Friday, November 23, 2012


I was trying to remember some of the thoughts and feelings I had way back before being diagnosed with HA, and remembered the very first blog I started, A Nickel for My Thoughts (because my name is Nicola, get it?  ha ha ha).  Went back to it, and there were a few posts that added more backstory to this blog, so I decided to copy them over here so everything's in one place.  So if you subscribe to this blog through a feed reader or email you might see the posts popping up - they're all from almost eight years ago.  Hard to believe it's been that long!

They start with this one if you're interested in reading through them.

Monday, September 10, 2012

HA and weight. Which turned into my entire ttc history.

I've been thinking a lot about my weight over the past years as I'm putting together the survey for my book.  So I thought I'd post my weight history for as long as I can remember, as I think it's interesting, and perhaps useful for others going through this.  (Note, I'm about 5'6").

I first got my period at age 14.  Kinda late.  It was the summer after freshman year, I was babysitting for a family up in Maine and my best friend happened to be visiting.  Fortuitous if I wasn't going to have my mom around, to have someone else I could confide in.  I have no idea what I weighed at the time.

My cycles were fairly irregular, and I remember my periods lasting FOR.EVER.  Each was at least 10 days of bleeding.  And I never knew when they were coming, although as I think back on it, I feel like it was about every 5-6 weeks or so.

Then at around 18 I started on birth control pills for a short while, but wasn't very reliable about taking them, so ended up with Norplant (the rods that go in your arm) after a couple of years.  Loved it.  Especially loved that I stopped getting my period a few months in.  I think my weight at the time was in the mid 120's.  That was when I was about 20.  In college I started exercising a bit - I'd go to the gym and use the stairmaster (doing the classic - level 10 but holding my weight up on my wrists. ha ha.) and would run occasionally.

The Norplant lasted five years, I met my husband, and we got married.  At some point I had them taken out and went on the pill.  I worked for a few years, then went to graduate school.  And this is when I really started paying attention to what I weighed.  I guess over time my weight had gradually trended upwards until I was sitting at about 139 in grad school.  Which was fine, but I was never particularly happy with my love handles and the bit of cellulite I had developed.  Went on a few "diets" but could never be particularly consistent about it because I just loved food too much, particularly junk food.  If I could be healthy and live on chocolate and chips I totally would!  During this time I became much more active than I had ever been before - started playing ice hockey a few times a week, volleyball, weight lifting, squash - I loved being and feeling so fit!

Then, some of the post docs in my lab whom I hung out with a lot decided they needed to lose some weight.  And I thought I would join them. Finally get rid of those love handles, and "get healthy" in preparation for having a baby.  Because I'd seen so many places that if you were overweight you should lose weight to be more fertile, and so I figured that was true for me too.  They were men, quite a bit bigger than me, and were aiming to eat 1500 calories per day.  I figured that would be a good goal for me too, as I was smaller than them but exercising more.  So I started an Excel file (I have one for everything!) where I would track my calories for each day.  With all the exercise I was doing, my net calories were around 7-800.

And I lost weight.  BOY, did I lose weight.  I think I lost 12 pounds in the first month I was doing this, then a few more after that.  Which got me down to my low weight of 120.  It was so addictive seeing that number on the scale go down!  I loved how I looked (I had a six pack! and you could see the vein in my bicep!)  And then I went off the pill because we decided we were ready to have a baby.  And my body just laughed at me.

I went to see my PCP, and then my OB/GYN.  Eventually I was diagnosed with HA, and my OB did tell me to cut down on exercise.  I had gained back to about 133 by that point, but still no period.  This was about six months after going off the pill.  Then went to see an RE, who was very doubtful that I would either start to cycle on my own or that Clomid would work for me.  Up to 136 (Jan '05).

Two months later I got my period while on vacation! Had a couple of ultrasounds after I got back and had a 14mm follicle that didn't grow in two days.  So we started on the injectable/IUI rollercoaster.  Over that period my weight kept going up.  Four BFN cycles (just reread all my archives - had forgotten how hard it all was).  Gained some more weight up to about 140lbs (yes, back to where I started!).

After the four BFNs we were going to move on to IVF, but not for a couple of months because of insurance.      Decided not to take bcp until we knew what our IVF schedule was.  Amazingly, ovulated on my own in 12/05 and got a BFP!!  143 lbs at the start of my pregnancy.

Gained 17lbs by 30 weeks and then another 20 in the last 10 weeks (mostly water), for a grand total of 37lbs and final pg weight of 180.

By six months postpartum was back down to 136 - could have gone lower but didn't want to for fear of having HA again.

Didn't get HA, started cycling naturally at 11 months postpartum, BFP on my third cycle trying (using progesterone to lengthen my LP from 8 days to 14+), starting weight for this pregnancy was 136.

Gained a total of 25lbs, final pg weight of 161.

Again no trouble losing the pg weight, got down to about 128 before deciding once again that I didn't want to lose more in case we did decide to have a third child, once again didn't want HA.

Started cycling naturally at 10 months postpartum.  Started trying for a third child at 18 months PP and got pregnant on my first! cycle.  Starting weight of 128.  Found out our baby didn't make it at 10w.  Had gained up to 133.

Lost that over time, kept on trying for a year, finally moved on to IVF.  Lucky enough to get a BFP on our first cycle.  Starting weight 127.

Gained a total of 30lbs this time, to 157lbs.  Lost 10lbs by delivering Truffle, lost another 10lbs by a week later, and then have been losing about a pound a week since.

And now we get to the real point of this post.  I'm now down below my pre-pg weight, at about 125.  And given that we're probably not going to have another child, I'm finding that my motivation to keep my weight up is somewhat lacking, and in fact, there is a not insignificant part of me that is once again liking seeing that number going down.  Amazing that it's still there after all these years.  I have been trying to add in some more snacks so that I dont' lose too much more weight, I think this is a good place for me to be especially as I'm not exercising that much any more.  But still.  I think it's something that those of us who got ourselves in the way of HA will always struggle with to some degree.  We can push those thoughts away for the most part, but not completely.

Have you been able to completely banish them?

Monday, August 06, 2012

Hypothalamic Amenorrhea BFP update

I posted a summary of the stats I've been tracking for HA pregnancies from the Fertile Thoughts Hypothalamic Amenorrhea thread last year.  Figured it was about time I updated!  So here are the data including the additional year.  The overall percentages haven't changed by much. However, when you look at just the pregnancies since my last update (109 in total, see below), there are some interesting trends. 

