Tuesday, October 11, 2011

Wow! It's been 5 months...

...since I last managed to find time to write a post!

Needless to say, life has been crazy. Or it feels like it, at least.

So, to start where we left off...

Jillian had her second open heart surgery on May 12th and did extremely well! The day before, JR, my mom, Oliver, Athan, myself and of course Jillian all wore Superman shirts while JR and I took Jilly to her pre-op appointments. Really, it couldn't hurt to summon the strength of the man of steel, right? And, I'm pretty sure it worked! We were told when we first found out about her condition, to plan for 4-6 weeks for recovery (if my memory is correct, which really? Who knows?!?!) Her surgery was bright and early on a Thursday and she was released to go home on Tuesday. Yes, only FIVE DAYS of recovery! Thank God for that!! We were told to expect her to have horrible headaches, which would cause her to cry for days or even weeks straight. We were told it would be possible that she would need to be weaned off the pain meds post-op. We were told that pretty much everything we had worked on with her physically, with her physical therapist, would need to be done all over again. We were told she probably would not be able to put her hands above her head or even bring her hands in to the center of her body. There were so many things we were expecting to happen after surgery- all of which would cause some sort of delay, big or small.  Well, none of these things happened! The morning after her surgery, JR and I walked into the Cardiac ICU and heard a baby crying at the top of their lungs. We looked at each other, like, "Oh no! Is that her?" We rushed down the hall to her room to find her contently sitting in her bed, with her arms behind her head and a look on her face that was something like, "Aww... just relaxing...." Her nurse assured us that she was indeed having headaches, but the pain meds were making them tolerable for her and, "oh just wait until she's off the 'good stuff'. Get ready for crying..." I listened intently as the medical staff did their rounds that morning, as I had done with her first OHS, and was surprised when the head doc that morning kinda laughed after a pretty uneventful report from one of the fellows. "So... she's doing fine?" was pretty much his only response, followed by, "Ok then, let's move on," and off they went to the next kiddo. Less than 24 hours after surgery, she was discharged from the CICU and moved to the Cardiac Progressive Care Unit- the step-down unit at Children's, on nothing but Tylenol for pain. Surely, I thought, the headaches will be coming... But they never did. Thankfully, Jillian has nice, wide-open, almost normal Pulmonary Arteries, which allow the blood from the top part of her body to flow with much less pressure than other little one's with her condition. Because of this, we're told, she didn't seem to get the headache's that are common after this surgery. (I won't go into the details of what the surgery entailed as far as changing the structure of her heart, but suffice it to say, her circulatory system is nothing close to normal, thus the pressure issues.)
The days that followed were (thankfully!) pretty uneventful. We spent all of Friday, Saturday and Sunday with Jilly in her room, half waiting for her to start screaming at any second. But still, she seemed to be fine. She found ways to entertain herself- slapping at her nasal cannula until it was just right in her mouth so that she could use it to blow bubbles (hehe the positive of being on oxygen!), shaking a rattle while babbling or bringing her toes to her mouth (another thing we were told she would not be able to do...) Also on Sunday, we were surprised with a visit from my Aunt and Uncle from Minnesota who were in town for my brothers wedding! :):):)
Monday JR went back to work and at that time we were still unsure of when Jilly would be going home. Our nurses were guessing, "maybe by the end of the week... maybe Thursday?" so Monday afternoon when Jillian's surgeon walked in and said he thought she'd be leaving the next day, I was shocked. Her surgeon misinterpreted my shock for disappointment, thinking I thought we were going home that day. "No doc, I'm just shocked..." was my response, I'm pretty sure...
We left the next day by noon (Jilly wearing a Wonder Women t-shirt!), happy to have our baby girl back at home and ready for craziness to follow, in the form of my brothers wedding, moving, Athan's birthday, t-ball for Oliver, weekly PT and OT appointments for Jillian along with... more appointments than I care to think of, JR's and my anniversary, lots of laughs and tears, me taking a condensed CNA class to be Jillian's at home care provider, Oli starting pre-school and bringing with that a round of sickness for us all and Jilly hitting about a million milestones... sitting, crawling, three teeth, saying, "mama" and now pulling up and cruising along the furniture.
Needless to say, I am so proud of my sweet girl! We still have some hurdles- she still is not eating very well by herself so we are continuing her g-tube feeds through the night, she is still on oxygen at night and off and on during the day, depending on how her sats are, the winter is coming so we are trying to prepare the best we can, not entirely sure what that will bring with it and of course there is another surgery, which although it is still looming far off in the distance, seems to keep itself somewhere near the front of my mind. 
I think the easiest way to sum up the last five months is to say that our life continues to be a roller coaster, full of ups and downs, and sometimes it's a confusing place for me to be- on the one hand I almost desperately long for someone else to understand, but on the other hand my biggest wish is for no one else to ever have to understand. Some days I feel like life couldn't be any better- I have an amazing husband, two boys wise beyond their years and a sweet little girl who continues to inspire me everyday- and other days (though those factors still remain positives) I feel like this is all too much to handle, wonder when it will get easier, call up the best friend I could ever ask for to get out for some much needed Mommy time and priceless laughs (Thank you, Tammy!!), go home and kiss my sleeping babies and wake up to do it all again the next day.

