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:

Neurologist
Neuro-opthalmologist
Urologist
Cardiologist
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).

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!!)

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.

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.

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.

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.

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.