Saturday, April 30, 2011

It Could Be Worse

Well, it's been "one of those weeks" around here.  I'm still battling Kennedy's nursing strike, and I went against everything I planned, and she got her first round of vaccines this week.  I'm still turning up empty handed on our search for a pediatrician.  The fact that surgery is about six weeks away is starting to hit me, and I'm completely freaking out.

I rarely watch TV and have been with out the Internet for two days, so I've been in the dark with a lot of what's going on.  I turned on the TV today and saw the devastation across the country, as a result of the horrific storms.  Lives lost, people missing, and homes destroyed.  As bad as my week seems, there are a lot of people who have it a whole lot worse.

I'll leave you with some more expressions from little Miss Kennedy. 
Dealing with our nursing strike...

I think she was dreaming of the mall....or maybe milk.   

Hi Mommy

My friend Sophie (the most worth while, over priced giraffe) 

Wednesday, April 27, 2011

Just One of Those Days

The first week of Kennedy's life it was like a whirlwind.  When Kennedy turned two months old I really looked back and thought about how far we've come and what an adjustment it has been to what our new life is really like.  I've been handling it pretty well I think, but today is just one of those days that I want to scream and cry.  It's one of those days where I don't want to accept the fact that things can't be what we planned.

For starters, Kennedy has been on a complete nursing strike.  I've been trying and trying, and trying to get her back to it, but she has pretty much decided that she just wants bottles now.  Considering I planned to exclusively breastfeed, this is devastating for me.  I didn't even plan on owning a pump, let alone having to use it all day every day.  I know that the fact that she gets my milk is what's most important, but the reality of is really upsetting.  I can't stop trying, but the kicking and screaming fits that go on when I'm trying to get her to latch are REALLY hard (on both of us.)

Then there's the vaccination issue.  I was able to have a lengthy conversation with our Cardiologist today, and she suggested we stick to the normal vaccine schedule because of Kennedy's heart condition and the fact that she will be having surgery.  The fact that she could get Hepatitis B, Pneumonia, or Pertussis in the hospital is pretty terrifying.  She reminded me, that I need to keep in mind, I don't have a "normal healthy baby" and I'm not going to be able to do what we had planned on.  I hate this.  I hate those words, and I hate the fact that I feel completely out of control.  I can't help but feel like no matter what decision I make, it could be the wrong one.

As for our search for a pediatrician....well, that's going about as well as the rest of my day.  I thought the meeting I had today was going reasonably well.  And then at the end she asked me if I didn't have prenatal testing or ultrasounds, since we didn't know that Kennedy had Down Syndrome before she was born.  After my explanation I got the usual eye roll.

Score - Jennifer   0   Medical Offices  7

With that, I think it's time to call it a day and go snuggle my sweet baby girl.  That makes any day better.

The Search is On

For a new pediatrician that is.  Why is this so hard?  I've worked for a number of pediatricians (eight to be exact - and three pediatric nurse practitioners) and I would love for any...okay, almost any of them to be located in this area.

I got a great recommendation on a pediatrician from a friend, unfortunately, he doesn't take insurance.  Okay, I'll pay out of pocket and file it with my insurance.  After all, it's a pediatrician, just how much can it cost?  I'm sorry, what?  $3,200 for a new patient visit?  Cross that one off the list!  So much for my theory of, "Maybe he doesn't take insurance because he doesn't want to deal with billing and collections."  Clearly he's just trying to get rich.  

On to the next one.  I've gotten a great recommendation on this one from my Chiropractor.   I call.  And call.  And call.  Apparently my call cannot be answered (according to the automated message.)  But there's not an option to leave a message either.  And they seem to be an urgent care as well.  And they do therapeutic massage.  And medical weight loss.  And a number of other things I've never heard of.  Okay, maybe this isn't the best option either.

Two more offices that I've heard good things about.  Two messages left.  Zero calls back.

Score - Jennifer 0   Medical Offices 4

How about my own family practice doctor.  Yes, it's an hour away, and I've been meaning to switch, but I really do like her.  Guess what?  She won't take my special needs baby.  I'm hoping the receptionist meant to say, "You should really seek a pediatrician," and not "We won't take a special needs child."  Well,  I guess I'm looking for a new doctor now too.

