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Sunday, April 26, 2009

Sunday Sustenance

“To laugh often and much;
To win the respect of intelligent people
and the affection of children;
To earn the appreciation of honest critics
and endure the betrayal of false friends;
To appreciate beauty,
to find the best in others;
To leave the world a bit better,
whether by a healthy child, a garden patch,
or a redeemed social condition;
To know even one life
has breathed easier because you have lived.
This is to have succeeded.”
- Ralph Waldo Emerson

Sunday, April 19, 2009

Sunday Sustenance

"Do all the good you can,
By all the means you can,
In all the ways you can,
In all the places you can,
At all the times you can,
To all the people you can,
As long as ever you can."
- John Wesley

Friday, April 17, 2009

All is well...

Bella Baby photo shoot - April 14, 2009

Connor's been making a smooth transition from the hospital to home... sleeping lots, eating lots, messing diapers lots.

He loves his swing and rides in the car (as long as it's moving!). Enjoys sacking out on the couch with Mom & Dad... been doing lots of that!

We've pretty much got a handle on his meds schedule... out of 8 feeds a day, he is dosed at least 1 med for 7 of them. Bloodwork on Wednesday showed his sodium levels maintaining. Pediatrician says he's already gained 2 ounces since coming home... yep, we'll be keeping him on his toes!

You'd think that once we left the NICU with him, that would be the end of it... but his nurses and doctors have all been so sweet to call in and check on us. While we don't miss the nightmare of having a baby in the NICU, we really miss the wonderful people who cared for Connor over the past 4 months. They all became a part of our family. It feels so foreign not having to schlep back and forth to the hospital every day.

Next week will be busy! Auntie Lyn (one of his primary nurses) is coming over for a photo shoot... a friendly "house call" if you will. :) He has appointments with his endocrinologist, gastro-enterologist, hematologist, and pediatrician, as well as another VCUG and renal ultrasound. Mommy will need to be committed after Tuesday's schedule of appointments! Grandma Rogers arrives on Wednesday.

Brian and I are also doing well... very tired, but we can't complain!

I have more pictures to post, but right now the beast needs to eat.
More to come...

Bella Baby photo shoot - April 14, 2009

Wednesday, April 15, 2009

Oh happy day!

It's been a blissful 4 hours so far...

He's FINALLY home!

Just settling in and getting used to our new normal...
we'll post more details later!

