31 For 21: 96 Hours and a Sneaky Baby

Who do I talk to about changing the days to have 96 hours instead of 24?  I have far too much to do and 24 hours just isn't cutting it anymore.  Taking care of Kennedy is a full time job in itself.  Then there's my "other job" which requires about 10 hours a week.  Fortunately I can do this job from home and it's VERY flexible.  And that boss even understands that things come up, and babies get sick.  Then throw in cooking and cleaning.  And then any other random responsibilities and commitments.  Hair bow orders, doctor appointments, and grocery shopping just to name a few.  Then mix in a few unknowns that are sure to come up during the week.  Like a sick mama and baby or having to deal with some "crisis" related to Early Intervention.  This week pretty much all of those scenarios have happened, and then some.  The house looks like a hurricane came through, and my list of things to do is about two miles longer than it was at the beginning of the week.  But today, I put everything aside and spent the day snuggling my little monkey and bringing her back to health.  I'm happy to report *knock on wood* that it appears her stuffy nose is headed out as quickly as it showed up.  By the time she went to bed tonight, she was full of smiles and giggles, playing with her toys, and fighting her sleep. 

Speaking of the little monkey.  Last night Kennedy ended up sleeping on her belly.  Of course, she spent the first several hours up and down with the annoying stuffy nose.  It was a nice excuse for me to lay in bed from 8pm on.  Around midnight, she popped herself up on her arms (still asleep).  Then got up on her knees.  In her sleep.  Three or four times.  Wiggling herself around the bed.  Excuse me?  This is the same kid who screams bloody murder during therapy when it's time to get on her knees.  So, I'm even more convinced now.  She CAN do it, she just chooses not to.  She's managed to maneuver around more and more, and I fear that my days of leaving her in one place are coming to an end.  Today, I left her sitting in the middle of the bed to play with Porky, while I made up some bottles.  I came back a few minutes later to an apparently VERY sleepy baby.  In a completely different position than I left her.  And who says that she can't move from one position to the next on her own?  And have I mentioned how much she loves Porky?

Disclaimer: She really could breathe, though this picture is deceptive!

Growing Up

I love being a mom.  I love staying home, and spending every day with my little diva.  I love seeing her do things for the first time, and knowing that I helped teacher her many of those things.  I am so proud of her for everything she has accomplished, and that even when she gets frustrated, she doesn't give up.  It's bittersweet to see her growing up so fast.  Of course, you want them to stay babies forever, but at the same time it is so much fun seeing her explore and try new things.  Her personality comes out more and more, and is demonstrated in the things she does and her expressions.  And her raspberries.  Loves the raspberries.  I'm so lucky to have a wonderful husband that works hard so I am able to stay home and enjoy this time with Kennedy.  I wouldn't go back to work, even if it was for a million dollars.  Of course you have to make sacrifices, but they are all worth it.  You never get a re-do of these times in life.

Since we can't work on tummy time, our EIT has us working on things like sitting.  We're struggling with that one a little because of her short arms (a characteristic of children with Down syndrome) so she is unable to reach the floor to sit in a supported sit.  When I put a pillow in front of her, she can sit for a few seconds, before toppling over.  We're also working on building her strength in other areas.  Some of my favorite days are spent at home playing with toys and working on Kennedy's "exercises" which I try to turn into more fun than work! 

It seems like just yesterday she was holding a toy for the first time, and now she's turning pages in a book.  Next it will be Shakespeare. 

 Ready for dinner!!!  She seems to love her peas!

Not only does she love her peas, she loves doing raspberries while eating her peas.  Grandma was here for dinner time and was fortunate to capture it on video.

 

Home Sweet Home!

I've never been so happy to be home in my life.  At first I was thinking the only time that could compare was when we were released from the NICU.  But my husband pointed out that even then we had a cloud over our heads because we knew in a few months we would have to go through open heart surgery.  He's right.  Even though we were completely thrilled to be home with her, we knew we were facing something 20 times harder.  Not that we won't have challenges to come, but I'm pretty sure that anything else will be easier than this was.

