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.