Home 22q11.2 July 21st, 2021

July 21st, 2021

by Summerly Rowlands

Wednesday, 7/21

Sometimes I wonder why I share anything positive because it seems like those glimmers of hope just get ripped away from us so quickly… like we can start to see the light at the end of the tunnel, and then *BAM!* it’s pitch black again.

Things started fine. Izzy did really well throughout the night even when the nurse and I had a miscommunication and we both fed her without knowing the other person did. She had a reflux incident from that in the morning, but then she was okay.

The hospitalist team & GI made their rounds as they typically do, and they told us today would just be monitoring and observing. They were even going to increase the amount of formula through her tube in conjunction with decreasing the amount of electrolytes and nutrition fluid through her PICC.

Speech then came around 10:30 to watch Izzy feed, but since she’s still having breathing concerns, they’re hesitant on continuing bottles. The speech therapists keep talking about the bottles being the issue, but for the hundredth time, they are NOT. Just as we’ve told them from the very start, taking the bottle isn’t the problem, it never has been. “The girl LOVES to eat!” we have said on repeat. It’s the reaction after that is concerning. As she feeds, we can see from the haunting monitor that she dips in oxygen, and then her reflux kicks in anywhere from 5 seconds to 2 hours later. The same thing has happened with her feeding tube… hello!? This isn’t a bottle issue. And clearly it’s not an esophagus or anatomy issue, evidenced by her perfect swallow study & upper GI… so could it be the type of formula?! We’ve been asking for someone to answer this for over a week now. Or could it just be that she’s had a major set back in her short time here on earth & she’s having to re-learn, twice in 20 days of life, how to function properly?! Or maybe she’s just little and the amount you’re trying to force in her is too much because she’s not this textbook baby that you want her to be… Hell, maybe having a tube up your nose & down your throat could hinder your eating abilities… But what do I know… I’m just her mother.

Let the trial and error of feeding continue…

Still nothing from immunology. Apparently we won’t hear from them until genetic results come back. Not sure why.

Added specialists today: dietician and dermatologist. Dietician we’ve been asking for since the 13th… dermatology because she now has an awful case of baby acne covering her entire face in lumps & puss.

Speaking of rashes & people not listening to us… Izzy actually tore an anal fissure in her skin from pushing so hard trying to poop. Remember when her dad & I brought up the constipation concerns (also on the 13th) & she had to wait and wait for any type of relief… well the straining is back & plastic surgery had to come take a look. “SHE BLEW A SECOND BUTTHOLE?!” I yelled sarcastically… this should not be an issue we’re dealing with right now. Thankfully it should heal up on its own.

New ointment meds: fungal cream for her super sore face & special pharmacy-made diaper rash cream for her super sore bottom 😭

Tonight we continue praying for negative DiGeorge results, along with figuring out this whole breathing ordeal so that we can take our baby home (& preferably without a feeding tube…).

We found out we will be here until at least this weekend… but it feels like it’ll be even longer.

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