I sit here tonight with a room full of all the people I love most in my life. Everyone is fast asleep in dreamland and I am loving all the snores and grunts coming from each of them. I tell you, I am nothing but a hot mess today....and in hot I do not mean "Hot." I mean a crying, emotional mess. Honestly, I have never considered myself to be a very emotional person. I cry at weddings. I have cried each time I have first seen the faces of my three children. I sometimes shed a tear or two at a very sad movie. But if I ever really start...it is hard for me to stop. Today has been one of those times in my life.
In my mind over and over I keep thinking, what if this were my last day to live? What if this was my last night to show love to my family and snuggle my sweet girls? What if this was my last chance to tell them about Jesus or to have shared with those around me what Christ means to me?
Don't get me wrong, I am not planning on anything drastic happening tomorrow, but my heart is so full of emotions tonight.
We had our pre-opt appointment today and we got a tour of the L&D floor, where I will be resting for the next several days. I saw one poor woman walking the halls stopping and bearing her head into her husband, obviously very much in labor. Normally, I would have felt sorry for as she breathed through her contractions, but not today. In fact, I really wish we were arriving tomorrow to have a baby....I do know I can do that and it is so much better than this.
They gave me these strange wipe like things that I have to use tonight to wipe down my stomach. There are all these detailed directions to them, like you have to wait one hour after your shower to use them. You cannot use and lotions, deod., make-up, or etc. You have to attach the label to a form and return it to the hospital saying that you followed the directions. I have to admit it is making me a little freaked out. I guess the purpose is to reduce the amount of germs on your body, and since I am a little germ conscience anyways (esp. with hotels and hospitals) I am a little freaked out by this. I mean....how much scrubbing should one do? :)
We have been so showered with love from our church family and friends. We have enough food here to last us a month. Seriously, we didn't even have to go to a store today to get a thing!! It has been such a blessing. We sincerely thank you!
So, tomorrow morning bright and early little Eli's nice, dark and cozy little world will be interrupted by doctor's, nurses, bright lights and even his very first shot. Our fetal coordinator who is also a nurse practitioner will be in the surgery as well. She will be calling Kevin throughout the surgery to give him updates. She will also be taking a picture of little Eli's back for us prior to the repair. That will be about all of him that we should be able to see, but I cannot believe we will even get to see that much.
Please pray for us tom. Please feel free to ask anyone who you know loves the Lord to also pray for us. We covet your prayers and feel confident that the ultimate healer will be there in the midst with us tomorrow.
Monday, April 18, 2011
Friday, April 15, 2011
Daily life pictures
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| They are so silly! |
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| Ella and her babies. |
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| Mommy's Girls! |
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| Little Liza! |
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| About two weeks ago at 20 weeks prego with little Eli. |
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| Mess Makers!! |
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| Sweet little Friends! |
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| Hey, this thing doesn't go! |
Thursday, April 14, 2011
Home!!!
We arrived back home this morning from a whirlwind trip. Yesterday we had our consult visit for our prenatal surgery. Our appointment was at 9am. We easily found our way and arrived early. I knew I had lots of people praying for us because I was so calm. That is not totally the norm for me prior to a big appointment and I was so thankful. The staff and everyone we met were so incredibly nice. They were very accommodating with a "care cart" full of snacks and drinks.
The appointment began with a nice long ultrasound for well over an hour. They carefully inspected every single part of Eli's little, tiny body. The ultrasound tech was wonderful. It was a much better experience than some we've had in the past. Eli did really well. Every other body part checked out perfectly other than the spina bifida related problems. Thankfully so far he does not have hydrocephalus. His ventricles measured 6.1 and 6.5 which are still well within the normal limits. They do expect them to increase as the pregnancy continues. His cerebellum does show signs of hindbrain herniation and they agreed that his lesion level is at L5. This is typical with SB. We are praying this will improve after the surgery. We also learned that he weighs a whopping 14oz. and is going normally.
