Survive

Drafted yesterday

I’m not sure how I’m supposed to do this.

Left arm hurts.
Chest hurts.
Back hurts.
Belly hurts.
Pulses weak.
Breathing shallow.
Trying to breathe deep.
So tired.

Drinking soup. Drinking juice. Drinking protein milk. Eating what can. Sleeping when can. So tired.

Love joe so much. Helping what can. Doing what can. Cooking, playing, singing, driving, carrying, cleaning, loving.

Love Adahlia so much. Still drinking milk. Sleeps close. Wakes laughing.

Babbling. Dancing. Side-stepping. Climbing. Crawling under legs. Looking at picture books. Looking up at me.

Trust.

Hundred-yard stare. Slumped in her chair. So tired of being tired. Doesn’t want to play.

Heartbreak.

Amino acids

… Building blocks of proteins, and therefore, our bodies.

One child with DBA found a cure through leucine (an amino acid) supplementation.

Earlier today, breastfeeding her, it struck me again how much we’ve struggled with keeping Adahlia breastfed. We’ve entered another final stretch before transfusion- it is clear she is very low in blood. She looks like a beautiful little vampire child, she is very easily upset, she’s a bit wobbler than normal on her feet, the last two nights shes awoken fitfully several times, much more frequently than normal, and just this morning I noted a remarkable decline in her desire and energy to breastfeed. After trying for a bit, she gives up, and frustrated and squirming, angrily tries to get out of my arms. At this point, knowing she hasn’t eaten enough, I hold her close to my heart til she settles and begins naturally to root around again with her mouth. This morning, we had to repeat this dance eight or nine times. It took over a hour, maybe two, to feed her what I’m gueestimating would be a single 15-20 minute normal feeding session, and I’m still not sure she really drank enough.

The time between naps is shortening; the length of each nap stretches.

I also just got her lab values in from last week: her neutrophils had gone down to below normal, as well as her red cells, which means that everything basically plummeted this past month. Even more discouraging, her reticulocyte count was only 7. (Normal is 10-90ish). Since November, she has almost always at least had a retic count in the low-normal range… I think last month it was 24. (Now, given her anemia, her retic count should actually be above normal, in the 100s, as her body should be getting itself back on track, making a bunch of her own RBCs as the transfused cells die. For whatever reason, that simply isn’t happening. So in her case, normal actually isn’t good enough. Below normal? Well…)

Sigh.

Anyway, amino acids. It’s occurred to me, that since cutting back my protein a bit due to my kidney issues, I haven’t really been careful to keep my protein intake up high enough, which is especially important since I’m breastfeeding. Its tricky because the appetite just isnt the same when the kidneys are struggling. Getting adequate nutrition has become a delicate balance. And, its occurred to me, it may be a balance I may not be doing very well, given that my heart is now having trouble too.

Since whey is so easily digestible, I’ve started doing whey supplementation. A couple scoops in milk, and it has the added bonus of being high in amino acids, of note, leucine, which might help Adahlia. So I drink a serving or two a day, which gives me 20-40 grams of protein. That, combined with more or less normal meals, should give us what we need.

I am also drinking Hawthorne berry tea, which is good for the heart, and taking fish oils again. We’ve added a couple herbs to my Chinese formula, too, to help stabilize and ground the heart. I think its working. I’m not really taking prenatal vitamins regularly anymore, which I possibly should, since I’m breastfeeding, because, well, I feel like I take so darn much already.

Adahlia took her Chinese herbs today, this evening, for the first time since the last post (sat afternoon). That’s not the sort of regularity necessary for healing with herbs, so I will see if maybe I can find ways to get her to be more willing. (Earlier I tried masking the herbs in puréed pear-blueberry-purplecarrot, but she saw through my subterfuge and waved away further offerings with a sweep of her hand.)

Today I walked with her to the park. It was gorgeous, sunny, with trees in bloom all around us. She puts her fist in her mouth and moves it back and forth to make higher and lower pitch babbling sounds. If I do it, she’ll echo me. We also screech at each other, like birds. 🙂 Its phenomenally wonderful.

