Doing It Again

Kennedy has once again set out to prove people wrong.  They warned us before starting solids that Kennedy would likely have a hard time with it, because babies with Down syndrome don't usually "get" the whole eating thing.  They don't understand the opening their mouths, what to do with their tongue, and how to swallow.  So I went into it pretty optimistic, but didn't have high hopes that it would work out well.  Well, Kennedy has once again proved them wrong.  She's rocking the solids!  We have now worked through carrots, peas, sweet potatoes and are on to apples.  So far everything I have made has been a success, except the apples.  They came out terrible, so we're relying on Gerber for the time being. 

She LOVES to eat.  She clearly takes after her mommy and daddy.  She opens her mouth for more, she has a pretty good handle on what to do with the spoon, and can get the food off the spoon, and swallowed.  Every now and then she's not sure what to do with her tongue and it pokes out, along with a little food.  But she doesn't even get very messy.  Any residual food usually comes from blowing raspberries with a mouth full of food!  And ladies and gentleman.  Last night, for the very first time, Kennedy actually banged on her hand on the high chair try because I wasn't heating up the next round of food fast enough.  Yes, I said the next round.  She ate an entire 2.5 ounces of sweet potatoes last night, in just one sitting.  I was standing in the kitchen warming them up and talking to Marlon.  Clearly I wasn't moving fast enough for her and she was going to let me know! By the way, she's now eating about 2 ounces of fruit for breakfast and 2 ounces of vegetables for dinner!!!  And still maintaining the 30 ounces of breast milk a day!  Way to go Kennedy! 

The following pictures were from her first taste of apples! 

Oooohhh....what did you make now mom?

Bring it on!!  I'm hungry!

YUM!  I'm going to lick this off my lips!

We're also working on things like sitting up - since we can't do tummy time.  Of course, we have a long way to go, and since Kennedy has short arms, even the tripod sit is hard.  So we use pillows.  And we practice on the bed.  Where we can't get hurt when we topple over.  Here's some photos of how we're doing.

Sometimes we eat our hands while we sit....

Sometimes we sit really well and smile for mommy!

And sometimes we fall face first.  Exhibit A of why this is done on the bed.

Adventures From the Kitchen

I've been talking about making Kennedy's baby food for quite awhile, but wasn't really prepared since we started her a lot sooner than we expected  I also wanted to make sure she was going to go for the puree concept before I invested in anything.  For those of you that know how much I LOVE to cook, I'm sure you're all laughing right now.  (By the way - I really am getting better about cooking, I've got a few new hit dishes that my husband seems to love.  Or maybe he's just being nice.)

My mother in law ordered us a Baby Bullet last week, and it finally arrived yesterday!  I was so excited to get to work on my first creation.  It was perfect timing, since Kennedy had four days of peas already, she was due to move on.  I went to Publix and picked up an organic sweet potato.  Not only is making baby food a lot healthier, it's a lot more cost effective.  One potato can get you about 10 servings of sweet potatoes for about the same price as one package of Gerber sweet potatoes.  It's even better of a deal when the cashier rings it up as a "baking potato," therefore saving you about $1.99/lb.

I figured this couldn't be THAT hard.  After all, it's just a potato.  Of course, I ran into problems as soon as I cut into the potato.  Have you ever seen a white sweet potato?  I was incredibly confused, and spent 30 minutes trying to find out from other people, and Google what the heck a white sweet potato was?  Turns out most sweet potatoes are white.  Those orange things that you make casserole and pies out of at Thanksgiving are actually yams, despite the fact that they are often referred to as sweet potatoes.  Once I knew it was actually safe to feed Kennedy is this potato, I cut it into cubes and steamed it the microwave for 3 minutes.

Into the Baby Bullet it went.

Mixed with a cup of breast milk, and pureed for a few seconds, we had sweet potatoes suitable for my little monkey!  One potato for $1.09 gave us 10 servings of 1.5 ounces each.

 

Sweet potatoes were a huge hit in our house.  I think it's safe to say that it's Kennedy's new favorite!  Could this smile get any bigger???

I will say, I'm not sure if it was the sweet potatoes or if Kennedy has hit a new high with her energy level, but she was WIRED last night!  After barely napping all day, it was 9:30 and she was still kicking her feet, arms flying every direction, giggling and playing!  I don't mind if she's awake and happy, but I have to tell you, it was pretty funny.  It wasn't so funny at 4am when she woke up full of energy though.  I can't complain though, overall she's a great sleeper!  

I still find it hard to believe she's well on her way to being 6 months old, that we've gotten through so much in those few months!

Throwing in the Towel

This is a post I never thought I would write.  After trying to get Kennedy to transition back to breastfeeding, I just don't see it happening.  I didn't expect it to happen over night, but it seems to be getting worse and worse.  She literally screams, kicks her feet and her arms are flying every which way.  She has ZERO interest in breastfeeding.  I have tried and tried.  I've done everything I can think of and have even brought back my postpartum doula, Angie, to help.  I've contacted a lactation consultant from 1400 miles away, who specializes in children with special needs.  We're all out of ideas.

