Haven's third open heart, The Fontan, has been set, locked and loaded. Now we just have to get through this m*therf*cker.
Pre-op will be an 8 hour day on Friday, April 19th (which other families have told me can actually be the worst day of this whole ordeal just simply because of how long it is in length, all the poking prodding, waiting -- it's a bit of mind bender for a toddler). Home for the weekend and then admitted first thing Monday morning the 22nd for her catheterization (general anesthesia, breathing tube, etc.) where they will collect all the data from her heart that they will need to make a game plan for surgery day which will be Wednesday, April 24th. A few days in the ICU followed by a week to two weeks on the recovery floor.
Biggest bummer of all this so far is that I have to take her in and out of the hospital THREE times. Once on Friday, again on Monday, she'll stay overnight into Tuesday, just to be discharged Tuesday afternoon, so we can come back in first thing Wednesday morning for an undisclosed amount of time (could be 7 days, 10 days, two weeks -- they really can't say).
How does a toddler fair with that kind of back-n-forth? Probably not so well, I'm thinking. The whole exercise of trying to manage a three year old's feelings and mental comprehension of this experience, let alone general toddler exhaustion and overall world-turned-upside-down-for-no-apparent reason is starting to feel like the more challenging part in all this even in light of having to see my child's chest cut open and my baby on a ventilator again. But this is the road. Gotta keep walking it.
That's where the endurance comes in. We've been waiting for the "opportunity" to have this surgery for three and half years. The goal was to GET to this point. We're here. We've made it. We're lucky she's alive and we want this last fix to give her body the very thing it's starting to show signs that it's starting to lose. Less blue, more pink. Less out of breath, more energy to run around with other kids. A blood oxygen saturation level that will hopefully put less pressure on her heart and the rest of her body which is already working overtime to keep everything up and running -- less stress on her entire anatomy in general so we can have her around for 80 years and not just 40.
I would be lying if I said I wasn't having a hard time lately. The waiting is always the worst. Everybody knows it's harder to have something major like this ahead of you rather than behind you. Once it's "go-time" -- at least it will be exactly that. It'll be time TO DO this -- not just have to WAIT for it like I am right now. With two kids at home with me 24/7 and a husband who is working 18 hour days because part of what he does involves preparing taxes and this whole shit show starts (count 'em) four measly days after the tax deadline. I'm on my own. Trying like hell to come across to my kids like nothing's on my mind, nothing's bothering me, selling them a load of crap that I'm a happy, let's go find something to do together today kids! mom -- each and every day I wake up and try to ignore this freakin looming Fontan monster in my bedroom sitting on my chest. Next to baby #3, who's sitting on my bladder.
I guess that actually pretty much sums it up. I feel like I have an elephant and a baby rhinoceros sitting on my body. And while the pressure isn't entirely killing me....it's definitely making it a little hard to breathe. Metaphorically speaking, of course :)
I have every confidence in the world my daughter will sail this through this. Why wouldn't she? She has gone above and beyond what ANYONE expected when we were given this diagnosis in 2009. She is nothing like the child I was prepared to have when they explained what a baby with a half a heart can be like. She is amazing. She is totally resilient. She is a wonder to be reckoned with. And she's mine. I would walk across fire for her. I have. And I will again. Over and over and over again no matter how many times it takes. She is my most precious belonging and I will never let her go. Ever.
So there, Fontan. Take that. We know you are going to be a major pain-in-our ass, you are going to be scary and frightening, test every last nerve, and on certain days you are going to try and bend us until we break. But I have also learned that you won't be as bad as I thought you were going to be. Some parts of you will be easier to handle than I imagined. You'll test us but you won't break us -- and when we come out the other side -- we will god-willing be finished with this. Well this part of it anyway. Haven will always have a half a heart and there will be issues along the way that will be challenging for her and for us because of that fact. But there might be a world we can begin to live in after this without open heart surgery. Or at least without open heart surgeries in a row. Within three years. We can handle whatever else you've got up your sleeve for us down the road. Just get us through this last major hurdle so we can take a stab at the regular old hard road that is starting a family, a business, keeping a marriage together, and raising good kids.
