Xavier has been a little hesitant to take his first unassisted steps, but tonight, he DID IT! Yay Xavier! It must have been the bites of chocolate cupcake he ate at his friend Ella's birthday party today that gave him the extra boost he needed...haha!
Saturday, July 30, 2011
a VERY special day
We were so excited to celebrate Xavier's first birthday! I wanted to do something special, since he had been through so much during the first year...he deserved something special. We invited his playgroup friends, in addition to a few of our close San Diego friends. An extra special treat came when we found out Titi Brandi and Cousin Solana would be there for the party!
I won't lie, it was a little stressful. We had to wait until Xavier was in bed to do most of the decorating and finish his cake so it was a very late night. It was worth it though. Here is the birthday cake that I made for him. It was my first time taking on a cake like this, so I was pretty proud about how it turned out!
I think Xavier was a little overwhelmed on the day of his party. He refused to take a nap before his party started...there was too much activity with Matt, Brandi, and I trying to finish all the last minute details. Then he didn't quite seem what to make of having so many people over to the house. Even though he was a little crabby, he was still the CUTEST birthday boy, ever!
And when it came to eating birthday cake, he suddenly became a little more interested...haha!
A huge thank-you to everyone that helped us celebrate this wonderful day!
Thursday, July 28, 2011
born with a broken heart
It has been over a year now since Xavier was born. I kept intending to start this blog, yet never did. I think, initially, I needed the time to come to terms with my new life before attempting to share my experience with anyone else. Then, as Xavier got older, I just needed the time to sit down long enough to write it out. Now, I feel ready to share our story.
Xavier came into the world June 19, 2010, at 1:33 pm, weighing 9 lbs 2 ozs and measuring 20 inches long. I'll never be able to fully recapture what I was feeling in that moment. I remember there was a great deal of uncertainty and fear mixed with intense joy and relief upon hearing his cry. I was allowed to see his precious face and hold his tiny hand for a moment before the nurses and NICU transport team took him from the room, thankfully, Matt was able to follow him and that eased my mind a little. Still, I felt the fear welling up inside of me, spilling out in the form of tears. I was trying to be brave, but there was still too much uncertainty about the future for my little boy. Because you see, he was born with a very special heart.
The story actually begins before that moment. Late in January 2010, when I was only 19 weeks pregnant, I went in for a routine ultrasound. Matt went with me to the appointment and our heads were swimming with our private hopes of whether little "baby-to-be" was going to be a boy or girl. The appointment didn't go exactly as planned. Our joy of finding out that we would be having a little boy (and the corresponding worry that we had been unable to agree on a single boy's name) was quickly replaced with fear and uncertainty. The ultrasound tech seemed concerned. He didn't say he was concerned, in fact, he didn't say anything at all, but he was too quiet. After some time, he excused himself from the exam room and returned minutes later with another tech. She took over the ultrasound, only to be replaced by the radiologist soon thereafter. Finally, which seemed like hours later, they shared with us that they were having trouble getting a good image of the baby's heart. They tried to ease our worry by saying it could just be the baby's positioning, but we knew that something wasn't right.
A referral was put in immediately for a fetal echocardiogram with a perinatologist. By the following week, we heard the words that would never again leave our minds, our baby had a serious heart defect, a congenital heart defect known as Double Outlet Right Ventricle (DORV). I had never heard of it until the diagnosis was given, in fact, I had never really heard much about ANY heart defect. I was in shock and heartbroken, and I know Matt felt the same. In the weeks that followed, I had many doctors appointments. I met with my regular OB/GYN, the perinatologist, and a pediatric cardiologist at Rady Children's Hospital. It seemed that with each appointment, especially those with the cardiologist, new diagnoses were added (see link in sidebar).
It was devastating to learn about our son's heart defects. I felt unable to feel happiness or plan for the birth of my child. The world came to a stop...nothing seemed important any longer. I became angry and bitter, and asked "why me", "why us", "why my son?" I was angry at so many people who innocently complained of their child's teething or worried about an ear ache. I thought they just didn't realize how lucky they were that those things were ALL they had to worry about. When people would talk to me about the pregnancy, I would fake a smile and answer as vaguely as possible. I wasn't ready to talk about it. As strange as it may sound, I was grieving...grieving the loss of a healthy child, grieving the loss of my expectations as a mother, grieving the loss of dreams for my child's abilities and future.
