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
 |
18 Months ago today we started the day like this! |
 |
| And a few hours later.... |
 |
| We had you...our sweet little Eliza Anne! |
 |
| From day one you were the cutest and sweetest little thing! |
 |
| The days with you in our lives have been so great. |
 |
| How did you go from this little pumpkin to such a sweet little girl? |
 |
| You are fun! |
 |
| You are silly! |
 |
| You are agreeable to your sissy's schemes. |
 |
| You are cautious. |
 |
| You are special. |
 |
| You are the sweetest little thing this side of heaven. |
 |
| 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.
Subscribe to:
Posts (Atom)