Friday, July 6, 2012

I've Moved!

I moved my blog here:  It's a little more user-friendly there (you don't have to set up an account to comment, etc.).

Same title and everything, but new website.  I'll be taking this one down soon, but just wanted to let y'all know in case you'd like to follow me there!

Wednesday, July 4, 2012

Now What?

I knew I would do this... I post this long explanation about what's going on with Demi and then I'd take forever to post something else (because I have so much extra time on my hands, right?!).  I'll try and fill y'all in on what's been going on with us the past few weeks. 

We've been going to lots of therapy appointments (feeding therapy and physical therapy).  I've started calling them "Therapy Thursdays" because all of our appointments will be on Thursdays so hopefully we won't have to drive to Houston more than one day a week!  And we can go ahead and schedule other appointments that same day so we can get it all done in one day.  Sounds fun right?!  Demi is a trooper though while I tote her all over TCH, plus I have an excuse to get me some Starbucks!  And if you know me at all, you know that is verrrrry important!

She got her "button" put in for her feeding tube a couple of weeks ago.  For a month after her surgery, she had this long tube thing that was kind of a hassle.  This is the second time she's had this, since they ended up having to move her G tube site over a little bit during the last surgery.  It has to heal for about 4 weeks and then they yank that out and place what's called a Mic-Key button in that is alot smaller and really easy to operate.  Yep, that's as painful as it sounds, and no fun at all to watch.  But she only has to have that done once, so she should be good to go now.  We also had a great checkup with her GI doctor.  Her upcoming appointments in the next few months will include a checkup with the plastic surgeon (he will fix her cleft palate) and her orthopedic surgeon (to see if she needs another procedure on her feet when they fix her palate), along with her regular pediatrician and therapy appointments. 

The most exciting thing I can share with you is the progress we've made with her feeding issues!  Hang on, I'm going to go knock on some wood before I tell y'all about this... Anyway, so before Demi's first surgery, she had back-tracked ALOT and would only take about 5 - 10 mL by bottle per feeding, and then we would tube the rest (each feeding is 180 mL).  So she was barely taking anything.  We think part of the reason was because she had an NG tube (the kind that goes in your nose to your stomach) and that makes it harder to eat.  This was irritating her throat and she got to where she wanted nothing to do with the bottle.  After her first surgery, where she had the G tube placed (the kind that goes straight to the stomach) she worked back up to taking about 10 mL each time.  Well, after her surgery in May, she worked up to taking 20-30 mL by bottle each feeding.  So once she got to where she consistently took 30 by bottle consistently for about a week, I went ahead and bumped her up to 40 just to see what happened.  And she took it, no problem!  After a few days of that, I bumped her up to 50.  Now we are up to 60 and she's been taking that consistently the past couple of days!  Plus she seems to be doing a little better with baby food.  This is the MOST progress she's ever made, so as you can imagine I am super excited!!!  My mind is usually consumed daily with trying to figure out ways I can help her out with feeding.  Literally.  So after almost 9 months of trying everything possible to make things move in a more positive direction, here we are!  I am still confident that she won't be on a feeding tube forever, but I can't predict the future.  But what I can do is pray about it.  Alot!

Most of all, I've been feeling very thankful lately.  Thankful that Demi is here and healthy for the most part, thankful that we have 2 sweet and helpful 4-year olds,  thankful for a husband that holds us all together (I could write a novel on that one!), thankful for family and friends who are always willing to help out.  I could really go on forever.....
I'll leave you with a few photos of stuff we've been doing the past few weeks.  We've been busy!

At the zoo with their friend, Paisley (aka Baby Paiswey)!

Madeline feeding some giraffes.  This was SO cool!

Hannah brushing the goats.

Demi playing with her toys on her mat.  Her favorite thing to do!

Happy 4th of July!  Notice Madeline's swollen eye (on the right).  She got bit by a mosquito the other day right on her eye.  Yep, she's the same one who had TWO black eyes in the past month.  Poor girl can't catch a break!

Hannah and Demi playing.

Demi's first time swimming!

Me doing what I do best!

I'm thanking you, God, from a full heart, I'm writing the book on your wonders.  I'm whistling, laughing, and jumping for joy; I'm singing your song, High God!  Psalm 9:1-2 (from The Message)

Thursday, June 14, 2012

Our Story So Far

So I've been meaning to start a blog for a while and I'm just now getting around to it.  My hope is that this will be a way to keep family and friends updated on what's going on with Demi's medical stuff, and might also be a kind of therapy for me where I can get some stuff off my chest. 

