OK, so our Occupational Therapist might not be a baby whisperer, but she does work wonders. Last week she did her first official therapy session (previously, she came by to "get to know" Charlotte three times-- yeah, she's that awesome).
When our OT began the session, CA was crying at the very sight of her pacifier and by the end of it, Char-baby was taking it! This OT worked for an HOUR on just de-sensitizing Charlotte's mouth and cheeks. It's been pretty amazing seeing the difference. It's like these therapists know something, crazy, huh? I guess you do learn things in school after all :)
Caleb wants rice RIGHT NOW and if I stop writing this, I'll never come back to it, so I'm posting it as is. More updates are coming soon. I promise.
Monday, November 29, 2010
Sunday, November 28, 2010
Till We Meet Again
Little Gabriel Morales ended his fight against Spinal Muscular Atrophy on Thursday. That debilitating disease will never overpower his small body again.
May his family feel his presence in their lives until they can hold him in their arms again.
Funeral Services:
Tuesday 10:00 am-1:00 pm
New London Presbyterian Church
May his family feel his presence in their lives until they can hold him in their arms again.
Funeral Services:
Tuesday 10:00 am-1:00 pm
New London Presbyterian Church
1986 Newark Rd. (rte. 896)
New London, PA
Day 273
Charlotte Amalie-
Today celebrates nine months since your birth. 273 days of life.
The numbers tell us one story. In the past 273 days, you have spent 216 in the hospital. Those 216 days included heart surgery, chest tubes, abdominal surgery, eye surgeries, blood transfusions, sepsis, and more. The 57 days you've been home have been unbelievable. In those 57 days, you've had 18 appointments with a doctor and 14 therapy appointments. That leaves 25 days of just.being.home.
Your actions tell us another story. You've learned how to smile, how to bring your hands to your mouth, how to flatly refuse anything you don't want. {Let's be honest, you knew how to refuse things you didn't want from the very beginning.} You've learned how to blow raspberries and how to stick out you tongue (a very necessary skill for a little sister, I might add).
You're determined. You don't give up. You voice your opinion rather well for a little one without a voice. I'd say that you've developed a personality, but as any of the NICU nurses will testify, you've been this way since you were born. And despite your strong personality, you go with the flow. You're happy on the floor (on your playmat, we don't just throw you on the floor...), in the swing, or in your crib. You are learning to let us hold you. Previously, you thought that this was rather pointless.
We're so grateful for the past 273 days. We're grateful for the possibility of more. We're grateful for tonight, for tomorrow, for yesterday.
We're grateful you've taught us to appreciate each moment.
We're grateful for you.
Momma
Today celebrates nine months since your birth. 273 days of life.
The numbers tell us one story. In the past 273 days, you have spent 216 in the hospital. Those 216 days included heart surgery, chest tubes, abdominal surgery, eye surgeries, blood transfusions, sepsis, and more. The 57 days you've been home have been unbelievable. In those 57 days, you've had 18 appointments with a doctor and 14 therapy appointments. That leaves 25 days of just.being.home.
Your actions tell us another story. You've learned how to smile, how to bring your hands to your mouth, how to flatly refuse anything you don't want. {Let's be honest, you knew how to refuse things you didn't want from the very beginning.} You've learned how to blow raspberries and how to stick out you tongue (a very necessary skill for a little sister, I might add).
You're determined. You don't give up. You voice your opinion rather well for a little one without a voice. I'd say that you've developed a personality, but as any of the NICU nurses will testify, you've been this way since you were born. And despite your strong personality, you go with the flow. You're happy on the floor (on your playmat, we don't just throw you on the floor...), in the swing, or in your crib. You are learning to let us hold you. Previously, you thought that this was rather pointless.
We're so grateful for the past 273 days. We're grateful for the possibility of more. We're grateful for tonight, for tomorrow, for yesterday.
We're grateful you've taught us to appreciate each moment.
We're grateful for you.
Momma
Monday, November 22, 2010
More Updates
**Please check out our CHRISTMAS IN THE NICU page to see how you can be a part of our special present for families finding themselves spending Christmas day in the NICU. As always, thanks for all you do.**
Sigh.
It was one of those days.
In the past week, Charlotte has taken a grand total of 15 mL from the bottle. Total. In a week. Today at her therapy appointment, she wouldn't even take the chupi (pacifier). I'm losing it here, people. This was her one skill! We knew she could take a bottle, but the formula was just too thick. We had it in our heads that if we could just keep her going until she could take a thinner liquid, we'd be good to go.
Alas. It is not to be. Charlotte is currently refusing anything that comes near her mouth. Except for the Z-vibe. (I probably shouldn't write that down... tomorrow she'll refuse that as well!)
She's still taking a chupi when she's very sleepy, but its the last frontier. I know she's not going to be tube fed FOREVER, but it sure seems like it occasionally.
And thus ends my rant.
On a more positive note, the pulmonary team was very pleased to see Charlotte last week. They told us to not even think about weaning Charlotte at this time, which is disappointing, but it does take some pressure off of us. On the other hand, they were super happy with where she was and have continued her on all of her meds, with only an increase to her KCl. So yay for having something that's working!
