Friday, October 31, 2008

change of plans...

hi sweet catherine-

so your insides were not doing as well as your outsides were leading us to believe...monday they did another echo and found that your pulmonary hypertension was still pretty severe and the right side of your heart was a litle hypertrophied. however, you still appeared to be tolerating the nasal cannula really well, so tuesday they decided to put you only on nasal cannula, without going back and forth to cpap. but tuesday night, after about 14 hours on nasal cannula, you started to drop your sats (you couldn't keep your body oxygenated well) and they put you back on cpap. then throughout the night you were still struggling to breathe and they increased the pressure you were receiving from it. so wednesday they did some more tests-found that your CO2 in your was still high (meaning you couldn't ventilate very well) and that the BNP (brain natriuretic peptide-indicates heart failure) was almost 1800 (normal is around 50=(). so this meant that basically you did a great job of pushing through some of the stuff that was harder for you, but your body was getting to the point that it couldn't do it anymore. so you were working harder to breathe, your CO2 was increasing, your pulmonary hypertension was high again, and the right side of your heart was starting to fail as a result of it. and all of these things work together as a vicious cycle and make each other worse. so they started talking about putting you back on the ventilator to see if that helped get the CO2 off, decrease your work of breathing, and therefore hopefully help the pulmonary hypertension and help your heart. then if the ventilator did help those things, we would probably move to getting you a trach in the next week or two for long-term ventilation. remember how mommy was so scared of a trach? the nurses and respiratory therapists sat down with me throughout that day and talked all about other sweet children who have had trachs and have done so well and thrived and run around playing like it's nothing=) point being: i feel much better about you having a trach and i'm kind of to the point where i just want to do it and get on with you getting used to it and us learning how to take care of you with it. you would get to go home with it (the doctor said it would be "from weeks to months" that you would need it) and breastfeed with it and do all kinds of normal baby things. so i'm ready=) i hope you are too sweet . they did end up intubating you again yesterday and so far the ventilator and nitric oxide is helping you a lot. the gases are much better, you are obviously not working so hard to breathe, the echo of your heart showed decreased pressures meaning the pulmonary hypertension is getting a little better, etc...so it is helping. and that means we are likely to get you a trach pretty soon sweet . we can do it. yesterday you were a little grumpy about the tube being down your throat and the nurses and doctors were trying very hard to find a good balance of sedation medicine for you. i think they've found it because today you've been a very happy -taking naps here and there and while you're awake you've just been looking at me and even smiling a little around that little tube=) you've gotten a little puffy again-you got a transfusion yesterday and a lot of iv fluids so that makes sense. you are still the cutest baby i've ever seen=) your oxygen saturation monitor is on your hand and you keep holding that hand in front of your face because it has a little red light on it that you like to look at. it's very cute=) it's great for mommy to see you still exploring your little world even when you have a machine breathing for you. it's crazy too. yesterday you and i were both sitting there crying while we looked at each other-you because you were grumpy about the tube i'm sure, and me because it's so sad to have seen you breastfeeding and doing all sorts of normal baby things last week and then now you're back on a ventilator. and i seeing you upset. but we were being buddies, you and me. keeping each other company and telling each other it would be ok. that's what i imagined you were telling me, at least=)

so this obviously pushes everything back a little. you will clearly not be home in a few weeks. you will also not be transferred to chippenham next week like we originally thought. it will take maybe another month to get you there-they just want to get a good handle on what's going on with you and what the best plan is to help you. and mommy has to go back to work. i will miss you so much sweet . i'm starting to cry a little just thinking about it as i type. but we'll make it, won't we=) i love you so much sweet baby-you are my favorite little person to play with and i'll go back in the nicu now to rub your sweet head=)

mommy

ps-daddy has been missing you so much this week-he's been sick and has made himself stay away from the nicu. he'll be back soon to sing to you some more and call you buddy=)

27 comments:

Hot Tub Lizzy said...

Still praying Miss Catherine... we just love you!!!

Misty Davis said...

I love it when he calls her buddy...

I love you three so much! Sweet Catherine is always in my prayers!

Weylin and Tori said...

