Friday, April 27
Thursday, April 26
Short and sweet
Iris hasn't used her g-tube since Monday night. And on Monday, she used it only once.
This means that in four weeks Iris went from taking absolutely nothing by mouth to being able to maintain her nutritional needs--and then some--entirely by mouth.
Our last day at the intensive feeding clinic is next Friday and both T and are mystified and just sort of dumbfounded at the success of it all.
Iris now eats.
This means that in four weeks Iris went from taking absolutely nothing by mouth to being able to maintain her nutritional needs--and then some--entirely by mouth.
Our last day at the intensive feeding clinic is next Friday and both T and are mystified and just sort of dumbfounded at the success of it all.
Iris now eats.
Thursday, April 19
Eating is grrrr-reat
Some people have asked what our days are like at the feeding clinic and so I thought I would share what looks like:
5:30am-7:45am
This timeslot has remained remarkably frozen in time as it did pre-clinic. It still involves running around in underwear asking for a snack (Ezra), shouting from bed that she is awake and needing attention (Iris), trying to help hair look less hoopty (me) and randomly announcing that he can't be late for Very Important Meetings (T).
7:45am-8:30am
T speedracers to work or somewhere and I take Ezra to school, grab a coffee and then take Iris to the feeding clinic. Twice a week she is weighed so we have to be there earlier.
8:45am-8:30am
She plays with the toys in the common area and I do some chatting with the other parents/grandparents.
8:45am-9:15am
Iris has her first feeding session. We were observing from a separate room the first three weeks but now I or T (we split the days of the week we're at the clinic with her) are in there with her and learning the intricacies of feeding her with the new tools and techniques they've cemented with Iris.
9:15am-10:45am
Iris plays in the common area and we'll do usually any number of things: stickers, make a craft, open Play-Doh, read books, play with the Little People or in the play kitchen, etc. They have some great toys and Iris never seems bored. In fact, she seems quite...busy. With tasks unknown to anyone but her.
10:45am-11:30am
It tends to get a bit rowdy in the common area and I have a hard time handling the ruckus, so we'll usually get out and run an errand before her next feeding session starts.
Once a week I have a meeting with the program director (who is a psychologist with a background in pediatric feeding disorders) to talk about Iris and how we and she are doing.
11:45am-12:15pm
Second feeding session. By this time, Iris is getting droopy and earlier in the program would actually start to fall asleep in the chair.
12:15pm-12:25pm
Race home with the windows open in the car and the radio on to keep Iris awake.
Once a week we nap in the room we've been assigned to at the clinic as I take a class on how to prepare the recipes that they feed Iris in each session. Part of the treatment plan is to have these foods prepared in the same way at home as they are in the clinic so that she is used to and comfortable with the textures. There are about 30 or so recipes the registered dietician has balanced out every aspect of.
12:30pm-2:00pm
The other four days of the week week during this time, she sleeps and I eat lunch and putz around opening mail, doing laundry, returning phone calls, checking work email, watching "Shahs of Sunset."
2:00pm-2:45pm
Head back to the clinic (it's five miles or so from our house) and play until the last session of the day.
Once a week we have a "team" meeting with the clinic director, the medical doctor, the nurse practitioner, the dietician and her three speech-language pathologists. We talk about her overall progress and any behaviors while at the table and then the next steps in the plan.
2:45pm-3:15pm
Third and last session of the day. At the end of that session, we're given our instructions for the evening and what, if anything, to do at home with her.
3:15pm-4:30pm
Run any other errands. If anything, I've found that my time as a mother is broken up into equal thirds of: 33.3% Feeding people / 33.3% Cleaning the clothes the people wear / 33.3% Running errands to get the people things.
We were picking Ezra up at school right at 3:30pm, but it was throwing him off his game and pre-empting his playground time. Something that: a) we were hearing whiiiining about (oh my LORD THE WHINING MAKE IT STOP) and b) was storing the energy only to have it come out at 6:05pm which is already a time that I'm ready to hide under the dining room table and eat Oreos.
So yeah. We let him play at school.
And then there is the magical hours of 4:30pm-7:30pm which is still chock full of making the food and hearing the moaning about the food and eating the food and then washing the food off the faces and the clothes.
Good times.