And as tight as my chest feels right now -- during this god awful waiting-and-trying-to-keep-it-together-everyday leading up to April 19th -- on the other side -- there is an open window at the end of this, with a perfectly 70 degree summer day and gorgeous breeze coming in. All I have to do is make the slow and steady trek across the room, get over to that goddamn window so I can finally open it and feel that perfect air hit my face so for once I can finally breath again.
Please let the next month, or two, or whatever it's going to take....just please let it happen and then let it be over.
Remember Ella? She's the adorable three year old who is a little heart friend of Haven's and who had her Fontan surgery last year. I wrote about her and her family here. In case you need to be reminded of her adorableness....let me refresh your memory:
Well, her amazing patient, strong, resilient, funny, caring, thoughtful, and tough-as-nails mother is running a half marathon in honor of Ella. This family means more to me that I can describe. And Kate specifically is like my AA sponsor if there was such a thing for heart moms.
Please consider supporting Kate in her effort to run on behalf of her kids. Even a dollar would mean you are showing support of heart families who go through unbelievable lengths for their kids and the doctors who save these kids lives. PLEASE CONSIDER A SMALL DONATION BY CLICKINGHERE.
Everyone is hanging in there given that Ella still has her feeding tube and some recurring feeding issues, that both Ella and her brother Logan have to undergo cataract surgeries, Logan being the most recent patient at Children's and what was supposed to be a 45 minute surgery turned into a four hour unexpected ordeal that they have to repeat on his other eye again next month. While Ella's most recent open heart surgery, the Fontan (the same surgery Haven will undergo next month), seems to have been a success thus far, she too, will undergo her eye surgeries sometime this year as well.
Kate is like no one else I have ever met. She has sacrificed everything for her family -- is with them everyday, manages multiple doctor's visits, home visits, hospitalizations, insurance companies, schools, pharmacies, feeding tubes, medications, incisions, eye patches, dirty diapers, prescription glasses and more all while being a wife, sister, daughter, dog owner and friend to many. She is gorgeous, funny, smart, and somehow manages to keep herself healthy and sane amidst taking care of everyone else. Hence, the ability to even consider running a half marathon on top of everything. She has never run a half before and this will be just another major accomplishment she will be able to add to her list.
Being a parent is lot like running a marathon. Being a heart mom is like running that same marathon while wearing a baby Bjorn with a baby in it. Being Kate is like running a marathon with a baby strapped to your chest and you have to wear a surgical eye patch on both eyes.
So you know what? Let's give this special mom and dear friend of mine a little shout out and support her half marathon run on top of the unbelievable job this woman does just when she's standing still.
Knowing you are not alone and that people out there care about what you are going through -- well, it's just about the best feeling ever amidst a constant sense of worry, apprehension and struggle.
Haven turns three today. We have one more major surgery to go. Pretty amazing stuff. Congratulations Haven....you are an absolute wonder.
From this at birth:
To this at six months:
Back to this at seven months:
To this today after a very fortunate two year break from surgery:
We've got one more to go sweet baby girl in just eight weeks time. We'll be with you every step of the way. You're going to do great and then we'll be able to put another super cute photo of you and how smiley and resilient you are right here:
Happy 3rd Birthday Haven, we love you beyond measure.
Let's be honest. As a stay-at-home mom there are certain gifts from people that can really make a difference in your life.
Gift certificate to a nice restaurant? Not so much. You never go anywhere and even if you were able to treat yourself to a night out at a nice restaurant they would probably turn you away at the door because of their no sneakers and no sweatpants policy.
Gift certificate to a nail salon? Unless it's a plastic surgeon that applies nail polish AFTER completing two full hand transplants this one really doesn't do much either because getting a manicure during this stage in your life is like putting lipstick on a pig. A nice manicure also draws attention to the fact that you don't wear your wedding rings anymore and there are already enough people at the park that assume you are too old to be an unwed mother so you must be a recent divorce whose marriage didn't survive the first year of having a child.
Make-up, lotion, earrings. These are all extremely nice gestures but they end up in a baby proofed part of the house after one of your kids squirts the sweet smelling and super expensive lotion all over the rug in your room anyway. Or you put on the MAC mascara and lipstick just to find that your simply gorgeous lips and "come hither" lashes look ridiculous with your ratty old armpit stained gap T-shirt and maternity jeans that you are wearing even though you aren't pregnant anymore. With make-up on, you actually look like you did the walk-of-shame -- which we all know, sadly, is just not possible. R.I.P walk of shame, R.I.P.
