Cranial osteopathy

My other resume

Posted on by amberhj

I’ve jumped back into the freelance writing life in an effort to make a bit of money while I stay home with Stella Bella. This, of course, necessitated the updating of my resume.

It got me thinking. Some of my most impressive achievements and abilities will never grace the pages of this supposedly all-important document. And it seems like a shame. I am referring, of course, to motherhood–all that it requires. And with that, I present my other resume…

EXPERIENCE

Mother, 8/17/08–present (lifetime commitment)

  • Collaborate with Stella Eleanor’s father (my husband) to ensure that she grows and thrives; oversee everything from basic maintenance, such as diaper changes and feeding, to high-level development including babbling, drooling, sitting up, laughing, and rolling/tummy time, with plans to teach her how to be kind, walk, use the toilet and drive
  • Provide attention, protection, guidance and full range of entertainment services including peek-a-boo, tickling, general zaniness and impromptu songs, stories and farting noises
  • Willingly put my daughter’s needs before my own while still taking care of self and providing excellent example of how to live life to the fullest
  • Manage public relations; handle photography and mailing of seasonal cards and wellness updates; manage upkeep of Flickr account with near-daily shots of Stella to prevent extended family from suffering cuteness withdrawal
  • Love that girl with all my heart, 24 hours a day, seven days a week, 52 weeks a year–even when her yelling reaches peak annoy-ability levels

Giver of Life, 8/15/08–8/17/08

  • Gave birth to baby girl weighing 7 pounds and 7 ounces; filled with pure joy upon her arrival
  • Kicked ass throughout 32-hour un-medicated labor during which baby’s head was transverse (sideways)
  • Nearly broke husband’s hands with vice-like grip; will try harder next time

Grower of Human Being, 11/08–8/09

  • Provided egg for successful fertilization; worried endlessly about fetus from moment of conception
  • Attended prenatal yoga, birthing and parenting classes despite overwhelming exhaustion and overwhelmed bladder
  • Ate enough cheese to feed all of Wisconsin for three years; consumed record amounts of grapefruit juice
  • Tolerated the shooting of sharp pains up my rear-end for several months; withstood debilitating hip pain and baby’s roundhouse kicks
  • Enjoyed pregnancy despite all of the above

Warrior, 10/08–02/09

  • Assembled and coordinated a top-tier team of Seattle doctors, as well as two lactation consultants, an occupational therapist, nutritionist, dietitian and cranial osteopath
  • Managed to maintain sanity when baby refused to eat; chugged olive oil and ate bacon in a valiant attempt to fatten starving, anxiety-ridden self and improve quality and caloric value of breast milk
  • Mastered use of Supplemental Nursing System while successfully limiting use of the “f-word” to 400 times per day; managed insertion and maintenance of god-forsaken nasogastric feeding tube and associated god-damned pump and evil face tape and crap-tastic peripherals; sacrificed small but previously perky boobs to hospital grade breast pump
  • Navigated labyrinth of hospital and health care challenges; slashed red tape and improved child’s outcome by 1000%; successfully argued case for the removal of nasogastric tube and executed successful tube weaning; produced a happier child and family as a result of round-the-clock efforts
  • Analyzed growth charts, lab results and intake levels; conducted in-depth, terrifying online research on daughter’s condition and treatment

EDUCATION

The Parental Institution of Barbara and Gregory Hescock

  • Coursework in everything, with an emphasis on love, the value hard work, and a good sense of humor

School of Hard Knocks

  • Classes included Terrible Mistakes, Bad Relationships 101, and The Awkwardness of Middle School

Sink or Swim Academy

  • Curriculum revolved around parenting without anything resembling adequate preparation

SKILLS SUMMARY

General: Expert-level nurturing, crisis and conflict management, hazardous waste handling and sanitation, budgeting, soothing, teaching life skills and morals, child safety, nursery decorating, baby-wearing, silly face and nonsensical sounds mastery

Technical: Milk production, human creation, swaddling, rocking, one-handed diapering (experience with both formula and breast milk poop platforms), bottle maintenance, reflux abatement

COMMUNITY SERVICE

  • Contributed a new member to the human race
  • Responsible raising of a kind, compassionate, contributing citizen
  • Adept removal of screeching baby from public places, ensuring a peaceful community
  • Addition to the world of a love that grows by leaps and bounds each and every day

Please no.

