22 Weeks

Yesterday I had an appointment with my regular obstetrician Dr. Nancy Bertsch. I have not seen or spoken to her since she first delivered the spina bifida diagnosis and made the referral on to the specialist.

I was actually looking forward to the visit and to getting to sit down and tell her everything that we have learned over the last three weeks.

When she walked in she told me that she had been receiving visit notes from all of our visits at Texas Children's Hospital, and she was actually pretty up to date on our case. If everything goes well after the in-utero repair I may get to come home after a few weeks in Houston. If so, I will get to see Dr. Bertsch and a local perinatologist every other week and see TCH/Baylor doctors on the alternating weeks. That sounds amazing to me at this point- just praying that works out.
We also talked about how early Caroline might arrive. If I make it until 34 weeks, which is the goal of the surgeons, I will deliver on or around February 20th. Just putting everything into perspective.

Onto the stats---

How Far Along: 22 weeks
Size of baby: about 11 inches long
Total Weight Gain/Loss: 6 pounds gained
Maternity Clothes: Yes
Gender: precious baby GIRL!
Name: Caroline Grace Ruple
Movement: lots of movement- Dr. Bertsch could see her moving when she was measuring my belly.
Sleep: Still not too bad (other than this horrible cough I have that is keeping me awake). Of course still waking up to go to the bathroom about once a night.
What I miss: Sandwich meat!
Cravings: Jimmy John's - may be my first meal after delivery- do they have those in Houston? :)
Symptoms: Really just heartburn- pretty used to it by now!
Best Moment this week: Hearing Bryson say Caroline's name when pointing to her stocking. Love that sweet boy and can't wait to see him in action as a big brother!
The baby is the size of a: Spaghetti Squash

*Yesterday my blood pressure was 113/72 which is the best it has been at a doctor's office since having Bryson! That was actually really encouraging because I always worry about my blood pressure (which probably doesn't help the situation!).

Ruple Family Photos

Thanksgiving 2011

This year our Thanksgiving was full of family and friends. We first traveled to New Braunfels on Wednesday afternoon to spend a few days with my family. Fortunately we were there at the same time as Amy and Zach, and Matt and Shannon, so we really enjoyed that time at home. On Thursday we went over to my Aunt Kathy's house where my Grandma and several of my extended family members joined us. We had a great time full of washer pitching and entirely too much food. Bryson traipsed through the back pasture with Uncle Wayne, and was so worn out from all of the fun that he eventually came to me and said he was ready to go night night in his car seat. That was a first!

Friday morning (aka Black Friday) my mom and I got up and left the house at 6am to try to catch a few good deals with all of the other crazies. :) Surprisingly we didn't really have to fight any crowds (even at the Outlet Mall!). I ended up buying every gift I needed except for one- and I didn't even take a list with me. I would say that it was definitely a successful trip! 

Here are a few pictures from our time in New Braunfels...

 Grandma and PawPaw

 Just hangin' out in Uncle Matt's boots...

 Friday afternoon we loaded up and headed to Pleasanton to spend a few days with Jason's family. That evening we got to eat dinner with Sandra and Dan. Saturday morning the whole crew came over for family photos. It was quite an adventure but well worth it. I then worked on our Christmas gift for Jason's parents. Here are my nephews hiding part of the gift from Granny...

 ...and just being boys/brothers!

 Jason got to play golf with 15 friends that afternoon and I enjoyed some time with the girls. That night we grilled steaks and my mother-in-law fixed all of the sides. It was delicious. We got a nice surprise when Abby, Wilson, Brooke and David stopped by to see us. It was so good to see them and to be able to enjoy some sweet time with girl friends (even if it was short!). We also got to see Kami, Ruben, and baby Leyna. She has grown so much since the last time we saw her (when she was born in July!).

Bryson and Laynie played so well together. Here they are with B standing on the elliptical machine and Laynie making it go with her arms (B didn't weigh enough to even budge it!).

 And hanging out at the little picnic table...

 I love this picture of Grandpa and his two youngest (for a few more months, anyways!) grand kids. Can you tell how much fun they were having?  :)

Overall we had a great Thanksgiving break and were so blessed by the time we were able to spend with our family and friends. We knew that we probably wouldn't be returning home for Christmas this year, so we really tried to make the best of it.

And, I can't let this season of Thanksgiving pass without listing a few things that I am thankful for. Here goes...

1. My amazing husband who has been so strong throughout this scary season of our lives, but has also been a soft place for me to land. Could not have made it this far without him.

