I couldn't imagine facing anyone. But I knew it was the feast day of Our Lady of Lourdes and I had asked Mary again to intercede for us on her feast day, that God might save Mary Grace. I thought about emailing my bible study group to see if anyone had any blessed water from Lourdes. But since I was so unsure if I was going to go, I decided not to ask. I just thought, "If it is meant to be that we are to bless Mary Grace with holy water then someone will show up at bible study with it!" And so I went that night to bible study and waited. As soon as she arrived, Marilyn said, "I almost brought my holy water from Lourdes- it's in my classroom. (there at the church's school!) Do you want me to go get it?" "YES!" I said, "Go get it!!" I was so humbled that she would offer and so thrilled that God answered my plea! So they blessed me with holy water from Lourdes on the feast day of Our Lady of Lourdes and lit the most fragant smelling blessed candle for my little Mary Grace. I felt so blessed that I had gone and so blessed to be around such God-filled women!
I got some messages about not having posted yesterday from some concerned friends and I am okay. When I woke up yesterday, I must have slept in an awkward position, because I woke up and could not turn or bend my neck- it hurt terribly! I had to make all my movements by bending or turning at the waist, which looked ridiculous. I went to the chiropractor that morning who told me it was likely caused by stress... hmmm, I think so! He told me I had sprained a ligament in my neck and worked on it; today I'm feeling much much better and have more movement again. In any case that is the main reason there was no post...just that I was in some serious pain!
Wednesday and Thursday it was hard to feel joy. But today I feel like it is starting to come back, which is what I want. I want to continue to be joyful that I am pregnant. There will be a time for grieving, but for now I want to enjoy carrying around this precious little life inside me. I want to be hopeful and continue with our life. We have lots of hard decisions to make and I don't want it to sound like I am trying to escape reality. Trust me, I know what the reality is. But while I can celebrate her alive in me, I will! There are so many things about this situation that I can not choose. But I can choose to celebrate Mary Grace while she is alive in me. And I can choose to pray for her healing and to trust in God (whatever the outcome).
"Be joyful always; pray continually; give thanks in all circumstances, for that is God's will for you in Christ Jesus." 1 Thessalonians 5:16-18
I got some messages about not having posted yesterday from some concerned friends and I am okay. When I woke up yesterday, I must have slept in an awkward position, because I woke up and could not turn or bend my neck- it hurt terribly! I had to make all my movements by bending or turning at the waist, which looked ridiculous. I went to the chiropractor that morning who told me it was likely caused by stress... hmmm, I think so! He told me I had sprained a ligament in my neck and worked on it; today I'm feeling much much better and have more movement again. In any case that is the main reason there was no post...just that I was in some serious pain!
Wednesday and Thursday it was hard to feel joy. But today I feel like it is starting to come back, which is what I want. I want to continue to be joyful that I am pregnant. There will be a time for grieving, but for now I want to enjoy carrying around this precious little life inside me. I want to be hopeful and continue with our life. We have lots of hard decisions to make and I don't want it to sound like I am trying to escape reality. Trust me, I know what the reality is. But while I can celebrate her alive in me, I will! There are so many things about this situation that I can not choose. But I can choose to celebrate Mary Grace while she is alive in me. And I can choose to pray for her healing and to trust in God (whatever the outcome).
"Be joyful always; pray continually; give thanks in all circumstances, for that is God's will for you in Christ Jesus." 1 Thessalonians 5:16-18
Wednesday, February 11, 2009
They think it's Triploidy.
It's been one week since we found out Mary Grace has so many problems. I am now 18 weeks and 4 days pregnant. I didn't think it could get worse than a diagnosis of Trisomy 18, but it can. Our genetic counselor called and the preliminary (FISH test) results are in and while the testing conditions were "suboptimal" according to our counselor, they found chromosomal abnormalities which they believe is Triploidy.
"While an extra copy of one chromosome (as in Trisomy 18- extra copy of chromosome 18) was very serious, an extra copy of every chromosome is far, far worse," our counselor told me. I let that sink in while I knelt on the floor in stunned silence. I was in the middle of prayer when the phone rang. Praying for healing, praying for the diagnosis not to be a Trisomy...and now, it's not.
She went on to explain that most Triploidy babies are miscarried in the first trimester, and it is rare that they carry on to the 2nd or third trimester, rarer still that a baby is born alive, and if so it will only live briefly after birth. There is nothing they can do to help the pregnancy, she added.
I got a little more information from her and then hung up. As if the last week hasn't already seemed like a reality that wasn't ours, now it feels even more surreal and clouded. I got online to look up more information and Mary Grace kicked me in the side, as if to say, "I'm still here!" I told her to keep fighting. We are going to pray our hearts out for you, Little One! God's plan may not be for a miracle, but that's not going to stop us from asking.
