Friday, March 11, 2011

Children's Appointment

Weight: 17 lbs 2 oz
Length: 26 in (grew an inch and a half!)

On Monday night we packed our bags and made our way down to Little Rock for Samuel's ACH check-up and swallow study.  It's never easy traveling with him (maybe it's not easy traveling with babies in general) but he did better than I thought he would.  I always feel like I'm packing our entire house......formula, bottles, snacks, booster seat, clothes, oxygen tubing, monitor, tanks, thickener, medicines, blankets.....etc.  And that's just him.

That night we stayed at the Stegers house...the couple who housed me during our 4 month stay in Little Rock.  It's so nice to have a safe, quiet, clean environment for Samuel.  Hotels are far too dirty for my liking.  He woke up for his bottle around 3:30am.....about the same time I would call the NICU during the night to check on him.  Some nights I would call then lay in bed for hours unable to go back to sleep and feeling awful.  Holding him, healthy and beautiful, made my heart so happy.

The appointments the next day went very well.  He wasn't allowed to eat 3 hours before his swallow study but it ended up being about 7 hours by the time he was fed.  He didn't care much for being strapped into a chair AND being forced-fed (and I didn't like trying to feed him during the hysterical crying either) but besides that, the process was very interesting.  On a screen, above Samuel's head, you could see a profile view of his face that looked just like a moving x-ray.  I fed him a bottle of punch flavored barium, and as he swallowed, you could see the barium go down his throat.  I was pleasantly suprised when they told me that he was protecting his airway when he swallows and that we could start weening him off the thickener.  YAY!

Later in the day, we discussed his growth with Dr. Lyle in Medical Home Clinic.  In a little over two months, Samuel gained 2.5 pounds and grew 1.5 inches.  It's not the 2 pounds a month that we were averaging, but it's still acceptable weight gain.  The inch and a half growth in length, however, is phenomenal!  HE IS ON THE GROWTH CHART FOR HIS ADJUSTED AGE!!!  WHOOHOO!  Sure, he's in the 5th percentile, but he'll catch up.

No one had any answers about why Samuel is refusing his bottle and never seems hungry.  They are hoping the gastroenterologist will have some answers when we see him at the beginning of April (reflux? constipation? motility problem? intestinal stricture?)  In the meantime, I've been given the go-ahead to try Samuel on cow's milk+enfacare (to increase the calories) OR I can try Pediasure.  There are so many great things about Pediasure that I'm excited about.
Samuel likes the taste.
I don't have to thicken it.
It's 30 calories per ounce (verses the 26 cal/ounce that he was getting with his formula.)
It's lactose and gluten free.
It's REALLY easy.  I take the lid off, put a nipple on, and feed him.  Easy peesy.

Crossing my fingers that something will work!

Dr. Lyle seems optimistic (like everyone else) that Samuel will be off the oxygen soon.  No one is quite sure why he is still needing it at all.  We have been told several times (from ENT and from the swallow study results) that Samuel has large tonsils.  Dr. Lyle thinks that Samuel may have to have them removed before he'll be able to come off the oxygen.  We will probably wait to see what ENT thinks when we go to our appointment in May.  In the meantime, another Echo has been scheduled for Samuel's make sure that it isn't working too hard. 

It looks like Samuel may not need surgery on his hydroceles after all.  However, they may go ahead and drain them if he has to have his tonsils taken out (since he will already be sedated and on the ventilator for that.)  I'm hoping he won't need either surgery.

1 comment:

  1. Yay for good news! Lillian never liked the swallow studies either. We almost didn't get it done at all the second time, refusal!

    Hoping he'll come back with positive answers for feeding problems. Both of mine went through a stage where they just didn't want to eat. Little buggers!!