Being the parent of a medically fragile child is hard. In my opinion, being the sibling of a medically fragile child is sometimes even harder. The family of a medically fragile child walks a fine line between sanity and falling off the edge of a cliff. Living in constant survival mode doesn't leave much room for unplanned events. So, when the medically fragile child gets sick unexpectedly, the whole family has to stop what they are doing and rush to the child's side. Oftentimes, when that happens, the healthy child gets left in the dust wondering where everyone went. It's a rough place to be. It literally brings tears to my eyes to think of Sierra standing in that place. And yet, we're guilty of putting her there, time and time again. So is the way life goes with a medically fragile child, I'm afraid. So to have an opportunity to make that healthy child feel special, like the most important person in the world, as if the whole world has stopped just for her, well that opportunity is priceless. Thank you, thank you, thank you Icing Smiles for giving us that opportunity.
In the past year, our sweet Sierra has had to deal with missing me, who had primary hospital duty, being shuffled between different relatives and friends, spending long days in a hospital icu room for a stretch and essentially having her whole world turned upside down. Even when I was home, I often wasn't mentally "there," constantly torn between the two halves of my heart, separated by a half a city. But through it all, she has been such a trooper this past year and has simply exemplified what every parent would want in an older loving sibling. After everything she had been through this year, we really wanted to make her birthday special and truly have the focus be all about HER. We were so excited that Icing Smiles was able to help us do this. Icing Smiles is a non profit organization that provides custom celebration cakes and other treats to families impacted by critical illness of a child. Their goal is to create a custom cake for the ill child or their sibling that will provide a temporary escape from worry and create a positive memory during a difficult time.
Icing Smiles connected us with Jennifer Hernandez (http://www.temeculacakes.com/). Well, Jennifer truly went above and beyond. She made us, without a doubt, the most amazing cake I have ever seen. All I told her was that the party was a princess theme. She showed up (after a 2 hour drive - she drove all the way from Temecula!) and set it up in our dining room. I walked out to see a Rapunzel cake as tall as Sierra!!! I was so touched and couldn't stop crying. I mean, I cried at Bodie's cake (also from Icing Smiles, although a different local baker), but I was full on bawling this time around. To think that someone would have done this for our sweet Sierra was just too much for me.
Sierra LOVED the cake and was so excited to show it off to all of her friends! Every single person who walked in stopped short when they saw the cake and remarked about how amazing it was. And not only was it beautiful, but it was absolutely delicious as well (the top layer and bottom 2 layers were cake and the tower was made out of rice krispy treats)!
THANK YOU Icing Smiles and THANK YOU Jennifer. You have touched Sierra, and our family, in a way that we will never forget. God Bless You.
Not willingly, of course. We had to evict her. After 21 hours of labor followed by 4½ hours of pushing, oh and a little help from a vacuum, she realized resistance was futile and decided to join us on the outside. Our lives would never be the same. In the last 4 years, we have watched her bloom from a feisty little baby…
…into a silly little toddler…
…into a wild and crazy sweet little girl.
Our lives have been so incredibly blessed by her. We celebrated her birthday this weekend with a princess-themed party and, with the help of Icing Smiles (and the MOST AMAZING cake ever, made by Jennifer, who drove it out all the way from Temecula - the cake was amazing enough to warrant its own post later this week), we had an incredible opportunity to celebrate Sierra!
SO excited... Sierra with her bestie Ace...total partners in crime (I'm pretty sure Ace is "post-cupcake" in this pic). What could be better than decorating your own cupcake? (hey moms of young 'uns - we've done this the last 2 years for Sierra's birthday and it has ROCKED - give the kids newly frosted cupcakes with bowls of sprinkles and goodies and keeps them occupied for awhile. Just make sure you do it outside ;-) ). Showing off her fancy cupcake...Bodie, well, where else, but in Mommy's arms... The cake, the incredible Rapunzel cake, oh my. GORGEOUS. More about this cake in a post later this week, I promise! A family pic with the cake! The whole family - Uncle Matt, Auntie Val, Baby Michael, Popo & Gigi and Us...