Posted on by amberhj

Stella has been getting more and more difficult around eating again and I am starting to freak out about it.

She is starting to refuse the bottle more and more. She doesn’t want to eat upon waking up after sleeping for 10 to 11 hours. We now wait an hour after she wakes up, and even then she only takes 100 mls. Prior to this rough patch, she was taking 150-190 from all bottles. Spoon feeding is really challenging–it’s not her lack of interest that bothers me, it’s that she gets so upset when you offer it to her. She will take some if she holds the spoon, however.

I am really concerned. To be honest, I am feeling like I physically can’t continue to worry about and deal with the trials of this feeding issue. We’ve been through so much already! I feel such a sense of dread. It’s just so frustrating and draining and worrisome. I was so sure that she was on solid ground. Now the earth is crumbling beneath us.

I thought we were past all this.

I really hope that this is a fluke. Or that a tooth is coming in. Or something innocuous explains this behavior. Perhaps reflux is flaring up and we need to up her dosage. Maybe we need more cranial osteopathy sessions. I can’t wait to get on the phone with Robin, her occupational therapist, and talk about it. This is tearing me apart. My mind races with worry. I feel a bit sick to my stomach again.

Wish us luck…. thank you.

A freakout. A rant. And endless gratitude.

Posted on by amberhj

Don't worry, it's just prunes.

Don't worry, it's just prunes.

Early this afternoon, Stella got upset and took only 100 mls from the bottle. It was really weird. All my fears and worries came rushing back.

Granted, she took around 180 before and after that. But what a scare. I was so upset, I yelled at Cody like a maniac. He was holding her because he wanted to try feeding her again, after I told him what had happened and how she didn’t seem to want to eat and was getting fussy about it, but all she did was cry and cry so finally I screamed from the other room, “JUST GIVE HER THE PACIFIER!!!” The idea of trying to feed her when she clearly did not want to sent up an army of angry red flags. Forcing it never works–it makes her want to eat less. Not that he was really forcing it, but he was nearing that old territory in my mind and I could not handle it.

It will take a while for me to really accept that she will not always take what I expect and that this is okay.

In the background, I am feeling nervous about her six-month “well child” visit with her pediatrician. He hasn’t seemed to have fully understood how well she is doing. How huge it was for her to start enjoying eating and to not only not lose weight but to start to gain a decent amount after just three weeks without the tube. I mean, it doesn’t really matter what he thinks. And there is no chance of Stella the Tube Girl II showing in theaters–ever. That sequel will never be made. But still. The last couple of times I’ve left his office feeling pretty crestfallen. Like the feeling of letdown when you go on a great first date, then have a terrible second date. You just feel so deflated. The neurotic me (well, maybe that just is me) is afraid that if Stella doesn’t gain an insane amount of weight, he’ll act all concerned and I’ll get all riled up and strongly disagree with him and stand my ground but then secretly, after we leave, I will worry about everything he said and fall apart and it will be unpleasant for all.

So I weighed her today. It was totally unnecessary and probably counter-productive. But I just had to. She weighed in at 15 pounds, 14.5 ounces. So by our count, she’s gained about 8 ounces in ten days. It’s great! Of course, I hear the doctor’s voice in the background saying how he likes to see an ounce a day. But from what I understand, around this age, the rate of gain slows down naturally. And really, she’s happy and healthy and clearly gaining an appropriate amount of weight so who cares!

She’s a week away from her 6-month birthday and when she hits 16 pounds, and clearly she will surpass it by several ounces, she will be above the 50th percentile curve, I think. She was in the 50th when she was born. I will remind the good doctor of this if need be. Have I told you how much I hate percentiles? They drive me nuts. I think that unless a baby is in trouble, no parent should even know the percentile. What’s the point? There are chubba-butt babies that are completely off the charts and their parents know they are big babies. There are babies that are petite–I have a feeling their parents know they are small having looked at them every moment of every day–and very content in the 3rd percentile. And the vast majority of these babies, all over the spectrum, are healthy. So what’s with the percentile obsession? The growth percentile calculator on BabyCenter says, “See how your child’s growth compares.” So there we go, comparing our babies with their peers right out of the womb based on some number that, for the most part, means nothing. I doubt my parents knew what height/weight percentile my sisters and I were in. And I KNOW they didn’t chart our head circumferences! They just knew we were eating, pooping, sleeping and, overall, happy and healthy. That was enough! And it should be for today’s parents. Rant over.