This is so hard for me.  I always planned on breastfeeding.  I know that she's getting my milk, and that's ultimately what is most important.  But there are so many other benefits to the actual act of breastfeeding, especially for a baby with Down syndrome.  But I can't force her.  In talking with someone today, I realized that I just need to be happy that we have gotten as far as we have.  I was fortunate to have an amazing natural childbirth, I was fortunate to be able to breastfeed at least part of the time for the first 3 months, I'm fortunate to have a very generous milk supply.  Most of all, I'm fortunate to have such an amazing and strong baby girl who has overcome so many struggles.  I never in a million years thought I would see myself saying this, but really....in the grand scheme of things, breastfeeding isn't such a big deal.  Kennedy and I have a great bond.  She's still getting my milk.  As much as pumping it a real pain in the butt, it's not the end of the world.  I'm already 5 months into it, and I have 3 months worth of milk frozen.  Unfortunately that also means that my deep freezer is full.  I have absolutely no idea what we're going to do now.  We cannot possibly buy another deep freezer.  We just bought the first one in May.  (So if anyone is local and happens to know of someone selling a deep freezer, please let me know.  I'm not sure that I trust Craigslist.) 

With that said, I'm officially throwing in the towel.  I'm not usually one to give up.  I definitely don't give up with out a fight.  But Kennedy has been through so much in 5 short months.  If she wants a bottle, it's not the end of the world.  I want her to get breast milk for at least one year.  In a few months, I'll be able to stop pumping, or at least significantly reduce how often I pump, and still have enough frozen milk to get her to her first birthday, at least.  Most importantly I have a happy and healthy baby.  Does this photo say otherwise?

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.

 

Enjoying the Other Side

Yesterday was Kennedy's first post-op appointment with her Cardiologist.  I used to dread these appointments.  I was always expecting some bomb to drop, or for an argument about her weight.  Yesterday was different.  Of course, I was worried that something would be wrong, but over all I had a sense of relief going to the appointment.  The last several times that I've been to the office, there were lots of tears and anxiety.

The appointment went really well!  Kennedy is up to 12lbs 10oz.  She sucked down a six ounce bottle in about 15 minutes when we got there.  The nurse could not believe the way she was eating!  She fell asleep and the sonographer got her echo done in no time.  She took another 5 ounce bottle after her Echo!  Dr. Nardell couldn't believe how well she was eating!  Her echo looked even better than the one done at discharge.  There is still a slight amount of leakage around one of the valves, but it is even less than last week and to be expected at this point.  We are weaning her off of Lasix, and will be able to stop it completely in 2 weeks.  She'll remain on Enalapril until our next appointment in one month, then we will begin to wean her from that too.  Unfortunately for us, that's when Dr. Nardell goes on maternity leave, so we'll have to see one of her partners while she's out.  We have 3.5 weeks until we can resume tummy time and lifting her under her arm.  Her incision from the actualy surgery is healing beautifully.  We have a little more time on the healing from the chest tube though.  As she explained to us, they use a lot of care and precision for the main incision but when it comes to inserting the chest tube they aren't as precise, and they just leave it to heal on it's own.  So it takes longer and looks worse. Once that heals a little more, we can resume regular baths and SWIMMING!!!! 

We also got the okay to transition her back to exclusively breastfeeding!  This is going to be a huge task to take on, but I'm determined and I'll do whatever I can to make it work.  My postpartum doula and friend, Angie, is coming back to help Monday!  I've been making attempts, and while it hasn't been a complete disaster, it's also not going great.  She loves to use me as her personal teether, rather than eating...OUCH!

It feels so good to be on the other side of surgery.  The worry and anticipation are gone and we can truly enjoy life with our beautiful princess.  We are eagerly planning Kennedy's first big vacation, and are eager for her out of town family, and especially her Great Grandparents, to meet her for the first time.  If anyone knows of somewhere that we can rent an affordable 18 wheeler or motor home to pack with all of our stuff, please let me know.

I'll leave you with some of Kennedy's new favorite thing to do.  Blowing raspberries!  She does it all the time.  When she's happy, when she's mad, when she taking medicine and when she's eating her carrots!  Yesterday she did it to Dr. Nardell!  The video was this morning in bed. 

A Little More Every Day

Five months ago Down syndrome seemed like the center of my universe.  And it occurred to me yesterday, that I hardly write about it anymore.  Marlon and I decided from day one that we would not let it run our lives, and that it would never be about what Kennedy couldn't do, but what she COULD do.  And let me tell you, she's sure showing us everything she is capable of.  Not only has she shown great progress in meeting her milestones so far, but two weeks after surgery she's continuing to do so well, despite the limitations. 

For many people it's like a contenst, to see whose baby starts doing what when and whose baby is bigger than whose.  In the long run, does it really matter who is sitting up first?  Was that on the last job application you completed?  No - Kennedy isn't rolling from back to front, and no, she's not sitting up.  But she is giving us kisses, blowing raspberries, sitting with support, playing with toys, eating pureed carrots, and most of all, she's making awesome progress in her recovery from open heart surgery.  All of this competition and the shocking remarks that she's not sitting yet make me want to say, "When did your baby do THAT?"  But I'm not that kind of person.  Sometimes I wish I was. 

