Edited
from Carepages
May
06, 2008
Happy Birthday, Madalyn Jayne! My baby girl is 6 years old!! Can
you believe it?? I truly can't. Six is just one of those numbers
I never even could bring myself to plan for. She's almost finished
with kindergarten and will be starting first grade next year.
It's so hard to believe.
Maddy
is doing really well. You should hear her read! She can pick up
anything and just read it. She is doing incredibly well. We are
so very proud of her and so very blessed to have her here with
us.
Trust
me, not a day goes by that I don't thank God for the blessing
I have with both of my girls each and every day. Nothing is taken
for granted.
Well,
I'm really tired tonight...I can't think straight to type too
much. I just didn't want this day to pass without sharing the
celebration with all our friends.
Hugs,
Barbara
April
25, 2007
Maddy has her annual check-up with her
cardiologist on Friday. She'll be having a chest x-ray, EKG and
her visit with Dr. Teske. Please send prayers that we get nothing
but good news and no surprises!
Thanks for all your support and prayers
for our friends!
Hugs,
Barbara
November
10, 2006
Just
a couple of Maddy stories to share with you and an update. Tuesday
morning as we were getting ready to leave for school, Maddy came
up to me and holding her hands apart asked, "Which side of
my heart is broken, this side? (moving her right hand) or this
side (indicating her left)?" I told her the right side and
touched that hand. She asked some more questions and I told her
to wait until we get to school so I could show her on the model
heart that we have.
When
we got to school, I got out the model and showed her the 4 chambers
and explained they were like rooms. The model has two "tissue"
valves on it so she could touch them and I explained those are
like doors. I told her when she was born, she didn't have this
door in her heart (pointing to the tricuspid valve) and that because
of that, this room in her heart (pointing to the RV) was really
tiny. Maddy, being all girl, said, "Awwww, was it cute?"
as she thinks anything teeny-tiny must be cute. I said, "Well,
it made you really sick, so I didn't think it was very cute."
She was satisfied with that answer and then went on to ask a lot
more very thoughtful questions about the different parts of the
heart and I explained to her in very simple terms what her surgeries
did and how she really only had two rooms in her heart instead
of four and that is why we say she has "half a heart."
She
seemed very happy with all the explanations and I was telling
Todd about it that night. He said, "That explains it!"
I said, "What?" He told me, "When I was picking
her up from Nana and Papaw's she came out and tattled and said,
'Sidney (her cousin) kicked me in my broken door!'" I laughed
because at least she comprehended something. Although, now she
talks about "the door to her broken heart." So sweet!
I
guess I never really let myself think too much about what it would
be like as she got older and began asking questions. I love that
she just takes it all in stride and her heart is something to
be proud of and accepted, not something that makes her "different."
This
morning, Nana was telling me yesterday that Maddy and Sidney began
asking her questions yesterday and talking about dying. Sidney
said she didn't want to die and Nana said it was just taking a
trip - a trip to be with Jesus. Maddy said that she wanted to
be with Jesus. (Please, Lord, not for a long time). Nana assured
them both it wouldn't be for a long, long time.
Then
she asked Nana a question that broke my heart when she told me.
She asked, "Nana, am I going to have many birthdays?"
Nana, being the wonderful Nana that she is, answered, "Well,
I have had 55 birthdays, so I think you will." Maddy said,
"Fifty-five sounds good!" and then moved on with her
conversation.
I
am just so amazed at her insight and understanding. She is growing
up so fast. I never really let myself believe that we would see
4 1/2 - it's amazing to me. But the wonderful thing about that
is we don't take any of the days we are gifted with for granted.
Each one is one more than I thought I would have. Even those days
when she exasperates me beyond belief (and she does) I am thankful
she is there to sass me! (Her new trick is to put her fingers
in her ears when she is getting a "talking to" and saying,
"I can't hear you!" - where do they get this??).
Todd
picked Maddy up from Nana and Papaw's last night after his parent-teacher
conferences. As they were leaving, she promptly threw-up and then
a couple more times last night. So, poor thing isn’t feeling
well. Luckily, I didn’t have school today to make up the
time from my parent-teacher conferences this week. So we are just
going to take it easy today.
Well,
I hear the pitter-patter of little feet upstairs. This got longer
than I expected. Hope all is going well with everyone.
Hugs,
Barbara
June
10, 2006
Yesterday I spent with Todd and Olivia, Maddy and Kimi. We went
to see "Cars" and then out to dinner. Maddy got bored
after an hour at the movie -- it's a two hour movie and I didn't
see anything funny in the first hour. Anyway, Maddy and Kimi and
I went outside where Kimi taught Maddy cheers. I don't know what
was said but Maddy came up to me and told me I should have been
there when she was at the hospital. I said, "Do you mean
last week when you were on TV?" "No, when I had my surgery."
