It happened while on the phone with a friend yesterday.  Her daughter is almost 6 months old now.  I was commenting about how much I am loving age 3 and how much more freedom I finally have.  I said, “Yeah, the baby stage was just not my favorite.”

She replied with an almost tangible indignance in her voice.  She told me that she LOVES her daughter’s infancy and she has PLENTY of freedom.  I swallowed hard and tried just to move along.  But I couldn’t.  I had this idea in my head that I was being judged for what I just said.  Judged for saying I didn’t love the baby stage.  I started my reply.  Lots was going through my head and only some of it came out of my mouth (at least I have learned something!).

I told her that I might not have felt that way if we had had ANY help during Aidan’s infancy.  We have NO family here and our friends didn’t/couldn’t do much to help us.  So for Aidan’s first year we had very, very few breaks.  I reminded my friend that her parents live a few miles from her and will take her daughter absolutely whenever she asks.  I continued by saying that she also has a full term healthy daughter, while we had just taken home a perilously premature baby on home oxygen and with a saturation and apnea monitor.  I reminded her of my “Summer of Puke” and how hard it is to enjoy a 6 month old who is battling such food aversions that he vomits on you 4-6 times a day. 

I didn’t even get into all we battled the first couple of years, but when I look back on it, sometimes I am surprised we made it.  That our sanity held.  That we managed to remain married while things were so hard.  So just for a moment I am going to allow myself to remember all we managed to make it through.  Bear with me.

Early subchorionic hemorrhage during week 7.  Bad quad screen during week 16 of pregnancy.  21 week ultrasound reveals severe IUGR.  Amniocentesis comes back with 46XY baby.  Preeclampsia hits at the beginning of week 24.  Baby doesn’t even weigh a pound yet.  Prognosis is grim.  Strict bedrest at home.  Week 26 sees blood pressures no longer controlled at home and I am admitted to the antepartum ward for worsening preeclampsia.  Each day we are subjected to ultrasounds that decide the fate of whether or not I am allowed to carry the baby for another day.  27w 6d.  Severe Class I HELLP syndrome.  Liver threatening rupture.  Platelets nearly nonexistent.  Aidan is starting to show some signs of distress.  Emergency cesarean.  Aidan weighs 1lb 8oz and is 12 inches long.

7 weeks on a ventilator.  Bronchopulmonary dysplasia develops sentencing Aidan to scarred lungs.  We are fortunate and do not experience brain bleeds or sepsis while in the NICU.  We spend 105 days going to and from the hospital until we can finally take him home. 

Aidan comes home on December 12, 2005.  We are happy but scared shitless.  He has home oxygen (not that big a deal once you know what you are doing).  But the saturation monitor is another thing entirely.  He needs to have it on, especially while sleeping to let us know if he needs his oxygen turned up.  Lots of false alarms and almost no sleep for Brandon or me.  December 25 sees us back in the ER and Aidan has viral pneumonia.  We didn’t even make it 2 weeks at home before something happened.

January 2, 2006 is a night that neither Brandon nor I ever want to relive.  Aidan was happily eating a bottle and for whatever reason, he aspirated.  He choked a little and vomited.  Brandon laid him on his stomach while he grabbed for a spit rag.  I looked over and noticed Aidan seemed a little blue.  I said, “Brandon, is he breathing?” 

Brandon looked and never even replied.  He grabbed Aidan, did back thrusts and then turned him over and gave him breaths.  I am not sure I have ever been more scared in my life.  I called 911 and I kept saying out loud, to myself, “NO! NO!  Not now!  Not after we went through all this!  If you were going to take him, you should have taken him while he was in the NICU.”

Brandon flipped him over one more time to do the back thrusts and I was on the phone with 911.  Aidan started crying.  Brandon had him breathing in well less than a minute.  The 911 operator sent the paramedics to check him out.  The paramedics looked him over thoroughly, felt reassured that we had a monitor, and told my husband, “Good job Dad.”

