Gracie's Getting Stronger Every Day

New Gracie Montage

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Happy Easter

I remember trying to process the extent of what the doctors told us that day that they sat us in that little room and gave us the options to do the surgery to “buy Gracie some time” or to choose “supportive care” – One of the first things that I thought about was all of the “firsts” that she’d never have – Well, as of last Friday, Gracie is  5 months old, and every day is full of firsts – This was her first Easter weekend.  On Saturday, we took the girls to a local nature center and got their picture taken with the Easter bunny – On Sunday, sure, Gracie and Daddy had to stay home and hang out while Mommy and Lyl went to church (Still can’t bring her around large groups in public – can’t risk having her be exposed to any illness this close to Boston), but later in the day we had some family over for Easter dinner.  To see my little girls in their matching flowered dresses getting pictures taken by the fence in the old red chair was a feeling that I can’t hardly describe – These things mean so much more to me these days -- Gracie still hasn’t cracked 11 lbs, and has some major chicken legs, so the little tights were so cute all wrinkled and loose tucked into her little sandals.  Lylli did her best to hold her sister, but Gracie sort of just melts into whoever is holding her, so this picture took a few tries –If I was flopping her around the way Lylli was Gracie would have been very unhappy, but when Lylli does it, Gracie just smiles.  There is no doubt that these little girls are crazy about each other –  Later,  Lylli scoured the yard for candy filled eggs and Gracie got to spend a little time in everybody’s arms – luckily the weather was beautiful and we were able to wander between our small house and the backyard.  I love having all those people at our house (although admit the scowl on my face may have appeared otherwise due to the fact that the prednisone made me a little extra anxious about everything) – but as I laid in bed last night reflecting on my weekend, I couldn’t help but smile when I recalled the images from Saturday with the girls all bundled up sitting on the bench with the Easter bunny and, Sunday, my beautiful wife in her Easter outfit and those little girls in their matching Easter dresses.  I look forward to more “firsts” and Easters for many years to come.  I hope that everybody reading this had as blessed of an Easter as we did.

I hope to have a montage of my own like this someday!!

Countdown to Bean Town

Three weeks from today we will be at Children’s Hospital of Boston in the midst of preparing to hopefully fix our girl.   As the day approaches, I’m sure the prednisone for my eye doesn’t help, I find myself becoming more and more anxious and emotional about the whole thing  – The feeding tube on 24 x 7, administering drugs several times a day, hooking her up to the oximeter often to make sure her oxygen level is OK – PT’s/OT’s/ home nurses and doctor visits all have just become part of our lives (I’ll admit Carrie deals with most of this) – Believe it or not, It’s easy to overlook all of that and forget that this smiley beautiful little girl is so sick.

 

I find myself every night laying in bed, staring at the knots in the pine ceiling,  trying to process what is going on.  There are so many pieces to our story these days -- it often feels a bit overwhelming – We’ve had a lot of family and friends that have had babies around the same time, and I’ll admit, I've started to notice some differences in the meeting of milestones from the other babies – I can’t tell you if these are because she has Down syndrome or because her unhealthy heart causes her to be tired more than most babies, or just because she has spent a third of her life in a hospital bed – Will this baby that spends hours every evening laying on my chest sleeping have twice the energy when her heart is fixed?  Will she always be so tiny?  She’ll be five months this Friday and just cracked 10 ½ lbs.  I used to wish that Lylli would lay on my chest and nap, but she didn’t want to have anything to do with it  – Gracie is definitely making up for it – every night she naps on my chest – we sit in the same black leather chair in the corner and bond – I pat her back as we sit chest to chest - I feel every single one of her heartbeats and think about how much I love this little girl and would do anything to fix her and about what our future holds.   There are so many questions that will be answered soon.  I haven’t really even processed the fact that she has Down syndrome – that really isn’t a factor to us.  I only care that she is happy and, hope someday, healthy and that she has the opportunities to live up to her full potential – the same things that I want for Lylli.  As I mentioned in an earlier blog, our friends recently lost their daughter – Obviously this is something that comes to mind quite often when I think about our trip.  It very much cements to me that there’s no  explaining why things happen the way they do – It’s at this point that I have to leave it up to a higher power and try to accept that there’s a plan for her.    

 

One thing that I’m really struggling with is sending her into surgery to save her life when she seems to be managing so well – I know that it has to be done and the best chance she has is to do this when she is strong and healthy, but it was easier to send her into the other surgeries when her heart was failing.  I know her heart right now is only working in a limited window of time and something needs to be done in order for her to have a healthy life, it just scares me so much.  I hear nothing but wonderful things about the doctors that will be working on her in Boston – Doctors that have fixed kids that were told by other highly respected doctors from around the world that they couldn’t be fixed.  Obviously you want to go to the best there is, but one thing I’m finding as we wait to have them check her out is when you go to the best, it’s very scary to think about what we can do if they say they can’t fix her – only time will tell.  That was the last time you’ll hear me even address anything besides the best of results from our trip – I’m trying to be realistic in this blog and put my thoughts out there, and will face whatever comes, but am fully expecting to bring her home from Boston with a four chamber healthy functioning heart. 

 

 

 

 

You've got to start somewhere, right?

Up before the sun today and out the door – Wasn’t easy, but I did it – I’m very scared after my run that I have once again created an unrealistic goal for myself – but this time, I will follow through with it – I covered just over 2 miles -- Most of it was walking and when I did get it up to a trot, my pace was embarrassing  -- not even considered a run, I’m sure, in many peoples’ eyes.  I am in big trouble but have to start somewhere –  These meds have knocked me back again – I am so out of shape, but I’ll figure it out.  It is going to take a lot of dedication, discipline, planning, and honestly luck to accomplish this, but one way or another, I’m going to finish this marathon in October – I just have to.

