Our new "normal"...

We have been at home for two days now. I'm not sure how long it will take for us to figure things out and be "normal" again, but for now our days are pretty much full of giving medications, pumping, working with Gracelyn to eat out of a bottle, gavage feedings, checking her heart rate, checking her capillary refill, keeping Mr. C from trying to "love" his baby sister too much, answering calls from the hospitals/medical supply stores/insurance companies...a little different from the way things used to be, but better because our family has grown from three to four.

She is such a beautiful mellow baby! She is so sweet! I could stare at her all day, if only there were time. All of her medical needs make her high maintenance, were it not for those, she would be the easiest baby. The first night home we set alarms to wake up and check on her, assuming she would wake us up first. We ended up waking up with the alarm, she was sleeping so peacefully. We woke her up to feed her and she slept until 8am. The past three nights have all been the same. We feed her at 11p.m., wake up to feed her at around 3 or 4a.m. and when she wakes up around 8a.m. The rest if the day she is like clock work, every three hours she lets us know she is ready to eat. She only gets fussy when she is hungry or has a dirty diaper. We are very blessed to have her be so mellow. With the stress of having to balance everything that she requires it is a huge blessing to have her be so calm and sweet. We had a scare the second night. We woke up in the middle of the night and checked her heart rate. It had a really strange fast beat. We called down to Primary's and they suggested we head to the ER at McKay. We worked through it with our Nurse Practitioner at Primary's. At this point it is difficult to see anyone in Ogden because no one has a reference point of what her heart does and what it sounds like. We will be meeting with her Doctor here in Ogden this week. We will also be working with a speech therapist every week to try and get her eating better. We have home care that will be coming in three times a week to weigh her and make sure that she continues to gain weight. When we left the hospital she was up from 6lbs. 12 ounces at birth to 7 lbs. 2 ounces. Right now she is on a diet of breast milk mix with a high calorie formula. We feel like she really is doing GREAT!

Mr. C is doing okay, he hasn't been feeling well and so we are having to keep him from getting to close. He isn't really understanding, he just wants to love her. Every time he changes his clothes or bathes we make sure he gets his mask on and we let him hold her until he is done. He has been an amazing help! Anytime we need something he is so willing to do whatever we need. All of a sudden he seems so big. Gracelyn is lucky to have such a great big brother.

Jeff and I are also doing okay, sleepy, but good. With only a few melt downs, of course on my part not Jeff's, we are getting by. Just trying to figure out a new "normal" for our life.