Why I'm Pro-Birth Control Access and Pro-Choice

I previously blogged about my thoughts on birth control and why it was medically necessary for me.  Now that I've had a hysterectomy, I no longer have to worry about those issues--for myself, anyway.  Unfortunately, I find myself confronted by an even larger worry looming on the horizon--how birth control options and access, and abortion restrictions will affect my daughter.  Yes, I know, she's only 3 (almost 4).  I can hear your incredulity.  However, I want to talk about this because I want to provide another perspective to the social discussion on sex, birth control, and abortion--one that highlights why this issue is much more complex than many of the people making the decisions about it are considering.

So, why am I talking about birth control and abortion with respect to my preschooler?  First, because I started menstruating at 9, so we are easily a mere five years away from her being able to get pregnant.  Do I anticipate her having sex at that age?  Heck no!  But, I am a realist and know it happens--my mother taught a 7th grader with three children!  I will do what I can to educate her and impress upon her that the repercussions of this decision is even more weighty for her than her peers.  Nevertheless, I cannot control the world, so I have to consider that she could be sexually assaulted, like I was at age six.

I imagine you are thinking, "But that's true for everyone.  What's the big deal?"  The big deal is, for most people, pregnancy is not a death sentence.  Given her unique anatomy and PAH, a pregnancy will likely kill my daughter.  Her body won't be able to handle the increased blood flow and lung function necessary for a baby to grow, let alone tolerate labor and birth.  And, even if she somehow survived pregnancy, the medications she takes for her heart condition are contraindicated for pregnancy; indeed, one of them is a black box drug that causes severe birth defects.  Unfortunately, it also cannot be used in conjunction with hormonal birth control.

Given that most states are passing abortion restrictions that don't include rape or health of the mother exceptions, I cannot simply hope that it won't happen to her.  Under these conditions, I feel I must take a proactive approach to keep her safe.  So, how do I protect my daughter?  Since hormonal birth control is out, and most of the other forms require reliance on the other party or aren't effective enough, in my opinion, when death is the alternative, I will likely get her an IUD.  The only other more effective alternative would be to sterilize her and that's not going to happen--medicine advances all the time, and it's possible something could change in the future that would make her able to safely carry a pregnancy.  Given my own struggle with infertility, I am not going to do that to her.

I get how crazy it is to be talking about getting an IUD for my child.  Still, I can't think of any other acceptable options.  Not when the alternative--whether by mistake or violation--is a death sentence.  I'm not telling you all of this to get you to change your beliefs or your position on these issues.  Instead, I'm simply offering you the background to understand why my position is pro-access, pro-choice.

(Nearly) Impossible Medicine

The other night, Lil' Bit came home from daycare looking a little rough.  Gone was her happy, bubbly, sassy self, replaced by a slow, sad, quiet child who didn't want to do anything.  She was sick.  That much was clear.  But, her nose was clear and she just had a little cough, so we weren't too worried.  She went to bed early and with little fuss.  Around 9:30 or so, we heard her crying.  When we went to check on her, we discovered she had thrown up and had a raging fever.  Her face was red and it was clear she felt horrible.  Since this is the kid who didn't even break a fever when she had RSV, we cleaned her up, packed her in the car, and headed for the ER.  Her fever was 101 under the arm, which meant it was probably higher than that, so they took her back to a room.  Long story short, although she got the flu shot, she tested positive for Influenza type A.  They prescribed Tamiflu for her, along with Motrin and Tylenol every four hours to keep the fever down, and we arrived back home around 2:00 a.m.

Later that morning, Phil goes to pick up the Tamiflu, only to discover that none of the local pharmacies carry it.  He drives 30 minutes into the city to go to a hospital pharmacy where, once they got the prescription, it took them an hour to compound it.  Turns out, any of the local pharmacies could have compounded it--they just don't, so they say they don't carry it.  Phil then drives the 30 minutes back home.  So, after a three-hour production to get the Tamiflu, we have to figure out how to get all of this medicine into Lil' Bit.  See, if you recall, Lil' Bit already gets medication 7 times a day.  The new meds would require an additional 6-8 meds a day.  So, we were now looking at 13-15 medications PER DAY!  For a child who is only up 14 hours, this averages to almost one per hour.  Worse, anything that has to be taken by syringe, or any way other than the way we do her regular meds, and she throws a fit and won't take them.  It makes me angry that doctors fail to take into consideration the practicality of what they are telling parents to do.  From the doctor's perspective, they have dispensed their wisdom.  It is now my problem, as the parent, to figure out how to implement this, seemingly impossible, regimen on a two-year-old.

