4-28

Penny - 2660 g  (5 lbs 13.5 oz)     Lydia - 10 lbs 4 oz

Thanks for the patience with the delay in updating.  We had such a great visit with Jonathan home and are looking forward to the next couple of weeks going by quickly so that he can come home again.

Penny has continued to improve after her little spell.  She's now on 3.5 liters of flow and 21% 02 and doing well with that.  Her Co2 this morning was 50 which is the lowest I've ever seen it! She's also doing well with her bottle feeding.  The doctor has ordered that she only be allowed to bottle feed when her respiratory rate is below 60 so that she's not working too hard and burning more calories than she's getting.  It's such a delicate balance!  She had been getting donor breastmilk to try and help with her lung health but was losing weight on it so they've switched her back to a high calorie formula.  She's slowly picking up some weight again so that's a good sign.  New in her day planner are regular dates with physical therapy, occupational therapy, and speech therapy which is great news to me because I'm getting more and more concerned about her development delay with her being in the hospital for so long.  Lydia gets so much stimulation and Penny just can't in her situation.  I know she'll catch up eventually but it just makes me sad.  Anyway, the point is, I'm glad she's getting PT and OT.  The most frustrating part is that while she was having trouble last week they did a nasal swab that came up positive for MRSA staph.  It wasn't an infection and since then she's been in precautionary isolation which means that everyone who goes in her room has to put on a sterile gown and gloves.  This means that she's getting even less attention from people who would normally have just stopped in for a visit before.  The good news for the day though is that she's had one negative nasal swab and if she has one more she can come out of isolation! As the Patient Care Coordinator said..."think negative!"

Little Lydia is doing better after a few days of super fussiness.  Immunizations, reflux med change, and an upset tummy make for lots of crying. Fortunately her daddy was here to love on her.  Unfortunately lovin on doesn't prevent diarrhea or the diaper rash caused by it so shes still dealing with that. Its most likely some kind of virus that should pass in a little while. I'm just glad its not a reaction to the food thickener that has made such a huge difference in her eating and spitting up.  We don't want to go back to those days!  But these days she's spending alot of time in her birthday suit to air out her booty and that is extra cute!

Speaking of cute, I've gotten a precious social (non gas related) smile out of both of them!  Just melts the heart.

Speaking of hearts...mine was having a hard time going to sleep last night and just started praying and the praying turned into a poem which may eventually turn into a song....so here it is.  In the raw

I could never find a way to say
How grateful that I am for every day
And every miracle that you have sent
But father here I am to ask again
Please be with her tonight
Please make all that's wrong alright
Please let her know you're there
With miracles to spare
And love she'll never know the end of
Please calm her little soul
Please let me watch her grow
Into the woman you made her to be
Please

You know more than me
how a child in agony
Can make a parent turn their face away
But I know just like you
That this story isn't through
And you hear every single time I pray

Please be with her tonight
Please make all that's wrong all right
Please let her know you're there
With miracles to spare
And love she'll never know the end of
Please calm her little soul
Please let me watch her grow
Into the woman you made her to be
Please

 Penny and her Daddy

 Mommy and her Penny

 Sassy little thing

 Lydia going on a walk 

 Lydia and one of her biggest fans...her Great Aunt Linda