So if you are lucky enough to even receive a gift from somebody during this selfless time in your life -- what are some good gifts to get?
A card with $50 bucks in it that says -- "Here, the next two co-pays at your therapy appointments are on me! Enjoy!"
Gourmet frozen dinners -- family size
House cleaner for a day
Monthly case of wine delivered to your house
Gift certificate for a massage
I am blessed to have the most amazing and supportive friends on the planet. Big time. One of my dearest and closest friends from childhood sent me an email that she had purchased TWO prenatal massages for me while I'm here in St. George. TWO. I mean seriously? Tears. While a full shoulder and back replacement would have been super nice too -- getting to have two freakin massages while I'm out here honestly feels the same to me right now as if Ellen Degeneres decided to gift me a minivan on her show. Totally amazing, thoughtful and perfect gift -- given to me for NO REASON other than my friend is like the nicest, most compassionate and caring person you will even meet. She also happens to be a massage therapist herself - so she knows how important massage is in my life right now. She gets it.
So I go to said massage and it's a male therapist. Okay. So I'm one of those people who always requests a female therapist -- if I'm even lucky enough to get a massage in the first place -- but you know beggars can't be choosers, and this guy owns the place, he's like 100 years old, so it's not like Bradley Cooper is going to be giving me these massages (a girl can dream), my girlfriend talked to him at length and I don't even know if he has other therapists that he works with -- so two massages with a male therapist. Totally fine.
First one goes great. He realizes that the current physical state I'm in pretty much resembles someone that has been in recent multiple car crashes. Some of my muscles would be better played like guitar strings than massaged....you get the picture. Let's just say he has his work cut out for him. But I don't care. I need this so f'ing bad that I basically just tell him -- listen buddy -- I got some serious shit going on with my body. Specifically my entire left side where two 30lb children sit on my hip pretty much all day long day, after, day, after day. Not to mention the repetitive action of picking them up, putting them down, lifting them both awkwardly into carseats, and then doing bench presses with my double stroller in the back of my jeep during my "down time" of not lifting them. See why I called it a daily Iron Man race? I should probably shave all the hair off my body and wear a sports bathing suit everyday -- just to see if it brings my race time down and makes it so that I have more time to myself at the end of the day. Replace this bike with a double stroller and I think you see what I'm getting at:
Unfortunately, people don't cheer from the sidelines as you bust your ass just to get through each and every day -- which honestly come to think of it -- would be super nice and probably help quite a bit.
So, by the second massage my buddy Michael knew exactly what needed to be done and so we got right to it and had him work on my shoulder which I totally appreciated and thought -- this whole thing is just awesome. This gift from my girlfriend is awesome, this guy is totally focusing on my problem areas -- I am in heaven. I actually feel like I might survive this time in my life if I could just get massages like this every once and while to counter act the permanent damage I know I'm doing to my body. I'm away from the kids for this totally blissful hour....let's just say I'm feeling pretty good.
Now, you have to remember, I'm pregnant. When you're pregnant you have to do sideline massage -- where you lie on your side instead of your back or stomach. As a massage therapist, you definitely have to know what you're doing to perform a massage like this because having the person lying on their side kind of fucks everything up a little bit. Well, I can't afford to have that happen. I NEED THIS MASSAGE BAD. So, Michael explained to me the best way to do this would mean I would have to hold the sheets a certain way -- you know to cover my lady bits -- so that he could give me an excellent massage and not a half-ass one.
Well...let's just say, I totally understood what I needed to do, I knew how and where to hold the sheets, this wasn't exactly my maiden voyage in getting a massage -- or a sideline massage at that -- so I totally knew what I needed to be doing to keep myself covered up. I was sure as hell not going to let a stupid ass sheet get in the way of making sure this guy pulverized my muscles in a way that I could finally feel some goddamn relief from my aching body.
