This site is dedicated to becoming a resource/break in the day for you. There's useful information and even entertainment for parents of HLHS Babies. It also provides a look into the real time journal entries that I wrote as a Mom with an HLHS baby fighting for her life in the hospital. There are links for real time updates on Rosemary through my BLOG and my website. I open up and welcome a forum for discussions by you, so you can share your stories, pictures and videos, and in turn, help someone else. Let's pay it forward, shall we?
I wanted this blog to be an informative link to the beginning of a group of organizations that are there to support you. And I also wanted to provide a look into both the fun and inspring side of the life of an HLHS baby, and to capture the good and the bad. It's always unfortunate when you have to be there in the hospital with your little one. Whether it's for the flu or surgery, let's face it, it's just never that great.
I'd like to offer you a place where you can relate and recharge, when you're ready. I didn't leave Rosemary's room for anything at first. Looking back, nap time is a good time to go and recharge your battery. Of course, only if you don't need a nap yourself.
Consider this page an eHug--if that term doesn't already exist. I simply hope this website provides an opportunity for air and life and enjoyment and peace.
Below is the beginning of my journal entries. I'll be posting them by date. Please visit the links to my other sites to enjoy the full on Rosiness.
Peace be with you,
March 15, 2007
I just found out that my baby has HLHS...now what?
I had gone in for my first Ultrasound. I expected that it would be routine. When the technician had finished her exam, she said, "Everything is there, it looks pretty good. Let me have the doctor take a look and then you should be on your way." Sounded good enough to summon up Drew to go get the van, so I gave the holler. When the tech re-entered the room, she said, "The doctor is going to take a look at you in another room so she can see it a little better." I didn't think that meant anything except that I had noticed that the bottom left chamber looked like its wall was significantly thicker than the rest of the heart. It was moving with the heart, so I didn't really worry about it, until that moment.
When I got to the other room, the doctor had come in and started her own ultrasound. She found the heart, and I instantly knew by the length of time the picture was up and the silence in the room, there was something terribly wrong.
After about 2 or 3 minutes, I heard the doctor telling the technician that one of the chambers looked “hypoplastic”.
I felt that nervous rush of adrenaline burst through my stomach and blurted out, “What’s the matter?”
The doctor prefaced her response with, “Let me start from the beginning.”
“What the hell is it? What, in God’s name, is wrong?"
I held back my frantic emotions and tears, sat back and listened.
She began to tell me that the left side of the baby’s heart was underdeveloped. There was a thick wall around the left ventricle and although it was moving, it was only moving with the heart and not actually contracting the way that it should. “What does this mean for the baby?” I asked.
She replied, “I’ll have Alice speak with you, she’s the Clinical Coordinator Social Worker for the High Risk Clinic. You’ll be seen here instead of your regular doctor’s office and the Cardiologist who takes your case will be able to better explain to you what this all means and all of the options that you have.”
“Options. Right.” I said.
Two other doctors came into the room, including the Attending Physician in Ultrasound. They both confirmed the first doctor’s findings. My baby had a condition called Hypoplastic Left Heart Syndrome or HLHS. They said on a scale of 1 to 10 in severity, HLHS was a 10. They continued to tell me that it was a nasty disease with about a 70% survival rate. That surely was not the news I had hoped to hear on that day.
In the buzzing and numb state that I was in, I called Drew and told him to repark the van, to come upstairs because something was wrong. I had just calmed myself down enough to make the call and as soon as I spoke to him, I broke down in tears.
A million questions came rushing into our heads, were we asking the right questions, what do we ask, I didn’t know when it would end.