Tuesday, September 25, 2012

TAT - Things I Actually Say

I'm joining up with Melissa over at Growing Up Geeky for this week's Toddle Along Tuesday.  Today's topic is "Things I Actually Say".  In no particular order:

  • Who pooped?
  • JS, where'd you hide my phone?
  • Code Brown!  
  • No, don't bite my toe.
  • Don't stick your finger in your nose/ear/belly button.
  • Leave your brother's belly button alone.
  • Don't pull daddy's chest hair.
Never a dull moment with two toddlers.

Jumping back in

It's been several months since I last blogged.  Family, work, LIFE...they just all got in the way.  I started this blog as a way to document our life together.  I still want to do that.  Some things have happened recently that have caused me to "wake up" and realize that I don't want to forget anything about my life, my life with Honey Bee or the lives of my baby bees.  Life's just too short.

What's new at the beehive?  Well, Princess Bee is now 7.  We had her "Sweet Shoppe" birthday party just this past weekend at the local park.  There was cake, ice cream, and a candy bar for all the guests.  The candy bar had old time candy -- wax bottles, thin sticks, whirly suckers, cotton candy, gumballs.  It was a big hit!

The little bees are doing well.  They are 18 months old and into everything.  Chunky Bee is around 23 pounds and is on the go.  He's walking everywhere (he can even walk backwards!).  He has 2 teeth and is working hard on several more.  He isn't a big talker, but says "da-da", "hey", "uh-oh" and "tank tank" (thank you) on a regular basis.  No "momma" yet, but it's not for a lack of trying on my part.

Itty Bitty isn't so itty bitty any more.  He's around 21 pounds.  It's amazing to compare pictures from this time last year to now.  I sometimes forget how small he really was.  He's crawling everywhere, pulling up and cruising along furniture and starting to stand independently for longer periods of time.  His PT thinks he will be walking very soon!  He's my talker -- he babbles nonstop.  And shrieks.  Very loudly!  He can say "da-da", "bye bye" and "uh-oh".

Something that we started doing with both boys was simple sign language.  Since they are at risk for being delayed and because boys generally talk later than girls, we thought it would be good to help them communicate without words.  Chunky uses more signs than Itty Bitty, but we consistently use "more", "please", "thank you", and "bath" with them.  It's one of the cutest things you'll ever see.    If you're interested in sign language for your little one, check out Baby Sign Language.

More to come. Soon!

Tuesday, January 17, 2012

Blogging is hard!

Blogging regular is hard.  I usually use my down time at work to read blogs, catch up on message boards or research our newest "preemie" issue.  Lately I haven't had much downtime.

So what's new with  me and the beehive?

  • Itty Bitty's g-tube may be the best thing ever.  He's gained 4 pounds in 6 weeks.  That's 1/4 of his total week since the tube was placed.
  • Chunky is on the move.  Crawling everywhere!  He's also become quite the momma's boy.  If he's awake when I leave for work, he cries.  But the upside of this is that when I open the door after work, he crawls at warp speed to get to me :)
  • Honey Bee did quite well his first semester in RT school.  Only 4 more semesters and then he can get to work.  Have I mentioned that he's already been  offered a job in the bees' NICU?  Pretty awesome, right?
  • The beehive had a great Christmas.  All three of the bees racked up on gifts.  We are blessed to have family that loves to spoil our kids.  I'm sure it may be a curse in coming years.
  • I've stopped pumping - WOO HOO!!!  Chunky has been on 100% formula for several months and is thriving.  We've recently discovered that Itty Bitty has milk protein sensitivity.  For me to continue pumping, I would have had to make some major changes to my diet.  I decided that for my sanity, I would stop pumping after 9.5 months.  I fee quite accomplished for making it that long.
  • I'm participating in a 366 Challenge.  It's Day 17 and I've missed only 1 day so far.  Lots of pics to come :)
There's lots more to share, but that's just a quick update.  I'm not going to promise to get better at blogging, but I'm going to give it my best shot.

Tuesday, November 29, 2011

Shining the spotlight on Itty Bitty

Itty Bitty was born at 1lb7oz, 11.5 inches long. From his shoulders to his feet was barely longer than my hand.  He was so tiny.  He's still tiny for a 8.5 month old baby.  Right now he weighs about 9 pounds.  Tiny, right?  Well, things are about to change.  Let me give you a little back story...

