Ground Control to Major Mom

Time to prepare for Surgery #3.  Early September is the target.  You may be asking yourself, "Why is it time to prepare if it's 7 months away?"  My answer, it's all mental prep.  I can't do it at all at once.  I'm slowly easing into this one.  And yes, it will take me 7 months.  

For the majority of the time since Rosemary was born, it's been a challenge to not think about the big surgeries and procedures.  The ER visits and all of the hospital stays that came up out of the blue were enough to throw a permanent set of blinders on that allowed us not to think, see or worry about anything unless it was the "day of" or right in front of us.

We visited Rosie's Cardiologist today, she gave me the most uplifting report on Rosie's heart. Her function has improved tremendously, which has been significantly down since we left the hospital in September 2007.  After Rosie's Norwood, she went into severe heart failure and we had two back to back admissions that kept us at the hospital for a month and a half.  The good news is that she is growing cognitively, physically and emotionally.  To get a positive report after the year we've had was just wonderful.

The hard part is that we now have to face the realities of preparing for surgery again.  Which, in my opinion, never gets any easier.  After her second surgery, I was so used to being at the hospital that I actually felt safer during the surgery and, of course, after it was over.  I thought I was mentally stronger and more capable of not getting emotional over the thought of surgery #3, the Fontan.  I was wrong.

I almost began crying today when I heard the words from her Cardiologist, "We need to start thinking about her next surgery and I want to cath her sometime in June."  

What?  In that very moment, my trauma blinders were lifted and the reality that we still have one surgery left was, all of the sudden, upon my head and heart again.  Of course I knew the Fontan was necessary.  I guess I just thought that after almost a year of not HAVING to be at the hospital or think about surgeries, that somehow we had escaped the realm of HLHS.  We've been on cruise control for so long, exactly one year to the date on Sunday.  Earlier this week, I was planning our one year post-Glenn party for Rosie, so the reality of hearing this news, which is still positive, just caught me off guard.

I have every reason to believe that she will recover from the Fontan just as well as she did from her first two open heart surgeries.  Just as her little body prepares to go through it again, we, too, must prepare our hearts and minds to be her strength and hope.

FYI: She was AWESOME today for every test she had to go through.  Bloodwork, EKG, SAT's, and an Echo.  Rosie, YOU ROCK SWEETIE!

Pissed for 10 Seconds: On Remembering the Difficult Days

Recently, I was reminded of the unique position of where I've been over the last 19 months. That's just what happens when you and your family have gone through one of these survival periods.

I havn't had too many days in the last few years where I've actually been upset enough to get pissed. But the other day I saw a picture of Rosemary when she was about 8 months old, and I got a rush of adrenaline in the pit of my stomach. In that instant, I became incredibly pissed. I felt like the necessary insanity of that time had robbed me of the normalcy that I had craved for the first year of her life. I just don't remember much detail surrounding those months, and I can't recall having too many moments of not having to worry about Rosemary's life. It was so constant that everything else just kind of flew by in my rear view mirror. I felt like I missed having my baby, I blinked and now she's 19 months old. I know that particular part of having kids is normal, they all grow up too fast. But this has been a whirlwind.

I was so wedged between keeping her alive and trying to predict if each incident of vomiting, fever, SATs dropping or crying was going to be the next straw that broke the camel's back sending us rushing to the ER again. I just kept blindly walking on the treadmill of life. I was so fearful for her life from day to day, I had a very difficult time trying to stop and enjoy it. Of course this challenge has given our family an indescribable amount of wisdom, patience and positive perspective, but it was the most difficult time I've ever lived through. I don't know how, but we're probably some of the happiest people on the planet.

New moms don't get any sleep to begin with. When you throw placing NG tubes, insuflons, feeder bags and all of the medical tubing, tape and monitors in there...you kind of forget who you were before all of this began. You instantly jump into the role of surviving. Rosie and I have always had a crazy and beautiful understanding that living sometimes means that Mommy has to reluctantly inflict some discomfort...only to survive. She's been so forgiving. I don't know anyone as forgiving as her. I still have to place a feeding tube into her G-tube (button) 3 times a day, but it's better than the memories of placing an NG tube up her nose. Even at those times, her little eyes would look up at me with that look of "...I know why, but damnit Mommy!" She would sigh when it was over and then put her head on my shoulder. I probably cried more than she did. She's the strongest little kid. It's been almost a year since her second open-heart surgery, it was Leap Year and it was a blessing.

