aero&momma

Safe Swallow

The qualifier that devastated me? “One to two years”, stated Lynn, the feeding therapist at Children’s Hospital. I felt the immediacy of waterworks spring to action. I tried to hold back the tears but they just slid, big, fat, wet, akin to my dreams and hopes of a speedier G.I. tube removal.

She wanted to make sure I was grounded in reality. That I understood that weaning a child from a feeding tube was a long, slow, arduous existence.  “Really, I replied, a liquid diet for Aero for 2 years”? That just seemed incredulous, laborious, effortful. My brain tried to calculate what it would all mean but it was impossible to comprehend; blenderized diet, lots of chopping, pulverizing, pureeing, time. Time, time, time, time….we already existed on such a short leash because of the every 3 hour pump feedings. I live constantly calculating timing of the next feeding and therapy, doctor appointments, grocery shopping, day to day errands.  Imagining that existence for another two years made my stomach knot and nauseous. And that ever looming question rears its ugly head again, will life ever be, gulp, normal? Now, I am not naïve to mean normal as in pre-Aero existence. I mean spontaneous, ‘a grab the diaper bag and go way of being’ without the constant calculation of the ‘distance traveled, time spent at location, gotta get home in time to pump breast milk and feed’.

Why were we at Children’s Hospital? The therapist that works with Aero at home, Gaye from Boyer Clinic, expressed concern regarding Aero’s swallow. She described it as ‘effortful’. In teaching him to take a bottle, he gulps down tiny amounts of breast milk as if he were swallowing a dry as sawdust turkey sandwich a week after Thanksgiving.  His swallow is audible, a deliberate gulp with a thump. We were at Children’s to determine if Aero was a candidate for a ‘swallow study’. The answer? Most definitely, yes. The study is scheduled for Friday, July 29^th.

At Gaye’s next visit, I relayed to her the happenings of the Children’s Hospital experience. She was happy that the swallow study was scheduled. More to my liking, she totally disagreed with the assessment of the feeding therapist. She works with Aero every week and knows his courage, his determination and temperament. How in just a month his very shallow gag reflex is now ‘normal’. How he now sticks his thumb and fingers in his mouth to suck on vigorously. He still will not have anything to do with a binky and that’s OK. I like to think he adopted his mama’s aversion to all things plastic!

On this visit, I shared with her that I am totally OK with letting bygones be bygones. Let’s say goodbye to my breast feed/bottle dream. It is just not age appropriate anymore. He is 6 months old and wanting to explore food. I have given him tastes of yogurt and applesauce and he reacts excitedly with more, more, more wiggles in his body. Gaye decided to break out the baby food purees and fed Aero with small amounts on her fingertip. Aero went berserk for pears and raspberries and even more enthusiastic over carrots!

The outcome of the swallow study will determine how we will move forward. Given a diagnosis of a ‘safe swallow’ means that we can vigorously march down the road of introducing puree at a greater volume, like on a spoon. It means teaching Aero to use a sippy cup with straw so he can take a breast milk/puree smoothie and cut back on some of his G.I. tube feedings. It means Mama sees a light at the end of the G.I. tube tunnel.

 

 

aero's choice

another post created by a one-handed peck at the keyboard while holding sleeping aero. pardon the non-use of capitalization. want to provide an update on progress. the goal now that we are home, sweet home is 100% feeding by mouth. where are we? 1/2  %.

this is why...aero spent the 1st 3 months of his life with a hard, plastic tube threaded through his nostril, down the back of his throat, stopping a centimter from the blind pouch of his upper esophagus. it's purpose was critical, life-saving. it provided intermittent suction for secretions of mucus and saliva, the stuff that our body produces and we swallow down a million times a day. aero swallowed and it pooled in his blind pouch. hence, the need for suction tube to remove the secretions so they did not aspirate and asphyxiate.

for aero,  the placement of this tube, called a replogle, created an extremely shallow gag relex. baby could not even stick a tiny bit of finger in his mouth without illiciting a very strong retch. what does this mean when a baby's strongest instinct is to suck? aero could not suck anything, definitely not his mother's breast, not his fingers, not even a binky, nothing. 'oral aversion' is the term used by feeding therapists.

which is where we are at now. aero's therapy/rehabilitation is re-learning a survival, inate instinct. not just the mechanics but also integrating that the sensation of suck and swallow is enjoyable, pleasureable.  it is a slow, plodding pace. thankfully he is a courageous student. and, i am also grateful that he has a g.i. tube to administer nutrition (breastmilk momma pumps 8x a day). this alleviates the pressure, stress, anxiety of 'is he getting enough nutrition' ? 

