Friday, May 20, 2011
4th post op appointment
We had our weekly ultrasound and appointment today. It went pretty good. There were no major changes and so far so good. Eli's right ventricle is still normal and is left is slightly enlarged. There was a tiny bit of an increase since last Fri. on that side. Please pray that it will stabilize. It def. does appear that his right foot is clubbed. That makes us sad, but in the scheme of things it isn't as major. My fluid levels continue to be great and I am feeling really good. I wish that since I am feeling so good that I could resume my normal activities, but since pre-term labor is such a known risk following the surgery...I will continue to take it easy. We got several great 3d pictures of Eli today and we got to watch him put his toes in his mouth! It was crazy! He weighs 2lbs 1oz. as of today. If you pray for him please pray for his leg movement and function, his ventricles to stabilize and not continue to increase and that he will stay snug inside for at least 7 more weeks. Thank you for praying for us!
Thursday, May 19, 2011
A few surgery Pics
We were lucky enough that our sweet fetal surgery coordinator who is a part of the fetal surgery team was able to take some pictures of my surgery. Don't worry...I left out all of the close-ups!! We have pictures of my uterus completely out of my body with Eli inside. I had no clue how big my uterus already was at 22 weeks at the time of my surgery! No wonder my clothes were not fitting. We also got some pictures of his spina bifida lesion prior to repair on his very very tiny little back. I am so thankful for each of the individuals in this picture. They are everyone from my surgeons, Eli's neurosurgeon, and anaesthesiologist, and a ultrasonographer. I am so thankful for the team that the Lord used and equipped for us that day! I am thankful for their value of this little life inside me. But, I do believe with all my heart that if our eyes could really see...
As you do not know the path of the wind, or how the body is formed in a mother's womb, so you cannot understand the work of God, the Maker of all things. Ecc. 11:5
We would see that...
We were not alone!
(I recently saw this picture and immediately loved it!)
Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. Hebrews 12:1As you do not know the path of the wind, or how the body is formed in a mother's womb, so you cannot understand the work of God, the Maker of all things. Ecc. 11:5
Tuesday, May 17, 2011
Monday, May 16, 2011
What I am looking forward to... and not forward to....
What I am looking forward to:
1. Getting to go out to eat in two weeks when I hit 28 weeks with doc. approval. It just happens to be our 8th wedding anniversary so that makes it even better.
2. Kev being done with this semester in 3 more days. I don't know I've ever been so ready for him to not have school on the agenda. He is taking one class this summer, but it is an easy one.
3. Going out without a wheelchair. This experience has given me a new appreciation for those who daily face this.
4. Finally seeing Eli for the first time. I feel like we both have been through a lot together in the past few weeks and I am excited to see his sweet little face. I know it will make it all worth it.
5. My body going back to normal. I am so ready to not be pregnant. I know that sounds terrible to some, but I am really ready to get through this physically. I am ready to lose the pregnancy pounds and get back in my clothes and feel good. This will be my 4th time to shed the pounds in the past 5 years and I am ready to not do it EVER again. While I am so thankful for my children, there is a part of me that is really ready to to be done with pregnancy.
6. Watching the girls love their brother. Ella said the other day that she didn't want a brother because she doesn't want us to have boy toys. Eliza is very jealous if I hold anyone other than her or Ella. It will be a learning process for us all. I know they will be great big sisters.
7. Eli turning one. How crazy is that! I think that by then life may seem normal to us an we will have begun to adjust to our new normal. I in no way want to rush through his baby days. I want to enjoy each and every one...but I have to admit that I am scared of what his first year will hold.
What I am not looking forward to:
1. Having a C-section in a few short weeks. My incision is just now healing nicely and I dread doing that again so soon. I also had a plastic surgeon (just part of the process) for the prenatal surgery and I have heard that I have a nice incision. I am doubting it will look as nice next time. I have heard the recovery should be much easier and that will be good.
2. As much as I am ready to really be done with pregnancy, it makes my heart so sad that this is for sure our last child. We have both decided that this is best for our family without a doubt. It still makes me sad that this chapter in my life will be ending. I still feel young and it has gone way to fast. I have decided that I probably would feel this way no matter if I had 3 or 10 kids. Someone always has to be the baby.
3. Eli's first few days/weeks. I always have my babies room in with me as much as possible from the time they arrive. This time will be totally different for us. I don't really know what to expect as far as NICU time and I am already dreading most likely leaving the hospital without my baby. That is something I never wanted to do again although thankfully the circumstances should be very different.
4. The challenges of nursing again. Need I say more! I am thankful that it has worked in the past, but I know how hard it can be in the beginning. I know a NICU stay may make it a little different this time too.
