Totally Over It

We were discharged on Tuesday, November 10, after a 5 1/2 week stay for Rosie's open heart surgery. Free at last, or so we thought. Being in a hospital has its advantages. One of the disadvantages is that you are constantly exposed to germs, and Rosemary caught something just as we were on our way out. She spiked a 102.5 fever Wednesday morning. Desperate to stay out of the hospital, I called the Nurse Practioners at the hospital to see if I could manage the temperature from home. She responded well to Ibuprofen that day, so we avoided taking her in. Thursday morning, however, she spiked a 102.3 fever again. So into the cardiology clinic we came.

Being that it is cold and flu season, there were no beds available anywhere in the hospital. They said we could go to the ER and wait, or go home and wait for a call. We decided to go home. No beds became available for Rosie by morning so we opted to go to the ER. She was breathing faster, looking bluer than usual and it was obvious that she needed care. So off we went, back to Children's National Medical Center in DC.

Luckily, it was early, no one was in the ER and we went straight to a room, straight onto oxygen and Rosie finally got some rest. Her oxygen saturation levels were in the 40s and 50s when we got there, it was obvious she was air hungry and couldn't fight whatever she had caught on her own. It has been a long haul, it's not over yet. I'm totally over it. I'm tired of Rosie having to fight, tired of being here in the hospital, simply tired of it all. But as any parent knows, you do what you must do, when you have to do it, and that's it. Still, I'm totally over it. Mother Therasa, send me some patience!

Recovery takes time. I'm learning that a new level of "get over yourself" is required every day.

One Week

It's Monday morning, October...26th. I had to double check on the computer because I have no idea what the days and dates are when I'm here in the hospital. Rosie had her 3rd open heart surgery on October 2nd. Since then, it has been a constant roller coaster for her. This last week has been eventful. After a series of days of Rosemary's oxygen stauration levels dropping and daily x-rays not really showing anything, the last of the x-rays revealed a developing pleural efussion, or fluid around the lungs. So last Monday they decided to place what are called, "Pigtails" in the right side of her chest. These drainage tubes can last anywhere from a few days to a few weeks or even months. On Tuesday, her morning x-ray showed a developing pleural effusion on her left side, so they placed a pigtail in her left chest, as well. On Wednesday, I was so sick and tired of the pokes and prodding that I asked for a PIC line (central line) to be placed into her chest through a vein in her left arm to forego anymore pain associated with blood draws and IVs. This would enable them to draw blood and administer IV meds and fluids as needed through one location. She had gone through 3 IVs in 5 days over the weekend, so she was done, and so was I.

These pigtails can sometimes become clogged or kinked, so they often need to be flushed or adjusted. Thursday evening revealed a kink in her right chest tube and a twist in her left, so the cardiovascular surgeon fellow came in to unkink the lines and eventually pull off 230cc from her right lung, and 170cc off of her left. Friday, more of the same. By Saturday, her pain was becoming hard to manage so they put her on scheduled doses of morphine, on top of the oxicodone and torodol she was getting. And last night, Sunday night, the nurses noticed the tubes were not draining as they should be. As they attempted to drain and pull off more fluid, the right chest tube broke away from the drainage port and the entire tube had to be pulled out of her chest. Doctors said that this happens all of the time, all over the world, it's just the nature of chest tubes. I'll be writing to the manufacturer later...once I've got nothing better to do.

So today, we are re-evaluating the need for another chest tube and the placement of a PCA, Patient Controlled Anesthesia. Rosie has seen so much pain medication over the last 2 years of her life that the normal doses of drugs do little to nothing to help her with the pain. Hence, the need for a little more than normal on the side of narcotics. I'll be meeting with the Pain Management Team today.

All of this to say, it has been one heck of a week. Just one of the three since we've been here. I can tell you this, I am the luckiest Mother alive. To have my baby girl being taken care of in a state of the art facility, to have my sister Leslie's family watching over my other two children, to have a loving partner who supports me, to feel the love all around me from two families that never stop believing in Rosie and in us...I am very lucky.

My cousin Kristen works in the ER downstairs. This morning, she brought me a load of gifts from my family who had gathered at my Aunt Jackie's house to celebrate a Steeler Sunday. The gift bags were hoisted onto an antibacterialized gurny, it looked ridiculously silly, I got a good laugh. It felt like Christmas morning. My sister, my cousins, my Aunts and Uncles, collaborated a host of Halloween gifts, costumes for Rosie, inspirational books, clean clothes, a beautifully hand made card from my Shea-signed by all-and food and more love than you can imagine, all put together so that I could feel a little bit of home while I'm here. After she left, I sat there and cried.

