See You Monday

My younger sister is getting married on Saturday, so we'll be busy with wedding festivities all weekend (yay us!).

Just thought I would give y'all a heads up.

Before we commence radio silence, here's an update:

Weight: 3.98 kilos, or, wait for it... 8 pounds, 12 ounces.

Lungs: Currently on 2.5 liters of High Flow Nasal Cannula and requiring 30-40% O2. We're hoping she will be weaned to 2 liters this weekend, so that we can move forward on her feeding. The doctors don't want to push her in both respiratory AND feeding at the same time, so that if there is a set back they will know the source of the problem (either feeding OR respiratory).

Heart: Miss CA had an EKG done today and passed with flying colors. Her heart rate might be elevated, but its working just fine. (I love being able to say that).

GI: Charlotte Amalie had a salviagram done today. They basically gave her a few drops of some radioactive fluid and then watched that fluid travel down to her belly through an x-ray-like machine. The report came back: no aspiration. (I REALLY love being able to say that). This means that as soon as she is stable on respiratory support, we'll be able to aggressively start "feeding" her. They had planned on moving her ND tube (food goes into intestines, bypasses stomach) to an NG tube (food goes into stomach) yesterday, but they held off, so now it looks like by early next week she'll get some food into her belly.

Eyes: We were given a card to call an OUTPATIENT eye doctor to have her eyes checked, sometime during the week of August 23. {The doctors still are not confident that she will be an outpatient at that point, but they're hopeful, and so are we. A baby home by the end of August? That would be fantastic.} Anyway, as far as her eyes go, the right pupil is still rather constricted and slow to dilate, so we're hoping it's a side effect from the surgery. We won't know any more about her eye function until this check up, but the last eye exam showed that the ROP was regressing (love that word, too!) and so we're optimistic about her chances of having some vision in her right eye and we're fairly certain she will have full vision (but not perfect vision) in her left eye. Her peripheral vision will be "severely" impacted, but hey, we'll take it.

Any other questions? I think that's about it. Am I missing anything?

We'll see you Monday!

Yummy in my Tummy

Charlotte's feedings are being moved from ND to NG today, meaning they are going to start putting her food back into her belly. She had a milk scan yesterday, which showed reflux, but did not show signs of imminent aspiration. So we'll see.

They'll monitor her closely to make sure she's not struggling with the NG feedings, but it's a big step. The speech therapist wants to give her a day or two to get used to having food in her belly before doing a swallow study, so we're looking at sometime at the end of this week, or beginning of next week for a swallow study.

They've put off doing the brain MRI (a totally routine procedure for babies born as early as Miss CA) until she's on less oxygen support. She'll have to be sedated for the MRI and they don't want to sedated her until she's breathing better "on her own." Since the MRI is not clinically important (the results will just qualify her for therapy and such when she comes home) they don't want to push her on it.

And that's about all I know. It's hard getting used to the new NICU. We LOVE CCH (how many times can I say it?). We really felt like we were part of the team there, and at CHOP I feel a lot more like a bystander. I'm certain CHOP is where she needs to be, and I am so grateful that we have the chance to be close to such a fantastic hospital. It'll take a week or so to adjust, but we'll love the NICU at CHOP soon enough. Right? We will learn to love it, right?

I think I'm just in NICU mourning. Had you told me this five months ago, I would have laughed. But really, I love, love, love Chester County and we miss them. Who woulda thought?

CHOP

So we finally made it last night. The transport team arrived at Chester County around 11:30 and by midnight we were in our way down to CHOP. By 3:30 this morning she was all settled a I wandered aimlessly until I found a bed to sleep in.

This morning the doctors rounded on her and she is already set up to have a milk scan done this afternoon to evaluate her reflux. Her swallow study will probably be done tomorrow or the day after. We'll keep you updated on results and progress. I forgot to bring the camera adapter, so sorry, no pictures for the time being.

Thanks for all the help we've received and for the prayers.

Ok, I really need sleep now... Even I can tell I'm not making any sense.

More Important Things

I was all ready with a post dedicated to Miss Charlotte's nurses at Chester County Hospital, but there are more important things to talk about right now.

I'm asking for more help here people.

Peter's cousin, April, is pregnant with her second child. A baby girl. A baby girl who is due December 8, 2010. A baby girl who will probably make her entrance much, much sooner than that. April's little girl has a chromosomal disorder causing severe complications. The heart is underdeveloped and there is swelling around the baby's organs. Her heart rate has begun to slow down, and it doesn't look like there is much more time before this girl makes a very untimely entrance.

April and her family know that they will not spend this life with their girl. They have friends and family offering support and love, but this sweet daughter will not come home with them.

Please, say a prayer tonight. Give thanks for all that you have.

And then, ask, yet another time, for peace and comfort to be given to a family that desperately needs it. Ask for reassurance; ask that those they interact with will be kind and compassionate. Ask for peace. Ask for charity. Ask for a miracle.

Being at peace with the adversity in our life can be the biggest miracle of all.

