Hump Day

Thankfully we had another boring day today.  Early this morning, tests showed that Grayson needed a blood transfusion.  Scarlett actually started with more red blood cells so even though they both decreased by the same amount (they keep taking their blood to check the gas levels), she probably won't need a transfusion until Thursday or Friday.  We hope the new blood will help his oxygen levels.  He went back under the lights because his liver won't process the bilirubin in the new blood, and his levels were already too high.  Their lung X-rays showed minor improvement in the ICE, but they don't expect things to change over night.  Scarlett's right lung still looks good.

Here is a video of Grayson having the hiccups.  And apparently boys sticking their hands in their pants is something genetic, as you will see him do at 4 days old (26 weeks and 2 days gestation) ;-)  You will also hear the oscillator machine in the background.

Here is Scarlett taking a look:

Here are pics "with" our kiddos:

And here is a picture of how many people God uses to help these fighters.  Today, they both had their own nurses.  This won't always be the case, but while they are "sicker" they will do this as best as they can with their staff.  Their nurses today were Meghan and Becca. I think we have had Becca 3 out of 4 days and today she signed up as Grayson's "primary" so she will typically be his nurse.  Meghan travels between all of the Children's facilities but we wish we could keep her too!

There is also a Neonatal Physician, Nurse Practitioner, Dietitian, Occupational Therapist, and Social Worker among others.

The 7p-7a nurses are new to them, but I am sure they are fantastic too!

What We Say

Thank you for all of your love and support!  Trish is doing very well and we are slowly catching up on our sleep.  Here are all of the flowers she received while in the hospital:

There are a few sayings that we learn quickly as NICU parents:

• Boring is good.
• Expect 2 steps forward and 1 step back.
• Everything is a 3 letter acronym, except NICU.

Today was boring/good.  Scarlett did take a step back as she started showing signs of PIE - Pulmonary Interstitial Emphysema.  This condition is common in babies this premature, and likely caused by the ventilators.  Essentially, the sacs in side the lungs burst and air leaks into the lungs.  Scarlett had these issues in her upper left lung this morning and they made the decision to move her to the Oscillator like her brother.  In a later X-Ray, she showed signs in her entire left lung.  Many preemies experience this and grow up without any long-term effects.

Grayson was pretty stable today.  They moved his oxygen down to 28%.

Both kiddoes were given a break from the photo-therapy today but it was more about their respiratory issues than it was their bilirubin levels.  They wanted to take today and bundle them up tight and keep the lights down to better simulate them in the womb.

Grayson squirmed a lot today.  They were giving him a pain medication yesterday with a final dose this morning thinking he was agitated with the tubing.  When I checked in around 5, Becca, the nurse said he was still wiggling around but it wasn't too bad.

Grayson taking a peek out at the world:

 Scarlett sleeping on her side to help her battle the PIE (It was pretty dark so I tried to edit and lost some quality):

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!

Daddy's Hands

Today I had my first moment where I realized how delicate my children are.  Grayson had a moment where he "Desat" as in desaturation as in not breathing/getting enough oxygen.

The NICU is a pretty intimidating place.  There are lots of monitors and they give off many alarms.  The nurses gave me some sound advice, that I shouldn't freak out unless they freak out.  So I started to learn what the numbers mean and that some of the alarms are actually really good signs.

But this morning, I saw what I think was the nurse freak out.  I heard the chiming of the alarm but was on the backside of the alarms but noticed our nurse radio someone, saying something about Desat.  Next thing you know, 3 more medical professional swoop in, the doctor, the nurse practioner and someone else.  They asked me to take my arm off the top of incubator and next thing I know the top of the container rose up and the sides flipped down.  They removed his oxygen intubation tube and rotated him 90 degrees and started "bagging" him to help him breathe.  They grabbed another intubation kit but that was about the time I had to step out because I wasn't ready to cope with the fragility of life.  But hours later (or so it seemed, but was really minutes if that), they got the intubation tube in him and all is well!

Here are a couple pics from earlier this afternoon.  The color looks strange because they have
Photo Therapy" going on.

Grayson:

Scarlet:

11/1 Night Update

Scarlet was not doing great with Cpap device so after looking at an Xray the doctor decided to intubate her again and give her another dose of surfactant.  Surfactant is found naturally in our bodies and is the substance the makes the lungs flexible so they can inflate and deflate.  Preemie babies commonly need surfactant because their lungs weren't ready to breathe air outside of the womb.

Unfortunately the doctor was called away to deliver another set of twins and we realized it was 9pm so we left to grab dinner and try to go to bed.  We believe the nurses taking care of them are exceptionally skilled but it is still hard to peel ourselves away.  Both our kids have individually assigned nurses for tonight.  It won't always be that way but their numbers were low enough that they could plan it that way.  Scarlet's nurse, Justin, started his shift at 3pm and gets off at 7am, so pray that God works through him keeping him sharp and alert tonight.

WOW!

Trish and I are experiencing soooooo many emotions that it is hard to share.  First, we are incredibly thankful for all the love, support, and prayers.  We are in awe of these miracles that God is allowing us to shepherd.  Of course we are fearful of the journey ahead of us, especially the next few months but are confident that God's will will be done.

Scarlett was doing a great job breathing on her own and was able to get her tube replaced for a nasal cannula.

And here is a video of Grayson taking a peek to see what the world has to offer

Welcome Grayson William and Scarlett Ann

Trish delivered Grayson William at 10:47am at 1lb 15 oz and Scarlett Ann at 11:04am at 2lbs even!  Trish is doing well and both babies are in the NICU.  Here are pics of Trish and I before we went back, then pics of Scarlett.  I didn't have my head on straight enough to take pics of Grayson, but will snap some as soon as they let us back in the NICU.