First Day in Progressive Care

Natalie’s new cubby is very nice.  There are two other babies in her pod of 4 but since they are both very small and in incubators, it was very quiet.  There are windows visible and the walls are painted yellow- both very helpful to keep a person from feeling like they are underground.

When I got there today, the occupational therapist was evaluating Natalie.  If I’m understanding correctly, she gave me quite of bit of good news.  Natalie’s eyes were normal for a term baby.  She’s able to make eye contact for a short time then her eyes look all around.  Her arms and legs were normal.  I asked for clarification on that several times because we’ve been told she had low tone in her upper body at birth.  She said the legs and arms were now the same.  The therapist said it was good that Natalie was able to bring her fist to her mouth for self soothing.  She tested her using a pacifier and said Natalie’s suck was very strong.  The only thing that was a little under-developed was her neck and head.  She has very little control of her head.  All of these things the therapist checked were challenges for all preemies and can just be a little bit harder for babies with Down’s.  The therapist said that she expected that Natalie would develop very close to normal milestones but could be slightly behind.  She gave me a few things I could do now to help strengthen her neck, arms and legs.  OT and PT will come work with her 3 times a week.  I’m not sure if it’s both or separate, though.  She also told me that Down’s babies sometimes have low sensory input so they like firm touch because it makes them more aware of there surroundings.  So, the ‘love pats’ that we gave Julia and Zach to help them back to sleep will need to be slightly heavier.

I nursed Natalie again today and she continues to improve.  She still took the bottle after.  The progressive care nurse said Natalie did very well with me feeding her.  She mentioned that Natalie’s current orders are 4 feeds by mouth per day but if Natalie continues to improve, they would change it to more times per day by mouth.  Once Natalie is able to drink as much as she wants for all 8 feedings a day, she will be able to come home.  On our first day in the NICU someone told me that when they ask for the car seat, discharge is close.  I still have no idea what that means but the nurse did ask me to bring in the car seat next time.  They want to test Natalie in it to see how floppy her head is in the seat.  She also said we had to watch 2 videos before discharge so we might as well do that now.  I don’t think that we are that close to leaving yet but it feels hopeful that they are starting to prepare us for that.  Also, she’s wearing the hat in today’s pictures cause her temperature was slightly cold.  Didn’t realize how used I’d gotten to seeing the hair!.

After leaving Natalie today, I finally made it to the birth certificate office.  It only took about 15 minutes!  I’ve been dreading this errand.  I need the birth certificate to get her put on David’s insurance and also to apply for Medicaid.  The social worker told me I can make an appointment with the social security office so guess I’ll try to figure that errand out next week. 

We found a possibly cool game to do with Zach and Julia today.  It’s called Beginner Dinner Games.  I found it at Brilliant Sky but I see it’s at familydinnergames.com too.  Our version is for 3-6 year olds.  I had decided to try and do a game night tonight so we felt more connected as a family.  This game is a box of cards you can pull out at dinner to make dinner ‘fun.’  Tonight’s card had a game called ‘Oven Mitt.’  We each took turns hiding something in the oven mitt and then the rest of us had to guess what it was.  David loved it as much as the kids.  It was good to see him having fun with them.  The box lists 4 ‘Benefits’ of playing the game.  Number 4 is ‘Encourages kids to eat their veggies and drink their milk.’   Now, how are they going to do that?

Amy