I have had a lot of people asking me about the prenatal surgery that we may be embarking on in the next few weeks. First of all, I am learning as I go, so I am sure many of the details will become clearer in the next few weeks. Since 2003, the surgery was only performed in three locations in the US. Between 2003-2010 the surgery was only offered as a research trial. It was a randomized surgery which meant that couples who wanted to have it had to first qualify, agree to it, and then a computer decided if they were chosen for prenatal or postnatal surgery. There were lots of restrictions on the women who had the surgery because of the nature of the study. For example, after the surgery they had to remain in the hospital vicinity for the remainder of the pregnancy. I am so glad that the trial ended with positive results indicating beneficial results from the prenatal surgery this past December. In fact, the medical journal was just published in February of this year. I am so thankful for the 183 women who participated in this trial, while not knowing what the outcome would be. They definitely gave up a lot and paved they way for others to be able to have this done in the future.
When I am pregnant I am very conservative with everything that I eat and drink! I barely take two regular Tylenol unless I am dying (and I know that they are totally 100% fine to take). So the thought of having major surgery on my baby and uterus while pregnant is a crazy thought to me. In fact, until a few weeks ago I didn't even realize that this was a possibility. (I mean a doctor won't even touch the ugly and very painful varicose vain on the back of my right leg until I am no longer pregnant....but they will perform a major surgery!!!) Needless to say... my thinking is changing!
From what I have learned, the surgery is about a three hour procedure. I will be completely out....thank you Lord. They will hopefully be able to do a low hip to hip incision and....brace yourself....then they take the uterus completely out of the abdominal cavity. They somehow drain all of the amniotic fluid from that precious little sac and and then carefully pinpoint the placenta. They have to make sure the incision is no where near it. Right now my placenta is in the front so they will likely make the uterine incision on the back side of the uterus. They expose the baby enough to get to the back and they delicately close up the spina bifida lesion. They return the baby back into the uterus and close it back up . They add back all the amniotic fluid into the uterus and then return the uterus into my abdominal cavity. Then I would get sewed back up and very carefully monitored. That monitoring would include lots of meds to prevent contractions for the remainder of the pregnancy.
I would be in the hospital for about 5 days and then have to stay close by for while longer until I clear the post-opt appt. At that point, I can return home and do my very best to take it easy for the remaining weeks of my pregnancy. Their goal would be to get me to 34/35 weeks which is crazy early to me, but pre-term delivery is probably the largest risk from the surgery. If I made it to 37 weeks they would do a C-section then. Needless to say, Eli will most likely not be an August baby!
This is definitely not what I had planned for Eli or for our summer. I was so looking forward to beach and pool days now that my girls are older this year. Each day at some point, I start thinking that maybe we shouldn't have the surgery and just do it post-delivery. The surgery definitely is making life more stressful in all directions: financially, emotionally, physically....and it pretty much puts my life on hold for the next two or three months. Then I start thinking about Eli and although I don't know him yet and I cannot even picture his sweet little face in my mind....I know I am his mother. I think of Samuel, Ella, and Eliza. I know that from the first moment I laid my eyes on them that my love for them was immediate!! I think of how if Ella or Eliza ever had any physical problem that I as their mother could physically do something about....I would without a single thought or question of the sacrifice. I would do ANYTHING I could!!! I know that I will feel the same for Eli. Although we haven't yet looked into each others eyes and I've yet to whisper I love yous into his baby ears...I know that I will. So, despite my fears and concerns, I must do all I can to give him the best chance at life. Thank you for your continued prayers.
Wednesday, March 30, 2011
Tuesday, March 29, 2011
Ultrasound
When I think back on who I was on November 7th, 2005, I see a young 25 year old girl who was nothing but excited, presumptious, and unscathed. Until that day, the most devestating event in my young life was the death of my beloved grandfather when I was ten. This day was the day that I first felt vunerable to the wiles of this life. The first time I experienced the unfairness of life and that my life specifically wasn't going to always go as I wished.
Today when the same "older" couple sits anxiously in a doctor's office awaiting an ultrasound, we are anything but presumptious. We are hopeful, but not presumptious. I think we are at the point that we just brace ourselves. I must say if you have been so very blessed to only experience the many joys of pregnancy, (minus the nausea, exhaustion, and a few other unpleasant experiences) it truely is a blessing. What I would give to have that experience.
Today we had yet another ultrasound. We got the head ultrasound man, an ultrasound tech and a resident. Apparently he was there mainly to teach the other two some of the things to look for in a spina bifida case. Lovely!!! He also apparently had very little concern to the fact that I was about to shake off the table. I think somewhere in there he told me I just needed to relax. He spoke in medical jargon and was not interested in filling us in on what he was looking at over and over. Granted I have had so many ultrasounds that I know a lot of what they are looking at and looking for....but I didn't like one bit that he wasn't giving us any comforting words along the way.
We did learn that Eli's lesion appears to be a little higher on his spine than what they orignally thought. This is not good. The lower it is, is always better. The higher it is, generally there is less function in what below. I am still going to pray that they are wrong. We probably won't know for sure until after the surgery or maybe even until after he is born and he has an MRI. So we definitely feel like we need to progress with the prenatal surgery plan for now unless the Lord closes the door.
We did get good news that so far his feet are not clubbed. Although that can still happen, it hasn't yet. Also his ventricles are not really that enlarged yet, so that is good. I know it will most likely occur at some point, but hey I will take anything good.
These words continue to ring through my head. (2 Cor. 4:7-10)
"We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves. We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. Through suffering, our bodies continue to share in the death of Jesus so that the life of Jesus may also be seen in our bodies."
Today when the same "older" couple sits anxiously in a doctor's office awaiting an ultrasound, we are anything but presumptious. We are hopeful, but not presumptious. I think we are at the point that we just brace ourselves. I must say if you have been so very blessed to only experience the many joys of pregnancy, (minus the nausea, exhaustion, and a few other unpleasant experiences) it truely is a blessing. What I would give to have that experience.
Today we had yet another ultrasound. We got the head ultrasound man, an ultrasound tech and a resident. Apparently he was there mainly to teach the other two some of the things to look for in a spina bifida case. Lovely!!! He also apparently had very little concern to the fact that I was about to shake off the table. I think somewhere in there he told me I just needed to relax. He spoke in medical jargon and was not interested in filling us in on what he was looking at over and over. Granted I have had so many ultrasounds that I know a lot of what they are looking at and looking for....but I didn't like one bit that he wasn't giving us any comforting words along the way.
We did learn that Eli's lesion appears to be a little higher on his spine than what they orignally thought. This is not good. The lower it is, is always better. The higher it is, generally there is less function in what below. I am still going to pray that they are wrong. We probably won't know for sure until after the surgery or maybe even until after he is born and he has an MRI. So we definitely feel like we need to progress with the prenatal surgery plan for now unless the Lord closes the door.
We did get good news that so far his feet are not clubbed. Although that can still happen, it hasn't yet. Also his ventricles are not really that enlarged yet, so that is good. I know it will most likely occur at some point, but hey I will take anything good.
These words continue to ring through my head. (2 Cor. 4:7-10)
"We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves. We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. Through suffering, our bodies continue to share in the death of Jesus so that the life of Jesus may also be seen in our bodies."
