ChezPerky

I’ll write more later, but the long and the short of it is that I’m still, for the moment, OB-less.  Saw the shiny new OB today and he doesn’t know if he’s comfortable taking me on as a patient because of the complexity of care that I require.

Sigh.

So I saw the perinatologist yesterday.  I had a 3:30 appointment and I was done with the growth ultrasound by a little after 4pm.  Baby is growing perfectly – has a brain, legs, feet, hands, arms, spine, etc.  The sonographer couldn’t quite visualize the four chambers of the heart, but she said it’s a little early for that anyway.   Heartbeat was a respectable 158bpm, I think.    I didn’t get any printed pictures, but to be honest, the baby was never in a great position for a good picture anyway.  I mean, lots of good pictures of ulnas and femurs and fingers and such, but not so many that really resembled a baby and not Skelator.  I’m pretty sure I saw the “money shot” a few times, but fortunately, I’m good enough at ignoring such things that I still have no idea whether this is a boy or a girl.  I don’t want to know before delivery day.  Anyway, the important thing was that the baby is growing and so far seems to have all the anatomy in place that s/he should have at this point.  I’m pretty sure the baby was sleeping through the whole U/S – not much activity, even when the sonographer was poking my belly to try to get a reaction.

Once the U/S was done, I let the sonographer know I’d like to make sure to speak with the doctor (at the perinatologists’ office, patients don’t typically meet with the perinatologist at U/S appointments unless there’s a problem or the patient needs to ask the doctor any questions).   Dr. P. had stepped out to do an emergency cerclage removal – so I was given the option of waiting or talking to Dr. G. over the phone (he was at the other office).  I like and respect both doctors a lot, but I really wanted to see Dr. P. in person if possible, so I waited.  He got back to the office just before 5pm and then spent a solid hour talking with him (this is part of why I love him).

I told him that my other OB “fired” me and he laughed and said, “How the hell do you get *fired* by your physician??!!?”  So I explained what happened and he was pretty flabergasted.  The practice that fired me is a very well respected practice, Dr. P. works really well with them, and until recently, I loved them too.  Everybody loves them – I only know one person other than me that had any issues with that office – and that was a clashing of philosophies/personalities, not a concern about quality of medical care (this other person is… how shall I put this?  Kind of a witch).

He talked about possibly coming to a decision point about just moving me over to TPN.  I told him we’d sort of been dancing around the issue up until now and that I really just don’t know where the tipping point is – at what point do we decide enough is enough and just move to parenteral nutrition?  He said, “Unless you’re feeling better and think this is going to be gone in another couple of weeks, I think we’re there now.”  He wasn’t pushing to make the change immediately, but to definitely have it in mind as I’m trying to find a new OB (more on that later), and if I wanted to move to TPN before I get settled with a new OB, he’ll be happy to handle putting in the orders for it with the home health company.

He volunteered that he’s happy to cover me while I’m trying to get settled with a new OB.  And he gave me some recommendations for doctors to talk to.  The first one he mentioned was the doctor that I’d already set up a tentative appointment with for next Monday.  He said he’s a really good guy, excellent doctor, has the advantage (and disadvantage) of being a sole practitioner, and can afford to have some flexibility in terms of my care and management of my pregnancy.  He said that they work very well together, so it would be a good fit if I feel comfortable with him.  If that doesn’t seem like the right match, he gave me a couple other names to consider, and will cover me for however long it takes to find a new OB I’m comfortable with – even indefinitely.  But I think I’ll probably have a good fit with the doctor on Monday.  I just have some things I want to clarify with him, and ensure that he can work with my home health company and what his practices re: high risk pregnancies are.  Dr. P. thinks it will be a good fit, but didn’t push it.

I asked about the rash that I seem to get from the Phenergan.  He said he doesn’t find it entirely shocking, though agreed that it’s odd that it is limited to my left arm when the Phenergan’s going into a central line.  He agreed with my assertion that despite the negative side effects, I’m still better off with the Phenergan than without.  I asked if he’d ever used a steroid protocol for hyperemesis and he said he hasn’t, but he’s seen it used with some success.  He’s had the most success with a low-dose thorazine drip, as odd as that sounds.  He was certainly willing to discuss options and keep an open mind.  I told him I don’t want to make any drastic changes to my protocol before Monday when I see Dr. F., and he said that was fine, and that either I or Dr. F. could feel free to call him anytime to discuss changing the protocol if necessary.  Mostly, he’d just like to see me getting some actual nutrition at some point, though admitted that the *most* important thing is the fluid, which I’m getting already.

