Thursday, July 18, 2013

they came

I have more details on daily events on our FB page.  My desire is to update all of that here as well, but I know it's been a struggle for me to do so.  If only I could spend a little more time on the computer, I'd have no problem doing that...but I seem to have time to update one thing reliably and that goes to Facebook because the set up is way easier, faster, and more social.  I'm going to try to get more in the habit of copy/pasting onto our blog from FaceBook, but it might not always happen.

So, if you want the best updating, you can "like" our page.  If you want to get every update, you can click on the "like" button and choose "get notifications".  Then it'll send you a notification on your phone (email too?) when I update.  www.facebook.com/ourlittletasteofheaven


On Sunday Emma was admitted to the hospital to start preparing for transplant.  She was going to start chemo on Monday, but she ran a fever early Monday morning, and so they canceled chemo that day to ensure she wasn't sick.  The plan was to start chemo on Tues unless she tested positive for any illness.  Turns out she tested positive, and so she is not starting chemo until she's better.  They were thinking next week, but our donor can't donate on that schedule.  So, it looks like at least 10 days, but we don't' know for sure. We're still waiting to hear what the donor says.  We'll be staying in isolation at the RMH until then.  

She's sick, but she shows very little signs of it.  She has a mild runny nose, clear, and maybe a little sleepy.  About 95% of the time, she seems completely fine.  Her ANC keeps dropping each day.  It was down to 220 this morning.  Super low!!  Her platelets were down to 11, so they transfused.  Her hemoglobin was 8.2.  It's low, but it's high for her.  Her blood transfusion from a couple weeks ago is still hanging around.

I stayed with Emma during the days, and Ani stayed with her at night.

So, that's the summary of our week thus far!

Yesterday Tyler arrived in Cincinnati.  He took a two day drive to get here.  He brought Rhys (3 yrs) with him.  I knew he was going to arrive around 2pm.  Since I'm awesome, I forgot my phone charger at the RMH, and the hospital drains my phone's battery, so around 1:50, my phone completely died.  I was supposed to meet Tyler at the RMH, but I no longer knew when he'd arrive for sure since 2pm was an estimate. I can't call out on the room phone because it is only a local number.

Anyway, crisis was averted when I got a charger from Child Life.  As soon as I got it charged enough to turn back on, I was able to call Tyler and find out he was just down the street.  I grabbed my bag and got to the RMH as fast as I could and caught him at the gate getting in.

Being that I'm still super awesome, I had forgotten the key to the gate.  I noticed it before I got out of the hospital, so I called and Kyrie ran it out.  She met me at a little side gate, basically threw it at me, and I ran to the car gate to let Tyler in.

Hoping into the car and seeing that Tyler and Rhys really were there was such an overwhelming feeling.  I couldn't believe they were actually there.  We got in and pulled up to the circle to unload, and I jumped out and grabbed Rhys and gave her a good hug.  Then out came more tears, and I couldn't stop holding her tight.  I didn't want to let go of her.



We got in, got Tyler checked in, and he changed...and soon we were off to the hospital to see Emma.  I washed up and walked into her room before Tyler.  She didn't know he was there and couldn't see him through the window.  This is a video of when he opened the door was was suddenly there - surprising her:


Then she gave Rhys a hug for the first time in six weeks.  (Emma is still tender from her three belly incisions and her central line in her chest, so hugging isn't the easiest thing.)



Then she was soon in his lap, not wanting to let go.  



We all cried a lot...several times throughout the night.  Any time I thought about her crying, I started crying.  I took Rhys to the RMH pretty soon after the photos above.  I kept wanting to go back so I could hold Emma.

Oh, and they let Rhys in to see Emma, if you didn't notice!  Since she hadn't started chemo, they allowed it.  So, that was super nice!

We are now back home at the RMH, as of today.  We are mostly unpacked and settled again.  Since Emma didn't start chemo, Tyler is planning to go home sooner so that he can come back and be with Emma for a while later on.  He wants to be with her, but he has very limited time due to work.

It was cute seeing Rhys and Ella see each other for the first time.  Ella seemed quite curious and kind of like, "Hey!  I know you!"  Ella seems so much more baby with Rhys around.

When Ella saw Tyler for the first time, she did a double take and then stared at him.  She didn't seem excited or anything - just stared like she knew who he was but wasn't sure what to think.  He held her and you could tell it felt really good for him to hold her again.  He thought she didn't remember him, but I think she did.

Rhys is messed up with her sleep.  She randomly fell asleep a little after 6pm.  No idea if she'll sleep all night or not, but here's a photo of her snoozing in the pack-n-play:


(I feel like I must add a disclaimer.  My screen is really cool...as in, photos tend to end up with a little cooler color to them than they really have.  So, when I edit a little bit, it's REALLY hard to know what color it'll end up on most screens since my little laptop is not calibrated, and I don't know when that'll happen.  So, if photos look strange, part of the reason is due to that!)

Emma has blood work tomorrow and I'll update then (hopefully!).  If you don't hear from me for a while, check out our facebook page.  Even if you aren't on Facebook, I think you might be able to check it.

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