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: