As we all know Mason has never been a good sleeper. Lately it had gotten even worse! Is that really possible?! This week there has been at least three nights that he got a whole hour and a half of sleep!! The other nights his average has been 3 hours! Usually in the early mornings around 6:30 I can get him back to sleep, just in time for Preston to get up for football (yes, 3rd grade football at 7am 5 days a week! Crazy!.....at least when school starts it will be in the evenings), and then if I try to lay my head back down for a little more sleep Ammon gets up and wants to wake up everyone else! I try to occupy him so little Mason can get some more sleep.
First of all...he NEEDS more sleep, second of all...you'd think a little guy in HEART FAILURE would sleep all the time, third of all...I NEED more sleep too!! I know most days I feel exhausted, but some how (and I believe with angels holding me up) I manage just fine to go on with my day and take care of my busy family. Okay, so in all reality my kids sometimes tell me I'm grumpy, and I know I am, but I try really hard not to be. (Usually I'm grumpy according to them when no one wants to do their chores!! But I need their help!!) And my secret to survival this summer....I am lucky enough to have a sitter come most afternoons to help w/ my other kiddos so that Mason and I can take a nap. (Thank you to Lyndsi and Torie, and to family and friends who cover for them when needed!)
As for Mason, I have a few theories on why he may not sleep. 1) Scared to go to sleep because of bad memories of waking up in the hospital. 2) His arrhythmia medication which he took for his first 15 months of life caused restlessness, and now even though he's been off of it for almost 6 months he has really bad habits of thinking Mommy needs to hold him all night 3) Due to his heart failure he just really doesn't feel good. Poor little guy at night lately tosses and turns, while crying and breathing quite hard:( To me it seems like he's got a bad tummy ache! So it could be one, all, or, none of the above! I pray my sweet little Miracle Mason can get some better sleep for his health and my sanity.
As for me, even when I finally get Mason to sleep, lately I have trouble falling to sleep. My mind wanders to Mason's future. I sometimes see him go through all the stages of childhood my other kiddos have, think of sending him to kindergarten, see him running and playing with his siblings and friends, see his sweet personality shine upon those he meets throughout his school years.....then I tear up and wonder am I in denial? Is his mission in life shorter than I desire? What would I do without him here? Will he get a new heart in time to fulfill my hopes and dreams? I worry for my sweet baby!
Mason seems to be getting sicker rather than better this last month. He now refuses almost all foods and drinks! Thank goodness for the G-tube. He went from being a really good eater to not wanting anything. This makes me so sad because this is a true sign of heart failure! He will still breastfeed but tires out much sooner than he used to. He looks paler and some days is quite lethargic. It is very sad! We go for an echo, blood work to check his level of antibodies, and his last dose change of the carvedilol this coming Monday. We are going to talk Dr. Everett about doing the heart cath sooner than in another month, because Mark and I feel we don't have much time to waste. We feel he needs to get on the transplant list sooner than 3 more months!
Please pray for our Miracle Mason! It comforts me knowing so many wonderful people are praying for out broken-hearted baby. Thank you!