Moving Forward

We’ve been working at processing all this news.  I’ve been swinging back and forth between “ok” and “everything but ok” a lot, but I seem to be getting through part of the  “processing” and working toward learning to deal with everything and figure out what exactly we need to do.  At the very least, I’m crying less frequently and less hysterically.  I’m told this is pretty typical for dealing with something like this, and I’m just trying to do the best I can.  I’ve been blessed to have my family here to “rescue” me through a lot of this and help keep me from being by myself too much.  I’ve had help with the house post-flooding, I’ve been taken shopping to get out and I’ve been allowed to just “lose it” when I need to lose it.  They’ve also helped keep me busy and focused on the positive.  I’ve also been subbing for a friend for several days this week, which has been a great help for keeping me busy.  Life with fifth graders is never dull!  It has been wonderful to have things to keep me from dwelling too much on things I can’t really do anything about right now.

Moving forward has so many meanings right now.  As far as Savannah’s condition goes, I’ve been doing research and talking on some message boards with other parents who have babies with heart conditions.  One thing I’ve found is that some babies have had improved diagnosis as they have more fetal echocardiograms.  This seems to be because the baby is still growing and developing and many times the heart continues to make improvements and changes.  One particular baby had many of the same conditions that Savannah has, and as the mother went for more echos during her pregnancy, the conditions improved as the baby’s heart grew.  This gives me some renewed hope that things can improve from where we are right now.  We return to Riley for another fetal echo on September 12.  Please pray, in earnest, that we get improved news about Savannah’s heart at the next echo.  Pray specifically that the holes in her heart (Atrial Septal Defect and Ventricular Septal Defect) begin to close themselves and that the two valves between the atriums and ventricles will both develop fully and separately.  Also pray that her smaller ventricle will “catch up” in size to the rest of her heart and be able to function normally. 

Also medically, I’m looking in to getting a second opinion about Savannah’s echos and ultrasounds.  I think we have a fantastic pediatric cardiologist and I have a great deal of faith in him, but I found out that Boston Children’s Hospital, which is the #1 Pediatric Cardiology facility in the country, will review a set of fetal echos and ultrasounds and offer up a second opinion.  Then they can work with our current cardiologist to decide on the best course of action.  I think that in the case of a rather complex set of heart defects, that “two heads are better than one.”  Also, there’s always the possibility that the cardiologist at Boston will catch something that the doctor  here missed, and vice versa.  The more we know, the more prepared we can be.

All that being said, nothing is certain for a final diagnosis until Savannah is born.  They can tell a lot in utero, but when it boils down to it, they can’t get a good, solid look at every part of her heart until she is born and they can echo her directly.  We know that this will happen shortly after she is born and that will help us create the “final plan” for exactly what course of treatment she will need.  I still pray daily (multiple times!) that when she is born, her heart will be fully functional.  The fact that is it on the wrong side of her chest and backwards is not something that can or will be corrected.  A heart can function just fine with those issues.  It is the structure of the inside of the heart and the blood vessels that matters, and how they move blood to and from the lungs and body.  She needs oxygenated blood to reach from the top of her head to the tips of her toes, so that is what I ask for.  I know we serve a God who is still in the business of miracles and healing, and that we often have not because we ask not…..so I’m asking!

For anyone that has missed it, we started a facebook group for Savannah’s Heart, too.  I’ll post there when I update the blog, or when we have a little update or picture to share between blog posts.  You can find the group on Facebook by searching Savannah’s Heart or going here: https://www.facebook.com/groups/330765797059775/
Please feel free to share the blog or facebook page with others.  The more people praying for Savannah’s miracle heart, the better!

Overall, I’m actually feeling pretty good.  Sweet Miss Savannah is an active baby….she moves a LOT and is always letting me know she’s in there.  She’s so strong!   The only thing I’ve found so far that seems to calm her down pretty quickly is Ryan talking to her.  She was moving and grooving the other night and as soon as she heard Daddy, she started laying still.  Of course, we were TRYING to get her to move for him, the little stinker.  She already seems to do things her own way.  Ryan says she’s going to be a little turkey when she gets here and I think I agree.

I’m also trying to anticipate the timeline for our needs after Savannah’s arrival and finish up a couple baby registries.  I have a shower in TWO WEEKS and all of these developments have put me behind in registering for anything.  I’m also altering the registry somewhat to try and anticipate our changing needs based on how Savannah’s health develops.  One example; I wasn’t going to register for a crib.  We have an old, used one that I was going to work with.  But we have been told that Savannah is probably going to come home with medical equipment and will possibly be facing multiple surgeries.  Since I’m extremely short, we’re going to need a sleeping situation that will allow me to pick her up and put her down by “scooping” and not picking her up under the arms.  This means a different crib is necessary.  Since drop side cribs are now illegal, I’ve found a crib that offers a “drop gate” that drops on a hinge 6-9 inches from the top of the crib.  This, coupled with the mattress at the highest level, should allow me to pick her up and put her down without hurting her or disconnecting any equipment on accident.  Not something we anticipated needing, but all the same, if it’s what we need to care for Savannah in the best way possible, we’ll make it work somehow!  It’s so hard to try to plan for everything we’ll need after she’s born, especially given the circumstances.  I’m doing my best, though, and I think for now, that’s all I can do!