I am pretty sure Sloane drank more than me today. Sucking down one cup of JU this am and then she sipped away her second while she wandered around or rather ran around like a busy bee at cuzzy's first birthday. It was my niece's happy birthday today. A very special and fun day for our family...although I do wonder where the year has gone??? I do not understand why these 2 precious babies keeping growing bigger and bigger.
As far as sipping and swallowing goes, it was a Gold Star Day!! She did sneak in sips of H2O in its natural form today. This is a BIG treat and on a daily basis a big no-no. Sloane always prefers liquids in their natural form/not thickened. She tastes the difference and knows which she likes better. We try not to give them to her frequently for fear that she will refuse the thickened JU. And, most importantly, liquids in their natural form in large amounts are not safe for Sloane. Soon enough we hope....she will be able to have thinner liquids. 2 more days on 5oz and then we are on to 5 1/2oz for 10 days.
Cuzzy's birthday party was a BIG bash!! As it should have been. We saw lots of old friends. A few people at the party stated in different words that they couldn't believe how great Sloane looked, how she was thriving, and how healthy she appeared. One person actually said "that's Sloane?" I always feel bad about this. Sometimes I think because people do not understand what a laryngeal cleft is or hear that she has a feeding tube, they think sick/unhealthy/undernourished or pale. Sometimes even physically malformed (a visible hole in her throat). When Sloane was an infant, I wanted to put her picture in the newspaper with a caption that said "here she is. nothing is wrong with her. she is perfect." It drove me nuts. I had gotten over this, but when people who have never seen Sloane or haven't seen her in a long time says things like I heard today I regress back.
I can not lie when my hubby and I look back at pictures of Sloane as infant, we can not believe how frail and pale she looked. We didn't see it that way while we were traveling on that journey, but now sometimes I don't even want to look at old pictures. I would have to say, that Sloane didn't start to perk up in coloring and size until she was 6 months old. I guess that is why people who havent seen her say things like "wow, she is really thriving." Maybe when they did see her when she was an infant, they saw the reality of the situation.... the unconditional love of a parent doesn't.
Over the past year, Sloane's godmother told me that she was concerned about what was going to happen when Sloane was first in the NICU. Something she never lead on to us while we were hanging on by threads. I also remember the first time my brother and my SIL came to see Sloane in the NICU. They exited the room before I did. I met them in the hallway and my SIL was crying and my brother looked like he wanted to throw up. I knew why. I knew what they saw. I knew what they felt. I knew what they didnt want to think. I sternly told my SIL "no crying" and kept walking. There were the days when I had pictures of Sloane turned black/white or sepia by my dear friend's father so you couldn't tell how drawn she looked.
Was Sloane sick? No, but she was a newborn with pneumonia. She had a nasal gastric feeding tube, O2 in her nose, IVs in her arms, heart monitors on her chest and was on a strong doses of antibiotics daily. She wore a hospital gown most days because fussing with all the tubes through arm and leg holes wasnt worth it. As if that was enough of an upsetting sight, add the days of invasive medical procedures, testing, and surgeries to it.....and Sloane did start to look sick. She looked drawn, frail, and under-stimulated for almost 50 days. Sure there were regular normal new-borns days missed in, but who remembers those???
Given those memories, I shouldn't be surprised that old friends today were pleasantly surprised to see Sloane looking perfectly healthy, incredibly animated, overly friendly, and downright energizer bunny like today.
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