Monday, November 10, 2008

trach

hi sweet baby=)

it's 2am and i am missing you. you will be getting your trach in about 10 hours or so. i'm ready-i hope you are too. i'm even a little excited about it. i think i'm just ready to get on with things-to get you used to having a trach, and get us good at taking care of you with it. i think you'll do great with it sweet girl. being on the ventilator for the last week and a half has been really helpful for you. your CO2 has gotten so much lower, and your BNP (the measure for heart failure and therefore pulmonary hypertension) went from almost 1800 to 61!!! that's great my girl! that makes mommy feel a lot better. as scary as it is for you to have a trach, it makes me relax so much to think that it will decrease the work you're having to do and therefore make every little part of your body happier and work better together. and we can be patient=) we can definitely handle a beautiful little girl with a funny little contraption to help her lungs work a little better for a little while=) the doctors say it will be temporary, but they're not sure quite how long you'll need it. maybe a few weeks (not likely), maybe a few months, or maybe a few years. he says "just put it this way-she won't be going to kindergarten with it"...so that's good=) there's a sweet respiratory therapist at uva who has had a trach herself and she's spent a good amount of time talking to (and calming) mommy while we talk about you getting a trach. she says it might be hard when people stare at you because it's different and they won't know what it is....you know how people do. it's pretty natural for people to react that way-i can't exactly blame them-and right now i feel like that won't bother me too bad. part of me really hopes you don't have it long enough to where you realize people look at you differently-so you won't have your feelings hurt. but part of me doesn't mind that at all. it's kinda neat to have the opportunity to teach you that it's ok-that being different isn't a bad thing at all-that we have grace for people who might not be as courteous or gentle as we might like them to be. we can't blame them for being human, you know? because the truth is that we are no different. mommy and daddy naturally have a hard time not watching people who might look different than us, and you will be the same sweet girl. you will find it hard to not look at those people too. i pray that you will love people who look different, because they are just as they are meant to be. and you are just as you are meant to be-just how God made you-and we can't complain one bit about that...it's just not quite what we imagined. no problem=) and this respiratory therapist friend says i might be a little idealistic about it right now. that might be very true. but we'll take it as it comes, won't we? we love you so much sweet girl. you are incredibly beautiful. we can't get over it. i love watching the nurses come by your bed and talk about how pretty you are. and they brag on how you're perfect. i, of course, think you're perfect all around. but what they are talking about is how you're perfectly appropriate as a baby. my favorite thing you're doing lately is reaching out to touch your toys that i'll hold out in front of you. and i'll read books to you and you look so intently at the pages. you must be brilliant=) you and i have had a great couple of days together. you sit in my lap all day and sleep and wake up, sleep and wake up. and when you're awake you've been wide awake and playing with me. swatting at rattles and little caterpillar dolls named carrie and triangle shaped thingies named moe and elephant faces named trunks. your nurse helped us name them. these things all make noise and you like to watch them and reach out for them. i get goofy and a little teary-eyed when you do these things=) sometimes i forget that you're a normal baby, just with silly lungs and blood vessels that aren't quite working right yet. so it makes my day when you show me how normal you really are=) i love you baby girl. i can't wait to see you in a few hours. i will give you a pep talk=) i will say something like, "this is a big day, and you can do it." you can=)

mommy

22 comments:

Teri from CMC NICU said...

Hi Katie! It was so good to hear your voice tonight when we talked. You sound so strong. How inspiring. I know everything will go well for miss Catherine today. Today will be so big for all of you. Trachs heal fast which means she will go home even faster !!??!! (hopefully =>) You truly are inspiring to me! Catherine is so lucky to have picked you as her mommy (I'm sure her daddy is just as great too =>) PLEASE let me know if i can do anything for you! My number is in the unit or you can reach me at jwtw418@aol.com. Love and prayers to you, Donnie, and of course the star of the show-- sweet little miss Catherine!!!
Love, Teri
p.s. I'm so glad you posted tonight! I was so worried and anxious to know how everyone was doing!!!

shelly70x7 said...

Auntie is cheering you on sweet girl! Your mommy and I have a funny saying, from the movie Nutty Professor, and I'll say this with all belief and love for you today..."YES YOU CAN! YES-YOU-CAN!" I love you so much and I know the Lord is singing over you baby girl =)

Megan said...

Hopefully this will mean that your sweet little baby can come home soon! Praying for your precious girl today.

The Roaming Southerner said...

Praying and cheering hard for Catherine today!?!

Tammie said...

Great news that Catherine will be able to go home with you soon. She certainly is such a sweet miracle baby, isn't she? And you are the epitome of a wonderful mom. Good luck to today, we'll all be praying and sending happy vibes your way!

Emilie Smith said...

Praying for y'all today! I love picturing her just being a sweet, fun, beautiful baby girl sitting in your lap! Love you!

Deb said...

Hi Katie,
Sending you love and prayers today!

TKD said...

What a big step. Catherine will probably be much more comfortable at home. I'm very happy for y'all! We will continue to pray.

Fer said...

Many prayers for you and Catherine.
Fer
CHERUBS Mexican rep.

Erin said...

Oh Katie, you make my heart so happy. I admire your strength, and your consistent faith in God. I am praying for baby Catherine as she has her surgery today. Keep us posted.

drmctrsltsl said...

Katie, so glad you posted. I was starting to get worried.

