Today has not been the best. I guess early this morning she was throwing up again. She did it a couple of times and it was a little bit blood tinged. Since I have been here today, she has thrown up once. So they started her on some Prevacid to see if that will help out a little. Also her heart rate and respiratory rate have been high today. They like her respiratory rate (how many times she breathes per minute) to be in the 60's or 70's and hers have been in the 90's, spiking over 100 at times. So they put her back on the high pressure nose cannula. Which means NO third floor. She continued to be high so they up'd the pressure from 3 to 5 and it did not make any difference in her stat's. So she remains a mystery that they are trying to figure out.
My picture today is of Little Miss Mittens. You probably can't see, but she has a scratch on her right cheek. They are keeping the mittens on her so that she won't pull her feeding tube out or scratch her cute little face. I took this picture to show what the 'wound vac' looks like. It is pretty fascinating. They changed the dressing today and will again on Wednesday and Friday. When they took off the old bandage, I thought the wound looked pretty bad, like always. But the plastic surgeon came in and said that it looked good so I will take his word for it!
So, it looks like we are in another waiting game. Hopefully little sis will turn around.
p.s. They have cleared out the three beds to the side of us because the ceiling is leaking! I hope it doesn't hit our 'presidential suite' (that's what Tom calls it because we are paying so much money for it!!). We like our spot here and don't want to move. Even hospitals have breakdowns.
p.s.s. Gracie measured 22 inches today, up from 20 inches at birth.
22 comments:
Growing in so many ways! Sorry for the little setbacks, hopefully she's just gathering strength for a big push forward :)
I know you don't know me but I have been looking at your blog keeping up to date with little Gracie. I knew Tiffany back when we were first at college so I'm not some random blog stalker. I have a 2 year old that went through a bone marrow transplant over a year ago and its still a waiting game. We never have black or white anwsers which is hard. I lived in Stanford hospital for 4 months which was hard, so hearing your stories about having church in the hospital I can relate. I just gave birth to my forth baby March 29 so they are close in age. Sounds like you are keeping pretty positive which is the only thing that helped me through everything. I pray and think about Gracie everyday. Hope it keeps going in the right direction for you guys!
We have all learned that Gracie is on her own timeline - one she and our Heavenly Father have worked out. It would be nice if she could let you in on it :) !! We continue our prayers for your family. love - Amy
Hi Michele and Tom! We love your blog and have shared it with so many people. You continue to remain so strong! My favorite pictures are of the ones where you guys actually get to hold sweet Gracie! I am so glad you have so much support around you - it literally carries you in such bitter-sweet times! We love you and are still praying for you!
PRAYERS...PRAYERS...PRAYERS! All my love and support is with you guys and don't worry, it will all happen in God's hands!
I'm so glad to see that Gracie is making improvements, even if it's slow moving. I'd like to tell you differently, but life with an HLHS baby is a lot of two steps forward, one step back. But all that matters is that you are moving in the right direction! We'll keep Gracie in our prayers.
-Alison (Abby's Mom)
She just likes to keep us on our toes! She must have known you would miss your "suite". She is a tough little gal and can handle whatever life throws at her! In our prayers always...
Gracie,
You sure like to keep us on our toe's We hope you have a better day tomorrow. You sure are precious and we all love you bunches! Sleep tight and we will check on you agian in the morning.
Hugs and kisses,
The Bunkers
This is Spencer. Gracie's scab is a little visable it looks so big. I am glad Taylor got to hold Gracie.
She is a strong baby she will always be a memory of mine. I might of said this before she is a blessing in my life and in many others. I have been praying and fasting for Gracie and your family to be strong. If you need any help my family will be there for you.
Owen's respiratory rate was always in the low 100's until after his GLenn. The high flow oxygen never helped...sometimes they just breath fast. I hope Gracie's comes down so you can head up to the third floor and get some rest. The would vac looks fascinating! Gracie is doing wonderful and she'll pull through like she always does :).
Andrea
Owen's Mommy
Hi Spencer,
I thought I'd better clarify that the dark spot under that plastic tubing is a sponge, not her wound. Sorry about the confusion, thanks for the comment Spence, you're the best!!
Michele
Gracie's mom
Oh sweet Gracie!!! Hopefully she can get that breathing under control! It's amazing how far she's come. Sunday dinner was a family discussion about this 'little stranger' that we've all come to love. I thought then...'two steps foward and one step back...'
I think she will rebound and you'll soon have her running through the house chasing the other kids...we will continue to pray for this special little angel...this miracle baby.
Tam
She's just so cute, crazy vac on her chest and all. :) Thanks again for letting all of us come along on this wild roller coaster of ups and downs. My heart aches for what you must feel. We love your family and pray everyday for all of you!
Hi Michelle...
My husband now checks in on Gracie with me, and we were so excited for her to be able to go to the 3rd floor. We're so sorry that didn't happen today, but will continue to pray for her to reach those milestones. My husband noticed that she looks like she had grown. That treatment for her wound is quite the contraption. I just continue to be so grateful for modern medicine and amazing doctors. Gracie is a strong little girl, and she wants so badly to go home with her family. Keep fighting Gracie Girl! And stay strong Michelle, we're all thinking about you!
Teresa in VA
I hate those little steps backwards! The one thing that we have all learned from little Gracie is that she is strong and that she is a fighter, Heavenly Father made her that way! She will make it to the third floor soon, when she is ready for it! I know that it is so hard waiting for it to happen but it will happen! Gracie will pull through and instead of just taking baby steps forward she will start to run! Still praying hard for her!
-Caralee Baker
We keep praying for your family and Gracie. Sorry that she has taken a step back ....hopefully today she will take two steps forward.
Sorry it wasn't a good day for you but Gracie is a fighter and I'm sure things will improve. She has touched so many lives. She has helped me come to know my own kids better - I see their compassionate sides come out when they ask about her every day after school and their faith as they continue to pray for her, completely sure God is listening. She has been a miracle in our lives and I'm so grateful for that! I hope you make it to the third floor soon and until then we'll keep praying for your miraculous Gracie.
Love,
Melissa
So I was reading your Sunday blog and it reminded me of my niece when you mentioned Gracie being "your little drug addict". She was in the hospital for 3 months when she was born. The doctors told my sister-in-law that was going to be the hardest thing when they went home, to wean her off the pain medications and they were going to do it slowly. Well the pharmacy got it wrong and they had the levels way too low and she screamed for 2 whole straight days. They took her back in and realized the mistake, poor baby! Anyway this little girl is now a healthy, fiesty 4-year old after a very rough beginning. It can happen!! Keep the faith.Love, Julie
Some day when your stress level is lower and you have time for the mundane things in life, like going to a movie, you need to see "Iron Man." His damaged heart is powered by a device that bears a striking resemblance to Gracie's wound evac.
Iron Man is just a comic book superhero, but your Gracie is a real-life superherol
All the best,
jdb
Gracie, I'm sorry you had a rough day. There are so many people that you have helped in the short time you've been here on this earth. Even though you need help with your physical heart, your heart is really strong where it counts the most!
Love you and your family. Here's hoping you get to go to the third floor really soon.
The Millers
She just wants things challenging doesn't she? I just hope this doesn't last into the teenage years too, then you're really up a creak! I'm sure it seems like one thing after another but to look back on that difinitive picture of Gracie when she was fresh out of surgery and on the ECMO with a "million" lines running into her tiny body goes to show that she has come such a long way and has fought so hard! She'll continue to fight even if takes a bit longer.
Love her and you guys too.
Just want to let you know my thoughts and prayers are still with you and your family!
Post a Comment