And she pulled up her shirt to show me her scar. I told her I
was there, a lot, that I had brought her the new bicycle and new
shoes so she could ride. She didn't remember and I thought, what
a blessing -- she has a scar but no real memory of me taking her
into the "bad" room (procedure room) or a lot of the
other things in the hospital.
After
dinner I was taking Todd and girls back to their car and I told
him what Madalyn had said. He turned around and asked her, "Maddy,
do you remember what you said to Daddy when you were in the hospital?"
She said no. And I said, "Do you mean the 'Daddy, please
don't leave me,' cry? He looked at me so sadly and said, "Those
words will forever be in my ears. I can't tell you how blessed
I am that those weren't the last words I heard her say. They could
have been."
And
then I thought, we need to be very careful about any words we
say to someone because they might be the last words they ever
hear coming out of our mouths. Words can be so cutting, words
can be so hurtful. Don't just hug your kids tighter, hold everyone
more gently with your love, thoughts and words.
May
peace be with you all,
Nena, Nana to seven wonderful granddaughters -- I am so blessed!
May
06, 2006
Happy, Happy Birthday beautiful Princess Madalyn! I cannot believe
she is four!!! This birthday seems surreal. Last year, it was
all about "marking time." We had a HUGE Princess birthday
party for her and invited all the family and it was her "last
public appearance" before her surgery.
Turning
three was so tied up in having the Fontan, that it was a blur.
It was all about experiencing everything and grabbing onto each
and every moment. I don't know if I ever truly expected her to
make it to four. I don't know if I've really planned beyond what
three might bring. Four seems like a whole new plan.
She's
not a toddler anymore, she's a true preschooler. Her "planned"
surgeries are behind us. She just had a really good visit with
her cardiologist - the whole world seems to be stretching before
us and it's an amazing feeling.
But
this is truly a bittersweet day. With big anniversaries, like
birthdays, it's so easy to remember where you were one year ago.
And one year ago, the Fontan Four were all awaiting their surgeries.
Lauren was still with us and we were "anxiously optimistic"
about what the summer would bring.
Lauren
and Maddy celebrate birthdays just 3 days apart. Lauren's is coming
up on Tuesday, May 9. Last year, we celebrated Lauren and her
big sister, Miranda's, birthday the weekend before we celebrated
Maddy's. Our best picture of the Fontan Four that we have of them
all together was taken at Lauren's party.
Then
we had Maddy's celebration and we were missing Max, but I posted
a picture today of Maddy, Zane and Lauren together at Maddy's
party.
It
hurts to look back on those pictures. It's wonderful to have the
memories, but to remember the optimisim and hopes we had for that
time are hard. So please keep Lauren's family in your prayers
today. As we celebrate another year for our baby girl, they are
facing the first birthday without theirs and I can't imagine how
hard that is.
As
Steph always says, hug your kids a little tighter.
Love,
Barbara
April 28, 2006 at 01:56 PM EDT
Madalyn is feeling a little under the weather. Yesterday was the
class field trip to the zoo. So, of course, she woke up that morning
with a fever. She didn't have any other symptoms and I suspected
it was her ears. We couldn't get her in to see her regular doctor
and I did not want her to miss the zoo. She had been looking forward
to it so much. So, I dosed her with Tylenol and off we went. She
stayed with me all day and she did fine. A little tired and she
slept all evening. She
is still not complaining about her ears, so now I'm thinking maybe
it's a viral thing.
Today, Maddy had her 6 month appt. with
her cardiologist, Dr. Teske. Even with the slight fever, she was
still satting 93-94% so looked great there. She had an echo and
EKG and they said they were able to get really great pictures
on the echo. She was such a big girl! She was pretty cooperative,
even for the dreaded "stickers." ;o) The echo was good
- the tech showed us her Fontan and Glenn connections. Didn't
mean much to me, but they must have looked good!
Anyway, Dr. Teske said all things looked
great. The heart wall and muscle look really good, her remaining
valves are doing great. She remains in junctional rhythm, but
he is comfortable with that right now as long as she continues
to be able to function normally. When we start to notice that
she isn't tolerating the lower heart rate, then we'll probably
talk pacemaker, but that may not be for many, many years.
I basically asked the, "What next?"
question. After having the Fontan looming and knowing it was coming
and now to have it behind us and nothing scheduled, it's kind
of intimadating. I asked if we would just continue like this and
he said, "Yes." He fully expects her to continue to
do just fine and to just grown up and live her life. We don't
even have to see him again until a year from now! He said, of
course, to contact him if we are concerned, but otherwise they'll
do all the tests again a year from now.
So, a wonderful visit with no surprises
- just the kind we like! I feel extremely, extremely blessed.
There are so many children and families struggling right now that
I don't take any of this good news lightly. I know what a great
gift we have been given with this great check-up.
