36 weeks

Battley is 36 weeks today!  I am going to update you on our cardiologist appointment we had yesterday.  I am still in shock so I hope that this will make sense...I'm not 100% sure it makes sense to me just yet.

A few weeks ago when we met with our Palliative Care doc he made this comment to me:

I feel like we have been preparing you and Adam for losing Battley early and should have maybe been preparing you to have her for a longer time.

I suppose it feels just like it sounds...Adam and I were preparing ourselves (not that you ever really could) for being "those people who lost their child" when maybe it looks like we are going to be "those people whose child requires 24/7 care".   I don't want this to sound like I was not overjoyed.  I WAS!  I suppose I was just in shock.

I put a pin in that thought all week to see how the tests yesterday looked.  HOLD ON TO YOUR SEAT!!!!!!

I could NEVER have prepared myself for what we were told yesterday!

In medical-ish terms, Battley's heart has pumped so much extra blood to her lungs that her lungs have developed a higher pressure...this is now preventing too much blood from going to the lungs (this is what the banding surgery would have accomplished).  She is now NOT a candidate for the banding surgery or a closure of the VSD (even if we could find someone willing to do it).  Now let me try to translate this:

The doc said that 20-30 years ago...before people understood Downs Syndrome (an extra 21st chromosome...remember B has an extra 18th) doctors would not operate on kiddos who had VSDs.  They were considered terminal diagnoses.  Doctors saw the same thing happen in those patients (lungs being overloaded and pressure going up to stop flow of blood) that just happened to B.  Over time these patients would have a hard time breathing.  Our doctor said that some of these kiddos lived to be 6, 10, even into their 20s.  She said that this is a SLOW developing problem.  Of course, as with the problem B had before we will cross that bridge when we get there.

To the parents of a child without T18, this would probably be devastating news.  But...THAT'S NOT US!  This is absolutely amazing!  Pinch me!  Years!  (Catherine does a cartwheel)  God's miracles don't always come tied up in beautiful packages the way we wish for them to come...sometimes they come in a very unexpected way!

I am still processing all this, but I am trying to be more open with the blog so I wanted to share.

Now for some Housekeeping:
Thank you all so much for emailing me about the g tubes!  It's great info and also kinda fun for me to hear about your families.  We are waiting on an appt with a GI doc to see where to go from here.

Check out a pic of B having her first EKG and one of her yesterday...in the first pic she was 6 days old.  Those are just stickers on her and this doesn't hurt at all.

I'll have to post the pics later...not working right now.

C

Tuesday update

Our doc appt is tomorrow morning with Battley's cardiologist.   They will do an ultrasound of her heart to see if there is any change in the hole there.  We were told that Battley would start to lose muscle strength and quite the opposite is happening lately.  Of course our prayers are for a miracle and that the hole is closing on its own.

Rosa (B's nurse) and I are trying to figure out what is going on with the spit up.  B seems to be on a pattern of one episode per day around 11:30pm.  Our current guess is that it may have something to do with her being overly tired.  I tell Rosa that sometimes I feel like I am in a huge control room with knobs, buttons, and switches all around and I'm constantly trying to figure out the perfect combination.  I am hopeful that we are able to figure something else out tomorrow to get this under control.  

In other news, we are on our way to getting back to a normalish sleep schedule.  B has slept for 2 nights except for the spitting up parts.  We have also cut out her 3am feedings for 2 nights now...so far so good!

I have a favor to ask of anyone who reads this and has a child with a feeding tube...I am doing some research on which g tubes people like.  I've gotten some great feedback on the Kimberly Clark Mic-Key G tube.  I'm trying to think of every question that may come up or I may need to ask when talking to the gastro doc.  So, if you have any good info please email me!  catherine.terhune@gmail.com

Hmmm...what else?  We really enjoyed having H home from school with us last week.  It's always kind of a bummer when he has to go back.  We have done a little decorating for Christmas.  We always have a real tree and our artificial one.  This year we are decorating the mantel and maybe no trees...for sure we are not getting a real tree.   Gotta go feed B, but I will try my best for an update tomorrow or Thursday for sure.

C

8...EIGHT Months

Not only did we give thanks for all our many blessings yesterday...we also got to celebrate 8 months with Battley Cate!

The past few weeks have been hard. I am NOT complaining but simply being honest. We have had lots of spit up (it's not really any better) which upsets B and of course we don't want her to be upset, little to no sleep which affects everything, and the soon to be real need to sell our home. This sounds very materialistic, but it's more of the fear of leaving the place we have made all our memories with B.

All week I have been thinking of and focusing on our blessings instead. They far outweigh any of the above issues. God has been so good to us to allow us all this time with our gal! It seems Thanksgiving came at just the right time for me.

Here's B in her turkey day outfit...whipped up the day before by none other than Amy...yes, she did the turkey and the monogramming:



And doing some stretching:


I haven't shared much lately about Battley's medical condition. It is for a few reasons: One...I would rather focus on the joy of having her here with us and all her accomplishments and Two...I cannot handle the advice sharing seems to invite (maybe this is due to lack of sleep...maybe not). I really want this blog to be real so I will try to share a little more.