2 months out from surgery and he is just becoming comfortable with his own fingers. yesterday was a milestone that he allowed me to put my index finger on his tongue. huge accomplishment. really. now, i have to work on resting it there for more than the milisecond he now permits. then i work on allowing for  placing it further into his mouth. as the therapist says, "we need to push that gag further back".

'pushing the gag back' will hopefully allow him to become more comfortable with opening his mouth wider to accept a nipple and creating the necessary suction to either take a bottle or breast. nothing is sacred for me anymore. i was desperately hoping to experience one 'typical' rite of passage, breastfeeding my baby, on this most atypical of journeys. i gave up my expectation last week in a jagged crying session. just another lesson in the million i am ready to learn in this heart opening  journey called parenthood. breast, bottle or pureed peas, it is all aero's choice.  

stuff to say

i spend my day nurturing  aero, a 20 week old wonderkind of pure joy & delight. several of those hours are spent holding him while he slumbers. i can baby stare with the best of 'em but occasionally my thoughts meander, wander, twist and turn. so, here i am pecking at the keys with one hand, hence, no capitalization. i can undoubtedly inform you that single parenthood maximizes your 'one-handed or subtly shove it over here with your foot' skills. 

the puzzlement of today is how/why am i growing these freakishly long fingernails? seriously. i have never had fingernails, always stubs. my hands are constantly in water. i wash up the breast pump apparatus in scalding, soapy water at least 6 times a day and nary a rip or a tear.  and don't tell me the prenatal vitamins 'cause they are not helping my hair. it is falling out by the handful. it is lucky if it gets washed once a week. personal hygeine standards are not my greatest priority, right now. i am thrilled when i manage to brush my teeth before 11 am. the thing is i really should cut them cause i am bound to scratch the baby. yet, i am so fascinated and amused with their mutant growth that i want to see how far they g0 before ripping, tearing, splitting just as they did before. 

b&bean blog is now aero&momma. stay tuned for the wonder of it all.

B&Bean Update

 
Beautiful Friends,

My heart is so full of gratitude for the outpouring of love & support. Thank you for all your prayers and well wishes.

It's been a long, anxious day and I am so tired. However, wanted to give you the details before going to bed .

Met with my midwife group on Monday evening. They told me at this meeting they would be transitioning my care to a periontologist (high risk pregnancy specialist) at Swedish Hospital. I had an ultrasound the week before on the bequest of the midwife and the results prompted the transition of care. Reason being is that, well... . you know, you have seen the photos....I am huge. My uterus measures at 50 weeks and I am only in my 35th week of pregnancy. The concern is my level of amniotic fluid. My marker is 45, adequate level of fluid is 20-25. My midwife suggested that the periontologist will probably want to induce labor so I do not take on any more fluid and my uterus becomes fully distended (which could create early onset of labor, hemorrhaging, prolapsed umbilical cord, etc). I walked out of that meeting shaken, disturbed and holding down hysteria.

My dream of a home birth just died. I so desired a simple, meditative, soulful experience in this rite of passage. Now, it seems the exact opposite was to be my reality; high risk, invasive, patriarchal, fear-based medicine. I was mourning my dream and steeling myself for my new reality. Spent a great deal of time muttering prayer and on the internet exploring polyhydramnios (excessive amniotic fluid) and its studied outcomes. I feared sitting down with a doctor that gave me an 'all doom & gloom' scenario.

I am pleased to report that was not my experience, at all. In my meeting with Dr. Goreberg, he explained that he does not have worry regarding the 'obstetrics' (i.e. me giving birth). His observations were that despite my ginormous belly, I was very healthy with no obvious physical limitations that would prevent me from a natural, vaginal delivery His lack of anxiety did great good in restoring confidence in my body. He was respectful of my desired experience as well as informative and caring, as were all the folks I came in contact with today at Swedish Perinatal. I will be seeing them quite often until the onset of labor, twice weekly appointments.

50% of the time, they don't know why certain women go 'poly' (polyhydramnios). The other 50% is broken down into factors of diabetes (not me) or chromosomal complication (this is where they think I fit in). If you are familiar with previous posts, you know that I decided to move forward with this pregnancy although I was 'screened' at a 50/50 chance of giving birth to a child with chromosomal challenges.One of those challenges for a fetus is known as esophagheal artesia. This is when the esophagous does not fully form and creates a blockage to the stomach. What happens is that the baby can not deposit amniotic fluid in its stomach by swallowing. So, instead of a system of swallow and urinate, the baby just keeps urinating and the fluid level rises.  They really can not detect this before birth. Ultrasound may indicate if there is amniotic fluid in the stomach and they could not recognize any fluid deposited with my ultrasound. However, they also stated that they could not get a really good view because  I had so much fluid. Dr. Goreberg also made it a point to say that this is what 'may' be the cause. It just as well may not. I was put at ease by his non-alarming dialogue and encouraged by his low key demeanor.