The winter and spring were lonely.  The RSV risk was so high we didn’t dare expose Aidan to germs with his fragile lungs.  We spent those times in relative isolation.  In the spring, Aidan came off his oxygen and we started solid foods.  He must have had body memory of that ventilator tube, because he developed a HUGE oral aversion at that time.  I spent most of the summer learning what I could/could not do when it came to food with Aidan.  And I spent most of the summer cleaning up vomit.  Finally around his first birthday, I talked to his pediatrician and said I thought he needed feeding therapy.  He agreed and we started.  Gratefully, it did wonders and we have not had behavioral or sensory vomiting in a very long time.  Probably almost a year and a half. 

That January, Aidan had to have a minor urological surgery.  We had no idea what was about to happen.  About a month later, Aidan got VERY sick.  Fevers of 105+ for a few days at a time.  The night I knew something was really wrong, we were in bed with him and he woke up suddenly and vomited bile.  He was lethargic and we both knew a trip to the ER was our next step.  The ER doc ran all the expected tests.  He did a chest xray, urine sample, and drew blood (just in case, he said).  Well, somehow the lab lost the urine sample, but the chest xray was clean and we needed to wait on the results of the blood culture just in case.  I think we went home with antibiotics and he had been rehydrated while in the ER.  He was tired and listless the next day, but did better.  The following morning, my pediatrician called me and asked me where I was.  I told him I was at home.  He informed me that Aidan’s blood culture showed Enterococcus growing in his blood.  Aidan had sepsis.  This was deadly serious.  I needed to get to the hospital right away.  The doctor had already called and done the preadmission over the phone.

Aidan  spent the next two weeks in the hospital on IV gentamicin and ampicillin.  I had a nagging feeling that this somehow had something to do with the surgery the prior month, so I called the doctor who had done the surgery and explained my theory.  He told me that we could set Aidan up for a VCUG.  This test shows the dynamics of the kidneys, ureters, and bladder and would show if a bladder/kidney infection had been the source of the sepsis.

The test was conclusive.  Aidan’s left ureter had mild reflux allowing urine from the bladder to travel back up mildly into the kidney.  Not normally a problem when the urine is sterile, as it normally is, but a huge problem when you have a urinary tract infection.  Aidan likely got the UTI after surgery and it travelled to his kidney where it went into the blood and he became septic.

The condition was called VUR and occurs in about 5% of kids.  The angle of insertion of one or both of the ureters into the kidney allows for the flap to allow backflow into the ureter and up to the kidney.  We could wait for Aidan to outgrow this (at about age 5or 6) or do a minimally invasive procedure where a bulking agent called Deflux is injected into the bladder wall to bulk up the area near the valve and prevent it from backflowing.  We chose this.  As a result of the kidney infection that moved to sepsis, Aidan’s left kidney was scarred minimally.  Gratefully his right kidney is measuring a bit larger than average so it seems as if his body is compensating.  His left kidney is still slightly smaller than his right, but it is growing on the same trajectory as the right one, so the doctors believe he will be just fine.  Even still, we need to have kidney ultrasounds every couple of years to be sure.

Meanwhile, Aidan was sleeping poorly.  When in our bed with us, I noticed he seemed to sometimes pause for several seconds, and then almost gasp a bit when he took his next breath.  It sounded a bit like sleep apnea to me and I asked his pediatrician about it.  He referred me to an ENT who told me his tonsils and adenoids were big but not huge and she would want a sleep study to confirm apnea prior to feeling ok about surgically removing tonsils and adenoids from a 1 1/2 year old.  We went for the sleep study.  The results were horrendous.  Aidan had 54 obstructive apneas in 7 hours of sleep.  During REM sleep, he had an arousal almost every other minute.  The theory was that many former preemies have some transient low tone in their trunk.  When we sleep, all our muscles relax, including the ones that hold our airway open.  So in a sleeping, former preemie with borderline tonsils/adenoids, there was a “perfect storm” being created for obstructive apneas.  His tonsils and adenoids came out the following month.  He slept like a different kid.

