Posted August 27, 2011 by singasongforyou
Categories: Uncategorized

Baby Henry Schuyler was born August 3, 2011 at 1:23am.  More on the name later.

I have barely slept since the birth and that is my excuse for the lack of update.

I truly thought he would be born within a week after I stopped taking the drug to keep him in.  One of the highly paid doctor’s that was supposed to look out for me went crazy and stripped my membranes at 37 weeks.  This could cause labor to start within a day or two.  I was so enraged I wanted to sue.  My sister drove here all the way from Northern California to be here to help and then no labor occurred.  We waited and waited.  Went to the beach, saw a bunch of movies, took Finn on some fun day trips, and waited some more.  Then 10 days passed and it got very close to the day when my sister would need to return to her own family.  In a way, I did not mind not giving birth just yet, as I was scared of what awaited us.  Our baby and his issues were still a mystery.  However, panic did set in about him taking so long, because I did not have a satisfactory back-up plan for who would take care of Finn while we were hospitalized and my sister needed to leave in 2 days.

Finally my due day arrived and I went in for my weekly check-up and 21st ultrasound.  I did not want to go.  I could not believe I had to get yet another ultrasound.  I was so sick of getting non-stress tests and talking to doctors.  I had a weird feeling, however, and before my appointment, I made sure my hospital bag was completely packed, my bills were paid and every nitty gritty detail was crossed off my list.  We needed a Hail Mary Pass and I hoped that during this appointment, they would find some reason to admit me.  Sure enough, by the end of the ultrasound, the technician said that my bag of waters was empty and I was going to have a baby today.  High five. 

I continued with the regular appointment, since the next step was to talk with the doctor.  I had been working with a team of 11 perinatologists, and happened to be seeing a male doctor that day that I thought was a little goofy.  He swoops in unaware of my empty water bag and just starts talking: “Would you be offended if I told you a story about your name?  I know a woman who has a pet cow named Colleen.”  This could possibly be the worst thing to say to a nine month pregnant lady who is supposed to be giving birth that very day.  At least if I was seeing him that morning in the clinic, he could not possibly be on duty at the hospital at the time I would be set to deliver.  But sure enough, he was on at the hospital that night from 7pm to 7am.  Luckily, he confessed to having gotten drunk the night before and admitted to being in a terrible mood.  Yay!  I kept looking at my sister wondering if this was really happening.

They would not let me go home or even go out for a nice lunch; I needed to be admitted right away.  An empty water bag could lead to a potential “cord incident”.  They plunked me in a wheel chair and wheeled me from the clinic to the labor & delivery floor of the hospital.  It would be almost a whole week before I was to see the light of day again.  I called Sasha at his work and told him to come downtown, as we are going to have a baby.  Of course he thought I was kidding.

By 11am, I was admitted and the process to induce labor had begun.  I was hopeful things would progress quickly enough, that I could deliver before the hung-over doctor was on duty, but no such luck.  They put me on a slow Pitocin drip, broke my empty water bag (that hurt) and labor began extremely gradually.  Finn was able to visit us in the room, but he was kind of scared of me in my hospital garb with my IV pole.  He could not see this part, but I also had a lot of things coming out of me.  They put a tube in my woo hoo to better keep track of my contractions and they also attached an electrode directly to the baby’s head while he was still in utero to keep a close eye on his heart rate.  Later I also had a catheter and there was a 4th thing coming out of me, but I forget what that was for.

By 7:00pm, my contractions were still only about a 3 pain-level-wise.  This was a teaching hospital, so the resident on duty, an inept goofball named Sam, checked my cervix.  They say that you should hope that whoever does the cervical check has long fingers to reduce the hurt level, but no one ever said anything about avoiding the on-duty resident with giant knuckles.  He hurt me so much I screamed out: “DUDE!”  I was only dilated to about 4 centimeters, so the doctor suggested I go ahead and get the epidural.  I did not want to jump the gun on that.  I am pro numbing the pain, but it seemed odd to not really experience much labor at all.  He insisted it would help to speed up the labor process, so I acquiesced.  Finn was ushered out of the room while the anesthesiologist worked his magic.  Once it kicked in, my sister drove Finn home & Sasha & I went ahead and got a little shut eye. 

