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).