I am a mother to a CDH babe who is trached and vented. I know that coming to this decision was not an easy one! Please, please, if you need someone to talk to about this feel free to contact me! It is never easy, but to see the kiddos progress after the trach is amazing!

Tori Douglas
Mom to Ethan, LCDH 1-12-07
toridouglas@hotmail.com

mtranier2008 said...

praying for you guys always :-)

ilse sears said...

Another set back. At this moment I know it must be so hard. I know it is so hard on you, Donny, Catherine, grandparents, aunts, cousins, friends, neighbors and the whole world who has been pulling for Catherine. We will continue to pray for all of you and our little darling Catherine. We are looking forward to finding out about her tracheotomy. I had a nephew who had to have one and he did fine. It is almost as a heroic mark on his neck. It will be a heroic mark on Catherine. We love you.

drmctrsltsl said...

Hello Sweet Baby-- setbacks are never fun but as long as you move forward than all is well. Whatever helps you to come home. I love you and hope to here you are doing better soon. If you need someone to sit with Catherine so she is not alone when you go back to work I'm sure a whole lot of as will help. It's only a short drive away. I'd be glad to help.kmalmeda@hotmail.com
Again, happy Halloween.

Dawn Johnson said...

Catherine, you are such a miracle and have made so many people so proud of you with all your hard work. I will probably never meet you but I love you and pray for you daily. Take your time, little one and grow strong.

Hang in there Mom and Dad, we are praying for you too. You are braver then braver and loved beyond loved for all that you do for Catherine.

Dotty said...

oh my heart sank when i read this, im so sorry for the setback. im sorry for the worry and the uneasiness of your hearts! ill pray for Catherine, she is such a strong fighter. im sure your docs are wonderful but i feel i need to pass on some info. we were told zachs pulmonary hypertension wasnt anythin to worry about , we left the nicu and 5 days later rushed back to the picu, he was in resp. faliure. we were there a month again on the vent before they tried the nitric oxide and when it worked they decided to give him viagra...a liquid form, its actually called rovatio or something, anyway it has been a God send for zach, it and the lasiks and diruil have gottan the pulmonary hypertension under control. ill be praying for you all!! hang in there, keep your faith strong.
God Bless
momma to zachary
lcdh 10-26-07
carepage zacharydavis

Erin said...

Oh pooey. I am sorry that this week has not been the best. What a roller coaster ride, but thank God you have friends and most importantly God to walk through this with you.

We are praying and we won't and haven't stopped!

Sharon - Mom Generations said...

Praying still, beautiful little darling... praying with all my might...

Abby & Pete said...

well, this certainly is an adventure. I'll be praying so much these next few weeks. I was picturing her today in a pretty frilly Christmas dress. I added that to my prayer list.

Fer said...

My prayers are with you dear Catherine!
Fer
CHERUBS Mexican Rep.

Deb said...

Katie,
I'm so sorry to hear about this "set back"! As hard as it is to endure, this may not be a set back at all, but part of God's plan all along. I know you must feel so devastated, and I hurt for you too. Hopefully there is some small peace to be had in knowing that the "stress" of a transfer back to Richmond isn't there right now. She is in good, loving hands at UVa and you know that they will take care of her. God has brought you all this far, and isn't about to stop loving and caring for you now! Let me know if I can do anything to help you all. I've got my little "Catherine" stone in my pocket again today! Hope Donnie is feeling better too.

Kristy said...

I love you! Thinking about you as always!

TKD said...

We are keeping you in our prayers. The Lord is in control and is working His plan!

flo&crystal@ric.va.usa said...

oh, Katie and Donnie, I do believe that God lets Catherine stay there a little bit longer is for her best, even it is hard for you to be a litte far away from her, but hang on there, God be with you two and also with Catherine, protect her and take care of her as always.

Aaron, Katie, Kylie & Ava said...

We are continuing to pray for your family. We will say extra prayers for you all during this setback. God bless you!

ShannaRenee said...

