Today has not gone well and it's only noon. Hope had a terrible night and made sleeping next to her almost impossible. I had totally lost my patience by 8am and was thrilled to hear they wanted to take Hope for an echo. I stayed behind to try to sleep off some of the grumpiness, clearly this wasn't possible! Her echo was not successful as they weren't able to see the aortic arch, the one spot they truly wanted to check. Please pray that her next echo would be more successful. What they could see in her heart, appeared to be functioning well. We are very thankful for that news and can pray the arch is functioning well, although they aren't able to see it.
We're having an electrical issue with our car, just what we needed. We'll have to take it in this week and have that taken care of. We're hoping it can be done quickly and inexpensively. We've removed a fuse to stop the run lights from being on all the time. Please pray that we take it to the perfect spot and can have it fixed quickly and easily. We were told our brakes and rotors need to be done in October, we may try and have it all done at once for convenience...that won't be a pretty price tag but we've been expecting the expense and planning for it, that's better than a surprise.
My dad flew back to the USA today and my mom needed to take him to the airport. Shawn is at work and I was here at the hospital for almost an hour with both girls! Abbey was coming to pick up Sadie but we've had trouble with her cell phone getting my messages. Please pray that we can work out these issues as I don't ever want to be alone with both girls at the hospital like that again, I was about to lose my mind! I feel bad when I'm super grumpy and someone is coming to help me.
For the first 30 minutes we were alone, Hope was asleep in the bed and doing well. Sadie was sitting on my lap and watching some episodes of Max and Ruby. The calm quickly ended when the lab appeared to draw Hope's blood. I'm tired of the lab being called to do this, it's never successful! The nurse practitioner can draw blood from Hope's scalp and is almost always successful. The lab has failed every time and refuses to draw from the scalp. Hope was poked twice before the tech decided she was too difficult and left. I have forced a note to be added to her file that does not allow any lab techs to draw her blood. If you fail 100% of the time, why would we let you continue to practice on our baby? The lab in Calgary has gotten to know Hope and does a better job, but we never have the same lab tech here. Please pray for Hope in this area, it's so hard to draw blood and she needs it done more often than we'd like.
Hope's feed schedule has been changed to try and help her sleep better through the night. We'll see how that turns out tonight. They have also ordered a new PICC line to be put in, this will involve another trip to the OR. We're not sure when this will happen, but it should be in the next couple of days. Hope needs a line in to receive some protein boosts that they are hoping will bring down her abdomen swelling. The swelling is causing the hernia to protrude more and makes her uncomfortable. It's a domino affect with Hope and we want to try and attack the source of the issue that is causing everything else to be worse.
I feel frustrated, exhausted and discouraged today. I am happy that our favourite cardiologist is still on service this week and will take amazing care of Hope though. Please pray for energy, rest and some encouragement today. I often go and look at the prayer schedule for Hope when I'm feeling down. It instantly encourages me to know that I am not alone and Hope is being lifted up in that very moment.