I apologize for it taking so long to write an entry about Xavier's heart surgery. We update Xavier's CaringBridge site during hospital stays and I forgot about updating here as well.
Today marks four weeks since Matt and I handed Xavier off to the doctors and nurses at Rady Children's for his third open-heart surgery, fifth surgery overall. I can only speak for myself, but it seems to be getting more difficult to send him into surgery with each one. As it turns out, there was not need for worry, because Xavier once again showed the world what a heart hero he truly is.
This surgery was initially planned for the beginning of September, but was postponed due to his emergency intestinal surgery. Going into surgery, the doctors were hopeful that they would still be able to do a bi-ventricle repair. Although Matt and I maintained a glimmer of that hope, realistically we were anticipating that they would have to proceed with a single-ventricle repair. We had been so devastated last December when we thought for certain a "full" repair would be possible, that we had to plan for a single-ventricle repair this time. As it turned out, Xavier's heart anatomy is just too complex and not positioned in a way to allow for a bi-ventricle repair, so the surgeon proceeded with the single-ventricle repair. The surgery Xavier ended up having is called the Kawashima Procedure.
On the day of surgery, we arrived at the hospital at 5:00am, as Xavier was scheduled for surgery at 7:00. Xavier was in good spirits despite having to wake up even earlier than he normally does and not being able to eat or drink anything. It helps that for surgery we are in a part of the hospital that he doesn't see very often and there is a small playroom, and also that there are other little kids for him to observe while we are in the waiting room. He loves to watch other kids. I joke that he is my little sociologist because he is often content just standing in one place observing people. A nurse took him back to the operating room at exactly 7:00 to be prepped for anaesthsia, and we were sent to the cardiac surgery office to get a pager so they could contact us during and after surgery. I cried when they took him, I just couldn't help it. I was hoping that experience would make handing him off easier, but as I said above, it only made it harder.
After Matt and I got the pager, we decided to go across the street to the Ronald McDonald House. We don't stay there while Xavier is in the hospital because we live close enough to the hospital to drive back and forth as needed, but it is nicer to wait there than being stuck in the surgical waiting area. We always pack too many things to do to keep our minds occupied while Xavier is in surgery. This time we had games packed, but I could not bring myself to play them with Matt. I spent a good deal of time staring out the window at the rain falling down outside. It was such a gloomy day and the weather matched my mood perfectly. I kept singing "You Are My Sunshine" over and over in my head. It is one of the songs I often sing to Xavier when he is upset and it helped bring me a small amount of comfort too.
We received a couple of updates during Xavier's surgery. At 9:40 we received a call from a nurse that he had finally been placed on the heart-lung bypass machine. Around 11:00 is when we found out the surgeon was unable to do a "full" repair and would proceed with the single-ventricle repair. The best call came about an hour later saying he was off the bypass machine and would be heading to the ICU shortly.
We were able to speak with the surgeon before finally being able to go in to see our precious heart hero. One thing that hasn't necessarily gotten easier, but has certainly lost some of the shock value, is first seeing Xavier right after surgery. I know what to anticipate, but it still isn't easy to see my little boy hooked up to so many IVs and machines. It always seems so overwhelming for his tiny little body.
Xavier's recovery happened pretty quickly. He was extubated (taken off the ventilator) within just a couple of hours after surgery. He was incredibly aggitated and in pain and the first two days were very intense. He would scream and cry inconsolably, despite the many medications they were pumping into him, including pain medications and sedatives. We had heard about the "Glenn headaches", but really had no idea what it would be like. It was simply awful. There are no words to describe how terrible those first two days were. I felt like it would never improve and we would be in the hospital for a very long time. However, on the third day, things were suddenly better. We were able to console him again (by holding him and playing Norah Jones - his favorite) and he was taken off most of his pain medications. After that, Xavier improved very rapidly and was able to be discharge on the fifth day! This was his shortest hospital stay after surgery yet!