First of all, let me clear up any questions about what's going on with Demi (or at least I'll try to!).  I'll try to make this short, but it's pretty complicated.  Demi was born on October 6, 2011 after a perfect pregnancy and very smooth delivery. 

She spent 3 weeks in the NICU because of feeding issues and other problems that the doctors kept finding.  Here are some of the things they had discovered:  she had a cleft palate paired with a small jaw (called Pierre Robin sequence), very large soft spot on her head, a small brain bleed, retinopathy of prematurity in her eyes,  laryngomalacia which caused noisy and labored breathing, pulmonary stenosis in her heart, rocker bottom feet, and an umbilical hernia, failed hearing test 3 times, among other things.  There were also a few physical traits that the geneticist noticed that made him question whether there was an underlying chromosome issue that was the cause of all of this.  In order to find that out, there is a blood test that can be done but it takes a while for the results to get back.  So the first 6 weeks or so of Demi's life, we spent our time googling and driving ourselves crazy trying to figure out for ourselves what was going on.  It was the hardest and scariest time in my life, to say the least. 

Finally her blood test came back and revealed that she has what's called an UNBALANCED TRANSLOCATION.  Hence the name of this blog.  I'm no geneticist, but I'll try to explain what that means!  We are all born with 23 pairs of chromosomes, and if anything is out of balance within those chromosomes, it causes problems. For example, you may have heard of other disorders such as Trisomy 18 (having three copies of chromosome 18 instead of 2), or Down Syndrome (having three copies of chromosome 21). Each individual chromosome has what's called a long arm and a short arm, and it can be broken down even further than that if you want to get even more specific.  With Demi, a piece of the long arm of chromosome 18 broke off and attached to chromosome 7.  So she has too little on 18 and too much on 7.  This is so rare that there isn't even a name for it.  Hopefully I didn't just confuse you more, but I am pretty open about everything so if anyone ever has any questions about anything I am happy to try and answer them. 

What does this mean for her and her development?  Not even the doctors can tell us that.  All they could say was that she would have "possible feeding problems, learning problems, and developmental delays".  Basically, you find all of the problems that she has physically and treat them as they come up.  Pretty much her entire body has been checked and it seems that we have found all of the issues so far.  Now it is just a matter of treating them.  Some of the things she was born with have corrected themselves (such as the eye problem), and some she has had surgery for.  When she was about 2 months old, she began getting her feet casted all the way up to her legs to straighten out her feet.  She got her casts changed out weekly up until 4 months, when she had surgery to place a pin in her feet and straighten them out some more.  During the same surgery she had a g tube placed so that she wouldn't have to have the NG tube any more (the one that went in her nose to her tummy).  I could write a whole other blog on how that surgery went and feeding tube issues, but I'll spare you all of that for now :-).  At 7 months, she had another surgery to fix a hernia from the g tube incision and they also had to move her tube over.  Another long story.  At 12 months, she will have her palate repaired and may possibly need another procedure for her feet.  Hopefully that should be all of the surgeries she will need.

As far as developmentally, she is definitely behind for her age.  She is now 8 months, and is not yet sitting up or crawling or whatever else babies normally do for her age.  Honestly I don't even read all of the "what babies should be doing each month" articles and stuff because she is going to do things on her own time and it doesn't matter to me.  However, she is smiling, laughing, holding toys, and doing lots of other "normal" things that babies do.  Most of you know she is on a feeding tube, but she does take some by mouth.  I am confident that when she gets her palate fixed she will eventually get to the point where she will no longer need the tube.  She definitely WANTS to eat, she just physically CAN'T right now.

Whew!  There's a VERY short description of what has been going on with us for the past 8 months.  Our life has been filled with endless doctor appointments, medical bills, and scary things that any parent should not have to deal with (how about inserting a feeding tube down your newborn's nose!).  But it has also been filled with more JOY than I could ever imagine!  I wouldn't change a single thing about what has happened to us.  Demi has so many people who love her, including her big sisters who can't get enough of her.  Jarrod and I also have so much support from so many people, and incredible doctors working with us throughout this process.  We have made the choice to not sit back and be depressed about all of this, and instead to embrace it and find the positive in every situation.  Although we of course have our low moments too.  It has been amazing to see how God has put certain people in our lives and made things happen for us.  That's a whole other subject I could write a book on!  I'm sure I'll share some of those experiences on here for you to read.  I will try and keep y'all updated on what's going on with us as best I can!

But those who hope in the Lord will renew their strength.  They will soar on wings like eagles; they will not run and not grow weary, they will walk and not be faint.  Isaiah 40:31