A+

Kennedy had her 6 month well child visit today.  She weighed in at a whopping 14lbs 6oz.  That's nearly a 3 pound weight gain since surgery!  Dr. Perkins said she's doing great.  She was impressed with her muscle tone, especially just 7 weeks post-op.  We also had Early Intervention today.  Amanda, our EIT, also gave her an A+!  She couldn't believe how much Kennedy has changed over the past week and how much she's advanced.  Kennedy was all smiles for her, which is pretty rare.

Speaking of things being rare, it appears that we have a non-sleeper on our hands.  Everyone in my mom's group warned me about sleep regression, and apparently we've hit that point.  She got up from 3am-5am this morning.  Then again at 7am.  She went to bed around 9pm, after having a mere 45 minute nap all day.  Just to wake up shortly after 11pm.  It's now 1:46 and she's in her jumperoo, bouncing around, playing with her toys.  At least if I'm going to be up all night, she's happy.  But odd how this happens right before we're about to make the 13+ hour road trip north.  Our plans to drive all night while she sleeps may be out the window.  Well...the sleeping part at least.  I suspect daddy and I will alternate driving and entertaining the baby.

I have some pretty adorable pictures to share, but those will have to wait until tomorrow.  Or maybe in a few hours if she chooses not to sleep. 

Grow Baby Grow!

I'm thrilled to announce that Kennedy is weighing in at 13 pounds 6 ounces!!!!!  That's nearly a 2 pound gain in less than 3 weeks!  This is almost unbelievable.  If I hadn't seen the numbers on the scale myself, I would never have believed it. 

It's hard to believe that she's already almost 6 months old.  As much as I loved the newborn stage, where it was all snuggles - I REALLY love this age.  Every day Kennedy does something completely new and adorable.  She smiles and giggles more and more every day.  This afternoon we were laying on the bed, and I was giving her kisses.  She was "talking" to me and laughing!  She reached up and rub her hand on my face and just gave me the hugest smile.  It's moments like that which melt my heart.  Every day becomes more and more fun, especially now that heart surgery is behind us.  I can only imagine the memories that we'll make in the years to come. 

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?

What an Exciting Day! (And TONS of Kennedy's Cuteness)

Grandma came to visit today and what an exciting day we had.  Let me tell you - Kennedy is a trooper!  She put up with SO much today.  We started out the morning by working on a surprise for Father's Day.   Ssshhh...no one tell Daddy!  (And Marlon - if by any chance you actually do read this blog - CLOSE THIE WINDOW - NOW!)  We went and had some professional pictures done, to make a few Father's Day surprises for Daddy and Grandpa.  I was really nervous, based on how she reacts to the EI Therapist.  Well, she did fine.  Clearly she just hates the girl.  The pictures came out sooo adorable!!!  Here are just a few!  (By the time we got to the end - she was over it!  This was about a 90 minute photo session, so she did amazing.)

Can you tell she was over it by the last picture???  Now the hard part will be keeping it a secret until Sunday when we can show Daddy!

She was exhausted after our photos!  The poor baby slept through mommy and grandma having lunch.  We also had Kennedy's 4 month well baby visit.  Because surgery is on July 5th, I had to move our appointment up from next week.  This meant we had to see the nurse practitioner instead of the pediatrician we saw the first time.  Needless to say, I was incredibly nervous after all of the issues we've had thus far.  I'm happy to report - she was WONDERFUL!  Kennedy is in the 15% for height (23 inches) and the 10% for weight (11lbs 3oz).  This also puts her in the 50% for both on the Down syndrome growth charts.  They were thrilled with her growth and her development.  While she was being examined, she was kicking and rolling, had the paper on the table all torn apart.  She was grabbing at the stethoscope, and pulling at the nurses hand.  It was so cute!  She said it's way too soon for stranger anxiety.  Did I mention that Kennedy didn't have any issues with her OR the nurse?  Another example of her clearly hating the EIT.  She had to have 3 shots and the oral vaccine, in order to be caught up before surgery.  She didn't even flinch for the first two, and only cried for about 30 seconds with the third one.  I was so proud of her.  I will admit, that I was expecting extra snuggles tonight, but she's wanted to play and carry on just as normal - and she still is going strong for the night. 