She can climb up the full set of stairs now, and likes to practice walking by holding onto whatever’s nearby. She enjoys pulling herself up on my leg. Today, she actually stepped up onto the bottom drawer of the dishwasher and pulled herself up, holding onto the top rack. I swear, she’s a little mountain goat.

She likes to feed herself her baby food purée now… Making a big mess that then I carry her to the bathtub to remove. Sitting in the water in front of me, half in and half out of my lap, she reaches up to the faucet to let the water cascade off her fingers and palm. She leans backwards onto my chest and tilts her head back to look up at me with big eyes and a smile as I rinse her head and hair. I wrap her in a terry cloth towel and cover her in coconut oil before putting on her cloth diaper. I lie down with her and pull out her favorite book, “llama llama red pajama” — earning big smiles, chirps, and excited kicks.

You just never know with her. I’m guessing her Hb must be around 8, but this evening, when we got back from the park, she was full of energy. Her cheeks and lips even had a little color in them. And I breastfed her, and she drank fully and well, without problem. I marveled at that moment, at how lucky I am to still be breastfeeding her. To still have that relationship; to be able to give her that health benefit. It means the world to me. It is worth all the late nights and pumping it took to get us to this point, to have these moments of sweet connection.

When she drinks now, usually, like this evening, she relaxes. She kicks her leg around a little or plays absently with her tors or lays splayed out like a comfortable cat. It is enjoyable.

It didn’t use to be this way. She used to be tense the entire time, struggling as though fighting something. It was so stressful for both of us. And heartbreaking, for me, because i knew breastfeeding wasn’t supposed to be that hard for her. Really, she’s come so far emotionally– she is a vastly more relaxed, happy baby. When I think of how far she’s come in the past several months, slowly but surely unwinding, I know she must be healing.

For example, she used to never let me clean her armpits. She clenched and kept her arms close to her sides, as though protecting herself (Heart 1, a very important acu-point, is located in the center of the armpit.). Now, she lets me lift her arms and clean her armpits. I know it might sound silly amd not like a big deal, but it is. There are countless little improvements I’ve observed like that, things that let me know she is healing.

Tonight, I hope she sleeps well. I can hear her soft breathing; her right hand rests lightly against my arm, a buoy reassuring herself of her connection to my presence.

Do not be afraid little one. I am not giving up on you. And I will not leave you.

The Power of a single…

Point:

My heart has been pounding, my chest squeezing all morning. I self-needled PC6 on my left arm, just belowdecks wrist. Instantly the pressure evaporated, pain gone. After resting a couple minutes, I removed the single needle and my chest feels much more open, my heart more relaxed.

Herb:

I just got back from the herbal dispensary with Adahlia’s adjusted formula – I reduced the Qing Dai (indigo) from 4.5 g to 3 g, leaving all the other herbs in the formula the same. We just gave it to her and she sucked it down herself, holding the dropper herself, without a fuss. I was right- it was too strong this last time- and that’s why she was refusing it. It should still be strong enough to work; it might work a little slower, or maybe now its jore balanced and will work better– but it wouldn’t have worked at all if she wasn’t taking it!! It’s too bad we lost the continuity of taking a formula over the last several days, but we should be able to regain lost time now. It’s amazing what 1 gram of an herb will do.

I don’t want to scare you, but…

Tests, tests, tests. So many people seeking the needle in the haystack.

Adahlia’s hemoglobin was 8.6 yesterday, 3 weeks after her last transfusion. It’s not as good as we had hoped, being that she went 5 weeks between transfusions last time. She is slated for a transfusion next week (4weeks).

We still have hope that she is getting better. It has been a tumultuous month, and primarily my health took a downturn during it. Rudolph Steiner, amongst other things, says that a baby’s etheric body is tied to its mothers until it is 7 years old, and that the connection is especially strong as an infant, to the point that they really aren’t separate entities, and what happens to one will affect the other.

Considering my kidneys and the latest development regarding my health, i have to wonder: Am I (my health) causing the blood problems for her?

My pregnancy was so healthy.

