Sunday, June 12, 2016

Headed on the Tongue Tie Awareness War-path

Well, I've reached my limit.

Any cup will eventually overflow if enough drips into it; I think I'm at the overflow point, and it's time to channel the runoff.  I've watched enough suffering of both babies and moms, I've heard enough nonsense and I've experienced enough exhaustion.  It's high time we had consistent and consistently simple care for tongue ties in our nation (and the world).  Let me quickly tell my story, summarize the current state of affairs, and outline my plan.

My story?  I've had three babies, all tongue-tied, and my own self, who is tongue tied.  With my first, my sweet Eowyn, I pushed through painful breastfeeding, reflux, and a baby who did not enjoy nursing for 5 months, because I didn't know about ties and everyone told me nursing always hurt at first anyway.  By 5 months her mouth had grown enough that my pain and hers went away, and we thought all was well.  However, her tie was still there, and though we had it revised at age 3 she is still in speech therapy at age 6.5 for a lisp caused by a tongue that sits too far forward in her mouth.  (Another symptom for her has been biting of her tongue repeatedly while eating; we're talking almost daily for her whole life.)

Patrick, whom I've loved nursing to chubby roundness
Second baby, Liam three months of heartache, exhaustion, mental torture and more to find anyone who acknowledged that something was not right in my beautiful baby's mouth.  I wasn't a hypochnodriac mom; my son projectile vomited, turned blue-white around the mouth, and actively fought nursing and bottle-feeding alike, starving himself all day and only feeding in his sleep with a complete plateau of weight gain, not to mention breastfeeding pain.  I was a sleep-deprived zombie going from one specialist to the next, until finally Dr. Kotlow revised my son's lip and posterior tongue ties and we began to improve.  We still needed several months of feeding therapy, cranionsacral therapy, chiropractic care and years of sensory play therapy along with a second revision of his tongue.  By two, all symptoms were finally gone including Liam's sensory aversions, reflux, laryngomalacia, feeding difficulties, texture issues, and uncomfortable latch.  (Full story here.)

Third baby, Patrick, had the most obvious piston tie and a lip tie so tight his upper mandible was (and is) notched.  We had his addressed at three days old, again at 6 weeks, and a third time under the tongue at 3 months.  It was three months of stretches, massive nutritional supplementation for me (for him), many therapies, and body work BUT by 5 months we were done with everything, settled into comfortable, easy nursing with a baby who never once stopped gaining (he's still in the 90th percentile for everything at almost 8 months), is happy and easy going.  Sure, it was an intense road up front but it was DONE, totally done, by 5 months.

Three kids-- first still dealing with tie repercussions at age 6.5; second, finished by age 2; third, finished by age 5 months.  Which would you pick?

Current state of affairs.  In my area of the country, there are two-three providers who do releases correctly in each major city.  However, NONE of them are pediatricians or primary-care providers, which is problematic for many families when it comes to paying for a release (though all of the care providers are exceedingly gracious and many will do payment plans). There are only one or two IBCLCs who are experienced with ties, and usually only a handful of SLPs (speech language pathologists, who handle feeding therapy in SC) which is far too few, especially since moms with tied babies/toddlers need a good deal of support until the tie is resolved.  So this is discouraging enough, but to add to it practices in my area who actively DISCOURAGE treatment of tongue ties, blame mothers and babies, and IBCLCs who spread misinformation regarding these issues, and you have an intolerable situation.  Honestly, it amounts to oppression and injustice.  Children are left to suffer, often for life, never knowing that their speech, dental, digestive, sleep, and respiratory issues are caused by a thin tendon being too tight in their mouth.  Many are labeled "high needs," "fussy," "colicky," and "lazy."  Moms are left to suffer and feel guilty for weaning early, bottle-feeding, or to push through difficult breast-feeding, physical pain, disrupted sleep; often they are blamed when their babies are gassy or don't gain weight.  They are told their milk quality is poor, that they must be eating things their baby doesn't like, that it's normal for nursing to hurt or for babies to eat for hours around the clock. Families either don't know treatment is possible, or its unavailable, or they are discouraged from seeking it because they are told the procedure is controversial, risky, painful, and/or with awful aftercare.  (Having gone through it a total of 8 times in our own home, at various ages, I can assure you a properly done release is NOT that bad!!  Worth the pain for sure!)