First, the grand totals:

Pregnancies:  361

First post-HA pregnancy: 279 pg
Natural: 72 (26%)
Clomid: 82 (29%)
Clomid + injectables: 6 (2%)
Injectables: 68 (24%)
IVF: 45 (16%)
Other: 6 (2%) - GnRh pump (2), adoption (3), zoloft (1)

HA vets - subsequent pregnancies: 82 pg
Natural: 63 (77%)
Clomid: 4 (5%)
Injectables: 7 (9%)
IVF: 7 (9%)

m/c rate: 19%

Total pregnancies in the past year: 109

First post-HA pregnancy: 83 pg
Natural: 14 (17%)
Clomid: 31 (37%)
Injectables: 19 (23%)
IVF: 19 (23%)
GnRH pump: 1

HA vets - subsequent pregnancies: 26 pg
Natural: 20 (77%)
Clomid: 1 (4%)
Injectables: 1 (4%)
IVF: 4 (15%) - three with first from IVF, one with first two natural (that would be me!)

19 miscarriages, for a m/c rate of 17%. 

So there are a couple of interesting points in comparing the overall data with those from this past year.  First, Clomid usage seems to have increased quite a bit - perhaps because people have seen that it does work quite well with HA and are more likely to try it?  Second, that the number of people doing IVF has increased quite a bit as well.  My impression is that it's due at least in part to the high cost of injectable cycles, with people thinking they'll get more bang for their buck (higher success rate) with IVF.

It's not statistically significant, but in this past year the miscarriage rate (per cycle) from IVF was 27% (6/19), as compared to right around 15% for pregnancies that were natural (5/34), from Clomid (5/32), or injects (3/20).  Of those who miscarried after IVF (four women), one became pregnant naturally, one with Clomid, and one on a combo natural/FET cycle (with twins so both the natural and FET originally implanted, but subsequently lost one).

1. First post-HA pregnancy is not necessarily a first pregnancy as some develop HA after having a child already due to overexercise / underfueling.
2. I have grouped Femara and Clomid (including the extended clomid protocol) together in these stats
3. Due to miscarriages, some people are represented multiple times
4. Injectables is usually Menopur as with HA we need LH in addition to FSH to have the best response to injectable cycles. Some people have used FSH + hcg or Luveris. FSH alone is more likely to lead to cycle cancellation.

Hypothalamic Amenorrhea book!

I stopped working about a month before little C was born.  I had been working two days a week for a pharmaceutical company, managing testing for clinical studies.  It brought in a paycheck and got me some adult interaction that definitely helped me be more patient on the days I was home with the kids - but the job itself wasn't particularly fulfilling.  Didn't make any use of my PhD, it was mostly just organizing and staying on top of samples and labs.  Good for then but not a long term career.  So there was no question for me when C arrived that I would look to go back - maybe eventually, but not for at least a year.

I have toyed with the idea of going back to school - med school specifically, with the idea of becoming a reproductive endocrinologist, and getting to help women get pregnant, because I have found through my years posting on this blog, and even more so, on the hypothalamic amenorrhea thread at Fertile Thoughts, that the joy I get from supporting women in their quest to become mothers is incredibly fulfilling.  But honestly, med school?  Who am I kidding?  I'd have to take the MCAT again, and while I did well on it when I took it, gulp, 15 year ago, I'd need to do a lot of studying to get  back there.  Then four years of med school, residency, an OB fellowship and then a RE fellowship - I'm looking at being around fifty before I'd be done.  And yes, I could do it - but I think that it would come at a high cost to my family and I just don't think that is the right road to take.

So I've been mulling over what I could do instead.  What could I do to continue to help women with HA achieve their dreams to become mothers?  Get the message out!  It does seem that magazines and other blogs are starting to talk about how overexercise and undereating, particularly in combination, are not as healthy as we have all been led to believe they are, and are particularly detrimental to fertility.  Finally!

What I think I can add to the conversation, and would be worthy of writing a book about, is data about HA from the large cohort of women who have posted on the fertilethoughts HA thread over the years.  I have collated information on 325 pregnancies to date, and I'm sure there are more from "vets" that I am unaware of.  So my plan is to put together a comprehensive survey and ask those women (and perhaps others who might find such a survey through my blog or other places I advertise) for a bit of their time to help put numbers on things like the amount of time it takes to get cycles back naturally, the likelihood of pregnancy at different BMIs, what changes in exercise habits they had to make, that kind of thing.

I have a basic outline put together, and will post that  soon, which will include the questions I'm trying to answer with my survey, and the various topics I think are worth covering (questions that come up time and time again on the board).  I'd love any feedback you have to offer, now and when I post those!

Tuesday, May 01, 2012

Birth story part 2

Part 1 here...

We were let into the labor and delivery unit, and sat in the front hallway for a few minutes while they got things ready for us.  Then back to triage.  Again, waaaay more relaxed than with Timmy's labor, as by the time I got dressed in the hospital gown with him and up on the table I was ready to push.  This time, (actually I'm not sure it was better!) I got to answer a zillion questions and get hooked up to monitors.  Sat and 'relaxed' for a while as they got a good trace on Truffle and my contractions.  It was somewhat hard to do sitting up in the bed; better once I had Mark put the head of the bed down a bit.  My uterus was being too squished when I was more upright, very uncomfortable.

The on-call doc came in after about 15 min, and I asked if we should start the IV antibiotics for the GBS.  She agreed that would probably be a good idea, so that got started maybe 10-15 minutes later.  Contractions were somewhere between 1-3 minutes apart, and 30-50 sec long.

My sense of what happened in what order is a little spotty, but these are some of the things we discussed... Doc talked about checking my cervix; I asked if that might cause any issues given that my water had broken and I was GBS positive.  She said probably not as we were starting the antibiotics already.  But she didn't end up doing it in triage.  They confirmed again I was not planning on an epidural, we discussed that we didn't want the eye ointment or Hep B shot, no circumcision for Cameron.  Also that I had signed the forms 'consenting' to a vaginal birth and a VBAC.  Funny that you have to consent to those :)

After what seemed forever, we finally moved down to the delivery room.  They asked if I was okay to walk, and I figured, "why not?".  So I did.  I think I had to stop walking with the contractions, but was still getting through them fine, just closing my eyes and releasing as much tension as I could.

In the delivery room, I got hooked up to monitors again, and then repositioned when the nurse realized how I was going to lie down (in the position recommended by the Bradley method - on my right side, left leg bent and supported by a pillow, left arm supported by a pillow, and right arm behind me.  She asked if that was how I slept and I said yes - didn't really want to get into it.)  Somehow I remember it feeling much more comfortable when I did it at home when I was in labor with Timmy, on our waterbed :)  Still able to relax through the contractions fairly well.