Cousins Michael (10 months) and Bodie (14 months). Or, as I like to call this pic - the President & his beefy bodyguard (on the Barbie mobile). :-)
The perfect moment, the moment where one year ends a new one begins, full of wishes for a beautiful and bright future for a sweet 4 year old girl... Sweet Sierra, we love you more than you could ever imagine. You bring such energy and light to our home. We are privileged to be your parents and so grateful God lent you to us. We pray that we are worthy of that calling, of being your parents. On this, the first day of your life as a 4-year old, we wish for you many, many, many more birthdays to come, filled with love and light and a peace in knowing you are a beautiful child of God...and many, many perfect moments like we had this weekend. We love you, sweetheart. Mommy and Daddy.
One year ago tonight, I was sitting in a busy ICU room, holding the hand of my pastor's wife and dear friend, Erika, praying like crazy that God was not taking my son from me already.
One year ago tonight, Dusk was scrambling to find someone to stay with Sierra and get up to the hospital as quickly as he could, in case our son was out of time.
That night. That scary, scary night. I don't know that I ever blogged the details about it, but I think it's time. This blog will, God willing, be a scrapbook for Bodie someday, a chance to look at his miraculous life through our eyes...a constant reminder of how far he has come...and how much further our Lord will hopefully take him.
Bodie had been having a really rough day. We had brought him into the ER 2 days earlier for slight lethargy during a feed and lower sats than usual. We had been in the ER less than an hour when his sats really dropped and they couldn't bring him up even with high levels of 02. They bagged him and admitted him to the CTICU. The next day, he slept in my arms almost the entire day on 8L of vapotherm (about as high as you can get) while a huge medical team tried to figure out what was going on. They threw out theory after theory (maybe aspiration? likely shunt narrowing?). No one really knew. All they knew was he was satting in the 60's and they had no idea why. We were worried.
Then came April 20th. They decided the most likely culprit was a shunt narrowing. They didn't see it on the echo, but sometimes, depending on where it narrows, you can't see it on an echo. So they sent Bodie to the cath lab that morning. He coded on the table before they even began. He required about 30 seconds of chest compressions before his heartrate picked back up. The procedure otherwise went fine and it showed no shunt narrowing. Still no answers. They brought him back to his room and he coded again, requiring a few seconds of chest compressions. The rest of the day was spent trying to stabilize him. They'd get him stabile, using a myriad of meds and a paralytic, but as soon as the paralytic would wear off (it lasted about an hour), he would decompensate, so they'd have to push more fluid, go up on his epinephrine and do another dose of paralytic, which would stabilize him for another hour or so. The docs were in his room all day, talking about what on earth was going on and if they could even fix it. We were scared, but they were still able to stabilize him with their arsenal of tricks.
Then, at about 9pm, things really started spiraling downhill and quickly. All of the sudden, the doctors were in Bodie's room every 15 minutes, pushing fluids...and he would stabilize for about 15 minutes and that was it. Then, his sats and heart rate would drop and his pressures would rise. At one point, the doctors weren't leaving at all, but just staying there. He was full of fluid and maxed out on epi, plus an extra 2 bolus doses. Code meds were drawn. I was terrified.
I had been sitting by Bodie's bedside all day. Because they had been able to keep him more or less stable throughout the day, Dusk had stayed home with Sierra and I was by myself for a majority of the day. The nurses kept asking me if I had had a chance to rest, or to eat, but there was no leaving his bedside. I just sat there, silently crying and praying for most of the day. Thank God our pastor's wife Erika came up to sit with me that evening. I think I had even told her she didn't need to, but luckily she totally ignored my request.
So, we were sitting there at 9pm, watching the doctor's expressions, me pumping under a blanket in my chair. The attending doctor, Dr. Rivera, walked in. I knew from her expression that things were grim. I finally asked the question I had been dreading the answer to. I said "I need to ask you something. I've been watching what's been going on all day. I know things are not good. Is this the time I need to call my husband and have him come up?" I'll never forget her response for as long as I live. She paused, looked at me and then said "you know, that's a really tough question to answer. I will tell you that your son is very sick and we are very worried about him. I would hate for something to happen and your husband not to be here. So yes, I would probably call him."