Another office, another call.  Their number has been disconnected.  Nice.

Score - Jennifer 0   Medical Offices 6

Last chance for the day....I actually get to talk to someone, who indicates that vaccine schedules are reviewed on a patient by patient basis.  So, she suggested I come in to meet with the doctor and discuss our "situation" and see if I'm happy with them before changing.  This sounds promising.  Fingers crossed.  I'm meeting with her tomorrow. 

Am I expecting too much?  Maybe I've been spoiled.  I received truly AMAZING care from my midwives during my pregnancy.  Why can't pediatricians provide the same level of care?  I don't just want someone who will agree with me.  I want someone who will listen to my concerns and not just expect me to do things because they said so, or because the American Academy of Pediatrics says so.

Sunday, April 24, 2011

Kennedy's First Easter!

The Easter Bunny came to Tampa!  It's amazing how much holidays change when you have a child.  I don't remember the last time Easter was so much fun.  When I was a kid I used to make my mom hide the eggs over and over and over again.  In just a few years I'm sure I'll be doing the same thing for Kennedy.  We ran out of time to color eggs, and I don't think Kennedy really missed it.  We filled our day with lots of excitement, and both of her Grandmas came over to share in all of the Easter fun!

I also decided that I really need to learn how to use my camera!  I did a few photo shoots with Kennedy today, and we had so much fun.  I'll try not to bore you with the 500 pictures, and just give you the highlights and her best expressions!

Daddy even dressed up as the Easter Bunny!  We were kind of sad that we couldn't get the "first Easter" picture with the Easter Bunny.  Mommy put bunny ears on daddy, and drew whiskers on his cheeks!  Kennedy wasn't very happy, and I'm pretty sure the whole thing went down about as well as it would have had I taken her to the mall.

We also took Kennedy swimming for the first time today!  She absolutely loves the water, so I was hoping that the pool would go over just as well.  She loved it.  We ran into two small problems.  Her hat kept falling over her face, and there were a TON of love bugs.  Hopefully they go away soon so we can make another trip to the pool.

We had a wonderful day!  I'm so excited for all of Kennedy's "first" holidays!  If Easter was this much fun, I can only imagine what Halloween and Christmas will be like! 

Saturday, April 23, 2011

'Twas the Night Before Easter

It's the night before Kennedy's first holiday and I'm so excited!  There are eggs ready to be dyed (okay - so we're a little late on this but we ran out of time today.)  The Easter Bunny has prepared her basket, and left all of her goodies next to her swing.  Her swimsuit and sunscreen is ready for our trip to the pool.  Her dress is ready, and mommy has lots of cute stuff to take pictures with.  And we have food for the BBQ with her Grandmas.

Mommy and Daddy may have gone a bit overboard.  (And Grandma helped!)

Daddy is prepared to wear bunny ears and whiskers drawn on with eye liner.  Since we couldn't risk her getting sick, by taking her to see the Easter Bunny, daddy will be the pseudo bunny for some pictures in the morning.

I can't help but smile and feel so lucky to have such an amazing baby.  I know she's not going to remember it, but I'm so excited, and I will admit that I may have gone a little overboard!  I put her into her Easter jammies tonight, and while I gave her a bottle daddy read "The Night Before Easter" to us.  She's now fast asleep on daddy's chest, getting a good nights sleep in preparation for a day full of Easter fun!

Showing off my Easter jammies!

Reading The Night Before Easter with Daddy!

Here We Go Again...

Another day, another debate.  What is wrong with making an informed decision?

***Disclaimer***  This post is not meant to be offensive to anyone who chooses to vaccinate their children on a normal schedule.

Today was Kennedy's two month well baby visit.  The good news - she's doing great!  We are up to 9lbs 5.5oz and 21 3/4 inches!!!

