It ain’t over yet.  But, now we can continue the road to recovery at home.  The Neocate formulao (non-allergenic) has made a significant difference in the amount liquids she has been able to hold down. We observe that she is happy and playful after meals, instead of constant thumb sucking for 60-90 minutes.  Very little reflux gagging after any meals now.  We will be returning home this evening after we can observe a couple more meals.

This leads us to believe there is an allergy that was harming Nevaeh’s stomach over the past month+.  The orders are to remain on Neocate for at least a month to allow her stomach to heal, then re-introduce foods at a slow rate.  Eventually we may give her our growing stock of frozen breast milk.  Allergies (and sensitivities) in children can shift as their immune and digestive systems develop.

Come visit Nevaeh tomorrow! (Saturday May 12)  This is a shameless plug to help us with our landscaping project (installing the shrubs and perenials).  Of course everyone will have some quality time with Nevaeh.

Our next check up will be Wednesday afternoon to check her progress and weight.

Today: 14.94 lbs
Yesterday: 14.92 lbs (no eating 5am – 5pm)
Wednesday: 14.82 lbs
Tuesday: 14.00 lbs

We felt that yesterday was a very good day experimenting with Neocate.  Overnite Nevaeh had a few more feedings of 3 oz Neocate.  The report was that most of this stayed down.  As of 6AM today she is on “no food or liquid” to prepare for a 2PM MRI of the Brain (precautionary).  As parents, we’d like to continue on the Neocate today, but we hear that getting time for an MRI can be difficult.

3pm update: MRI went just fine.  Nevaeh is sleeping and we will give her a meal when she wakes up.  The MRI results came back ‘normal’.

5:30 update: Nevaeh woke up and had a 3 oz serving of Neocate.  She did spit-up a small amount, but we notice after 30 minutes that she’s not instinctively sucking on her thumb.  That’s good.

7pm update: 3.5 oz green beans and 3.5 oz pears.

Tonight: We’ll let the nurse staff feed her if/when she wakes, to keep her moving in a good direction.  Sarah and Chad are planning to go out and purchase the last of our landscaping plants.  Looking for volunteers this Saturday to install plants.  If we are fortunate, Nevaeh will be our supervisor.

Nevaeh has gained back water weight and potentially some food weight.

A good distraction since we haven’t been able to eat since 4am.  Can’t eat until after 2pm MRI

Last Night’s update:  We got Nevaeh hooked up to an IV and within a couple hours, we could see her regain some energy.  She had a solid meal at 4pm and that was held down.

This morning, her skin feels softer (hydration) and she is much more talkative.  She had a soggy diaper this morning also.

We are discussing the tests they’d like to perform today.  We will know more later.

 The Game Plan:

• Try Neocate (non-alergenic fluid)
• Brain MRI scheduled tomorrow at 2pm
• 6 meals per day (3 solids / 3 liquids)

11am update: Gave her 3 oz. Neocate.  She did not like the taste & pushed some back out with her tongue.  She quickly fell asleep for an hour.  When she woke, there was some reflux and a small amount came up.

2:30pm update: 4 oz of Neocate.  There is some spit-up, but doesn’t appear to be the same cause/effect as before.  Will keep trying this to evaluate how effective it is.

5:30 update: Nevaeh had 3.5 oz of green beans and 3.5 oz of pears.  For an hour after this meal she did not once have a gagging response.  Noteworthy: Dad didn’t let her have the thumb (we’ve tried this before however).  She did have some gagging, but not an drop of the meal was lost after nearly 2 hours.  This is exciting… stay tuned!

8:00 update: The nurses gave Nevaeh another 3 oz of Neocate thickened with rice cereal.  Dispite some reflux gagging this all stayed down and she fell asleep within an hour.

At our clinic visit this morning we all felt that Nevaeh isn’t progressing or improving in health.  She continues to lose weight, and her height has stunted in growth also.  The only wet diapers we see are yellow/orange.  We will be going back for another series of tests to help get her back on the right track.

She weighs 14.0 lbs, down from almost 17 lbs back in late March.  She weighted 14 lbs when she was 2.5 months old.