Tuesday, April 14, 2009

Connor's NICU Timeline

While Connor was in the NICU, I kept a running status list of his current developments listed on our blog, in the sidebar.  The brief status updates served those who were checking in on our blog, more often than I had time to update.  Reading through it now, it's a synopsis or a timeline of his eventful 120-day stay in the NICU.  This is that list (in reverse order):
  • 04/14/09 Sodium starts at 147, ends at 146. After a 120 day stay, CONNOR COMES HOME!
  • 04/13/09 IV fluids stopped. PICC Line #3 pulled. Suture sticks removed by surgeon. Continued weight gain.
  • 04/12/09 First Easter. 8lbs, 6oz / 19.88" Still on IV fluids. Discharge Monday night or Tuesday.
  • 04/11/09 Gains another 3 oz. Still on IV fluids. Discharge hopefully on Monday.
  • 04/10/09 Starts IV fluids, sodium & potassium levels begin to stabilize. Gains 3 oz back. Discharge hopefully Easter Sunday or Monday.
  • 04/09/09 Connor loses nearly 7 oz. Discharge for Good Friday CANCELLED. Completely dehydrated. Switched from 24-cal formula, back to 22-cal.
  • 04/08/09 MRI. Mommy & Daddy sleep-over.
  • 04/07/09 Photo shoot with Harriet
  • 04/06/09 Antibiotics all done!
  • 04/04/09 Nurse says he's home WITHIN THE WEEK... by Good Friday!!!!!
  • 04/04/09 Feedings are all PO Ad Lib. IV nutrition stopped - PICC line now hep-blocked. 8 lbs, 8 oz.
  • 04/03/09 Nurse says he could be home in 2 weeks... 2 WEEKS!
  • 04/03/09 So far so good... nasal cannula gone, nearly all feeds today PO, up to 70 ml per feed. IV nutrition modified to wean.
  • 04/01/09 Over 4000 grams! 8 lbs, 13 oz. Up to 60ml per feed and occasionally takes entire feed by mouth.
  • 03/31/09 No cannula for 17 hours. Up to 50ml per feed.
  • 03/30/09 8 lbs, 8 oz. / 19.7"
  • 03/29/09 Up to 30ml per feed. Moving back to the step-down side tonight!
  • 03/28/09 Third day of negative cultures! PICC line #3 good to go after 3 attempts over 6 hours.
  • 03/27/09 Off CPAP, back on nasal cannula. Feeds restarted today. PICC line #3 insertion FAIL.
  • 03/27/09 Second day of negative cultures... so far so good!!
  • 03/26/09 First day of negative cultures... 1 more to go!
  • 03/26/09 They're calling it sepsis...
  • 03/26/09 Connor put on CPAP machine, blood gases a little off, this is to help with the bradys/desats. Completely NPO.
  • 03/25/09 Bacteria found in blood & urine, PICC line pulled, lots of bradys/desats
  • 03/24/09 Connor develops major infection - gram negative rods in bloodstream
  • 03/23/09 Discharge plans begin!
  • 03/20/09 Bottle feeding EVERY feed, 50% PO / 50% NG
  • 03/19/09 VCUG shows no reflux
  • 03/17/09 Connor moves to the step-down NICU!
  • 03/16/09 7 lbs, 13 oz / 19"
  • 03/16/09 Bottle feeding 3x/day, 45 ml/feed
  • 03/12/09 Bottle feeding begins again - 2x/day
  • 03/11/09 Newspaper photo shoot & video swallow study (inconclusive)
  • 03/10/09 Officially over 7 lbs!
  • 03/07/09 Bottle feeding stopped - all feeds by NG tube
  • 03/06/09 Desatting issues - back on nasal cannula
  • 03/03/09 1st time feeding from a bottle EVER, 1st time w/ breastmilk since Christmas
  • 03/02/09 2nd attempt at feedings
  • 03/01/09 6 lbs, 1.5 oz / 18.9"
  • 02/28/09 Off the nasal cannula and breathing 100% on his own!
  • 02/27/09 ROP officially regressing
  • 02/26/09 Extubated and in a swing!
  • 02/24/09 1st attempt at feedings - unsuccessful
  • 02/23/09 5 lbs, 6 oz / 18.75"
  • 02/22/09 Surgery #3 - Laser Eye Treatment for ROP
  • 02/21/09 He POOPED!
  • 02/16/09 Surgery #2 - Remove ostomies and reconnect intestines
  • 02/13/09 Eye Exam - ROP, Stage 3/Zone 2 with early Plus disease in both eyes
  • 02/11/09 Cranial Ultrasound - IVH much improved! L - nonexistent, R - negligible
  • 02/09/09 Postponed - Surgery #2 to reattach intestines, due to possible infection brewing
  • 02/04/09 Connor is officially over 4 pounds! (4 lbs, 2oz)
  • 01/30/09 Connor graduates to an open crib!
  • 01/23/09 Wound Vac removed! Mommy gives Connor his 1st bath since birth
  • 01/16/09 1 MONTH OLD
  • 01/14/09 Eye Exam - ROP, Stage 2/Zone 2 in both eyes
  • 01/13/09 Connor switches from the ventilator to the nasal cannula
  • 01/09/09 Connor develops major UTI w/ E Coli in blood - gram negative rods found
  • 01/06/09 Wound Vac installed due to incision deteriorating to open wound
  • 12/31/08 Surgery #1 - 20 cm of intestines removed due to NEC, given 2 ostomies
  • 12/26/08 Connor develops NEC, put on ventilator
  • 12/22/08 Connor rolls over in front of Daddy & Grandma R.
  • 12/21/08 Cranial Ultrasound, IVH discovered - R Level III, L Level I
  • 12/20/08 Mommy holds Connor for 1st time
  • 12/19/08 Mommy able to see Connor for 1st time since birth
  • 12/17/08 Daddy holds Connor for 1st time
  • 12/16/08 Connor born at 9:43pm, 13.75", 2 lbs 6 oz

...anxious anticipation...

