A New (ab)Normal

November passed by entirely too quickly, but we absolutely loved having an entire month (mostly) home with Teagan.  My apologies for not updating, and thank you for giving us the time to just enjoy being with our little girl.  I think when we were in the NICU, we were so focused on going home that it seemed like this magical time when things would be quiet and peaceful.  Oh, the sleep we would enjoy, the books I would read, the blog posts I would update on a regular basis.  We. Were. So. Wrong.  It's great, don't get me wrong, just not what I expected.  (This last part should be a preemie mom's personal mantra, and it doesn't stop when you leave the hospital.)

Tiny Teagan in her HUGE crib

Teagan, just like any newborn baby first home from the hospital needs to eat every 2-3 hours.  She is getting better about letting us know when she's hungry, but usually we have to make the suggestion, otherwise she doesn't eat enough.  Yes, I assure you, she is my child despite that.  She also needs diapers, baths, burps, tummy time and all the attention we can spare in between.  A full time job to say the least.  Just like normal new parents - we're learning to operate in a fuzzy, happy, sleep-deprived state most of the time.

Nom nom nom

Unlike most babies, Teagan has a "care team" - pediatrician (Dr. Dave), a nurse that comes to our home to weigh and measure her (Donna), a pulminologist (Dr. Ong), a pulmonary nutritionist (Elena), a physical therapist (Nan), and a speech and feeding therapist (Kim).  And all the appointments that go along with them.  We usually have at least two appointments a week.

Teagan is healthy and doing fantastic.  She weighed in last week at 9 lbs, 4 ounces.  She is still on oxygen round the clock for her BPD, we're hoping to move her to "nights-on, days-off" later this month.  We started her on reflux medication for her GERD (acid reflux), which has helped a lot.  We also switched from Pampers diapers to Gdiapers, which have helped her diaper rash TREMENDOUSLY.

The "g" is for "gangsta"

She  started Synagis treatments, to help prevent her from getting sick and going back to the hospital.  With these shots we've felt a little easier about taking her out a few places that are not crowded. I carry hand sanitizer and a sign that warns people before touching.

This little bear wants to GO!!!

I started back at work full time this week as planned.  Ian started back at work full time the week before...NOT as planned.  We originally had thought that he would be able to take a full three months off to take care of Teagan, but he was given a promotion at work (Thank you, AAA!) and he had to go back right away.

FREEDOM!!

Um, you're probably asking, who does that leave in charge of the baby?  Well, it took a little training, but we finally have Edward able to change a diaper and warm up a bottle.  JUST KIDDING. 

It's WHOSE turn to change the diaper?

We had a very difficult time figuring out child care because of Teagan's immunity, oxygen and feeding requirements.  We really didn't like the idea of multiple-child caregivers because of her compromised immune system, and most wouldn't offer to take her because of the liability, care and time involved in taking care of her.  Most individual care takers were either completely unqualified or so expensive it would not have made sense for both of us to keep working.  So we hired Ian's younger sister, Stephanie,  who has prior experience taking care of babies to move to the area and care for Teagan during the day. 

Needy?  Who, me?

I spent all last week with Stephanie training with her to take care of Teagan.  She is doing a wonderful job!  It gave me a whole new appreciation for the nurses at the NICU teaching new parents how to take care of preemies, though.  Finding a caregiver with an open mind for care techniques and unending patience is a must.  We are very lucky Stephanie has both.  It also takes a good deal of communication.  Ian devised a printed chart broken down by half-hour that allows both us and Stephanie to log feedings, medications, diaper changes, exercise and bathing.  This way we can quickly tell how the day is going.  It has worked really well so far.  I've shared it with the rest of Teagan's care team and they have all been impressed.

Yeah, you know you're jealous

Teagan also may have gotten her first (tiny) taste of Christmas cookie frosting.  It may have been just gas, but she smiled SO HUGE!!!  That's right, we start the sugar addiction early 'round here.  I'm excited to start working on her Christmas tutu and take some Christmas photos!  I'll make sure to share in the next few days....stay tuned!!!

Sooooo many cookies.....

The Home-Coming Dance

Has it REALLY been a month since my last post????  My apologies, but OH WHAT A MONTH!!!  Here are the highlights!  We officially passed our hearing test...

Ready to rock, mom!