Yet I have always had concerns for my heart; my heart and kidneys (bones), or the Shaoyin network in Chinese medicine, has always been the chink in my armor, my weakness, so to speak. (And of course, then, naturally, also my strength .) To describe how and give examples isn’t really my point, here, so you will have to accept it as truth for me, the same way some people might describe having a weak digestion, or weak lungs.

Anyway, what is going in with her is so clearly Shaoyin. Heart (blood) in Kidney (bones).

If she is tapping into my energies, then I do have more reason to hope that she will outgrow this, as she comes more into her own being.

I also have hope because she hasn’t been taking her Chinese herbal formula. It is too strong, not sweet enough, and I don’t have the heart to force it on her. So I adjusted it slightly and will pick it up tomorrow. Hopefully, then, she’ll take it. I really believe it helped last month.

Plus, our home is full of light spirits. The shaman says they stick around for 28 days post clearing, to keep an eye on us and help if we need them. I’ve been asking for their help in healing as much as thanking them for their help thus far. There is definitely a change in atmosphere of this house. It’s really pretty cool.

Today, I learned that maybe I am not a good candidate for the ureter stent surgery to help drain my kidneys because the pre-op ECG showed a T-wave indicative of a heart having a difficult recovery between beats. They had an ECG from 2011 to compare it to (I’ve had arrhythmia and palpitations for some time now) and its clearly a troublesome development. So they’ve ordered a chest x-ray and echo. They want to do a cardiology consult before surgery because they have concerns about giving me anesthesia now. It stresses the heart; my heart apparently doesn’t need any more stress.

Supposedly: “if you were a 60-year-old male, and this was your ECG, I’d say this was the pattern of a heart right before the heart attack.”

I couldn’t make this stuff up if I tried.

It is not super surprising because at my last acu appointment, the doc treating me said that my pulses made him more concerned about my heart than my kidneys.

It’s also not super surprising because of all the stress and anxiety related to Adahlia. (Stress-kidneys; anxiety-heart in Chinese medicine.) Plus, there’s a saying in Chinese medicine: “too much sorrow injures the heart.”

And our little family has certainly had its share of sorrow.

Its also not surprising because the warmth and energy of the heart must get down to the kidneys to warm and move the water, in Chinese medicine. This is a clue that maybe the kidney problem is actually more of a heart problem; so we need to treat the heart to treat the kidneys.

This might make sense because I didn’t test positive for kidney draining herbs. But I did test positive for herbs to help the heart and lung (the lung is necessary to distribute qi down to the kidneys).

And my heart and lung pulses are weakest, along with my blood pulses (left side.)

Isn’t all that super fascinating? Chinese medicine is wonderful.

Anyway, the good news is that Adahlia’s echo was yesterday and it is completely normal. There’s no heart defect (VSD) anymore. I’m very happy about that.

….

….

“I don’t want to scare you, but…”

I’ve heard that phrase so often in the last 10 months, related to either my daughter or myself, that today, it just made me grin and shake my head.

Nothing scares me anymore. (Though I always took the bad news well, I must say. I’m somewhat hard to shock or panic.)

Except when I walk in into the dark bedroom to join Adahlia in bed, thinking she’s alone in there, and a low voice drifts towards me in a whisper that’s almost a growl:

“I’m right here.”

…before I can place it as Joe’s voice, yes, that usually gets my neck hairs to straighten right up!

This House Is Clean

So, last night, a Lakota medicine man known through a couple friends (familiar to many at my graduate school) came with two helpers and together, after four hours, we prayed and sang and he engaged (ie, battled ) a hostile spirit in our house, and with the help of other spirits (light spirits) we returned the dark spirit living in our house back to the Creator.

The story is too remarkable to be placed here; suffice to say, for now, that the entire time I could barely believe I was witnessing reality unfolding in front if me – that it was actually happening in real life.

And now, though I was always confident in it, it was confirmed that the child I carried those 9 months and now hold in our household is holy. That the work I do is holy. That the world we live in is holy.

Really, I get choked up recollecting the details of the events. It makes it all – the last 18 months – such an incredible story. Our entire lives, the world at large, really.

