Sunday Came and Went

Lydia is 7 weeks old today!  

Mom and Dad were supposed to take Lydia home today, but that idea came and went pretty quickly.  Wednesday we were told she would be discharged from the PICU.  Thursday we began the discharge planning.  Friday we were trained on G-Tube and Oxygen.  Friday I did my 24 hour Parental Care Stay and Dan did his Saturday night.  We decided to do them separately so we were both confident in ourselves concerning all of Lydia's special care.  I took Dan's truck home last night so we could come home together today.  Mom was going to take me to the hospital around 11am.  Dan called at 8:21am and said get here, they don't want to release her.  Not the news I wanted to hear, so Mom rushed down to Olathe to pick me up and take me to the hospital since I wanted to keep hope alive that she'd come home today and not be stuck with two cars at the hospital. 

Lydia is still doing great and her condition hasn't changed, in fact she's better.  Her breathing is a bit easier and slowing down and she's wiggling around like a healthy baby.  Best news of the day is that she's gaining weight, weighing in at 7 pounds 4 ounces!    

The ICU doctor this weekend hasn't been attending or seen Lydia in a while and she was hyper-sensitive to Lydia's baseline.  The concerns are her elevated heart rate, quick breathing, frequent spit ups through her nose which she isn't technically supposed to have happen with the fundo, and her upper airway issues.  Separately these are not concerning and the doctors are okay with it being her baseline, but put them all together and they can be concerning.  Say for instance she spits up, aspirates into her airway, does she or doesn't she have the lung and heart reserve strength to recover?  Well, we don't torture babies to test things like that!  

We know that it's better to be safe than sorry, but it's so sad that she is supposed to be asleep in her own bed tonight.  She was supposed to be all cozy on the couch with us tonight watching Food Network Star.  Luckily her heart surgeon was there today and came to talk to us and put things into perspective.  He said to look at it like this, it's frustrating and you just want her home, but in the grand scheme of her life, a little more time isn't a lot to ask to make sure she is safe and can have a life.  We've all worked so hard to keep her safe, you don't want to take her home and have something happen that lands you right back in the ICU.  

So tomorrow we'll find out more about Lydia.  Neonatal is going to weigh in on her baseline since they see more babies with g-tube/fundos and laryngomalacia.  ENT is going to weigh in on her airway.  Surgery is going to weigh in on her g-tube/fundo.  That is the critical piece.  They will insert a dye to see if and how badly it refluxes, this will determine if the fundo is working correctly.  If it was, we'll go down one path.  If it's not, we'll go down another.  Praying that either path leads us in a direction of safety first...then home.