More people came in to talk to me - the anesthesiologist, who said that they fully supported a natural birth, but she wanted to get consent for other forms of anesthesia just in case, so I had to sign a form for an epidural, spinal, or general anesthesia, depending on what might happen.  I was rather amused, they kept talking to me and I would have to say, "hold on" while I was having a contraction.  (Timing them on my phone all along, it was actually a nice thing to have to focus on).

The on-call doc came back, and said they didn't need to check my cervix right away because they would use the 1cm I was dilated at my morning doctor's appointment as my baseline.  She was also talking about how often when someone's water breaks labor doesn't really get started so they might need to use pitocin to get things going.  And they would check me in a few hours and see how I was progressing, and maybe if I wasn't too far along they would give me some pitocin.  I didn't bother to say at that point that I'd rather not, I figured we could cross that bridge if we got to it.  I found it very amusing that she was telling me I wasn't in labor when my contractions were about a minute and a half between, and 40-60 sec long.  I think this was maybe around 3am, so about an hour after we had arrived.

Finally, everyone just left me alone, and I was lying on the bed, doing my best to keep relaxed through each contraction.  At about 3:20am I really had to pee, so got up and went to the bathroom.  I stopped timing for about 25 minutes at this point, which included going to the bathroom and having them put the cordless monitors on me.  I guess so I could move around, although I wasn't really able to do much of that.  During each contraction I was leaning over with my hands on the bed and relaxing my stomach as much as I could.  I don't think it actually took 25 minutes for all that, I think I just got so wrapped up in the contractions I forgot to start timing them again.

When I did start again around 3:45, the contractions were 1:00-1:20 long, still with about 1:30 in between.  I found at this point that I was struggling to get through them without tensing up, so I told Mark that one thing I had wanted to do but never got around to was downloading the Enya song I really like, and asked him to do that for me.  I had been singing it to myself in my head, but thought that having it to really listen to might help me focus on something else.  Of course Mark had never used itunes before, so he was trying to figure it out on the fly. After a few minutes he got it, and then read through the list of Enya songs that came up to see if I knew which one it was.  I didn't know the name off the top of my head, but when he got to it, ("Only Time"), I said "yeah, that's it". I actually did think about getting an epi at this point because I wasn't sure how much longer I could make it if the contractions were going to be this intense.  (for those versed in Bradley, classic transition thinking! and I guess that only lasted about ten minutes, not bad)

When he got to the point though of actually purchasing the song, I told him to hold off, because I wasn't sure, but my last few contractions had felt like I needed to push.  I was a bit taken aback, not really sure why - but I just hadn't felt like I was there yet.  At this point, the last few contractions I timed were 1:10-1:30 long, with about a minute in between.

I told Mark I thought I might need to push.  I guess the nurse heard and called the doctors, because people started filing in within a minute or two.  I felt like I needed to pee again, so got up to do that right after the last contraction I timed which ended at 3:58am.  It was clear when I got to the toilet that yeah, I needed to push.  I peed, and said I needed to poop as well, but they told me not to.  I guess they didn't want me having the baby on the toilet.  *grin*.  I did try once to go, but don't think I managed.  When I got back to the bed, they checked my cervix.  They said I was only 7cm, 100% effaced, and 0 station.  I heard Mark asking what that meant, and they said that the baby is right there ready to come out.  Fortunately they didn't try and make me wait, but said I could go ahead and push.  (Which I was somewhat surprised at!)

So I did.  When Timmy was born, my pushing contractions were right on top of one another so I felt like I barely had time to take a breath in between, so I had purposely read up in the Bradley book on what they recommend for pushing.  You're 'supposed' to take a deep breath when the contraction starts, let it out, take a second, let that out, and then push, so that you're working with the strongest part of the contraction.  I actually was able to do that this time - and apparently it was rather effective, as he popped out with the third contraction (I would say two strong pushes with each contraction).  Mark and the nurses were telling me on the third one that he was almost there which was a big help, as I was able to use that as motivation to keep on pushing.  That last one hurt!  He was born at 4:10, with about five minutes of pushing.  wow.

I definitely pooped with the first pushing contraction, but it was a non-issue (I certainly wasn't going to do anything differently!), they just wiped it right up and put something down there to cover that area, probably to try and keep things somewhat sterile.

When Cameron popped out, what a feeling.  After the head and shoulders, the rest of him just slipped right out.  I asked if we could wait on clamping the cord, but it was already done - it was wrapped around his neck so they needed to get it off ASAP.  His apgars were 8 and 9, and then they brought him right over to me.  I was a bit shaky, I guess from the intensity of the last few minutes of work!

I had a first degree tear, but the docs were happy to wait until I was ready to stitch me up. They also waited until I felt ready to deliver the placenta, also different from Timmy where they pulled to get it out ASAP because I was bleeding more than I was supposed to.  Yet another part of the labor that was more relaxed this time around.  That was interesting, the contraction wasn't nearly as intense as they had been for a while, but it was also a strong sense that I *needed* to push.  So after the placenta, they did the stitching, I think they said about six stitches in my perineal area, where the old scar was.  Once again, the lidocaine shots were more painful than the labor, or maybe it's just that they were a sharp kind of pain versus the intensity of the contractions.  I felt like the stitching was way less uncomfortable this time though.

And then we were done, and I got to hold and snuggle my new, perfect little boy.

Sunday, April 29, 2012

Updates on little C part deux.

Day 2, Thursday:

In the NICU, the whole team of doctors goes and visits each patient every morning, they go over the case, any new findings, and come up with a plan for the day.  I unfortunately missed most of it when they were going over C because I had gone upstairs to pack up my stuff and get discharged.  The upshot was that they had put in for some additional consults; genetics and opthalmology, his repeat CBC showed that his hematocrit was down so they were going to start weaning him from IV fluids and I could start nursing when he was hungry, yippee!  The head neonatologist also said that he wasn't convinced it was the hematocrit that caused the incident the night before, he generally didn't think that there was anything wrong with C, it was just a random isolated incident.

So we got to nurse again around noon, which lasted until 12:30 or so, then I headed out to get lunch.  In the meantime it was a zoo here!  The geneticists came around to check C out, and based on a cluster of observations (ACC, he has a small chin, triangular toenails, long toes, somewhat funky ears) they wanted to do some genome DNA testing to determine if there is an insertion or deletion in his genome somewhere.  They also felt that based on the cluster of "symptoms" he has, it was worth doing an EKG to get a baseline and rule out any issues there, as the heart is often affected to some degree if there is some kind of syndrome.  So that was added to the list of tests as well! phew!

