Gwyneth is doing well today. I was able to hold her again yesterday for over an hour, this time with my shirt on and her wrapped in a blanket. She has some VDay balloons and cards in and around her bed from her parents and grandparents and a few others. Below is a pic of the card I found for her from Tricia and I...click on the image to read what's on the front..."perfect" her mother told me...
Here's the stuffed, singing, moving dragon that Tricia begged me for...Q&A:
> Tricia is still not allowed to drink anything.
> Some of you have mentioned a chalk/milk swallow test. That is called a Barium Swallow and is different than the swallow test Tricia did the other day. She has had to do the barium a few times in the past, and it's probably the thing she has hated the most out of everything she's ever had to do.
> Tricia's normal day looks like:
Wake up sometime between 5 and 8am (depending on the nurse and her willingness to let her sleep) to receive meds, "breakfast", check vitals, etc.
Sleep some more and wake up again for the doctor's rounds, usually around 9am.
Sleep some more until around 10/11am.
Receive some more meds.
Do some PT around 12/1pm.
"Eat" "lunch".
Do some more PT...maybe ride the bike.
Do a trach collar trial for a few hours.
Check email.
Receive some more meds.
Do some more PT...maybe take a walk around the hall.
"Eat" "dinner" around 6pm.
Watch some tv.
Receive some more meds.
"Eat".
Fall asleep around 10/11pm.
> Meka is not allowed in to see Tricia because she's probably got lots of bugs and stuffs all over her.
> "PS. I love you" is something I've been telling Tricia since we first started dating...I often call her "PattySue"...we haven't seen the movie, but have thought of a lawsuit...
> I get most of my cool fonts on the videos/etc. from DaFont.com and UrbanFonts.com.
> When I said that comments about my hair were cruel, I was joking...
I've had several new people ask me CF and Transplant related questions that I've already answered. If you do a little search on this blog under "labels" over their on the right of your screen you'll probably find the answer to your questions.
Nate
The barium stuff is so icky! I'm glad to hear she is doing well after her surgery yesterday! Praying for a constant recovery!
ReplyDeleteYes, my daughter has never been amused with the barium either.
ReplyDeleteI can't say it enough - what a wonderful job you're doing - continue to take great care of your ladies and yourself.
Thanks for all the sharing,
Prayers for all of you,
Karen
Yeah, wait til Gwyneth starts begging you for stuff..."But Daddy, I NEED it!"
ReplyDeleteYou'll melt like butter on toast! Daddies of little girls are especially prone to this particular disorder - my husband once bought our 2 year old the ugliest stuffed shark on the planet, because "she picked it out"
Folded like a cheap lawn chair, he did!
Thanks again for keeping all of your fans updated! Praying that both you and Tricia get to visit your little valentine later today. God Bless!
ReplyDeleteMy thoughts go out to you both... take care
ReplyDeleteLook at your sweet rose with that little hat on! So cute! Sounds like you and your girls had a great Valentines Day celebration! :-)
ReplyDeleteP.S. - I think your hair is lovely -- don't listen to everyone else!
That little one has you wrapped around ALL her fingers, toes, and her heart, huh? What a sweet day. Thanks for sharing it with us.
ReplyDeletep.s. My hubby's still in the dog house for showing up empty handed! Maybe he'll get that love letter written today....
love that stuff toy you got tricia and glad you put a video for the full effect!
ReplyDelete*jealous*
Glad to hear that Tricia is doing well after her surgery. :) Love her singing dragon, and all of the cards for Gwyneth.
ReplyDeleteMy daugher had a barium swallow yesterday. Ick. She had an esophagial replacement do to swallowing an acid in her home country of Africa. They removed the old one and made a new one out of part of her stomach. They did the barium yesterday to make sure her new esophogus was not "leaking". Only 1-2 more weeks in the hospital....Yeah.
ReplyDeleteWhy I am writing this who knows, just that I know a little bit about hospitals and procedures thanks to my daughter. Tricia's schedule does not sound fun by any stretch of the imagination.
Praying for you guys!
With Love and Hope,
William's Mom
www.specialneedsbaby.blogspot.com
aww..sounds like your girls had a awsome valentine's day this year! i told my g-ma about your story and giving her updates on Gweyneth and she thinks that it's a truely amazing story! you guys are my inspiration..god bless...you will always be in my prayers..Bonny in TX
ReplyDelete1) You're hilarious! Thanks for sharing your humor with the world.