5:30am-7:45am
This timeslot has remained remarkably frozen in time as it did pre-clinic. It still involves running around in underwear asking for a snack (Ezra), shouting from bed that she is awake and needing attention (Iris), trying to help hair look less hoopty (me) and randomly announcing that he can't be late for Very Important Meetings (T).
7:45am-8:30am
T speedracers to work or somewhere and I take Ezra to school, grab a coffee and then take Iris to the feeding clinic. Twice a week she is weighed so we have to be there earlier.
8:45am-8:30am
She plays with the toys in the common area and I do some chatting with the other parents/grandparents.
8:45am-9:15am
Iris has her first feeding session. We were observing from a separate room the first three weeks but now I or T (we split the days of the week we're at the clinic with her) are in there with her and learning the intricacies of feeding her with the new tools and techniques they've cemented with Iris.
9:15am-10:45am
Iris plays in the common area and we'll do usually any number of things: stickers, make a craft, open Play-Doh, read books, play with the Little People or in the play kitchen, etc. They have some great toys and Iris never seems bored. In fact, she seems quite...busy. With tasks unknown to anyone but her.
10:45am-11:30am
It tends to get a bit rowdy in the common area and I have a hard time handling the ruckus, so we'll usually get out and run an errand before her next feeding session starts.
Once a week I have a meeting with the program director (who is a psychologist with a background in pediatric feeding disorders) to talk about Iris and how we and she are doing.
11:45am-12:15pm
Second feeding session. By this time, Iris is getting droopy and earlier in the program would actually start to fall asleep in the chair.
12:15pm-12:25pm
Race home with the windows open in the car and the radio on to keep Iris awake.
Once a week we nap in the room we've been assigned to at the clinic as I take a class on how to prepare the recipes that they feed Iris in each session. Part of the treatment plan is to have these foods prepared in the same way at home as they are in the clinic so that she is used to and comfortable with the textures. There are about 30 or so recipes the registered dietician has balanced out every aspect of.
12:30pm-2:00pm
The other four days of the week week during this time, she sleeps and I eat lunch and putz around opening mail, doing laundry, returning phone calls, checking work email, watching "Shahs of Sunset."
2:00pm-2:45pm
Head back to the clinic (it's five miles or so from our house) and play until the last session of the day.
Once a week we have a "team" meeting with the clinic director, the medical doctor, the nurse practitioner, the dietician and her three speech-language pathologists. We talk about her overall progress and any behaviors while at the table and then the next steps in the plan.
2:45pm-3:15pm
Third and last session of the day. At the end of that session, we're given our instructions for the evening and what, if anything, to do at home with her.
3:15pm-4:30pm
Run any other errands. If anything, I've found that my time as a mother is broken up into equal thirds of: 33.3% Feeding people / 33.3% Cleaning the clothes the people wear / 33.3% Running errands to get the people things.
We were picking Ezra up at school right at 3:30pm, but it was throwing him off his game and pre-empting his playground time. Something that: a) we were hearing whiiiining about (oh my LORD THE WHINING MAKE IT STOP) and b) was storing the energy only to have it come out at 6:05pm which is already a time that I'm ready to hide under the dining room table and eat Oreos.
So yeah. We let him play at school.
And then there is the magical hours of 4:30pm-7:30pm which is still chock full of making the food and hearing the moaning about the food and eating the food and then washing the food off the faces and the clothes.
Good times.
Saturday, April 14
Because she has surprised all of her doctors
My water broke at 21 weeks and at 23 weeks and 5 days, due to a baby foot becoming lodged in my cervix, I delivered twin babies via emergency c-section.
Noah passed away within minutes of being delivered.
Iris spent 183 days in the hospital.
The survival rate for infants born at 23 weeks is estimated to be around 50%, and, frankly; neither T nor I nor very many of her physicians thought Iris would survive the first few days.
Her heart was abnormal. Her lungs were underdeveloped. Her intestines were malrotated and eventually perforated. She had ROP. She developed hydronephrosis. She later had an inguinal hernia, a Nissen and a g-tube. She was one pound seven ounces at birth.
Noah passed away within minutes of being delivered.
Iris spent 183 days in the hospital.
The survival rate for infants born at 23 weeks is estimated to be around 50%, and, frankly; neither T nor I nor very many of her physicians thought Iris would survive the first few days.