Xavier has been doing great since surgery and is even more active than ever! His oxygen saturation levels are still a little lower than we were expecting to see (they were at 88% at his last follow-up appointment), but his cardiologist says it can take the body a little while to adjust to the new circulation. Hopefully we will see them rise by his next cardiology appointment later this month. We are expecting them to be mid-90's.
Tuesday, November 1, 2011
Thursday, October 27, 2011
team heart hero
On Saturday, October 1, we participated in the Shamu & You Family Walk to benefit Rady Children's Hospital. We formed our own team, Heart Hero, this year in honor of Xavier and other children with congenital heart defects. We were fortunate to be able to join forces with the cardiology department at Rady's and become the official team for cardiology....this meant not only were we able to recruit more walkers and raise more money, but it also meant that any funds raised by our team would be allocated specifically for cardiology use. As a team, we had 92 walkers registered and raised over $7200!! It was so wonderful and amazing to see how many people showed up to support Rady Children's Hospital and how many families were there with their VIPs (Very Important Patients). I'm already looking forward to next year!
Taking a break to hang out with Shamu. Xavier is signing "whale" in this picture...so cute!
Also, a good picture of the Heart Hero cape Matt's mom made for Xavier. She also made capes for three other little heart heroes on our team (thank you Oma!).
Riding on daddy's shoulders.
Monday, September 26, 2011
a little mommy bragging time
I am always amazed at what Xavier is able to do. I realize I say that all of the time, but it's true! I'm probably even more amazed than your average parent because of all the extra "stuff" Xavier has been through. For that reason, you will have to forgive me for feeling the need to share my amazement with all of you...over and over and over!
Xavier is now walking all over the place by himself. It is so cute to watch him walk around, carrying his toys with him! He officially took his first independent steps about two months ago, but he has finally gained enough balance and confidence in his own legs to do it consistently. Over the weekend, Matt and I took him to Babies R Us and Xavier walked around the ENTIRE store by himself, and if you have ever been to BRU you know it isn't a small store by any means. We weren't in a hurry so we just followed him around as he checked out the shoes, toys, and baby gear. We did pause for a minute to check out a potty chair, but Xavier kept reaching down between his legs into the bowl. I don't think we are quite ready for that...haha!
My other bragging right comes from how smart Xavier is. Matt and I have been teaching Xavier sign language to help him communicate since he isn't talking yet. He has been doing really well with it and I was curious about how many signs he knows. I made a list of all the signs he has done multiple times, unprompted, and came up with 36 signs! Wow!! Here is a list of the signs he knows: milk, more, eat, all done, up, down, dad, bath, bubble, ball, football, tree, flower, hat, shoes, car, helicopter, airplane, dog, cat, fish, bird, butterfly, lion, giraffe, bear, alligator, hippo, elephant, seal, monkey, cow, horse, mouse, pig, octopus. I'm sure that I am missing some and he is learning more every day! He also likes to point to other little boys and then back at himself as if to say "hey, those kids are like me!" He is so smart and is becoming so much more aware of his surroundings. It is so much fun watching him learn new things!
I love this little boy with all my heart! He is so special!
Xavier is now walking all over the place by himself. It is so cute to watch him walk around, carrying his toys with him! He officially took his first independent steps about two months ago, but he has finally gained enough balance and confidence in his own legs to do it consistently. Over the weekend, Matt and I took him to Babies R Us and Xavier walked around the ENTIRE store by himself, and if you have ever been to BRU you know it isn't a small store by any means. We weren't in a hurry so we just followed him around as he checked out the shoes, toys, and baby gear. We did pause for a minute to check out a potty chair, but Xavier kept reaching down between his legs into the bowl. I don't think we are quite ready for that...haha!
My other bragging right comes from how smart Xavier is. Matt and I have been teaching Xavier sign language to help him communicate since he isn't talking yet. He has been doing really well with it and I was curious about how many signs he knows. I made a list of all the signs he has done multiple times, unprompted, and came up with 36 signs! Wow!! Here is a list of the signs he knows: milk, more, eat, all done, up, down, dad, bath, bubble, ball, football, tree, flower, hat, shoes, car, helicopter, airplane, dog, cat, fish, bird, butterfly, lion, giraffe, bear, alligator, hippo, elephant, seal, monkey, cow, horse, mouse, pig, octopus. I'm sure that I am missing some and he is learning more every day! He also likes to point to other little boys and then back at himself as if to say "hey, those kids are like me!" He is so smart and is becoming so much more aware of his surroundings. It is so much fun watching him learn new things!
