Friday, October 31, 2008

Wednesday News

First of all, I want to thank you all so very much for praying for our family. Please please please continue to do so. We probably need that now more than ever. I am too drained to try and type it all out, so I am copying and pasting an email David wrote and sent to his family in response to his sister Mary questioning about our appts this week. I think he covered just about everything.

I'm sure you are all wondering the same thing Mary is so I figured I would just write this to all of you at the same time. I really didn't feel like talking on the phone yesterday after the entire day of meetings with doctor's so I'm sorry I left you all hanging.

I would say that our last two days have been good and bad all at the same time. The doctors and staff at Texas Childrens are great. Everyone was very knowledgeable and very nice. They spent a lot of time with us going through what we can expect from the surgeries and the next 10-20 yrs of Brooklyn's life. That was probably the good part. They confirmed that the opening in her back starts at L4. The spina bifida clinic lead doctor said that the L4 location is pretty good from the standpoint that anything higher on the spine than that she would not have much confidence that she would be able to walk ever. So she said with it starting at L4 there is a pretty decent chance that Brooklyn may be able to walk eventually with braces. Unfortunately it was a lot of talk about the same things we already know, which is that we won't really know much until she gets here and goes through the surgeries. They will close up her back in the first 2 days after birth, and then watch her for about a week to 10 days to decide if she will need a shunt or not. They said 90-95% of the kids do need a shunt. The MRI and ultrasound showed that her bladder was very full and one of her kidneys is bloated which means she is likely not able to pee right now. They think she will need to cath pretty soon after birth and she will likely have to continue that for the rest of her life to ensure that she doesn't mess up her kidneys.

The MRI also showed several new things that weren't too encouraging. The doctors have told us not to worry about it right now because a fetal MRI is not the most reliable thing since it is a picture through Jodi, through the uterus/amniotic fluid (I can't spell ???, get over it), and into the baby. That said, it is hard to see the things we saw in the report and not worry about it. There is a portion of her brain that controls visual processing and various other things that seems to not be developing correctly. This damage could result in blindness, retardation, stunted growth, etc etc. A bunch of crap I don't really want to think about. Brooklyn also shows to have an ovarian cyst that is about 2 inches in diameter.

All of that said, the neurosurgeon said that the brain formation is pretty inconclusive. He said that they have had kids whose brains looked perfectly normal, but didn't function properly, and kids whose brains looked really wrong but functioned just fine. So he did his best to tell us to not worry too much about it and they would do tests when she is born. They will be able to do a better MRI on Brooklyn when she is born to assess these things better than they can in a fetal MRI.

Our next doctor's apt is Nov 6th with Jodi's doctor. I assume we will talk all of these things with him then, and set a date for the c section.

So status of Brooklyn is still quite questionable.
Status of David and Jodi is decidedly discouraged, frustrated, sad, and angry. I'm not looking for anyone to talk us out of these feelings or tell us it is ok to feel this way. I am just letting you know where we are at.

We'll keep you posted as we learn more.

So, there it is. I'll admit, he and I both are really struggling right now. We have prayed and prayed for months now about our daughter and her physical issues, and we went in on Wed only to find out that our worst case scenario is actually way worse than they originally thought. That blow is really hard to take, and we are just trying to figure out ways to take it. So... I hope it is ok that I ask this... please, if you would like to leave us a comment, just tell us you are praying for us. Nothing more. There is no need to say anything, really, in one of these situations where no one knows what to say, and all our hearts really need to hear is that we have prayers going up for us at a time when we personally don't really know what to pray or really feel like praying. We're confident that God is all over this thing, and that is what is getting us through. Thank you for everything.

Much love~ D, J, R, & B

Thursday, October 30, 2008

Sweetest Little Butterfly EVER

Got to "Twick or Tweet" at school today.... she was SO excited! I couldn't get over how precious she was, and I couldn't decide which pics to put, so I put them all. :)

Breakfast party at school. Massive sugar high on its way with the donuts combined with candy... nice. :)

I'll have to wait on writing reports about yesterday. Bear with me on that. Until then, enjoy our cute little "budder-why!"

Monday, October 27, 2008

Spilling My Guts...

