Almost Home

Natalie had her feeding tube out when I got there.  She’s now taking 55 ccs supplemented with 1/4 teaspoon of formula 8 times a day.  The formula is to help increase her calorie intake so she will gain weight.  Today she was up by 1 oz.  Her nurse said they were thinking about sending her home on Thursday.  David and I have the option of spending the night in a room in the NPCN with Natalie still on monitors before she goes home.  The hospital does that so parents feel more confident about taking the baby home.  We’re trying to decide if we can do that or not.  Zach came down with a slight cough and runny nose this morning.  When I mentioned it to the nurse, she said they might want to keep Natalie a few more days to make sure Zach’s cold doesn’t become anything worse.  I’ll talk to them more tomorrow about it.

I met with Natalie’s OT again today and learned a little bit of infant massage.  We also talked about positions to hold her so her neck doesn’t flop down and cut off her airway again.  I feel better about it but I know David is pretty worried about her.  We’re just not sure what to expect when she comes home.  She seems to be a very tolerant baby so hopefully she’ll be the same way at home.

We also met with the Early Intervention Coordinator yesterday.  We came away from the meeting a little bit apprehensive.  We’d been told before that any therapy would be at no cost to us.  Yesterday, we were told that it would be billed to insurance and at a cost based on our income.  I came away from the meeting fairly confused as to what we’d be paying for so we’ll see.  The coordinator will come to our house next week and develop a plan for Natalie’s therapy.  After the plan is in place, they have 30 days to get help to her.

Prayer Requests:

• Praise- I finally got Social Security on the phone and I got to make a phone appointment to discuss applying for SSI instead of coming to the office!
• Praise- I got the taxes done!
• Pray that the social security/medicaid application will go through the first time
• Pray that Zach will get over his cold quickly and that none of the rest of us will get it.  There is a lot of hand washing and now orange juice drinking going on over here!
• Pray for our first night as a family of 5
• Pray that nursing and eating will improve at home.  I’m not producing quite as much milk as I should but the lactation consultant thinks the stress of the hospital and not having Natalie here is a big part of it.

I should have said this sooner but thank you so much to everyone who drove me to the hospital, have been taking the kids to and from school and for all the food we’ve received.  It’s been such a relief not to have to worry those things!

Amy