I love this little boy with all my heart! He is so special!
updates...the medical side of things
It has been awhile since I've written and I thought I should share a few updates about Xavier.
Most importantly...he is doing much better! He was discharged from the hospital on September 7, a week and a half after being admitted, and has been doing really well since he got home. Before we left the hospital, we couldn't even get him to sit up in the hospital crib. Matt and I were definitely worried about how much the surgery had set Xavier back and how much pain he might be in. I assumed we would have a few quite days resting and cuddling on the couch...I couldn't have been more wrong! The minute we got home and I sat down with Xavier on my lap, he was squirming his way down to the floor and walking along the couch to get to all of his toys. I was so happy to see him active and wanting to play, but honestly, also a little sad to miss out on more cuddle time. ha. You would never know by looking at him now that he had a 6-inch section of his intestines removed four weeks ago today. He is just as active and spunky as ever (if not more so)! He seems to be eating better, but is still falling short on the growth charts. As of last week he was still less than 20 lbs. I'm not concerning myself as much about where he falls on the growth charts, as to how he is eating and his energy level. Although we still have him on a high-calorie, high-fat diet to help him gain more weight.
Last week, Xavier had appointments with his cardiologist and his intestinal surgeon. Both were very impressed with his recovery and said he was doing great. I love hearing good news from the doctors! Both doctors also gave their approval to proceed with his next cardiac surgery, which is scheduled for a week from tomorrow on October 4. It's coming up much too quickly!
I'm really hoping that Xavier will get a little break from the hospital after this next surgery...he deserves some time to just be a kid!
Most importantly...he is doing much better! He was discharged from the hospital on September 7, a week and a half after being admitted, and has been doing really well since he got home. Before we left the hospital, we couldn't even get him to sit up in the hospital crib. Matt and I were definitely worried about how much the surgery had set Xavier back and how much pain he might be in. I assumed we would have a few quite days resting and cuddling on the couch...I couldn't have been more wrong! The minute we got home and I sat down with Xavier on my lap, he was squirming his way down to the floor and walking along the couch to get to all of his toys. I was so happy to see him active and wanting to play, but honestly, also a little sad to miss out on more cuddle time. ha. You would never know by looking at him now that he had a 6-inch section of his intestines removed four weeks ago today. He is just as active and spunky as ever (if not more so)! He seems to be eating better, but is still falling short on the growth charts. As of last week he was still less than 20 lbs. I'm not concerning myself as much about where he falls on the growth charts, as to how he is eating and his energy level. Although we still have him on a high-calorie, high-fat diet to help him gain more weight.
Last week, Xavier had appointments with his cardiologist and his intestinal surgeon. Both were very impressed with his recovery and said he was doing great. I love hearing good news from the doctors! Both doctors also gave their approval to proceed with his next cardiac surgery, which is scheduled for a week from tomorrow on October 4. It's coming up much too quickly!
I'm really hoping that Xavier will get a little break from the hospital after this next surgery...he deserves some time to just be a kid!
Saturday, September 3, 2011
back in the hospital
We had finally gotten a date scheduled for Xavier's next heart surgery. September 6 was to be the big day. I had started mentally preparing myself for that awful moment when i would once again have to hand him off for surgery, and for the ups and downs of the subsequent hospital stay.