2. My sweet little two-year-old who amazes me every day. What a gift!

3. The support system we have in our families.

4. Our incredible friends who have gone above and beyond over and over again. I am continually amazed at the goodness we have surrounding us.

5. The team of medical professionals taking care of me and our sweet baby Caroline. We truly believe that we are exactly where we are supposed to be and that has been such a comfort.

6. This squirmy little one in my belly, whom we know will be such a blessing to our family.

7. A God who understands what I need even when I don't have the words needed to ask.

8. Bubble baths.

9. Good books.

10. Strawberry Mentos.

Happy Thanksgiving!

Buying in Bulk

The last three weeks have been the hardest we have ever faced individually and as a married couple. No one ever thinks something like this will happen to them, and we were definitely part of that mentality. We survived the miscarriage, and maybe were a little bit stronger because of it. But this? This is still a bit beyond belief.
While the heartache still lingers on, the questions still come, and the pleading with God still happens, I have noticed something else in the midst of all of this.
I have seen God's goodness, firsthand, on so many levels. We are surrounded (and I mean thick!) with amazing people. People who have cried with us, held our hands, taken Bryson, provided meals, and just sat silently with us when the words wouldn't come. People who have loved us--- really, really loved us. Family who have dropped everything to be with us and who have prayed non-stop. We have even seen God's face in emails from people we don't know passed along to us by those we do. The outpouring of love and support has been astounding.

Today I received an email from a friend saying that she had gotten together with others to set up house cleaning for us. Shortly after I got an email with a calendar of people providing meals for us a few times a week for the next two months. Anyone who knows me very well knows that I love a clean house and to plan out meals for my family. The very thought of being away from home for 2 weeks (and possibly 10) is making me crazy! So, this act of people coming together to do these things for us has literally blown me away today.

I am thankful beyond words. I am speechless.

I will have to buy thank-you notes in bulk.

This is a strange place for me. A place of complete heartbreak and fear, but also a place of seeing God's goodness and mercies all around me.

Wow.
Resting in those mercies tonight...

Happy Birthday, Grandma!

My Mom celebrated her birthday in October. I found this cute idea on pinterest (where else??) for a garden/flower bed stepping stone and knew she would love it. A quick trip to Lowe's and we were ready to get started. Jason mixed the concrete and poured it into this plant saucer (after I coated it with cooking spray). Then I smoothed it out and Bryson put his hand prints in it. I wrote a little message for Grandma and then Bryson decorated with "rocks". Voila! Instant birthday gift Grandma was sure to love!

 Final Product!

Happy Birthday, Grandma! We love you!

Preview...

On Saturday morning my mother-in-law had a photographer come to her house to take family photos and this was the face my child made {almost} the whole time!

It was lovely! Ahhh life with a two year old. More to come...

Divine Appointments

This morning after I dropped Bryson off I decided to run into Wal-Mart to see if I could find something I needed for a project for Caroline's nursery. I did not have an ounce of make-up on and hadn't even brushed my hair but decided not to worry about it. As I was standing in the middle of the aisle I looked up just in time to see a woman walk past the opposite end of the aisle. I just caught a glimpse of her but knew that I knew her from somewhere. My brain was in such a fog that it took me a few minutes to realize that she was the mother of one of the patient's that I had taken care of.

This was not just any patient. I started taking care of him when I worked for Dr. Farrow at the wound care clinic. He was paralyzed from the waist down and had severe pressure ulcers. It was not an easy job to do, but for some reason we became fast friends. Then, when I started working for the home health agency he came on our services. All of the other nurses had a hard time taking care of his wounds, so I became his nurse and got to see him every day (this was rare for an RN to do daily visits on any patient). He was kind and compassionate. He loved Harley Davidson. He loved movies and going to Sam's. He had many disabilities and made a trip to the dialysis clinic three times per week. He never complained. He was always happy and had such a positive outlook on life.

He had spina bifida.

He passed away, at the age of 45, about a year and a half ago.

So, when I finally realized who this lady was I knew I had to find her. I searched through the entire Bryan Wal-Mart and eventually found her at the back counter (maybe the layaway section? I couldn't even tell you what she was doing!).

I called her name and when she turned around and saw me there was an immediate smile that flooded over her. She hugged me and asked me how Bryson was doing. I told her that he was doing great, and also told her I was expecting again. Then I gave her the news about Caroline.

