Baby Kicks

I love feeling my baby kick and move inside my womb.

Sometimes it hurts or is at least uncomfortable (especially when I can feel it actively trying to shift positions in there in the absence of amniotic fluid), sometimes it makes my constant need to urinate worse, but I love knowing that it is growing strong and using its limbs like it should.  As long as the kicking and squirming continue, I know the baby isn’t suffering.

It’s funny how such a small little thing can have so much personality already.  It can be kicking, punching, and squirming nonstop for hours, but the minute I tell my husband to try to feel the movements, the baby abruptly stops as if the whole thing is a game.

In church, the baby is usually especially active.  I think of a priest from a church I used to attend in California who said, regarding infant baptisms in particular, that the babies’ sounds are their own ways of praising God.  I can only think that the apparent joy my baby feels in church (I assume it must be that because it brings me so much joy) is our baby’s praises to God as well.

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Learning to Deal with Others’ Grief

I found a short but good article on how to comfort those who have lost a child (miscarriage, stillbirth, or the death of an infant primarily).  It gave guidelines on what is appropriate to say and do to help them.  I can say for myself that I have personally learned so much since we found ourselves confronted with grief two months ago when we were told that our baby has a very significant, life-threatening condition and would likely not live after birth.  

The comments others have made have (mostly) been well-meaning but often can sting as much as actual harmful words.  There are the obvious bad ones (I shouldn’t have to explain why these are just so bad):

  • My mother-in-law hassled us about why we weren’t getting an abortion if “the fetus is just going to die anyway.”
  • My supervisor at one of my jobs said, nonplussed, when I told her there was a problem with my pregnancy, “Well, better luck next time.”

And then there are the ones that seem logical:

  • I have already heard a couple of times (and dread all the times I will hear this): “Well, you’re young; you’ll have other kids.”  Yes, that’s true.  I might have other kids.  But first of all, that makes it sound as if this child lacks worth, importance, or value to me.  That a child can just replace another child, kind of like buying a new car to replace a broken down heap.  People are irreplaceable, no matter how young or small.  Second, most people don’t know that I’ve been told by a couple of doctors that having children will be difficult/impossible for me–that I have been struggling to raise my hormone levels so that my body stops attempting to emulate menopause.  I may be “just 25,” but fertility already starts declining around this point, even without the help of a body trying to already shut down its reproductive phase.  I may have a dozen children and years and years of fertility or I may never have another child or period again.  That doesn’t make the value of this baby more or less.  They are all the same.
  • Patronising statements like: “God knows best,” or the like.  Most of the time, the person knows and has faith that God does know best and that He is in control.  It is often the only thing holding that person together–knowing that there is a bigger picture!  But when you trivialise that pain by flippantly saying things like that, you discredit the person’s personal faith and ignore that a person is allowed to hurt even when they are fully aware of God’s omnipotence.  If Jesus wept upon seeing the full effects of sin–death–then certainly we can grieve over death as well.
  • Ignorant statements such as: “Hope it all works out.”  What does a person mean by, “work out”?  It will “work out” the way it’s meant to.  Does that mean if the expected outcome occurs, that it hasn’t somehow “worked,” that it has fallen outside of God’s plan and God’s view?  Like the patronising statements, this also belittles the grief and pain a person feels.

So what do you say to a grieving person?  Less is generally more.  Helping out physically is much better than saying thoughtless statements that do little more than sting.  Dennise Krause explains a few things in her article “Comfroting Those Who Have Lost a Baby During Pregnancy or Shortly Thereafter.”  It’s short, but hopefully others can read this and see what is actually helpful for dealing with another’s loss (or impending/potential loss like in our case).

http://jacwell.org/Summer_2002/comforting_those_who_have_lost_a_baby.htm

The OCA website has a summary of this article, along with a little more, by the same author in its section on October as Pregnancy and Infant Loss Awareness month in the Orthodox church.  There are some books listed as resources at the bottom.  I hope to get a hold of at least a couple of them to see how much useful material is out there on this subject.

http://oca.org/resource-handbook/familylife/october-pregnancy-and-infant-loss-awareness-month

The main thing is to support, encourage, love, and pray for a person (and the baby) before, during, and after a loss.  Understand that it doesn’t just “go away.”  Babies have souls like the rest of us, and our souls meeting have a profound effect on us.

Appointments ad nauseam

Yet another doctor’s appointment yesterday, with more already scheduled for the weeks to come.  This was the first one in the big city though.  We had to travel out for it on the first really bad day of winter out here (unusually late in the year), and were nearly late for the appointment.  Because of traveling, I had to take two days off of work for it.  Luckily, we got there just before the appointment started (rather miraculously), so they didn’t have to reschedule it.