Her heart was abnormal. Her lungs were underdeveloped. Her intestines were malrotated and eventually perforated. She had ROP. She developed hydronephrosis. She later had an inguinal hernia, a Nissen and a g-tube. She was one pound seven ounces at birth.
On April 28 I will be walking in our local March of Dimes walk. The March of Dimes played a significant role in getting Iris and T and I through it all. Programming, drug research and development, community support--it all made a difference. If you would like to support the March of Dimes, I've posted a badge to the left.
It has been your support, though, that has really uplifted me these last two and a half years. Your kind hearts and touching words mean more than I can really ever tell you here or face-to-face. Thank you.
It has been your support, though, that has really uplifted me these last two and a half years. Your kind hearts and touching words mean more than I can really ever tell you here or face-to-face. Thank you.
Friday, April 13
Love/hate Friday
Love: Reading your Awesome Life Moments. Red Door sent me an exceptionally dirty one that was pretty damn awesome as well.
Hate: I sooooo want to share it but won't.
Love: Iris has new sentences! "Come on, (guys, Mama, Papa)!" complete with hand motions to follow her. And she has been saying, "Is tute." for "it's cute" when she sees a puppy or a cat.
Hate: Okay I can't really think of any other examples right now, but both T and I are loving how much she has to say.
Love: She is also a climber as her new thing is to sit on one side of our breakfast nook table (it has bench seats) and then, when our backs are turned, climb ACROSS the table on over to the other side to be next to her brother. Back turned? Climb back over to return.
Hate: I have had a persistent headache the last few days.
Love: I slept like a motherscratching dead woman last night. Felt great.
Hate: I have some house things to do this weekend and I just don't want to do them at all. Not a lot of energy lately for that kind of thing.
Love: It's supposed to rain all weekend, so it'll make getting those things done a bit easier. And maybe we will go swimming inside. And I'll make some new dinners. And I've been wanting to take Ezra to this inside bounce/gym place.
Hate: I promised T "no plans," but if these are off the books it doesn't really count, right?
Love: New clothes
Hate: Green peppers
Love: Fabulous news from good friends
Hate: Oh my goodness it is now only 11:10am
What are you loving and hating?
Hate: I sooooo want to share it but won't.
Love: Iris has new sentences! "Come on, (guys, Mama, Papa)!" complete with hand motions to follow her. And she has been saying, "Is tute." for "it's cute" when she sees a puppy or a cat.
Hate: Okay I can't really think of any other examples right now, but both T and I are loving how much she has to say.
Love: She is also a climber as her new thing is to sit on one side of our breakfast nook table (it has bench seats) and then, when our backs are turned, climb ACROSS the table on over to the other side to be next to her brother. Back turned? Climb back over to return.
Hate: I have had a persistent headache the last few days.
Love: I slept like a motherscratching dead woman last night. Felt great.
Hate: I have some house things to do this weekend and I just don't want to do them at all. Not a lot of energy lately for that kind of thing.
Love: It's supposed to rain all weekend, so it'll make getting those things done a bit easier. And maybe we will go swimming inside. And I'll make some new dinners. And I've been wanting to take Ezra to this inside bounce/gym place.
Hate: I promised T "no plans," but if these are off the books it doesn't really count, right?
Love: New clothes
Hate: Green peppers
Love: Fabulous news from good friends
Hate: Oh my goodness it is now only 11:10am
What are you loving and hating?
Thursday, April 12
Awesome Life Moments
So sometimes in life there is A Moment. A Moment when the Earth's rotation halts and you think, "WHAT THE EFF HAVE I JUST WITNESSED?!"
Oh, you know. Because chances are you have had such a moment.
Just watched a man standing inside the entrance of the grocery store tear into a mango with his bare hands like a goddamn savage. Holy shit.
— Biz (@That_Biz) March 30, 2012
I can't even believe that just happened. He was like a fucking chimp or something. This isn't the rainforest buddy!
— Biz (@That_Biz) March 30, 2012
I have had my own such moments.
Like the time I was waiting for a prescription to be filled at the grocery store and I looked up and I saw walking towards me...a man wearing a cowboy hat and a tiny denim jacket, almost a bolero, and full-on skinny corduroys. I don't even know.