We have a couple tests coming up for Adahlia- an echo of her heart, an ultrasound of her kidneys, lab work tomorrow with a possible blood transfusion on Friday, if her numbers are low. My CT scan indicates a collapsed renal tube (ureter) but the contrast dye had not sufficiently spread to indicate much more than that. A scope is indicated. Surgery in early May, to place stents to keep the ureters open, is indicated.

But we shall see. We are still taking the herbal formulas that we tested positive for, and I am still giving myself (and receiving from others) acu and moxa treatments. I will continue giving adahlia shonishin and moxa. I believe that now the force sucking our strength and muddling our clarity is gone, we will be able to build up our vitality, clear out the stagnation and blockages in us that have arisen from a lack of flow, and we will return to health.

The spirit in our house, well, he had his story, too, and it story was tragic. His grief had turned to rage, with a desire to hurt others, and naturally, also, a fear of returning back to God. But those layers were peeled away, the illusion of evil stripped to reveal a broken hearted man, and he has been taken back, by light, to light. We pray for mercy and compassion for him. We thank God and the angelic spirits still surrounding us for their guidance, protection, and the mystery of our roles here on earth.

Amazing. Blessed. Intense. Beautiful. Mind blowing. Miraculous. Experience.

The only thing is that we are renting this place, and we don’t intend to live here much longer.

Was it a wasted expenditure?

Heck no. Not if you consider that poor man’s soul.

Dear landlord, this house is clean.

Trust It

Its hard to say how Adahlia is doing.

She is giving signs of already being low in blood. In fact, she lost her “pink” as early as a week after her transfusion. She does not look waxen yet, though, and as of 2 days ago she could still turn bright red when angry, which is always a sure sign that she’s at least at 8. (They transfuse below 8.)

Watching her like this makes Joe and I crazy. Every month we witness her gradual decline, and in us builds up a powerless agony to stop it, which then culminates in the horror of needles and IVs and four hours of transfusion. Following that is the day of adjusting to the blood, during which she’s out of her skull, so hyper its more nearly manic. After that, we have the joyful days of health, and they last a week or two. Then, the slow decline…

Her skin is dry. Of course, Chinese medicine would relate this to a lack of blood and nourishing yin fluids. We lather her in coconut oil rubdowns, which she loves, accepting them like a naked beauty on a beach.

She had a very rough evening yesterday, as I was getting treatment from friends and colleagues, and this morning we probably had the worst diaper change in recorded history. She screamed and fought and twisted and screamed. I would hold her close, cradled in my arms, creating the nonjudgmental, patient space for her, to get it out. When she started to relax, I began to change her again, and she’d tense and freak out again, murmuring between her sobs as if praying for deliverance. Eventually, we made it work. I fed her, she napped, she woke up smiling. We were able to get her to agree to take the Chinese medicine without tears, but she didn’t want it. We never know with her. The next diaper change could be all smiles. She might suck down the herbs later today, pausing to look up at me with a “this is gross” expression on her face, which then bursts into a smile to see the love in mine. We never know. I just work to hold the space.

Its hard, beautiful work. We are so weary of tears. Sometimes it is so hard to remain joyful. It is so easy to get scared. (Fear is the emotion of the kidneys in Chinese medicine. Coincidence? I think not.)

“I just don’t see how this is going to end well.”

“Thats ok. Its ok. It might be that we are moving through something and we will all heal from this. Or maybe not. We don’t know. We can’t know. But we also do not know what’s beyond this life. People experience ghosts, light, god, nothingness. But no one knows, not really, what happens after death. And no one really knows, no one can know, why we are here.

Yesterday, with Leilani, I felt how I am not in my root chakra. My spirit is going up the chakras, as we know it does (in eastern medicine and spirituality) when separating from the body. I felt my lack of self in the lowest chakra. I can see how this is a part of what is happening.

Perhaps, at some point, I became afraid to be here. Perhaps I became too afraid for my daughter. Perhaps, awhile ago, I began to start the process of leaving.

Yet I also felt my heart chakra opening, and the warming of my pelvis and root as my spirit went down to reinhabit the area, and i breathed and opened myself to entering the areas of pain in my kidneys and pelvis. Then pain left me. I felt as vigorous in my body as a teenager or child, my body free and open and humming with energy. I experienced a transcended state of consciousness. All was bright and free and revitalized.

