Finally coming home

It's been a week or so since my last post, and a lot has happened. As I previously wrote, we thought Lilah was going to come home late last week. I went to see her Thursday, she had been moved into the Continuous Care Nursery (CCN). It is basically set up just like the NICU, except they're not as monitored closely as the NICU babies. They also focus on getting all the proper things in order for the babies to go home. The neonatologist on call came in to talk to me and told me she wasn't going to go home until early the following week. She was definately well enough to go home, but there were many things I as her caretaker had to learn before I could take her home. He was extremely helpful, he sat down with me face to face and said ask me any questions that you might have, and I'll answer them the best I can. I really appreciated it because it gave me a chance to voice some concerns I had. As you all know I posted a picture of the goals she had to obtain before discharge and most of the goals that the hospital had to take care of were met, such as the Hep B shot, the car seat angle test and the hearing screen (both which she passed) All the other things were goals that I had to get done, and the reason why she couldn't come home last week, these things would take a little bit of time. One of the goals was to meet with a discharge planner. Since I wasn't at the hospital when she was, she called me at home. She is a really helful person to have around because she set me up with all the services I need. She set me up with a visiting nurse agency who will be coming to the house frequently after she is released to check her vitals, growth, to see how she's doing. They will also be the agency that will be sending out Physical Therapists and Occupational Therapists as she needs them. She set me up with the agency that will be supplying her oxygen called Apria. She also set me up with the Neonatologist who she will be going to for a follow-up appointment. His name is Dr. Rock. She called in all her prescriptions to a specialized pharmacy called Apocathary by Design. Her medicines have to be mixed at a compound pharmacy, they can't be mixed at a regular one. This was also a big reason she couldn't go home last week, her medicines would not be ready until Monday. I had to watch some DVDS which I got accomplished last week. I had to learn how to draw up all the medicines, because obviously they don't come in neat little syringes all ready to go like at the hospital, and I had to meet with Apria to learn how to run the oxygen tanks and transport them. It seems like a lot of stuff to learn but it's all pretty straightforward. When I went to see Lilah Friday, she was in the middle of her physical therapy and she showed me some exercises to do with her to loosen up her muscles, and to strengthen the muscles in her neck. She is already able to hold her head up pretty good so that's a plus. She said when she first started working with her her legs were always stiffened upwards, she wanted them to be more fluid. She started exercises to loosen them up, and she said she could already see a great improvement.

Fast forward to this morning I arrived there pretty early because this was the day I was supposed to get a lot of these goals accomplished. Apria was supposed to meet me at 3. The nurse was going to show me how to draw up the meds, and the car seat coordinator was going to show me how to install the base properly and transport the oxygen. She also had a head ultrasound scheduled and an echocardiogram. They had already done the head ultrasound by the time I arrived, but I was present for the echo. I had written in one of my previous blogs, that the chambers of her heart had not closed yet, so they wanted to do a follow-up. The cardiologist came in afterwards and said all but one had closed, so they wanted to see her in 6 months to check on that. The nurse showed me how to do the meds, and gave me the schedule for them. Again, pretty straightforward. Apria came in and taught me how to hook up the oxygen tank, and how to change it to the portable one. She showed me how to change the nose canulas and how often to clean them. I also learned how to attatch the oxygen sensor, which is basically a little band-aid type thing on the bottom of her foot that goes into the monitor, which will beep if her sats go below 90. She told me the large oxygen tank will last me six days, and when I get close to running out I have to order a new on which they deliver to the house. It has a little knob on the side that lets you know when it is getting low. Ahe warned me that I shouldn't travel with her unless I absolutely have to because these tanks are basically tiny missles, so the less I travel the less chance of an accident that could send one of these flying. I told her I wasn't planning on jetsetting around town with a newborn anyways. They can't see her being on it for much longer anyways. The neo doc came in and asked if I was prepared to take her home, because tomorrow was the big day! I said Oh I am more than ready. So I think that is all the up to date news. I will post tomorrow after I get her home if I am not preoccupied with her cuteness, and I am not too busy smothering her with affection ( :