tag:blogger.com,1999:blog-25279742550559664402011-11-27T16:52:59.680-08:00Raising a child with HLHS can be one of the most frightening places for parents and families to live. My hope is to share some of my personal experiences living with and loving the life of my 3 year old daughter Rosemary. This blog will provide some insight into what it has been like for me and our family to go through 4 open heart surgeries, lengthy hospital stays and life outside of the hospital. For more information about HLHS, helpful resources and our story, CLICK below...Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.comBlogger291100tag:blogger.com,1999:blog-2527974255055966440.post-79472920507528998032010-10-22T13:17:00.000-07:002010-10-22T20:16:48.148-07:00

Rosemary's 5th GJ tube popped out again today. I cannot, for the life of me, understand how it backed itself out...again. The balloons that are designed to keep these tubes in place are deflating, allowing the tube to slip out of her belly. Is anyone out there with a feeding tube kid having these GJ issues?I was getting my hair cut today when I got the call from my daycare provider. I heard Rosie

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com2tag:blogger.com,1999:blog-2527974255055966440.post-22539602617958647672010-07-18T05:46:00.000-07:002010-07-18T06:53:29.689-07:00

July 12, 2010Four months ago, I couldn't imagine what life would be like outside of the hospital. Rosemary had her Fontan procedure on October 2, 2009 and her heart and body rejected it. She lived with pleural effusions for 6 months as we recycled ourselves in and out of Children's Hospital in DC. We were living day to day, sometimes moment to moment. I couldn't look one day down the road. At one

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com1tag:blogger.com,1999:blog-2527974255055966440.post-41802148187945421442010-05-10T06:15:00.000-07:002010-05-10T07:01:38.582-07:00

Being home has provided Rosemary with the absolute best medicine, freedom. She is running and playing and acting like a toddler again. Life has definitely been good to us. We've been given a new opportunity at life with Rosie and we have so many people to thank for that.I want to take this oppotunity to say thank you, to every single person who has thought of us, prayed the life back into Rosie,

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com2tag:blogger.com,1999:blog-2527974255055966440.post-27836551490540974912010-04-13T06:31:00.000-07:002010-04-13T10:26:36.126-07:00

Well...she did it. Rosemary graduated to HOME! It seriously felt like her college graduation when we left the hospital the night of March 30, 2010. Since we've been home, she has remet so many of her physical milestones and is back to herself mentally and emotionally, which are the biggest reasons for her daily triumphs. The first day that we were home, it was absolutely gorgeous. The sun was

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com1tag:blogger.com,1999:blog-2527974255055966440.post-10366457013965459052010-03-13T19:54:00.000-08:002010-03-13T21:09:58.213-08:00

This week has changed my life forever, it's the tip of my new iceberg. As I sit here in the CICU thinking about all that had to be processed from Monday until now, I understand a little more what my life's purpose is and I am eternally grateful. This last month, Rosie's deteriorating condition forced me to accept that a lot things were out of my control. As a parent of a child who is very sick,

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com1tag:blogger.com,1999:blog-2527974255055966440.post-65778786034059624372010-03-10T17:17:00.000-08:002010-03-10T20:40:29.953-08:00

I have a new surge of hope today because we have received some news that we DO have options for Rosie that DO NOT include heart transplantation at this point. We can breathe again. Her surgeon here in DC met with me today and explained that he didn't feel that she would do well with a transplant right now and that reverting her back to her Hemi-Fontan may give her the relief and benefits that she

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com1tag:blogger.com,1999:blog-2527974255055966440.post-14313674180546558832010-03-08T17:07:00.000-08:002010-03-08T20:00:48.616-08:00

My day started knowing that at 4pm this afternoon, the cardiology case conference would be discussing Rosemary's failing heart. This has been the most difficult week of my life. Rosemary's little heart is not working so great, she is experiencing Fontan failure, this was the supposed to be her last repair. She has been on TPN nutrition for about 6 weeks, food through an IV, to rule out her

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com5tag:blogger.com,1999:blog-2527974255055966440.post-57330297299133856302010-01-15T19:50:00.000-08:002010-03-06T19:51:30.946-08:00

These are 2 late night blogs that I did not get to post for various reasons. The posting date should have originally been January 15th and then February 5th, however, here they are...This ever evolving roller coaster with Rosemary has left me feeling incredibly fortunate to have her at my side and at the same time, ridiculous for ever complaining about anything that has gone wrong.The next

