40 weeks a few days late

We are still here!  I figured it's time to blog since you are all texting that you are worried about us...haha!  B was 40 weeks last Thursday.  Not too much has happened in the past week.  Here's a little recap:

* H started physical therapy.  For now he will go 3 days a week.  He is doing really well and is semi mobile again.  The first 3 days after surgery were pretty rough.  He will be on crutches for another 2-3 weeks and then have 1 crutch for a few weeks.  Other than him tiring easily, he is good!

* B is up to 10lb-4oz.  She did weigh more, but the spit up has been keeping her from gaining for a few days.  I am beyond frustrated with not having a solution at this point.  We don't even have an appointment to see a doc about it yet. 

* Part of the reason, besides taking care of 2 kiddos, that I haven't blogged is that we are getting our house ready to sell.  We thought it would take a few days, but everything takes us longer.  It's a big project!

* We had a very nice Christmas.  We stayed home and had my parents over.  

I do have 2 exciting things to share:

1.  Battley is getting her own ROOM!  It's been a work in progress for a few weeks.  I kept Hayden's old crib in storage at my parents, but we lost the hardware.  It took a few trips to the hardware store and the Play Pen to make it work, but Battley has her own bed now!!!  She hasn't slept in it yet, but it is ready for her.  We probably won't move her until she doesn't have her NG tube anymore.  We are still working on the room...I'll work on a pic to post of the progress.

2.  Battley laughed!  She has been doing it for a few days.  I didn't notice at first b/c it was so subtle. Remember she just got strong enough to cough and scream...and boy can she scream now.  It's so nice to hear believe it or not.  But the laugh...oh my goodness!!!!!!!  It is something I never dreamed we would get to hear from her!  It's so cute!

Current projects:

* getting the house ready to sell...currently trying to figure out what color paint buckets contain the paint we need for the hallway and trim so we can have more mixed

* rehabbing H's knee...he has exercises he does 4x per day that he needs help with

* trying to figure out how to start therapy with Battley...another frustration b/c this isn't easily done or else I just can't figure it out

* finishing B's room

* finishing my Christmas shopping...that's right...with everything going on I didn't have enough time to get it all complete!  Some folks are getting happy new year gifts!  or happy mid-jan gifts!  haha!

C

Merry CHRISTmas from the Terhunes

Update

We are home.  The doc was pleased with everything.   H was super loopy in recovery...I made some videos!  He is resting now.  Thank you all for your prayers.
C

39 weeks

B is going to celebrate today with her daddy.  H and I are off this morning for his surgery.  I'll do my best to post tonight.  

Here's the pre-surgery recap though:

wings for dinner the night before...we actually went to the restaurant and ate them!

Adam woke us all up at 5am because the wind was blowing so hard he thought there was a tornado.  We spent 5 minutes in the laundry room and then all went back to bed because we were too tired!

C

Surgery Update

H's MRI was today.  It showed a torn ACL like we thought and NO other torn ligaments...yay!  He is scheduled for surgery next Thursday.

B has a doc appt next Monday.  It's just an appointment to meet with the doc and talk about what to do next, appts to make, docs to see, etc

Happy Weekend,

C

38 weeks

My gal is 38 weeks old today!  I am so HAPPY to report that she is sleeping through the night again! We have had 3 or 4 nights of her sleeping most of the night.  We have also cut out her 11pm feeding, so that helps us get to bed at a decent hour.

Thank you all so much for your kind words and prayers for my speaking gig yesterday!  It was a blessing for me to be asked to do that and I very much so enjoyed hearing the other mommas' stories.  I felt a little out of it with everything going on around here, but it worked out well.

Have you ever had one of those days where you just get angry?  I had a night like that last night.  I got out for a few minutes to do basically start Christmas shopping.  I went to put my phone down and it bounced off the console and landed in a cup of water!  Really?!?!  Detour to the phone store...I have to get a new phone.  