It turns out that Xavier had other plans. He bacame very sick last Sunday and Matt and I were concerned enough to warrant a visit to the emergency room. We were very hopeful that we would leave a few hours later with an expensive diagnosis of stomach flu. I think a part of us knew it wasn't going to be that simple, but had no idea just how serious the situation was. They decided to admit Xavier based on his history, and while we waited they took x-rays and did a CT scan of his abdomen. The doctor in the E.R. Told us it looked there was a possible obstruction in Xavier's intestine, but they were waiting for the surgeon who performed his Ladd procedure to review the film. They finished the admission process and took us up to his room. By this time it was 5am and I had been awake for over 24 hours...I was so exhausted and ready to let Xavier sleep and hopefully get a little sleep myself. We got Xavier settled and I layed down on the pull-out chair in his room. An hour later, the nurse came in the room saying they were preparing to take Xavier to surgery. I was stunned. I never expected emergency surgery. I wasn't sure what to say or think...just completely stunned. By this time though the adrenaline was flowing and I was wide awake. I immediately called Matt to have him come back to the hospital. Then the fear started to settle in. It's fear that sets in quickly and could easily be overwhelming, but I had to be strong for Xavier so I had to push it aside. I followed Xavier to the pre-op area where I was able to talk with the surgeon and give Xavier a kiss on the forehead. The fear returned with a vengeance as soon as they wheeled him away on the bed. Thankfully, Matt was able to make it back to the hospital before they took him away. I don't know what I would have done if I had been there alone.
It is always so nerve wracking when you finally get called back to talk to the surgeon. What are they going to say? Did everything go well? Any complications? How is Xavier doing? The surgeon eased our minds when the first words out of his mouth were that Xavier did really well. It turned out the surgeon had to remove six inches of Xavier's small intestine that had coiled tightly (kinked) causing a blockage. The surgeon believes this has probably been happening for awhile and may likely be the reason behind all of his recent GI issues. We hope that much of this is behind us because his GI issues always end to flare up after his heart surgeries and slow down hs recovery. By the time we went home Monday night, we had been up for 42 hours. We were both completely exhausted so we decided it was best for both of us to sleep at home since Xavier would remain sedated overnight.
Xavier is doing well now (5 days post-op) although he still has limited bowel sounds and is not allowed to eat or drink anything. It took them two days to get him off the ventilator because his oxygen saturation levels kept dropping (his normal level is mid-80's and they were dropping as low as the 30's), requiring the nurses to "bag" him. It was so hard to watch his sats start to drop, willing him to take deep breaths on his own, knowing the nurses were going to have to intervene to get his oxygen saturation back up. Every single time, I worried whether or not their intervention would work.
I really try not to think of the worst-case scenarios when we are at the hospital with Xavier, but sometimes fear brings them to the forefront of my mind. Once they are there, they are hard to shake. It didn't help ease my mind when another cardiac patient passed away in the ICU this week. While that is my worst fear ever, it is also a reality check about how lucky we actually have been so far. It's a reminder to never take a moment with Xavier for granted. Life is far too uncertain.
Needless to say, his intestinal issues have taken precedence for now and his heart surgery has been postponed "until further notice" to allow him time to recover. It's hard to imagine that we will most likely be back here again soon for another surgery. For now though we are focused on his recovery from this surgery and trying not to think about what is yet to come.
It turns out that Xavier had other plans. He bacame very sick last Sunday and Matt and I were concerned enough to warrant a visit to the emergency room. We were very hopeful that we would leave a few hours later with an expensive diagnosis of stomach flu. I think a part of us knew it wasn't going to be that simple, but had no idea just how serious the situation was. They decided to admit Xavier based on his history, and while we waited they took x-rays and did a CT scan of his abdomen. The doctor in the E.R. Told us it looked there was a possible obstruction in Xavier's intestine, but they were waiting for the surgeon who performed his Ladd procedure to review the film. They finished the admission process and took us up to his room. By this time it was 5am and I had been awake for over 24 hours...I was so exhausted and ready to let Xavier sleep and hopefully get a little sleep myself. We got Xavier settled and I layed down on the pull-out chair in his room. An hour later, the nurse came in the room saying they were preparing to take Xavier to surgery. I was stunned. I never expected emergency surgery. I wasn't sure what to say or think...just completely stunned. By this time though the adrenaline was flowing and I was wide awake. I immediately called Matt to have him come back to the hospital. Then the fear started to settle in. It's fear that sets in quickly and could easily be overwhelming, but I had to be strong for Xavier so I had to push it aside. I followed Xavier to the pre-op area where I was able to talk with the surgeon and give Xavier a kiss on the forehead. The fear returned with a vengeance as soon as they wheeled him away on the bed. Thankfully, Matt was able to make it back to the hospital before they took him away. I don't know what I would have done if I had been there alone.
