Monday, November 17, 2008

A sample of what's going on in my brain...

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Unbelievably busy. I wish there were about 12 more hours in a day. My schedule consists of generally the same routine -

Wake up
Pump
Feed Christian breakfast, wash him up, get him ready and take him to school
Come home, wash up and get ready
Pump
Go to the hospital - hang out with Lauren, talk to the doctor, nurse, respiratory therapist and anyone else who's helping her. Stay there for about 2 hours.
Pump (either at the hospital or at home depending on how much time i have)
Do errands - grocery shop, target run, dry cleaner, etc.
Come home and...
Pump
Wash dishes
Wash pump parts
Start prepping for dinner
Pump
Go pick up Christian from school
Come home and if Ben can leave early, he'll meet us at home to give Christian a bath...if not, I have to give Christian a bath
Make dinner
Pump (eat before or after pumping, depending on the time)
Clean up
Wash dishes
Pump (while Ben gets Christian ready for bed)
Go to the hospital
Come home (around 11pm)
Pump (while Ben starts washing the pump parts)

I hate pumping - it's exhausting. But, I have to continue doing it for Lauren. That's the only thing I have to offer her right now. I want her to take breastmilk for as long as she possibly can. I'll pump for 2 years if I have to.

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If I were still pregnant, I'd be 29 weeks 1/7 days today. Lauren is now a month old. Or, -11 weeks 4 days old. I know, it's confusing. There's several ways to place an age on a preemie baby. There's "actual" age, which is the day she was born - so she's a month old. And then there's "adjusted" age, which would be the age she would've been if she was born on her due date of Feb 2, 2009 - hence, the -11 weeks old age. This is why preemies are considered "delayed" - So when Lauren's 1st birthday comes around, she'll be the equivalent of an 8 month old since she was born 16 weeks early. It sucks in that sense because on her dohl, she'll still look and act much like an infant. They say it generally takes 3 years for preemies to catch up - mentally and physically. I'm okay with that to a certain extent. I know I shouldn't be worrying about things like this but I'm already concerned about annoying people comparing my baby to a full-term baby and saying shit like, "oh, she's so small" or "she seems younger than that.." I don't want to have to sit there and explain to them that she was born 16 weeks early but I also don't want them to come up with their own conclusions either. (I know, this shit is so irrelevant but hey, it's what's on my mind right now so I'm writing about it.)

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Lauren got off the ventilator a few days ago and now she's on a machine called a SiPAP which is like the CPAP except instead of continuous air pressure, it's a certain amount of breaths per minute. We're hoping she gets off the SiPAP and eventually back to the nasal cannula. The SiPAP looks so uncomfortable and she really hated it when they first put her on it. She was kicking and flailing her little arms and crying. It was so sad to watch.

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People often ask me about how Lauren's doing. I don't know how to answer that, really. I say, she's doing okay and usually leave it at that. Generally, ppl think that since she's alive and i'm not talking about her having any brain bleeds or something dramatic, that she's in the clear and that she'll just grow like a regular baby, the doctors will fix anything that may come up and then come home soon. Well, not exactly.

While I was pregnant with Lauren, I often referred to her as the "muffin in my oven". So try to imagine cooking a muffin in the oven...and you're supposed to bake it for 40 minutes. And let's say the oven stopped working and the muffin was only able to cook for 24 minutes. It's not going to be completely cooked, right? There will be some wet spots, it won't be totally risen, it'll still be doughy in the center and it'll stick to the sides and if you fiddle around with it too much, it'll break and you won't be able to put it back together again. It'll be super fragile.

And let's say, you take it to the muffin doctor and the muffin doctor doesn't have as good as an oven as you did (because no oven is as good as the one you had for your muffin) but he's got a make-shift toaster oven that he's going to try and put your muffin in and try to cook it some more to make it just like a 40 minute fully cooked muffin. He tries to maybe add some more dough to help it rise and he pops the muffin into the toaster oven and tries to cook it. Your muffin was used to being cooked at 350 degrees in your oven but in the toaster oven, he has to tweak it, little by little, maybe start it off at 275 and then slowly increase the temperature. He lets a little time pass and then checks the muffin again. And he sees that the muffin isn't quite cooking right so he tries to do something else - maybe add some more flour or more yeast and tries to cook it some more. He tries to fine tune whatever he can, to make the muffin as close to a fully cooked muffin as possible. He may get pretty close - from the outside, it may appear fully cooked but on the inside, it may still be doughy or maybe even too dry. You just never know.