Monday, March 28, 2011
Gloomy
Today was such a gloomy, cold and wet day on the outside, but it it was also a gloomy day for me on the inside. Just being real here...today I am just sad. This morning I decided to go through some of our baby clothes to see if we had any that were gender neutral. As I went through my boxes of all our cute little girl stuff, I just felt so sad and frustrated. Frustrated that this is most likely our very last baby and all of those special little clothes will remain boxed up. I don't know if I will ever be able to part with them. Each little outfit holds such special memories to me. I felt frustrated that this is probably my last pregnancy and it is such a hard one. Any excitement and happiness seems to be overpowered by the unknowns. Instead of enjoying this time as much as possible, I am just trying to get through. To be honest, I am sad that our Eli will be special needs child. I am sad that he will be different from the other kids in the nursery. I am sad that he will come into the world with MRI's, ultrasounds, therapies, and such waiting for him. I am mad that being healthy and taking those expensive prescription prenatals for five years didn't prevent this. I am just being honest.
I have spent some time reading blogs of moms who have young kids with spina bifida. They are both overwhelming and encouraging. Most of them agree that the hardest time when having a child with spina bifida is the pregnancy. I know that once I see our little Eli that I will fall so in love with him that I will be willing to move heaven and earth to be the best mommy I can to him. It is just hard to be there right now.
After losing Samuel, I really struggled with the fear of losing another child. I think I was constantly waiting for the sky to fall again. In the beginning, every little sickness with Ella, was so scary to me. I am not sure I really slept much her entire first year because I was so scared of SIDS. Over the years the Lord and I have worked through this fear. I have learned that every sickness isn't something major and that I have to give my fear of another loss to the Lord. I know Eli is going to challenge me in an entire new way.
We have another ultrasound tomorrow. Please join us in praying that we will receive some good news.
I have spent some time reading blogs of moms who have young kids with spina bifida. They are both overwhelming and encouraging. Most of them agree that the hardest time when having a child with spina bifida is the pregnancy. I know that once I see our little Eli that I will fall so in love with him that I will be willing to move heaven and earth to be the best mommy I can to him. It is just hard to be there right now.
After losing Samuel, I really struggled with the fear of losing another child. I think I was constantly waiting for the sky to fall again. In the beginning, every little sickness with Ella, was so scary to me. I am not sure I really slept much her entire first year because I was so scared of SIDS. Over the years the Lord and I have worked through this fear. I have learned that every sickness isn't something major and that I have to give my fear of another loss to the Lord. I know Eli is going to challenge me in an entire new way.
We have another ultrasound tomorrow. Please join us in praying that we will receive some good news.
Sunday, March 27, 2011
the weekend
We had a great weekend spending time together as a family and getting some things done around the house. One of my favorite things to do is work in our yard and plant flowers. Each spring we take one Saturday to get the yard looking good after letting it go throughout the fall and winter. We get up early head to Lowe's. I pick out the flowers and ferns and Kev gets the fertilizer, mulch, and such. It is always a lot of work, but I love the immediate result you get from a better looking yard. Don't get me wrong this is about the only day of the year that I do yardwork!! I do water and take care of my flowers. Normally somewhere around July it gets so hot and I get so tired of watering them....that they die!
Saturday night we had a great meal with some friends. We had kabobs, this wonderful bread and homemade creme puffs. They were one of the best things I've eaten in a long time. It was great to be around such sweet friends and to enjoy such yummy food after working so hard all day!
Today was a great day at church. We are so blessed to have such a wonderful church family praying for us.
We have our next appointment on Tuesday for another ultrasound. It should be more telling as to exactly where the site of the lesion is and also if there has been a change in the size of his ventricles and any other changes. We are praying for miracles and leaving the results up to God.
I am not sure if I posted this, but late last week we heard from Vanderbilt and our consult and surgery are scheduled in a few short weeks. This is all dependent on the outcome of Tuesday's ultrasound and the consultation visit. We also found out on Friday that the price of the surgery is a lot...$68,000 and our insurance company is saying that they will not cover it. The research trial on the surgery just ended a few months ago and the journal was only published in February. Patients are just now beginning to have the surgery and needing coverage and we are some of the lucky ones to be first. We are praying that they will change their minds and approve it. We will have to agree to the surgery not knowing what the outcome of their decision will be. We are praying that they will see that this is no longer experimental surgery and will cover the procedure.
Thank you all who are reading my little blog and praying for us. I was shocked tonight at church when several of the older ladies told me that they were all reading it. I appreciate everyone who is walking along on this journey with us and I am praying that we will all see the Lord do great and wonderful things in the life of our little, tiny Eli.
Saturday night we had a great meal with some friends. We had kabobs, this wonderful bread and homemade creme puffs. They were one of the best things I've eaten in a long time. It was great to be around such sweet friends and to enjoy such yummy food after working so hard all day!
Today was a great day at church. We are so blessed to have such a wonderful church family praying for us.
We have our next appointment on Tuesday for another ultrasound. It should be more telling as to exactly where the site of the lesion is and also if there has been a change in the size of his ventricles and any other changes. We are praying for miracles and leaving the results up to God.
I am not sure if I posted this, but late last week we heard from Vanderbilt and our consult and surgery are scheduled in a few short weeks. This is all dependent on the outcome of Tuesday's ultrasound and the consultation visit. We also found out on Friday that the price of the surgery is a lot...$68,000 and our insurance company is saying that they will not cover it. The research trial on the surgery just ended a few months ago and the journal was only published in February. Patients are just now beginning to have the surgery and needing coverage and we are some of the lucky ones to be first. We are praying that they will change their minds and approve it. We will have to agree to the surgery not knowing what the outcome of their decision will be. We are praying that they will see that this is no longer experimental surgery and will cover the procedure.
Thank you all who are reading my little blog and praying for us. I was shocked tonight at church when several of the older ladies told me that they were all reading it. I appreciate everyone who is walking along on this journey with us and I am praying that we will all see the Lord do great and wonderful things in the life of our little, tiny Eli.
Thursday, March 24, 2011
Mothering
Today we got good news that we did qualify for a consult visit at Vanderbilt for prenatal surgery. While that is great news...it immediately sent my nerves flying and my stomach twisted and tied up in knots. The time-frame that they gave us for our consult and tentative surgery date is somewhat sooner than we were hoping. While so many are so excited for us that we have this opportunity....I keep thinking of what it really is going to mean for me and our little family!
I have such mixed emotions. While I want to do everything I possibly can to give Eli the greatest chance at having the best quality of life...I feel so torn between this and my two precious girls. The thought of not being able to care for them as I do kills me. I am their mommy. Caring for them is my daily, full-time job. We have a routine. We have a schedule. I am their main disciplinarian. Daddy is too, but I am just with them so much more. I know when they haven't had enought to drink or when they need more veggies to eat. I know when ella needs to potty and when elliza wants her blankie. I know where bunny is at all times and I make sure that their ears get cleaned each night and their teeth get flossed. It is just part of my job. I can tell when eliza throws her blankie out of her crib from the sound of her cry and when ella is frustrated due to being tired. I know their quirks and what makes them tick and I love being their mommy!
As a mommy it is hard to take a seat or should I say "a bed" to your job. My three short weeks of bedrest with Eliza right at the end was hard enough....I cannot imagine months.
There is a lot to consider. Will the high risk of pre-term labor be worth the risk of risky surgery? Would we be causing more issues for Eli by a pre-term delivery than if we let him grow and wait for the surgery? All of these questions have no clear-cut answers, but we are praying for wisdom that the Lord will lead us to what is best for Eli and our family.