Tubular Bells always puts me to sleep

And spent a lot of time just waiting and growing.  We couldn't seem to get past needing the oxygen, even just a small dose.  And while we started taking some feeds by bottle, Teagan developed severe reflux, so feeding took a very long time when we could get her to take the bottle, so most of the time we had to gavage feed her through the tube in her nose.

Her due date (October 1st) came and went.  We celebrated with a book of Shel Silverstein poems (which are hilarious and entertaining for adults, too!).  We hit 5 pounds, then 6.  We passed our 100-day-mark in the NICU.  But without being able to take feeds by bottle or stay off oxygen, it didn't look like we were being sent home soon.

Waiting...

  Ian and I spent our first anniversary in the NICU.  We figured it was appropriate since we have effectively spent a third of our marriage at Evergreen.  I found an electric candelabra in the gift shop, we covered the table with swaddling cloths and ordered Italian.  It was so much fun! 

The finishing touches...

The best part was no dishes!

 My fantastic colleagues at Conover Insurance threw a baby shower complete with a diaper cake and the most amazing black forest cake I have ever seen.  The nurses at Evergreen were SO appreciative of the leftovers, though I had to think twice about not eating it all myself!!!  Thank you all so much!!!

 

 We started dressing fashionably for the season....

Scary cute!

Lil Monster

Creepy Crawler

Teagan started getting restless in her crib, so we picked up a jiggle chair for her that bounces gently with her weight and vibrates softly to put her to sleep.  She was a little nervous at first, but it quickly grew on her!

What are you doing to me NOW?!?

 Teagan wasn't the only one getting restless.  Four months of waking up early, going to work, going to the hospital, getting home late, getting up and doing it again was getting to all of us.  Our poor pug, Edward, had been riding along with me in the car all day every day faithfully and we would let him out to feed and walk him periodically.  Finally our good friend Chris took him for a few weeks to give the poor guy a break.  Thank you, Chris!

It was getting to Ian and I too.  Luckily we seemed to take turns "hitting the wall" so to speak, and could each help the other through.  Having a good sense of humor definitely came in handy!

I was BORN to take the car seat test!

Finally the doctors started telling us that if Teagan went much longer without being able to take her feeds by bottle, that they would teach us how to insert the gavage tube and send her home.  We had come to accept that she would be coming home on oxygen, but we really didn't want to do this too, if we didn't have to.

Ian decided to start his paternity leave early and stay 14 hours plus per day at the hospital until she came home, working with her to get her to feed.  She seemed to take bottles better for us than for some of the nurses.  It worked.  The following Thursday they told us she would come home THAT weekend.

Actual sign in Teagan's room

PANIC!!!  I freaked out a little at first, you never feel that you are completely ready, but as I went over things, everything was do-able.  We learned how to mix her formula with extra calories to keep her weight up and with thickener to help with her reflux.  Jan, our fantastic physical therapist, built her a soft foam wedge to sleep on to help with the reflux too.  We spent the night a couple of nights at the hospital, went home Monday morning to install the home oxygen and learn how to use it and the pulse oximeter (measures her heart rate and her blood oxygen level) and then went to the hospital to pick up Teagan and finally take her home.

We might have had to 'move out' a little...

NICU parents get so few "normal" baby experiences, that just the act of carrying her out to the car, waiting with the nurse while your husband pulls the car up to the circle drive, putting the car seat in the car for the first time...it's pretty special.  Even looking like complete idiots figuring out how the car-seat actually goes in and how the stroller actually collapses despite plenty of practice beforehand.  Yup, special.

So now we are home, and it has been a week!!!  We have re-arranged the house for the oxygen tanks and the "Formula Concoction Station".  We alternate sleeping and setting alarms.  Teagan doesn't wake up and cry for food, so we wake her up and feed her every 3-4 hours.  We have what was possibly the worst diaper rash known to man under control thanks to a home remedy from Grandma Sandy.

Our first walk outside!

Relaxing on the couch

Teagan with her faithful guard-pug

 We brought Edward home a couple days later andhe has been wonderful.  He wants to be everywhere Teagan is.  If she cries, he checks on her then comes and whimpers at one of us.  He lays right by her while she's in her jiggle chair.  He's even given her toes a quick lick if she pokes them out of her blanket.

