Cardiology Update

Confession.  I stopped at McDonalds on the way home from our appointment today and ordered myself a happy meal and a coke as a way of eating my feelings.  😬

Before I freak you all out and give you the impression that today's appointment was awful or anything, let me be very clear: we didn't learn that anything "worse" is going on with Margaret's heart.  We just received some confirmation that her next heart cath will be soon.  Her team was originally hoping to push the next procedure past the new year, but she's scheduled for her next heart cath on Nov. 17th.  We are going to not get admitted the night before and see how things go.  Last time, we did get admitted the day before but she did ok and really it was a lot of us just trying to entertain her and extra monitoring by nurses.  This time, we will show up in the morning and get that night before at home together.  With many heart caths, patients are able to go home later that day and we are going to be extra hopeful and optimistic that we won't have any big surprises that keep us there for more than maybe one overnight... we like to keep the bar set high 😜  We have 2 weeks until the procedure and that means 2 weeks to hopefully avoid catching any sort of illnesses that might result in postponing it!  Yikes - prayers for health of our family are greatly appreciated!


Back to the appointment today.  We started with the usual: weight and height check.  Margaret is a solid 29" long and about 17 and a half pounds -- we were happy to hear this since we've been messing with her feeds a little to see if we can get more control of her flaring reflux plus she's been ill and throwing up even more of her feeds than usual.  She's looking a little leaner lately but we have an appointment with a new dietician next week to discuss calorie intake and everything.  

Next we had a pacer check.  GREAT news during this check.  Margaret's pacemaker continues to be an expensive accessory and not a necessity!  Read: it hasn't been pacing her and her heart has been doing all of the beating.  The tech is one of the sweetest people at the clinic (they all rock!) and gave Margaret the cutest little Medtronic beanie baby.  It's always exciting to hear that her heart is not needing the extra support form the pacemaker.

The echo was tough.  We tried giving a dose of benadryl to see if we could get her to relax a little and I guess it somewhat worked.  The tech was able to get the images although I'm certain they weren't of the best quality but thankfully her team knows and expects this of Margaret's echoes.

Meeting with Margaret's cardiologist was up next like always he listened to me give updates, share our concerns, asked questions and we chatted.  He tried to explain Margaret's echo information and I kind of understand but the second we leave I seem to forget it all.  It's still overwhelming!  We left with a "see ya in couple weeks!" We brought a picture of Margaret in her Halloween costume to our appointment for her cardiologist today.  After all, these people are part of our extended family and we think they enjoy watching their sweet patients experience milestones almost as much as we, the parents, do.  That's what makes them so fantastic!  They are invested in our babies and we greatly appreciate their dedication.  At one point I said "I have to be honest.  Margaret's heart sometimes really worries me and stresses me out.  I try  not to let it get to me, but sometimes it just does."  To which he reassured me that it's ok and she stresses them out sometimes too with her 'surprises'.  Again, SO thankful to have such a wonderful team taking care of our little miracle.  

In other news, we have our 3rd tooth!  I say "our" because it's been an awful couple of weeks of hardcore teething and we have all been suffering as a result.  Now we wait for the other top tooth to start moving down and start the torture that is teething all over again! 😆

Margaret got approved to get a special vaccination to protect her against RSV and we are happy about that.  This will give us one less thing to really stress about this winter especially since she's already had two awful colds.

She's doing fabulous at daycare and neither of us cries when we do drop-off in the morning.  There is no way to describe how awesome it feels to see her notice me when I show up to pick her up. 💕 She makes my heart so happy!

Friends - PLEASE be mindful and honest with visiting with Margaret and our house this winter.  We are encouraging those who plan on visiting to please get the flu shot (although we know we cannot force anyone) and to skip a face-to-face visit if you or anyone around you has been sick.  We are quite nervous moving into cold/flu season with Margaret and her sensitive immune system and will not risk exposing her to anything if we can and are able to avoid it.  Thank you for helping us keep our little lady as healthy as possible!!