Tears filled her eyes and for the first time I was looking at someone who had truly been in my shoes. We talked for a long time---- in front of the Wal-Mart cashier (who listened very intently) and the rest of the people in line. She answered my questions about her son and his specific diagnosis. We shared tears and hugs, and then she told me that she would be praying for us.
I left Wal-Mart without even buying what I originally went in to buy- but I know I got what I really needed.

*****

This afternoon after a great birthday lunch with sweet friends I decided to run by Hobby Lobby to look for the item I was looking for at Wal-Mart this morning. I was searching through the aisle when I ran into the grandmother of another patient I used to take care of.
This little boy was no ordinary patient, either. I used to see him at least twice a week to draw his blood, start IVs, administer infusions, and just check on him. He was 10 when I started seeing him and he is now almost 15! Needless to say I spent a lot of time with him and his sweet family. I made visits not only at his house but at his grandmother's house as well.
I remember praying for this little boy frequently, especially right before I had to do anything that was uncomfortable for him (involving needles, etc...). I remember worrying about him.

I remember looking at his mom with such admiration, and thinking about what an amazing example she is to all of those around her.

So today I saw his grandmother. I have seen her a few times around town over the last several years, but have not seen her in a long time.

I asked about her grandson and their family, and then she asked about my family. Again I recounted our story, explaining what the doctors have found and the situation we are facing. Her grandson receives treatment from Texas Children's Hospital as well, so I told her how often I have been thinking of them with our recent trips to the same place.

She was again so kind and full of compassion. With tears in her eyes she gave me her email address as well as her daughter-in-laws so that I could keep in touch. She said that they will be praying for us, and I know that she will be very faithful in that. What a comfort and a peace that brings.

Right before I walked away I told her about seeing my other patient's mother this morning. She smiled at me and said "These are what we call divine appointments."

*****

I can't explain why I ran into these two ladies today, but I do know that God's hand was in it. I am so grateful for the tiny mercies that give me the strength I need to get through each day.

She PASSED!

My mom and I headed back to TCH this morning for a fetal echo cardiogram. This was one of the last things that needed to be completed, and one of the final qualifiers for the in-utero surgery.
We were pretty nervous because the cardiologist came in after the ultrasound tech and looked at a few things herself, then said that we would go into the consultation room to discuss her findings. After what seemed like forever she came into the consultation room, explained a few things, and then told us that Caroline's heart looked good. She didn't see any abnormalities. What a relief! I cannot explain how good it felt to finally get some good news. She did tell us that there are a few things that they sometimes miss on a fetal echo, just due to the extremely small size of the baby and the changing anatomy after a baby is born (ducts closing, different arteries taking over, etc.). But, overall, NO ABNORMALITIES! Praise God!

We were sitting in the same room waiting for Angel (the nurse) to come in and touch base with us when the Genetic Counselor came in waving a sheet of paper. She said "Good news!" It was almost too good to be true. She showed me the amniocentesis results and we now know that Caroline does not have Down's Syndrome, Trisomy 18, or Trisomy 13 (those were the main things they were looking for).

So, we officially qualify for the in-utero surgery.

This is HUGE and we now just have to decide if the risks of this surgery are worth the possible benefits for our sweet Caroline.

Please continue to pray for us over the next few days as we weigh out this decision (and we think about the possibility of having surgery in 2 weeks!).

Yeaaaaa Baby Caroline!

"Praise be to the Lord, for he has heard my cry for mercy.

The Lord is my strength and my shield; my heart trusts in him, and I am helped.

My heart leaps for joy and I will give thanks to him in Song."

Psalm 28:6-7

And she will be called...

Caroline Grace Ruple

We finally decided on this baby girl's name. We originally had very different ideas for what we would name a little girl, but none of those seemed to fit anymore. So, we searched and searched. We wanted something very feminine and pretty, but also strong. So this is what we came up with. And we love it!

Caroline means "a small, strong woman" and Grace means "having God's favor."

Pretty perfect!