"Finally, be strong in the Lord and in His mighty power." Ephesians 6:10
"While an extra copy of one chromosome (as in Trisomy 18- extra copy of chromosome 18) was very serious, an extra copy of every chromosome is far, far worse," our counselor told me. I let that sink in while I knelt on the floor in stunned silence. I was in the middle of prayer when the phone rang. Praying for healing, praying for the diagnosis not to be a Trisomy...and now, it's not.
She went on to explain that most Triploidy babies are miscarried in the first trimester, and it is rare that they carry on to the 2nd or third trimester, rarer still that a baby is born alive, and if so it will only live briefly after birth. There is nothing they can do to help the pregnancy, she added.
I got a little more information from her and then hung up. As if the last week hasn't already seemed like a reality that wasn't ours, now it feels even more surreal and clouded. I got online to look up more information and Mary Grace kicked me in the side, as if to say, "I'm still here!" I told her to keep fighting. We are going to pray our hearts out for you, Little One! God's plan may not be for a miracle, but that's not going to stop us from asking.
"Finally, be strong in the Lord and in His mighty power." Ephesians 6:10
Tuesday, February 10, 2009
Patience and Perserverance.
Our genetic counselor called this morning to apologize that they had messed up and did not order the test that would give us early results. She spoke with the lab director and apparently they are able to still run the test, and the results should likely be in tomorrow (Wednesday). She expects the full amnio results at the beginning of next week.
So again we wait. God has completely been preparing us for this time. We did alot of waiting last year...to get pregnant, to heal after a loss, each month of trying to conceive again, then waiting to make it through the first trimester where we felt "safe". It's hard to wait for God's timing. It's hard to wait for everything to unfold...if we could only see what God sees! If we could only understand the big picture.
Our trials last year helped prepare us to have patience (not that we have mastered this virtue by any means)...but it must have been practice for what is ahead of us. I can finally pull some "meaning" from our losses last year. The ectopic pregnancy was a huge moral challenge for us- how do you go about removing the baby who cannot survive growing on an ovary or in a fallopian tube? Is there a moral way and an immoral way? Never did we think we would have to ask ourselves such questions! Yet, we did and we were challenged to find morally acceptable answers. Answers which left us confident of future decisions regarding the value and dignity of human life. This could have only been a deep preparation for the trial which we face now with our little Mary Grace. We would never consider aborting our child. But what if we are faced with caring for this child with many special needs? We can clearly say this year that we are joyfully up for the challenge if the other option is not being allowed to care for her at all! We would gladly take this on if it is God's plan to give her to us. And could I have answered that question in the same way last year?? I think I would have been overwhelmed in a fearful sort of way. I would not have been mature enough to accept what could be before us. God has been preparing our hearts.
My dear friend Meredith made me a scripture book with uplifting and inspirational bible verses for this time in our life...here is the one I am reading today. It seems so fitting.
"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perserverance. Perserverance must finish its work so that you may be mature and complete, not lacking anything." James 1:2-4
So again we wait. God has completely been preparing us for this time. We did alot of waiting last year...to get pregnant, to heal after a loss, each month of trying to conceive again, then waiting to make it through the first trimester where we felt "safe". It's hard to wait for God's timing. It's hard to wait for everything to unfold...if we could only see what God sees! If we could only understand the big picture.
Our trials last year helped prepare us to have patience (not that we have mastered this virtue by any means)...but it must have been practice for what is ahead of us. I can finally pull some "meaning" from our losses last year. The ectopic pregnancy was a huge moral challenge for us- how do you go about removing the baby who cannot survive growing on an ovary or in a fallopian tube? Is there a moral way and an immoral way? Never did we think we would have to ask ourselves such questions! Yet, we did and we were challenged to find morally acceptable answers. Answers which left us confident of future decisions regarding the value and dignity of human life. This could have only been a deep preparation for the trial which we face now with our little Mary Grace. We would never consider aborting our child. But what if we are faced with caring for this child with many special needs? We can clearly say this year that we are joyfully up for the challenge if the other option is not being allowed to care for her at all! We would gladly take this on if it is God's plan to give her to us. And could I have answered that question in the same way last year?? I think I would have been overwhelmed in a fearful sort of way. I would not have been mature enough to accept what could be before us. God has been preparing our hearts.
My dear friend Meredith made me a scripture book with uplifting and inspirational bible verses for this time in our life...here is the one I am reading today. It seems so fitting.
"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perserverance. Perserverance must finish its work so that you may be mature and complete, not lacking anything." James 1:2-4
Monday, February 9, 2009
No amnio results yet.
Please continue to lift us up in prayer. We did not receive the call about the preliminary amnio results today. I gave them until 3pm and then I called to check and our genetic counselor was in a meeting. The lady I talked to looked to see if our results were in and she did not see them. She said that our genetic counselor would call us tomorrow morning and let us know more after she checked with the lab. I was still hopeful for an "after hours" phone call, but no such luck.
