Thursday, May 19th

We are almost one week in. 

Trying to wrap my head and heart around it all, and it's very difficult to describe. 

Sort of a mixture of relief, fatigue, anxiety, fear, hope, gratitude, and overwhelming trepidation.

Kathryn is doing so very well considering the battle she has to fight.  She weighed 9lbs 4oz at birth, and by Tuesday night, weighed 15lbs 4oz.  That's how much fluid she has retained due to what's called 'third spacing.'  Basically, when fluids enter your body, they remain in the vascular system and do what they are supposed to do (ie: get routed through the proper vessels and organs to ultimately clear the body in the appropriate way).  In Kathryn's case, for some unknown reason, she started third spacing, which meant fluid that entered her body leaked through her vascular system into what's defined as a "third space."  This is why she is so very swollen.

In addition to that, for all the fluid that her body leaks, doctors have to replace that fluid to keep her organs in check.  This is my unscientific explanation of why she has so much edema. 

A fear a few days back was that Kathryn wasn't peeing like she should.  We were really concerned there was a kidney problem.  However, they discovered that Kathryn was in fact producing urine, but her bladder wasn't peeing it out, they think because her body was so relaxed from all the drugs she was on.  They inserted a catheter, and voila!  PEE EVERYWHERE!  They removed the catheter Tuesday night, and now she is peeing like a race horse :-) 

We REALLY need for her to keep peeing because it's the best way for her body to rid itself of all the excess fluids. 

So here's a synopsis of where we stand now:

• Doctors have already told me they really doubt we'll ever be able to know what caused the hydrops.  There are still a few tests outstanding (viral cultures, etc.), but they really just think it's going to be an idiopathic hydrops case (ie: we won't ever know what caused it).  This is actually more of a positive.  It increases her chances that the hydrops will resolve itself on its own. 
• Kathryn has lost 2 ounces since her weigh-in Tuesday night versus last night.  They were very pleased with this amount and we need to keep praying for her continued weight loss.
• Kathryn still suffers from Pulmonary Hypertension (high blood pressure of the lungs), but that's pretty standard for hydrops babies, as well as babies born with underdeveloped lungs.  She is on nitric oxide to help combat this problem.  We know that she may have respiratory issues long-term, but this is still up in the air.
• Kathryn is down to one chest tube.  The other side of her chest was left open (covered with gauze) and sort of drains out on its own. But there wasn't enough fluid on the left side to merit a chest tube anymore.  The right chest tube is still in place, and her effusions are still draining.  This will hopefully resolve itself as the hydrops and edema resolve itself.
• Doctors noted a condition yesterday called DIC.  It stands for Disseminated Intravascular Coagulation.  However, they made this note yesterday based on lab result numbers.  Today, based on the lab results, our attending physician said the DIC had resolved itself.  I'm sure they'll watch this, but for now, we are good to go and there's no cause for immediate concern.
• Her liver values are normal, her kidney function is good, her heart function continues to be good, and today Dr. Bhat said her heart function was actually better than the day before.
• Kathryn has been on a Fentanyl (sedative, narcotic) drip from the beginning, but they have cut that down a bit because they really want her to start moving.  This makes momma sad, but I've gotten used to it.  When I got here last night, Kathryn was moving her arms, legs, feet, hands, and it made me worried that she was in pain and uncomfortable.  I know they have to have her start moving, because that's the best way to work the fluid out of her skin, but I had a breakdown by her bed.  The sweet nurse (Nurse Kathryn if you can believe it) told me that she would give her a little more sedative while I was there last night because it wasn't worth if if it was gonna make Momma upset.  That's a good nurse. 

We have been surrounded by the most amazing medical team here from the doctors, the nurses, and the respiratory therapists.  They have blown my mind how much they care for Kathryn just like she's their own.  Janis, our nurse today, gave her a little q-tip bath, and yesterday, Dr. St. John told me she wanted me to start lotioning up Kathryn's legs.  And last night Nurse Kathryn let me cry right there with her. 

If I think about it too much, my heart swells with gratitude.

So...that's a quick update.  There are so many more terms and conditions and symptoms and medicines and ventilator setting explanations I could give right now, but it's just not important. 

What's important is that our girl is a fighter in the utmost sense of the word.  She is so strong that it simply blows my mind.

And while she still continues to be very sick and very critical, these baby steps she's making each day make me more proud each and every day. 

The March of Dimes gave Kathryn her first set of Bravery Beads yesterday to commemorate all the little steps she's taken. 

I think she deserves a trunk full.

I also get overwhelmed when I think of all the people praying for Kathryn, for us, Thomas, and the rest of our family.  People from all over, from every walk of life, every faith, and all over the WORLD.  It warms a girl's heart and makes me get all choked up when you KNOW I don't like to do that in public :-)

I told a close friend of mine yesterday that I feel bad asking for all of these prayers from all of these people when I think I don't give up prayers all day long myself.  It's like suddenly the day is over, and I haven't stopped to think, reflect, or pray AT ALL.  Until suddenly I find myself reflecting in the middle of the night and end up in tears.  Sometimes it's just easier to ask you guys to do it for me.  So I'm very glad that's something I can let go of, especially when I just feel so inadequate about 90% of the time right now.

For now, we're adjusting to our new normal.  All my days at the hospital, a couple hours in the middle of the day with BT at the hospital with me, a couple hours together with me, BT, and Thomas at home, and after Thomas goes to bed, me going back to the hospital till I just can't stay awake anymore, me staying in the family sleep room, and doing it all again in the morning.

It's okay, we're okay, and for crying out loud, it's worth it.