Last Official Apt at Childrens

We had our last apt at Childrens on Friday afternoon.  Echo of Jackson's heart, followed by a meeting with the cardiologist and then a big team meeting.  The echo was pretty uneventful.  Dr. Adel came in and took some more pictures of things.  Now that Jackson is so far along, it gets hard to see his heart through his chest bones.  But he got some "pretty pictures" as he called them.  He told us that nothing substantial had changed, which was good.  He feels the pulmonary artery and the aorta are both continuing to grow and develop, which is good.  While he won't commit to anything, he feels pretty confident that once Jackson is born, he will do a pretty decent job of holding his own.  Since he has Double Outlet Right Ventricle, his heart will mix some oxygenated blood in with the non oxygenated blood.  Which is good.  He said it could buy us as much as 6 weeks before he needs the surgery to place a band around his pulmonary artery.  He's hoping we will both be discharged on Sunday, the 14th.  WOW!!  That is awesome news!  Unless of course you are my parents, who have put in vacation time, and bought plane tickets, to be here through mid November.  Then it's maybe not such good news, knowing they will have to instead go home in between for a while and then come back so they can be here when the surgery does take place.  But, that's a bridge for another day.

We wandered up to the ever elusive 9th floor (where you go when you are out of the heart ICU but not ready to go home) and met a new heart family.  Lindsay and her husband David and their heart warrior son, Avery.  Lindsay and I hooked up this summer.  While in church one Sunday, someone passed a prayer card forward asking us to pray for her niece, who had a baby who only had half a heart.  Needless to say, that very afternoon I was emailing the aunt to get in touch with her niece!!  Her son recently had his 2nd surgery.  The surgery itself went fine, but he's having some other complications.  I am hoping she is not still there when I deliver in 1 1/2 weeks. 

Tonight, Chris and I are sneaking away for the night.  Our 6 year wedding anniversary is a few days before Jackson gets here.  A friend is coming to stay with Mason for the afternoon, and evening.  I've never spent a night away from Mason.  Lord help me!  I know this will be harder on him than me, for sure.  He and Aunt Erika are going to have a blast.  She's so good with kids.  Looking forward to a little romantic time with my husband before we embark on the roller coaster ride of our lives.

Birthday Party

 

Just a few pics from the party this weekend.

Happy 3rd Birthday My Beautiful Son

Today Mason turned 3 years old.  We celebrated with phone calls from Grandma Donna, presents, and dinner at Buffalo Wild Wings for some chicken nuggets and french fries.  And of course, a slice of chocolate cake and ice cream, cause dad just had to tell the waiter it was Mason's birthday.  I really don't know who is the bigger chocoholic . . . . but I think it just might be Mason.  And if you know Chris, that really should scare you!!

I can't imagine my life without Mason.  When I think back to the days of not wanting kids, I can't believe I ever felt that way.  My world spins around that boy, he is the center of my universe.  And I would be lost without him.

I love you Mason Allen, so much more than you'll ever know.  HAPPY BIRTHDAY!  xoxo

Confession

The associate pastor at my church has 3 boys.  1 older son, and then twin boys.  From what I've been told, somewhere around 25 weeks she started to have a leak in her amniotic sack, that went undetected.  And once they realized it, it was too late.  Damage had been done.  Josh, one of the twins, suffered serious brain damage.  He is in a wheel chair and has some cerebral palsy type issues.  He will never live an independent life.  When they are gone, he will have to be placed in a nursing home.  It breaks my heart to see him every Sunday.  I have always secretly wished she wasn't there, with her sons.  They made me feel guilty for having a healthy child.  I wished that she would leave the church and never come back.

When I found out I was pregnant with Jackson, one day sitting in the pews, I looked at Josh, and then I looked towards the sky, and said to god "don't you do that to me".  I can't help but sometimes wonder if he's punishing Jackson for what I said.  It was horrible and selfish and I wish I could take it back.  But I can't.  I pushed god, and I think god pushed back.

I found my way to a "heart momma" chat board.  It's full of moms and dads with heart babies.  Some sever, like Jackson's.  Some less sever, but scary just the same.  And when it's a good day or week on the board, I am filled with a sense of peace and comfort and I think "we can do this".  But then when it's bad, it's awful.  In the 3 months I've been there, 4 babies have lost their fight.  We just lost another last night.  And when that happens to these poor families, all I can do is think about Jackson and worry and cry and hate this shitty situation for all that it is.  And all that I can not control.

We are 3 weeks out from his birth, and the closer it gets, the more I start to loose my grasp on staying positive.

There are some local Denver heart families, and we are getting together this weekend.  I don't think it could come at a better time, for me, to be surrounded by their kids who are living and thriving.  I need to see that there is hope and there is promise and there is a future.  And it can include Jackson.

Heart Baby Prayer #2

WELCOME TO HOLLAND

by Emily Perl Kingsley

 

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Heart Baby Prayer

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared.


"Will I be okay with only half of my heart?" Jesus replies, "of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart. Enjoy your time with family, play and laugh every day, and when it's time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."