Shrink

(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.

Why pumping frequency matters

Nicely put and informative.

Exclusive Pumpers

Picture 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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New Digs, New Mask, New … Mistake?

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!

Just got checked..and I needed it.

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.

and we go backwards…

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.

Adventures in Pumping

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.

Why I cut people off…

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.

Religion – Back away if you’re a bible-thumper

RELIGION

(Side note: Its taken me a couple days to write this post because I had to calm down before I could do it. I was that mad over a particular incident.)

Different people believe different things, and that is their right. However, people really need to learn to exercise basic common sense when they’re dealing with parents who have terminally ill and/or critically ill children.

Let me put this simply for those of you who might not understand: Take the parents’ lead. If the parents are not reaching out, expressing their faith, and the questions of faith that might arise when they have a situation like this, then you do NOT need to bring God into it.

Some people it might comfort. Others it might piss off. I’m in the ‘piss off’ category.  If you do feel the need to bring God into it, and you cannot keep your mouth shut, then at least listen to what the parent(s) are saying. If we’re saying stuff like “I never understood the disdain that atheists had for religious people until this very moment”… You can be fairly sure that its time to be quiet. Because all you are doing is causing hurt and/or anger.

But you know what’s even worse? When people acknowledge that they know they’re pissing you off and/or hurting you, and they KEEP DOING IT ANYWAYS! If you can acknowledge that you’re screwing with the emotions of someone who is already stressed to the limit, and you continue to do it anyways then you really need to stop and think about what you’re doing. You really need to think about it. Because, wow, while your talking about God and how that person’s children are super special in their own way, etc, etc, might have made YOU feel better? If it hurt the parent that you’re talking to, it doesn’t matter if it made you feel better. It doesn’t matter if you felt you had to say it.

You, my friend, are acting like a jackass.

Maybe you’re a well-meaning jackass. Hopefully it was just a temporary moment of jack-assery, but nonetheless. You’re acting like a jackass.

I went from having a decent, though stressful, day, to being so flipping angry and hurt that I wanted to put my fist through a wall. I genuinely like the person who put me this position, but after feeling like my obviously expressed thoughts were being blatantly disregarded so that this person could say what they needed to say… I don’t know if it’s a friendship I can maintain.

I don’t know if it’s a friendship I want to bother trying to maintain.

I’m going to give it some time, and see if I can talk to this person again someday. But I make no guarantees.

My relationship with God is my business. My rage and hurt towards him are something that He and I need to work out on our own, if we ever do.  I do not need my expressed fears about my children and any decisions I might have to make regarding them to be answered with consolations about God and a higher reason.

My kids are sick. ‘Higher reason’ can kiss my rear.

Rollercoaster

The good news is G is still off the vent.  However, she’s at 4 litres of oxygen, at 60 percent. (Room air is about 21 percent for reference.) The doctor did say this morning that as long as her blood gas (the CO2 level specifically) was good, they would not reintubate her. So, here’s hoping it stays good.

She’s not tolerating weaning down at all. It concerns me. I also noticed on her most recent growth chart that her head circumference had fallen down on the charts. Now that can be explained by different people doing the measuring, but still… If I’m recalling correctly, microcephaly can have an association with PVNH. Microcephaly is generally linked with severe developmental delays and other problems to boot. So, please let the person measuring G’s head simply have been an idiot who can’t do a head circumference correctly.

G is in the 90^th percentile for length! A whopping 23.3 inches.  She’s about 40^th percentile for weight, coming in at a grand 9 lbs, 12 oz.  She looks chunky!! It kind of doesn’t make sense that she seems to be struggling so hard, but she’s gaining weight like a champ. Then again, they are giving her 80ml (or 2 and 2/3rds of an ounce) every 3 hours. But that does mean a couple things.

1.)    G can’t be too allergic to soy/dairy if she’s gaining weight like this.

2.)    My milk is doing a fantastic job of providing the calories she needs.

3.)    I should have told the doctors who told me I couldn’t breastfeed L to suck it!

She’s still receiving sodium chloride to assist with raising the sodium level in her blood. I don’t know how long that’s going to continue for.

Oh, and she’s taking caffeine. This irritates me. You know why this irritates me? Because I brought up using caffeine on her WEEKS ago, and was told no. That they hardly ever do that. That there’s no way they’d send a baby home on it. Uh… lo and behold, they’ve got her on caffeine, and have already said she’d probably come home on it.

I feel like its another case of “Lets not take the mom seriously. After all, she doesn’t know what she’s talking about. She doesn’t have a medical degree.” As near as I can remember, I have called almost every bloody thing at least a day before they did! The only things I didn’t have a clue about where her co2 and sodium levels, along with the brain malformation.

Grrrr.

…..

Anyways, you know what one of the most horrible feelings is? When you’re trying to pump, but you haven’t had time to grab anything to drink, so you know you’re dehydrated.  Then you’re trapped in your daughter’s room, which is in isolation, so its not like you can just jet out to get something to drink. Plus you’re waiting on the doctors to show up for rounds, so it’s a matter of how long you actually have before you have to do a frantic disconnect-and-tuck so you can be at the doorway listening to them. Half the time I get this look like “Eh..you didn’t have to be right here. You could have listened from over there..” Yes, I could have, but no, I won’t. My kid. I have a role in her treatment. Flat-out. I wanna know everything, even if its amazingly hard to handle sometimes.

And it is. I wish I could just blindly place faith in the doctors, but I can’t. I won’t. I refuse to be the little sheeple person who sits back and doesn’t even bother to educate herself to prepare for things. When you have an ill child, it is your responsibility to learn everything you can. To participate in any way you can.

You really are your child’s best advocate. You are the only one who really, really knows your child. And maybe its wrong of me, but I’m going to even say that in 95 percent of cases, the mother is the best advocate, because I think we notice more than the fathers do. Now there’s always crappy moms and stuff like that, so it doesn’t always apply, obviously.

…

Today is not a good day. Today is a ‘I feel like this is hopeless’ day. I honestly wonder if I’m ever going to bring my baby home. And if I do…am I just bringing her home to die? You wouldn’t believe how much that tears me up just to think about it.

Oh… yeah… I’m going to do a separate post about Religion. Its not going to be nice, so if you are a bible-thumper with a righteous indignation fire easily burned under your rear… don’t read it.

Wow!

So, I had a good friend – H – come up to visit today. She drove clear from Georgia, so it was a pretty special occasion. I think G must have sensed that because…

About ten minutes after we were there, they successfully extubated G! That’s right, ladies and gents, G is off life-support!

She’s on a really high flow of o2 for a little tyke – 3 litres, to be precise – but she is OFF. THE. VENT!

..and, as you can see, she even opened her eyes for a little bit =)

PLUS – on top of that – H confirmed that she did think that G does have at least some hearing and eyesight! I think she does too. I’m not sure how good it is – but there’s gotta be something there! When we were passing the mobile over the crib, her eyes flicked to it, and she tried to turn her head in the direction it was going. When I was talking to H and to G, at certain changes in tone – G’s eyes would open, or she would at least move a bit more. She would also react when her monitors beeped!

Also, because G’s bum is so sensitive that the Huggies diapers are just not cutting it, the NICU said we could cloth diaper! =) =) We’ve got to make a list of instructions, bring in a wetbag,clothies, and one that will never be used for anything but weighing purposes – and they will use them on her! I’m hoping it really helps her bum. Its not broken out yet, but it looks so red and irritated.

So far, today has been freaking…

AWESOME!!