So what could be overwhelming about raising Gesina lately? Glad you asked as we have had a laughably horrific few weeks. Since I last left you, Gesina had a stomach bug... well that little bugger never really went away. After 10 days of her off-and-on refusing bottles, vomiting nearly everything she ate, not producing stinky or sometimes wet diapers, and generally being unhappy, I called her GI nurse for the second time and she had me take Gesina to the ER in the Children's hospital 45 minutes away from home. After 3 hours in the car (I work an hour away from home in the opposite direction of the ER), we arrived to a packed ER at 6pm on a Tuesday. It's about 75 people deep and everyone thinks their kid has that dreaded flu that is going around. I didn't have time to stop at home so there I am at the ER with a hungry baby with no diapers, no food, and no 9pm meds. By about 8:30 I ask the nurse if it's going to be much longer because I have no meds and live 45 minutes away. She is great and orders a dose of the meds for me and gives me some applesauce to feed my little Gesina monster. I give Gesina her meds and she promptly throws them up all over me as the nurse calls our name. For the first time ever, I get mean mugged for having a crying baby... at the children's hospital... BY THE WOMAN NEXT TO ME WHO TALKED ABOUT JESUS FOR THE LAST HOUR!!! I couldn't believe it. The hospital ordered more meds and Gesina got an IV drip for mild dehydration. We got home at 3am and we were both exhausted.
Wednesday we wake up and Gesina cries a horrific cry I never heard before. I'm terrified and find out it is her "pain cry". I give her a suppository and tylenol but that doesn't really help. I call the pediatrician who thinks its cramps from dehydration but if it gets worse or doesn't get better, take her to the ER. At 9pm Gesina wakes up screaming her pain cry (which really is horrible and just makes me cry) so I give her her meds, then off to the ER we go. Day two of the ER is even more entertaining as there was a car accident involving teenagers. At first, I'm saddened by the thought but then I sit in the waiting room and realize that I have chosen my seat in error. The family behind me has a very lively dad that is dropping an f-bomb for every other word. So I'm trying to feed Gesina and though she can't understand his language, I can imagine she can feel his anger as he is yelling "How's she supposed to know the car was stolen? She wasn't driving..." with some f-bombs thrown in for artistic value. I'm stuck because if I move (he's sitting right behind me) then I look like I'm making some statement and he's very aggressive right now. So I decide that it's 10pm on a Wednesday night at the children's hospital ER, I'm low on sleep so this is just my form of entertainment. Gesina gets an x-ray characterized as "impressive" by the ER nurse due to the "extreme" gas and poo in her system but no blockage. A suppository and tylenol later, I leave the ER at 6am with a screaming baby and a key for a hotel room because Gesina has an appointment that afternoon for a swallow study at the same hospital.
I'm exhausted but we get through it all. The swallow study shows that yup, now that we've lowered her oatmeal intake per ounce of formula (as demanded by the nutritionist), she may be aspirating but we can't tell conclusively. So days in the hospital and a swallow study later, I've learned that there is nothing they can do that I haven't already been doing. That's over $500 to affirm what I already new. Oh, and Gesina is still struggling off-and-on with the stomach bug and we are going on a month of it now.
Last week we had the all clear from her cardiology appointment (yay), the NICU developmental clinic (where they agreed that a g-tube for Gesina is in her best interests), and a neurology appointment. Gesina has had a few odd instances where she startles and then her eyes roll in a circle. These had happened in clusters of about 3 to 5 at a time. Her neurologist and I hope these are just benign reflexes but decided to do a 72-hour video EEG to rule out infantile spasms (do not Google if you can't handle it, these are bad). We are currently on day 2 of the EEG and it's picture day at daycare! Yup, I have the worst luck in the world. So we decided to go with it and make her electrodes just a Halloween costume. When she grows up and see's these pictures, I'm going to tell her I just decided to dress her up as Rob Zombie or George Clinton for Halloween. Fingers crossed that she just thinks her mom has weird taste in music! Here she is in all her scary glory... grrr!
She's rocking that look if I do say so myself. In the meantime, through all the stomach bug, Gesina has gained the expected amount of weight (wtf). I'm going to get the g-tube but I may still fire my GI. He keeps telling me she doesn't have acid reflux because she's on a good dose of Prilosec. I asked about changing brands and he says they are all the same. I asked about the vomiting a bottle everyday and he says that's to be expected. I asked about her slow digestion, he says she's fine. I can't work with him long term so I have to decide if I want to change GI docs before the g-tube insertion or after.
Next up, pediatrician on Friday where I get to explain to her that Gesina's brain atrophy is not a degenerative disease but the result of a one-time brain injury (per neurologist). Hopefully she will help me navigate the GI doctor issue instead of serving a big slice of the truth pie... as she sees it. Then, the g-tube which is an overnight stay. Not gonna lie, putting a whole in my babies stomach when she's gaining weight, getting taller, and seemingly healthy is not going to be easy. BUT, I recognize that she takes in only 3 ounces a day at daycare so they can't feed her and I barely can so I'll do it... hating every minute of it... because that's extreme parenting for ya ;-)
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