Thursday, December 30, 2010

Keep On Keepin' On

We are now a week and 2 days post-op and Jillian is still doing good :) In just a few hours she will be done with ALL of her medications and feeds. Slowly but surely all the tubes and wires and bandages are making their way off our little girl and into the trash!
Since the last post I wrote she has been taken off the medication to help her heart pump (Milrinone) and also the "blood thinner" type medication (Heparin). She has had both lines in her groin taken out and is on very little oxygen. She still has a PICC line in her left arm, but as far as her accessories go, that's pretty much it, other than monitors to measure blood flow to the upper and lower parts of her body, a blood pressure cuff and EKG wires. Really, though, she's doing fantastic! She looks more and more like our baby girl everyday :)
So, now that she is off of just about everything she was on, our biggest hurdle is feeding... Right now she is getting a continuous feed of breast milk via a feeding tube, but starting tomorrow they will only feed her through it once every 3 hours. Her doctors and nurses are hoping this will help her to feel hungry and will make her want to eat. We are offering her very small amounts of breast milk that I have pumped from a bottle- only 5 or so CC's every few hours, but these feedings seem to upset her tummy some so it is a slow process. Patience is not a very big strength of JR's or mine so we have to constantly remind ourselves that she is in charge! (Kind of a scary power to give a two week old!)
I'd be lying if I said I wasn't tired of being at the hospital already... I'm tired of the crappy "beds" and the food. I'm tired of sharing a bathroom with what feels like a million strangers and using a "shower" room that never really feels quite clean enough. I'm tired of not being able to pick up MY baby without someone else handing her to me... indeed we never have picked her up on our own. I'm tired of only being able to talk to Oli and Athan on the phone or see them on Skype. I'm tired of being away from my husband. And mostly (especially on days like today when it's snowy out and I just want to cuddle up on the couch with JR and all THREE of my kids), I'm tired of not being home together as a whole family.
BUT, Jillian is making progress every day. It's amazing to watch her- to see her stubbornness and attitude coming out already (that will be fun later on...) and to watch her continue to surprise everyone around her. It's amazing to see her progress everyday and sometimes even hour to hour. And when she's awake and just stares at me, she melts my heart, and I know that in the end, this will all be worth it.

Sunday, December 26, 2010

Jilly the RoCkStAr

We are 5 days post-op and Jilly is doing amazing! We are so proud of our little rockstar :)
Yesterday for Christmas she got 3 of her 4 chest tubes out (along with a zoo of stuffed animals to keep her company in her isolette!) and continued to get stronger and show the doctors and nurses who's boss ;) Her morphine and dopamine drips were turned off. She began getting a small amount of breast milk through a feeding tube and all of her numbers and vital signs looked great :) Oli and Athan gave her two girl superheros to put in her room to keep watch over her. Really, though, we know that the three of them are the superheros for being so strong throughout all of this.
Today was an even bigger day- her 4th chest tube was taken out and she was taken off of her ventilator. She has been breathing on her own and doing fantastic for about 4 hours now. With a little luck I might even  be able to hold her tonight for the first time in 5 days :) She has also been moved from an isolette to a hospital crib, which has been given quite the girly girl, princessy feel thanks to a nice, big soft pink blanky draped over the top like a canopy. 
Over the last few days her swelling has gone down a ton- she's finally beginning to look like the baby she was before surgery. Even her incision looks good :)
Jilly's favorite nurse, Gillian, says she is doing better than a lot of babies who go through this same surgery. She seems to be tolerating the surgery and the recovery pretty well, so even though this is terribly hard on us, we are cautiously optimistic for the days and weeks ahead.

Thursday, December 23, 2010

Welcome to the World, Jillian Lylah Janik

Clearly I am late posting this, but let's just say we've been busy the last 8 days... So, in a nutshell here is what the last 8 days have looked like for us:
Jillian Lylah was born Wednesday December 15th at 9:22 pm after 12 intense hours of labor... okay, that's a lie- it was really only 45 minutes of "intense" labor and roughly 11 hours and 15 minutes of hanging around...
She tipped the scales at an enormous 5 pounds 15 ounces and was 19 and 3/4 inches tall. She came into this world screaming at the top of her lungs and had lots of DARK HAIR!!! She was greeted by JR and me and her "Aunt" Tammy, along with the doctor, nurse and the 3 member NICU team.
Shortly after making her grand entrance into this world, she was taken to the NICU at Presbyterian St. Lukes Hospital where they evaluated her and started preparing her for surgery.

Grandpappy and Grandma Bink came to meet her the next afternoon and after 20 or so hours JR and I were finally able to hold her for more than the 5 or 10 minutes we were allowed after her birth. We scrutinized her every detail, coming to the conclusion that she somehow looks like both Oli and Athan, has JR's almost everything (except for my nose!) and apparently has my temper- which should come in useful for her over the next few years :) 
Friday she was transported via Denver Flight for Life in an ambulance going roughly 10-15 miles per hour under the speed limit to The Children's Hospital Cardiac Intensive Care Unit (CICU) where many more doctors and nurses poked and prodded her. Grandma Donna and cousin Taylor, Uncle Ryan and Aunt Sonia came to visit her and JR and I got to visit Oli and Athan for the first time in a few days :) :) :)
Saturday brought Uncle Ryan and Aunt Sonia back, along with Aunt Vicki and Uncle Shane.
Sunday was a very important day- she met big brothers Oli and Athan for the first time! Oli's immediate reaction was that, "Aww! Her's is cute!" but later confessed to his Uncle Chad that she didn't look very good because "she doesn't have any clothes on!" and Athan observed that, "Jilly is not in your tummy..."  Other visitors that day included Grandma Donna, Grandpa Gene, Uncle Chad, Uncle Blaine, Uncle Eric, Aunt Jenna (and cousin Moriah!) and Grandma Bink and Grandpappy.
Monday was spent eating like a little piggy, being cuddled by mommy and daddy, surprising doctors and nurses by how well she was doing, and getting a pic line put in for surgery. Also, Aunt Tammy came to visit again and escorted JR and I out of the hospital for a bit to enjoy some non-hospital food ;)
Monday night into Tuesday morning was hard for JR and I knowing that the next morning they would be taking our perfect, beautiful baby girl away from us early in the morning for surgery... Not much sleep was gotten, but plenty of cuddling, hugging and kissing our baby girl took place. She melted our hearts with her strong willed personality and shocked us with her beauty everytime she opened her eyes. Our little girl truly is a doll... Many, MANY tears were shed as the time for them to come get her was quickly approaching. Finally they came and took her away, us just asking her to be strong and keep fighting.
Tuesday was spent in a haze waiting with a knotted stomach and complete anxiousness for every update to come...
Finally 9 hours after leaving us, we were FINALLY allowed to see our baby girl again. Words can't describe what it was like seeing her for the first time post surgery, but regardless of how swollen, black and blue, and covered in wires and tubes she was-  not to mention the fact that her chest was left open with only a white patch covering her beating heart- she was and still is our perfect, beautiful, sweet, strong baby girl. She came out of the operating room doing amazingly well, surprising the doctors once again.
About 12 hours after surgery, she had a little slump in her vitals- something that happens with all babies at some point after this surgery. She spent the next 24 or so hours taking the nurses and doctors on a roller coaster ride before finally deciding to level herself out and behave so that this morning (Thursday, Dec. 23rd) she could have her chest sewn shut. Our little girl is whole once again :)
She is doing amazingly well. She is awake and alert and responds to our voices. She holds JR's fingers and loves for her cheek to be stroked. All of her vitals and most important her cardiac markers look very good. She is winning over the hearts of the doctors and nurses and continues to amaze us beyond words.
We're so proud of our little girl for having the will to fight as hard as she is :)
We are so very, VERY thankful for all the thoughts and prayers and well wishes that have been sent our way. A million thank you's cannot thank everyone enough...

