HUGE News

Some of you may know that we received some huge news two weeks ago about Stephen.  I haven't unveiled our big news on the blog yet because I didn't want to jinx it, but now that it's right around the corner, I think it's time to tell everyone that Stephen is coming home!  His estimated discharge date is Thursday, March 3rd.  Fifty-eight days after being admitted to the NICU. 

It took awhile actually to get my head wrapped around the idea that Stephen was actually going to be coming home because everyone had expected him to be in the NICU for months.  We didn't think he he'd be home until at least April or May at the earliest.  But once again, he has proven everyone wrong!  And now that he's breathing completely on his own, the only two things they have left to do before we can go home is get his dialysis and feeding schedule set.  Stephen is still on 24/7 continuous feeds (feeding pump) and hasn't gotten to 12-hour dialysis "cycles." But since he doesn't need any respiratory support any longer, he's pretty close to a normal baby at this point.

So last week we started the process of learning how to really care for Stephen when he comes home and to prepare his nursery for his homecoming and all his equipment.  Preparations started with nephrology and training to administer Stephen's dialysis each night.  There is a machine called a cycler which does most of the work of dialysis.  We have to hook Stephen up to the machine each evening and it cycles the fluid in and out of Stephen's peritoneum throughout the night over the 12 hour period.  Then in the morning, we unhook Stephen from the cycler and he's free to go about his day as a "normal" baby.  The biggest thing with dialysis is preventing infection.  To do that, Bill and I will have to be super diligent about keeping his room clean, our hands clean, and never touching certain parts of the system.  Luckily, they have made the cycler pretty idiot-proof, so I think we'll be able to do it without too much of an issue.  We also learned how to give Stephen his meds via his g-tube, take care of his g-tube and replace it if it pops out.  This week is how to administer his injections and CPR training.

We spent a lot of time this weekend prepping Stephen's nursery, organizing things, and buying everything we need for a baby.  Healthy babies come with a lot of stuff, but having a special needs baby, is a whole different ballgame.  We get our dialysis supplies once a month, so it's a lot all at once.  Baxter actually delivered his supplies this morning.  I think there are eight boxes of dialysate, one big box of tubing, and one small box of connectors.  Then all the "little stuff" such as tape, gauze, cleaning solution, gloves, masks, etc.,  is delivered via Fed-Ex today or tomorrow.  Then we have the actual machine, his feeding pump and all it's supplies such as tubing and syringes, and then we have his special order formula and additives such as protein.  It's a whole lot of stuff to store in 1,100 square feet!!  But with some help from Bed, Bath, and Beyond, I think I've been able to find a place for most of his things. 

And most of my "free" time last week was spent dealing with insurance and Social Security.  Because of Stephen's conditions, he will qualify for disability and some special programs available to people on dialysis and for children who have spent greater than 30 days in the NICU.  But of course, all these programs require an insane amount of paperwork and time.  And as much as I'm so grateful to have private insurance, it is a HUGE headache!  You can only imagine what kind of charges you wrack up when you spend over 45 days in intensive care!  And no one seems to ever have an actual answer to any of my questions.  Ugh.  It's so frustrating!! 

But the best part of the weekend was spending some good quality time with my little man and hubby!!  Stephen is allowed a bottle and/or breast three times throughout the day so I tried again to breastfeed on Saturday and Sunday.  And Stephen did so great!  This time, he latched right on and Mama couldn't have been more proud!!!  Hopefully we'll able to keep that going and continue to bottle and breast feed a little bit when he comes home too.

Today's job....finding us a pediatrician! :)