The bad news - I once again feel like I'm playing a game of battle the medical system, just because I'm trying to make informed and educated decisions regarding my daughter's healthcare.  When the topic of vaccinations came up, I expressed that I was still doing research, we had some concerns, and for right now we were delaying all vaccines.  Now, maybe I'm expecting too much, but I made it clear that I had concerns.  I would have expected that a physician would have addressed those concerns, or even asked what they were.  Bringing up that my baby has to go into the hospital for surgery is not sufficient enough information for me to make an informed decision.  I would hope that my daughter isn't going to pick up Polio or Diphtheria in the sterile operating room.  Of course I'm worried that she'll pick something up in the hospital.  MRSA or hospital acquired pneumonia are the first things that come to mind, and she can't be vaccinated against either of these.  So was I given information to help me make an informed decision? No, I was pretty much just told to do it, as the doctor walked out of the room.  In fact, the exact words were, "Just vaccinate this baby."

So now, the quest for a new pediatrician will begin.  While I was really pleased with our choice of pediatrician before Kennedy was born, I feel like the circumstances have changed, and maybe this isn't such a good match.  This wasn't the only issue, or the only time that my concerns were dismissed.  Apparently the laid back attitude that I liked about him in the beginning, isn't working so well on our journey.  I'm not looking for someone to agree with my view points.  I'm looking for someone who will hear out my concerns and help me make an informed decision.  And so the quest begins.

Enough drama.  On to more fun things!  I did some more shopping today (someone point me in the direction of the shopaholics meeting.)  Why is it that no matter how many dresses she has, I can always find more?  Daddy is just as much of a sucker for cute clothes as mommy is.  And we may or may not have gotten a little out of control with Kennedy's Easter goodies.  I probably should have gotten an Easter basket the size of a shopping cart.  (I'm not kidding.  You'll see Sunday.)

We also have plans to take her swimming for the first time this weekend - if the big pool isn't warm enough, it'll be in the "baby" pool (you know - the one we bought her for Easter.)  So there will be lots of pictures to come this weekend!

On that note, here is a picture of Kennedy with her new toy - "Sophie the Giraffe."  Thanks Grandma!!!

Friday, April 22, 2011

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.

Tuesday, April 19, 2011


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!

Monday, April 18, 2011

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.

Sunday, April 17, 2011

It Amazes Me...

I will never get over the enormous amount of support that we have received from so many people over the past eight weeks.  I've talked a lot about the support we've received from the people closest to us.  Of course, you expect that from your family and friends, and many people have gone above and beyond what we could have ever imagined.  Of course, you expect support from your family and friends, and most of the time you get it.  But, that's not always the case.  Sadly, this experience has taught my husband and I a lot about who our true friends are.  It has also taught us how amazing people are.  

I'm a part of a few message boards and online groups, and I'm always in awe at the number of people who are following Kennedy's story and who have reached out to provide advice, support, encouragement, or just words of kindness.  After Kennedy was born and we received her diagnosis there was an outpouring of support.  Upon posting her birth announcement on these message boards, we received hundreds of comments and well wishes.  Since starting this blog so many people have reached out to tell me what a great job we're doing, and that they are always thinking of us.  People that I haven't spoken to in years.  People that I don't know.  People that live across the world, and people that live around the corner.

It brings tears to my eyes when I think of all the people that are sending good thoughts and prayers to Kennedy and our family. 

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. 

Wednesday, April 13, 2011

It's the Little Things

It's amazing how your life changes when you have kids.  I always wanted to be a mom, and I know life would be different.  But I never knew just how much I would change.  I used to love five star vacations, fancy dinners and shopping sprees.  None of those things matter anymore.  Wait, I take that back.  I still love the shopping sprees.  But instead of Coach, it's Carter's.  And when I walk into Macy's, I go straight to the baby clothes, instead of the shoe department.  Even if my husband or I actually need something, we end up changing our minds and spending money on the baby. 