Tuesday, December 14, 2010

Dear Jilly

Dear Jilly,
Tomorrow you could enter this world. Well, I guess technically, if you felt like it, you could come today. But you seem to be awfully cozy in there so... I have my doubts about today.
Assuming you wait until tomorrow (and the doctors decide to induce) you will have only one last ultrasound before you enter this crazy world of ours. Only one more time will doctors have to poke and prod you while you are still in my tummy. I know you're tired of it- your kicks at the magic ultrasound wand every time they try to look at you have not gone unnoticed... But, hang in there little girl, there should be only one of those left. I wish I could say that would be the last time anyone has to poke and prod at you, but sadly, there will be much, much more of that once you're on the outside. If I could trade places with you I would and I know Daddy feels the same way too...
We can't wait for you to be in our arms. We can't wait for you to just be here with us. And even though shortly after you are born, the doctors will wisk you away to start their poking and prodding nonsense on the outside, just know we love you more than words can say and if we could, we would change all of this.
Your big brothers are getting excited and anxious to see you :)  Oli asks every day, "Is Jilly almost coming out?" and says he can't wait to hold you and say, "Wow! Her's is heavy!" Unlike the doctors, he thinks you are going to be a tank! Although he tries to be anti-girl toys right now, I think, like Daddy, he can't wait to have a tea party with you. He told us the other day he wishes he could help fix your broken heart. Already your oldest brother has an infinite amount of love for you.
Athan is excited too, although he doesn't understand quite as much as Oli does. Every day he lifts my shirt to talk to you- because talking through my shirt just won't do for him. He has a list of things he wants to teach you, like jumping, and watching movies, and playing superheros, but mostly, he says, he wants to teach you to be naughty. Yes, Jilly, you already have a partner in crime waiting for you on the outside. And when that happens, the outside is going to be in trouble! It's a good thing we have a few superheros flying around this house to keep us all safe...
Daddy and I? We're excited too :)  We're scared for you and what you will go through. We know it's not fair to have to ask for you to fight so hard from the moment you enter this world, and we are so, so sorry about that, but please know we are here fighting with you. To say our hearts are broken for you seems so wrong, now that we have been shown twice what a truly broken heart is. So, I'll just say our hearts ache for you. They hurt for what you have to go through, but somehow, because of this they are whole and are full of love.
We have a rough road ahead, but we will travel it as a family. Whether you come today, or tomorrow, or next week, we can't wait to finally have you in our arms. We can't wait for our family to be complete. We can't wait for our last little puzzle piece to be put in place.

Sunday, December 12, 2010

The Wait is Almost Over...

In a few days, well any day, really, Jilly will be here :)
Wow, how did this go so fast? It seems like this entire pregnancy has flown by... I'm so excited to meet her and have her in my arms and try to figure out if she looks like JR or me. I'm excited to see if she really does have hair. And I can't wait to see what Oli and Athan think of her.
We still don't have a real definite plan. But, I guess that's how it goes with most babies anyway. We have one last appoinmtent at Presbyterian St. Luke's in Denver on Wednesday and they may- or may not- induce on that day. It feels so close, yet so far away...
I have to admit, it's hard not to feel a little bit robbed of this pregnancy. JR and I have spent the last 15 weeks worrying about her and worrying about the boys and worrying about normal everyday life stuff that we would have worried about anyway, that we haven't really had time to just enjoy this. Yesterday marked 38 weeks. How am I 38 weeks already? Where did all that time go? Ah... it probably passed along with all the ups and downs. 
On November 30th we had an ultrasound to check my amniotic fluid levels and her growth and they estimated her at only 4 pounds 12 ounces. My heart sank when they told us this... We were expecting her to be right around 6 pounds at that time. She needs to be as big as possible for surgery and this was not a good sign. But this last Friday, only 10 days later, we had another ultrasound and this time they estimated her at 6 pounds 8 ounces! Much, much better as that is right where the surgeons would prefer her to be for surgery. We can relax, if only a little, once again.
I'm not sure that I can even put into words all the different emotions that I'm feeling. I'm excited and scared, of course (although I think that would be true of any pregnancy). I'm anxious. I'm nervous. Sometimes I think I'm "ready" for all of this, even though I know that I'm not, because really, no amount of "planning" (of which we successfully have almost none) can prepare us for this. 
I'm not ready to see my baby- another one of my babies- like that, even if I have seen it before. I don't want to search for her through tubes and wires and machines. I don't want to see where they had to cut her chest open to fix her heart- because it should have just been perfect to begin with. I'm not ready to fall half-asleep to the noise of the machine that will be keeping my daughter alive. I'm not ready for all the alarms to go off when her heart rate gets too high or too low or when her oxygen levels aren't just right. I'm not ready to just sit and watch her fight for her life and not even be able to hold her or comfort her, except to maybe stroke her cheek. I'm not ready to be away from JR and especially not Oli and Athan for 6 to 8 weeks or even 2 days. In the almost 4 years that we've been parents we've been away from our boys for a total of 4 or maybe 5 nights. I'm just not ready. Not really...
Some people say, "well you've already been through this once, so you know what to expect!" And apparently that should make it all better- but no, we have not been through this already. We have been through something similar, yes, but not this. And even if it had been the exact same situation, no, it would not make it better...
I guess all I can do over the next few days is really try to just enjoy these last few moments of (mostly) chaos free life- like right now, when Oli is asleep in our bed next to me snoring like he's 40 (the whole reason I'm up during the 5 o'clock hour anyway)- because wether we're ready or not, Jilly will be here any day now. :)

Friday, November 19, 2010

This Is Bigger Than Us

From the very beginning, when all this Hypoplastic Left Heart Syndrome stuff came up and we were still numb from shock and in disbelief, JR and I have talked about how this is "bigger than us". As the days and weeks continue to go  by, I'm realizing more and more how true that statement is. Simpy put, this is just something that we cannot do alone.  I don't know if this is supposed to open our eyes to the fact that life is short. Or show us all the things we have. I don't know if this is supposed to be our way of searching out God- because in a lot of ways we have- or if this is supposed to push our lives in a different direction. I know we'll never be able to look back at this time and say, "Ahh... so that's why that happened..." There's no doubt in my mind that we'll never know for sure.
It amazes me and it warms my heart to see how many people care about Jillian. How many people care about my family. How many people care about us. Through all of this, so many people have "come out of the woodwork" so to speak, to offer encouragement, a kind word, emotional support and of course outfits and blankets and shoes of pink and purple and all things baby girl :)  Some people have given us books in the hopes of helping us cope. Some people have sent me messages on facebook, just to say, "Hey, I'm here and I'm thinking of you guys." One dear friend left a message saying, "You don't realize it, but you have a silent army behind you, cheering you on along the way." Sitting here today, just a few weeks before Jillian joins us, I know already that she is an amazing little girl. Jilly's heart has touched other people's hearts here in Colorado, South Dakota, New York, Minnesota, Wyoming, Missouri, Arizona, Tennessee and Texas and even Scotland, I do believe- and those are just the places that I can think of off the top of my head.
Already Jilly has touched so many lives, but mostly, she's touched ours. While this is, without a doubt, the hardest thing we have ever had to go through, there are some positives that have come to the surface, too. I'm reminded of the power of love, the devotion of family and the faithfullness of friends- even those that I haven't spoken to or seen in  very, very long time. Our families have rallied behind us, doing everything they can to make this as easy as possible for us and especially for Oli and Athan. Our friends have given us unconditional emotional support- despite sometimes having their own personal struggles and hells to deal with. And my husband, the love of my life, has somehow become an even more amazing husband and father than he was before- without his love there is no possible way I could get through this with the illusion of strength that I've managed so far. For these things from all these people, I am forever grateful.