TCH Update

On Thursday we headed back to the Women's Pavillion at Texas Children's hospital for a day full of appointments. We were so glad to have my parents and Jason's mom with us to endure this long and exhausting day.
Our first appointment was with another pediatric neurosurgeon. He, as all of the others, had a lot of really good information. A lot of overwhelming information. I guess the main two things I got out of this appointment were: 1) there is no right or wrong answer- but once we make a decision we have to move forward and not look back and 2) if this were his (the neurosurgeon's) wife and child he said he would not choose the in-utero surgery. Talk about being knocked down! At first he didn't want to answer the question. He skirted all around it. I kept asking until finally he answered. He said that he doesn't think the percentages of improvement are great enough to take the risk of a surgery of this magnitude. I appreciate his honesty more than he will ever know. My dad commented later that he appreciated his honesty as well, and couldn't believe that he actually told us that. The next thing my dad said though was eye opening for me. This man is probably brilliant. He is at the top of his field practicing pediatric neurosurgery at one of the best institutions in the country. He can tell us what he THINKS he would do- but he is not in the situation. This isn't HIS child's future so sure- the benefit might not seem worth the risk. Now we just have to decide if it is worth it for us.
Next we had genetic counseling. When I saw that we had this appointment I expected to get the information regarding the amniocentesis we had scheduled, and maybe for them to take a family history of any disabilities, etc. What I did not expect was for a perky intern to come in, sit right in front of me, and then say in the perkiest of perky voices "So, how is everyone today?" with a huge smile on her face. I think that my expression said exactly what I was thinking and I could feel Jason tensing up immediately. She proceeded to try to have an actual counseling session with us and I finally just told her that we were not doing well, we didn't have a plan, we didn't have to have a plan, and that we needed to basically move on. I was not in the mood for a true counseling session, especially with a 20-something year old who probably didn't have children and was not wearing a wedding ring. I was polite- but very blunt. It was obvious that she didn't really get the gravity of our situation. Luckily there was an actual genetic counselor there who filled in the gaps and helped explain the different things they would be looking for on the amnio and the possibilities of each one showing up. After talking with them we decided to go ahead and proceed with the amniocentesis. We did choose to have the test results sooner (2 days rather than 10) so that we can make the decision sooner on how to proceed from here.
The amniocentesis was not horrible. They don't even numb your skin before sticking the needle in- but overall it wasn't that bad.
Then we met with Dr. Cass the fetal surgeon. After talking with the neurosurgeon earlier that morning Jason said that he wished our parents could meet Dr. Cass. He had been in Barcelona studying this exact procedure so we knew that he was out of the office. When we were leaving that appointment though, we passed him in the hallway. He was just getting back into town and agreed to meet with us that afternoon. Definitely one of the blessings in this situation.
We really like Dr. Cass. He is genuine and kind, and took my Dad's questions like a champ! (haha!) He again explained the procedure, risks and benefits of all of our options, and answered countless questions. I think everyone was a little more encouraged when we left his office.
And finally we met with the maternal fetal medicine specialists. These two ladies play the obstetrician's role in taking care of me throughout this whole ordeal. One of them actually knows Dr. Bertsch (my OB/GYN in College Station) and said that if I have the in-utero surgery and am doing well after 2-3 weeks I could be released back to CS and follow-up with Dr. Bertsch and a perinatologist until delivery. That was very encouraging to me as I am trying not to think about the possibility of spending 10 weeks in Houston.
Whew! That was exhausting just to type all of that! We left at almost 5pm and, due to Houston traffic, didn't make it to Erin's until almost 8pm.
I just have to again say what a blessing Erin has been. At 8pm my child was fed and singing and dancing in the playroom with Mykah, Karsyn, and Mimi. He was happy and comfortable. That did this Momma's heart good!
We also had dinner waiting for us at Erin's thanks to Crystal Patranella. It was delicious and gave us one less thing to worry about.
Today I was talking to Jenny and Kristin at two separate times, and both of them mentioned how neat it has been to see how everyone around us seems to have a specific role in this situation. What an amazing God we serve who knows our needs (even when we do not) and answers the prayers that we cannot even put into words.
I will make another trip to Houston on Monday for a fetal echo cardiogram. If that goes well and the amniocentesis comes back normal (which they have no reason to think that it will not), then we will be candidates for the in-utero surgery. They will want to perform this surgery at 23-25 weeks gestation. I am almost 21 weeks now.
I realized the time crunch of all of this this weekend and we have painted the baby's nursery and are planning on putting up our Christmas tree (since there is a possibility that I will be in Houston for Christmas). There is so much to do!
We want to say thank-you from the bottom of our hearts for all of the phone calls, text messages, emails, meals, help painting, extended dog-sitting, sonic trips, sewing, sweet early birthday presents, and support. We have been overwhelmed and will never be able to express how much it all has meant.
Please keep up the prayers!

Grandfatherly Love

As we get ready to head to Houston tomorrow we are enjoying a house full of Grandparents. Bryson is loving the attention.