We went out to dinner tonight. Kev was still at the table paying and I walked the girls into the lobby to wait. They were about maxed out on good behavior! We were waiting and the two young (18ish oir so), female hostesses looked at us and said. "Awe...they are so precious!" I said, " thank you." Then they began talking to each other. It went something like this.....I wanna have a baby! They are so so sweet. I want to have a baby bump and be so cute!! It took all I had in me to not give those girls a quick little reality look into what pregnancy can sometimes look like. I quickly composed myself and walked out thinking that they were so clueless about the sacrifice that it takes to be a mother. (I do not fault them...I used to be there too!) It is so much more than a cute family or sporting a baby bump for a few months. It requires so very much more!!
I have such mixed emotions. While I want to do everything I possibly can to give Eli the greatest chance at having the best quality of life...I feel so torn between this and my two precious girls. The thought of not being able to care for them as I do kills me. I am their mommy. Caring for them is my daily, full-time job. We have a routine. We have a schedule. I am their main disciplinarian. Daddy is too, but I am just with them so much more. I know when they haven't had enought to drink or when they need more veggies to eat. I know when ella needs to potty and when elliza wants her blankie. I know where bunny is at all times and I make sure that their ears get cleaned each night and their teeth get flossed. It is just part of my job. I can tell when eliza throws her blankie out of her crib from the sound of her cry and when ella is frustrated due to being tired. I know their quirks and what makes them tick and I love being their mommy!
As a mommy it is hard to take a seat or should I say "a bed" to your job. My three short weeks of bedrest with Eliza right at the end was hard enough....I cannot imagine months.
There is a lot to consider. Will the high risk of pre-term labor be worth the risk of risky surgery? Would we be causing more issues for Eli by a pre-term delivery than if we let him grow and wait for the surgery? All of these questions have no clear-cut answers, but we are praying for wisdom that the Lord will lead us to what is best for Eli and our family.
We went out to dinner tonight. Kev was still at the table paying and I walked the girls into the lobby to wait. They were about maxed out on good behavior! We were waiting and the two young (18ish oir so), female hostesses looked at us and said. "Awe...they are so precious!" I said, " thank you." Then they began talking to each other. It went something like this.....I wanna have a baby! They are so so sweet. I want to have a baby bump and be so cute!! It took all I had in me to not give those girls a quick little reality look into what pregnancy can sometimes look like. I quickly composed myself and walked out thinking that they were so clueless about the sacrifice that it takes to be a mother. (I do not fault them...I used to be there too!) It is so much more than a cute family or sporting a baby bump for a few months. It requires so very much more!!
Wednesday, March 23, 2011
The God of the Unrepairable!!!
Last Saturday I wanted to get out of the house for a while and so I headed over to our local outlet mall. I had a gift card that has been burning a hole in my wallet since Christmas and since I am at that less than desirable stage in pregnancy where I don't quite need maternity clothes, but I just look.... chunky, I decided some new shirts might do me some good.
I found a cute teal shirt at the Banana Republic that was on sale and with my additional coupon it was really cheap! I put it on that afternoon and wore it for a few hours. At some point during those few hours I washed a load of white clothes. I am a little obsessed with bleach! I like my whites white!!! Well, leave it to me to not pour carefully and later I noticed that I had lime green splatters ALL over my brand new teal shirt! I was so bummed and came upstairs and showed Kev. I think he laughed because it wasn't the first time this has happened. I was mostly bummed because I'd gotten about two hours of wear out of it! I think somewhere in his laughter he promised to buy me another one!!
Today is Wednesday and this morning I was going through our clean laundry looking for something that would work for today. On top of the pile I found my new teal shirt and I hadn't even realized that I had washed and dried it. I grabbed it and decided to re-evaluate it to see if it was really as bad as I had remembered. When I looked at it....I didn't see a single lime green spot! I brought it upstairs to look at it in a better light and once again there where no bleach spots. I decided to iron it because surely the heat of the iron would make the spots show up....but it didn't. Now I have had several bleach accidents before, but I have never had this happen!!
It was in that moment that I felt the gentle Holy Spirit speak into my heart and say, "Julie, I AM the God of the unrepairable. I CAN repair that which is not meant to be fixed." The Holy Spirit's gentle words to my heart were like a balm for my spirit. I felt refreshed. I felt known by God. I felt as though He was at work in our lives.
This evening we got a call from our Genetic Counselor who gave us the great news that Eli's has 46 perfectly normal chromosomes. She said she was surprised and that it didn't really go along with what they know to be true medically speaking, but she was so pleased for us.
I am so relieved and so thankful. So thankful tonight for the many, many, many faithful friends who have been praying for us and so thankful that we might be getting to have a baby in a few short months!! We still have a long road ahead of us, but I will never forget that my God is the God who can Repair that which is Unrepairable. And I am really glad to get to wear my new teal shirt again too!
I found a cute teal shirt at the Banana Republic that was on sale and with my additional coupon it was really cheap! I put it on that afternoon and wore it for a few hours. At some point during those few hours I washed a load of white clothes. I am a little obsessed with bleach! I like my whites white!!! Well, leave it to me to not pour carefully and later I noticed that I had lime green splatters ALL over my brand new teal shirt! I was so bummed and came upstairs and showed Kev. I think he laughed because it wasn't the first time this has happened. I was mostly bummed because I'd gotten about two hours of wear out of it! I think somewhere in his laughter he promised to buy me another one!!
Today is Wednesday and this morning I was going through our clean laundry looking for something that would work for today. On top of the pile I found my new teal shirt and I hadn't even realized that I had washed and dried it. I grabbed it and decided to re-evaluate it to see if it was really as bad as I had remembered. When I looked at it....I didn't see a single lime green spot! I brought it upstairs to look at it in a better light and once again there where no bleach spots. I decided to iron it because surely the heat of the iron would make the spots show up....but it didn't. Now I have had several bleach accidents before, but I have never had this happen!!
It was in that moment that I felt the gentle Holy Spirit speak into my heart and say, "Julie, I AM the God of the unrepairable. I CAN repair that which is not meant to be fixed." The Holy Spirit's gentle words to my heart were like a balm for my spirit. I felt refreshed. I felt known by God. I felt as though He was at work in our lives.
This evening we got a call from our Genetic Counselor who gave us the great news that Eli's has 46 perfectly normal chromosomes. She said she was surprised and that it didn't really go along with what they know to be true medically speaking, but she was so pleased for us.
I am so relieved and so thankful. So thankful tonight for the many, many, many faithful friends who have been praying for us and so thankful that we might be getting to have a baby in a few short months!! We still have a long road ahead of us, but I will never forget that my God is the God who can Repair that which is Unrepairable. And I am really glad to get to wear my new teal shirt again too!
Tuesday, March 22, 2011
18 Months
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18 Months ago today we started the day like this! |
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| And a few hours later.... |
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| We had you...our sweet little Eliza Anne! |
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| From day one you were the cutest and sweetest little thing! |
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| The days with you in our lives have been so great. |
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| How did you go from this little pumpkin to such a sweet little girl? |
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| You are fun! |
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| You are silly! |
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| You are agreeable to your sissy's schemes. |
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| You are cautious. |
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| You are special. |
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| You are the sweetest little thing this side of heaven. |
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| But watch out world...she's got some mad climbing skills! (And just for the record, she was disciplined and removed just following the picture.) |
I find myself today longing to go back and relive the past 18 months with Eliza as a baby! I long to go back and have a normal exciting pregnancy and a happy delivery day! I remember when I was pregnant with eliza wondering how I could really love another little girl as much as I did our ella. For she had helped to heal and repair such a piece of our hearts, that I really wondered if it would be the same. I am so thankful that God knows what we need the most. I couldn't have picked a better compliment to our family and to ella than eliza. She is so different from her sissy, but is so equally loved and unique. I will never forget riding home in our van for the first time with two carseats in the back and feeling like the luckiest woman in the world. Thank you Lord for the blessing of Eliza.