And miracles happen. They happen everyday.

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.

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.

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!

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.

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.

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!

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.

Good Day

We've had some great news in the NICU today. First and foremost, her
eyes are stable and there is currently no reason to send her down to
CHOP. The eye doctor will check her again in a week, and If all looks
Good they might even switch her to every two weeks. They said the
next few weeks is critical for her long term eye sight. Past that,
the next six years are huge and after that, her eye sight will stable
out. She'll have problems with peripheral vision, and she'll likely
have severe near-sightedness, but only time will tell.

Also, she weighed in today at 3175 grams. That's 6 pounds 15.9
ounces. Which I think should totally count as seven pounds. Way to
go!!

And, CA's time on the high flow nasal cannula has increased to four
hours, two times a day.

Thanks you all so much for your love and support. We can't say it enough.

Post-Op

lksdfmadnsfpio;asdm,nasdf

That's about how I feel right now.

Charlotte's surgery on her left eye went well. She was a fighter and they had to give her more meds than they thought, but hey, what do you expect from her?

Charlotte's surgery on her right eye, not so much. "What?" you say? "I didn't know she was having surgery on her right eye, too." Yeah, neither did I.

Apparently, Charlotte's retina is beginning to retract in her right eye. This causes the center of the retina to buckle, or become detached. There is also the beginnings of edema, or swelling, under her retina. The eye surgeon saw this progression today during the surgery on her left eye and immediately laser "stapled" the retracting part of the retina (right eye) back in place. We're hoping it takes.

He'll check again on Friday.

If it works, it means eye exams one to two times a week, until discharge. If it doesn't work, it means transfer down to CHOP for an eval by CHOP eye doctors. They'll then most likely, remove the retracting part of the retina in her right eye. I won't go into detail, but I'll just tell you, eyes are yucky. Ugh. The description of the eye surgery at CHOP makes me shudder. Ugh. Thank goodness for wonderful eye doctors with stronger stomach's than mine.

I also met with the physical therapist today. She is fairly certain that we will need a swallow study before we begin oral feedings, since it's pretty obvious that Charlotte is aspirating. So yay. We'll deal with that later though.

Moral of this discombobulated post: We'll see what happens on Friday. Hopefully her eye will begin to heal and all this non-sense about going to CHOP will be in the past.

Hopefully.

I Love Our NICU

I haven't really had a good cry in the NICU yet. I see moms crying all the time in there, and usually, I roll my eyes at them. Mostly because it's (usually) a mom with a baby who is totally fine and will be leaving within 24 hours and I wanna scream GIVE ME A BREAK, but even just typing this, I realize what an awful, terrible, person it makes me.

Anyway....

Tonight there were some issues going on with another baby in the NICU, a baby I've really come to love and adore, and for some reason, sitting there, holding Charlotte, I felt a tear glide down my cheek. And another. And another. And then, there I was. Crying, in the NICU. We've been there for what, 18 weeks? And tonight, first tear in the NICU.

It's just that, well...

It's just not fair.

There.

I've said it.

It's not fair that a baby so tiny has to fight so hard. It's not fair that a baby as sweet as Charlotte has to experience so much. It's not fair that a laser surgery on her eye seems like no big deal. It's not fair that she'll wear glasses and have vision problems for the rest of her life. It's not fair that there are babies being intubated and there are mothers wondering when the antibiotics will finally kick in. It's not fair that we have to have crash courses in chemistry, biology and human anatomy. It's not fair how much I know about the respiratory system, the circulatory system, the digestive system... It's just not fair.

And of course, over walked Charlotte's nurse and for an evening, she was my nurse. She asked me what was going on-- she agreed that yeah, life kinda kicked Charlotte in the face. She told me to cry, to complain, to acknowledge our blessings-- and then, ever so tactfully, she talked about her siblings and her family. She laughed with me when I told her about my siblings and family, and most importantly, allowed me to move on. She acknowledged and then prevented me from wallowing. I left the NICU with a smile on my face and with a genuine peace.

Sometimes, I need a good cry. Sometimes, I need a good laugh. And I'm ever so grateful that tonight someone was there who knew how to handle both.

'Member, That One Time, When I Said...

Remember when I said her left eye definitely didn't need surgery?

Now it definitely does.

Tomorrow.

All by myself.

11:30 AM.

Awesome.

Two choices:
Fetal Position Time
Big Girl Time

Since Charlotte doesn't even know what the fetal position is,
I guess it's time to strap on some boots.

I'll be in the waiting room.
See you there.
(well, technically, I won't see you there, but, uhh, you know.)

PS-
Her vocal chords moved!! Yay for someday hearing her scream ALL.NIGHT.LONG.
However, they still haven't ruled out the need for a swallow study, so we'll get past the eye surgery and then we'll talk about what's next.

Thanks guys-- we'll chalk this win up to all of you!

Big Gulps

Today Charlotte Amalie is supposed to have a quick look down her throat. (I say "supposed to" because we all know how the medical system works-- oh, you don't? Lucky you.) So yeah, it should be today, but might be later this week.