Well as it turns out -- I didn't let the sheet get in the way. No siree. You can probably see where this is going, but I did get a little distracted with directing him and making sure he knew EXACTLY where on my shoulder I needed him to put all his focus and energy -- and I mean I all but asked him to dislocate my shoulder and just toss it in the trash it was hurting me so bad -- so I got a little too shoulder focused and not enough sheet focused.
This all happened in like three seconds, but right in the middle of everything he asked me to shift my weight and turn over. He, of course, being the professional here, had the sheets all figured out and put in such a way that I could do this maneuver without him ever seeing me at all. That is -- as long as I held up my end of the bargain and held the sheet in a certain way that would prevent anything from happening. This is where I totally dropped the ball.
I turned over and within a nanosecond -- the sheet is totally gone. Just like a magic trick, poof! I'm lying there totally naked with nothing between me and my buddy Mike (I figure this nude scene means we've reached a level in our relationship where I can call him Mike now) and he all but had a heart attack right there in the room, grabbing at anything he could find to cover me up because I had rolled over in a such a way that the sheets were all fucked up and tucked underneath me.
Ten maybe fifteen years ago I would have panicked and been super embarrassed...but after two kids and one on the way...It's going take a lot more than a 65 year old massage therapist to make me blush about my completely banged up, smashed up, and let's face it -- knocked up body. I mean seriously, what the hell do I have to prove or be bashful about. He on the other hand was either having some sort of a mild stroke because of his age or was thinking lawsuit -- I don't know -- but I honestly can say I was more worried about him and his reaction then my own nakedness. (Now that I'm writing this and looking back at this whole debacle -- maybe my naked body really IS that bad, and I almost did cause a stroke at the sight of it...hmmm.....I'll have to think about that one later).
Once there were sheets even half hazardly covering me up again I told him I was SO sorry that it was totally my fault, I was completely not holding my side of the sheet when he asked me to turn over...blah, blah, blah....until I could tell his breathing started to regulate again and he was assured I wasn't filing a lawsuit.
Anyway, needless-to-say, we awkwardly finished up the massage after the Full Monty exposure, lights had to be turned on at the end where we said goodbye and shook hands (so weird) and then I told him I would be happy to write a review online about how great the massage was (you know, just so there are no hard feelings, we're cool, kind of thing).
He said, "Bonny, I would really appreciate that, thank you." Obviously, I wasn't about to correct him. So we can just let this story be about the naked pregnant lady from Boston named Bonny who managed a full frontal around half way through a sideline massage and let bygones be bygones.
I'll just have to remember to write the review under the name Bonny :)
Hi there, how are you...Yes, there are five of us. Two adults...and can I get two high chairs and a booster seat? Actually...make it two booster seats and a high chair. No, wait, come to think of it -- three high chairs is probably safest. Honestly? You know what? Just forget it. We're gonna get going. I don't know what the hell we were thinking coming to a restaurant in the first place. Thanks anyway.
Yup. We're pregnant again. And while thankfully this time it was planned (earmuffs, Ronan) I still think about scenarios similar to the one above and am like, WHAT THE HELL WERE THINKING?!?!?!? I know, I know.....To Three or Not To Three....I always knew this was coming and yet I'm 17 weeks into it and thinking....oh lord. Honestly, this third kid cemented its place in our family a while ago -- it's been taunting me for years -- even when I tried to make the image go away. There was always this third child. "Oh, hi mum, ya it's me again -- your third. Thinking about not having me again are we? Ok, totally your choice if you don't want to try and get pregnant again -- but I'm just staying -- I either live inside your head talking to you like this for the rest of your life, or you can just go ahead and bring me into the world like you're supposed to, attempt to raise me into a functioning adult who can have a civilized conversation with you face-to-face over a glass of wine one day. So, have your doubts -- but I'm fine living inside your head or out of it. Totally your call. So, I knew. I knew this little one was waiting to catch a ride on the mollygog-uterus-train and make its entrance one way or another. So here we are. I gonna have to start going back to church or something