Sometimes, you can hit the jackpot and get the muffin pretty much like a fully cooked muffin inside and out - other times, not so much. I'm hoping we hit the jackpot.

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Btw, Lauren is now 2 lbs! She's a tiny bit over 900 grams. She gained about 15 grams yesterday but then lost about 5 grams today. So she's teetering back and forth on the 2lb mark.

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Christian is our joy and blessing through all of this. People often say how hard it must be to have to take care of a toddler at home while having a baby in the NICU. Sure, it's alot of work but I wouldn't have it any other way. He's truly been our rock in all of this. His smile, his sweet sweet smile...it literally melts away all the stress we're going through.

He's already such an awesome big brother. He often talks about Lauren. He says things like "Ishtian want to go see Rauren (he can't say the L yet) and give her hug...rike diff (aka 'like this')" and then makes a hugging motion as he swings his body side to side. And Ben taught him a little saying...... so Christian will point his finger out away from him and say, "Hey you, top it! Don't bodder my sishter!" It's the most adorable thing ever. And he'll even ask to pray for her so you'll see him holding his hands and closing his eyes tightly and we'll pray outloud for God to help Lauren get healthier and bigger so she can come home and then he'll say "amen".

I think it's amazing that at his young age of 2 1/2, he can grasp the concept that his baby sister is out of mommy's belly and in the hospital where the doctors are making her owie go away and that she'll be home soon. And that he has a natural protective instinct that he's eagerly waiting to exercise. I just love him to pieces and I think Lauren is lucky to have a big brother like him. Ben and I were saying how we both wished we had an older brother like Christian.

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Stress to the umpteenth degree. I'm running on fumes. I have much to be thankful for but much to be stressed out about too. Can you believe that Lauren's hospital bill alone for the duration she'll be treated (about 3.5 months) will be around $1.5 MM?? It sounds like alot, but then when you think about everything and everyone that's involved - around the clock team of doctors, specialists, labs, tests, xrays, blood draws, equipment, hospitalization, nurses, drugs, treatments - I guess it makes sense. Anyways, our PPO insurance only covers 80% so we're responsible for the 20%. There's a cap though of how much we need to pay...and I'm trying to work with a Financial Counselor and Social Worker at the hospital to see if we qualify for some type of financial assistance through Medi-Cal or CA Children Services to cover at least part of that cap.

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2 days before Lauren was born, I was supposed to officially start working again. My old boss wanted me to come back to work for him even though he knew I was pregnant. For those of you who don't know, (big inhale...) I was the Director of Project Management for an energy consulting firm that worked with local utilities and commercial property owners/managers on identifying ways to make their buildings more energy efficient using new technologies while getting rebate money from their local utilities to help offset the cost (out of breath). Sounds fancy, don't it? But not really. Anyways, he offered me an opportunity to make a 6-figure income even knowing I was pregnant and was willing to accommodate me and allow me to work from home most of the time...it was a dream job come true. For 2 weeks, I worked on familiarizing myself with our products and services and even developed an in-depth procedure plan for the program I was going to manage during the first time I got admitted to the hospital.

I was planning on working up until my delivery, taking a few months off and then returning to work full time. We wanted to save for a year and buy a new home. That was our plan. It was a good plan. It was the plan I can't seem to let go because it was our ticket to a new home - with more rooms...and a yard! I soooo want a yard...is that too much to ask for? Now, that dream has been put on hold...for who knows how long. It's amazing how drastically and quickly things can change.

One minute you're planning out your dream home and the next minute, you're stressing about hospital bills as you've just finished pumping breastmilk for your 24 weeker preemie baby who's in the NICU .... and you're typing about it on your blog.

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Welcome to my world.

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2 comments:

Anonymous said...

this blog makes me dizzy and anxietal. i canNOT believe your day and night ... i'm seriously exhausted just reading this and OMG about lauren's hospital bill!?!? i hope you get the financial assitance you need. i'm so glad ben's there to help you as always and that christian is your ray of much needed light. miss you sue!

lucy said...

oh man.... I forgot how hard it is to pump.... and oh man, I can't believe Lauren's hospital bill. That is absolutely nuts. It sucks that you even need to think about cost during a time like this. I'm so happy to hear that Lauren is gaining weight and doing better... and I know you'll hit the jackpot :P hope to see you soon.