Yesterday’s occupational therapy appointment went very well. Stella ate beforehand, so Robin didn’t get to see how fabulously she eats, but we were able to discuss her amazing progress, affirm the whole journey, and get some questions answered. We got some great tips on how to encourage her to get more comfortable on her tummy and with rolling and sitting up. We learned that we should definitely proceed with spoon feeding full steam ahead and not worry about it adversely affecting bottle feeding. We have some other decisions to make–like when to switch to 20-calorie-per-ounce formula and whether we want to see if the baby food in the bottle really is making it more appealing or if it was just coincidence. I think Cody and I are reticent to switch anything up just yet, but we probably will at least switch her to 20-calorie-per-ounce concentration, as it is the standard for breast milk and formula and may better allow Stella to regulate her intake.

I gave Robin a “thank you” card and photo to remember Stella by–one in which she is clutching a bottle the way Gollum held the ring. I remember our first meeting with her well. We were so thrilled to be there. To finally be getting the help we needed, from the best of the best. (Robin is a renowned feeding specialist.) I’d been trying so hard to get Stella to eat for at least a month at that point and I was falling apart. No one had been able to figure out what was wrong, and they didn’t see the daily struggle and didn’t have the sense of urgency that was needed to move things forward. I felt so alone and hopeless and worn down. During that appointment Robin said with such confidence, “I’m going to see you through this.” And she did. As I reminded her in the card, she listened to me cry and rant. She calmed me down, educated me and backed me up. I am forever grateful.

And that reminds me of all of the incredible people who helped us weather the storm…

Barbara Hescock, my mother, who stayed with us for almost three whole weeks and spent Thanksgiving cooking for three, two of them severely depressed, in our crappy kitchen instead of her new wonderful one with a crowd of eager company as she’d planned long before… she arrived during our stay at Children’s and got me through the worst days of my life, helped me rise to the challenge of dealing with the difficulties of the tube while feeding me (everything made from SCRATCH–even tomato sauce–with so much love) so I didn’t disappear just as she so graciously did during Stella’s first weeks–she was the hands behind my hands, just what every new mom truly needs–and who even tolerated me snapping at her a couple times without holding it against me

Robin Glass, MS, OTR, IBCLC, occupational therapist, who, as I just mentioned, was our rock and provider of wisdom, sanity and hope!

Devorah Steinecker, MD, cranial osteopath who treated Stella about a dozen times and helped to greatly decrease Stella’s reflux and aversion, who was 100% confident that Stella would get better and became one of our biggest supporters when we removed the tube, a time when we really needed positive voices around us

Sarah Tyack, RN, lactation consultant with whom I met several times who helped identify Stella’s reflux, a major breakthrough, and who saw me at my worst and instead of judging me, connected me with the help I needed to cope and the help Stella needed to recover

Janet Whalley, RN, co-author of Pregnancy, Childbirth, and the Newborn: The Complete Guide and lactation consultant that I met with several times who became a mentor and person to call when I got worried, who was always so understanding and concerned about us and provided any and all ideas and information she had

Ann Keppler, RN, co-author of Pregnancy, Childbirth, and the Newborn: The Complete Guide and very well known in Seattle for her mindblowingly helpful First Weeks seminars, she sent me the most amazingly supportive and helpful email in response to my random, frantic email to her

Judy Herrigel, RN, founder of First Weeks and longtime lactaction consultant to whom I reached and talked to about Stella’s issues and who expressed much compassion and understanding

Dr. Trish Raymer, one of Seattle’s VERY BEST family practitioners–my doctor and was Stella’s doctor until we switched to Numrych who had instant access to all of Stella’s lab results, appointment info, etc. at Children’s Hospital which made our lives easier–who got Stella in to see Robin and who admitted us to Children’s when she saw that we needed urgent help, and who was always so delighted to see Stella that it warmed my heart even on my soul’s coldest days

Dr. Thomas Numrych, Stella’s current pediatrician, who returns my emails and calls and spent a lot of time talking to me during our toughest days… I have been complaining about him a bit,sure, but I think he’s a good person and good doctor

Dr. Marguerite Dunitz-Scheer, director of the tube weaning clinic in Graz, Austria who always knew that Stella could do this and who helped convince me to let go of at least some of my fear

Kathleen Kendall-Tackett, Ph.D., IBCLC, a breastfeeding expert—whom I’d heard talk about postpartum depression and breastfeeding issues in a podcast and emailed out of the blue–who talked to me for quite a while on the phone trying to troubleshoot our issues and provide encouragement

Dr. Jessica Bloom, cousin who just so happens to be a pediatrician, who talked me down from ledges and watched Stella for a whole day (after all, if you can’t let a relative who is a pediatrician watch your child, then you are hopeless!), when I was really low and about to starve to death from anxiety

Barbara Reilly, a wonderful, funny, compassionate friend who provided much needed food on multiple occasions and insisted on watching Stella, allowing us to get dressed up and go out for five whole hours!

