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

Kenji's first outing since the NICU

Kenji's been home for a little over 2 weeks now and has not been out of the house except for doctor appointments.  Today, we took Kenji to the 7th Annual FOT Golf Tournament Fundraiser.  If you keep up with our other blog, you know that Kenji was chosen to be the recipient of the fundraiser this year.  We attended to meet everyone and thank everyone for their generosity.  It's great to know that Kenji is touching many lives and that there's many giving hearts out there.  We felt so much like friends and family instead of strangers.  Kenji has brought so many great people into our lives and strangers near or far has became our friends.  

Here is Kenji with Hazel.  Hazel is first FOT Golf Tournament recipient.  It all started for her and has continued since.  She's an amazing little girl.  

Jeff, Jim and the whole Good Shepherd Church of Charlotte, no words can express our gratitude to you guys.

I'd also like to thank everyone who donated to our GiveForward fundraiser.  To my surprise today, I found out NBA player Ryan Gomes made a donation to Kenji.  WOW!  Just WOW!  **happy tears**

To seal the night, here's Kenji being semi good while watching mommy and daddy cook.

Lazy Sunday

It thunder stormed really early this morning.  We tried sleeping thru it but that didn't happen because it was more scary than claming.  

Anyways, it was a good day overall other than the nurse forgetting to but the back flow valve on again.  Kenji slept most of the day and it was a quite day in the neighborhood. 

Another bad experience

Kenji had a new nurse today.  We made sure she was fine with his fluid changes and all before we left him in her care.  Kenji took a nap and woke up about an hour later.  I then noticed blood had backed up in his lines all the way to the filter.  I looked and again, the back flow valve was forgotten to be put in.  I rushed him upstairs.  (By this time the nurse left already) I called our home healthcare provider but I got tired to getting the on call service and waiting for a call.  So, we took his lines apart and rehooked it up ourselves.  I hope this doesn't harm Kenji in any way because it will not be pretty if anything happens to him because of this.

Other than that, we had a good day today.  

Found Nemo

Kenji is finding his love for his stuffed animals :)

Busy Bee

Today's another busy for Kenji. He met with his surgeon this morning. Per his surgeon, his stoma looks great and that we're doing a great job caring for it. *pack on the back* Then as soon as we pulled up in the driveway, his OT was there. She tried doing some exercises with him but he wouldn't tolerate it. Although he did do some tracking while I was holding him. After his OT session, I tried putting him to sleep but he wouldn't settle down so I went ahead and changed his ostomy bag since it was starting to lift. He didn't enjoy it at all...like always. He finally settled down after being swaddled and took a nap till his Speech Therapist arrived. He slept for a good hour or two on his tummy after that. So yeah, he been up for a good amount of the day. I hope he sleeps well tonight.

Eye exam

Kenji's eye exam this morning went well. He was sleeping peacefully till he was awoken for his eye drops. He woke up screaming then calmed down after I held him. His results were good. There's no presence of ROP still since laser surgery. We won't see the eye dr again till 3 months. Yay!

1st at home PT session

Since being out of the NICU, today's Kenji's first PT home session.  He hated it!  LOL He enjoyed OT much more.  The only exercise he didn't mind was being on his tummy and being held like superman.

I'm wide awake

For some reason, Kenji was up the majority of the day today.  Auntie Salma and cousins Shameena and Shahan visited boo boo today.  His bag needed to be changed in the aftenoon and we tried a new technique hoping it'll last longer.  He also had labs done today.