Thursday, December 18, 2008

home sweet home=)

hi baby=)

you have been home now for one week. we are loving it, and it seems like you love it too! you are very smiley, especially in the morning. daddy and i are working out a routine, slowly but surely. you sleep through the night, and we are so thankful! it works out well for all 3 of us because neither of your parents function very well on little sleep! so a couple times through the night i'll hear your breathing change or your ventilator beeping and i'll get up to check on you. usually you just need to be suctioned or have your diaper changed. sometimes your tummy seems to be bothering you so i rub it and pat your sweet head and slowly you'll calm down into a deep sleep again. then around 6 or 7 you wake up and you hang out with daddy so i can sleep for another hour or two (daddy is quite a morning person, and mommy not so much...so our routine is working quite well so far). your gigi has been here helping out-cleaning and doing laundry and running errands for us and holding you every chance she gets. your grandaddy comes in tonight and you will love him i think. he's very tall with pretty silvery white hair that you'll love to look at. he also has a great mustache that i used to push up his nose when i was a little girl. weird, i know-but it was our game. i wonder if you'll do that too=) he doesn't like it, but i bet he'll let you do it if you smile sweetly at him and give him big hugs;). then sunday it'll just be the three of us! i think we can do it. mommy tends to get pretty anxious when i can't picture how things are gonna work out, but daddy calms me down a lot. we're lucky to have a laid back daddy, don't you think? (by the way, he just walked up to you in your swing and said "hey girlfriend!"which i thought was kinda funny. i can't wait till you can laugh really good at him. he's a goof.) he's been putting you in your bumbo chair and watching charlotte's web with you tonight. you two are funny and he's working really hard to get you where you should be developmentally. you're actually doing much better than people expect! you're very alert and looking around at everything and following objects and people's faces. you reach out for toys with your hands and always have to be holding things-and you have a great grip=) you reach up with your right hand a lot and rub your head. it's pretty cute sweet girl=) your hands are my favorite because they're so soft and if i put my hand down near yours you find a finger to wrap yours around. you kick your feet a lot-especially when you're in a good mood, and especially when you're in the bathtub. you're so funny about your bath-you always seem a little worried at first, but then you relax and love it. daddy always holds your towel across his chest and i hand you off to him. then we take you to do trach care and that's never your favorite, but you're getting better with it. not minding quite so much. we changed your trach at home by ourselves for the first time yesterday. you absolutely hated it, of course, but it actually went well. it was the fastest daddy and i had ever done it. everybody keeps saying that eventually you'll "help us" by moving your head to either side when we need you to. i can't wait for then, sweet girl, because that'll mean you don't mind it as much.

taking you to the doctor is quite the undertaking. you've had two doctor's appointments so far, and another one tomorrow. you get kinda fussy in the doctor's offices and i think that's funny because you didn't mind one bit when everyone on earth messed with you during your 4 months in the hospital. i guess maybe that became a familiar place to you so those things weren't as scary. but you have one tomorrow, and one two weeks later, and one a week later than that, and then another one the next month, etc, etc...my point: i hope you get used to doctor's visits soon or those will be sad days! tomorrow you're going to see your pediatrician for your 4 month check-up and immunizations. while the check-up will be far from typical, the immunizations part of it is in a way is a happy part for mommy because it's what normal healthy babies do. i feel kinda funny about that sometimes...let me see if i can explain it right: now that we're home it's becoming routine for us, and therefore it's becoming our "normal". of course there are times when mommy's exhausted and i wonder if i can really do this-feeling pretty hopeless and unable to keep up this pace for an unknown amount of time. i feel so sad for you sometimes and it rips our hearts apart to watch you unhappy with all the "stuff" you need right now. however...we are always thrilled beyond imagination that you are home with us, and even here at all. so yes-it becomes our normal that you have all your equipment to lug around, and i start feeling happy and relaxed and maybe a little too much. but then we go to these doctor's appointments and are reminded about how sick you are and how far you still have to go. you're doing so great though, my girl. i just wanted you to know a little how the waxing and waning of emotions are ok and normal=)

today we went to the cardiologist. we like her a lot=) she said that although you're on an extremely high dose of sildenafil (which helps dilate the blood vessels to your lungs, thus improving your pulmonary hypertension), your pulmonary pressures are still elevated. that's not great, but the pressures are actually lower than they were when you left the hospital. so that's good. the right side of your heart is enlarged because it's been working against such high pressures in your lungs for so long, but it's still functioning correctly so all that is encouraging. we go back to see her in january, along with pulmonologists and together they'll make decisions about your ventilator and trach. i can't help but hope you can come off them both next summer, but that might be too optimistic. the cardiologist said it wasn't outrageous to imagine that-that it's possible-but that all would have to go very well. we'll keep hoping, right? but we'll be quite alright however long you need these things. you might get a special little valve on your trach soon that will help you make sounds and learn to talk-that'll be fun sweet girl=)

so you are the most precious thing. it's amazing having you at home with us. just being able to snuggle with you on the couch or in the new chair daddy got me for christmas (an early gift, in order to cozy up our home for you=)). you love the christmas tree right now. you've always been a big fan of lights and we got some fun pictures of you discovering it. we love you sweet girl. you are our hearts' delight and we can't get enough of you. enjoy your pictures=)

mommy

watching tv with daddy in your bumbo chair

trying to get christmas card pictures

all dressed up

driving home from the hospital

you discovering the christmas tree

daddy teaching you about the bird feeder


fancy pants

34 comments:

Scott and Katie said...