I just had to share these pictures (although I'm not sure my Dad will appreciate it).

Bryson and PawPaw had a big time with the stickers tonight!

 And a close-up...

What a lucky little boy.  :)

Beautiful Things.

*Scroll down to the bottom of the screen and pause the music to be able to hear this.

Words to Remember...

Last night we had been trying to get Bryson to go to sleep for close to an hour. He is usually very good at going to bed, but things have been crazy around here lately. We have had company most evenings including grandparents and friends (and you know when the grandparents are here he never ends up in bed on time!).

Jason went into his room and told him again that it was time for night night. He told him that if he would close his eyes and go to sleep he would take him to do something fun in the morning when he woke up (maybe get donuts???).

Bryson looked up at him and said in his most serious little voice,

"To the beach?"

A boy after my own heart! I love that little man.

To brag a bit...

I cannot let this momentous occasion pass without bragging on my boy a bit. Last weekend Bryson decided to use the big boy potty instead of a diaper! I was hosting a baby shower on Saturday morning and had to leave with Bryson in big boy underwear. Jason was less than excited (to say the least!). He kept telling me that he didn't know what he was doing and I told him that I didn't either!

By the time I got home B had a diaper on and Jason told me that this was a disaster! I told Jason that he either needed to get on board or leave for the day. Bryson was ready to potty-train and we were doing it!

Bryson turned two in July and I haven't pushed potty training at all. The few times I've asked if he wants to try to potty on the big potty he has said "No!" That was enough for me to know that rather than making us both miesrable we should just wait until he was ready.

Well, when he was ready--- he was READY! He did really well over the weekend and continued at Erin's house. Erin decided to potty train him and another two year old together since B was set on doing it. He had a little potty chart and received stickers which eventually lead to M&Ms! B loved it!

He has not had an accident in days and is even waking up dry!

Here are the potty prizes we used to reward Bryson for going in the potty:

Big Boy!

 This cracks. me. up. Pay close attention to the 10:10 and 10:20 entries. Our boy- working the system!?!?  Never!!!  :)

Our little boy is growing up!

***I do just want to add that as I have been researching spina bifida I have learned that there are some very mild cases that are diagnosed by accident. I was very concerned that Bryson could have it and we just didn't know it. When I talked to the neurosurgeon about this possibility, he said that we wouldn't really know until he started to potty train and we saw if he had good control over his bladder/bowel function. Bryson had just decided (on his own) to potty train that very week! He had done amazingly! What perfect timing and what a relief for this very tired and worn-down Momma. Thank you Jesus!***

Overwhelmed

Throughout the last week I have been overwhelmed over and over again. I am tyring to take things minute by minute as we try to figure out where to go from here. How is this going to work? Finances? Insurance? The possibility of me being in Houston for 10+ weeks while I have the most precious little 2 year old who needs me here? I could literally scream.

But, there is one thing that has been very clear to us and one way that we have been overwhelmed in a good way. The love and support we have been shown is mind blowing. From emails, to text messages, to flower deliveries, to meals, and friends to just cry with, we know that we are truly blessed.

God has a plan in all of this. We are sure of it. I'll be honest when I say that Jason is a little more sure of it than I am right now. That's just where I am right now.

But we have been shown His love through all of this, through all of the amazing people surrounding us. And for that, I am thankful beyond words.

We have a long road ahead of us--- but as one sweet friend said to me "We all do. We are all in this together."

We covet your prayers and your love during this time. We need each of you in ways that I don't even know how to verbalize right now.

Here is one of the many many verses I am clinging to right now.

“I will never forget this awful time, as I grieve over my (suffering). Yet I still dare to hope when I remember this: The faithful love of the LORD never ends! His mercies never cease. Great is his faithfulness; his mercies begin afresh each morning. I say to myself, ‘The LORD is my inheritance; therefore, I will hope in him!’”  Lamentations 3:19-24

Friday, November 11, 2011

The next morning my mom, mother-in-law, Jason, and I all headed to Houston to begin what would be one of the longest days of our lives. There was no way we could have been prepared for all of the information we received.

The ultrasound was amazing. We got to watch our baby girl wriggle and squirm for almost an hour and a half! Then the radiologist came in and continued the ultrasound, actually showing us what she found when reading the pictures. After that our spirits were a little bit lifted. She said that little girl was moving her legs really well, which could be a promising sign. Her hands and feet still appeared normal at this point which meant that those nerves had not been affected yet (when with this condition they are usually affected by now). Her kidneys were working. The ventricles in her brain were only slightly enlarged at this time. Hope. We saw a little glimmer of it and were so thankful.