In my dream world, babies would be checked for ties at birth, at 2 days old and at 6 weeks; all OBs, midwives, family doctors and pediatricians would know how to assess tongue & lip range of motion properly and how to release in office (with laser, scalpel or scissors), or would refer to a practitioner who did (lasers are so effective and generally only dentists or ENTs will have those).  All moms would be assured that the procedure is quick, safe, and with relatively low pain & risk involved.  All IBCLCs and above mentioned care providers as well as chiropractors would know all the symptoms of a tie in a nursing dyad (baby OR mom) or a bottle-fed infant, so no one would fall through the cracks.  The procedure would be so commonplace and inexpensive that insurance wouldn't hesitate to cover it.  Lastly, many trials and studies would be going on to determine WHY we are experiencing such a spate of restricted oral tissues right now, and how to avoid them in future generations.

My plan.  I've got a fire in my bones about this.  Posting some thoughts on the Tongue Tie Babies Support Group on FB got immediate support and lots of feedback, so here is my approach:

  •  to have an online printable letter for parents to print & give to their care providers, based on existing letters by Dr. L Kotlow (here) and Dr. B Ghaheri (here).
  •  to send letters to every care provider in Greenville (my area) personally 
  •  to personally & publicly call out local practices that have blocked treatment of TT babies (through open letters posted here and also mailed 
  •  to have an online petition to make three proper exams for ties a standard of care for every baby (at birth, at two days and at 6 weeks) - to send info to Good Morning America with the hope of having Dr Kotlow or Dr Notestine or Dr Ghaheri or Dr Newman to speak on the ease of releasing and the need for it
Harry Potter fans, this is my S.P.E.W. 

Onward!

Friday, May 13, 2016

Patrick's Birth Story

This version of Patrick's birth story has been 6 months in the making.  I tried to write this the week after his birth and just couldnt condense it down.  Everything was too vivid, too fresh.  It was hard to step back and get a summary; there were too many details for me to articulate a big picture. About 4 months ago I wrote a thorough birth story, but it's taken me this long to condense everything into something blog-able.  My friend Brooke gave me pictures from the birth, so now I just want it finished.  All that to say here is Patricks birth as I remember it:

For six weeks now, contractions had come, stayed a while, and gone, often leaving me breathless and sore.  My feelings had run the gamut of hope, confusion, frustration, anger, and finally, acceptance.  We had weathered a flea invasion, a horrible stomach virus and colds in my kids.  40 weeks had come and gone, along with them several people who had hoped to be a part of my birth team from out of townmy sister Nicole, my dear friend Amy, fellow home-birth fan Leah.  I had prayed so long that whomever needed to be at my birth would be there, and with them gone there was nothing left to do but trust and wait.  I dont do waiting well I have a hard time not doing.  At 40 weeks I went for an acupuncture session hoping to balance whatever in my body was causing such consistent non-progressive labor.  On the way to the session I had such strong continuous contractions that I had trouble breathing deeply.  As soon as Katie inserted the needles into my legs, my body forcibly relaxed and the contractions stopped.  Ahhhhh such relief.  A week and a day later (Saturday) I began to have strong contractions again.  They continued off and on into the next day, sometimes requiring me to practice breathing deeply and focus, but any time I tried to time them they spaced out and stopped.  As had become usual the past few weeks, I sent my lesson plans for the class I taught at my daughters co-op to another mom who would step in for me if Patrick came on a Monday.  Sunday was my cousins birthday and we hadnt RSVPed to his party because I just wasnt sure what would happen or what Id be able to handle.  But at 6 oclock I felt ok so we headed over.  We enjoyed the party and my cousin joked that he would really like a birthday buddy.

