4 Days

It's hard to believe it's already Thursday, and that four days from now, we'll be in the hospital, preparing for the hardest and longest day of our lives.  The past four months have proven what wonderful friends and family we have, and how the support of so many people we don't know can make an impact on our lives.  For that I am grateful.

As it stands now, I'll be taking a short hiatus from blogging, Facebook, etc.  Basically, I'm shutting my computer off for a few days.  I'll be back on Monday night from the hospital, or Tuesday morning to provide updates on how surgery is going.  I want to enjoy the next few days with my daughter and husband.  Not to mention, I still haven't bothered to start packing.  I appreciate all of the thoughts and prayers that you are sending to Kennedy and our family. 

Smiles for Mommy and Other Ramblings

It hits me every day just how much Kennedy is growing up.  Before too long, I suspect that she'll be sitting up on her own.  She can do it with minimal support, and she loves it.  Much better than tummy time!  Have I mentioned what a sweet baby she is?  She wakes me up in the morning by kicking me.  What on Earth would she do if we didn't sleep together?  She wakes up such a happy baby.  I get some of the biggest smiles of all.  Each smile melts my heart more than the last.  I can't get enough of them.  This afternoon we snuggled up in bed, she looked me in the eyes and was smiling and cooing away.  This resulted in one of my "accidental naps" that I used to take when I was pregnant.  It was so good to snuggle up with her and have a nap on a rainy afternoon.  This is exactly how I wanted to spend our time the week before surgery. Tonight she sat in her high chair and played with her toys while I made dinner.  She is growing up way too fast!  I'm not ready for this.  I love seeing her learn and do new things, but it is also so hard seeing her grow up so quick!

I don't typically use the blog for product reviews, but I can't NOT address this one.  Anyone who has had to pump for any amount of time knows what a pain it can be (literally!)  I've read many reviews on Pumpin' Pals, and finally got a set.  Let me tell you, these things are amazing.  I was able to pump more milk, in less time, and COMPLETELY pain free.  These things have seriously changed my life.  They have given me a renewed feeling of confidence that I can pump for a year if I need to!  I highly recommend them (http://www.pumpinpal.com/).

It's so hard to believe that we're just around the corner from Kennedy's surgery.  That next week at this time, we'll be on our way to being recovered.  I am so thankful to all of our family who will be traveling or taking time off to spend with us over the next couple of weeks.  I am thankful for the family, friends, and for my readers who are all keeping Kennedy in their thoughts and prayers.  Everyone's words of kindness, encouragement and prayers mean the world to us.  This is what will get us through this challenge.  THANK YOU and keep those prayers coming over the next few weeks!

Paying It Forward

Since Kennedy turned four months old last weekend, I have been thinking about how it feels like Kennedy was just born.  I remember how hard those first days in the NICU were, and how difficult it was for us to accept adjust to all the changes in our life.  We received an incredible amount of support from so many people.  Even people that I got to know online, or met through other people.  We'll be leaning on those same people for good thoughts, prayers and support in the coming weeks as Kennedy undergoes her open heart surgery.

Today came my chance to help another mama and baby in need.  Their need is a little different than mine were.  And their story made me realize once again, that things could be worse or even harder.  This mom has a baby with Down syndrome.  Unfortunately, mom also has cancer and is in need of breastmilk.  As I've mentioned in past posts, I've been blessed with an incredible supply of milk.  The deep freezer we purchased last month is already half full.  Pumping is VERY hard and time consuming.  But it's worth it.  And it feels amazing to be able to give this mama and baby a part of my stash.  We have a lot of variables in our near future.  I'm hoping Kennedy will exclusively breastfeed eventually, and it's quite likely that after surgery she'll increase the amount that she eats per day.  I want to make sure that Kennedy has breastmilk until she's at least one, but I hope to be able to continue helping this mama and her sweet baby.  I know how hard I had to work and fight to make sure that Kennedy was able to continue getting my milk.  I want to be able to help a mama who knows the importance of breastmilk, but isn't able to provide it herself.  I'm also on a mission to find other moms who may be able to help.  So, if you're in the area or know someone in the area who may be able to donate milk, please send them my way.  They can contact me via email at lifeasweknowitjennifer@gmail.com.  I'm sure this mom will appreciate anything that she can get.

Of course, I can't finish this post with out another picture of just how big Kennedy is getting.

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. 

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.  

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