The Blog You Don't Want To Write

Ok...so that title has got you saying what!!!!???

lets reccap the last 13 days.  Klara came home as you know and things were going better than we expected.  She has been moving quite a bit more, suctioning her VERY little, and things were starting to normalize.  Life was what it should have been (minus the feeding pump, apnea monitor, and suctioning machine {but life's not perfect})

So what changed..well last night (wednesday) klara started showing signs of increased suctioning and a slight cough. All of that increased through the night, so we decided we needed to take her to the Dr.  He did not like what he was seeing and hearing, so we were sent to CHOP's ER. 

While sitting  in the ER, (the timespan of a couple of hours) we actually saw Klara get worse..her numbers were dropping and her color was fading.  REALLY...CAN;T SHE GET A BREAK.

They decided they wanted to admit her to the NICU.
So here I sit in CHOP's NICU East Room 72 - only 13 days and 2.5 hours from the time we left CHOP's NICU East ROOM 72.  That's right...they actually kicked the other baby out of this room and gave it back to Klara...i guess she's got some pull around here.

What we know so far is she has rhinovirus. (at least they found a cause for this).  And from what they tell use things get worse before they get better..how worse..dont know..but for a normal infant (under 3 months) it can get bad...for Klara...who the hell knows. 

I will do my best to keep you updated...its easier to find the time when im sitting in a NICU...as opposed to trying to keep Lily from stepping on Klara at home...

talk to you soon.

WAIT TILL YOU READ THIS!!!

I know...i know...ITS BEEN FOREVER since the last post.  So whats going on.

Well first i want to explain myself...why we havn't posted anything since ____

Frankly b/c we got tired of posting some good news and then having to retract it a day or so later....that seemed to be the case...so the last we left it was.......

Klara was on NG feeds (feeding tube to stomach) and they were attempting to compress her feeds to 30 minutes b/c per our doc...THEY NEVER send a child home on continuous ND feeds....

A day or so after that post, Klara was fighting to keep her food down.  Had an increase in reflux and that led to an increase in suctioning.  THINGS WERE NOT LOOKING GOOD. 

So where were we to go then. The minute they pushed her feeding tube back into her ND (below the stomach) she was doing great.  NO refulux, Not much suctioning.  But like the docs said...they will not send a child home with an ND tube (very high risk if it were to get pulled out accidentally).  So where were we to go now..our hearts once again sunk...

All we wanted to do was get her home to grow and get stronger, since she was clearly showing signs of getting stonger...Moving her hands, feet and moving them purposefully too...to kick toys..etc.  So they what they wanted to do was to discharge her from the NICU to inpatient and let her grow...well THAT SUX we said.  She will get almost NO attention and we just cant live there...we got a LILY J at home...

As Klara begain to stabalize on continuous ND feeds, they were contemplating on sending her home per our constant badgering....so they began testing us.  Emily has been there EVERYDAY and while she is there pretty much handles all Klara's care.  So the nurses were like "i dont see why you cant take her home to grow..."  Long story short, through advocation, interviews, and training, the Docs agreed to let her come home...REALLY..CAN IT BE TRUE..

So in order to prepare her to come home, fearing the ND tube could get pulled back into the stomach, they decided to push the tube further into the next chamber and make it an NJ tube.  This would provide us with a little safety net incase the tube moved.   

A wise man once told me, IF IT AIN'T BROKE DONT FIX IT.  Once this was done, Klara began to fall apart.  She was refluxing stomach bile and they didn't know why so now there was no way we could take her home.  ONCE AGAIN OUR HEARTS SANK. 

After listening to the problems and putting ALL the pieces of the puzzle together, WE (mom and dad) convinced a nurse to talk to the Dr.'s about the timing of everything.  The docs took another film of her stomach and they decided the tube was pushed too low and it was putting too much pressure on her intestines.  

The decided to back out the tube 10cm's....and it was still in her jejutem (NJ tube)...NOTHING ON KLARA IS 10 CM...let alone her jejutem (third chamber of her stomach)...

Quickly Klara became very complacent and suctioning dropped considerably...and things were again normal....

So to recap...
Friday...Klara was coming home...pushed tube furthere.
Saturday..klara is not doing good..
Monday...Klara is not coming home
Tuesday..they looked her tube and backed it out Tuesday Night..
Wednesday..Klara is coming home Friday
Thursday...we need to get trained on Klara's equpment
Friday...Klara is discharging mid afternoon..

HOLY ROLLERCOASTER OF EMOTIONS AND ....

So that's it...Klara is HOME...and.....so far doing well.  A bit scarey sometimes...but hasnt needed much..she is on a feeding pump, and we do have a suctioning machine (which we are barely using).  She sleeps soundly and LILY annoys the bejeezus out of her when she's up...

Lily is such a big sister...loves to help and always wants to do what she can.  Couldnt do it w/o her...

Klara has been home for over 48 hours and we have all survived...the Plan, lets get her stronger and then we will be going back to CHOP to once again try NG tube feeds...thats the next step..Until then...we just enjoy having our BEATIFUL daughter HOME.  (both of them together)....

The light at the end of the tunnel....we hope.

So, a lot has happened since the last post.  Lets see if we can recap.


Lily celebrated her 2nd birthday.  We had a party for Lily.  It was a lot of fun but also heartbreaking not having Klara there with us. Hopefully we won't have too many more holidays or family events without her home with us.
  
Klara has continued to get stronger and BIGGER.  Little KD bug weighs 6lbs 3oz!  She is finally gaining weight consistently and filling out her newborn clothes.  She has also weaned off of her oxygen.  She did transition to an OG tube - so it is back in her stomach and has been for over a week.  They started her on continues feeds and they have been slowly condensing it.  They were able to condense a 3 hr feed to an 1 1/2.  Unfortunately they had to bump it back up to 2 hrs because she spit up a little too much last night.  She is still showing signs of refluxing but she isn't desatting or dropping her heart rate.  Our little trooper is doing a great job.  The docs plan to decrease it again tomorrow.  


What we are looking forward to-
If Klara continues to handle her feeds condensing her speech therapist is going to introduce bottle feeding next week.  Cross your finger.  We have been doing passy dips and Klara loves it.  
Also, IF Klara can handle her 3hr feeds over a 30 min time span then we will be able to bring her home.  Klara has impressed the docs over the past couple of weeks and they are excited about her continued progress.


The diagnosis continues to be unattainable.  All of her tests continue to come back normal.  The only thing that has come back abnormal is her muscle biopsy however they have yet to be alb e to find out why that is.  Her neurologist has recently ordered a new batch of genetic testing.  It could take up to 8 weeks to get these results back.  Her neurologists is also sending her files to a specialist at Oxford in England.  Who knew our little peanut would cause so many people to scratch their heads!?!  


We did find out that she was the topic of a recent presentation at CHOP and even with all of the doctors and specialists....still no answers.  


On a good note...her physical therapist is continuing to see progress.  Our Klara is getting stronger.  She is moving a little more.  She can swipe at toys with support at her elbo, she is beginning to coo and occasionally we see a little smile.  She is doing amazing.  She is amazing and we are finding our strength in her.  And Lily.  
We are also preparing Lily for her little sister coming home.  She was nice enough to pick out bottles the other day at the store and insist on carrying them around with her saying - Klara bottles....maybe someday they will be.  


Thank you again for all of your prayers and support.  Hope you all have a Happy Easter!