Time for Dinner! and Update

**Michelle just told us that the spell last night was during a feeding, so it will not count.

I had a whole post typed out on my phone and it disappeared....sadness! Here's the short version:
HK took all of her feeds by mouth (except for one) from Saturday 2 am thru Sunday 5 am. She went from taking about half a bottle twice a day and needing some extra after nursing to full feeds! She was a rockstar! Sunday morning, she pulled her tube out part of the way, and Scarlett decided to go ahead and take it out since she had done so well. At her next feeding, Scarlett worked with her for 45 minutes and finally gave up and gave it through her feeding tube. She was protesting (or resting!) and continued to do so until Sunday night. We think she just wore herself out the day before.
She has now taken all of her feeds by bottle or nursing since 8pm last night. She's back to being a rockstar. :)
The nurse practitioner today said that if she continues to do well, we might go home at the end of the week. Her doctor just came on service this morning and came to talk with us today. He said she needs to go five days without having a spell (heart rate dropping) while asleep. She occasionally drops during a feeding, but he said that is normal. He doesn't want her going home and us or her pediatrician being worried about her dropping while she's asleep (that's not okay). I totally appreciate that! I am a little uneasy about suddenly going off the monitors and taking her home with nothing.
We have also asked several different people about how long to keep her "in" once we get home. We have been told anything from six months to two to three months. We were told definitely no church nursery for four months (this would be four months from her discharge). We are very thankful that we will be going home when the weather is warm and not during the winter or peak RSV season-it would be way longer! She got her first shot yesterday of the antibodies to help prevent RSV. It's $1500! (before insurance) She will get it again at least one more time. Obviously, we must be very careful to protect Hannah Kate from getting sick. It will be quite awhile before we are able to be out and about with her. Once we are, we will need to make sure people aren't touching her, getting in her face, holding her, etc. This is for her protection. Please don't be offended! It took a long time to get her here, and we would like to keep her as healthy as possible and avoid another hospital stay! One nurse practitioner told us that we should only allow grandparents to hold her. She said it uses calories for her to be held, passed around, etc. and she needs to use them to grow instead. We will have to be careful for the first year and then maybe we can be totally normal (is that possible?!). :) Thank you for understanding!

When Hannah Kate is home and we are semi-settled, we plan to have a private service for Rachel and Leah. We have debated about what to do so that it will be what we want and also not be too overwhelming. We appreciate your understanding as we try to do what is best for our family. Thank you to those who have asked-we really appreciate your concern.