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Thursday, September 30, 2010


I know I just posted about another family who needs some help, but sadly, there is a lot of suffering in the world.

If you get a chance to check out this family's blog, you'll read the story of a mother. You'll read that two weeks after delivering three healthy babies, she suffered a major brain hemorrhage. She's been in the hospital for ten days. She was extubated today and she's working hard to make it back home to her babies, but she has a bit of a fight herself.

Isn't it a miracle how many times this whole getting pregnant/being a mom/having children/growing old thing works? There are so many things that can go wrong, so many people who struggle to do the very things that others find so easy. It really is a miracle that it works as many times as it does.

So say a prayer tonight for those times it doesn't work, for those people who struggle.

Thanks for making our stumbling block into a stepping stone.

Home Updates

Charlotte has had a busy week just laying there getting bigger and bigger. At her Developmental Clinic appointment, Charlotte weighed in at 5.75 Kilos (12.5 pounds), measured 21.5 inches and had a head circumference of 37.5 cm.

That's not on the chart for a 7 month old, but for a 3 month old (her corrected age) she's in the 40th percentile for weight, and sigh, not on the chart for length or head circumference. But 40th for weight! That's super exciting.

Also at her developmental clinic she was determined to be right on target for a 3 month old. Which is HUGE. The only section she scored below average (as in, what should a normal 3 month old be doing) on was verbal communication, but umm, she has a paralyzed vocal cord... we were not expecting her verbal reasoning to test very high at all.

I'll post the actual scores when I get them in the mail, but she was on target exactly to.the.day of her due date. It was pretty exciting.

Other than that, we've had to head back to CHOP once this week, to have her gtube replaced, but it was quick and (for me at least) painless. (NOTE: changing a gtube is yucky. REALLY yucky).

And that's what we're doing these days. She's using oxygen in the car, at night and during her feeds, but she does pretty well otherwise.

That's our story. What's yours?

Monday, September 27, 2010

Help Help Help

There are times in everyone's fight when you come to realize that things are really not that bad. Sometimes, that realization comes because of progress made... other times, that realization comes when you see the fight others are waging.

A little boy, Gabriel, is fighting the hard fight. Born with Spinal Muscular Atrophy type 1, Gabriel is only four months old. His life expectancy is less than 1-2 years.

His family is also fighting the hard fight-- learning the intricate world of his medical condition. His mom, his dad, his two brothers... they are all working hard to make life easier for Baby Gabriel. His grandparents, his aunts, his uncles, his cousins-- they all love him, too.

So let's make this journey a little easier for them. Let's carry their burden as they carry Gabriel's.

You can click here to make a donation to the family.

You all gave us a miracle. You gave us the love and support we so desperately needed to get through Charlotte's long journey. Gabriel's journey is going to be much longer, and much harder.

Give what you can financially. Then give what you wish you could afford to give in the currency of love, hope, and strength.

Thursday, September 23, 2010

Discharge Stats

Charlotte was discharged today and is residing happily at home (as long as someone is holding her constantly... otherwise, not so happy).

Here's her latest run down:

Weight: 5.4 kilos (11 pounds 14.5 ounces)

GI: Currently taking 22 calorie Good Start (don't even get me started on having to use Nestle formula...) 75 mL 4 times a day, and 50 mL/hr for ten hours at night, for a total of 27 ounces/ day.

Lungs: On room air, except for car rides. (She flunked her car seat test miserably... oh well)

Meds: One. Can you flippin believe it? One. Prilosec. Awesome.

Follow-ups: Pediatrician, NICU follow-up clinic, Airway Team (ENT), Speech, and Eye.

Other: Enjoy family.

Caleb got in the car with her today and said, "Oh, Mommy, you found Baby Charlotte! I thought she was lost! I missin' her all the time!" (Does everything a two year old say end in an exclamation point?)

That's all folks, I have to go take care of my baby.


Wednesday, September 22, 2010

Look, Mom, No Tubes!

There's peaceful, sleeping Charlotte:

And then, there's Grumpy, Why-the-heck-are-you-looking-at-me Charlotte:

I just love that you can see her.

I love that people who meet her will see her face, and not some oxygen tubing.

I love that she can finally sneeze without something blowing back in her nose.

I love her.

With or without oxygen/G-tubes/NG-tubes/apnea monitors/pulse-ox's.

I love her.

And she's coming home.