because we are literally going to need a higher power to get us through this next and FINAL pregnancy. And asking other people to pray for us is just not going to cut it. I'm going to need to put some serious time-in if I'm going to get the kind of help I'm gonna need from above. But I'm thinking with the Pope shenanigans going-on -- my calls are likely to go unanswered anyway. So back to being an ex-catholic who still hopes someone is looking down on her even though she doesn't practice or believe anymore. So what does this mean? Well first of all -- we have to start by counting our blessings. I barely finished writing To Three or Not To Three and I was pregnant again. Getting pregnant is NOT an easy thing to just go and do in an afternoon for a lot of people. In our case, it felt like the conversation itself conceived a child. So we know how lucky we are. Really. But we also know how screwed we are. Three kids under three and half is about as smart as driving down a dark rural country road in Ireland without the lights on (I've actually done that before -- it's clearly a Ger story, and a story for another day at that -- but let me just say....it's f'ing terrifying). So smart decision? No. The right decision? Yes. Our lives right now -- with me at home, a three year old with an impending heart surgery, an 18 month old about to become a toddler himself, and a husband who is working two jobs, pretty much 24/7 seven days a week.... it's a lot like...well....a balsa wood structure competition. Didn't see that analogy coming did you? Well here's a visual....this is pretty much what we're knowingly doing with our lives -- not as bad as Russian Roulette but close:
Too bad these sweet little geeks don't realize just how much shit is about to go down after they graduate from high school and their adult life starts to replicate what used to be a fun little science project. No one ever explains to you that YOU will become the balsa wood bridge in shop class and that the whole project is a metaphor for what lies ahead and how hard life can be. You don't even get a complementary pair of safety goggles when you enter the real world. What the hell ever happen to Safety First, people?
So why is it right to add on the weight, the pressure, the stress of a third child? Well, the obvious reason is because it's already happening. But surprisingly for the "pro-life"rs out there that's not actually why. It's right because we decided to do it and we decided to do it KNOWING how freaking hard it was going to be. It was an eyes-wide-open-type decision and we gotta stand by it and know deep, deep, deep, deep, deep (have I made my point here?) deep, way deep down that we made the right decision.
But having the vision of the third child and logistically managing the reality and the day-to-day of a third child are completely different things. We have a lot of work ahead of us and by we I mean me. I'm kidding. I'm half kidding. No, I'm not kidding at all. While my husband has been working at an ungodly clip for longer than I can remember now -- and worse than even that -- it has become totally NORMAL in our lives for him to burn the midnight oil like de does -- that this is not exactly a healthy way for him to be living and god willing their won't be any longterm consequences health or otherwise with just how much stress and pressure he is under in order to support what will be a family of five.
But as most mother's can attest to...the child rearing years are different for the dad than they are the mum. I'm not insinuating here that it's a competition because I'm winning anyway -- but let's be honest -- in a lot of ways even with all the pressure in the world on his shoulders -- he's the same guy, with the same body and mind (ok that's not fair -- his body is falling apart and he's not getting any younger -- but his mind is still totally intact -- so that's a plus, right?) Where as three pregnancies in three years and the physical work it takes to be a stay-at-home mom is just a tad different from his day-to-day no matter how stressful it is. Being a stay-at-home-mother (in my humble opinion) is like waking up every single morning to immediately run an Iron Man race while simultaneously participating in some kind of mental health study sponsored by McLean Hospital. At least my husband is qualified to do the work he does everyday. Me? Not so much. I am "working" from 7AM-9PM, seven days a week, without any supervision and without any fucking clue what I'm doing half the time...wash, rinse, repeat, wash, rinse, repeat. So, I can't really say that my body or my mind are really intact at this point. And being a woman with hormones through all this is not exactly a plus. My own body is attacking my sanity? Doesn't really make a hell of lot of sense for the survival of the species to throw hormones into the mix of the person bearing the children. Not cool, God. Not cool.
