Wait and see fatigue

October is a busy month for Isabelle.  So far we have gone for a physical therapy/feeding therapy appointment, a paediatrician appointment and a cardiology appointment.  Next week we see the surgeon.  Now that Izzy is a bit older, we are starting to mentally prepare for her closure surgery.  In her new spanx and corset combo her tummy looks pretty flat while being compressed.  The omph still pops out when not compressed but I think that being able to compress flat means all her organs now fit within her torso.  We had previously been told closure would happen sometime in the fall but with a little more than 2 months to go in the year I anticipate it to be more like the new year.

Physio has been going well.  Izzy started solids about a month and a half ago and after a beginning struggle, she is starting to really love to eat.  She still has foods she doesn’t like (beans and raspberries) and food she prefers (rice mum mums and pear) but she will sit and eat most of her food now and we don’t have to distract her.  She really loves finger foods.  The other day I steamed some butternut squash chunks and she gobbled it all up.  I think she just prefers some independence. She still won’t drink from a bottle but she will take milk from a sippy cup and is learning to use a regular cup as well.  On the mobility front, I have been a bit concerned because lately she cries when she is on her tummy and when we put her on her back she isn’t so interested in rolling over.  But both the Physio and paediatrician are happy about her progress and told us not to worry too much if she doesn’t want to do something, but whether or not she can do something.  They are very happy with how far up she can push herself on her hands and thinks crawling will come soon.  

The cardiology appointment was a long one, we were at the hospital for 2 hours.  Isabelle had both an ECHO and an ECG done.  In general Isabelle tolerated both exams all right.  Must have been the Wiggles they played on big screen.  She really loved doctor Greenway, giving him all sorts of giggles and smiles.  Isabelle has two holes in her heart.  Both are on atrial wall so they are called ASDs or atrial septal defects.  Read the Wikipedia on ASDs here.  ASDs are fairly common.  One of the holes is a naturally occurring hole in fetuses that is supposed to close at birth, but stay open in about 25% of adults. They often go undetected because if the hole is small there are little to no effects so there would be no reason to do an ECHO to check for the hole.  In Isabelle’s case, one hole is considered small at 2mm and the other considered moderate at 5mm.  The holes are significant enough to cause a heart murmur.  There is also slight stretching of the right side of the heart because of the blood leaking from the left side of the heart into the right.  Some other symptoms that may be associated with the ASDs are the quick breathing and the slow weight gain. We will be monitoring these on an annual basis to see if they will close on their own or if Isabelle will need surgery.  If she had just the small one, the cardiologist would have been pretty sure that the hole would close by itself.  The moderate hole would have fallen into the range of annual monitoring on its own, and with the two holes so close together the cardiologist is unsure if the leaks interfere with each other causing neither holes to close.  We will be monitoring these holes and hopefully they will close on their own. If they don’t, and if she has symptoms that do not go away, there may be a heart surgery in Isabelle’s future.  The cardiologist mentioned around the age of 4 or 5 as a good age to do the surgery.  From speaking with moms that have had children with ASD repairs, the surgery can now be done through the artery rather than having to do open heart surgery. They would basically go through the artery starting at the groin and insert a patch.  The recovery time is quick – a few days at the most. 

All in all this cannot really be considered bad news.  It’s more just inconclusive news.  There is still a lot of time for the holes to close up by themselves and if not it seems as though the surgery is minimally invasive.  Emotionally though, I was really just looking forward to definitive good news, so this was hard to take.  I think I am going through “wait and see” fatigue.  During pregnancy we had to wait for Izzy to be born to see how severe her defects would be.  After she was born we had to wait and see everyday if we could take each baby step closer to getting us home.  Once home we have been waiting to know when her closure surgery is.  Now this will be another 4 years of waiting and seeing.  To be honest I feel guilty even having these emotions because on the whole we are doing so well, but I am just over it.  It feels a lot like we are just spinning our wheels or like we are stuck in limbo.  We can’t plan holidays because we don’t know when her closure surgery is. We don’t know if there are certain symptoms we should watch out for in the next 4 years. We don’t know how much bigger the right side of the heart will stretch.  On most days I am just happy to do regular baby stuff with Izzy.  I love watching the girls and dog interact.  I love playing and singing songs and taking Izzy for walks.  These couple of days have been a bit harder.  But tomorrow will be a better day.  

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2 thoughts on “Wait and see fatigue”

  1. ❤ Jess and Mark. Yes the wait and see is draining. You have the right mindset, take in all the small precious moments. Thank goodness for the medical advancements and Izzy is developing well. Anytime you want to chat about anything, I'm only a phone call away.

    Like

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