(Let's hope this time, it's for keeps)

Monday, September 20, 2010

Baby Switch

OK, I'm fairly certain that someone switched my baby on the transport from the PICU to the ICS floor. Despite the fact that I walked the entire way with her, and that she has the same medical record number, it MUST be a different baby.

Charlotte Amalie is an interactive, smiley, happy, non-wretching baby these days. She's also breathing room air. For the past 30 hours, nothing but room air. It must feel fantastic to have those tubes and tape and everything off your face.

So yeah, I know I dragged my feet on the Nissen... I know, I threw a fit about her needing a g-tube... but I'm here to tell you, uhh, I was wrong. {Don't tell anyone}. It's only been a few days, so my opinion might change in the future, but I am documenting it now: this procedure has made a HUGE difference for Charlotte.

Charlotte's scheduled to come home sometime between Wednesday and Friday. The past two weeks in particular have been pretty difficult. We've gotten some rough news, we've weathered some crazy storms, but days like today, make it all OK.

Well, days like today, and long, long naps.

Saturday, September 18, 2010

Movin On Up, to the West Side

CA is heading to the West Side today. Four West, Seashore House, to be specific. Her brady episodes have gotten fewer and farther between, so we feel confident that it was just the sedation lingering longer than normal. Now we know :)

We're happy to report that Charlotte is back to 1/8 L oxygen, and is being moved up to full feeds today. Hopefully by Monday or Tuesday, we can be talking about discharge.

Yay for good news!

Friday, September 17, 2010

PICU Day 3

Miss Charlotte is doing well here in the PICU. So well, in fact, she has decided to never, ever leave. (OK, that's an exaggeration).

For the past 36 hours Charlotte has been dropping her heart rate, an event called bradycardia, which is frowned upon in the medical field. Charlotte's resting heart rate, as you may remember, has always been pretty high-- a side effect, most likely, from the PDA damage. Most six month olds would typically have a heart rate around 90-100 beats per minute. Charlotte is usually around 150. Not alarming, as every kid is different.

However, for the past day and a half, Charlotte has been dropping her heart rate to well below 100-- mostly to the 70's and 80's but a few times down into the 50's and 60's. All the major "problems" that doctors worry about have been ruled out: She's not septic, she's doesn't have a blood clot, she doesn't have a brain bleed, she's keeping her oxygen sat's up, etc. There doesn't seem to be any symptom to go along with these drops in heart rate.

Last night a CT scan of her head was done, to rule out an acute brain bleed, and it came back "normal for a micropreemie." Meaning, nothing happening right now, but there was "significant loss of brain mass" and "increased cerebral spinal fluid to compensate for brain loss due to a prior incidence." Prior incidence being born way to early. The beautiful part of being a preemie is that nothing is definite. Brain loss like this could mean severe impairment, or it could mean nothing. The CT only shows structure, it cannot comment on function.

The main thing is that she is not critically ill, and we're just not sure how serious these bradys actually are. Typically they are something that indicate something else is going wrong, but we're now entering the "less likely" field of explanations (ie Seizures). So it could very well be that Charlotte has just "re-set" to a new normal, and these bradys are just her new resting heart rate. Or that she just really, really, really loved that sedation and its taking a long time to leave her system.

Someday, though, we're gonna break outta this place. Maybe next week?

Wednesday, September 15, 2010

Day 199

Miss Charlotte Amalie ~

199 days of life baby girl. 193 spent in the hospital. 6 spent at home.

199 days of worry, of progress, of steps in the right direction one day, and steps in the wrong direction the next. 199 days of growing stronger. 199 days of growing.

Approximately 170 days of knowing what we were going to name you, around 185 days with a titanium clip in your heart, and more than 15,000 miles driven between the hospital and home.

Almost 60 of those days, Daddy has had to be away, and around 10 of those nights we've spent at the hospital, sitting by your bed, waiting for improvements, for updates, for any information at all.

You've had over 15 blood transfusions, numerous courses of antibiotics, and a total of five surgeries: One on your heart, three on your eyes, and one on your belly.

But more than that, more than any number can express, the past 199 days have brought us tiny smiles, a fuzzy head of hair, incredibly dry lips, and bright, bright blue eyes. They've given us huge successes, major improvements and undeniable miracles. We've watched you grow physically, and we've watched those around us offer strength.

We've learned that the smallest things can bring a huge high: seeing you track something with your eyes, watching you move your wrist, hearing that "suck, suck, suck" of the chupi in your mouth; the list is endless.

Charlotte, the past 199 days have brought us you.