All of this insanity that comes with being here, I know it will end. One day, maybe in one more week, I'll remember this time and not feel anything but relief and the same love that I feel right now. Thank you, family. Thank you for bringing me home again.

Whatever it is that makes you feel at home...harness it. It's what you got!
Here's a musical place that takes me home too...(click on "Home")...
http://www.veltzmusic.com/Home_Page.php

A Walk in Their Park...

I looked out the window for a second while reading to Rosie and Lee and making puppets kiss their noses, when I realized just how peaceful we are right now.  I felt lucky again today.  It was really nice.

I've been up and down over the last few weeks just mentally preparing for the next phase of Rosemary's care and all that it entails for our family.  We're 3 days away from her next heart catheterization which will help us determine how long we have until the next surgery.  Yesterday, I had a unique opportunity to briefly reach out to another family with an incredible story who has just gone through one of the most difficult and challenging times in their lives.

While at the hospital taking care of Rosemary's pre-cath blood work, I ran into a team of her cardiologists while in the lobby.  I went on my way but when I returned an hour later, I found that they were all standing on a stage behind a young girl, her family and a man in a yellow T-shirt. After a few seconds, I realized the man in the yellow T-shirt was Yankee player, Brett Gardner.  It didn't take another minute to realize that the young girl was his lucky charm from last month's game which ended in one of the Yankee's most exciting inside the park home runs ever. Drew and I watch every game, and when we heard the story about Alyssa Esposito 's heart and the bracelet, we were both very moved.  Yesterday, I had a chance to reencounter the joy of knowing that she had gotten her heart and a chance for a better quality of life.  Alyssa received her heart transplant at the same hospital where Rosie receives her care, and from much of the same Cardiology Team.  They're amazing people and extraordinary professionals.

To actually see her and doing so well just 4 weeks after a heart transplant was immensely inspiring and I found myself inside a new sense of hope.  I felt honored to have the opportunity to speak briefly with her Mother.  Knowing what it 's like to be inside of the vulnerability surrounding heart surgeries, she had an amazing sense of peace in her eyes and I presume those eyes have seen much more than I have seen.  She conveyed her faith in the hospital, the doctors and staff and Alyssa's great strength and perseverance.  Whether she knew it or not, she gave me the greatest gift, a heightened sense of hope.  She's been on her journey with Alyssa for 18 years.  I barely have 2 years under my belt with Rosie.  It was perfect timing for me.  It felt like a little booster shot for this next surgery.  

I was gratefully humbled and given a new sense of encouragement and air to our journey.  Thank you to the Esposito Family for sharing your lives and your story.  You just filled up my gas tank for this ride.

The Horse

Some things never change.  No matter how many times you've been to the hospital or the emergency room, the feeling of having to be there never changes.  In my head, I'm just standing there shaking my head...in reality, I'm just standing there shaking my head.

I usually get a little overwhelmed at the initial realization that I have to go and why I'm going. My little Rosie basically has half of a heart and when I don't really know what's going on with her, I initially freak out a little.  I wasted about 3 minutes rumbling around trying to get a bag packed for both of us, not knowing if I should even spend the time to pack a bag, but really knowing that I should because you just never know if its one night or one week.  Once she started vomiting again, I got my ass in gear and both of us out the door.

I always think I'm going to be a rock throughout the whole thing and then I break down. Whether it be on the way there, anticipating what I will find out or when I actually get to the ER and see that there are 50 sick kids wearing masks because they might have the swine flu  and I realize that I can't protect her from that either. There's only so much worry that's worth worrying about.

This little trip reminded me of how fragile she still is and how much control over this situation I really don't have.  At some point over the last 2 years, I've learned how to make peace with it. I've come to realize that my energy is better spent making her smile or chasing her endlessly around the house.  All I can do is love my little girl and do my best to make the right decisions for her.  You do what you can, and take care of business when you have to.  Rosie is really the one who takes care of business on these trips.  Of course, she puts me to shame!

You can lose yourself in the seemingly endless what ifs, but in the end, just get yourself back up on the horse, and keep riding.  

Love IS all you need.  Saddle up.

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.

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.