5. The frumpy stage. Those first few weeks after having a baby are just NO fun for me. Nothing fits right in any spots. I am starving constantly. The feelings of anxiousness over this new little life. Trying to keep the newbie well without being overly paranoid. Trying to get everyone back into a normal new schedule. Whew!!
After all that....I may enjoy these next few weeks of bed rest a little more!
1. Getting to go out to eat in two weeks when I hit 28 weeks with doc. approval. It just happens to be our 8th wedding anniversary so that makes it even better.
2. Kev being done with this semester in 3 more days. I don't know I've ever been so ready for him to not have school on the agenda. He is taking one class this summer, but it is an easy one.
3. Going out without a wheelchair. This experience has given me a new appreciation for those who daily face this.
4. Finally seeing Eli for the first time. I feel like we both have been through a lot together in the past few weeks and I am excited to see his sweet little face. I know it will make it all worth it.
5. My body going back to normal. I am so ready to not be pregnant. I know that sounds terrible to some, but I am really ready to get through this physically. I am ready to lose the pregnancy pounds and get back in my clothes and feel good. This will be my 4th time to shed the pounds in the past 5 years and I am ready to not do it EVER again. While I am so thankful for my children, there is a part of me that is really ready to to be done with pregnancy.
6. Watching the girls love their brother. Ella said the other day that she didn't want a brother because she doesn't want us to have boy toys. Eliza is very jealous if I hold anyone other than her or Ella. It will be a learning process for us all. I know they will be great big sisters.
7. Eli turning one. How crazy is that! I think that by then life may seem normal to us an we will have begun to adjust to our new normal. I in no way want to rush through his baby days. I want to enjoy each and every one...but I have to admit that I am scared of what his first year will hold.
What I am not looking forward to:
1. Having a C-section in a few short weeks. My incision is just now healing nicely and I dread doing that again so soon. I also had a plastic surgeon (just part of the process) for the prenatal surgery and I have heard that I have a nice incision. I am doubting it will look as nice next time. I have heard the recovery should be much easier and that will be good.
2. As much as I am ready to really be done with pregnancy, it makes my heart so sad that this is for sure our last child. We have both decided that this is best for our family without a doubt. It still makes me sad that this chapter in my life will be ending. I still feel young and it has gone way to fast. I have decided that I probably would feel this way no matter if I had 3 or 10 kids. Someone always has to be the baby.
3. Eli's first few days/weeks. I always have my babies room in with me as much as possible from the time they arrive. This time will be totally different for us. I don't really know what to expect as far as NICU time and I am already dreading most likely leaving the hospital without my baby. That is something I never wanted to do again although thankfully the circumstances should be very different.
4. The challenges of nursing again. Need I say more! I am thankful that it has worked in the past, but I know how hard it can be in the beginning. I know a NICU stay may make it a little different this time too.
5. The frumpy stage. Those first few weeks after having a baby are just NO fun for me. Nothing fits right in any spots. I am starving constantly. The feelings of anxiousness over this new little life. Trying to keep the newbie well without being overly paranoid. Trying to get everyone back into a normal new schedule. Whew!!
After all that....I may enjoy these next few weeks of bed rest a little more!
Sunday, May 15, 2011
Updates
I was told today that my blog had been a little too quiet this week. The truth is that my life has been pretty quiet too. I am beginning my 4th week of laying low. I cannot tell you how thankful I am to be here rather than where I was 4 weeks ago today. I will say again that I am so thankful to have that surgery behind me..."us." I am healing nicely and really just starting to feel like a big ole pregnant lady! I have done some big growing in the past few weeks and I am blaming it all on the fact that I can't do any exercising and so many sweet people are bringing us yummy meals. Not a good combination for pregnancy weight gain, but I will deal with that again in a few short weeks.
Our appointment on Friday went pretty good. Our wait time was only 30 minutes rather than the hour and 20 from the previous week. My fluid levels were great and Eli's ventricles were stable since the last week. The left side is completely normal and the other is right at the max of normal. I am praying and praying that they will continue to stabilize. Oh how I pray we can avoid a brain shunt!!! It is one of the hopes from doing the surgery. 98% of babies with SB need one but for the ones who have surgery in utero the percentage is closer to 63% or so. (I don't have the info. right here but it is less.) If he can make it to the age of one without one, he would be less likely to need one later in life...although he still may. There are many issues that go along with having a shunt like revisions, infections, and etc. and it is one more thing to make life more complicated. If he needs one, we will deal with that too. I am going to pray fervently that we will not.