Saturday, May 7, 2011

Four Days...

So the countdown has officially begun. Just four days from now our sweet Jilly will be just hours away from her next surgery. I don't think we are really ready for this, but somehow I'm full of hope. Jillian's catheter procedure went extremely well. The doctor who did the procedure said this was the best he has seen a HLHS kids heart, post Norwood (surgery #1) in a "long time". They originally scheduled the procedure to take 3 1/2 hours from start to finish, with some recovery time after, but it took less than 2 when all was said and done. Jilly did end up needing oxygen for a couple of days following the cath, but quickly weaned herself off. We're not sure if this was some sort of side effect of the anaesthesia or if this was because she still could be recovering from the Human Metapneumovirus... either way though, she's off it again now and is doing well :)

Thursday, April 14, 2011

Change of Plans

Jillian was admitted into Children's hospital CPCU (Cardiac Progressive Care Unit) Saturday night after testing positive for Human Metapneumovirus (a nasty respiratory virus, similar to RSV) on Thursday. She seemed to be okay Friday and through Saturday afternoon, then all of the sudden her sats dropped to the low 60's (with her heart condition her oxygen levels should be between 75 and 85). After a quick call to Children's Cardiology her and I left for Children's, at about 8:30 pm, expecting a 24 hour observation period and oxygen therapy for a short time. I had her pulse-ox on her the whole drive to Denver where she was mostly high 60's to low 70's. Then when we got to Children's she dropped to 58. SCARY! My little girl is almost always right at 80 without any oxygen, so to see 60's then 50-something show up on the monitor terrified me! Thank God we left for Children's when we did...
Because they were expecting us, they had someone almost immediately to ready to take Jilly into the ER, but once she saw the pulse-ox she decided to bypass the ER altogether and took her straight upstairs to the CPCU. The nurse put her on their pulse-ox and she dropped back into the high 50's and then all of the sudden down to 48 for a good 30 seconds or so. Ugh! Not a fun moment! Luckily though, they were able to get her saturation's stabilized pretty quickly as soon as the oxygen was started.
With the Human Metapneumovirus comes this really rough, barky, horrible cough. And with that comes a whole bunch of mucus and junk, so sweet Jilly struggled for a few days, trying to cough up the crud and then subsequently choking on it making her de-sat over and over again. Finally Tuesday afternoon she really seemed to turn the corner. She went from being almost lethargic and clearly miserable to playful and smiley and "herself again".
Our 24 hour observation turned into 4 nights and 3 1/2 days in the hospital, with her having to go home on oxygen and in the end the ultimate decision to postpone her catheter procedure and surgery for a couple of weeks.
The new dates are:  May 2nd for the catheter, May 11th for pre-op and May 12th for surgery.
I can't decide if I'm relieved to have a couple more weeks to prepare myself for her surgery or more anxious that it will be that much longer before this phase in her care is over. A bit of both, I suppose...

Wednesday, April 6, 2011

Wow, I Am SO Not Ready For This Again...

So I was wandering around Target tonight, waiting for one of Jilly's prescriptions to be filled and it hit meI AM SO NOT READY TO GO THROUGH THIS AGAIN.

I mean, I know that we've known this was inevitable. That this would be coming up. That Jillian absolutely needs this surgery to live, but for some reason... I don't know. Today it just hit me.

JR and I have been trying to abide by this "it is what it is" kind of  attitude. We try not to question why this is happening to us, our family, and most importantly why her? Why our little girl? Why are we "lucky" enough to have two kids with heart problems?  We try not to ask these questions, because those are questions that will never be answered for us. Not in this life at least...

I try to accept the fact that we've been thrown into this medical world that we'd never have chosen for ourselves and certainly not for Jillian. I try to accept that this is how things are supposed to be, for whatever reason. I try to just roll with the punches- the never ending appointments, medicines everyday, literally pumping formula directly into her little tummy through a tube, keeping our family on lock down so we don't get sick (although this recently was a big FAIL), the constant worry and the guilt, oh the guilt! Because when answers are impossible to find, guilt fills their place. I try to accept this... all of this and more. 

But some days are hard.

