5 kilos

It had become clear that Bekah couldn't breath on her own.  She would have to be transitioned to a home ventilator.  This is a smaller version of the hospital vent.  But to use this, she had to weigh at least 5 kilos, that's just a little more than 10 lbs.  She only weighed 4 kilos and was underweight due to all the interruptions in her feeds for so many procedures.  Her milk was fortified to help fatten her up more quickly and her feedings were finally regular.

Occupational therapists began working with her to encourage her to use a bottle.  This was a challenge.  She breastfed for the first 3 weeks of life, so the bottle was foreign to her.  She hadn't had anything by mouth for half of her life and now she was being encouraged to coordinate her muscles in such a strange way.  If she didn't latch on, she was going to have to have a g-tube.  They tack the stomach to the abdominal wall poke a hole in the belly and insert a feeding tube.  This tube is held in place by a water filled balloon inside the stomach.  I hated the idea of it and held my breath anxiously during every occupational therapy session.  Sometimes I was so tense I had to leave the room.  I couldn't tell her "Come on, honey, take a sip or they're going to poke another hole in you."  The work continued daily for weeks.  Finally the therapist looks at me and says, "I feel like she's right there.  She's right on the verge and just about to latch on."  I was so excited and finally looking forward to the next session.
The next day when the therapist arrived, Bekah wasn't doing well.  Her blood oxygen saturation was
low and her heart rate was high.  She was struggling to breath.  There would be no therapy today.

Bekah's right lung had collapsed.  Days would pass before she was strong enough to try again.  Speech therapists wanted to be sure Bekah could swallow, so they performed a blue dye test.  A bit of blue food coloring is applied to a pacifier and Bekah was encouraged to suck.  Over the next 24 hours we were to watch carefully that none of the secretions we suctioned from her trach were blue.  If this is the case it would indicate that she wasn't swallowing her saliva and was instead breathing it into her lungs.  This test was passed with flying colors, or rather the lack there of.  All of her secretions were normal.

The next step was a blue dye swallow study.  She was given a bottle of milk dyed blue and the same process was to be repeated. Unfortunately, she didn't latch on and she didn't suck.  She did swallow what poured into her mouth.  Because she wouldn't suck and swallow, the final test could not be performed.  She would have had a swallow study where they give her some luminescent fluid and watch her drink it on a floroscope.  The decision was made.  She would have a g-tube placed.  She was incapable of feeding by mouth.

milk and methadone

The next few weeks were arduous.  Bekah was in full withdrawals.  Now that she didn't need to be sedated, she was off the fentanyl drip and she missed it.  I lived in Venice Beach for a while and I saw all kinds of junkies, many of whom wanted to be clean but were afraid of getting "sick."  Back then, I couldn't imagine what they meant.  I watched Bekah sweat and vomit, shake and twitch as her body begged for more of the drug.  She was given methadone through the tube in her nose that lead to her stomach.  This meant she had to wait for her body to absorb it.  I understood now why neonatal nurses were so angry when babies were born dependent on opiates like heroine.  This was no joke.  She couldn't take as much methadone as she needed to ease her symptoms because she was so sensitive to it.  If you read "code blue" of my blog you know that it makes her die.  Her heart rate would plummet to dangerous levels and he would require immediate cpr.  To help bridge her, she was given a clonidine patch.  This drug is used to lower blood pressure.  Its off-lable use is to ease agitation and is often used for psychiatric patients.  She was given ativan frequently to help.  She slept a lot.

Her feedings were finally regular.  She was on a consistent regimen of milk and methadone.  Jeffrey and I joked that this sounded like quite the Victorian elixir.  She hadn't gained the weight a healthy baby of her age could expect because she had so many gaps in her feedings over the previous weeks.  Many, many times she was deprived for food for more than 12 hours for an extubation, exam, test, or procedure.  Her body was the worse for it.

A week after her tracheostomy, I was finally able to hold her.

The child life specialist gave us a doll called a "Shadow Buddy."  It had a tracheostomy and a real trach tube.  I was so delighted to see it.  When I was small and my sister had her open-heart surgery, a child life specialist showed me our favorite doll dressed up in all the medical equipment my sister wore before I was allowed to see her.  The trach doll was warm and familiar.  We named her Tracy.  Over the next few weeks, the doll became my practice dummy when learning trach care.  I used her to practice suctioning and changing the trach and ties.  It was profoundly helpful.

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Our lungs naturally produce mucus.  We think nothing of it when we clear our throats and swallow.  When you have a trach, you can't do this.  The mucus stops in and around the trach.  You have to manually suction it out using a specially made suction catheter and suction machine.  If you don't, suffocation is imminent.  I practiced and practiced.  The first time I suctioned Bekah, the nurse was there guiding me.  Though it was a success, I still shook violently afterward.  I had penetrated a part of my baby's body that we aren't meant to touch.  The airway is sacred.  No one's lungs are accessible.  That is, unless you have a trach.

The training was diligent.  There was a sign-off sheet for both Jeffrey and me that had to be completed before Bekah could be discharged.  We had to be fully competent in caring for her trach.  We had to know how to suction, clean the stoma site, change the ties that held the trach in place, and change the trach.  Once a week, routinely, the old trach was removed and a new one was put in its place.  This means that for a moment, Bekah's airway is compromised. You have to be quick, steady, and smooth.  It took a lot of practicing with Tracy.

During this time, Bekah was given another opportunity to show if she could breath on her own.  She failed.  She had become dependent on the ventilator.