Raw Milk and Honey

Monthly Archives: July 2014

I met the Neonatologist…

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and he was awesome 🙂

At the advice of Dr. Lopez-Zeno (my specialist), I had a consult with Dr. Kupke, the Neonatologist/Geneticist at Northside Hospital where we will deliver. To be honest, I was more annoyed that I had yet another appointment to go to (at 3pm, on a school night, to fight rush hour home to the kids), but I felt much better than I anticipated after the fact.

Dr. Kupke was very optimistic, but realistic, and struck a perfect balance of concern and encouragement. So in our half hour together, we came up with (well, he came up with, I just wrote notes) this action plan:

  • I now have something fancy called a neonatal alert: When I arrive at Northside, all sorts of people will know about it, and our needs will be known by our care team.
  • When he is born, a NICU team will be there to greet him and give a thorough exam in the room with us. Assuming there are no immediate health concerns, we can cuddle him a bit and do some initial bonding and the counting of fingers and toes.
  • From here, John will go with Barrett to the Transitional Nursery until I’m able to join them. This is a step in between the regular “well baby” nursery, and the NICU. He could be here for a couple hours, up to 6.
  • While in the Transitional Nursery he will have a lot of visitors – Neonatologist, Geneticist, Neurologist, Cardiologist. He will also be fed under supervision to check for signs of feeding problems. He will be monitored for infant spasms and oxygen levels. During this period, if nothing presents as a concern, he gets to come back and stay with us. He can only be held in the Transitional Nursery for 6 hours, so if something does present as a problem, he will be admitted to NICU, but Dr. Kupke felt the odds of this were lower.
  • Before we go home, he will have the following tests: DNA Micro-Array (a full chromosome workup to look for errors, deletions, duplications, etc), the geneticist will examine him for signs of any “syndromes,”  an echocardiogram (20% of babies with ACC also have heart defects as the heart is another midline structure in the body – no cause for panic, our ultrasounds have not yet detected any major heart defects, but an echo is more accurate for murmurs and other mild defects), a follow up MRI (this has been recommended by everyone so far – to confirm diagnosis and look at the final folding patterns of his brain for any defects), and the state test for inborn errors of metabolism.

I now understand why Dr. Lopez-Zeno wants me to consult with the pediatric neurology group next. The group at CHOA Scottish Rite has a lengthy waiting list, so a consult now makes him an existing patient later which will speed up the availability of any appointments we need after birth, and they will be familiar with us when they come over for his exam. So, we are working on the referral forms, and we are hoping to get that appointment in the next several weeks.

Prayer requests:

here are some specific things I’m praying for, should you care to join me 🙂

  • I would prefer no complications at all, obviously, but if they are to be, that they would manifest in the hospital where experts know what to look for. My biggest fear is missing something at home.
  • That breastfeeding would be a non-issue. It’s really important to us for a variety of issues, and one of my biggest fears is that his ability to do this will be impacted.
  • That I can still VBAC (this has nothing to do with his diagnosis, but more with my gestational diabetes), but if a repeat c-section is meant to be that it would be obvious and I would be at peace about it. I guess what I’m saying is that his birth would be “directed” from above.

Those are the big ones right now, and that’s it for this update. Next week is significant! After my appointment with my specialist tomorrow, I will start visiting my doctors twice a week for Non Stress Tests. It’s such a grind, but it means that we are now no more than 7 weeks away from “eviction day.” I have to deliver by 39 weeks due to my history with gestational diabetes. I will be 32 weeks this weekend. I cannot believe it.

Thanks everyone for all the encouragement and prayers!

 

Sinking In

Posted on by Posted in Agenesis of the corpus callosum, Pregnancy .

I think last Tuesday I was pretty much running on adrenaline. I didn’t cry. I was so mentally prepared for what I “knew” they would say, that I barely flinched. I’m a bit self conscious about receiving any accolades for “being so strong.” So here’s the part where I tell you that the next day, I came home to my husband waiting for me in the driveway, his eyes red. He had Googled, poor guy. We just held each other, and cried. The “sinking in” feeling is where it gets real. This is not a “maybe,” it’s our new unknown reality.

It’s not sadness though. Just an insane worry for a little dude we already love so much. I think about how John named him (and was rather adamant about it too). It couldn’t be more perfect.

Barrett: bear-like, strength or power of a bear

Maxim: greatest

Just a 30 week update for you today:

At the Perinatologist Friday, Barrett was weighing in at 3lbs 4oz at 29w5d, putting him in the 55th percentile – which is perfect for him. He’s maintained this same rate of growth for the past 2 months now.  Other remarks were that everything else looks good “considering.” So fluid levels, heart activity, movement, breathing…all good. We left with instructions to make consultation appointments for the Northside Hospital Neonatologist, Dr. Kupke, who is also a geneticist, as well as a mission to get a referral to Children’s at Scottish Rite to consult with the Pediatric Neurologists. No rush on these, we have a while, and these appointments are more of the “what to expect” variety so it won’t be so overwhelming at birth and thereafter.

At my regular OB visit today, I have gained 1 pound total from pre-pregnancy, my BP was 120/80, and as per his usual style, Barrett had a great time kicking the doppler wand, but his heart rate was variable in the 140’s. I made my next 7 appointments for presumably the rest of this pregnancy for our NST’s at that office, and so the pattern after my visit with the Perinatologist on 7/11 will be Tuesday NST’s (non stress tests*) at the regular OB, and Friday NST’s at the Perinatologist. Fun.

(*Non stress tests: I sit in a recliner for at least 20 minutes with 2 straps around my belly. 1 is a heartrate monitor, the other is a contraction monitor. I am given a little button to press every time Barrett moves. The clicks of my button, his heart rate, and any contractions I have are recorded on a “strip” – a printout – and the hopeful result is a heart rate that increases with activity, and returns to a baseline resting pattern soon after activity. Dips to low, racing too high = bad. A flat heart rate with little variation is “non reactive.” The goal is to get a “reactive” test result which generally means that he is happy with his womb environs, and handling his stress well.)

So, all in all, we are sinking into this new normal. Some days I find I don’t even think about the diagnosis anymore. I’m trying to just live in the moment and enjoy these last remaining weeks – hemorrhoid and all. I’ve been simultaneously encouraged and terrified by the parents of kids with this diagnosis who have shared their stories with me on Facebook. I hope that some day I can be a help to someone as well.