She's Not THAT Small and Other Ramblings

So here we are at 3 1/2 months old, and weighing just over 10 1/2 pounds.  Some of Kennedy's friends that are her age weigh as much as 16 pounds.  Yes, I know my baby is small.  She's barely on the charts for an "average" baby, but she is in the 75th percentile for weight and length on the Down syndrome growth chart.  I have to admit, I'm really sick of hearing how small she is.  People constantly ask how old she is.  When I tell them they look at me in disbelief and they all say the same thing, "She's so small."  And then they just stare at us, as if I'm starving her or something.  I really have no interest in giving complete strangers a play by play on my daughter's heart condition, so I usually just let them think what they want.  I thought it was just me, but after being out and about for most of the weekend my husband said the same thing.  This is only one of the things that people say that drives us crazy.  We won't get in to the rest.

In more fun news, Kennedy is SO close to rolling onto her belly from her back.  She hates to be on her belly though, so I don't expect that it will happen anytime soon.  My shopping addiction has been all about the clothes since I found out that we were having a girl, but now she's finally starting to enjoy toys, so my priorities are shifting again.  We got her a Baby Einstein ball this weekend and she's doing really well holding it.  We also got her a monkey security blanket that she seems to love (maybe I should buy a few back ups now.)

  The elephant makes car rides bearable for mom and dad and fun for Kennedy!

"Daddy this elephant is sooo funny!"  (She was really thinking - if I keep daddy amused he won't realize how much mommy is spending on my new clothes.)

  

"Hey I finally figured out how mommy makes this thing talk!"

"Mommy where did you put Sophie?  Wait I see it - what's it doing down there?"

 Hi Mommy!!!

"Oh my gosh these friends are just sooo much fun!"

"Back away from my monkey!"

The Black Cloud Approaches

Kennedy's Cardiology appointment went really well this morning.  She weighed in at 10lbs 9oz, which they were very happy with.  She said she's doing wonderful.  We go back in two weeks, for the final echo before surgery.  We'll meet with the surgeon the week after that, and we're on target for surgery at the end of the month.  The doctor performing the surgery will be Dr. Quintessenza, whom I've heard amazing things about.  He's the head of the department at the children's hospital, so I know we are in good hands.   If all goes well, it's my goal that we will be home and on the road to recovery by my birthday.  What an awesome gift that would be. 

Once again, I had a meltdown at the appointment.  I'm absolutely terrified, and nothing can change that.  I don't care how amazing the surgeon is, and I don't care how many times they do this.  It's open heart surgery, and it's my baby - nothing can make me feel better about it.  In fact, I used to think that meeting with the surgeon might make me feel better, but I'm pretty sure that it's just going to give me even more things to be terrified of.  The day we have to take our daughter for open heart surgery will absolutely be the worst day of my life.

Mommy Had a Meltdown

To say that today was not a good day is an understatement.  Kennedy had an earlier than planned cardiology appointment, to get her Lasix increased.  Mommy had a meltdown.

While she is gaining weight, the doctor wasn't thrilled with it.  She's weighing in close to 10 pounds now, but not gaining as fast as she was a few weeks ago.  Hopefully, with her Lasix increased (again) she will start gaining faster (again).  He explained that the heart failure is progressing, which is normal for her condition and to be expected.  Every time I hear the words *heart failure* in regards to my daughter's condition I cringe.  Well today, I cried.  A lot.  I know that she's doing well, and that this is to be expected, but it doesn't make it any easier to face.  The poor doctor, was not our normal cardiologist.  We met him in the NICU (and he saw my boobs while I was pumping and talking to him one day.)  I'm not sure if he remembered me, or my boobs - but he remembered Kennedy for sure.

Each day closer to surgery, things get harder.  In the beginning, it was months down the road.  We had other obstacles to overcome.  Now when we refer to surgery, it's in *weeks.*  While I can't wait for it to be behind us, so we can start really living our lives, I also dread the day.  I'm not entirely sure how I'm going to get through the next six weeks with out losing my mind.  I wake up completely freaking out about one thing or another.  How am I going to starve my baby the night before surgery?  How am I going to get through saying our "goodbyes" as she goes into the OR?

She had to have blood drawn to check her electrolytes today.  I agreed that we would pay out of pocket just for them to do it at the specialty clinic, rather than having to go to the lab.  Of course, we had been there for almost 3 hours, and Kennedy was over it.  Mommy was over it, and we had both already cried.  I had to hold her, while they pricked her heel a few times and squeezed the blood out into a tube.  It was horrible.  She screamed, and screamed and screamed.  And I cried, and cried, and cried.  If I cried this much at a blood draw, how the heck am I going to handle open heart surgery?