Monday, November 8, 2010

What's New

I realized it's been a while since I last wrote something here. And whether or not anyone is actually interested or not, I think it will be good to have this to look back on someday, after all of this is over and done with. 
So, where are we at...? I am now 33 weeks and a couple of days and on bed rest. I have nothing to do but sit here and try to grow Jilly bigger! Last week at my 32 week appointment and ultrasound my docs saw that my amniotic fluid is quite a bit lower than they would like it to be, so they put me on bed rest about 2 weeks early. I managed to get away with not abiding by the "bed" part of the equation for the rest of last week and the weekend, although I did try to adhere to the "rest"part... more or less. But now, Monday has rolled around and it's officially time for the two to come together. I'm about 4 hours into 6 weeks and WOW! I never would have thought having absolutely nothing to do and having to stick to that would be so hard. Even Oli is getting on me. I went downstairs to refill my water and he said, "No Mommy! You go back upstairs and rest!" Aww... gotta love 3 year olds :) 
What else, what else... hmm... next week I will be going back for another ultrasound to check my fluid levels again and for my 34 week appointment. Starting with my 36 week appointment all my OB care will be transferred to the good folks at Presbyterian St. Luke's so we'll be driving to Denver weekly... let's hope it doesn't snow too much, although just now I probably jinxed myself... We'll have one more appointment to look at Jilly's heart at Children's on November 30th and then- we wait. As of right now we're hoping to make it to 39 weeks- December 18th- and should induce then, or around then. Then the real fun will begin... 
In a small little nut shell that's what's going on. I had a few rough days emotionally, well and physically too, last week, but having my mom here has helped that a bit. More or less I'm in good spirits, for now, and just trying to find ways to pass the time. Only 4 1/2 to 5 1/2 weeks to go! Thank God for my Mom... and Pandora radio!

Wednesday, October 27, 2010

This Can't Possibly Be Our Life...

This was not part of the plan. 
As the weeks until Jillian's birth have quickly dwindled down into the single digits, I've found myself wondering more and more, who's life this is that we're living. I mean, clearly, this is not our life. This was not part of the plan, even if the plan wasn't clearly laid out. 
Last night, JR and I were talking about how fast this is all going. How fast Jillian's birth, which really, has become how fast her (first) surgery, is creeping up on us. And we? Are. Not. Ready. Period. 
We know that it has to be better that we found out about Jilly's defects ahead of time. But, lately we've just felt robbed by it. Our anticipation for her arrival has become less excited and more worried. Instead of only having 5-8 weeks left to get everything ready for her to come home, we still have... a lot more than that, once hospital time is figured into the equation. Instead of wondering how the heck I'm going to manage being home with an almost 4 year old, 2 and a half year old and newborn, I'm wondering how I'm going to manage being away from my husband and my boys, in order to be with my daughter in the hospital, willing her to fight for her life. I don't know what size clothes to buy her, because I don't have any clue when she'll be home. After 6-8 weeks in the hospital will she be newborn sized still? Will she be preemie sized thanks to the surgery? Or will she be bigger? 
Right now we should be eagerly anticipating the day our family becomes complete. But this diagnosis has made us wish we could slow down time. It has us hoping to somehow drag out this pregnancy as long as possible in order to give her the best chance possible. Her kicks and rolls and stretches should be giving us nothing but joy and happiness, but they've somehow become a constant reminder of the fight she will have on her hands from the moment she is born. 
We're having to plan for the boys to be at the hospital when she's born so they can quickly see her before she is taken away and prepared for surgery. We don't know if they'll be able to hold her. Or kiss her. We're just hoping they'll be able to see her. They won't be able to see her for at least a week after her surgery. And that? Sucks. 
So, for now we're just trying to stay positive. Trying to concentrate on what we can do. Trying to "keep her in there" for as long as possible. 
I guess we're still adjusting to this life.

Thursday, October 14, 2010


I feel like everything has caught up with me today. Emotionally and physically I'm worn out. I've tried to be strong for the last 6 weeks but... I feel like that's slipping away. I'm starting to realize that through all of this I need to be honest with myself. Yes, I'm optimistic. Yes, I'm hopeful. Yes, I believe we're making the right decisions. But I'm also hurting. Deep down, this just hurts. 

Through all of this I've had amazing people come forward in support for us. I've met some people who have gone through this, and other things parents shouldn't have to go through, too. And while all of that makes me feel better, it still can't heal the hurt. It doesn't get rid of the guilt I feel and it doesn't completely ease the pain. It doesn't make this go away and it doesn't answer any questions. I'd like to say that my heart is broken, but I've been shown now, twice, what a truly broken heart is. I'd like to say that something positive has to come out of this, and honestly I do feel that way, but why does there have to be so much pain first? 

I've asked myself a million times why this is happening? Why does this have to happen to my family? Why is it my kids that have to go through this? Even though it will be Jillian going through the surgeries (and Athan before) it is ALL three of my kids and ALL of us who are affected by this. Why does it have to be MY kids? Why does it have to be JR? And why does it have to be me?

It's not like I'd wish this upon anyone else. But I wouldn't wish it for myself, either. It all just seems so unfair. I hate to host my own pity party- truly I have tried my best not to- but really? Two babies with heart conditions? Wasn't one enough? And why three or more surgeries this time? What did I do to deserve this? Was there something I was supposed to learn after Athan's surgery that I didn't? Some lesson that I was blind to, that if I'd understood would have changed all of this? Did I want a little girl too much? Did I wish too hard for another baby to make my family "complete" instead of just being happy with what and who I had? Why is it me who has to excitedly and at the exact same time apprehensively count down the weeks until she is born? Why is it us who have to try to put on a happy, brave face everyday when really we're mad and scared and hurt inside? Why is it that we are the ones that have to face the fact that our baby might not come home with us? I just don't get it.

The rational side of me wants to say its just something in our DNA. One of those crazy things where you have to have two parents who carry a recessive trait and JR and I both just happen to have it and twice now that recessive trait has decided to come through... or something like that... High School genetics was a long time ago... 

But then there's this other side of me.This side that asks all these questions and wants answers that aren't based in science. Who cares if it's genetics? The fact still remains that this is happening to MY family. The truth is, it will be MY baby that I have to watch fighting for life- again. Something so many people- myself included with Oli- take for granted. I don't blame them, and I don't blame myself for doing it with Oli. After all, that is how its supposed to be. A newborn shouldn't be required to fight for their life from the second they are born. So how come some of them do?