I had an ultrasound, then a meeting with the director of the maternal/fetal health department of the big hospitals we’re being treated by and with a pediatrician at the children’s hospital who specialises in kidney issues.  As usual the diagnosis was the same: still no sign of kidneys, no amniotic fluid.  But, surprisingly, the growth was normal.  I am 29 weeks along, and baby is measuring 29 weeks in all the important areas–even, most shockingly, the heart size to chest cavity ratio.  At 20 weeks, the first specialist I saw hypothesised that by 24-25 weeks, the heart would take up most of the chest cavity since the lungs would no longer be developing due to low amniotic fluid.  Yet they’ve continued to grow (as we can only assume, based on the size of the chest cavity) despite the fact that I have not had any fluid for at least 5 weeks.  This was unexpected to me, and seems like it may have been rather unexpected to the doctor, though she always tries to be as dispassionate and emotionless as possible (which is definitely a strange juxtaposition with me since I can be very emotional, especially about certain things).  So we are definitely thankful for that.  Glory to God.

In light of the fact that baby’s growing on target, she said that we would aim for delivery at 36-39 weeks.  Once again, the timeline whiplash.  We’ve gone from 24-28 weeks, to “any time now,” to 32-36 weeks, to now 36-39 weeks.  She says that if the baby’s developing normally, the longer it stays in my womb, the better odds it has at lungs that will support it post-birth and enough weight to allow for dialysis.  She and the kidney specialist agreed that the baby must be at least 5 lbs. for dialysis to be possible–and bigger is better.  The doctor is still bent on C-section for me and seems to not want to even consider that any other option might be plausible.  It seems to me that they like C-sections because then they can fit everything into their schedules instead of waiting around with labour.  I want to be given options.  I want my baby to have the best chance at survival, but I also want to have the best chance at seeing my baby alive, and at not risking the health and safety of my future children.  Since my baby and I will be separated at birth, since I can’t deliver at the children’s hospital where the baby needs to be transported, I want to be able to be with my baby as soon as possible.  I have significant problems with painkillers of any kind, so the anaesthesia will likely make me delusional and ill for several days.  Even if it didn’t, they wouldn’t release me from a serious in-patient surgery in a couple of hours.  I’d be lucky to be released from a routine vaginal birth in a couple of hours.  I presented this to the doctor, that if the baby were transported and its health deteriorated and it died, I would never get to be with it, and she replied, rather stoically, “Yes, that’s true.”  She didn’t seem to think that was very important though.

Much of the appointment (post-ultrasound) was a lecture on the purpose of kidneys, how they develop, and what happens when we don’t have them (or they stop working).  I knew at least 50% of the content already, probably more.  Some things were new to me though:

  • Kidneys are not considered an “emergency” situation since renal failure usually occurs in about 5-8 days.  The real “emergency” is simply the lungs–making sure they can process oxygen and carbon dioxide and can support the baby.  Without lung function, survival cannot occur; kidneys can be delayed, especially if the baby isn’t fed (or at least, isn’t fed too much so that the body must dispose of toxins faster).
  • Kidney transplants (which would be done at 18 months or 2 years) are from adults, not babies.  Anyone can give the baby a kidney, as long as the blood types are compatible (the doctor eyed my chart, noting that I’m O-, and said, “Regardless of what the baby’s blood type is, you could give one of your kidneys because of your blood type.”).
  • Kidney transplants aren’t placed in the natural kidney spot, but in the abdomen or stomach (for a small baby).
  • Kidney transplants only last 12-15 years, so dialysis would have to be repeated and/or a new kidney found.
  • It’s possible the baby has very small, non-functioning (or low-functioning) kidneys that might even improve slightly upon being born, but they wouldn’t be enough to support the baby long-term, so some treatment would be necessary for that as well.

It’s a lot to think about.  Especially considering all of this hinges on the great big IF.  IF the baby can process oxygen and carbon dioxide.  Even if the baby can initially (I’ve read plenty of stories of babies that came out crying and died within an hour or two from lung failure), it doesn’t mean it is sufficient long-term, so some assistance might be necessary.  So IF the baby can survive the almost insurmountable odds stacked against it, then we can work on treating the kidney issue.  Then that is a long, hard road.

I took it all very calmly, more like a classroom lecture than a discussion about my baby.  I knew a lot of this stuff, and it was mostly educational, not decision-making as I was led to believe this meeting was going to be.  But then the doctor said, “It is important to remember that we don’t know why this happens.  We don’t understand why the kidneys don’t develop sometimes.  But it is critical for you to remember as parents that this is not your fault; this is not something you did or didn’t do, this isn’t about something you ate or didn’t eat.  We don’t know what causes it, and we don’t blame you and we don’t want you to blame yourselves.”

I burst into tears.  I’m pretty sure everyone in the room thought I was strange for only then crying, but I always seem to cry at the most inappropriate times.

I’ve been having a lot of feelings of self-blaming because I feel like if a problem occurred while the baby was growing in my body, then it must somehow be my fault.  I must’ve erred somehow and caused this.  It was my body’s responsibility to keep the baby safe and healthy and my body failed.  It’s a really hard thing to cope with: that the safe haven of the womb can sometimes not be perfect.  But for some reason it is harder for me to accept that it isn’t my fault.