Around 1:00am, I started feeling contractions through the epidural.  They hurt, but were mainly just distracting.  Precipitately, the doctor was there rechecking my cervix.  He said I was dilated to 10 and we were going to have a baby.   This is when I went into full panic mode.  “I am not ready.  I don’t want a baby.  What if there are horrible things wrong with him?  What if not only his organs are backwards, but his face is on the back of his head or his eyes are where his mouth should be?”  I said this all in my own mind as I started to push.  Between contractions, I started to feel woozy, but kept pushing like a champ.  Abruptly, the doctor says the word “episiotomy” and I say: “NO!”  Then he says: “heart rate dropping, cord around his neck!”  Well, by all means, cut, man, cut!  That is when resident Sam cut me from here to kingdom come and the baby popped out. 

They tossed this baby, covered in blood and carnage, onto my chest and I went into total shock.  He was screaming at me and looked like an 80 year old ex-tugboat captain in miniature.  I truly felt like I did not know who this was, that he was not my baby.  My whole body was shaking uncontrollably.  Big-hands Sam was trying to sew me up and had to tear out the stitches and start again.  (To sum up, do not get an episiotomy on your perineum in a teaching hospital). The room was full of staff that was either there because they were curious about our unusual baby or because it was part of their teaching rotation.  The baby was taken away to be weighed and then the NICU nurse was at my side telling me that they were going to do an X-ray and then we can try feeding him.  I tried to explain that the surgeon had told me that the baby would not be fed until a contrast swallow test could be done to make sure there was no blockage.  There was no note about this in his file, so the nurse kept insisting we could feed him.  No one was listening to me.  My body was shaking so bad, but no one seemed to care.  I was feeling terrified and insane.  The resident nurse in training kept trying to take my blood pressure, but the cuff was broken, so it literally felt like it was trying to cut my arm off.  I kept screaming that it was broken, but she kept retrying it until I grabbed the nurse and screamed at her to get a different one or I was going to punch her. (Let me clarify, all the nurses I dealt with during my stay were awesome, EXCEPT the two I had during delivery.)

Finally the NICU nurse agreed that we would not feed the baby, but that he would need to be taken directly to the NICU and put on an IV.  Unfortunately, she did not tell any of the other staff that the plans had changed, so I had to argue with them all over again.

This is when I was told that my blood pressure had spiked to a dangerous level and in order to help prevent me from lapsing into a seizure, I needed to be put on a 24-hour magnesium drip and could not drink more than 30 milliliters per hour.  I became irate, because I thought they also said I could not eat & the bowl of cheerios I had 20 hours before did not last that long.  They assured me I could have all the pancakes I wanted in the morning, but nothing to wash it down.

Apparently, magnesium makes you feel like shit and not only did they give me a drip via my IV, but they put a syringe of it in my blood stream and made me take an extra dose in pill form.  I warned them that if I took the pill, I would barf, but they did not care and barf I did.  Not only could I not drink, but I was to remain bed ridden until my blood pressure normalized.  This meant I could not visit my baby in the NICU for almost 2 days.

I thought, since the baby was born and was staying in another room, I could get some sleep, but for the next 6 hours, the 2 nurses on staff tortured me incessantly.  I am not sure what all they were doing.  Poking me with needles, pushing so hard on my uterus to get out blood clots that I screamed, switching types of catheters, trying to do injections but failing repeatedly, and god knows what all, as it was endless.  Finally, the lead nurse said she would let me go ahead and sleep, so I rolled over with a sigh of relief.  This lasted about 2 seconds as she now noticed I still had the tape on my back from the epidural.  This was not just a tiny piece of tape, but a giant sheet of tape that covered my entire back.  She pulled it off in a manner that would make the 40 year of virgin cut a bitch.  This is when I finally just cried and cried.

