a long overdue update (part 2)

Since it is nearly impossible to recap everything that has happened during the past four years, I will just try to highlight a few of his favorite things.

Xavier is now in the first grade and absolutely loves school. He takes so much pride in getting his work done and is excited to learn new things. He loves reading (he is currently reading Harry Potter and the Sorcerer's Stone) and has been taking two spelling tests each week (his choice to do two). Math is one of his favorite subjects in school and he is working on multiplication and division. I find it crazy because I'm pretty sure I was just starting simple addition when I was in the first grade. I remember being told at the very beginning of our CHD journey that it was very possible that Xavier would have learning disabilities as a result of the CHD and surgeries. He has decided to defy the odds once again and continues to amaze us with what he is capable of.

Here is Xavier on the first day of first grade.

While he does not play with many toys, he does love anything to do with Pokémon, Harry Potter and Legos. If given the choice though, he would almost always choose to be doing something active such as swimming, hiking/geocaching, riding his bike, playing at the park, blowing bubbles, snowboarding, running, jumping, and bouncing. I wish I had a fraction of the energy he has! He loves baseball, both playing little league and cheering on the Padres. He also enjoys doing science experiments and we are often looking at crystals, making slime, and erupting volcanoes. He likes to cook and bake and has made us a few dinners almost completely on his own. Xavier also has a big heart and loves his family, friends, animals (especially dogs), and is concerned about protecting the earth. 

I know I am completely biased, but I think he is a pretty amazing kid. 

   

a long overdue update (part 1)

Where in the world has the time gone? It has been over four years since I last posted. FOUR YEARS!   I can't believe my account hasn't been deleted due to inactivity or something. Do people even read blogs anymore? Well, in the off chance that they do, here is a long overdue update.

Well, needless to say, a lot has happened since my last post. On the medical side of things (let's get that over with first), Xavier did have his Fontan in January 2013 as scheduled and thankfully had a fairly uneventful recovery. Home from the hospital in less than one week! He was going strong these last few years with only regular cardiology check-ups every 6-9 months, and apart from the first couple of months after the Fontan, his only medication has been a daily dose of aspirin. There had been no emergency room visits, hospital stays, or extra procedures. It was great! Life felt (dare I say) normal. Then in December things took a slight detour. He had his regular cardiology appointment and everything was looking good until we got results back from some lab work. His labs showed possible liver issues. Now for those unfamiliar with the Fontan, liver damage is a long-term complication that has come to light in recent years. There is still a lot unknown about why Fontan patients develop liver damage and when it starts to develop. The current standard of practice is to begin checking the liver around ten years post-Fontan. Because that is the standard, we were a little surprised to find evidence there may already be a problem. So additional tests and procedures were scheduled.

Before we could follow-up on the liver, Xavier threw us for a loop by fainting at school without a clear reason why it happened. The school called me at work to let me know the paramedics were there and would be transporting him to the hospital. Talk about a scary phone call to get! He was pretty out of it and fatigued when I got to the hospital, but otherwise seemed okay. Thankfully, his teacher had ridden along in the ambulance so he had someone he knew with him the whole time. She even stayed with me until Matt could get to the hospital. She is pretty wonderful! After spending the afternoon in the emergency room, the doctors decided to admit him overnight for observation. We never did get a reason for why he fainted, although he did develop a fever after he was discharged so it may have just been the beginning of a virus. While the experience scared me, Xavier just went with the flow. He said he thought riding in the ambulance was a little fun and his night in the hospital wasn't so bad either, especially because he got pancakes for breakfast. Ummm...okay. Glad he took it so well!

The week after our unexpected hospital stay, Xavier finally went in for an MRI of his liver. He was less than impressed that he was required to have another IV placed since he had just had one the week before and he hates "pokies" and the tape needed to hold the IV in place. There may have been some screaming and lots of tears, but he made it through. Holy moly MRI machines are loud! I was allowed to go into the room with him and between the earplugs and the noise of the MRI, I could barely hear a thing. Xavier yelled out at one point as the machine was making what can only be described as a siren-like noise "Mom! Is it supposed to be doing that?!" They had warned us about loud noises, but I certainly wasn't prepared for it to be THAT deafening. Hopefully it will be awhile before he needs another MRI.