2 steps forward and 1 step back, huh? I know this must be a huge disappointment, but it sounds like you're coming to peace with the idea of a trach and are figuring things out, so that's good. Catherine is a typical woman- complicated and tough to figure out...ha ha! But each day the doctors are getting closer! One day though, when she's older and puzzling you guys about one thing or another (probably the adolescent years), you'll look back and laugh, pointing to this time in her life.....like that personality trait has always been with her. We have a niece who had a rough beginning when she was born and she had to fight for her life (she's now 8) and whenever she gets stubborn or passionate about something, we joke how she's had that determination since birth and it's what got her through things. But just keep praying your "bold" prayers and know that we all love you and are praying for you. And we hope Daddy gets better soon so he can see his little girl- I'm sure she misses him and his singing! Lots of love and strength!! You guys are amazing :)

Missives From Suburbia said...

Praying for your entire family always.

Terri Taulbee said...

Katie,
I was finally able to read all about little Catherine. What an amazing journey you are on! I will continue to keep you, Donnie, and baby Catherine in my thoughts and prayers...I can't wait to see this little miracle in person!

AtlantaMama said...

still praying Catherine

Nysewanders said...

I'm sorry Katie. She has come so far and when there is a set back my initial reaction is 'dang it' but I'm quickly reminded that even where she is now is miraculous. God is good to us and He is being good to sweet Catherine too:)

Katie Bug said...

hi. I'm just someone who found your blog and I have been following it for months. I've been thinking of you and praying for you. I noticed you hadn't posted in a while, and I just wanted to make sure everything was ok with you guys.

hugs,
Susan

Sis. Gail from Camp Creek said...

Katie, I haven't heard from you and Baby Catherine lately, but I wanted to remind you that we are all still praying for you all. I received this from email this morning, and thought you would like to see it: A baby asked God, 'They tell me you are sending me to earth tomorrow, but how am I going to live there being so small and helpless?' God said, 'Your
angel will be waiting for you and will take care of you.'The child further inquired, 'But tell me, here in heaven I don't have to do anything but sing and smile to be happy.' God said, 'your angel will sing for you and will smile for you. And you will feel your angel's love and be very happy.' Again, the child asked, 'And how am I going to be able to understand when people talk to me if I don't know the language?' God said,'Your angel will tell you
the most beautiful and sweet words you will ever hear, and with much
patience and care, your angel will teach you how to speak.''And what am I going to do when I want to talk to you?' God said, 'Your angel will place your hands
together and will teach you how to pray.''Who will protect me?' God said,'Your angel will defend you even if it means risking its life.''But I will always be sad because I will not see you anymore.' God said, 'Your angel will always talk to you about Me and will teach how you will come back to Me, even though I will always be next to you.'At that moment there was much peace in Heaven, but voices from Earth could be heard and the child
hurriedly asked, 'God, if I am to leave now, please tell me my angel's name.'God said, 'you will simply call her, 'Mama.'
You and Donnie are amazing parents to your sweet baby Catherine and you will be able to teach her all about God as she gets older, but she is now teaching us all about God through her amazing journey to getting better. I love you all! May God continue to shine down His blessings on all of you. Your cousin, Gail

Tammie said...

I'm also someone that just follows your blog and wanted to make sure everything was okay. Although I am a stranger to you, I found a common friend between us. I sent out a prayer request to my friends and one wrote back saying she went to high school with you. That was pretty neat. She said you and your husband are some of the sweetest people she has ever met. I told her that I could tell that by your loving posts about Catherine. I'll continue to keep you, baby Catherine, and your family in my prayers.

mummy to angel SKYLA said...

Hi Katie, im a mummy to CDH Angel SKYLA, just wondering how your beautiful little girl is going. We havent heard from you in a while and we are all getting a bit worried. I hope everything is fine with sweet Catherine. Hoping to hear an update very soon.

Kristy, mummy to angel SKYLA
skylacdhbaby.blogspot.com

jkforreal said...

Katie and Donnie, your love for Catherine are amazing and thank you for sharing so much. I pray y'all, for health and strength and comfort - your blog empowers many to see how those prayers are answered, and it keeps up hope. There are plenty of folks near and far willing to help anyhow they can, I hope you will be lead to them and they to you.