3/21 - Happy World Down Syndrome Day

 

 

www.hedingrowingfamily.blogspot.com/

On the first day of our first stay at the Children's hospital, as I walked into the Ronald McDonald house – I'm sure I looked very scared.  I was greeted by a friendly guy that obviously new his way around.  He and his wife had given birth to beautiful twin girls at the beginning of August.  During our stay we met his wonderful wife and found ourselves having several spaghetti dinners together.  I've thought to myself many times throughout our stays there that Scott and Amanda Hedin are such a great example of how to handle having kids in the hospital with class.  They were so comforting to talk to as we went through Gracie's surgeries – It meant so much to have others to talk to.  They even gave Gracie a hand knitted Santa hat made from the extra yarn used to create the Santa hats that were made for their girls Christmas pictures.  When we went back again for our most recent stay, I was glad to see them, but so sorry to see that they were still there.  One of their girls has come home, but their other daughter is still in the hospital and facing many challenges.  I'm not going to say that I can tell you exactly how they feel, but as the father of a daughter that is also in the middle of a fight for her life, I can tell you that it is a very scary, confusing time and that prayers and positive energy help a lot.  I ask that you keep the Hedin family in your prayers – I also, cannot tell you how much the meal train helped that was created for us over our stay – This wonderful family lives right in Blaine, so I ask that you consider joining their meal train as well.  They truly were such a large part of our stay at Children's.

A link to the meal train is below    

http://www.mealtrain.com/?id=mn1fjt5k4a1t

to learn more about them:

http://www.hedingrowingfamily.blogspot.com/ 

snow bunnies

 

Take a Moment

Throughout life - Every single person has an awkward stage or something about themselves that they are insecure about.  Most of the time these things are outside of our control.  Take a moment and think about a time in your life when you felt that there was nothing that you could do to defend yourself against a person or event that pointed out that thing that you are most self conscious about.  Remember that moment when someone maliciously pointed out your insecurities in front of a group of people and they all laughed?  You tried to fight back, but there was nothing you could do to defend yourself.    Do you remember a time when someone casually said something without thinking that it may hurt you, but it did?  Maybe you’re not self conscious about it or maybe you’re just really good at pretending not to be – maybe there is something about you that is just different – many things that make people unique are the same things that are pointed out and used as a weapon against them when they are younger.  No matter what it is that makes you different, hopefully you get to a point in your life where you can celebrate it.    I’m not saying that if you have big ears or are a minority or are overweight or if you stutter or are gay or all of the above that you should feel bad about it -- everybody is unique – My hope is that that while you were reading this, for just a second you were reminded of a time in your life that you felt like you couldn’t defend yourself – not a good feeling is it?  Now – look at a picture of my daughter.  A little girl that has spent 51 of her 100 days on Earth in the hospital fighting for her life – A person that has taught me more in her three months about life than anybody in my 38 years.  Do you see her big beautiful brown eyes?  Can you imagine how important and valuable this little girl is to me and my family?  Did I mention she has Down syndrome?  Once again, do you remember that feeling you had when you couldn’t defend yourself?  Think about that next time you decide it’s OK to use the word “Retard”.

Some Quality Time

Last night I went straight to the hospital after work as I do every night.  Carrie had left a while earlier to get Lylli and to pick up some clothes, etc. from the house because we were fortunate enough to get a room again at the in-hospital Ronald McDonald House for a couple nights.  When I got up to Gracie’s room, she was laying in her bed staring at her mobile -- she looked so comfortable and content.  For the first time in 16 days, it was nice to see that she didn’t seem completely drugged and out of it, it was also the first time in as many days ,that I was able to take her out of her bed and hold her.  It was very nice – just Gracie and I alone in her room.  We rocked in the chair and talked about her stay in the hospital and her upcoming trip to Boston.   Ok, I was pretty much the only one talking (although she was pretty chatty yesterday) -  like writing in this blog, talking to Gracie about what’s going on is somewhat therapeutic for me.  I very much appreciate the support from family and friends, but sometimes get overwhelmed with everything  and just want a little time alone with her to tell her how proud I am of her and to thank her for helping me realize I want to become a better man.   After about an hour of sitting, talking,  and singing to her, my phone notified me that my other girls had arrived.  I rock for a few more minutes until I could make eye contact with one of the nurses and wave her into the room to help me maneuver Gracie’s tubes and wires and get her back into bed.  I stood by her bedside for a minute or two as her eyes got heavy.

After I was convinced Gracie was once again comfortable, I went down to the Ronald McDonald house.  I opened the front door and immediately saw the girls, who had entered just before me.  Lylli assumed that I was in there already and was running ahead of her mother scanning the room for her daddy – I heard her tell Carrie that she didn’t see me anywhere.  Never assuming I would have gotten there after them, it took awhile, but eventually she turned and looked behind her and saw me -- she ran across the room yelling “Daddy!!!” and jumped into my arms.  Between my time with Gracie and the greeting I got from Lylli – For a short period of time, I forgot about any stress I had in my life.  

This Song Hits Home!!!