That's about all folks!
Sigh.
It was one of those days.
In the past week, Charlotte has taken a grand total of 15 mL from the bottle. Total. In a week. Today at her therapy appointment, she wouldn't even take the chupi (pacifier). I'm losing it here, people. This was her one skill! We knew she could take a bottle, but the formula was just too thick. We had it in our heads that if we could just keep her going until she could take a thinner liquid, we'd be good to go.
Alas. It is not to be. Charlotte is currently refusing anything that comes near her mouth. Except for the Z-vibe. (I probably shouldn't write that down... tomorrow she'll refuse that as well!)
She's still taking a chupi when she's very sleepy, but its the last frontier. I know she's not going to be tube fed FOREVER, but it sure seems like it occasionally.
And thus ends my rant.
On a more positive note, the pulmonary team was very pleased to see Charlotte last week. They told us to not even think about weaning Charlotte at this time, which is disappointing, but it does take some pressure off of us. On the other hand, they were super happy with where she was and have continued her on all of her meds, with only an increase to her KCl. So yay for having something that's working!
That's about all folks!
My Latest Plan
Dear Blog Family-
I've been writing out my Christmas lists, and while I'm about 95% done with Christmas presents, there is one things that I'd really, really like to do this year.
I want to make baskets for the families who are in the NICU on Christmas. Obviously, not every family spending Christmas there will be celebrating Christmas, but it is the Holiday Season, and the stress involved with having a child in the NICU is pretty intense.
I'm asking you all to send me a greeting card (or two or three or ten) that I can put in a basket for NICU families. A card that says, hey, we know the NICU can be stressful, but there are people you don't even know thinking about you. A card that lets families know that others understand, that others are supporting them. A card that tells families they are not alone. I'd love to include pictures that your children have drawn, or notes to the families, or anything. These will be generic baskets, so it doesn't need to be anything specific, but I'd love to have a bunch of cards per basket, and I'll be making 15 baskets (so I'm hoping to get 45-60 cards).
Also, if you can include a gift card (restaurant, gas card, food, or cash) for a family, that would be wonderful. Nothing makes having your child in the NICU over a holiday "better" but it does help to know others are thinking of you. I know this time of year can be financially tight, so if a gift card is not possible, please, don't hesitate just sending a greeting card. I'm really excited about this and I'm even more excited to have you all involved.
Thanks so much!
Amanda
PS
I'll probably have an axe murderer come find my family, but oh well...
You can send the cards to:
529 Main Street
Parkesburg, PA 19365
Please don't stalk us, kidnap our children, or light our house on fire. (Our kids are high maintenance anyway).
PS again-
If you have sent a card or are going to send a card, please leave a comment or send me an email so I can make sure I have everyone's. Also, I promise to send you all a picture of the baskets you help create. Thanks so much!!
I've been writing out my Christmas lists, and while I'm about 95% done with Christmas presents, there is one things that I'd really, really like to do this year.
I want to make baskets for the families who are in the NICU on Christmas. Obviously, not every family spending Christmas there will be celebrating Christmas, but it is the Holiday Season, and the stress involved with having a child in the NICU is pretty intense.
I'm asking you all to send me a greeting card (or two or three or ten) that I can put in a basket for NICU families. A card that says, hey, we know the NICU can be stressful, but there are people you don't even know thinking about you. A card that lets families know that others understand, that others are supporting them. A card that tells families they are not alone. I'd love to include pictures that your children have drawn, or notes to the families, or anything. These will be generic baskets, so it doesn't need to be anything specific, but I'd love to have a bunch of cards per basket, and I'll be making 15 baskets (so I'm hoping to get 45-60 cards).
Also, if you can include a gift card (restaurant, gas card, food, or cash) for a family, that would be wonderful. Nothing makes having your child in the NICU over a holiday "better" but it does help to know others are thinking of you. I know this time of year can be financially tight, so if a gift card is not possible, please, don't hesitate just sending a greeting card. I'm really excited about this and I'm even more excited to have you all involved.
Thanks so much!
Amanda
PS
I'll probably have an axe murderer come find my family, but oh well...
You can send the cards to:
529 Main Street
Parkesburg, PA 19365
Please don't stalk us, kidnap our children, or light our house on fire. (Our kids are high maintenance anyway).
PS again-
If you have sent a card or are going to send a card, please leave a comment or send me an email so I can make sure I have everyone's. Also, I promise to send you all a picture of the baskets you help create. Thanks so much!!
Wednesday, November 17, 2010
The Face of Prematurity
The March of Dimes is an incredible organization. It has helped to provide funding and research, and has saved the lives of many, many babies. Did you know that prematurity is the number one killer of babies? The March of Dimes hopes that one day, all children will be born full term. I pray for that day as well.
However, there is one problem I have with the MoD. They lead you to believe, with their nice posters and pretty pictures, that this is the face of prematurity:
And it is, to an extent. But what you won't see, what many don't like to acknowledge, is that this, this is the real face of prematurity:
Too often we look at babies like Charlotte and believe that she is "prematurity".
