Tuesday, October 9, 2007

Lilli Update

I've been emailing updates, when I can remember to do so- and as I do I leave people off- I forget who I told what, or when you last heard from me. I have a small army of communicators out there- who are spreading the word but when I forget to update them or don't know when I last spoke, emailed or texted what's the point? (insert silent praise for technology here- as I'm not sure how we would have been able to keep anyone in the loop with out cell phones and the internet) In an effort to streamline communication - a favorite corporate buzz phrase of mine, I'm going to do what I know and provide updates here. Now keep in mind, I'll likely remain cheeky and sarcastic- but not as entertaining as I have ordinarily found myself to be. Lack of focus and sleep will do that to you.

"But how then do you find time to update this silly blog?" I can hear some ask. My answer is four fold.

1) I can't sleep at every moment I don't need to be awake.
2) The hospital has internet- so when I'm not staring at my beautiful little girl as she sleeps- I get antsy. Not much has changed there.
3) I'm lazy. We continue and remain amazed by the overwhelming outpour of love that people have shown us. When something like this happens you really see who is there for you and how much you are cared for. That being said, when people love you and care about you they want to know how things are going and while everyone understands we can't constantly update them- they still want to know. This way everyone can get the update and I can sleep guilt free.
4) It's strangely therapeutic, so get off my back.

The last week and a half has been pretty much a blur. Days weaving into days- it has been 11 days since Lilli arrived, but it seems like months ago! Tomorrow will be 2 weeks that we entered the hospital. The birth story to come- but to provide a little insight as to what the last week has been like…

Last Wednesday (10/3/07) was a tough day, one of the toughest to date- Thursday was a better day, for sure. Friday it got better, and the trend has pretty much kept up since up until most recently.

We had to leave the hospital, last week, and check out of our room, 1374A. Oh lucky 13.. the room on the 13th floor, who knew we'd want to stay anymore time? It was really hard- to get in the car and leave our girl... Chris was amazing but it would sink in for us at different times. She should be home with us. Seeing the empty car seat, her crib- her room - all that is meant for her to continue to be empty. It was difficult, and it still is. Never mind our arms- just wanting to lay with her- hug her- you envision this experience in such a different way. At least we did. How it would be - and like many things with us- it didn't go as planned. But this time, not so much in a funny twist of fate way like it usually does. Before we left for home, we spent the afternoon with Liliana. She gave us the best present other than being ready to come home... she opened her eyes- little victories.

I had not seen her eyes yet, except from a distance in the operating room or in a picture. It was amazing. It was a good visit. We got to touch her- talk with her- they started to decrease the sedatives she is on- to see how she fairs. It was a great visit. Before it was about not disturbing her- so while some nurses would tell us to touch her and talk to her- others made it seem like she shouldn't be bothered- so I was becoming a little afraid of her- to be honest. Well afraid that if I touched her- talked with her it would stimulate her so much that she would shunt. Shunting is when the oxygen coming in and out has levels of different numbers - and is far in value- it basically means that she is taking quick 'panicked' breaths on her own- while the ventilator does its thing. I think- we've learned a lot about numbers, values, heart rates that are good and not- her oxygen rate - the level of oxygen that they hare giving her- what that means what we should be looking for- just while we are sitting there. Although everyone says the numbers don't matter- she does- but when the damn thing blips and beeps away it's good to know the who what why of the operation...Chris has become an expert.

Seeing her and being able to see her- and have her see me and for the nurse to take off her little earmuff to make sure she can hear us- was great. She recognizes our voices- I can tell.

The next day, Thursday (10/4/07), was even better it's the little things- like we were able to take her temperature, feed her and change a diaper! It was a big day for us! She spent time on her belly- which she loved. We got to see a benefit in her being at the hospital as with out all the monitors this would be a gigantic “no no” in infant sleeping positions. In terms of feeding her- Chris pushed milk through her feeding tube- just a very little bit but they started introducing real food- so every little bit is a good start. After I came back from pumping- they put a bit in a medicine cup- gave us qtips- and had us have her have a little "taste" of it- and she loved it. Which is a good sign, because she hasn't had to eat anything through her mouth- so teaching her how to do that- 1-2 weeks after being born is supposed to take the 'most time' of this recovery process.

But the time estimates just drive me crazy- because I’ve been counting down since we found out about Lilli. Sure a lot of it was due to the fact that I was not a big fan of being pregnant, and some of it was for comic relief- but most of it truly was our excitement to get to know our little one. And now to continue to have to wait to bring her home is a little slice of hell. The great news is every time we call the NICU nurses after we leave the hospital or before we arrive we get great reports- and everyday there are small victories- and sometimes big ones.

Friday (10/5/07) was a huge day. She is eating (still through feeding tube- but digesting everything), her ventilator was taken O U T! She is weaned off one of the sedition drugs she was on, now just "one more" to go- it's morphine though so it's going to be tough. BUT she has been brought down 2-3 times by the 8th and we’d seen no withdrawal symptoms. My mom was singing to her- "trying make me go to rehab" that Amy Winesomething song? Yeah, my baby is in rehab. And at such a young age! And while on Friday she wasn’t showing signs of withdrawing yesterday it started. More on that in a bit.

Chris & I got to hold her for the first time. To look in her little face and see her look back into yours- to get to hold and kiss her- it really does make it all worth it. Although well before we were able to do that, it was worth it. Seeing what true love is. It even makes you forget... a bit... the journey to get her there. And would you do it again? It turns out you would. To wait a week to hold your little girl is some serious bullshit, but as days go by and we get closer to coming home it gets distant. And being loved by her- and our family makes it possible to keep pushing.

Little known fact about having a child: you actually fall MORE in love with your baby's daddy. True story- everyday, literally every single day, I find that I love Chris more than I ever have and more than I thought I could. Then I wake up the next day and I find that it all rinse and repeats.

This, like most things, was not found in any book. Stupid f'ing pregnancy books.

She got her first non-family visit- Kathleen was in town and got to see her- in the flesh. She confirmed what we already knew- she is beautiful. I mean Lilli... although Kathleen did look hot to trot for the NICU. (She came on her way to go out to dinner and out after on Friday- she would have landed a doc for sure- had there been any around).

Saturday, we got the green light. We can hold her ANYTIME we want. We can walk right in there and pick her up- wires and all. She's finally starting to feel like OUR baby, not the dang nurses. Chris changes diapers like a champ. Seriously. And she changes her look everyday> NOW that we can see her mouth it's even better.

Everyday was getting better up until yesterday – now keep in mind nothing horrible happened, but it wasn’t as great as days before. Friday they said “if she keeps going the way she is - we're looking at a 5-7 day homecoming time.” But then yesterday she started showing signs of withdrawal. Now here’s the thing about withdrawal- the signs are actually signs that we have a little baby and since babies can't say "I'm withdrawing" the nurses and doctors have to evaluate these signs and give her scores based on what is going on and assess whether or not she is withdrawing and how that will effect her. Translation: Pretty much licking their finger, sticking it up in the air and guessing which way the wind is blowing. This is where things will start to slow down, although it’s hard to believe they can go any slower. We got a 7-10 day homecoming time quote the day before yesterday, I think, it’s hard to pinpoint when, and the days are meshing into each other. We are not getting our hopes too high up- it would be great to bring her home in 5 days- but we're just going to take it as it comes. Like addicts do, we’re taking it one day at a time. No more countdowns for this girl.

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