I noted that I’m starting to have contractions already and he said that so far, my cervix still looks good (it did at this point in the triplet pregnancy also), but reminded me that sometimes there can be a drastic change without a lot of warning.  The hope, of course, is that my issues with the last pregnancy were largely related to the triplet factor, but it’s clear that I probably just am going to have issues with contractions even in the singleton pregnancy, so they’ll monitor my cervix very closely and make sure that they’re careful about any shift.  Yes, tocolytics are likely in my future, but probably not necessary yet.

He’ll see me back in two weeks and two weeks after that.  If I need to see him in the interim, that’s fine.  Also, he’s the doctor on call this weekend, so if I need anything over the weekend, he’ll already know what’s going on and is happy to handle it for me.  I mentioned that my old OB practice probably *has* to deal with me right now if something happens and he agreed but said that unless it’s a clear emergency (like sudden, heavy bleeding), they could be difficult about it so absent a clear emergency, he recommends I just call him directly.

So all in all?  It was a good appointment.  I got most of my immediate concerns addressed, and I have a reasonable plan for the future.  Now if only I didn’t feel so cruddy – but that’s neither here nor there.

Mostly, I don’t question what’s going on with my pregnancy – I don’t sit waiting for the next appointment with a doppler or ultrasound machine to find out if I’m still pregnant. I don’t need independent confirmation right now because I’m fairly certain that I wouldn’t still be throwing up in the event of a sudden fetal demise. So, mostly, I just don’t question my status as a pregnant woman. But you can’t totally take the infertile out of a veteran like me, so I admit that I am sometimes skeptical of the long term prospects of remaining in this state.

I don’t have any good reason for questioning it, but it seems to take a certain amount of hubris to assume that there will definitely be a baby at the end of all this sickness. I would have thought that getting into the 2nd trimester would have left me feeling better about the future. I’m well past the point of my miscarriage three years ago. I’m well into the 2nd trimester. And yet? Occasionally, something reminds me that it’s an awfully big assumption to make that all will be well. In some ways, I’m grateful for the constant, if miserable, reminders that I’m very definitely pregnant right now.

So what number will I have to hit to believe this is all going to be okay? I don’t know. I think I was about 31 weeks before I believed that with the triplets. But those are triplets. It was natural to worry.

For some reason, I can’t get out of my head that a pregnancy loss before 20 weeks is a "miscarriage" and after 20 weeks is a "stillbirth". For some unknown reason, I rarely consider the possibility of stillbirth, despite the fact that I know several women who have had stillbirths. For some unknown reason, it’s the risk of "miscarriage" specifically that crops up in the recesses of my mind occasionally.

I think there’s a societal feeling, at least around here, that miscarriages happen. That a baby lost through miscarriage never really had a chance in the first place, so that life is, somehow, less relevant. The trauma and tragedy isn’t as concrete as a stillbirth. A stillbirth is a real BABY that died in people’s minds, but a miscarriage was the loss of something… less. I know that we in the infertile blogosphere understand that this isn’t true, but in the general society? I think that the dividing line remains, at least in the collective subconscience. For whatever reason, I’m not worried that I’ll have a stillbirth – I don’t think of it as a real possibility. But there’s also something about knowing that NO ONE would deny me my right and need to grieve that loss, whereas an earlier loss… well, you’re just expected to get right over that.

I know I’m talking in circles, mostly because I’m trying to get these thoughts out of my head and onto the virtual "paper" in front of me.

However screwed up my "logic" (or lack thereof) is, I feel like when I hit 20 weeks, I’ll just… feel more secure. But, for the most part, like I said, it’s not that I sit around thinking about the fragility of this pregnancy. For the most part, I assume I’ll have a family of 7 (!!) next year. I’d just like that little voice that occasionally pops up and says, "you know it’s not too late to have a miscarriage!" to go away.

This episode of self-pity and self-indulgence is brought to you by the letters H and G and the number 5.

Toward the end of my triplet pregnancy, I acquired cholestasis in addition to everything else that was going on.  The tell-tale factor was that I was unbelievably itchy, particularly on the palms of my hands and the soles of my feet.  It was excruciating and the only good thing about it was that it was really only the last 10 or so days before I delivered.  I really hate itching.  It leaves me feeling powerless and out of control.  Worse, there seems to be no relief from it.  The cholestasis was probably the least  alarming thing that happened during my triplet pregnancy – but it was also the thing that almost pushed me over the edge.