I called Dusk and, as he was scrambling to get someone to watch Sierra, he started calling everyone in his cell phone, asking them to get out of bed and on their knees, and pray for a miracle for our son. Shortly thereafter he was in route, continuing his calls for prayers on the way up to the hospital.
Within a very short time after he started making those calls, Dr. Rivera said "you know, your son has been having a LOT of arrythmias today (that was nothing new for Bodie). CHD kids, particularly single ventricle kids, like a very steady bump-bump rythmic heartbeat. I'd like to try externally pacing him to see if that helps him at all." Mind you, the "to pace or not to pace" question had been delved into numerous times over the previous 2 days with the general consensus that pacing had not helped him considerably in the past so there wasn't much point to trying it now. But Dr. Rivera did it - it was her Hail Mary.
Within less than an hour of starting to pace him, he had stabilized. In fact, by the time Dusk got to the hospital, the critical danger zone had passed. It would be days before they would completely piece together a treatment plan that would include a shunt revision and pacemaker placement less than a week later. And he was medically supported by a LOT of different medicines. But it was his turning point. He started coming back that night. Praise God.
When I thanked Dr. Rivera afterwards for saving my son's life, she responded that she prayed every day for God to give her the wisdom to find the best ways to treat her patients. There is no doubt that is exactly what happened that night. When my mom asked the resident later about the miraculous turnaround we had witnessed, my mom asked if she saw that kind of thing happen often. Her response was that she saw kids get really sick, some of them got better, but rarely did she see them turn around like Bodie did. I think her honest opinion was that Bodie had some divine intervention. I could not agree more.
So today has been a heavy day for me. Just remembering so many emotions from a year ago. And looking at this sweet face, thinking about how hard he has fought to be here. I could not be more grateful.
And, as things often work out in ways we don't expect, today was a milestone for a whole other reason as well. You see this?This is Bodie's last bag of frozen breastmilk. As I type, it is thawing out in preparation for his morning bottle tomorrow. (Yes, I'm pretty proud that my breastmilk lasted him all the way until 14 months!) How fitting it is that one year later, to the hour, of almost losing our son, I am thawing out his very last bottle of breastmilk as we transition him to big boy things like whole milk and sippy cups. Praise God indeed!!!
I know that this has been a pretty heavy post, so I thought I would close with some lighthearted sweetness. In between climbing up and down the stairs (and up and down and up and down and up and down) oh and the coffee table now, this is what our sweet boy treats me to these days... I am so lucky. :-)
Sigh...the kid really keeps us on our toes. Who, me?
Yes, you. In my post last week, I mentioned that we planned to try Bodie out at elevation. Well, he decided he wasn't down for that and decided to get an ear infection before we left town. Make that a double ear infection. His pediatrician took one look at him and said single ventricle + underlying pulmonary hypertension + double ear infection = NO altitude. Bummer. But we made the most of it, spending the entire weekend in Palm Springs with Gigi and Popo instead! The kids had a great time. Well, Sierra had a great time...
Especially goofing off with Popo...
and practicing her mad hairstyling skills (love her serious expression here)... Bodie? Well, he was happy...as long as we let him do whatever he wanted, which alternated between crawling on anything and everything dangerous... (See his little leg there? Yep, he's trying to climb out of the spa himself.)...and trying to get as close to mommy as humanly possible (I am not kidding when I say I am fairly certain that he views me as his long-lost body part that was erroneously severed at birth). His separation anxiety was at an all time high. Par for the course for Bodie when he's sick, but definitely made for an interesting weekend.
Then we got home and things really got interesting...since he had been fussier than usual and coughing and wheezing a lot on Monday, we put him on pulse ox when we put him to bed...where he sat in the low 70's (his baseline is low 80's, but he can drop to the high 60's when he's sick or having a pulmonary hypertension episode). Ok, not excited about him being in the low 70's, but understandable for him given that we know he's sick. But then, he quickly dropped...and dropped...and dropped. AND SAT IN THE MID 50'S TO LOW 60'S. (For you non heart-parents out there, this is NOT good (although pulse-oxes aren't really reliable under, say 65, it's still not good). For you heart parents out there, you can pick your jaws up off the floor now.) I was sitting in disbelief staring at the monitor, just willing it to go up (for the record, I haven't found that method particularly useful for increasing sats, but I can't seem to stop attempting). Then Dusk sat with me, as we got more and more panicked. We woke Bodie up, who, once he got over his initial disorientation, thought it was really funny that mommy and daddy wanted to play with him. He wasn't having any breathing difficulties, was acting fine and his color was beautiful...but his sats sucked.