It probably took me two months, at least, before I was able to start moving forward again and start planning for the arrival of my son. There wasn't a defining moment for the change. I didn't wake up suddenly one morning and think I'm strong enough to handle this, it was more that I had finally cried enough tears. By the time June came around and my due date was looming. I had finally come to terms with the fact that a life complicated by congenital heart defects was my new "normal."
More about our first year can be found on the CaringBridge page (see sidebar link) we set up for Xavier. It seems like a blur of hospital stays, appointments, and testing, but I know it was so much more than that. It was also filled with Xavier's first smiles, giggles, crawling, solid foods, and so many more exciting firsts! If I get a chance, I will share some of those happy memories here as well.
Xavier came into the world June 19, 2010, at 1:33 pm, weighing 9 lbs 2 ozs and measuring 20 inches long. I'll never be able to fully recapture what I was feeling in that moment. I remember there was a great deal of uncertainty and fear mixed with intense joy and relief upon hearing his cry. I was allowed to see his precious face and hold his tiny hand for a moment before the nurses and NICU transport team took him from the room, thankfully, Matt was able to follow him and that eased my mind a little. Still, I felt the fear welling up inside of me, spilling out in the form of tears. I was trying to be brave, but there was still too much uncertainty about the future for my little boy. Because you see, he was born with a very special heart.
The story actually begins before that moment. Late in January 2010, when I was only 19 weeks pregnant, I went in for a routine ultrasound. Matt went with me to the appointment and our heads were swimming with our private hopes of whether little "baby-to-be" was going to be a boy or girl. The appointment didn't go exactly as planned. Our joy of finding out that we would be having a little boy (and the corresponding worry that we had been unable to agree on a single boy's name) was quickly replaced with fear and uncertainty. The ultrasound tech seemed concerned. He didn't say he was concerned, in fact, he didn't say anything at all, but he was too quiet. After some time, he excused himself from the exam room and returned minutes later with another tech. She took over the ultrasound, only to be replaced by the radiologist soon thereafter. Finally, which seemed like hours later, they shared with us that they were having trouble getting a good image of the baby's heart. They tried to ease our worry by saying it could just be the baby's positioning, but we knew that something wasn't right.
A referral was put in immediately for a fetal echocardiogram with a perinatologist. By the following week, we heard the words that would never again leave our minds, our baby had a serious heart defect, a congenital heart defect known as Double Outlet Right Ventricle (DORV). I had never heard of it until the diagnosis was given, in fact, I had never really heard much about ANY heart defect. I was in shock and heartbroken, and I know Matt felt the same. In the weeks that followed, I had many doctors appointments. I met with my regular OB/GYN, the perinatologist, and a pediatric cardiologist at Rady Children's Hospital. It seemed that with each appointment, especially those with the cardiologist, new diagnoses were added (see link in sidebar).
It was devastating to learn about our son's heart defects. I felt unable to feel happiness or plan for the birth of my child. The world came to a stop...nothing seemed important any longer. I became angry and bitter, and asked "why me", "why us", "why my son?" I was angry at so many people who innocently complained of their child's teething or worried about an ear ache. I thought they just didn't realize how lucky they were that those things were ALL they had to worry about. When people would talk to me about the pregnancy, I would fake a smile and answer as vaguely as possible. I wasn't ready to talk about it. As strange as it may sound, I was grieving...grieving the loss of a healthy child, grieving the loss of my expectations as a mother, grieving the loss of dreams for my child's abilities and future.
It probably took me two months, at least, before I was able to start moving forward again and start planning for the arrival of my son. There wasn't a defining moment for the change. I didn't wake up suddenly one morning and think I'm strong enough to handle this, it was more that I had finally cried enough tears. By the time June came around and my due date was looming. I had finally come to terms with the fact that a life complicated by congenital heart defects was my new "normal."
More about our first year can be found on the CaringBridge page (see sidebar link) we set up for Xavier. It seems like a blur of hospital stays, appointments, and testing, but I know it was so much more than that. It was also filled with Xavier's first smiles, giggles, crawling, solid foods, and so many more exciting firsts! If I get a chance, I will share some of those happy memories here as well.
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