At long last, the nightmare our family has been going through is over.

You’ve probably noticed that we haven’t been blogging at all lately, and might be wondering why.  Or if you know us more personally, you are privy to more of the story– that our sweet baby boy Wilson has been going through a lot, dropping from 90th percentile in weight at one month to 55th percentile at two months, then 27th at two and a half months, then 20th at three months.  He was hospitalized for three days because we were worried about these weird fits he was having during his sleep, and thankfully we determined them not to be seizures.  He totally stopped breastfeeding out of frustration and he stopped taking a bottle.  He couldn’t breathe through his nose while he sucked.  We spent hours every day in the shower because the humidity seemed to help him breathe.  He cued that he was hungry all the time.  He either had diarrhea or constipation– never anything in between.  He had bad sleep apnea, he snored so loudly we couldn’t really sleep though it, and he wouldn’t nap unless held.  At night he would sleep from ~7-10 pm and then was up every 40-45 minutes the rest of the night.  He screamed 95% of the time he was in a car seat.  He was exhausted and hungry, and his stomach hurt.  And we were exhausted and frustrated, and our hearts hurt.

To say I was overwhelmed would be an understatement.  I had at least three, usually four appointments for him every week from early February until last week, which was mid-May.  Every appointment was usually thirty minutes away from our house, which meant around sixty minutes of him screaming with me unable to hold or help him.  And I had Evie to take care of as well.  She loves her baby brother more than anything in the world, and has truly been our inspiration to keep going when it’s just seemed like too much.  Even though she has the patience and empathy of Mother Theresa, which is saying a lot for a 2.5 year old, she couldn’t just be ignored while we were going through all of this, and she really needed extra love and reassurance.  She learned how to say “Mama, I’ve been missing you a lot today, and I really need you right now” while climbing into my lap for a cuddle.  She never once got frustrated with Wilson and hit or bit him, despite our obvious imbalance of attention.  She’s the most amazing 2.5 year old I’ve ever heard of.

Wilson’s pediatrician told me to stop giving him breastmilk because she was convinced it was the reason his stomach was hurting him so much.  I stopped pumping and filling our freezer with milk I thought we’d never be able to give him, and it all just hurt so much.  I’m a huge believer in the power of breastmilk and it was really painful not to give it to him, especially while he was struggling, and it was even more painful believing that my breastmilk was a likely source of his struggles.  We saw specialist after specialist after specialist in Charlottesville… and while we are so blessed to have amazingly talented pediatric specialists in this small town, not one of them knew what was going on, though they all agreed something was wrong.  I found the only way I could get any sustenance in him was if I woke up right as he was just waking every 40-45 minutes at night, meaning I couldn’t sleep or else I would miss that 15-or-so-second window.  And at the threat of another hospitalization and Failure to Thrive, it wasn’t worth the sleep.  Doctors, speech language pathologists, and lactation consultants all used words like “mysterious” and “unusual,” accompanied with “perplexing” and “unclear.”  Everyone told me to just “keep doing what we’re doing” and spend the daytime in the shower so he could breathe, and the nighttime waking up with him every 40-45 minutes to get another half ounce in his body.

Our Charlottesville community rallied around us.  Friends set up a meal train, and we had friends, colleagues, neighbors, and church members bring us meals (and sometimes wine!!), take care of Evie, do chores around the house, run errands for us, and most importantly, just be available and supportive.   One local infant physical therapist in particular saw us multiple times per week gratis because she understood the hell we were going through.

I’ll spare you the details, but last week we got Wilson’s posterior tongue tie revised by an ear, nose and throat doctor outside of Charlottesville, and about 90% of his symptoms suddenly vanished.

It’s a miracle.  I spent the first few days after his frenectomy, as the procedure is called, crying out of disbelief.  He started sleeping with his mouth closed for the first time.  He doesn’t have to be held for naps, and last night he slept from 7-2:30 straight, which is truly remarkable for a baby who’s learned to wake up every 45 minutes and get rewarded with something to drink.  He is able to take a bottle efficiently– no clicking noises, no air getting in, and no liquid spilling out of the corners of his mouth.  He isn’t swallowing bucketloads of air.  He isn’t screaming in the car seat.  He is able to take the recommended ~30 ounces a day now… sometimes he even takes in more.

He smiles all the time, he giggles, and he’s content to watch and learn and explore as a normal 5 month old baby should.

It seems almost too good to be true.  And according to literally dozens of doctors to include pediatric oral surgeons, 3 pediatric ear nose and throat specialists, pediatric GI specialists, pediatric sleep specialists, pediatric developmental specialists, speech language pathologists, and some lactation consultants, it is too good to be true.  Apparently there is no such thing as a posterior tongue tie according to “the experts.”

We were told on multiple occasions that 1) he didn’t have a posterior tongue tie, 2) he may have a slight anterior tongue tie, which is far more common and discernible, but it was so mild it wouldn’t possibly be causing any of his symptoms, 3) there was no such thing as a posterior tongue tie, and 4) even if there were such a thing, if we had his tongue cut, his tongue would probably become so loose it would fall back into the back of his throat and obstruct his airway and it would be irreversible.   Yet not one of these people could tell us why Wilson’s tongue was unable to move up, or explain any of Wilson’s symptoms for that matter.

On the other hand, we also saw some lactation consultants and dentists who told us he had a severe posterior tongue tie and that the reason he was struggling was his tongue could not lift upwards.  It was an agonizing decision but we finally decided to get an opinion by a medical doctor outside of Charlottesville’s system.  And when that doctor said Wilson had the second-worst category of posterior tongue tie she’s seen, and that she revises the tongues of ~10 babies a week, we decided to trust her.

Thank goodness she was right, and “the experts” turned out to be wrong.

To our village in Charlottesville who supported us so much for the past few months, thank you.  To my group of mom friends– my tribe– I couldn’t have made it through this period without your friendship.  To the talented physical therapist who devoted literally over 100 hours to working on Wilson when you could have been seeing paying clients instead, we’ll never be able to thank you enough.  To my office, which has been so understanding and flexible about my needing to postpone my return back to work, I am so grateful. To our friends and family from outside of Charlottesville who called, texted, checked up on us, sent care packages and cards, and let us know we had a wide net of support, thank you.  You know who you are.  🙂  You are amazing, and David and I appreciate you more than you could ever know.

If there’s one reason God put us on this roller coaster of a journey with Wilson, it was to show us how amazingly loved and supported we are by so many wonderful people.  Thank you all so, so, so much.  I never knew how blessed we were really were until this all happened to have each of you in our lives.

To the countless doctors who misdiagnosed/ missed Wilson’s posterior tongue tie, I forgive you.  There is a whole website dedicated to educating doctors about tongue ties: http://www.tongue-tie-education.com/write-a-letter.html and I know that Wilson is not the first baby to have gone through this.  I just ask that you take the time to educate yourselves so that Wilson is the last baby to go through this.

The road isn’t quite over yet, though.  For one thing, we still have pediatric allergists to visit and a sleep study to complete, and I’m in the process of relactating so that I can give Wilson breastmilk again.  And our family needs to heal.  We’ve all been in survival mode for months.  I haven’t slept for more than 40 minute increments in months.  I have been told by one healthcare professional that my anxiety level is equivalent to patients whose cars were hit by 18-wheelers.  Our house hasn’t been tended to basically at all, and we haven’t even tended to each other the way we should.  So for the next few months, David, Evie, Wilson and I are going to just try to be grateful for the gift of each other, and maybe try to do a few things like pull up some of the big weeds that have overtaken the garden.  Or maybe not.  🙂  And that’s okay.