Yesterday you turned 28 weeks, and even though the calendar says you're not 7 months for another couple weeks, I'm saying you've been with us now for 7 whole months. I've been waiting to write this first letter most of that time because I wanted it to be a letter full of nothing but joy. But I'm realizing I can't write that letter until I get this letter out of the way. I have to tell you how hard it's been first--for us, for Alice, but mostly I imagine, for you.
Things with you went South pretty much immediately (if we're being honest, they've been hard since you were about 8 weeks in utero). You failed your hearing screening in the hospital (but passed a month later). You have severe reflux and gastrointestinal problems, including possible micro aspirations and bleeding intestines. You have struggled desperately with latch from the beginning. We have had your tongue tie clipped, taken you to THREE different physical therapists, done mouth exercises at home, seen a chiropractor, a naturepath, two different pediatricians, an allergist, and a gastroenterologist. You've had over 35 physical therapy appointments, 15 visits to the doctor's office, 12 visits to the lactation nurses, and one visit to the ER. This means that in just 196 days of being alive, you've attended over 63 appointments, and that doesn't even include the countless phone and email consultations we've had on top of that. You've tolerated an allergy panel, having blood drawn, multiple rectal exams (to gain stool samples), countless weigh-ins on cold, hard scales, abdominal palpitations, a bout with thrush, a nasty head cold right in the middle of sleep training, and a constant barrage of medicines. In an effort to make the breast milk easier to digest, I've done a total elimination diet that consists of turkey, rice, potatoes, millet, and pears. Over time I've added back in avocado, bananas, oatmeal, and chicken. To say I'm starving is not just a turn of phrase, but a literal truth, as my clothes grow larger by the day. For three months you could only latch on one side so I pumped the other side for you. Your stomach was so angry all the time that we never put you down. You woke up to eat every 30-45 minutes for five and a half straight months. The only way you could get any sleep was if you were held almost straight up and down. Your dada spent the winter walking the dark and snowy/rainy streets with you at 3 in the morning while you wailed miserably. And while this has been unimaginably hard for us, I can't help but think it's been a million times worse for you.
We've aggressively pursued every possible course of treatment we could for you, both traditional and voodoo. I've had many people, including medical professionals, tell me to just give up breastfeeding, which I've refused to do. ….Until this afternoon, when I was advised that it's medically necessary (practically mandatory) for your survival. There is literally nothing left to try, and in the past month you have only gained an average of 1.6 grams per day when you should be gaining between 10-15 grams per day. Additionally, if we continue down this path, we run the risk of creating lifelong food allergies, rather than just the sensitivities that you should be able to outgrow. This was devastating news, not only because I've fought so hard for breastfeeding, but also because you are still suffering so much.
A while back, a very dear friend jokingly called me a witch when referencing my power to influence her cycles whenever I'm around her. It made me laugh, and I've started to think of you as my tiny witch, with your fiery disposition and Earth-shattering howls. As your physical therapist so aptly put it, you experience ALL emotions with a greater intensity than the rest of us (this is one reason I love her).
I summarize all this not to complain, but to illustrate how hard it's been for you. We came home from that appointment today with a plan to finally get you on the right track. To the detriment of your health, I nursed you one last time and these were the things I thought about as we sat there together. You were so tired and fell asleep on the breast so I just held you and watched your sweet face, your tiny fingers resting on my chest. My heart breaks that we are losing this moment far too soon. It breaks more that you are suffering. Your doctor has suggested we try this for two weeks and then try breast milk again to see how you react so we could potentially return to breastfeeding. But we both know in our hearts that this is the answer for you and that this was the last time.
And that's maybe why I can't write the letter of joy first. Because even though there has been joy, it's also been the single most challenging period of my life on all possible levels. I grieve for you and your health problems. I grieve for us as a family and the stress this has put on us as a unit. I grieve for Alice and what I thought was going to be a difficult adjustment to a new sibling, has been so much more as both her parents try desperately to balance an impossible situation. I grieve for myself, and having to give up control over the way I'd prefer to do things with you. The single most fundamental human relationship--a mother nursing her child--is causing you harm and I feel powerless to help you.
And yet... despite this PROFOUND grief...if I look deep within myself it's abundantly clear that I'm not remotely powerless. We've done this together, you and I. To call this a struggle is to call a tiger a kitten. And even though my brain keeps skipping back to, “but what if we tried X instead,” my heart knows the way forward, even as it grieves. Because one thing is clear, when you don't feel like total crap, you are joy incarnate. You are starlight and pure golden sunlight wrapped all in one. Who wouldn't want more of that? So, we will keep doing the worst things in pursuit of starlight. We will cry together, for different reasons. And hopefully you will start to get better, and we will both have fewer tears. And you will still know, my sweet, most treasured, Tiny Witch, in every cell of your body, even without breastfeeding, that my love for you runs from a place so deep, so profound, and so fierce even I can't fathom. You will know. And we will have light.
After a SINGLE day on formula, you are an entirely different human. There were mercifully no more battles over the bottle today and you were consistently in a good mood nearly the entire day. It is clear that you already felt better. We are ALL holding our breath that this is just the beginning of better times to come.