Timmy: Mrs Terhune, I see you are eligible for a 99cent upgrade to an iPhone 4.

Me: Super!  Let's do it.

Timmy: Well, Mrs Terhune, unfortunately we are out of the iPhone 4!  I can ship you one that will arrive to you in 4-5 business days OR you can purchase an iPhone 4s for only 99dollars!  Plus the 40 dollar activation fee and the ...(I didn't hear this part because my ears were probably pouring blood right out onto their floor)...FEE (I heard this word)!

Me: Ahhhhhhhhhhhhhh!  

I really didn't do that, but I really wanted to scream!  Normally I can talk my way into a discount, but it wasn't happening for me last night!  

Luckily today is a NEW day...a day I can wake up and sing Happy Birthday to my sweet princess...a day I can count my many blessings!  Thank you, Lord, for new days!

MRI tomorrow on H's knee...praying for good news!  And we are still praying for guidance on what to do about this house.

C

Monday update

I just have a few quick updates:

We planned to spend our weekend getting the house ready to put on the market.  We haven't decided that that is the right thing to do just yet, but all our projects happen on weekends and we only have 2 of those days a week.  H had a soccer tournament this weekend also...so we did what we could between games.  Unfortunately Sunday morning he hurt his knee during the first game.  He laid on the ground in pain.  That is not like him so I knew he was hurt.  

We made our way to the local 24 hour clinic and on the way were reminded that it is FLU season.  If you have ever seen us in public with Battley, you know we have a routine.  One baby toucher...one (everything else) toucher...no cross contamination.  We use antibacterial wipes, carry our own pens to sign things, and keep B in her stroller so as to try our best to protect her.  I don't touch anything with my hands and then touch her...it's even more interesting when it's just she and I in public.  

When I went to check H in to get his knee seen about, the wonderful ladies understood that I didn't want to expose B (she was home with her daddy, but expose her through us) to all the sick germs.  The waiting room was FULL!  They were so kind to let us go right back and we were in and out in less than an hour!  I shared the blog with them, so if you are reading...THANK YOU!

Then Battley's awesome friend MA got us in this morning at 7:45 to see the orthopedic doc!  She even met us in the waiting room and stayed with us until we got back in the car.  Huge help because it was pouring rain!  Thank you, MA!!

All that to say that H is on the schedule for surgery for a torn ACL next week...boo!  Any prayers you can say for him would be greatly appreciated!  Not only is his knee hurting, but having an injury is hard on a teenage boy that is as active as he likes to be.  He is already counting the sports seasons he will miss.  

It's been an interesting day of helping him instead of having him to help around...he is planning to milk this for all he can.  He's already had wings (his fave meal) one time.

Now, another prayer request and something I just want to share:

I have been asked to share Battley's story at UMC (local university hospital) this week.  The point of the meeting is not to hear Battley's story, but to use her story and a few others as an open discussion starter.  I am extremely honored to be asked.  The topic is HOPE.  My hope in this is that my words be inspiring and helpful to someone listening.  I have to admit that I am also pretty pumped about any chance to share that it IS possible for a baby with T18 to be born alive and enjoy life.  So often people get their hope (or lack of hope) from statistics.  We found our hope in God and through my awesome T18 momma friends.  

Gotta run...lots to do!

Here is a funny pic I will leave you with:

Notice the bones from wings...yeah, he never leaves anything on the bones!  The sheet over the sofa is because he just played a soccer game and was sweaty!  and do you like his "tv tray"?  It contains ornaments for a tree I def decided today is NOT going up this year.  If you're wondering what the spray bottle is for...that's for keeping Mac (pug) from putting his hands on the sofa.  But isn't that love soooo sweet!!!  Love them!

C

37 weeks

Here we are on Friday again...I always shoot for a post on B's weekly birthday, but we see that it doesn't happen often.  One day I will just accept that and stop all the apologies...maybe...ha!