So, first, we made a chart and figured out when each of these meds had to happen, and figured out we could probably manage 13, but no more.  As a result, she gets five meds between 5 and 6:30 a.m.; four throughout the day; and another four between 5 and 6:30 p.m.  We discovered that pills were better than liquids and that, at the age of 2, there are pill forms of Tylenol and Motrin she can have and (if it's grape flavored) will take.  As for the Tamiflu, which is in syrup form, Phil figured out a way to mix it with fruit puree and make it a single spoonful so that it looks exactly like her regular med doses.  Fortunately, we're only supposed to have to do this for five days.  Honestly, once these five days are over, I imagine the old routine of only 7 meds will seem quite simple!

Still, it's frustrating that the onus is all on the parents to figure out how to follow the doctor's instructions.  What if there had been no pills and we still had to try and force-feed Lil' Bit all of the new meds, the result of which is her throwing up (so there's no benefit from the meds) and her stopping taking her regular meds?  With advances in medicine, surely there's some way to do patches or some other transmission method other than heavily-flavored syrups that makes treating children easier.  In the meantime, we'll pray that Lil' Bit doesn't get sick enough to need more meds than she already takes.  But, if she does, at least we have a few more tools in our parenting trick bag.

Being an Advocate

As parents, one of our roles is to advocate for our children because they cannot yet advocate for themselves.    I know I don't always do a great job advocating for myself, but in many ways it is easier to advocate for Lil' Bit.  Parents often put their children's need before their own, which makes doing for a children what we can't, don't, or won't do for ourselves much easier.  Although we have already had lots of experience with this particular lesson given Lil' Bit's condition, we recently got an extra dose as I dealt with healthcare stupidity once again.

As you may recall, Lil' Bit takes several medications for her condition.  One of these medications is taken four times a day.  A few months back, we received a letter from the company that provides our prescription coverage, we'll call them RxCo, indicating that they were reducing the amount of medication that was automatically authorized to a total of 90 pills per month.  Basic math tells me that 4 times a day over 30 days is 120 pills.  Therefore, I needed her doctor to call and get special authorization to keep getting Lil' Bit's meds.  I contacted Dr. S's office and spoke with Nurse M, who asked me to send her the letter, which I did.  She left me a message a few days later to let me know she had contacted RxCo and gotten everything taken care of and to call her if anything came up.  The date for the change came and went and I heard nothing.  Everything seemed to be running smoothly.

Jumping forwarda few months, it came time to reorder Lil' Bit's meds.  I called RxCo's affiliated company, we'll call them AffCo, from whom we always reorder the meds.  Everything was copacetic.  They had active and current prescriptions, asked me how much we had left on hand, and scheduled delivery roughly 5 days before she would run out.  The date the meds were supposed to arrive, they did not.  We had a message from AffCo saying that her shipment had been "delayed" and to give them a call.  So, I called.  You can imagine my shock and horror as the woman on the line told me that they were waiting on an authorization for the meds.  As far as I knew, this had been taken care of back in April.  And more important, why the heck didn't they tell me this when I placed the reorder, rather than waiting until the day it was supposed to ship!  She kept asking me if there had been a change in her dose and I said, no, she's taken the same dose since November.  I indicated that I knew RxCo had changed its authorization plan, but that the doctor's office had already taken care of that.  Well, she didn't know.  She could only tell me that they didn't have what they needed to send the meds.  There was no point arguing with her, so I asked her again what they needed that they didn't have--a pre-authorization, she said.

