Well...I know we haven't posted in...way too long...and so people aren't too up to date on Grace and her happenings.
I apologize profusely.
So, to quickly summarize...
Within the past 2 weeks we have had some big changes.
Week of November 2-8
Grace eats between 50-60cc on her own, 2-3x a day
Week of November 9-15
Grace eats between 60-70cc on her own 3-4x a day
November 13, Thursday
Grace has her usual Cardiology appt. Her Echo doesn't look so good. There is more than normal leakage from her Mitral valve. Could be a sign of rejection, could be nothing, could be something. Reschedule for Monday to check into it more
November 17, Monday
Grace has her check up on the Mitral valve problem...all seems well. Mitral valve leak seems back to normal, if not better. All is well!
November 16 & 17
Grace eats between 70-75cc on her own 4-5x a day
November 18
Grace pulls out her NG tube, and her mom is too lazy to put it back in.
So, NG tube stays out for all of Tuesday, Tuesday night and Wednesday
During this time, Grace eats 70-80cc on her own, 5x a day, and wakes up twice during the night to eat some more!!!!
Talk about amazing!
The process seemed to happen so slowly that Topher and I didn't even really realize how well she was doing until...all the sudden...she's eating 3/4 of her feeds...on her own, and doing it 5x a day instead of 3.
November 20, Thursday
Grace has her usual Thursday appt. again...
Echo looks bad...again...
Her mitral valve had leakage again, and it was worse than it has been thus far
So...in case you haven't guessed yet.
We are in the hospital.
We admitted her shortly after her appt. and so we are just hangin' out on the 3rd floor.
They have bumped her scheduled biopsy from January...to tomorrow morning.
So, bright and early tomorrow morning they'll be doing a biopsy to check for possible rejection or any other problems.
Please pray that all is well and normal.
If there is any sign of rejection, we would have to start all over at ground zero again...not only with her medicines and immunosuppressants, but also with her super strict House Arrest...
We had just BARELY gotten permission to visit some family and to possibly take her out for the Holidays...and we also were at the bottom of our taper for her steroids..
This would be a big step backwards...and we were really hoping to go the OTHER way.
*big sigh*
I keep telling myself that there are worse things...that we should consider ourselves lucky that the Doctors found whatever this is early on, and in time that anything that needs to be done can be done in the right time frame. I also have tried to tell myself to just be grateful. There may be rejection, but it isn't effecting anything other than this valve. She is happy, playful, sweet, eating well, sleeping well and just an angel.
I really am so grateful for how miraculously well she has done thus far. I guess it would just be too easy if we didn't have a bump somewhere in the road.
Topher, his Dad and my Dad were able to give her blessing this evening, (thank you so much!!!) and I feel confident everything will be fine. This little girl is too feisty NOT to make it through ANYTHING...
But, a mommy can't help but worry when her sweet baby's health is possibly compromised.
Please pray for our sweet little girl, and for me to find more things to be grateful for, instead of things to be pessimistic about. :)
We love you all so much and are so grateful for everyone's prayers, and support.
We'll try to update over the weekend to let everyone know how it all goes.
We'll most likely be here tomorrow night and possibly the night after as well.
Thanks again!
Love the Andersens
p.s. oh, and sorry for the lack of pictures...
to paint you a picture...Grace is cuter than ever...trying her darndest to stand up...she loves to jabber and is constantly chanting "a ba ba ba ba ba", and occasionally a 'ma ma ma'...but I think its accidental. :)
She's adorable, sweet, feisty and fun, as well as a big pain in the butt at times. :)
I'll try to include a picture next post!
16 comments:
Oh, dear little Gracey, keep up your feisty spirit!
I'm so glad she's been eating so wonderfully on her own!! Of course it's just in time for her to have another challenge to deal with, but at least she's finally eating again. Whew.
However, Alysia, you really shouldn't feel bad about being frustrated and worried about possible rejection, or her leaky valve. Those are two very big things to worry about, no matter how many other things are going right.
I heard about this early this morning - we've been praying doubly hard for her since last week, in fact - and have been thinking about Grace all day. We're worried, but believe like you do that Heavenly Father will watch over her.
I know he'll watch over and comfort you as well. And please do keep us informed, but at your own pace :)
We love you all and are praying for you.
Auntie aj :)
.....
PS. Go COUGARS!! Sorry, Toph, I had to throw that in in there just for YOU!!
wow that is alot to that in. I am hoping and praying all goes well she is a fighter. Keep us posted we were all looking forward to seeing you guys next week hope it still can happen. Love you Allie
Good thing Dacia keeps us updated ;) We've been praying all day. We love you!!!
Darn-it! I'm so so sorry. Sending all my love and prayers. Even if things do work out fine, it still must be so incredibly hard. Love you guys.
First of all... AMAZING GRACE eats from a bottle again... WOO HOO!!!
I'm so sorry that you are back in the hospital and that you have another biopsy tomorrow. I'll be praying for you all!!
Andrea
Wow will keep you in our prayers. Has mommy gotten a blessing to help her through and not get too down at this set back?
I am glad to hear she's been eating well.
we love you and so does Heavenly Father.
I asked my girls what you could be thankful for sash who is 4 said you blankets to keep you warm.
Elise said that Grace is strong.
Bev
I am sorry that you have to go through this. We will pray extra extra hard that it is not rejection. You can handle this, you are a strong and wonderful mommy. Gracey is very lucky to have such wonderful parents. Have faith. I came across this quote and love it.."God will send aid to no one more readily than he will send it to a child-and to the parent of a child." Sending our prayers, Much love, Hilary
Gracey is unbelievably adorable! I just love her pictures. I am praying for you.
We will keep you guys in our prayers!!!
Bless her heart beautiful little girl. I hope everything goes well! I will keep her in my prayers!
Thought of you all night after you called me last night. You are ALL in my prayers. Please call me or update the blog after her cath so I know how things went.
Praying for you guys!!!
Like right after I read this, I said a prayer. I'm getting better at it. :D
I miss you so much!!
Love alllllways,
Christi Ann
Oh my goodness, I am so sorry to hear about your hurdle. I will be thinking of little Gracie, hoping that her fiestyness and eating habits are a sign that she will continue to fight!! Thanks for the update. Hang in there....
I've been following your blog for a while after I saw you had my Sophia's blog listed on your blog. My prayers are with you and your family and if you need ANYTHIG please email me as I just went through a pretty scary time like you. TJJune297@gmail.com
Hey there-
I am so happy about this post. What a sweetie pie. I have a question... what kind of formula are you feeding her? I am struggling in the NG department... and she only wants to eat breast milk, which I have zero of. Just curious about what she liked.
I am happy about the eating and babbling... not the hospital stay!! just to clarify ;-)
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