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.

Planning for Eli

This is usually the stage in my pregnancies where I am ready to clean out our house, de-clutter and start getting things ready for the new little one.  Since that isn't going to be an option this time, I am nesting on the computer.  I am excited about making a cute little room for little Eli.  It is exciting to look at boy things and a completely different color scheme.  So, these are my thoughts as of now for Eli's little room.  I am not saying that we are buying all of this, but I am just enjoying waisting some time looking at things.  I bought a clearance brown and white polka dot bumper at Target not long after I found our that we were expecting.  I think I only paid $6.00 for it!  You can see a blurry picture of it below. In case you didn't know.... I have a thing for polka dots!  I wanted to find something that would coordinate and found the rest of the bedding that I like best so far at target.com.  The diaper bag below is from Pottery barn kids.  I'm not sold on it yet, but I do love a good reason to get a new bag!!  I can't wait to see his little initials monogrammed on something!

Curtain...this is blurry, but it has giraffes on it (blue, orange, brown and green).

I would only be getting the blanket, crib skirt and sheet.  See the bumper down below.

crib skirt

A potential wall color or something similar

eli for over the crib

This is a bumper that I bought on clearance at Target a while back...sorry it is so blurry. 

I think I like this diaper bag.  I am still thinking.  We had a similar one with Eliza and it held up well.

A day at a time...

This pregnancy has been a whirlwind.  We waited a long time (16 weeks) to share our good news and then the very next week our world got a bit turned upside down.  After receiving Eli' diagnosis we were thrown into the what do we do mode.  Do we seek prenatal surgery?  Do we have the amnio?  Is there something else chromosomally wrong?  On top of that we found our about a week later that Kev's job of ten years would be ending at the end of June and he was in the midst of his hardest semester of school thus far.  We were feeling pressure on all sides.  It was honestly more stress than we could even deal with and just proceeded day by day, trusting/clinging to God for help and strength.  Sometimes you find yourself in a place where there is no other option but to lean hard and wait.  You cannot make things work or figure things out on your own. 

Now, here we are 8 weeks later and I guess the dust has settled some.  Eli's chromosomes were normal.  We proceeded step by step through the prenatal surgery consult and are now two weeks post-op.  We are setting up a routine and so many are graciously offering help and support.  I am at home this morning without my girls.  It is may be the first time since I had Ella that I am at home alone for some part of the day.  It is strangely quiet and I miss my girls and being able to go about our normal life.  I miss driving myself, and Target, and picking up Eliza everytime she reaches up her little arms.

While dealing with the upcoming surgery we really put Kev's job situation on the back burner.  We couldn't tackle it all at once.  Well, it is time to really make some important decisions.  In fact, we have to make a big decision by Saturday at noon.  I hate when you have a time-line on big decisions.  We are praying the Lord will give us wisdom to make the best decision for our family.

One thing I am sure of, living a life of faith and trusting Christ as your Lord and Savior is so much more than a quick easy prayer or a nominal surrender of one's life.  It means trusting God when you are in the trenches or the pressure cooker.  It is clinging when there is such disappointment.  It is walking by faith when life is almost too hard.  It is being content when life gives you lemons and everyone else is drinking lemonade.  It is not easy.  I am needing the Lord's help in this today.

Oh, and I am 24 weeks now.  That was our first goal even though it is hardly a goal in my opinion.  Now to getting to 28!!

Sunday

"I was glad when they said unto me, let us go to the house of the Lord." 

I got to have a little outing this morning to church.  Don't worry, I rode in style in my new wheelchair and sat the entire time.  It was good for me to get out of the house for a bit and good to be back at church.  Kev and ella did a good job pushing me gently!!

Kev taught Sunday school today.  It has been several weeks since he has taught with all that has been going on.  He taught on Psalms 139.  It was such a good reminder for me that God has and is knitting our little Eli together in my womb.  He is control.  He is all knowing, all powerful, has all authority and all control.  The Lord continues to give me peace and hope for Eli and his future.

When we first received Eli's diagnosis, I found it hard to be excited about having another child.  It seemed like our family was going to change so much.  I felt so frustrated and even struggled with the idea of having a boy.  I know that sounds crazy, but after having two little girls we just felt like such a girlie family.  I didn't know what God was doing and it was hard. 

Over the past few weeks I have felt so much more bonded to our little guy.  I am so proud of how good he did during his surgery.  I feel like he and I have been through so much together already and I am finding myself really getting excited.  I am even getting excited about having another little boy....one to keep. I have been spending lots of time looking for cute little boy things on the internet.  In my heart, I feel more of a peace about what we are facing.  That is a blessing.