We said fine to the testing, but honestly I don't think it's likely to change anything we do.  More for interest's sake than anything else.

After the geneticists, and once again right when C was scheduled to be taken down for his MRI (finally!), the neurologist showed up again to do a repeat exam.  No changes, so still a good report there.

DH and I ate lunch while the MRI was completed.  The rest of the afternoon was fairly boring, although we did find out the results of the kidney ultrasound, which were that there was significantly less dilation than had been seen in utero, classifed as mild now instead of moderate.  They still want to do some followup tests in a month or so, but felt that at this point there is now no need for prophylactic antibiotices (to avoid UTIs which can be common if the dilation were to have remained moderate), so it seemed like getting to actually pee outside the womb was a good thing.

So C nursed at noon, then again at 2:30.  In order to get him off the IV, we needed to start weighing him when he nursed to make sure he was getting adequate intake.  So for the next session he was weighed pre and post, and took 22mL.  They were looking for him to take 40mL + (1.5oz approx) every three hours, and then they could turn off his IV.

I went home for the first time, to see A&T and pick up a few things.  It was nice to see them, and they were very happy to see me. Well, A was, T was watching TV with his uncle which meant he essentially ignored me :)

Nursed C again when I returned to the hospital, amazingly he hadn't woken up while I was gone, I was expecting that he'd need to be fed at least one bottled, this time he took 26mL.

Day 3, Friday:

Three nursing sessions in the night, 40mL, 40mL and 48mL, so we could be off the IV!  That was confirmed during am rounds.  Which I missed once again as I was out having my breakfast, and they did the kids out of order because one of the nurses wasn't available.  Sigh.  We got re-updated on the kidney ultrasound results, informed that the opthalmologist and EKG were to be done that day, and that they were a little concerned about C's jaundice.

Not much of note happened in the am, just some nursing and sleeping.  We still hadn't heard anything back on the MRI which we were getting antsy about!  Oh, and C's bilirubin levels had come back and had jumped from a 9.8 on Weds to a 16.8, so they decided that phototherapy was a good idea, and also mentioned that the high bilirubin could be causing C to be so sleepy.  (I think at this point he'd been "awake" for a grand total of about 1.5 hours).  So the plan was for me to nurse him, then we'd start the phototherapy right after that.  I left the room a couple of times while C was sleeping to go have lunch, we are not allowed to eat in the NICU rooms, but the lovely hospital lunch I had ordered hadn't arrived yet.  I was *starving*!  The boys and DH showed up at around two, not long after I finished nursing and C was put into his little spaceship.  (In fact what I was doing at the time was lying down on the cot they have and inserting a suppository for my hemmorhoids LOL.  Fortunately Mark was able to hold them off from coming behind the curtain while I finished up, not something I really wanted them to see - boy, the questions!! :))

They were extremely interested in all the stuff in the room - they loved the shades with chains to pull them up and down, very interested in all the buttons, T especially loved the handwashing sink which had footpedals to turn the water on.  I took them out to share my lunch with me which had finally come, and while we were gone the next hoard of doctors showed up - amazing how all the specialists manage to come at the same time!  Another neuro exam (normal again), the ekg tech, and the opthalmologist all at once!  We would get the ekg results later, the opthalmologist said that his eyes looked structurally normal, the only abnormalities he could see were some very small "cataracts" at the outside of his lenses that he thought would likely not affect vision in the least, and some hemmorhaging on the retinas.  We thought that could be related to birth trauma, and he actually came back in a few minutes later to tell us about a paper he had found where all newborns at a hospital were examined, and about a third had retinal hemmorhaging - 75% of vacuum assisted births, 30% of vaginal, and 7% in C section births.  Strongly supporting the idea that this was nothing to worry about.  (he had us a little concerned by the way he prefaced telling us the results, that sometimes things were noted on exams that could be a bit scary sounding...!).  So we took that as generally positive news as well - but yet another followup!

After all that hustle and bustle, the nurse suggested I pump and we bottle feed C so that he could spend as much time as possible under the lights.  So I did (got 100mL this time!!!!!) and then while C was napping under the lights, the boys, DH and I went out for dinner.  During dinner, two different neurologists called to tell us about the MRI results - GOOD NEWS!  They did not find any additional abnormalities, just the missing corpus callosum.  And in fact they did see a few fibers crossing between the two hemispheres, that were apparently what should have turned into the CC but didn't.  So they were pleased to see that as well, because they felt that it was better that the CC just didn't develop, vs. having developed but then been destroyed somehow.

DH took the boys home after dinner, and I went and hung out with C.  He was weighed again (the NICU isolette actually had a built in scale, so we could weigh him directly in there - you lift the baby up and tare, then put him down and weigh, then lift up again, I guess for confirmation.  Pretty cool) and came in at 7lb6oz, so down only two from birth!  I guess the combo of IV hydration + my milk already being in meant that he was already gaining weight again).

When I got back to the room there was a doc there, and she told me that the EKG was overall normal, but that there is a very small hole in between the two ventricles, called a VSD.  She told me that it's something that a lot of kids have, and it normally closes on its own over time.  So yet another followup appointment!

I had a couple of friends come over for the evening to keep me company, which was nice, as C had to be under the lights.  I did take him out to nurse him, so they got to hold him for a few minutes.  They noticed that when they were holding him and I was speaking he was very still and quiet, but when it was the two of them talking he was more fidgety.  Interesting!

The nurse fed C his bottles, so I got a nice six hour stretch of sleep that night.

Day 4: Saturday

Our hurdles today were a car seat test (normally just required for smaller infants, but because of the apnea episode, they wanted to check that he didn't have any trouble breathing in his carseat.  The nurse actually really liked his seat (the Br!tax Companion) because it did not put him at an angle that would lend his head to falling forward.  And he passed the test with flying colors.

Last hurdle was another bilirubin check at noon.  They were looking for it to have gone down from the 16.8 the day before. It had, but barely!  Just 15.8.  They did say it was okay for us to go home, and just went over the warning signs of severe jaundice with me.  (Lethargy, no peeing or pooping for 8 hours, lack of interest in food).  Told me that it wasn't okay to wait for our first pedi appointment until Tuesday, that we should either go today or Monday.

The rest of the family arrive at about 1:30, and we were all ready to go - of course as usual it seemed to take *forever* for the paperwork etc. to get done, so we didn't get out of there until 3:30, when we were all feeling quite antsy.

