Man am I tired!

It's 9:30 and we just arrived home after a very long day! Mike took Lila to school @ 9 am. I had been up from my 2:30 am pumping session to the 5:30 am one. Not able to sleep and trying to organize and reply to the many hundreds of emails we received in support of Ian's care.

I crashed at about 6 am and next thing I knew I woke up thinking I heard Lila in the living room, looked at the clock and it read 9:25 am! I called out to Mike and he informed me he'd gotten Lila ready for pre-school and taken her by 9 am. I can't believe I slept through that!

We got ready and made it about 10 minutes late to the pre-school picnic party. Lila was so excited to see us both she was beside herself. It was a lovely 45 minute gathering of all the mommy's & daddy's visiting their kids on their turf. Quite amazing to see.

Then it was off to the hospital to see our little guy. When we arrived I was a bit nervous. My nose had been a bit stuffy that morning and the nerve receptors in my throat & nose felt a bit like I was still on mag, a slight burning sensation. I asked Erin (the fabulous nurse on) for a mask just as a precaution and she broke the news to me. If I felt even a bit sick, I needed to stay away. Of course I lost it, which made me even more stuffy. I totally respected what she was saying. I've become such a germ freak since he's been in. And I'd rather her protect my son than my feelings. I've been sick so many times over the past few months that I will just not tolerate it again. I must see my son and I must not compromise his situation by being careless about washing my hands or sharing food with my daughter, etc.

To be honest, I really didn't feel sick. I'd spent time crying on the way there due to a conversation I was having with a friend about an even worse situation she went through 10 years ago. I'm usually a pretty good judge of my body, but of course, since being on Magnesium, and being totally out of touch as to what was me and what was Mag, I've been more than a bit confused in the last month.  Now that I'm off the stuff, I've allowed myself to look it up online. (Probably not the best idea, Mike warned) I've been trying to figure out how long Mag stays in your body because there have been so many times in the past week where I've felt as if I'm still on it. Like this morning. Was this real or was this Mag? I told Erin this is how I felt. We agreed that today I wouldn't touch him nor would I lean over his bed side.

I had set up an appointment that afternoon for my daughter to see her doctor to check out a chronic cough that she's had that's freaking me out again. I'm just never sure if she's sick or it's just her. Mike would give Ian his "Daddy touch therapy" before he left to pick up Lila.

Just before he did that, Erin and Vladana updated us on Ian. His labs had come back with all viruses negative so they took him off the 3 antibiotics he was on. His numbers were also looking better so they brought down the level of the blood pressure med and one other. His oxygen level was best it's been as well. Vladana also showed us the lung xray which is also clearing up a bit more each day. The brain scan again came back showing no progress of the bleeding. Another day of good news! Just baby steps, I needed to remind myself.

I spoke to Vladana about my Mag theory and we realized that Dr. Tabsh should be in his Westwood office today (which was just a building over from where we were)  I went out to call to see if I could see him and figure out what my Mag level was in my blood. Unfortunately, he wasn't in the office today. He was actually headed out of town for the weekend for a conference, if you can believe that, so they told me to call down to the SM office. I did and the machine picked up.

Before I headed back into the room, I realized I was starving and thirsty. I headed down to the cafeteria, rolling myself along in my wheelchair with my feet, quite a hamstring exercise I would come to find out ;-) I got some lunch and about 6 drinks of various immune/electrolyte building strength, which 3 of I downed completely while I ate. Afterwards, I went pass the gift shop to pick up 3 packs of Emergen-C, some water to mix it in and some snacks to keep me from getting hungry. I downed the bottle of water with all 3 packs. I was going to hydrate and see if that helped.

By the time I got back up to the NICU I felt so much better! I even passed Vladana who heading out the door and she said I looked markedly improved since she saw me last. When I got back to Ian's bedside, I asked Erin for a pump and set up to pump next to Ian's bedside and read to him "Little Iki, the Littlest Opihi" a book about a strong little mollusk that overcomes his puny size. It was one my sister had picked up from Hawaii for Lila.