What a week we have had!  We are still a bit shocked about the news we heard last week.  Since we spent such a long time expecting to lose B and enjoying each moment we have had with her, we never made plans for more of a future than a few days or weeks at a time.  We have realized this past week that we put a LOT of things on the back burner and have a lot to do now.  The first things on the list are to figure out what to do with our jobs (we are both employed full time even though I handle all my business from the home office) and our house.  We are currently praying like mad for the Lord's direction on both fronts.  Please pray for us to hear God's direction for these things. 

So...Miss Battley:

* weighs 9lb-13oz...her weight is fluctuating a bit with our new feeding schedule but trending upwards so we are happy

* is fed 5 times a day now instead of 6...this may be super boring to read a list but wanted to share:

7am: 105ml of 24calorie per serving Similac formula (this is between 3 and 4 ounces) and a dose of Lasiks, Digoxin, Phenobarbital, Prilosec, and Milk of Magnesia...feeding her always takes around 2 hours

11am: 105ml of formula and a dose of Miralax

3pm: 105ml of formula, a dose of Miralax, and a dose of Milk of Magnesia

7pm: 105ml of formula and doses of Digoxin and Phenobarbital 

9pm: dose of Milk of Magnesia

11pm: 60ml of formula (this we run slowly over 3-4 hours if she is sleeping and don't need to have her sitting up for)

and to top it off we throw in some gas drops along the way as needed

* wears size 2 diapers and 3months clothes...all the preemie clothes are officially put away

* loves to be snuggled, talked to, read to, and sung to

* still digs music...toddler Pandora

* loves bath time

* is working so hard with her arms to get them to do what she wants them to do.  Hopefully we will be able to begin some form of therapy with her soon!

C

EKG pics

Pics from her EKG at 6 days old and then from this week...she's 9lb-11.5oz now!

She was checking out the lady with the stickers.

C

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

Monday morning video

I am sleep deprived and probably grouchy so I'll post a video of B:

C

31 weeks

Battley is 31 weeks!  This week she:

* is really working hard on sucking just her thumb...she has to straighten it out for this...she is so determined and wants zero assistance

* weighs 9lb-2.5oz

* is eating 80mL of milk every 4 hours (except 11pm and 3am when we just use the largest syringe we have...60mL) and a yummy gerber apple and prune juice mix once a day

* tried drinking out of a bottle...I literally put 10 drops in it and about 4 made it in her mouth...she liked it but wasn't sure what was happening...it was just a little test to see what she would do

* got her first costume...she may wear it tomorrow so I'll post a pic if she does

* had a visit from Santa and Mrs Claus:

C

Lately

We had a really good week this week.  Battley and I actually even ran a few errands alone on Thursday!  Then Friday after school we ran to the shoe store with H...this kid has more shoes than I do!  

B has been feeling really great this week.  Her tube seems to be bothering her a lot more though and as she gains better control of her hands she is learning how to pull it out faster since her momma and daddy are always looking.  She has learned how to rub her face on something to get the tape to move over and make an bigger space for her finger to snag it out.  She can do it so quickly you don't see it coming now!  We tell her she is being sneaky.

She is loving this new play mat we got her.  The pugs think we got it for them though so it's a chore to keep them away! 

Sorry some of my pics are so dark...B doesn't like bright light so we sit in the dark a lot.

She sat in the bumbo for a minute...she can't hold her head up for more than a few seconds at a time just yet so this was just so see if she liked it.

Saturday H had a cross country meet in Starkville.  The original plan was to come back home after the race, but we decided since we were there we should stay for the game.  H had a good run...4th place:

So after we had some lunch and hung out a while I chickened out and went back home...couldn't be away from my gal for that long!  Meem and H stayed for the game.

So anytime I go anywhere Adam sends me pics of B while I'm out...we usually send him a pic when he's at work too.  He sent me this one of her passed out:

I was home in time to snuggle her while we looked for H and Meem on tv!

Happy Sunday!  

