Another bump in the road

Well three days ago I took that video of Ava and she was quite happy – and then yesterday the little monkey went downhill again.   When I went to see her yesterday morning her heart rate and respiratory rate were up and her oxygen saturation levels were down.  They were worried she was getting sick, and then when they went to access her picc line for blood work – the picc was sluggish and they couldn’t draw blood back in the line.   That made me and the Cardiology Fellow  wonder if perhaps Ava hadn’t properly been getting  all of her heart medication that she gets through her picc.   She is so dependant on her milrinone that if she didn’t get enough of it over-night,  she would definitely be showing worse signs of heart failure, even if she was or wasn’t getting an infection.

But irregardless, her temp was also up, so they had to do blood work once again to see if they could find pinpoint any source of infection.   Later in the day it came up that there were some markers for infection in her blood – her white blood cell count was up and her nutrafils were up as well – but we have to wait 48 hours for blood culture results to come back.    Just to cover all her bases, the Dr put Ava on two strong anti-biotics in case there was something, because we all know that Ava has no resources to fight an infection on her own.  Towards the end of the day last night she also started de-satting again so we had to add oxygen to her CPAP, something we’ve never had to do before, so that wasn’t a good sign, but she was sleeping quite comfortably so I felt Ok to leave her for the night.

Then early this morning I got a call from Ava’s Doctor telling me that Ava didn” look great and that I should come to the hospital.   And when I got there, Ava did look quite ill, but at least opened her eyes for me and they were relieved because she had seemed so out of it before.   But she just didn’t look like herself, and the fact that she was also fluid over-loaded didn’t help.   But as the day went on she did get a bit better.  The nurses gave her some medication to help her sleep and some morphine so she would be comfortable and she slept most of the day.   Towards the end of today I actually got a smile out of her which was wonderful.   And we were able to turn down her oxygen a bit and so praise God she does seem to be on the mend, but I guess with Ava you never can really tell.

Oh my Ava!  These episodes of hers are certainly stressful and seem to take years off of my life.  But even though I cry and wonder each time if I’m losing my baby,  I also feel an over-whelming sence of peace, that no matter what happens either way, it will be OK – God will give Jason and I His grace and strength to get through it.

But where there is life there is hope!    And even though we are experiencing another bump in the road,  Ava’s journey is not over yet, God may still bring this baby a new heart!!

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We are here till we grow…

So it would seem that this little monkey…

ava

Needs to grow into her shunt!  She finally had her echo-cardiogram this morning and praise the Lord her heart function looked good – which is such a relief because that had Jay and I  really worried.

But now that they have ruled out that her heart isn’t working too hard, they’ve basically said that she is sending too much blood to her lungs because the shunt is too big – too big on purpose because it won’t grow and she will – and that is why her oxygen saturation’s are at higher levels than they would like to see for a baby who has had the Norwood heart surgery.

So the consensus today on rounds was that we have to stay here at the hospital until Ava grows into her shunt!    Oh man!  So does that mean days, weeks or months?  I have no idea.  Thankfully another cardiologist came by this afternoon and said that they really don’t want to hold us hostage here, and that if Ava is doing well in all other areas, that they would discuss her case with the team and hopefully we might be able to go home,  even though we would not meet the  protocol for sending home single-ventricle baby’s.  So all we can do now is pray and make Ava eat… lots.

And that’s not easy because although her tummy handles my milk just fine,  she can’t gain weight on it because it doesn’t give her enough calories and she uses up more calories than a normal baby would just by living.  And unfortunately her little tummy just can’t handle the extra volume she would need to make up for this – when they have tried to increase her volume she just throws it up, even though she gets fed over an hour.

So they supplement my milk with condensed formula for calories, but she doesn’t tolerate that well either,  so she still hasn’t gotten up past her birth weight of 8 lbs, even though she gets fed every 3 hours around the clock by her ng tube.   And it’s breaking my heart, but she’s having a hard time even sucking on a soother without gagging and retching so please pray that we can get over that hurdle so that she could start to feed orally… the occupational therapist was here again this week trying to get Ava to take a bottle but didn’t get too far, plus it really tires Ava out.

But her little vocal cord is starting to heal because Ava is getting louder every day, so hopefully we can do a feeding study before we get out here to see if Ava can drink non-thickened fluids without aspirating  – and that would open the door up for breastfeeding.   So many hurdles to jump over.

Thankfully she is doing well in other areas, and its so cool that Ava is now meeting our eyes!  My parents came down last weekend and my mom was so kind and stayed with Ava over-night and almost all of the next day to give me a little mini-vacation with my family and when she was here Ava started meeting her eyes and responding!   She was looking right at my mom when she snapped this pic…

avabyoma

And it’s so cool to see Ava start to meet these milestones, even though her prolonged stay in the critical care probably set her back bit.   But back to my parents, it was so great having them here last weekend and then we were blessed even more this week when friends came to  visit us yesterday and today.   We can’t tell you how much we enjoy these visits.  Our kids love seeing friends and Jason and I love it and it just makes us feel closer to home.  Just like when people send us emails or even leave comments on the blog,  we find  it all so encouraging, even though we might not always find the time to respond back.

So we are just going to get into a groove and take things day by day and pray that Ava will grow!