At this point, Aidan had gotten pretty healthy.  He was about 1 1/2 years old adjusted age. 

Even reading through this sounds overwhelming now.  I can’t quite believe we went through all that in such a short period of time.  We also spent the first couple of years worried about his developmental milestones.  He managed to reach them all on time, but it doesn’t stop a preemie parent from wondering if it will happen.  Instead of joyfully watching your child sit for the first time, or roll for the first time, a preemie parent wipes their brow and thinks “Phew!  He managed to do that one on time.  What’s next?” 

So to bring you full circle, perhaps you might understand why the comments of my friend hit a nerve.  It isn’t as though I didn’t love Aidan and didn’t WANT to enjoy his infancy.  I just couldn’t.  It is hard to enjoy anything when you are living through that much fear. 

As we celebrate bringing him home to us 3 years ago today, I mostly don’t think about that stuff.  I mostly live in the here and now.  The now of  a precocious 3 year old boy who is giving us a run for our money.  He is bright.  He is funny.  He is joyful.  He is loving.  But it took a lot to get us here.  And while I don’t think of the hard times very often anymore, they will always be there with us.  They are part of our experience as parents.  They played a part in shaping who we are today.  The way we navigated them (I believe) speaks highly of us as a family. 

The sting of prematurity never fully goes away.  But gratefully I can say that it does fade into the distance a bit.

 This is the explanation of the MPAA’s PG13 rating for movies.  After what I witnessed on Sunday, I think perhaps we should develop a new rating system to try to figure out which parents need the guidance. 

I went to see “The Dark Knight” with a friend of mine on Sunday evening.  If you like this kind of movie, it was really pretty good.  Heath Ledger’s performance was all it has been hyped to be and even better.  It is a VERY dark movie, and his portrayal of The Joker really crawled inside my head at times.  There were even a few times I leapt out of my chair a bit or turned my head for a moment.  I am a wimp.

The movie was about 3/4 of the way through when my friend and I both looked at each other at the same instant.  Had we really heard what we thought we just heard?  Yup.  The soft little yelp of a scared little girl.  My friend and I both noticed parents about 5 rows below us with two small children sitting on their laps.  The girl could not have been more than 5 and the boy 6 or 7!  Every few moments the kids would turn their heads into mom or dad’s chest during a scary moment. 

I found it difficult to enjoy the rest of the movie, because I was really concerned for these kids.  I can only imagine the nightmares these children are going to have.

I have noticed we seem to get all up in arms generally as a society when nudity is seen by our young children, but violence seems to be less of an issue.  Upon examination, if I was forced to choose between showing my young child nudity or graphic violence…well, there is no contest.  I think graphic violence shapes so much in a young child.   At least nudity is “natural” (plastic surgery aside…:-)), and someday he is likely to encounter the nude feminine form.  (A LONG, LONG time from now Aidan buddy….like 25 years or so!)

I felt really disturbed when I saw these kids at the movie.  The little girl, so obviously scared…that image will be with me for a while.   For those of you that have seen this movie…is there any way you would take a child of 5 or 6 years to see it?  Am I the one losing my mind?

I have two major objections to some of what I have been reading.  The first is the idea that all cesarean sections can be avoided. 

The cesarean rate in the US is too high at nearly 31%.  I doubt I could even find anybody that would dispute that.  I am not even sure there is a way to figure out what an expected cesarean rate would be if only medically necessary cesareans were performed.  I guess a rudimentary place to start would be to begin with the fact that 1 of 8 babies born in the US is premature.  I wonder how many of those babies were medically necessary cesareans.  Half?  A lot of preemie moms I know went into labor that could not be stopped.  But I also know a lot who developed severe pre-e progressing to eclampsia or HELLP.  And mothers whose babies were in severe fetal distress and needed immediate delivery.