Tuesday, October 12, 2010

More Than A Diagnosis

When I look at Oli I think of him as my super sensitive 3 year old who, like his mommy, needs his freak out moments almost daily in order to keep his emotions in check. In him I see a caring, loving, smart, funny little boy, who loves his little brother and is wise beyond his years about what his little sister will be going through, even if he doesn't quite understand. He will share his toys with Athan, even though anyone can see how hard it is for him to do what he thinks is right instead of what he really wants to do. And when we tell him he doesn't have to share his toys with his brother all the time, he says its okay... Athan can have "it", even though it's clearly tearing him up inside. At times he's more rational than JR and I put together. He's profound. He's emotional. He's a gentle soul.
When I look at Athan I don't see a COA (Coarctation of the Aorta) baby. I see a free spirited, march to the beat of my own drummer- scratch that- march to the beat of my own band, fearless, two year old. I see mischief in his eyes and mayhem in his path. He's more stubborn than any human should be allowed to be and he's down right ornery. But, he has a kindness deep inside him, that when it makes it's way to the surface will melt anybody's heart. He is nothing short of life. 
So, why is it that when I think of Jillian, all I see is doctors appointments, surgeries and trips to the ER? Why can I only think of the things she won't be able to do and not the possibilities she will have in front of her? Why is it that when I look at her clothes I somehow manage to see past the fabric and only think of the scar on her chest that they will be covering? Why can't I picture her as more than just a Hypoplastic Left Heart Syndrome baby? Why can't I see her as more than just a heart kid? More than a diagnosis... 
Last night I took a few minutes to just lay on my bed. To just take some time to relax for a few minutes. Jillian gave me a nice hard kick, almost to say, "Hey Mom! I'm here!" And for the first time in the last five or six weeks I let my mind wander beyond her diagnosis. I let myself think about her and not that she'll have a scar on her chest. I let myself wonder about what her personality will be like- will she be kind and sensitive like Oli? Or maybe she'll be like Athan- too busy living life to think too much about the world around her.
It's like that one little kick reminded me that she is more than just a diagnosis. She's more than heart disease. She's our daughter. Oli and Athan's sister. She's already loved by so many. And she will be a fighter. She's our little Jilly Bean. 

Thursday, October 7, 2010

Leave It To A Surgeon To Make It So... REAL

Last Thursday we met with our doctors at Children's Hospital. The last time we were there, we left feeling completely overwhelmed with our heads in the clouds. We weren't happy about our situation. We didn't fully understand it. And we certainly didn't think it was in the least bit fair, but at the very, very least we did feel somewhat optimistic. After all, we still had four months before we really had to start worrying about anything. Four months before Jillian was due. Four months before we would actually be going through anything. 
Oh how wrong we were. 
Having four weeks between our first Children's appointment and the one we had Thursday gave us time- nothing but time- to sit and think and contemplate and question and worry about everything. The thing is, no matter how much time we spent thinking and contemplating and questioning and worrying, all of this still somehow didn't feel real. Not to me at least... To me it was this foreign, abstract, crazy thing that all the doctors, OUR, doctors were talking about. I knew they were talking about us and about our baby but, really, who wants to embrace that? And, admittedly, I think my new sense of realism that I have gained after meeting with Mr. Surgeon, is probably still no where near what reality will actually be. 
I'm not sure what we expected to happen when meeting with Mr. Surgeon. My guess is, having been around nothing but mostly positive, optimistic-ish, on the verge of sensitive, caring doctors, we were caught off-guard by the blunt, full disclosure, no sugar coating conversation we had with the surgeon. And while we'd had a taste of Mr. Surgeon before, thanks to him being the one that operated on Athan's heart, we'd apparently forgotten exactly how his bedside manner was. 
This is not to say he was unprofessional or anything like that. He said the same things our  cardiologist has said (although, maybe slightly less friendly) regarding risks and survival rates and the fact that basically everything has to go "right" for this to all work out the way we want it to. He explained the surgeries to us in the same way our cardiologist did. He explained in detail the importance of recovery, what she'll look like after surgery (although nothing can really prepare us for that) and to plan for at least 6 weeks recovery in the hospital. He didn't really tell us anything we hadn't already heard. The thing is, somehow, something about him, maybe just because he will be the one cutting open our little girl, made this all so damn real! And we weren't ready for that. Not that day, not today, not tomorrow. For me, it will only need to be real when "it" is actually happening, but until then, Mr. Surgeon has stirred something inside of me... something that is little by little making me accept that this is us, this is what we're going through. Something that is screaming out that this is our life.

Thursday, September 30, 2010

More Ups and Downs

Tuesday we had another ultrasound to look at Jillian's adrenal gland. In all the craziness of the hypoplastic left heart diagnosis, this was something I'd more or less forgotten all about. Every now and then my mind visited this other "issue" but we were told it was nothing to worry about, so I didn't. Which is a miracle, because I? Worry about everything. So the ultrasound showed that the adrenal gland looked normal- before it looked as though it was hemorrhaging, but now it looks fine. Phew! That was a small weight lifted off our shoulders.
We also discussed where we'd be delivering Jillian. When all this heart stuff came up we knew we'd be delivering in Denver and were given either University Hospital or Presbyterian St. Luke's Hospital as options. JR and I thought University Hospital would be good because it is literally next door to Children's Hospital where Jillian's surgery would be- 1/2 a mile away. She would be taken to Children's an hour or two after she is born, assessed and stabilized for a few days (hopefully) and then go in for her first surgery. But, after talking with the doctor we've been seeing for all of our ultrasounds we've decided to go with PSL. Delivering there means we'll have the same doctor (the one doing the ultrasounds) instead of having to drag a 4th, new doctor into the mix. It means I can keep my OB appointments with my doctor I've been seeing at home until the last few weeks when everything will just be transferred to "Dr. Ultrasound". And most importantly it means Jillian will be able to stay in the same hospital until I'm ready to be discharged. PSL has a cardiac unit that is able to care for this little babies until mom's are ready to leave the hospital so there isn't that gaping separation I had been dreading. She'll be on a different floor, in a whole different part of the hospital, but at least I will be able to visit her, instead of just hoping to get a room with a view of Children's hospital. Phew! again! Another small weight lifted off our shoulders.
So we left our ultrasound feeling more cautiously optimistic than we have for a while. The thing though, about being "cautiously optimistic" is that it requires some kind of caution to be put in place so that you're not just "optimistic". Apparently I had thrown all caution out the window, though, because I really was feeling optimistic. And how nice it was to feel like we had some semblance of a plan going. We had some idea of how this was going to play out, more or less. And we were comfortable (well as comfortable as we could be given the situation) with that plan. 
Then yesterday happened. All day I had these horrible abdominal pains. First I thought I just needed to eat something... nope. That just made it worse. I tried to just drink water... nope. That seemed to make it worse too. Finally JR came home from work- I just couldn't handle the pain and trying to take care of Oli and Athan. They didn't understand I wasn't feeling well, and they shouldn't have to at their age. And the more stressed I felt, the worse the pain was. So JR came home and I laid down and slept for a couple of hours. Surely that would help, right? Right? No. I woke up and the pain was worse than ever before, so off to the ER we went.
They monitored Jillian's heart and put the contraction monitor on me just in case. Well, it turns out I was having contractions- at 27 weeks- and every now and then when I had one Jilly's heart rate dipped, showing some sort of distress. Fantastic! Just what we need... This baby can not come out for at least another 10 weeks... at least. How am I not supposed to worry and stress about this?
A few hours, some blood tests and an IV later, things settled down enough for us to go home under the condition that I take it easy and rest for the next few days. I'm not sure how that's going to work out exactly, but I suspect it will involve the boys destroying my house on a daily basis while I just watch from the couch. 