So all in all, quite a few adventures, but really, mostly good news aside from a few minor issues that probably happen in lots of kids but no-one knows because they're never checked.  But here are all our followups:

Regular pedi apt

We're going to be busy in the next month!

Day 5: Sunday

So nice to be home!  C is nursing really well, every 2-3 hours, and I feel like he's doing a pretty good job of emptying me on at least one side, so based on how much I was pumping, that means he's getting probably around 50mL per session, which is great.  I have been weighing his diapers, he had 8 diapers today, all of which had pee and poop, and they weighed an average of 47.5g (confirming the ~50mL per nursing session, as generally what comes in goes back out).

Saturday, April 28, 2012

Update on little C.

Our post-birth hospital stay has been somewhat more eventful than with the other two boys.

Day 0:

Little C was born at 4:10am on Tuesday 7lb8oz, 20.5".  We weren't able to do skin to skin immediately because the cord was wrapped around his neck, but he was given to me pretty quickly.  We made a first attempt at nursing sometime between 5 and 6, after they'd finished sewing me up and I'd delivered the placenta.  It went okay, we were able to get a decent latch, but he didn't suck all that much.

After that, he slept and slept and slept.  The pediatrician came by to do a newborn check, and he passed with flying colors.  But, in the midst of her exam, he threw up a whole bunch of clotted greenish brown stuff.  Thank goodness she was in the room at the time, it would have freaked me out!  They took the clothes away for some testing, and found that it was blood, most likely ingested during delivery.  Also a likely cause for him not wanting to eat much, as his stomach was already full!  That was probably around 10 in the morning.

The neurologist team (attending, fellow, resident, med student was my impression) came by to examine him, and all the reflexes and things they checked were also normal.  Also good news :)

A few checks of his temperature were on the low side, so we did some skin to skin, and after that didn't work, he had to go under the warming lights.  As he was not eating often (we did attempt a few times, but he was just fast asleep), the nurse suggested that I pump and we try and syringe feed him.  So I did, and amazingly got about 10mL out of each side!  I had no idea there was that much colostrum in there; everything you read says it's very small amounts. They checked his temp, and it was low for the fourth time, which they found concerning.  Particularly because I was GBS positive and did not get the full dose of antibiotics, they wanted to be proactive in treatment, so decided to start IV antibiotics.  Apparently in infants their temperature goes down with an infection rather than up, who knew!  We syringe fed him while they were putting the IV in, which really helped calm him down (although he really was a champ through the ordeal, barely made a squeak!).  They also took blood to do a bacterial culture, complete blood count (CBC) and blood sugar (which was low).  He took a total of about 8mL.  He finally woke up again around 11:30pm and nursed reasonably well.  CBC came back with low platelets but otherwise normal.

(funny, I'm already having trouble remembering some of the sequence of events!)

Day 1, Wednesday:

Started out relatively uneventful.  We syringe fed C again at around 6am as he still hadn't woken up again, took ~6mL.  FINALLY at noon he seemed hungry, so I nursed him.  We also had the kidney ultrasound scheduled at 1pm, so it was perfect timing.  Of course, when it rains it pours, and right before the nurses and DH were taking C to the ultrasound, the neurologist showed up to examine C.  He also didn't find anything that concerned him.  More yay.

DH said that C was actually awake most of the way down to the ultrasound, but nice and cooperative, and they were able to get the images they needed.  Unlike in the OB office, you don't get your own monitor to watch, and the u/s techs aren't supposed to tell you anything, so all he managed to get was that the one kidney was measured at 4.73cm.  (I had no idea kidneys were so relatively big!)  Didn't see them measuring the dilation at all.  So that test was finally checked off the list.

After that, C nursed nicely from 2:30-3:30 (with Uncles J and K visiting, that was mildly awkward for me, lol), 4:50-5, 6:30-6:40.  At that point I wanted to take a shower, so I sent him off to the nursery.  DH was home with the other boys, and I didn't feel comfortable leaving Cam alone in the room (the bathroom was right there, but still I couldn't necessarily hear him if he started crying, or hear if someone else came into the room).  When I was done in the shower I popped over to the nursery to get him, and found that they were in the middle of his antibiotic infusion.  He was acting hungry again, so I nursed him from 8:30-8:40 or thereabouts.  Afterwards he needed to be weighed, so the nurse took him and got that accomplished.  (7lb1oz, so a drop of about 5%, not too bad).

When she was dressing him again, all of a sudden he turned a funny color.  She mentioned it, I agreed, and asked if he was breathing.  She responded, "NO", and immediately picked him up and went to get oxygen.  She sent me to get another nurse, fortunately there was a nurse and a pediatric resident right outside the nursery door.  DH was asking later, why did she send me to get help rather than pressing a button or something to call people - my friends suggested maybe she just didn't want me to see anything further!  By the time I got back in there with the other two he was looking pinker, but still taking very shallow breaths.  Within another 30 sec to a minute he was back to normal again.  Thank *goodness* it happened with the nurse right there!

They then paged the neonatologist on call, who was there within two minutes.  He took a brief case history, and told me he would talk to the NICU team to decide where C should go, because clearly it wasn't safe at that point for him to be in the room with me in case another incident occurred while I was sleeping.  He thought that C would probably go to the "special care nursery" with full time monitoring by a nurse, but when he returned he said that given the ACC (agenesis of the corpus callosum), and the fact that his blood sugars and temps had been low, they would feel more comfortable with us going to the NICU.

While they got him prepped, I went back to the room to grab some stuff and to call DH and let him know what was going on.  I couldn't get it out without sobbing; once that started I made sure to let him know the most important thing - C was OK!  I can only imagine how scary it must have been for DH, getting a call from me where I started to tell him about C and then burst into tears!  I eventually managed to get it all out.  It really was absolutely terrifying seeing C go that funny color and realize that he wasn't breathing.

When we got down to the NICU they immediately wanted to run some more tests, which meant more heel pricks for poor little C.  Another CBC, a chemistry panel to check on kidney and urine function, and another blood sugar.

The CBC results showed a high hematocrit (red blood cell marker), so the attending wanted to start Cam on IV fluids (nutrition and hydration) - the thought was that the excess red blood cells could be making the blood thicker, harder to get where it needed to go, which could explain the sleepiness, low blood sugar, low temps, and potentially the apnea.  It was nice that the IV line was already in from the antibiotics, so they could just start pushing fluids.  And then we finally both got to go to bed!  Actually not true, I pumped again (40mL, around 1.3oz), THEN got to go to bed.  But because he wasn't nursing I got a decent six hours sleep before I got up to pump again (up to 2oz).  I already felt like my milk was coming in so I wasn't worried about my supply!

