Today’s fun word that makes my tongue happy. When I was in labor with Karissa this was my focus word. Or phrase. Whichever. I laid there in the pool and just said tectonic plates over and over and over again. don’t ask me why I made this tonite’s post title. I think the words are just stuck in my head because I am beyond tired and can’t think of anything else at the moment.
Tomorrow morning we will pack up the baby and head to the hospital for a long day of testing. it won’t be non-stop testing all day, but it will be a lot of “hurry up and wait” for a few tests and then a few follow-up appointments with cardiology and pulmonology. Honestly, I am not expecting a whole lot out of this day of testing. We know she has/had a defect in her heart called a “PDA” – patent ductus arteriosus. Basically an extra arch in your heart that EVERYONE has – it’s just that almost everyone’s arch closes by the time you are 2 days old. A large PDA CAN cause feeding/growth issues – but her original Echo test in February showed that hers was small. Actually what all her OTHER doctors told us was that it was very mild, very small, didn’t play into her issues AT ALL (as her monitors were going off around us that her heart rate was above 220). Right, ok, got it. her heart is beating at a rate too fast for most ADULTS but this hole in her heart has ABSOSMURFLY nothing to do with it.
Fast forward to a few weeks ago when I get the actual reports from that inpatient stay and the report says that it’s actually a mild to MODERATE sized PDA, along with 3 or 4 other “areas of insufficiency”. A Vastly different picture than we were first led to believe. Frustrating, but you know, we’re being told by three or four of her docs that her heart is FINE and to stop worrying about it. So you try to do that. We never really felt settled about it because it just seems so ODD – to be told there’s a hole in your daughter’s heart that is known to cause issues similar to what she is dealing with, but don’t worry about it – as soon as she gets some calories in her it will close right up. And I was pretty much there until I started noticing her coloring getting all wonky at weird times.
I could live with the weird color changes of my karma-karma-karma chameleon child, but then I started noticing that she was getting VERY sweaty and clammy in the middle of her feeds. I actually thought this was more of a hypoglycemia issue, and brought it up to her GI last week who was quick to inform me “oh no no no, you only see issues like that in kids with heart defects”. When I casually mentioned this to our ped while she was checking Kaylen for strep throat last week, she decided to call up the cardiologist and get this straightened right out!
So that brings us to tomorrow. I don’t know what to expect or even hope for. I am beyond tired from the constant night wakings of Kendall who is still clearly dealing with large amounts of pain from somewhere in her body. I just wish I knew how to help her better. I am VERY encouraged by her progress with bottle feeding, and I do feel like she IS finally gaining some weight (i think she may have finally made up the pound that she lost last month!) – but I don’t feel like she is “fixed”. She is “between crises” I think. But maybe this is just the tiredness talking. Maybe I am just tired of hearing doctors take stabs at random generic diagnoses and not getting to the ROOT of what her problem is.
But then again – maybe tomorrow will be the day. Maybe tomorrow they will still see the hole in her heart and be able to say, yes, this is it. if we close this archway, her blood will flow to the right place, her calories won’t be being burned up like gas, and THEN she can start thriving. We can hope.
Sorry to be such an incoherent downer tonite. I just need a really big boost of GOOD news or GOOD direction tomorrow. I need more than 3 hours of disconnected sleep tonite. Kendall needs a pain-free night and mercies to endure her tests tomorrow WITHOUT a lot of squirming around or freaking out about not being in HER crib for naptime. We have a lot of running around to do to get the kids all taken care of at the right times, so please pray that all of that works out.
and in one last prayer request, if you have any prayers left after all that – my darling baby sister is in the hospital AGAIN right now getting her contractions monitored and drugs pumped into her to stop her premature labor AGAIN. She is pregnant with twins who are trying to come about 8 weeks early. From what I am hearing tonite, they need at LEAST another 2 more weeks in there to have the best shot at leaving the NICU quickly. Pray that the medical team attending to her tonite is able to support her and the babies in the best way possible.
Thank you so much for praying – today and always.
Will update as soon as i know more.