Instead, I don’t have the C-section that I am just blindly supposed to accept as a great convenience to doctors and baby and my baby dies, then it will be my fault.  Even if the baby wouldn’t’ve survived anyway.

It’s hard to make a right decision when all the decisions seem wrong.

Preparations

I’ve decided to take on a new project to try to occupy my mind and my time (what little I have!) and do something for my baby, since so far we really haven’t done much of anything.  (So much different than I thought things would be by the time I was 29 weeks pregnant.)

I want to pick up my knitting needles again and make a baby blanket.  The problem is that I’m easily distracted and have a lot of trouble remembering where I am with the pattern, so it’s going to need to be easy enough that a couple of mistakes might not matter…

Now if I can just find the right pattern.

If I just get to make one blanket for this little baby, then I want it to be just right.  At the very least, it will be something that we can line the coffin with.  

I can’t decide if it sounds like I am a terrible, faithless person to be making burial plans, but since that is the most likely outcome, it makes no sense not to.

My husband told me the other night he ordered a simple little casket from someone from the church who makes them.  I feel like it just makes sense to prepare for what we’re supposed to expect.  Quite honestly, I’m not sure what we’ll do if the baby survives at this point.  It seems like the variables involved make it impossible to adequately prepare our home or ourselves for whatever might happen in that case.  It certainly won’t be like everyone else I know who goes to the hospital and brings baby home a day or two later to put in its crib.

So here we are: instead of like the other women I know who are pregnant and collecting diapers, toys, clothing, and cribs, we are collecting the few things our baby will likely ever need: a blanket, a set of clothes, a baptismal cross, and a coffin.   

29 Weeks

For a while, I didn’t think I’d make it here.

Initially, when my doctor discovered my amniotic fluid was low (5cm at 20 weeks), she could only cite one case she had personally seen of low amniotic fluid in her practice.  The woman was sent to stay in the big city to be monitored by specialists at 24 weeks and delivered at 27 weeks.  She assumed that, for whatever reason, I would probably have the baby before 28 weeks and would probably need to be out of work and away from my hometown long before now.

But here I am: just finished a half-day at my part-time job at the library this morning, still waiting it out at home.  The last specialist I saw said she didn’t think I’d go into labour early (or at all), and that we’d have to pick a time between 32 and 36 weeks to induce, provided the baby doesn’t start having problems (cord compression) before that time.  We’re going over to the other side of the state this week to meet with all of the folks at the two hospitals that will be treating my baby and me.  I am not exactly excited about any of this.  All they’ve done is given us impossible decisions.  We won’t know the right answer till we are looking back on it.  I hate it.

am excited, however, that the baby has made it this far.  Every extra day and week we get to spend with baby before it’s born (which will likely be our last day with baby) is precious and a sort of miracle.

Maternity Stores are Hell

I hate shopping for maternity clothes.

The cashiers are always chatty and nosy.  

But there is no where else to get the things I need.  I have tried to find as many articles of clothing (baggy sweaters and skirts with elastic or drawstring waists) as possible at non-maternity stores (they’re cheaper and don’t make me look as obviously pregnant), but some things are unavoidable.  Like finding a bra to sleep in.  Or tights that actually fit (though I will rant about those later).  Or a maternity belt (more like back brace) to relieve (or attempt to relieve?) my excruciating back pain.

I just want to buy what I need and leave.  I don’t want to be interrogated about what gender my baby is (I have no fluid so there’s no way of telling), when I’m due (they won’t let me carry that long so what does it matter?), whether I’m going to use cloth diapers or disposable diapers (if my baby has no kidneys, there won’t be a need for diapers at all), and other such questions ad nauseam.

I typically just answer, “I don’t know,” to all of their questions and try to look extremely uninterested in talking, but they just won’t STOP.  There have been a few times I wanted to just outright say, “Listen, my baby isn’t even expected to live and you’re just rubbing salt in the wound.”  But I don’t want to be blatantly rude.  I’m just sick of the questions.

I wish I could get maternity clothes, or things that worked like them, somewhere that didn’t scream, “OH YOU’RE HAVING A BABY!!!!”

*Side note about maternity tights: They are my biggest frustration right now!  I need them to wear under my skirts to keep my legs warm, so I bought a couple of pairs in my size.  The maternity store says to buy things in the size you would’ve worn pre-pregnancy.  So I buy tights for women with a height between 5’6 and 5’10 (I’m 5’7) and in the weight range that matches mine.  Not only were they too short so I had a mid-thigh crotch (I pity the 5’10 women who buy those…), but they ripped in the rear end the second time I wore them because they’re too small!  I don’t even want to go back to buy a bigger size, so I’ve just been wearing the torn pairs…