Now we begin relationships with a whole new set of doctors.  We have visited the pediatrician, Dr. Dave twice now.  He is awesome.  We will have a nurse come to our home every week to weigh and measure her so we don't keep taking her to a doctors office where other sick kids might be.  We will meet with a pulminologist for her BPD and a physical therapist to make sure she keeps developing properly.

Tucking in for the night

We welcome well visitors that have not been ill for the past two weeks or have not recently been in contact with an ill person (just let us know you'll be visiting so we won't be napping!).  We will gladly squirt you with hand sanitizer.  :)  We should be able to take Teagan out for short visits in a couple of months, once the worst part of flu season has passed.

Thank you all for keeping up with our incredible journey, and I will keep updating this blog as new things develop!

Three Months, Already?!?

I know - it's hard to believe for us too!!!  Little Teagan is already a quarter of a year old!  Crazy!  I will have a very special addition to the blog for our 100th day in the NICU.  Stay tuned - it's coming up soon!


Wait, I'm HOW old?!?

What does a three month old get for their birthday, you might ask?  Well, it's not so different from what most big girls want for their birthday!

Breakfast of Champions



What do they PUT in this gunk?

 A nice meal with family.... 

Someone to throw up on when you've had a bit too much...

We have a new definition of "hot mess"

 Maybe spend a little time recovering at a spa....
 

OMG look at that cute tushie! (yes, I went there)

  

Now THIS is the life!!!

 

So relaxed!

 And then to bed all snuggly in a brand new outfit.... 

AAAANNNNDDD we're out.

 This week we are done with the EPO treatments - both hematocrit and retic counts look good and blood oxygen levels keep improving.  Her color is starting to look much healthier too - no more blaming her paleness on Mommy and Daddy's complexions!  She is just over 5 pounds.  Yes, she put on a whole pound in a week.  Which seems like a lot until the nutritionist told me she is in the THIRD percentile for a 38 week-er.  Her head circumference is 32 centimeters.  She is still on Iron and Vitamin D and 26 calorie formula to help pack on pounds, er, um, ounces.  We've gotten her oxygen flow down to a 64th of a liter, which is the lowest pressure available.

Next steps will be working on bottle feeds - moving up to 2 back to back feeds at a time instead of every other feed with a bottle.  We should also be off the nasal canula in the next week or so.  Still at least a couple weeks out from coming home, though.  But we are pretty much ready (as much as we can be) for when she does!

She With The Most Toys...

We've had another big week of growing!  Are you ready for this?  Are you sitting down?  Okay, here we go..... FOUR POUNDS.  Teagan has officially quadrupled her birth weight.  A-ma-zing.  And we have the double chin to prove it.

Um, those would be "phat" rolls, gangsta.

I'm worth every penny!

She was having some problems with making enough red blood cells and her bone marrow count (hematocrit and retic lab tests), so she started getting Epoetin, or Epo, three times a week.  Even though she does NOT like the shots, after a week of treatment, her blood counts are already looking better.  We should have another week or so of shots and should be good.  Have I thanked insurance lately?  The shots are $1500....EACH.  Yikes!

She's also getting to the point where her eyes are developed enough to start having some visual stimulation around the crib, so we picked up some fun toys for her to focus on.  Ian of course found a Baby Einstein mirror that automatically makes your child a genius by virtue of some classical music it plays.  Apparently it does not work on parents, because we couldn't find the off-switch.  There is something distinctly hoity-toity about shopping to a personal soundtrack of classical music, so Ian and I slipped into our snooty alter egos "Muffy" and "Reginald" for the remainder of the shopping trip.

Enough with the Bach!  Break out the Stones!

The mobile that Mimi brought for Miss T did not have an arm to attach to crib, but that didn't stop the uber resourceful nurses at Evergreen!  They helped us rig it from her IV drip, right in the line of sight.  Perfect!  Here's some pictures of our room at the hospital.

Home away from home.

What is THAT?!?

Our family board with Teagan' cards, etc.

We call it a "Pugaboo"

 Our wonderful neighbors gave us a stroller that their granddaughter had outgrown.  But not just any stroller - oh no.  This is Princess Teagan's ride we're talking about here and nothing but the best will do.  Teagan will be chauffeured around in her very own Bugaboo.  I've done a fair amount of research on the best stroller to get a preemie and I am SO STINKIN' excited about this one I sounded like a used car salesman rattling off features to Ian when we got it home.  Inflated tires!  Lightweight!  GPS!  (Okay, maybe not, but I'm looking into HD radio).

