Wednesday, February 16, 2011


Preemies are still preemies after they leave the NICU.

Makes sense to most people.  But honestly it took me a while to grasp this concept.  The entire time we were in the hospital, all I could think was:

Let's just get them home.  Then everything will be fine.  

For some reason, and maybe it was just my way of dealing with the stress of the hospital, I had this notion that once they came home, they would be just like any other babies who are born full-term and healthy.

It didn't take long for me to realize I was wrong.

Life with preemies at home can be complicated too.  And sometimes it can seem even more so when you don't have the security of knowing there's a doctor or a nurse within arms reach whenever you have a question or concern.

Preemies need to eat every three hours.  And not just like every full-term newborn eats every 3 hours and then if they sleep longer its okay.  Its not okay for preemies.  You set your alarm and you wake them up. 

We had one on fortified breastmilk/nursing and one on a specialized formula.  I actually made posters and taped them to the wall in the kitchen, diagraming formulas for each batch of food for each baby.

They were both on multiple medications multiple times per day.  Campbell came home on a diuretic because she retained fluid on her lungs.  And the diuretic threw off her electrolytes, so she needed sodium chloride to balance out.  Campbell was also on reflux medication.  Lenay and Campbell were both on cardiac medicines.  Some meds were given twice a day, some four times a day.  Keeping track of which baby got which medicines at which time was sometimes nerve-wracking.  I also made medicine posters for the kitchen wall to help keep everything straight. 

I kept logs in color-coordinated folders for each baby to track feedings, diapers, and meds.

Home Oxygen.  Campbell was hospitalized for a week at Thanksgiving on PIC for pneumonia.  When she was discharged, she brought home a new accessory: home O2.  We loved it, because it meant she could be home.  But we soon realized how much more complicated our lives had just become.  The medical equipment company brought us everything we needed, which included a home concentrator.  Its basically the size of a dehumidifier (thats what it looked like to me) and it plugged into the wall.  It pulled the nitrogen out of the air and somehow turned it into oxygen for my baby.  We also had big and little oxygen tanks.  The big tanks were for if we lost power.  We sent a letter to the power company explaining that we needed first priority to have our power restored in the event of an outage, since the concentrator was helping to keep our baby alive.  The little tanks were for anytime we left the house.  The oxygen prevented Campbell from traveling very far within the house.  She spent most of her time out in the living room, plugged into her concentrator and monitor.  Due to her cannula tubing only stretching so far, she did everything in that 5 foot area: feedings, diapers, naps, and baths, until bedtime when we would wheel her bassinet and concentrator into our room for the night.   

Both were on monitors.  So anytime you pick up a baby, you need to pick up the monitor too, or else you will rip the electrodes right off her very delicate skin.  Which we did many times.  Sorry babies!  Lenay was on an apnea monitor.  Campbell was on a pulse ox monitor, which was exactly like the apnea monitor except it had an oxymeter on it as well.  The pulse ox was basically like a bandaid that wrapped around her big toe and was then connected by a cord to the monitor.  It read her blood oxygen saturations.  Anytime it dropped below 82, the alarm would go off.  All I can say is: bane of my existence.  Anytime the baby kicked her foot or moved the slightest bit, the pulse ox connection would be interrupted and the alarm would sound.  Honestly I wish the monitor company would let a parent design a new pulse ox because it was so inaccurate.  I have lots of ideas about that.  The monitor would fill up after about 300 alarms (mostly false, but some real), and need to be downloaded at the equipment company, which was about 3 times a week.  Yep - thats 150 alarms a day.   

To give you an idea of how we felt about the monitor, Eric and I often fantasized about taking it and a couple baseball bats out into an empty field and going all Officespace on it.

Campbell was on the pulse ox monitor for many months.  So during that period, she could only wear sleepers with snaps, to allow the bundle of cords and tubes to come out the crotch.  She could also only have sponge baths due to all her cordage.

Both were in carbeds. Carbeds are for babies who don't fit into a carseat yet.  Not just for babies under 5 lbs, contrary to popular belief.  Campbell was well over 5 lbs by the time she left the NICU, and she was still too small for her carseat.  The bad thing about carbeds is that they are stationary.  In other words, you can't pop them in and out of the car like you can today's carseats.  This made leaving the house with two babies very interesting! 

Reflux.  Oh my goodness, reflux.  I have so much to say about it that I think it needs its own post.  All I can say is if you have a baby with GERD then you know what I am talking about!

RSV shots.  Vital for preemies because their little compromised immune systems make them very susceptible to this virus, which can be deadly.  A home health nurse would come over once a month for 5 months to administer the shots, called Synagis, which protected them by giving them the RSV antibodies.  This is very different than a flu shot, in which you are injected with the weak or dead virus.  RSV shots are simply the actual antibodies, and their protection lasts about 30 days, hence the need for a shot every month during cold and flu season.  And these shots are not cheap!  $1200 a pop.  Per baby.  Per month.  Yep - thats $12,000, which is ridiculous. Thankfully our insurance covered most of the cost.

We hibernated that first winter.  The babies didn't go anywhere except for their doctor appointments.  We were very careful to have Noah change clothes after coming home from preschool, and we bleached and sanitized everything.  We even debated about whether to attend the holidays with our families.  It might seem a little crazy to some people, but the way we looked at it was that we fought so hard to get these babies out of the hospital, we would do everything in our power to keep them out.

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