I have another shirt pic of my friend's daughter (she and H went to preschool together...ugh time flies...that seems like yesterday) taken from the new Harbor House on the coast (new b/c it was destroyed by Katrina)!  Beautiful...the girl and the view!

C

30 weeks

Today my gal is the BIG 3-0!  30 weeks!  

We had a long night last night and were up bright and early this morning for a few things we had to do.  I'm just stopping in the office for a few minutes to throw a few bills into the mailbox and answer the questions you left on the last post...

Does B ever use a bottle? No

Will she ever?  It's not in the plans now...who knows what God has planned, but for now the answer is no.

Because of the large hole in her heart and her open palette (the roof of her mouth is open to her nose) we chose not to even really try the bottle with her.  We probably spent a total of 10 minutes in the hospital with a bottle.  It didn't go well so we didn't push it.  We are SO thankful that all we have to contend with (machine wise) is a feeding pump.  We could be hauling a large oxygen tank everywhere we go (we do have a small one we take with us in case of emergencies and have them at home too, but rarely use them).  Sucking and swallowing are the 2 of the things babies do that require the most physical exertion...by "doing this" for her we are saving her heart from working overtime.  T18 babies aren't known for their skills in this department anyways and many that we know of use either a tube in the nose (NG) or a G tube that goes into the stomach.  The open palette is just icing on the cake for reasons not to do a bottle...the milk would come out of her nose which would be no fun and painful.

What's new in Battley's world this week...She:

* weighs 8lb-13.5oz

* is ticklish on her feet...oh my gosh this is so stinkin cute!

C

PS- I love to hear from you...thanks for the questions!  Robin is wonderful (she made Battley's dress for her dedication)!  And it is SO touching to hear that you are praying for our gal!  THANK YOU!

Milk

Some kids have asked me how Battley knows when she's getting milk. I love the questions that kiddos ask...they are so sweet wanting to understand! Our little "nieces" are used to B's tube now, but they had lots of questions in the beginning. Anyways, back to the milk...we all know when our stomach is getting full. Battley knows when it's milk time anytime she has milk. She does the cutest little faces and sucks like she is drinking milk...such a smart gal! She's started doing this almost chewing like motion too. I managed to get some of this on video this morning.

I hope this video will work for you.

C

Friends with Shirts

I have 2 more Battley shirt pics to add.

First is Battley's nurse. She loves B so much she sent us this pic of her from St Lucia! We love her!



Then our awesome soccer friends...she is wearing her shirt, but he is wearing a bracelet...he wears it to school everyday!! That's so sweet...um I mean manly and thoughtful for a teenager! Love it and them!



Yay for the weekend! We swapped rugs last night. This may sound so trivial, but it makes a BIG difference in our day to day life. When we were in the hospital it was super stressful for me. I really believe that my stress was stressing B. Being cooped up in our bedroom was stressing me, and I want to do everything I can to keep B feeling easy. All good now!

B weighed 8lb-12.5oz last night. We have a baby scale that we keep in the same place so it doesn't mess with the calibration. I try to weigh her before her bath time at the same time of day. It doesn't always work since B is in control of her own schedule. The idea isn't so much to see exactly how much she weighs but more that she is either gaining or staying steady. We don't want to see a decline in weight.

It has been so long since I had a baby that I didn't remember many of the details about having an infant. B still has her feedings by NG tube (in her nose) and is fed every 4 hours around the clock. It takes an hour and 15 mins at a minimum (that is really flying) to feed her each time. Sometimes it takes all 4 hours depending on if she is awake or sleeping. I totally forget that this is different than other babies because it's what we do every day. It wasn't until I was answering questions from a friend the other day that I realized that.

Happy Weekend to You!
C

29 weeks

This has been a rough week. I try so hard to be positive and count all my blessings...I have tons to be thankful for, but this week has still been hard. Sweet Ava Grace, our friend with T18, left to be with Jesus. I know she is having a blast, but it is hard for those left here with empty arms. Please say a prayer as you are reading this for her family. I know they need comfort right now.

