How you can help

Jesus said to them, “Suppose one of you has a friend, and goes to him at midnight and says to him, ‘Friend, lend me three loaves; for a friend of mine has come to me from a journey, and I have nothing to set before him’; and from inside he answers and says, ‘Do not bother me; the door has already been shut and my children and I are in bed; I cannot get up and give you anything.’ I tell you, even though he will not get up and give him anything because he is his friend, yet because of his persistence he will get up and give him as much as he needs.
 “So I say to you, ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks, receives; and he who seeks, finds; and to him who knocks, it will be opened. Now suppose one of you fathers is asked by his son for a fish; he will not give him a snake instead of a fish, will he? Or if he is asked for an egg, he will not give him a scorpion, will he? If you then, being evil, know how to give good gifts to your children, how much more will your heavenly Father give the Holy Spirit to those who ask Him?” - Luke 11:5-13

Trish and I are asked over and over, "How can we help?  What can I do?  What do you need?"  First, thank you!  Thank you!  THANK YOU!  We cannot express how awesome it is to feel so loved by so many people.  The gifts, flowers, encouragement in multiple forms mean so much to us.

We were being encouraged allow our friends and family to help.  I want to ask everyone to pray.  If you follow the blog, pray specifically, especially for the twins' lungs and kidneys and for God's comfort and peace for us.  Generically, my prayers typically sound something like this: "Father God, thank you for another day with these tiny miracles.  Selfishly I ask for a lifetime more.  Please strengthen Your children and continue to grow their little bodies.  Give the doctors and nurses strength and wisdom and use them as instruments showing your healing power.  Provide strength and comfort to all of us NICU parents.  We love You and are grateful for all that You do. In Your name we pray."

The second thing I might ask is for your understanding if we don't get back to you all the time.  Currently, our schedule is something like this:  After Trish gets up 3-4 times at night to pump (and I am roused to carry her milk to the fridge) we get up for the day.  Until she is cleared to go to work, my boss is surpassing any expectation I had and allowing me to work from home, but I try to spend my daytime working, except I take my "lunch" to visit the NICU to try and make the doctor's rounds.  After we get the lowdown we come home, eat a quick lunch, then Trish pumps and takes a nap, then pumps again.  Generally it is around 4:30, then Trish will make something for dinner so we can eat at 5 and then leave for the hospital.  We talk to the nurses to see how they did that day, then I try to listen in to the nurse shift change to see what they didn't tell me (although its tough because it is usually 2 different conversations I am listening to),  We can spend about 20 minutes of "Hand Containment" where we make a cupping shape and hold their legs and heads.  There is a "Hands-On Care" that we participate it where we change their diaper and clean their mouth/gums.  We will also watch the nurses check to see if there is anything in their stomachs (they call this residuals), feed them, and make any adjustments to their tube, IV, or sensor placements, position, or bedding, etc..  The rest of the time we are talking to them, praying for them, singing to them, or chatting with the nurses, all while watching the monitors, missing a heartbeat every time an alarm goes off.  Those 4.5ish hours both fly by and crawl.  I call it the NICU time warp.  Typically we only leave because we start yawning uncontrollably or our stomach starts grumbling (its hard to eat enough when that meal is keeping you from your kids!)  We come home and the cycle starts all over again.  Its very hard to differentiate Thursday from Monday, and it feels like we have been doing this for years, but has only been days.  So PLEASE don't be offended if we don't call you back.  We love you and again are very grateful that you are thinking of us, but the travel time to/from NICU is probably our only window that we can chat, and usually we are chatting (fun stuff like did the Breast Pump get ordered yet, or did this doctor get the insurance information or was it that doctor we filled that paperwork out for). 

Now, I know that most of you are already praying and want to do more, something tangible, an act of love.  Northwest Bible Church has spearheaded a "meal plan" (I have no idea what they are called, but I guess there is a website that people sign up on to bring us meals).  PS - thanks Tara Hart!  I believe this list will circulate beyond our NWB family and maybe Tara can post a link in the comments below???  Outside of that I don't know what else we need. I struggle with being self-reliant (I am being genuine here because I think it is a stumbling block sometimes) so it is not natural for me to think "Oh, this needs done, let me reach out to my dear friend to do it for me."  I will do my best to say yes if you ask specifically and its something that needs done (such as the meal thing that Tara asked to do for us).

So reach out often but understand if we can't get back to you right away.

And now, the reason you came here today, cute pictures and updates:

Grayson received more blood today.  His labs looked better but was still not where they wanted them.   He also received a PICC (pronounced like pick) line yesterday.  It stands for Peripherally Inserted Central Catheter and goes into his vein at his wrist and snakes through his vein to his heart.  This replaced one of the lines he had going into his umbilical line.  We knew this was a probability because the Umbilical lines typically don't last more than a week and they need the line to get IV fluids in.  Scarlett will need one but apparently they only had 1 catheter at the time the specially trained/certified nurse was there.  Grayson was still in the overhead billi-light but was able to shed the underside "pillow light."  Oh, and he had his first bowel movement!  This is huge and a sign that his systems are working and that he can process the billirubin our so he won't need the lights so often.  Otherwise there were no real changes.  There was a new doctor at rounds whose communication skills were different than the doc we had the last few days.  He made it clear that our kids are "critical" and right now we should be most concerned about their lungs, even more so with Grayson.  Next, we should worry about their kidneys.  Their high urine output means their kidney's aren't absorbing all of the nutrients they need so they are dumping it in their urine.  Then the team needs to give that back to them in addition to nutrients they needed initially.

We were able to get pictures of both of them with their eyes open around the "Hands on Caring" times:

Grayson peeking

Scarlett being a drama queen:

Scarlett wide awake:

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