After the ultrasound we went into a little room and from 10:15 until 3:00 we had back to back meetings with 9 different doctors, surgeons and specialist. I mean we barely had a minute or two between each person, It was really organized and all the doctors came right to us. The only problem was that we got so hungry that we thought we were going to die. I finally sent Kev after that "care cart" and that was a godsend.
We learned so much, got lots of information and many questions answered. They laid it all out there for us and weighed the very real risks with the possible advantages for choosing to undergo pre-natal surgery. It was pretty surreal to talk at length with the "world renowned prenatal surgeons." It was also very humbling to meet the surgeons who will in a few short days be operating on myself as well as our little Eli. When Dr. Tulipan came in I have to admit I almost cried. He is a surgeon who has dedicated his life to this surgery and although he was very matter of fact, it was amazing to meet someone whose hands in a few days, would be touching our unborn baby.
Before we left we gave them our verbal commitment and the surgery is scheduled. I can't say that I am excited. I am terrified! I feel like this is the best decision we can make for our family and most importantly for Eli. I know when I see his sweet little face, I will want to know that I tried to do everything I could to give him the best quality of life. I don't want to have regrets due to my own personal fears or because I'd rather spend the summer at the beach and pool rather than in the bed or couch.
Many friends have told me that they wanted to know how they can specifically pray for us...so here you go:
1) First of all we have a HUGE PRAISE. We got a call this afternoon that BCBS (insurance) approved our case and that means that most likely we will pay a much smaller portion than we might have had too. Instead of $68,000 we will likely only pay around $7,000. This is a huge answer to prayer. Especially since just yesterday the same lady thought that it would take about six months of appeals before we'd finally know what we'd be left with. I really think it is another confirmation from the Lord to proceed.
2)Pray for Kevin as he finishes his semester of school. He has several papers and exams to take in the next few weeks.
3)Pray for our girls as they are going to be out of their element for quite some time. We have lots of fun things planned for them, but it is hard to have them out of their routine. Please pray that they will have fun and be easy on my sweet parents. Please pray that they will stay well while we are not near our doctors.
4)Pray for my parents as they step up to the plate and care for our girls. I know we won't worry about them when they are with them, so it is a huge blessing to us.
5) Please pray for the surgery and the doctors. Pray that it can go without complications or infection. Please pray that my body will heal quickly.
6) Please pray for little Eli that he will do fine and tolerate the surgery.
7) Please pray that I will not go into labor following the surgery. My goal is to make it to July 12th!! Please pray that we can get there.
8)Please pray that Eli might be one of the few kids with SB that does not require a brain shunt. This would be huge.
9) Please pray that we will be surprised by his functional level as he grows and that one day he will walk!!!
I could go on and on...but I am sure you have enough to work with. Thank you all for praying for us.
The appointment began with a nice long ultrasound for well over an hour. They carefully inspected every single part of Eli's little, tiny body. The ultrasound tech was wonderful. It was a much better experience than some we've had in the past. Eli did really well. Every other body part checked out perfectly other than the spina bifida related problems. Thankfully so far he does not have hydrocephalus. His ventricles measured 6.1 and 6.5 which are still well within the normal limits. They do expect them to increase as the pregnancy continues. His cerebellum does show signs of hindbrain herniation and they agreed that his lesion level is at L5. This is typical with SB. We are praying this will improve after the surgery. We also learned that he weighs a whopping 14oz. and is going normally.
After the ultrasound we went into a little room and from 10:15 until 3:00 we had back to back meetings with 9 different doctors, surgeons and specialist. I mean we barely had a minute or two between each person, It was really organized and all the doctors came right to us. The only problem was that we got so hungry that we thought we were going to die. I finally sent Kev after that "care cart" and that was a godsend.
