It started with the milk jug. As I reached for the milk yesterday I noticed the date stamped on the side: March 11. In big, bold, black letters the date slapped me in the face. It's funny how I can or can't remember some dates and this is one that is forever burnt in my memory. On March 11, it will be 16 years ago that my dad was killed in a car accident. I was only 16. I started thinking about how I have now lived half of my life without him.
I then started thinking about how March is here and it is notoriously bad for me. I thought for a while about March being here and how much loss and heartache this time of year brings. March is also when Ivan had not one but two of his open heart surgeries. Two years in a row.
I have had a heavy heart since the milk jug incident and I have been debating whether or not to write about it. It is pretty personal and I don't think that many people know what pain I have experienced in my life. After much thought and contemplation, I think I should write about it and share my experience. It is a HUGE part of who I am.
***I warn you that this post will be mostly sad and very honest.
If you want to hear of a mother's heartache and a courageous baby's struggle for his life, read on. If it hits too close to home, you may want to close out now.
Ivan was the most loved baby from the beginning. I had thought, planned and waited for so long to have this beautiful, perfect baby and now here he was. With a seemingly flawless pregnancy I gave birth to this baby that was perfect in every way. I endured nearly 24 hours of hard labor before having a C section. Even with the most horrible physical pain I have ever felt, I was in love the minute I heard him cry as he was born. He was a perfect baby, although he cried alot and had hard times sleeping. I though it was normal and smiled through dreary eyes and loved every minute of it.
Months passed by and he grew. He got bigger, stronger and smarter. At his four month checkup, for shots, the doctor noticed an irregular heart beat. Since he was unsure of the cause, he suggested that we take him to a cardiologist. I had been told that heart murmurs were fairly common and most babies will outgrow them. I took a very nonchalant approach to the situation and feared nothing really would be wrong. My assumptions were extremely understated.
A month later, I walked in to a doctor's office alone with Ivan. I was unprepared for what I was about to find out. After several tests and echo cardiograms, the doctor so gently told a young mother that her baby had a heart defect. ASD (Atrial Septum Defect) to be exact, which is hole in the atrium of the heart.
As tears welled in my eyes, I tried not to cry and be strong for the sweet, smiling face that was staring so innocently at me.
He seemed so healthy! How could this happen? The doctor must have seen me immediate blame myself as he comforted me in saying that this is something that could not be prevented and was a "fluke". He reassured me that it was not because of anything that Jake or I had done. He then went on to explain that Ivan's heart condition would be life threatening if not corrected. This would require surgery.
This moment would later prove to be the catalyst for a series of heartbreaking events. Ivan had his open heart surgery a month later. He was six months old. He was six months old and they had to put him on heart-lung by pass machine to breathe and circulate blood through his tiny body as the doctors so delicately repaired his little heart. The surgery was roughly 12 hours long and he came through with flying colors. His hole was fixed and all was well...so we thought.
His hospital stay was merely four days. Four days! He was able to come home on Christmas Eve to celebrate his first Christmas. I couldn't have been happier to bring my boy home after going through that and feeling that it was all behind us. I would soon find out I was very wrong and my happiness was premature.
In the weeks following his surgery, Ivan became very lethargic and started breathing strange. He would grunt alot and seemed to hold his breath. I thought it was strange but wasn't sure what to make of it.
Within a month, I noticed a orange-yellow color to parts of his face. In addition, he was having trouble holding food down. All of these things compiled and I took him to the doctor. (A general practice doctor that had very little experience with heart patients, as I would find out later.)
He examined Ivan and said that the vomiting and breathing problem must be a cold/flu bug and it would go away soon. He claimed the orange-yellow skin tone must be because Ivan loved carrots and sweet potatoes so much. He prescribed some suppositories for nausea and sent us on our way.
Within days, the vomiting was worse and he wasn't able to eat anything. At one point, he vomited and aspirated some and began to choke. He was with my mom at the time and she called 911. When I got there the EMT's were checking him out. He was fine but had everyone scared. The next day I took him for a checkup with the cardiologist. The date that would be burnt in my mind forever. March 1, 2005.
Again, I took Ivan to the doctor's appointment alone. (I later realized that never again will I take that child to a doctor by myself!) After several routine procedures, xrays, blood work and echo cardiogram, we waited to see the cardiologist. During the echo cardiogram, I remember the technician leaving the room for a moment and the doctor came back with her. The doctor grabbed the scope and finished the echo on his own. I thought it was strange that he would be doing it himself but figured he just wanted a really good look.
As we waited for the doctor to return I thought of all the questions I would ask him. I felt like the general practitioner had ignored or discounted my concerns and there was something very wrong with my baby.
Why was he throwing up every time he ate?
Why did he sleep so restlessly and cry so much?
Why was he so tired and just want to be held all day?
Why was he orange?
Why was he only 16 lbs at 8 months old?
My mind was racing with all the questions and I didn't want to forget anything. It was a hot office and I started to sweat a little. I remember holding Ivan as the doctor entered the room.
The next several hours are really a blur. I remember the doctor coming in and having a concerned look on his face. He laid Ivan's thick medical folder down on the examining table and smiled at him as he grabbed his little hand and shook it. He made some sweet baby talk conversation with Ivan and checked him over as he did it.
He then looked at me and told me the results of all the tests. He explained that they noticed a valve in Ivan's heart was not working properly. The valve was leaking blood into areas of the heart that was it was not supposed to. The blood was also backing up into his stomach, lungs, and liver. Ivan was experiencing congestive heart failure.
Those words Congestive Heart Failure pierced through me like a lightening bolt. I remember grabbing Ivan and squeezing him as tight as I could without hurting him. I shook and trembled and tears welled up in my eyes. As much as I tried to contain my sorrow, I couldn't.
I tried to listen as the doctor told me that Ivan needed to be admitted immediately and they would have to perform surgery right away to save him.
To save him.
The severity of the situation hit me and I felt like I would vomit. I remember trembling, crying and shaking as they asked if I had someone that I could call to be with us. I composed myself long enough to call Jake and tell him to get to the hospital ASAP. I'm sure he was equally as terrified as my voice and lack of ability to speak was hindering the information about what was going on.
As I hung up the phone, I recall a hoard of nurses surrounding me and them taking my hand to lead me back to Ivan.
As I passed another cardiologist in the hallway (we knew all of them by now) he asked if Ivan had been sick. I thought of all the signs, the symptoms and the lack of listening of the general practitioner.
I wanted to scream at him that "YES HE HAS BEEN SICK! THAT'S WHAT I'VE BEEN TRYING TO TELL EVERYONE BUT THEY'RE NOT LISTENING!!"
Instead I got the strength to nod my head and burst into a sob that would stop until I saw my husband.