The picture may be blurry, but I just have to say:
Charlotte,
I know how you feel, girlfriend.
Seeing Katie makes me wanna scream, too.
Sunday, July 25, 2010
I Know How You Feel
The picture may be blurry, but I just have to say:
Charlotte,
I know how you feel, girlfriend.
Seeing Katie makes me wanna scream, too.
Friday, July 23, 2010
Transfer
Charlotte is scheduled to be transferred to CHOP on Monday. Of course, that means she probably won't be transferred until Tuesday, since that's how things just work, but for now, Monday is the plan. Depending on the results of her test, she may be able to come back to Chester County to "learn" how to feed/breathe. If she does "poorly" on her tests, CHOP will be her new home.
It's a bitter-sweet goodbye to Chester County. We've loved the staff there, and the idea of getting used to a new NICU-- one that's much more intense, and much larger-- is rather intimidating. But we know CHOP, so it's not too, too scary.
We just don't want to say goodbye to our friends at CCH. While all good things come to an end, I can't believe we might be closing this chapter in our NICU story.
It's a bitter-sweet goodbye to Chester County. We've loved the staff there, and the idea of getting used to a new NICU-- one that's much more intense, and much larger-- is rather intimidating. But we know CHOP, so it's not too, too scary.
We just don't want to say goodbye to our friends at CCH. While all good things come to an end, I can't believe we might be closing this chapter in our NICU story.
Wednesday, July 21, 2010
These Days
One group of medications. Charlotte gets these several times a day.
So she can grow big and strong like this.Weight: 8 pounds, 1.4 ounces
Lungs: Our first 24 hours without the CPAP. I know, she'll probably need to go back on it at some point, but Hallelujah!!! She's currently being weaned to 3.5 Liters on High Flow Nasal Cannula (she was at 4 Liters).
Feedings: CA has been consistently taking 5 mL 1xday for the past 5 days or so. Yay! She's a super star.
Now what?:CA still needs to go to CHOP for her swallow study. Currently, we're trying to decide if she will go to CHOP and stay at CHOP until all her feeding issues are resolved (and she can come home from there) or if she'll just go to CHOP for the test, and come back to Chester County for feeding management. There are benefits to both, and we're so tired of making decisions, I think we're going to ask the eight ball.
When will she come home?: If you know the answer to that, I have a lot of people who would like to talk to you. Currently, we're hoping before Labor Day. But who knows. Charlotte likes to do things her way. Could be tomorrow (OK, not REALLY tomorrow) could be Halloween (better not be...). We just simply don't know at this point.
We do know she's super cute, loves her mobile and can't wait for Mommy to go hold her :)
As always, thank you for your continued support. We love you so much!
Lungs: Our first 24 hours without the CPAP. I know, she'll probably need to go back on it at some point, but Hallelujah!!! She's currently being weaned to 3.5 Liters on High Flow Nasal Cannula (she was at 4 Liters).
Feedings: CA has been consistently taking 5 mL 1xday for the past 5 days or so. Yay! She's a super star.
Now what?:CA still needs to go to CHOP for her swallow study. Currently, we're trying to decide if she will go to CHOP and stay at CHOP until all her feeding issues are resolved (and she can come home from there) or if she'll just go to CHOP for the test, and come back to Chester County for feeding management. There are benefits to both, and we're so tired of making decisions, I think we're going to ask the eight ball.
When will she come home?: If you know the answer to that, I have a lot of people who would like to talk to you. Currently, we're hoping before Labor Day. But who knows. Charlotte likes to do things her way. Could be tomorrow (OK, not REALLY tomorrow) could be Halloween (better not be...). We just simply don't know at this point.
We do know she's super cute, loves her mobile and can't wait for Mommy to go hold her :)
As always, thank you for your continued support. We love you so much!
Monday, July 19, 2010
This One Is For Caleb, That One Is For Charlotte
I have a necklace I wear frequently. It's a simple white gold chain from which hang two of my most "prized" possessions.
One, a blue topaz jewel (December birthstone), was given to me by Peter, right as I held Caleb in my arms for the first time. It was a true surprise, made and planned with love and true admiration.
That one is for Caleb.
The other, a silver pendant, was given to me by a close friend of Peter's. On it are Charlotte's initials. It was waiting for me when I came home from the hospital; the day I left my baby and came home. It was one of the kindest gestures anyone made, so simple, so quiet, made without fanfare.
That one is for Charlotte.
Caleb loves to play with them while I'm holding him. He'll pick them up and finger them with his chubby little toddler hands and in a toddler way, give possession to each one. "That one is for Caleb," he declares with pride. "That one is for Charlotte," he mentions with love, and slight confusion.
This weekend, we packed our things and went down to see Daddy. Daddy has been in Portsmouth, Virginia for two weeks, and Caleb has missed him dearly. Every time we'd get in a car, or make a phone call or greet a visitor, Caleb was sure that Daddy was the intended recipient. His disappointment that Daddy was still gone broke my heart.