Days 2+ coming!  (This is getting a bit lengthy!!)

Friday, April 27, 2012

Birth story Part 1

I feel like things got started at my doctor's appointment Monday morning. We had a biophysical profile done, which Truffle passed with flying colors - it sounds like the hardest thing for a lot of babies is the practice breathing, which he had been doing at every u/s since 31 weeks, so we got those points almost immediately. Kidneys were slightly more dilated, but still not affecting the structure, so the doc saw no need to move up the planned induction date (Monday 4/30). After that I saw my doc, we talked about what the plan for induction would be, and she wanted to check my cervix to give us an idea of how that might go. At first she said, 'closed, 50% effaced, and soft'. Then she shoved her finger in and said, "OK, 1cm".  And that, my friends, was the beginning of the end :)

When I got home after that, I hung out on the couch for a while playing a phone game, and noticed a few contractions somewhat more uncomfortable than I had been used to. I started timing them, but they were pretty inconsistent - some were five min apart, some fifteen. Got up after a while to do some stuff around the house and they went away. I continued to feel them intermittently during the day, mostly while sitting down, not so much while up and about.

In the evening, DH and I finished putting up the valances in Truffle's room, and then I cleared out all the boxes and other junk that was still in there.  After that I went downstairs and we started doing dishes and cleaning up.  A bit later than I had wanted to get to bed, but that's about par for the course.  I had been feeling some contractions here and there, but when I timed them they were still all over the place.  When we were almost done I was standing in the kitchen and felt a sharp pain in my cervix, which made me go "oooooooh", and then a big gush!  Classic!  If I hadn't been wearing a pad from the cervical exam there very well could have been a puddle on the floor.  It was enough to completely soak the maxi pad, as well as my undies, and a bit got on my pants.  Time was approximately 12:35am.

Well, that did it.  I immediatly started having contractions, timeable, lasting about 20 sec each with 1:45 in between.  I knew we needed to get to the hospital in relatively short order to get the antibiotics started for the GBS - plus we were hoping not to cut things quite as close as we had with Timmy.

Called my mom first to have her come over to stay with the kids, then my sis, who had wanted to be in the room when Truffle was born.  Unfortunately she had a raging sore throat and knew she had a cold coming on so not a good idea.  Made us both sad, I was looking forward to sharing the experience with her.  Finally, I called the baby hotline and let them know my water had broken, and they agreed we should come on in.

We got our toiletries together, packed the last few things we needed, got lunch ready for the kids to take to school the next day, walked my mom through everything she would need to know, and were in the car at 1:38.  Contractions were still 20-30sec long and 1:45 apart. (So the start of one ctx was 1:45 after the end of the previous one).  I was still able to easily walk and talk through them.

The car ride was much more calm than when T was born, when I was into transition.  I was texting and posting a couple of messages in between contractions, I did have to start to close my eyes and consciously relax through them, they had lengthened slightly to 30 sec, and about a minute thirty in between.  (contraction timer apps are so cool, especially to a data freak like me!)  We arrived at the hospital at 1:59am.

(Side note - I guess I was probably right when I was in labor with T that my ctx were 20-30 sec long and 2-3 min apart when I started really contracting.  I always wondered based on how quickly things went after that if I had mis-timed them, as I was just counting in my head.  Really does go to show that they don't always NEED to be a minute long to be doing something!)

To be continued...

Wednesday, April 25, 2012

He's here :)

little C was born at 4:10am 4/24/12.  So yeah, fast labor!

More coming soon :)

Tuesday, April 24, 2012

baby day!

dh and i were doing dishes and getting things tidied at about 1235, when all of a sudden i felt a sharpish pain in my cervix, i said, "ooooh", and next thing i knew, a big gush of fluid? fortunately i was wearing a pad as my doc had done a cervical exam in the am, andhelped me go from closed to 1cm. pants still got wet tbough.  anyway, ctx since then have been about 1:45 apart, lasting 20-30 sec. so we"re on our way to the hospital. expect truffle will be making his appearance in the not to distant future :-)

(posted from my phone, hence the typos)

Friday, April 20, 2012


Well, who would have thought, three short months ago, that I would have made it past my due date? I certainly didn't.   But yet here we are.  40w2d today, and no signs of a baby being imminent.

I've gone through a lot of emotions since we found out baby Truffle is missing his corpus callosum.  Three weeks ago, people were asking me if I was excited to meet him and I found that I couldn't honestly answer yes.  Just too many unknowns, what-ifs, thoughts about how different our lives may be from what we had hoped / imagined.

But now that we're here, at the end, I find that I am able to let all those worries go - and I'm just looking forward to meeting our last little boy.  Looking forward to labor, delivery, getting to hold and nurse him for the first time, and SO much looking forward to introducing truffle to his brothers.  They are on pins and needles waiting for his arrival.

I will definitely keep you posted!

Tuesday, April 03, 2012

Recovery from restricted eating.

This is a really excellent blog post on recovery from restricted eating.

I think for many of us who are/have suffered from hypothalamic amenorrhea, even if we didn't have an eating disorder per se, we certainly had disordered eating.  Restricting to a certain (too low) number of calories, avoiding fats, eating an extreme amount of fiber - all behaviours that we have been told are "healthy", but taken to an extreme definitely become unhealthy and detrimental to not only our fertility, but in many cases our lives in general.

One thing that has been a common theme in the posts from women who have recovered from HA on the fertilthoughts forum, is how much more enjoyable their lives are when there isn't an unhealthy compulsion to get to the gym *every* day no matter what, how much freer they feel when allowing themselves to enjoy eating and not worry about every single extra calorie that goes in.

And also, how everyone worries that their weight will balloon out of control and they'll go from one end of the spectrum to the other.  It doesn't happen - our bodies have a happy weight, and even when you eat a lot more than you're used to, it seems to somehow settle there - and at that happy weight, things like hair, nails, sex drive, and fertility are all markedly improved.

This article provides a lot of food for thought - even if some of the references to an eating disorder don't fit, there is much in there that rings true for me.  Worth a read!