It's Been Awhile ... Part 2

Those pre-surgery meetings are difficult.  It’s so scary to go over the risks with the surgeon and anesthesiologists and then sign the various consent forms to allow them to go through with it anyway (or in my case, watching Carrie sign them due to the fact that I’m superstitious and don’t want to change our luck). 

 

I got to the hospital a little before 11 and hung out with Gracie and Carrie before surgery – The “case” before ours didn’t go as smoothly as they anticipated so our 12:30 meeting with the surgeon ended up to be around 4 instead.  Carrie made sure the doctor had a bite to eat and was rested before it was Gracie’s turn – I think she may have even offered him a neck massage.  He assured us that he was ready -- Around 4:30 we helplessly watched as  they wheeled her away for surgery.  A few hours of leg shaking and pacing later, one of the doctors came into the room in her surgical attire and said that the shunt replacement went very well and that she was off bypass.   We were so relieved and could finally exhale.  About an hour after that, the same doctor came back in with a concerned look on her face.  We were under the impression that since her last visit, they were working on cleaning and sewing her back up – As it turns out, her sats started to drastically lower with the new, larger (4mm) shunt, so they were forced to put her back on bypass and put in an even larger (5 mm) shunt.  It sure would have been nice for them to tell us that this was happening!  She also, at that point, informed us that if this larger shunt did not work, that they had done everything medically they could do and that we would need to consider life support, etc.  I can’t say that I’ve ever been hit harder in my life than when I heard those words.  We sat quietly together in shock for awhile hoping that her numbers went in the right direction and waited to see Gracie again.  Thankfully, a little after 9 PM we got word that they were wheeling her back into the room soon – The nurse assigned to Gracie at that time, although a decade into her career, had recently moved from Texas to Minneapolis and was newer to this intense environment – so we listened as a more experienced nurse yelled across the floor about how it was up to her, but she may want to make “the parents” leave the room and go to the family lounge because the transition back to her room may be “too intense for them”.   So we reluctantly walked down the hall and waited for some news.  We alternated between sitting and pacing, eventually, the surgeon came in and talked to us about the procedure.  You could see, in his eyes, how long his day had been – It was the second time that he saved Gracie’s life.  We are very thankful to have had such an accomplished, capable surgeon working on Gracie’s heart.  Eventually we were told that we could see her, so we made our way back to the room to see Gracie.   It’s very hard to see your child completely limp on a respirator, hooked up to dozens of machines with blood flowing out of the drain tubes coming from her chest.  I spent some time at her bedside.  Once we confirmed that she was as stable as she could be given the situation, I made my way to the floor below to try to get some sleep because I had to go to work the next morning.  Carrie stayed all night by her side.   Every day since, Carrie has been there and Gracie has gotten a little better.  The hospital life is taking its toll on all of us, but we are very thankful and know that things could be much worse.  All evidence points to being able to bring her home in the not too distant future.  

 

In the days following her surgery,  Carrie worked with the folks at the hospital to get Gracie’s most recent Echoes and Cath put onto CD’s and sent to the infamous Dr Del Nido and his team at the Children’s hospital in Boston.  We’ve been told if anybody could fix Gracie, it would be him.  A few days later, as I was getting ready to go to work, Carrie slammed open the door of our room at the Ronald McDonald House carrying her laptop and said – READ THIS!!!!  It was an email from a doctor in Boston saying that they had met as a team and gone over Gracie’s CDs and think they have come up with a plan to fix her.  You know that feeling I referred to above when they mentioned life support – this feeling was the exact opposite – this was what we’ve been hoping and searching and praying  for since we found out very early in the pregnancy that Gracie’s’ heart was so messed up.   As appreciative and grateful as we are to those at Children’s MPLS for getting us to this point, they have not yet been able to give us a long term solution to fix Gracie’s heart.  Their goal was to get her home, and they did – It was up to us to figure out our next steps because the path we’ve started would only give her a few years at best.   I know that our surgeon here is skeptical of our choice to go to Boston, but Dr Del Nido has fixed some kids with very serious heart issues like Gracie as well as with Down syndrome.  We have no choice but to get her there and hope and pray that they can fix her.  Our friend Max just saw his doctor yesterday in Fargo – he too was fixed by Dr Del Nido’s team around the beginning of this year – His doctor told him that he can now be treated just like a normal little boy because his heart looks great!  We hope and pray that someday soon we can say the same about  Gracie.  To think at one point, they gave us a less than 3% chance that Gracie would even be born and today I sit here waiting for the call to figure out the details of when we’ll be going to Boston to have her fixed - tears come to my eyes as I type just thinking about it.   I know we have a long way to go, but  I just know that this little girl is destined for great things.  We have so many people to thank that have gotten us to this point, but I ask that you keep that positive energy coming a little longer as we make our way to Boston!

 

As many of you know, I have vowed to lose a bunch of weight this year.  It has never been more important to me to make myself healthy – How can I watch my daughter literally fighting for her life because she was given a messed up heart while I live a lifestyle that ruins my perfectly healthy one?  That said, I don’t know how I’ll pull it off, but for both of my daughter’s and my wife and to prove to my girls that things that appear impossible, with determination are possible, along with my good friend Dave Schroeder, I have signed up and plan to run the full Twin Cities Marathon this October.