So, after hanging up with AffCo, I contacted Nurse M.  She told me that both she and the doctors had contacted RxCo no fewer than 4 times and each time had been assured that it had everything it needed, but somehow the problem persisted.  I told her I was being told that there was still no authorization for the meds and indicated that Lil' Bit was running out.  She promised to call RxCo--again--to see what she could do.  I texted Phil with our predicament and, having done all I could, proceeded to breakdown in tears of frustration.  I felt like a failure.  It was my job to make sure this didn't happen and I had failed.  Yes, I knew there was nothing more I could do at that moment but wait.  I even knew that there was nothing more I could have done to prevent it.  I had, in fact, done everything in my power to prevent this very thing from happening, but it hadn't worked.  None of this stopped me from feeling like a failure, however, and I struggled not to eat a gallon of ice cream to make myself feel better while I waited.

 Soon thereafter, I got a call back from Nurse M.  She had talked to someone at RxCo--had their name and number--and had been assured that the authorization was now processed.  She gave me a number they had given her to have me call to call to see if the meds could be expedited now that the authorization was received.  I immediately called the number.  This is when my trip down the rabbit hole began in earnest.   Let's refresh:  the letter limiting medication authorization and to whom Nurse M had been required to speak was the primary company, RxCo.  The company that actually processed Lil' Bit's orders and indicated that it did not have an authorization was the affiliated company AffCo.  However, even within AffCo, I was required to deal with a specialty group for Lil' Bit's condition.  We'll call it SpecGrp. So, Nurse M has just spoken with someone at RxCo and gotten authorization.  She called me back and gave me a toll-free number for RxCo to call and see if they can expedite the meds.  I called RxCo.  I explained to the woman who answered why I was calling and she told me she couldn't help me and had to transfer me to AffCo.  The woman at AffCo began to help me, but once I name Lil' Bit's medication, she told me she had to transfer me to SpecGrp.  The SpecGrp woman then looked in the system and said they still had no authorization.  I explained that Nurse M has just been assured that we had it.  Well, she said, that's RxCo.  Although they are "the same company," AffCo and RxCo use different systems, so they had to wait for it to show up in AffCo's system before they would process it, which may not be for a few hours.  She would, however, "red-flag" it so that as soon as the authorization came in, it would be worked on right away.  Nevertheless, because it was already 4:00 p.m. on a Friday, it would likely not go out until Monday.  I asked her to also "flag" it to have someone call me on Monday if, for some reason, there was no authorization, so I could track down what was going on.  She assured me that she would.  Again, there was nothing left for me to do but wait.

Saturday brought a glimmer of hope.  I received an automated call from RxCo indicating that they had received an authorization for the medication that was good for a year.  Yay!  I thought that maybe things were finally working.  Sadly, they were not.

 Monday rolled around and I heard nothing.  Still, I was anxious because of how close we were to running out, so I wanted to just confirm that things were moving along to give myself peace of mind.  I call AffCo's SpecGrp.  I explained to the woman what had occurred on Friday and that I was simply trying to determine if the meds had shipped Friday or were on track to ship that day.  She looked in her system and said that there was no authorization and I needed to talk to RxCo, but that she would transfer me.  She transferred me to another woman.  I explained my whole story, again, after which the woman, sounding quite confused, said that I was talking with AffCo.  I explained to her why I thought I was talking with RxCo--because the previous woman told me she had transferred me there.  This woman looked in her system and said she saw an authorization so she didn't know what the problem was.  I said, well, the other lady said it wasn't there.  The new woman put me on hold to contact the pre-authorization department and try and figure out what was going on.  After about 5 minutes, she got back on the line.  She apologized for the wait and was beginning to explain something when she suddenly said, "There it is!"  Whatever she and pre-authorization had done had finally made the authorization show up in AffCo's system.  She exited the system and went back in to double-check.  The authorization was still there and the meds finally said they were "ready to ship."  She then had to transfer me to the shipping people with SpecGrp so they could re-ask me all the questions they had already asked when I initially requested the reorder.  When the woman asked how many pills I had left and I told her "10," she said, "So, you'll need this tomorrow then."  It was not a question.  [God bless her!]  We got everything squared away and, magically, they arrived the next day from the shipper.  Crisis averted!  [I had told Phil that if Wednesday had rolled around and there were no meds, I was taking my child to the hospital and checking her in so she could get the meds she needed.  That would have crimped the savings insurance was trying to reap for sure!]