It was hard to say goodbye to our girl, especially as she's getting bigger and bigger. We're getting to a point where I can meet many of her needs now, and it feels wonderful. Like I have a purpose-- finally.
We've never gone anywhere much more than 2 hours away since she was born. I felt like I was being torn in two, mile by mile as I drove down.
But you know what?
Those weekends, those weekends spent in the hospital, by her bedside, those were for Charlotte.
This weekend, this weekend with just Momma and Daddy, this was for Caleb.
One, a blue topaz jewel (December birthstone), was given to me by Peter, right as I held Caleb in my arms for the first time. It was a true surprise, made and planned with love and true admiration.
That one is for Caleb.
The other, a silver pendant, was given to me by a close friend of Peter's. On it are Charlotte's initials. It was waiting for me when I came home from the hospital; the day I left my baby and came home. It was one of the kindest gestures anyone made, so simple, so quiet, made without fanfare.
That one is for Charlotte.
Caleb loves to play with them while I'm holding him. He'll pick them up and finger them with his chubby little toddler hands and in a toddler way, give possession to each one. "That one is for Caleb," he declares with pride. "That one is for Charlotte," he mentions with love, and slight confusion.
This weekend, we packed our things and went down to see Daddy. Daddy has been in Portsmouth, Virginia for two weeks, and Caleb has missed him dearly. Every time we'd get in a car, or make a phone call or greet a visitor, Caleb was sure that Daddy was the intended recipient. His disappointment that Daddy was still gone broke my heart.
It was hard to say goodbye to our girl, especially as she's getting bigger and bigger. We're getting to a point where I can meet many of her needs now, and it feels wonderful. Like I have a purpose-- finally.
We've never gone anywhere much more than 2 hours away since she was born. I felt like I was being torn in two, mile by mile as I drove down.
But you know what?
Those weekends, those weekends spent in the hospital, by her bedside, those were for Charlotte.
This weekend, this weekend with just Momma and Daddy, this was for Caleb.
Friday, July 16, 2010
Friday's Plan
Charlotte weighed in last night at 7 pounds, 9 ounces. She just doesn't know she's too big for the NICU.
Today she is being sprinted 5 hours, 3 times a day onto High Flow Nasal Cannula. That's because she's a rock star.
Or because she's about 1 month corrected and has finally realized it's time to be a real baby now.
Today she is being sprinted 5 hours, 3 times a day onto High Flow Nasal Cannula. That's because she's a rock star.
Or because she's about 1 month corrected and has finally realized it's time to be a real baby now.
Wednesday, July 14, 2010
Breathe In, Breathe Out
These days, Charlotte's updates primarily revolve around her breathing. Of course, I am going to prove myself wrong with that since I have so much to update.
Weight: You won't believe it. I didn't. 3355 grams. 7 pounds, 6 ounces. I told you you wouldn't believe it.
Eyes: As of last Friday, CA's eyes looked stable. They will be checked again this week, and hopefully the progression that occurred in her right eye will not occur in her left. If everything looks good this week, we MIGHT get the go ahead to move to every two weeks for eye exams. That would be great-- I mean, would you want your eyes dilated every week? No thank you.
Lungs: CA is currently doing 3 hours on high flow nasal cannula, three times a day. She's on 4 Liters (I'm pretty sure this means she gets 4 liters of air every minute through the nasal cannula, but I really don't know for sure). The rest of the day she is on CPAP with a pressure of 6. The plan is to increase her times by one hour, as she tolerates it. So hopefully sometime this week she'll go to 4 hours, 3 times a day. Then 5 hours, then 6 hours, etc. Until she's CPAP free.
Dietary: There was an attempt to feed Charlotte by bottle this week. She drank a whole 1 mL. Go girlfriend! This attempt was an opportunity for the speech pathologist to watch her eat and see what physical abilities Charlotte has when it comes to the suck/swallow/breathe routine. CA did well with the suck, mediocre with the swallow and totally forgot about the breathing part. Pretty typical. They'll continue to use oral feedings as part of Charlotte's Physical and Speech Therapy time. If she doesn't improve with her feeding skills, she'll go down to CHOP for the swallow study, but not until she's totally off of CPAP for breathing. Phew.
Acid Reflux: For all those non-chemistry majors out there, a pH of 7 is considered neutral. The lower the number, the more acidic (ie Lemon Juice), the high the number, the more basic (ie, Soap). Stomach contents should be slightly acidic, hopefully in the 3-5 range. CA is rockin a solid stomach pH of 1. ONE. That's pure HCl folks. Awesome. That's gotta burn. They have changed her medication to prilosec and hopefully that will start to kick in soon. Ugh, I hate heart burn. Poor baby.
Length: CA was born at 11 inches. This week, she's rocking an awesome 19 inches long. That's a real baby length!
