Monday, May 2, 2011

10 Weeks and a New Discovery

It's hard to believe that Kennedy is 10 weeks old already.  It's even harder to believe that we're facing open heart surgery in about 6 weeks.  Each day that passes, I get more and more terrified and anxious about it.  I'm dreading the day that we have to go to the hospital.  I'm dreading the moment that they take her to the OR.  The four hours that she's in surgery will be the longest of my life.  I have no intention of leaving her side once she's out of surgery.  Yes, I will be camped in my daughter's room for as long as we are there.

I don't expect people to know what I'm going through, except the one or two people I've actually spoken with who have been where I am.  That was until this weekend.  I'm not sure how I hadn't come across it before, but I found a message board that actually has a group for parents of children with Down Syndrome.  And one for heart conditions.  These people truly understand.  They've been where I am.  They can relate and they can give me advice.  I can learn from them.  In fact, I've already learned that all the feelings and emotions I've been going through really are normal, and I'm not the first person to feel this way.

I've also learned something really important.  There are A LOT of people who have a child that is not diagnosed with Down Syndrome until after they were born.  This is something I've struggled with from day one.  That very day, the Neonatologist in the NICU made the assumption that I did not have prenatal care.  And most recently there was the pediatrician that was shocked that we didn't know ahead of time.  I've been made to feel like I'm the only person on the planet who didn't know that she was having a baby with Down Syndrome or a heart defect.  I hear it ALL the time.  Now, I've met other women who have been in my shoes, and have dealt with the shock that I have.  I'm NOT the only one.  Why do so many people act like I am?  All others aside, the medical community shocks me the most.  I wouldn't expect Joe Smith down the street to realize that it happens so often, but I would expect the medical community not to appear so shocked and judgmental that I was unaware.

I've even met women from my area, that have been where I am today.  I've gotten an excellent recommendation for a pediatrician that sounds like a perfect match for our needs.  How did I not know that this community existed before?  I'm like the queen of Google, HOW did I miss this?  I guess it could have something to do with my limited time for searching the Internet for the past 10 weeks.

I will admit, ten weeks ago, I felt like our world was crashing down around us.  It's gotten easier, but it still has its challenges, and I'm sure that will never completely go away.  Hearing other peoples stories have made me realize how truly blessed I am.  Kennedy is very healthy with the exception of her heart defect.  Although the 5 day NICU stay felt like the end of the world, it could have been MUCH worse.  I already knew that I have an amazing daughter, but hearing other people's experiences has shown me how fortunate we are.  I had no idea that so many babies with Down Syndrome are born prematurely.  That makes it feel even better that I gave birth at 39 weeks 4 days.  

I wish I had found this group earlier.  I really think it could have made all the difference in the world over the first few weeks.  But, no looking back, only ahead.  I'll take their words of wisdom and advice to get me through this.  And some day, I'll be the one offering the support to someone else.

That said, I'll share some of Kennedy's cuteness from this weekend.  Of course, I've got 200 pictures that are still sitting on my camera, so my iPhone pictures will have to do for tonight.

Daddy saying goodnight to his baby girl.  (By the way, after weeks of going to bed at 10pm, this was taken at midnight and she was still wide awake.)

I promise, I did NOT pose my child this way.  I took this picture from above, while she was laying on the ottoman.  


  1. I am so happy that you have found a place that you can connect. You know I am always here if you need someone to talk to, but its hard for me or anyone else to give advice when we truly don't know what you are going through. Kennedy is so lucky to have such a wonderful & loving Mom & Dad!

  2. She's so cute! Glad you found our group, you're right it really is encouraging. I'm sorry you have had to deal with the judgmentalism (is that a word?)of the medical community! I'm glad you seem to have found a pediatrician.

  3. This is exactly what you've been looking for - people who can really give you the advice you need! I'm so happy for you that you were able to find a good team to talk things through with - and the news on the pediatrician is super encouraging! So glad things are getting a little better on that front!!
    Love ya, Aunt M

  4. wish i had known about that group when we were going through it! Glad you have a good support system. I have been in awe with how well Kennedy has been doing. She is so much more active and gaining weight so much better then Fiona ever did. I do have to say, I am a little surprised they want to do the surgery sooner then later, because they wanted to wait as long as possible with Fiona. But its all probably circumstantial... Fiona really wasn't gaining weight, and they wanted her to be ten lbs which Kennedy is already close to if not at already.

  5. Jen I am so glad you found this support group and am really hoping that this pediatrician works out. I'm really shocked at what you have said about doctors; I would have never thought but then again there are a lot of things I would have never thought. I love Kennedy's faces, she is so expressive. Keep the pictures coming :)