Battley is celebrating being 14 weeks old today by being extra snuggly! I love it! We have had a check up at the doctor's office and a date with Betty since our last post. All is going well with the reflux now too! Yea!
I'd like to share something exciting with you...
Ava Grace O has celebrated ONE week of life now! In fact, she's 10 days old as I type this. She is still in the hospital (in the NICU). The O family does not live in Jackson...they live 2 hours away from the hospital. (By the way...this is Mississippi! I know some blog readers don't know us and I get this question a lot.) Not only does the O fam have the expense of having a baby; now they have the expense of an extended stay in a hotel, eating out, and other things I'm sure I don't even know about! To help with these expenses, their friends are selling Tshirts. Here are the deets copied from Facebook:
I am having the Southern Belle company to make a Southern Belles love their Trisomy 18 Babies. This is a fundraiser for Amy and Family to help with medical expenses. They will come in Pink or Green (I think it's Lime Green). Adult S-3x Youth xs-lg. I have a black and white draft of design. Ill get it uploaded asap. Taking pre-orders now! 16$ We are placing an order now, but will place another the first of the week once we have enough for the next order. Thank you so much! it will take approx 3 weeks to get them printed is what I was told, but I am checking on putting a rush on them.
*** Now...I know some of you aren't "Southern" but that's okay! I'm not a big tshirt wearer (although lately it seems to be what fits), but I'll be sporting one of these for sure. And 2 other random thoughts for today: * Twilight is good! * I promise Adam and H don't wear their sunglasses all the time! I guess they have just been doing lots of things outside lately.
Battley is 3 whole months old now! That was as of the 22nd, which was last Friday. I am a little late. It's very hard to blog sometimes...it's just been busy around here.
Let's catch up:
* B is still doing continuous feedings. We are happy to report NO reflux in the past few days! Praise the Lord! We will start to move back to a normal feeding schedule in the next few days.
* It's VERY hot here...if you don't live in MS just think THICK! The humidity is almost unbearable. B is very sensitive to bright lights and being too warm. We have pretty much stayed inside and home for the past 5 days...except for a few quick outings.
* Adam and H got out on the water for a few Saturday. We have talked about taking B, but it's just too hot right now. (if you look closely, the pic is all messed up...Adam used photosynth and sometimes it doesn't put the pic together correctly)
* B and I are reading Twilight. I know I'm about 3 years late on it, but better late than never.
* We had a doc appt today. B has been gaining weight like she should so we just upped her dosage of medicine and added a new one to help slow her heartbeat down. Other than that, it went well.
* Adam got this pillow for B the other day. I sent him in the store looking for a "minky dot" pillow I saw. He found the right thing. We were laughing that he now knows what minky dot, wubba nub, and binka mon are!
It's Thursday...you know what that means! Battley is another week old! She is 13 weeks old. Sometimes I still feel like I am dreaming and need to pinch myself. We were really hoping to get 30 mins with her when she was born, and look what a surprise God had in mind! He is Good!
We tried to speed up some feedings today, but it's still early for too much. We were able to shave 15 mins off her feedings every 4 hours so we are thankful for that! It's amazing what all you can get done in 15 mins!
Hayden and I took B to the pool this afternoon. Then we had date night tonight! Hayden and I that is...ha! We played tennis and ate together. Hayden said it felt strange to ride in the front seat of the car! He has been so helpful and loving. He surely had to wait a while for a sibling, but I always knew he would be a great brother.
Last night we ate out with my parents for Father's Day. Here is a pic of B and I:
Apparently someone doesn't know what day it is...oops! I posted this morning and thought it was Thursday. Just a quick update tonight...B had a great day! She is kicking reflux's rear! If things continue to go well for another day we will probably start to transition back to regular feedings!
I got to do something really cool tonight! When Adam got home from work I went to the hospital to visit with Amy (Ava Grace's mom...Ava Grace was born on Monday with T18 and spina biffida)! It was great to hug her neck and visit. It was our first time to meet face to face, but we share so much it seems like we have known each other for a long time.
Sorry no pics tonight...I have to rush off to sterilize syringes.
Since B is doing continuous feedings she has her pump going all but 4 hours a day. In that time I am hand pushing the rice cereal. We stayed home all day yesterday while she had her milk. We snuggled and read books all day. Hooray for a better day with the reflux! She went from spitting up a lot to only one time!
A pic of B all snuggled up last night...she's up to 6lbs-.5oz! Sorry the pic is dark.
Where did Monday go? I totally missed it! We were at Batson most of the day for a doctor's appt, then off to the pharmacy, you get the pic...
Battley has REFLUX...I feel like duh duhn duhn should come after that! Poor girl can't seem to keep her milk down lately. She started some Zantac yesterday which should take 2 weeks to see the full effects of. I also experimented with some rice cereal in her tube and am happy to report that it works!! (LaDona and Lisa, it worked in the 5!!!) Hopefully that will help her too. For a few days we have decided to do continuous feedings with her...meaning she is being fed 24 hours a day so that it is in very small amounts. When we see that she isn't spitting up anymore we will move back to a regular schedule. (For a while this weekend we moved back to every 3 hours and that wasn't working...and we were tired!)
We had a great weekend. Hayden played a soccer tournament out of town and we all tagged along.
