The Grandparent’s View of Jacob’s Journey: We started a brief story of Jacob and his journey, which turned out to be a couple of pages per week.  Too long for here, so this is only a thumbnail story of a remarkable little boy (wee mighty man, fighter, trooper, chunky monkey and a long list of heartfelt nicknames) and his incredibly courageous parents (our kids and we all are extremely proud of them.)


This is a work in progress because, even now, writing about the events brings back tears after only a few minutes.  So, little by little, we will fill in Jacob’s Journey from a grandparent’s view.


Week 1: An emergency delivery on July 24, 2005, 9 weeks early, gives us Jacob David, 2 pounds 14 ounces and 16 ¾ inches long.  Mom and Dad are fine (though scared) and Jacob is rushed into the Neonatal Intensive Care Unit to get settled in.  He is SO small you almost can’t see him behind the oxygen mask.  He is cute, though.  From the beginning, he doesn’t like loud noises and bright lights - both are in the NICU.  We learn to sanitize our hands, that we can touch him (no patting or rubbing, though), we can talk softly to him (but not if we are touching him) and a host of other things that need to be done with premature infants.  He does well with some ‘normal’ preemie things that require treatment and everyone gives him a good chance of making it out of the hospital.  Until the end of the week when the staff begins testing to evaluate blood chemistry and kidney function – and the results are not good.


Week 2 & 3: All the test results are in and the doctor’s schedule a family meeting on Monday, 3:00 p.m., in the conference room.  We all know that good news is given in the patient’s room – conference rooms are reserved for the really bad stuff.  And this is really bad stuff.  The doctors talk in calm, firm voices but we can see the pain in everyone’s eyes as they tell us Jacob has kidney failure.  Our kids ask all the right questions and get all the wrong answers.  He is simply too small for treatment.  We travel the circle from no hope to hope to no hope several times – the answer is always the same: he has two weeks, maybe up to two months, to live.  Now the goal is to get Jacob home as soon as possible and give him as much love as we can in the time we are given.  The doctors and nurses are terrific in their care for Jacob and all of us, and they want to send a family home.  Jacob is going home, just not for long.


We get used to NICU, getting to know all the staff, especially one of the doctors and several wonderful nurses.  Gramma gets to hold Jacob first on Tuesday – I wanted to toss a coin or something for first holding rights, but the look in her eyes says it all and I step aside.  Just watching is wonderful.  The nurses are waiting for me on Wednesday morning when I come in to hold Jacob for my first time.  Indescribable.  Time flies as he nestles into my arms.  We’ve all started to sing to him and I start “Puff, the Magic Dragon”.  Without thinking, I start the last verse: “Now a dragon lives forever, but not so little …”.  No more last verse.


The rest of our time in NICU is spent learning how to take care for Jacob, how to take care of each other and figuring out how on earth we are going to deal with this.  We also need to figure out how to take care of our kids as they take care of Jacob.  We are still in shock, but that becomes part of our routine as we take one day at a time.  Prayer becomes a lot more important than it was a few days ago.


The next week in NICU is pretty much the same.  We all take turns being with Jacob, being with our kids and helping get ready to take Jacob home.  We learn about Brady’s (when premature infants forget to breath or keep their hearts beating) and how to overcome them.  We learn how to pick him up with the all the tubes, we learn how to work together as a family, we learn that Jacob needs help regulating his body temperature, how much oxygen he needs… we learn things we never wanted to know, but now we need to know.


The hospital chaplain is a tremdous help, as all the staff are.  She knows how to make a mold of his hand to keep when he goes home.  The ‘hand statute’ is so tiny and it is something of him the kids will keep (forever.)  With a little imagination, you can see the fingers and thumb almost form the sign for ‘I love you.’   The medical staff really helps with making arrangements to get Jacob home, making sure to answer all the kid’s questions, reviewing how to care for him, making arrangements for home (hospice) care for him, etc.  A physician’s assistant asks if there is anything else the kid’s need to take home with them.  Heather says ‘Yes, you.’  The P.A. is speechless and her eyes fill up – actually, all of us were on the verge of tears.


Jacob comes home on Friday, in a borrowed car seat (he is only going on one car trip) that is way too big for him (none are designed for one so tiny) in a convoy arranged by Dad with protective cars in front and in the rear.  His family is waiting and we all think…


Welcome home, little boy.


Week 4:


[The work in progress continues.  The next two months are in hospice care for Jacob.]

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