Lay, Sit, Repeat...

Nothing too exciting to blog about here and in our current situation I think that is a good thing.  I am on modified bed rest...which means a whole lot of resting....esp. for the next six weeks or so.  I can get up for meals and showers, etc.  I am taking it one day at a time and I am going to try my very best to not complain about this.  I have enjoyed lots of royal wedding coverage today!! 

Kevin is doing great being Mr. mom, but I think he completely knows how hard it is to get it all done.  I hate not being able to help him when I know what and where things are that he needs.  I am so proud of him and I love him so much for being such a wonderful husband. 

I did have another doctor's appointment today.  It was my first one since being home.  I will continue to have a weekly appointment which will include a weekly ultrasound and a weekly NST starting in about a week.  I thought in my other 3 pregnancies I had a lot of extra ultrasounds but little Eli is def. going to take the cake. 

That's about all that's new...time to turn over! 

There's no place like home!!!

We arrived home to our local airport around 6:30pm. I may or may not have shed a few tears and we arrived.  It felt like the end of a long journey!  It was a delayed and somewhat bumpy flight home due to the bad weather surrounding TN.  We were so thankful to get home.  It is definitely a new experience for me to be in a wheelchair...somewhat humbling I guess.  The girls did great and I think they were as happy to be home as we were.  In fact, Ella said about 4 times, "Mommy, it's so good to be at my house."  I couldn't agree with her more. 

Our ultrasound today went really well.  Eli's fluid is still in the normal range and his ventricles are still measuring normally as well.  I think the best thing that we saw today was fluid or a space back behind the cerebellum.  One aspect of spina bifida is that it causes the cerebellum to be pulled down into the spinal column where it should not be.  It is called hindbrain herniation or Chari malformation.  Eli did have this visible on ultrasound prior to our fetal surgery.  One of the benefits of fetal surgery is that they often saw that over the remaining part of the pregnancy the cerebellum was able to move back to where it should be.  This was one of the motivating factors in us doing the surgery.  So today when they did our ultrasound we could already see this happening after one week!!! I think everyone in the room was excited to see this already!!!  It helped to make all the pain and inconveniences worth it to already see some physical benefit for Eli.  Please keep praying that God will continue to heal our little Eli as he grows. 

Today they asked me if I thought the experience had been harder, easier or what I had expected.  I guess that is a hard question to answer because there were times when it was way harder!!  There were also moments when it was easier.  I did say that all along we felt so blessed by each person we came in contact with.  I cannot say enough good things about my doctors at Vanderbilt.  I just wish they were local!  They will continue to follow us on a weekly basis, so I look forward to staying in touch with them in the weeks to come.

So, the weeks to come are ones that will be low-key and doing everything I can to let our sweet little boy grow as long as he can.  This includes lifting nothing heavier than a gallon of milk.  I know as the weeks go by and I feel better and better this will be hard for me.  It is so natural to just "do" what needs to be done.  I know in the grand scheme of life this will be a very short period and so we will do all we can do to get Eli here as late as possible.  I would love to make it to 37 weeks.  34 weeks is considered about normal for this pregnancy.  Please pray that fluids will stay high and contractions will stay away.  Here's to the next 13 weeks (hopefully) of cooking!!

Tuesday...glad to be one week out!

I am so glad to be one week out from surgery now!  I am so thankful to have a week of healing behind me today rather than where I was last week at this time.  I am continuing to feel better each day.  Today we had an appointment with a pediatric urologist at Vanderbilt.  We spoke briefly with my doctor a few days ago about the possibility of us returning after Eli is born to be seen at the Spina Bifida clinic here.  We do have a SB clinic in our town so it will really depend of how things go there.  We really want him to have the best care that he can have and so we are looking into this as an option for the future.  It was good to meet with the urologist and get some ideas of care and what will happen after his birth from an urological perspective.  I have learned that so much at this point is a wait and see, but I always like to be prepared for what might be coming.  As always we are praying that he will do better than the norm and will always surpass our expectations.  I am sure that is every parent's hope as they raise a child that has extra needs.

We are praying that today is our last day here.  It has been a good stay, but we are ready to get home.  They are expecting lots of severe weather here for tonight and for tomorrow,  We are really praying that this will not mess up out flight home.  Ella is excited about her first airplane ride.  It should be fun for mom and Kevin navigating us through the airport with me in a wheelchair, Eliza in a stroller and Ella.  It shouldn't be too bad once we get all of our luggage checked.  So, tomorrow is our last hurdle before we are home.  SO thankful1