Battley is just a happy little chica all the time. Here she is doing her stretches last week:
and so happy to be snuggled in her jammies in the hotel:
Thank you for your prayers for Amy and sweet baby girl Ava Grace. I found out that Amy's sister-in-law is my neighbor's niece! I will post an update from Amy's facebook:
just want to say thank you for everyone's prayers and support. Ava
Grace is in the NICU and showing her self stabling colors. I love that
he is a firey little peanut. She has to lay on her belly at all times
and can not be held right now. It's bittersweet. The dr's will come in
tomorrow to eval her spina bifida and the possibility of a closure
surgery. The cardiologist will do a echo on her brain and a ultrasound
of her brain will take place. Our journey is just starting so please
please please keep my angel and family in your prayers as we put one
foot in front of the next and with God's guidance, we will make the
right decisions and she will continue to fight.
Thank you for all the pancakes you made me and my Momma in the middle of the night when I was in her belly, staying with me the day I was born, feeding me all that yummy milk, always having my towel ready when I get out of the bathtub, making up silly songs, reading to me, holding me when I don't feel good, all the hugs and kisses, and for loving me like you do.
12 weeks ago our little princess entered this world. We have enjoyed every single moment with her.
* loves to snuggle
* looks adorable in purple...well, and pink and green...you get the point
* likes to be outside when it's not too hot
* loves her tubbies (bath time)
* smiles every time she sees her Hayden
* isn't too sure about the toddler Pandora station, but loves when Momma and Daddy sing the songs with the radio
* does NOT like her car seat
* is over Binka-mon
* has grown out of a few outfits...hooray!
* spit up in her car seat twice...you've never seen a happier Momma (when she did that it reminded me that we kept the box for the car seat and stroller so we could return them if we didn't need them)
* has very long eyelashes like her brother
* loves her girlfriends Emma Kate and Betty!
* sleeps all night most nights
* is getting close to 6lbs!
* has thus survived being squeezed by her brother...he says he just wants to squish on her all the time
* may just be the most kissed gal under 13 weeks...ha!
* has a few nicknames: B, Batte, Battle Eye, BC, and Snuggle Muffin
* is truly LOVED!
She's still sleeping. I snapped a quick pic...she's in the kitchen in her bassinet so I can watch her while I do things in here. I've even got work stuff in here now so I don't have to move her around!
**Prayer request: remember a while back I asked for prayers for Amy? Amy's daughter, Ava Grace, is set to make her debut into this world on Monday! Please pray for Ava Grace, Amy, her husband, their family, her 2 brothers, and her team of doctors and nurses. Ava Grace has T18 and Spina Biffida. She has already defied what doctors and statistics have said to make it to her birthday! I know I will be thinking of them all weekend and praying for this tiny little chica!
Great day today! We: * got the air conditioner fixed...broke last night and thankfully it just needed a small part * did a little work today * H got a much needed haircut * stopped for diapers...size: newborn! Battley has grown out of the preemie diapers!! * had a visit with Rosa (B's nurse)
Battley turned 11 weeks old yesterday! She's so snuggly...she's up to a whopping 5lbs-12oz! I snapped a quick pic of her yesterday sporting her new hair clip...it's a bee. Get it? Bee..."B" for Battley!
We have been pretty busy around here. Hayden has been such a HUGE help since Adam went back to the office. B and I take him to cross country twice a week. They run really early so we pack up her breakfast and sit in the car while he runs (he ran 6 miles yesterday then went swimming and played tennis...I wish I had his energy for just one day). We have also done a dentist appt, breakfast with friends, lunch with friends, and errands! I don't think any 13 year old guy's idea of fun is spending the summer with his Momma and sister, but he is being such a good sport!
I apologize for the lack of posting...I suppose I am not ready to tackle the surgery subject so I've been avoiding a post. Please continue to pray for guidance as we make the biggest decision we have ever faced. In the next couple of weeks we will be talking to a few doctors about it...my prayer is for Adam and I to hear what we need so that we have a peace about whichever decision we make. Just so you know though...I've never been so "on the fence" about anything before. We really aren't leaning in either direction! Your prayers mean the world to us!
We had such a great weekend and got to meet some wonderful new friends. Saturday morning we met the Roberts family for coffee. They are a T18 family too! It was especially good for Adam since often the fellas get left out.
Then when we were at the museum on Sat afternoon I got an email from Lisa. Someone gave Lisa the link to our blog where she found our contact info. We met Lisa and her daughter, Betty, for coffee last night. Betty has Trisomy 18 and is 6 and a half years old. They live 15mins from us!!! (I asked Lisa's permission to share this.) Like us, Lisa was given little hope when she took Betty home. What a miracle Miss Betty is! It was so much fun to hang out with them. We laughed...we cried...we made plans to hang out again.
Look at Betty trying to find Battley's arm to hold on to.
We have been busy! Today we met some friends for coffee, went to the museum, and went to the pool! Oh, and I had to change Battley's tube twice today!! It came out at the museum, so if you see pics of her without it...that's why.
My friend did not win the bedroom makeover. Thank you for voting for her though. I really appreciate it!
Now for some pics...
Snuggling her daddy this week...it's all I can do to stop from kissing those lips all day long!
One of the very few times she's not being held...in her bouncy seat
H from museum
H and B
A very kind reader found and sent Battley a newborn size swimsuit
and swim coverup! It fits perfectly! You know I couldn't post about it until we had a
proper picture of this. It is so cute that I would wear the same one if it
came in my size!!