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:

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).

3 comments:

J o s e y said...

Wow, so much to think about! I'm glad it's been pretty positive so far!

Anonymous said...

Nico, have been following your journey with baby C. I am so glad that he is here safely and healthy. I think it is true that all the tests can show things that are very common and self-resolving. I'm so glad that so far, there is nothing major to worry about and I truly hope that C has the type of agenesis which does not impact significantly on his mental development. I have read that many cc agenesis people lead normal lives.
Anyway, just want to let you know that you a doing so well and C is one cherished little boy, no matter what.
Violet xx

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