And, because just one ride is never enough for a true princess...Mommy sadly traded in her trademark Jeep Wrangler.  Goodbye, Black Pearl, I will miss you.  In a couple of weeks, Teagan's new transport will arrive in time to take her home in style....a 2011 Nissan Juke! Our thanks and apologies to anyone that listened to Ian and I trying to decide on the "perfect" car and felt the need to go bang their heads on something repeatedly afterwards.  But seriously....it's pretty.  Like a little AWD spaceship.  And red.  Edward was most helpful in negotiating.  Everyone at the dealership loved him.  And if you're in the market for a Nissan - the guys at Stadium Nissan are great.

Does it LOOK like I want the extended warranty?

Shiny!

Next is getting Teagan to take her feeds by bottle.  We are weaning her onto formula slowly because Mom, a.k.a "Bessie" has reached the end of the production line.  She's taking to the formula well, and as one of the doctors in the unit says "I'm a formula baby, and I went to Harvard." (He could be the poster child for Enfamil).  Teagan has to be able to take all her feeds by bottle before coming home.  So far, she can handle one a day and it wipes her out.  We'll keep trying though!  Thank you for checking in and stop by again soon!

Nom Nom Nom

Three, Oh...It's a Magic Number

This has been a big week for Teagan!  She has hit THREE POUNDS!  I know that doesn't sound like a huge number - but in preemies, I can assure you - it's a very big deal!  She's starting to put on some definite "baby weight" and is cuter every day.  I'm a little biased, though.  She did need to go back on her nasal canula - she's off oxygen, but still needs just a little puff of air to remind her to breathe.

I had a seminar in New York late August, which is part of why this post is a bit delayed.  It was worth it, though I missed Teagan and Ian a lot.  I experienced my first ever earthquake (aftershocks) on Wall Street and evacuated down 30 flights of stairs in the Chartis building in bare feet.  My feet are still crazy swollen from the HELLP syndrome, and while I didn't have one - I certainly could have used a drink!  And I gained the experience of traveling through JFK with a carry-on breast pump.  Just leave it to say I had some 'splainin to do with the security guards!

 I got back in time for a little get-together godmom Sydney threw!  We had a pot-luck BBQ and got to see lots of friends and family!

Lovely day for a party!

Teagan's First Louis Vuitton!  Glam Girl!

Building Teagan's Library!

Sydney's Onesie Cupcakes

Ian had a long day at the grill

 Teagan also started wearing clothes!  This onesie is a little on the big size, but she's getting the idea.

Um, I might need the EXTRA small...

Hi!

I's hiding in my tulip hat...

 In addition to her nasal canula giving her that little puff of air, her feeding tube has been moved to her nose as well.  She is getting about 34 mL of milk with fortifiers over 30 minutes every three hours.  She has also been put on a "strenuous" physical therapy program with a pacifier.  We're trying to build up her ability to suck, swallow and breathe so she can start bottle or breast feeding.

Perhaps a binkie?

Nothin' doin - it's nap-time

This is one of the last videos of Teagan in an isolette!  And one of the first of her in clothes!  She's just on her canula and her nasal feeding tube.  The wire around her foot measures her blood oxygen levels and the green, black, and white small wires measure her heart rate and breathing.  It seems like a lot, but we're working on getting rid of the canula and the feeding tube!

Teagan has been doing really well with her stats, too.  No apneas or bradys for the past couple days.  Her eye exam showed a level 1 ROP - that's scar tissue built up on the retina in her left eye.  It often happens in babies that are on oxygen for a long period of time and at level 1 is just monitored.  If it increases, then we start treatment to avoid blindness.  We should have another eye exam in about a week.  She has been such a little trooper.  The exams are really hard on her eyes, I have to leave the room while they do the exam.  She also had her first vaccinations this week.  We had to wait a few weeks until she had built up enough muscle to give them to her!  She was a little cranky that day but overall handled all the procedures very well.

 

 

Check out my new crib!

And the big surprise this week was moving out of the isolette into a new crib!  This means she is able to regulate her own temperature! We celebrated by bringing her a new blanket and her Twilight Ladybug nightlight that shines the stars on the ceiling for her.  One step closer to coming home - September is gonna fly by!