Weight: You won't believe it. I didn't. 3355 grams. 7 pounds, 6 ounces. I told you you wouldn't believe it.
Eyes: As of last Friday, CA's eyes looked stable. They will be checked again this week, and hopefully the progression that occurred in her right eye will not occur in her left. If everything looks good this week, we MIGHT get the go ahead to move to every two weeks for eye exams. That would be great-- I mean, would you want your eyes dilated every week? No thank you.
Lungs: CA is currently doing 3 hours on high flow nasal cannula, three times a day. She's on 4 Liters (I'm pretty sure this means she gets 4 liters of air every minute through the nasal cannula, but I really don't know for sure). The rest of the day she is on CPAP with a pressure of 6. The plan is to increase her times by one hour, as she tolerates it. So hopefully sometime this week she'll go to 4 hours, 3 times a day. Then 5 hours, then 6 hours, etc. Until she's CPAP free.
Dietary: There was an attempt to feed Charlotte by bottle this week. She drank a whole 1 mL. Go girlfriend! This attempt was an opportunity for the speech pathologist to watch her eat and see what physical abilities Charlotte has when it comes to the suck/swallow/breathe routine. CA did well with the suck, mediocre with the swallow and totally forgot about the breathing part. Pretty typical. They'll continue to use oral feedings as part of Charlotte's Physical and Speech Therapy time. If she doesn't improve with her feeding skills, she'll go down to CHOP for the swallow study, but not until she's totally off of CPAP for breathing. Phew.
Acid Reflux: For all those non-chemistry majors out there, a pH of 7 is considered neutral. The lower the number, the more acidic (ie Lemon Juice), the high the number, the more basic (ie, Soap). Stomach contents should be slightly acidic, hopefully in the 3-5 range. CA is rockin a solid stomach pH of 1. ONE. That's pure HCl folks. Awesome. That's gotta burn. They have changed her medication to prilosec and hopefully that will start to kick in soon. Ugh, I hate heart burn. Poor baby.
Length: CA was born at 11 inches. This week, she's rocking an awesome 19 inches long. That's a real baby length!
Saturday, July 10, 2010
In Regards to Miracles
The last few months have filled our lives with miracles. On a daily basis, we are reminded of the constant need we have. The need to ask for more, to expect one more blessing, to beg for one more day that surpasses expectations.
We also experience the undying, overwhelming, constant emotion of gratitude. Grateful for one more day. For one more hour, one more test result, one more afternoon of holding our baby-- grateful for the chance to touch her skin and not tear it open, grateful for the periods of apnea, because it means she's breathing on her own every other moment. Grateful for the high heart rate because it means her heart is beating. It's working. Her heart; it works.
Grateful she's alive.
Ever so grateful she's alive.
And so as we struggle with the juxtaposition of our two realities-- the yearning for miracles and the all encompassing feeling of gratitude-- we realize that the greatest miracle we have is this conundrum. The very fact that we struggle to balance the need to ask for "more, more, more" and the emotional high of having so much, it means we have a child here. A child that's trying so hard to be here. A child that's struggling each day a little less than the day before.
And so as we talk of miracles, we recognize that we've already received the greatest miracle possible. A child. A child who doesn't need to ever see, ever walk, ever talk, ever swallow to be a miracle.
Her very existence is the miracle. The one we will be incredibly grateful for, for the rest of our lives. We can hope and pray and be grateful for anything else that comes along, any other ability that she may possess, but those "talents" are not her shining stars. Those abilities are not manifestations of a Higher Power.
She is the manifestation.
She always will be.
And we're ever so grateful.
We also experience the undying, overwhelming, constant emotion of gratitude. Grateful for one more day. For one more hour, one more test result, one more afternoon of holding our baby-- grateful for the chance to touch her skin and not tear it open, grateful for the periods of apnea, because it means she's breathing on her own every other moment. Grateful for the high heart rate because it means her heart is beating. It's working. Her heart; it works.
Grateful she's alive.
Ever so grateful she's alive.
And so as we struggle with the juxtaposition of our two realities-- the yearning for miracles and the all encompassing feeling of gratitude-- we realize that the greatest miracle we have is this conundrum. The very fact that we struggle to balance the need to ask for "more, more, more" and the emotional high of having so much, it means we have a child here. A child that's trying so hard to be here. A child that's struggling each day a little less than the day before.
And so as we talk of miracles, we recognize that we've already received the greatest miracle possible. A child. A child who doesn't need to ever see, ever walk, ever talk, ever swallow to be a miracle.
Her very existence is the miracle. The one we will be incredibly grateful for, for the rest of our lives. We can hope and pray and be grateful for anything else that comes along, any other ability that she may possess, but those "talents" are not her shining stars. Those abilities are not manifestations of a Higher Power.
She is the manifestation.
She always will be.
And we're ever so grateful.
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