It is always so nerve wracking when you finally get called back to talk to the surgeon. What are they going to say? Did everything go well? Any complications? How is Xavier doing? The surgeon eased our minds when the first words out of his mouth were that Xavier did really well. It turned out the surgeon had to remove six inches of Xavier's small intestine that had coiled tightly (kinked) causing a blockage. The surgeon believes this has probably been happening for awhile and may likely be the reason behind all of his recent GI issues. We hope that much of this is behind us because his GI issues always end to flare up after his heart surgeries and slow down hs recovery. By the time we went home Monday night, we had been up for 42 hours. We were both completely exhausted so we decided it was best for both of us to sleep at home since Xavier would remain sedated overnight.
Xavier is doing well now (5 days post-op) although he still has limited bowel sounds and is not allowed to eat or drink anything. It took them two days to get him off the ventilator because his oxygen saturation levels kept dropping (his normal level is mid-80's and they were dropping as low as the 30's), requiring the nurses to "bag" him. It was so hard to watch his sats start to drop, willing him to take deep breaths on his own, knowing the nurses were going to have to intervene to get his oxygen saturation back up. Every single time, I worried whether or not their intervention would work.
I really try not to think of the worst-case scenarios when we are at the hospital with Xavier, but sometimes fear brings them to the forefront of my mind. Once they are there, they are hard to shake. It didn't help ease my mind when another cardiac patient passed away in the ICU this week. While that is my worst fear ever, it is also a reality check about how lucky we actually have been so far. It's a reminder to never take a moment with Xavier for granted. Life is far too uncertain.
Needless to say, his intestinal issues have taken precedence for now and his heart surgery has been postponed "until further notice" to allow him time to recover. It's hard to imagine that we will most likely be back here again soon for another surgery. For now though we are focused on his recovery from this surgery and trying not to think about what is yet to come.
Wednesday, August 17, 2011
oatmeal...today's hottest fashion accessory
I see women carrying around their children while wearing the latest fashions and high-heels, and I just don't understand it. How do they do it?? I get dressed in the morning and not even ten minutes later the neckline of my shirt is stretched down to my bellybutton and I'm wearing a lovely concoction of drool, oatmeal, and peanut butter. I only wish that I were exaggerating!
I really should take more pride in my stretched out clothing with random stains. They show me off to the world as a mom...one that is down on the floor playing and getting dirty right along with my son. I love being able to take Xavier to the park and not worry about getting down in the grass or going down the slide with him. Being a mom just wouldn't be as much fun if I were wearing heels or trying to keep an expensive wardrobe clean.
While there are certainly days that I would like to be able to leave the house wearing a fashion accessory other than oatmeal, I will probably never be a very stylish mom...and that's okay with me. I like to think that when I look back on these times, I will smile, laugh, and miss the oatmeal stains and what they represent.
I really should take more pride in my stretched out clothing with random stains. They show me off to the world as a mom...one that is down on the floor playing and getting dirty right along with my son. I love being able to take Xavier to the park and not worry about getting down in the grass or going down the slide with him. Being a mom just wouldn't be as much fun if I were wearing heels or trying to keep an expensive wardrobe clean.
While there are certainly days that I would like to be able to leave the house wearing a fashion accessory other than oatmeal, I will probably never be a very stylish mom...and that's okay with me. I like to think that when I look back on these times, I will smile, laugh, and miss the oatmeal stains and what they represent.
His method of eating oatmeal by the handfuls
may have something to do with why I end up wearing it most days.