No, I do not know how this will end. I gave my life to the universe, to god, to serve the highest good awhile ago. And many times, for many people, such as Lennon, MLK Jr, bob marley, saints, and countless others who chose to live for a message of love, death comes early to claim them back.

If it is up to me, I do not want to die yet. I want to stay here, with my beautiful family, in a love very true, very pure between us. And I do not want Adahlia to die yet, either. I see such a wonderful future for us all, together, playing, and giving back to this world. Is that the highest good? Or is this life a vehicle for something else, and that would be better served by our early departure? Perhaps to reach more people? I do not know. I hope we get to stay here. To play and love and contribute to healing our world.

I feel I can heal from this, whatever is going on. Adahlia, too. Chinese and natural medicine is very powerful. If we are meant to stay here, we will.

All beginnings come from endings. All transformations come from death, figuratively or otherwise.

Witness the Phoenix. The Cross.

I believe we are here to play and to learn. To evolve into our highest selves. To become free and beautiful, divine incarnations on earth.

We must trust this process because we do not understand or know anything. I trust it. It is beautiful. What is happening is supposed to happen. Trust it.

Trust it.”

Steps

On Friday am, I am having a CT scan with IV contrast dye to check for “everything.” I found out I was actually supposed to have it earlier – there was an error, the doctor ordered it STAT but the order was entered wrongly into the computer, so even though it said STAT, it went into the cue with less pressing radiograph orders.

A long time ago, I stopped believing in coincidence. There was to much synchronicity in my life. And if everything happens for a reason, that that means things that look like mistakes, too.

Because of this error, I have been the lucky recipient of phenomenal Chinese and energy medicine care for a week. I have been taking the formula to clear out bacteria and virus pathogens (similar to what I took when I first ended up in the ER for an extremely swollen kidney back in November) at 1/3 increased dose. (Increasing dosage for Chinese herbs does not always have a desired effect; it is not a clear correlation of increased strength, like in pharmaceuticals, but sometimes it can make all the difference.). I have had a TON of moxabustion. I have done qigong and breath work. I have done (and received) reiki. I have drank unsweetened cranberry juice and squeezed lemons. Every morning, first thing, I’ve had a glass of juiced carrots, beets, celery, and apples. I’ve reduced my protein a little (protein is hard on the kidneys, but necessary for breastfeeding) and of animal proteins, I am consuming only eggs, milk, cottage cheese, beef, and whey, which, according to an article sent to me by an ND friend, are easiest for the kidneys to process. Yesterday, we went back to my esteemed herbal professor and got new formulas for Adahlia and I – to more exactly match what we currently need – which we started the first dose of last night.

I do not believe they will see any clear causes of my condition on the CT scan, and I don’t say that because I don’t want to get better.

I say that because I’m doing an accelerated version of what I did November-February, while waiting for follow up ultrasounds and consultations, and the significant improvement caused the doctors to determine that there was nothing wrong, or that maybe there was a stone they couldn’t see, but that they would just keep a watch on it.

My discomfort and back pains are greatly reduced. Yesterday my pains were mostly in my lower abdomen, perhaps my ureters. I believe my right kidney jet is functioning again, eliminating into the bladder. As I type this, I feel my left kidney is more swollen as it aches and throbs a bit… But that sensation comes and goes, at varying intensities, for both sides. We shall see.

Adahlia does not like her new herbal formula, which is a shame – she sucked down the old one with gusto. This one is stronger though, more of the primary antiviral, antibacterial herb in proportion to the other herbs, some of which taste either bland or sweet. The main anti pathogen herb tastes pretty nasty. She was clearly disappointed to discover the switch. Hopefully, though, she’ll come around.

I was able to give her a short moxa treatment today, too, with the Tiger Warmer, (sorry i do not have time to explain everything; i realize Chinese medicine is foreign to most folks, but you should be able to find answers on the internet, if you’re curious) and a very brief shonishin one. I hope to do more work on her tomorrow, but I really do need to focus on myself a bit. Saturday, she has an appointment with an expert shonishin person, so that is wonderful. She has an ultrasound of her kidneys and an echo of her heart scheduled this month, both because of my current issue and because DBA is sometimes associated with heart and kidney problems. (She actually did have a Ventral Septal Heart defect and functional murmur when she was first admitted at 6 weeks, but by mid-late Fal they were telling us they could no longer hear the murmur.)