I've also had cabin fever this week...big time. We are due for a change up around here. B and I spend most of the day in the bedroom. She naps on and off and it's a cool place that's not too sunny (her favorites). We have a grasscloth rug in the living room that is rough on feet so we never sit on the floor. The guys are going to have to swap it for one from the other room this week so we have somewhere softer to hang. We got B a play mat she has liked wiggling around on lately...she can almost roll over, but I don't think she would ever want to. We put her on her tummy once in the hospital and she acted like she couldn't breathe...probably couldn't. Hopefully a change of room scenery will help!

B is 29 weeks old today! Wow!! She is having a good week this week. Her breathing is more labored than it was a month ago, but in Battley fashion she is a happy camper...always smiley! She is up to 8lb-11 or 12oz now. We have officially put all our preemie clothes in a bin (except for a few nightgowns). She is loving the cooler weather when it's not sunny! I've never been much for cold weather, but I am looking forward to more chilly days for B.

C

28 weeks

We celebrated 28 weeks this past Thursday!  My Gramma was in town so we got to spend some good time with her at H's soccer game.  Adam sat in the car with B since there have been so many reports of west nile from mosquitoes...also because she doesn't like the weather just yet...still a bit too hot.  It's that time of year again where multiple sports have multiple practices and games and we spend our evenings and weekends on the go.  Usually one of us stays home with B and one goes with H.

Hopefully I can get a real post out sometime this week.

C

Happy 6 Months Party

Battley's 6 month birthday party was wonderful!  Let me first say that I do not and did not have time to plan a party.  When we had B's 100 day party we literally made lemonade and grabbed an ice cream cake.  My friend Sam did everything for this party!  She picked everything up, decorated, and then took pics for me during the party! 

A few pics from the party:

And then there's Amy...she ran over the morning of the party to drop off this onesie she whipped together that morning.  She had a look around and when she came back for the party she brought the party hat (she made all of this) and icing to fix the cake.  I have the most creative friends!

That's her fixing the cake.  Why fix it?  I ordered a plain white iced cake with pink fondant letters on top...I got something totally different.  It looked great when she fixed it!

 Smiling B:

The pic above I am just showing because if you look on the side of the fridge you can see B's handmade birthday cards she received earlier in the day from her friends L & N...we LOVE them!

and I finally have a pic of Sam to add!!

Thank you to everyone who was able to come!  It meant so much to us!  Battley got some adorable preemie outfits and some good books (okay...we read them first) to donate to some of the places that are special to us.

Thank you to Sam, Amy, and my mom (who made some of the food too).

We had these bracelets made for all our awesome prayer warrior friends and family:

I have to give my friend Stephanie credit for the "team Battley" idea!  We do have some left and would be happy for you to stop by and pick one up if you would like to sport one!

 

Not only was the 22nd B's 6 month birthday...it was also our 5 year wedding anniversary!  Adam and I did go to dinner together that night to celebrate.  It was the first time since the moment B was born that one of us has not been with her.  Her Meem and H watched her, and of course everything went well!  Well...that is until we got home and I got sick.  I will not tell you where we went because it is our favorite place and I refuse to believe it was the food.  Anyways, Adam and I have done a LOT in our short (but it seems like waaayyyy longer) 5 years.  We would NOT still be standing without God in our lives.

...

Just had to add this pic because I love it so much...we ran over to Sweet Dreams this week to have B's footprints done:

C

27 weeks

It's Thurssss-dayyyyy again!  Happy 27 weeks to Battley!  

For the past few weeks when people ask me how old she is I would say, "almost 6 months" and now I can say "6 months"!!  Woo-hoo!!  This is always followed by a confused look and "oh, she must have been a preemie!"  Sometimes I tell people our story and sometimes I just smile.  This always seems to be the same scenario anywhere we go.  Sooo...I stole an idea from my friend Julie and had some small cards printed with her name and our blog address.  This way we can share with everyone how good God has been to the Terhunes without tying up the check out line (that was an example...Battley doesn't actually go to many stores).