Someday, Baby Girl, you'll read all of this. You'll read the weariness written between the lines. You'll recognize the worry, you'll see right through the updates and notice the concern. But I hope you can see past all of that, too. I hope you can see how proud we are of you. I hope you can read the relief we feel, I hope you can sense the faith we have in you.

I hope you grasp the incredible purpose that you have. The past 199 days have taught me so many, many things, not the least of which is to never, ever count you out. You have spunk, baby girl.

199 days of spunk.

~ Momma


Miss Charlotte is sleeping comfortably in the PICU at CHOP. Her surgery went well-- they were able to perform the nissen and place the g-tube without any problems. There was some concern that she had aspirated during the procedure, but her x-ray looks fine and clinically, she's doing really well. The PICU was able to extubate {remove the breathing tube} about three hours after the surgery ended. They kept the breathing tube in longer than usual, just as a precaution, since there was a possible aspiration, and because of what the ENT doctors saw.

ENT (Ear, Nose, and Throat) performed a bronchoscopy before the surgery began, to get an idea of how Charlotte's vocal chords and airway looked. We knew she was inflamed and that the reflux had been irritating her throat, but the ENT doctor confirmed that her left vocal cord is not functioning. This explains her severe tendency towards aspiration, as well as her hoarse voice. We don't have a clear understanding of what this will mean long term, but we at least have a starting point.

We hope that recovery will take about 3-5 days and then, barring any complications, she should be coming home.

Tuesday, September 14, 2010

Surgery Number, uhh I forget

{Just kidding about the forgetting how many surgeries she's had-- It's four. Five tomorrow. Charlotte has been extremely lucky for a preemie of her size/gestation in that she's only had the heart and eye surgeries. The really scary surgeries happen when a baby has a bowel perf from NEC or something of the like.}

Bright and early tomorrow morning the OR team will start their day with Miss Charlotte. In another round of "You've been to CHOP too many times", Charlotte's surgeon is the same one who did Caleb's surgery a mere 13 months ago. I think we either win a prize for that, or get referred to DHS...

The surgeon is performing a nissen fundoplication and placing a g-tube. In a 3 for 1 deal, he's also going to repair her umbilical hernia on the way out. That's how we roll.

The IV team has been in, worked their magic, and our little miracle has begun her surgical preparations. Which means I should start trying to sleep.


Friday, September 10, 2010

Sepsis Shempsis

Charlotte's lab work showed gram positive cocci bacteria in her blood today. This bacteria confirms the diagnosis of sepsis {Charlotte's high fevers, high heart rate, and practically none existent blood pressure all pointed towards sepsis long before they had an actual bacterial growth in the blood culture}. Luckily for Charlotte, her doctors had been treating her for sepsis for about 36 hours prior to this, even though two prior cultures had shown no growth. Thank goodness for doctors paying attention to symptoms and not just test results.

We're still not certain the exact strain of cocci but we do have the type of bacteria that we need to fight off. They started her on vancomycin, cefepime, and unasyn (all antibiotics) and she's doing much better.

She's been moved back to the Integrated Care Service floor and is waiting to be bacteria free before they will schedule her surgery.

Take that sepsis. Take that.

PS-- Echo and cardiac labs were all normal, indicating that the infection had not reached the heart. Woohoo!!

PICU Update

On Tuesday, Charlotte was discharged from the NICU and sent to a floor for children with chronic medical needs. This way, if she is ever admitted to the hospital again, it will be the same team of doctors and nurses caring for her. Tuesday night was rough for her-- her fever spiked again, up to 39.7 C, and she went way up on her oxygen requirements. They stopped her feeds, placed her on IV nutrition, and took her for a chest xray. By Tuesday afternoon, we were mostly convinced that she had aspiration pneumonia, so antibiotics were changed and everything looked pretty good. Charlotte was still sick, but at least we had something to go on. Around 1:00 AM Thursday morning, Charlotte's condition set off an automatic call to the PICU. Her high heart rate, her temperature, her vital signs were enough to signal to the nurses and doctors that she needed some more help.

Charlotte was admitted to the PICU at CHOP. She was using a lot of energy to breathe, her heart rate was all over the place (she would brady one minute {drop her heart rate below 80} and then the next she would be well over 225), and she just generally did not look good. Her coloring was off, she wasn't waking up, and her fevers were still pretty high, even with Motrin and Tylenol.

By Thursday afternoon, Charlotte was looking better, but still not fantastic. The PICU doctors were concerned about some irregularities on her EKG, along with a viral infection that was in her blood. The fear was that this infection might have affected Charlotte's heart. An echo was done and we are still waiting for the results of that.