OK, let’s move on to the baby.  The major worries that we had concerning his birth defect was a twist in the bowels, and if he had a spleen or not.  He was admitted to the level III NICU and put on an IV drip for his sustenance until they could rule out any blockage or potential for malrotation in his bowels.  It was about 36 hours before I could leave my bed and go see him.  He was crying when I first got to the NICU, but the second I held him, he settled down & I knew he was mine.  They did X-rays and ultrasounds; a contrast swallow and a barium enema.  All of these tests came up short, as they just could not see all the way through, so they decided he either did have some kind of twist in his intestines or still had some meconium (first baby poo that looks a lot like tar) that had not yet moved through his system and was blocking the pipes.  The decision was to go ahead and feed him and see what happens. 

They started with an ounce of milk.  Three hours later, they would literally pull the food back out of his stomach via the lavage tube to see if he digested any of it.  It seemed like he was digesting at least some of it, so they continued to feed him every 3 hours and recheck his levels.  24 hours later he was still digesting and creating wet diapers, but the call for celebration really came when he finally pooped.  We had never been so happy to see poop in our entire lives.

Meanwhile, he had another echocardiogram.  It was confirmed that his heart had no major defects, but that he did have a very small hole in his heart called a PDA.  The cardiologist was very reassuring and said this is a common defect that in most cases never causes a problem and often heals on its own.

The piece de resistance came during one ultrasound where they were looking closely at all of his abdominal organs and were able to eyeball a spleen.  That is right; my boy has himself a SPLEEN!!!  I almost fainted when I heard this because we were originally told it would take a special dye test to find the spleen and they would not be able to do this particular test until he was 2 months old.  The fact they could see the little bugger plain as day on the sonogram was a huge surprise and I will always be grateful.

By day 3, my blood pressure was back to normal and I was able to be discharged.  They would not discharge me, however, until we completed the birth certificate.  This was tricky, because I felt strongly that I should get to choose the middle name, since we were giving him the first name of Henry, after Sasha’s father & grandfather who both passed away within a year of each other.  Sasha felt he should get to choose the full name, since I got to choose the full name of our first son (Finn Francis) and to appease him at the time 4 years ago, I did say he could name our next kid.  Despite that, I did go through hell for this kid, getting shots in my butt once a week, going to the doctor constantly, 21 ultrasounds and was diligent about not eating lunch meat or soft cheeses.  Still, Sasha felt like he needed to put his foot down and 5 minutes before we needed to leave, he chose a 2nd family name on his dad’s side: Schuyler (pronounced Skyler).  I had at least talked him out of the name Victor.

Despite the fact that I was now discharged, I was not going anywhere. We were able to secure a family room for one of us to stay in to be near Henry.  They continued to do test after test and were still unable to tell us definitively if he would need surgery or not.  Hours and days passed.  Henry continued to eat and poop.  By day 5, we were moved again, this time to a hospital room we could share with the baby.  This was fantastic news, but also meant that we were going to fully care for him on our own. I took the first shift and felt like I could finally start to get to know this little guy.  The next night I went home to sleep for the first time.  I woke up in the middle of the night having no clue where I was. 

I returned to the hospital the next morning to take another shift with Henry.  I half-heartedly packed a bag, because he was supposed to get another barium enema and I felt confident they would let us all go home after this final test.  Then we waited.  And we waited all day.  Finally, Sasha had to leave to pick up Finn from daycare.  While he was gone, the surgeon came into talk with me about 7:00pm.  What she had to say was not exactly what I wanted to hear.  They STILL did not know for sure if his bowels were free-floating or not, to become blocked at any time.   They could see one part of his intestines were curly-cue where they should be straight and one part they could see was fixed, but in an odd spot.  The second point that was supposed to be fixed, they could just not tell if it was or not or where.