Monday, March 21, 2011
Waiting
We are still waiting to hear the results of our amnio from last week. I am not sure when we will hear. Most likely it will be this week, but it could even be next Monday before we know. Every single time our home phone rang today my stomach flip-flopped and I braced myself for who might be on the other end. No such news for today. In one aspect I will be glad to just know exactly what we are facing, but on the other hand if it is not good news...I'd rather just sit where I am for a bit longer.
I got up early and went walking today with my exercise buddy (Whitney). We had been faithfully running 5-6 days a weeks for about four months. I was starting to feel like I was really getting back in good shape and was really enjoying running. We would run at 6:15am before our kids or husbands left for work. It was a sacrifice to get up early and get out the door, but I was always so thankful I did it when it was over. I even continued to run through most of my first trimester, which I have never done before. When life gets crazy things like exercise and trying not to "gain" more pregnancy pounds than needed don't really seem to be that important to me. I decided that I might not have too many weeks left that I can even get out of the bed or a sitting position, so I better make the most of the days I can. It felt good to get up and get my day going early again today.
Today is my little sister's 25th birthday!! I always liked being older than her until now!! I am already into my 30's and she gets to only be mid 20's!! That sounds so much better! Jess, we love you and hope you have had a great day. Your package is on it's way!!
I got up early and went walking today with my exercise buddy (Whitney). We had been faithfully running 5-6 days a weeks for about four months. I was starting to feel like I was really getting back in good shape and was really enjoying running. We would run at 6:15am before our kids or husbands left for work. It was a sacrifice to get up early and get out the door, but I was always so thankful I did it when it was over. I even continued to run through most of my first trimester, which I have never done before. When life gets crazy things like exercise and trying not to "gain" more pregnancy pounds than needed don't really seem to be that important to me. I decided that I might not have too many weeks left that I can even get out of the bed or a sitting position, so I better make the most of the days I can. It felt good to get up and get my day going early again today.
Today is my little sister's 25th birthday!! I always liked being older than her until now!! I am already into my 30's and she gets to only be mid 20's!! That sounds so much better! Jess, we love you and hope you have had a great day. Your package is on it's way!!
Friday, March 18, 2011
Friday
Last night after I wrote the previous post, as I was mopping our dirty hardwood floors, it came to me. What I really was trying to say is that what I really want is just "the good life." I often say I want God's will for my life, but probably what I really want is a good, happy, healthy life that God approves of. I don't know why I expect it to be this way as there is a lot in the Bible about "laying down one's life," "taking up one's cross," "dying to self," and suffering. It is through these things that we are conformed more into the likeness of Christ.
Today has been a sad day for me. I have felt very weepy at times and scared. I know without a single doubt that I will love Eli as much as I love my two little cuties who are fast asleep upstairs, but right now I am struggling to feel connected to him. I am scared to love him. I am scared to lose him. I am scared about all that is to come.
We are still waiting on our final amnio results. We hope they will be back at the beginning of the week. All of my medical records are being evaluated at Vanderbuilt, as they are trying to decided if we could even qualify for the prenatal surgery. When I was 35 weeks pregnant with Eliza I was diagnosed with IUGR. The doctors are carefully evaluating her pregnancy and the placental pathology reports to see if this might disqualify us. With the surgery, one of the biggest risks is preterm labor. On average babies are generally born about 8-10 weeks following the surgery.
If we get good results on the amnio, I will have an ultrasound in about a week and a half and we would leave for Vanderbuilt a few days later for our consult. No lie, this surgery scares me to death. I read tonight that it is a hip to hip incision followed by strict bed rest for 3 weeks. The remaining portion of the pregnancy would be moderate bed rest. I would most likely be in a wheelchair if we went out of the house for any period of time. Needless to say, if we do have the surgery, this summer is going to look very different for our family.
I know it would be a sacrifice . The thought of being away from my girls for a while and not being able to pick them up and hold them just about kills me. Eliza follows me around the house with her arms up in the air for mommy to hold her. She is still so tiny and needs her mommy! Ella is more independent but understands so much more. She will be worried and will not do good being out of our routine. Needless to say, I want to enjoy every second of holding them, lifting them, and being on the go with them, while I can.
If you want to pray for us here are a few specifics: good amnio results, that God's will would be done concerning the surgery and what would be best for Eli, Kevin's job situation that something local with his same company would open in another dept., for Kevin's class load (he has mid-terms this week and is taking four seminary classes this semester which is a heavy load with everything else he does!!) Thank you
Julie
Today has been a sad day for me. I have felt very weepy at times and scared. I know without a single doubt that I will love Eli as much as I love my two little cuties who are fast asleep upstairs, but right now I am struggling to feel connected to him. I am scared to love him. I am scared to lose him. I am scared about all that is to come.
We are still waiting on our final amnio results. We hope they will be back at the beginning of the week. All of my medical records are being evaluated at Vanderbuilt, as they are trying to decided if we could even qualify for the prenatal surgery. When I was 35 weeks pregnant with Eliza I was diagnosed with IUGR. The doctors are carefully evaluating her pregnancy and the placental pathology reports to see if this might disqualify us. With the surgery, one of the biggest risks is preterm labor. On average babies are generally born about 8-10 weeks following the surgery.
If we get good results on the amnio, I will have an ultrasound in about a week and a half and we would leave for Vanderbuilt a few days later for our consult. No lie, this surgery scares me to death. I read tonight that it is a hip to hip incision followed by strict bed rest for 3 weeks. The remaining portion of the pregnancy would be moderate bed rest. I would most likely be in a wheelchair if we went out of the house for any period of time. Needless to say, if we do have the surgery, this summer is going to look very different for our family.
I know it would be a sacrifice . The thought of being away from my girls for a while and not being able to pick them up and hold them just about kills me. Eliza follows me around the house with her arms up in the air for mommy to hold her. She is still so tiny and needs her mommy! Ella is more independent but understands so much more. She will be worried and will not do good being out of our routine. Needless to say, I want to enjoy every second of holding them, lifting them, and being on the go with them, while I can.
If you want to pray for us here are a few specifics: good amnio results, that God's will would be done concerning the surgery and what would be best for Eli, Kevin's job situation that something local with his same company would open in another dept., for Kevin's class load (he has mid-terms this week and is taking four seminary classes this semester which is a heavy load with everything else he does!!) Thank you
Julie
Thursday, March 17, 2011
Good Days
Today has been a good day. The girls and I got out a bit today, they are back on their regular eating/napping schedules, and life seems to be calming down a bit for now. I told a few friends today that I am not sure if I am numb or just have God's peace because I just kinda feel like...okay! That is such a blessing to be able to be okay in the midst of life's trials. I don't for even a second want you to think that I am not and have not been worried over all that we have on our plate right now, but I kinda feel like we are at a place where God has to show up and get some glory!!! Relying on Christ is pretty much our only option and that is a good place to be.