Also I don't know how I missed it, but the responsorial psalm that we sang at church yesterday had an extra verse that I left out in my post accidentally. While Psalm 147 is quite longer than the few verses I posted, I somehow overlooked a significant part that we sang in church, "Glorify the Lord, Jerusalem; Zion, offer praise to your God, Who has strengthened the bars of your gates, blessed your children within you, Brought peace to your borders, and filled you with the finest wheat" Psalm 147:12-14. Wow! Now yesterday's post makes a little more sense why that psalm jumped off the page at me! Thank you Pam, for pointing that out!
Finally, tonight we told Isabel that Mary Grace is sick. I had been rehearsing it in my mind, so I thought it would be easier than it was. Once I told her that we had something we needed to tell her about Mary Grace I paused and for a few seconds the words would just not come out. But then I told her that Mary Grace is sick in Mommy's tummy. I explained that she has boo boos on her body- there is one on her head, boo boos on her hands...Isabel stopped me and told me about when she had a boo boo on her finger. We told her that Mary Grace had a boo boo on her tummy and that she was having a little trouble growing big and strong. I told her that we were going to pray together for God to heal Mary Grace every night before we went to bed and totally unprompted, she asked, "Can we pray for her now?" I replied that we could, and before I could start the prayer, I heard Isabel's little voice begin to pray... (I say "little voice" because when she prays she almost whispers her prayer and sometimes her voice is so light that you can't understand what she says.) But she started out, "Dear God, thank you for our family...*unintelligible*....please help God take away Mary Grace's boo boos and help her grow......Amen." Robert and I looked at each other, I think in disbelief that Isabel had understood the gist of what we just told her and that she had applied it in a prayer without any prompting! What a sweet little blessing and end to the day.
Also I don't know how I missed it, but the responsorial psalm that we sang at church yesterday had an extra verse that I left out in my post accidentally. While Psalm 147 is quite longer than the few verses I posted, I somehow overlooked a significant part that we sang in church, "Glorify the Lord, Jerusalem; Zion, offer praise to your God, Who has strengthened the bars of your gates, blessed your children within you, Brought peace to your borders, and filled you with the finest wheat" Psalm 147:12-14. Wow! Now yesterday's post makes a little more sense why that psalm jumped off the page at me! Thank you Pam, for pointing that out!
Finally, tonight we told Isabel that Mary Grace is sick. I had been rehearsing it in my mind, so I thought it would be easier than it was. Once I told her that we had something we needed to tell her about Mary Grace I paused and for a few seconds the words would just not come out. But then I told her that Mary Grace is sick in Mommy's tummy. I explained that she has boo boos on her body- there is one on her head, boo boos on her hands...Isabel stopped me and told me about when she had a boo boo on her finger. We told her that Mary Grace had a boo boo on her tummy and that she was having a little trouble growing big and strong. I told her that we were going to pray together for God to heal Mary Grace every night before we went to bed and totally unprompted, she asked, "Can we pray for her now?" I replied that we could, and before I could start the prayer, I heard Isabel's little voice begin to pray... (I say "little voice" because when she prays she almost whispers her prayer and sometimes her voice is so light that you can't understand what she says.) But she started out, "Dear God, thank you for our family...*unintelligible*....please help God take away Mary Grace's boo boos and help her grow......Amen." Robert and I looked at each other, I think in disbelief that Isabel had understood the gist of what we just told her and that she had applied it in a prayer without any prompting! What a sweet little blessing and end to the day.
Sunday, February 8, 2009
God's love is perfect and endless.
Today at church I felt like all the readings and songs were speaking to me. I really became lost in God's word. Our responsorial psalm was from Psalm 147:
R. (cf. 3a) Praise the Lord, who heals the brokenhearted.
Praise the LORD, for he is good;
sing praise to our God, for he is gracious;
it is fitting to praise him.
The LORD rebuilds Jerusalem;
the dispersed of Israel he gathers.
R. Praise the Lord, who heals the brokenhearted.
He heals the brokenhearted
and binds up their wounds.
He tells the number of the stars;
he calls each by name.
R. Praise the Lord, who heals the brokenhearted.
Then we sang Eye Has Not Seen and these verses in particular struck me:
Eye has not seen, ear has not heard
what God has ready for those who love Him.
Spirit of love, come give us the mind of Jesus.
Teach us the wisdom of God.
When pain and sorrow weigh us down,
be near to us O Lord.
Forgive the weakness of our faith
and bear us up within Your peaceful word.
Our lives are but a single breath.
We flower and we fade.
Yet all our days are in Your hands
so we return in love what love has made.
Emotion and music are a bad combination for me, and I was pulling out the kleenex right there in our pew. Especially thinking about what it would be like to return Mary Grace to God, so soon after Love had made her.
After church we took Isabel to feed the geese at a local park. We then played on the playground and I watched other families play with their kids...I listened to a mom remind her child to "wait for your sister". It made me wonder how long Isabel would have to wait for a sibling she could play with at a park. I felt like I was in a movie watching everyone else enjoy their happy moments while I was thinking about Mary Grace. I felt guilty for not giving Isabel my full attention while she was proudly digging in the sand.
