Friday, August 28, 2009
Smooches
It may not be a face that only his mother can love, but his mother sure does love this face.
Wednesday, August 26, 2009
Tuesday, August 18, 2009
Baby For Sale
We are currently entertaining bids for the Midnight Monster.
Crew, previously known as the "Super Sleeper", is going through a bit of a "transition period", sorting out his feelings about swaddling.
I rewarded him this morning for last night's shenanigans with a big bowl of green beans for breakfast.
Crew, previously known as the "Super Sleeper", is going through a bit of a "transition period", sorting out his feelings about swaddling.
I rewarded him this morning for last night's shenanigans with a big bowl of green beans for breakfast.
Saturday, August 15, 2009
He Sits
Yes he does. Very briefly, but he is definitely making efforts. It's a little startling for me to see a baby the size of a 3-month-old sitting up by himself. He and Kinley can join the circus together. I'm really proud of him.
Thursday, August 13, 2009
Clarification
Because of a something someone said to me, I started to wonder if I was unclear in one of my recent posts. That happens sometimes.
When I said "it took a lot of convincing, but I see the need..." I meant (and have now edited) that it took a lot of convincing from my pediatrician. I didn't convince him that Crew needed more intervention; he strong-armed me.
It just goes against my nature to freak out and interfere with Crew's development when I'm not 100% convinced that he is officially "behind". I know for a fact that he's not very behind and if he was, I would be the first one in line sounding the alarms. I've been more of the attitude that he's gentle and mellow and taking his time. So he's not at the front of the charts for his milestones; so what?
My confidence in diagnoses and prognoses was completely shattered by our NICU experience and so many of the insane, unnecessary interventions they tried to pull off, particularly by our OT at Primary's. I never got around to documenting the insanity with that crazy woman, but she has scarred my opinion of occupational therapy pretty irreparably. I now take all opinions with a gigantic bucket of salt and have major trust issues with those that are supposed to help us. I trust our pediatrician a lot more than anyone else, so I'll listen to him... for now, LOL! :)
My experience in the NICU has probably driven me to the opposite extreme, but I endured so many overreactions and misplaced, conflicting reports during those 94 days that I just have no tolerance for that kind of drama now. When some stranger spies an area of mild, potential concern with Crew, my first inclination is to do an internal eye roll and a silent sigh.
And don't even get me started on "specialists". My Primary's OT was an "eating specialist" that wanted to put Crew under general anesthesia and shove a camera down his trachea to investigate this mysterious "stridor" or "wheezing noise" that he did when he ate. You know, the kind of gentle wheezing/grunting that almost all babies do when they eat? I had to raise unholy hell to put a stop to that one, just in the nick of time. Just one of dozens of frustrating events that still raise my hackles when I think about them.
I'm trying to find the proper balance as we negotiate these waters. I (obviously) won't overreact to Crew's nontraditional development, but I don't want to underreact either. I want him to have exactly what he truly needs and I'm willing to go to the moon to get it, but I simply don't have it within me to hang my fears or my peace on the authority of the Hawaii Early Learning Profile. Let's just see how this plays out before we get our panties into a knot, shall we?
When I said "it took a lot of convincing, but I see the need..." I meant (and have now edited) that it took a lot of convincing from my pediatrician. I didn't convince him that Crew needed more intervention; he strong-armed me.
It just goes against my nature to freak out and interfere with Crew's development when I'm not 100% convinced that he is officially "behind". I know for a fact that he's not very behind and if he was, I would be the first one in line sounding the alarms. I've been more of the attitude that he's gentle and mellow and taking his time. So he's not at the front of the charts for his milestones; so what?
My confidence in diagnoses and prognoses was completely shattered by our NICU experience and so many of the insane, unnecessary interventions they tried to pull off, particularly by our OT at Primary's. I never got around to documenting the insanity with that crazy woman, but she has scarred my opinion of occupational therapy pretty irreparably. I now take all opinions with a gigantic bucket of salt and have major trust issues with those that are supposed to help us. I trust our pediatrician a lot more than anyone else, so I'll listen to him... for now, LOL! :)
My experience in the NICU has probably driven me to the opposite extreme, but I endured so many overreactions and misplaced, conflicting reports during those 94 days that I just have no tolerance for that kind of drama now. When some stranger spies an area of mild, potential concern with Crew, my first inclination is to do an internal eye roll and a silent sigh.
And don't even get me started on "specialists". My Primary's OT was an "eating specialist" that wanted to put Crew under general anesthesia and shove a camera down his trachea to investigate this mysterious "stridor" or "wheezing noise" that he did when he ate. You know, the kind of gentle wheezing/grunting that almost all babies do when they eat? I had to raise unholy hell to put a stop to that one, just in the nick of time. Just one of dozens of frustrating events that still raise my hackles when I think about them.