Fat Guy in a Little TCM Race Bib

I got an email out of the blue yesterday from an old friend from high school asking about how Gracie is doing.  It’s so nice to have an old friend from across the country that I haven’t seen in years checking in on my little girl.   I filled him in a bit, although it quickly became obvious that he has been following the blogs and her caring bridge site, etc because he knew most of it.  He then asked how my weight loss effort was going – It was with disgust that I was forced to confess that I had been sidetracked a bit since Gracie’s last stay in the hospital and the eye issue coming back, etc –  He could tell how disappointed I am with myself for allowing these things to get in the way at which point he said “let me tell you a story…”   -- he proceeded to tell me that based on an email conversation we had a few months ago and hearing about my desire to get into shape for my girls, etc that he used that as part of his motivation – I looked back at that old email conversation and saw that he wanted to lose 25 lbs to get to his goal of 200, etc – well since then, he has turned everything around and has blown way passed his 25 lb goal and as of yesterday has lost 43 lbs.   I can’t tell you how proud that made me.  He has returned the favor and has kicked in my motivation again -- As if that wasn’t enough – I got an email yesterday as well from Scott Hedin with an offer from he and his wife Amanda through the Eden and Reagan Hedin foundation with the  amazing opportunity to work with them and Optum Health Performance for help with coaching to help me follow through with my goal to complete the TCM marathon in October – more on that soon when I get more details, but I’m 300 lbs right now am realistically back to getting winded walking to my truck after work – but mark my words -- daddythefatty will finish a marathon in October in honor of my daughters and their daughters and to show that they have taught us all how to fight.  I sat in my truck talking to him about this with tears in my eyes – The amazing new people we’ve met, the daily proof of our large network of support,  not to mention the generosity and prayers from complete strangers who follow Gracie’s story -- I cannot begin to tell you what Gracie has brought to our lives.

RIP EH

I’ve been wanting to say something about this for awhile, but as usual have found myself paralyzed because I want to say the exact right thing.  My desire for something profound will have to be set aside and be satisfied with the following rambling – but know this is as heartfelt as I can be -

 

We met some wonderful families during our stay at Children’s hospital – but there was one family that I felt we connected with on a little deeper level.  They were a very significant part of our stay.  They had twins in August and spent, literally, hundreds of days at the hospital – as sometimes happens with premature twins, one of the babies was much more compromised than the other.   I don’t believe any of us has seen the other’s children in person, but through pictures, stories and following each other’s blogs/caring bridge – I, at least, felt like we got to know the little girls a bit.  We had conversations about doing what you have to do as a parent and that being nothing short of everything in our power to give our kids the best chance.  One of their daughters made it home – the other ended up with them in Texas  – They went right to the best giving her every chance - fighting tooth and nail, but for whatever reason, God decided that he needed Eden with him, and last week, she passed away.  It appears that they have a great support system and I’m sure in all actuality, they didn’t even notice that we weren’t there, but yesterday was her funeral and I laid in bed last night feeling so terrible that we didn’t go – It’s also the first thing that I thought about this morning when I woke up.  I hope they know that we both have been thinking of them constantly this past week , and I’m sorry if it was selfish, but this hit so dang close to home for us that we couldn’t get up the strength to go.  Please don’t take it as any sort of disrespect as our hearts are broken, but we too are travelling across country in a month to give Gracie a chance.  I realize the circumstances are different and I truly believe Gracie is going to make it, but I can’t help but feel like I should have sucked it up and been there yesterday.  One thing I’ve learned in this last year is that life can be unfair – as hard as this has to be for them, I know that they are also beaming with pride to have been the parents to a little girl that taught (and helped by being a donor) so many people so much in her short time on this Earth.  Bless you, Hedin family – and Eden, if you don’t mind, I know you’ve got your hands full up there learning the ropes to become the guardian angel for your sister and family, but if I could ask that you keep an eye on my Gracie from up there, I would truly appreciate it.

 

 

 

 

 

 

 

 

 

I'm gonna be a...

MOVIE STAR!!!

WWG

Don't take things for granted
Love the ones you should
Spend your days doing the things you do
For the greater good
Persevere and fight, giving all you've got
Until you've finished the race
And take the path in life without regrets,
Walking with Grace

More Walking With Grace

Your mama woke me early one day with news that changed me as a man
Seems our vision to wait awhile to give your sis a sis had started sooner than we planned
We laid in bed the rest of that morning pondering how you'd be
How excited we were to add another child to our already amazing family.
Oh what a lucky man I am
I can't say when I thought about how my life would be, this was what I had planned
but what I can say is that I’ve learned the most important things are not ones that can be replaced
that day we began our journey of walking with Grace


At one point they told us that you'd never make it onto this earth
Doctors visits and hospital tours prepared us for the worst
we believed in you and love and faith and vowed to do everything we had to do
so the day would come where we could share all this love with you
I witnessed the greatest love of all in your mother as she prepared us for this race
If love is enough, there was no doubt that the day would soon come,
we'd be walking with Grace


Just days after you arrived as your heart failed, the doctors told us of their doubts
we had to think through tear filled eyes of what life was all about
we chose the path we had to choose and said when do we start
this little girls already beaten the odds, now let's go fix her heart
We knew the first path we chose wouldn’t fix you, but was a path to buy us time
to search to find a way because I couldn't give you mine
we didn’t know how much time we had and quickly learned life would now be at your pace
but we won't stop 'til there's an answer now that we are finally walking with Grace.