I like to joke about Charlotte's prematurity. It's the way I handle things that would otherwise find kinda depressing. The thing is-- we have some pretty funny stories.
Not funny like "Knock, knock, Who's there?" kinda funny. But funny like, "Seriously?!? Can you believe how many stars had to align for that to even be possible?" kinda funny.
And when I joke about it, it's OK to laugh. Because I wouldn't be joking about it with you unless I felt comfortable with you. Because NOT laughing at it, makes the situation really, really sad. And I don't want to cry with you. I've cried enough on my own. I want to laugh with you.
What's NOT OK? Making jokes yourself. I know, it makes things unfair, but it's a simple rule. You can laugh at my jokes, you cannot make jokes yourself. My kid. My jokes. Got it?
'Cause really, when you say things like "Oh, you just didn't want stretch marks, eh? Ha ha ha," it makes me want to hit you. And I'm not a violent person. I would give anything to have a full term child-- yeah, even stretch marks. Yes, I'd love to be 60 pounds overweight if it meant my baby came at 40 weeks. So, No, I didn't deliver early to avoid weight gain. Those kinda jokes? Bad.
When I make light of something, it's because I have been through hell to get there. It's a rite of passage. And I need to be able to laugh about this journey sometimes, because otherwise, if I cannot laugh, the past 9 months have just been horrid. If I cannot find some humor in this journey, then I don't want to think about it at all.
But I'm not ready for your humor yet. Maybe in about 15 years.
Maybe.
Monday, November 8, 2010
Sunday, November 7, 2010
The Fear
Disclaimer: I know, I know. Charlotte is doing so well. This post is not about reality, but about the perception of reality. This is what preemie parents live with. Sometimes it is so strong you can barely sense the world around you. Other times, hours pass without even thinking about it. Some grow out of it. Some don't. But this is it.
I call it "The Fear."
Peter calls it "Expectations."
I live with fear. He lives without expectations.
Either way, it's how we, as parents of a micropreemie, cope. It's how we get through the day sometimes. Now that winter is officially here, it's how I make it through most days. Some may think we're crazy. Others might enable our coping mechanism. Other preemie parents give a knowing nod. "Free-range" parents probably have a stroke.
Every day I wonder if today will be the day that Charlotte gets so sick she'll go to the hospital but never come home. Every day I look at her and wonder why she made it through the night. It's a blessing, in some ways. I appreciate every.single.smile. I anticipate her, I know her moods, I know when something.is.just.not.right.
In other ways, its a curse. I'm terrified of becoming "too" attached. I can't make plans for her. She'll be one in February. But I can't think of what her birthday will be like. I can't. Because I live with the fear that she'll never see it. Peter has no expectation of celebrating her first birthday. This is not to alarm you-- Charlotte is as good as ever. She's healthy, she's making significant progress. But as you may learn, you never trust a NICU baby. A simple cold put her in the hospital for a week. What will the flu do? What would pneumonia do?
The frightening thing about "the fear" is that just as you begin to convince yourself that it's way out of control, something happens. Your child goes septic or stops breathing or has a horrible day or night or moment. And the fear is back.
And so every day, we wake up, never knowing if it will be the last one with Charlotte. Maybe it's a good thing. Maybe it will cripple us. But it's the reality we live with, every day. The majority of babies born at Charlotte's gestational age and size do not survive. Charlotte has.
But the knowledge that she's "beating the odds" nags at you; it eats away at the back of your mind, and you wonder-- how many times can she win?
I call it "The Fear."
Peter calls it "Expectations."
I live with fear. He lives without expectations.
Either way, it's how we, as parents of a micropreemie, cope. It's how we get through the day sometimes. Now that winter is officially here, it's how I make it through most days. Some may think we're crazy. Others might enable our coping mechanism. Other preemie parents give a knowing nod. "Free-range" parents probably have a stroke.
Every day I wonder if today will be the day that Charlotte gets so sick she'll go to the hospital but never come home. Every day I look at her and wonder why she made it through the night. It's a blessing, in some ways. I appreciate every.single.smile. I anticipate her, I know her moods, I know when something.is.just.not.right.
In other ways, its a curse. I'm terrified of becoming "too" attached. I can't make plans for her. She'll be one in February. But I can't think of what her birthday will be like. I can't. Because I live with the fear that she'll never see it. Peter has no expectation of celebrating her first birthday. This is not to alarm you-- Charlotte is as good as ever. She's healthy, she's making significant progress. But as you may learn, you never trust a NICU baby. A simple cold put her in the hospital for a week. What will the flu do? What would pneumonia do?
The frightening thing about "the fear" is that just as you begin to convince yourself that it's way out of control, something happens. Your child goes septic or stops breathing or has a horrible day or night or moment. And the fear is back.
And so every day, we wake up, never knowing if it will be the last one with Charlotte. Maybe it's a good thing. Maybe it will cripple us. But it's the reality we live with, every day. The majority of babies born at Charlotte's gestational age and size do not survive. Charlotte has.
But the knowledge that she's "beating the odds" nags at you; it eats away at the back of your mind, and you wonder-- how many times can she win?
Prematurity Awareness Month
For the next few days, I'm going to blog about what life with a micropreemie is like.
It might be uncomfortable. It's going to be honest. Sometimes it will be funny. Other times it will be sad. But if no one talks about what life is really like, then you'll never know, right? So here it goes.
Life with Charlotte, as we know it. Look for it on a blog near you.