Lately, I have been thinking a lot about blessings and what generally, we as Americans, look to as God blessing us. I am very guilty of desiring a beautiful house, beautiful kids dressed in the cutest fashions, two cars, 3 healthy kids involved in sports and the arts...balanced of course with active church involvement, and maybe even a white picket fence to finish off the package. It seems as we strive for what society and ourselves attribute as the perfect family and when we get there we see it as "being blessed by God." So much that we see as blessings are health and wealth.
I think the contrary is very true as well. When we fall upon hard times, when tragedy and heartache come into our lives, when we are faced with hard choices and disappointing circumstances and our pretty little white fence falls right over....we are often shocked. I am preaching to myself here!! Why am I shocked when hard times are part of this life? Why do we expect it to all go as we planned? Why do we question Him and His character?
I woke up this morning early and laid in bed for a long time. If I let my mind start going I get way overwhelmed and in way over my head. As thankful that I am for our preliminary good news on the FISH test, I begin to worry that maybe I have given everyone false hope and may have to in a few days be faced with not so good news again. Then my mind wanders to the next six weeks, which may possibly include surgery for both Eli and myself, time aways from home, hubs off of work from a job that is ending, and I begin to panic. Then I begin to worry about Eli and I wonder if I will be a good mommy to a boy. They are so different from little girls. Will I be able to manage his care while taking care of my girls? I worry about him getting picked on as he grows and the bathroom issues associated with Spina bifida. I worry that he may not be able to get married or be a daddy himself one day! My mind easily runs to all the things that I in my own strength really cannot handle.
Lately, I have been thinking a lot about blessings and what generally, we as Americans, look to as God blessing us. I am very guilty of desiring a beautiful house, beautiful kids dressed in the cutest fashions, two cars, 3 healthy kids involved in sports and the arts...balanced of course with active church involvement, and maybe even a white picket fence to finish off the package. It seems as we strive for what society and ourselves attribute as the perfect family and when we get there we see it as "being blessed by God." So much that we see as blessings are health and wealth.
I think the contrary is very true as well. When we fall upon hard times, when tragedy and heartache come into our lives, when we are faced with hard choices and disappointing circumstances and our pretty little white fence falls right over....we are often shocked. I am preaching to myself here!! Why am I shocked when hard times are part of this life? Why do we expect it to all go as we planned? Why do we question Him and His character?
It is like we know that life will have trials, but we really don't think they will ever find us. Or we think we have been through a major trial in the past and that surely should get us some kind of pass card for at least the next ten years! ( I really think that I felt like I had some kind of check mark on my card that said, "difficult pregnancy/death of child" Passed in 2006!) I know that might sound crazy, but in my mind I felt like I was probably covered on that one!
The older I get I am realizing that life is just hard. In every life some rain must fall and sometimes it is acquainted with thunder and lightening (thanks dad!) I feel like the Lord is teaching me once again that He doesn't operate as this "world" does. He doesn't give check marks for trials and he doesn't send blessings in proportion to faithfulness and hardwork. His goal is always to reveal himself. His plan is to refine our faith and change us into his likeness. His ways though they sometimes lead you along very unchosen paths, are always the ones in which you find Him. It is only in Him do we really find real "life."
Thanks for bearing with me as I struggle and question my way through. The Lord is teaching me a lot.
Tuesday, March 15, 2011
One day at a time!
What a day! Seems like everyday lately has been like that! First of all, we got some awesome potential news on Eli. When they did the amnio they also did the FISH test. It screens for Tri. 13, 18, 21 and maybe a few other of the most common chromosome problems. You can get the results back a lot sooner than the actual amnio. The genetic counselor called and when I answered I could her in her voice that it must be good news. She said that the FISH test came back normal showing no additional 13th, 18th, or 21st chromosomes. She was very happy with that and of course we were too. This is not a guarantee as we have to wait on the amnio as it will test for many other problems, many which are much more rare. But we were so THANKFUL to get a little good news.
I began frantically texting and calling Kevin. I even texted him that I had some results and to please call. He didn't and I figured he was with a customer and would call me right back. I kept calling and finally he called back. He told me to sit down. I knew something was up! He then told me that he was in a meeting and just found out that his office, the one in which he's been employed with for almost ten years, is closing as of June 25, 2011. He office has had talk of closing for years but it is no longer talk...it is for real! It definitely was a huge blow! He has until 5:00 pm of next Tues. the 22nd to turn in a paper agreeing to transfer to one of six locations in the the Southeast. Insurance is going to be vital to us in the coming months...esp. if Eli only has spina bifida with potential prenatal surgery, delivery, nicu stay, possible shunt surgery, and all that would go along with that. It is not a good time to not have insurance and not have a job. It is also not a great time to move to a completely new location with no family, church or friends to lean on. There is so much on our minds this evening that to be honest we just feel numb.
In the one hand we are ecstatic that we might actually be having a baby!!! On the other hand we feel overwhelmed with Kevin's job site closing and and the big decisions to make in a week. It is really more than we can discern right now and are asking God for wisdom as He says to ask and He will give it.
Thank you so much for your prayers for Eli. I really think that the Lord is answering our prayers for him! You never think you would be so glad to say that my baby might only have spina bifida....but tonight we are so thankful for that. I am praying for good results next week.
I promise you that our lives are not normally this eventful, dramatic and crazy! I long for the days when I will once again sit at the computer and have nothing at all to blog about. Until then we will continue to seek God's will one day at a time.
I began frantically texting and calling Kevin. I even texted him that I had some results and to please call. He didn't and I figured he was with a customer and would call me right back. I kept calling and finally he called back. He told me to sit down. I knew something was up! He then told me that he was in a meeting and just found out that his office, the one in which he's been employed with for almost ten years, is closing as of June 25, 2011. He office has had talk of closing for years but it is no longer talk...it is for real! It definitely was a huge blow! He has until 5:00 pm of next Tues. the 22nd to turn in a paper agreeing to transfer to one of six locations in the the Southeast. Insurance is going to be vital to us in the coming months...esp. if Eli only has spina bifida with potential prenatal surgery, delivery, nicu stay, possible shunt surgery, and all that would go along with that. It is not a good time to not have insurance and not have a job. It is also not a great time to move to a completely new location with no family, church or friends to lean on. There is so much on our minds this evening that to be honest we just feel numb.
In the one hand we are ecstatic that we might actually be having a baby!!! On the other hand we feel overwhelmed with Kevin's job site closing and and the big decisions to make in a week. It is really more than we can discern right now and are asking God for wisdom as He says to ask and He will give it.
Thank you so much for your prayers for Eli. I really think that the Lord is answering our prayers for him! You never think you would be so glad to say that my baby might only have spina bifida....but tonight we are so thankful for that. I am praying for good results next week.
I promise you that our lives are not normally this eventful, dramatic and crazy! I long for the days when I will once again sit at the computer and have nothing at all to blog about. Until then we will continue to seek God's will one day at a time.
Monday, March 14, 2011
My Little Spots of Sunshine!!
I just have to say that I am honored and blessed by so many friends and strangers who care enough for us to intercede on our behalf. All I can do is sit and cry as I have seen friend after friend ask their friends on facebook and in real life to pray for us. Thank you so much. I woke up this morning reminded of the power of prayer. First of all I slept soundly through the night. Even at only 17 weeks, I always make at least two bathroom trips each night. It is just par for the course when you are pregnant. I couldn't believe it when I woke up to the sound of our alarm this morning. I got up and got ready feeling pretty relaxed and at peace. That my friends...was such a blessing.