Rosemary is doing awesome. And finally, so am I. I'm here, typing, and not crying over not getting any sleep or having to sleep in the ER again. We're not there. We're here, and I'm grateful. I was only pissed for about a total of 10 seconds that day...and then Rosie literally knocked on my door, I opened it and saw those big, beautiful brown eyes staring up at me, and she smiled.

That pissed feeling in my gut went away in an instant.

If I have any advice or sentiments for anyone going through this right now, know that the hard times will become memories. Just do what you need to do for today, it's hard, but you will find your peace.

The Life Raft of Love: A Sibling's Perspective

I sat down last night to talk to my 10 year-old daughter, Shea, about her perspective on our journey with Rosemary. There have been so many times when emergencies have come up and we’ve had to leave either in an ambulance or in the van to get Rosemary to the ER. And Shea was left with one of our God sent neighbor’s, who would then wait with her for our family to arrive to take over the care for her and Lee until Drew could get home from the hospital.

So here are some of the things she had to say about Rosemary…

Shea regarding the first 911 incident:

“For a second, I felt like I didn’t know what was going on. All of the sudden, I see my neighbors and police in my house, and they were checking to see if my sister was all right. Is she okay, am I going to be okay, and where is she going to go? Then I saw my Mom crying, and I cried. I knew something ‘not so great’ was happening. I didn’t see my Mom for a week at a time, and that’s how it was for a while.”

Shea’s response to how it is now:

“I’m excited that I still have a baby sister looking at me, smiling, and shaking the baby gate when I get home from school. I also want to say that it’s my pleasure to watch her everyday when Mom needs to cook or go on her website or clean. Rosemary is finally playing and talking and able to run around with us. It’s so much more fun now!”

Having a sick baby means adjustment for everyone. Each member of our family has had to rearrange their building blocks. Staying in touch with every family member's feelings and needs is vital to surviving these times. We have a sturdy foundation so rebuilding has had less of a traumatic impact on us. We’ve really dealt with the last year and a half one day at a time and in real time. I still think to myself, “When did I have Rosemary?” I feel like I blinked, and here we are. Nevertheless, change is constant and being flexible and having the ability to flow with the times has made all the difference in keeping our heads above water, and love has been the constant life saver.

The Gift That Keeps On Giving...

Rosemary has turned another corner in her awareness and expression of her love and joy for others. Just in the last 3 days, she has changed the way she gives her Daddy a hug. She grabs onto Drew's neck and gives him the "Big Squeeze Hug", the one where you hang on and give that little "...mmmmmm..." sound. She loves her Daddy. This year for his birthday, he got the gift that keeps on giving. Rosemary.

Children Teach Us Well: Hope During Transformation

Today being Martin Luther King, Jr.'s birthday, my entire family sat down in front of CNN and watched the speech 3 times in a row. We want our children to know the significance of what happened in August of 1963 and how it transformed this nation. We face new problems today, but keeping an ear on his message from yesterday is quite valuable. The inauguration of Obama exemplifies the dream of MLK. We can see the work that has been done, but let us not forget the work that we must continue to do in this very trying time for our nation. His message of union was strong and the need for civil service has been reborn through the eyes of two men from two different generations.

People are going to need to begin to answer the call for duty again. We need to support one another from the roots, up. That is where I feel I gained the beginning for my personal call of duty today. Whether it be here in support of other parents with children afflicted by HLHS, or a Girl Scout group that needs a mom to chaperone a cookie sale at the mall, I, too, need to increase my level of service to my neighbors. The people of this great nation are going to need to extend their hands and their hearts more than ever before. I am going to keep trying here on this blog, to help other parents stay connected any way I can. Because sharing the burden is lifting some burden. I am eager to do whatever I can to help.

My oldest daughter, Shea, who is now 10, was inspired today by Dr. Martin Luther King, Jr., a man from a different generation. As we watched President Obama and Michelle at a local service day in Washington DC, and witnessed their candor and genuine spirit of hope for this country, we found ourselves profoundly inspired. The enthusiasm that a group of cheerleaders had as they cheered in spirit with the new President, was so moving to me. The excitement was amazing! And I believe that the legacy of Abraham Lincoln, the message from MLK and the spirit of this country are aligning to send President Obama into this presidency with a message of hope, union and a new definition for work.

