Sunday, February 16, 2014

Thank God I'm not doing this alone

Me: I think I've hit a wall.
B: You know what that wall is called?  Children.
Me: No, we can't call it that, because then I'm hitting the children!

I've been pretty chipper about how I don't enjoy middle-of-the-night newborn feedings, but I'm still myself during the day.  Well... that ended on Saturday.  I haven't been the nicest wife or mom.  I've done a lot of apologizing.  I did get a nap today and feel much more like myself.  But Beetle is not a sleeper, at least not when he's not in our arms.  We've done that drill before, but yep, never fun.

He's been at our home almost  a week.  In many ways, he's like a fussy newborn, which is pretty much the only kind of newborn I've known, to some extent or another.  At the same time, there are differences from NAS.  He almost never seems to totally relax.  Even sleeping in my arms, he startles as soon as I stand up.  He may settle back down, but he's always startling and fidgeting.  He even cries in his sleep, not enough to wake him, but after he's done it 20 times in a row, I feel bad and pick him up.  Or I'm tired and just want to hear less crying.  I think he has some tummy troubles, too.  He doesn't seem to really enjoy and relax for feedings like other babies, some arching of his back.  He's still sensitive to noise and light, though I think he's getting used to it more.  He did well at church this morning despite all the noise, but I had him in a wrap with his face hidden and I was standing and swaying, so I think that helped.  And thank God for church.  I almost turned back around because I had to park ridiculously far away and B was singing with choir, so I had three kids to get across a busy street and into church, two of them whining before I'd unbuckled them.  I threatened to go home if they didn't stop, but I knew I was just being a mean, tired mom.  More apologies.  So glad we went in, as singing "You are the source of my strength" lifted me out of my weariness.

Life with a drug-exposed newborn can't be entirely predicted as babies can be so different from each other.  Some have less drug exposure and don't need medication.  Some, like Beetle, need to be on methadone after discharge.  Some are sleepy.  Some scream.  Some are startlers (Beetle).  I also wonder how much the support might vary.  I also thought it would be good for potential foster parents of newborns with NAS to know that they're not just on their own!  Here is the support we have had through extra care for Beetle:
  • NICU - Beetle was ever-so-slightly pre-term, so some of his care was related to that, and I don't have previous NICU experience to distinguish.  He had a stay of 16 days, and I first knew of his existence on day 10.  I visited daily and asked the nurses for tips for soothing him and caring for him.  Some were especially helpful in explaining his scores and what to expect.  I also met with his occupational therapist for instruction on feeding, as many babies with NAS have a lazy suck and tend to dribble or spit.  The day he was discharged had lots of information from lots of people as well: the nurse went through an extensive binder of information that all babies from the NICU get, the pharmacist went over administering his methadone, the diet technician went over his formula (he gets a higher-calorie mix for now), the hospital social worker went over paperwork and some case information, and the doctor went over a lengthy report that gave me much more information about his birth and care than I got with Pterodactyl (who did not stay in the NICU).  It was plenty of support and information, and from people who had been through caring for these babies before.  At least three different hospital personnel made sure I knew to set him down to cry and walk away for a minute if I needed to, and make sure I was taking care of myself.  In a loving way, not in a "foster parent are baby shakers" kind of way.  And one nurse stood out to me as she strongly advised that B come in on the day of discharge and feed him and hear the same information.  She wanted to make sure we were a foster family, not just a foster mom with a husband, because we would both need to pitch in for a baby like Beetle.  B is a great support and loving guy, but I did need to hear that I should not just do all the hospital visit myself just because I'm more of a baby person.
  •  Weekly doctor visits - Beetle needs more visits because he is on methadone and will need to be weaned off of it.  It took some doing to find who his doctor was going to be, but it worked out that he is seeing the same doctor I saw with Pterodactyl, and I like her.  We've had one visit so far, and she will be setting up a plan to wean and keep on top of that with me.  There was a possibility that we couldn't find a doctor that would follow up on babies on methadone and he would have to go to a separate clinic for those check-ups, but thankfully we connected with this doctor.
  • Nurse home visits - I was asked by one nurse if we wanted ongoing home visits.  I had no idea, but figured why not.  I came to find out that he qualified for having NAS, and his Medicaid covers it.  So now I have weekly visits from a nurse to be an extra set of eyes to check on how Beetle's doing as we wean him off methadone.  AND I don't have to leave my house.
  • Additional training - This goes back to January, but we attended a training session to learn more about drug-exposed infants, taught by a nurse who is also a foster parent.  I knew some of the information from foster blogs or forums already, but it was good just to hear what to expect.  It has also helped me refute myths for the closest friends and family that I tell about Beetle having NAS.  No, not all moms who have drug-addicted infants make poor decisions during pregnancy.  Some are on methadone under supervision by a doctor because that's safer than trying to quit.  No, the long-term effects are probably not as scary as you might have read if the environment mediates them.
  • Friends and family - It cannot be underestimated how much offered help means to me.  I even took some clothes a friend was getting rid of that I didn't desperately need because I was just felt so encouraged to have help offered.  One friend took Rhinoceros overnight to ease the load.  Another took him while we had that long afternoon at the hospital while he was discharged.  I went to a foster care support group mainly to use their childcare.  And, of course, it helps just to have listening ears and prayers.
So, we're not on our own with Beetle.  I'm careful to take a lot of notes.  His parents expressed their concern about how he was doing, and I feel a great responsibility to do this the best I can, to keep this little guy from too much pain, yet still get him weaned off methadone.  I'm still waiting to hear if he is going to move to his grandma or aunt.  My hunch?  They will let us do the legwork on his withdrawal process while there are still twice weekly appointments, then move him.  I'm not upset about this, just learning to understand that when things don't have to move fast, they often don't.  We'll see if I'm right.

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