Tuesday, April 17, 2012

...House Arrest.

Before we left the NICU, we were advised by our doctor to keep Neil and Elizabeth out of crowds for the immediate future.  That meant no large family functions, no taking them to church, and no shopping trips.  Essentially, we were under house arrest.  I only left the house when we were taking the babies to a doctor appointment.

I thought that this was going to be the point where I would go stir-crazy and lose my mind.  It never happened.  I gave myself a very small To Do list every day to keep myself moving.  The list consisted of getting a shower, making the bed, making sure that I ate something, and doing one load of laundry.  That was it.  There were no time constraints other than to have everything done before Scott got home at 6:00.

I didn't stress out about cleaning the house during the day, I planned on dinners that were easy to make, and I wasn't too hard on myself if one of my list items didn't get done.  Surprisingly, there was only one day where I didn't make it into the shower, and two days where the bed didn't get made.  That was it.

What did I do then?  EVERYTHING!  Fed the babies, changed diapers, held them, changed diapers, bathed them, fed them, changed them, changed them, fed them.  I'm pretty sure we go through a metric ton of diapers each week.  When the babies were sleeping I was working on my To Do list.  The only time that things would get stressful at first would be on days where I was trying to get everything done by a specific time...basically, any day that involved a doctor appointment.

And, boy, were there appointments!!!  Well visits occurred each week at first.  Their doctor recommended appointments with a cardiologist to check for heart murmurs and with a radiologist to have ultrasounds done on their hips due to the fact that they were both breech.  I had my six week follow up appointment with my OB/GYN.  Since the babies were in the NICU, we qualified for free developmental screenings, which meant another appointment (thankfully, those ones are at home).  Then we had the actual cardiologist and radiologist appointments, and finally a (yet to be scheduled) orthopedic appointment.

The first tricky thing about appointments is getting two appointment times back to back in a short amount of time.  I realized this when I was pregnant and would need to schedule an ultrasound.  The last thing I wanted to do was wait an hour between appointments.  The more time I had to schedule an appointment, the easier it was to get two time slots.

The second tricky thing about appointments was figuring out who was going to go with me.  Scott was able to do a few, and so was my mom.  Without a second pair of arms we wouldn't had been able to go anywhere!

The third tricky thing about appointments was stroller negotiation.  Scott's family was wonderful enough to buy us the BOB Revolution Dualie stroller.  It's a side-by-side jogging stroller.  Translation?  Awesome, freaking huge, and easy to maneuver, unless you need to fit it through a standard door.  Then you're SOL.  So, how was I going to get the babies into the offices for their appointments?  That's where the second person came in handy.  We carried them.  My mom was given a double stroller (front to back style) and we tried that for my six week follow up, but it was in the way.  As long as both adults were going to be available for the whole appointment, we just carried them in.

Finally, there was the diaper bag.  I'm not an overly paranoid person, but I am certain of the fact that if I don't pack enough stuff for Neil and Elizabeth both of them will have a huge diaper blow out, and I will be stuck with two poopy (and miserable) babies.  That being said, I'd take six diapers, a travel container of wipes, a travel kit with diaper cream, shampoo, lotion, and powder, two onesies, a bag of basic medical supplies, burp cloths/bibs, and hand sanitizer to an appointment that was going to result in a trip that would be no longer than two hours.  If we were going to be gone longer I'd pack more diapers and onesies and add bottles.  Needless to say, my diaper bag is a small duffle bag.

We may not have gone out to do anything super exciting, but I think we all handled trips well.  Thank goodness Neil an Elizabeth like riding in the car!  Although house arrest has officially been lifted, we are still avoiding large crowds for the time being...just to be safe.


Monday, April 2, 2012

...Our NICU Experience.

The first time I saw Neil and Elizabeth was in the Neonatal Intensive Care Unit at West Penn. They were born at 11:48 and 11:49, but I didn't get to see them until after 4:00. I was wheeled (in my recovery bed) into the NICU and "driven" up to each of the babies' isolettes. Since the nursing staff tries to split the work load of the babies coming into the NICU in a fair manner Neil and Elizabeth were in different pods. I remember thinking that the pods were like bing on a spaceship of some kind. I couldn't move a lot, so I wasn't able to touch either of them. That was hard.

Neil was on a CPAP an Elizabeth was using a nasal cannula to help them breathe. I thought that Neil looked like M
r. Magoo in old fashioned scuba gear. I was told that both babies had been given a corticosteroid to help their lungs, and that both babies were stable. Im sure they told me other stuff, but I was so out of it that all I heard was that they were okay.

