6 weeks of survival…

Ok – so we are 3 days into being home and I’m already exhausted…. oh dear.    And this is with Jason still home and my mom here and people bringing us dinners… scary huh?   It’s just that caring for Ava doesn’t leave a lot of room for sleep at night – I’m up for an hour at midnight,  feeding Ava, giving her meds and then pumping.   And then again at 3:00 am for at least a half hour feeding her again and then again for another hour around 6:00 am feeding her, giving her meds and pumping again.   Phew…

And with her ng tube,  feeding her is pretty slow, and it has to be slow or else she will throw everything up.   At the hospital they used an electric pump that just pushed her milk through her tube into her tummy over an hour.  But  since you can’t go home on a pump, we are using the gravity system instead which is a bottle that is attached to a tube with a drip chamber.  You hang the bottle upside down, adjust how fast it drips into the tube and let it go.  Except gravity is tricky because it can just stop when the pressure gets to high, or it can run through too quick,  and so it needs to be watched pretty close and because of that I’ve stopped using it at night.   I’ve tried, but night number two I woke up to realize that Ava’s entire feed hadn’t gone through at all, the milk was stone cold and she was starving.  I was so mad!    But another reason not to use it as night is just for safety,  if she somehow pulled her ng tube out, or if the milk started flowing too fast it could choke her.  So now at night I have to manually put the milk in a syringe and push it through the ng tube which I try to do over 40 minutes.  It’s nothing like feeding a normal healthy baby.  Nothing at all like getting up in the night and taking your sleepy hungry baby to bed with you and lying there nursing the baby  as you both fall contented back to sleep.   I wish.

And Ava still isn’t regularly breastfeeding…  which is a blog post in itself so I’ll chat about that later.

In good news, we spent yesterday afternoon at the hospital here in London so the cardiologist here could get a baseline on Ava.  She got a chest x-ray (poor little monkey) and an EKG, an echocardiogram and some blood-work.  A full work-over and thankfully everything looks great.   The nurse practitioner here in London was wonderful and I’m so glad that we live close to a good hospital.  We will be doing shared care, so next week we go back to Toronto and then back again in a few weeks to London.   We see each place once a month I think so every two weeks Ava will be seen by a cardiologist.  We will also be visiting Ava’s pediatrician here in London and we have a nurse that will come to our house once a week to check her out as well, so hopefully nothing falls through the cracks during this ‘interstage’ that Ava is in between her first two surgeries.   This isn’t a good time for single-ventricle baby’s as I think I mentioned before – they are very fragile with not much resistance so it will be nice to get through this time till her next surgery.

And that is where my six weeks of survival comes in.    Even though we are home, it doesn’t feel like home because I’m not picking back up my normal life… no baking, or shopping or cleaning or cooking, and it doesn’t feel that good.  But then after chatting with my wonderful caring and supportive husband tonight – who himself has had his hands full caring for the kids and trying to sort Sarah’s diabetes stuff out so she can go back to school – I realized that it’s kinda like taking your first baby home.  I always say that the first six weeks with a new baby is often just about survival, as you learn your new baby and get used to sleepless night… and that thought cheered me up because that’s kinda like life for us right now.   These first 6 weeks will likely be tough.  But as Jason says, she hopefully will get stronger every day and things will get easier and maybe even by the end of March we will be talking about her next surgery which would be awesome.

So it’s just about taking this day by day, sleeping when I can, not trying to do too much and just realizing once again that this is a moment in time.  God will get us through it.  It’s tough now, but I can hardly wait till we can look back in a few years and say, wow, remember when we first brought Ava home and how with the help of friends and family and by getting our strength from God, we got through.

And it is good to be home.   And I’d rather be here than at the hospital.   So I hope I’m not whining,  I just need to start this 6 week count-down and keep my eyes on the prize of getting her bigger and stronger.  So please bear with me, I hope I don’t get too grumpy and I’m sure eventually all will be OK.  🙂