Today was our morning of appointments at the hospital, although very busy, it is nice to have them all at once. We don't enjoy how early they start, packing up two kids and all the gear we need is tough to do before 9am. Today I started my drive to the hospital and thought, "I'm incredible, how did I manage to do all of this and not forget anything?" Then I remembered I'd forgotten my binder with all of Hope's important papers, not so incredible!
Sadie goes to a program at the hospital that is run by volunteers. They play with siblings of the patients to make it easier for the parents. She LOVES the program and was thrilled to run in the door, she didn't care what Hope and I were doing or when we were coming back. This makes our hospital visits a lot easier on everyone. Unfortunately, they only had room for her until 10:45. Thankfully we had a friend come and pick her up as I wasn't finished until 12:00.
Hope had an echo, an ECG, blood work, an appointment with the cardiologist, an appointment with the feeding clinic and an assessment with the nutritionist. All that to say, it was a very busy morning with a lot of information exchanged. Everything looked pretty good with the echo, her heart function is doing well, the valves are working correctly and her shunt is still pushing enough blood volume through it (although it is kinked in two places). This means that she is a great candidate for the second surgery and they don't see any concerns at this point. Her MRI in August will give a better picture to verify this information before surgery.
We are still having problems with the feeding tube and they are not able to give us any answers about why this is happening. We have switched back to the short tubes, they seem to give us less trouble for some reason. They are only 15" long, so they won't work when Hope gets any longer as they'll barely stick out of her nose at that point. Hopefully we find a solution before we're facing that problem.
Oral feeds are still not going well, they're wondering if Hope has severe oral aversion and are discussing the possibility of starting her on solids at 4 months of age to work with this problem. I guess we'll revisit that discussion in August when we're back. She's still growing, but her growth has slowed down a bit and they have decided to up the volume she receives at each feed. Please pray that her little tummy will tolerate this increase without too many vomit sessions. Please also pray that I'll be able to keep up with her in my pumping and won't get too far behind as I work at continuing to keep her on breast milk to help her stomach. I also need to find more time each day to practice her oral feeds, I guess I'll give up on showering to fit that in!
When I got home and was removing Hope from her carseat, her tube got stuck on one of the buckles and was pulled out of her nose. To finish off her fun day, we had to insert a new tube. She has been such a trooper today and deserves an ice cream...if she knew how to eat!
I know it sounds like things weren't that great, but that's a good visit for us! They are pleased with Hope at this point, she's even in the 3rd percentile instead of the 2nd now for height and weight! Hooray! The cardiologist said that our second surgery should happen before Halloween. That gives us a better idea of what we're looking at and we can plan to be in Edmonton at some point in the fall. We should be given a specific date or better range at the beginning of September.
I'm meeting this week with a nurse that we're looking to hire privately to cover some of our day time needs. Going through the nursing agency is much too expensive when the insurance company isn't paying the bill. This will make it more manageable for our family and will give me a day every week or two to get things done and be free of all my Hope duties. Other than loving her of course...I can't get away from that one!
Tonight our night nurse will be here and after 3 nights without her, my body is cheering for her return. I'm exhausted and am more excited about sleeping through the night than I am about the cupcake in my freezer! That shows you how much I missed my sleep, cupcakes are my favourite.
We continue to be blessed by the kindness of others and are reminded everyday that God is looking after us and using the people around us to spur us on and encourage us. If I had been writing down all the acts of kindness, we would need a new book already. How we will ever truly thank you all, I have no idea, we appreciate everything you do and wouldn't be functioning without you.