We learned so much, got lots of information and many questions answered. They laid it all out there for us and weighed the very real risks with the possible advantages for choosing to undergo pre-natal surgery. It was pretty surreal to talk at length with the "world renowned prenatal surgeons." It was also very humbling to meet the surgeons who will in a few short days be operating on myself as well as our little Eli. When Dr. Tulipan came in I have to admit I almost cried. He is a surgeon who has dedicated his life to this surgery and although he was very matter of fact, it was amazing to meet someone whose hands in a few days, would be touching our unborn baby.
Before we left we gave them our verbal commitment and the surgery is scheduled. I can't say that I am excited. I am terrified! I feel like this is the best decision we can make for our family and most importantly for Eli. I know when I see his sweet little face, I will want to know that I tried to do everything I could to give him the best quality of life. I don't want to have regrets due to my own personal fears or because I'd rather spend the summer at the beach and pool rather than in the bed or couch.
Many friends have told me that they wanted to know how they can specifically pray for us...so here you go:
1) First of all we have a HUGE PRAISE. We got a call this afternoon that BCBS (insurance) approved our case and that means that most likely we will pay a much smaller portion than we might have had too. Instead of $68,000 we will likely only pay around $7,000. This is a huge answer to prayer. Especially since just yesterday the same lady thought that it would take about six months of appeals before we'd finally know what we'd be left with. I really think it is another confirmation from the Lord to proceed.
2)Pray for Kevin as he finishes his semester of school. He has several papers and exams to take in the next few weeks.
3)Pray for our girls as they are going to be out of their element for quite some time. We have lots of fun things planned for them, but it is hard to have them out of their routine. Please pray that they will have fun and be easy on my sweet parents. Please pray that they will stay well while we are not near our doctors.
4)Pray for my parents as they step up to the plate and care for our girls. I know we won't worry about them when they are with them, so it is a huge blessing to us.
5) Please pray for the surgery and the doctors. Pray that it can go without complications or infection. Please pray that my body will heal quickly.
6) Please pray for little Eli that he will do fine and tolerate the surgery.
7) Please pray that I will not go into labor following the surgery. My goal is to make it to July 12th!! Please pray that we can get there.
8)Please pray that Eli might be one of the few kids with SB that does not require a brain shunt. This would be huge.
9) Please pray that we will be surprised by his functional level as he grows and that one day he will walk!!!
I could go on and on...but I am sure you have enough to work with. Thank you all for praying for us.
Monday, April 11, 2011
Fears
We had a busy weekend which included Eliza having a fever and Daddy being out of town for school. He is in the midst of his heaviest load thus far in school and right at the point where he has lots due. Needless to say, if we'd known what this semester would hold for our family, we'd probably not pushed it. But, praise the Lord he only has about one month left in this semester!!! His schooling has been a huge sacrifice for us all.
We have a big week ahead. Lots of appointments and a final decisions about the surgery will be made. I do have to say that over the past week I have felt more like myself. I am so thankful for that. I think the thing that I am having the hardest time with is the fact that the surgery doesn't "fix" the problems. It can help in some big ways, but there is no cure for spina bifida. I think if I knew I could have the surgery and we'd be good to go...it would be much easier. I continue to realize that this journey will be a lifelong one. Some days that is overwhelming. I just wish this wasn't my reality.
On one hand, if we don't qualify for the surgery...life can continue for about 16 more weeks, with all of the normal pregnancy joys. Surgery would be done within a day of Eli's arrival and he would have a NICU stay following his surgery. According to the MOMS study, around 98% of kids who had the surgery post delivery had a brain shunt put in shortly after birth. This would most likely be a quick reality and something we'd have to monitor and "worry" over for the rest of his life.