When Isabel napped today, I tried to do the same. But I can't seem to stop thinking once I lie down and everything is quiet. I feel like I need to be praying in that quiet time for healing, or trying to come up with all the answers to the "what if this happens?" type of questions. It seems like once everything is quiet, that's when my mind has time to focus on all of these thoughts. I was lying there thinking about Abraham in Genesis 18 where he is asking God if he would spare the city of Sodom for just 50 righteous people. Then he keeps pushing a little farther, "How about 45? How about 40? 30? Would you spare it if you found 30 righteous people?" He is so bold to keep asking God...and gets down to 10! "God, if you found just 10 righteous people, would you spare Sodom?" And God agrees.
I started thinking sort of a reverse of that...God, how many people do you need to pray for Mary Grace before you will heal her? Of course, I know that is a ridiculous question to ask! Because I know that God hears my prayer...even if I were the only one praying for this little baby, I know that He hears me. But I kept thinking about it regardless..what if there is one person out there this little girl is supposed to reach and the Lord is waiting until we reach that person? That doesn't mean it is His plan to heal her. But I guess it is my humanly way of trying to do something. If there was a certain number of prayers, a certain number of people I had to reach to save you, I would do it Mary Grace! I would absolutely find a way to heal you so you could be here on earth with us. That is how much I love you...how much Mommy, Daddy and your sister love you! But I know God loves you much more than we ever could. His love is perfect. It is endless. I trust in that as we wait for preliminary test results from the amnio. God's love is perfect and it is endless. Even if we get a diagnosis tomorrow, His love is perfect and it is endless.
Please pray for us tomorrow as we await that phone call for preliminary amnio results...it will tell us if she has a trisomy or not. We are so blessed and thankful for all the outpouring of prayers that we have had...that is why I started this blog, so that everyone could stay updated and know how much we appreciate every thought and prayer that comes our way.
R. (cf. 3a) Praise the Lord, who heals the brokenhearted.
Praise the LORD, for he is good;
sing praise to our God, for he is gracious;
it is fitting to praise him.
The LORD rebuilds Jerusalem;
the dispersed of Israel he gathers.
R. Praise the Lord, who heals the brokenhearted.
He heals the brokenhearted
and binds up their wounds.
He tells the number of the stars;
he calls each by name.
R. Praise the Lord, who heals the brokenhearted.
Then we sang Eye Has Not Seen and these verses in particular struck me:
Eye has not seen, ear has not heard
what God has ready for those who love Him.
Spirit of love, come give us the mind of Jesus.
Teach us the wisdom of God.
When pain and sorrow weigh us down,
be near to us O Lord.
Forgive the weakness of our faith
and bear us up within Your peaceful word.
Our lives are but a single breath.
We flower and we fade.
Yet all our days are in Your hands
so we return in love what love has made.
Emotion and music are a bad combination for me, and I was pulling out the kleenex right there in our pew. Especially thinking about what it would be like to return Mary Grace to God, so soon after Love had made her.
After church we took Isabel to feed the geese at a local park. We then played on the playground and I watched other families play with their kids...I listened to a mom remind her child to "wait for your sister". It made me wonder how long Isabel would have to wait for a sibling she could play with at a park. I felt like I was in a movie watching everyone else enjoy their happy moments while I was thinking about Mary Grace. I felt guilty for not giving Isabel my full attention while she was proudly digging in the sand.
When Isabel napped today, I tried to do the same. But I can't seem to stop thinking once I lie down and everything is quiet. I feel like I need to be praying in that quiet time for healing, or trying to come up with all the answers to the "what if this happens?" type of questions. It seems like once everything is quiet, that's when my mind has time to focus on all of these thoughts. I was lying there thinking about Abraham in Genesis 18 where he is asking God if he would spare the city of Sodom for just 50 righteous people. Then he keeps pushing a little farther, "How about 45? How about 40? 30? Would you spare it if you found 30 righteous people?" He is so bold to keep asking God...and gets down to 10! "God, if you found just 10 righteous people, would you spare Sodom?" And God agrees.
I started thinking sort of a reverse of that...God, how many people do you need to pray for Mary Grace before you will heal her? Of course, I know that is a ridiculous question to ask! Because I know that God hears my prayer...even if I were the only one praying for this little baby, I know that He hears me. But I kept thinking about it regardless..what if there is one person out there this little girl is supposed to reach and the Lord is waiting until we reach that person? That doesn't mean it is His plan to heal her. But I guess it is my humanly way of trying to do something. If there was a certain number of prayers, a certain number of people I had to reach to save you, I would do it Mary Grace! I would absolutely find a way to heal you so you could be here on earth with us. That is how much I love you...how much Mommy, Daddy and your sister love you! But I know God loves you much more than we ever could. His love is perfect. It is endless. I trust in that as we wait for preliminary test results from the amnio. God's love is perfect and it is endless. Even if we get a diagnosis tomorrow, His love is perfect and it is endless.