We all have work to do. Let's start at home with our children, and with ourselves. And extend ourselves, one hand and one heart at a time.

Love and hope can be felt at any age...

Batter up!

As a parent of one of these little babies, I can tell you that it is a tough ride, but where there is love, there is success. Because even the ultimate fate of our children, whether it be to live or to pass, becomes it's own gift of love and wisdom either way, even when it's painful. I never want to experience the painful side of fate, but that's not up to me to decide.  Learning in this life is constant. And love shouldn't fall too far behind. We try to do a lot of both.

I had an exciting moment just a second ago when I realized that we're approaching the phase in Rosie's life where she is beginning to actually start talking and communicating her thoughts. She has been saying more words every day, a sign of true progress for her.

As I recall what it was like when my first two children began to talk, it occurred to me that being an observer of this gradually evolving event is really quite amazing...kind of like a God given perk for being a parent. It also made me realize that we're in the middle of a great opportunity, right now, in how we teach and lead our children. It gave me a motivational booster shot. I find myself re-inspired to do better in just about everything in my life. Educating, mothering, understanding, learning, loving. We, as parents--or anyone else who has influence on children, have a great responsibility as leaders. Children will follow with our examples.

In such a historical time in our nation's history, from this Presidential Inauguration, the recent "Miracle on the Hudson", all the way to raising Rosemary, faith and hope have never been more important to me in my life.

There is something out there in the winds of change that I hope brings America back into the Hands of the Heartland, US! I care about this country, I care about its people. We are all making a difference in each other's lives and I truly hope for President Obama's success.

With great love there is great humility. Here's to hope and faith. Knock it out of the park, Obama!

Miracles do happen...



Send a message of Hope to President Obama...

Don't Think About It

I realized today that a lot of my success in dealing with raising a child with HLHS is about persistent positivity.  You have today.  Don't worry about what would have happened or could have happened.  What it is, is exactly what it is.  Live in it, and try to put a smile on your child's face because that's what they need...your smiles, your uplifting spirit, your ability to provide hope and happiness.  That's all.

Enjoy the smiles you get, induce a few.  It helps when nothing else will.  There aren't enough words to describe how difficult this journey can be, but hanging on and hoping for the better days have brought air, light and smiles to our souls and faces.

Happy Friday.

The Corner

We feel like we just turned a corner with Rosemary.  Today was the first day that she kept her mini Feeder Back Pack (FBP) on and walked around by herself...the entire time!  I was so shocked.  Her older sister, Shea, was especially excited because she had just recently gotten to know what it is like to be on BP (Bag Patrol) for an hour.

For the last 18 months, Rosemary has been on either an NG tube or a G tube.  Which means when she needs to eat, every 4 hours, we have to follow her around for an hour and hold her FBP while she strolls about and plays.  Have you ever followed right behind an 18 month old for a solid hour? Three times a day? For 18 months straight? With two other kids?

It's been such a slow and tedious process to try to wean her from the G tube.  She can only consume so much volume of 30 calorie formula within a certain amount of time.  Too much, it won't stay down.  Feed her regular foods that sometimes stimulate her natural gag reflex, she vomits.  She does eat food for taste but she becomes disinterested quickly.  It's been getting better though and she IS making progress.  

She smiles and laughs the majority of the day, which is probably a better indicator for her health than a SAT monitor.  And she has a family who will love her all the days of our lives.

So here's to turning the corner, Rosemary.  Keep truckin'.

Dance Is Wonderful

The evolution of our style is even better...

This guy has a point...we all danced like awesome weirdos at some point in our lives. Enjoy!

Write It Down

I just found the journal that I had kept while I was in the hospital when Rosemary was not in her finest hour. It brought me to tears because I could barely remember writing those these down, but stranger than that was how I have forgotten that those feelings were there. It has obviously been a while since I entered the tunnel.

I found my early writings that began listing Rosie's events in chronological order. So as I post here, hopefully on a daily basis, I will also be logging in the events that played out while Rosemary was in the hospital and the last 18 months of her life.

I've decided to create an online diary, if you will, my book, about this experience from the beginning to the present.

Thanks again for stopping in. Here's a little something that just brightened up my day, and made me realize that when I was in the hospital with Rosemary for a month and a half, I never thought I'd get here, I never dreamed of getting here because I couldn't be anywhere else but there. So enjoy.