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.

My Bees' 1st Halloween

Halloween was kind of boring for us.  The bees are too small for trick or treating, so that was out.  Due to the risk of colds, flu & RSV, we chose not to go to any local fall festivals or church carnivals.  I had resigned myself to the fact that the bees were just going to have a "My 1st Halloween" onesie and that was the end of it.

Aren't they cute???  I could have been happy with just this, but about 2 weeks before Halloween I was doing some online shopping.  Between work and spending time with the bees, I rarely have time to shop for anything more than groceries and household items.  Online shopping is becoming quite addictive!  While shopping for some long sleeve outfits for the boys, I stumbled across the cutest costumes for the bees.  They were on sale, I had a discount code and free shipping.  I got both outfits for less than $15 and couldn't resist.  

Honey Bee agreed that Chunky and Itty Bitty were cute, but says that next year we need something "more manly".  

Friday, November 4, 2011

Favorite Things Friday

Now that the bees are getting older, we are starting to use some new stuff with them.  Here are a few of my favorite things that we use on a regular basis:

NoseFrida - I had read on other blogs how great the SnotSucker is, but honestly the thought of it grossed me out.  Still does kind of.  But OMG!  The amount of snot I get out of the bees' nose is unbelievable.  Chunky Bee had his first cold a few weeks ago and the NoseFrida was my last-ditch effort before going to the pedi.  After a few days of saline and sucking, all better.  I even asked Honey Bee if he thought I could use it on myself when I caught Chunky Bee's cold.  ::Insert blank stare::

Sleep Sacks - Chunky Bee has been unswaddled for a while now.  The thought of SIDS scares the crap out of me, so I didn't want to use a blanket in his crib.  The sleep sack is a wearable blanket.  It keeps baby warm, but doesn't pose a suffocation hazard.  We have 2 right now, but need to purchase a few more because we're breaking Itty Bitty of the swaddle in the next week or so.

Gerber Puffs & Lil Crunchy Veggie Sticks - Chunky Bee is doing great with solids.  Itty Bitty Bee is only slightly interested, but is getting better.  I've been offering Chunky some puffs to help with his fine motor skills.  The puffs dissolve in baby's mouth and stick to slobbering hands well.  Recently, I tried him with Gerber Veggie Sticks.  The kid was smacking because he liked the taste so much.  He even started crying when he was out of them on his tray.  Of course being the great mom that I am, I have sampled both of these.  I mean if they taste badly, how can I expect him to eat them?  Both varieties are quite tasty.  (Sidenote - We've tried the Peach Yogurt Melts and neither of us are a fan.)

Sound Machine - This sound machine is SO soothing.  The bees' received it as a gift after they were born.  Initially I thought "We'll never use this.  They have mobiles on their cribs" I was wrong.  While Itty Bitty was still in the NICU, I took it in an placed it in his bed.  He was in a private room and I felt like he was alone so much that it would be nice for him to have music.  A bonus of this machine is that it also has image discs that display scenes on the wall or ceiling.  Each day when I arrived, Itty Bitty was either asleep with the machine on or wide awake watching the fish or sheep.

Now that both bees are at home, we have the machine in the nursery.  It plays 3 different lullabies and it has 3 nature sound setting.  The thing that makes this better than their mobile is that it has a timer.  We can "set it and forget it".  We put the bees down drowsy, but not asleep.  The soothing music in combination with the dark room is the perfect sleep scenario for the bees.

What are some of your favorite things?

Thursday, November 3, 2011

National Prematurity Awareness Month

November is National Prematurity Awareness Month.  As we move through the month, I plan to dedicate several posts to prematurity awareness.

Thursday's Tidbits

When I started this new blog, I had great intentions of posting at least 5 days a week.  Well, it seems as if I'm failing.  I vow to myself, my bees and my (few) readers that I will get better.

Lots of things have happened since my last post...

  • The bees had a weigh in yesterday while receiving their monthly Synagis shot.  Chunky Bee is up to 15lb12oz and Itty Bitty Bee is up to 8lb14oz.  
  • Both bees had a follow up appointment with their opthamologist.  Both were at risk of eye disease as a result of their premature birth, but Dr. E said they both have "perfectly healthy eyes".  Yay!  We don't have to go back until they are 2 years old.
  • Honey Bee and I had a stay-cation last weekend.  We stayed at a golf and spa resort in town.  It was nice to have an adult dinner, a few drinks and a full night's sleep.  I mean from 11ish until 10ish.  I was so well-rested.
  • The bees are getting much better with solids.  Chunky Bee is getting oatmeal and fruit or yogurt for breakfast and both bees are getting dinner.  Itty Bitty is a picker eater, but he seems to love sweet potatoes and peach yogurt.  The kid may turn orange, but at least he's eating.
  • The whole family ventured out a few weekends ago.  We went to zoo.  I figured it was a safe bet since it was open air and people wouldn't be in the bees' faces.  Princess Bee had a great time.  She got to feed the giraffes.  I got some great pictures while we were there.  Hopefully I'll get around to downloading them and will share them.
Those are the highlights of the last few weeks.  Of course there was the bees' first Halloween, but that deserves a post all on its own.  Also, we have some big stuff coming up with Itty Bitty - more details to come.

PS - Congrats to my friend, Megan on the birth of her little girl, Piper.