Otherwise, Charlotte seems to be doing better-- the antibiotics for the pneumonia are kicking in, and her fevers are down. Her blood work remains negative for any massive infection or obvious problem, so we're relieved by that. Just being in the PICU seems to be enough for Charlotte to get herself in gear. We don't have any results yet from the echo, but we should have those today. As long as everything on the echo is normal, we should be able to return to her "normal" floor of the hospital.

I wish I had more definitive news for everyone, but I will say this: On Tuesday/Wednesday, Charlotte looked pretty dang sick. But last night when I left the hospital, she looked good. She had much better coloring, her heart rate was much more even, her breathing was not nearly as labored, and even her fever seemed to subside for a bit.

We're still not sure who the shooter is, but it appears, for the moment, that we have dodged this bullet.

Monday, September 6, 2010

Peter's Residency Application Essay


I had just finished my 3rd year OB/Gyn rotation and my wife, 23 weeks pregnant, and I were celebrating with a nice dinner. For 23 weeks we talked about names, made guesses regarding gender, dreamt about the future. We used adjectives such as "cute, "adorable", and "chubby." We planned for this baby, this child who was just beginning to show in my wife's profile. We loved. We laughed. We attempted to prepare our two-year-old son. We glowed. We didn't think "what if." We didn't use words like "viability", "ventilator" or "resuscitation." We didn't worry. We didn't falter. We just didn't know.

The drive from the restaurant was made firmly in medical mode. Just coming off my OB/GYN rotation only hours before, I was medically sanitized. "Preterm Premature Rupture of Membranes" was the proper medical term, but it did not begin to address the reality that was beginning to unfold. Clinically, I knew that at 23 weeks gestation, we were still shy of that magical term-a term I was quickly developing a strong distaste of-viability.

Four days later, two days past our "viability" threshold, we entered the OR. As a medical student, I had seen a C-section several times. I had been the one to hold the obligatory bladder blade more than once-many, many more times than once. The auditory cues were the same, but on the other side of that blue sheet, my wife's C-section didn't feel like the pattern I had come to know so well:

Time of Delivery: 0213
Sound of Baby's first cry

Instead, "Time of Delivery" and the OR door swinging shut were simultaneous. The air rang silent. The Neonatologist had rushed our daughter out to begin resuscitation.

Thus began our introduction to the Neonatal Intensive Care Unit. That evening was Charlotte's first in the NICU. She weighed in at 560 grams. That evening, we just didn't know the level of her viability.

In the coming days, weeks, and months, my wife and I enrolled in hands on courses in Patent Ductus Arteriosis, Chronic Lung Disease, High Output Cardiac Failure, Retinopathy of Prematurity, and Retinal Detachment. We've had crash courses in ventilator settings and speech pathology. We learned to appreciate small things: 0.5mL enteral feeds, nights uninterrupted by phone calls and days when nothing changed.

I've learned that medicine is more than a white coat and a stethoscope. I learned, for me at least, what it means to be on the other end of a medical school education. I've learned that "viability" doesn't limit itself to micro-preemies or ELBW's-instead, it applies to us all. Viability means having the ability to grow, improve, and develop. As doctors, as patients, as parents, we are all seeking to be viable; to stretch our ability and overcome our weaknesses.

Throughout this experience, I've processed everything through my medical filter. But as a parent I've come to see how important seemingly routine lab values can be to a family. How test results can bring comfort, and how any answer, good or bad, is better than just not knowing. I've experienced how humbling it can be to have such little power over the outcome of your child. I've known the agony of a parent deciding between continuing the fight to keep a child with you, or letting them go be with God. I've known the long hours of doing nothing more than rocking a sick infant; an infant who weighs more in wires and lines than in body mass.

This knowledge impacts my actions. Working with families, I feel a responsibility. I know what it means to have a doctor fighting for your child, and I have committed to being that doctor for others. Just as I bring my medical knowledge to the table with Charlotte, I bring my personal experience with me as I interact with patients.

Once a week during this ordeal I had the opportunity to sit down with the Neonatologist and round on my daughter. He seemed to know that I needed this, this chance to have some control, even if it was to just agree with his plan for the week. As I have explored the many fields of medicine during my rotations I have been touched by Pediatrics. Whether it is helping a mother learn to breastfeed, or taking the time to form a bond with the teenager who is headed down a difficult road, Pediatricians play an invaluable role. I know that as a Pediatrician, I would do more than treat an illness-I would have the chance to heal a person.