We got home, got the kids to bed and I settled to try and sleep around midnight.  Of course as soon as it was no longer technically my cousins birthday, my contractions began to regulate.  Every 10 minutes they came all night long.  Id get up and walk or sit on my birthing ball or rock in my rocker, and they would space out and ease up Id get back into bed and they would be too intense to sleep through and they would last much longer.  I finally got into a hot Epsom bath around 4 and by 5 felt like I could sleep.  I texted my co-op sub and said to plan on teaching because I would be at best running on 3 hours of sleep and my body was plain wore out.  My mom volunteered to take the kids to co-op for the morning so I could try and rest.  I texted my midwife, ElizabethRandolph, and asked what she thought I should do.  The only difference I had this morning as opposed to every other morning lately was bloody show.  She offered to bring over some cottonroot bark tincture, saying she thought it might help my body get over the hump and kick into full-blown labor.  She also recommended I go to the chiropractor for an adjustment; often the  round ligaments that anchor/support the uterus will get uneven and impede labor.  So she brought the tincture by and I headed to the chiropractors.  Elizabeth volunteered to come over around 10 pm to hang out and be near just in case something happened tonight.  I liked the idea.  So I got adjusted right around 10:30 and started the herbs around noon.  I puttered around tidying up and taking my tincture every 15 minutes as Id been instructed, finishing w a big ol dose of castor oil at 3.  (Its really not so badjust hold your nose hard and cut it w juice.)  Then I took a nap.  As I woke up 2 hours later my kiddos were coming home for dinner.  I felt refreshed after my nap, but no real contractions and as far as I could tell, no effects at all from the castor oil.  My one bit of hope was that I was still having bloody show all day.  I sat up on my birth ball and started getting the scoop on the day from Eowyn (my 6 year old daughter) and wow!  A good pressure wave hit!  Big deal, those hit all the time.  But then another came, and before it had eased up another and then a third.  I stood up, leaning on Ryans dresser (its about shoulder-height) and moaned through them, and as soon as I got a bit of a break, fumbled for my phone as I told Eowyn tell Daddy I need him.  I texted Elizabeth these are relentless- can I get in the shower?  She said of course.  I didnt know what was going on, but needed some kind of relief and hoped the hot water would help.  I turned the water on as hot as I could and got in, contractions still hitting hard and staying hard.  I finally got a bit of a break as I knelt in the shower with the water on my back.  I texted my mom to come back and help feed the kids dinner so Ryan could be with me, and I told Elizabeth what was happening.  I said I didnt know if anything was different but that I just couldnt stand the thought of not getting in water now and really wanted to set up the birth tub.  She said I will be in my car in 3 minutes and that was very comforting to me.  This was around 5:45 pm.

By the time she came pressure waves had spaced to a more manageable distance apart.  I never timed them, and honestly I dont know what told me that this set of contractions was different than any of the previousinstinct?  Maybe it was just the likelihood of timing (41 weeks 3 days gestation, same as Liams birthday), maybe it was because Id taken herbs, maybe it was just wishful thinking, but I called my friend Megan, who was functioning as a birth hospitality coordinator.  My Hypnobabies instructor Julie had mentioned that during a home birth it was helpful to have a member of the birth team who knew where everything was and could make sure every guest was comfortable, so that the mom wouldnt be trying to play hostess when she should be birthing.  So Id asked Megan to do that.  She had friends & family members phone numbers to keep in the loop, and was responsible for calling in my non-medical birth team members:  Wendy, a dear friend & also an RN; Brooke, who would be taking pictures; and Christin, an aquaintance who was interested in exploring midwifery as a career but had yet to see a birth.  Elizabeth would come and determine whether or not this was it and would call her apprentice, Sarah. 

