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.

The Day Our Gift Arrived

I received an email from someone who wanted to know what it was like the day that I had Rosemary. So as best as I can remember, this is what it was like.

(THE EXTENDED VERSION)

I was initially supposed to be induced because my amniotic fluid was getting too low to keep Rosemary inside safely. However, everyone and their sister was having a baby that day, so they sent me home and offered to call when a bed became available. What? I know, it seemed so unusual, but we left, quite anxious.

When we got home, Drew's family was waiting for us. We were all very excited and waiting for the call from the hospital. Hours passed and no call. So around 6pm, I called and said, "What's up?" About an hour later, the on-call doctor said to come in. And then it hit me. All of this excitement, and now I'm numb. I had no idea what to think or feel. Just as we were getting ready to leave, we looked out the window, and a double rainbow was shining above our house. I knew it was going to be alright.

After valet parking the van, we came to realize that we were only there to wait even longer. The moon must have been full and the barometric pressure just right, because woman after woman came waddling through the door with that look that only a woman within moments of delivery could have. Another woman had been told to come in for induction, so both of us and our husbands rolled our eyes simultaneously all night as our pole positions worsened.

Around 11pm, I was finally taken to a room. The usual monitors were attached and an IV was administered. For the next four hours, we sat in a holding room because there was still no delivery room for us. So I rested and waited. Without being induced, I surprisingly found myself in labor. Rosemary must have known, and wanted to begin her life. By 8 AM, I was in need of a delivery room. Once my epidural was in place, and comfort was mine, night-night. I napped for about an hour and a half, the nurse woke me up and said that I was ready. I woke Drew, and we were all ready for this day.

(CUT TO THE CHASE VERSION-from here down)

I was nervous, anxious, excited, desperately wanting a Future-Cam to tell me what was going to happen. As the doctor prepared the receiving table, I just wanted to hold Rosie, but they informed me that I may not be able to, depending on her status.

When she came out, she looked like a little blueberry, but she was crying and moving-and that's a good sign. I got to touch her and kiss her head, I told her that I loved her and then off she went to the temporary NICU. There, they connected her umbilical cord vessels to the necessary fluids and med lines, prostaglandins to keep the hole open between the top two atria.

About an hour later, we got to see her. They wheeled me in on my bed, Drew behind me, and we got to see her lying there peaceful, quiet, breathing and comfortable. She was a miracle. It was just as I'd seen on our NICU tour, except this time, the baby was ours.

I couldn't quite get over how I wasn't able to hold her, I didn't know when I would. I loved her, I was afraid of how much I loved her because I didn't want to lose her. I didn't know what to expect, if she would be alright, if she would make it. But I tried to never let that thought re-enter my head. That was a constant battle between preparedness and insanity. I made myself get over my fears so that I could hold onto some of my sanity and be there for her. My brain froze the part that recognized my own needs, and somehow, my maternal instincts kicked my ass and made me forget about myself. It was a good thing. The only way that I can describe that day in a nut shell, is that I entered the tunnel, looked toward the light and started walking. And from that day, to her 3rd day of life when she had her first open-heart surgery, to the month and a half hospital stay where we almost lost her, to this moment as she sleeps soundly in her crib, I just keep walking.

I'll never stop being amazed at how resilient this kid is. She's simply amazing.

I chose risk to have her, and chose love when she lived. That's where I've been ever since.

It's All Good

Rosemary is lifting our spirits and our volume of laughter every day.  She is so silly and full of life, such an inspiration.  When I think about what she's gone through, and how far she's come, I'm just so grateful that she can keep smiling and keep helping us enjoy this life. Certain events in life make you understand the things that are more and less important. Having a life full of love, happiness and peace is a gift that Rosemary has yet to know she has given. Some days you just need to sit back and smile.

Here's a little something that her Grandpa Ken and her Dad made.  Enjoy.

Here's to Good Health!

We're celebrating 4 months of good health for Rosie.  You can't ask for more than that.  I've realized that I'm just now catching up on some things that I wasn't able to do when Rosie was first born.  It's taken a while, but she's doing everything a normal 16 month old would do.

There are a lot of adjustments in the beginning.  You just have to learn not to expect anything to be "normal" right off the bat.  It takes a while for you and your family to adjust and understand what it means to have a child with this type of disability.

A reader asked to know a little more about our family adjustment.  Most of it is your ability to roll with the punches, and just do whatever it takes to get through each day.  There were many days filled with frustration, tears, and fears about the future.  The best thing is to have a supportive ear and to stay strong for your baby.  Do whatever it takes to stay positive and know that the ripples will fade and the waters will become smooth again.  

It's very easy to feel shattered by the overwhelming nature of what having a baby with HLHS actually means.  There's a long learning curve, it stretched out for about a year for us.  You learn how to deal with your ups and downs, you learn when to go tot the ER, you learn to trust your instincts.  That may be the most important thing of all.

Don't let go of your hopes and dreams of having a care free lifestyle.  Sometimes it takes a little longer than you think, but you'll get there.  If you have supportive people around you, you'll find that picking up the pieces is a lot easier.

Your focus should be on taking care of your baby, let your friends and family do the rest.  Do your best to find patience and learn that all of the uncertainties will work themselves out.  Surround yourself with love and don't try to be a one man band.  Rely on those that can help you.  

Remember that resisting the hardships of life can do more harm than good.  Be fluid like water.  It's peaceful enough to run your hands through, but strong enough to move even the biggest boulders from the river.  It's a journey, that's for sure.  Trust yourself and use the resources that you have.  Your boat will still float if you stop rowing, sometimes you have to drop the paddles and just sit.  It's harder than it sounds, but it's helpful.

Go Rosie!

So we did it.  We had Rosie's G-tube surgery July 21.  She's doing great.  Things have settled to the point where we're finally starting to look around and say, "Okay.  This is nice, Rosie is sort of on cruise control, curb your enthusiasm, but jump for joy."  I so wish I hadn't waited this long to do it.  There were some complications during her first 8-9 months that meant she was getting fed through an NG tube.  Then I convinced myself that I was going to be able to get her to eat the 1150 calories she needs a day to get her off the NGT, thus preventing this G-tube surgery.  It just didn't happen like that.  And believe me, after 2 cardiac surgeries, you don't want ANYONE or ANYTHING to poke or prod your little one any more than is medically necessary.  But, she had it done and she's so much happier now and making so much more progress.  It ultimately was a better decision for Rosemary. It feels a little more normal now.  She seriously looks just like any other baby.

Rosie took her first steps yesterday!  She is officially 13 months and 18 days.  She has been so much more playful and popping with personality since this last procedure.  I feel like everyday is exponential to the last.  Her Early Intervention doctor said that she is developing right around her age level, physically and cognitively.  And for what's she's been through this year and the amount of time she has spent in a hospital bed...she's doing amazingly well!  She couldn't get over how much she has progressed.  Hearing that is like a free gift.  

Life is good.