Our baby has been diagnosed with HLHS (hypoplastic left heart syndrome). We believe that God is in control and will use our situation to glorify his name. As we take this journey, we invite you to join us on our knees and pray for a mended heart.
Saturday, 16 June 2012
Blood Donor Week
Today I was a bit emotional, I forgot how wonderful "normal" life felt. After a short taste of it at a bridal shower, I was feeling a bit out of sorts. I miss leaving the house and feeling totally free. Hope is a lot of work to care for, even with help. When I leave her at the house, I know that whoever is there is going to be very busy and running around until I return. It was still nice to get out, and it made me look forward to Hope's next surgery and life being a bit more normal afterwards.
Hope is doing terribly with the bottle, I worry that she'll have the tube until kindergarten! I know that's not true, but it sure feels like it might be somedays. I'm not sure how to convince Hope that eating without the tube is a good idea. If anyone has experience in this area and some ideas for me, I'm all ears. We were hoping to make some progress while my mom was here, but Hope had other plans. Please pray that we are able to get Hope to take oral feeds soon.
One of our friends is a nurse and has done a couple of night shifts to help us with Hope. She is currently working for Canadian Blood Services. We talked with her about our desire to have more people donate. Hope used a lot of blood donations during her first surgery. Please read what she has written below and think about doing something to help Hope and others in need: "I’m sure many of you have noticed that this past week was National Blood Donor week, and perhaps you caught some of the coverage on the news. No matter where you are across Canada or around the world reading this blog, donating blood is an amazing way to support Hope. Hope will be undergoing another surgery in a few months, and will definitely require blood products during that time. Even if you don’t have Hope’s blood type, by donating you help other people and the people supporting and donating in the name of their loved ones in turn help Hope and the circle continues. Every donation gets separated into 3 products so one donation helps to save 3 lives. Donating blood may be intimidating for the first time, and with the tight eligibility criteria like travel and medications, one might not even try. I encourage everyone to take time to either call the 1-888-2-DONATE number to ask about your eligibility or make an appointment with your local clinic. Donation takes approximately 1 hour and can be done every 56 days. Start this new habit of saving lives today!"
Our insurance company is working to hire some paediatric nurses for us. Once they have someone hired, the night shifts will begin. Please pray that the perfect person is hired for our family and especially for Hope. We are really looking forward to this starting, we appreciate you all praying that this would be a reality for us.
Tomorrow we'll be attending Lincoln's burial. I'm sure that everyone prays they never have a reason to attend the funeral of a child. This is the first time we'll be seeing our friends since they lost their sweet son. Please continue to pray for them as they walk through this terribly difficult time. We have learned through this entire journey that it's the prayers and support of everyone around you that will keep you on your feet. It reminds me once again how blessed we are to have the support of so many wonderful people. Thank you.