I sat upstairs on my bed cross legged, relaxing between contractions and trying to stay loose through them.  I walked around and slow danced with Ryan.  He started filling the birth tub.  I commented on how plastic-y the tub liner smelled and so he opened our bathroom windowI didnt realize it but this window stayed open throughout the birth, allowing one of our neighbors to hear our baby crying right after birth, and to remark I think they had that baby just now to his wife.  Time began to do that funny thing it does in labor; everything seems to stand still and rush ahead at once.  I could have been laboring for hours or minutes, contractions could have been 5 or 10 or 2 minutes apart.  They still werent regular and seemed to vary in intensity.  I remember Elizabeth arriving and that being such a relief.  One by one friends arrived and the birth scene I had envisioned began to be enacted, both fun and relaxing to me:  a birth tub full of inviting hot water; low lights, Jack o lanters with candles, the letters B-A-B-Y and even a Harry Potter poster.  We talked in hushed voices or else laughed.  Elizabeth & Sarah began unfolding the various birth materials, double-making my bed with sheets, a plastic sheet, and another set of sheets, arranging Doppler and gloves it was all done so quietly, so gently, so quickly that it was almost like magic.  Someone set out our babys first outfit:  the tiniest little cloth diaper and a Gryffindor Quidditch jersey.  It was dark outside and glowing & warm insidejust like Id always envisioned for this babys birth.

Around 8:50 I got in the tubahhhhh. such a relief.  I still felt like I was in early active labor; purposeful but cheerful and in good spirits between contractions.  Our bedroom has its own bathroom & a boudoir large enough for the birth tub.  The boudoir opens onto the master bedroom with double French doors.  We had one closed so it felt very private even with a half dozen people in the master bedroom. The only people in around the tub were Ryan and one of the midwives, and Eowyn as she wanted.  She came in & out and I talked to her between contractions.  Sometimes I cried during a contraction, not out of pain, just because the release felt good.  Ryan applied counter pressure and reminded me to relax.  I had three playlists ready for labor:  my Hypnobabies tracks, a Labor Mix, and Harry Potter & the Prisoner of Azkaban.  I had imagined I would want HP3 because it had been my Hypnosis cue all throughout pregnancy, helping me to relax and usually go to sleep.  But just in case it didnt feel right in the moment, I had the other two playlists, and to my surprise, I found myself wanting the playlist of songs.  So we started that.  I felt strong and happy; unafraid.  Around 9:40 I started getting the urge to push and let myself push with the contractions.  I could tell the midwives thought this might be it, maybe the prodromal labor had done all the work and this would be a fast birth!  But something felt off to me.  Babys head didnt feel anywhere near the perineum and I just didnt feel like Id gone through transformation/transition.  After about 30 minutes and a few pushes, squatting in the water, holding onto Sarahs hands as Ryan applied counter pressure to my hips, Elizabeth asked to check me to make sure I didnt have a cervical lip.  I agreed.  She immediately told me I wasnt complete.  My doula brain knew that this meant at best pushing would tire me out, and at worst would cause swelling.  So, I had to try to not push.  Easier said then done.  Fitting though that the hardest part of this labor would be so like the hardest part of my pregnancy:  waiting without doing.  This was about 10:20.

Eowyns birth was long and exhausting; she was malpositioned and didnt descend for hours. I remember saying Im going to die, which I never actually feared just the physical intensity shocked me.  Liams birth was so much quieter and more peaceful, quicker too.  I remember floating in the tub and contractions coming and leaving, and me roaring through pushing but otherwise being fairly quiet.  At one point my music had ended and I had just finished laboring in silence.  I had expected this birth to be even more calm, especially after going through Hypnobabies and having even more tools to relax, and with Eowyn in the room.  The timing was similar; labor picking up all evening and baby coming in the night.  If anything I felt even more comfortable and calm, surrounded by friends in my own bedroom.  But this, this not doing what my nerves were screaming to do (PUSH) was new.  Physically speaking it is the hardest thing I have ever done.

