Truffle update :)

I know that there are some who follow this blog but not my family one, so I thought I'd post a quick update on my not-so-baby-anymore baby.

I cannot believe it's been a year.  A whole year has passed since I felt that pain that made me go "oooooh", a gush of water, and then C born 3.5 hours later.

He is doing great.  Really, truly, marvellously.  Yes, he's got some delays, but they are relatively minor in comparison to what they could have been and to some other children that I have seen at his various doctors appointments, so we are feeling truly blessed and so lucky.  We did find out when he was around six months old that there is a genetic basis for the various issues that were picked up; he has an extra copy of chromosome 8 in some of his cells (not all; an error in cell division after he was conceived), which is called Trisomy 8 mosaic (T8M).

And much of that lucky feeling comes from the little guy himself.  He has been not only the easiest baby ever, he also has an absolutely delightful personality.  He just loves to be around people, and rewards anyone who pays attention to him with his amazing smile.  He will play shy at first when he meets someone, tipping his chin almost to his chest and then looking up at them out of lowered eyes; such a flirt!  He is just thrilled by any attention he gets (which does translate into some vigorous crying when the person leaves, especially if that person is mom or dad!).

He adores and is adored by his brothers.  They are best at making him laugh, with their crazy antics and physical humor.  They each have their special thing with him - oldest brother A loves to stroke C's head, and will do so first thing in the morning and last thing before bed.  T smothers him with hugs and kisses - always a kiss good morning when they see each other the first time.  Recently they've been doing, "HUGGYYYYYY" where they give each other the sweetest of hugs, with full participation from both.

As far as where he's at, his fine motor is spot on - he's got the pincer grasp down, can manipulate very small things he picks up, drop toys to pick up something else - really right on track.  His gross motor is a bit behind; he's still working on crawling - does get up to hands and knees from time to time but doesn't really like it, and can lift his hands, but hasn't figured out the leg part yet.  He's rolling like a champ, which happened within the past month or so.  Absolutely loves being upright and walking around, which he does very well with some fingers to hold onto for support.  He's also getting better and better at cruising.  So it is absolutely not a question of if he will walk, just when.  Which in the grand scheme of things makes absolutely no difference.  Speech is the area of the biggest delay, which unfortunately has not been helped by a couple of recent ear infections.  We're being evaluated for tubes next week.  So there, he's just starting to combine different consonants, of which he has only a few.  But that's fine too - even if he doesn't ever talk, we're all learning sign language together.  I think as a family we probably have around 30 signs at the moment - and Cam has one or two - more, and maybe all done.

I felt so much joy and excitement when he first signed "more" (for more birthday cake, no less - a boy with his priorities straight!).  I no longer take these milestones for granted as I did with the older two, which makes it that much sweeter when he achieves them.  And you should have seen how thrilled he was with all of us cheering him when he asked for more birthday cake!  Huge grin on his face, arms and legs pumping with excitment.  Full body joy.

We still don't have a good sense of what his difficulties might be in the future - speech/communication is likely to be one area that we have to work hard at, gross motor it seems like he will get things eventually just take a bit longer than "normal", and who knows what learning or social challenges there might be.  But I have an overwhelming sense now that whatever comes, we can deal with it, and that Cam will continue to be the delightful little boy that he is now.  (well, probably with a few tantrums throw in!)

Just as a point of interest, here are the various things that Cam has, associated with the T8M.
Agenesis of the corpus callosum (found in utero, 28w)
Hydronephrosis (kidney dilation, found in utero, 20w, starting to improve)
Deep creases on his feet
Feet curving inward (due to tight foot muscles; stretching out by putting shoes on the wrong feet)
Fisted hands (wearing braces while sleeping; much improved)
Small ear canals, slightly odd shaped ears
Four misshapen vertebrae (watching to see what happens as he gets older)
No vision issues until a recent note of asymmetric light reflex by his ped; will be checked by a specialist soon
Small ventricular septal defect (VSD) - will check on around age 5
Some mild feeding issues - not good at breastfeeding or self feeding, taking to chunkier foods very slowly
Speech delays - sign language and speech therapy starting in June
Gross motor delays - physical therapy started at 8w old, making great progress

HA survey...

Edited... there's still time... everything takes me longer than I think it will these days.  I'll update this post when I've closed the survey and started the analysis.  I only need a few more responses to get to 250 which I think is a nice number - so if you see this and haven't taken the survey yet, there's no time like today :)

**********************************************

If you're reading this, have or had hypothalamic amenorrhea, and have either made changes towards recovery, recovered, or gotten pregnant, I'd love if you would participate in the survey I'm doing for my book.  It will take probably 30-40 minutes.

You can either use the link below, or send me an email at noperiodbaby@gmail.com with an email address to send the survey to.  The link is supposed to save your work as you go along so that you can re-enter and finish at any time, but it's been somewhat unreliable.  So if you think you'd work on the survey over a few sessions it would be best to do it via a link I can send through email, which will definitely save.

I'm planning on starting my analysis on 5/13, which I realize is just a few short days away - so if you can take the survey before then that would be marvellous.

Thanks so much!!!
Nico

HA Survey link

Backstory

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.

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?

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).

Notes:
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!

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.

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).