Catherine, today is another big day, and yes, I know you can do it. Hopefully the He will let you come home with mommy and daddy for thanksgiving? What a gift that would be!

You may be "different" for a little while my love, but that is what makes you you. I know mommy and daddy will be able to take such good care of you at home.

I know what it's like to be "different" love with my disability but that is what HE wanted. Think of it this way: if anyone ever stares at you b/c of your trach just think of that person as one of GOD's angels wishing they were more like you! SPECIAL :) I love you. thanks for the update. I'm praying as always.

Brooke Hammel said...

Yay little Catherine... you are moving along!! Praise God! I am praying for you. You are such a brave girl. You will be just fine! :)

hannah and tony said...

I've been praying for you all day today sweet girl and will keep doing so. I feel so much peace and encouragement that this trach is going to help you out so very much. I love you darling girl!

Hannah

ShannaRenee said...

Catherine- whether you had a trach or not, people are going to stare at you- you're just too cute and beautiful for them not to! I love the stories of your mommy playing with you and your toys and you having that intense little look on your face. I agree with her- you must be brilliant! And you ARE so special and set apart by God! I can't even begin to imagine how many people's lives you've touched and you're only a few months old!! Stay strong today and I can't wait to hear the good news of the surgery. You are a miracle baby and you'll get through this like all the other obstacles in your life. Lots of love to you and to your Mommy and Daddy!

Sharon - Mom Generations said...

Love and prayers are pouring out from all over the universe and the heavens for beautiful little Catherine... for her great strength and for Mommy and Daddy and her doctors and nurses and family and friends and friends from far away who check in all the time...

Belief and faith and love create all the successes in the world... and we all celebrate Catherine in all of her beauty and all of her successful little steps each and every day...

ilse sears said...

I am so glad to read news about you all. You are all so brave and the day will come when you will smile and think back at these obstacles with relief and happiness. Now, it is all going to be so much better. Jack and all of my family here and in Costa Rica are praying for you all. Can hardly wait to meet little Catherine. Love, your Aunt Spanish

Kathy Davis said...

Hi Katie, Donnie & Little Angel Catherine:o) Today is a big day for you all, but I see it as a stepping stone for improvement, growth, stability, and getting you closer to getting home together where you can began your true family life. That will be a blessing and a beautiful day.

Yes, the trach is a temporary support mechanism and only good can come out of it. No worries about what others think, because we all know how special little Catherine is, and how brave and understanding her Mommy and Daddy are. No fear, they will make you, Catherine, feel comfortable with whatever the situation is and yes they will take such good care of you. You are their gift from God. Their miracle child. You have become a beautiful story for sharing with friends and extended family members, because you are so brave and the faith of your Mommy and Daddy are truly remarkable.

You are all blessed beyond the imagination and beyond what we family members ever thought possible from what the doctors were predicting. That MIRACLE happened and we are all blessed and some of our faith has been strengthened by the miracle of YOU and the faith of your parents.

Surely, God has been good to us all, through you and your parents, showing us what life is really all about. Will pray that your pain from the trach is kept eased and you have a gentle recovery from the procedure tht is going to help you come home and help you to grow and have a glorious life ahead. I pray, as does " drmctrslts" in her comment earlier that you come to realize that even with a disability, be it life-long or be it for a short time only, you are loved even more by God and those around you because of it. It does make you who you are and you are someone unique, a blessing from the Heavens.

May the Angels watch over you, Mommy and Daddy in the coming days and make this adjustment a time of celebration for a future to be filled with growth and health stability.

With our Love ~ Aunt Kathy, Jincey and Mitchell

Kristy said...

Praying that everything goes well. Love you!

Abby & Pete said...

catherine, looking different is not so bad. I have this big birth mark on my head and people still ask me about it, and say weird things to me even at 26 years old. but your mama is right, it helps me love different looking people more and give grace to the dodo's that say silly things. you're doing great...we are praying so much for you and think of you all the time. your picture is on our fridge in a pineapple magnet frame!

Lisa said...

I hope the surgery went well. Prayers for baby catherine!

Kaden and Angel Ava's mommy said...

Hi, this is the first time I have visited your blog. I found it from Owain's blog. I just wanted to let you know that I have read through some of your beautiful letters to Catherine. I was immediately drawn to your family, as we have SO much in common. I have a four year old son who was born with CDH and spent time on ECMO (as did my daughter for a congenital heart defect, she however lost her battle). He stayed in the NICU for 11 months and ended up getting a trach for long term ventilation. I was so nervous at first, I don't know if it was because of the trach itself or because of his diagnoises and the unknown, probably a combination of both. He was sent home with the doctors telling us that he probably wouldn't live long after his first birthday. Like I said, he is four now and an amazing miracle. He does still have his trach and vent, although we are working on coming off of the vent. He can walk (which we were told that would not happen) and he tries to talk. He is a typical 4 year old boy who goes to school, to the store, any where we go he goes. If you would like to visit our blog please do so. www.kadenboeckman.blogspot.com

If you don't mind, I would like to add you to my blog list as I would like to continue to read Catherine's story.

Your family will be in my thoughts and prayers. (By the way, Catherine is a beautiful little girl. Her big bright eyes remind me a lot of my Kaden's when he was a baby.)

Amy

Nysewanders said...

We're praying right now! God grace is resting on each of you.