On the other hand, if we do qualify for the surgery, my life will begin to be really different very soon. To be honest, I am very scared of the surgery. I'd be scared having major surgery no matter what, but I think because I am pregnant I know that it complicates things a lot. I fear something going wrong and having to stay at Vandy for the remaining weeks of the pregnancy. I cannot imagine! If things go normally, we can return home. If not, I would have to stay there. To be honest...I also fear dying. Not death in where I would go and my eternal home. I feel totally at peace with my trust and faith in Christ's atoning work on the cross. I just fear not being around to raise my girls and see them grow up. I think I am just having normal "mommy" feelings but as a mother it is my heart's desire to be there for my family. (I do realize that they did not lose any moms in the research trial, which is good to know.) I fear the possible complications from the surgery. I am sure we will learn more about all of this as we talk to many of the surgeons this week. I fear going into pre-term labor way to early and all of this would be in vain. I fear the weeks of trying to be so careful to avoid going into labor. They hope that after the surgery I can get to 34 or 35 weeks. It sounds so early, but I know it will be a long 13 -14 weeks.
This may sound like a silly post, but it is where I am today. I keep wondering why. Why this struggle at this time in our lives? Why our Eli? Why did we get pregnant when we were trying not too? Why does life have to be so hard and why are my pregnancies so very hard? Why???
I know there is a bigger picture here. I know God is in ultimately in control. I know He will use this struggle in our lives to encourage others. I know we will love Eli. I know in about five years the big picture will be clearer and it will be blessed. I just know the journey ahead is not going to be easy, no matter which option we choose. Thank you for your continued prayers for our family.
We have a big week ahead. Lots of appointments and a final decisions about the surgery will be made. I do have to say that over the past week I have felt more like myself. I am so thankful for that. I think the thing that I am having the hardest time with is the fact that the surgery doesn't "fix" the problems. It can help in some big ways, but there is no cure for spina bifida. I think if I knew I could have the surgery and we'd be good to go...it would be much easier. I continue to realize that this journey will be a lifelong one. Some days that is overwhelming. I just wish this wasn't my reality.
On one hand, if we don't qualify for the surgery...life can continue for about 16 more weeks, with all of the normal pregnancy joys. Surgery would be done within a day of Eli's arrival and he would have a NICU stay following his surgery. According to the MOMS study, around 98% of kids who had the surgery post delivery had a brain shunt put in shortly after birth. This would most likely be a quick reality and something we'd have to monitor and "worry" over for the rest of his life.
On the other hand, if we do qualify for the surgery, my life will begin to be really different very soon. To be honest, I am very scared of the surgery. I'd be scared having major surgery no matter what, but I think because I am pregnant I know that it complicates things a lot. I fear something going wrong and having to stay at Vandy for the remaining weeks of the pregnancy. I cannot imagine! If things go normally, we can return home. If not, I would have to stay there. To be honest...I also fear dying. Not death in where I would go and my eternal home. I feel totally at peace with my trust and faith in Christ's atoning work on the cross. I just fear not being around to raise my girls and see them grow up. I think I am just having normal "mommy" feelings but as a mother it is my heart's desire to be there for my family. (I do realize that they did not lose any moms in the research trial, which is good to know.) I fear the possible complications from the surgery. I am sure we will learn more about all of this as we talk to many of the surgeons this week. I fear going into pre-term labor way to early and all of this would be in vain. I fear the weeks of trying to be so careful to avoid going into labor. They hope that after the surgery I can get to 34 or 35 weeks. It sounds so early, but I know it will be a long 13 -14 weeks.
This may sound like a silly post, but it is where I am today. I keep wondering why. Why this struggle at this time in our lives? Why our Eli? Why did we get pregnant when we were trying not too? Why does life have to be so hard and why are my pregnancies so very hard? Why???
I know there is a bigger picture here. I know God is in ultimately in control. I know He will use this struggle in our lives to encourage others. I know we will love Eli. I know in about five years the big picture will be clearer and it will be blessed. I just know the journey ahead is not going to be easy, no matter which option we choose. Thank you for your continued prayers for our family.
Thursday, April 7, 2011
Locks of Love
Today I cut off two years of growth for a good cause. Almost exactly two years ago, I was about 23 weeks pregnant with little miss Eliza Anne and I got a good ole cut! Since that day I have been growing it back out. That is what I do. I get a cut and then grow it back out!