She said the only way she could truly tell what was going on is if she cut him open, took out all of his intestines and had a good look-see.  If she saw any problem, she could fix it right then. She would also go ahead and do an appendectomy, since his appendix was in the wrong place, it would avoid major confusion later in life.  This was worse news than if they just knew something was wrong, because then they could do a less invasive laparoscopic procedure to fix it.  She gave us two options: we could go ahead and schedule the exploratory surgery for the next day or we could take the baby home, establish a routine, get some rest and come back for the surgery in a few weeks.  In a way, I wanted to just get it over with, but was beyond exhausted.  Another straight week in the hospital would have probably been my breaking point, so we opted to all go home.

It was a tremendous feeling loading Henry into the car seat next to his big brother and taking him home for the first time.  We have thoroughly enjoyed getting to know him and he is pretty pleasant to be around.  We had exactly 4 days to be all home together as a family, as Sasha started a brand new job on that next Monday.

The surgery was schedule for Friday, August 26th, but we were first to meet again with the surgeon on the 23rd to go over the game plan.  We took the baby  in and informed her of his mostly normal eating habits.  She took an X-ray and was gone for a long time.  When she returned, she told us that the X-ray showed no form of blockage at this time.  Then she went ahead and changed her tune completely from a few weeks ago.  She said they do not normally do surgery on healthy kids.  They like to wait until something is wrong.  She proposed that we wait until he is one or two years old and by then they would be able to see much better via a scope to confirm any issues and would not need to cut him open.  We knew what to look out for in case a dangerous blockage had occurred and would be able to get him in to the hospital before any long term damage was done.  We could not believe our ears.  Why she did not think of this before, I do not know.  It never really made sense to perform surgery to see if he needed surgery.

I am a huge worrier, and if the baby so much as misses two feeds in a row, I will panic.  It does seem the best alternative, however.  We will see the surgeon again in 3 months to revisit our decision.

We simply cannot believe how lucky we are.  We went from people telling us it was hopeless and we should terminate, to essentially having a perfectly healthy baby, albeit a bit turned around.  Somehow we escaped major heart issues, no spleen or immediate abdominal surgery.  Amazing.  I mean, you can hardly tell by looking at him that he has backwards organs.  The only sign he shows that anything is amiss is that when he poops, it sounds like someone dropped the silverware drawer.



Posted July 13, 2011 by singasongforyou
Categories: Uncategorized

I am still pregnant.  Not only was Finn born by now, but he was already home a week after a near month in the NICU.  What a trip.  The progesterone shots I take in the butt cheek once a week to keep me from pre-term labor are working.  I was supposed to take my last one last week, since now I am considered to term (woo!).  I took the shot one day later than usual and was contracting so bad it scared me.  I decided to go ahead and take one more shot of the stuff this week.  Birthing at 38 weeks as opposed to 37 weeks, seems way better.  If this kid is going to need surgery straight out of the gate, this is not a bad way to delay that violation & give him a little more peace while he can get it.  Me, too!

A lot of people want the baby out by now.  Other than monster heart burn, back aches and feeling like a bowling ball is wedged between my legs, I feel pretty good!  I just really thought I would be pampered more at this stage.  My mother-in-law is coming to visit for the next 10 days in case I go into labor; this way someone will be here to watch Finn when we go to the hospital.  Well, this means the house needs to be cleaned.  You would think someone would vacuum for me or at least scrub beneath the toilet so I don’t have to crouch down there in my condition, but NOOOOOO!

This last shot should wear off around 7/19 and I expect labor will start within a few days after that.  The next you hear from me, the baby will be born & we will know if he will need surgery on his guts or not.  Let’s hope the little bugger’s intestines are fully anchored the way they are supposed to be and he can come home within a few days.

I am a little bit in shock this is actually happening.  It has been the craziest pregnancy, making it easy to forget that a baby is going to be coming out of all this.  I do get to see his blurry face on ultrasound once a week already, and have even seen his belly button and that he has hair growing on his head.  It will be nice to finally be able to gaze upon his face in person, in all its Technicolor glory.

Disclaimer: Not my belly.  Not a real photo.