My biggest concern right now is his leg movement. We've had lots of ultrasounds and really haven't seen any in weeks. I do feel a good amount of movement each day, but we worry about his leg movement. I am praying that God will continue to heal those nerves and allow him to have as much leg function as possible. More than anything, I pray that he will have a heart for the Lord. In the grand scheme of life that is all that matters.
Can I just say how much I love my husband and all of those who are carrying us through these weeks. I am so thankful that hard times always seem to unify Kevin and I in a way that we will never forget and always cherish. Don't get me wrong...we deal with hard times very differently, yet God always seems to use them to strengthen our marriage and commitment to each other. It is such a comfort each week as we sit and look at the ultrasound screen anxiously awaiting "what's new" to know that no matter what we are facing it together. It is such a comfort to me to know that Eli will have such a great daddy who will help him to be the boy and man that God created him to be.
Check back this week for lots of picture updates!!
Our appointment on Friday went pretty good. Our wait time was only 30 minutes rather than the hour and 20 from the previous week. My fluid levels were great and Eli's ventricles were stable since the last week. The left side is completely normal and the other is right at the max of normal. I am praying and praying that they will continue to stabilize. Oh how I pray we can avoid a brain shunt!!! It is one of the hopes from doing the surgery. 98% of babies with SB need one but for the ones who have surgery in utero the percentage is closer to 63% or so. (I don't have the info. right here but it is less.) If he can make it to the age of one without one, he would be less likely to need one later in life...although he still may. There are many issues that go along with having a shunt like revisions, infections, and etc. and it is one more thing to make life more complicated. If he needs one, we will deal with that too. I am going to pray fervently that we will not.
My biggest concern right now is his leg movement. We've had lots of ultrasounds and really haven't seen any in weeks. I do feel a good amount of movement each day, but we worry about his leg movement. I am praying that God will continue to heal those nerves and allow him to have as much leg function as possible. More than anything, I pray that he will have a heart for the Lord. In the grand scheme of life that is all that matters.
Can I just say how much I love my husband and all of those who are carrying us through these weeks. I am so thankful that hard times always seem to unify Kevin and I in a way that we will never forget and always cherish. Don't get me wrong...we deal with hard times very differently, yet God always seems to use them to strengthen our marriage and commitment to each other. It is such a comfort each week as we sit and look at the ultrasound screen anxiously awaiting "what's new" to know that no matter what we are facing it together. It is such a comfort to me to know that Eli will have such a great daddy who will help him to be the boy and man that God created him to be.
Check back this week for lots of picture updates!!
Monday, May 9, 2011
I wish...
This is my third attempt to write a new post tonight. The first one was completely random and perhaps a tiny bit funny (probably only to me) and had nothing to do with how I am feeling today. The second was sad and overwhelming and perhaps on the verge of despair. So in an attempt to be true to this journey yet, not get lost in my own fears and doubts...I will try again.
I know questions and doubts are part of the journey. Today I am just feeling sad for being on this journey. I so wish Eli was "healthy." Isn't that all that any pregnant person wishes for? I wish I was enjoying a normal pregnancy with my normal doctor. I wish I wasn't relying so heavily on my friends and family. I wish I could get in the car and load my girls up and go to Target. I wish I felt prepared to have Eli. After all this won't be my first time to do this...yet there seems to be so many new and unknown things surrounding his birth that I don't know what to expect. It is what it is...but I so wish I could change it.
I know questions and doubts are part of the journey. Today I am just feeling sad for being on this journey. I so wish Eli was "healthy." Isn't that all that any pregnant person wishes for? I wish I was enjoying a normal pregnancy with my normal doctor. I wish I wasn't relying so heavily on my friends and family. I wish I could get in the car and load my girls up and go to Target. I wish I felt prepared to have Eli. After all this won't be my first time to do this...yet there seems to be so many new and unknown things surrounding his birth that I don't know what to expect. It is what it is...but I so wish I could change it.
Saturday, May 7, 2011
Friday's Appointment
Yesterday I had my second appointment with our local MFM doctors. We had an hour and 20 min wait in the waiting room, ultrasound and then a check-up! I am thinking that Friday afternoon is probably the worst time to have an appointment.
We got to see Eli's little face in 3D again and it looked so sweet. It always blows my mind when I see it! He is weighing in at 1lb. 8oz. or there about which is right on track for where I am. My amniotic fluid was great and the back of the brain/chiari malformation looked good...or better. I almost think the doctor called it normal which means that instead of the cerebellum looking like a banana it looks more like a figure 8 now. That is great news!
