going home

today, we hit 26 weeks gestational age, trish was discharged and we came home.  i imagined this day would be full of exuberance with a lot of fanfare.  but how should we feel?  how should you, the person who cares enough to read these words feel for and about us and our situation?

Unfortunately, I don't know the answer.  I can tell you that I am anxious.  I feel like I should be with my kids, or at least under the same roof.  I know that they are in phenomenal hands and if anything were to happen they would call and I would be there 15 minutes later.  I hope that I will get there tomorrow to learn they are progressing through their goals efficiently.

I think I will need to learn that my kids are "sick,"  A couple NICU nurses have said that now, and I don't know why I dislike that word so much.  Probably because I don't want to believe it, I mean, they are just premature, or even "micro preemies" (a new term that I learned thanks to Google).  In my mind the tube down their throats helps them breathe, but it wasn't until the doctor saying the XRays show that have RDS, Respiratory Distress Syndrome, that makes them sick.  I can't say that its logical, but hey, the last couple days I have had many mental lapses, forgetting words and in some cases making up new ones.  But the machinery is becoming less intimidating as we start to understand what it does.

Because Grayons is "sicker" he is getting oxygen from an Oscillator.  This machine shoots puffs of air super fast but they don't fill the lungs. Grayson's lungs are so immature that cells that did inflate were over inflating while other cells weren't inflating at all.  The tower in front of the oscillator is several machines used to dispense all of the IV solutions and other drugs to him.  They have alarms that ring when they are finished with their dispensing or the medication is running low.

Scarlett is on a more traditional ventilator.  She is able to breathe on her own but needs some assistance.  On the monitor, we can see if she is doing all, some, or none of the work.  The top line shows the breaths.  If it is a big red line, the machine is doing the work for her.  If it is a big yellow line, she initiates the breath but the machine is assisting.  Smaller yellow lines indicate she did it all on her own.  If you can zoom in enough, you will see 10 breaths on this screen, 4 solo and 6 assisted.  The bottom right shows that the air they are using is 25% oxygen.  Normal air is 21% so she is close.  They told us she had some troubles last night and had to turn it up, but were able to get it back down today.  Grayson's machine doesn't have the same type of UI, but when we left he was at 34% oxygen, which is a great step for him because he has been more than 60% a lot!

We can also see the "Bili-lights" or Phototherapy lights used to treat Jaundice.  Their kidneys aren't mature enough to process the bilirubin but these lights will help them.

The colorful monitor here shows their heart rate, the oxygen in their blood, their blood pressure (measured through their umbilical cord), pulse, temperature, and respiratory rate.  They all have ranges set that will sound alarms if their numbers slip outside.  The goal would be for both of them to set the alarm off because their oxygen number is between 95-100.  Over-oxygenation can cause problems (that's why Stevie Wonder is blind) but in our case that can cue the nurses to turn the ventilator's oxygen down.

 Here we see they are lying on a Bililight pillow.  The shades are to protect their eyes from the light.  At their age they should still be in a dark place.  We can see their breathing and feeding tubes going into their mouths.  The colorful line inside the bag is suction.  They need to be able to keep the airway clear and can use the beads to help them see measurements and make sure they don't go too deep.  The silver heart holds a temperature probe to their skin. The bandage around his foot is the sensor that shoots light ad counts the red blood cells to give us his oxygen number.  Then he has two lines going into his belly button / umbilical cord.  One designed to take blood out and the other to get medications/fluids in.  I think the red sensor measure the amount of Carbon Dioxide in his blood.

This picture was taken to show how cute these guys are and to give some perspective on size.  Both babies were pictured with my wedding ring.  I put it in Scarlett's hand and she picked her arm up and let it slide down.  What can I say, she thought it was a gold bracelet!