Posted June 16, 2011 by singasongforyou
Categories: Uncategorized

My butt itches.  The weekly progesterone shots are just one itchy pain in the ass, but it seems to be working as I have made it through 3 major milestones:

I made it past 32 weeks of pregnancy (out of 40), which is when my water broke last time. 

I have just now officially made it to 33 weeks, which is when my last son was born. 

I got to attend my baby shower!  The last one was canceled due to actually having a baby.

Also, I doubled my amniotic fluid.  Drinking over 2 gallons of water a day actually worked, although my own bladder is very upset with me.  Nice to ease up on some of those worries.


All in all, everything is going great.  At my last ultrasound, the baby is showing to weigh just about exactly what Finn weighed when he was born – both were at 33 weeks.  Pretty fucking cool.  I am breathing so much easier, although, not walking well at all.  My center of gravity is so off by this giant, growing tummy, that I knocked my back out of whack and need to wear a prenatal cradle.  I joked about the sexiness of these before, but never really thought I would get to wear one.  I will rock the shit out of this lovely:


Posted May 30, 2011 by singasongforyou
Categories: Uncategorized

I am officially sick of getting Ultrasounds.  Tomorrow I will be getting my 13th one this pregnancy alone.  Let’s hope it is lucky 13, because it is to determine if my amniotic fluid is still low.  It has been low the last 2 times & if it is any lower, they will admit me to the hospital.  I have to confess, this has been a crazy time in my life.  I mean, we wanted another baby.  We wanted a sibling for Finn.  We tried and tried for a year and half.  After finally getting lucky, we of course had worries of a preterm labor like with our first kid, but then were thrown all these other issues.  I mean, backwards abdominal organs?  How weird is that?  It is enough to worry about, but I still have the preterm labor concerns on top of that.  Now with every new ultrasound some new trouble pops up: first low amniotic fluid and now they say my placenta is thickening.  What?

I really want to go all the way with this pregnancy, but I am looking forward to not having to worry about him coming early or not and can just focus on if his intestines are anchored properly or not.

Despite everything, I still feel enormously lucky.  We got a second fetal echo cardiogram that confirmed the findings of the first: No Major Heart Defects!  With all the ultrasounds I have been getting, at least they have not found any red flags concerning trouble with the baby.  Once he is born will be another story.  He will have at least a brief stay in the NICU to get tests to see if his intestines are anchored.  If they are free-floating, they will do a laparoscopic procedure to basically tie them down to avoid them getting all bunched up and causing huge problems.  He will also get another heart scan within 2 days of birth.

There will be about a dozen other tests on each and every one of his organs, but those will have to be performed later requiring many trips back and forth to this specialty hospital.  The spleen and liver test will not be done for at least a month or two, so we will not even know if he has a spleen right away.  The not knowing is going to be difficult and means more worries with each test as we knock each one down and hopefully everything is found A-OK!

I am 31 weeks and every week that passes, I breathe a little easier, because I know the bigger he gets the better chance he will have if he needs to come into the world a little sooner.  But stay in there kid!  I demand cooperation from my bag of waters and my placenta better behave!!


Posted March 23, 2011 by singasongforyou
Categories: Uncategorized

Imagine:  laying on a gurney in a darkened room – Belly exposed and sticky with lubricant – Crying your eyes out in extreme joy because you just got the best news of your entire, sorry life.

We got the fetal echo cardiogram FINALLY got some good news.  We saw a well-respected cardiologist and at first she freaked us by telling us all the really bad things that can go wrong with the heart with this kind of stomach defect and then she said: “But I don’t see that happening here”.  At this stage she can see no obvious signs of a congenital heart defect.  This is amazing news.  Another worry was that the inferior vena cava (the large vein that returns deoxygenated blood to the heart) was interrupted, but she says, from what she could see, it appears normal.  The veins and ventricles she can see all appear to be going in the direction they need to be to the proper places, including 2 to the lungs.  At this moment, she can predict no need for heart surgery.