So imagine my amusement with this pregnancy – my arm itches like mad where the dressing on the PICC site is.  And I’ve got a ridiculous rash all up and down my left arm, which seems to be exacerbated by the Phenergan (which is odd, because the Phenergan is going in a central line, so the rash should be systemic; plus, Phenergan is an antihistamine, so it’s illogical that I would have an allergic reaction to it).  I never, ever stop itching.  UGH.

Anyway, I left you hanging on my last post, so here’s the update:  I’m not in tremendous pain anymore – I had had an abscessed tooth, which resulted in an emergency root canal last week.  Not my idea of a good time, but at least the pain is gone.  I still, obviously, have the rash on my left arm, but I decided it’s not an emergency, and the home health agency keeps a good look at it every week, so if it were really alarming, they’d alert my now-former-OB or the perinatologist.  And as for the cramping and spotting?  Well, it’s just what I *do* in pregnancy.  It comes and goes, and I can live with it.

More annoyingly, I’m already starting to feel contractions now and again, particularly when I get dehydrated.  This is definitely something I could live without, but I’m seeing the perinatologist tomorrow, so I’ll see what he has to say about it.

On a brighter note, I think I felt George moving around today for the first time.  I’m reserving judgment until it becomes more regular and/or frequent, but I think it’s the real deal.

And that?  Is really all I have energy to write about right now.

At two years old, the triplets obviously don’t understand the concept of pregnancy.  Never mind that they aren’t very verbal yet, but it’s a pretty sophisticated concept for them to grasp.  They don’t have any sense of time beyond the very immediate past and the present.  I’m not clear how much they understand about the future, but I’m guessing they don’t have a sense of much more than the next few minutes or hours.

Still, I told the triplets that there is a baby in my belly.  Abby and Sam didn’t seem to react much, but Ellie seems to have absorbed the news.

She keeps poking my belly and saying “Babies!”

Um.

No.

BabY, not BabIES.

Oh please don’t let this child be better at sensing the future than highly paid ultrasound technicians and perinatologists.

So I’m OB-less.  You know that.  But, of course, out of the goodness of their hearts* the practice “is available for emergency medical care only until 12/20/2009.”  So… what constitutes an emergency?

I mean, does the fact that I’m in excruciating pain right now and don’t know what my pain management options are constitute an emergency?  I’m guessing not, but I”m not certain.

So, if that’s not an emergency, does the horrific rash that is running up and down my whole arm and seems to get worse when I get a dose of IV Phenergan constitute an emergency?  I mean, it’s not life-threatening, so is it an emergency?    It’s getting worse, but it’s still mostly limited to a fairly local area (from my left shoulder down to my left wrist).  Is this an emergency?  I’m guessing not, but I’m not certain.

And if neither of those are emergencies, try this one on for size:  What about the cramping and bright red spotting I’m having right now?  It’s been going on throughout the pregnancy – on and off, mostly off and now it’s back. Does this constitute an emergency?  I’m guessing not, but I’m not certain.

I’d continue to speculate – but I have an unbelievably bad toothache right now, and my brain isn’t quite functioning.  Sigh.

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*Oh, right – that would be “out of compliance with the law”

I know it seems logical and all – but I find it astounding that the FIRST thing ANYONE asks me when they hear I’m pregnant is “How many are in there this time?” or something to that effect.

I mean, don’t you think I’d mention the multiple factor if there was one?

So, while I know that you all were absolutely convinced that I should switch OBs – I wasn’t so sure.  The issue I had was mostly with one of the triage nurses at the practice, but I have my reasons for liking the doctors (one in particular), and medically, they were giving sound medical advice.  I didn’t want to start all over again with a new practice, knowing that I’d probably have very similar issues even with a new practice.  Besides, after I explained my frustrations to Dr. R. on Tuesday, there was a huge improvement in how things were being communicated to me.

But, it’s a moot point.  Because they’ve taken it out of my hands:

Dear Ms. Perky,

We regret to inform you that our practice will no longer be able to provide medical services to you.  We feel you need to find a physician with whom you will have a more communicative relationship.

Our practice is available for emergency medical care only until 12/20/09, which is 30 days from the date of this letter.

