Archive for May, 2013

(Side note: I had never actually truly intended to talk with this Dr. I just basically said I would to make the social worker happy because she was worried about me. But then there was That Day. That really, really bad day where  I ended up calling KbyK and telling her that she needed to stay on the phone with me. I was scared of how close to the edge I was. She did. She stayed on the phone with me for as long as I needed, and got me over that hump. Then yesterday, the Dr actually called me to see if I was still interested in meeting. I knew at that point that even if I wasn’t particularly interested in meeting her, I needed to. So I said yes and we met this morning.)

I talked with a psychiatrist/psychologist (Never can remember which one is the one that can’t prescribe Rx) today. I’m glad that I did. I have another appointment with her next week.

It is a service offered to NICU parents, and it is billed under the child so even if you don’t have insurance, but your baby does, you still have access to the doctor. Its a good thing. I think, especially for long-term NICU stays, its probably one of the best things they can offer.

Because I needed to talk. I needed to talk about everything to someone whose only job was to sit there and listen to me talk about what I needed to. She didn’t have anyone distracting her. We weren’t talking around a watercooler on break. Nothing like that. It was just me and her in a room by ourselves, talking.

She was a great listener.

I’m not going to go into details because its not necessary. Plus, unless you’ve been in the situation you really wouldn’t get it.

I’m under doctor’s orders for another round of alcohol, chocolate, bubblebath, and Walking Dead. I’m also to absolutely NOT think (as much as that’s possible) about G or L for 24 hours. I’m especially not to go visit G. I’m also supposed to take myself to Taco Bell and get my favorite noms, then veg out in peaceful bliss for at least a couple hours.

That, I can do! I think. Well, hopefully.

One of the more awesome things was that she’s a pumper, too. So she GOT it. We had quite a mini gripe-fest on how much pumping absolutely sucks. She also said that if it weren’t for the fact that I was backed into a corner with G needing b-milk because she can’t stand formula, that she’d highly recommend I quit pumping. That its just too much stress right now.

Just nice to hear someone acknowledge that. You know?

If my next meeting with her is anything like this meeting was, I think she’ll force me to reevaluate my opinion of head doctors. I’m actually looking forward to talking with her again.

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Nicely put and informative.

Exclusive Pumpers

FaucetPicture this. Someone comes to you with the following task:

1. Using a faucet, fill up an 8oz cup with water
2. Never let the cup overflow
3. Never turn off the faucet completely, but you can adjust the flow of the water
4. Several times a day, using a straw, this person will drink from the cup

So, you place the cup in your sink and turn on the faucet. At first, you want the water to come out quickly, but after a short while, you realize that the cup is almost full. So, what do you do? You turn the faucet down (but not off).

Sometime later, this person comes with their straw and drinks until the cup is almost empty. What do you do now? You turn the faucet back up so that water comes out quickly again, and when it’s almost full, turn the faucet down…

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G is in her new digs. She got moved from one unit to another because of hospital renovations. The new isolation unit is much bigger and nicer. Even has a couch for parents to chill on!

She’s still on CPAP. They put her on a nose mask instead of the traditional prongsy-thing because the regular doodad (I wish I knew the name for it) wasn’t staying on her little snub nose and maintaining pressures like it should.

The new nose-mask makes her look like a little piggie.

She’s due to get her 2 month immunizations next week, so they gave me the stuff to look over. I think I’m going to request we space them out. Give her like a week in between each one. G has proven she’s super sensitive to things, so why risk a reaction by giving her a bunch of vaccines at once.

I asked when they last did an x-ray, and the nurse wasn’t sure, so she pulled it up and I read over her shoulder. We both got a shock when we read at the bottom of the report “Persistant Cardiomegaly.”

…Uh, excuse me? They’ve never mentioned that before. So we proceeded to go back through her x-rays. Not one place has cardiomegaly mentioned. We know G has a potential ASD, but that’s it.

So needless to say the nurse will be bringing this up with the doctor. Not that we think G’s heart is enlarged, but that’s not a nice thing to have in the reports if its not true.

Her CO2 level is back up to 74 BUT her PH level is fine, so they’re not too concerned about acidosis.

The x-ray did show minimal improvement on her lungs, by the way. I’ll take that over no improvement, or worsening, any day!

A coworker just flat out told me to stop comparing L and G. That by doing that, I wasn’t doing any favors to either of them. They both have their own separate problems, so I can’t say “Well, I don’t see this in G…” because its not fair to her.

I needed that. I really did. Even though I think I *knew* it, I needed someone else to confirm it. To slap me in the face with it.

Brief post for now.

G is back on CPAP.

They had to keep going up on her oxygen and she sounded pretty rough, so they ordered an x-ray. X-ray revealed that her lungs were showing further collapse, and it was also obviously that she was very congested up top. So, she’s back on CPAP.

At least its not the vent, right?

At least they still think she should improve after she fights off the Rhinovirus, right?

She was almost completely unresponsive today, until we touched her and got her good and ticked off. Normally she just looks like she was sleeping. I think going back on the CPAP was a good thing – something she needed – because she looked almost lifeless. Her little lips were so pale.

She still has no voice from the ventilator.

Getting hard to maintain any sort of positive outlook.