Susie Estok, a fellow writer and kick-ass friend who watched Stella while I got my hair cut then spent the day with us, making me feel a lot less lonely and lot more hopeful

Maureen Devine, a friend and co-worker with the most amazing heart who stepped up to provide nourishment and support

Rocio Carballo, a mom who was in the same boat with the same fears who contacted me through the blog… we were able to relate and helped pick each other up when we were down and I’m so happy to say that her precious Diego is also tube-free and eating like a champ!

Dr. Stephanie Farrell, an engineer and professor that I don’t know at all and emailed out of the blue about her experiences with tube weaning her own daughter and who sent me the most supportive, wonderful reply

Trish Norton, a mom (to whom I was connected through Robin Glass) who went through very similar struggles with her daughter Libby and who took time to talk to me, a complete stranger, honestly and openly about her experiences and how she got through it, making me feel so much more normal and less crazy and alone

I will always think of these people with such fondness and gratitude. When Stella was not gaining weight, before we had any idea of what was bothering her, that growth percentile curve felt like a cliff. We were careening around a narrow corner and about to fall into a deep, dark abyss when one by one, Team Stella stepped into our lives, and gently but firmly pulled us away from the edge.

Yes, these people are Team Stella, forever!

Thank you.

The stubborn determination of hope

Posted on by amberhj

Good news. Stella is back to taking in about half of her daily calories from the bottle, just as she did before the recent regression.

However.

My feeling is that the tube is preventing her from recovering completely. I believe that it exacerbates her reflux and makes swallowing more difficult. I found and paid for two medical research papers that support my beliefs. I hope that she proves me wrong, and soon, but I am unconvinced that our current mode of treatment will enable Stella to return to 100% normal bottle feeding. I am ready to take urgent action. I am questioning the medical establishment and ready to try something else.

I learned about and have been in touch with a renowned feeding clinic in Austria. Their cold-turkey approach to tube weaning is radically different that what is practiced here in the states. They believe that the baby or child must drive their own intake, rather than the tube. They share my belief that tubes, over time, worsen aversions and lead to tube dependency. They have studied the topic for over 15 years and have a success rate of 92-95%, depending on the age group. The doctor who runs the feeding clinic told me that Stella’s age is ideal for weaning and that we may be able to achieve it through email coaching, rather than having to go all the way to Austria–although I am eager and willing to go to Pluto if that’s what it takes.

The drawback to this method, what is called the “Graz” approach, is simple. The babies and children treated may not gain weight for a month or two. I believe that Stella would be on the shorter of those timeframes, since she already takes half of her formula orally and the clinic treats many children who are 100% tube fed. Stella will be hungry and not fed until she asks for food. This may seem harsh to some, but I believe it makes sense. I believe that Stella, if able to have more control over her eating and freed from the discomfort and difficulties of the tube, would respond very well. But she would need some time to pull through once the tube is removed. Most doctors here are not willing to let a baby have low or no weight gain for any period of time, so the tube stays in. They, of course, have the babies’ best interests in mind, but they seem beholden to the tube and unaware of, or too willing to overlook, its detrimental effects in the name of weight gain. I believe that any short term weight gain delay would be more than made up for with the restoration of a healthy relationship with food and the resulting appropriate, baby-driven weight gain that would follow.

Stella’s life was never in danger. The tube was placed for therapeutic purposes, not just to help her gain weight. The tube was helpful in allowing Stella to say “no” and be heard, instead of constantly being force-fed, which must’ve been very traumatic for her. The tube took the fight away from eating. The tube has enabled her to make progress. But I believe that we have reached a point at which the tube’s negatives outweigh the positives. And I am ready to take bold action in the face of a lot of opposition in order to do what I believe is best for her.