I know a few people who's babies ended up in the NICU at West Penn, and they all told me how wonderful the staff were. It's true. I had no clue how long our stay was going to be (it turned out to be 21 days in the NICU and 8 days in the Pediatric Unit), but I knew t
hat my babies were being cared for in an amazing way.

At first I had no clue what to do, what to say, where to stand...anything! I felt like I was at a museum. Was I allowed to open the isolette to touch my child? Was I allowed to talk in the room? Was I interrupting something that the nurse needed to do? Did I just make that alarm go off??? (Half of the time, yes! There were so many things at
tached to them at first that any time you moved them an alarm went off.) I was uncertain of everything. I quickly got to see how things worked and became more confident. By the time we left the NICU I was a pro! I even had a routine for how my visit would go.

During Neil and Elizabeth's stay I had to learn a lot about premature babies, and fast! The first thing was getting a handle on all of the terms that they used. I was so overwhelmed that when they told me that both babies were on "room air" I thought the nurse w
as talking about a form of medication. I googled Rumair. Oops! A's and B's? Apneas and Bradycardias. I had to google that a few times because I just couldn't remember which was which. Pulse/Ox? Desat? UGH! It wasn't until about 15 days into their stay that I realized that West Penn's NICU webpage had most of the terms an
d procedures listed on there for parents. Thank goodness!

During their stay the babies had to contend with feeding tubes, heart monitors, pulse monitors, oxygen monitors, CPAPs, nasal cannulas, Elizabeth being the Blue Light Special for a day or two (she was slightly jaundiced), brain ultrasounds, and Neil being poked every day because his IVs wouldn't stay in.

Elizabeth would improve to the point
where she didn't need something anymore and a few days later Neil would get frustrated and rip a similar device off of himself! For example, Elizabeth was able to have her nasal cannula removed. Two days later Neil had enough of the CPAP and ripped the thing off of his face! Elizabeth was doing so well with bottle feedings that they removed her feeding tube. Again, two days later Neil said, "Enough!" and ripped his tube out. At that point they were both in the same pod, but weren't n
ext to each other. Even though, it seemed like they both knew what the other was doing and were racing each other to see who would get out first!

On day 21 Nurse Carol told me that she had great news for me...the babies were being moved downstairs! I had no clue what this meant. She explained that it was the first step towards getting the babies home. They were leaving the NICU and going to the Pediatric Unit. They were going to be in cribs in the same room. They would only be atta
ched to the monitors, and I could even sleep in the room and stay with them 24 ours a day if I wanted to! Holy crap!!! I didn't know what to do. All of these questions came to mind, but I was so overwhelmed that I couldn't get any of them out. All I was able to manage was, "What do I need to do?" Nurse Carol took me downstairs to tour the Peds Unit. I saw the room that they would be in. They gave me the coveted passcode to get into the unit. Neil and Elizabeth were going to be
moved down to their new room in the evening.

We went back upstairs and I was preparing to spend some time with each baby for their feeding. As I was getting ready Nurse Carol asked me if I'd like to be on the news. WHAT??? As it turned out, one of the local news stations was doing a piece on West Penn's NICU. They wanted to get some shots of parents and babies that were there and doing well. I just so happened to be the only parent there, so was I interested in having the kids be on TV? Sure! When they brought the doctor that
was being interviewed into our pod I laughed! It was Dr. Miranda, the doctor that delivered Neil and Elizabeth. She recognized me immediately, and started laughing. She gave me a big hug. I introduced her to Neil and Elizabeth. She held each of them, and kissed them, saying how wonderful they looked. Naturally, I agreed! The news crew told me that the piece would air at some point in April. Again, I was so overwhelmed that I don't even remember which news station
it was! I hope someone from the NICU calls me. They said that they would!

That night we moved down to Peds. We had our own room, a TV, and a private bathroom. Unfortunately the only thing to sleep on was a chair that pulled out into a small bed. Scott and I stayed for one night, but it was so stressful that neither of us really slept. Instead, I would go to the hospital during the day and go home around the time that Scott was done working. that way I could still sleep, but spend a
large part of the day with the babies.

The babies moved to the Peds Unit on a Thursday. After the weekend was over we started getting hints that the babies were going to be coming home. By Tuesday their doctor told me that, barring any major setbacks, they would be coming home by Friday! We kept it a secret, because we didn't want to get anyone's hopes up...especially our own. We were getting excited, and nervous. The nursery wasn't done!
We only had one crib. Crap! Luckily we had two rocker sleepers, just in case.

On Friday morning I called the Peds Unit to see how they were doing. I was told that they had a great night completely off of the monitors and that they were coming home today. Scott called off of work, and we headed to the hospital to get our children, who were officially one month old.

We were going home.