1st Bottle/Discharge Planning

As you can see by the title of this post, today was VERY eventful.
After 68 days of life, Jaime FINALLY had his first bottle. He had 24mls of breast milk, which equals an hour of his continuous feeds. He sucked it down like a champ! We were told in rounds to let him drink as much as he could up to 24mls twice a day, you guessed it, he drank the whole thing wanting more! Cayse is the one who fed him, I took photos and video. We were so proud of him, we think he was proud of himself, too, he seemed super happy afterwards. We're hoping he continues to do well with bottles!

Also rounds were actually eventful today. The bottle order was put into place because Jaime has officially been turned down to 2 liters. Right now, he's satting at 99% and is at 25% O2 on the high flow. They will probably take the high flow away from him tomorrow and put him just on nasal canula at 2 liters from the wall O2, providing he remains stable on 2 liters.
The next thing mentioned in rounds was closing Jaime's fascia. It has been decided that this will take place in 6 to 12 months. That's right, mom, he'll have his little pouch to the right side for a little while longer! :-( They are also waiting to circumcise him, as they want to do this in the OR because of the hemophilia...and because of how bad Jared bled after his. If they get an OR time before we come home, they'll do it, but if not, it will be done at the time of the fascia surgery.
Since it was decided that surgery would be postponed and that Jaime's feeds and O2 are going well, the next thing said by Dr. Crombleholme was "we need to start seriously making discharge plans." I, of course said "seriously?" And he said, YES! So, a few hours later, Julie, the discharge planner came to meet with me. We have all of the plans in place, now we just need Jaime to show us he can get to 1/2 liter O2 and that he can tolerate his feeds. They are not planning on a G-tube for him at this time. They mostly don't want to place one because it is a surgical procedure and with his hemophilia, they'd rather not. If he can't fully tolerate oral feeds, he may need an NG for a while until he does. We know his stomach can tolerate the feeds, it's more his endurance and respiratory status.
We DO NOT have a discharge date, baring any complications, it may be in July. Let's just put it this way, it was suggested that Tom bring Jaime's car seat back with him. The thought of bringing him home is both exciting and scary!!!
Next thing discussed was Jaime's picc line. The only thing he's getting in it is his Factor. Hematology is planning on discontinuing that, too. So, once that order is in place, which should be official tomorrow, then Jaime can have that removed, too.
Finally the last thing talked about in rounds was Jaime getting his 2 month immunizations. Cayse gave him those with Tylenol this evening, he's been asleep ever since. Ann woke him up for a little bit to assess him, we tried to feed him with a bottle again, but he wasn't awake enough. He took 1ml and closed his eyes again. He looks so sad, you can tell he's not feeling well from his immunizations. I remember that same look from when Jared got his shots as a baby. Jaime just fell back asleep in my arms, so I put him back in his crib, poor guy!

Speaking of Jared...he had his 6 year check up with his pediatrician at home. He's 55 pounds and growing like a weed. All checked out OK except for his vision he was 20/50 in both eyes. He will need to see a pediatric ophthalmologist before school starts. We'll have to see how all of that pans out when we get home. Wow, I just said "we" and "home" in the same sentence...WEIRD! :-)

Well, I'm off...Jaime has another nurse coming on, so I imagine she'll be peeking in on us soon!

Have a nice night...hopefully tomorrow will bring us more good news for Jaime! (Fingers crossed!)

Love,
Sheryl