It's the little things that make me happy now.  Waking up to a smiling baby in the middle of the night.  Watching her stare up at the sheep go 'round on her swing, like it's the most amazing thing she's ever seen.  I love seeing my husband's face light up when he gets home, and watching them interact.  I get so excited when I see that she's gained weight.  Or when she does something new, even if it's just holding onto her toy.  I love seeing the expressions on her face while she kicks her feet and waves her arms at the toys on her activity mat.  Most of all, I love the snuggle time with my baby girl.  Yes, I know there is house work to be done and meals to be cooked.  Or at least, I know there should be.  Usually I spend a large part of the day feeding her.  But I can't help but spend more time playing with or cuddling my sweet baby girl.  I love to hold her on my chest and watch her sleep so peacefully.  These are the moments that I live for now.  No, my house isn't spotless.  There are burp cloths and toys everywhere.  And I'm pretty sure that the man at the local pizza restaurant knows me by name.  (We've eaten take out from there twice this week.)  But none of that matters.  Kennedy will only be little once, and these are times I can never get back.

I call these the counting sheep pictures!  Kennedy loves her swing, and loves her sheep friends!

Snuggle time with Mommy!  We can never get enough of this!

Kennedy loves to catch up on her day with daddy when he gets home from work!

Monday, April 11, 2011

Look How Far We've Made It

How can it be?  Is she really 7 weeks old already?  When did that happen?  I feel like it was just yesterday that I was wondering if I was really in labor.  Looking back, it amazes me just how far we've come.  For the first week I wondered how I would ever deal with my new life.  I didn't think I had it in me.  The last seven weeks have taught me a lot.  I've learned how unfair things can be.  I've learned how important a good support system is.  I've learned that I am Kennedy's best advocate.  Most importantly, I've learned to trust my motherly instinct and not to give up.  

Kennedy has shown Marlon and I a new meaning to life.  We always talked about having children.  For eight years, we dreamed of what it would be like to be parents.  I can honestly say, it's better than I ever imagined.  Kennedy has changed my life in ways that I could have never imagined, and I know my husband would say the same.  It's the most simple things that give us the most joy now.   

She is the sweetest and most easy going baby I have ever met.  She continues to amaze me more and more every day.  I am so proud of her, and I'm so proud of the way that she has taken on the world.  She has proven people wrong since day one, when they said she couldn't breastfeed.  We made it out of the hospital not only with out formula, but we avoided a feeding tube.  They told us she wouldn't have good muscle tone.  She's holding her head up, pushing down with her  legs, and she even rolled over this week!!  Yes, you read that right.  At 6 weeks and 6 days she rolled over from her belly to her back.  I even have the video to prove it!  I could not be any more proud of my sweet baby girl.  She may not be a champion at gaining weight, but clearly we're doing something right!

While I'm on the subject of how great Kennedy is doing, it would be a good time to bring up our Evaluation with the Early Steps program.  This was done on Thursday.  I was really nervous going into it.  Of course I thought Kennedy was doing amazing.  What mother doesn't.  But I've come to expect a challenge of some sort any time we have an appointment.  I'm proud to say, that it went amazing.  The evaluators were shocked.  They said that they just don't see babies her age, with Down Syndrome, doing the things that she's doing.  She scored average to above average for "normal" babies her age, in all areas that they tested!!!  They did not recommend any additional services at this time.  At my request, she will continue to be evaluated, so that we can be sure she's staying on track with meeting her milestones.  

Here are some more pictures from Kennedy's first seven weeks!

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.  

Sunday, April 10, 2011

Our Next Road Block - Finding Help

Once I came to terms with things, I decided it was time to get busy.  It was our job as parents to make sure that Kennedy has everything she needs.  Not just the necessities of life for a baby, but the services that would help her get ahead.  Sadly, we left the NICU with very little direction with where to start.  Luckily, I am the queen of Google and spent what little free time I had, researching.  And researching, and researching.  Really.  How could this information be so hard to come across.  Thanks to my wonderful midwives, I was put in touch with another mom in the area, who has a child with Down Syndrome.  She was a great source of information and friendship.