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com1tag:blogger.com,1999:blog-2527974255055966440.post-9060479165519741492009-11-14T10:13:00.001-08:002009-11-14T10:29:07.238-08:00

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

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com1tag:blogger.com,1999:blog-2527974255055966440.post-89330573302313934962009-10-26T05:54:00.000-07:002009-10-26T11:54:02.940-07:00

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

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com1tag:blogger.com,1999:blog-2527974255055966440.post-8454996153412714882009-06-13T11:09:00.000-07:002009-06-13T13:18:26.235-07:00

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

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com0tag:blogger.com,1999:blog-2527974255055966440.post-30255359417987816382009-05-23T09:05:00.000-07:002009-05-23T09:57:08.219-07:00

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

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com0tag:blogger.com,1999:blog-2527974255055966440.post-1469786506144716252009-02-26T13:47:00.000-08:002009-03-20T10:40:54.932-07:00

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

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com0tag:blogger.com,1999:blog-2527974255055966440.post-66781872695425314012009-02-06T19:22:00.000-08:002009-02-26T13:45:37.504-08:00

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

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com1tag:blogger.com,1999:blog-2527974255055966440.post-74411587625221663772009-01-26T08:06:00.000-08:002009-02-26T13:46:24.426-08:00

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

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com0tag:blogger.com,1999:blog-2527974255055966440.post-74041890700110479702009-01-23T16:02:00.000-08:002009-01-26T08:14:21.428-08:00

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.

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com0tag:blogger.com,1999:blog-2527974255055966440.post-76865091322732987312009-01-19T10:14:00.000-08:002009-02-26T13:47:17.823-08:00

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

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com0tag:blogger.com,1999:blog-2527974255055966440.post-18849708272783742062009-01-18T08:34:00.001-08:002009-02-27T17:57:13.543-08:00

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

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com0tag:blogger.com,1999:blog-2527974255055966440.post-24191382121525386402009-01-16T14:34:00.000-08:002009-01-16T15:57:02.644-08:00

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

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com0tag:blogger.com,1999:blog-2527974255055966440.post-20830508491317942882009-01-12T20:38:00.000-08:002009-01-13T09:44:01.545-08:00

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

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com1tag:blogger.com,1999:blog-2527974255055966440.post-36972800816658631102009-01-12T05:21:00.000-08:002009-01-12T05:23:27.324-08:00

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!

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com0tag:blogger.com,1999:blog-2527974255055966440.post-49125201969416025362009-01-10T18:48:00.000-08:002009-01-11T16:20:38.508-08:00

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

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com0tag:blogger.com,1999:blog-2527974255055966440.post-65701831953692434602009-01-06T16:43:00.000-08:002009-01-06T19:45:56.504-08:00

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

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com0tag:blogger.com,1999:blog-2527974255055966440.post-46944357064291645992009-01-05T19:09:00.000-08:002009-01-06T15:21:54.211-08:00

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,

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com0tag:blogger.com,1999:blog-2527974255055966440.post-70361581504865162492008-10-27T11:20:00.001-07:002008-10-27T11:54:38.824-07:00

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

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com1tag:blogger.com,1999:blog-2527974255055966440.post-44079435718430029992008-08-17T10:50:00.000-07:002008-10-27T11:18:22.904-07:00

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

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com0tag:blogger.com,1999:blog-2527974255055966440.post-76853728463181631502008-06-24T11:02:00.000-07:002008-06-24T11:14:44.122-07:00

When you have a good day, it's really an incredible day.  

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com0tag:blogger.com,1999:blog-2527974255055966440.post-62682323127510895602008-06-12T19:31:00.000-07:002009-01-06T16:25:26.870-08:00

When you hear about someone's experience with a sick infant or child, your heart breaks and all you think is, "I don't know what I would do."  I remember when I heard the doctor say, "Your baby has something called Hypoplastic Left Heart Syndrome."  I thought, "What the hell is that?"  I was devastated because I understood what they were explaining about the physiology and anatomy of her heart,

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com0tag:blogger.com,1999:blog-2527974255055966440.post-38461059455691149922008-05-30T20:24:00.000-07:002008-06-12T18:09:07.145-07:00

Today began with another episode of changing Rosemary's NG tube.  It's not a fun experience for either of us.  Her 11 month birthday was yesterday and I had one of those moments where you can hear the "V8 plunk." She's had a tube in her nose, taped to her face for 11 months. We've been avoiding getting a G tube placed into her stomach for a while.  Her cardiologist recommended it when she was

Momahttp://www.blogger.com/profile/14890580105726595398noreply@blogger.com0