Please pray for us tomorrow as we await that phone call for preliminary amnio results...it will tell us if she has a trisomy or not. We are so blessed and thankful for all the outpouring of prayers that we have had...that is why I started this blog, so that everyone could stay updated and know how much we appreciate every thought and prayer that comes our way.
Friday, February 6, 2009
Catching up.
How do I begin to get us to the present? My name is Angela and I am married to Robert. We have a precious nearly 3 year old daughter, Isabel, who is the joy of our life! In December of 2007 we got pregnant again, but lost the baby around 7 1/2 weeks due to it being an ovarian ectopic pregnancy. We got pregnant again in April 2008 to miscarry in June of 2008 at 9 1/2 weeks, requiring a D&C. Finally in October 2008 we found out we were expecting again (an answer to many prayers) and due on July 11, 2009, our 6 year wedding anniversary.
This pregnancy had been relatively uneventful and we were excited to make it to our anatomy ultrasound. Isabel (and Rob) had already decided the "new baby in Mommy's tummy" would be a baby girl, a little sister for Isabel. I was excited to find out, because Rob didn't want to "talk names" until we found out the gender.
Wednesday, February 4th, 2009, 17 weeks 4 days
We went to the appointment and they got right down to the ultrasound. Our ultrasound tech had scanned me when I had my ectopic pregnancy almost a year prior, although I'm sure he did not remember. We watched the little baby on the screen wiggle and flex tiny limbs; Isabel was in a sort of silent awe watching everything on the screen. The tech wasn't saying much. It wasn't until Rob commented, "the baby has all it's fingers", that I noticed the first problem was exactly those little fingers. The hand showed splayed fingers which looked like 3 digits and 2 digits fused together, almost like the star-treck hand sign. I wanted to ask the tech right then, but I couldn't bring myself to speak. He moved on to other areas of the body and then I asked, "Is everything looking okay?" He began to give me the "list" of problems starting with those little hands:
"Well, her hands are showing some fusion between her pinky, ring and middle finger and her index and thumb. We don't know if there is webbing between them. It looks as if all the bones are there." He held up his hand to show me what I had already seen on the screen.
"We're also seeing a spot of fluid in her bowels, "significant amounts" of water on the brain; hydrocephalus, and it's measuring about 2 weeks behind in growth," he continued.
Rob and I sat in silence. We looked at each other then back at the screen and the room felt very heavy with the realization that things were appearing very wrong with our baby. It was about 3 minutes later when Isabel broke the silence, "Mommy, can you tell me what we're going to do at Grammy's house?" Bless her heart for speaking because I don't think I would have known what else to say other than to answer that question. "Yes, we're going to play with toys and look for Bailey and Roscoe, but we can't let those two cats fight," trying to clue the tech in on our conversation. "We'll also look for the raccoon and the oppossum when it gets dark, because they'll probably come up on the deck and eat the cat food," I stated. I then turned to the ultrasound tech to explain that my parents live in the mountains, "Hendersonville, near Asheville."
"My wife used to be the director at Camp Pinnacle," he said.
"Camp Pinnacle? Do you know the Bacherts?" I questioned.
"Kelly?" was all he said, with a question.
"Yeah, Kelly."
"I was at her funeral," he said.
"So was I," I was shocked...what a small world for the ultrasound tech who was giving us the worst news of our life to have been at the funeral of a high school girl with whom I had clogged, attended church, and had sleepovers as a child. He was there at her funeral and we had cried together before for the loss of a different life. And there he was to deliver the news that could mean the loss of our baby's life. I was strangely comforted that we had something in common, that he wasn't just a complete stranger telling us about these problems. A blessing.
We met with my favorite OB at the practice...the one I almost always request to see, and the one who knows the story of our losses over the last year so very well. Dr. Segal looked at us so sadly and apologized that this was happening. He scheduled us for an amnio the next morning and when I asked him directly what he thought all these problems "looked like", he responded, "Trisomy 18".
Trisomy 18. I knew from the moment he spoke those words that this was a worst case scenario being played out before us. From my time on the internet's trying-to-conceive message boards, I knew that it was fatal either in utero or shortly after the baby was born. We were in shock most of Wednesday.
Thursday, February 5th, 2008, 17 weeks 5 days
Thursday morning we went to a Women's Specialty Clinic for an ultrasound, amniocentesis and genetic counseling. It took 4 hours. The ultrasound basically confirmed everything we had seen the day before:
Fluid on the brain is called ventriculomegaly, not hydrocephaly...because it is in her ventricles. So much fluid that it is causing her head to be 2 weeks ahead in growth. Her heart looks okay so far, although since her body is measuring 2 weeks behind it is hard to see for sure. The fluid in her bowel (echogenic bowel) is of little consequence...either the doc thinks this is the least of her problems, or I understood him to mean that it was so little fluid it could hardly qualify as noting as echogenic bowel. Finally she would not give us a good shot of her hands, so we could not say much about her finger problems.