A few days later, Xavier's cardiologist called us to let us know the MRI showed mild to moderate fibrosis of the liver. Not what we were hoping to hear, but glad that the damage to the liver isn't more extensive. The next plan of action was a cardiac catheterization to see if there is a "mechanical" reason for his liver to already be showing signs of damage. He went in for the catheterization on February 1. He was amazing and brave before the procedure. He had a fun ride along the hallways on the way to the catheterization lab and chatted with the nurse. There were no tears at all and after the nurses told him they wouldn't do the IV until he was asleep (sedated), he didn't even seem nervous. He was a little more unhappy when he woke up after the procedure because he was not allowed to sit up or move around for about 6 hours. In the recovery area, he kept telling me that the doctors didn't do anything. Apparently, he was convinced that he just took a nap and that the doctors never did the procedure. I guess that means he didn't feel any pain from the procedure.


His sentiments that the doctors didn't do anything kind of reflect how Matt and I are feeling about the catheterization though. They really didn't DO anything. That is good and bad news. It's good because that means there were no problems with his Fontan that needed correcting and there was no narrowing increasing pressures inside the central venous system. We also learned the PAVMs, that were mentioned in a previous post (back in 2013), have gone away completely. Those are all good things from the heart standpoint, but it also means we don't have any more answers about his liver. The catheterization did show elevated pressures (but normal levels while resting). There was also some narrowing near the liver, but there were concerns about opening it in relation to Xavier's Fontan fenestration, so for now it has been left as is. The doctor also performed a transthoracic liver biopsy while Xavier was under anesthetic and has suggested yet another liver test called a fibroscan. We will be meeting with the cardiologist who performed the catheterization next week to discuss options moving forward.

So that is where we are at medically. I'll write a part 2 to my long overdue update to share how Xavier has been otherwise.

waiting for surgery

As I mentioned in the update about his catheterization in November, it was determined that Xavier should have his next surgery, the Fontan, sooner rather than later. It was actually scheduled for last Friday, but due to a case of the sniffles, it was decided that it should be postponed to make sure Xavier is healthy. Best decision ever. Xavier got much worse (and so did I). We are all once again on the mend and Xavier seems to be doing much better. His surgery is currently scheduled for this upcoming Friday (January 11). Hopefully we can keep all illness at bay until he has fully recovered from surgery.

catheterization

I am so bad at updating this blog...
Anyway, Xavier had his cardiac catheterization in November. Before I talk more about the procedure and results, I have to take a minute to talk about how incredibly brave Xavier was! He did fantastic! He never once complained that he wasn't able to eat or drink anything before the procedure, and while in pre-op he allowed the nurse to weigh and measure him, take his blood pressure and temperature, and check his O2 saturation without any fussing at all! He let us put on his hospital gown and watched cartoons in the pre-op room until it was time for the catheterization.

Xavier showing us what he thinks about

being in the hospital.



Always trying to take off what the nurses put on.

Thankfully it's just his ID bracelet here.

When the nurse came to get us, Xavier told us he wanted to walk and shuffled along in his hospital gown through the hallways to the cath lab...pausing to point out all the child friendly wall art along the way. At one point the nurse told him that he would be able to eat a popsicle when he woke up from the sedation, and Xavier matter-of-factly declared that he would be eating THREE popsicles. haha!

He was in such a good mood, laughing and playing the entire time....well, at least until we got inside the cath lab. He's never been in there before and you could see his hesitation as soon as we entered. We tried to make it fun for him, but as soon as they asked him to lay down, he panicked a bit and clung to me tightly. It was so sad to have him be held down as he screamed so they could start the sedation process. It's those moments when I feel the most helpless. All I want to do is calm his fears, but I can't stop or take away the thing that is scaring him because they are necessary for his care. How do you help a two year old understand that?

Matt and I met with the doctor briefly and then began our long wait. It was really only three hours before they let us know the procedure was finished, but it seemed to take longer than that. The longest part of the wait seemed to be the time after the procedure was done and we were able to go in and see him. During that time we met with the cardiologist who performed the cath and learned about the findings.

