Prince of The Green Paci

Kenji has been crowned...LOL

Since Kenji likes to spit out his paci A LOT...Daddy added a stretchy strap to it.

Kenji was having a blast riding in his swing.

We love morning snuggles.  Kenji gets very intrigued at seeing himself on camera.

Full time Mommy.

So, as of Tuesday, I became a "full time" mommy to Kenji.  And as of today, it will remain that way bc our private insurance denied Kenji of having private duty nursing and so did Medicaid.  Before, I felt half a mom to him because he was with his nurses 16 hours a day.  Now, I'm with him all day & night(unless I'm out running errands).  I'm not complaining, I love it!  I don't even mind waking up in the middle of the night to change him.  At least I'm not waking up every 3 hours to make a bottle and feed him yet!  I do everything he needs me to now(minus labs).  

He wakes up so happy and good.  Sometimes I don't even know he's awake...LOL

He was being a good boy in his bouncy while I was getting his fluids ready.  I was surprise to see him reaching/touching his toys.  PT & OT sure is paying off.

See him in action!

Then he was being a good boy again doing tummy time on my lap while I get ready.

Now...on to today!

Around 6ish, I was awaken by the sound of his monitor.  I did what I was taught to troubleshoot it then come to find out...the line for his Lipids broke and was dripping out fluids...so I hooked up a new tubing and we were good to go.  Then we woke up around 8ish to get ready for his Peds appt.  As I was changing him I noticed his ostomy bag was lifting so I went ahead and changed his bag too.  I got Kenji all ready to go and of course we were running late ;)  As soon as I arrived, his TPN monitor started to beep (OMG!)  And I couldn't get it to stop!  After about 15 minutes of trying, I was about to turn back home so I can change that tubing too bc my baby can not go without his TPN.  His sugar starts to drop immediately once he's off the TPN.  Luckily, it stopped after priming it like 10 times!  So, we saw the Ped, everything is fine...blah blah blah.  We came home, OT came around 12ish.  Kenji was not a happy baby since he hasn't napped all day. So OT ended short.  I changed his fluids, checked his blood sugar and went ahead and changed  his broviac dressing too.  Phew!  He slept pretty good here on out since he's been bothered and poked his whole morning.  That was a good thing bc I found time to paint my nails!  I think I earned the title "Super Mommy of the Day!"  LOL  Oh, and an update on Pittsburgh, we are shooting for sometime in December to go up for his initial transplant evaluation.

Trip to the park

What a beautiful day!  We took Kenji to the park for cousin Kylie's birthday party.  It was kind of windy so we didn't take Kenji out of the carseat/stroller but we had a fun day out...even though it was only for about an hour.  I can't remember if I bought him this green froggie outfit or someone bought it for him...but it's way to cute to go to waste.  So, I dressed Kenji up in it before he grows out of it.  PJs are so comfy but they do get boring...LOL

8lbs & 20in of pure cuteness

Kenji met with his GI Dr again today. All good news! Yay! Kenji now weighs 8lbs and is measuring 20in long. His labs were great! His bili level has came down since his last visit (3 weeks ago). That's great news! His bili was 4.something and is now 2.something! That means his immune system is getting stronger and a lower bili level means a healthier liver! We will only see the GI on a as needed basis now. Also, GI says Kenji is in the perfect shape now to go to Pittsburgh so she will work on coordinating our visit there. Please continue to keep my lil man in your prayers.

7 months old

Kenji is now 7 months old (3.5 months corrected).  

I originally wanted to updated this blog daily to keep up with Kenji's growth and improventes but who told me that was possible being a mommy and wife?  lol  At least I tried.  

Here's a update since my last post.

As you know, Kenji's broviac was not drawing blood so on Saturday (10/12) we spent our day at Hemby's Children's Hospital.  We were there for them to flush Kenji's central line.  I was told the would put in a medicine to break up any clots in his line and will probably take up to 2 hours.  Well, that would be ok for a normal baby but not Kenji.  He can't be off his TPN for long as he doesn't maintain his sugar levels very good.  The Dr said they will have to put in a IV to hang plain sugar water for him while his broviac is in use but before they poke him...they will check to make sure his line is not drawing back first.  SoOo, they did and it was working again.  Good thing they didn't have to poke him or do anything to him but sucks we wasted more than half of our Saturday sitting in our room waiting for this and that.  Oh well...better safe than sorry.

Here is a pic of him in his hospital gown.

Sunday was play date for Kenji.  Baby Haiden visited us.

And today was another PT day, Kenji showed improvements.  He's more stable with head control and tracking.  His head shape is starting to even out too.  He's sucking his fingers more often now too.  And he loves tummy time...when he's not cranky.  

Such a sweet face!

Thumbs Up

So far, Kenji's had 3 OT sessions and 2 PT sessions.  I'll say it's paying off well.  He's sucking his fingers/hands more now.  He finally got a hold of his thumb today and sucked away.  They are wanting him weened off the paci.  Only bad thing is, he tends to shove his whole fist in his mouth before settling on his thumb.  LOL  Kenji was weighed today and he gained almost a pound since discharge.  He came home at 6lbs 13oz and weighed in at 7lbs 12oz today.  So, he's gaining about a ounce a day.  Not bad considering he's on 24 hours TPN/Lipids.  

I'm so happy I caught this on camera!

Priceless

Kenji's temp has been up and down today and he also has a runny nose today.  He's been extremely cranky too.  Despite all the crankiness, he did manage to smile and giggle a bit for us. 

His central line is still not drawing blood so no labs has been done this week.  We are hoping for an answer soon.  We also ran out of test strips and lancets to test his blood sugar levels and our private insurance or medicaid will not cover the brand we were sent home with so working on getting a new meter too.  **sighs**  Kenji's PT session today went well.  We're still working on shaping out his head shape.  As you can see in the picture above, that side is quite flat.  His bill for his NICU stay arrived today too.  It's a little over $1 million.  I'm surprise it wasn't more.

I wish Kenji is always this bubbly...LOL