Next I had an MRI and we ate lunch. Then we met with a whole team including Dr. Robert Bollo (neurosurgeon), Dr. Darrell Cass (fetal surgeon), and their nurse Angel Krueger. This is where the day got really tough.

1 in 5,000 babies born are affected with this condition.

This malformation occurs on day 27-28 after conception.

No bowel/bladder control.

On and on and on and on.

How do you even begin to hear all of these things? How do you take them all in and grasp what this means for your baby's future?

My heart broke again every time I looked at Jason. I will never forget the look on his face as he fought back tears (and cried openly at times).

Scary news. Really hard to hear news.

No other way around it.

We left their office after a very long visit and completely broke down in the lobby. Out of nowhere Irma appeared offering more support than I every could have asked for. Angel also came alongside us.

The ride home was very long and very quiet. Just trying to digest parts of what they said seemed impossible. Again we were so thankful that our moms were with us.

We got back into town late that night and picked up Bryson from Erin's. Speaking of angels Erin has already been a God-send.

It is amazing to look around and see the specific people that God has placed in our lives and know how truly blessed we are.

Here is the email update that I sent out the next morning:

Friends,

We had a long and exhausting yesterday. We are definitely overwhelmed with the information we received, but feel that we made the right decision in heading to Houston instead of Temple. I had an extensive ultrasound exam and then met with the radiologist who continued the exam and explained her findings. She said that our little girl has great leg movement at this point which is somewhat encouraging. Her hands and feet are still normal at this point, meaning that those nerves have not been affected yet. Her kidneys are functioning, and all of the normal formations of the brain are there. She does have the signature head shape of a spina-bifida baby due to the spinal cord being pulled down out of the lower back. I then had an MRI. After that we met with a pediatric neurosurgeon and a fetal surgeon, as well as their specialized nurse. Her name is Angel and what an Angel she was for us yesterday. We spent several hours with this team discussing all of our different options. The official diagnosis is myelomeningocele spina bifida. At this point we know that our little girl will not have bowel/bladder control, and that her legs/feet will be affected (from paralysis to decreased movement- we will not know until much further down the road). So at this point we have a few different options. There was an extensive study done at three hospitals in the US (San Francisco, Vanderbilt, and CHOP) in which surgery was actually performed on the fetus while still in the womb. The fetal surgeon at Texas Children's was involved in that study. We are a candidate for this surgery. It would be performed between 22-26 weeks with the hopes of the baby remaining in the womb until 34 weeks. The major hang-up is that this surgery has never been performed in Houston, or in Texas for that matter- only at the three other places I previously mentioned. There would be an extensive team involved in this surgery, including (I think) the fetal surgeon's colleagues coming here from San Francisco. This surgery would repair the lesion on the back. Then it would just be a waiting game until she is born. I would be in the hospital at least a week and then would have specific restrictions until she gets here. I looked both of these surgeons in the eye individually and asked if they are ready to perform this surgery here. Jason and I were both very relieved with the answers they gave. We know that we are in the right place. This surgery would reduce the chance of the baby having to have a shunt placed in her brain after birth by about 40% which is ultimately one of the main life-limiting characteristics of this defect. There is also a chance that it could help with leg movement and bowel/bladder control- they just don't know yet. We would be the data for this study! Of course there are risks with the surgery, both for the baby and for me.

The other option is to have a c-section at (hopefully) 37 weeks and have the surgery to repair the lesion at that time. The baby would remain in the NICU for several weeks, depending on further complications that might arise. Much of this though is a wait and see game.

The last option is termination of the pregnancy. While, honestly, this might seem like an easier road, we know this is not the plan God has for our little girl. I know I have said this already, but we prayed and prayed for this baby. We are trying to cleave to the fact that God knows what he is doing, and that this little girl will be (1/2 of) the joy of our lives.

Please keep praying for us. I don't know what to even ask for specifically at this point, but now you have the information and know a little bit more about what we are facing. We are exhausted (there has not been much sleep around here since Wednesday), overwhelmed, devastated, and a bit lost, but we know that we will get through this.

Last night Jason and I finally had a chance to really talk before we went to bed and we decided that whatever comes at us, whatever special needs this little girl has, we will adapt. It will become a part of us and our family, just like when we adjusted to having Bryson and all of the challenges that any new baby brings.

