Thursday, December 13, 2007

Katie first

The great Hospital Tour of 2007 continues....

Tuesday we went to our third hospital since the babies were born, Newark Beth Israel, for Katie's appointment about her heart. The doctor confirmed what the first doctor said, that she has Pulmonary Valve Stenosis... but wait, there's more!! It's more complicated than that because the walls of the valve behind the closed flap are thicker than they should be, so while the balloon catheterization will pop open the flap, it won't really help the thick walls. Which means, she might need open heart surgery where they put some kind of mesh or something over the walls, and then eventually have the valve replaced... Oh and of course she still has the HUGE PDA that also needs to be closed.

Do you ever have a moment that just feels completely surreal? You almost are floating above yourself, lookng down thinking, look at that poor sucker? I had one of those when the doctor was explaining it all to us. When did my life become an episode of Grey's Anatomy, minus all the hot doctors? Where the doctor takes you into a little room, closes the door and puts on a very serious face... tells you news you know you don't want to hear, and they don't want to tell you.

What we need to focus on is that at least it is fixable. And Katie is right now, a healthy growing baby - that morning the girls had their 2 month ped visit and the doctor said they looked great - Katie is 8lbs 13oz, Charlotte is 8lbs 3oz, both exactly 5 pounds over their birth weight. She's not sick, not losing weight, having trouble breathing or turning blue. So the doctor wants to wait a month and see how the PDA develops, if it gets bigger or smaller before they do the balloon catheterization so they can bo both the PVS and PDA at once. There's about a 40% chance that will be good enough, and the balloon will push the thick walls of the valve open a little also and she won't need anything else done right now. If not, then they have to do the open heart surgery. I'm pretty sure the way things are going, she'll be in the 60% that needs surgery.

My Katie, she is the sweetest baby. I don't talk about the girls as much as I should, but really, they are angels. Charlotte is the charmer, she wraps everyone around her little finger, she has such a funny personality and this sweet heart shaped face. Katie is the mush - she is a chubby, happy baby. She smiles and smiles, snuggles into your shoulder, has the most easy going personality. She's the baby you dream about having, the one you wish for when you're little, who loves to be held, to sleep in your arms, the one who lets you try 10 different outifts on her and just smiles while you struggle to get the undershirt over her head.

It is hard to think she's not as perfect inside as she is on the outside. I hate the thought of her going through all this but I know she'll handle it like she does everything, with her little smile and sweet disposition. It's killing me though that this is happening to her. And it's terrifying.

I have to write up about Jack - that's a whole other long explanation I will try and get to later. I'll say the news wasn't terrible or great, just typical Jack what the hell is going on with this kid news. Katie deserves her own entry though.

Oh and the pediatrician just called..... the girls got the recalled vaccine on Tuesday..... I said, of course they did. I actually laughed. What's next God? LOCUSTS?? Bring it on!!

34 comments:

Anonymous said...

Hi! I just wanted to say hell and let you know that I have been praying for your family!!!
I have an 8 year old daughter with Tetralogy of Fallot (heart disease). She has gone through two open heart surgeries and an angioplasty so far...will be having another surgery next month.
She also has left pulmonary artery stenosis. (along with a slew of other things...grrrr.)
I think of your blog regularly and say a prayer for your babies every day!

Take Care~!

Sincerely,
Amy
ames143@hotmail.com

Liz said...

I've been thinking about you all so much. I am praying for Katie & Jack & for your whole family. I'm here if you need anything at all.
xoxo
Liz

Melissa said...

hang in there Meg...

Anonymous said...

Oops....just wanted to say HELLO! Not the other thing!

EEK!

-Amy

Anonymous said...

Megan, It's nice to hear that you're enjoying your little girls, they are beautiful and seem so sweet. I hope Katie doesn't have to have surgery to fix her problem and things turn out better than you expect.
You are all in my prayers every day! take care, Elizabeth(mrs.hj)

Adrienne said...

Megan, you have all been on my mind and in my prayers. I'm glad to hear that Katie's condition is treatable. The girls are just beautiful!

amber said...

i'm still sending lots of prayers your way. you know, i'm a big believer in god only gives you as much as you can take... but i'm beginning to re-evaluate that position. i really hope that things start turning around for you guys; that katie falls into that 40%, that charlotte continues to be a charmer and that jack, well that jack is just a miracle baby and pulls through all of this.

lots of love to you and your whole family.

boobears said...

Megan- you continue to amaze me!
I continue praying for you all and here's to praying for no open heart surgery. It's great they are giving it some more time and not suggesting to do it now!
KEEP FIGHTING JACK!!!!
Love and Hugs to ALL!

Anonymous said...

Megan,
You are all in our prayers and thoughts. I love the new pictures of the girls. They are getting so big. Glad that Katie's condition is treatable. Stay strong.

nicole(mikeandnicole05)

Anonymous said...

Jack, Katie and Charlotte are in my Prayers!

Anonymous said...

Megan,
You are so amazingly strong! I am continuing the prayers for all of your little ones and hope that Jack and Katie get better soon!

natalie042205

Anonymous said...

