Monday, February 6, 2012
My boys were born at 29 weeks, 6 days.  From their birth, there was a rather large size discordance.  Baby B, Hilyer, was diagnosed as IUGR and the boys were delivered via c-section 2 days after the diagnosis.

Hilyer was born weighing 1lb 7oz.  He was (and is) my Itty Bitty.  After birth his weight dropped to 1lb 4oz, but he seemed to rebound quickly.  He was able to start on small feeds of breast milk (BM) within 5 days of birth.  Initially, he was on 27 calorie (fortified) BM but he wasn't gaining weight as quickly as his brother.  Due to his IUGR and immature lungs, it was explained to my husband and I that his little body was "running a marathon day and night".  Even though he was doing well with the BM, he was burning all the calories just lying in his isolette.  Then the neos bumped him up to 30 calorie (fortified) BM.  After reaching the 4 pound mark, he finally seemed to be on track.  Gaining every day.

When we were given the green light to start bottle feeds, I thought "YES! He will be home soon."  He took his first bottle a couple of weeks after the boys due date.  I just knew that he'd be home in no time.  First bottle was in early/mid June.  He wasn't discharged until July 31st.  That's a long time to work on feeding.  We worked with PT, OT and Speech on his bottle feeds.  Everyone agreed that he could drink from the bottle.  His suck, swallow, breath (SSB) was functioning, but it was just too hard for him and his weak lungs. Everyone kept saying "Once he hits 5 pounds, he'll turn the corner."  Five pounds came and went...."It won't be long now.  He's growing new lung tissue every day."  Six pounds came and went.  After weeks of therapy, one of the speech therapists (our favorite!) suggested something -- pull his NG tube see what happens.  This was a Thursday.  His NG tube was pulled and we went to an on-demand feeding scheduled.  The neos agreed to minimum amount of BM that had to be taken per 24 hours for the next 48 hours.  I roomed in Friday and Saturday night.  If Hilyer was awake, we tried the bottle.  On Friday, he exceeded his daily goal.  Woo Hoo!  Then on Saturday, we barely made it but met the goal.  We were discharged on Sunday morning.  Finally, we were all home and done with the hospital.

We were discharged with oxygen.  Hilyer was diagnosed with BPD after not being able to lose the oxygen support within 28 days of birth.  When we left the hospital, we had follow appointments made for every specialist possible.

You always hear stories about babies that "thrive at home".  I guess it depends on what your definition of "thriving" is.  He was happy.  He slept very well.  But he didn't care to eat.  We had our first weight check on Tuesday afternoon with our pediatrician.  He had gained a measly ounce in nearly 3 days.  Our pedi wasn't too concerned, just chalked it up to adjusting to being at home and being overstimulated.  We went back on Friday -- no weight gain.  Our pedi still wasn't too concerned, but stressed that we offer the bottle every other hour over the weekend and be back on Monday.  What a frustrating weekend!  Back to the pedi on Monday morning.  Up an ounce.  If you're counting that's 2 ounces in a week. Not exactly ideal.

I love our pedi.  She didn't "wait to see" what would happen.  She got our follow up appointment with Hilyer's pulmonologist moved up and they could see us the next Monday.  Part of our pulmonary plan includes a nutritionist and she was quick to mention a feeding tube.  I scoffed at her.  He could eat.  He would eat when he was hungry.  We modified his diet a little to see if it would help.  We watched his weight for the months of September and October.  After seeing very little progress, my husband and I started discussing the possibility of a g-tube.  Finally at our November pulmonary appointment, Hilyer was officially diagnosed as "Failure to Thrive".  What a blow!  He was doing so well at home.  He was happy.  He was getting stronger, but still not gaining weight.  For him, weight gain equals new, healthy lung tissue.  New lung tissue equals FINALLY ditching the oxygen.

After doing my research, my husband and I agreed to the surgery.  In addition to having the g-tube placed, we also had a nissen fundoplication done.  Hilyer's pulmonologist thought he may be silently refluxing and possibly aspirating.

Hilyer had his surgery on November 22nd.  Before surgery he weighed just under 9 pounds.  Since his surgery, we have been feeding him 22 ounces a day.  Initially, we were doing BM and Similac Sensitive.  After a couple of torturous weeks, we finally saw a GI.  He suggested switching Hilyer to Elecare due to a suspected dairy protein issue.  Since the change, it has been smooth sailing.  Hilyer receives about 24 ounces of Elecare a day.  He is fed every 3 hours during the day and then continuously over the pump at night.  Just last week, he weighed in at just under 13 pounds.  Yep -- 4 pounds in just over 2 months!!!

It's amazing how different he is now.  He is full of energy.  He has a double chin and a Buddha-belly.  He's meeting milestones much more quickly.  He talks all.the.time!  Without the gtube, I do not think Hilyer would have broken the 10 pound mark yet.

For us, the gtube is necessary.  How long will he have it?  Who knows.  I hope we're able to ditch it sooner rather than later.  Right now, our main goal is weight gain.  All of our specialists assure me that we can get him to eat when we're not dealing lung issues.  They've been spot on so far, so I just have to trust that they are right about this.

Please stop by the Feeding Tube Awareness page and read the success stories.  They are truly inspiring!


Precious and priceless so lovable too, the world’s sweetest littlest miracle is, a baby like you.

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