We met with the genetic counselor. She is very kind and will help us to make many decisions. We then prepped for the amnio. The tech who prepped me was so very kind and took many 3-D pictures of the baby. He confirmed that she is definitely a she!! (A little sister for Isabel and a second daughter for our family!) His demeanor was the kindest and gentlest of all the people at the clinic....there was just this kindness that was radiating from him. The amnio was very painful and I jumped when the needle pierced my uterus...it was terrible. The needle was in for 2-3 minutes and I said "Hail Mary's" in my head with my arm draped over my eyes. When it was over I felt very faint, but they got me a cold washcloth and then I was okay. The results will take 2 weeks to come back, although we put a rush on a test that would tell us if it is a Trisomy.
I felt great joy after the appointment and that could have only been from the prayers of so so many people...we are so amazed at people who are praying for our baby and for our strength who have never even met us. What an awesome thing. I was joyful to be pregnant...joyful that our baby is a little girl...joyful that she is ours and that she is a precious creation of God, no matter what her problems are.
Thursday night I told Rob that we should really sit down and talk about a baby name. He suggested that we each make a list of names we liked (like we did in choosing Isabel's name). I sat with my pen and paper and only came up with one name, Mary Grace. To my surprise, Robert agreed that that should be her name. He reminded me that I had always been drawn to it from the beginning of the pregnancy- that that was the name I kept coming back to.
Mary Grace. I had wanted to use the name "Mary" because after struggling with our 2 losses last year, and being so eager to be pregnant again, Mom sent a prayer request to Medjugorje where the Blessed Virgin Mary has been allegedly appearing to a group of children (now adults) since 1981. The messages that she gives are for us to convert to her Son....Jesus. Always she tells us that He is the way...and urges us to pray for conversion for the world. She appears monthly with a message and many people send their prayer requests for Mary to take to her Son. Who better to intercede in heaven for you than the mother of Him who could answer our prayer! I know she took our request for a child to Jesus because not 3 days later, I found out we were expecting. I felt like Mary had heard my request, mother to mother, and because of her intercession on our behalf for another child, that child's first name is "Mary".
We chose "Grace", because we know that both she and our family will need the beautiful grace of God to be able to make it through the upcoming times ahead. And when I think of the name/word Grace, I imagine these great beams of light streaming down from heaven...I guess I'm envisioning God's grace flowing directly down from Him to us here on earth. And that is certainly what we need. I had loved this combination since the beginning of our pregnancy and now it has sort of "chosen" us. It feels like this is supposed to be her name.
Not long after we decided on her name, did she start kicking....enough so that I thought Robert might get to feel a kick for the first time! I placed his hand and sure enough, she gave him a little whack! That was confirmation enough for me that she agreed upon our name selection. Not only did we want to bond with her in a special way as soon as we could, it appeared that she was reaching out to bond with us as well.
The last 2 nights I have slept hard. I guess from the emotional exhaustion of the situation. But Friday morning I woke up at 6 a.m. and could not sleep anymore. I lay in bed and replayed the ultrasounds, the findings, trying to remember each ultrasound picture in my mind- looking for additional clues which the doctors might have missed. Trying to think up another explanation for what this could be. I got up and got online and started reading the blog of another mother. One who had lost her precious daughter and how the mother clings to the Father through the entire journey. Her story touched my heart as I realized that we could be following this same path. We are asking for a miracle, but if God doesn't provide a miracle cure for our daughter, she will have a home in heaven...and God will still be our Father. Tears streamed down my face as I read their story and felt the immensity of what is upon us.
Saturday, February 7, 2009, 18 weeks
This morning I woke up and realized I had not felt the baby move in about 24 hours. I realize her body is still small....you don't even start kick counts until 28 weeks, right? But with all that we know, my heart felt panicked. I lay in bed and jiggled my belly like the ultrasound techs had done to get her to move positions. Nothing. I began to pray with an urgency..."Lord, we are not ready yet...we can't have just found out that something is wrong and You take her from us! Please Lord, Jesus!! We are not ready to give her to you!! Give me some movement, show me she is alive in there!" Over and over I prayed...and then I remembered my prayer cloth. If ever there was a time to use this...but before I continue, let me stop and explain.
In Acts 19:11-12 it speaks of how cloths (aprons and handkerchiefs) were touched to Peter and Paul and taken back to the sick who were often cured of their ills..."God wrought special miracles by the hands of Paul; so that from his body were brought unto the sick handkerchiefs or aprons, and the diseases departed from them, and the evil spirits went out of them." We know that objects in and of themselves are powerless! Faith is the basis of this devotion and God can empower whom He wills. He is the ultimate Healer and unlimited in His resources for healing! The prayer cloth I have is used to focus or funnel my faith toward Jesus, much like a flag is used as a focus point of patriotism.