Katie,
She is adorable. We check your blog everyday for updates. I'm sure you are so releived to be home:) Keeping y'all in our prayers

Erin said...

I'm so proud of all three of you! God sure is being glorified in your lives right now. I really miss y'all and hope your Christmas is wonderful!
~Erin J

Kaden and Angel Ava's mommy said...

She looks absolutely amazing. I believe that being at home helps them heal. So can you get nursing help at night? Just curious because they wouldn't send us home without nursing for Kaden. Granted, we still did all the trach care and such, but it did help us rest knowing that someone was up while we were sleeping. We had a baby monitor on though so we could still get up when he did. You should check into that. Even for during the day so once you get comfortable with that nurse you are able to leave the house when you need to.

I am so happy that she is home. She is a very beautiful little girl. I continue to keep your family in my prayers. Reading your post reminds me so much of what we went through with Kaden. You guys are doing an amazing job. If you ever need anything or have questions please contact me.

Amy

Gina said...

Praise God from whom all blessings flow!!!!! I have been following your blog for a while now and am so happy to see that Catherine is at HOME!!! Yay!! What a wonderful Christmas present. God Bless you all!

DrmCtrsLtSl said...

Oh Katie, I have been waiting for an update for so long just thinking about the wonderful time you and Donnie must be having at home with Sweet Catherine. The pictures are baeutiful.

The Lord has Catherine in His hands and will keep her safe. No matter how sick she is or how much equipment she may need or for however long-- it is His plan--easy or not, whether you believe it now or not, have Faith and He WILL see you though.

Keep working with Catherine on all her developements and she will succeed.

Home is the best place to heal. Happy 4 month birthday my love. You are truly loved by many. Merry Christmas--Your 1st!!! :)-- and Happy New Year! The best to you all in 2009:) Peace be with you.

AtlantaMama said...

Catherine you are BEAUTIFUL and I know you LOVE your home and your Christmas Tree!! Katie and Donnie -- yall are amazing!!!! You just keep on keepin' on and I am in awe.
God is so good to give you such a GREAT early Christmas gift of having your family together and HOME just in time for the holidays.
We ran into Nikki at church she told us about visiting over Thanksgiving and how yall were doing.
We love you!!

Happy Month Birthday - Dec. 19th Sweet Catherine!!!

Hot Tub Lizzy said...

Oh my GOODNESS!! Isn't she just the cutest thing!!!

I was hoping you would update soon, I've been praying about coming home and that transition and hoping that it was going smoothly for all of you.

What a beautiful gift to get to spend Christmas AT HOME with your little girl. 6 months ago would you have thought that?

Beautiful... just beautiful.

Lisa said...

I'm crying b/c I'm so happy for you and your family. What a precious little fighter of girl you have... she is beautiful! Merry Christmas!

monica said...

You have no idea who I am, but I'm Ruthie, Aimee, Mark & Luke Tanner's "Aunt Monica". I have been following your story all along. I am touched and pray for your sweet family all the time. I have also been anxiously awaiting an update, asking for the Lord to give you two peace & strength in having your little angel home. She's beautiful, I love the picture of her checking out the tree, so sweet. The one sitting in her chair is also fantastic, she's come so far! I continue to look forward to your updates!

:) Monica

Fer said...

Katie, I loved the pictures, I can tell Catherine is happy to be home just by looking at them. She's one beautiful baby and you are one beautiful mama.
Keeping the prayers for your family.
Love,
Fer

Katie said...

I'm so glad to hear Katherine's doing well! It's amazing to read your blog... Your Christmas pictures are precious and adorable! Y'all look great - all of you! May God continue to bless y'all and continue healing Katherine. Merry Christmas!

Karen said...

Katie,

So glad to see she is adjusting well to being home. I love the "all dressed up" pic, WOW!!!! Thinking of you often, I hope the ornament arrived okay. :-)

Erin said...

Katie,
It is great to hear and see that Catherine is making progress. It is also a great reminder of what Christmas is all about. Christmas is about Christ and all that He has done for us, and continues to do. I pray that you will find peace in HIS hands this Christmas. Give that precious miracle a hug and kiss for me! I love you.

Kristy said...

Oh my sweet Margaret Kay! I cannot wait to meet this little miracle. I pray that everyday she continues to get stronger and stronger. Love you all!

Oh, got the Christmas card today and it brought tears to my eyes--what wonderful pictures!!!

shculbreth said...

Katie,
I've been following the miracle of Catherine since you were pregnant. There has not been a day that you and your little family have not been in my prayers. I rejoiced today to see the pictures! She is so precious and your happiness just comes off the page of your blog.
Prayers continue as Catherine progresses! Merry Christmas!
Susan Culbreth
(Your parents' friend and Sara & Erin Bonner's mom)

Debbie said...