 I am amazingly grateful to Nurse M and the final two woman I spoke with at AffCo and SpecGrp who actually took the time to figure out what was going on and make things happen.  But there were certainly many other people I dealt with who simply passed me off as someone else's problem.  And how much worse would things have been if I had relied on the fact that I didn't get a call to mean that things were processing?  This whole situation made me even more angry because I know that there are people who don't have the time or wherewithal to deal with all this garbage and probably get lost in the system and don't get their meds or whatever healthcare they need.  I am more convinced than ever that we, as a society, do not value human life.  If we did, we would not make access to healthcare so difficult.  The fact that it's difficult even for those with insurance means that the system is broken.  Don't try and tell me healthcare isn't already being rationed.  I'm watching it happen.

I know my job is to advocate for my child, but the healthcare system should not be working against me.  But I can neither fix it, nor bypass it.  Lil' Bit's condition means that I must deal with it on a monthly, if no weekly, basis.  I can, however, choose providers who will help fight the fight with me--like Dr. S and Nurse M.  And I can spend all the time and energy I have until I get what I need for my child.  And I will do it with every breath in my body.  I may get angry and frustrated and cry.  And I will do my best not to yell at those who have no control over what is going on.  But, ultimately, you better get the heck out of my way, because I will get it done.  I am Lil' Bit's advocate.  It is my number one job.  You have been warned.

Returning to Myself

The last month has been really hard for me.  I finally sucked up my pride and went to the doctor for some antidepressants.  I was exhausted and burnt out.  I had reached the point where I was nonfunctional and that wasn't helping anyone.  My morning routine was shot.  I quit making real breakfast and just ate cereal.  I stopped taking full showers every morning.  All I wanted to do after dropping Lil' Bit off at daycare was drive home and curl up under the covers.  I ate potato chips and Snickers bars for lunch.  I almost never ate dinner, and if I did, it was likely ice cream.

I always thought of myself as a strong capable person.  And, truth be told, I still am.  I was just dealt an extra heavy dose of life recently.  Still, I HATED having to get meds.  Nothing makes me feel weaker and less in control than having to medicate myself.  But none of that changes the fact that I needed it.

So, I go talk to my doctor and he prescribed me a mild, entry-level antidepressant.  It gave me nausea and insomnia the first week (not helping!), but those finally went away.  However, new and more problematic side effects started to occur and I ended up in the ER the Saturday before Easter (really not helping!).  I stopped that med immediately and when I went to my doctor last week he put me on a different class of anti-depressant.  This one has been amazing.  I felt better after two days.  I've even had a few bouts of baby fever--proving I'm feeling better!

In fact, yesterday I not only felt like my old self again, but I felt like I did before I had Lil' Bit.  I felt like a capable parent.  And as that awareness dawned on me, it occurred to me that maybe I had been dealing with depression longer than I thought.  See, I knew being a parent made you feel tired and overwhelmed, so when I felt that way after having Lil' Bit, I assumed it was just the lack of sleep.  I never felt sad or anything that I thought of as "depressed."  But, given how much better I feel now, I think I was suffering from mild postpartum depression.  Nothing huge, and nothing that wouldn't have gone away with time, EXCEPT for suddenly having all of Lil' Bit's medical issues to deal with, and a miscarriage, and, and, and.  Stress and grief piled up to create situational depression that exacerbated the postpartum depression I didn't know I had and *poof* the world was a horrible place that kept dumping on me and I just wanted to hide until it stopped.

Now that I have come out from under the clouds and feel so much better, I wish I had done this sooner.  I hate that my pride and stubbornness prevented me from seeking help.  But, rather than beat myself up about it, I can take pleasure in the fact that I did, eventually, do something about it, and now, I am loving being a parent again.  I *might* even consider doing it again.  But even if we ultimately decide not to try again, I feel like I'm in a better place to accept whatever we decision we make because it won't be made from what felt like a place of defeat or resignation, but from a place of comfort and acceptance.  I know this will sound crazy coming from a planner and control freak, but I'm finally looking forward to what lies ahead without knowing what it will be.  Who knew surrender could be so freeing?!  Oh, right...  Well, at least I finally got here.  Welcome to MWS 2.0 (Mommy, Wife, Self).  Let's take her out for a spin!