We were discharged this morning.  Her echo report showed her heart is functioning normally, with a very minimal amount of leakage around the valves.  That is common at this point and the valves should seal on their own.  Even if they don't, it's not a cause for concern.  They said that they have no reason to think that she will ever need another heart surgery.  Her pulse ox is averaging 100% on room air.  She's eating over 30 ounces of milk a day.  She's not falling asleep like she was.  She's breathing a whole lot easier.  She is temporarily on Lasix and Vasotec, which will both be weaned over the next few weeks by our cardiologist.  Lasix is very common after heart surgery, and they are using the Vasotec to keep her blood pressure lower than average in order to allow the heart to adjust to all the changes.  Soon Kennedy will be medication free! 

I have never felt a bigger sense of relief.  We have made it past the biggest hurdle in our lives, to date.  I would never admit it before surgery, but I was scared to death of losing her, and being able to walk through the doors to our home with a happy and healthy baby girl was the best feeling ever.  I'm pretty sure my husband would agree with me there.

I want to thank everyone from the bottom of our hearts for all of the thoughts and prayers for Kennedy and our family over the past two weeks.  And a special thank you to everyone who spent those extremely LONG four hours with us that she was in surgery.  And for everyone who provided care packages for Marlon and I, and toys and gifts for Kennedy.  Your support and prayers mean the world and we cannot thank you enough.

With that said, Kennedy is thrilled to be home.  We got home, and she played with her friends on the play mat.  She was kicking her feet and holding her purse the whole time!  She was making faces at her snail and on the mirror.  She loved seeing the sheep in her swing, while I unpacked.  After milk and a lot of fun, Kennedy and I curled up in bed for a two hour nap!  How perfect?!  Now we're all snuggled up in bed, and I've never appreciated co-sleeping more than I do right now.

A Stay at Home Mom's Confession

What's the hardest part of being a stay at home mom?

It's hard balancing the household responsibilities while taking care of a baby.  Not to mention, a baby that spends most of the day awake and requiring attention.  Let's not forget about feeding, pumping, washing bottles, etc.  How do you balance all of this while keeping the house clean and cooking meals?  My postpartum doula has been a life saver.  (Angie, I can never thank you enough.)  But sadly, this was her last week (for now) - and I'm on my own after this.  (Mom - what days are you off again?)

Let's not forget about the doctor's appointments and miscellaneous errands.  And grocery shopping.  Kennedy either hates Publix or hates grocery shopping.  I'm not sure which, or maybe both.  But it never fails, the second we get in the store, she's awake and being "that baby."  You know, the one you can hear all over the store.   This leads to trouble in the kitchen when it comes to cooking.  Of course, Angie never had a problem throwing something together, but I just don't have that kind of domestic ability (yet.) 

Then there is the fact that eventually you start to feel like you're living amidst a very one sided conversation.  I'm not ready for Kennedy to grow up, but how cool will it be when I have someone that can answer me back.  I try to get out of the house every day, even if it's just for a walk.  I'm thankful for the Mom's Group at my birth center.  It's so nice to interact with other moms.

But oddly enough, none of this is the hardest part of staying home.  Here is my confession.

My name is Jennifer, and I am a shopaholic.  I could play dress up all day long with Kennedy.  I am addicted to cute baby girl clothes, and it is REALLY hard not to go shopping all day every day.  I'm trying not to spoil her, but I seem to go out of control.  So how am I supposed to be home all day with Kennedy and not hit the mall?  Today's shopping trip ended with some new toys, a Baby Einstein set, a bathing suit, a new dress (or three), and some other truly adorable clothes that I just could NOT resist.  If you've seen Kennedy's closet, or dresser(s) - you know that she's not lacking at all in the clothes department.   And then of course, the bows and headbands.  I could go on and on, but the truth is, I'm a shopaholic, and I really need to find a solution to prevent me from shopping all the time!

Warning:  Lots of pictures of Kennedy in adorable dresses (and clothes in general) to come.