Next week I will have several more appointments in Houston including an amniocentesis, fetal echo of the heart, meeting with more of the surgical team, and transferring to one of their obstetricians.

We want to say thank you to each of you who have been in contact with us throughout these last couple of days. I personally have not really responded to emails/texts because I don't know what to say to people. Please know I am getting them though and that I am comforted beyond measure to know what a great support system we have. Our moms are here with us (they made the trip to Houston with us yesterday). We are blessed beyond blessed.

Our God is the Creator and Healer, and we know that he is holding us and this little girl in his hands.

Thanks so much for your continued prayers. As my Dad said to me on Thursday, we know that prayer works, so we are giving it a chance to.

All our love,

Courtney and Jason

Prayer Request 11/10/11

Here is the email update that we sent out on Thursday night. We wholeheartedly believe in the power of prayer and wanted as many people interceding for us as possible.

Dear Friends,

We received some very concerning results from our ultrasound today. The baby has spina bifida. As I type this I can't even believe it. We are in shock and don't even know where to begin with our questions. We have appointments all day tomorrow at Texas Children's Hospital in Houston including an ultrasound, MRI, and a meeting with a neurosurgeon. They have a whole spina bifida team. We are going to the best of the best, but are completely shaken and unsure of what the future holds for our family. Please pray specifically for God's guidance in the decisions that will be facing us and for health for our sweet baby girl. We know that He is the ultimate healer. We prayed and prayed (along with a lot of you) for this baby, and know that ultimately God has his hand in this. Please pray that we will find some comfort in this as we navigate these next few days. We love each of you.

Courtney and Jason

Thursday, November 10, 2011

The next morning I went to work and celebrated our little girl with the ladies I work with. One of them (Mechelle) had thought it was a girl all along, and had nicknamed her Gertie. We all ate breakfast in our conference room and I just soaked in every minute. As the morning passed, I still couldn't get rid of that nagging feeling that something was wrong. By the time lunch rolled around I assured myself that if anything had been wrong I would have already received a phone call.

At 1:34pm I got the call. I actually answered the phone (which I don't usually do) and it was Dr. Bertsch. I put her on hold, closed my door, and tried to get myself together. She was so nice, and slowly gave me the news.

"The baby has spina bifida."

I can still hear her saying those words- I doubt I will ever be able to shake that from my head. I was speechless. Absolutely could not find words. Couldn't swallow. Couldn't think. I wondered if she could hear my heart beating through the phone.

Then my auto mode must have kicked in. I don't know a lot about spina bifida, but somehow I managed to ask a few questions. She said that it was at the lumbar level, and that she didn't know a lot other than that. She was referring me to a specialist in Temple. I remember telling her that I had been taking my folic acid regularly for months. This isn't supposed to happen if you do that. Dr. Bertsch said that folic acid helps reduce the risk, but that there is always a risk. She handled the situation with a great kindness and professionalism. She told me to call Jason and to let her know if there was anything at all she could do for us.

I hung up the phone and cried. I didn't really even know what was happening or what we were dealing with, but I was completely overcome with emotion. I cried and cried, until someone lightly knocked on my door and came in and held me as I cried. Charli offered to call Jason or to drive me somewhere, but I said I could manage. I got my stuff together and left.

On the way home I called Jason and my Mom. Jason came home immediately. We cried and held each other. I will never forget that.

As we were sitting on our couch, in the dark, talking and crying, I had a clear thought. I (vaguely) remembered Dr. Bertsch saying that she was referring me to a specialist in Temple and that they would be calling me by Monday to let me know how we should proceed.

We don't have Scott and White insurance. We don't have to go to Temple. When I realized this I started to research spina bifida specialists. I was immediately directed to Texas Children's Hospital in Houston. They have a complete spina bifida team. I called and got Irma on the phone. I'm still not quite sure of Irma's official title, but she has been literally a life-saver for us already. I cried and she talked. She literally counseled me on the phone that afternoon. She said that I needed to get them the results of my ultrasound.

I got the results sent over from S&W. Funnily, the medical records clerk's name was Dearest. The nurse also helped to facilitate that transfer of records. When the records were safely transferred a left a message for Dr. Bertsch to call me as soon as possible.

