This is the story of my life as a SAHM to a deaf-blind former 24 week preemie. Isolating, frustrating, heartbreaking, and so worth it.
Wednesday, January 31, 2007
Double Trouble
Today I have two former 24 weekers at my house. Noah's best NICU buddy Abby is spending the day with us since her mommy's on bedrest and her daddy needs to get some work done. Being the angels that they are, they happily played away the morning and now are both asleep. It's interesting to see the two of them together. They share there preemieness in common, but are such different little people. Abby's quiet; Noah's the life of the party. Abby can walk and talk and eat real food; Noah can't do any of those things. But he can crawl and babble and drink his Pediasure and all of those things have to come first. And he's much more advanced at the getting into trouble skills. I have never once seen Abby climb anywhere dangerous, she doesn't try to stick anything into electrical sockets, and she's not nearly as adept at removing child-proofing materials from around the house. It's too bad they don't test for that stuff on developmental assessments.
Sunday, January 28, 2007
Bye Bye Baby Gear
I talked to my aunt yesterday and she told me about a family of refugees from Africa that she's been helping out. She needed to bring their new baby (7 weeks old) to the doctor but they didn't have an infant car seat. She wondered if we could part with Noah's since he's too big and also if we had any other items we could spare. As dutiful first time parents we've been hoarding all of Noah's items "just in case" but as my health continued to not improve the likelihood of us trying for another baby slowly disappeared. It was hard to admit that we're done, but it was freeing to drag all of that gear out of the attic and pack it into our van to be brought to this family. I'm glad to know that they will be able to use it, even if we won't. Noah had a blast playing with everything as we gathered it in the living room. It was amazing to see how much he's grown in only the year that he's been home from the NICU. Here is Noah in his carseat for the first and last times. When I look at a baby who couldn't move his arms or neck at all, didn't open his eyes because he couldn't see, and came home with all of the tubes and wires of the NICU still attached I'm amazed to see just how much of a fighter my little man really is.
December 1, 2005
Saturday, January 27, 2007
Communication Breakdown
How do you explain to a child with the motor skills of a 15 month old and the language skills of an 8 month old the meaning of the word no? I think it's a really bad idea for Noah to push his ride on toy over to the fireplace so that he can climb on top of the mantle and jump off. I also would prefer that his rocking chair not be used as a ladder to help him scale the bookcase so he can see if his drumstick is strong enough to break the glass in front of our African sand art. But he doesn't understand the word no. He interprets being removed from the situation to mean "Try again, and this time see if you can jump off before Mommy crosses the room." I know that toddlers aren't exactly cooperative when it comes to obeying the rules or being safe, but it's frustrated to know that he just doesn't "get" the rules. A few weeks ago all of Noah's batteried toys decided to die on the same day. Noah was clearly frustrated (evidenced by screaming fits on the floor), but I had no way to explain that the batteries died and we have no more and Daddy will get some after work. He just spent the day trying to get broken toys to work and crying when they didn't and it broke my heart. I want him to understand, but I know that it's going to take lots of time and therapy before that happens. Hopefully we won't kill each other between now and then.
Wednesday, January 24, 2007
One Year Review
Yesterday we had our 1 year Early Intervention review and it went really well. In most areas Noah made 1 year of progress, which is about what you want to happen. Of course he's still pretty delayed in speech and has "abnormal feeding behaviors", but that was not unexpected so we're happy. Our case manager brought up the big bad word again... "preschool". Preschool isn't a bad thing necessarily, but she's talking about special ed preschool. Apparently in our county special ed preschool is 4 days a week all day. And you can't go visit beforehand because of privacy laws. So I'm supposed to send my baby away for 24 hours a week with no idea or say as to what's going on? Does that seem like a bad idea to anyone but me? Spotsy isn't as bad (2 days a week, 1/2 day) so maybe we'll move back. Or maybe we'll become gypsies or join the circus or homeschool. We have a month to decide so I'm sure we can come up with something.
Monday, January 22, 2007
Deal or No Deal?
Sometimes when I feed Noah I feel like I'm playing a tv game show. Do I play one more round? Do I risk the 4 ounces he's already taken to try for ounce #5? Do I try for the ultimate goal of 6? Today the bet paid off. Noah took five ounces of Pediasure and went right to sleep. No vomiting, no crying. But I don't always win. Sometimes I'm that person that you watch on tv and shake your head. "She should've stopped at 4, you say.". But tv game shows are different, because they don't really matter. If you lose all of your prize money on Deal or No Deal you go home just the same as you were - no richer, but also no poorer. But food is life and death. If Noah doesn't eat, then he doesn't gain weight. If he doesn't gain weight then we have to start having conversations that we'd rather avoid. Conversations about "failure to thrive" and "g-tubes" and "in-patient feeding therapy". So maybe it's not so much like a game show after all.
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