We got to the office right at 8 am for my scheduled amniocentesis. This is something I said I would never do because there is a "risk" involved. We often learn to eat our words...as I didn't have too much for an option at this point. The way they do it is to get insurance approval first...you pay ahead your portion and then you are seen. It took an hour and fifteen minutes to get done with insurance. But thankfully we do have pretty decent insurance, which is a blessing. Then we had to wait another 30 min. to be called back. By that point I was getting very anxious. So about two hours later we finally were back for the procedure. The doctor was great, Eli did well and although it was a little painful and I feel pretty crampy now...it is over. It was one step in this journey and one we (I) had to get through. I feel very relieved that it is over.
Thank you for your prayers!
We got to the office right at 8 am for my scheduled amniocentesis. This is something I said I would never do because there is a "risk" involved. We often learn to eat our words...as I didn't have too much for an option at this point. The way they do it is to get insurance approval first...you pay ahead your portion and then you are seen. It took an hour and fifteen minutes to get done with insurance. But thankfully we do have pretty decent insurance, which is a blessing. Then we had to wait another 30 min. to be called back. By that point I was getting very anxious. So about two hours later we finally were back for the procedure. The doctor was great, Eli did well and although it was a little painful and I feel pretty crampy now...it is over. It was one step in this journey and one we (I) had to get through. I feel very relieved that it is over.
I thought this blog could use a little sunshine today, as it is a beautiful spring day in our neck of the woods.
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| So thankful for these two sillies! |
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| Ella workin out! |
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| Eliza "Shopping" |
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| A pretty day at the park! |
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| Eliza's first pigtails...you may need a magnifyer to see them! |
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| Somtimes shopping gets dangerous! |
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| Sweet and silly ella! |
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| Eliza's silly smile |
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| Night time snuggles and silly Eliza! |
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| Nothing sweeter!! |
Sunday, March 13, 2011
The odds
Kev forgot to change his alarm or I guess he really didn't forget...he just assumed his cell phone would automatically update the new time. We don't normally have to worry because our girls are generally pretty good alarm clocks for us. We woke up a little late but still made it in time for most of the service. Eliza has had a tiny little cold and started running a little fever. Normally, I would have stayed at home from church with her in this case, but today we just felt like we really needed to be there. We just kept her with us and to be honest I don't either one of us minded having a little extra snuggle time with her.
A lot of times when we are hurting we want to retreat from life and those around us. I do this. I know we learned from last time how much we need to be around those who love us and those who are praying for us. It was good to be in the house of the Lord today.
The odds....
I have been thinking a lot about the odds that we have been given this past week and also given in the past. In one sense it blows my mind that our odds are so....terrible. In the other sense it makes me realize that God is really at work in our lives (for the lack of a better word) in an odd way.
Samuel died of bilateral mutlicystic dysplastic kidneys. The odds of this happening in a pregnancy is 1 per 10,000! It is not genetic and happens sporadically. It is more common in caucasions and a little more common in boys than girls. It is lethal if it is bilateral. It does often occur to just one kidney and the occurance of that is 1 in 4,300. In that case the child generally is healthy due to one healthy functioning kidney. The reoccurance rate in future pregnancies is about 1%.
Research shows that birth defects like Spina Bifida occur in 7 out of every 10,000 live births in the United States. We were told that 95% of neural tube defects occur in families where there is no family history of such problems. It is most common among hispanic and white women. Shockingly, we were told that our state has the highest incidence of Spina Bifida cases in the entire U.S., with our portion of the state containing the most. This blew my mind. The CDC has been investigating this for years and has found no reasoning...although I am convinced there must be one!
Trisomy 18 is caused by a chromosomal defect. It occurs in 1 out of 6000 births. 50-60%of babies who are carried to term are born stillborn and less than 10% survive to their first birthday. There is no way to prevent it and the reoccurance rate in future pregnancies is about 1%.
So what is the odds of having a child with both Spina Bifida and Trisomy 18. Apparently about 6% of babies with Trisomy 18 also have Spina Bifida as well as many other health problems.
I just wonder what the odds would be of having a child with Bilateral Multi-cystic Dysplastic Kidneys and then a child with Trisomy 18 and Spina Bifida. I am sure we will find out soon but, I am guessing the odds are pretty rare. Kev said that IF we were gambling folks now would be the time to buy a lottery ticket!
I can't for the life of me just conceive that this is all a terrible cosmic accident or some cruel sentence brought on by an unloving God or even the case that Kevin and I just have some really crummy genes (although that one might be easier to swallow). I know and believe enough to know that God doesn't just mess up and that he doesn't send calamaity into our lives for fun. I can hold to the fact that I have seen God bring great joy and direction into our lives from the loss of our son Samuel. In many ways his death has shaped our path these last few years.
Never in my wildest dreams would I have believed that we might walk back through such a difficult pregncncy. I don't know what God has planned for little Eli, but I guarentee there is a purpose and a plan for him...either on earth or in heaven. I once again say with Mary, when the angel brought her the news of the coming Savior, "I am the Lord's servant and I am willing to accept whatever he wants." Luke 1:38
A lot of times when we are hurting we want to retreat from life and those around us. I do this. I know we learned from last time how much we need to be around those who love us and those who are praying for us. It was good to be in the house of the Lord today.
The odds....
I have been thinking a lot about the odds that we have been given this past week and also given in the past. In one sense it blows my mind that our odds are so....terrible. In the other sense it makes me realize that God is really at work in our lives (for the lack of a better word) in an odd way.
Samuel died of bilateral mutlicystic dysplastic kidneys. The odds of this happening in a pregnancy is 1 per 10,000! It is not genetic and happens sporadically. It is more common in caucasions and a little more common in boys than girls. It is lethal if it is bilateral. It does often occur to just one kidney and the occurance of that is 1 in 4,300. In that case the child generally is healthy due to one healthy functioning kidney. The reoccurance rate in future pregnancies is about 1%.
Research shows that birth defects like Spina Bifida occur in 7 out of every 10,000 live births in the United States. We were told that 95% of neural tube defects occur in families where there is no family history of such problems. It is most common among hispanic and white women. Shockingly, we were told that our state has the highest incidence of Spina Bifida cases in the entire U.S., with our portion of the state containing the most. This blew my mind. The CDC has been investigating this for years and has found no reasoning...although I am convinced there must be one!
Trisomy 18 is caused by a chromosomal defect. It occurs in 1 out of 6000 births. 50-60%of babies who are carried to term are born stillborn and less than 10% survive to their first birthday. There is no way to prevent it and the reoccurance rate in future pregnancies is about 1%.
So what is the odds of having a child with both Spina Bifida and Trisomy 18. Apparently about 6% of babies with Trisomy 18 also have Spina Bifida as well as many other health problems.
I just wonder what the odds would be of having a child with Bilateral Multi-cystic Dysplastic Kidneys and then a child with Trisomy 18 and Spina Bifida. I am sure we will find out soon but, I am guessing the odds are pretty rare. Kev said that IF we were gambling folks now would be the time to buy a lottery ticket!
I can't for the life of me just conceive that this is all a terrible cosmic accident or some cruel sentence brought on by an unloving God or even the case that Kevin and I just have some really crummy genes (although that one might be easier to swallow). I know and believe enough to know that God doesn't just mess up and that he doesn't send calamaity into our lives for fun. I can hold to the fact that I have seen God bring great joy and direction into our lives from the loss of our son Samuel. In many ways his death has shaped our path these last few years.