So I placed it over my belly and began to pray for this baby...that God would heal her completely. I went through each of her ailments and asked for specific healing over each body part. I told God that I wanted His will to be done, but I begged for His will to be to save her. I talked to God about her name, told Him about her big sister who was so eager to hold her, I reminded Him (hah...me reminding the Father) of all the miracles Jesus performed...as many healings as I could think of from the Bible. What an awesome thing if we went back into that next ultrasound in 3 weeks and all of her problems were healed! I prayed and prayed, and as I prayed, I felt her move inside of me. She began to move and move...almost as if she knew that those prayers were for her and she was joining in! She moved that entire hour of prayer and I was never so grateful.
This pregnancy had been relatively uneventful and we were excited to make it to our anatomy ultrasound. Isabel (and Rob) had already decided the "new baby in Mommy's tummy" would be a baby girl, a little sister for Isabel. I was excited to find out, because Rob didn't want to "talk names" until we found out the gender.
Wednesday, February 4th, 2009, 17 weeks 4 days
We went to the appointment and they got right down to the ultrasound. Our ultrasound tech had scanned me when I had my ectopic pregnancy almost a year prior, although I'm sure he did not remember. We watched the little baby on the screen wiggle and flex tiny limbs; Isabel was in a sort of silent awe watching everything on the screen. The tech wasn't saying much. It wasn't until Rob commented, "the baby has all it's fingers", that I noticed the first problem was exactly those little fingers. The hand showed splayed fingers which looked like 3 digits and 2 digits fused together, almost like the star-treck hand sign. I wanted to ask the tech right then, but I couldn't bring myself to speak. He moved on to other areas of the body and then I asked, "Is everything looking okay?" He began to give me the "list" of problems starting with those little hands:
"Well, her hands are showing some fusion between her pinky, ring and middle finger and her index and thumb. We don't know if there is webbing between them. It looks as if all the bones are there." He held up his hand to show me what I had already seen on the screen.
"We're also seeing a spot of fluid in her bowels, "significant amounts" of water on the brain; hydrocephalus, and it's measuring about 2 weeks behind in growth," he continued.
Rob and I sat in silence. We looked at each other then back at the screen and the room felt very heavy with the realization that things were appearing very wrong with our baby. It was about 3 minutes later when Isabel broke the silence, "Mommy, can you tell me what we're going to do at Grammy's house?" Bless her heart for speaking because I don't think I would have known what else to say other than to answer that question. "Yes, we're going to play with toys and look for Bailey and Roscoe, but we can't let those two cats fight," trying to clue the tech in on our conversation. "We'll also look for the raccoon and the oppossum when it gets dark, because they'll probably come up on the deck and eat the cat food," I stated. I then turned to the ultrasound tech to explain that my parents live in the mountains, "Hendersonville, near Asheville."
"My wife used to be the director at Camp Pinnacle," he said.
"Camp Pinnacle? Do you know the Bacherts?" I questioned.
"Kelly?" was all he said, with a question.
"Yeah, Kelly."
"I was at her funeral," he said.
"So was I," I was shocked...what a small world for the ultrasound tech who was giving us the worst news of our life to have been at the funeral of a high school girl with whom I had clogged, attended church, and had sleepovers as a child. He was there at her funeral and we had cried together before for the loss of a different life. And there he was to deliver the news that could mean the loss of our baby's life. I was strangely comforted that we had something in common, that he wasn't just a complete stranger telling us about these problems. A blessing.
We met with my favorite OB at the practice...the one I almost always request to see, and the one who knows the story of our losses over the last year so very well. Dr. Segal looked at us so sadly and apologized that this was happening. He scheduled us for an amnio the next morning and when I asked him directly what he thought all these problems "looked like", he responded, "Trisomy 18".
Trisomy 18. I knew from the moment he spoke those words that this was a worst case scenario being played out before us. From my time on the internet's trying-to-conceive message boards, I knew that it was fatal either in utero or shortly after the baby was born. We were in shock most of Wednesday.
Thursday, February 5th, 2008, 17 weeks 5 days
Thursday morning we went to a Women's Specialty Clinic for an ultrasound, amniocentesis and genetic counseling. It took 4 hours. The ultrasound basically confirmed everything we had seen the day before:
Fluid on the brain is called ventriculomegaly, not hydrocephaly...because it is in her ventricles. So much fluid that it is causing her head to be 2 weeks ahead in growth. Her heart looks okay so far, although since her body is measuring 2 weeks behind it is hard to see for sure. The fluid in her bowel (echogenic bowel) is of little consequence...either the doc thinks this is the least of her problems, or I understood him to mean that it was so little fluid it could hardly qualify as noting as echogenic bowel. Finally she would not give us a good shot of her hands, so we could not say much about her finger problems.
We met with the genetic counselor. She is very kind and will help us to make many decisions. We then prepped for the amnio. The tech who prepped me was so very kind and took many 3-D pictures of the baby. He confirmed that she is definitely a she!! (A little sister for Isabel and a second daughter for our family!) His demeanor was the kindest and gentlest of all the people at the clinic....there was just this kindness that was radiating from him. The amnio was very painful and I jumped when the needle pierced my uterus...it was terrible. The needle was in for 2-3 minutes and I said "Hail Mary's" in my head with my arm draped over my eyes. When it was over I felt very faint, but they got me a cold washcloth and then I was okay. The results will take 2 weeks to come back, although we put a rush on a test that would tell us if it is a Trisomy.