It turns out that while we were under the impression that there was one collateral that had formed, in reality there were quite a few. So many in fact that they were not comfortable closing all of them during this procedure due to the time it would take and the stress on Xavier's body. In addition to the collaterals, they discovered that he has developed pulmonary arteriovenous malformations (PAVMs) in his lungs. This isn't good news as it means his blood is not picking up as much oxygen as it goes through the lungs. PAVMs are a little difficult to find information on as they are very rare in the general population and are typically genetic. However, they are more common in those who have undergone a Glenn or Kawashima procedure, and even more so in those who have undergone one of those procedures, has Heterotaxy and an interrupted IVC (as in Xavier's case). We knew after his Kawashima it was a possibility he would develop them, but I don't think we were prepared for it.

What do the PAVMs mean for Xavier? Well, to be honest I don't really know what effects they will have in the long run, but they do mean that his Fontan surgery will be happening sooner than later so that PAVMs do not continue to develop, making his health worse. There is some evidence that the PAVMs will shrink or close following the Fontan surgery so we are hoping that is true for Xavier and that no further interventions will be needed.  We were already looking at spring for his next surgery, but the cardiologist who did the cath said it was not a good idea to wait that long (more about this in a later post).
I'm always relieved when I'm able to go in and see Xavier after a procedure. I just wish they didn't make us wait until after he wakes up...he has to be so scared waking up in an unfamiliar place surrounded by unfamiliar faces! I think it is safe to say that Xavier was not as happy. He is a firm believer that there should never be anything attached to his body. Ever. This includes, but is not limited to leads, IVs, pulse ox sensors, blood pressure cuffs, and tape (of any kind, including bandaids). I can't say that I blame him for that. 
Xavier did get a little sick from the anaesthesia and never did get to eat his three popsicles. He ate one, drank some juice, and then lost it all. Poor baby. He was still so out of it from the pain meds that he looked at me and asked "Why you pour water on me?" Oh my dear, sweet, innocent boy...I love you.

We had been prepared to stay in the hospital overnight, but were pleasantly surprised when they started drawing up discharge paperwork while in the recovery room. Yay!

catheterization scheduled

Just a quick update to let you know that Xavier's catherization procedure has been scheduled for November 16. He will need to stay in the hospital for a night following the catherization, but should be able to come home the next day. Please keep him in your thoughts.

the "s" word

I sat down to write this post today and instead wrote two others. I guess I am trying to delay the inevitable. Last month, Xavier was seen by his cardiologist and underwent a sedated echocardiogram to see how his heart has been doing since his surgery last October.

Overall it was a good appointment. Xavier is still not a fan of having his blood pressure taken, or his O2 saturation read, or being weighed and measured, or...you see where this is going, right? Let's just say Xavier likes the waiting room, but anything that involves a doctor or nurse is bad news. It is so hard to watch. I have been trying to talk to him in advance to know what to expect and we give check-ups to Elmo and "Bear", but so far nothing seems to ease his anxiety. Please leave me a comment if you have any ideas that might help keep him calm during appointments.

Giving check-ups. Listening to "Bear's" heart.

Anyway, I digress. Overall the appointment went well. Xavier's heart is looking good except for a collateral that has formed and is diverting his blood flow a bit. It isn't a huge concern at the moment, but will need to be closed prior to his next surgery because it can cause complications and delay recovery time. I was, however, taken a bit by surprise when his cardiologist began planning for his next surgery. Initially it had been discussed that Xavier's next surgery (the Fontan) would happen when he was three or four years old. I really thought I had at least another year before I had to think about it.

The plan now looks like Xavier will be headed to the Catherization lab in November or December in order to close the collateral, and then the Fontan will be early next Spring (after the cold/flu season has passed). Just talking about surgery makes me nervous. I'm not ready for it. I don't think I will ever be ready for it.  Matt tries to convince me that an earlier surgery is better. In Xavier's case, it means that he is doing well, and growing and gaining weight. It also means that he will be less likely to remember the surgery and hospital stay as he gets older. I try to remind myself of these things, but it is still difficult to know that in a few months I will be sending him into surgery again. Hate, hate, hate it!