Some days I want to scream and cry and hide from the world. Some days I want to look at my daughter and believe that she is just a regular, normal, healthy little girl, at least for a little bit. Some days I wish I could just will her to take more than an ounce at a time from her bottle. Or maybe if I pray hard enough or wish on the right star, her heart will just be healed for good. I hope every. single. day. that medicine will advance fast enough to prolong her life past 20 or 25 or 30 years old.

Some days I have nothing but questions.

Today is one of those days and the only thing I know for sure is this: I'm not ready. I'm not ready to see her struggle after surgery. I'm not ready to see her in pain and not  even be able to pick her up and cuddle her. I'm not ready to see her swollen, with tubes coming out of her chest. I'm not ready to watch my baby fight for her life again. I'm not ready to spend day after day just sitting there feeling like we can't do anything for her, searching for some part of her body that isn't covered in wires or bandages or monitors- somewhere that we can caress her at least a little bit so she at least knows we're there. I'm not ready to have to wait for someone to tell us, however many days after that we can finally hold her again and comfort her as best we can, knowing that we can't take away her pain. I'm not ready to watch the numbers on the monitors go up and down and the alarms go off at all hours. I'm not ready for my family to be pulled apart again. I'm not ready to try to explain to Oli and Athan why mommy and daddy are gone and that Jilly needs "to get her heart fixed," because they can't and shouldn't have to understand. Plain and simple: I am not ready.

What I am ready for, though, is for this to be over. For her to come out on the other side, the fighter that she is. I want so badly for this second heart surgery to be done and over with and out of the way so we can have a couple of years to just be the family we haven't really gotten the chance to be yet, before we have to put her through her third surgery. I want this so bad... so for now, I'll put on my big girl panties and a facade that says, "I'm strong!" I'll hide my tears from my boys and go on with our day to day life...

I'm not ready, so for the next couple of weeks I'm going to try to remember to cherish every single smile I get from her. I'll try to leave the stress out of every day and enjoy every day I have at home with all three of my kids together, no matter how crazy they make me. I'm not ready, but by surgery day I will be. Because once this is over, I know it will all be worth it.

Thursday, March 31, 2011

Next Surgery: April 26th

Life has been so busy, I haven't had five seconds to think, let alone get to putting a "real" post on here. So, for now, this is it... Sweet Jilly's next surgery is scheduled for April 26th with a whoooole bunch of appointments in between. I will do my best to keep everyone updated. And as always, please keep Jillian in your prayers throughout the next few weeks before surgery and during her recovery after. Thank you :)

Saturday, March 12, 2011

Recovering from G-tube Surgery

Jilly's surgery went well : )  Other than needing oxygen overnight because her sats were low (even for her) she has been great! She was taken off of oxygen at about 6 this morning and has been breathing on her own ever since. She's very hungry- she hasn't eaten in over 24 hours- so we're hoping we can start feeding her small amounts soon. She was put in the CICU (Cardiac Intensive Care Unit) last night, as the whole hospital is on bed alert, meaning they are packed! This was pretty much the only place in the hospital to have any open bed spaces. We are waiting to be moved to CPCU (Cardiac Progressive Care Unit) for tonight and then hopefully home tomorrow.

Tuesday, March 8, 2011

G-tube Surgery, Friday March 11th

We've been home for almost 9 weeks now (WOOHOO!), but Jillian is still unable to keep up with the amount of feeding she needs. After multiple trips to our pediatrician, to Children's Hospital and a disastrous trip to our local ER to have her NG (Nasogastric- a thin tube put in her nose, down her throat and into her tummy) feeding tube placed after being pulled out, we've decided to go ahead with the g-tube (gastrostomy- not to be confused with "gastronomy" which, apparently, is the art and science of good eating...) surgery that will allow us to feed her directly into her tummy. With her second heart surgery quickly approaching- much quicker than JR or I would like to think about- we've decided to go this route in hopes that she will gain weight better. As of Friday she was just under 9 pounds. I'm not sure if there is a weight goal that the doctors would like her to be at, but just like the first surgery, the bigger the better! We're encouraged by the fact that she did so well after her first surgery, despite being teeny tiny, but we still feel like we need to do everything we can to give her the best fighting chance possible, and this is the best way to do that.
I have to admit that electing to put her through an unexpected surgery is wearing on me some. Maybe it's just because I've hardly had time to think about this surgery, because life with three kids 4 years old and under? Is CRAZY! Period. What with changing the baby and feeding the baby and giving the baby her medicines and WHY ARE THE BOYS RUNNING AROUND HALF-NAKED AGAIN?!?!?!, there really just are not enough hours in the day to contemplate much of anything...
In the end we're trying to trust and believe that the amazing doctors that she is lucky enough to have, are steering us in the right direction.