I'm trying to find the proper balance as we negotiate these waters. I (obviously) won't overreact to Crew's nontraditional development, but I don't want to underreact either. I want him to have exactly what he truly needs and I'm willing to go to the moon to get it, but I simply don't have it within me to hang my fears or my peace on the authority of the Hawaii Early Learning Profile. Let's just see how this plays out before we get our panties into a knot, shall we?
Therapy
Well, we've been doing our physical therapy, as we pinky-promised our pediatrician that we would. After 4 sessions, Crew appears to be thinking about maybe making some small efforts toward sitting up. Basically, he doesn't collapse in half, burying his face in his feet 100% of the time. More like... 85% of the time. It really is helpful to have one of the kids stand over my shoulder to encourage him to look up and try to hold himself up a little. My face apparently isn't exciting enough.
He remains slow to grab at items, but once he gets it into his hot little mitt, he almost always brings it right to his mouth, which is a good thing. I can't be positive, but I wonder sometimes if he favors his right hand/arm. Justin doesn't necessarily think so, but we're watching it and encouraging him to use both hands until such time as it becomes normal and appropriate for him to favor one hand over another.
He rolls onto his side all the time and every once in a while comes close to rolling all the way onto his belly. He manages to flip himself over often enough from his belly to his back.
He remains slow to grab at items, but once he gets it into his hot little mitt, he almost always brings it right to his mouth, which is a good thing. I can't be positive, but I wonder sometimes if he favors his right hand/arm. Justin doesn't necessarily think so, but we're watching it and encouraging him to use both hands until such time as it becomes normal and appropriate for him to favor one hand over another.
He rolls onto his side all the time and every once in a while comes close to rolling all the way onto his belly. He manages to flip himself over often enough from his belly to his back.
My Helpful Supergirl
Kinley is 39 pounds. Crew is 13 pounds. Kinley doesn't seem to realize or care that Crew is exactly 1/3 of her weight. That's like me hauling around someone who is... ahem... 1/3 my weight! She packs him up and down the stairs and all around the house like a big, fat teddy bear. He absolutely adores her. He knows and loves his siblings very much. During therapy sessions, I find it very helpful to have one of them standing behind my shoulder because he'd rather look at them than at any toy we own. He'll try harder to sit up if he knows he'll get an eyeful of Kinley or Tanner for his effort.
Wednesday, August 12, 2009
Cerebral Palsy
Cerebral Palsy has been thrown around as a possibility from "day of life 1", as they call it in the NICU. We meet with a neurologist from time to time to assess Crew's progress. Several weeks ago we met with our neurologist and got a "so far, so good, but it's too early to declare victory". The usual. At this stage, it's impossible to tell to what degree, if any, someone may suffer from cerebral palsy, though there are often early indicators if it's going to be catastrophically problematic. As of now, she sees nothing to indicate a serious level of cerebral palsy and if she had to guess, if he does present with cerebral palsy, it would likely manifest itself as clumsiness and/or questionable dexterity.
Nevertheless, I thought it would be beneficial for my organizational needs to finally put all of my research on risk factors into one place. If nothing else, to prove that I'm not ignorant of them, LOL!
At one time this information was daunting, and I've withheld it to this point because it felt so melodramatic to post it. But, you're big girls and boys and won't read too much into it, I'm sure. Promise to refrain from freaking out?
Top Risk Factors for Cerebral Palsy
Any one of the following circumstances raises a child's risk factors by quite a bit:
1. Being a twin -- check
2. Being an identical twin -- check
3. Suffering from TTTS -- check
4. Having the sibling twin die while still in the womb -- check
5. Having a twin die as a result of TTTS, inside of the womb or out -- check
6. Being born less than 30 weeks -- Crew was 28, or 26 depending on who you ask.
7. Weighing less than 1500 grams at birth -- Crew was 684 -- "Infants born with a very low birthrate (i.e. under 3 pounds 5 ounces, or 1500 grams) have a 25 times more likely chance of acquiring cerebral palsy."