Connor gained weight AGAIN last night. :)

Surgeon came yesterday and removed the sutures
that have been sticking up from his belly.
Saved us an hour trip as an outpatient to his office.
So glad.

Our favorite neo is on today... might just help push us out the door.
(He did say he didn't want to see us still there come Tuesday.)

TODAY might be THE DAY!

(I really don't want to be the girl who AGAIN cried wolf!)

Monday, April 13, 2009

119 days old...

Happy Easter! - April 12, 2009

Of course...
Today is Monday, and Connor isn't coming home today.

Thankfully, one of our favorite neos is back on his case today. So, Connor's fluids were finally stopped this morning, and his PICC line was removed FOR GOOD shortly thereafter. His neo has consulted with each of his specialists regarding his latest test results. His surgeon is supposed to stop by today to finish the job he started and address the sutures still poking out from his belly. His lab work has been completed.

I've completed all of my charts and logs, filed his paperwork, and put all of his appointments on our calendars. We.are.ready!

Looks like maybe... just maybe, TUESDAY will be the day!

We need to get his little boy home so our family hibernation can begin!

Although this upcoming calendar of events doesn't look like hibernation, there will be a few days here and there to finally laze around in our pajamas...

THIS WEEK:
  • GET THE BOY HOME!
  • Our only outpatient appointment will be his first visit to his pediatrician - just 0.5 mile away... I think we can handle that.
  • On Thursday, Auntie Lyn (one of his primary nurses) is coming over to do a photo shoot of Connor (gotta get those birth/homecoming announcements out!).
NEXT WEEK:
  • Monday will be our first real trek to see his endocrinologist.
  • We're anticipating a nightmare on Tuesday, with 4 different appointments lined up at Lutheran General (an hour away) - radiology tests - a repeat VCUG & renal ultrasound, the gastro-enterologist, and the hematologist. If the distance wasn't enough, he can't have any formula from 4:00am - 9:30am.
  • On Wednesday, Grandma Rogers comes to visit.
Praying super hard for no more delays... I don't think our hearts could take it.

Sunday, April 12, 2009

Maybe Monday??

Super quick update...

Last week, Connor was switched from 22-calorie formula to 24-calorie formula (Special Care). He'd been on this formula once before, prior to his last infection. Back then he started having super frequent and runny stools, which they attributed to his amoxicillin. Then he got sick, and once better, they started him up on the 22-cal formula (NeoSure). Early last week, his weight was beginning to fluctuate, so one of the neos decided to put him back on the 24-cal formula. And... he started dumping, again. Of course we brought this to everyone's attention, every time we changed his diaper it was mentioned to either his nurse or a doctor. We were told he just needed some time to adjust to the higher calorie formula and all would be well.

On Thursday night, after losing 7 ounces within 24 hours, we knew our dreams of a Good Friday homecoming were dashed. Connor felt lighter to us, his face was more gaunt, and his eyes were bulging a bit. This rapid weight loss greatly concerned the neo on duty, so Connor's electrolyte levels were checked, and sure enough - way off - and he was extremely dehydrated! Replacement fluids were started. After a lengthy conversation with his doctor, he agreed with us that the 24-cal formula was no good for Connor, and he was switched back to the 22-cal formula. (Moving forward, any adjustments to Connor's menu will be determined by his pediatrician and his GI doc.)

Hallelujah!

This latest curveball has been frustrating as all get out... not only because we had our hopes up for the Good Friday discharge, but we also realized that had his formula not been changed, he would have come home on Friday. We're so tired of celebrating his first holidays in the hospital.