I flipped over onto my back to try and bring my big old belly back over my posterior cervix and get it to dilate.  (I was still only 4ish cm, which was just a tiny bit more than what I had been for the past week.  Thankfully Elizabeth didnt tell me this and I didnt want to know.)  With every pressure wave I felt like I was fighting myself to not push, and it felt like I would tear in two.  I wondered how in the world I would finish this labor. It seemed like I really would be pregnant forevernot just having "false labor" for weeks but now never dilating.  I told Elizabeth that this would never work and to please just take me to the hospital for a c-section.  Of course as soon as the wave had retreated I retracted that, and they assured me we werent going anywhere.  I absolutely could not get into self-hypnosisnot pushing required me to stay very present in my body and the whole point of hypnosis (as I understand it) is to turn over your body to your auto-pilot so you can go elsewhere.  Desperate to find something to focus on, I started singing along with the playlist Come, Thou Fount of every blessing; tune my heart to sing thy praise; Streams of mercy, never ceasing call for songs of loudest praise…” singing harmony kept my mind off of the pain, gave me something to mentally grab.  The next song was Andrew Petersons Labor of Love, and I remembered little Mary laboring in a barn, I remembered the War we women have always waged against the Serpentfighting to bring forth our children, fighting to bring them into light and love and raise them to battle his lies.  As in my other births, I felt so connected to every woman who has brought forth children all over the world.  I also felt my own weakness and need for Grace Give us faith to be strong; give us strength to be faithful, cause life is not long but its hard!  So for the next half-hour, I gave the concert I never expected to give:  singing as my body brought my child into the light.  I'm not sure what my college voice teacher would say about my technique, but I have never had a more worthy goal.  Andrew Peterson, Sara Groves, Fernando Ortega, Sandra McCracken, these were my partners; old friends I was glad to have to lean on.  Physically, my birth team was so supportive, keeping the water in the tub hot (I had no idea how comforting that would be!), holding my hands, offering me water and coconut water, praying aloud for me, and even singing with me at one point (my favorite memory!).  Eowyn was amazing, coming in and out to pat my back, rub my head and tell me Mommy, you are so strong.  You are doing such a great job.  You can do it, you are doing a wonderful thing.  I was so impressed by her.  Liam was supposed to go over to my aunts house but ended up staying home, mostly out of the room with my mom. 

After about half an hour, around 10:45, looking back I can tell something shifted.  In the moment it just felt like what little control I had was slipping away.  My mental endurance and physical endurance were wearing very thin and I remember thinking this is why women get epidurals.  If I was in a hospital I would ask for one.  Im at my wall.  I think I will go insane if I have to do this much longer.  I had one contraction where I really could not cope.  I knew I was crying outit was so hard to not push-- and I begged them to make sure Eowyn was out of the room, I didnt want her to be frightened.  They told me she already was out (she was sad for me so she left to cry a little, be comforted by Megan and my mom, and she would come back when she was ready).  I told Elizabeth something had to change.  She asked me if anything felt different, all I could manage was I dont even know.  You just have to tell me what to do.  Please, tell me what to do. I remember so clearly looking into her eyes and desperately needing someone else to think instead of trying to do it.  I have always been told and taught others that women remember parts of their birth in startling detail, specifically how they felt and how they were treated.  Its totally true.  This is one of those mental snapshots.