We suggest you place yourself in the care of another physician without delay.  You may wish to contact the State Medical Society at the number or website listed below for assistance with selecting a new physician.

[insert contact information here]

We have enclosed a medical records release form with this letter.  You may mail or fax the completed form to our office.  There will be no charge for the medical records transfer.  Your medical records will be available in our office for the period of time required by law.

Sincerely,

Drs. So and So, So and So, and So and So

You’d think this letter would have made my day.  After all, I wasn’t overly thrilled with them right now anyway, right?  But if they hadn’t fired me, I would have had time to wait until my perinatology appointment in less than two weeks before figuring out what to do about a new OB.  But I can’t be left without an OB for that long – I’m being followed by a home health agency, and they need a doctor to communicate to and to receive orders from.   But that hardly constitutes “emergency care” because it’s essentially maintenance care.

I don’t want to pick a new doctor without my perinatologists’ input, but if I call there, I won’t be able to talk to the doctors, I’ll be talking to the nurse who will just give me a name or two out of their files.  It is unlikely that I’ll be able to get an earlier appointment, since next week is Thanksgiving week, so I’m just going to have to wait.  But then – who do I tell the perinatologist to send my report to?  They can’t send it to my current OB because, again, that’s maintenance, not emergency care.

In an ideal world, I’d switch to a midwife – but I’m not a good candidate for a midwife.  So… I’m sort of stuck.

Finally, if I’d left on my own terms, I would have been able to come back for GYN visits after I delivered.  I no longer have that option.  I’ve had horrifically bad experiences with GYNs in the past and I had finally found a practice that I was comfortable with.

I know that the silver lining is that now I don’t have to agonize about whether to leave a practice that was rarely responsive and was completely inflexible in my care.  But it still smarts.  I hate it when people don’t like me.

In August, we had the triplets’ speech/language assessed on the Mullen Scale.  It’s not perfect, but we knew that, at the very least, it would give us a point of comparison for the future.  This had been suggested by J-man’s developmental pediatrician because each of the triplets were showing significant delays in expressive language and also in receptive language skills – especially Sam.

When Sam was about a year old, he responded to his name consistently. If you said his name from across the room, he’d turn toward you, make an odd little grunting noise, and wait to see what you were going to do now that you had his attention.  This was a really positive sign.  But by his fifteen month check up, he wasn’t babbling, he wasn’t talking, and he had stopped responding to his name at all.  This kind of regression is often a huge red flag for ASD, but he had no other red flags.  He made eye contact, he was sociable, he was cuddly and loveable, he was engaged – but this language regression was… troubling.  I actually hadn’t been too alarmed until their pediatrician told me I should really consider having their early intervention team assess all of them, particularly Sam, for speech/language issues.  As it happened, we had already scheduled that assessment on the advice of their developmental therapist, but the fact that our normally very laid-back, very “let natural development happen when it happens” pediatrician felt like there was reason for further investigation did alarm me.

To qualify for early intervention through the county, a child has to display, at a minimum, a 25% delay in a developmental area.   My kids had been receiving various services through early intervention since they were six months old, so it was easy to get a speech therapist to come out to let us know what she thought.  Sure enough, all three qualified – without any calculating necessary.  None of them were babbling, none of them had any words, none of them understood even simple directions, and the girls were only occasionally (and possibly only by chance) responding to their names, and Sam wasn’t at all.  They started speech therapy a couple weeks after their assessment.

The girls grew by leaps and bounds, though still far behind their age level, but we continued to see Sam lagging behind.  He’s not dumb, that much is clear, but it was also clear that he was really struggling in the communication department.  Since we already have an excellent developmental pediatrician for J-man, at one of our appointments with him, we asked for a few minutes of his time to talk about the triplets, after we’d finished talking about J.  We explained where the triplets were developmentally in terms of overall milestones, and more specifically in terms of language development.  He recommended that we have all three of them evaluated using a standardized scale – not so much because the scale is so telling, but because it would provide a frame of reference – another data point, though obviously not the only data point.

In August, when they were 23 months old, we had the speech therapist evaluate them using the Mullen scale – again, not a perfect evaluation tool, but a reasonable data point.  The girls, not surprisingly, tested about 6-10 months behind their expressive and receptive language skills.  Behind, yes, but definitely making progress.  Sam’s evaluation was sobering.  His evaluation assessed him as having the expressive language skills of a 4 month old and the receptive language skills of an 11 month old.  We were alarmed, but continued to be cognizant of the fact that this seemed to be his only truly significant area of delay.