The good news is that Connor's gained 6 oz. back since Thursday night. (Currently at 8 lbs., 5 oz.) He's still on fluids, until his sodium levels are back in check. He's eating like a champ, burping well, spitting up a bit, and his stools are normalizing. He will need to come off the fluids sometime tomorrow and gain weight tomorrow night to be ready for his "planned" discharge on MONDAY.

Luckily for us, Connor's had the A-Team of his primary nurses assigned to him now and through the weekend. It helps so much when the person taking care of him knows his cues, understands his parents, and seems to genuinely care about him.

Connor has follow-up appointments like you wouldn't believe (a few more specialists have been added since my last post), and I must admit, I'm feeling very overwhelmed. He has 9 different prescriptions, with a dose of something due every 2 hours - except for at 6pm and 4am. (Yes, Mom, we will be using timers.) We want him home so desperately, and yet I feel I will have no time to get everything medical-related properly organized. We're so ready to be his full-time caregivers... we've been ready for months. It's just all of this extra medical stuff that makes me want to find a padded room.

I know we can do this... mostly because we have to... but I'm feeling a little paralyzed at the moment.

(So I'm using my free time to write a blog post??)

Baby steps.

Sunday Sustenance

"He lives, the Savior and Redeemer of all mankind, whose Atonement came as an act of grace for the entire world. . . . He has done for us what we could not do for ourselves. He has brought meaning to our mortal existence. He has given us the gift of eternal life. . . . God be thanked for the gift of His Son, the Redeemer of the world, the Savior of mankind, the Prince of Life and Peace, the Holy One."
- Gordon B. Hinckley

Thursday, April 09, 2009

NOT a Good Friday

After losing 7 ounces at tonight's weigh-in, Connor will not be discharging tomorrow.

We're not sure when, and when we have more information, we'll post it here.

Thanks for keeping him (& us) in your thoughts and prayers.

Tuesday, April 07, 2009

113 days old...

Last full day on the cannula - March 31, 2009

Father & son - March 31, 2009

He knows the bottle is coming! - March 31, 2009

Passing his Car Seat Test with flying colors! - April 4, 2009

Smiling in his sleep - April 4, 2009

Dad and his baby "carrot" - still a bit jaundiced - April 5, 2009

The last of his wires and cables, tethering him to the NICU - April 5, 2009

Sleeping Cutey - April 5, 2009

"I want to hear more about this Easter Bunny fellow" - April 5, 2009

"Really? He brings me candy AND presents?" - April 5, 2009

"That's it! I'm coming home on Good Friday!" - April 5, 2009

Last Thursday night, we pressed his nurse for a time frame. Her best guess was two more weeks. While we weren't happy with the length of time, it was something we could hang our hat on.

Saturday morning, Brian went for the early feeding, and his nurse dared to mention the "D"-word...
DISCHARGE!

Not only was she talking about discharge... she was certain it would happen within the week!

Holy cow... WOW!

At some point in the last few days, Connor has turned a corner. He's a totally different baby. Saturday night, his nurse went to NG tube feed him, and as she's getting the pump ready for his feeding, he yanked out his NG tube. He got so upset, he wouldn't settle down until she put the bottle in his mouth. By Saturday morning, he went to PO ad lib (all feeds by mouth, whenever he's hungry). BIG step towards the door.

Since then, he's fairly consistently taken 2 ounces at each feed, every 3 hours. He always wants more than the 2 ounces, but as we've painfully discovered, his tummy gets overfull and must.empty.immediately. Sometimes we're quick enough, sometimes we're covered in puke. This will change in time, as soon as his stomach grows a little more.

His reflux seems to finally be under control. He still spits up easily, but his pain is a lot less. He's still sleeping on an incline, which we'll have to continue here at home.

His cannula was weaned completely by his nurse on Thursday night, and he's been doing great. Desats are few and far between, and usually occur only when he's upset and crying... just like any other baby.