8. Having newborn seizures -- check
9. Having a low Apgar score -- Crew scored a 1 at birth, a 6 after 15 minutes
10. Being born without a heartbeat -- check
11. Having surgery/general anesthetic as a newborn -- Crew had 4 before he was considered "newborn age".
12. Having any kind of interruption in growth outside of the womb -- check
13. Having any kind of nutritional absorption issues early on -- check
14. Intrauterine growth retardation -- check, Crew was the donor twin and measured far too small and undeveloped for his age
15. Complications of labor and delivery -- check
16. Having a brain bleed, particularly a grade 3 or 4 -- Crew had a grade 1 or 2, possibly a 3, but doubtful
17. Babies who need to breathe with a ventilator for more than 4 weeks -- check
I'm not oblivious to the possibilities and risk factors here, but I'm also not surprised when his evaluations come back mystifyingly positive and reassuring. "It should be noted that these are risk factors, and not determinants, of cerebral palsy." I think there is a fine line between being proactive and overreactive. If I became a nutcase about every possibility that was thrown at me during our NICU adventure, they would have had to lock me in a padded cell very early on. He was going to be a "vegetable", you may remember. A few times they were just sure he was going to die. I did become highly concerned over a number of those things and it was all part of the roller coaster that I jumped off of 6 months ago.
Nevertheless, we have done two of our little 30-minute "formal therapy sessions" and... it was actually really fun. I agree that if he does have any degree of Cerebral Palsy that we want to be ahead of it and not behind it.
So, our tiny miracle continues to beat the odds and we will continue to watch him closely to help him be the strong little tiger that we know he is. Needing extra assistance in no way makes him less of a miracle to us. We've known that all along, but have gotten careless and lax with his plentiful successes. He has spoiled us with how "normal" he is with so many things that we have started to take his progress for granted.
I love this little guy. But he needs a bath right now...
Nevertheless, I thought it would be beneficial for my organizational needs to finally put all of my research on risk factors into one place. If nothing else, to prove that I'm not ignorant of them, LOL!
At one time this information was daunting, and I've withheld it to this point because it felt so melodramatic to post it. But, you're big girls and boys and won't read too much into it, I'm sure. Promise to refrain from freaking out?
Top Risk Factors for Cerebral Palsy
Any one of the following circumstances raises a child's risk factors by quite a bit:
1. Being a twin -- check
2. Being an identical twin -- check
3. Suffering from TTTS -- check
4. Having the sibling twin die while still in the womb -- check
5. Having a twin die as a result of TTTS, inside of the womb or out -- check
6. Being born less than 30 weeks -- Crew was 28, or 26 depending on who you ask.
7. Weighing less than 1500 grams at birth -- Crew was 684 -- "Infants born with a very low birthrate (i.e. under 3 pounds 5 ounces, or 1500 grams) have a 25 times more likely chance of acquiring cerebral palsy."
8. Having newborn seizures -- check
9. Having a low Apgar score -- Crew scored a 1 at birth, a 6 after 15 minutes
10. Being born without a heartbeat -- check
11. Having surgery/general anesthetic as a newborn -- Crew had 4 before he was considered "newborn age".
12. Having any kind of interruption in growth outside of the womb -- check
13. Having any kind of nutritional absorption issues early on -- check
14. Intrauterine growth retardation -- check, Crew was the donor twin and measured far too small and undeveloped for his age
15. Complications of labor and delivery -- check
16. Having a brain bleed, particularly a grade 3 or 4 -- Crew had a grade 1 or 2, possibly a 3, but doubtful
17. Babies who need to breathe with a ventilator for more than 4 weeks -- check
I'm not oblivious to the possibilities and risk factors here, but I'm also not surprised when his evaluations come back mystifyingly positive and reassuring. "It should be noted that these are risk factors, and not determinants, of cerebral palsy." I think there is a fine line between being proactive and overreactive. If I became a nutcase about every possibility that was thrown at me during our NICU adventure, they would have had to lock me in a padded cell very early on. He was going to be a "vegetable", you may remember. A few times they were just sure he was going to die. I did become highly concerned over a number of those things and it was all part of the roller coaster that I jumped off of 6 months ago.
Nevertheless, we have done two of our little 30-minute "formal therapy sessions" and... it was actually really fun. I agree that if he does have any degree of Cerebral Palsy that we want to be ahead of it and not behind it.
So, our tiny miracle continues to beat the odds and we will continue to watch him closely to help him be the strong little tiger that we know he is. Needing extra assistance in no way makes him less of a miracle to us. We've known that all along, but have gotten careless and lax with his plentiful successes. He has spoiled us with how "normal" he is with so many things that we have started to take his progress for granted.
I love this little guy. But he needs a bath right now...
Tuesday, August 11, 2009
The "N" Word
Crew had two doctor visits this morning. One was to the eye doctor. Beyond all expectations, we received a clean bill of health from Dr. Larsen on Crew's little peepers. So clean, in fact, that we are no longer considered active patients. Done. See ya. Ba-bye. 'Don't let the door hit you' and all that. Crew's eye development is now "normal", as if he never had ROP and had been born full term. I told him that we just love the "N" word.