Or another time at the grocery store (what is up with this grocery store?...) when I stumbled upon a guy doing the "Roller Coaster!" hand motions along with the Muzak in the aisle while I happened to also be singing along. Our eyes met. We both looked away. It was pretty awesome.
And then the penultimate of best things I've ever witnessed ever in my 36 years of life.
The time I was in the car with my friend A going to lunch and there, on the sidewalk, I saw:
A rather large man
Shirtless
Using a walker
And walking a cat
On a leash
I'm telling you--it doesn't even get better than that.
Wednesday, April 11
A tidbit real quick-like
So.
Iris is eating and drinking so much by mouth in each of her three feeding sessions at the clinic that her tube feedings that immediately follow each of those three sessions? Not needed. She is getting that volume by mouth, like most people.
Folks, it's happening!
Iris is eating and drinking so much by mouth in each of her three feeding sessions at the clinic that her tube feedings that immediately follow each of those three sessions? Not needed. She is getting that volume by mouth, like most people.
Folks, it's happening!
Sunday, April 8
Eastery good times
"
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| She kept shouting, "EGG!" |
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| Gingerly using his new garden tools to scoop the eggs. |
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| Reading the new George book from her basket. |
Sunglasses courtesy of Jessica. We cracked them out awhile ago, but they got some heavy play this morning.
Friday, April 6
Not my story
I have hesitated to share this because it is so very personal and not my story to tell, but I have decided it's important to share.
The five other children in the feeding program with Iris are there for various reasons, and it's been interesting to gently and slowly find out the history of the feeding issues--as often (as it was with Iris) it is tied to a greater physical/health issue.
There is one little girl, C, who is four years old and there with her grandma. I thought perhaps C had cerebral palsy. She uses braces on her legs and one side of her body is weaker physically along with a host of other challenges such as having a g-tube. Her grandmother is her legal guardian.
C gives hugs freely, is taller than any other four year old I've seen, sits next to Iris to watch Caillou and color, and is fascinated with smart phones and their ability to take pictures.
C does not have cerebral palsy. C has the challenges she has because as a two month old infant her father threw her on the hardwood floor of their home.
Her grandmother shared the aftermath of that experience and I cried.
I have a strong faith and belief in God but is it hard for me to understand why this happens to the innocent. A little girl, who would not struggle the way she is currently struggling if it were not for that man.
April is National Child Abuse Prevention Month and, if nothing else, think of C and her grandma.
The five other children in the feeding program with Iris are there for various reasons, and it's been interesting to gently and slowly find out the history of the feeding issues--as often (as it was with Iris) it is tied to a greater physical/health issue.
There is one little girl, C, who is four years old and there with her grandma. I thought perhaps C had cerebral palsy. She uses braces on her legs and one side of her body is weaker physically along with a host of other challenges such as having a g-tube. Her grandmother is her legal guardian.
C gives hugs freely, is taller than any other four year old I've seen, sits next to Iris to watch Caillou and color, and is fascinated with smart phones and their ability to take pictures.
C does not have cerebral palsy. C has the challenges she has because as a two month old infant her father threw her on the hardwood floor of their home.
Her grandmother shared the aftermath of that experience and I cried.
I have a strong faith and belief in God but is it hard for me to understand why this happens to the innocent. A little girl, who would not struggle the way she is currently struggling if it were not for that man.
April is National Child Abuse Prevention Month and, if nothing else, think of C and her grandma.
Thursday, April 5
Updates! Or, I feel overwhelmed!
I've decided that hormones can kiss my grits. Other than making sure I don't get a man 'stache on the regular nor grow man bits, I'm not sure I have a whole lot of use for them at the present time.
I get stabby and shouty. I eat lots of things that make my pants pinchy. Maybe I cry a little bit. There is more shouty and angry eyebrows. Guilt following. More guilt. Some sleeping.
I'm rolling my eyes after just re-reading that paragraph because is there ANYTHING REMOTELY APPEALING ABOUT ANY OF THAT? No. No, there is not. Suck.
So that was the last week or so and I...just yuck. I think what makes it worse is that the feeling of being overwhelmed rather compounded things. Starting Iris' feeding program, feeling behind at work, having T get stressed because he is also behind at work, trying to stay on top of other whatnot--it has all just felt like too much and I'm afraid I've not handled it very well at home. Too short with everyone. Thumbs down.