In my case, my death and my son’s death without a cesarean on the night he was born was not only a possibility but a certainty.  I had developed Class I HELLP syndrome.  My liver was enlarged and threatening rupture.  Aidan was starting to have some decelerations.  The lab tests run on my blood even after Aidan was born were alarming…my liver values were through the roof and my platelets were all but nonexistent.  This is a classic case of a necessary cesarean.  I was only 28 weeks pregnant and waiting for an induction of labor would have killed us both.

The second objection to some of what I have been reading is the ridiculous notion that having a cesarean section means you didn’t give birth.  A quote taken from a blog I recently read stated the following, “Cesarean section surgery (notice I do not call it “birth”) is the number one surgery performed in the United States, and that number is growing. ”

I felt hurt and angry as I read this and other similar statements on other blogs.  What on earth is the purpose of saying something like this?  Is it to give some women a “wake-up call” regarding unnecessary cesareans?  If it is…I am not sure it will really do the trick.  You see, I think any woman who has an unnecessary cesarean is either uninformed or coerced.  I am not sure you fix either situation by guilting a mother regarding the way her baby came into the world.  Most women would be more persuaded by hard data, such as the fact that lung issues are more prevalent in cesarean babies.

What you have done for sure when you make such a ludicrous statement as “a cesarean is not birth” is to further damage the psyche of women who really needed cesareans.  I think the thought that really stuck in my head as I read these ridiculous statements was this:

Why do other women feel the need to marginalize the birth of my son?  Or the birth of any child?

Is it a superiority complex?  Do these women really believe that the way our children came into the world reflects on our mothering abilities?  Is it the feeling of being supermom because they had an all natural birth?  I would like to believe they just never stopped to consider the feelings of mothers in situations such as mine. 

I applaud any woman who has the strength (and good fortune not to have a medical need for a cesarean) to give birth to a child with little to no intervention.  But, ladies, birth is only a snapshot in the lives of our children.  We have countless opportunities to don our supermom capes throughout our children’s lives.  I didn’t get to be supermom by having a natural birth.  I had a much more medicalized birth than I ever would have dreamed possible for myself.  My child had a much more medicalized beginning.  I have had countless other opportunities to prove what I am made of.  I supported my son through a 105 day NICU stay.  I protected his fragile health when he came home.  I pumped day and night for 9 months to get my son breastmilk.  I took him to physical therapy to watch over his development, to the pulmonologist to get the best care for his lungs, I quit my job to stay at home.  I could go on and on. 

I measure myself as a mother not by the WAY  my child came into the world, but the fact that he is here and thriving.  He is a boy full of laughter and curiosity.  He is fiercely attached to both Brandon and me.  We have had complete strangers comment on his love for us.  He amazes me each and every day of his life.  We didn’t get a normal or optimal birth experience.  But if I have learned anything in the last 2 1/2 years it is that there was never a truer cliche in my life than this:  “It’s not what happens to you, it’s what you do about it.”

Of course I gave birth to my son.  I prepared my body to sustain his existence.  I took immaculate care of myself.  I carried him to viability when many women with my condition miscarry.  I listened to my body and approached my doctors when things didn’t feel right.  I dismissed every moment of discomfort I had on hospital bedrest to provide more time for my son to gestate.  I sacrificed for him up until the moment of his birth.  I was willing to allow myself to get sicker and sicker so long as it provided him more time in my womb. 

I have every right to be proud of the birth of my son.  When I talk to him about the day of his birth it will not be with regret and shame.  I have nothing to be ashamed of.  I did everything humanly possible for the well being of my child.  I do this every day.  This is the measure of a mother…..not just the birth experience. 

There is a diet that claims to prevent 100% of preeclampsia and HELLP.  My sniffer went into overdrive.  100%?  There is almost nothing in medicine that can accurately have the word 100% attached to it.  I did some reading about this diet and started becoming enraged.  I found many sites that spout the claim found on the diet’s website.  Their claim follows in blue…word for word from the homepage of the site.

