Well my mom has been pressuring me to "journal" what goes on in my life involving Eli. I don't know how good I will be at this so I will give it a shot and see how it goes. I guess we'll start from the beginning.
Monday Feburary 7th., 2011. The day I had been looking forward to for about 4 weeks. We were on our way to finding out the sex of our baby. I scheduled the earliest possible appointment because I just knew I couldn't sit around all day waiting anxiously. I laid down on the table, convinced I was having a girl, not knowing the next few minutes would change my life forever.
Within a few seconds of the ultrasound tech scanning my belly, I knew what I saw was little boy parts. I gasped and instantly freaked out (all fairly quietly) I was wrong! For some odd reason, I had been scared to have a boy but now having to embrace it. Ok fine, a boy it is. I could get used to it, after all I do have a brother and my husband has 4 brothers. The tech finishes up and gives us a bunch of fun pictures and tells us to wait for the doctor so he can do his own scan and talk to us. This is where our lives changed forever....
Doctor did his scan quietly, paying extra close attention to baby boys chest area. He said he believed the baby had some sort of heart deformity and wanted us to see a pediactric cardiologist ASAP. He warned us that often times babies with heart problems are also born with Down Syndrome or other types of problems. He must have mentioned DS about 4 times in a matter of minutes, adding even more panic to my already shocked brain. Oh man, what an overload this appointment was turning out to be, geez I only wanted to know the babies sex! Well they were so serious about seeing the ped. cardio. that they called and scheduled the appointment before I even left the ultrasound room. I was to be there the next day at noon. We were sent on our way to share the good news that we were having a boy. I got home and Rafe went off to work, I must have sat in silence for about an hour just going through everything in my head. What would our lives turn out to be, where do we go from here, are we excited and sad all at the same time???
Noon the next day, Dr. Gulecyuz (gul-uch-es) confirms baby boy has a heart problem. At this time he couldn't pinpoint it because baby was moving so much. He said it was a possibilty of a few different things, coarctation of the aorta, hypoplastic left heart syndrome (HLHS), ventricular septal defect (VSD). He drew my mom and I wonderful pictures and left us with a good outlook. He is a wonderful doctor and helped ease our minds and hearts. He would continue to monitor the baby every 2 to 4 weeks in hopes that the left ventrical would catch up to the right.
Tuesday June 7, 2011... My 3rd wedding anniversary and a busy day with doctors appointments. My mom and I started the morning out with my last appointment with Dr.G since he would be out of town until the day after my expected due date of June 27th. He confirmed that the left side had not caught up with the right side but at least had continued to keep up at half the size. We were already aware that baby would be having heart surgery after birth, we just weren't sure which one. Dr. Ilbawi the heart surgeon's team would be making that decision after baby is born. Before I left Dr. G's office he told me he was convinced I would go into labor while he was gone on a vacation and he really wanted me to be late on delivering. I told him not to jinx me because I wanted him to be part of the decision making on babies surgery.
Thursday June 9, 2011... Rafe had just left for work when I suddenly had to the urge to go pee, except when I stood up I realized that urge was not from my bladder. I would have to say that was one of the scariest moments of my life. Sorry for the horrible details coming but blood was dripping down my leg, had soaked my underwear and was all over the floor. I was sure I had miscarried and was heart broken as I am crying hysterically while sitting on the toilet watching the water turn red. I had to stop and control my crying so I could scream for my brother to help me, he thankfully fell asleep in the living room so was able to hear me. I then realized I felt the baby move and got a quick sense of relief, baby was still alive. I called Rafe really fast and told him head straight for the hospital, my mom and I would be there shortly. I then called my mom hysterically crying and told her to get to my house fast, I was bleeding. I then called my ob/gyn who I had forgotten was also out of town then. Fantastic!!! I finally got through to his back-up who would meet us at Hinsdale Hospital. David was there to keep me calm, thank god for that. We got to the hospital within 30 minutes, during rush hour traffic and a horrible thunderstorm. I then walked from the ER up to Labor and Delievery, uh why are you letting a pregnant woman walk after I tell them I am bleeding!
A few tests and exams later, we find out my placenta has torn and baby needs to come out. They wanted to schedule it for 7pm, the ob said no way this baby has heart problems, he needs out now! I panicked again because I went from having a few hours to think about it to having about 10 minutes. I was surprisingly calm as they wheeled me down the hall to the operating room, I was sure things would go smoothly. The spinal was not pleasant but being numb was great, then I hear "incision is made". Uh where is my husband??? Did they forget I was married and wanted him in there? Thankfully he was in there within a minute and our beautiful son Eli Randall was born two minutes later at 4:19pm. He let out a wonderfully loud cry and I was in tears, happy tears of course. The baby I had always dreamed about was finally here and he was all mine, and god was he gorgeous. A quick kiss and he was off to the NICU to be put on oxygen and have his echocardiogram done.
The next few hours were a blur as I was high as a kite on morphine. All I know my face itched like crazy and my family was standing around me laughing at me. We got word that Eli would need to transported that night to Hope Childrens Hospital, about 25 minutes away from the hospital I would have to be at for the next few days as I recovered. The cardiologist (someone I had never met) also broke the news that Eli did in fact have hypo-plastic left heart syndrome (HLHS) and would need to have the norwood procedure done within a week of birth. My heart sunk, but I was willing to do whatever it took to save my son. An hour later I had to say goodbye to Eli for a few days until I got out of the hospital, the longest 3 days of my life. I cried myself to sleep every night because I so desperately wanted to be there for and with my little guy.
I finally got to him on Sunday the 12th. I was so happy to see him and yet scared to walk into his room at the same time. No one wants to see their loved one all hooked up to monitors and sedated, and this was my little baby. I kissed him everywhere I could reach, he was in this plastic square box/bed. He couldn't be moved since he was on the ventilator and they didn't want to hurt his throat. I spent hours just starring at him and loved every minute of it. I would continue to do this everyday until surgery day. I got to hold him for the first time on that Wednesday, I couldn't move him much but I at least got to feel him in my arms and against my body. It was great and would have to do for the time being. We also did a bedside baptism before his surgery to, the same priest who had married Rafe and I three years earlier agreed to come out and do that for Eli.
Thursday June 16th....The big day! Eli's surgery was scheduled for 7:30am. Rafe and I arrived at the hospital around 5am to spend as much time as possible with him before then. I probably cried for those two hours straight just worrying about all of the possibilities. Around 7:15 all of the sudden the room was filled with nurses, transport people, doctors , etc. The fear was setting in and I couldn't stop the tears from flowing. I held onto his hand until he was wheeled out of his room and followed very closely behind them as he was wheeled down the hall. They stopped and let Rafe and I kiss him before he was taken into surgery, talk about gut wrenching. We were told we would get updates every hour and a half to two hours, and they were very good about staying true to that. Every update was wonderful and eased us a little bit more. I was happy to have both of my parents there to comfort me, I must admit I was pretty horrible that day. I felt like I was the only one in the world going through such a horrible thing and no one understood. No one would get it as I sat there in tears, who is this girl and why is she so sad? When we got the all clear, my world brightened up and the adrenaline wore off. My little Eli made it through the surgery wonderfully, my mind could now relax for the moment.
To be continued....(Eli is crying)
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