Sunday, March 22, 2015

1 week as a family

We survived a full week at home with both babies!  Both are over 10 pounds now!  As of Wednesday, Scarlett was 10 pounds, 4 ounces and Grayson was 10 pounds, 0.5 ounces.  Both are 20.67 inches long.  It is getting hard to squeeze them into 0-3 month clothes now so we are starting to wear 3-6 months.

I was off on Monday and we took both kids to the pediatrician's office so Grayson could get his "well baby" checkup.  Getting both kids, their infant car seats, oxygen tanks, and apnea monitors is no easy task.

On Tuesday, the home nurse came in and weighed both.  We learned that she will probably be out one more time, but apparently if the kids are doing well she won't stay on our case.  Trish's mom came in that morning to help so I could be at work.

Wednesday was another doctor's visit.  Scarlett had an ultrasound on her hip because during the delivery she went transverse and they want to be sure there was no damage.  Her hips look great!  They also had their first visit at the BPD clinic.  Again, both kids were given flying colors!  They also gave us permission to allow them to sleep through the night.  We are on a strict regiment to do care times (change and feed) every 3 hours, whether they are hungry early or too sleepy to wake up.  Scarlett was very bad at night, wanting to sleep and so those care times would last closer to an hour.  Then Trish would get about 90 minutes of sleep and try it again.  Grayson helped a little once he came home because his body knew when it was time to eat and has an extremely loud cry.

Speaking of crying, if I could translate their cries, it would sound a little like this:
Scarlett:  "Um, excuse me.  Is anyone there.  I have an unpleasant experience happening right now.  Hello?  If you wouldn't mind, I would love your help."

Where as Grayson's cry is more like: "HEY YOU, MILK PERSON.  GET OVER HERE AND FEED ME!  NOW!  THERE IS NO BOTTLE IN MY MOUTH YET!"

We have a plan to try and wean their oxygen.  We will go to the BPD clinic in 1 month and will try them on a flow of 0.1 liters/minute (they are currently on 0.3).  If that goes well, then they will try them on room air during the May visit.  We are hopeful to have them off oxygen by then but are prepared to spend the summer tied to the house so we aren't too upset if it is delayed.

The last thing we learned in the BPD unit was we should have a puls-ox machine too.  I am not sure who dropped the ball on that but we should have had that when we came home.  It was terrifying to go without it.  A couple times we walked past the oxygen machines and the tubing had popped off.  We would have no idea how long they weren't getting their oxygen and the alarm doesn't sound unless their heart rate dropped below 80 or their breath rates are really high.  I personally hold the person at Children's responsible because she should know better, but apparently the Medical Supply company told her that our insurance wouldn't cover both an apnea machine and a puls-ox.  The BPD clinic said they like for us to have both but some parents are overwhelmed.  Anyway, our wonderful Case Manager with Anthem is on it.  She spoke with the DME company and we should have one soon.

I don't know how useful they will be now, but transitioning home was hard.  We were rockstars in the NICU, involved in as much as possible.  BUT we weren't responsible for anything.  Anytime we thought we saw something different, we had a trained professional that we could check with.  At home, we are the only ones determining if they were working harder to breathe, if that cough is concerning, or if they were sleeping too much.  Plus we have newborn twins, and they have doctor's orders to feed them every 3 hours.  They can't eat until they fill up, but they have to eat a certain amount.  And there is two of them!

The start of this chapter is harder than we thought it was, but easier than the beginning of the book.  We are extremely grateful to have both our babies home.  We couldn't imagine life without them.  They are showing more personality every day, and we love them SO much.

1 comment:

  1. I never had any doubt you would do just fine. Even though you weren't ultimately responsible while the twins were in the hospital, you were learning and asking questions and getting yourselves ready to be responsible. When Sue told me a visiting nurse was coming to make sure the kids were being taken care of properly I ask why they would even THINK you wouldn't take wonderful care of those babies after all you have been through. Our prayers for you continue...I know God is watching over you and will give you the wisdom you need to care for and raise Scarlett and Grayson.

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