But even in light of all this -- we decided to throw caution to the wind on this one. And that's mostly because a fair amount of heavy duty shit played into our decision to add on more weight to the balsa wood structure and have yet another child -- knowing that we are greatly magnifying the current insanity that is our lives. Looking back at the past three years -- and in particular the heart condition diagnosis during my first pregnancy -- that could have gone one of two ways. I could have easily made every effort possible to not ever get pregnant again for fear of what could happen the second time around. And many heart families make this decision and I completely and whole heartedly understand their reasoning. And then there is our way and the road we have chosen. We have learned some amazing lessons since we started our marriage and family and in our case these lessons led us to the road we're currently on:
1. We have never once believed in the illusion that marriage is a honkey dorey love fest where you find your soul mate, make beautiful music together, and grow old holding hands with that same sparkle in your eye you had for each other at 25. We carefully chose one another on probably a more practical level than would be considered romanic or sexy -- but was thoroughly based on love, respect, and a shared agreement to roll our sleeves up and build this damn balsa wood structure together. And we had the same goal that it had to be strong. Like really, really strong. Strong enough to carry a shit ton of weight strong. And that was before we actually realized how much weight they planned to start putting on....one by one by one....
2. Haven's heart condition schooled us in the lesson that you are not in control of what happens in your life. Really, ever. You can try to be in control and honestly -- you should try. Amazing things happen when people go after their goals, work hard, stay healthy, make good decisions, and take care of one another. You should try to control your life in the same way you train to run a marathon. You get as healthy and as strong as you can to run the race -- but try as you may -- you will not dictate how that race goes -- even with proper training. Everything else -- even when the scariness of it all brings you to your knees and you think you can't simply survive something -- even then, especially then -- you gotta let go of the reigns -- cause they aren't for you to hold in the first place. You gotta do your best in life without ever having the luxury of knowing the final outcome. Over and over and over again.
3. We have to believe that we are walking the walk exactly as we should be. That every challenge and every time we run out of gas (and man we have run out of gas a few times and will run out of gas again soon!) is a temporary struggle that will be survived. We will make all kinds of struggles and sacrifices in our lives and it's not so much that in the end we all sit around and talk about how "it was all worth it....." Cause I gotta call bullshit on that. Some of it isn't worth it. It's just fucking not. It's hard. It hurts. You do get run down, you get worn out, you run out of emotional and even physical strength sometimes and you're not getting any of that time or any of those muscles back. I'm sorry but it's gone. That's the deal. That's the true sacrifice that is made. But instead of having my retirement, with my three kids around me as my life's greatest accomplishments as my end goal where I sit back and try to convince myself, "It was all worth it, everything I gave up, every last ounce of myself that I sacrificed was worth it in the end." That just doesn't ring true for me. Because what I think of as the end of the road accomplishment for me in life? It's is going to have to have been the actual road. I have learned more to keep moving, keep getting up, never be complacent, never accepting my faults or the things that hold me back but struggle like hell to commit to change things about myself and to just. keep. moving. So.....I guess I want to be able to survive the road. Not necessarily get to the end of it in one piece.
I was lucky enough to go to Egypt when I was 18 years old. I met an Egyptologist there (seriously, they exist) who obviously with a title like that spends a lot of his time thinking hard about one of the oldest cultures in human existence. He got into a conversation with me and he said to me, "it is already written in your book. The next chapter has already been written and now you must go and discover it but int he end it has already been decided." I'll never forget that.
Similarly, a couple, who are two of my closest and dearest friends have always had a saying that is displayed in their offices, in their home, at the end of the their emails, in cards they have given me -- it always reminds me just how awesome these two are and why I like them in the first place because of how much this quote resonates with me, "Everything will be okay in the end, if it's not okay, it's not the end."
So with that? Bring it on, baby. Let the balsa wood competition begin. We do not have on rose colored glasses about your arrival or even the the next several years. Hell, we don't even have safety glasses on. We know how difficult and challenging all of this is undoubtedly going to be -- and man o' man this is year alone is going to be one hell of a year -- but we as a family will survive this too. It won't always be this hard. But just a heads up we're probably not 100% prepared because how could we be, but we're committed to you taking this road with us -- wherever it goes and whatever it brings.
We'll take what we can from the lessons we've learned and forge ahead, you are already written in our book, you are the next chapter, and in the end we just have to believe that everything will finally be ok.
And as tight as my chest feels right now -- during this god awful waiting-and-trying-to-keep-it-together-everyday leading up to April 19th -- on the other side -- there is an open window at the end of this, with a perfectly 70 degree summer day and gorgeous breeze coming in. All I have to do is make the slow and steady trek across the room, get over to that goddamn window so I can finally open it and feel that perfect air hit my face so for once I can finally breath again. 