Never in my wildest dreams would I have believed that we might walk back through such a difficult pregncncy. I don't know what God has planned for little Eli, but I guarentee there is a purpose and a plan for him...either on earth or in heaven. I once again say with Mary, when the angel brought her the news of the coming Savior, "I am the Lord's servant and I am willing to accept whatever he wants." Luke 1:38
Saturday, March 12, 2011
Minute by Minute...
I don't even really know what to say except I am trying to hang in there. This week by far has been probably the hardest of my life. I really felt that nothing could be worse than when we received Samuel's diagnosis on Nov. 7, 2005. But the rollercoaster of this week compounded with the awareness that in all reality I may be walking this really hard path once again, is almost more than I can handle.
Over and over I keep thinking that this is a terrible nightmare. One I know all too well. I can honestly say that I generally am a good pregnant person: I have little nausea, try to complain little about the discomforts, I have short/easy deliveries, I am a good pusher, I breastfeed... although I can't say it is a joyful process for me, and I am never more thankful than when I am pushed out of the hospital with that baby in my arms. It makes it worth it all.
For someone who for the most part enjoys being pregnant, I HATE IT!!!! There is nothing worse than something major going wrong in your pregnancy and there is nothing you can do about it. It is like your body majorly betrays you. There is nothing worse than gaining 30 or more pounds, feeling uncomfortable in your own body, having your milk come in, deliver a baby, all to be pushed out of the hospital empty handed. I cannot believe I may have to do this again. There is no joy in this.
I know this blog is turning into a terribly depressing one. In reality, I need a place to sort out my feelings other than in my head. To have to endure it once was hard, it was life-changing in a good way, it was a journey, it was God's plan. To go through it again...I can hardly even imagine. I know the only way to get through it is day by day, but right now I am going more minute by minute.
Over and over I keep thinking that this is a terrible nightmare. One I know all too well. I can honestly say that I generally am a good pregnant person: I have little nausea, try to complain little about the discomforts, I have short/easy deliveries, I am a good pusher, I breastfeed... although I can't say it is a joyful process for me, and I am never more thankful than when I am pushed out of the hospital with that baby in my arms. It makes it worth it all.
For someone who for the most part enjoys being pregnant, I HATE IT!!!! There is nothing worse than something major going wrong in your pregnancy and there is nothing you can do about it. It is like your body majorly betrays you. There is nothing worse than gaining 30 or more pounds, feeling uncomfortable in your own body, having your milk come in, deliver a baby, all to be pushed out of the hospital empty handed. I cannot believe I may have to do this again. There is no joy in this.
I know this blog is turning into a terribly depressing one. In reality, I need a place to sort out my feelings other than in my head. To have to endure it once was hard, it was life-changing in a good way, it was a journey, it was God's plan. To go through it again...I can hardly even imagine. I know the only way to get through it is day by day, but right now I am going more minute by minute.
Friday, March 11, 2011
REALLY????
The past few day s I have been riding waves of fear, sadness and then hope and encouragements. Yesterday I began to feel more optimistic concerning Eli's future. We spent the morning getting transcripts and medical records sent and requested to Vanderbilt. I felt like we were making progress. THEN, we got a phone call from our genetic counselor.
Some of the blood work that was being tested returned with a very concerning result. I don't even think I can explain it but the geneticist is very concerned that we might be dealing with another issue on top of Spina Bifida. Specifically they are thinking it is Trisomy18. This is NOT good news as trisomy 18 is a lethal condition somewhat similar to what Samuel had. I am scheduled for an amnio (which I am dreading terribly) on Monday morning at 8:00 and we should have some results by Tues and then a final report in about 10 days.
About 5 minutes prior to the phone call I had just taken a small plastic box out of my closet which contained 3 onesies and 2 bibs for a baby boy. These were some of the very few things I purchased 5 years ago before we knew about Samuel. For a few brief moments I began to get excited about the idea that I would finally be having a baby boy to fill them.
I have had about all that I can take for the moment and I just want to bury my head and escape from all of this. Each morning I am waking up thinking...is this really real?
I am thankful for our two little busy bodies who haven't a worry or concern in the world right now. You do not know how thankful I am to have been able to have two healthy children. At this point our odds are not looking so good. I assure you that eventually I will be at a better place than I am right now....but it is what it is.
Some of the blood work that was being tested returned with a very concerning result. I don't even think I can explain it but the geneticist is very concerned that we might be dealing with another issue on top of Spina Bifida. Specifically they are thinking it is Trisomy18. This is NOT good news as trisomy 18 is a lethal condition somewhat similar to what Samuel had. I am scheduled for an amnio (which I am dreading terribly) on Monday morning at 8:00 and we should have some results by Tues and then a final report in about 10 days.
About 5 minutes prior to the phone call I had just taken a small plastic box out of my closet which contained 3 onesies and 2 bibs for a baby boy. These were some of the very few things I purchased 5 years ago before we knew about Samuel. For a few brief moments I began to get excited about the idea that I would finally be having a baby boy to fill them.
I have had about all that I can take for the moment and I just want to bury my head and escape from all of this. Each morning I am waking up thinking...is this really real?
I am thankful for our two little busy bodies who haven't a worry or concern in the world right now. You do not know how thankful I am to have been able to have two healthy children. At this point our odds are not looking so good. I assure you that eventually I will be at a better place than I am right now....but it is what it is.
Thursday, March 10, 2011
Processing
Today we are processing lots of new information concerning our various options for Eli. There has been a medical trial going on since Feb. of 2003 to repair spinal lesions through prenatal surgery. The trial just ended and the journal was just published in Feb. of this year. All of the information is new and quite overwhelming. Basically, they had two groups of participants, some of who had surgery done between 19 and 26 weeks and then another group who had repair surgery following delivery around 37 weeks. They compared their findings at 12 months and then again at 30 months.
The intrauterine surgery involves opening the mother up...I was thinking C-section but was told it was a good bit larger. They remove the unborn baby, placing it on the mother's stomach, while leaving the placenta and all intact. They repair the sight on the baby and then return the baby back inside it's mommy's tummy for another 10-12 weeks (hopefully) to grow. Doesn't that just sound.....I do not even have words!!!! Maybe incredible, exciting, amazing....until it is your belly and your baby!!!!
There are definite risks involved to both baby and mother. This surgery is offered in three locations in the US. The closest to us would be at Vanderbuilt. We would have to travel for a consult and lots of tests and then if all went well and we qualified, we'd have the surgery and remain there for two weeks.
We have lots of questions and concerns, but most of all we are praying for wisdom so that we can discern what God would have us do. We want to make the best decision for Eli so that he can have the best quality of life that we can offer him. We have to decide in the next 3 weeks. Whew!!!
My dad sent me this link. It is a very one of the more hopeful and optimistic outcomes. I tried to post the video and couldn't so here is the link if you are intersted.
http://abcnews.go.com/WNT/video/surgery-womb-spina-bifida-prenatal-cure-experimental-birth-deffect-12879423
Julie
The intrauterine surgery involves opening the mother up...I was thinking C-section but was told it was a good bit larger. They remove the unborn baby, placing it on the mother's stomach, while leaving the placenta and all intact. They repair the sight on the baby and then return the baby back inside it's mommy's tummy for another 10-12 weeks (hopefully) to grow. Doesn't that just sound.....I do not even have words!!!! Maybe incredible, exciting, amazing....until it is your belly and your baby!!!!