I felt great joy after the appointment and that could have only been from the prayers of so so many people...we are so amazed at people who are praying for our baby and for our strength who have never even met us. What an awesome thing. I was joyful to be pregnant...joyful that our baby is a little girl...joyful that she is ours and that she is a precious creation of God, no matter what her problems are.
Thursday night I told Rob that we should really sit down and talk about a baby name. He suggested that we each make a list of names we liked (like we did in choosing Isabel's name). I sat with my pen and paper and only came up with one name, Mary Grace. To my surprise, Robert agreed that that should be her name. He reminded me that I had always been drawn to it from the beginning of the pregnancy- that that was the name I kept coming back to.
Mary Grace. I had wanted to use the name "Mary" because after struggling with our 2 losses last year, and being so eager to be pregnant again, Mom sent a prayer request to Medjugorje where the Blessed Virgin Mary has been allegedly appearing to a group of children (now adults) since 1981. The messages that she gives are for us to convert to her Son....Jesus. Always she tells us that He is the way...and urges us to pray for conversion for the world. She appears monthly with a message and many people send their prayer requests for Mary to take to her Son. Who better to intercede in heaven for you than the mother of Him who could answer our prayer! I know she took our request for a child to Jesus because not 3 days later, I found out we were expecting. I felt like Mary had heard my request, mother to mother, and because of her intercession on our behalf for another child, that child's first name is "Mary".
We chose "Grace", because we know that both she and our family will need the beautiful grace of God to be able to make it through the upcoming times ahead. And when I think of the name/word Grace, I imagine these great beams of light streaming down from heaven...I guess I'm envisioning God's grace flowing directly down from Him to us here on earth. And that is certainly what we need. I had loved this combination since the beginning of our pregnancy and now it has sort of "chosen" us. It feels like this is supposed to be her name.
Not long after we decided on her name, did she start kicking....enough so that I thought Robert might get to feel a kick for the first time! I placed his hand and sure enough, she gave him a little whack! That was confirmation enough for me that she agreed upon our name selection. Not only did we want to bond with her in a special way as soon as we could, it appeared that she was reaching out to bond with us as well.
The last 2 nights I have slept hard. I guess from the emotional exhaustion of the situation. But Friday morning I woke up at 6 a.m. and could not sleep anymore. I lay in bed and replayed the ultrasounds, the findings, trying to remember each ultrasound picture in my mind- looking for additional clues which the doctors might have missed. Trying to think up another explanation for what this could be. I got up and got online and started reading the blog of another mother. One who had lost her precious daughter and how the mother clings to the Father through the entire journey. Her story touched my heart as I realized that we could be following this same path. We are asking for a miracle, but if God doesn't provide a miracle cure for our daughter, she will have a home in heaven...and God will still be our Father. Tears streamed down my face as I read their story and felt the immensity of what is upon us.
Saturday, February 7, 2009, 18 weeks
This morning I woke up and realized I had not felt the baby move in about 24 hours. I realize her body is still small....you don't even start kick counts until 28 weeks, right? But with all that we know, my heart felt panicked. I lay in bed and jiggled my belly like the ultrasound techs had done to get her to move positions. Nothing. I began to pray with an urgency..."Lord, we are not ready yet...we can't have just found out that something is wrong and You take her from us! Please Lord, Jesus!! We are not ready to give her to you!! Give me some movement, show me she is alive in there!" Over and over I prayed...and then I remembered my prayer cloth. If ever there was a time to use this...but before I continue, let me stop and explain.
In Acts 19:11-12 it speaks of how cloths (aprons and handkerchiefs) were touched to Peter and Paul and taken back to the sick who were often cured of their ills..."God wrought special miracles by the hands of Paul; so that from his body were brought unto the sick handkerchiefs or aprons, and the diseases departed from them, and the evil spirits went out of them." We know that objects in and of themselves are powerless! Faith is the basis of this devotion and God can empower whom He wills. He is the ultimate Healer and unlimited in His resources for healing! The prayer cloth I have is used to focus or funnel my faith toward Jesus, much like a flag is used as a focus point of patriotism.
So I placed it over my belly and began to pray for this baby...that God would heal her completely. I went through each of her ailments and asked for specific healing over each body part. I told God that I wanted His will to be done, but I begged for His will to be to save her. I talked to God about her name, told Him about her big sister who was so eager to hold her, I reminded Him (hah...me reminding the Father) of all the miracles Jesus performed...as many healings as I could think of from the Bible. What an awesome thing if we went back into that next ultrasound in 3 weeks and all of her problems were healed! I prayed and prayed, and as I prayed, I felt her move inside of me. She began to move and move...almost as if she knew that those prayers were for her and she was joining in! She moved that entire hour of prayer and I was never so grateful.
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