Catherine, wonderful to hear you are doing so well. You are all so blessed to have one another. It's been a while since your mommy posted but I was sure she has been busy taking care of you and loving you. You are adorable "my sweet"...I love it when your mommy calls you that....so precious.
Debbie in Decatur

Terry Lynne said...

I am so happy for you guys. I look for updates daily on how things are going. The picture of you holding Catherine up to the tree and where her daddy is teaching her all about the bird feeder.. well those are just too heart warming. = )

A Southern Wedding Belle said...

Oh my!! What an amazing miracle! You know that I am crying looking at those beautiful pictures of you all. Praise God!!!!! That is all that I know to say - except that Catherine is absolutely beautiful and looks so happy to be at home. I love you all and miss you - Merry Christmas. Mama Debbie

Brooke Hammel said...

Precious Catherine, what a delight you are to your Mommy and Daddy.. one day you will know just how much! Katie & Donnie - hang in there! The Lord gently carries those who have young... My heart goes out to you both and to your little munchkin and I pray for you when I think of you. I hope so deeply for you, and know that God is all the more FOR you! Sending you HIS sweet love... may it surround you and bring you peace, and Lord we speak "HEALING!" to precious Catherine! Lord let our hopes become reality! Thank you for your promises and that we can rest in you God, you are so good to us.

Abby & Pete said...

catherine...seeing you home is pure joy! I love you in that bumbo seat. every now and then I will be playing with eden, and suddenly remember...catherine is home! we are all so thrilled and pray for you every day.

Allison said...

Amazing family! I hope you enjoy your first Christmas together. :-) God bless! I'm so glad she is home!!!!

Katie-Katie-Married-Lady said...

Hey Guys! What a blessing to finally have her home! Woohoo! She is more beautiful with every post. We can't wait to meet her! We'll miss y'all this Christmas, but our thoughts and prayers are with you!!

ilse sears said...

So much love...What a grandious moment to finally have little Catherine at home. She will thrive...yes! She will get well now that she is at home where she belongs. You are all so beautiful. What a celebration of joy, life and hope for all to see and feel. We love you. The Christmas card is amazing. I cannot stop looking at it and talking about it. Lots of love, Aunt Spanish.

Deb said...

Katie,
I'm so Happy for you all!! Little Miss Catherine looks right at home. I love the innocence in her little face as she's looking at the Christmas tree lights. You've been through so much to get to this
point but I think you'll agree she's worth it! She's an amazing little miracle who will touch many! May you all be blessed beyond measure this holiday season and may 2009 bring you more health and happiness than you can even imagine! I miss seeing you, but keep you all close in my heart and prayers

Sharon - Mom Generations said...

The beauty of Catherine... and you, Mommy, is breath-taking (and Daddy, too, of course!). Dancing eyes and exquisite smiles... lights from heaven. Surely. You have created a little miracle and she has changed the world. She has changed so many of us... with her great determination and your great love. As I read your post over again, I see God's love so clearly and I realize truly the beauty and miracle of this season. I am so very happy to know you... and so happy and honored to share your journey. With much, much love...
Sharon

Nikki said...

Wooo hoo for being home! I'm so excited for you, baby girl!

ALL IN THE FAMILY said...

Yea Katie!! Much love to you guys and, of course, still plenty of prayers. Merry!Merry!

janet cosby said...

My little Katie. I posted you a comment several months ago and then realized it never took. Keely can tell you I am blog challenged! Catherine is the most beautiful baby ever :) I am so happy for you guys that you have her home now! We think about you guys and keep you in our prayers always. Hope you had a merry merry christmas!!! Love you guys,
Janet

Aaron, Katie, Kylie & Ava said...

We hope everything is going as smoothly as possible for you three. Your pictues just warm our hearts and we hope you had a wonderful Christmas with your baby girl. Our prayers are still with you.

Missives From Suburbia said...

I haven't had a chance to check in with you guys in a couple weeks, because I had a baby myself. But I'm so happy to peek in and see that Catherine is home! I can't even tell you how many tears I've cried over your blog and how I've hoped for this for all three of you. Congratulations!

Hot Tub Lizzy said...

Just checking on you to see how things are going!! Still praying!!

MaryEllen said...

Katie and Donnie~ Just wanted to say Happy New Year and that my prayers are with you and baby Catherine~ she's so adorable! Enjoy.. Kids are an amazing blessing! MaryEllen Dunn~ Elaine's aunt.

chefmomrd said...

Hi -
I was actually just surfing the web for babies with trachs and came across your beautiful love story. Praise God for your little gift. I am going through a very similar experience and would love to be able to keep up with your story if thats ok. Our baby is 14 weeks old, and we have a huge learning curve ahead. My baby is Serene and her story is at caringbridge.org/visit/serene although I don't post very often. Stop by if you like. And may God continue to bless you.
Renee

Posh Mama said...

Just stopped by to check in, hope all is well. You are all continually in our prayers.