There are definite risks involved to both baby and mother. This surgery is offered in three locations in the US. The closest to us would be at Vanderbuilt. We would have to travel for a consult and lots of tests and then if all went well and we qualified, we'd have the surgery and remain there for two weeks.
We have lots of questions and concerns, but most of all we are praying for wisdom so that we can discern what God would have us do. We want to make the best decision for Eli so that he can have the best quality of life that we can offer him. We have to decide in the next 3 weeks. Whew!!!
My dad sent me this link. It is a very one of the more hopeful and optimistic outcomes. I tried to post the video and couldn't so here is the link if you are intersted.
http://abcnews.go.com/WNT/video/surgery-womb-spina-bifida-prenatal-cure-experimental-birth-deffect-12879423
Julie
Wednesday, March 9, 2011
Meet Eli!
Thank you all so much for your prayers for our family. The past two days have been a whirlwind nightmare. This morning we had an early appointment downtown at the "big" hospital. Really it isn't at a hospital, but rather a clinic nearby. It is a clinic that I have visited before and hoped to never need to return. The whole time I sat there I kept thinking that I could not believe that we are back.
It took forever to get the paperwork filled out and then to get insurance stuff approved prior to being seen. We had a long ultrasound where we got to see little Eli moving all around. I found myself loving him more and more as I watched him. Feelings of fear and anger seemed to fall away as I saw him. The findings were the same as yesterday. He does indeed have Spina Bifidia. The doctor that we saw was informative and direct. She said that having these two major incidents of birth defects, which are totally unrealated, is like getting struck by lightening twice in the same lifetime. She told us we'd been struck and she was so sorry. We prayed before we went in as we always do that God would give us opportunities today to proclaim His name. I once again have found my boldness. People listen when life comes crashing. I told her, "Why not us!" God has blessed us so much with family, a wonderful church and a strong faith in Him. As much as I wish it wasn't us....I know that God has a plan for us.
Then we met with the genetic counselor who was our genetic counselor last time. She said that when she got the call yesterday about our appt. today she knew our names immediately. She was as kind and informative as last time. We shared with her how God had blessed our family in the five years since we'd last met and how God had used it in our lives in a big way. Kevin told her that he was now in seminary and that our loss had given us new direciton in life. I sinced that she too was a believer.
We learned so much that my head is swimming. I admit that I knew very little about Spina Bifidia before yesterday. Eli's spinal problem is at the lower part of his spine. It will most likely affect his bladder, bowels, legs, feet and walking. He will have daily issues that we will have to learn to manage. Of course, the extent of this will be determined after birth as he grows. Our lives have changed forever.
He will have to have surgery. We would appreciate your prayers concerning this. There is a possibility of him having an interuterine surgery prior to birth. It would be risky and would be major surgery for me as well. It is pricey and in another state. We have a lot of options to weigh and a lot more information to aquire in the next ten weeks...(which is the time frame in which it would have to be done.)
If not, he will have surgery or surgeries following his birth and will have a NICU stay as he heals. We were told that we would leave the hospital with lots of appointments. Thankfully, there is a spinia bifidia clinic right in our very town where many of the services are provided. Our daily life has changed forever.
My heart is scared. I miss my girls already and the normalcy that our lives had just two days ago. I know that in a few short months their little lives will be forever changed as well. I know they will both be great big sissy's. But,....their little lives are changed forever.
Once again, we thank you all for your prayers and kind words. Last night I couldn't sleep and I went back to the book of Job. If you feel like having a pity party for yourself, Job is a good place to start. He lost it all and really just wanted God to kill him. Chapter after Chapter and God is silent...and finally in Chapter 38 God speaks. Pretty much he says to brace yourself and for the next 3 chapters God displays both his authority and his power. It left me as it left Job feeling both humbled and repentant. Surely even though our lives might be changed forever, He remains unchanged.
Tuesday, March 8, 2011
Again...
What does one say when in a matter of minutes their world turns upside down? What does one say when their forever is changed? How does one respond to devastation, shock, and disappointment? I should know...I have played this part before.
We are expecting our 4th well technically 5th(due to a miscarriage) baby! This baby was a shock to the system. I found out two days before Christmas at my routine yearly check-up! I had no clue. I had been running a lot and trying hard to get in shape and just figured it had changed my cycle a little. After all it took a year of serious trying and 3 infertility treatments to get one of our sweetie's here. It has always been a journey and we'd always tried before. Never in my wildest dreams would we have gotten pregnant when we were "preventing." it. Things like that just don't happen to us or so we thought!
It wasn't like we didn't want more kids...or I should say one more kid. We always have but for the first time in a long time I felt such a contentment with where we were! I am busy with my girls. I love being a mom of two girls and I am just thankful to have them both. So when we found out that we were in fact expecting and the initial shock wore off...we were thrilled.
Due to our history we never share our pregnancies early. In fact, if it were up to me I might just wait until I delivered and had that baby in my arms to make the announcement. Unfortunately, my body kind of gives it away after a few months. I generally like to wait until after we get to a certain place...past our full anatomy scan to scream it from the mountain tops.
Today was our day! Kev had the day off. We got up early and took the girls for doughnuts which is a big treat at our house. Daddy went with me to take them to Mother's Morning Out at our church and we had plans for a nice lunch date out to celebrate following our appointment.
My stomach was a mess. I had been to the bathroom more times than I could count, which is not anything abnormal for me prior to ultrasounds. They have that affect on me. They can be life-altering. I know this all too well and so does my body! I sweat like it is the middle of summer, yet I am freezing like I need a coat. My poor husband...he is so sweet and always calms me down...or tries too!
As I laid on the table today my fears began to subside as I saw ample fluid around my baby. I saw that he measured perfectly at where he should. His heart was beating and she quickly checked for kidneys! Check...check...and check! Then we saw that he was a boy! A boy!! Finally, our little Eli...who weighed about 5 ounces! I think we both felt nervous and excited about a boy...such a change from having a house of girls.
Then the ultrasound lady was pretty much done and then she kept scanning his spine over and over. I wasn't even nervous. I had finally relaxed and figured she just need a few more angles. Then she said, "I am concerned about the base of his spine." In a matter of seconds my heart was pounding in my chest. She said she needed to get my doctor and wanted to let the other ultrasound girl take a look. That is never a good sign. I sat there squeezing the hand beside me....the strong hand that I have squeezed through more hard times than I wish to count.
It didn't take too long for them to agree that our little Eli has spina bifidia. Seriously!!! How does one have 4 children with two of them having completely separate, non- related, serious, major, birth defects. Spina Bifidia has never once been a concern. I am the girl who has remained on her prescription prenatal vitamins packed with folic acid for the past 5 years. They are a sacrifice of us because they are 40 dollars a month for a vitamin.
I sit here 7 hours later trying to process the events of the day, wanting so badly to wake-up from this nightmare. Feeling in shock. I feel mad that I have to go back to the "Big" hospital tom. and meet with a genetic counselor. I mean, we have done this all before. Really, do we have to do it again. I feel scared about what we will face....death, severe disabilities. I feel completely inadequate to do this again. I am questioning why us. I am sad for Kevin that having a son just doesn't seem to work like we would like. My head is aching, my eyes are swollen and I've eaten far too many doughnuts holes to count today.
I will not doubt in my God and His ability to carry us through whatever we face. I have experienced Him. I have tasted and known He is Good . I just didn't want to face this. I heard the song above yesterday for the first time. I hope it will encourage you as it has me.
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