Randomly, does anyone remember that song from Too Short? "I wish I was a little bit taller, I wish I was a baller, I wish I had a girl who looked good, I would call her." Who doesn't want things, T. Short? You're onto something there. The simple things in life.
At any rate, I probably need to apologize to T and take some deep cleansing breaths and push through the guilt about how impatient I've been with Ezra.
What else...
Iris is rocking steady at the feeding clinic. I tell you what. The big news is that every day brings new progress. EVERY. DAY. It's incremental, folks, but it is progress forward and this is rather unusual as most kids have steps back initially due to acceptance of new therapists and new treatment protocol. Not Iris. With a cocked eyebrow, she told them to bring it.
The biggest thing is that they have started giving her thickened milk (her usual Pediasure) via a squeeze bottle and straw for her to drink. It's thickened because thinner liquids are slippery and fast and hard to manage in unpracticed mouths and throats. It's her Pediasure because it has umpteen more calories than cow's milk and, allegedly, tastes like vanilla. It's in a squeeze bottle so that the therapists can control the flow and amount she's being given.
All of this is huge and magnificent and if you're at home scratching your heads because it seems weird and small and not monumental--well, I don't fault you for that. At all. Feedings issues are odd and problematic and hard to understand if it's not under your roof non-stop. I'm not sure I could fully understand having a child who is autistic or has Down's Syndrome. It's just almost impossible to get there if you're not already there.
Conclusion: things are on the upswing and I am down with that.
Lastly, I give you an oldy but a goody of a picture from a few weeks after Iris initially came home from the hospital. Check out that face, folks. This is a girl who does not dick around. Ever.
I get stabby and shouty. I eat lots of things that make my pants pinchy. Maybe I cry a little bit. There is more shouty and angry eyebrows. Guilt following. More guilt. Some sleeping.
I'm rolling my eyes after just re-reading that paragraph because is there ANYTHING REMOTELY APPEALING ABOUT ANY OF THAT? No. No, there is not. Suck.
So that was the last week or so and I...just yuck. I think what makes it worse is that the feeling of being overwhelmed rather compounded things. Starting Iris' feeding program, feeling behind at work, having T get stressed because he is also behind at work, trying to stay on top of other whatnot--it has all just felt like too much and I'm afraid I've not handled it very well at home. Too short with everyone. Thumbs down.
Randomly, does anyone remember that song from Too Short? "I wish I was a little bit taller, I wish I was a baller, I wish I had a girl who looked good, I would call her." Who doesn't want things, T. Short? You're onto something there. The simple things in life.
At any rate, I probably need to apologize to T and take some deep cleansing breaths and push through the guilt about how impatient I've been with Ezra.
What else...
Iris is rocking steady at the feeding clinic. I tell you what. The big news is that every day brings new progress. EVERY. DAY. It's incremental, folks, but it is progress forward and this is rather unusual as most kids have steps back initially due to acceptance of new therapists and new treatment protocol. Not Iris. With a cocked eyebrow, she told them to bring it.
The biggest thing is that they have started giving her thickened milk (her usual Pediasure) via a squeeze bottle and straw for her to drink. It's thickened because thinner liquids are slippery and fast and hard to manage in unpracticed mouths and throats. It's her Pediasure because it has umpteen more calories than cow's milk and, allegedly, tastes like vanilla. It's in a squeeze bottle so that the therapists can control the flow and amount she's being given.
All of this is huge and magnificent and if you're at home scratching your heads because it seems weird and small and not monumental--well, I don't fault you for that. At all. Feedings issues are odd and problematic and hard to understand if it's not under your roof non-stop. I'm not sure I could fully understand having a child who is autistic or has Down's Syndrome. It's just almost impossible to get there if you're not already there.
Conclusion: things are on the upswing and I am down with that.
Lastly, I give you an oldy but a goody of a picture from a few weeks after Iris initially came home from the hospital. Check out that face, folks. This is a girl who does not dick around. Ever.
Sunday, April 1
Shenanigans
Turns out chaise lounges aren't for lounging--instead maniacal laughter and rough housing.
We are so buying all new furniture once they leave the home.
We are so buying all new furniture once they leave the home.
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| That barrette didn't stand a chance. |
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