We are cautiously optimistic, because the baby was uncooperative making it hard to get clear images.  We will get another echo cardiogram in about 7 weeks to confirm her findings.  There are many things she cannot see that can still be a problem for us, like if there is a small or medium hole in the heart, but she was pretty much ruling out catastrophic problems with the heart.

We had no idea what kind of information we were going to get from this test, but ended up getting the best possible news concerning the heart.  We know that we are not out of the woods, but we still feel truly lucky to get such a good report.

Here are some highlights from the report:

Fetal cardiac anatomy is normal.  Cardiac chamber sizes are normal. Ventricular size, wall thickness and function are normal.  It goes on and on about how normal everything looks, then says: Since the fetal heart develops in the first trimester, moderate to major cardiac anomalies can be EXCLUDED.  The Inferior Vena Cava is (and this is a biggie) NOT INTERRUPTED!   FUCK YEAH!!!!!!!!

We can go ahead and celebrate this news about the heart, our biggest worry, but the baby still has a birth defect. Our next concerns are if the bowels are mal-rotated or experiencing a blockage or if the baby has a spleen.  We most likely will not have these answers until after he is born.   Despite this, I need to get new ultrasounds every TWO WEEKS!  We will also meet with a surgeon to talk more about the possibility of bowel mal-rotation and get an MRI to see if we can see any oddities pre-natally.  There is a procedure called LADD’S that can be done to fix the bowels, if this is an issue.  If he turns out to not have a spleen, he would need to be on medications & antibiotics for the rest of his life and could be prone to serious illnesses, like pneumonia and infections. 

In a way, we are back to not knowing what is wrong, but getting to rule out major heart anomalies is a major, very exciting, huge, insane relief.

Thank you so much for all the prayers, awesome vibes, amazing thoughts and esteemed friendship.  Now let’s refocus all this energy and pray to goodness gracious the boy has a damn SPLEEN!



Posted March 17, 2011 by Cloudy
Categories: Uncategorized

I think I need to change the name of my website to something else, because lately it really does feel like the sky is falling.

Since it was exactly one year ago today that I lost my job, I thought it would be a good time to post something to my long neglected website.  Losing my job was a nasty bit of bad luck and then nothing bad happened for a long time.  In fact, in November, something very good happened.  After trying for what seemed like forever, Sasha & I found out we were positively pregnant on Thanksgiving.  I was very paranoid that something would go wrong, being over 40 and all.  By 12 weeks, I felt like we were in the clear and was ready to make an announcement after we got a special ultrasound for older women to check for Downs Syndrome or other chromosomal issues.

The ultrasound was going very well.  The tech was reassuring that everything looked good and the neck fold did not appear to be a red flag for downs.  Then she got very quiet.  She told me to get dressed and left the room for a long time.  Sasha decided now would be a good time for him to go use the restroom and then to get himself lost on the way back to the exam room.  While he was gone, a doctor came in the room and said:  “Usually, the heart and stomach are both on the left side, but here we are showing they are on opposite sides of each other.  We do not know what this means.  You will need another ultrasound in 4 weeks.”  Just then Sasha came back in the room.  I looked at him wide eyed as the doctor explained to him the situation.  Then they whisked me off to my scheduled blood test and Sasha had to go to school.  I was left on my own to try and process what the doctor had said.  What does this mean?

As soon as I got home, I attacked the Internet looking for clues.  The doctor did not explain which organ was on the wrong side.  The best thing I could find on the Internet was called Situs Inversus, where all the organs are an exact mirror image and everything is switched to the opposite side.  In most cases, people live normal lives with this and sometimes never even know they have it. 

About 7:00pm, I got a call from my doctor, who said the radiologists report diagnosed this as in fact Situs Inversus, so I must have heard her wrong when she said just the stomach OR the heart were on the wrong side.  We had to wait for the fetus to get bigger to be able to see more and get a firm diagnosis, so there began a torturous 4 week wait.