So...Battley's 6 month birthday party...I am working on a post...it's just in my head so far...does that count?  It was such a wonderful day.  We were so honored that so many of our friends and family could come.  More on that later when I have a minute.

We decided after talking to Rosa that we could try to cut out the 3am feeding.  Our first night was Saturday night.  I'll make this story brief.  It's Thursday and we are back to the 3am feeding.  Battley gained a lot of weight when we did that, and she woke up ready to hang out each of the nights we were on this new schedule.  We decided that just because of the rapid weight gain that we were going back...the extra sleep helps too! 

Other stuff:

She is having a little bit of reflux (I thought we conquered this one) this week...boo!  We are working on fixing that today. 

She weighs 8lb-9oz

gotta run...I got through more than I thought I could.

C

oh, I'd like to point you all to my friend Amy's blog...this is for her daughter Ava Grace (remember I've asked for prayers for her before...she has T18 like Battley and is such a little firecracker)...she needs our prayers for healing: www.sweetlittleangelgirl.blogspot.com

26 weeks

just a video for today...when the camera shakes it was because she kicked my hand...she was so excited!

C

Party Deets

Saturday, September 22, 2012

1pm

Our House

6 Month Birthday Party for Battley

NO GIFTS, Please!  This is just a fun way of celebrating 6 wonderful months!  If you feel that you just can't make it without a gift, please bring a preemie outfit or a good book (for any age child).  Battley will donate the preemie outfits to the NICU at Baptist Hospital where B was born and books to the Palliative Care team at Batson...both special places to us!

C

25 weeks

I had to do another post today since B is 25 weeks old today!

Battley:
Wakes up every morning happy and smiling
Likes to stick her feet out of the covers (just like her momma)
Weighs 8lbs-3oz
Has 70mL of milk every 4 hours
Likes the bouncy seat for a few minutes at a time...the swing too
Takes naps in the boppy pillow sometimes
Likes toys that make crunchy noises
Frogalina is her favorite (frog doll)
The car seat is growing on her and she naps in it when I play music in the car now
We love the toddler Pandora station and listen all the time
Loves to be rocked and snuggled
Smiles when we make funny noises
Does Not like the red dragon (named by our friends the Roberts...it's the bulb syringe for noses)
Is super happy about the weather getting cooler so she can go outside more
Loves bath time
Is a big cuddler
Still loves to be read to, talked to, sung to
Has the best brother that loves her so much
Pays no attention to the pugs
Has very long eyelashes
Is loved by so many people


I read a quote today that I really like.
When I started counting my blessings, my whole life turned around. -Willie Nelson

So...party on the 22nd. I'll post some details ASAP. You're ALL invited (unless you are sick...we will send you some cake and a get well soon wish)!

C

Bulldogs Love Battley

So Amy was quite the traveling evangelist a few weekends ago!  She came over on Monday after the first Mississippi State University (Go Bulldogs!!) football game with a photo book for us.  I had to make a video so that you could see all the hard work she put into it.  Of course it made me cry that she would do this and now we have such a great memory forever!

H and I lived in Starkville for 4 wonderful years when I was in college...it is probably my favorite place and holds so many great memories for me/us. 

Amy made this sign for the game:

Then she took it to the game and had different fans hold it.  Then she said it just kind of spiraled from there and she took it all over town to our favorite places to have pics made.  She got to tell so many people about Battley and how God loves her (and THEM!!) so much!  She even talked total strangers into wearing her and George's T18 shirts for the pics!
 

Please excuse my annoying voice!  I know I can't sound like this in real life!!  Hahaha!

How cool is that!

B is having a super week.  She is so happy in the mornings.  Here is a pic of her yesterday right after she woke up.  I just love that smile so much!

C