After a long time of growing with only a few trims in between...it was time. My thick head of hair had gotten very long and very time consuming. I am talking...lots of work to make it look good.
I cringed with hesitation as my thick ponytail got cut off, while my girls and Kevin cheered! (He met me at the salon to pick them up). After the ponytail was cut...a lot more hair came off. I was getting a little nervous!
Ella wasn't so cure and just kept staring. Eliza was scared to death of the hair in the ponytail! I can't say that I blame her as it looked a little like a dead squirrel.
I had to come home and re-wash and dry it myself. The outcome was good. It took me only ten minutes to blow-dry, straighten, and style. That is a BIG improvement...I assure you!
Kev said he liked it...and was glad that he could finally tell that I'd gotten a cut. He is so easy and always says to do whatever will get us out the house the fastest. He also isn't too keen on paying big bucks for little trims. I could tell that Eliza could tell that something was different. Poor little Ella kept asking me to put my other hair back on!
I am sure I will start growing it back out again soon. But I sure hope that there is a beautiful natural red-head somewhere that I can bless with a thick, naturally red wig! I think that makes it worth it no matter what! I will post a before and after picture when I get them uploaded off the camera.
After a long time of growing with only a few trims in between...it was time. My thick head of hair had gotten very long and very time consuming. I am talking...lots of work to make it look good.
I cringed with hesitation as my thick ponytail got cut off, while my girls and Kevin cheered! (He met me at the salon to pick them up). After the ponytail was cut...a lot more hair came off. I was getting a little nervous!
Ella wasn't so cure and just kept staring. Eliza was scared to death of the hair in the ponytail! I can't say that I blame her as it looked a little like a dead squirrel.
I had to come home and re-wash and dry it myself. The outcome was good. It took me only ten minutes to blow-dry, straighten, and style. That is a BIG improvement...I assure you!
Kev said he liked it...and was glad that he could finally tell that I'd gotten a cut. He is so easy and always says to do whatever will get us out the house the fastest. He also isn't too keen on paying big bucks for little trims. I could tell that Eliza could tell that something was different. Poor little Ella kept asking me to put my other hair back on!
I am sure I will start growing it back out again soon. But I sure hope that there is a beautiful natural red-head somewhere that I can bless with a thick, naturally red wig! I think that makes it worth it no matter what! I will post a before and after picture when I get them uploaded off the camera.
Wednesday, April 6, 2011
"Welcome to Holland"
Someone shared this with me and I think it is worth your time....esp. if you yourself never make it to Italy!
"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reservedI am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And some of that pain will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland
Tuesday, April 5, 2011
This and that
So far it has been a pretty good week. I think I am beginning to feel more like myself again and less like an emotional train wreck. Maybe I have cried all the tears that I can cry and reality is settling within me. Maybe the Lord is giving me peace. I am enjoying every moment with my girls. I keep realizing that my time to pick them up, carry them in my arms, go out shopping or anywhere alone with them, and give them baths is limited. (I may not really miss bath time all that much though!)
Ella has been pretty clingy these past few days. She only wants mommy to "help" her. We have talked to her a little about Eli having an "owie" on his back and that mommy is going to go to the hospital to get it fixed. I think she is getting a little anxious about it all and I can't say that I blame her. Yet, she is excited about her "vacation" and she cannot wait to pack her clothes. I just wish I was going to get to "vacation" with them.
I was trying to think today of how I cope with hard times. For one, it is very clear that everyone copes differently. This is one thing that Kevin and I clearly learned when we lost Samuel, and one that we are re-learning again.
I cope by planning and researching. I have read and studied more about Spina Bifida than I ever wanted or expected to know. Let's see....there is: hindbrain herniation, Chari Malformation, shunts of various kinds, decompression surgeries, tethered cord surgeries, shunt revision surgeries, there are lesion levels and lesion functions, there are walkers, and standers, and cathing and enema programs...and on and on. I cope by learning all that I can. I want to know what does happen, what might happen, what to expect. I do realize that I will never be able to fully be prepared for this journey, but I like to be informed.