Frustrated Expectations and Tough Choices

So today we took Lil' Bit to the cardiologist for another echocardiogram.  Although her pressures were slightly elevated from earlier, it was generally the same--in December Dr. S got 42 and Dr. R got 48 and today Dr. S got 49.  Still better than the 60s she was at, but 20 is normal.  So, what does that mean?  I asked what purpose the meds served if the pressures weren't going down.  The answer was that they may be what's keeping her pressures at the level they are currently at.  So, instead of her having a heart cath this November and getting weaned off her meds, she's going to get a full-sedation echo this December and a heart cath next November when she's three.  That means we have to keep medicating her 6 times a day for at least the next 18 months.

The difficulty is that it's extremely hard to do anything when your child needs meds at 5, 6, 10, 2, 5 and 6, and it's extremely hard to find babysitters who you trust to medicate your child properly and timely.  It makes scheduling trips and just figuring out how to get in nap time and meal times really difficult.  Although we still plan to make our scheduled trips this year, it's going to take a lot more planning.

Don't get me wrong.  The fact that her pressures haven't increased is great news, and I'm lucky that there are meds that keep her healthy.  I just had thought the light at the end of the tunnel was this November and now it's been pushed out a year, with no guarantee that that's the end either.

And so, as I drove home today from the doctor's office, I asked myself several questions to which there are no easy answers.  We had attempted to schedule my pregnancy with Oliver so that I would be due after everything was done with Lil' Bit.  Now that the end won't come until almost 2014--if at all--are we willing to try having another child in the midst of all this craziness?  Can I take the risk of having another child knowing that, at least currently, I lack the capacity to cope if the next one also has medical issues?  How long do I have the patience and ability to wait while we try and figure out the answer to these questions?  The longer we wait, the older I get; the more we pay for embryo storage fees; the longer we make our child-raising years; and the longer we delay my hysterectomy.

I know that I don't have to (and shouldn't) make any decisions today.  But if I had to, I would say that I've hit my squeal point.  I think Lil' Bit will have to be enough.  I just don't have it in me right now to cope with pregnancy and Lil' Bit's meds and the lack of a guarantee on the health of any subsequent baby.  And that makes me even more sad.  Because I feel like I've lost everything all over again.  I am overwhelmed.  I am tired.  I feel like a complete failure.  I feel like I just can't catch a break and the world is dumping on me and I don't know why.  It sucks.  And all I can do, is just keep going.  Because really, at some point, I have to reach a tomorrow that is better.  I just hope it's sooner rather than later.

Mutant M

Unless you've just joined us, or have been hiding under a rock, you know I'm giving myself hormone injections.  As much as I am not a fan of giving myself shots, I must admit that I am still extremely lucky.  Why?  Because I don't seem to experience the side effects the way others do.  Yes, I got extremely emotional last time on the stims.  I went back and checked (thanks blog!) and, apparently, I got angry and irrational.  I'm not saying I don't experience any effects.  But, when I was originally researching IVF and what to expect, I was terrified of Lupron.  I read that it stung on injection, that it caused headaches, hot flashes, dizziness, nausea or vomiting, sleep issues, and all other types of issues.  Fortunately, neither last round nor this time have I had any such issues with the Lupron.  It never occurred to me that this was odd.  Every drug affects people differently and some people get side effects and others don't.  

And so it was, we were in to see my GP (general practitioner) last week for (yet another) ear infection.  I told him that we had elected to go forward with another cycle and that I was currently on Lupron injections.  He asked how the hormonal swings and other craziness was going and I said, "I don't seem to have any effects from it."  He looked over at Phil, as if seeking confirmation, in case this lack of symptoms was all in my head and I was actually a crazy woman.  "No, really," he reassured Dr. R.  "She's not having mood swings or anything."  Dr. R. looked back at me and pronounced me a "hormonal mutant."  After Phil and I finished giggling over this statement, I really wanted to ask whether Dr. R would certify my mutant status so I could qualify for the X-men.  After all, at heart, I remain a gamer and comic geek.

