Don’t get my wrong, being home is great! I love not having to drive 45 min. to see my baby. I love being able to take a nap without a doctor or nurse coming into the room. I love not having an alarm go off because managed to a lead off her chest. I love not eating cafeteria food all of the time. But just because I am home does NOT mean that I get anymore sleep. Her feeding schedule is tough and very involved. Here is what my/our days look like:

• 12-1 AM: Mark feeds her (yes, feeding takes an hour)
• 2:20 – 3 AM: My annoying alarm goes off. I pump while I blog, then I get ready for the 3 AM feeding
• 3-4 AM: I feed Lyra
• 5:40 AM: My annoying alarm goes off. I start to warm up a bottle from milk I pumped at 3 AM. Then I re-set the alarm for 6 AM and pass back out.
• 6-7 AM: My alarm goes off and I used to pretend that I was going to do this feeding because Mark has to get ready for work…. I don’t pretend anymore. Mark does this feeding.
• 8:20 – 9 AM: My alarm goes off and I debate if I REALLY need to get out of bed yet. The answer is always “yes”. So, I get up and pump and get ready for the next next feeding. Sometimes I even eat breakfast while I am pumping during this round.
• 9 AM – 10 AM: Feed Lyra and give her the multivitamin (that causes her to spit up half of the time) and her inhaler (this is just for a few more days post opp)
• 10 – 11 AM: This is when Lyra normally likes to be awake and play. If I have not had breakfast by this point, it is a lost cause until after the noon feeding.
• 11 AM: Yet another alarm goes off.  Time for Lyra to take her Prevacid!
• 12 – 1 PM: Feed Lyra
• 1 – 2 PM: This is my best chance to get something done. If she is still awake, we play for a bit, but normally she falls asleep. I also normally try to eat something at this stage.
• 2 – 3 PM: Pump and get ready for the next feed.
• 2:50 PM: Normally Mark walks in the door from work. The angles sing, the baby smiles to her daddy, and I throw a little party in my head.
• 3 – 4 PM: If Mark is home, he feeds her and I pass out in the bedroom. If he isn’t, I feed her and try not to fall asleep while doing so.
• 4 – 5:30 ish PM: Lyra and I pass out together in the bedroom. If Mark is home, he finishes up his work in the living room.
• 6 ish – 7 PM: *Sometimes Lyra is hungry a little early for this feeding*. If Mark doesn’t have training her does the whole feeding while “cook” dinner. “Cooking” is a term I use very loosely. Sometimes it means order food for delivery. Sometimes it means I throw something small in the oven. Rarely does it mean using pots and pans. If Mark is training, I quickly eat dinner (read “throw something in a bowl and hope it is filling enough”)
• 7 PM – 8 PM: Play with Lyra if she is awake
• 8 PM – 9 PM: Pump and get ready for the next feeding
• 9 PM – 10 PM: One of us feeds Lyra. It really depends on the day and what we have going on. However, I always go to bed after this feeding and Mark often lays with her on the couch to catch a few Z’s.
• 11 PM: Lyra gets her meds again and we start the whole thing from the top.

There is no “weekend” schedule. There is no easier way to do it. This is what our daughter needs, so this is what we do. It is just….. exhausting. In three weeks we will re-evaluate with the doctor and see if she has gained enough weight at that point. If she has, we might be able to modify things a little. Until then, this is what we will do!

Lyra had rolled onto her side while I was pumping. Tyke was making sure she didn’t roll any more.

****Why it takes an hour to feed Lyra: First we change her. Every time. This helps wake her up if she was sleeping. Next, she takes what she can by mouth from the bottle. She has 20-30 min to do this, but she honestly is normally done after 10-15. Eating is hard and exhausting for her. She normally only takes about an ounce (30 mL- 40 mL) and than she is done. If we try to push it (and we have), she pukes. After that, we have to prepare the tools we need to feed her via the NG tube. We then check its placement, flush it, and feed her. She gets about 2mL/min. So, if she only takes 30 mL, we have to give 55 mL via the NG tube. This takes us close to 30 min. After that we have to clean the bottle and all of the tools used in the NG feed. All in all, it takes about an hour.****