I also like to look to the future. After we lost Samuel, I coped by wanting and desperately needing to have another child. I marked the days off on the calendar. I had it all planned. God's timing was just a little longer...(okay, a lot longer) than mine. I do not know what God is up to in our lives. I do not have a clue what our family will be or look like in five years. I do know a few things that I feel like he has laid on my heart that brings me some hope and encouragement for the future.
I cope by getting up everyday and getting dressed. Sounds simple but when life gets overwhelming sometimes it is easier to want to bury your head in the pillow. I try my best to keep going. I put on my make-up and try to feel good. I want to be at church when there is church. I want to be involved where and when I can. I want to keep living as I would have five weeks ago.
I also cope by praying more. I realize my need for Christ to help get me through little task like sitting in a waiting room full of "happy" pregnant women or trusting in Him when I feel overwhelmed or forsaken. I am continually asking Him to put a hedge of protection around our family and our girls. I am praying that he will provide what we need financially to do all that we need to do. We have seen him begin to answer that prayer and several ways just this week.
Psalm 84
How lovely is your dwelling place, O Lord of hosts!
My soul longs, yes, faints for the courts of the Lord;
my heart and flesh sing for joy to the living God.
Even the sparrow finds a home, and the swallow a nest for herself,
where she may lay her young, at your altars, O Lord of hosts,
my King and my God.
Ella has been pretty clingy these past few days. She only wants mommy to "help" her. We have talked to her a little about Eli having an "owie" on his back and that mommy is going to go to the hospital to get it fixed. I think she is getting a little anxious about it all and I can't say that I blame her. Yet, she is excited about her "vacation" and she cannot wait to pack her clothes. I just wish I was going to get to "vacation" with them.
I was trying to think today of how I cope with hard times. For one, it is very clear that everyone copes differently. This is one thing that Kevin and I clearly learned when we lost Samuel, and one that we are re-learning again.
I cope by planning and researching. I have read and studied more about Spina Bifida than I ever wanted or expected to know. Let's see....there is: hindbrain herniation, Chari Malformation, shunts of various kinds, decompression surgeries, tethered cord surgeries, shunt revision surgeries, there are lesion levels and lesion functions, there are walkers, and standers, and cathing and enema programs...and on and on. I cope by learning all that I can. I want to know what does happen, what might happen, what to expect. I do realize that I will never be able to fully be prepared for this journey, but I like to be informed.
I also like to look to the future. After we lost Samuel, I coped by wanting and desperately needing to have another child. I marked the days off on the calendar. I had it all planned. God's timing was just a little longer...(okay, a lot longer) than mine. I do not know what God is up to in our lives. I do not have a clue what our family will be or look like in five years. I do know a few things that I feel like he has laid on my heart that brings me some hope and encouragement for the future.
I cope by getting up everyday and getting dressed. Sounds simple but when life gets overwhelming sometimes it is easier to want to bury your head in the pillow. I try my best to keep going. I put on my make-up and try to feel good. I want to be at church when there is church. I want to be involved where and when I can. I want to keep living as I would have five weeks ago.
I also cope by praying more. I realize my need for Christ to help get me through little task like sitting in a waiting room full of "happy" pregnant women or trusting in Him when I feel overwhelmed or forsaken. I am continually asking Him to put a hedge of protection around our family and our girls. I am praying that he will provide what we need financially to do all that we need to do. We have seen him begin to answer that prayer and several ways just this week.
Psalm 84
How lovely is your dwelling place, O Lord of hosts!
My soul longs, yes, faints for the courts of the Lord;
my heart and flesh sing for joy to the living God.
Even the sparrow finds a home, and the swallow a nest for herself,
where she may lay her young, at your altars, O Lord of hosts,
my King and my God.
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