Tuesday, September 21, 2010

"I Pray for Tea Parties"

From the moment JR found out he was going to be a Daddy, he dreamed of having a boy to teach about super heroes and sports and all things "boy". Luckily for him, Oli was a boy... and Athan too! When we found out we were having a girl this time, we started walking up and down the aisles of "girl toys" when we went to the store, instead of looking only at "boy toys" and then quickly scurrying away from the girl aisles, like we used to do. "What," he asked me one day, "do you do with girl toys?" I laughed at the look of apprehension and confusion on his face. "It's really not much different than boy toys, except girl toys don't fight. They play and dance and have tea parties." "Tea parties?" he asked, as if this was the craziest idea ever. "Yes, babe, tea parties." 

Ever since we found out about Jillian's heart defect, and especially since the "official" diagnosis, I've had trouble sleeping. I'll wake up in the middle of the night and usually won't fall back to sleep for a good 2-4 hours. I spend that time thinking over the millions of things I feel like I need to get done, the "what if's?" and the "why's?". I try and try and TRY to go back to sleep, but, for some reason sleep continues to elude me.
A couple nights ago, I woke up just before 2 am. About 10 minutes later, Athan woke up crying. He couldn't find his Robin (Batman and Robin, Robin). Yeah, our little guy takes inventory in the middle of the night, and if something's missing? End. Of. The. World. So, as is the way it is, JR got up to help Athan find Robin and go back to sleep- if I try to rescue him in the middle of the night, Athan just screams more. He is a Daddy's boy. Once Robin was found and the inevitable end of the world crisis was (once again!) averted, JR came back to bed. I was wide awake, reading a book. Because really? What else am I going to do at 2 in the morning? 
JR came and sat by me and I looked at him and realized, I haven't really looked at him in what felt like a long time. I realized that I've been so involved in my own exhaustion and my own feelings that I haven't taken the time to really spend time with him or talk to him or just see him. He looked tired and worried. I could tell that he, too, was exhausted and just worn out. And it seemed like maybe something was bothering him. I asked him if he was okay. "Yeah..." he said, but he's never really been a very good liar. I prodded him some more and finally he told me he was scared and worried and confused. He wanted to hope that this was all just a mistake, but knew he needed to be realistic. He wanted to believe that, in the end, everything would work out like it should. Everything would be okay. He said he didn't like admitting the possibility that this could turn out so much worse than we're hoping for- admitting this, he said, made him feel like he was giving up on Jillian. And so we talked- at 2 in the morning- about our worries and fears and our frustrations. It felt good to talk and not be interrupted.
JR told me it just wasn't fair. Not so much that it wasn't fair for him or for me or for Oli or Athan, but that it wasn't fair for Jillian. "She's a baby," he said. "She's so innocent. Just like when Athan was born, she hasn't even had a chance to do anything wrong." And then he said,  "I just want my little girl. I want her to be happy and healthy. I want to hold her and cuddle her and I want her to know her Daddy. I just want the little things for her. Every night before I go to bed I pray for tea parties." 
I can't wait for the day that JR's prayers are answered- when he sits awkwardly with Jilly and has a tea party with her. I can't wait for the day when we look back at this time and say to ourselves, "It was all worth it. All the worries and fears and prayers and sleepless nights. They were worth it."

Friday, September 17, 2010

Jilly's Broken Heart

The other day, the boys and I were driving in the car and out of nowhere Oli said, "Mommy, my heart is getting bigger!"
 "Cool buddy, it's good to have a big heart," I said. 
"Mommy, is Athan's heart getting bigger too?" Oli asked. 
"Yep, Athan's heart is getting bigger too."
"Mommy, is Jilly's heart getting bigger?"
Hmm... here I paused for a minute, not sure exactly what to say. "Well..." I started. "Well, right now Jilly's heart is broken."

"Her's heart is broken in your tummy, Mommy?" (And yes, he said, 'her's heart'.)
"Yep, honey, Jilly's heart is broken in my tummy, but when she comes out, we're going to fix it."
"Are we gonna fix it with tape?" 

"If only it were that simple," I wanted to say. But, I said, "No, we're going to take her to a doctor and they're going to fix her heart. You know, Athan's heart was broken when he was born too, but the doctors fixed it for us." 
And at this, Athan with his tiny voice said, "Awww... why's Jilly's heart broken?" 
Again I paused. "Umm... I'm not really sure buddy. I wish I knew. But, the important thing is that we're going to fix it."
And at that they both seemed satisfied, but it made me start thinking, exactly what should we tell them? What are we going to tell them when she's in the hospital after she's born and then again a few months down the road?

They're so young- so "little". But, I think they understand more than I give them credit for. I know they don't really understand. The heart is really this foreign thing to them. They can recognize a "heart" shape, but they don't know what their "hearts" really are. So, I'm trying to keep it as simple as I can for them. I know that's what they need, and really, keeping it simple makes it easier for me, too. Sometimes looking at this situation from the view point of a two and three year old makes this almost bearable. 