We had a good doctor's appointment on Monday. The doc thinks she is doing "well" and that we "may have some more time". This is incredibly exciting for us, but I have to live in a balanced world of reality and hope. It's just because I know myself and how carried away I can get with exciting news. So...this was just an appt with her regular doctor. We are planning a return visit to see her cardiologist very soon. We haven't seen her in a few months. This will give us an accurate picture of how her heart is actually doing. After that we are planning a trip to see a gastrointestinal doc to look at ditching the NG tube (tube in her nose) for a G tube (would be placed on her stomach). There is a small chance this could be done without her being put to sleep now that she is bigger...we would definitely consider doing this soon if so. Side note: she is 9lbs-10oz.

As for a surgery decision....I know I have left a lot of you in the dark on this if you haven't asked...Adam and I pray about the right decision every day. We want to make the right decision for Battley...not for Adam and C. If it was for us we would have already done it. We do not have a peace about either decision, but are thankful for the time we seem to have to keep praying and waiting on peace. I know lots of people have opinions about this, but I promise you that you cannot say what you would do unless you have walked our path.

Okay...I don't want to be ugly and I hope that none of that came out that way. I will make an excuse for myself here and just say that I'm trying to share but words aren't coming easily to me...sooooo tired!

Here's a pic of B in her first tutu that Betty gave her:


Now...I have to get to work plotting how to get B to sleep at night. We are considering cutting out the 3am feeding again since we are up at that time anyways and mix it with waking her up in the morning...ahhhhhhh...I feel bad for even saying those words.

Happy Pink Friday
C

Oh yeah...we renamed today Pink Friday at our house. Why you ask??? Because last year on black Friday we were planning for losing B and it felt very black. This year feels very pink and sparkly!

34 weeks

B was 34 weeks on Thursday!  She had a good week.  We are still battling the spit up...it's better than it has been in the past, but still a BIG issue.  

We are still working on getting her to sleep at night...it's been a LONG week of waking up all night long.  She seems to be in a pattern of spitting up around midnight each night for the past few days...poor gal.

H is having Fall Break from school this week!  Yay!  

B and I have a doctor's appointment on Monday.  She is going to see her regular doctor and hopefully we will get some good advice on the spit up.  

C

Smiling Battley

A video from B and I hanging out last night...the guys went to see the new James Bond movie. The noise in the background is Mac annoying Zeke.

C

33 weeks

Here goes another random post:

It's so hard to find time to blog sometimes!  Battley has had her days and nights mixed up all week.  I have a hard time trying to keep her awake in the daytime because I know her heart needs rest.  We had plans for dinner with Betty last night though so I figured she may stay awake for that and then sleep all night...it worked!  Whew!  I'm hoping that this will get her back on a pattern of sleeping at night and only napping in the daytime.

Our gal is 33 weeks old and we have a new month on the calendar (Nov).  I have this Linnea Designs poster calendar in the kitchen.  It's so exciting when I get to put another month in that we will get to celebrate with B!

B weighs 9lb-6oz

A requested pic of her with her Daddy-O:

Last Sunday B and I put a new FIRST in our book.  We watched a movie together.  Amy let us borrow this:

B fell asleep, but I filled her in when she woke up around 2am...haha!  She definitely enjoyed the music...and she always enjoys rocking with her Momma.  It was just the BEST movie!  I highly recommend it to everyone...even if you don't have kids.  I'm sure we would have watched a movie together before, but all our movies are on VHS from when H was little!  Our VCR broke a few years ago, and I'm not sure you can even buy one of those now.

On the way to get H from practice:

The episodes of spitting up are getting better!  Her tube came out earlier this week when my mom was over so we got a few pics:

C

Brother Love

Battley loves LOVES H so much! It's so funny to watch her when we talk about him or when he's around her. She lights up like no other time. Yesterday when we got home H brought her inside and took her out of her car seat. He sat down and I snapped a few pics of what happened.













Have you ever seen so much hair? Wow! They obviously get all that from their Momma!

We all had a few hours of sleep in a row last night...yay! B is feeling much better now that we added the Miralax to our routine...she has spit up a few times since, but I feel like we are on the way to even fewer times soon.

C

32 weeks

Battley was 32 weeks yesterday!

B had a few licks of a sucker the other night:

I tasted the sucker when she was finished and it was sour...bad mom moment...oops!

I think we have conquered the reflux problem.   In its place we have spit up from other issues.  Prune/apple juice seemed to work for a few weeks...problem came back.  Then we tried another avenue and now that seems to be finished working.  My goal for the next few days is to try to find something else that will work.  Every time this poor gal spits up she screams really loudly because it hurts, turns red and sometimes even needs some extra air, and then needs a nap because of all the extra work her heart is doing.  Not fun!  Fingers crossed we can come up with something that will work.  After a call into the doc this morning we are going to try some Miralax today.

