Sleep Study

Right after Reagan's discharge from Hopkins, I received a call from Dr. McGrath, of the pulmonary team.  She suggested that Reagan come in for a sleep study so that Pulm could have some baseline data regarding her breathing issues and low resting heart rate.  They also wanted to see how the stridor affected her breathing, and to monitor her sleep stages.  The sleep study was scheduled for Wednesday, September 25.

Tom made arrangements to come down and stay with Ryan overnight and then take him to school on Thursday morning.  This proved to be invaluable because it allowed Mike and I both to accompany Reagan to the hospital.  I was told that only one of us could stay with her, so I packed a bag of her things and my things, and off we went.  Once we got there, our tech informed us that since she was in a crib and there were two twin beds in the room, we could have both stayed if we wanted to.  We weren't prepared for that, so we decided to stick to our plan and I would stay overnight while Mike went back home to be with Ryan.

The sleep study took place at Mt. Washington Pediatric Hospital, which is on the Towson side of Baltimore.  We checked in and went upstairs.  The room had two twin beds and a crib, but the bathroom was out in the hall... hello college dorms!  During the sleep study, everything is recorded on video, so I quickly realized that privacy within the room was pretty much non-existent except for one small corner where you could hide if you really needed to (perhaps if you wanted to pump?).  There are vending machines, but the choices were far from gourmet, so my brand new 2 lb. bag of almonds came in handy!

We got to the hospital precisely at 8:30 PM.  The most important detail of preparing for a sleep study is that you LIE STILL.  Since you can't tell a two month old baby to lie still, you can imagine the fun we had getting Reagan all hooked up.

Right after we arrived

Thirty minutes after that......

Two hours later.  Reagan was ready to rip those wires out!

Finally, everything was in place.

Reagan cried pretty much the entire time she was being hooked up, so by this point, she was exhausted and fell asleep.  Every time she woke up, she realized she was confined, and that did not go over well.  It made her overnight feedings very difficult!  Reagan is comforted largely by two things: the sound of the shower (and the ensuing steam which helps her congestion) and being walked.  I could do neither of these things as I had no access to a shower or steam, and I was not able to walk her back and forth.  Her range of motion was literally about two feet of space.

We both slept for a four hour stretch, and we had to be out the next morning by 6 AM.  

We came home, and Reagan and I went to bed.  Tom and Mike got Ryan up and ready for school.  They took him to school together, and then Tom headed home and Mike headed to work.

The results take 7-10 days to process.  I'm at the point now where the wait for test results is nerve wracking!!  What other new things will we uncover?  How might her care become more complex?

Getting ready to go home the next morning.  The gauze and the transmitter gel gave her a little bit of a bumpy rash, which went away with some A&D after a day or so.

PA, Part II

The babies and I came home again this weekend.
Reagan has been crying for most of it.... I wish I knew how to make her feel better.  It's also exhausting and sad that she's been so uncomfortable.  I value every second I spend with my parents.  I wish that we would have been able to focus a little more on our time together, but we've basically been at the mercy of Reagan's discomfort.

I figured that the best thing I could do was keep Ryan out of the house and/or occupied.  Saturday was very busy.  Ryan helped Pop Pop take the Lexus in for service, and Pete the Mechanic let Ryan help out!  I don't know whose car this is on the lift, but we were mighty grateful that Ryan had the opportunity to play with it by pushing the button repeatedly and making the car go up and down (and up and down).

Next, Pete gave Ryan a wrench.........

... and he did a little tinkering.  Ryan loves the auto shop!

Later on after a nap, we went to a fall festival at Highland Orchards.  Mom stayed home with RK.  Ryan got his face painted for the first time-- a shark that opened his mouth when Ryan did!

Yes, he is!

Ryan's first time on a see saw.  The other boy was awesome with him... he had to do most of the work because Ryan is so light, but he didn't mind and was most accommodating.  Ryan didn't want to get off!

Miss Dorothy painted his shark.  She is a theater makeup artist.

RAAAAWWWRR!!!!