I asked the ultrasound lady if we could watch his legs for a bit. He keeps them piked up by his face and crossed at the ankles. He has stayed in that position for weeks although he has been in a different position at almost each ultrasound. We haven't really been able to see any leg or feet movement. I asked....hoping we might. She tried and tried to get those little legs to do something, but they didn't! It was disappointing. We also learned that his right foot appears to be clubbed now. This would be a sign of nerve damage in that leg. Although you just can't really tell for sure from an ultrasound about future leg function....our hearts were sad. We love him no matter what. We will do anything we can to give him the best life possible...but it doesn't make the hurt any less. We also learned that one of his ventricles had increased a bit from last week. It is right at the point where it is no longer considered normal. The other side is still okay. We knew this was all very possible...but you never ever what to hear bad news about your child!
On the way home from the doctor, Kevin played a new song for me that he found on a CD. One of the lyrics stood out to me. It said something to the affect that...."our reward is your faithfulness." Sometimes I feel like I deserve some big reward. Like I have been given the short side of the stick on more than one occasion as far as pregnancy goes. It is easy to feel frustrated with others who haven't experienced a hard pregnancy and take it all forgranted. Or maybe they don't take it forgranted but just don't realize how much worse it could really be. It is easy to feel that way in the midst of hardtimes. I am going to try to remember that God's faithfulness to us is our reward. We don't deserve it and have done nothing to earn it. We are loved and forgiven and that is reason enough to be thankful even when my heart feels really sad.
We have also been so blessed by our church family and friends: meals, people cutting our grass, giving of their time, giving of their money and holding us up with prayers, cards, etc. Apparently, about 50 people have gone in and paid for our house to get cleaned once a week. I hate even writing that because I don't want to cause anyone to be jealous! :) Those that know me know that I like to have a clean house. It was such a blessing to come home from our doctor's appointment to a clean home. It is also a blessing that today Kev is able to run our errands and entertain the girls without having to cut the grass and spend the day trying to clean. We are so thankful to each of you who have ministered to our family during these weeks. We would so much rather be on the giving end and it is hard for us to accept all the kindness given to us, but we sincerely thank you.
I am continuing to pray that we will be surprised by how well Eli does despite this disability....continuing to pray for God's healing to his little body.
We got to see Eli's little face in 3D again and it looked so sweet. It always blows my mind when I see it! He is weighing in at 1lb. 8oz. or there about which is right on track for where I am. My amniotic fluid was great and the back of the brain/chiari malformation looked good...or better. I almost think the doctor called it normal which means that instead of the cerebellum looking like a banana it looks more like a figure 8 now. That is great news!
I asked the ultrasound lady if we could watch his legs for a bit. He keeps them piked up by his face and crossed at the ankles. He has stayed in that position for weeks although he has been in a different position at almost each ultrasound. We haven't really been able to see any leg or feet movement. I asked....hoping we might. She tried and tried to get those little legs to do something, but they didn't! It was disappointing. We also learned that his right foot appears to be clubbed now. This would be a sign of nerve damage in that leg. Although you just can't really tell for sure from an ultrasound about future leg function....our hearts were sad. We love him no matter what. We will do anything we can to give him the best life possible...but it doesn't make the hurt any less. We also learned that one of his ventricles had increased a bit from last week. It is right at the point where it is no longer considered normal. The other side is still okay. We knew this was all very possible...but you never ever what to hear bad news about your child!
On the way home from the doctor, Kevin played a new song for me that he found on a CD. One of the lyrics stood out to me. It said something to the affect that...."our reward is your faithfulness." Sometimes I feel like I deserve some big reward. Like I have been given the short side of the stick on more than one occasion as far as pregnancy goes. It is easy to feel frustrated with others who haven't experienced a hard pregnancy and take it all forgranted. Or maybe they don't take it forgranted but just don't realize how much worse it could really be. It is easy to feel that way in the midst of hardtimes. I am going to try to remember that God's faithfulness to us is our reward. We don't deserve it and have done nothing to earn it. We are loved and forgiven and that is reason enough to be thankful even when my heart feels really sad.
We have also been so blessed by our church family and friends: meals, people cutting our grass, giving of their time, giving of their money and holding us up with prayers, cards, etc. Apparently, about 50 people have gone in and paid for our house to get cleaned once a week. I hate even writing that because I don't want to cause anyone to be jealous! :) Those that know me know that I like to have a clean house. It was such a blessing to come home from our doctor's appointment to a clean home. It is also a blessing that today Kev is able to run our errands and entertain the girls without having to cut the grass and spend the day trying to clean. We are so thankful to each of you who have ministered to our family during these weeks. We would so much rather be on the giving end and it is hard for us to accept all the kindness given to us, but we sincerely thank you.
I am continuing to pray that we will be surprised by how well Eli does despite this disability....continuing to pray for God's healing to his little body.
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