The Power of Routine

Last week, one of my friends at work noted that we must be getting into the groove with Lil' Bit's meds because I seemed much calmer.  I suppose that's true, although I don't feel particularly calm most days.  Glad I can still fake it :)  Anyway, her statement made me think.  There is something to the power of routine.  It's how we sleep-train kids-Bath, Jammies, Book, Bedtime.  Each night, once the routine occurs, they learn to expect what happens next--lights out, door closed, sleep time.  So, even though interrupting our day 6 times for mediation still is frustrating, as is waiting the additional 20 minutes each time to make sure the dose takes, we're much better at it.  We have something that resembles a routine and it has made life simpler.  That is not to say life has been anything close to simple.  All of this craziness on top of Advent was bound to be problematic--and it has been.  But we have managed to stay married and not to kill each other or lose any fingers or toes.  All in all, I think we're doing well.

In the process of working on things, we had a fascinating discussion last night as we were contemplating whether we were going to go forward with another IVF cycle.  Yes, dear readers, the lack of posts about shots and prep is not because we're being quiet this time around.  It's because we postponed it.  Knowing that stress is such a huge factor in whether a cycle is successful, and both of us feeling that we were in way over our heads, we called the center and pushed our cycle out one month, with the option to push it back further, if necessary.  We are now figuring out whether we are willing to go ahead this month, or wait a while longer, or do it at all.  In that vein, we wanted to wait until Lil' Bit had her follow-up appointment with her pulmonary hypertension specialist yesterday.

Before we get back to the fascinating baby conversation, take another quick detour with me as I summarize where we stand with Lil' Bit's treatment:

1)  We can finally stop one of her three meds (after weaning for 1 week).  Hooray!  Happy dance!  *Insert other related excitement responses here*

2)  Her two other meds are still 2 and 4 times a day, respectively, and can't be within an hour of each other.  So, meds still 6X per day.  Boo!

3)  Her pressures did not go down, but they also did not go up.  *Insert neutral response here*

4)  Her condition is likely chronic, but that doesn't mean she won't get off the meds.  There are generally no concerns for children with pressures where hers are currently, but they want to keep her on the meds for about a year to see if the pressures will go down further.  *Neutral response, maybe slightly positive*

5)  She doesn't need to go back to the doctor for 3 months and won't have to have a heart cath for probably a year!  Yay!!!! *repeat*

6)  She still has to have monthly blood tests for one of her meds.  Boo!!  *repeat*

7)  She can go back to daycare in January!  Woo freakin' who!!!  [This is, truly, what will save our lives!  As a brief aside--a giant thank-you to those ladies who have come to watch Lil' Bit at our house so I could go back to work!!!]

In sum, still lots to do, but generally good news.  Lil' Bit it doing great.  In fact, you would think she's on speed with all the extra energy she now has, which is, apparently, fairly common in children who undergo heart surgery.

We return, now, to last night's baby conversation.  *Spoiler alert*  We still haven't decided where we are.  But in the process of talking about it, something interesting came up.  Phil was talking about how difficult it had been to interrupt his day to have to come home and give Lil' Bit meds at various times.  We discovered that he was experiencing something akin to the frustration I had felt when I had to do all the pumping.  Before I moved to a 4 or even 3-a-day schedule, I had been pumping 6 times a day, roughly every 4 hours.  Count 45 minutes for prep and pumping and another 15 for clean up, and it honestly felt like all I did was pump.  I would just get started on something else when I would have to go back and pump.  Likewise, Phil would get started on a project and suddenly discover that he had to run home and medicate Lil' Bit.  5 minutes of driving, 10 minutes of prep, 5 minutes of feeding meds (if lucky), 20 minutes of waiting to see if they took, 5 minutes driving back and *poof* he was losing multiple hours each day.  In the midst of this discussion, we both became more cognizant of the toll things were taking on us.  He had a better understanding of how difficult pumping had been, and I had a better understanding of how coming home to give meds was affecting him.  And we both became aware that it was the disruption to our routine that was causing so much stress.  As we talked about what it would mean to have Lil' Bit back in daycare so that much of our routine could return, we began to see a light at the end of the tunnel.  Routine, it turns out, is important for more than getting babies to sleep.