You have been on my mind, and of course in my thoughts and prayers.

I always include you, PJ, Charlotte, Katie & Jack in my prayers.

Michelle

Anonymous said...

Keep that sense of humor, Megan. One day all three of your kids will groan when you make jokes, but they will know what a wonderful, loving mom they have!!

Marie said...

awww darling.....you poor thing. if its not x its y....im sorry. You have an amazing perspective on things though. Your family are always in my thoughts!

Marie
Mrs.Marie G

Anonymous said...

Meg ~ I have been thinking about you and your family so much, you have such an admirable strength that radiates from you. All of you are in my prayers.

Ali

Gillian said...

Megan,
Thank you for the update! I'm glad to hear Katie's condition is treatable, and she will be fine. Look at those weight numbers!! Awesome!! They look beautiful and oh, so happy..

Hang in there.. I've been thinking of you all and sending my continued vibes!

Anonymous said...

Still thinking and praying for your beautiful family. Your girls and Jack are such beautiful babies. What little chub-balls your girls are-sooooo sweet and cute!!!!!

Erica said...

Prayers will always be coming your way. I think positive vibes everyday for your little babies and for G-d to continue to give you the strength to deal with all of the ups and downs. When it rains, it pours, and i think the next nestie project should be to build you an Ark. May the Lord continue to watch over your family and to give the doctors the knowledge to fix all of the problems, and have your amazing Jack come home.

Erica (EricaD521)

mish2378 said...

Lucas and I think of your family often.

mish2378

cath said...

Locusts?????? yes dear - that and the Plague are coming your way next! damn no matter how horrible your situation is...and how hard i try to hold back the tears you always tend to make me smile with the way you write....

you should make this blog into a book... with the most Awesomest HAPPY ENDING EVER!!!!!

Cath&Tom

Jessica said...

Still sending thoughts your way... Hope tomorrow is a better day. And I really enjoyed the pictures of the kiddos!! They're the most precious elves EVER!!

coolbyproxy said...

Me and mine are sending good thoughts to you and yours :)

Anonymous said...

One of my dearest friend's son with born with the same thing. He ended up having value replace surgery. This year he started varisty basketball ball as a freshman at Oglethrope University. He also does wrestles during his off time.

I just know Katie will be fine. Hopefully the first surgery will work! We are praying for you guys.

Kimberly and the GA Guinn Trips
www.guinnfamilyhome.com

Anonymous said...

Megan,
I have been thinking of you and your family! We continue to pray for you all. I have the towns of WO, Scotch Plains and Clark praying!!
P.S - be on the lookout for some diapers! CJ is a too chubby these days for size 1!
Take Care!
Jessica
Dibsgirl

My name is Tammie said...

Still thinking of you all.

Anonymous said...

So glad to hear that Katie has a big chance of great recovery and keep enjoying them, they grow so fast. I'm praying for all of you.
Sandy

Anonymous said...

Megan- the slideshow was just adorable! Still sending your family tons of healthy vibes and prayers.

Ginny

Anonymous said...

Hi Megan! Someone posted about your blog and mentioned Jack. I have a godson named Jack so it caught my eye. I have been reading your blog and praying for your family ever since. Just take it one day at a time.

Anonymous said...

You and your family are amazing. You are all always in my prayers and I am hoping the very best!
Keep your head up, Megan. You have a lot of people talking to the heavens for you guys.


From a multiples and a south jersey mom

Sarah said...

Just remember that God doesn't give you more than you can handle! It may seem like he's really pushing his luck, but he knows that you and your family will be fine. Just believe.

The Nanny said...

I just found your blog through Asher and Jacob's Friends blog...and I spent a few hours re-reading all your entries. Wow. You've been through just so much...you're an amazing woman. I can't do much to help but I'm thinking about you guys and praying, praying, praying. I hope things get better for everyone.

-Nanny
theonlinenanny@gmail.com

Anonymous said...

Hey I just wanted to wish you well. I can't say I have experienced anything like this. My sister was born with a birth defect and they said she would 50/50 make it to 1 year then if she surpassed that she would live 5 years. She has lived a 14 years! She is very happy and full of life... So I guess what the doctors tell you is always the worst... My sister surpassed the odds.

I will keep all your babie in my prayers.

Lotta said...

When my son was born he had serious jaundice. Then he ended up having many, many febrile seizures. Turns out he was having "atypical" fever seizures. Which meant that EVERY time he got sick he would seize and then the fever would spike. We had to carry around a vial of sedative that we needed to shoot up his bum when he seized.

Then my husband came down with Guillane Barre syndrome (I'm sure I'm spelling it wrong) and was paralyzed from his knees down for about 3 months.

Sonofabitch. It was a hell of an introduction to the first two years of motherhood.

But now..the kids are awesome, husband is awesome and we're all stronger for having weathered it.

I know you all will get to the other side of this and be a closer family for it.

Take care!
Lotta

Adam said...

Wow. That is a lot to bare. I wish all of you big, healthy thoughts.

As a former double, heart valve replacement patient I can relate to some but not all of what you must be going through.

My prayers are with you.

All the best,

Adam
Heart Valve Surgery Website