Ok, you have to bear with me on this one. Usually, I am only a picture-posting blogger, but today, I need to ramble a bit. But I'll put pics in too in case the mood needs to be lightened a bit. :)

We are really asking for big prayers from our warriors this week. Tomorrrow morning, I go in to the Children's Hospital for an ultrasound and an MRI on Brooklyn. (I know I have to be perfectly still for an MRI, but how am I supposed to keep HER still?!?! No idea how that will work.) But anyways, this will all benefit the neurosurgeons that we will see on Wednesday. They will hopefully get a really good look at her and be able to tell to a better extent what her surgeries will entail. After the neurosurgeons, we will see the spina bifida clinic doctors, the NICU and nurses, and have an appt with a neonatologist all on Wed. So, it is a big week.

Of course, our prayer is that we go in and they find nothing. They look at our wonderfully made little girl and say, she has no issues that we find. Oh, how blessed that would be!!! We want there to be NO DOUBT that our amazing God just took this situation and eliminated the problems from her. But we also know that God is way bigger than we can even fathom, and that His plan for her may not be what we believe our hearts' desires to be. And we will praise Him wholeheartedly no matter what the answers to our prayers are!! We ask that you join us in this, for the next 5 weeks and beyond, but specifically for the next 3 days.

I'll be honest, I have been looking forward to these appts for 3 months now... to get more answers and see face to face the doctors who will care for B. But now, I am freaked out beyond measure. I think it is mainly because we will be getting a major dose of reality this week. Since B was diagnosed 3 months ago, it has been this nebulous concept that I've tried to educate myself about and wrap my mind around. But this week, I have a feeling it will hit closer to home because of these meetings, and sometimes I wonder that whole "can I really do this?" thing. I have no doubt whatsoever that God can heal Brookyln, and I pray and pray and pray that He will! But, He hasn't come to me and said He will. So, this is the road we take... to use all the resources He has given us to be as prepared as possible to be the best parents we can be. I pray God forgives my doubts and fears and strengthens my faith day after day... for a long time to come... because I feel so inadequate to be this kind of Mommy! So scared! How can I be the best Mommy if I am scared of it?!?! Anyways, this is the rollercoaster my heart is on, and I know I have rambled on, but I guess I just needed to get it out. SO... if any of that made sense... I just ask that you pray for David and me and all that we will face as Brooklyn's parents.

In the present, we ask for prayers for the appts this week, and for Brooklyn's doctors to be absolute geniuses!! Oh, and that I remember to ask all the questions we have come up with! For the future... well, I'll have more specifics I'm sure after Wed. But pray that she keeps growing and kicking right on schedule. Please pray for Reagan, that God gives her an extra dose of fabulous big-sisterhood... this is gonna rock her world to an extent. (Praise God for Reagan's wonderful school that she loves so much... she'll be there while we are at the hospitals.) Like I said, after Wed, I'll report back and give an update on what we've learned... and it'll be a doozy of a post I'm sure. :)

Ok, thanks for letting me spill my guts. As promised, here are some pics of Reagan's last week or so... cutie pie. :)

This is her "Cheese" face for the camera these days.
I wanted pumpkin patch pictures in this outfit, but she was home sick on Pumpkin Patch day at school with a fever. So, we settled for front porch pics. This is her "do you think I can lift this?" picture.
Too heavy. :)

She decorated her pumpkin at school... gotta love glitter.

Sweet girl!!!
I am a sucker for every time she puts on David's boots!!! She thinks she is so funny!
Little Saturday morning football-watching with Daddy. LOVE this. :)
Here is where they pretended to be asleep so I would quit taking pictures. I'm not that easily fooled...
On Sunday, we were invited to the Fall Festival o' Fun at SIL and BIL's church. It was a gorgeous afternoon, and fun was definitely had by all. Aunt Mary was sweet enough to help R paint more pumpkins.
Oh, what kid doesn't love a great bounce house?!?! She had a BALL!
But it got really hot and sweaty with all that bouncing, so we went WT with it and stripped her shirt off. And of course, took time out for sweet kisses for Daddy.
She made new friends in there.... she gravitates towards the older kids. It is so cute! And they were really great with her.
This face sums up her fun:
Showing off her skillz to Aunt Mary.
Taking a little time-out from bouncing for throwing the football with Uncle Turbo.
Someone had out their adorable little Lab puppies. This was R's first time to hold a puppy!!
He was wiggly, but she liked him for the few moments they had together.