If esophagheal artesia is the cause of the fluid volume, baby Bean would be taken to surgery after delivery for repair of the blockage. This breaks my heart. I know I should not focus on this outcome and I am trying to steer my thoughts in a more positive direction. I will continue to pray and meditate on the best possible outcome for baby and me. As I was merchandising the greeting cards at work today, one fell to the floor. I picked it up and read the message "Miracle shall follow miracle and wonders shall never cease". Amen.

Falling Forward

I took a scary spill yesterday. As I finished my work day and strolled the sidewalk path to my car, I stumbled on uneven pavement and felt momentum tipping me forward. I thought for sure I had was going to balance myself upright but exhaustion and inertia pitched me parallel. I hit the pavement with my elbow, knee and the right side of my belly.

My intial mili-moment reaction was fear. Not fear for me, of course. But, for my baby, as I felt his/her movement after the impact and than nothing. I spent seconds processing what to do next when a car pulled up beside me and soon the driver was at my right side asking me if I was ok. The next second another individual appeared in my line of sight and asked who they could contact. I than felt another person to my right slipping a scarf under my head to cushion it from the cold, wet pavement. I began sobbing. I was overwhelmed with the immediacy of the care and what to do next. I asked them to retrieve my phone from my bag and would someone please go to PCC and ask for the store director, Jennifer. As I dialed the number to my midwife, caring hands touched me, voices reassured me.

The receptionist at the office answered and I quickly explained to her to have one of the midwives contact me. Jennifer showed at that point and I handed the phone to her and asked someone to help me roll onto my side as laying too long on your back can cut off blood supply to the placenta. A voice kept telling me to stay calm and breathe slowly as I was ragged  crying with great gulps of intensity. I did not know what to do. I was scared at how this would all turn out. I had to make decisions and I could not follow the logic of my own thoughts. I continued to listen to the soothing sounds of comfort and soon was breathing more even and had backed down from my hysteria. "Do you want me to phone an ambulance"? No, I responded, I wanted to know my midwife's advice. However, the seconds kept ticking away and my panic started to rise again. Yes, I decided, call the ambulance.

I heard the siren's wail and registered with a surreal acceptance that that sound was for me and not the distraction, abstraction of a city's soundtrack. I heard it come closer and closer and as the crescendo rose in volume, I became calmer knowing that medical attention was very close at hand. Interesting to find peace in in a sound that usually creates tension. The EMT's took my vitals (my blood pressure was normal) and asked a number of questions to determine the extent of the damage. I asked if they could listen to the baby's heartbeat and that was not an option. They explained to me that the concern is that the placenta may have ruptured and the only way to determine that was with an ultrasound. 

At this point, my midwife was on the phone and she talked me through the options. I decided to go to her office and she would perform an anti-stress test to determine the baby's health (strapping a monitor on the belly to measure heartbeat in relation to movement). My boss, Jennifer offered to drive me all the way across town in rush hour traffic to my midwife's office.

The baby's heartbeat was solid and he/she would not stop moving, all good signs that point to a vibrant baby. My midwife instructed me to go home, take a warm bath to help my body deal with the trauma. If I happened to notice any blood at all, I was to call her immediately and meet her at the hospital. I asked her to clarify 'what' hospital as I would be driving myself. Jennifer chimed in that she would be willing to stay at my home tonight just in case of complications and I needed assistance. She bought my chinese take out and we sat on the couch and had easy conversation until we both yawned and ached for bed.

This scary occurrence has me so emotional, I have spent the day consistently on the verge of tears. I am so grateful and blessed for the assistance of strangers, EMT, Jennifer and my midwife. Even Hank, my faithful feline companion, has spent the last 12 hours cuddling close. All these angels...all these angels remind me that I am not in this alone. Thank you. Thank you all for your support and love over these 8 months. Your caring has meant the world to me and Bean. We are so fortunate and blessed by all of you.

Movin' & Groovin'

 

  Bean has been so very active in the last 48 hours. While there is still room to move, this baby is really getting his/her groove on. It serves as my entertainment, plopping on the couch, feet perched on the coffee table, belly exposed to take in the undulations, ripples and rolls of my (why do I say my, this is not 'my' body at all, anymore!) abdomen. Hank's participation is perfunctory. He sits nearby because he always needs to be in close proximity to me yet he seems utterly bored with the squeals of admiration and fasciantion.