Cody and I are going to consult with her occupational therapist and pediatrician on this. We will continue to bring Stella to a cranial osteopath. We are going to do some research into the Graz method and the Austrian clinic. And then we are going to decide how to proceed. Of course, in the meantime, we would love to see Stella down bottles left and right, thereby eliminating the need for tough decisions or new approaches.

Even on gut-wrenching days when Stella resists the bottle like it’s full of toxic waste, there is an incredibly wishful part of me that looks to the next bottle as a possible turning point. There is a clump of raw hope that sits smoldering in my chest like an ember in the darkness. It’s always there. And it’s going to light the way to a tube-free Stella.

Lucky 14?

Posted on by amberhj

Stella takes a step forward...

Stella takes a step forward...

It’s great that my appetite is back. Because I have some words to eat. In my last post, regarding Friday’s doctor appointment and weigh-in, I stated, “I’m certain that she won’t have gained the ounce per day that the doctor would prefer to see.” Over the two previous weeks, she’d gained ten ounces total, or five ounces a week. So I expected more of the same, since we’d only increased her intake by about 20 mls a day. It had been exactly one week since her last appointment, so a good gain would’ve been seven ounces. Well, Stella somehow managed to gain 11 ounces! She now weighs 14 pounds! We were amazed and encouraged.

Her doctor said that this type of weight gain suggests that there’s no obstruction or other structural problem. The food is passing through her system and being digested and utilized for growth. (Though, Stella will still have an abdominal ultrasound on Wednesday, just to be sure.) As her reflux and cow’s milk protein intolerance have been treated, the good doctor believes that this is now strictly a feeding issue that will resolve in time.

Friday’s second appointment, our foray into Cranial Osteopathy, was fascinating and uplifting. We are now seeing Dr. Devorah Steinecker, a holistic pediatrician–an M.D. with additional training in neurology, developmental pediatrics and pediatric osteopathy.  She was incredibly optimistic about Stella’s condition and totally confident in her ability to resolve Stella’s feeding issue.

I learned so much at this appointment, about an area of medicine I didn’t even know existed until a few days ago. My understanding is very limited, but in a nutshell, Dr. Steinecker believes that Stella’s issues were caused or exacerbated by compression to the skull that occurred during birth. An intense, 32-hour labor and the transverse (sideways)  positioning of Stella’s head put a ton of extra stress on her skull, focused mainly on the the occipital (rear) bone (which is composed of four parts in newborns), where the nerves controlling swallowing, appetite and digestion are located. The plates of the skull are designed to move and compress during birth, but Stella was subjected to an extreme amount of pressure, resulting in more compression of the bones and nerves in that area. Through gentle, hands-on manipulation, Dr. Steinecker can make tiny adjustments to the bones’ positioning, restoring balance, relieving tension, and freeing those nerves to function properly. That’s just my basic, quasi-ignorant understanding. If you have a question, please leave it in a comment and I’ll do my best!

We went back to Dr. Steinecker for a second appointment the next day, on Saturday evening, to speed things along. I’m almost afraid to say this, but we may already be seeing improvement. On the way home from yesterday’s appointment, Stella seemed hungry so I offered her the bottle. She took 50 mls while in her carseat, as we were driving. She didn’t fight the bottle, and gulped it down quickly and comfortably. This is pretty much unheard of. To feed Stella, I have to hold her in my right arm while standing and performing deep squats to provide her with a calming, steady bouncing motion while facing Christmas lights or another mesmerizing visual distraction. Later that evening, she took 100 mls, easily. As you may recall, her first bottle of the day is “always the worst” (more words to eat?). But this morning, she took an entire 115-milliliter bottle in five minutes. At her second bottle, she took 85. Holy crap.

Of course, other efforts may help explain this apparent upswing in bottle feeding. The new ratio of formula to thickener (one packet of Simply Thick to eight ounces of formula) along use of a number three Dr. Brown’s brand nipple (instead of a number two) seems to be a great combination for Stella. We don’t want to get ahead of ourselves, and we anticipate more ups and downs, but we are seeing progress!

Last night, it snowed in Seattle. The first flakes fell as we left her appointment with Dr. Steinecker. Snow always sparks excitement in me, probably due to giddy memories of sledding and snow days, crucial parts of any east coast upbringing. At the same time, snow makes the world seem more peaceful. At that moment, as we walked outside and admired the flurry illuminated in the street light, all seemed right in the world. Tube and all. There was, and is, a sense that the tube will be gone soon. When Stella is ready.