ReplyDelete2) Thank God everyone is doing well still!
Still praying in SC!
My baby has been sitting here quietly on my lap until I scrolled down to the pics of your hair and she started laughing. haha
ReplyDeleteI like the little hat! If it never hits the floor you get to keep that kind of stuff :)
I'm really glad that Tricia is getting more sleep these days.
We're still praying! Keep those pictures and updates coming!
I love the pics of Gwyneth in her knitted hat! And the one of Trish and her adorable stuffed animal is so cute! You can just tell from ALL her pictures what a wonderful person she is and what a great personality she has! You two make an awesome couple (at least from all your blogs and movies - never met you guys in person, which I feel is MY lose!). Keep shining God's love throughout the blog world! You all remain in my prayers!
ReplyDeleteLove little Gweneth's V-Day card, so perfect for her! I actually happened to get the same one for our little baby's 1st Valentines Day card! Except at 17 lbs. I don't think mine has quite the same meaning :o).
ReplyDeletePraying for many great days ahead.
Nate you crack me up!! Love the hair post below!! Anyhow, could you kindly share how you are "antiquing" your photos?? They look so wonderful with the soft color shades:) I'm no pc expert, but alot of folks use a Mac...thats beyond my comprehension...lol AdobePhotoshop Maybe??
ReplyDeletego Tricia! wooooohoo! bike ride for PT. hope it went good give all you got girl...god bless~~~i am so glad your baby girl is doing great today! thanks for posting~!
ReplyDeleteHappy be-lated Valentine's Day, Tricia, Nate, and Gwyneth!!!
ReplyDelete(I thought I had posted this before, but goofed it up somehow! *~*).
Thinking and praying for you all!
~ becky b
Great job finding the best Valentine's Day card ever for your little Valentine - I gave the same one to my tiny preemie this year, too!
ReplyDeleteGet well soon!
~MJ
I agree with Tricia about the barium! I feel for you and your "bug", my hubby under the weather too! It is hard for your support system to feel bad, but take care of yourself. I really laughed about the lawsuit about PS I love you, you never fail in all your tribulations to make me smile! Give your girls a smile from me....my totally unsocial stepdad has started grocery shopping since my Mom is staying at the hospital w/ me. LOL!
ReplyDeleteI've been reading your story for awhile,Thanks for sharing,and putting on the beautiful pictures.
ReplyDeleteOh, my, those are the SWEETEST pictures of little Gwyneth!! That precious, precious baby! I know she is so much smaller than the pictures make it appear. Still praying for you all, and praying you are not getting sick!
ReplyDeleteI enjoy reading your blog and am keeping Tricia and Gwyneth in my thoughts.
ReplyDeleteAs a nurse myself, I just wanted to comment that I am sure the nurses would prefer to let Tricia sleep, but they have a job to do. It is very difficult to get sleep in a hospital for a variety of reasons, the nurses being just one of them. A patient's sleep does not depend on the "willingness" of a healthcare worker to let them sleep.
Best of luck :)
Did you know there's a beutiful song The Beatles wrote called "P.S. I love you"? Maybe you can sing it to Tricia if you like it.
ReplyDeleteAll the best for you two!!!
You like hallmark I can tell.. with the webkinz pup, the card and Bernice the dragon. Just a pointless comment.
ReplyDeleteHey Nate,
ReplyDeleteDon't see the movie "PS, I love you." It is not a movie for the place you are in. When your sweet wife is well and your baby is home and all is good maybe but then maybe not.
Just my opinion,
Beth Johnson
Montgomery, Al
The card was truly perfect.
ReplyDeleteTake some rest and I hope uou are well enough to be with your two favourite girls soon
I feel for you Tricia. I had to do about 8-10 barium swallows last year to see if I still had the hole in my stomach from my botched bariatric surgery. I TOTALLY feel for you. Out of the 9 surgeries and 2 1/2 months in the hospital, etc....The BARIUM SWALLOW was the worst. I'd rather be hit in the head with a baseball bat. My prayers are with you today. Hang in there sweet thing. Heather Rice
ReplyDeletehttp://www.ricetrio.blogspot.com
I love the card! That is just perfect. Still praying for Tricia and Gwyneth...and for your health as well.
ReplyDeleteI remember my daily schedule looking like that. I can't wait to read all of the updates on Tricia's post-transplant life!!!!! Your family is in my prayers, as always!
ReplyDelete