Charlotte Amalie is the result of it. Prematurity is the 8 specialists she sees every other month. Prematurity is the three therapists she meets with once a week. Prematurity is the shots she gets every 4 weeks to avoid the common cold. Prematurity is the purell dispensers on my wall. Prematurity is missing Thanksgiving dinner or Christmas Eve parties with family and friends because there are too many germs.
Prematurity is recognizing that Charlotte is the outlier. She is doing remarkably well for a baby born 16 weeks early.
For so many others, prematurity means ventilators in their homes. It means a child who cannot speak, who cannot hear, who cannot walk. Prematurity means children who will never draw their parents a picture. It means children who will never be able to even hold a crayon. Prematurity is devastating.
Charlotte is a miracle. We are grateful everyday for her ever growing list of abilities. But for some, those abilities are not reality. When you pass those March of Dimes posters, please, feel inspired to give. Please donate to their cause. Their research, without question, saved our daughter's life.
But remember that the children pictured on the posters are not the face of prematurity. They are not the reality that many live with. As you read Charlotte's blog, keep in mind that she is what many parents would give anything to have.
So please, during this month of Prematurity Awareness, give to the March of Dimes. And remember. Remember what prematurity really is.
However, there is one problem I have with the MoD. They lead you to believe, with their nice posters and pretty pictures, that this is the face of prematurity:
And it is, to an extent. But what you won't see, what many don't like to acknowledge, is that this, this is the real face of prematurity:
Too often we look at babies like Charlotte and believe that she is "prematurity".
She's not.
Charlotte Amalie is the result of it. Prematurity is the 8 specialists she sees every other month. Prematurity is the three therapists she meets with once a week. Prematurity is the shots she gets every 4 weeks to avoid the common cold. Prematurity is the purell dispensers on my wall. Prematurity is missing Thanksgiving dinner or Christmas Eve parties with family and friends because there are too many germs.
Prematurity is recognizing that Charlotte is the outlier. She is doing remarkably well for a baby born 16 weeks early.
For so many others, prematurity means ventilators in their homes. It means a child who cannot speak, who cannot hear, who cannot walk. Prematurity means children who will never draw their parents a picture. It means children who will never be able to even hold a crayon. Prematurity is devastating.
Charlotte is a miracle. We are grateful everyday for her ever growing list of abilities. But for some, those abilities are not reality. When you pass those March of Dimes posters, please, feel inspired to give. Please donate to their cause. Their research, without question, saved our daughter's life.
But remember that the children pictured on the posters are not the face of prematurity. They are not the reality that many live with. As you read Charlotte's blog, keep in mind that she is what many parents would give anything to have.
So please, during this month of Prematurity Awareness, give to the March of Dimes. And remember. Remember what prematurity really is.
Sunday, November 14, 2010
An Update
We Interrupt this Prematurity Awareness Month programming to bring you an update on Miss Charlotte Amalie.
Charlotte's been doing really, really well this month. She's been home for almost three weeks since her last admission, and every day she seems to be getting better and better. The diuretics have really been helping, and her O2 sats have been great! We've gotten into a good routine of Speech Therapy on Mondays, Physical Therapy on Wednesdays and Occupational Therapy on Fridays, with an appointment on either Tuesday or Thursday. Yippee.
Her latest accomplishments include sucking on her hand, but she's not quite realizing that she has a hand yet... Go figure. When they say preemies are slow to pick up on things, dang, they mean slow.
We meet with the Pulmonary Team on the 18th and we'll know more about her lung/diuretics/oxygen situation at that time.
On the 10th we met with the Feeding Team, and they pretty much encouraged us to carry on with our current plan. We're offering the bottle two times a day and it's rather hit or miss. Somedays, she'll take 40 mLs, others, she won't take anything. Such is life. We've started with an Occupational Therapist, in addition to the Speech Language Therapist who will (hopefully) be able to address Charlotte's sensory issues with the bottle. And in case you were wondering, yes, Charlotte has issues :)
And that's about it!
Charlotte's been doing really, really well this month. She's been home for almost three weeks since her last admission, and every day she seems to be getting better and better. The diuretics have really been helping, and her O2 sats have been great! We've gotten into a good routine of Speech Therapy on Mondays, Physical Therapy on Wednesdays and Occupational Therapy on Fridays, with an appointment on either Tuesday or Thursday. Yippee.
Her latest accomplishments include sucking on her hand, but she's not quite realizing that she has a hand yet... Go figure. When they say preemies are slow to pick up on things, dang, they mean slow.
We meet with the Pulmonary Team on the 18th and we'll know more about her lung/diuretics/oxygen situation at that time.
On the 10th we met with the Feeding Team, and they pretty much encouraged us to carry on with our current plan. We're offering the bottle two times a day and it's rather hit or miss. Somedays, she'll take 40 mLs, others, she won't take anything. Such is life. We've started with an Occupational Therapist, in addition to the Speech Language Therapist who will (hopefully) be able to address Charlotte's sensory issues with the bottle. And in case you were wondering, yes, Charlotte has issues :)
And that's about it!
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