On Wed she dressed up in her costume.  Of course we didn't go anywhere...we just sat around and talked about how cute she is.  Halloween is not even close to my favorite holiday...if you can even call it a holiday.  (Adam wants to know why he hauled 3 boxes out of the attic if it's not even a fave...men!)  It was super cool for me though because it's another holiday I can remember the memories we made with Battley.

C

This time last year

It's Thursday and I try to do a weekly update, but today we are going another route.  B is 32 weeks old today though!!  I actually wrote this a few days ago, but decided to post it today after a  call from a friend this morning.   My hope in sharing this is that someone who reads this will find comfort in the fact that others have gone through similar experiences.  We were given hope when we were told to have none so I'm hoping to spread hope...

We have shared this in whole or part with many of you, but I felt like sharing it again for those who haven't heard the whole shebang...

I don't remember the exact date (I've switched from my beloved Blackberry to an iPhone since and lost all previous calendar items) we went to find out if Battley was a boy or girl. H and Adam both went. We were so looking forward to planning for a pink or blue nursery. I think if B was a boy we were going to name her Jay. So here is what I do remember:

It was mid to late October. We found out B is a she!! Then Adam and H decided (since it always took/takes forever at my doc office...which is another story...talk about torture) to leave for school/work.  Side note: I found out later that Adam got his first ever speeding ticket that morning because he was so excited. I met with Dr G (my awesome doc) and he told me he saw 4 "markers" for a chromosomal abnormality. The doc referred me to a fetal specialist, Dr Perry, who is so busy it would take 3-4 weeks to see him. Are you kidding me? Can we say torture? I decided to take the "option b" also which was a simple blood test (I am almost positive it tests for extra 13, 18, and 21st chromosomes...I could be wrong). My doc advised that there are lots of false positives, but since we could get the results back in a few days I went for it.  I made it to the lab okay. The lady who was drawing my blood (which I am already uneasy about bc earlier in the year I had had a miscarriage and had to have blood drawn every other day for 2 weeks...more torture sitting in that dang office...I hope you know I am exaggerating when I say "torture". I know it's really not but it felt like it at the time. And before that I had to go quite a number of times to have blood drawn because we were trying to figure out what turned out to be that I don't ovulate...sorry for all the personal info, fellas! I guess if you stuck with me through see thru pants and back seat pumping in public then this is nothing.)...so we were talking about the blood lady...she gets VERY close to me...close to my face with hers...she wraps that giant rubber band thing around my arm, opens the needle, and says "so does down syndrome run in your family?".  I lost it.  Crying like a baby.  I asked her to please just finish so I could go.   She kept asking if my doc knew how upset I was.   I nodded yes but couldn't get out any other words.   I dried it up in the bathroom when she untied me let me go. I made it all the way to the checkout, back through the waiting room, downstairs, through the parking lot, and into the car before I lost it again.  That's when I called Adam, my mom, and Shannon...see that story here.

2 days later someone called from the office to say I tested negative for everything. I felt guilty for crying to my friend. 

Before our visit with Dr Perry I felt okay for a few days.  Then something just didn't feel right. I knew something was really wrong.  Unless Jesus himself tells me differently, I know that He used Shannon to prepare me before that next appointment. 

Nov 15, 2011 That was a day I'll never forget. We had a late afternoon appointment. First a sonographer looked around for at least an hour...maybe an hour and a half. Then Dr Perry came in and looked for another long while.  I tried to read anything on their faces without them thinking I was staring.  Nothing.   I knew they saw something.  We decided to do an amniocentesis (for info purposes only) that day.  It wasn't really even a "decision"...we just did it because it felt right.

November 16, 2011 I tried to make calls that day for work while we waited for the results.  I was having a chat with a customer who asked me a direct question that I am totally used to, but I was caught off guard that particular time.  I burst into tears and tried to apologize and let him know it wasn't what he said...all while backing out the door. I made it down the block, called my manager to say I was done for the day and maybe the week, and called my customer back to apologize again and explain myself.  I went home to be still.  Adam came home to stay so that I wouldn't be alone when the doc did call.

November 17th, 2011 No call from the doctor. Adam and H went to tennis that night. At 6:30 pm I was sitting on the sofa in the living room...the right side...I'll never forget.  Dr Perry called. I had to call Adam 5-6 times in a row before he answered. I remember looking in the top of H's closet for my Teddy bear (I could leave this part out but why would I do that) while I waited on them to get home.   I also remember getting sick while I was trying to call my mom.   I never found the bear and I think Adam found me on H's bathroom floor.   I don't remember much after that. 

November 17, 2012 I plan to spend the day snuggling with Battley Cate Terhune. God IS Good. He has brought us through at times the hardest year and the best year. 

***

I'll try to post Battley's costume pics tomorrow.  Here's a pic for today though:

C