And this is this morning at breakfast.... Sometimes when she wakes up, I swear she got extra beauty sleep. This was one of those days. Maybe only a Mommy can think that, what with this bed-head and all, but she is extra gorgeous today... and I love her bed head. Not that I am biased or anything!

Sunday, October 19, 2008

Reliving the Good Ole Days

This last Thursday was one of my favorite Thursdays in a long time. :)
My dear, sweet friend Tracy flew into town not just to see me and spend the night, but to go with me to the blessed New Kids on the Block concert. Tracy and I grew up together, and back in the junior high years, she and I and several others were quite fond of NKOTB. To say Tracy was quite fond if the understatement of the century!! So, upon hearing about the reunion tour (God bless them!), we decided to get tickets to the Dallas concert. But I ended up having to sell mine since Brooklyn and I are grounded to Houston. BUT.... Tracy refused to let me miss it! So, she bought us tickets and flew down here to go with me! True friendship, people!!! Although, she admits it wasn't really sacrifice for her. It ended up being the first of 3 concerts she is attending!!! :) Awesome.
And let me tell all you doubters out there that these boys are good! Seriously! It was a great show, and they sounded fabulous! And Tracy surprised me... she originally lied to me about where our tickets were, so I was SHOCKED to find our seats in the middle of the 13th row!!! Can't even BEGIN to tell how great the seats were. And you'll be able to tell from these pics that Tracy also has a fabulous camera. She took all these pics, which totally outdid the ones I took, so I'm posting hers.
Joe is still such the cutie.

This one is pretty dark, but you can see Donnie in the back, which was the point. This pic doesn't do justice at all to our great seats, though!
And yes, our boys can still dance! Even pushing 40!

Unfortunately, they found the need for dancing girls in the background. So not necessary.

Thank you Tracy SO MUCH for coming down and going with me. HUGE thank you to hubby Jerrod too!! (And see her blog for more pics.) I haven't had so much fun in ages!!! Sounds sad, but it was so fun!! We screamed like we did back when we were 13. Brooklyn didn't know WHAT to think probably!!! Oh, and Aric will appreciate this... right as they came out, Tracy pulls out her phone and texts Jerrod one word... "BAR!" He wrote back simply, "You're a dork." Made me laugh. Yes, we were dorky, but it was so fun. You can find it on youtube, ladies, if you didn't get to go to the show!! :)

Tuesday, October 14, 2008

Just A Couple of Things...

First bit of news is that we finally have a date set for the marathon event of seeing Brooklyn's doctors at TX Childrens. On Wed, the 29th, David and I will probably spend all day there, meeting with the Spina Bifida clinic, the neurosurgeons, the neonatologists, NICU nurses, and who knows who else! They are sending me a packet about it all, but I am SO looking forward to this day. At least I think so. I'll give more info later of course, but please put that date on your prayer calendar. In the meantime, I'll see my doctor again on the 21st (happy Bday Amie). Lately, appts with him have been boring, so I am looking forward to another ultrasound appt at some point so we can see her again!!!

As for Reagan, here are some pics from the last week. On Saturday, during the GLORIOUS TX/OU game, we had the Isbells over for the day. And the kiddos did some pumpkin painting. Good times.

I stripped R out of her UT orange, even though the paint was kid-proof (supposedly). Brandon ended up with several colors on his clothes, so I hope they came out!
She always concentrates so hard! Emily was just laughing at Brandon... he basically just made a few dots on each of his pumpkins and was done.
But I think he liked it anyways!
Just a few random shots of my goofy girl....
We had to spend a significant amount of time removing these before her bath! Weirdo, makes me smile.
In case you needed a closer look at her sticker handiwork. The next day, my tummy looked similar as she was "sharing her stickers with Baby Sister." BUMMED I didn't get a picture of that!
Just one of those Mommy Moments where I thought she looked so cute, I had to take her pic. This was right after school.
Silly girl has found a new favorite TV-watching spot.
Lastly, Her Royal Nakedness in her fancy dress-up shoes helping me put away the dishtowels from the laundry. :) Oh, how I love this girl!