Friday, February 24, 2012

30w5d ultrasound and other notes

(x-post from my other blog, so if you read there, nothing new here)
I’m not used to being quite so nervous before what should be a routine ultrasound. As you know, I was a bit worried that they would tell us there was something else wrong with our little Truffle.
DH and I were both a bit concerned as the tech was doing the u/s; the cerebral ventricle she was measuring was at about 1.5cm (because Truffle is nicely head down, they couldn’t get a good shot of the other one), whereas they had told us before it was 1.2-1.3, so we were thinking that had maybe gotten worse. And there seemed to be a bit more fluid in the kidneys. But when the doc came in, she told us that the ventricle was measured at 1.5cm on the MRI, and the change in the kidneys was within measurement error, so all in all things seem to be stable.
Although going from 1.3 to 1.5 puts the ventriculomegaly into the ‘severe’ category rather than ‘moderate’. Choosing to ignore that particular fact at the moment.
And the best news – no additional findings. PHEW.
Truffle was measured (based on head diameter, 30w4d, belly size, 31w, and femur length 30w6d) at 3lb10oz. That’s a gain of a pound over the last three weeks, which is nice. Amniotic fluid was also at a good level, continuing to indicate that the kidneys are functioning reasonably well, and if there is an obstruction, it’s partial rather than complete (=bad).
His head was down, back along the left side of my uterus, with feet and hands over to the right. I find this interesting, because when I get a strong BH contraction, my uterus totally bunches up on the right hand side. I would have thought that was where most of the baby was! (Although I almost exclusively feel kicks from the middle to right of my belly).
Lots of other questions for my doc this time, mostly relating to what we can plan for and expect surrounding his birth.
The neurologist had said we should do another MRI post-birth. I was thinking this probably wasn’t necessary – we will deal with whatever may happen, and finding out there’s something else to worry about? well, I’d rather not. Dr. B said that she would defer to him, but her guess was that it would be to get a more accurate measurement of the ventricles to determine whether a shunt would need to be placed or not. I did not want to do it (because it requires sedation of my brand new munchkin) if it would not change anything, but if it could lead to a potentially helpful intervention I think it is a good idea.
As far as Truffle’s birth, there is no reason based on the kidney or brain findings at this point that we couldn’t have another vaginal, natural birth. I did promise we’d get to the hospital a little sooner this time (with T we arrived 30 min before he was born, and by the time I was on the triage table I needed to push, so especially as there was meconium that had come out when my water broke, things were a little hectic).
We should expect that the pediatric team would be on hand to do an immediate post-birth evaluation, but at this point there is no expectation that he would need to go into the NICU. She said perhaps one of the NICU step-down nurseries where the nurse to baby ratio is higher so they could keep a close eye on him – but hopefully he will be able to room with us right away.
He will have another ultrasound both of head and kidneys, and may need to take antibiotics prophylatically if the kidneys are still fluid filled, as that often leads to UTIs. I have found D-mannose quite helpful in fighting UTI’s, I wonder if there might be a way to use that instead. Will look into that.
He will also most likely have a test called a VCUG, something to do with the kidneys that I have not looked up yet.
So he will most likely be away from us more than we would like in the first few days, hopefully we can at least go with him to the tests/procedures so he’s not all on his own.
At least one procedure he will not be having is circumcision – we have been very happy with our decision not to have that done for A&T.

Saturday, February 04, 2012

Two weeks later...

We're just going about our daily existence at the moment.  We have all the information we're going to get, nothing we can do but wait and see.

I have told a few people face to face, and as settled as I am with trusting that we will enjoy and love our little Truffle no matter what, saying that there's something missing out loud is still really hard.  I can't do it without crying.

I feel like I have so many other things I want to say but I'm afraid that they come out in ways I don't intend.  And sometimes I can't even find the words.

I want to talk about how I find myself wishing we never had that ultrasound.
But that it probably is good to have an inkling beforehand that things might not go as hoped.
I think it would be harder, if Truffle does have challenges that our other boys have not, if we were trying to figure out why that was.  Now we know.
I wonder if it is worth it to have another MRI after he is born.  We know what the possibilities are, do we want to subject him to that when he's just a few hours old?  What will it really get us?  It's not going to change anything.

I don't wonder at all whether we will love him.  I know the boys will do so unconditionally.  I hope that we all can find it in ourselves to do the same.  I hope that I don't find myself looking at other kids and thinking 'why didn't we get that?'.  I hope that I am able to enjoy Truffle for who he is and not worry about what he is or isn't doing.

I also find myself hoping that I don't end up never being able to work again.  This part-time stay at home mom thing was never intended to be permanent, and I'm afraid that going back to work again might not be possible.  I often feel like I fall so far short of other stay at home moms in terms of the enrichment I offer my kids when I'm home with them, so many days feel like all I'm doing is whatever it takes to get through the day.  I don't know that I can live with feeling like that for the rest of my life.

Thursday, January 26, 2012

Last appointment... so now we wait.

We saw the pediatric neurologist today.  He told us that they did not see anything additional on the MRI, which is excellent news as it means we are much more likely to be in the category with less dire outcomes. If you're interested, this paper provides a pretty good summary both of their own findings and the literature.  So at this point it's just a waiting game - we will do another MRI post-birth, and hope that they don't find anything additional on that either (the fetal MRI can be a bit of a guessing game b/c the fetus is moving around so it's hard to get perfect images). 

We have another u/s in 2.5 weeks to check on the status of the kidneys; the would consider early delivery if those progress, as fluid in the kidneys if it builds up too much can cause a dearth of amniotic fluid (which is essentially the baby's urine), and can also cause kidney damage. I am hoping that since truffle's kidney size was relatively stable between 18 and 28 weeks that it will remain that way - having to deliver him prematurely is definitely not ideal, I think that the extra cooking time is even more important for him than someone without brain abnormalities. I have a feeling that as long as the post-birth MRI comes back clear, we won't know for a long time what we're dealing with, as a lot of the issues that these kids have do not necessarily show up in the early days. 

One thing from the paper that I referenced that took us by surprise was that in the group with isolated agenesis, 60/87 chose to terminate, and in the group with additional brain abnormalities, 70/88 chose termination.

Tuesday, January 24, 2012

MRI confirmation and more thoughts.

The MRI today wasn't too bad.  I asked before the procedure if I could lie on my side and the nurse said she didn't think that would be possible as they need to get things in a certain plane.  So I started out lying on my back.  After a bit (there were no timepieces, so not sure how long, but Mark who was in the room with me guesstimated 10-15min) I started feeling lightheaded, a bit queasy and clammy as if i was going to faint, so I squeezed the emergency bladder they give you and got the heck out of there.  I couldn't do another half hour of that, so i told them I had to lie on my side - and turns out that was fine.  So they gave me a bunch of pillows, and I was comfortable enough that I actually fell asleep (I was practicing my Bradley relaxation - guess it worked!)

After we were all done, the doc came out and told us that on his preliminary look at the scans there was nothing additional to what we had been told yesterday, but those findings were confirmed.