When Dr. Bertsch called I told her about us not having Scott and White insurance and not HAVING to go to Temple. I wanted her personal and professional opinion, and I point blank asked her if this was her and her child where she would go. She told me the pros of going to Temple (she knows the people she would be transferring me to, it is a small but personalized setting, etc), and then agreed that TCH could really offer the "full court press." She said that she would support me in whatever decision we made; this was our child and we had to make the decision that was right for us.

I was so thankful for the way that she talked candidly and freely, and made me feel like she was on our side.

During my call with Dr. Bertsch, Irma from TCH called back. She had received our records and set up appointments for all day on Friday (the next day). It was at that time that she told me the nurse's name was Angel, and gave me direct phone numbers in case we had any questions before we got there in the morning. She offered for us to stay in the Ronald McDonald house. Everything started rolling faster than we ever could have imagined.

We called our parents and all four of them were in the car and here by dinner time. Lots of tears were shed that night. Lots of pleading with God. Lots of sobbing with words that wouldn't come.

God knew what we needed. We needed arms to hold us up- He sent our families.

What a blessing our families have already proven to be.

Where to begin???

I have so much on my mind, and such a heavy heart this morning. I have been dreading writing this post, mainly because I don't know where to begin. But, I want to continue to document our daily lives, like I have since we were blessed with our sweet baby boy over two years ago. So, here I am, trying to take the first step, praying that it will get easier as we go.

*****

Last Wednesday, November 9th, we had our big ultrasound at Scott and White. During the exam Jason and I were so nervous, wondering if we would be adding another rambunctious boy to our crew or a sweet little girl. Jason really wanted a girl, and I asked him while we were in the waiting room if he was going to be disappointed if it was a boy. He said that he definitely wouldn't be disappointed, but that his main wish was for a CALM baby. We laughed and were soon called in to the room. The sonographer took a few looks and then it was time to reveal the gender. Jason and I were looking and looking, and I thought it looked like a girl, but was a little nervous to say it. Jason said "It's maybe a boy..." and Becky, the sonographer said "...or a _________." We knew right then it was a girl! I was a little bit in shock and asked her to check again just to make sure.

We were both smiling from ear to ear after that point. The sonographer continued to take the usual pictures. Being in the medical field I can distinguish certain things on an ultrasound that maybe a non-medical person would not be able to. After a while Becky said that she was going to have to call in one of her colleagues to get a few different shots of the heart. She said that Scott and White had initiated new protocol with new pictures of the heart, and that she wasn't great at getting them unless the baby was in the perfect position. She said this colleague of hers had been working at the S&W in Temple and was used to taking these certain pictures.

So, she stepped out and I asked Jason if he thought anything was wrong. He said no, and I went to the bathroom (finally- my bladder was about to pop!).

The next sonographer came in and immediately started looking at the baby's brain/head. I commented that I thought she should be looking at the heart. She said she couldn't do an ultrasound without taking a peek at the whole baby. She then proceeded to spend most of the time on the spine. Again I said that she was making me nervous and she said that the doctor would discuss everything she was looking at, reminding me that she couldn't tell us anything. She was pretty good at joking and acting normal, but deep down I knew something was wrong. On a lighter note- when she was trying to get these certain shots of the heart (which I think she probably really did need to get), the baby kept moving and was not cooperating. She said "This baby is FAST!" Jason just rolled his eyes as the prospect of a calm child was squashed. She also said that everyone always says the baby is sucking their thumb but they never really are. She said in her 20 years of performing sonograms she had only seen 2 babies actually sucking their thumbs- and our baby was number 3!

After she was finished she said she needed to get the first sonographer back in the room to print out our pictures and make our DVD. We were waiting in the waiting room and the second sonographer brought everything out to us.

We left, over the moon about our little girl, but with a little nagging feeling of gloom over what they weren't telling us. Jason kept assuring me that everything would be fine. We told our friends and family the good news- a sweet little girl would be joining our family!

*****

That afternoon when I picked up Bryson I told him that he was going to have a baby sister. His response?

"I want a brudder!"

He had been saying that all along, but I didn't really know if he was just picking a word that we had said (brother/sister), or knew what he was talking about.

He seemed excited about the baby and I was just so excited to have two babies to love on and call our own.

*****

That night Jason and I didn't say a lot- I think we were both in shock to be having a girl. He kept asking me if it had sank in yet. It hadn't.

It was so great to know that this baby was a girl. To know that we could now pick a name. It just made everything so much more real. It made the sickness and sadness that we had endured up to that point completely worth it.

Even though we were both still a little bit worried about the results of the ultrasound, I slept pretty sweetly that night.

A boy and a girl...