I started by contacting Childrens Medical Services.  I was told by the Coordinator that because Kennedy is covered under private insurance, that there was nothing they could do for us.  I couldn't believe what I was hearing.  Because Kennedy didn't qualify for Medicaid, she said we were not eligible for any programs.  I inquired about Medicaid as a secondary coverage, since clearly our out of pocket costs would be significant.  There is a waiver that she is eligible for because she has Down Syndrome.  I asked how I needed to go about applying for that.  I was basically told not to bother.  There's a five year waiting list.  Yes...FIVE YEARS!  It took me time to pick my jaw up off the floor.  How is it that we pay so much in taxes, and work so hard, yet we can't get the help we need.  Just as I finally got my jaw back where it should be - the CMS worker suggested that I get divorced...because then Kennedy would be eligible.  Excuse me?  Did I hear that right???  There was no way that 10 months after getting married, I was going to get divorced, just so I could find a way to "get around the system."  I dreamed of this life for too long.  I don't care if it's "just a piece of paper."  It means far more than that to me.  Do people actually do that?  Fortunately, after several phone calls and messages - I was able to schedule Kennedy for an evaluation with Early Steps.  They would provide services, for physical therapy, speech therapy, and occupational therapy at no cost to me - up until she turned three years old.

My next task was to apply for SSI Disability benefits.  This was what everyone told me to do ASAP.  Three minutes into the phone call, I was told we didn't qualify.  Once again, excuse me?  I thought Down Syndrome was a qualifying disability?  Well, I was right.  It is.  But once again, we don't meet the income requirements.  Apparently no one takes expenses into consideration.  Not to mention, in order to qualify we'd have to be making so little money, I have no idea how we would survive.  I don't know how one person could live off what they expect, let alone three.  But, silly me, what was I thinking?  She directed me to the Agency for Persons with Disabilities.  Perfect!  Surely they can point me in the right direction.  I called immediately.  I left a message.  I left four more messages that week.  (That was five weeks ago, and five MORE messages ago.  I have yet to hear from anyone.)

Well, since Kennedy doesn't qualify for any programs because we are covered under a private insurance, surely our insurance company must be able to provide some information or resources.  One phone call, and six transfers later, I was able to finally talk to someone.  A representative from the Nurse Advice Line!!!!  I hung up the phone shaking my head, more frustrated than ever.  I did manage to get assigned a "Case Worker" out of that phone call.  She provided me with the website for the National Down Syndrome Society.  Like I hadn't come across that yet!

Next stop - a Social Worker at the hospital where Kennedy will have her heart surgery.  She researched some options for us, in hopes that we could purchase a supplemental plan, to cover Kennedy's our of pocket medical expenses.  Guess what?  She turned up empty handed.  She also stressed that she didn't think we would qualify for the hospital's reduced payment plan.  But she did tell me not to worry, because my daughter would get the care she needs, and we can "figure the rest out later."  Good, I'm glad they are aware of that.  Thank you!  One battle I don't have to fight.  And they will likely get $25 a month, just like everyone else....for a really long time.

Reality Hits - Life at Home

Our first day and night at home were amazing.  We were finally able to enjoy our baby with out wires, monitors, or people standing over our shoulders.  It felt wonderful to enjoy what we had expected to do days before.  Something as simple as sitting on the couch with my husband next to me and my daughter in my arms made me so happy.  It was time for Marlon and I to really enjoy our baby girl.  And not just us - our family was finally able to hold and snuggle her too.  My mom was so excited to have quality time with her first grandchild, and my dad would soon be arriving for much of the same.  I am so thankful for my birth experience, because physically, I felt amazing.  Even after running around the hospital for 5 days I barely felt like I had just given birth.(The worst part was those darn stitches!)

Snuggling with Grandma for the first time. * 2/24/11

One of Kennedy's favorite places to nap...mommy's chest. * 2/26/11

My emotions were another story.  The reality set in, and I was a wreck.  I was still getting over the shock, and dealing with the fact that life would never be what we had always imagined.  I loved Kennedy more than anything, from the minute she was born.  Of course I wanted the best for her, and I didn't want her life to be full of challenges.  I didn't know what to expect now, or in the future.  I cried.  I cried a lot.  I had all these hopes, dreams and plans for how we would raise her, and now things were all different.  At the time, nothing made sense.  I didn't understand how this could happen to us, or how I could possibly deal with what was ahead.  I didn't understand it at the time, but I was truly grieving the loss of the life that I was expecting us to have.  Unless you've been through it, you can never truly understand.