Tuesday, September 14, 2010

Athan Gives Us Hope- Part Two

After JR's parents and Vicki left, JR and I spent some time with Athan. We didn't know when we'd be able to hold him. We didn't know when he'd be able to eat. We didn't know when we'd be able to take him home and our family would be whole, like it was supposed to be. Around 7 pm we went to our "sleep room" which was literally a room that someone could do nothing but sleep in. It had a tiny couch with a pull-out bed in it, that when pulled out left maybe 6 or 8 inches between the "bed" and the wall. There were two little bedside tables next to the couch that again, left hardly any room between them and the walls. It was tiny and it was cramped, but it meant we were only one floor away from Athan. We could go see him anytime without having to feel guilty about leaving the hospital altogether. And, it did have a bathroom with a shower. Actually the bathroom may have been bigger than the room, but it didn't matter. We were close to our little man. 
We decided it'd be a good idea to take a little nap- try to get at least a little bit of sleep- and then return to Athan's room. We set our alarm for an hour later, but the next thing we knew it was after midnight... we were so exhausted!
So, we made our way to Athan's room in the wee hours of the morning. He'd been out of surgery for probably 8-10 hours. We thought seeing him right after surgery was hard, but seeing him only a few hours later was even harder. He'd started to retain fluid all over his body- he was so incredibly swollen. And his little feet, now swollen and puffy, were dark blue- almost black because he still wasn't getting all the oxygen he needed. He was still sedated, so he just laid there, his little chest still rising and falling in time with the ventilator. I'm pretty sure we just sat there for a couple of hours crying. It hurt so bad to see our little man like that. 
The next day the sedation medication had worn off some. He would cry, but it was a silent cry because some of the tubes that were inserted through his throat went through his vocal cords. It was so hard to watch him lying there, knowing he was crying but having no sound come out. We longed to hear his newborn cry. After he was removed from the ventilator his cry was raspy and harsh. His little vocal cords were so irritated that the sound came out barky almost- it's a sound that's hard to describe and one that we're not looking forward to hearing with little Jillian. 
By Friday afternoon (surgery was on Wednesday) Athan was ready to be moved from the CICU (Cardiac Intensive Care Unit) to the NICU. By this time we had Oli in Aurora with us and we were staying at the Ronald McDonald House. Let me say, that place is AMAZING! They do anything and everything they can to make the stay for families of kids in the hospital as easy as possible. Obviously it's hard and it's something I'd wish upon no one, but having a place our whole family could stay and 5 minutes from the hospital was a huge comfort for us. Plus, Oli loved their HUGE playroom and playground ;)
Okay, back on track... Friday afternoon Athan was moved to the NICU- this was a big moved to make, especially 2 days after surgery, but he thrived. He was moved from the little "plastic bin" bed, to an actual crib. He was still on oxygen, but his drainage tube had been removed. The swelling had gone down and his color was looking much, much better. Even his cry was becoming more of a normal, newborn cry. 
We spent the weekend taking shifts- one of us going to see Athan and one of us staying with Oli. We'd take turns taking naps with Oli and made sure we at least had dinner all together as a family. Oli was allowed to visit Athan, but he wasn't quite sure what to think... I think he expected him to play and run with him right away, not just lie in a bed.  
Monday morning we were told Athan might be able to go home by Tuesday- just six days after surgery. Our little man was a fighter. But, by Monday afternoon, they surprised us and said we could take him home in just a few short hours! He was still on oxygen but about an hour and a half before we left, they took him off of it and watched his oxygen saturation's. They decided it wouldn't be necessary for him to go home with oxygen, which was a huge relief for us. Finally at 3 or 4 that afternoon, we packed our whole family up and headed home. At just over 5 and a half pounds, Athan looked so, SO tiny in his car seat. Oli spent the first part of the car ride trying to talk and play with Athan, but when he didn't answer Oli got bored and decided to sleep instead.
When we finally got home, we put Athan on the floor so Oli could see him. And as a welcome home gift to his little brother, Oli... kicked Athan in the head. True story... you can't win them all, I guess. 
So, you may be asking yourself, "What is the point of this looong story?" Well, I couldn't just say, "Athan had surgery. It was hard to see him that way. We were there 5 days post surgery and we went home. He's doing good. The End." How boring would that be? 
No, really the point is this: I look at Athan now and no one would ever know he'd had such a rough start. He's a little smaller than many kids his age, but believe me, he makes a BIG presence for himself, where ever he is. He's fearless (which scares the heck out of me!), he's ornery. He fights with his brother. He thinks he's tough and has the most amazing sense of humor- even for only being 2 years old. He loves Oli and to see the bond they're starting to have is amazing. Together they have the craziest, most vivid imaginations. When I look at him and I think of Jilly, I can't help but be hopeful for her. I know their defects are very, very different. I know she faces several, complicated surgeries where Athan only had one, "minor" surgery, but still I feel hopeful. 
I like to think that 6 months or so from now our whole family will be home together. I know that having a (then) 4 year old a 2 1/2 year old and a newborn freshly released from surgery that life will be nothing short of crazy. I mean, really, it's already crazy with just the two of them! But, I can't wait. I can't wait to see how the three of them bond. I can't wait to see how they interact and how they love eachother. After all of this, a few years down the road, I may even welcome a fight between the three of them (although, it will be quickly broken up... because really, picking on a little sister? is just not cool! hahaha, only joking, my big brothers!) 
I don't think, however, that we will put her on the floor first thing when we get home... I don't think she'd appreciate being kicked in the head after all she will have already gone through... 
Throughout all of this, I'm so thankful for my little boys. They are our inspiration and they give us hope. They are amazing little boys and we're so lucky to have them :)


Monday, September 13, 2010

Athan Gives Us Hope- Part One

Athan was born just 3 months (3 months and 4 days, to be exact) after Oli's first birthday, on a Friday evening. I couldn't believe he weighed exactly what Oli did (6 pounds, 6 ounces). I cried and cried after he was born. I was so happy for our family and so happy that Oli was a big brother. He was such a quiet baby- he didn't cry at all the first night we were in the hospital. It sounded more like he "purred" than cried. Our nurses explained to us that his breathing was a little bit faster than normal, and for us that explained the "purring". But, once this continued through the next day, and into the next evening we began to worry... something just didn't seem... right. 
I remember sitting alone in the hospital bed with Athan. We had just had a TON of visitors, all of which had just left, including Oli and JR. Athan was breathing so fast and I remember crying and pleading with him to "please calm down... please calm down Athan." I felt so alone and for the first time was really, truly scared for him. A short time later, our nurse came in and took him to the nursery, saying he needed oxygen and that the pediatricians wanted to run some tests on him. This scared us, but right away we were insured that everything was fine- some babies just have a hard time breathing at first. 
For two more days Athan stayed in the hospitals nursery on oxygen. Monday we were told that we could more than likely take him home the next morning. With the idea that our whole family would be home together in just a few more hours, JR and I took Oli and spent a little time with just him away from the hospital. JR dropped me back off at the hospital and took Oli to the park. Everything felt like it was falling into place... 
Then I returned to the maternity floor and our world was turned upside down. Our pediatrician, Dr. Bruce, was waiting for us. He said he had heard back from Children's Hospital who had looked over the tests that were run on Athan's heart and that he (Athan) needed to be transported to Children's Hospital right away. The flight for life ambulance was already on its way. I frantically called JR and told him he needed to come back to the hospital right away.
JR took Oli to a friends house and came back at the hospital as soon as he could. They let him hold Athan until flight for life arrived. JR sobbed like I never imagined he could- he was so scared and worried for Athan, and he loved his second son SO much. 
Flight for life arrived and put Athan in one of those oxygen box looking things (clearly I don't know what they are actually called) and strapped it to a gurney. He had tubes and wiring everywhere and on top of the gurney he looked so tiny. Well, he was so tiny...
I rode in the ambulance the 60 some miles to Children's Hospital in Aurora, while JR reluctantly stayed home with Oli.  I felt like my whole world was cloudy- having just given birth a few days before, I was on some pretty strong pain killers, and just couldn't seem to think straight. I understood what the doctors were saying to me and I comprehended it just fine, but I could not for the life of me relay this information to anyone else. And it was frustrating. 
I spent the first night on the makeshift couch/bed in Athan's room and doubt I even got an hour of sleep. He was hooked up to what seemed like a million machines- alarms seemed to go off every few minutes, his nurse seemed to poke and prod him even more often. One of the Cardiology "Fellows" (to this day, I don't know why they call themselves that...) came in to do and echo on his heart at about 1 in the morning, when he finally confirmed that Athan did, in fact have a Coarctation of the Aorta. I was told he would be having surgery as soon as he was strong enough to. 
Early Tuesday morning JR came down to Children's. We had a few visitors throughout the day and later were told he would be having surgery the next day- at only five days old. I missed Oli so, SO much and so it was decided that I would go home to Loveland for the night with Oli and JR would stay at Children's with Athan. 
I spent that night cuddling and crying with Oli. This was not at all the way we'd pictured this all going. And early the next morning, I took Oli to my friends mom's house where he would spend the day before spending the night with my friend Tammy. I can't begin to explain the guilt I felt, having hardly seen him in the last 5 days. 
I think Athan's surgery was supposed to be at 10 am (although, I can't be sure, as I was so exhausted I could still hardly think straight!). I arrived at Children's at about 9:30 and we were told his surgery was being delayed for a few hours. Ugh! That meant a few more agonizing hours for us to wait and be done with this. JR's parents and my sister-in-law Vicki had come to spend the day with us. We went in shifts to visit Athan- so tiny and little laying with nothing but a diaper on in the little plastic "bin" (again not really what it's called, but as far as I'm concerned, that's what it was), a million wires and tubes and IV's and every other not good thing there could possibly be hooked to him. While he was in surgery, we went to the hospitals cafeteria for some lunch where we all just sat and hoped for the best. 
Then only an hour and a half or so after he'd gone to the operating room, we were told he was done and doing well and we could go see him. We were amazed that it had gone so fast! JR and I went back to his room. We felt so helpless seeing him just laying there on a ventilator, his little chest rising and falling in time with the machine that was doing his breathing for him. He had a draining tube in his belly just under his left ribs and oxygen tubes taped to his little cheeks. At first we didn't see where the incision was- we expected it to be down the middle of his chest like any heart surgery we'd known- but it was actually along his left side- basically from just left of his spine, around the left side of his little body. This was the hardest thing we'd ever had to see. Our son, only five days old, being asked to fight so hard already. It broke our hearts. 

