Our First Update From Home

Charlie seems to be settling into his new home pretty well.
He has increased his feeds even more since leaving the hospital; he has fairly consistently taken 80-90 mL each time today. We're still fortifying his breast milk to make sure he's getting enough calories...but if his intake continues to stay around 80 mL per feed, we'll be able to drop that soon.

Charlie's home nurse came by today as well. She was happy with Charlie's vitals and stats, but did bring to our attention that we managed to get out of the hospital without Charlie's first vaccine. She's looking into it so that we can resolve that issue sooner than later. Charlie will have home health every other day for several weeks, then we'll re-evaluate his needs.

Little man also had his first at-home bath. Like most kiddos...he didn't really enjoy it. But his greasy, well-petted hair is now soft and clean once again.

Our only bump in the road since coming home has been the portable pulse oximeter. It's extremely finicky and the sensor only wants to work half the time. The result being that it beeps at us almost incessantly. Twice last night we administered oxygen to Charlie because the meter would not stop alarming. Neither time did we feel like Charlie's saturations were in a critical place, but we couldn't stop the alarm or in good conscience ignore it.

Pray that our uneventful weekend continues...it's the way we like it around here....

Welcome to the Outside World

On July 18th we were told by our son's medical team that "if every single star in the universe aligned perfectly, which they *never* do, you could take Charlie home in as little as 14 days" but that 21-28 days was closer to the average stay for babies with heart issues as complex as Charlie's.

I'm EXTREMELY OVERJOYED to report that just 15 DAYS after his arrival into the world....

WE ARE ON OUR WAY HOME!!!!

See that world whizzing by, little man?

IT’S ALL YOURS!

What A Difference Two Weeks Makes!

Late Night Update

Charlie made progress on his feeds today. He's increased the volume per feed which has made the nutritionist and cardiologist happier with his status. Mom and dad have received training on hooking up and reading a hospital grade pulse oximeter, inserting an infant cannula, and administering oxygen as needed. We've also now possess portable oxygen tanks, non-portable oxygen tanks and a oxygen condenser. Home nursing care has also been arranged as has an early intervention screening. The doctors ran some additional labs today and because Charlie's differentials came back normal the concern about his elevated white blood cell count has diminished.
Charlie is down to just his PICC line, pulse-ox, and monitor wires at this point. He's starting to look like a baby! At home he'll only have the pulse-ox still hooked up.

Dr. Huddleston rounded this evening again and said that if Charlie has an uneventful night that we will be discharged tomorrow!

So what did we do tonight to celebrate? We scrambled to clean up Charlie's room and move stuff around at home so we can accommodate all his equipment.

Pray for a night of good feeds, good labs, and good heart rhythms.

Maybe, Just Maybe

Early morning update:
Charlie's surgeon, Dr. Huddleston, has already been in for rounds this morning. He's very happy with Charlie's progress in feeding (took all 60 mL for each feeding last night) but would be happier if Charlie would wake up hungry on his own every three or so hours. This is a skill Charlie will have to learn - because of the IV nutrition and the continuous feeds through his NG tube during the first 12 days of his life - he's never actually figured out what it means to be hungry - he just assumes that food drips continuously into one's body....

Dr. Huddleston also said that Charlie's surgical scars look like they are healing appropriately. Unfortunately, Charlie's labs showed a slightly elevated white blood cell count which can be a sign of infection. He also ran a little bit of a fever last night although the nurse thought it was environmental because he was clothed and swaddled. They'll be monitoring that closely today and he's already been down to radiology for an x-ray to rule out pneumonia which is common in kiddos that have been intubated.

There is potential for us to be able to take Charlie home today. We will have a better idea as the day progresses. I'm trying not to get my hopes up for fear of them being crushed later on. But everyone agrees that we're skating close to that line where he becomes more at risk for infection IN the hospital than he would be OUT of the hospital.

Please pray that his white blood cell count drops a little today. Also, pray that all the equipment we need arrives and training can get accomplished. All those will add up to us being right on the cusp of bringing our little man home....

Pray, pray, pray....we're ready!

A Long Checklist

Charlie is still working at perfecting his bottle feeding. He has mastered the "suck, swallow, breathe" aspect but he wears out quickly. He is currently taking between 50-60 mL per feeding but his caloric needs are closer to 75-85 mL per feed. He's got to prove that he can handle the feedings and gain weight in order to be discharged. On that note, the OT said tomorrow mama can try to put Charlie ...to the breast for the first time to see if that entices him at all.

Charlie also successfully passed his hearing test in both ears, had an echocardiogram, and an EKG. Tonight he will attempt to pass his car seat challenge test, where he has to sit in his car seat for 30 minutes without having breathing, oxygen or heart problems (this insures he can tolerate the ride home).

Mom and dad checked CPR off the checklist (yay for already being certified!) and scheduled the arrival of oxygen tanks, an oximeter, an apnea monitor and home health care. Tomorrow will be a day of learning how to use all of the above.

Charlie is getting so close to coming home! There have been times in the past few months since his diagnosis that we wondered if we'd ever see this day...now we feel like we can see the light at the end of the tunnel.

Happy Birthday Mommy!

Charlie has had a wonderful 24 hours! In the middle of the night the doctor removed Charlie's arterial line. He still has his PICC line (long term IV) and a standard IV but they are no longer running any continuous drips. His heart monitors will remain hooked up until discharge.

He also had two gavage feedings through his NG tube of breast milk. The OT cleared him to start bottle feeding and he ...has rocked out two bottles of increasing amounts since lunch! If he keeps it up we will be able to take out the NG tube before we leave the hospital...

And as a special birthday present to mommy - Charlie got moved out of the PICU to the TCU (transitional care unit). This is his last stop before coming home! Over the upcoming days the hospital staff will train Matt and me on how to care for a medically fragile baby. Once they determine that we have a grip on Charlie's care we will be discharged!!!

Pray that Charlie continues to tolerate his feedings and raises his caloric intake. And please pray that Matt and I can get through our training with few bumps so that we can get to the business of being a family of five at home!