Kennedy relaxing after her traumatic morning (notice the matching band-aids on her heel.)

Success!!!

Kennedy's Cardiology appointment went fantastic today!!!  I've never left feeling better.  The doctor was thrilled with her weight, how well she's eating and was really shocked at how active she is.  Everything else is doing great from a cardiac standpoint, and we don't have to go back for another three weeks.  That's just to see if her medication needs to be increased due to her weight gain.

We also talked about the surgery.  From a weight perspective - we are good.  She said that they typically do it between 4-6 months, and for babies with Down Syndrome they like to do it earlier.  She expected that since Kennedy is doing so well with eating and gaining weight, that her surgery will probably be done right around 4 months.  She said that the earlier it's done, the better results, and since she's eating so well, hopefully we won't have to stay in the hospital for too long.

And - even more great news, as long as I continue to give her the oil - one way or another - I can go back to breastfeeding!!  This is AMAZING news for us!  I'm so incredibly excited, that hopefully I'll be able to at least get her back to nursing the majority of the time.  I would LOVE to be able to cut back on how often I'm pumping, to just twice a day.

I'm so proud of how well she's doing!  I just know that we're going to continue on this path!

Drink Up, Buttercup

That's what my mom always tells Kennedy.  Well, apparently she's listening.  We had our Mom's Group at the birth center today, so I weighed her, to prepare myself for tomorrow's cardio appointment.  A whopping 9lbs 4oz!!!!  That's 7 ounces since last Tuesday and a grand total of 12 ounces in 12 days!!!

Fingers crossed that we can have an uneventful cardiology appointment.  I usually dread these appointments, but I'm going in with a new sense of confidence.  I've stopped obsessing over her weight and eating (for the most part) and she's doing well (or at least I think she is.)  I'm hoping that we can get out of there with out the "great formula debate."  I'll be sure to update tomorrow.

I can't help but to show off some more of Kennedy's funny faces from this afternoon.

Happy 8 Weeks Kennedy!!

The nine months of waiting for Kennedy's arrival seemed to drag on!  And now she's almost two months old.  I say it every Saturday, but I just can't believe how fast it goes.  Everyone warned me it would go fast, but I guess I just had NO idea.  She has truly changed my life.  

Her personality has really started to come through and she shows us something new every day.  I adore the big smiles and bright blue eyes....even at 4am.  I love seeing her kick her feet and wiggle around to the beat of the music on her toys.  It's even cute when she fights us over having a bottle.  She has learned to push it away, and plays games with the nipple when we put it in her mouth.

Being almost two months old also means that we are at the halfway mark to when surgery *may* be.  They told us they plan to do it at 4-6 months of age, and they prefer earlier rather than later.  It really hit me today, and the idea of it terrifies me, more than anything.  But at the same time, I want to get it over and done with.  I feel like we have a whole new personality waiting for us, once the "black cloud" I've come to know as surgery, has passed.  I'm ready to live "life as we know it."  I long for the days where I'm not obsessing over her weight gain and when I can *hopefully* go back to breastfeeding all the time, instead of living attached to my pump.  It terrifies me, but I'm ready to have the black cloud lifted.  It has to be done, sooner or later.  I just want it behind us, and I know my husband feels the same way.

Speaking of her weight, I've tried to become a little less obsessive this week.  It was consuming me.  I was getting frustrated, and I'm sure Kennedy was too.  There is only so much you can force feed a baby.  If she doesn't want to eat, she's not going to eat.  No amount of oil (or formula) is going to help if she's not going to drink it anyway.  And I only weighed her once last week.  There wasn't a single day that she ate the full 24 ounces, but hopefully she's still gaining a decent amount of weight.  Will I regret this new laid back approach?  Probably.  I already have that feeling of anxiety over Tuesday's upcoming cardiology appointment.  I suspect that it will be back to obsessing then.  But it was good to have a break.  To really enjoy being a mom, and to enjoy all the little things, with out analyzing every milliliter of milk that she is (or isn't) drinking.

And with that, I'm off to sleep.  I'll leave you with a few of Kennedy's MANY faces. 

Another Bump in the Road...Kennedy's Weight Gain

Or maybe I should say her lack of weight gain.