What are they looking for?

The ENT doctor will take a peek and see if he can visualize some movement on the part of her vocal chords.

Why does that matter?

The vocal chords play a role in swallowing. Basically, they cover the respiratory track while swallowing, preventing aspiration.

Why are they looking at Charlotte Amalie?

They are looking at CA for a number of reasons.

First, and of course, LEAST likely has to do with the nerve that innervates the vocal chords. It is pleasantly placed right around the duct that had to be surgically closed way back when. One of the possible side effects of that surgery (the PDA Ligation) is vocal chord paralysis. Of course, since they know that is a side effect, the surgeon goes to extensive means to prevent that from happening, so it's doubtful that her vocal chords are severely damaged.

Second, CA just doesn't make noise. Every now and then, I hear a "ahhh" outta her, but in her four months of life, between me, the doctors and the nurses, we believe we've heard her make a noise approximately 10 times. Now, at 3 am when a new born is wailing their head off, not being able to make noise sounds great. However, we'd kinda like to go to her third grade Winter Holiday Concert and hear her sing in it.

Third, CA has a tendency to aspirate. They're trying to figure out why. Possibilities include a problem with her vocal chords, but it could also be something as simple as, oh yeah, she was born at 24 weeks. Severe prematurity can do a lot of things to you.

Fourth, CA has some nice, friendly acid reflux. Stomach acid can burn and damage the vocal chords.

So... What?

So IF they can visualize a problem, little miss CA will win herself a trip via ambulance down to CHOP for a swallow study. No worries. It won't actually be an emergency (that would be a trip via helicopter) but since she's so needy and all, an ambulance is required. A swallow study entails giving your child something semi radioactive and then taking pictures of where that stuff ends up. If it ends up in her lungs (called aspiration, or micro aspiration) we'll probably be staying at CHOP for a bit. woo. hoo. (note lack of excitement).

So... What?

If you get a chance to say a prayer, or think a positive thought, or light a candle, or help a stranger on the street, or WHATEVER it is you do to help good things happen, we sure could use a win on this one. Peter is gone for the next few months (we'll see him on a few weekends, and he comes home the beginning of November) on away rotations for medical school. Having CA transferred to CHOP, which is the finest of fine institutions, would be super, well, HARD.

Plus, like I said, those elementary school concerts pretty much rock. We'd love for her to be able to sing her little heart out one day.

Good thoughts are needed. Thanks.

These Days

Charlotte weighed in at 3020 grams last night.
That's THREE kilos.
That's huge.
That's also 6 pounds, 9 ounces.

We get to see our little one one like this two hours a day.
Today, they increased it to two hours, two times a day.
Four hours total per day on nasal cannula.
You can shout, "Hurray!" We did.
And it was LOUD.

Charlotte, with her Physical Therapist, Deb.
Deb does Range of Motion, Stretching Routines,
and my personal favorite, massage therapy.
Charlotte (usually) loves Deb.
I do, too. All the time.

And this is the "Are we really still at the NICU?" expression we both have once in awhile.
OK, more like every.single.night.
We're working on it.

That's all.

Report

Lungs: Charlotte is at a CPAP pressure of 6. The doctors and nurses tried to move her to a 5 today, but she made it quite clear that she was none too pleased with that move. So 6 it stays for another week, or until she shows clear evidence that she's ready to be moved down a notch. She's still on nasal cannula while we hold her, for an hour a day, as long as she tolerates it well enough. Once we hit a CPAP pressure of 5, they will start trying to "sprint" her to high flow nasal cannula FOR REALS. Awesome, eh?

Feedings: Charlotte Amalie is still rocking the ND tube. Rocking it so much that they were able to decrease her rocket fuel to plane ol' jet engine fuel. Normal breastmilk/formula is 20 calories/ounce and for the past 2 months or so, CA has been on 28 calories/ounce (they add "formula" to my breastmilk to fortify it). Yesterday, they moved her down to 26 cal/ounce. We're hoping she'll be on 24 or 22 cal/ounce by the time she comes home. CA is currently eating continuously (reason 48 why the NICU isn't such a bad place-- continuous feeds... all day, everyday. Yum, yum!) and she's taking in 18 mL/hour, which adds up to 14.6 ounces a day.

Weight: I didn't get the exact amount, but CA is weighing in at 6 pounds, 8 ounces these days (another reason to cut back on her calories-- she's getting huge!). She measured 18.5 inches this past Sunday. It's like having a baby!

Eyes: As of last Friday, CA looks as though she will not need any more surgery on her eyes. Her left eye is regressing to a point where it will definitely (I hate that word-- nothing is definite in the NICU) not need surgery. Her right eye is "stable" and the doctor thinks it will regress all on its own. We should have another update in a day or two, and he will continue to watch CA until she is discharged.

Other: Currently, CA is on track to be home at the end of July/beginning of August. But please, don't tell her. She doesn't like to know that she's getting better. :)