Monday, January 23, 2012

Official Parents of Preemies day

The first ever Parents of Preemies Day will be on  March 23rd, 2012! 

While I don't feel that my own courage and commitment need to be honored, I'm very pleased to announce that the courage and commitment of all preemie parents will be honored on this day. Yay!! 

Please follow this link for more information:

Saturday, January 21, 2012

9 months

Dear Little T,

What a month. All of a sudden you are making big strides, and the dichotomy of being a mom emerges again.

You measured, two days ago, at almost 27 inches tall. That means you've grown an entire FOOT since birth. A foot. Do you have any idea how long it took me to grow the last foot I grew? YEARS. And you've gone from nothing to over two feet tall in something like 16 months. I'll never cease to marvel about it, even though I've seen it a million times with other people's kids.

Your first tooth came in this month. During the week of Christmas break. While Daddy was sick. So, yeah, it's been fun. I spent the whole week taking care of screaming, angry T, when I'd gotten to really enjoy cheerful, happy T. I was so looking forward to spending a week with happy T, and playing, and cooing, and I got an angry, angry child. Seriously, I put you down and you screamed like I had stabbed you repeatedly with needles (much like when we got your shots).  Except this happened every time I put you down. Since we've been to the doctor, oh, weekly since Thanksgiving, I promise you, you are not in pain because I'm putting you down. You did, however, make me want to give you to the circus. Fortunately, the tooth popped through, you bit me, and I was sure all was well. But those crankies did not go away. They went away abouta week or so later when the second tooth came through as well!

Christmas sucked. I was excited about the idea of opening presents as a little family. And we did! Like two days after Christmas, because Daddy was so sick, he couldn't even get out of bed to go to Grandma's house, and I had to take you alone. After two presents, it was too much, and you started to cry.

There was plenty of good stuff - you learned to roll all over the place, so it's anybody's guess where you'll be if I leave you on the floor for a minute and come back. I'll put you in the living room, and you'll be gnawing on the dog's tail in the kitchen by the time I turn around.  I'm not joking; you tried to chew on my foot this morning, too. Also, you're getting up on your hands and knees! That sounds like no big deal, but you do it, and you rock, too! Yes, that totally means you're awesome, but it also means you're rocking back and forth, like you're thinking about crawling. You even launched yourself forward like..well, like a kid on a bike with training wheels going off a ramp, and landed about and inch in front of where you started. But hey! It's a start! You're going to crawl!

All my notes for this month have to do with the crankies. It overwhelmed us this month, but, as I said, you are true sunshine now that those darn teeth have come through. You were impossible to entertain for more than oh, three seconds at a time, and now you're happy as a clam to play with your box of diapers for an hour or so. I had to re-Ferberize you (YES, we do that. I love you more than I can say, but if you refused to sleep all night, or woke up 10 times a night, I'd kill myself and your Dad - obviously not in that order) because you were waking up at least twice a night, and Daddy's been working tons of overtime. He awesome for that - believe me - so we can pay your NICU bills, but I sure do miss him when you're crying in the middle of the night.

I had this whole internal debate with myself the other day - I thought it was very deep at the time. I wondered if I was spoiling you by holding you every night and rocking you to sleep and such. I always wondered what possessed parents to spoil their children, but I would give my eyeteeth and pinky fingers to keep you smiling. Half the time I worry that I'm not giving you enough love and attention and you'll grow up to be a sociopath (THANKS, Criminal Minds!) and the other half I worry I spoil you too much and you'll grow up to be a sociopath (Thanks again, Criminal Minds. Awesome show, truly terrible on the parent psyche).

Your new sound! You tell us very emphatically each day, "Da! DAdadadaDA! DA! Daaaaaa!" You even informed me that "Daddadada". Not a "Mama" in sight. Except for the class "Goo" and "Aaaah", you're not doing any more talking.

I love you. More every day, even when you're being a pill. Every day you give me another reason to laugh and smile. I can't wait to see what you accomplish next.


“Time doth flit; oh shit.” 
― Dorothy Parker

Thursday, January 12, 2012

Seriously. I have to stop playing on the internet.

This review of the nosefrida is so true and so funny.

A nosefrida, if you don't know, is this thing. 

This thing is gross. You literally suck snot out of your kid's nose with a tube. There's a little spongy thing that keeps the mucus from getting in your mouth, but it's still kind of horrifying. 

T hates it. HATES. He SCREAMS. Imagine tearing a child's arm off, like in the beginning of Stephen King's book IT (if the kid survived, of course). That's how he screams. He screams MUCH harder than say, when the pediatrician stuck his finger for blood and then squeezed and squeezed and squeezed it. He does NOT appreciate the nosefrida. 

