A Restless Few Days

The past few days have been very restless. Jackson is still on 1/64 of a liter on his oxygen tank. It's amazing... he'll high sat most of the day but occasionally have an episode where he'll space out and drop his sats. He'll come right back up, but until he stops having those space out moments he's staying where he's at. I've talked to the nurses and the doctor about why they have decided to put him on 1/64 of a liter. Don't get me wrong. If Jackson needs the support, I want him to have it. I just don't understand why the decision was made to put him on it. All of the other parents I've talked to describe their babies' weaning progress to look like the following: high flow 2. Low flow 1 1/2. Low flow 1. Try the baby off of respiratory support. If it works, great. If not, low flow 1/2. Try the baby off of respiratory support. There is no oxygen tank. There is no 1/64. When I tell parents Jackson is on 1/64 of a liter they respond with "Why? Why so low?" and I have to respond, "I have no idea!" Granted, he is having those little episodes, but the other babies do too!! We've been told by people that occasional episodes if fine. He'll grow out of it. They won't send him home with him doing it. and yet, we're not weaning off the support because of it. Grr. I'm frustrated. Can you tell?

I'm also frustrated today because Jackson is 36 weeks corrected today. When you have a preemie, the doctors don't look at how many weeks he is actually (1 week, 1 month, etc) they look at his corrected age according to his due date. So for example, if Jackson was still inside me, he'd be 36 weeks today. It's frustrating because other babies I know that got to go home already were off support long before 36 weeks. My due date is in 4 weeks! I'm beginning to feel terribly worried that we will not be able to home by August 28 (my due date). I'm so sick of being in the hospital. I just want to be able to be like everyone else and bring my baby home. I want to be able to introduce Jackson to the cats,watch a movie with him on the sofa, get up at 2am to feed him instead of go to pump and call someone else to see how my little man is doing. I'm getting even more frustrated because the end is in sight (he's no longer on the vent, lol) and yet, we still seem so far away. I want his feeding time reduced (1 1/2 hour feedings to 30 minutes). I want him off respiratory support. I want him to be taking all of his bottles. I want him to start checking things off the "To Do before I go home" list so I can dewire my baby, see what he actually looks like without everything on, and walk out that sliding door of labor and delivery. Peace out Northside. I want to bring my baby home.

Current Stats:
Weight: 5 pounds, 3.8 ounces!
Respiratory: Oxygen Tank, 1/64 liter. Usually high sating. Some desats, generally recovers on his own.
Feeding: full feeds, increased to 37 cc every three hours. Friday: 18 cc bottle. 17 cc breastfeeding. Saturday: 21 cc bottle. (Ryan fed!) 7 cc breastfeeding (I'm not sure the scale was accurate because I felt like he got a lot more. Many nurses have told me that the scales aren't always accurate!)

Goals:
1. Keep on gaining weight!
2. Get off the respiratory support!
3. Take a little more every day on the bottle.
4. For me: learn to have more patience.
5. Our long term goal: GET MY BABY HOME! ( I know...I know... where's the patience?)

With love,
Anna