On a semi-amusing note… My coworker had apparently sworn to herself mentally that she was not going to call G by her middle name. (What G is shortened for.) She was going to call her by her first name. She walks in, over to the crib, and the first thing she says is.. “Hi, G.”  Bwuahahaha! G’s full middle name is basically her official name in the NICU. No one even bothers trying to call her by her first name anymore. I win I win I win I win! Haha!

I knew that name would stick! I knew it!

Last night I was venting my frustrations to K about G’s illness and my general distaste of pumping. I said “I wish I just felt like the breastmilk was actually helping her, you know?”

He had the perfect response. He immediately cracked “It IS helping her. Have you seen her cheeks? She looks like a chipmunk!”

We know she’s retaining water now, but regardless of that she does have some serious chubby cheeks.

Please let one thing go right. Just one thing. Let just one of her problems resolve itself. Just one thing. I just need something to hang on to. Something to work for. Something to hope for.

Because right now hope is circling the drain. Just like I am.

You know you’re  a little too used to pumping when: You’re at work, finished pumping, and halfway down the stairs to return to work before you realize that you forgot to pull your shirt down. So your lovely NatGeo boobies in their zebra-bra (because Target had exactly two patterns of bras that actually fit your boobs) glory  are on display.

You know you’re finally achieving that state where you can’t feel every letdown sting like a bitch when: You think you’re done pumping, but you’re not, as is evidenced by the stream of milk that sprays across your skirt. Because not only were your boobs letting down because you stopped just a moment too soon, but you also forgot to tuck away the glory peaks because you got distracted gathering stuff up.

You know your four year old is a little too observant of what you’re doing when: She tries to poke her fingers in the holes of your flanges before you get the pumps put on. Because she’s seen you do it to make sure your nips were dead-center. She also cackles like a hyena when you squeak and exclaim “Get yer fingers outta my holes!”  followed by “I mean… STOP TOUCHING MY BOOBIES!”

You know you’re doing the right thing when: You’re able to give your four-year-old a 4 oz glass of “Mommy’s Almond Milk” to help boost her immune system AND still have enough milk to deliver a full day of feeding to G at the hospital! PS: You also should not be a coward and stop avoiding giving her boobjuice whenever Daddy is around.

You read that right, folks, I’m giving my 4 year old breastmilk! So… there 😛 Its not straight from the tap, but she’s still getting it.

You also know that you need to pay attention to what you’re doing when: You pop out the wonder-boobs before you have your strap-on hands-free setup ready, and end up frantically grabbing and holding the bottles under your nips to catch the streams that have sprung forth… while yet again your 4 year old laughs like a freaking hyena at you.

When I was pregnant with L, I became friends with a great group of women. When L was having all her initial issues, they really supported me, and for that I will forever be grateful for them.

With that being said – I no longer talk to 90 percent of them. I own up to it. I took that step myself. Deleted the majority of them from my facebook page and from my phone. At the moment I have about 60 people total on my ‘friends list’.

And I know they wonder why. Just like I know that I can probably never really make them understand.  But I think that any other parents reading this, who have very sick kids, can understand.

I did it because I had to. I did it because every time I logged on or talked to them, I saw multiple posts of obviously healthy babies. I saw complaints about their kids having colds, or keeping them up all night. I saw gripes about colic and plans for the future. I saw it, and I was jealous. I saw it, and I felt rage.

Not rage or jealousy specifically directed towards them, but towards the world in general.

THEY got to make plans for the future. THEY had healthy babies. THEIR biggest concern at the moment was an earache or a cough. I don’t get to make plans for the future. I don’t have healthy babies. L will probably be dead when their kids are graduating high school.

And I can’t do that. The longer I was in that situation – of seeing SO many women who had it so good – the more depressed I became. The more my anger showed. Why did *I* have to have the so-sick baby? Couldn’t the problems have at least been distributed a little bit?

Yes, there were some babies who had some issues, but I think its safe to say that L by and far had it the worst.

…and now that I have G? Now, we know why I have sick kids. That doesn’t make it any better, though. It doesn’t make me stop wanting to scream and cry and shout and rage and WHY THE FUCK DID THIS HAPPEN TO MY FAMILY?! It just means that I have two sick kids. It means that whenever I hear about someone who is pregnant again, and I know that they’ll probably luck out and have another healthy baby… Its double the pain. Its double the rage.

I feel like the universe is giving me the finger.

So I distance myself. I cut myself off. I wish them the best. I genuinely hope that they all have wonderful full lives with their children. But I won’t. So I can’t – I refuse – to hurt myself even more by seeing hundreds of images and thoughts of ‘what could have been’.

What I deal with is what is, what was, and how am I going to handle it when the end approaches.

Yes, its selfishness, but its also self-preservation.

I’ve been messaged by a couple people offering to talk, and the only thing I can think is “How would you understand? How could you understand? You can’t, and I’m glad for that, but it doesn’t help me. You can’t help me. I wish you could. I really, really wish you could. But you can’t. So please, just don’t offer something that you can’t follow through with.”

Its kind of a case of “Its not you, its me. I love you, but I never want to see you again. ”

I wish I could make them understand. I wish I had the energy to try.