I began medical school with the intention of avoiding 'snotty nosed' kids, at any cost. I spent the winter cold and flu season seeing many of them in an inner city clinic. To my surprise, and with certain humility, I found that treating children is where my medical knowledge makes the most sense. I've learned that it is treating those very children that brings me the most joy, that challenges my intellect, that pushes me to become more viable. More viable as a doctor, more viable as a person.

This evening, is Charlotte's 186th spent in the NICU.
This evening, my daughter weighed in at 4500 grams.
This evening, we are both continuing to prove our viability.

P is for Prayers

Charlotte spiked a fever today of 104 degrees F (40 degrees C).

We don't know why and she's currently not showing any other signs, other than a rapid heart rate. Her initial blood work, abdominal girth, and lung sounds all check out. Her white count is a little low, but not incredibly alarming.

Her fever has not responded to tylenol or ice baths. For some reason, this fever is just not coming down the way they would like it to.

We're hoping for more answers in the next 24-48 hours, as her blood cultures start coming back, otherwise, it looks like Miss Charlotte will need a spinal tap.

Please pray for answers. We know her doctors and nurses are doing all they can to keep her healthy, but fighting against a nameless infection can be difficult. It helps to know the enemy. Thank you all. We'll keep you updated as we learn anything.

Saturday, September 4, 2010

P is for Progress

Charlotte is doing much better these days. I keep saying that I hadn't realized how much she had regressed until I saw how well she was yesterday. Her downhill was so gradual that from day to day nothing was too extreme, but now that she is feeling so much better, I can see how sick she really had gotten.

Anyway-- she looks 100% better. She's being continuously fed through an ND tube (food goes into her intestines, bypassing the stomach). Since she no longer has food to aspirate, and her stomach is not irritated by reflux, her breathing is much less labored and she is requiring less oxygen. She still has not been seen by the general surgery team, but the neonatologists expect her to be on the surgery schedule the week of 9/13. So we'll hang out at CHOP until then.

Thanks for your continued love and support.

Thursday, September 2, 2010


Miss Charlotte was admitted to the N/IICU (Neonatal/Infant Intensive Care Unit) at CHOP last night for her problems with her feeds.

So far she has had another upper GI, which is a scan done by fluoroscopy. Barium was injected into her belly through her NG tube, and an x-ray like machine took a video of the barium moving through her intestines. It verified what we already knew-- her general anatomy is perfect. No problems to report. (Ironically, it was the same radiologist who diagnosed Caleb's problem around this time last year.)

The team of neonatologists consulted and decided that they are going to go ahead a recommend having a procedure called a Nissen Fundoplication and placing a G-tube at the same time. The Nissen is a surgical procedure, but it is a very, very routine procedure-- especially for preemies of Charlotte's kind :) The Nissen will prevent any reflux, which seems to be the source of her problems. It will also mean a lot more feeding intervention than we thought she would need initially. Such is life.

It can be done as a laparoscopic procedure (no incision, just a camera and some instruments) but sometimes needs to be a full incision, it'll depend on how the surgery goes.

So the hope is that we will consult with the general surgery team at CHOP on Friday-- before this holiday weekend. If not on Friday, then it will be on Tuesday. Once she has been properly consulted, the general surgeons will try to find some room on their schedule. It should be a week or so. Then it is about a week of recovery after the surgery.

And that is our current plan.

And I have no idea if any of that made sense-- I've had about 2 hours of sleep in forever :) That might be an exaggeration. Maybe.

Wednesday, September 1, 2010


Miss Charlotte has been having a rough time adjusting to life at home over the past week. We've dealt with poor feeding (she will no longer take anything from a bottle), desat'ing during tube feedings and a racing pulse. Poor little baby is just having a hard time figuring out where she is and what she is supposed to do.

Her doctors have discussed monitoring her at home (with the home health nurses-- our current plan), or direct admitting her to the PICU at Chester County, or, my lease favorite option, direct admit to CHOP.

I know we've asked and asked and asked, but if you could keep Miss Charlotte in your thoughts and prayers over the next few days, that would be great. I know she is capable of being home-- I know we are so lucky that she is doing as well as she is, and I know that this is just a bump on the road to recovery, and of course, that there will be many more bumps to come. But each bump hurts and it wears us out.

Thanks. Miss Charlotte is going to be A-OK. We're just trying to figure out how to best help her get there.