Luckily, we have the world's BEST cardiologist (we love you Dr. Kim!!!), who thankfully didn't mind fielding a call from me at 9:30 at night, and talked me down off the ledge. We decided I could stop packing our hospital bag and that no, if everything else looked fine, he has such a history of crazy satting and was stable enough otherwise that we didn't need to rush him up to CHLA that instant. (THANK GOD because I was in a mad panic, with my mind swirling about how we were doing this all again and how Bodie was going to hate me for taking him to the hospital and how Sierra's birthday party was this weekend and how could this be happening - this was supposed to be the day about HER!!!) (Man, PTSD does some nasty stuff to your psyche.)
Anyway, we decided there was a good chance it was a nasty pulmonary hypertension episode and our plan was to push fluids, watch him, increase his pulmonary hypertension med (since he was ready to go up on it with his recent weight gain anyway) and take him in this morning if his sats didn't improve. So...watch him I did. Every 20 minutes all night, I'd pop up in bed (not from an alarm clock mind-you, from my internal freak-out mode), glance at the pulse ox, freak out that the number wasn't higher, and then go back to sleep for another 20 minutes or so (not a fun way to spend the night and probably the main reason a lot of cardiologists tell you not to have a home pulse ox). Oh, and for the record, every time Dusk woke up and glanced at the monitor, the number was always higher. What the what? How is that fair???
His numbers were better this morning, but still highly variable, so we took him in. His regular pediatrician couldn't get us in until the end of the day, so we went to the urgent care associated with her office. Wouldn't you know it, he was satting 82 while we were there. The doc did a full assessment and said he looked great and she saw no reason to think he had pnuemonia, which had been my concern (no fever, no difficulty breathing, etc.). She said to bring him back if he started having other symptoms, but he looked great to her (she even told me he didn't look at all cyanotic to her, which is music to a single ventricle mom's ears). Since then, he's been fine. Sleeping, well, like a baby and satting in the high 70's and low 80's since we put him down. General thought is that he had a really bad pulmonary hypertension episode, and thanks to his increased Sildenafil, he seems to have gotten the upper hand on it and turned the corner today.
So, there you have it. All's well that end's well. Except for the couple of years that were shaved off my life last night.
Last month, we had a wonderful friend and amazing photographer, Stephanie Rue, come to the house to take some shots of the kids. She is so incredibly talented (seriously - if you live in southern California, you can do NO better than her!!!). Knowing how talented she was, I was on the edge of my seat waiting to see how they turned out. Well, they turned out absolutely gorgeous!!! Enjoy...
Thank you Stephanie! We will cherish these pictures forever.
Ok, maybe mama's not the only one who needs a drink tonight...
Today was Bodie's bi-monthly cardiology appointment. As any heart mom will tell you, the days and hours leading up to a cardiology appointment are nothing short of, well, absolute nail-biting terror. The tricky thing about these cardiac kids is that they hide their defect well. They can look robust and healthy as all get-out from the outside but can literally be ticking time-bombs inside. So, each opportunity to get a look inside is a welcome chance to know that everything is aok. BUT, the moments leading up to the cardiologist saying "the echo looked great" are just fraught with way too much suspense for a mama's poor heart. Over the past few days leading up to today's appointment, I had literally just about convinced myself Bodie was in complete heart failure and we'd find out he'd need a transplant, like, NOW. (Mind you, he didn't actually have any symptoms to warrant it, but it's amazing how overactive a stressed out imagination can be - hey, I'm a heart mom - being neurotic kind of goes with the territory.)
The short story is that my worry was for nothing, because Bodie's little heart looks GREAT!!! PRAISE GOD!
