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Monday, March 23, 2009

98 days old...

Happy in our new digs - March 17, 2009

Nearly another week has passed, and we're still surviving!

His due date came and went.
I was okay as long as I didn't think about it too much.
That's healthy, right?

Please don't mind my mad writing skillz... I should have been in bed hours ago.

Tuesday, March 17th, was a big day for Connor - he got to move to the intermediate nursery! This means a little bit more privacy, though the neighbors are closer and a lot more vocal. We don't hear as many alarms on this side, which is even better - I can tolerate babies crying... even all 15 at once.

Each nurse carries more babies per shift on the new side, so he doesn't receive as much attention as he did on the Level III side. Brian and I try to provide the majority of his care during the day, hence this new set-up is not much different for Connor.

Currently, he's up to 55ml on each feed, and he's able to take 25-40ml by mouth each time (the remainder is NG tube fed). Yep, he's a rockstar and is now able to tolerate bottle feedings every 4 hours. His food is being fortified and thickened, to make it easier for him to swallow without aspirating. Brian and I plan for at least one of us to be there for his 8am, 12pm, 4pm, and 8pm feeds (his night nurse handles his 12am and 4am feeds). By the time we finish one feeding and get him settled back in bed, we have about 90 minutes until the next one. It's a lot of back and forth to the hospital, but he's worth it.

He'll be finishing up the last of his breast milk in the next couple of days. We really hope that the amount he did receive will be enough to give him the good start we wanted him to have.

When he finally leaves the hospital, for his entire first year, he'll have to be on higher-calorie formula for preemies. We'll have 2 options, Neosure or Enfacare (provided Connor's system agrees) - but they're both brand names - no Kirkland (Costco) formula for this kid! These elusive preemie cans, usually found on the very bottom shelf of some stores, are also only sold in "preemie" sizes (12.8 oz vs. the normal size 22+ oz). Naturally this formula costs more ($1.03/oz regular brand-name formula vs. $1.25/oz preemie formula) and they very, very rarely run coupons for it (if you ever see any, please send them my way!)

The tarnished silver lining with Connor being in the hospital so long, is that we'll have had at least 3.5 months of free formula and diapers. Yay for insurance!

With Connor nearly exclusively on formula now, the calcium, phosphorus, and billirubin levels in his system should start to normalize. They've been off for a little while, since he's been on IV nutrition for so long. He potentially will come home on medications to help regulate these levels.

Last Thursday, Connor underwent a VCUG to check to see if his past recurring urinary tract infections were caused by urinary reflux. Happy to report that he handled the test very well, and they did not see any signs of reflux. He's been on a low dose antibiotic for weeks now, to prevent another UTI. After this test they were able to stop the antibiotic... hallelujah! The medicine was causing him to have super loose stools, which in turn gave him a very severe diaper rash... he's in so much pain right now. Poor little guy!

We have another Family Conference on March 31st. At that time, we'll be having a serious discussion with his doctors about what he might be coming home on... he's reaching that point where he's stable enough, and we could be taught how to handle equipment and medical paraphernalia, that they will consider sending him home. Even if it's with oxygen, with an NG tube, with medications... we're game for any and all of it. So, maybe we have just another week and a half... we're starting to hold our breath. We just want him home.

If we crane our necks to look out his window, we can see a little daylight. Not gonna lie that the thought has crossed my mind to just grab Connor and make a run for it. But, we must be patient a little while longer...

Here's a video for the grandparents:
I'm not sure which is more annoying - hearing my recorded voice, or listening to his neighbor wail. We are praying that she gains weight again tonight and gets to go home tomorrow morning! (She did... YIPPEE!)




On Wednesday, Connor hits Day 100 of life in the NICU.
The nurses keep saying they want to do something special for him.
We suggested a going-away party.
Would be so nice...

Not sad at all to leave the Level III side - March 17, 2009

Settling in to his new spot with "Auntie" Lyn (one of our fav nurses)
- March 17, 2009

Learning to be expressive - March 17, 2009

A little more expression... Connor used to be so mild.
He's certainly found his voice! - March 17, 2009

Telling Daddy stories - March 21, 2009

When he's really sleepy... he only opens 1 eye - March 21, 2009

CHEEKS! - March 21, 2009

Father & Son - March 21, 2009

Thanks for reading our little blog, and sending such nice messages and comments our way. It really means the world to us that all of you care about our family and our little guy! Thanks again for all of your thoughts and prayers -we see them in action every day!

P.S. I'm getting ready to send out Connor's birth/coming home announcements. (No date yet, of course...) Please e-mail us your address - we'd love to send you one!

8 comments:

Name said...

Loved the video. He looks like a full-term baby now! And, he looks like his dad more and more.

Nice to see him so.

love,

Grandpa Rogers

Hayley said...

loved the video, he's such a little tough guy in it - no smiling!

i'm so thrilled he's getting so big & ready to come home. it'll be a lot of work, but you're up for the job. i'm sure it'll be so nice to have him home.

give that boy a kiss for me. i just love him!

Audrey said...

He is SOOO cute!! Congratulations on the wailing neighbor getting to go home.. that was a bit annoying! :) It's so nice to hear that everything is going so well! I'm so happy for you guys! I can't believe it's been 100 days and the end is in sight!! Go Connor!!

Kami said...

He's getting so big, his cheeks are the cutest thing! It is hard to be in there, soon enough, right?! You guys will be heading home.

veronica said...

Oh my goodness! He is darling! I swear he gets even cuter each day!

Nate and Kelly said...

I couldn't be happier for you!! So nice to hear there's a light at the end of the tunnel. And regarding the Enfamil coupons... if you sign up for their diaper bag/newsletter, you'll get a bunch of $5 off any product coupons. Here's the website:

https://www.enfamil.com/app/iwp//ConsumerRegisterLoadConsentInfo.do

Jiles Pfamily said...

he is so cute! i am happy he is progressing so well. i can't wait to meet him some day.

rae said...

Hey there... once he comes home, especially if he still needs tube feedings, see if you can get his formula covered by your insurance. You would need a script from the doctor and a letter of medical necessity. You could special order it from the pharmacy/ month (they won't cover it if you just buy it off the shelf but they might if you special order it... or at least a portion of it) Or if he needs oxygen or other DME it is possible that the DME provider could get it for you and do all the insurance processing for you. Good luck.

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