41 Weeks

I really wanted to get a post out this weekend, but the news shifted like the snowdrifts that came through.  Our hearts palpitated over our love bugs as Friday discussions hinted about getting home as early as this week but Sunday revealing that would not be a possibility.

Grayson is 8 pounds, 0.5 ounces!  Scarlett is 7 pounds, 12 ounces!

Here are the updates in Chronological order:

Wednesday (2/11):

Was able to hold both my kids in skin-skin contact!  Grayson had an MRI and was eating like a champ on his first day off lasix.

Thursday (2/12):

Scarlett started struggling eating.  She loves her food but her body seems to be working too hard so she was sleeping through her care times and was being fed through her feeding tube.  This pushes her NICU departure further out because she needs to eat by mouth for 7 straight days.  

Friday:

Scarlett went back on lasix.  This puts the medical team in a tough spot about when we can eventually go home.  Generally when babies are on lasix, they need other nutrients supplemented because they pee out too much.  At a minimum, in the BPD unit they put them on Potassium Chloride.  The doctor doesn't like the idea of us having TWINS on OXYGEN needing LASIX and VITAMINS.  In addition to the logistics being tough, you also have to be extra careful and look for ANY sign that something is off.  The balancing act to get her to eat while off lasix can take months.  The only way they would send us home without her eating is to have a Gastrostomy Tube (G-tube) inserted.  This requires surgery and then there would basically be a port for us to poor formula (and blended foods if she needed it when she was older) directly into her stomach.  We are not there yet, but our options are basically:

1. Scarlett feeds appropriately off lasix.
2. They send her home on lasix (which it sounds like they don't want to)
3. They take her off lasix and send her home with a gtube so we feed her as much as possible and pour the rest into her stomach.

Also, we received Grayson's MRI results.  Unfortunately, he has Periventricular Leukomalacia (PVL) to go along with his Grades 3 and 4 Intraventricular hemorages (IVH).  Right now Grayson seems to act appropriately (comparing him to the milestones of a 1 week old well-baby) but the odds are he will have motor control issues and/or learning difficulties.

Oh, and Grayson started acting a little more tired off his lasix, but was eating well still.

Sunday:

Grayson went back on lasix.  See Friday's comments about Scarlett and apply them here.

Today (Monday): 

Scarlett's lasix were discontinued because her electrolytes were way out of whack.  We did an echocardiagram because Trish asked at rounds when the next one would be and they realized the last one was exactly a month ago.  And the echo revealed that....  HER HEART IS HEALED!  Her PDA is closed and she no longer has any enlargements!!!  She does still have a Patent Foramen Ovale (PFO) but so does about 25% of the population.  Praise God!!!

So where does that leave us?  We are doing our Infant CPR and NICU discharge classes on Saturday.  Both are pre-requisites for us going home.  The conversation has shifted from "next week or so" to "in a few weeks."

Grayson before eating,

 and after.

 Scarlett before eating.

and after.