Wednesday, August 10, 2011
preparing for the shamu & you family walk...looking back...looking forward
This will be my second year participating in the Shamu and You Family Walk to benefit Rady Children's Hospital. Last year, I had the privilege of joining a team led by a dear family that we met while Xavier was in the NICU. They were the first family that we got to know that also had a child with congenital heart defects. I felt immediately bonded with them as we leaned on each other for support during that time spent in the NICU. Unfortunately, this family lost their precious daughter to the battle with CHD. I shed many tears when I learned their daughter had passed...I cried for many reasons. I cried out of heartbreak for the family, as no parent should ever have to experience the loss of their child. I cried out of fear that I could someday experience that same loss. I cried out of guilt that my child was alive and their's was not. I cried out of joy that Xavier was asleep on my lap and that I could lean down and kiss his soft cheek and hold him in my arms.
When this family asked me to join their team for the Shamu and You Family Walk in memory of their daughter, I didn't hesitate for a moment. It was a wonderful and moving experiece! With every step I was able to show my support of this dear family and also the hospital that allowed me to experience life with my son.
This year, I am honored to lead a new team...Team Heart Hero. Named so because my son is my hero. He has gone through so much during the first year of life, more than I will ever personally experience, yet you would never know anything was wrong by looking at him. He is my inspiration for this team. I owe every moment I spend with Xavier to Rady Children's Hospital. Although I will never be able to give back everything Rady Children's has provided my family, I can certainly try.
Looking forward, I hope that I can keep this team going year after year. Not only do I see this as an opportunity to give back to Rady Children's Hospital, but also as a way to bring more awareness to congential heart defects by sharing Xavier's story.
Please join me in giving back to Rady Children's Hospital.
http://shamuandyouwalk.kintera.org/xaviermyhearthero
When this family asked me to join their team for the Shamu and You Family Walk in memory of their daughter, I didn't hesitate for a moment. It was a wonderful and moving experiece! With every step I was able to show my support of this dear family and also the hospital that allowed me to experience life with my son.
This year, I am honored to lead a new team...Team Heart Hero. Named so because my son is my hero. He has gone through so much during the first year of life, more than I will ever personally experience, yet you would never know anything was wrong by looking at him. He is my inspiration for this team. I owe every moment I spend with Xavier to Rady Children's Hospital. Although I will never be able to give back everything Rady Children's has provided my family, I can certainly try.
Looking forward, I hope that I can keep this team going year after year. Not only do I see this as an opportunity to give back to Rady Children's Hospital, but also as a way to bring more awareness to congential heart defects by sharing Xavier's story.
Please join me in giving back to Rady Children's Hospital.
http://shamuandyouwalk.kintera.org/xaviermyhearthero
Wednesday, August 3, 2011
In the waiting room
I'm sitting here in the waiting room at Rady Children's Hospital...trying to pass the time. I've been here since 5:30 this morning because Xavier is having a MRI. Thankfully, the first two hours went fairly quickly. I was busy getting Xavier checked-in, having his vitals taken, and trying to keep him entertained (and distracted from the fact that he hadn't had anything to eat or drink since 10:30 last night). Now that he has been taken back, the time is dragging. I have been left in a waiting room in the MRI center in the basement of the hospital. Usually I spend my time people-watching, but I'm the only person here. Well, there is a receptionist sitting behind a window, but I think it might make her nervous if I spend the next two hours staring at her.
I always get so anxious when they take him back for procedures. Even though I know the MRI is so minor compared to his surgeries, he still has to be intubated and there are always risks associated with anesthesia. I refuse to say "good-bye" though when they take him, it just seems too final. I only kiss his cheek and tell him that I'll see him in a little bit. I know I'll see him again soon.
But for now, I wait.
I always get so anxious when they take him back for procedures. Even though I know the MRI is so minor compared to his surgeries, he still has to be intubated and there are always risks associated with anesthesia. I refuse to say "good-bye" though when they take him, it just seems too final. I only kiss his cheek and tell him that I'll see him in a little bit. I know I'll see him again soon.
But for now, I wait.
Saturday, July 30, 2011
and we are WALKING!
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!
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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