Thank you for visiting and checking up
on Maddy. Hugs to you all!
Love,
Barbara
April
12, 2006
Hello!
I just wanted to stop in and share some cute stories with you.
We are on Spring Break this week - hooray! So we've been at home
and for the past two days Olivia and Madalyn have been playing
"hospital." Olivia is the mommy and Madalyn is the sick
little girl (go figure).
They
were cracking me up this morning because they were walking to
the "playroom" (like the playroom at the hospital) and
Maddy was wearing her "heart monitor" (the baby monitor
with the "plug" end tucked into her shirt and Olivia
carrying the speaker box). I am the doctor and every few minutes
they come out to get Maddy's "medicine" which are Smarties
candy from Easter bags they got at a party last weekend.
Just
a few minutes ago Olivia came yelling, "Doctor, doctor! We
found the other half of Maddy's heart! You can put it back in
her now!" Through my laughter it brought tears to my eyes.
I
love to hear my girls playing together, when they aren't aggravating
each other (and me).
Love
to you all. I hope you have a very happy and blessed Easter holiday.
Love,
Barbara, Todd and the girls
March
09, 2006
These
days are bittersweet. I look at Maddy and see how wonderfully
she is doing, and think back to where we were a year ago. We were
getting ready for her pre-Fontan cath as were the other three
of the Fontan four.
Us
four moms (Me, Stephanie, Erin and Whitney) were e-mailing and
calling each other constantly. We each held our breaths, prayed
(or danced naked in the woods) and then felt such relief when
the next one would make it through the cath hurdle.
Then,
it was time to schedule the surgeries. We laughed when we found
out Max and Zane would be going back to back in May. "The
boys are back in town" was their motto. Then Maddy was scheduled
for June 7 and Lauren would be a week later on June 14.
We
planned the huge "pink party" we would have in July
after everyone was finished with surgery and home from the hospital.
We celebrated Lauren and Maddy's birthdays just a week apart in
May. Beautiful parties for two beautiful princesses.
We
watched as Max and Zane flew through surgeries, soared out of
ICU, only to be sidetracked by the effusion monster. This was
what we had all feared. We all knew the risks, and though we knew
the road might get rocky, none of us ever imagined....
Max
and Zane were in and out of the hospital. Max finally got sprung
and Zane ended up back in just after Maddy made it out of ICU.
While we would never wish for him the extended stay he had, it
was wonderful to be able to share that time with Buddy Whitney
and Buddy Zane making "hot cooked meals" in the playroom.
The
effusion monster got Maddy too, and extended our stay to almost
3 weeks. During that time, Lauren had her surgery. She made it
through, but her path was never easy. Effusions came and went
and were the least of her problems. Through all she fought, I
never allowed myself to think that the result would be what it
was.
Through
everything, Stephanie was always there for everyone. She was with
all of us the day of surgery, supporting us. Because Lauren was
scheduled last, and they were in a different hospital, we couldn't
be there for them as we wanted to be. My mom went to sit with
them the day of Lauren's surgery to be where I most wanted to
be, but couldn't.
I
can't even put into words what it is like to think back on a year
ago. We all knew and had heard the national statistic that one
out of four kids doesn't survive the Fontan. But our kids were
going to beat the odds. Our kids were doing so well, those statistics
didn't apply. Had we truly known that four of our children would
go into this surgery, but only three would make it through....those
are the times that I feel blessed I don't know the future. None
of us would have made it through last spring.
I
read back through journal entries and carepage posts and read
the optimism and hope that we all had. And it makes me angry that
all the optimism, hope and prayers weren't enough to change the
outcome. It makes me angry that my dearest friend hurts every
single minute of every day because her baby girl is not here anymore.
And it makes me angry that even if we had known the future, none
of us had a choice. We all had to take the chance, because without
the surgery, there was no chance at all.
So
these days I feel sad because I miss the naivete I had a year
ago, the hope and optimism that I can't seem to find anymore.
And my baby girl misses her first, best friend.
We
love you and miss you Lauren Faith!!
Barbara
December
07, 2005
Maddy continues to do very well. We are so pleased and amazed
with her complete turn-around since her Fontan. Nothing stops
her or slows her down these days. She has even worked up courage
to talk to Santa!
She
is a typical model in the special needs preschool program that
I teach in. However, she is not in my class. Mrs. Larsen and Mrs.
Law are her teachers and she loves them and all her "boyfriends"
in class. Mrs. Larsen has taught the children to say the Pledge
of Allegiance in sign language and Maddy can say and sign the
entire thing. It is so adorable! Last week, we saw Santa (it was
her Papaw, but she didn't know it - he makes a wonderful Santa)
and she did the Pledge of Allegiance for him. It was so cute to
see her do it and she was so proud of herself.
God
Bless!
Barbara
