Adventures in Extreme Parenting

I've decided to "repackage" special needs parenting. When times are tough and juggling the expectations and needs placed on me becomes overwhelming, I find myself feeling a little like a victim. That mentality spreads and leads to a sense of desperation and sadness. Also, I find that in general, society doesn't really value parenting, especially special needs parenting. On an average day, I don't need looks of pity when I'm with my daughter. She's beautiful and perfect. If I'm lucky, she'll grow up to be happy and really that's all anyone should wish for for their children. What society does value is "extreme" home makeovers, "extreme" Mountain Dew, "extreme" sports, or any other extreme thing that gets you a sponsor and TV-time. The label "extreme" means that you are tougher than the regular Joe and that you got this... whatever it is. To boost my spirits when I get overwhelmed, I've decided that as a special needs mom, I'm engaged in extreme parenting... that's me, I got this and I'm a bad ass :-D It really does change your mentality as extreme athletes aren't victims, they snack on danger and dine on death! So when I see friends starting a food train because their healthy and fully functioning child has a planters wort, I don't get mad. I laugh, but then, I remember that not everyone can handle extreme parenting ;-) Sorry to offend those who don't get the life altering experience of extreme parenting, but let's face it, you have plenty of other benefits!

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 ;-)

39 weeks and 1 day old

My little Gesina monster is 9 months old :-) In fact, she is 39 weeks and 1 day old and having been born at 39 weeks, she has officially been on the "outside" 1 day longer than the time she spent on the "inside" :-D Here she is in all her glory with a smile just for being placed in her activity gym...

The last week has been challenging though. We saw the GI doctor on Thursday and even though Gesina had gained the amount of weight they wanted (and went from 12 percentile to 15th percentile) all the doctor would talk about is the G-tube. He is not interested in her acid reflux issues or managing her meds for that, he is just all for the G-tube. We are going to schedule a swallow study as the thinner liquid seems to make her sound congested after a bottle and we need to find out if she is aspirating. After that, we plan to re-evaluate what we need to do next. Needless to say, I left the appointment frustrated and determined to get a new GI doctor. And then... the stomach virus hit :-(

Grandma and grandpa came to visit and got to enjoy the start of the stomach virus. Starting Saturday Gesina started throwing up 5 or more times a day. I was soaked in it and my floors have never been cleaner due to the constant wiping up of vomit. In fact, I've gone through so many t-shirts that today I'm wearing my last clean t-shirt, my free Chicago Cubs shirt... and was accused of being a Cubs fan. Never! I don't support loveable losers as a general rule. I brought her into the pediatrician's office on Tuesday and have spent the last 4 days feeding her 10 mL of formula every 10 minutes and I'm so exhausted. Between Thursday and Tuesday she had lost half a pound even with my best efforts to keep feeding her the appropriate amount of formula. By now I've completely thrown out the playbook and her ideal amounts of formula per day are forgotten. I'm lucky if she keeps down 6 ounces of formula a day. This morning she kept yogurt down and 3 ounces of formula. We are aiming for feeding her every 2 hours about 3 ounces and we'll see if our luck holds.

So, how does this episode relate to the G-tube? I've talked to her many therapists and even the daycare director who is a speech pathologist this past week. They all said something that really halted my thinking on the G-tube. They all independently said that based on their experience with Gesina and other babies like her, Gesina's development is being impacted by her nutrition and acid reflux. The G-tube can help get those two issues under control so we can focus on her motor development, stretching, etc. This fact crosses a line or standard for me. I refuse to let my daughter's development lag just because her mother is stubborn. I can't will her to eat but I can allow her to be assisted in that endeavor so we can focus on more important things. As Adrian said about this issue, with my original path, I would end up with a teenager who can eat but can't do much else. So I thought long and hard on what my reservations are about the G-tube. I don't care if Gesina is "different" as I've always liked different :-) so what I've concluded is that a G-tube represents dependency and I value independence so much that I will do anything to avoid dependency. Now that I can identify my "logic" I realize how silly it is. My 9 month old is dependent anyway! So what if she is dependent on a G-tube. And if she has to have it for life, which is highly unlikely but you never know, than she can still be independent in caring for her own G-tube. So getting a G-tube doesn't sound so bad anymore and now it's time to think about what it would do for Gesina.

A G-tube will not directly help her acid reflux or vomiting for that matter. It only directly helps her nutrition as whatever amount of nutrition/formula she does not consume during the day I can make up for with the G-tube. Indirectly, the G-tube can help with acid reflux and vomiting. How? With a G-tube I can let her refuse bottles because of acid reflux or vomiting during the day and make up the difference at night. This means less pain and more ability to focus on growing/learning/developing during the day. One thing I know about Gesina is when one thing goes wrong (seizure, acid reflux, vomiting, etc.) her abilities regress. She can quickly revert to her 3 month old self that needs to be held at all times or will scream until you give in. I need her issues that cause her to regress to be managed. I have a neurologist working on controlling her seizures, and if I let him, a GI doctor to work on her tummy issues. Once I get those two factors under control, then I can add a Physiatrist to manage her therapies and likely cerebral palsy.

And there it is... I've finally "said" it. There is a strong likelihood that Gesina has cerebral palsy. I had hoped we would dodge this diagnosis because she doesn't show signs of weakness on one side like most babies with her background. But her high muscle tone hasn't gone away and she likely has a spastic form of cerebral palsy called dystonic quadriparesis. Once I have a Physiatrist on board, I'll be able to truly diagnose her type and the severity of it. The good news is therapy makes a difference in outcomes so I'm on it. The bad news is this is another label I'll have to wrap my head around and embrace. Will she ever be able to run a 5K with me now? We still don't know but worse case? I'll roll her along with me in a wheelchair if I have to! As usual, we're down, but we're not out. She's alive, she's relatively healthy, and she's 9 months old :-)