Next up was a hayride... Bootsie's first.

A moment of calm for RK and Yia Yia

Sunday, we went to the park with Granddad.  Later, Ryan spent some time at Granddad and Mia's house.  My stepsister and her husband were down with their daughter, Evie.  Evie and Reagan are exactly one week apart (Reagan is older).  Evie eats roughly 4.5-5 oz per feeding.  Reagan is still holding steady at 3 oz or less, and sometimes she'll eat 4 oz for one of the middle of the night feedings.  When I see how other babies her age are eating so much more, it does worry me that eventually she is going to lose weight.

Two Month Well Visit

With all of the OTHER doctor visits we've had, it's so easy to forget the routine appointments!

Reagan had her two month well visit yesterday.  I'm very happy to report that she weighs 9 lbs, 14.5 oz, which means that she has gained 6 oz. in a week.  This is excellent news!!

She is in the 10-25 %ile for weight, the 75th %ile for length (23 inches long), and the 50th %ile for head circumference.  This is up from the 5th %ile for weight that she was in during her 1 month checkup.  The doctor and I also discussed a formula switch a bit further.  I'm still on the fence about it, but I do think I'd like to try the Neocate.  It's the best formula out there, and is supposed to do wonders for babies with Reagan's issues, especially the severe reflux.

I think about it this way: as a Mom, can I say that I have done *everything* I can for my child?  And my answer is... not quite yet.  Switching her formula to the best out there is the ONE thing I haven't done yet.  Yes, it's expensive.  $149/case.  And insurance doesn't always cover it, especially if it isn't deemed absolutely medically necessary, which is iffy in Reagan's case because even though she has several issues, she is gaining weight and that tends to be the deciding factor.

I'm going to think about it some more over the next few days.

Meanwhile, we've been having quite a bit of fun over here.

"Mom, take a picture of me giving a speech on this tree stump."

Biker dude!

Circling the books that he wants from his book order

Princess smiles <3

Feeding the fish at Gambrills Auto Spa

Target practice!

And, We're Back.

Reagan was still vomiting a bit on Wednesday.  Thursday, she slept all morning and was lethargic and very hard to rouse.  I even dribbled water from an ice cube on her face, and she didn't really seem bothered.  This concerned me, so I made an appointment with her pediatrician.  When we got to the office and they checked her oxygen, it was down to 88 when she was in the car seat.  We took her out and the doctor observed Reagan's activity for a little bit (she mostly slept).  We tried to rouse her a bit but nothing was working.  The doctor wanted us to head to the ER, but she was concerned about the desaturation when Reagan was in her car seat, so we had to wait a bit to be sure that she'd be okay making the trip.  During this time, I called Mom and Mike and let them know what was going on.

We got to the hospital right after noon, and of course, Reagan decided she'd wake up and be somewhat chipper.

After an examination by the ER pediatrician, he said, "Well, I have good news.  I'm not worried... she has a virus.  It's good for you when I say I'm not worried."

We both agreed that fluids would be the best course of action.  They also wanted to do some lab work and to get a clean catch urine sample.  This required a straight cath and was something I had to leave the room for because Reagan was too upset.

When the nurse came out to get me, she said that they'd have to try again later because just as they were cleaning the area, Reagan peed all over both nurses, every blanket and sheet on the bed, and some even went onto the floor!  That's my girl... she wasn't putting up with that at the moment!  The lab results came back and the doctor's diagnosis was confirmed.  Her white blood cell count showed a 70% presence of lymphocytes, the cells that fight viral infections.

They did eventually get a successful urine sample later.  No further problems there.

Fluids..... just what she needed!

This is the only way Reagan would sleep

Back to my happy girl!

Later at home, Reagan had a special smile for her brother!  Ryan was sitting on the couch and Reagan was watching him closely, beaming!  She and her brother already have such an awesome bond.

She's already trying to steal his car!

I've Got a Golden Tiicket... errr... Swing?