It was really hard to talk to people.  I didn't expect them to understand.  And honestly, no one could say anything to make our situation better.  But sadly, there was always something that could make me feel worse.  I didn't want to talk to any else that didn't already know.  I didn't want to relive it all and tell the same information over, and over, and over again.  I even got to the point where I really didn't want to talk to anyone.  I didn't want to hear from anyone else that I just needed to "accept it and move on."  I didn't want to hear that we weren't given more than we could handle.  It wasn't that easy, I wish it had been.  

I wanted more than anything for life to be "normal."  Or at least what we expected "normal" to be.  I wanted to get back on track with breastfeeding.  After all, I had NO plans on using bottles, and I wasn't even planning to use a breast pump for a long time.  And here I was, attached to the thing every two hours.  I had a love-hate relationship with that pump, and seven weeks later....I still do.

I thought I would easily be able to transition back, and would be exclusively breastfeeding in no time.  Day two at home, and it was already proving to be difficult.  Angie and Andrea came over to visit and to help.  I've said it a million times, and I'll say it a million more - I could not have gotten to the point I'm at today, with out their constant support and encouragement. (And of course my husband, but that goes with out saying.  The first week truly brought us closer in ways I never imagined.)

Kennedy and I Visiting with Angie and Andrea * 2/25/11

By day three at home, breastfeeding was proving to be harder than giving birth.  No one ever tells you just how hard it is.  And our challenges certainly didn't help the situation.  It was on that day that Marlon and I made the decision to hire Angie for her postpartum doula services.  Okay, I'll admit, it was mostly my wonderful husband's decision.  He saw that I needed the support.  I had no idea at the time, just how much this would help me.  It was hard to accept that I wasn't going to be able to do this on my own.  It wasn't going to be as easy as I thought.  But then again - most things weren't going the way I thought they would.  Sadly, much of Marlon's vacation time was taken up sitting in the NICU, so when we came home we slipped right into life as usual.  It was hard for him to get back to work, keep up with household responsibilities, and still have time to enjoy being a dad.  I was spending much of my time nursing Kennedy, or trying to wake her up to nurse.  She took her sleep very seriously (and still does.)  I needed help...physically and emotionally.

Having Angie there a few days a week was exactly what I needed.  I was able to make up for the time spent in the NICU and really enjoy my time with Kennedy, instead of worrying about cooking or cleaning.  I was able to finally relax (and Marlon had a little less to worry about too.)  She helped me understand that what I was feeling was normal.  She was there for a shoulder to cry on...a lot.  Soon, breastfeeding started to get easier.  Reality set in, that the chance of me exclusively breastfeeding would be unlikely.  I was still determined that she would get my milk, one way or another.  I had not fought so hard in the NICU to avoid supplementing, just to give up.  I had to come to terms with the fact that I was going to have to be flexible on some things.

I also had to come to terms with reality.  I finally started to accept that life wasn't going to be like we planned.  It was still going to be wonderful.  It would still include most everything Marlon and I dreamed about and planned.  But it would be different.  There would be challenges and road blocks.  All the trips and vacations we planned for the summer would be delayed.  There would be a lot more doctors appointments, and of course - the big black cloud over us - her open heart surgery (at 4-6 months of age.)  But we had a beautiful baby girl, and that was one thing that hadn't changed.  We would be able to teach her things, take her places, and give her all the love in the world.
 Milk Drunk Baby * 2/26/11

I want to say yet another special thank you to Angie and Andrea for the tremendous support that they provided after Kennedy's arrival and our transition home.  Seven weeks later, that has not changed.  Marlon and I cannot put into words just how much it has helped us.  I also want to thank our friends and families who have done so much.  The kind words, prayers for Kennedy, the cooking, cleaning, visits with food, and running around makes a huge difference and is so appreciated.  

Saturday, April 9, 2011

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