The long story is that Bodie doesn't feel the same sense of relief from today's appointment that I do. He was all smiles until the tech pulled out the pulse ox. She turned it on, it beeped (mind you, she hadn't even touched him yet) and at JUST THE SOUND OF THE BEEP, he lost it. Kicking, screaming, flailing. You'd have thought she was tearing him apart limb from limb...rather than uncoiling the pulse ox cord to attach it to his foot. Um...can you say somebody has PTSD (and for once, we're not talking about mama)? It was even worse than last time - at least least time, she was able to get blood pressures on 3 out of his 4 limbs. This time, she couldn't even get one. Oh, he was SO Pissed. He screamed through his sat check (amazingly, he was in the 80's), through the myriad blood pressure attempts, through height and weight check (31.5in (75%) and 22lb (25%) for anyone keeping track), and through the ekg. He didn't really stop screaming until Janellie left the room. (As much as I hate to admit it, it wasn't the first time I was glad he only has one working vocal cord!) But then the echo tech walked in and he started right back up. Actually, the echo didn't go as badly as it did last time. The echo tech let me hold him sitting back against me instead of lying him down and he really tolerated that better (they've never done his echo that way before - heart moms who have fiesty kids like Bodie, I highly recommend it).
Dr. Kim said the echo results were great - his heart function is the BEST it's ever been. Apparently, the echo tech had to look for awhile to find his triscupid valve regurgitation, which means it's almost nonexistent - that's a VERY good thing for a hypoplast!!! Awesome echo results. We're going down on his Enalapril a bit, in the hopes of coming off it at one point or another (if his heart function can support it) and leaving his Sildenafil the same, in the hopes of him eventually outgrowing it (since he's been satting great at his current dosage since we went up on it a couple of months ago). She thought all in all he looked GREAT, she sees no reason he won't be a good Fontan candidate when the time comes - and said we don't have to come back for 2 months! YAY!
Then, we got fitted for a 24-Holter Monitor. You can guess how great that went, given that it required attaching 5 leads to his chest and then taping them down. ;-) Bodie will wear it for 24 hours and then we'll send it back to check and see if he's having any episodes of tachycardia (if he is, we may need to go back on his Propanalol).
So yes, after today's buildup and then the screaming that ensued during it (oh, and did I mention that both kids have a cold with low grade fever, so are extra cranky at the moment?), mama needs a drink. So, I think I'll be off to have one while prepping packages for Sisters by Heart (by the way, have you donated yet??? If not, please hop on over and make a donation - we've already sent out packages, and HOPE!!! to 35 newly diagnosed families and are getting unbelievably positive feedback! But we need more donations to reach all the families we'd like to).
Please keep us in your prayers tomorrow and Friday. Tomorrow, I have an appointment with my orthopedist to look at my foot. If you can believe, I am STILL wearing a post-op boot, yes, going on 3 months now. When I saw on old friend last week, she said "oh my gosh, what did you do to your foot?" I started to explain when a look of recognition crossed her face and she said "ah, yes, that was when Bodie fell and hit his head - but I didn't remember anything happening to you." Yep, I know where I am in the pecking order around here - I've been hobbling around in this stupid shoe for 3 months, but people remember that Bodie fell on his head. HA! At any rate, please pray that enough healing has occurred that I can ditch this shoe once and for all and get back to my usual activities.
And on Friday, we're going to take a trip to Idyllwild, CA (approx 6,000 feet) to test Bodie out at elevation. A lot of hypoplasts tend to do okay at elevations, but it really depends on the kid and many just can't tolerate it. The fact that Bodie lives all the time at sea level makes it more likely that he'll struggle at higher elevation. Then, throw in his pulmonary hypertension and you're kind of setting him up for a BAD response to elevation. That's all fine and dandy, except that our annual family vacation is in Tahoe, which is a tad bit higher (like, oh 6,000 feet and change) than sea level. Dr. Kim has said that as long as Bodie is doing well at the time, she might be ok with us trying Tahoe out this summer. But we need to know if Bodie can even handle elevation. Hence, the trip this weekend. Please pray that Bodie handles elevation well and we have a great weekend!
And finally, a few recent pics of the crazy kids. :-)
Mental note...BUBBLE solution in the bubble machine...NOT dish soap. Oops. My silly girl... How cute is this smile???