Alright. I had gotten up to pump some milk for her and now, I need to get back to sleep. It is vital to healing.

Love to all. Our spirits are high and we are all happy, healthy, and enjoying ourselves, loving each other and looking forward to all we will experience.

Healthy Adahlia

I’m overwhelmed by the generosity and beauty of people responding to Adahlia.

I just found out that a song is being written for her, to be performed next Saturday, in Portland, by Sunjae Lee, who is quite a talented artist, musician, and (soon-to-be) doctor.

I gave him only one request, which is the same request I give to you, when you think of her (or me) and you pray or send love and light:

See her already healthy, see her happy. I want to fill the field around her with the idea of her vitality, with no doubt about it.  Picture her having shed this disorder, and now living freely in health.

Whenever you pray or in sending love and light, see her and our family healthy and happy and contributing our skills back to our world. Do not feel sad or desperate.  Feel joyful and healed, and in transmitting those positive vibrations to us, you will also benefit from them, and improve your own health, vitality, and happiness. This is the secret of positive prayer.

Lov,e

Breathe deep, seek peace

Yes, for those of you who are dinosaur fans, I am indeed quoting Dinotopia.

Adahlia is a dinosaur fan. We have a pop-up, touch-and-feel, interactive book that features dinosaurs. And boy, are there ever a lot of dinosaurs! They must’ve discovered at least 10 new types since I was a kid.

Anyway, her favorite page is one of an allosaurus that pops out at the reader. It used to scare her but she liked it… She would blink rapidly and pull away from the book as the page opened to him, but then she’d keep going back to it, like she couldn’t help herself.

Now, he doesn’t scare her anymore. His head and torso and right foot are currently held on by about 8 layers of scotch tape. His left foot is gone.

She has no concept of ruining something, or saving it so she can enjoy it in the future. Life presents her endless objects of interest. Her favorite things she destroys with fascination, and moves on.

I have a theory on god, you know. I imagine existence started out with the mentality of a child, like a child itself, and so first, on earth, created big huge crazy things called dinosaurs.

Roar!

Then, that got a little boring to a maturing creative force, so the slate was cleared to live on earth as human, capable of intelligent, and foolish, creation and destruction on a whole new level. Creatures with a conscience who could create new problems by devising solutions. Creatures with an appetite for knowledge, full of curiosity, and capable of wonder, hope, and despair and potentially knowing peace.

That’s not really what I intended to write about; its an old fancy of mine that just kind of came out. And it just so happened to bring us back around to the title. Isn’t that beautiful?

As I once said, as a kid, to my older sister: Everything moves in a full circle.

Ok, what I wanted to say is this:

They have scheduled a surgery for me for early May, to place stents in my ureters to protect my kidneys while they try to figure out a diagnosis and plan. To me, this means I have 3 weeks to heal myself. I would prefer not to undergo surgery because it would affect my ability to care for Adahlia, and she needs me. So as far as I’m concerned, I’m already better.

Adahlia is scheduled to start a regimen of steroids after her 1st birthday. Apparently, nearly 80% of children with DBA who go on steroids end up being able to make their own red blood cells, and they can be weaned down to just needing an extremely small dose of steroids daily or weekly to maintain production. What is interesting is that there is no medical basis for this phenomenon. As a genetic disease, it doesn’t make sense that steroids could override or reprogram genes, if the problem is indeed a faulty gene. And some children need such a minute dose of maintenance steroids that the dosing is practically homeopathic- so small, that the amount of physical medicine should not actually do anything at all, not to a normal, healthy person.

And yet, it does. It saves their lives.

Hmmm.

Even more amazing, some of these kids then end up being able to come off the steroids altogether. There’s no timeline; its unpredictable.

(Interestingly, and sadly, the disease can come back out of remission, too.)

