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In Pursuit of Starlight

4/11/2019

6 Comments

 
Dear Alafair,

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.
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Upset cry face is pretty common around here.
Not one, but THREE medical professionals have told us you are “the most difficult baby” they've ever met in their careers.  The first was a physical therapist who told me she used every trick she's ever learned in 50 years of practice on you, to no avail.  She also said you are the loudest baby she's ever heard. Then your pediatrician told us you were the most challenging baby to treat in her entire career.  And then the lactation nurse said you were the most difficult to feed baby she’s ever met. YES!!!! WE WIN!!! Hearing something like that as a parent is both validating and horrifying at the same time.  I have to admit though, I feel a perverse sense of pride in this somehow, especially the scream volume. I mean, here you are, only 7 months old winning awards and breaking records all over the place! Way to be committed, baby girl.

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. 
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How apropos for this day. I'm just not sure how many more times we can get up.
At the moment, I am literally sick with grief. I am nauseous, my head hurts, and I can't breathe from the sobbing.  It is 4 in the morning and I am lying here wondering how you will know that I love you. I was already forced to take you out of my bed and now I am being forced to cold turkey wean you at the age of 7 months, a solid year before I even planned to think about such things.  So how will you know??

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.
Picture
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You are reacting to the proteins in the milk, which are impossible to completely remove from human milk.  The milk I'm producing also isn't fatty enough--not hard to believe given my diet restrictions. And because you can't seem to just catch a break, this transition is proving to be hard too.  Formula tastes bad apparently, and you do NOT like it. If I thought sitting through our final breastfeeding session was hard, I had no idea how hard it would be to watch you struggle against the bottle after.  And then at bedtime, you anxiously nibbled on my shoulder as you usually do and I had to turn you over for another fight with the bottle and let you go to bed hungry. I can't bear it that I can't explain to you why this is better.  And I can't bear it that all of these “better” things we've had to do feel like the worst things.

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.
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4.12.19
UPDATE
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.
6 Comments
Jenna
4/12/2019 10:09:07 pm

WOW Kate. You are a super Mama and I'm so sorry to hear that this time has been so incredibly hard. I thought that the first 7 months with a totally healthy baby was brutal and this is another level. I hope that your beautiful starlight baby is better on formula and that your family can start a new chapter. This is so beautifully written and I am sending you lots of love and healing thoughts. I hope that you will be able to look back on this in a year, with everyone in good health, and say, "wow, look at where we are today." <3

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Keara link
4/13/2019 07:10:55 am

When I met you, I was attracted to you because you were a tough, hammer wielding, witty, intelligent, adventurous and super caring human being. There are so many amazing things that make up you. Becoming a mama has emphasized all those things. You are amazing. Your daughters have clearly inherited all those traits from you. (I’ve seen pics of Alice with tools so I know this!). This is harder than most people will ever even realize. Thank you for writing this. Much love. And peace.

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Kristy
4/13/2019 07:43:20 am

Thank you, sweet fried for writing this! Such a trying time and look how you've come out shining like gold. You may not see it, but we do and Alafair sure does. I'm byond happy that she is (so far) doing better! That's the one thing that makes difficult (like agaist all mothering nature bult within you) decisions feel better... knowing it helps. A thousand hugs to you and your family!

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Kate Madson
4/13/2019 08:16:53 am

I am sitting at my kitchen table, slippers on my feet, leftover coffee forgotten in my hand with tears running down my face. I applaud you mama. You are so strong. I do not believe I have read a single one of your blogs that hasn't left me weeping... and amazed all over again at the depth of a mother's spirit and the solid steel hidden behind the softest hearts.
--your steel, Kate, your heart--
Thank you for sharing this with me.
<3

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Anne Wagner
4/14/2019 08:38:27 am

Ah, Kate, your friends have said so much well that I might only "ditto" their loving comments, say again that you write beautifully, and thank you for sharing this profound journey. With love to you & all

Reply
Tia
4/26/2019 09:46:34 am

What a journey...I can't describe how excited and grateful I am be in your lives and witness this all this growth and change. Thank you for sharing your rollercoaster and opening up with us. Super woman! :)

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