The Clinical Care Coordinator came into the room and "welcomed" us to the High Risk Clinic at New York Presbyterian Hospital. She briefly described what was happening and that she would taking care of all the scheduling of appointments and directing our care. We were assured that we were in the best hands possible and that people from all over the country and the world came here for these types of procedures.
That should have made me feel better, but in that moment, I felt so much that I didn't know what I was feeling. Drew and I kept looking at each other and shaking our heads and crying. I remember pulling myself together a bit because I knew a little bit about human anatomy and physiology from college. As I tried to draw out the normal heart and the path of blood flow, I realized that right off the bat, I was a little ahead of this game. Not by much. As my pen began to draw what was happening to our baby's heart, my eyes welled up with tears and I couldn't see the paper. I dropped my pen once, picked it up and kept explaining what was going on through my tears. We were both filled with confusion, despair, helplessness, and sheer terror about what this meant for our baby's life. We went from overjoyed to terrified in a split second.
Over the next 48 hours, I found myself crying constantly, only pulling myself together long enough to help my 8 year old daughter with her homework or to feed my 10 month old. I had no time for grief. I knew what this meant in the short term, but I really had no idea what it meant for the rest of our lives.
I had an echocardiogram on the baby's heart within the next few days and I'll never forget it. Not because of what I was seeing on the monitor, but what I was seeing through my suddenly blurred vision. Out of no where, I was getting a glitter like effect in my central vision and I couldn't see things that were right in front of me. As we walked back to our baby's cardiologist's office, I remember it getting progressively worse. As we were sitting there listening to her explain what all of this meant, I recall not being able to see her face as she was speaking. When she asked what was wrong, I told her what was happening and she had me escorted down to the High Risk Clinic to get my blood pressure checked.
As it turns out, I was having something called Ocular Migraines. The optometrist that I saw told me that it happens sometimes when people are very stressed. You think? Anyways, this was just one more thing that helped me become more aware of myself. I had to let a lot of my personal struggles go so I could focus on what I could do immediately for this little miracle inside of me and my two other children.
Over the next several weeks, I underwent 3 additional echocardiograms to monitor the baby's heart. They clearly indicated HLHS. We met with our Genetics Counselor and went over family histories to rule out any hereditary heart problems or other anomalies in the family.
Around week 29 in my pregnancy, they began to notice that my amniotic fluid was beginning to drop. So instead of my once a month visits, I was there once a week for ultrasounds. For about 6 weeks toward the end, I was going in twice a week to get this checked. Finally, at my last ultrasound, the day before I was officially 38 weeks, my fluid reached the lowest it had ever been, a mere 4.2 on a scale of 0-25. So they wanted to induce me. It was no longer safe for my baby and they called Cardiology to let them know that we were going to move forward and it was time to call the NICU and give all of the appropriate specialists a heads up.
The only problem was that everyone and their sister was having a baby that night, so they sent me home until "a bed became available."
Friday, February 6, 2009
Saturday, January 17, 2009
The Beginning-March 15, 2007
Today, January 10, 2009
Dear Parents,
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,
Lori
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.
Dear Parents,
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,
Lori
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.
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