Since Reagan has really bad reflux, she does not do well at all in regular swings.  This means that she is either in the carrier on my chest, in her Nap Nanny, or in her crib.  She's also not a fan of remaining stationery all the time, unless she's on me.  She's quite content in her Mei Tai, but it's definitely not safe for cooking and such.  I've been eyeing up the Mamaroo for quite some time, but couldn't really justify the expense, even if it IS an awesome space-age looking swing.  However, once I read reviews from parents of very refluxy babies, I thought it might be perfect for us.

I scrounged up some help from her baby shower:

...and off I went to Babies R Us.

The thing comes in a box that, upon opening, has complete instructions for how to re-package the swing when you want to store it.  This is all well and good but we all lose instructions, right?  However, these instructions are STUCK to the inner lid of the box!!  How cool is that?  The swing was easy to set up and took all of five minutes.  The black border you see below is actually two zippered sections which connect the hammock-style seat to the frame.  Reagan already threw up in it once, and all I did was zip it off, wash it, and zip it right back on.  I can't say enough about how great this thing is.  The movements are fluid and the swing is whisper quiet.

But then came the real test....

Thirty seconds into it, she was dancing and smiling like crazy!  Success!

The good news is, if you have a 20% of coupon to BRU, it IS good for the swing, which will take $48 off the price if you get the swing with the cushy pad.  The one that comes with a grey pad feels like a burlap sack, I'm just warning you.  It also isn't nearly as quiet as the cushioned seat if the baby is moving around a lot.  You can hear the scratchiness of the fabric.  Still, you could easily make it more comfortable by just throwing a blanket in there.

Why I LOVE Nurse Practitioners

I'd like to give a shout out to all the CRNPs out there.  I mean seriously, I love you guys.  Ryan's first pediatrician was a CRNP but then she moved to DC Children's Hospital.  We went round and round with peds for a bit, and then settled on the same practice, different office.  We absolutely love our doctor, but after another scary bout of vomiting with Reagan this morning, I made the first available appointment with the NP.  She was the FIRST one to EVER suggest that Reagan try a Preemie nipple for her Dr. Brown's bottles.

GENIUS!

After all the doctors we have been to throughout this process, no one else has suggested that.  Meghann even printed out a picture of the packaging and verified that they were in stock at the closest Babies R Us.

So, back into the car and off we went.  I managed to get the nipples and get Reagan home right in time for her next feeding.  There was an INSTANT difference.  She ate smoother, dribbled less... maybe this is the answer to our prayers!

Such beautiful eyes!

Cuteness.

Here are some pictures from my day of adventure with Ryan on Friday.  Sadly, Preschool Pandas was not at a hit.  Ryan really likes the gymnastics-based classes at Rolly Pollies a lot better.

Ahoy!

"Mommy, you and Reagan come up too!"

Lunch at Panera after our busy morning of bouncing and Panda-ing

Ryan is having a great week at the beach!

He had the opportunity to "drive" a friend's pontoon boat.  He and Bootsie absolutely loved a day out on the water.  He definitely doesn't have his mother's boat-specific motion sickness!

While he is away, we're holding down the fort:

Sitting up is hard work!

Winston shows us how napping is done.

The many faces of RK

Movin' and Groovin'!

It's been wonderful to have a few "normal" days!  Reagan's eating still isn't up to par, but we were told that it might take her a few days to adjust after the feeding tube.

HOME!!!!!

Title says it all.

SO thankful to be home.

SO incredibly grateful for all the support, prayers, and well-wishes that we have received from everyone during this very difficult week.

Praise God!

Today, I'm going to make things as fun as possible for Ryan... he leaves tonight for the beach with G-mom and G-pop.  I will miss him terribly but at the same time, I am grateful that it will give me time to focus on Reagan and her needs this week.

Today, Ryan decides the schedule, so he chose a visit to Ultimate Playzone.  We also have a free intro Martial Arts class called "Preschool Pandas."  I'm hoping he loves it, because I think the need to follow directions and listen while performing a physical activity would be really good for him.

Ryan before school yesterday morning.  "Are you done taking pictures yet, Mom?"

RK just prior to discharge.