Elizabeth suggested I get out and try the rotisserie”—a series of positions that can help a baby turn or shift as they need so they can descend.  Id start out on my left side on the bed.  So I got up, stepped out of the tub, and immediately felt another wave building and knew I would have to push with it, no matter how hard I resisted.  Im going to pee on the floor! I shouted to the room at large.  Sarah threw some towels down and sure enough, I peed. :) I knew Eowyn would be appalled and I found this funny.  Ryan helped me onto the bed, and I lay my head down in his lap, holding his hands.  Sarah helped me bend my right leg and applied counter pressure to my hips & back which felt SO right.  Another wave began to build and I again knew Id be pushing whether I wanted to or not.  So much pressure then POP, my water broke everywhere (10:57).  I realized that I was completely dilated at the same time as Elizabeth said the sweet beautiful words Christina, you can push.  I already am!!  To finally be able to work WITH the contractions was freeing, but these were no joke.  I think my volume went down as I alternately silently pushed and loudly ahhhh-ed, but I was amazed again at how long I could push and how much energy I had.  A long, hard push and I felt my old frenemy Mr. Ring of Fire.  I did my best to let it be, to let his head stretch whatever needed to stretch, to rest and breathe and relax, but in my head I was shouting Lord, PLEASE send another contraction, PLEASE!!!  Another pressure wavestretching, burning, fire, a hundred thousand seconds long and IS THAT HEAD OUT YET?  Youre doing so good, Christina!  You can do it! Your babys head is out! Oh look at this hair! Oh my goodness, your baby is already breathing!  Can you feel the baby breathing? (my mental response:  ARE YOU INSANE?? ALL I FEEL IS FIRE!!!) And a very calm but serious Christina, with this next contraction I want you to push as hard as you can. from the midwife.  So I reached deep inside and prayed so hard please oh please oh please help me get him out let this be the last one please let the baby be ok please help me! and I felt the sweet relief of my babys body birthed through my own.  Suddenly the burning was gone and hands were passing me a warm slippery bundle, crying softly.  Oh, thank you! Thank you Jesus!  I was so relieved that it was over, finally, that the baby was ok and here in my arms.  I tried to see or feel babys gender and couldnt tell.  Ryan checked and announced its a boy!  At 11:03 pm, just 6 minutes after my water broke, Patrick Ryan was laid on my chest.  I had dilated 6 cm in only 45 minutes after 6 weeks of prodromal labor.
My body was shaking and shaking and my uterus wasn’t about to stop contracting, not after doing it for so long.  I really wanted to bond with and enjoy my baby, but I could hardly hold him, especially not laying diagonally across the bed like I was.  He was crying, I noticed, more so than his brother who didn’t fuss much at all.  (It turns out he had a subluxation in his neck, probably a combination of the way he was delivered and his tongue tie- when our chiropractor came and adjusted him the next day he was noticeably happier.)  He had hair, he was big like his brother, slippery, squirmy.  I asked for help getting into a less precarious position and Eowyn came over to check out her new brother.  Later on she would say watching him “come out” was her favorite part of the whole birth, and Wendy said her face was one of complete awe and amazement.  I just wanted the placenta to come out, I can’t explain why… it just felt heavy and irritating inside.  I also wanted the contractions to STOP—I knew they were working to expel the placenta and just wanted it over.  It seemed to take forever for the cord to stop pulsing and be clamped & cut, and longer still for the placenta to detach and follow its occupant into the air.  It was a big old healthy one, 5 lbs on its own!
I finally felt able to enjoy my baby after the placenta delivered.  Liam came in and was ecstatic to meet his brother.  “I heard you say ‘I can’t do it!,’ Mommy!  What were you talking about?  Why you say that?” “Oh I was working hard having your brother.” “Well, you did it, Mom.”  Yes I did, didn’t I?  :) 

I asked for some butterbeer and the chocolate chip pumpkin muffins to munch on, and that was so fun.  The kids had been longing for those muffins for weeks!!  The best part about home birth (besides not having to drive during labor) is the after-party!  I was amazed at how quickly the birth team cleaned and re-ordered my home.  By the time I was showered (I saw my underbelly for the first time in months, haha) and back in bed the birth pool was taken down, the sheets had been changed, and everything was either in the wash or the trash.  To top it all off the midwives came back into the room dressed in Hogwarts-style black robes and pointed witches hats!  Oh I wish I had taken a picture then!!  Another quote I remember was Elizabeth “I’m sorry you missed your water birth again!  I didn’t realize you were that close!” and I laughed “Fourth time’ll be the charm!”  


Eventually we weighed the little man and he was a whopping 10 lbs 9 oz, and even more amazingly, 23.5” long.  “Christina, he is almost 2 feet long!  WHERE did you put him?” “Well didn’t you feel those legs?  They just kept going and going and going in there!  How could he NOT be massively long?”  Patrick, you set a record for the midwives as biggest baby caught to date.  I checked him for tongue tie (dang it, a super obvious one) and marveled that he wasn’t bald.  Finally my mom took the big kids to her house to sleep and Ryan & I settled into bed with our new baby.  We were both in such love with him.  Immediately after his birth I felt such sweetness, such blessing, in his coming.  I can’t describe it more than that.







in the zone