***I've decided to do this post in two parts- It'd just be WAY too long to do all in one... So part two will be posted tomorrow.***

Sunday, September 12, 2010

Oli Is Our Inspiration

I remember right after Oli was born, thinking to myself, "how can I possibly love something in such a little package so much?" I couldn't believe this little guy was my responsibility. I couldn't believe that JR and I created him and that he was all ours. 
As it is for all new parents, the first few weeks were full of ups and downs. For a while he thought the best time to be awake was between midnight and 4 am. We couldn't understand why he would just eat and eat and eat... and then spit up half of that half an hour later. He pee'd all over the place, as baby boys tend to do and sometimes he made us question if we were really cut out for this "parenting" thing after all. Mostly, though, he just made us happy. 
About 4 months after we set out on our parenting road, I told JR one day, "I think we should have another one!" I'm pretty sure he thought I was crazy. But, Oli had warmed my heart so much. He made me happier than I had ever felt. And he had given me a purpose in this life. I wanted him to have a little brother or sister to share this world with.

When Oli was 7 months old we found out we were expecting his little brother or sister! We were ecstatic! Right away we started thinking what it'd be like if this baby was a boy... what if it was a girl? How was Oli going to react to being a big brother? How was this going to change our family and our lives? A couple of months before Oli turned 1 we found out Baby Janik #2 was another boy! We prepared for his first birthday, knowing in a few months, he'd have a little brother.
We decided that Oli's first year should be all about him. Most of our family and friends didn't find out we were expecting a second little one until Oli's first birthday, when I was already 6 months along. And what a surprise it was for them :)
I think everyone was happy to know there was another little one on the way, although, they were in shock, I think. They couldn't believe we were able to keep a secret like this for SO LONG! It was hard not to tell- we wanted the world to know we were having another baby, and more importantly that Oli was going to be a big brother. And we knew he would be an amazing big brother. But it was important to us that he had time to us for himself. That he'd get a chance to be the only child, if only for a little while. We just wanted him to feel how loved he was, because he filled our hearts with love... 
At just 4 months old, Oli became the inspiration for the family we wanted to be. And now, 3 1/2 years later, we know we made the right choice. He is an amazing big brother to Athan. He has such a big heart and so much love for his little brother AND his little sister. He hates when Athan is sick. He already sticks up for him around other kids and he just loves him.
Every morning he kisses my tummy and says, "Good morning baby! I love you!" and throughout the day he will say, "Hi!" to our little Jilly Bean. 
He is an amazing little boy. And while it scares me to think of how all of the issues with Jillian and this pregnancy might affect him, I can only be proud of the little guy he already is. I think there's a reason he was our first. I think there's a reason God gave him a perfect heart. He's here to love his siblings, and to teach JR and me a thing or two, too. He's here to show us that sometimes the biggest inspiration comes in the littlest packages.

Wednesday, September 8, 2010

Bitter Sweet Ups and Downs

I had an appointment with my OB today- and at that let me pause for  a millisecond to say that we have truly been blessed with the absolute most amazing doctors we could ever wish for. Dr. Saenz and I formed a game plan of sorts, pre-game, if you will.  I'm so glad we had some of our questions answered, but with those answers come new questions and new emotions. 
We decided it would be best for us to deliver Jillian at University Hospital in Aurora, as it is literally about a block away from Children's Hospital. Instead of meeting with Dr. Saenz monthly, like a normal patient would (haha), I will alternate between her and an OB at University every four weeks until about 32 weeks. From 34 weeks (around November 20th) on I will probably need to be on bedrest, in order to keep Jillian in as long as possible, to give her the best chance at surviving surgery #1. 
I'm honestly not looking forward to bedrest, although by then I suppose it may be welcome. It's so sad to think that my interaction with Oli and Athan will be severely limited. I mean, how much fun are they going to have hanging out with me while I lay around for 5 or 6 weeks? But if it will help her, then I will do what I have to do. I just hope that someday they (Oli and Athan) will understand what is going on. I know they  can already feel the stress and the worry around them and I hate to think that it's only going to get worse, at times, from here. For now though, I'm trying to cherish everyday that I'm able to be home with them, take them to the park, or for walks. I'd be lying if I said they were perfectly behaved little boys, who never frustrated me, made me cry or made me want to pull my hair out, but I can honestly say I have a new appreciation for them. Even with all that's going on, I still feel lucky. 
We're hoping we can make it to at least 39 weeks before delivering. Dr. Saenz is guessing that University will want to schedule an induction for somewhere around December 18th. I'm a little sad that we will most likely not be able to have the spontaneous labor and birth that I was hoping for, but again if it's what's best for her, we'll do it. This means that Christmas will be coming early for my little boys. Probably December 4th, I think. Thank God their still little enough to not understand all of this. I can only hope that in the grand scheme of things this will only be a minor disruption for them.
As we're going through all of this, I'm a little surprised at all the ups and downs I've been feeling. We haven't even gotten to the hard part yet and I feel like I've already ridden an emotional roller coaster that could sustain the rest of my life. At the most unexpected times I will feel things that are completely unexpected. Today while I was waiting to see my doctor, a lady came in who is probably ready to deliver any day now. She was happy and smiley with her husband and who I'm guessing was her parents with her. I was surprised that I actually felt a little bit resentful toward her... I was literally thinking to myself, "must be nice to have a normal, healthy baby and not have to worry, or question anything. What a rough life she must have." I almost immediately thought to myself, "Whoa! What was that all about?" Usually I'm so excited for other people, even those I don't know, that it really surprised me to be feeling that way. I guess if I can pull myself back out of those negative feelings, hopefully we will be alright.
I'm trying to stay strong through all of this for JR, Oli and Athan. But the truth is, it's harder than I'm letting on. During the day when I have my boys to take my mind off of everything I do okay. But, in the middle of the night when I wake up and all is quiet (except for our neighbors...) all I can think of is the questions, the doubts and the fears. It's a rough road we're on, but we're really trying to believe that this is all happening for a reason. This is meant to be, even though to us it doesn't make sense.