We then went to see the doc who did yesterday's ultrasound, and talked to her for about 45 minutes.  She said that at the u/s she wasn't sure if the corpus callosum was partially there or not - turns out it is completely missing, and the ventriculomegaly was confirmed as well, but the two are intimately linked (in this case, there can be other causes of the ventriculomegaly).  The MRI doc looked specifically for some other brain defects that can be associated with the missing corpus callosum and didn't see any of those (although he said that he would need more time and a fine tooth comb to make sure that some of the finer details are as they should be, like the infolding on the surface of the brain).

So we are *really* hoping that there are no additional abnormalities that are discovered in the next few days.  Please.

Then we spent quite a bit of time talking about what we might expect.  She said that if the missing corpus callosum is an isolated finding, i.e. no other abnormalities, there is a 60% chance that Truffle could be totally normal, or have such mild deficiencies that one wouldn't notice without them being specifically pointed out.  40% chance of some kind of developmental delay.  If there is an additional finding that comes out from the MRI, and perhaps the fluid on the kidneys is such an additional finding - it is unclear if the two are linked or not, then the chance of delays goes up to 70%.  The reason it's unclear is that the missing corpus callosum is not typically seen with kidney fluid, or vice-versa.  So it's possible that there is some underlying genetic issue like a trisomy of some chromosome that is causing both of these, which would put us in the latter category, but if it's just two random occurrences, then there is a higher chance that we would have no issues.

They offered for us to meet with a neurologist once the MRI reading is complete, to get a better sense of what the range of outcomes would look like; as a physician who sees patients he could give us perhaps a more complete picture based on his experience.

We could also do an amnio to find out whether there is an underlying karyotype issue that is causing these findings, but both my OB and the u/s doc said that if termination is off the table (which it is for me as I mentioned yesterday), they would recommend strongly against an amnio at this point because it could cause preterm labor - and in a baby with a brain abnormality, the last thing you want is additional stress and issues from prematurity.  So that, for me, is also out at the moment.  I don't see the need to have that information before he is born; perhaps afterwards as it might help us have a better idea of what to expect, but I don't think things will change much for a newborn so I don't think we need to know before that.

Mark's parents also know two people who had the same abnormality discovered via ultrasound, and both are completely healthy, functioning individuals.

So I think that overall, despite the confirmation of the missing corpus callosum, the information we received today (and what I found in some googling I did yesterday) is overall not as bad as I initially feared, when I heard, "an important part of your baby's brain is probably missing".

I'm fully prepared for us to have some struggles, it would be nice if everything worked out happy clappy, but I'm not going to bank on that, and I know that no matter what Truffle will be loved.  It seems to me that severe issues are unlikely (will get more info from the neurologist on what the "worst case" scenario would look like), and we will be okay.

Thank you SO much for all your thoughts, comments, and prayers - means so much to me to know we have so many people on our side.  xoxo.

Monday, January 23, 2012

27w4d and not so good news...

Bit of backstory first.  We did the Early Risk Assessment at 11w4d.  Bloodwork came back normal (risk of Down's syndrom in the 1:1000 range, trisomy 13/18 in the 1:3000 range), NT measurement was good, but they couldn't visualize the nasal bone, which is a soft marker for Down's.  So we had another scan 10 days later, at which everything fortunately looked good, and so our risk of Down's decreased to 1:3200 and 13/18 to 1:5000-ish.  So it was a little worrisome, but everything seemed to turn out okay.  This was the point at which we decided to share our news with the boys and the world.

Fast forward to our anatomy scan at 17w4d... we found out we're having another boy, and that he, at the time, had excess fluid in his kidneys (Hydronephrosis).  The doc told us that this is fairly common, particularly in boys, usually resolves itself, but if not just bears watching over time to ensure that it's not affecting amniotic fluid or anything else in the pregnancy.  Also that it is a soft marker for Down's, but given that everything else looked great, it only increased our risk to 1:1600 - so pretty much not even on the radar screen for me.  But we were scheduled for another ultrasound for 10w later to monitor the kidneys = today.

I was honestly pretty unconcerned about all this.  DH was debating about coming to the u/s, saying, "well, what if we get some bad news like the baby does have Down's, I wouldn't want you to be alone for that" (as I was at our 10wk appointment when I found out Schweffel had no heartbeat).  I told him that if it worked out with his schedule at work he should come, but no need to jump through any hoops.  I was expecting that just like in the cases of many of my friends who have had various soft markers on ultrasounds, like spots in the brain or whatever, that the excess fluid would be gone by now, and we'd get the all clear.

Well, not so much.  Not only was the fluid in the kidneys still there, when they scanned the rest of Truffle's anatomy, they found that he now has a buildup of fluid in the ventricles in his brain, a condition called "ventriculomegaly" which can be associated with anything from completely normal outcome (which is what the article from Children's suggests as the most likely) to mild developmental delays to severe retardation, mostly depending on the cause.  The doc looked around at the rest of the brain, and apparently one potential cause of the ventriculomegaly is that the corpus callosum, which is the structure that connects the two halves of the brain, can be missing (agenesis) - and she couldn't find it on the ultrasound, or maybe only part of it (and I'm not sure if she was just saying that to avoid giving us all the bad news at once).  So we're going for an MRI tomorrow for a more detailed look.   The range of outcomes if the CC is in fact missing is much less likely to include "normal".  It sounded like they are more of the opinion that this is some kind of chromosomal problem given that we now have two abnormal findings; the kidneys which have not resolved (although not gotten worse either, which I suppose is good), and the potential malformation in the brain.

Obviously, not what we wanted to hear.  For me what made it even harder was that each person we spoke to about it (the radiologist, my OB, and the genetic counselor) made sure to mention that although termination is not an option in this state, they could refer me out of state if that was what our decision was, if the additional testing confirmed abnormalities.  I couldn't even begin to think about it without sobbing.  I had held myself together pretty well up until that was mentioned, but that's what necessitated tissues.  (I honestly can't imagine terminating at this point unless Truffle wasn't going to be able to survive, and even then I'm not sure I could willfully end his life).

I'm trying really hard at the moment not to drive myself crazy with what-ifs and to wait until tomorrow when we will have more information (they were able to schedule the MRI for tomorrow afternoon).  I know that we will all love Truffle regardless but at the same time this may mean a very different future, particularly for me, than I had envisioned.  Mostly I'm managing, aside from not being able to write this news to anyone without sobbing.  And forget talking about it.  I'm sure as things settle in and I'm used to our new normal it will be okay, but having to adjust that normal is hard.

So please, think good thoughts for us, and hope that we don't get worse news tomorrow.