Monday, April 23, 2018

Bottles & Buckets


Lola  ~  April 22, 2018


Last night as I was feeding Lola her bottle, I remembered something important I wanted to share with all of you. Let me back up for a minute...

When Claire was born almost 17 years ago, she struggled with her feedings. I was bound and determined to breastfeed her. I wanted every single additional IQ point I could maybe provide for her & also longed to connect with her any way possible. So, every single feeding every 2-3 hours involved me breastfeeding her first which was a struggle for her and me (Let's not even discuss her tonic bite... suffice it to say our nursing relationship ended when blood was drawn! <gasp!>), then I would use the breast pump for 5-10 minutes to be sure I had extra milk for her and to keep my supply up, and lastly, I would feed her another ounce or two via a bottle to be sure she got enough. I would then sit her up, burp her, and watch her reflux the contents of her stomach into the bowl I kept next to the couch for just this very thing. I would pour what she vomited back into the bottle to see how much she lost, and it was usually 3/4+ of the total amount I fed her. No matter what I tried, this happened every feeding, maybe 8-10 times a day. It was brutal and frustrating and draining for both of us. She could not be laid flat EVER, due to her severe reflux. The medicine her doctor prescribed for us to help with her reflux actually made her vomit even more, if that was even possible. I don't know how she continued to gain weight amidst all this chaos, but she did. 

It wasn’t until Claire started solid foods (organic, raw, fresh bananas and avocados) around 9-12 months of age that the reflux finally stopped. I found myself resorting to solids more than liquids because she was able to tolerate those so much better. She was unable to use food thickeners for her liquids because they contained her food allergens. I knew she needed more liquids, so I would add an ounce or so of her formula to her mashed avocados & bananas. I also was able to add butter and ghee to her feedings to increase her caloric intake. Her bi-weekly weight checks showed unbelievably slow but steady gains. It wasn’t until Claire contracted Rotavirus at age 3 that we realized how important her hydration was. The illness involved nearly constant diarrhea and vomiting over the course of several days. This led to severe dehydration and almost her death. Chronic dehydration is no joke. We had a g-tube placed a month later when her body was stronger, and we’ve never looked back since. Claire is probably the healthiest member of our family. She never enjoyed eating, and the g-tube, while it seems invasive and scary, honestly isn’t that big of a deal. We promised her we would never again let her get dehydrated. She is rarely ill, and her diet is immaculate (full of fresh, organic fruits, vegetables & greens) because she doesn’t have to taste it. HA! Total win-win. Best decision we ever made was getting Claire a g-tube, and 13 years later, I have zero regrets about doing so. It saved her life.

Fast forward to a few months before Lola’s birth when we found out she too had the same condition as her sister — While we knew the g-tube was a lifesaver for Claire, I did sort of feel like we lost one of the last “normal” parts of parenthood the day she got her feeding tube. I remember praying for two things those last few months of Lola’s pregnancy: 
  1. I prayed she would survive the birth process.
  2. I prayed she would be able to nurse and eat “normally” and that it would bring her joy.
Guys, Lola turns TWELVE in 5 days. 12!!!!! I am proud to say our prayers were answered. She is *still* able to drink from a bottle, she eats baby food off of a spoon like a champ, and she flat-out LOVES TO EAT still.

What hit me today is how absolutely miraculous this is. I will never forget all the people who told me right after Claire was born that she would likely lose the ability to eat & that it was pretty unrealistic to think that she would be able to continue to nurse/drink from a bottle/eat off a spoon for very much longer. I remember them telling me how it wasn’t that abnormal for her to be able to eat orally before age 1, maybe even age 2. They told me that somewhere between age 1-2, the suck-swallow reflex turns into a “learned behavior” and that a huge majority of kids who have brain abnormalities simply cannot learn how to coordinate this any longer. Many will begin to aspirate at some point. They will not be able to swallow effectively anymore, and the fluid that is accidentally aspirated into their lungs will make them sick with pneumonia. They all swore we would be in and out of the hospital frequently with aspiration pneumonia, and this would cause lung damage and scar tissue. At some point, their little bodies wouldn’t be able to fight this anymore. They all urged me to schedule a g-tube placement for her ASAP. They told me the warning signs to watch for. They worried about her small size and fragility. No one thought Claire would live to age 1.

After having Lola, these words echoed in my head once again. I remember being terrified once she turned 1 that I would soon see the decline occur. I watched her like a hawk during feedings. She was even tinier than her big sister, and she seemed to get sicker more often than Claire also. She too fought horrific projectile reflux (And it might have been more intense than Claire's ever was -- One incident, she actually projectile vomited a distance of 15 feet, which if you do the math on that, considering she was approximately 18" tall at the time, this would be like a 6' tall person vomiting a distance of 60 FEET! That shit was POWERFUL, yo!), though it was easier to replenish because she ate so well & had such a good appetite. To this day, I feel like much of our days are spent feeding and preparing fresh blended foods for the girls. (SO GRATEFUL for Scott, our babysitters & nurses for stepping up & helping share this responsibility with me now -- Don't know what I'd do without you guys!!!) I have always wanted to give them what they needed. I was determined to optimize their lives and “save them” from their grim prognoses. I wanted them to reach their full potentials no matter what. I still have no idea if anything we do has given them the opportunity to defy odds as they have or if it would have happened regardless. Honestly, it just makes me feel proactive & at this point, I'm scared shitless to stop doing what we're doing, as SOMETHING is clearly working.

I guess my message to all the parents of children with special needs is this:

No one freakin’ knows what the future holds. NO ONE! Not the leading expert in the field, not your pastor, not your Mama, not the parent who has a child JUST LIKE YOURS. Anything — and I mean ANYTHING! — is possible with these kiddos of ours. Be willing to think outside the box. Listen to your Mommy instincts. Question everything. Do your research. Ask other veteran moms for tips. Seek alternative solutions. Have a support network to lean on for additional help. Don’t give up on what you hoped for before the diagnosis. Never lose hope. Stay positive always, even if you have to "fake it till you make it."  I repeat, NEVER. LOSE. HOPE!

None of this was supposed to happen. Claire & Lola were never supposed to be able to eat orally for years on end or survive past age 1 or progress developmentally or even have vision. They were supposed to be in the hospital frequently and ill often. Don’t get me wrong, we have struggles beyond what anyone can fathom, but they are struggles we are coping with and still learning from. Never doubt for a moment that your child isn’t strong AF because look at how hard they fight daily to be here and function. They are fucking warriors and superheroes and badass odds-defiers, every last one of them.


SO appreciate all who came before me carrying buckets... You guys saved ME.

xo

2 comments:

Unknown said...

I am so glad to hear from you - and to celebrate the abilities of the girls to defy the predictions of experts!

jwm78 said...

Happy to see you blogging again! I look forward to more posts - you and your family are truly an inspiration!

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