By the time Kennedy was 6 days old, she was back to her birth weight.  I thought things were going great.  She continued to gain weight, albeit rather slowly.  We had an appointment with the Cardiologist when she was 3 1/2 weeks old.  I was told she only weighed 7lbs 4oz.  This made NO sense to me.  In fact, that would have meant she'd just been losing weight for the past two weeks!  Of course, the Cardiologist wanted me to start formula.  I just could NOT believe she had lost weight.  I wasn't going to start anything until I weighed her somewhere else, and researched my options.  While I do understand that they want my daughter bigger and stronger for surgery, I'm not a fan of pumping her full of formula to do it.   The next day I took Kennedy to the birth center to weigh her.  She was 7lbs 11oz.  Okay, there is NO way she was gained that much in one day.  The following day at the pediatrician's she weighed 7lbs 11.5oz.  Clearly the cardiologist's scale was wrong.  The pediatrician advised me to start adding formula to her bottles of breast milk, as the cardiologist had suggested.  He said that it would be the "easiest way."   However, in case you haven't figured out, I'm pretty much determined to avoid formula if at all possible.  I didn't become a parent so that I could take the "easy way."  If I HAD to introduce formula, I was even willing to go as far as making my own goat's milk formula.  I researched this option in depth.  There was one problem - it's apparently illegal to buy fresh goat's milk for human consumption in the state of Florida.  Call me unrealistic - but I went on a quest to find someone that had a goat.  Okay, okay...I know, unrealistic and a little crazy, but what can I say - I'm a mom and I'm willing to go to all lengths.  I even joked that I could sneak onto a nearby ranch and find a lactating goat - or perhaps I could place an ad on Craigslist for "quality goat's milk."
***Disclaimer - Please don't take any of my drastic attempts at obtaining goat's milk seriously.  I had to keep some sense of humor through all of this, or I would have probably had a breakdown. 


This is once again where I owe another huge thank you to Angie.  After a lot of research, we came up with a plan to enhance the caloric value of my breast milk.  After a Saturday afternoon at the natural food store, and a collection of protein powder and oils, I was headed home with a plan.  This just HAD to work.  I would begin adding oils to as many foods as I could come up with.  I would drink protein shakes once or twice a day.  It took some experimenting, and some getting used to.  Marlon could not believe the crazy combination of things I was putting together - and actually drinking!  But I was determined to make this work.  I was not ready to give up my fight to have my baby formula free.

The good news - a week later, Kennedy had gained weight!  The Cardiologist was thrilled!  The Pediatrician was thrilled!  I felt wonderful - I had once again won another battle against formula.  Kennedy was started on Lasix that week.  They considered her to be in "heart failure."  Those are two scary words for a mom to hear when it comes to talking about your 5 week old baby.  But the Lasix would help get us through until the surgery.  Because of her slow weight gain, I was still waking her up at night to eat.  Kennedy takes her sleeping very seriously, and this was a nearly impossible task.  I spent night after night taking her clothes off, rubbing a wet cloth over her feet and hands, trying to get her to wake up to eat.  It was exhausting.  I felt like the only mother to be sleep deprived because I was trying to wake the baby.  Finally, the day came where the pediatrician gave us the "okay" to stop waking her!!!  We were finally able to go a full night with out me setting my alarm for six different times, trying to feed her.  Not only did I appreciate a full night of sleep, or at least waking up to a hungry baby, I'm pretty sure my husband appreciated the fact that I was no longer going to all lengths to wake a sleeping baby, followed by a mini breakdown that she would never gain weight (all at 2am...and 3am...and usually 4am.)  I'm sure this made for better days at work for him (sorry honey.)

