One Week Home

It has been a wonderful week. Samantha came home a week ago today, and I thought I'd give you an update on how she's doing and what our life is like these days.

Many people ask if she has to be hooked up to anything still. Thankfully, the answer is no! Part of the reason they kept her a bit longer at the hospital is so that she would not have to have a PICC line or anything else when she came home. In most respects, it's been just like bringing her home from the hospital the first time: getting used to feeding and sleeping schedules and letting Bethany get used to having her around.

Samantha is required to be on a special formula called Enfaport for eight weeks after coming home (so for seven more weeks from today). Basically, this formula does not contain any of the fatty acids that would be absorbed by her lymph system. The idea is to continue to give the leaky duct some more relief so that the leak does not occur again. We are very grateful that Jennifer found a family online giving away the rest of their Enfaport they had left over from their son's chylothorax (he came by his honestly: heart surgery). Our insurance company has initially denied the pre-authorization for the Enfaport, and we don't really have the energy to write letters and request reviews, so it is definitely a blessing to get almost half of what we'll need for free. The son's name is Luke, and he is a little boy on the waiting list for a heart transplant, so please pray for him.

Samantha goes in for pretty regular check-ups at our local pediatrician's office to check how her lungs sound and to weigh her. She's now gaining weight! As of yesterday she had gained about 3.5 ounces in four days, which is almost on track for average wight gain in an infant. This is a blessing for her mom and dad, because we are no longer required to wake her up every few hours in the middle of the night to feed her (she usually sleeps about six hours at night, which we are very thankful for!). She now weighs 8 pounds, 6.5 ounces; she was 7 pounds, 12 ounces at birth. So, she's still a bit on the skinny side, but she's headed in the right direction and should get that baby fat back in no time at all.

In addition to her check-ups, she'll go in for X-rays back at Primary Children's Medical Center within the next week or two, then again at the end of the eight weeks. If everything looks good after eight weeks, she'll be able to transition to regular formula and breast milk, of which we have a freezer full. And a friend's freezer full. Really. In addition, her immune system is getting back to normal, and we are able to take her places as long as she isn't held by everyone (sorry, Jennifer's eighth grade GO Group girls; I know that's no fun).

So, life is in many ways pretty normal these days. Jennifer and I are tackling all the things that we did not get to for the past month while Samantha was in the hospital and enjoying every minute we can with our wonderful girls. Bethany is SO glad that our family is back in the same house. She now sleeps in her "big girl" bed, and Samantha sleeps in the crib. Bethany is super-helpful, too. She loves to take Samantha's empty bottles back to the sink, and she gets a little too much joy out of helping to burp her baby sister by smacking her on the back. In short, we have gleefully and gratefully traded in the chaos of the hospital for the chaos of our home.

-Benjer