He's lost a little weight over the past few nights, but that's to be expected since he's been weaned from his IV nutrition. As of 30 minutes ago, he's finished up his 14-day course of antibiotics due to the last infection. They will take a urine sample 48 hours from now to make sure that his UTI has disappeared. This sample will be cultured over 24-hours to see if it grows any nasty bacteria... we're hoping for a negative on Friday morning. That will be Connor's ticket to freedom!

He's got a busy week ahead of him... priority #1 is no more setbacks! He'll need to continue to gain weight, start some new prescriptions, and have a few tests run.

One of Connor's primary nurses (those nurses we love so much) has recently graduated with her Bachelor's degree and the school paper wants to interview her. She requested to have her picture taken with Connor, and we were more than happy to oblige. Oftentimes, these college stories will get picked up by the very local papers around here. So, tomorrow morning is another photo shoot for Connor!

On Wednesday, he'll have an MRI to follow-up on his IVH. We'll sleep-over at the hospital with him that night... all 3 of us, sleeping in the same room... sounds heavenly, doesn't it? Friday morning his PICC line should be pulled.

Connor will likely come home on 4 different prescriptions. But, he won't come home on a cannula, an NG tube, or a monitor.

Connor will have follow-up appointments with specialists up the wazzoo... he will need to see a neurologist, an endocrinologist, an ophthalmologist, a nephrologist, a gastro-enterologist (are there any -ologists I left off the list??), follow-up clinics at the hospital with therapists, weekly weight checks with his pediatrician, and likely home visits with therapists from Early Intervention. Luckily for us, the first appointments are scheduled for us by a social worker at the hospital. I just can't imagine trying to keep all of that straight right now!

Needless to say, we're a little swamped right now. Trying to get as much as we can done before we begin our hibernation.

For now we're praying so hard that nothing delays his homecoming any further - we can hardly believe this ordeal is nearly over. We're so ready to move on... to have our little family under one roof.

It's going to be a Good Friday!

Hurry home, Baby Boy...
I don't want you to miss Donald & Daisy's annual visit - April 5, 2009

Sunday, April 05, 2009

Sunday Sustenance

"Being happy doesn't mean
that everything is perfect.
It means that you've decided
to look beyond the imperfections."
- Unknown

Wednesday, April 01, 2009

April Fools??

Connor had to go back on the cannula around 7:30pm Tuesday night... he was desatting a little too long. He's still on room air for the most part, just needing the flow (forced air). He lasted about 17 hours without any assistance. Try, try again another day.

He's also having horrible issues with reflux. We can tell it's causing him a lot of pain... hurts us just as much to watch him struggle during and after his feedings. Hopefully his dosage of Reglan kicks in soon - he's been on it for 36 hours now.

We pressed the neonatologist that attended our Family Conference for a time frame... no dice. He's a conservative fellow - more reactive than proactive with Connor's care. We reiterated that we're not intimidated by the prospect of Connor coming home on oxygen or NG feeds or a monitor. All we were looking for was a goal, nothing to hang our hats on. At the end they asked if there was anything else they could do for us... I requested a parking space and a door pass... they thought I was kidding.

Still gaining weight like a champ. Tonight he was up 92 grams... now he's a whopping 8 lbs. 11 oz. I'm going to have to find him a new coming home outfit. He's completely grown out of the newborn wardrobe he never had a chance to wear (purchased while I was still pregnant).

Meanwhile, we're just trying to find our new "E" (as in an empty fuel tank).

April Birthday Wishes

We hope you have a wonderful day!


Our cutie-pie niece, Maddy, celebrates her very 1st birthday on April 9th.

Andi's "hulk" of a husband, Darrin, ages like a superhero on April 9th.

Who looks that good after having her 4th baby? Seriously.
Emily's turning 29 again on April 14th.

Sister Kristen,
Now the time has come.
We all know that you're not 21
No more... it's OK.
Because you're the big 3-0 on April 24th!

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