We continued to gain weight reasonably well for the next two weeks.  The Cardiologist was looking for her to gain an ounce a day.  By the time we went for our 2 week follow up, the nurse announced we had gained only 4oz.  Excuse me?  I had taken her to the birth center just two days prior and she had gained a total of 10oz. in two weeks.  How could this be happening AGAIN??  I questioned the accuracy of the scale and was told that if I could prove she weighed differently somewhere else, they would have their scale calibrated!  I just kept thinking someone needed to go back to school for "Weights and Measures 101."  Of course, the "F" word came out of the Cardiologist's mouth again.  Once again, I was NOT going to give her formula until I weighed her elsewhere.  We finished at the Cardiologist, and I headed straight to the birth center.  Where, I of course found her to weigh  8lbs. 9oz.  That would mean an 11oz gain in 14 days.  So I began another battle with the Cardiologist's office.  I even sent them proof of her weight from the birth center.  I threatened to find a new doctor, to have the surgery performed elsewhere.  If I couldn't trust them to accurately weigh my baby, how could I trust them to perform open heart surgery.  This warranted a call back from the doctor as well.  She was forced to admit that she was equally confused by the variation in scales.  I insisted that there was such a small gap in what they wanted her to gain, versus what she was gaining - that I wasn't comfortable introducing formula.  I demanded to know alternatives.  There's plenty of research out there showing that it is just as effective to use oils to encourage weight gain.  She asked me to weigh Kennedy at the pediatrician the next day, and get back to her - and we would further discuss it.  Shortly after, I got another call from her.  (Perhaps she decided it would look bad to lose an open heart surgery patient over a weight issue.)  She explained that she discovered the nurse wasn't completing the conversion accurately.  That Kennedy did in fact weigh 8lbs. 8oz. in their office!  Once again - mom's not crazy!  So Kennedy was gaining weight.  Just not QUITE what they wanted.  She agreed to a plan to begin adding oil to Kennedy's bottles, in order to boost the number of calories that she's getting.  Another struggle against formula has been beat- BARELY!

The hardest part of this struggle is constantly hearing that if she were a "normal healthy baby" this would be completely acceptable.  A parent wants nothing more than to think she has a "normal healthy baby."  It's been very hard for me to accept that statement.  In fact, I still don't think I have.  I know Kennedy has a heart defect, and that her heart is working a lot harder than other babies.  I know that she has Down Syndrome.  But to me, none of this qualifies her as abnormal or unhealthy.  I cringe every time I hear that she's "not a normal healthy baby."  

This whole situation has made me a little obsessive about her weight.  I try not to stress, but it's pretty much impossible.  Sometimes I feel like it consumes me.  I find myself taking her to the birth center to weigh her twice a week.  I hate that it consumes me 24 hours a day, 7 days a week.  I spend soo much time worrying about her weight, making sure she's effectively nursing, making sure she's getting enough bottles - and the right amount of oil.  I even downloaded an iPhone app to track her feedings.  I never imagined I would be doing this.  What ever happened to the idea of "feeding on demand?"  This wasn't what my husband or I had planned.  This isn't how it was supposed to be.  But again, another realization, things aren't what we expected.  This is just another area we need to make adjustments in our "plan." 


Stay tuned....I'm sure there will be more posts to follow on this topic.  

Survival Stories From the NICU

Kennedy's First Day in the NICU

Hopefully this entry doesn't come across completely scatter brained.  Although it felt like eternity that we were there, seven weeks later, it's very much a blur.

I have to admit, I had no idea what to expect going into the NICU.  All I knew is that in reality, we should have been going home from the birth center, with our sweet baby girl.  I wanted more than anything to be in my bed, snuggled up with her.  Instead, I arrived at the NICU to find her under warming lamps with tubes and wires.  Despite the Down Syndrome, everything else was going well.  I hoped we would be discharged in a day or so, and could move forward with life as we would soon get to know it.  

Upon arrival to the NICU I was soon faced with a "Lactation Consultant."  I put that in quotes, because I can't believe anyone who would say the things she said, would actually call themselves a Lactation Consultant.  She said things like, "Babies with Down Syndrome can't breastfeed,"  "You'll have to give her a pacifier," and "You'll need to supplement with formula."  I looked at Andrea and Angie with confusion and amazement.  I couldn't believe what I was hearing.  Luckily they spoke up, and defended the fact that Kennedy was already breastfeeding!  I was still in shock, and numb.  I hadn't yet realized that I would soon have to stand up for my daughter and fight our battles.  This was only the beginning of the breastfeeding versus formula battle.  Little did I know at that moment, just how hard things would become.  About the only thing I can thank the "Lactation Consultant" for, was assuring that Marlon and I were able to stay in a "courtesy room."

Kennedy had an echo performed on our first day there, and the Pediatric Cardiologist came over to talk to Marlon and I.  I was sure that he was going to tell us that everything was fine.  After all, her EKG had been normal and no one heard anything abnormal when listening to her heart.  I could not have been more wrong in my assumption.  The doctor explained that there were a few things going on with Kennedy's heart.  She had an AV Canal Defect and a narrowing of the aortic arch.  He explained that there was also a valve they would be watching to see if it closed.  Then the words "open heart surgery" came out of his mouth.  I can honestly say, I pretty much lost it at that point.  My sweet baby girl, just hours old, was going to need open heart surgery in a few months.  This was like a nightmare.  I kept thinking I had to be dreaming because this couldn't be happening.  The news of her diagnosis of Down Syndrome was trivial compared to the heart defect that would require open heart surgery.  To make matters worse, my dreams of a quick exit from the NICU were deflated when he told me that we would be there for three to seven days.  

