Thursday, May 13, 2010

Jacob was discharged!

Jacob was discharged today and boy has it been a busy day!

I will post pictures tomorrow but Jacob is doing great and I am so happy! I have been so busy organizing medical equipment, supplies, getting feeds put up and meds organized. There is so much to do but boy is it worth it.


Jacob gets meds at 8am, 4pm and 12am

Aspirin- Mon.,Wed.,Fri. at 8am
Vitamin D- Mon., Wed., Fri. at 8am
Lasix (Diuretic)- Everyday at 8am, 4pm and 12am
Captopril (Blood Pressure)- Everyday at 8am, 4pm and 12am
Diuril (Diuretic)- Everyday at 8am

These meds are only until Saturday:
Clindamycin (antibiotic)- Everyday until Sat. at 8am, 4pm and 12am
Mupirocin ointment (antibiotic ointment)- as needed for skin

Jake is on gravity feeds at 9am, 12pm, 3pm, and 6pm
at 8pm I put up his night time continuous feed which is done by his pump.

Gravity feeds are done by hanging a suringe up higher than Jake. By gravity it goes down a tube into his g-tube. When done I flush it and that is that. It takes about 20 minutes for it to go in. I have to vent him before and after or he gets fussy and gassy.

For the pump I put a larger amount in the bag and its good until 12am. It goes in very slowly continuously. It runs over a 10 hour period but I have to change it once in the middle so its not sitting out that long. I put fresh milk in at midnight after his meds. The pump dispenses it slowly over that time. I took a class on using the equiptment. Its great because Jake sleeps through the night since he doesnt wake up hungry. I take it down at 6am.

Right now I am transitioning Jake to formula. He is on a 27 calorie diet. Normal formula is 20 calories so I have to do 7 scoops per 10oz of water. I will mix his daily amount in the morning because its good in the fridge for 48 hours.

I am also fortifying the rest of my breastmilk until its used up. To do this I do 3oz of breastmilk and add 2 teaspoons of formula.

He is on Similac Lactose Free formula since Aidan and I are both lactose intolerant.

So for now I am using half breastmilk and half formula. When I run out then he will be just on 27 cal formula so it will be MUCH easier.

Jake can't burp so I have to burp him by venting. It is easy, I just attach a empty suringe to his extension tube and any air will come out.

So Busy Busy but enjoying every moment. So nice having Jake wireless!

Please continue to pray for Jake and that everything will go well and he can go back to WV on Monday after his followup appt.

Thank you all and if I don't post for a while it is because I am so busy but I will try to update when I can.


  1. CONGRATULATIONS!!! I am so happy for all of you.

  2. This is wonderful news!! I'm SO happy for you guys!! Home Sweet Home!! =D

    Heart Hugs,
    Lauren (22yr. old w/Tricuspid Atresia, HRHS)


  3. Thats awesome. I remember bringing Ruthie home man was that nerve racking without her attached to any monitors. Good luck to you guys.

    Father of Ruth (HLHS post Norwood, waiting on a new heart)