However, when you have a child that has to go to the pediatrician say, at least once a week (actually, I've totally lost track. I've made a vow to keep a doctor visit journal) and usually for breathing issues, getting rid of snot is a priority. Those bulbs just aren't good enough. So yeah, I'm willing to use the greatest thing on the market for my son. As a matter of fact, I've bought three. (The dog ate the first one, so I bought a spare the second time). 

It's amazing. Your kid will act like you chopped off his arm and ate it, but at least he'll be able to breathe. 

Wednesday, January 11, 2012

I promise...

I'm working on T's monthly letter. However, I apparently love to post-steal, and here's another:

The Bloggess. I find, all too often, people mock depression. People mock the struggle, they mock because of those who abuse it for a disability check, they mock because they've never been there, and they mock because they can't see the bleeding. I suffer from anxiety. When I say suffer, I mean that. It's not the same. I'm perfectly aware that it isn't the same, but I think it gives me some empathy for those who suffer so much that they seriously don't have the will to live, and when they're finally rising out the depths is when they have the strength to commit suicide. How ironic is that? It reminds me of the phenomena wherein a terminally ill person seems to get well all of a sudden, right before he dies. And yet, people still don't believe. Everyone believes in friggin' breast cancer. How many don't believe/understand how many babies struggle to live, to breathe, even though the parents sacrificed everything to have them, and have done everything possible to have a healthy child? How many people, on the same end, don't believe that depression is real, or that it really affects people?

The Bloggess wants to see people wear silver ribbons for depression. I want to see more purple in support of babies like my son. My son, the beautiful light of my life, the cheerful happy child who is delighted to see anyone who will smile at him, that some people have said wasn't worth saving because he was born too early and so very very small. I have a lot of ribbons to wear.

Here's her original post about her struggles with depression: (I hope my ramblings didn't go too far off base).

For the babies: Prematurity awareness. 
For Depression. For every person who struggles to feel alive. 

Thursday, January 5, 2012

I missed World Prematurity day

However, this article gets to me, so I'm going to post it anyway, because the March of Dimes walk is getting closer.

From the March of Dimes website: 
The global toll of preterm birth is harsh. We estimate that worldwide, 13 million babies are born too soon each year. More than 1 million of these premature babies die before their first birthday. Here is a story from one of our friends in England, Honeybee Mum.

My girl was born in Africa at 26 weeks. We don’t know what she weighed, nobody bothered to check. We do know she had a 1 minute APGAR of 8. Then she was put outside on a table to die. After 6 hours they realized she was still breathing and ventilated her. In a shared crib. After 5 weeks she was sent home to die, in order not to clutter up the hospital. Shocking? Yes, but not so very far adrift from many preemies’ arrival all round the world. Including ‘western’ preemies.
My girl’s determination, strength and character shine through all of this. 6 years later she has a list of diagnoses that scare many medical professionals. She attends mainstream school, and speaks or understands several languages. She defies the odds at every turn. And yet our frequent blue-light rides in her ‘special van’ (ambulance) terrify us every time. When she’s lying blue-grey on the floor and I can’t find her pulse – again – I am at my most distraught.
My girl wants to be a dancer. A chef. A paramedic. She wants to build houses and paint. She wants to walk like her friends. She wants her body to work properly. She wants to be able to feed herself. To have a wash by herself. And a thousand other little-huge dreams. She roars with frustration and anger, then reaches deep and finds the strength to try again and again and again. I learn from her. I learn most of all to share a love of life lived in the moment, all the while holding onto dreams of the future. Dream big and aim high. Meanwhile do what you can today. My girl has taught me this.

I was going to write about the poignancy of driving miles to a hospital that hopes it can cope with her needs, on World Preemie Day. I was going to stop harping on about the history and the past. But while our babies are still demanding to come early into the world, their stories need to be told. Over and over again, until the unaffected world leaders begin to listen and hear their (silent) shouts for equity. For the care and attention that should be their birthright, their due. For the tables and waiting places to be taken away for ever. For their ongoing needs to be addressed and supported. For proper research, at the point of prematurity and on and on into the future lives of the ‘unlucky’ ones. Because yes, some come away unscathed. The few and far between ones. The lucky ones. Their terror journey has ended. For so many of us, the rollercoaster will continue to an unthinkable ending.
This problem is truly global, affecting families everywhere. Although the vast majority of preterm births and related deaths occur in poor countries, families in wealthier nations are also at risk of having a baby born preterm. In fact, the number of premature babies born in the United States has increased 36 percent over the last 25 years.

The March of Dimes partners with organizations around the world to raise awareness of the problem of premature birth. Today, November 17, 2011 — World Prematurity Day — we are making a global effort to draw attention to the global crisis.
Our global alliance partners include the European Foundation for the Care of Newborn Infants (EFCNI), Little Big Souls International Foundation in Africa and the National Premmie Foundation in Australia. We welcome inquiries from organizations who are interested in supporting these efforts.