Kennedy getting lots of snuggles from mommy and daddy.

Little did I know, I was in for what turned out to be the longest five days of my life (to date.)  Some of the nurses in the NICU were wonderful, and for them I am grateful.  However, there were just as many who I often termed "Nurse Ratched."  I quickly found that each shift change brought about a huge level of fear and anxiety over who the next nurse would be, and what struggles we would encounter.  Kennedy was nursing great, and I was pumping around the clock in hopes that I could build my milk supply.  The night after she was born, her IV was already removed and her oxygen had been decreased.  She was doing really well.  By the next day, concerns over her weight began.  She had lost a few ounces, just as any new baby does.  But we were being held to "NICU Standards" and that wasn't acceptable.  Our nurse started pushing me to supplement.  I refused.  I was still pumping around the clock, every 2 hours.   I was nursing Kennedy and giving her bottles of what I was pumping.  We had an awesome night nurse, her oxygen would soon be removed and I felt like we were really making progress.  I left the NICU, headed to my room to shower and get breakfast.  I felt confident that we were on our way to going home.  I even sent out text messages saying how great things were going. 

Kennedy, snug as a bug in her NICU bassinet.

Boy was I shocked to go back to the NICU a short 1.5 hours later to be told that the Neonatologist wanted to put a feeding tube in!!!!!  This is just one example of the inconsistencies that occurred from one nurse/shift to the next.  Not only were some of their nursing practices inconsistent, so was their documentation and verbal communication.  I was asked by several nurses about my "breech birth" and the neonatologist was apparently under the impression that I had no prenatal care.  This particular nurse who happened to mention they wanted to put a feeding tube in, was told that the Cardiologist discussed it with me the day prior and I "went running from the room crying."  I had barely spoken with the Cardiologist the day prior.  Did I happen to mention we had not even seen a neonatologist since the day we arrived?  That was Saturday, and it was now Tuesday.  Marlon and I began another argument.  My husband really stepped up to deal with the "medical" side of it at times.  I was emotionally a wreck and just couldn't handle it - reasonably.)  I am so thankful for Angie and Andrea who were always available to provide support, encouragement, and information.  Just as I refused to supplement with formula, I refused the feeding tube.  My compromise was that I would pump, and give her bottles. She needed to eat 2 ounces every 4 hours.  I knew this would be a challenge.  She was a sleepy baby.  But I was determined that I wasn't going to give in to a feeding tube with out a fight.  Well, my strong little fighter did it!  We proved them wrong, and even the neonatologist had to admit that he was wrong, and a feeding tube wasn't needed.  Kennedy gained back 2 ounces that day!  There was an end in sight!  

 Andrea visiting Kennedy * 2/22/11

After standing my ground, and Kennedy and I proving them right....and a meeting between my husband, myself and a hospital administrator, I think everyone started to realize that I meant business.  People who had "looked down on me" for not having a traditional birth were suddenly interested in hearing my story.  

After five days in the NICU, a terrifying diagnosis of a cardiac defect, and confirmation of the Down Syndrome, we were finally able to bring our sweet baby girl home.  She was weighing in at 7lbs. 4oz.  Just 2oz. less than her birth weight. 

Those five days were an eye opening and emotional experience.  I was still dealing with the shock and reality of Kennedy's diagnosis, and I quickly realized something I knew all along.  You can't just go with what the medical staff says, because while they did go to school, no one knows your child better than you.  Our NICU stay also showed me how supportive our families are, and how much we would soon be depending on them.  Sadly, the experience also taught me who my real friends were (more on this later).  I am grateful to our friends and family who were with us, supporting us emotionally and physically.  I'm thankful for all of our family and friends (and even strangers) who provided us with their love, support and prayers.  I am especially grateful to Andrea, Angie and Bea who went above and beyond to provide such a high level of physical and emotional support through visits, phone calls and text messages.  Marlon and I truly could not have gotten through those five days with out everyone's support.

Kennedy getting strapped in for her ride home!  2/24/11