“Toxemia. Pre-Eclampsia. HELLP Syndrome. Premature birth.
Low birth weight. Intrauterine growth retardation.

It’s not genetics. It’s not random. The cause is NOT unknown. Toxemia CAN be stopped. Preeclampsia CAN be stopped. Best of all, YOU can stop it!

HOW? All the scientific research being done on toxemia and preeclampsia these days is focusing on treatment, and none of it is promising. But the research has already been done, many times and many ways in the past 50+ years, and we know that you can PREVENT this from happening to you in the first place, no matter what your personal history may be. The simple answer? GOOD NUTRITION.”

Oh, gosh!  Why the hell didn’t I think of that?  Good nutrition?  Guess it is my fault my son was a preemie! 

Except….except that it’s not my fault.  You see I followed this diet.  I clicked on their sample diet and I can tell you….that is what I was eating.  Yet, I still developed Class I HELLP. 

Now, don’t get me wrong.  I believe nutrition and protein intake play a huge role in pregnancy.  It is this idea that pre-e and HELLP would go away if we all followed the diet.  But it won’t.  You see, preeclampsia is a syndrome.  (ie. a disease that may be triggered by several independent factors that leads to a common situation (compromised placenta)   In my particular case, I was in ridiculously good shape going into pregnancy.  My resting heart rate was in the low 60’s, my baseline BP was 105/60, I worked out and taught classes at the gym 6 days a week, and (as I recently discovered) I ate this site’s recommended diet. 

When the underlying reason for your pre-e and HELLP syndrome IS actually genetic, diet manipulation can only go so far.  In my case my homozygous MTHFR c677 was my problem.  Following the diet to the letter would not have saved me from pre-e or HELLP.  Knowing prior to conception that I had this thrombophilia might have….heparin could have been given from early on.

I think there is even a bigger picture here.  It is the “Pregnancy is not a disease” movement.  For most women….it isn’t a disease.  It is a natural part of life.  But there are those of us that fly in the face of that fanciful notion.  Those of us (and our babies) who need medical intervention, sometimes drugs, and science to intervene throw a huge monkey wrench into that movement.  So what is the solution to explain us outlyers?  That the bad things that happen to us ~5% of pregnant women must be OUR fault.  That is essentially what this diet is purporting. 

This is not only grossly inaccurate but emotionally damaging to women who have done everything right and still ended up with pre-e, HELLP, and/or a premature baby.

I love it when I see that new research is uncovering more of the mystery behind pre-e and/or HELLP.  All that I ask is that before some well-meaning soul tells me about it, writes about it, etc, that you actually check to see what kind of research is being touted.   Is it peer-reviewed? Randomized?  Double blind?  Placebo controlled?  Prospective or retrospective?  The answers to these questions matter.  You see this is the benchmark to which I was held every day of my professional life.  I worked for a pharmaceutical company and whenever I presented a study to a physician these were the criteria they asked about.  When a “study” didn’t meet all of these criteria, it was treated with great skepticism.  I have searched extensively for studies done on this “diet” that meet the above criteria.  Surprise!    There are none.

This theory makes me angry.  It makes me sad.  I wonder how many former pre-e or HELLP sufferers have read information about this “miracle diet” and felt their heart sink and then blamed themselves.  It is this kind of misinformation that further damages already traumatized women.

There is a wonderful thread I found on the Preeclampia Forum website that has numerous links to peer-reviewed studies that will dispel the notion that “Mommy could have prevented it.”

http://www.preeclampsia.org/forum/topic.asp?TOPIC_ID=9742&whichpage=1&SearchTerms=%2Cbrewer%27s%2Cdiet

 I also wanted to send a shout-out to my MTHFR/HELLP/preemie mom pal Kathy, who I just discovered as I was editing this post, wrote about this very issue.  She makes some excellent points as well.

I think moms spend enough time playing the guilt game in their own heads without adding unsubstantiated fuel to the fire.