  This Friday is the marker for entering the 3rd trimester and yes, the nesting phase has begun. Yet, the promised wild whirlwind of tasmanian energy has not hit? Most of my efforts are taking place on my days off. I am absolutely enervated after work. I have just enough gumption to make the necessary high protein dinner (honestly, I am getting really tired of meat at every meal, so much mastication...perhaps that's where I am using up precious energy stores?). Next, I plop on the couch to watch the Bean Show if he/she is in performance mode. It not, I settle for  Mad Men. In bed by 9 pm. It's a simple little life we have here.

A Wee Rant

Had such a disjointed week, never did feel the ease, sense a moment of calm or take the time to let out a heavy sigh.
So, to decide to take myself to dinner last night at one of fave local haunts was to be a treat, soothe my jangled nerves, delight my taste buds without the chore of cleanup. Of course, true to this week's theme, I bellied up to the bar (my preferred seating choice when dining alone, don't worry, not the start of a wine-soaked bender) and ended up sitting next to a gentleman who wanted to talk, converse, share. Could have been a nice experience if his chosen topics were not totally one-sided & specifically chosen by him to serve as a pulpit for his world views. Jeez. According to him, everything is wrong with the world, specifically the United Sates and its political leadership (or lack thereof). Not saying that he did not make some salient points in his 15 minutes of rant. However, at some point, don't you just look in the mirror and know? Know that you have to be part of the solution. That somehow, someway, what good does it do to just sit & bitch & moan to a stranger? I asked him what he was doing to be part of the solution. He stared at me dumbfounded. "You know, you are a leader, also? You are a leader in your community, amongst your family, your friends, your work colleagues. How are you displaying your values, your sense of fairness, your sincerity, your honesty, your integrity", I asked? Silence. He paid his bill and left. I picked up my primer, "Attached at the Heart, How to Raise Compassionate Children" and enjoyed the rest of my sandwich, in silence. Breathe in, breathe out, big sigh.

50/50?

I am not really sure how to write this post. I usually have an idea of how to organize my thoughts before I begin. Not this time. I think I am still in the throes of trying to process myself. Please be patient as I ramble...

Last week I received an email from my midwife with the results of my blood screening for birth defects. Blood screening is not a diagnostic test. It calls out probabilities based on imputed data. In this case, the data utilized were my blood hormone levels and my age. Even before testing, because of my age, the probability of giving birth to a child with a birth defect is 1 in 16 (for Down's syndrome). The high risk marker is set at 1 in 250. My results spoke of a probability of 1 in 2. 

Although it was 9:30 at night when I was rocked by the email, I immediately phoned her. This news was just too disconcerting for me to sleep on without some back/forth dialogue on how to process and proceed. She talked to me about the options; intensive ultrasound to identify visual markers for birth defects (still a probability device) or amniocentesis. Amniocentesis provides a 99% accurate diagnostic of birth defects, namely Down's syndrome. I have been anti-amnio from the beginning of this pregnancy. Partly because of the risk of spontaneous abortion (stats put it at anywhere from a 1 in 400 to a 1 in 1000 risk) and mostly because of my own spiritual beliefs regarding my pregnancy.

For the past 10 years of my life I have been struggling with purpose, what is mine, why am I here and what do I serve? When I found out I was pregnant, I pondered, processed and realized that for the past 15 years I had been sublimating my real and true desire for family. This denial has led me through and to experimenting with ideas and activities that were not ultimately fulfilling (my purpose), although they did fuel my growth. It led me to the understanding that my raison d’être did not have its roots in a career path or vocation. Pregnancy, this child, possessed the metaphysical key. It turned perfectly in the latch and the universe opened wide. "We will support you in this, we are here for you, you are ready to for this, this is your destiny" were the messages I received not only from my inner knowing but from my friends.  

I chose to move forward with the non-invasive, no risk to the baby, intensive ultrasound to identify markers for Down's syndrome. These markers are; measurement of the nucal fold (thickness of baby's skin at the back of the neck), length of arms, length of legs, heart defects, bright spot on heart, condition of kidneys, position of eyes, position of ears, facial profile, water accumulation around certain areas of the fetus.

At only 16 weeks pregnant, this was my 3rd ultrasound. The 1^st was to determine if the pregnancy was ectopic because of spotting and ovary pain at the 5 week mark. The 2^nd was to do a measurement of the nucal fold at the beginning of this screening process. The 2nd ultrasound was such an amazing experience as I saw my baby move and not just once but as if he were dancing to a universal rhythm. The technician handed me Kleenex to dry my eyes as I watched, transfixed, awash in wonder and awe.