Tuesday, September 7, 2010

I Doubt We'll Ever Understand Why, But At Least We Can Try To Understand IT

I've spent a fair amount of time over the last few days, while Oli and Athan have been napping or in the middle of the night when I can't sleep, pouring over the internet trying to find anything and everything I can about Hypoplastic Left Heart Syndrome.  My hope is that if we can at least understand what IT is, then maybe we can deal with all of this a little better.
I think we're in a position in which we'd easily like to ask, "Why?" Why, does our little girl have to have this defect, when it only occurs in roughly 9 out of every 10,000 live births? Why our family? Why wasn't one "heart child" enough? The simplest answer, of course, is genetics. Something in our genes, either JR's or mine, that caused something in Athan and Jillian's hearts to "zig instead of zag" as JR likes to say.
But, the fact remains, that no matter how many times we ask "why?" we will never get an answer. Not one that really makes sense. I've heard that some questions are better left unanswered, but this just proves that some questions just don't have answers.  
In my search for all things HLHS, I found some pretty helpful websites. One is and has stories of all kinds of "heart kids". There's stories of kids who have survived and thrived with HLHS-some of them even 20 or more years old (sad thought, I know, that 20 or 30 years old is a "long life span" for these kids, but at least they have been given a chance). There's stories of kids who did well at first, then died later. And there's stories of kids who never really had a chance. There's even stories of kids with Athan's condition  (Coarctation of the Aorta- COA). 
I've looked at the American Heart Association website. The Mayo Clinic website and just about every other one I can find. I've read up on all three of the surgeries, and have seen pictures of actual, teeny, tiny hearts comparing a healthy one to a HLHS one. I've seen countless pictures of little ones with noticeable scars running down their chests. It sucks to think that Jillian will be one of these kids, but I'd rather her have a scar than not give her a chance at all. After all, just over 2 years later, we rarely even notice Athan's scar anymore. 
I guess my hope is that by learning as much as possible, we can prepare ourselves, if only a little.

Sunday, September 5, 2010

The World Doesn't Stop Just Because We're Going Through This

We've tried to do our best over the last couple of days to let all of what's going on sink in, but the truth is, just because this is happening to us, the world doesn't stop. We still have to work. We still have to pay bills and clean the house. We still have to function in everyday life, when really, I'd like to just sleep for a few days straight. We still have to do all the little things that we wish would just go away for a while so that we could think, plan, or "figure things out". It's times like this that I wish time itself would just stand still, if only for a little while. 

Perhaps the most important parts of our lives that we have to remember this fact is with Oli and Athan. We're going through this with Jillian, but they just want to be little boys. And that is exactly what they should be. We have to remember to play super heroes and get dirty. To ride bikes and watch movies with them. We have to remember that they can feel our stress. We have to remember that they are only 2 and 3 and that they don't understand. 

Our minds have been so consumed with "what's going to happen?" and "what if...?" and "how are we going to do this?" and a million other questions over the last 5 days, that life for them can't possibly have been "normal". No wonder they're so crabby. No wonder they're acting out. No wonder Athan thinks he needs to sleep in our bed most nights. 

I sit here right now, watching JR playing with our little boys and just now I'm realizing, this won't last forever. They won't always want to play with us. The time will come soon enough that they will want to spend more time with their friends than with us. We won't give up on Jillian, and we can't let this make us lose sight of them.

We've asked ourselves countless times over the last few days why this is happening to us? I don't think we'll ever understand completely, but for now the lesson we're taking away is that we need to slow down. We need to appreciate each and every day. We need to be thankful for what we have. We need to be thankful for Oli and Athan and for each other. 

Friday after our appointment at Children's Hospital JR joked around that Jillian is our little speed bump. We had a little laugh at it then, but I think he's right. She is making us slow down. She is teaching us to be thankful for every minute we have. And when she arrives, we will appreciate every minute we have with her, Oli and Athan that much more, because of this.

Friday, September 3, 2010

What A Difference A Month Makes...

A month ago today we were anxiously waiting to find out if Baby Janik #3 was a boy or a girl. With baited breath we eagerly waited for the news. At one point we saw the umbilical cord in a spot that made us guess boy. But a few minutes later the ultrasound tech revealed to us that we were having a baby girl! We were honestly probably in a bit of shock. I'm not sure that either of us said anything, although I did ask her if she was sure... "Yes," she said. "No boy parts there." 

To say the least, we were (and still are),excited to think of Oli and Athan being big brothers to a little sister.  Outfits of pink and purple began to take up space in the closet and we started to think of tea parties and dolls and all things girl. 
Three days ago we returned for another ultrasound. Our previous visit gave no indication that something was wrong. Everything looked good, we were told. So, when our doctor told us this baby, our perfect, beautiful baby girl Jillian, had a problem with her heart, we were taken completely off guard. Every emotion imaginable came pouring out of us. We were scared, angry, resentful, confused. We still had no clue what exactly was wrong. We did some research and found some stuff on the internet, but hoped that we were wrong. 

Today we went to Children's Hospital in Denver and our worst fears, short of her not having a chance to survive, were confirmed. Jillian has been diagnosed with a congenital heart defect called "Hypoplastic Left Heart Syndrome". The simplest explanation is that instead of a normal, healthy heart with four chambers working to turn unoxygineted blood from the body into oxygenated blood (with the help of the lungs) to be used by the body, Jillian's heart only has three chambers. There's no chance for the fourth chamber to just grow. There's no chance to somehow create a fourth chamber. Surgically the only option is to make the best of what there is there, and turn an imperfect, non-functional heart into one which somewhat functions, but not anywhere close to what it should.

We have basically been given three options.

Option One: Surgery. Well, surgeries.  The first surgery would most likely be between 3 and 10 days after birth and recovery could roughly last anywhere from 2-6 weeks.  Surgery two would happen between 4 and 6 months and again recovery could last roughly 2-6 weeks. And the third surgery would be somewhere around age 3. 

Option Two: A heart transplant. 

Option Three: Do nothing and let nature take its course. 

We could never hope for another parents' baby to die so ours could live. And we absolutely WILL NOT give up on Jillian, so, we have decided to do surgery. While this is not guaranteed, we feel like we have to at least give her a chance.

Thursday, September 2, 2010

Hoping for Tomorrow

Tomorrow we will be heading to Children's Hospital in Aurora  for Jillian's Fetal Echocardiogram. We're hoping we will at least get some answers- some idea of what is going on and what exactly we're up against. We don't expect to hear some miracle news that, "oops! nothing's actually wrong!" but we are hoping to walk away with some kind of plan. Something we will be able to manage over the next few months.

Over the last couple of days, it has become clear just how strong of a support system we have. Thank you to everyone who is in our corner, cheering us on, praying, sending hugs, etc. We're so lucky to have you all.

Why "Prayers for Jillian"?

We sit here at 4:30 in the morning trying to put into words how we feel. We're sleepy, confused, scared, angry, drained, hopeful and trying to understand. 

Tuesday afternoon we had what was supposed to be a routine ultrasound for our baby girl, Jillian. Suffice it to say, it did not go as planned. Jillian has a problem with her heart. We're not exactly sure what that problem is, but if it's what the doc thinks it is (and no, we don't have a clue what he "thinks"), we have a daunting road ahead of us. What we were told was that she, "will probably need major surgery or a heart transplant after birth."

Friday we have a more advanced fetal echocardiogram to take a better look at Jillian's heart. Hopefully then we will get more answers.