It might be uncomfortable. It's going to be honest. Sometimes it will be funny. Other times it will be sad. But if no one talks about what life is really like, then you'll never know, right? So here it goes.
Life with Charlotte, as we know it. Look for it on a blog near you.
Fake Out
As my blog friend Richard will tell you, feeding preemies is... well, something that shouldn't be written on a family blog.
She's back to taking nothing. In the tube it goes. On with our day go we :)
She's back to taking nothing. In the tube it goes. On with our day go we :)
Friday, November 5, 2010
Threats Work
So just as we were threatening to start solids due to her lack of interest in the bottle, Charlotte took 30 mL last night, 40 mL today at noon, and 45 mL at 6pm. That's more in a 24 hour period than she's taken in the last week combined.
I know I'm jinxing this by putting it out on the internet, but....
WOOOOHOOO!!!
I know I'm jinxing this by putting it out on the internet, but....
WOOOOHOOO!!!
Wednesday, November 3, 2010
I know, She's Cute, Right?
11/2/2010It's either one.
Charlotte's had three doctor appointments since she was discharged a week ago. Everyone agrees that she looks pretty great. I think they are correct.
Here's a run-down of her latest stats:
Weight: 6.4 kilos (14 pounds even)
Length: 58.5 cm (23 inches)
Heart: Her heart rate is finally coming down to a "normal" range (I say this, even though she's been elevated all day... hopefully I'm not jinxing this). Her heart rate while sleeping is usually somewhere around 100-120 and when awake, her heart rate is sitting at 150. We believe that being back on the diuretics has made breathing so.much.easier, which, in turn, has lowered her heart rate. That's the theory at least.
Lungs: She's still on 1/8 L, and is very, very happy there, so we're not playing with it. If it works for her, it works for us. We've learned our lesson. She has an appointment with the pulmonary department later this month, so we'll work with them on weaning.
GI: Charlotte's taking 99% of her feeds through the tube still, which is frustrating at times, but not unexpected. She is still on honey-thick liquids, so it must be so difficult for her to get anything out of the bottle when it is offered to her. Of course she isn't going to take anything! Sigh. It is disappointing though, that after two months of being offered a bottle, she hasn't made any significant progress. So we're starting to look to the future. Spoon feeding! We'll work with her Speech Therapist on rice cereal soon. Maybe that will offer her more oral feedback. Cross your fingers for us!
Eyes: Charlotte's eyes were examined when she was admitted to the hospital last week, and we have another follow up appointment next week to check her eyes again. They are just watching her a little more closely, as one of her eyes has started to get "stuck" on some objects. Nothing too much to worry about-- they are just being cautious.
Vocal Cords: Her stridor comes and goes, and doesn't seem to have any pattern, other than it's worse when she's sick or sleeping. She will be scoped again in December.
Meds: Her prilosec was just increased to a more weight appropriate dosage. She's also taking Aldactone, Diuril, KCl, Albuterol and Flovent. (Thank goodness for 18 hours of nursing, right?)
Early Intervention: She sees Speech Therapy for an hour and Physical Therapy for an hour each week.
And that's about it!!
Another Request
It's amazing how much need there is, isn't it?
When Charlotte was born, a woman in our church emailed me. She told me how happy she was for our addition, how sad she was that the circumstances were so stressful. She was one of the few people to actually "congratulate" us with genuine sincerity {but not the only person}-- she knew we faced a terrible road ahead (her sister had a micropreemie) but she was genuinely happy for our family growing to a family of four. It was refreshing. Heather helped organize much needed help. She worked quietly and privately, without any fanfare at all. She emailed me regularly, just to check in, to see what we needed and how she could be of help. She emailed me just to say, "Hey, I'm thinking of you." Her emails helped me get through the day quite often. She seemed to know just when I needed a hand, when I was just not going to get up without help. Her emails lifted me.
Now Heather needs some "emails". She has recently been diagnosed with Myelodysplastic Syndrome and as you can imagine, she and her family need some help.
A website has been set up by her fabulous neighbors. The website allows people to donate (to help with the extreme financial burden), to sign up to bring meals, to help with Jayson's growing to-do list, and my personal favorite: a prayer calendar. The prayer calendar allows Heather to know that someone in particular is praying for her that day. So those days when she just can't get up, when she needs a hand up, she'll know who is offering her one. I love it.
If you can help, in anyway, please do.
When Charlotte was born, a woman in our church emailed me. She told me how happy she was for our addition, how sad she was that the circumstances were so stressful. She was one of the few people to actually "congratulate" us with genuine sincerity {but not the only person}-- she knew we faced a terrible road ahead (her sister had a micropreemie) but she was genuinely happy for our family growing to a family of four. It was refreshing. Heather helped organize much needed help. She worked quietly and privately, without any fanfare at all. She emailed me regularly, just to check in, to see what we needed and how she could be of help. She emailed me just to say, "Hey, I'm thinking of you." Her emails helped me get through the day quite often. She seemed to know just when I needed a hand, when I was just not going to get up without help. Her emails lifted me.
Now Heather needs some "emails". She has recently been diagnosed with Myelodysplastic Syndrome and as you can imagine, she and her family need some help.
A website has been set up by her fabulous neighbors. The website allows people to donate (to help with the extreme financial burden), to sign up to bring meals, to help with Jayson's growing to-do list, and my personal favorite: a prayer calendar. The prayer calendar allows Heather to know that someone in particular is praying for her that day. So those days when she just can't get up, when she needs a hand up, she'll know who is offering her one. I love it.
If you can help, in anyway, please do.
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