Kennedy has to work a lot harder to do things that "typical" babies do with out even thinking about it.  That makes every thing she does even more of an accomplishment.  I don't take anything for granted.  Every milestone, no matter how small it is, is cause for celebration.  The fact that she grabbed onto the book while I was reading to her the other day is a big deal, while many people wouldn't think of the significance of that.  Each day we learn a little something new, or make progress with something we've been practicing.  My mom and I went shopping yesterday (imagine that) and scoured the aisles of Toys R Us for some new toys for Kennedy.  Keeping her busy since surgery has been a real challenge, so we're constantly trying to introduce new things until we can return to our normal activities.  Buying toys is a science for us.  I know that Kennedy won't necessarily use them for what they are intended at the age it indicates.  But for us, it's a matter of finding things that can help her develop certain skills.  We have to find new ways of using some of the toys, before we can really use them as intended.  And even some of the more straight forward toys, it takes patience and teaching for her to understand what to do with them.  Yesterday we taught her how to play the piano.  We also sat and played with bubbles.  Okay, okay.  I blew bubbles and she got excited to see them floating by, then popping when she poked it with her fingers.  We also made our second attempt with carrots yesterday.  She seems to like them more and more with each attempt.  And she's definitely starting to get the concept down.  After a few bites she was opening her mouth every time the spoon came towards her.  She ate half the container!  And followed it with 4 ounces of milk.  These are the moments I live for as a mom. 

Learning to play the piano!

Yummy mom!  More carrots. Now I'm going to do raspberries and get them in your face!

Happy 5 Months!

I cannot believe that our little girl is five months old today.  Seriously, where has the time gone?  She's turning into a little girl, and we're two weeks post open heart surgery.  She is doing wonderful.  I can't ask for anything more.

What an exciting day it was.  We had an appointment with our pediatrician today.  They wanted us to see her just as a follow up after surgery.  I'm so excited to say that she gained 8 ounces since we've been home, and that's just with straight breast milk!  She's been eating 32-35 ounces a day, and you would still sometimes think we're starving her.  The pediatrician suggested that we could start solids when we were ready.  Seriously, back to that turning into a little girl thing.  I can't believe we're already at this point in our lives!  Her expressions and personality are coming out more and more every day.  She laughs, smiles, pouts, and gives baby kisses.  She makes some really adorable faces too.  She is definitely a mommy's girl these days!  She loves her daddy, but it's pretty much a given that by late evening, she only wants her mommy.  Her current favorite toy is her purse.  Though she loves pretty much anything she can get in her mouth.  And of course things that have bright lights and play music.  She also LOVES her feet.  She's constantly kicking her legs up in the air, pulling at her feet, and putting them in her mouth.  It's so cute!  I'm sure we will both be relieved when we can resume our normal activities.  Kennedy and I are both getting bored at home alllll the time, and not being able to use most of her big toys! 

Playing with her baby feet!!!!

The glasses are still a little too big!

We also decided to go ahead and give Kennedy her first taste of solids tonight.  My plan is to make her food, but I wanted to make sure she was actually interested before I got into all the preparation.  It was funny and interesting to say the least!  We gave her carrots.  I don't think she loved them, but I also don't think she hated them.  We'll continue to try, until she gets it.  I'm going to give her carrots for a few days, and then move onto something more fun like avocado!  

What the heck is about to happen mom?  What's the orange stuff in that bowl?

MOM!  What the heck is THAT? And why am I eating it?

I don't know mom, are you sure I'm supposed to eat this?

Have you ever tasted this stuff???

Mom, I really don't know about this.  Have anything ele?

Life After Surgery

People weren't lying when they said it's like having a newborn again.  It doesn't help that Kennedy seems to be teething now!  Poor baby, just can't catch a break.  The first few days home, Kennedy was seriously off schedule.  Random naps, late bedtimes, erratic feeding schedules, but always lots of snuggles with mama.  She's still a little off track, which is why I was just putting her to bed at midnight tonight.  Bath time is HARD.  I hate having to wash her incision, and the area where the central line and chest tube were.  She hates me peeling the tape and bandaids off, and I hate it just as much.  She's also eating about 32 ounces of milk a day.  I'm so thankful for the milk supply that I have.  Despite her increase, I'm still able to freeze about 30 ounces a day.  Kennedy is full of energy these days, and full of personality, more than ever!  It's hard to believe that just two weeks ago we were preparing for Kennedy's surgery, and now we are planning our upcoming vacations.  For months before her surgery I was relying on what other people could tell me to prepare for her surgery.  It was all so incredibly helpful.  One of the reasons I have this blog is for other people in our situation to see what we've experienced.  I'll be creating a section of the blog that discusses our experience with Kennedy's open heart surgery.  I hope that other people can learn from our experiences.  It feels good to be on the other side, and be the one giving advice...FINALLY!

Holding onto her purse for dear life.  It was the only thing amusing her while we ate.

Kisses From Kennedy!!!!

No matter how much we used Pinky in the hospital, she still isn't over him!

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.