When the bees were born, both of them were intubated, received surfactant, and monitored very closely for breathing patterns and blood oxygen saturation.  Even though I had received 2 rounds of steroid shots to mature their lungs, these things were expected and normal.  Chunky Bee was breathing on his own without any support with in 48 hours.  Itty Bitty didn't fair quite as well.  He was intubated for just over 48 hours and then moved to a nasal CPAP machine.  Later that week, he was off the CPAP and was receiving extra oxygen in his isolette.  All things seemed to be moving in the right direction.  Then when he was 1 week old, Itty Bitty went back to the CPAP, had a complete work up including a lumbar puncture, and was put on antibiotics for a suspected infection.  Luckily there wasn't an infection, but we played this game time and time again.  After 28 days (4 weeks) of receiving oxygen support, Itty Bitty was diagnosed with BPD, a chronic lung condition in children.  Very common for micropreemies like Itty Bitty.

Eventually, Itty Bitty gained enough weight to be moved to an open air crib (aka "Big Boy Bed") and was started receiving oxygen support via a nasal canula.  At this point he was about 3 months old.  I just knew he'd be home in no time.  I was visiting Itty Bitty one night while Honey Bee stayed home with Chunky Bee & Princess Bee.  Itty Bitty seemed "off".  Not fussing, not sick, but just not himself.  I talked to his nurse and she convinced me to go home and she would talk to the doctors when they rounded at 10 pm.  She promised to call me after rounds.  I agreed -- I mean I had 2 other kids at home that needed me as well.  The nurse, L, convinced the doctors to start with Itty Bitty because she knew I was waiting up for the phone call.  She called around 10:15 and told me that the attending wanted to run a new test on Itty Bitty because he thought he may know what was going on.  At this point, Itty Bitty was receiving 1 Liter of oxygen at 65% per minute {I realize this may not mean anything to you, but you'll see the importance very soon.  Stick with me.}  Around midnight, one of the NICU doctors called and told us that Itty Bitty had been moved from the Continuing Care Nursery (for feeders & growers) back to the NICU.  The test they run showed that Itty Bitty had developed Pulmonary Hypertension.  She went over the meds and therapies they had started to treat it.  She assured me that they caught it early and had a handle on things.

Fast forward to noon the next day...Honey Bee and I go to visit Itty Bitty and he is the sickest I've seen him since birth.  He was still on his nasal cannula, but was receiving 7 Liters at 100% per minute.  A huge jump in just over 12 hours.  Luckily, the meds and therapies helped Itty Bitty get better quickly.  He stayed in the NICU for at least a month after this because I would fight the staff every time they suggested he was ready to go back down to CCN.

After 4.5 months in the NICU, Itty Bitty was discharged.  He came home on oxygen and a cocktail of medicines.  But he was finally home!  No more visiting my kid at the hospital.  At discharge, Itty Bitty weighed 6lb12oz.  Today he weighs in around 9 pounds.  We've been told from the beginning that healthy weight gain is what will help Itty Bitty outgrow his BPD and PHT.  Well, 2.5 pounds is really not much progress in 3.5 months.  So after talking with several doctors and doing TONS of research, Honey Bee and I agreed to let modern medicine intervene again.

Itty Bitty had surgery last week to have a feeding tube place.  On average, Itty Bitty would take 12 oz of 27 calorie breastmilk per day.  Now that he has his feeding tube, he's taking in 21-22 oz per day. After he goes to bed for the night, we hook him up to a feeding pump.  Right now, he's getting about 10 oz per night over the pump.  It goes in at a slow rate and he seems to be doing well with it.

I'll share later about the type of tube he has and how easy it is to use (well, so far at least).

Friday, November 18, 2011

My birth story

If you've spent much time on message boards or reading blogs, it seems that everyone writes her birth story shortly after her baby(ies) are born.  I guess for most people it's joyous and they can't wait to share the tale of how their little one entered the world.

