FAQ's

We've had so many people asking a lot of the same pertinent questions.  We thought we'd do a little FAQ on our blog so that you know what's going on!  We may update these as time goes on and the answers could change.

Love, Landon & Jenny

What happened?

Jenny had what is called Preterm Premature Rupture of Membranes (PPROM).  It is simply when the membrane around the baby ruptures early (the water breaks) and labor usually follows soon after.  We knew that there excess fluid around the baby though nobody knows what causes this for sure.  Jenny's water broke at 27 weeks.

What caused it and could it have been prevented?

We have no idea what caused it and no, it couldn't have been prevented.  There are certain risk factors that come along with PPROM, but Jenny did not show any of these.  We could beat ourselves up wondering if there is anything we could have done, but the doctors have assured us that this is spontaneous and can happen to anyone at any time.

Why did you deliver when you did?

When Jenny arrived in Topeka on the night of Aug. 11, the doctors were sure that we would deliver soon.  We defied the odds and made it longer than expected.  On Aug. 20, the baby was showing signs of tiring on the monitor, mainly through lack of movement.  After seeing the lack of movement and running a blood test, it was clear that keeping the baby in much longer would result in distress or infection.  The OB doctor and maternal fetal doctor decided together to go ahead and deliver by c-section.  Ethan Marx Diveley was born on Friday, Aug. 20 at 4:59 p.m., weighing 2 pounds, 6 ounces, and was 15 inches long.

Ethan has so many tubes and wires around him.  What do they do?

The wires, tubes, and machines are intimidating at first, but once you understand their purpose it is not so scary.  He has a pic line running from one hand that goes through his arm and directly into a major artery.  This is his lifeline for the doctors and nurses.  He'll only have this inserted one time.  He's currently on a CPAP machine that helps encourage the alveoli to open and forces air through his nose.  He has some jaundice right now which is treated with photo therapy, thus he has a mask that covers his eyes.  He also has a feeding tube that goes through his mouth and into his stomach.  As we progress, there may be more added or taken away, but they are simply there to help him.  Aside from these aides, he is simply a miniature version of a full-term baby.  He just needs help getting to that point of being "full term."

Right now we are able to touch him, help change his diaper, take his temperature, and even pick him up within the incubator.  Hopefully in a week or so we'll be able to hold him.  We'll also begin kangaroo care at some point soon (Google it for an explanation).  

Are you going to drive from Independence to Topeka every day?

Right now we simply don't know what the plan is for us in the next weeks and months ahead.  Landon and Trent will begin school on Sept. 1 and obviously we have regular things in life that will need to be continued.  Jenny will probably spend much of her time between the two towns, maybe 2-3 days in one place, then 2-3 days in the other.  These first two weeks may be a little different than any routine we fall into later, simply because school hasn't started.  We will utilize the Ronald McDonald House, hotels, family hospitality, and maybe have a couple other options to explore.  

When will Ethan come home?

Ethan will probably remain here at Stormont-Vail until a date approximate to his original due date, Nov. 11.  However, that can vary by weeks, depending on how he progresses.  There is no weight requirement or date requirement, but he has to meet certain criteria, such as maintaining normal body temperature on his own, completing feedings, and sleeping in a crib, that will take long enough to meet any weight or date requirement that would have needed to be met.  It is normal for preemie babies to make good progress and then have little setbacks.  

What can friends and family do?

Our friends and family have already done so much by offering prayers, thoughts, and words of encouragement through these first days.  Continuing those simple gifts is more than we can ask for.  

We do not need food.  Landon is as efficient in the kitchen as Jenny, so he is fine making his own meals when she is gone.  Plus, with our crazy schedules coming up, it is hard to know when we will even be home to eat a meal.

Everything we do right now will cost money.  Of course we have insurance that will take care of the bulk of our medical expenses.  But the travel, lodging, meals, etc…., will begin to stack up.  We aren't sure what to do with that information, but there you have it.

Many of you have offered your time and help with Trent.  It is very possible that we'll be utilizing you over the next weeks ahead.  Once Jenny is recovered and we begin to develop a schedule, you'll surely hear from us!

Do you want visitors to see Ethan?

Of course we love to have visitors.  We just ask that you plan ahead with us so that the time is spread out and we're for sure in Topeka.  There are only four other people that can visit Ethan without one of Landon or Jenny present.  Trent is able to visit Ethan with us, though no other children under the age of 16 can go into the NICU.  If you do visit the NICU with us, you will be required to register at the front desk and your temperature will be taken.  Anybody with a fever over 99.5 will not be allowed in the NICU.  We can decorate the door to his room (he has his own room) and several places in his room, so you're welcome to send hard or paper items.  Anything that isn't safe to place in his room will be taken home for his arrival there.

Won't it be hard to leave your baby there?

Of course.  We'll probably both float out of here on our own tears.  However, we have complete peace with the hospital staff and facility, which makes our time away much easier.  God is guiding the hands and minds of those people who will care for Ethan and that gives us ultimate peace.  We also know that Ethan won't remember any of this.  We'll share all sorts of stories with him as he grows up, but he won't remember the tough stuff.  
And we have our special little Trent at home, who is 5 years old, and who will remember all of this.  He needs us right now….we need him too.  So yes, we'll be torn at various times as where is best to spend our time, but our hearts and minds are at peace with Ethan's future and his current care.