In other good news, we visited the pediatrician and got great news on Crew's weight and height. He is 13 pounds, 4 ounces, which is actually a spike in the charts. He has made the exact same spike with his height and head circumference. We haven't had him weighed in more than 2 months and I was feeling like he might be plateauing in his weight gain. He is still in 0-3 month clothes, after all... Imagine my surprise and delight to know that he has finally hit the charts. He is officially in the 5th percentile for his adjusted age of 6 months! Yay, little fatty!
That was the good news. I don't have any really bad news, but I do have a bit of chagrin and conflict of heart.
I am very protective of Crew (like I need to tell you that). And in general I don't get all that worked up about milestones with my kids. Kinley was quite late in her gross motor skills, but was an early talker. Tanner was a late talker but his gross motor skills followed a more average time table. That being said, Crew is a different story and remains at high risk for delays, etc. and we've had to be more concerned about his progress; nevertheless, I still find myself resisting getting all worked up over the fact that he isn't sitting up yet or doing a few other things "normal" 6 month old babies are "supposed" to be doing. I find myself defending his right to take his time.
It's a hard balance for me to strike because I want to help him all that I can, not be in denial, nor neglect his needs, but I have a hard time forcing him before he's ready because, generally speaking, this stuff just isn't that important to me unless it's a really big delay. When people start freaking out about how tense his muscle tone is, all I think is "yeah, he has high muscle tone... just like his brother and sister did." In most cases, babies will cross their bridges when they feel like it. It's difficult for me to admit that Crew is not most cases, because that feels like a huge overreaction to his "delays". I hate it when people overreact to Crew's complexity. No, I am not in denial of his risk factors nor am I afraid of the possibilities, but can we all just calm down and stop seeing boogeyman shadows under the bed?
That brings me to the chagrin. We are now entering a critical stage of Crew's development, where we are requiring more of him. He's starting to fall "behind". It took a lot of convincing from our pediatrician, but I can see that Crew needs more intervention than I'm currently giving him. We play a lot and get a lot of high-fives from our OT on his overall progress, but I'm not "working" actively with him regularly and it's starting to show in the details. Crew and I will now be entering a phase of more intense physical therapy, 30 minutes a day of Mommy/Crew time. Less play, more therapy. I'm conflicted, but resigned. I can see the need and Justin's been singing this song for months, but you know how I feel about being a slave to the development charts and this feels a little like that.
In other good news, we visited the pediatrician and got great news on Crew's weight and height. He is 13 pounds, 4 ounces, which is actually a spike in the charts. He has made the exact same spike with his height and head circumference. We haven't had him weighed in more than 2 months and I was feeling like he might be plateauing in his weight gain. He is still in 0-3 month clothes, after all... Imagine my surprise and delight to know that he has finally hit the charts. He is officially in the 5th percentile for his adjusted age of 6 months! Yay, little fatty!
That was the good news. I don't have any really bad news, but I do have a bit of chagrin and conflict of heart.
I am very protective of Crew (like I need to tell you that). And in general I don't get all that worked up about milestones with my kids. Kinley was quite late in her gross motor skills, but was an early talker. Tanner was a late talker but his gross motor skills followed a more average time table. That being said, Crew is a different story and remains at high risk for delays, etc. and we've had to be more concerned about his progress; nevertheless, I still find myself resisting getting all worked up over the fact that he isn't sitting up yet or doing a few other things "normal" 6 month old babies are "supposed" to be doing. I find myself defending his right to take his time.
It's a hard balance for me to strike because I want to help him all that I can, not be in denial, nor neglect his needs, but I have a hard time forcing him before he's ready because, generally speaking, this stuff just isn't that important to me unless it's a really big delay. When people start freaking out about how tense his muscle tone is, all I think is "yeah, he has high muscle tone... just like his brother and sister did." In most cases, babies will cross their bridges when they feel like it. It's difficult for me to admit that Crew is not most cases, because that feels like a huge overreaction to his "delays". I hate it when people overreact to Crew's complexity. No, I am not in denial of his risk factors nor am I afraid of the possibilities, but can we all just calm down and stop seeing boogeyman shadows under the bed?
That brings me to the chagrin. We are now entering a critical stage of Crew's development, where we are requiring more of him. He's starting to fall "behind". It took a lot of convincing from our pediatrician, but I can see that Crew needs more intervention than I'm currently giving him. We play a lot and get a lot of high-fives from our OT on his overall progress, but I'm not "working" actively with him regularly and it's starting to show in the details. Crew and I will now be entering a phase of more intense physical therapy, 30 minutes a day of Mommy/Crew time. Less play, more therapy. I'm conflicted, but resigned. I can see the need and Justin's been singing this song for months, but you know how I feel about being a slave to the development charts and this feels a little like that.
Lesson Learned
Note to self: Don't ever ever do a bum-sniff-check with a mouth full of yogurt and granola...
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