The bottom line is that something a little stranger than a matter of straight, simple genetics – if this, then that – is at play here. Even within a single family, if two kids both have the DBA gene mutation, one may express health problems associated with DBA (which can range from mild to severe) and the other may appear completely healthy.

With only 25 babies worldwide born with DBA each year, it makes this an extremely rare disease, and therefore, one without a lot of studies and answers.

What this means to me is that we have 3 months for Adahlia to be cured using natural and oriental and spiritual medicine, before we will need to choose to expose her to steroids.

Right now, stop what you are doing and see her as fully healthy, right now. See us as a healthy, happy family, going out into, exploring and contributing to our world, right now.

Thank you for blessing our healthy, happy, beautiful child with your love.

Down, Not Out – Part I

As I told a couple different folks yesterday, I’m down, but I’m not out.

And Adahlia sure as heck isn’t either.

Today, for the very first time ever, I was told that my urine sample contained bacteria. (Yes, this is a website for Adahlia, but I feel strongly our conditions are linked… Especially as they have developed together. I’ve never believed that her case was a straight, simple, genetic bone-marrow failure.)

What does this mean? We don’t know yet. I think this is the first time my urine has come back positive, not “perfect” (and a big reason I haven’t gotten better, appropriate care) because a) I’ve been breastfeeding, and therefore drinking insane amounts of water and b) this is the first time they’ve asked for first-thing-in-the-morning pee, which is the most concentrated, and most likely to show bacteria. It’s something to think about, for the doctors who read this blog, next time you have a mystery patient with hydronephrosis.

In the past 48 hours, I’ve done qigong twice, given myself 2 moxa treatments, and Joe’s given me the most amazing reiki treatments.

I feel i am mending, healing. During treatments I feel warmth, openness, and pulsation, and a lack of pain, a freeness, in the areas of my back and abdomen that otherwise feel cramped, dark, heavy and painful. It is the sort of things a skeptical person would say are impossible to feel, just as a human might tell a bee it is impossible to see the ultraviolet light patterns of a flower, simply because he cannot see them himself, when really, its matter of sensitivity.

Am i out of the woods? Heck no. There is still a dead-feeling, thick, achy, heavy thing in my mid-right-back. But I believe it can be revived, for my Right Kidney pulse is still there, albeit struggling, and I can feel my right kidney channel now, all the way down to the ball of my foot, where it gets warm during treatments, and there is an electric, static-buzzing-surging sensation, and the image is like that of a bubbling warm spring, turning back on.

Is Adahlia in the clear? No. But we are going to keep up this intense pace of treatments until I am definitely better this time. And I will keep at her treatments, too, which I will tell you about in a bit.

I’d like to thank all the kind people who have and are donating their healing skills, time as babysitters, and groceries. Everyone who is sending prayers and energy. I thank you so much for sending your love.

Now let me tell you a bit about our story.

My pregnancy was beautiful. Exhausting? Yes. But beautiful, and I (we) were blessed in many ways during it. The birth, likewise. We chose to do it naturally, at Andaluz Waterbirth Center, and it was the most romantic, deeply sensual experience I have ever had in my life. Painful? Yes. But glorious. Ridiculous glorious.

There was one – ok, two – major hiccups in the pregnancy. First, I got in a car accident just shy of two months in. It wasn’t super serious, but it messed up my neck and back, especially because my hormones were already loosening my ligaments, and compounding the effects of the initial trauma, as well as making it more difficult for vertebra to stay in place whole set. The blessing in disguise, if course, was that I was able to receive really quality care during that period of time. Do I think it played a major role in her (our) current condition? No.

But the second thing, I think, did. During the 7th month, I had an episode of INTENSE back pain, mostly on my right side, but it traveled down my flank. It was so bad, I nearly vomited. I rested for 2 days with a heating pad — the only thing that could take the pain down even a notch was high heat and lying still, on my right side or back. It scared me, and I told my care providrs about it, but imaging isnt really an option during pregnancy, and i was adamant that no one would take away right to natural birth. Besides, it kind if sounds like passing s kidney stone right? So we decided to wait and see.

