A 2am blog posting could only mean one thing...night feeds have returned to being our responsibility. As a laid in bed tonight, looking over at Hope's face on the baby monitor, I realized that it was responsibility and not lack of sleep that was draining. For the last 10 days we have slept soundly, knowing that Hope was safe and would be watched closely. Tonight, for the first time in 10 days, she was my responsibility again and the weight of that made it difficult to sleep.
Going forward, we will have a night nurse twice a week, until our coverage runs out. This will still be a huge blessing, but won't be quite as nice as every day coverage! We have applied to a few programs to try and get some government coverage to give us another night or two. The social worker has already told us that it would be nothing straight of a miracle if we were accepted. Apparently, cardiac kids are almost always rejected. Their condition is only seen as temporarily life altering. After the surgeries are completed, they are expected to live a fairly normal life, and this fact disqualifies them from a lot of programs.
Sadie has been waking up in the night again. Likely her two year molars giving us grief. It's a little frustrating to be woken up when you know you won't be able to sleep through the night anyway. Waking up for feeds does give me another opportunity to pump and will help me to keep up with Hope's demands. I'm still finding pumping to be extremely daunting and am simply striving to make it to the next surgery before I pack it in.
We continue to function each week, purely based on the kindness of our friends that are helping us. I am rarely alone with both girls. I have no idea how I would function, maintain my sanity and properly care for them without the help. Curious George is also an excellent babysitter in our home and is often on the tv! Thank you for continuing to pray, please pray for us through this transition of night feeds returning. It was a much needed break, but reality has returned and with it comes less sleep.
Keep trying for FSCD (if that's one your applying for)...we were finally accepted with them after a couple of months and lots of follow-up calls! Be persistent. If they come for a home visit, you can explain all the extra care that Hope requires. The contracts are on a yearly basis, so they should only take into account the needs for her for the coming year. It will also really help out when she's an inpatient at the hospital again (covers RMH, parking, food, gas etc). Good luck and praying for you!
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