The next ultrasound went exactly like the first.  Everything was happy-go-lucky.  We could see the baby moving and even waving to us.  My sister and Sasha were both there with me and we all 3 were very reassured when the radiologist said the heart was pointing to the left, exactly where it should be.  Then again she got very quiet and abruptly left the room.  Then the head radiologist guy came in and started fiddling around with the ultrasound.  Suddenly he says: “The stomach is on the wrong side, this could be a sign of a serious complication for the heart”.  He starts talking to us about getting an amnio, which incited a discussion about termination.  I was completely thrown off and put on edge by this guy.  I was basically laying on a gurney, wearing no pants while he told my husband: “Well, it is your wife’s decision…”:   This time he called what we had Situs Ambiguus. Don’t look it up, the Internet has absolutely nothing good to say about this, including mass amounts of surgery required and 5% survival rate beyond the age of 5 years.

Again, my doctor calls me about 7:00pm and reads me the report.  This time, she mentions the Inferior Vena Cava vessel could be interrupted, meaning bad things for the heart.  It also says there could be an indication that the baby does not in fact have a spleen.  When only some of the organs are in the opposite place, it makes it very complicated for everything to connect correctly.

We are reeling.  What the fuck is this?  What is going on?

Again, we are told we need another scan when the fetus is bigger and this time we are scheduled with a Perintologist, a high risk pregnancy doctor that should be able to spread some light on what we are dealing with.

Another 3 weeks passes.  I am terrified to meet with our Perinatal team, because what they could tell us could pretty much stop my world.  We have a long day of appointments scheduled, including Ultrasound, meet with the Perinatalogist, meet with a Genetic Counselor, and get an amnio.  I was totally throwing up in the morning, not sure if it was morning sickness or that I caught my son’s stomach bug.  The ultrasound was very long and I did not feel well throughout.  We finally meet with the specialist with a LONG list of questions and he proceeds to tell us NOTHING NEW.

He confirms that the stomach is indeed on the right (wrong!) side of the body.  This could mean that all the organs in the lower abdomen are opposite where they should be.  Often the case in this situation is that the baby does not have a spleen.  He gives us a new name: Heterotaxy Syndrome.  He explains that there is a spectrum of complications that come with this very rare disorder.  We need to get a Fetal Echo Cardiogram to see if there are any congenital heart defects.  A cardiologist should be able to see if the blood vessels from the heart are going in the direction they should be or if everything is fucked up.  We probably won’t know about the spleen until after birth, but that is small potatoes next to the heart.

We know that the chances of us getting away without any complications are low, but he is at least telling us it is possible to escape major surgery or even death.  This is what we are holding onto right now.  This is what gets us through the night.

While in line waiting to get the amnio, I felt faint, very faint and then almost fainted.  Sasha rushed me to a chair, where I immediately began throwing up into a waste paper basket in front of all the other high risk pregnant women in the waiting room.  Thus began my week long struggle with the stomach flu, just when I needed my strength the most.  Needless to say, I did not get the amnio.  I still plan to get it, but the specialist said this is rarely caused by a chromosomal disorder.  It is just a rare, random weird thing with no known cause.  Frankly, we would have preferred to win the lottery. 

We have our appointment with a Perinatal Cardiologist on Monday and are hopeful she will finally be able to give us some hard answers.  We are terrified, but holding onto that faith that there has to be some good news in there somewhere.

By the way, we are having another boy, and are making a deal with him that we will fight for him, but he has to also fight for us.


Posted April 12, 2010 by singasongforyou
Categories: Uncategorized


I lost my beloved job last month when some bad people came and stole our helpful cancer tool out from under us.  To add insult to injury, my husband has been out of work since October.  Even though we are in a dire situation, all is not lost – I still have hope that everything will be OK.  We might lose our house, but we still have each other, right?  Um.

I would love to write more and have lots to say, but now that I am suddenly a full time Mommy, my time on the Internet is scarce.  I miss all my friends here and the ease of making new friends via this website.  It is easier to peek into facebook, so please feel free to friend me there (you can find me under Colleen Frary or maybe even colleenfalling) until I can get this place back on its feet.

Love and bubbles!