This intensive ultrasound was a very long and tedious technical experience; lots of measurements, not much focus on the whole fetus. I did see the baby bring both thumbs to his mouth which made me giggle. And, the technician managed to snap a shot of the baby waving.

Next up was to meet with a genetic counselor. When I phoned the offices to make the appointment, my intention was to utilize the services for ultrasound only. I was not interested in genetic counseling. It just sounded so ominous to me. However, the receptionist told me that the genetic counselor would be able to immediately analyze the results of the test. Immediacy very much appealed to me as my nerves were taut. My happy pregnancy high had deteriorated into a mosh pit of panic and worry.

The first 10 minutes of the meeting went well. She explained the results of my blood tests and the hormone levels. It provided me an understanding of why the results place me in the 1 out of 2 category. However, she could not tell me exactly how my age calculated into the formula and why they made the calculation with my age as 46 when the baby was conceived when I was 45 (chromosomal abnormalities would have occurred at conception, not birth). However, she did say those women who have these hormone levels have also carried babies to term that were born without chromosomal abnormalities.

She than discussed the results of the ultrasound. The big one, nucal fold, normal. Heart defects, none. Kidney defects, none. Water level, fine. Facial profile, fine. The baby was not yet developed enough for them to determine eye or ear position. The marker that was askew? Arm length. It measured at .90 and the marker’s beginning point is .90. Leg length was measured at .89 with the marker’s beginning at .91. Apparently, arm length is a bigger indicator than leg length.

Whew, I am thinking. That’s it? Just arm length? That’s very promising news. However, the genetic counselor gave me the impression she did not see the same promise. She droned on about having 2-3 more ultrasounds, amniocentesis and doing this all in the next 2-3 weeks because if I wanted to change my ‘birth plan’ (read, terminate the pregnancy) I needed to act before the 24 week mark, the legal limit of gestation to terminate pregnancy in the state of Washington (as I was informed by the genetic counselor). I told her that the info I received today was ambiguous and did not point to any more action on my part. She wondered if I would be able to sustain the pressure of not knowing and told me the stress would take its toll.

Oh, as the meeting was closing, she remembered these last points to leave me with; my hormone levels indicated there was a chance that I would not carry to term, suffer from hypertension, and blah, blah, blah. I spoke with my midwife later that evening and she also saw the results as promising. I told her that I felt as if I was being sold ‘something’, a strong persuasion for more western medicine testing and analytical machination. Her opinion was that genetic counselors are biased towards testing and termination. Wow. So, my instinct was accurate about meeting with a genetic counselor.

This is a lesson for me in honoring my instincts, in accessing my knowing. I know that carrying this baby to term is the RIGHT choice for me. As a wise woman told me very early in this pregnancy, “this child has medicine for you and you have medicine for this child”. I duly intend to carry out my part of the plan.

The Body Snatcher

A softball? Really? So soon.

I just read that at 15 weeks the baby is now the size of a softball. From a kidney bean to a softball in just a few short weeks. This exponential human making project is amazing! Such a grand investment on return, tangibility by the ton load.

I am truly in awe of every single nuance of this beautiful creative process. Listen, declaring the most gargantuan of understatements, I know I am not the 1st woman who has ever experienced making a human inside her body. However, it is happening to me. The me who had given up on ever joining this club many years ago. So, every burp, every flutter, every miniscule nudge of the projectory of my abdomen, every sip of water 'cause of my unquenchable thirst, every bathroom trip in the middle of the night, every ache, pain, push, pull is nothing less than a freakin' miracle to me. I could weep 24/7 at the sheer joy that invades every cell of my being. I love being pregnant.

The most amusing aspect for me is the most tangible. I look in the mirror every morning at waking, rub my belly and say good morning to baby. Except the woman who stares back at me is a stranger. After 45 years of seeing my naked body, this naked body is unrecognizable. And, the glorious thing is that it will grow every day and every day I am forced to see a new version of me. How freakin' beautiful is that?

Kettle, Tim's or Terra, but no Lays

It's official! I am 2nd trimester & relishing every moment of my body no longer being my body but a conduit for outstanding creation. Also means that I can breathe a sigh of relief 'cause the 'danger days' are behind me. Well meaning advice from baby sites & baby books tell me I can now share the news with the world. Oops, I hit that marker many, many weeks ago.
My latest and not so greatest craving is potato chips; greasy, salty, crunchy, thin crisps of fried potatoes. Yummy. Maybe it's the salt my body is craving? Maybe its a substitute for the gin & tonic I really covet? Who knows but I think I got my fill yesterday at a family picnic. Ready to discover my next culinary can't live without moment.

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