11 and 37

I apologize that I have let a week go by in between posts.  I wanted to post over the weekend but life got in the way.  At home we celebrated birthdays, replaced a water heater, and battled sickness.  Additionally, we are still getting in the groove with the longer commute.

The twins are now 11 weeks old, and 37 weeks gestational age.  We are loving the perks of being at main campus but still miss our old nurses.  The biggest difference (other than the commute) is the sheer number of resources.  For example, when our kids had their heart issues at Riverside (Scarlett's SVT and Grayson's Pulmonary Hypertension), we did EKGs and echocardiograms that were sent over to the main campus to be interpreted.  Their doctors spoke with ours.  Here, the doctors are physically examining the babies, and talking directly with the nurses. practitioners and doctors about what they've observed.  We also now have the ability to see our kids almost 24 hours/day through cameras at their bedspots!  They look a little something like this:

Grayson:

Scarlett:

Our biggest update of the week is about Grayson.  As you know, the pulmonary hypertension diagnoses is what propelled our move to main campus and then earned our way into the BDP unit.  Our plan was to have him on a CPAP pressure of 8 and make sure he stays highly oxygenated (constantly at 100%) for 2 weeks to see if it went away on its own.  If it didn't, we would discuss medication but that treatment would translate into several months of in-patient treatment.  In the later part of last week (less than 1 week into the treatment), Grayson started having some issues that we still can't track down the cause of but on Friday they decided to do an echo.  His echo showed that the Pulmonary Hypertension was gone!!!!  There is a lot going on in this situation that I will never understand, but this piece is so obviously orchestrated by God that I can't do anything but praise Him!

Unfortunately we do have other things going on that I will need to solicit prayers for.  Grayson's typical day includes 1 apnea spell and a couple other "desats" even though he has been on oxygen levels greater than 35%.  Most of the week was 40 but as of right now he is at 32.  They think he may have reflux and now they are feeding his milk over a 30 minute pump.  On Thursday they will insert a second tube through his nose, down his throat, and monitor how much reflux he has in a 24 hour period.  His desats seem to be tied with him being irritable and arching his back, which is a common sign of reflux.

Scarlett's heart condition continues to be an enigma.  On Saturday they discontinued her heart medicine due to some blood pressure issues and her looking a little pale.  Also, I had raised the concern that her heart rate seemed low.  Where her base was around 150-160 at birth, I was noticing her dipping into 100-110 on a regular basis.  This CAN happen due to growth, but in combination with the other symptoms they decided to stop the medicine.  However on Sunday, she started having an escalated heart rate.  We started noticing it around 185-195, but by Sunday evening she was having true tachycardia with a heard rate around 225-230 for 10 seconds.  I saw this happening again last night while I was holding Grayson.  During the day today the nurse noticed a higher heart rate a couple times but it wasn't too high and she was agitated when it happened.  For now, we are waiting and watching closely.  My concern is that there is an underlying issue going on that we don't know about yet.

Otherwise the twins are growing well.  They are now on a 24 Calorie recipe which is half breast milk, where as the 27 calories formula they came off was more formula/fortifier.  Grayson is currently at 2765 grams (6 pounds, 1.5 ounces) and Scarlett is at 2745 grams (6 pounds, 0.8 ounces).

Here are the pictures of the room I promised.

The door where Trish hung up the name tags that were made for them at Riverside.  Grayson is the first bed on the right.  Scarlett is by the window. 

 This is in the "common/sitting area" between our half and the other two beds.  We are looking at Grayson's bed with Scarlett immediately on my left.  We have our own sink in the counter behind the door.

From Grayson's bed looking out towards the common area. 

Standing by the sink looking at Scarlett's bed spot.

11 Week Photos from Saturday:

Scarlett 

Grayson