During this time, my kidney pulse, which sudden strength is an indicator of pregnancy, and was stronger on the right than the left, because I was carrying a girl, suddenly dropped out. I was very concerned, but I was under the care of an expert acupuncturist at the time, who told me not to worry, and she doubled her efforts in treating me.

A couple weeks later the pain happened again… it started gearing up and i took preventative measures of heat and rest, and it never reached its zenith. I never took any drugs for it. During the birth, my back pain was excruciating. And then, I had difficulty breastfeeding side lying on the left – the only way to lessen my pain was to lie on my back or on my right. I gritted my teeth and did what my baby needed.

At the time, I assumed my pain was musculoskeletal and it lessened over the weeks.

But Adahlia, hers didn’t.

When she was born, she shot out into the water, I scooped her up, joes hands behind mine, and we held her to my chest. Adahlia did not cry- she looked up at me with her big black eyes, exhausted but serene, like a supernatural being, and I whispered her name to her, which she accepted with apparent solemnity.

She cried a couple hours later that night, for about an hour, when I fumbled her a bit, trying to get her in a good position for feeding. But in general, she barely cried those first days, and when she did, I knew it was for food or comfort and I was not alarmed. She actually smiled in her sleep, and once, while I fed her, she smirked at me, as though laughing at me. Our connection, bond, which had grown during pregnancy, was great.

Until about 3 days post-birth. Then, she lost her shit. There is simply no other way to put it.

She began screaming incessantly. When she wasn’t asleep or feeding, she was screaming at full bore, as though terrified or in excruciating pain. She was truly inconsolable; she HOWLED.

I know what you’re thinking: allergies, right?

No. I did not do a full elimination diet, as I was weak and fatigued, and strangely cold, despite friends telling me that the heat of pregnancy stayed with them through breastfeeding. i had little appetite, but for ed myself to eat, knowing we needed the energy. We cut out dairy entirely and limited other common sensitivities to no avail.

Nothing we did helped – and we tried everything. We gave her massages and baths and massages in baths. Refusing to accept the verdict of colic, and a baby in excruciating pain for the first 3 months of life, we took her to renown homeopaths and a retired, expert baby body-psycho-therapists, who agreed to come pit of retirement to see us. It helped, but it didn’t fix her issues. The midwives were at a loss. She still screamed, and it was terrible. It was sometimes as if she were seeing ghosts. I felt strongly that she was in great pain, under attack from something. She was trying to get me to help her. We did energy work, reiki, with her when she slept and when we held her and whenever possible. Sometimes it seemed to help. Sometimes, it seemed like it made her only scream more.

The only thing that nearly always helped was for me to really connect with her in her misery, to let myself come down and feel her pain as if it were my own, to the point where tears streamed down my face. Then, sometimes, she would stop crying and pass out. But to do that multiple times a day was exhausting… and sorrowful. The only other thing that would help was when I would chant and sing to her, in low, rising, and falling sacred tones and syllables, as we slowly rocked and walked. Then, sometimes, she’d rest. I would chant and sing to her for hours.

The only other time she often did not cry was in the presence of strangers, when the grandparents or friends came to the house. She simply huddled close. In general, she seemed terrified, and angry, and in pain.

She had bruises on the inside of her legs after about a week, where her diaper pressed against her legs. She was no longer relaxed; a very tense baby. She was pale and looked yellow to me at times. People remarked on her paleness but no professionals felt concerned. I knew something was wrong. It wasn’t just colic. I searched the internet and asked the midwives again and again if it was possible she had an infection. She had no fever; they shook their heads. Our lives had become living hell. Older women smiled condescendingly, and peers commiserated, saying, “new baby, new parents!” But no one took us seriously. At her four week checkup, her weight was still up and seemed healthy, medically.

Then one Monday, I went in for another follow up chiropractic appointment at Growing Care, one day shy of Adahlia’s seven week anniversary. Over the past 36 hours, she had slept more, and eaten less. She was never chunky, but we had noticed she was becoming a thin baby now. And truly pale. But after so many folks had dismissed it, we had begun to accept it. Our final well-baby appointment with the midwives was scheduled for later that week.

… And now, I must go in to my doctors appointment. More later…