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. :)