After cleaning up, Erin was trying to move Ian's hand off his oscillator tube coming out of his mouth. In doing so, she ended up with his fingers wrapped around her finger. This was so sweet to watch! She also had her hands holding his feet, which is where I've always been able to hold him. She offered me to replace her in this position. Since I felt so much better, I nervously sanitized my hands about 5 times, stood up and held my face as high away from him as I could while still being able to get my hands in there and tried not to breathe. It was the first time I felt his fingers on my hand. Quite a priceless moment.

After a couple minutes of this, his numbers seemed to rise up a bit. As I told him what I was doing I slowly pulled my hands away. The fellow on came by after Erin was watching him a bit and we all decided we'd leave him be for a minute. His sensitivity level means that any little thing can set him off a bit.

A woman from admissions had come by. I decided it might be a good time for me to let Ian be and get a reality check on how things were going to be covered for him. I stepped away from his bedside to speak to her.

Our conversation led her to go back to her office to get a number for where he was at to date. I was curious, was this place $5k a day or $50k? Turns out his stay here was just over $10K a day, not including meds and doctors. His total to date, including some meds and no doctors was just over $100k. I'm not sure if this included his night in SM or just Westwood. The number was about right where I'd hoped it might be. Although I'd be really curious to find out what the total will be all inclusive.

I spent the remainder of the afternoon between sitting by his bed and talking with him, and going out of the room to take phone calls from various people I needed to speak to. It was the longest time I've been with him since he was born. While I was exhausted by the time Mike came to pick me up, it was a great day.

Lila had mentioned wanting to have a play date with our dear friend Renee. Luckily, Renee was not working this week because her daughter was home from college. She was very excited to have her for a few hours. Another friend, John, had planned on bringing dinner down to us that evening. We coordinated an evening out to dinner in Westwood with him instead. Renee lived just over the hill from UCLA so we could get Lila when we were done. By the time we finished dinner, I was just about to fall off my chair.

We headed over to Renee's and found ourselves in the middle of a "dance party" with Madonna playing, the lights dimmed and everyone wearing brightly colored boas and twirly skirts. Of course, Lila has the sparkly tiara on as well. How lovely to know that they were all having such a good time! We had to join in the fun for a couple of songs. I got up the energy to at least shuffle my legs around a bit. Scary part was Lila was the DJ and she knew just which track Material Girl was! Where did this girl come from??

We headed home and had a melt down on the way. Turns out we had forgotten the tiara that Renee said Lila could bring home. We called Renee and she assured Lila it would be waiting for her in the same spot she had picked it up from that night.

By the time Mike got Lila in her jammies and he was finishing up with his make-believe stories it was about 9:50 and it was my turn for songs and scratches. This was way too late for an almost 3 y.o. to be up but it seems it was becoming more of the norm these days. We really needed to work on that. Of course, just as it had been every night since I've been home and sounds like many nights when I was in the hospital, Lila started screaming for us when I finally walked out her door. Bed time was the worst time for her. I think it's just because she's the most vulnerable when she's tired (aren't we all) and it seems she just doesn't want to let go of us. Maybe she's afraid we won't be there when she gets up. It's also probably somewhat normal behavior of a child her age. Most likely escalated by the last month of change and the fact that we are just getting her to bed too late. But actually, it happens whatever the time. We just have to throw the rule book out on this one, which is hard for me to do, and take extra care with her right now. But when she starts crying, it's really hard for me to hold it together. By this point in the day, it's all I can do to just get my stuff done and make it into bed without loosing it myself.

Ok... this is how tired I was tonight. If you're a guy or your old school and not really into discussing private things such as this (which I'm usually not but it just so goes to prove a point), you might not want to read this part... TMI ;-) If you're a woman who has nursed a child, you will relate.

Often times I'm writing this blog while pumping. Anything to keep my mind off of being "milked" is a good thing. Tonight, while getting up after my 15 minutes, I notice that my shirt bottom and the leg of my jeans are wet. In my haste to cover my "contraptions" with my most beautiful nursing cover (by Bebe au Lait) as my little Lila raced down the hall to ask me if I'd sing her songs before bed, I neglected to put the bottle on one side. My precious droplets of milk were then allowed to just fall where they may! It's bad enough that I'm barely getting an ounce out at each sitting, but then to loose half of it on my jeans... quite frustrating.