Saturday, November 23, 2013

Updates and Stuff

I had a follow-up appointment with our cardiologist yesterday.  I thought it would maybe take an hour.  Ha!  The sonographer was SOOOOO SLLLLOOOOOWWWW.  I'm pretty sure I fell asleep a few times.  But I can't begrudge them getting all the information they can possibly get right?

So everything is pretty much the same:  still pulmonary atresia with complicating sinusoids and fistula.  Still fluid around the heart but still a small amount -- it hasn't increased (yay!).  Still a boy.  Still cute and wiggly and wants to live!  One development that is causing some additional concern is that there appears to be some shrinkage (maybe atrophy?) of the aorta and the left ventricle.  Not good.  If that is indeed the case, there will be no option BUT transplant.  But because the muscle of the right ventricle is so thick and stiff, it may just be pushing into the aorta and left ventricle and causing the appearance of shrinkage.  Since there's nothing we can do about it and you can't really tell for sure at this point, it's kind've a moot point at the moment.

We spent some time going over the timeline for what's going to happen though and that was very helpful.  Around Christmas Chopper and I will go and tour Children's Medical -- mainly their cardiovascular ICU because that's where the baby will be admitted.  They have a regular NICU but his heart condition is severe enough that he has priority for the cardio unit.  We'll meet with the cardiac surgeon and the a cardiac interventionalist and have an echocardiogram done on site so that they have access to their own information when the time comes for reference.  Then I'll have one more echo done with Dr. Gibbin again just to measure fluid levels, etc.

So on the day of delivery!!!!  I will be induced in the morning during the week.  After he's born we'll have a few minutes to hold him, give him a name and a blessing, and then he'll be taken to the ICU.  He'll have an IV inserted (do they make them that small?) and an umbilical line where he'll recieve prostaglandins.  These will keep his ductal arch open and allow some blood flow to the lungs since it won't be coming through the heart.  After those are in place, he will be transferred to Children's Medical (they don't have labor and delivery there) and admitted to the cardiac ICU where they will do an echocardiogram and a catheterization and then we'll make decisions about surgery/transplant/etc.  After I'm discharged I will MOVE over to Children's and live with him!  This is the part I'm worried about -- I'm going to try to breastfeed.  Or at least pump.  My cardiologist says that there is more progress in babies who not only receive breast milk but receive that skin to skin contact that breastfeeding provides.  And we want to give him every chance in the world!!!

And that's it.  I'm 26+ weeks and 158 pounds (that's my 30 lb. mark) and definitely pregnant.  But I'm excited about the holidays and then afterwards it will be preparing the family for complete upheaval of our lives.  I'm very very worried about it.

On a slightly upbeat note -- Megan had a Thanksgiving reenactment yesterday at school that I and the kids attended.  Thank goodness I went loaded with snacks!!!  It's wasn't participatory, it was a demonstration and poor Abby had been hyped up to go to Megan's school and have a Thanksgiving snack.  I'm really grateful that she is a forgiving and resilient child and doesn't get upset when things don't go the way she expects.  Because Megan certainly does.

So either I'm getting worse at taking pictures or my camera is suffering from too many kids handling it.  So even though they're blurry you get a sense of it.

Yeah, not happy.  At least in the beginning.  There were apparently a lot of things wrong with what was going on but she did perk up when things got rolling.

The demonstration was basically of what they have learned about the pilgrims and the Native Americans and it was super cute.  The Native Americans helped teach the pilgrims about growing crops so they could survive.  They taught them that when you plan seeds in dirt (sunflower seeds in pudding) you add fish (goldfish) for fertilizer and then cover it all with dirt (oreo cookies).

When they were explaining it a lot of the kids were saying "ewww gross" but every single snack got eaten!!  I guess pudding and goldfish works out ok!

I love Megan's little hat.  Her teacher made them all for the class and they are adorable.  It was a great little lesson that we might try again at home next week so that Abby can participate.

Now Megan has a whole week off of school!!  I feel like I should do some fun things with the girls but I also am hosting 4 families on Thanksgiving day and I've got a lot of cleaning to do as well.  We'll see how it goes!!

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