Ultimately, it was a good and important moment in the conversation because we were both reminded that stress, frustration, and lack of sleep are mutual enemies, against which we must present a united front.  By recognizing that we are both "done," we are much better out being less snippy and not taking our stress out on the other person.  Don't get me wrong, we're far from perfect, but I think we're doing a pretty good job.

In any event, here we are.  No decisions on a second child and still somewhat stressed by the first.  But things are improving, and time is passing, and we're getting settled into a routine.  Which begs the question--do we really want to wreck our new routine when we're just figuring it out?  Stay tuned, dear readers, to find out if we're crazy enough to attempt it.

Assumptions

I have started several posts about our time at the hospital for Lil' Bit's surgery, and may or may not get around to finishing and posting them.  For now, we'll talk about today.  Today was to be our triumphant return.  Discharge day.  And it was.  Sort of.  We are all home and, although totally exhausted, we are doing fairly well.  But I relearned a few lessons today. 

First, I relearned not to make assumptions.  This lesson came upon the discovery that I had, in fact, made a giant assumption.  I did not realize I had, but I did.  I had assumed that surgery would "fix" my child.  Sure, it would be difficult and emotionally taxing and recovery would be hard.  But, in the end, surgery would either fix my child, or it wouldn't.  I never considered what would be involved during the waiting to find out period.  You know, the period where you get to bring them home, but you still have to give them meds.  That's right meds.  It never occurred to me that when I brought my child home she would be on medication, let alone three different meds multiple times per day.  Oh, and did I mention that they all tend to make her vomit?  We have learned a few tricks and most of the time they work.  But today we had 5 administrations for 3 doses, and lots of "clean up on isle mommy."  I hate holding my screaming child and trying to get her to take medication I know she needs.  I really hate having to do it 6 times per day.  I'm freaked out that I will have to start doing it 8 times a day once the third med finally arrives.  Yeah.  About that third med.  It's one of those black box medicines that I will need gloves to handle because I've signed up for another round of IVF and we will have to use separate syringes and pill crushers for.  *sigh*

As I sat on the floor, trying to be calm (but probably failing miserably) during the last medicine administration, I got angry and couldn't quite figure out why.  Until, thud, it finally hit me that I had made this giant assumption that once we brought her home, even if she wasn't fixed, we would be done for now.  I don't know why I never considered ongoing treatment such as meds, I just didn't.  And, quite honestly, I'm just thrilled that she didn't have to come home with an NG tube (and even more thrilled that I didn't have to be trained how to put one in and take one out)! 

This leads me to my second assumption.  I assumed that I was prepared to have her home.  I expected the return home to be a great relief.  Instead, I felt the same panic as last year when I brought home a newborn and wondered what the heck I was supposed to do with her.  The panic is the same, but the specifics are different:  What happens if she still won't drink whole milk or Pediasure?  (This issue is the subject of a post in progress about poor planning on my part).  What happens when she vomits up the meds at home?  How do we get her to take them when all the tricks we learned failed?  How long after taking the meds does vomiting count as not having gotten the dose?  (Apparently, the answer to this for our purposes is 20 minutes).

All of these are difficult things to handle by themselves.  Doing them on little sleep, after a long day of travel, with nerves and emotions still raw from 2 1/2 weeks of adrenaline and anxiety, is damn near impossible.  And yet, we managed to get her meds in her, give her a bath, and get her to bed.  We have overnight meds we have to set an alarm for and lots of other challenges ahead of us.  We're creating a chart so we can track and make sure we have given her all her meds-- a necessity, since we're lucky to remember our own names these days. 

But we're home.  And she's doing amazing.  And we're taking things one day at a time.  Which is, in fact, the only way anything can be done.  We live life, whatever challenges, joys, successes, and sorrows come our way, the only way we can.  One day at a time.  One minute at a time.  One moment at a time.  Sometimes, though, it takes a giant 2x4 upside the head to remember that lesson.  And man, do I have quite a headache.