In the meantime, however, I will be taking it day by day. Xavier is so full of life and energy right now (and two year old "spunk"). It certainly makes it easier to forget about the upcoming surgery and cath procedure.

running with a purpose

You may recall that I participated in a running challenge called the Million Mile March earlier this year where I had to run 100 miles during the month of March. I joined the Million Mile March, at the suggestion of my wonderful sister-in-law, in order to raise money for the Children's Heart Foundation. I was able to complete the 100 miles and raise over $300 for CHF! This was quite the accomplishment for me as I was still a very new runner at the time.

Running has become an important part of my life during the past year. Not only does it help me relieve some of the stress of raising a toddler with heart defects (trust me there is plenty of stress involved), but it provides me with a means of raising awareness of congenital heart defects. Xavier is the inspiration behind my running. We have been told by doctors that Xavier will face physical limitations as he gets older and will not be able to participate in cardio and endurance type activities, so I do it for him. When people ask me why I run (and like most runners, I hear the question often), I'm able to share Xavier's story with them.  I'm hopeful that maybe, just maybe, the message will be heard and others will find it in their hearts to help children like Xavier. I also use my running to fundraise when possible. In January 2013 I am running in the Tri-City Medical/Carlsbad Marathon to raise money for Mended Little Hearts. Mended Little Hearts is an organization that works on increasing awareness, raises money for pediatric cardiology research, and provides support to families impacted by congenital heart defects. Click here for more information on how you can help.

With Xavier after my first half-marathon.

 

 



quick summer recap...

We had a very busy summer and had something going on pretty much every week. (Let's just pretend that is the reason why it has been months since I've posted anything here. Haha!) This summer I ran two half-marathons (my first), we celebrated Xavier's second birthday, Xavier got his first "normal kid" stitches, we went to baseball games, went to Comic Con, had playdates with friends, attended my sister's wedding in Wisconsin, and vacationed in Las Vegas with Matt's family. Whew! I'm exhausted just thinking about everything we did. Now on to the real reason for this post...an excuse to share some pictures!

Watching the Tour de France with daddy. Don't forget to wear your helmet!

 

Never too young for Comic Con.

 

 

   Family <3

 

First time on an airplane!

 

Waiting for fireworks at the Padre game.

 If you ask him, he will tell you ALL about the fireworks.

Over...and over...and over...

 

 



                                                                            

normal life still hurts

Apparently normal life still involves trips to the Emergency Room...who would have guessed?!  haha.
Earlier this week, Xavier had a little accident at daycare and fell backwards, hitting his head. He is doing just fine and there were no signs of concussion, but he did need three staples to close a small laceration in his scalp. Poor little man, just can't catch a break.

We did discover a magic cure though. Grape popsicles! Apparently they can make even the worst owies better.

two years later...

Our little heart hero turned TWO last month! It just seems unreal to me how quickly the time has gone. We have certainly endured our share of challenges over the past two years, but I wouldn't trade a moment of it.

Xavier is getting so big, although (probably much to his dismay during his teenage years) he will always be my baby. It has been so much fun watching how he constantly learns new things and develops his own personality. He can be quite stubborn at times and always wants to do everything by himself, but I think this is just part of being a toddler. :) It really is amazing to watch him, knowing that he has been through so much, yet still has the ability to laugh, smile, play, and enjoy life. There are many life lessons that I can learn from him. Through all the ups and downs, these past two years have certainly left me with a new perspective on life and what is truly important.

While we still have to constantly be aware of Xavier's condition, it is no longer seems all-consuming. Yes, I am still reminded everyday when I see his scars; yes, I know that he will have at least one more open-heart surgery; and yes, I check his color frequently looking for any hint of blue, but for the most part our daily life has become "normal"...whatever that is.

a new necklace for mommy

Wanted to share a photo of my new "heart hero" necklace...I love it!

 

My talented friend, Melissa, made this necklace for me. If you would be interested in your own "heart hero" necklace, please check out her Etsy shop here. She also has many other beautiful designs to choose from and is very willing to work with you on a custom order. Thank you again, Melissa!

medical update...surgery and recovery

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.

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.

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!

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!

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.

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.

His method of eating oatmeal by the handfuls

may have something to do with why I end up wearing it most days.

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

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.

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!