Well, I'm not most people.  I've sat down many times to "write" my birth story.  I say "write" because I know how it happened.  I'm not a writer of fictional novels and tales.  Writers develop their plot, they have the "perfect ending" in mind.  My storyline didn't go as planned.  The birth of my bees was not "storybook perfect".  I had NO control of when and how my bees entered the world.  I had NO control over the first few weeks of their lives.  There are still many things with Itty Bitty's health that are out of my control.

When I've attempted to put the story into words, I get stuck.  I can't find the right words to describe the overwhelming feelings of pain, fear, anger and jealousy that I felt when I found out the bees would be born 10 weeks early.  I had just over 48 hours to brace myself for the fact that I would have two micropreemies, send months going back and forth to visit my children in the NICU and to mentally prepare for the challenges we would face.

I'm not ready to put it into words.  The bees are 8 months old.  I've holding it in for 8 months and I keep telling myself "Oh, I'll write it down next week...", but it never happens.  Hopefully as we overcome some major challenges in the coming weeks and months, I will finally be able to "write" my birth story.

Thursday, November 17, 2011

World Prematurity Day

I've been thinking about this post for a while now.  I've thought about the various angles to write from.  I've thought about all the facts about premature births that I should help spread.  I've thought about this post a lot...

Today I am wearing purple.  I'm honoring my little bees and their fight for life.  I'm remembering babies that were born too soon that didn't win the fight.  When I think about that possibility for my bees, a knot instantly forms in my stomach.  I wonder why were my bees able to be saved, but other babies aren't.  How did Honey Bee and I get so lucky?

Being a parent is not easy. There are sleepless nights, long days, cries that won't stop.  Being a mom to twins means double the sleepless nights, long days and crying.  Being a parent to multiples is not easy.  But, when you add the "preemie" label to the mix....sometimes it can feel dang near impossible.  On top of the sleepless nights, long days, and crying, you have countless doctors' appointments, you have winter hibernation, you have a newborn MUCH longer than intended.

It IS hard, but it is SO worth it.  I get to celebrate each milestone with each of my bees.  I get to experience "baby's first (insert something silly here) twice in a short amount of time.  I get double the toothless grins.  I get double the belly laughs.  I get double the snuggles.

My bees have come a long way since their early arrival.  I marvel at the strides that they have made and often find myself asking "what happened to my 5 pound baby I brought home?".  I find myself dreaming about their future.  What will they be when they grow up?  Will they play sports?  Will they be into the arts?  Will they be in the band?  Will they be nerds?  What if one is a "cool kid" and the other is a nerd?  Will they get married?  Will I be a grandmother someday? (Sidenote - if yes, please remind me how insane my mother and mother in law can be at times.  grandparent = a little insane)

As I think of all these things, I find myself overwhelmed with feelings of thanks.  Thanks to my OB who sent me to the MFM "just to be on the safe side".  Thankful for the MFM who I met and admitted me to the hospital within 30 minutes.  Thankful to my nurse in L&D, Miss Myra.  I don't even know her last name, but she was an angel on the day of my admission.  Thankful to my college roommate, Ashley, who is a Nurse Practitioner at the NICU where the bees were born.  Thankful to the MFM that safely delivered my bees.  And thanks that I cannot begin to describe to the neonatologists that worked feverishly on my bees after their birth, and continued to work for them day in and day out.  Another group that I will forever be thankful for are the nurses in the NICU.  They are the ones that know your baby, sometimes better than you.  They are the ones that know you by name.  I was never "Mrs. Bee" to them, rather I was "Bridgit".  They were the ones that took care of my bees when I couldn't.  They cared for my bees when I wasn't able to be at the hospital.  They were most often the ones the shared the big news - Chunky Bee is on room air, Itty Bitty Bee has been moved to CPAP from the vent, Chunky took his whole bottle for me, Itty Bitty had a clear brain scan....the list goes on and on.

Today I am thankful.  Although it is not the life I would have chosen, I can't imagine it any other way.

Monday, November 7, 2011

National Prematurity Awareness Month - Part 2

Did you know:

  • 1 in 8 babies in the US are born premature.
  • The US preemie rate has grown by 36% in the past 25 years.
You can make a difference!  You can volunteer or donate to the March of Dimes.  Be the difference you want to see!  Your gift of time, money or support can help babies like this:

become this:

November 17th is World Prematurity Day.  Honor the 12 million preemies that fought to survive and the over 1 million that died this year.