Baby J- Day 10- Awesome Day!

2weeks 3 days old.
Weight 2 lbs 1 oz - she has lost weight- but again she had a LOT of urine this weekend - including peeing through her bed on Saturday and Sunday so I think the weight loss is all water weight and could be due to the meds she is on.

It's a long post, but well worth the read.

Today my family and I went to Topeka to see baby Josephine.   My parents took my nephews (who I'm having so much fun seeing this week) to a local Children's museum type place and I went to do baby stuff.  First I met the KCSL people at the Social Security office.  it has been interesting trying to get Baby J a birth certificate and social security number.  We are trying to get her SSI so she qualifies for medicaid  She qualifies for SSI automatically because of her low birth weight.   It's been a complete mess.  They finally got a birth certificate and we thought we were going to get a SS # today.   We did not.  We are going on Monday when I'm back up there.   Such a mess.

However I then went to the hospital.   And so much has changed.  The first thing I noticed when I walked in is a different Ventilator

May not seem like a big deal- still a ventilator- but it's a big step down.  I was told that this morning Baby J basically made it very clear she was done with the other one.    The other one was breathing more for her and kind of made her vibrate.  They are working her off this one as well and they think if things keep going the way they are that she will be off ventilators by Friday.  The next step will be a CPAP (probably a bubble CPAP) which is just like what some adults use at night basically.   It will keep her lungs open so they can't collapse, but she will be breathing on her own really.   She is already down to room oxygen level which is 21%.   I guess she really isn't showing any signs of Apnea (when they stop breathing for a several seconds)  or Bradycardia (dropping of heart rate- happens with apnea) which is AWESOME.  Most premature babies this young are almost guarantee to have those, but she hasn't which is why she will probably get the bubble CPAP and not another kind.   I was so excited to see the other ventilator sitting in the corner and hopefully we can take it away and not have to go back to it.  She was on this ventilator before I met her and she just wasn't able to keep up.

Baby J's X-rays are also looking a lot better and improving everyday!!  They are also not really pulling up any new blood when they suction her, in fact they are getting less of everything now.

Sunday they increased Baby J's feedings to every 6 hrs and also went from 2ml to 4ml.  Today she is up to 5ml every 6 hrs.   She is still being fed through a tube, but that's ok.   If she continues to do ok with this amount they will increase it again on Thursday.

Today she was on her stomach when I got there and when they were getting ready to move her she almost rolled herself over twice.   While this was hilarious she is still connected to tubes in her mouth so it would have hurt her and not been very fun...though it was funny watching the nurse the 2nd time as the bed was open.   Oops.

Today she had an EKG to check her heart and the PDA again.  Keep your fingers crossed it went ahead and closed itself up.   Remember they only were able to give her one dose of the meds they could give her because of breeding on the brain.  I should find out more about that when I call tomorrow.

Monday the doctors looked at her brain.   Not all good news but not all bad news.  It appeared like the bleeds had not continued or spread any further  which is awesome news.   However they feel like they are breaking down and creating clots that are causing the cerebrospinal fluid  to get clogged.  This is causing her ventricles to grow.  Worst case scenario is they will have to shunt her brain to drain it.  They are going to continue to look at it weekly.  It's a wait and see game again.  What does this mean in the long run...who knows.  Lots of preemies still walk away from it unscathed.   But if it gets worse or it doesn't release the pressure and become unblocked it could be a cause of Cerebral Palsy which really could just mean some joint problems.   But Josephine is a fighter (literally at some points) and I'm hoping for the best.   Keep praying for her cause that seems to be helping tremendously.

SOOOOOOO the best part about today was a complete surprise to me.  I didn't think this would happen for another couple weeks and even at first was told it might happen towards the end of the week, but they decided Baby J was doing really well and I got to hold my baby for the first time.

 (please ignore the bra.)

I even held her for almost an hour.  Everything you read says you may only get to hold them for 10 min the first time.  The only reason they put her back in her bed was for the EKG.  She is so little and light.   But YEA.  And she did so well.  And now I wish I will be there before this weekend, but hopefully there will be many more leaps and bounds.

I also got her little outfits in today.

Those are sitting on my iPad if that helps imagine the size.

When I left, poor Baby J had just finished her EKG which was longer than expected and she was not happy.  She was moving all over the place and if she could make sound she would have been screaming.  You could tell she was crying.   Poor baby.  Oh the other plus to her improving is when they do 'torture' her she is receiving so much faster with her stats.  

So thank you everyone for your prayers.  They are working.  I know there will still probably be setbacks as there are with all preemies, but right now I'm enjoying our accomplishments.  Please continue to pray for Baby J because even though we appear to be moving in leaps and bounds, we are only moving forward.   She still has a long way to go.  Thanks for all you support.   Here is another bonus photo.