Speech Therapy

My brain is fried. I spend my days clutching Niko, apologizing for giving her this life.  I spend my sleepless nights in a seated position with my body twisted into very unnatural positions in my pathetic attempts to sooth her to sleep. I am a half lit flame right now.  A gentle breeze can blow me out.  What I crave so badly is some sort of omniscient helping hand.  Some guidance…… clear concise guidance.  I can see why some people turn to God, or Allah, or Buddha (or a rooftop with an AK-47) in times like this.   

Upon receiving this earth shattering news, I wanted to retreat into a dark place and ask “why us?”  I wanted to assign myself to solitary confinement.  Staring at one spot of a blank wall all day long sounded like a good time compared to the reality I had to face.  

Feeling so lost, I want the doctors and medical professionals to give me guidance.  I’m not looking for a miracle. I know that we can’t fix Niko.  I just want a voice of authority to tell me what to do.

In general, when you visit a doctor, he tells you what’s ailing you with terms that you can’t pronounce and prescribes treatment.  If it’s complicated, he makes a referral to a specialist.  They are supposed to know volumes more than you due to their long and expensive education.  In my case unfortunately, I do not have seasoned specialists to go to.  It’s tiring being on hyper alert all the time.  Because this disease is so rare, I research all day so that I’m more informed than the doctors.  I do my homework before each appointment to make sure that Nikola would get the most out of each specialist we see.   

Last week I met with a speech therapist.  The purpose of the appointment was to observe Niko’s feeding with the goal of improving her sucking ability and general oral motor control.

From the moment I saw this speech therapist I knew she was not going to be helpful.  She had a very quiet new agey feel about her.  Ironic for a speech therapist, her speech volume reached the same vocal frequency of a meek mouse at best.  She seemed rather shy and habitually backed into the dark dank corner of her cluttered office.

I brought about 5 different bottles with me, but she just asked me to try the Dr Brown bottle.  She observed Niko’s feeding for a short while.  She didn’t say much.  So I asked her what she was looking for.  She said she was counting the number of consecutive sucks Niko was able to do on that bottle.  This woman’s quietness could have been mistaken for a reluctance to share information.  She seemed to have a speak-only-when-spoken-to manner.  I was so frustrated because I had to keep pushing for answers.  Going to these appointments shouldn’t have to be so much work! 

So I kept asking questions.  How many sucks did she do?  How is she compared to other babies her age?  Why does she leak milk everywhere when she feeds?  Why does she scream at feedings?  She concluded that Nikola had a weak suck due to low muscle tones in her cheeks.  I kept at her.  What can I do?  Are there exercises I can do with Nikola’s jaw to develop her cheek muscles?  How should I hold her?  What bottle does she recommend?  And finally I got a real answer.  She passively suggested that I try the Haberman feeder; a special needs bottle created for babies with cleft palates and other feeding problems. 

We tried the Haberman feeder at her office.  Niko got one more suck out of this bottle over the Dr. Brown bottle.  Though she didn’t actually recommend this bottle, as she was a woman of very few words, I asked her where I could buy this bottle.  She directed me to a website.  Before leaving her office, I asked her if they sell this bottle at the lactation Center on the first floor (just to save myself the trouble and time of ordering online).  And she meekly said that they do sell them downstairs.  WTF!  This is what I mean.  Why direct me to a website when it's sold downstairs?  It’s like pulling teeth to get anything out of her.

I bought this bottle right away.  And guess what!  Niko is bottle-feeding now.  This bottle is a miracle.  It doesn’t require Niko to actually suck like other bottles.  It works by gum and tongue pressure, most similar to breastfeeding.  So I take back all my negative thoughts of quiet mouse lady.  She has offered the most useful tip of everyone we’ve seen to date.  Niko now takes the bottle (about 60 – 70ml per feeding). 

Maybe someone else can feed her eventually.  So far I’m enjoying Niko as my new appendage, but I’m looking forward to a little freedom.  I’d like to take a long walk, baby-free, one day soon.    

A couple Niko shots to keep this blog fun.