Jason: November 2003 Archives

We're finally getting settled in and into a routine. As Jenn said, Matthew's on nine medications which vary in dosage and frequency throughout the day. We got eight trays and a large supply of syringes so that I can prepare 24 hours worth of medications and feeds at one time. We also got a refrigerator for Matthew's room so that we don't have to go downstairs in the middle of the night to get his food or medication. Until Matthew gets his days and nights straight, I'm taking care of the evening feeds through midnight and Jenn's taking the night shift so that I can sleep before work. I'm certainly not getting full nights sleep, but I'm not getting anywhere near as little sleep as Jenn is. Jenn got a total of five hours of sleep during the first two nights Matthew was home.

Matthew's getting more comfortable now too. He's getting used to the sights and sounds of our house and is definitely less fussy now than when we first got him home; I think he's finally realized that we're not going to be poking and proding him every time we pick him up.

I wish the hospital would get their story straight. One of the nurses called Jenn this morning and asked if she had everything ready for Matthew to come home, because he's coming home TOMORROW!!! Holy lack of notice Batman! They're trying to get his oxygen installed today since that has to happen before he can come home. If that can't happen until tomorrow, his release may get delayed until wednesday.

Matthew's getting better at feeding from the bottle. He generally takes about half of his total feeds each day from the bottle and usually takes at least one whole feed from the bottle each day.

He's finally past the 3175 g (7 lb) mark, and growing regularly. He's putting on an ounce or two a day. He's getting a lot stronger too. He can hold his head up for longer periods now and is getting good at pushing himself up with his legs when he's laying on your chest. He's also able to move himself around his crib. The nurses regularly find him in different parts of the crib after laying him in the center.

We're currently planning on thursday as his release date, but we need to talk with the new attending who's coming on today. We'll keep you informed as we know more.

Well, it turns out Matthew won't be coming home on friday after all. It turns out no one bothered to inform the attending physician (who is the one who actually has to sign the discharge order) that friday was the day Matthew was going home. He doesn't think Matthew's quite ready to go home yet, so it's been delayed until early next week at the soonest. We're honestly a little relieved since he still has trouble with his feeding and because we still have so much to do to get ready for him.

We did have some good news today. Matthew took his entire noon feeding (now 62 ml) from the bottle in about 15 minutes. He was WIDE awake at noon which is probably why he was able to take all of it, but it completely exhausted him. He slept straight through his three and six o'clock feedings before waking up around 6:30 or so.

Matthew's coming home this friday! We're very excited, but pretty nervous about it as well. Plus, we've still got a LOT to do before he comes home:

• Learn about all his medication (he's on about 8 different ones)
• Learn to put in his feeding tube
• Learn to use the haberman feeding bottle
• Have the oxygen tanks installed at home
• Find a pediatrician
• Install and have the carseats checked out
• Nair the cats
• Finish cleaning the house
• etc.

He will be coming home on oxygen and a monitor (for when he feeds). He's fine (and doesn't need to be on a monitor) most of the time, but he still forgets to breathe sometimes when he's feeding from a bottle. This causes him to choke which freaks him out and he drops his heart rate (and O2 saturation) pretty significantly. It's not always immediately apparent by looking at him, so we requested that they send him home with a monitor until he gets better at feeding from a bottle.