We increased Sam’s speech therapy from once per week to twice per week.  The developmental pediatrician gave us some advice, which boiled down to “You’re doing all the right things, here’s what else to look out for and other strategies you may need to consider down the road,” and he also agreed with us that this seemed to be essentially a language delay, and not part of a more broad developmental impairment.  He recommended continuing to remain vigilant with Sam’s speech therapy, and noted that because Sam has some motor planning issues we should consider PT and possibly OT if his fine motor skills didn’t improve with the work on motor planning.

And, so, we got him evaluated for PT services, all the while not sure if we really needed the PT, but the PT said that he absolutely could benefit from services because he was showing significant trouble in motor planning activities, which was (and is) inhibiting his ability to participate fully in activities with his siblings and friends.  (Mind you, the PT is through our county’s early intervention  – we’re not paying her, so she doesn’t have to tell us he needs PT just to keep her paycheck – she gets paid the same whether Sam needs services or not).  And so – we started PT for Sam.

And it is becoming more and more obvious that Sam’s got something else going on – but we’re not entirely sure what.  He’s always clutching things, won’t ever put down the collection of things that he carries under his left arm at all times.  He FLIPS out when we change his clothes – whether it’s from PJs to daytime clothes, or vice versa (today I figured out that he was much more willing to be changed out of his PJs if he’s on the floor, rather than the changing table – so maybe it’s a balance issue?  I don’t know).  We talked to Abby’s OT (man, we have a lot of therapists in our lives!) and she said that the things going on with Sam probably warrant further investigation/evaluation beyond the PT that he’s already getting.  So that will probably happen soon.

But, meanwhile, the speech therapy and PT continue – and he’s doing quite well.  He still doesn’t talk nearly as much nor nearly as clearly as the girls do (and even the girls are still behind age level – but growing exponentially), but he finally has words.  At last, he has ways to communicate with us at least for some things.  Certainly, we always know when he wants to eat.  And when he needs/wants a new diaper.  And when his sisters are stealing his toys (MINE!  MINE!)  He’s really growing, and we’re so proud of his progress – it’s taken a lot of work to get here.  No doubt , even without so much speech therapy, he would likely have caught up to his peers – but it really could have taken years (it still might – but at least we know he’s consistently making positive progress.

But nothing could have made me happier than this evening, while in the midst of a tantrum, Sam cried out and formed his first sentence (okay, it wasn’t a grammatically correct sentence, given that it was missing a subject – but he subject was implied, as you’ll soon see.  He had a plastic water bottle that had contained gummy candies, a bouncy ball, and stickers from a birthday party we went to last weekend.  He desperately wanted to get inside the container, so I opened it, but took the gummy candies away (they weren’t kosher, plus it was pretty close to their bed time).  He was unbelievably distraught over the loss of his prized possession, and he started to throw a tantrum, while desperately reaching for the gummies.  “Mine!  Mine!”  I tried to give him the stickers out of the bottle.  “No!”  I tried to give him the bottle.  And then?  He cried mournfully, he sobbed, and he pushed the cup away from him and cried: “Don’t Want The Cuuuuuuuuuuuuuuup!!!!”

My baby strung four words together in order to communicate exactly what he wanted – or didn’t want, in this case – and although it was in the midst of a tantrum (thankfully, unlike Abby and J, his tantrums never last long and are generally pretty tame), I was so proud of my little man.  I still am.

*sniff*

After much delay and more than enough drama, I am now the proud owner of a shiny new, double-lumen PICC line.  And boy is it running better!  If only it didn’t hurt like hell.  I don’t remember the first line hurting this much after putting it in, but I also was laying in a hospital bed drugged out for a week after it was put in, plus it was a smaller line.

The problem with the previous PICC line (aside from the fact that it just wasn’t working particularly well), was that my skin all around the site was reacting VERY badly to the adhesive on the stat-lock, around the tegaderm, and the tape (which I frequently had to use in order to keep the tegaderm from peeling off.  I’ve never had this severe a reaction to adhesive before, but this was (and still is – it’s going to take a while to heal) excruciating.  I am so glad that I stood my ground and insisted that it be changed.

And now?  Having spent the entire day at the hospital, I’m beat, so I’m going to bed early tonight.