Saturday, August 15, 2009

Sleepless Nights

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! 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'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!


Camille Bailey Aagard said...

Our families are so similar and your trial is so intense I find it almost physically painful to read about. The terror and exhaustion you're experiencing makes me so sad. It is so frightening to me to hear how much God thinks a mom can handle. You are responding with astounding resilience and faith, but of course you are human! God be with you and carry you, Summer.

Kaidence's Mommy said...


Angels are holding you up and I have no doubt they they will continue to carry you when needed. Trust your instincts about Mason. Heavenly Father is watching and guiding, you just have to follow. We are thinking of you. Please call if you need anything or just need to talk. Even if it is 3AM. That is what friends are for after all.
I still have those same thoughts about Kaidence every night before I go to bed. All we can do is go forward in faith while putting one foot in front of the other. We love you guys. Hold on tight!!!!!!

The G Fam said...

I am sorry things re so rough right now. We of course will continue the prayers, and are hoping for the miracles to continue to fall into place, because everyone who has met Mason knows that most kiddos that have had it like he has would not be here today. Be strong, and know there are MANY pulling for you guys!
Heart hugs,
The Gourleys

Kelly said...

Mark and Summer - Your family and especially Mason are in our family prayers every night! Please let us know what we can do to help.

Kelly and Stef.

The Simmons Family said...

Reading Mason's updates are like dejavu. I am so sorry. I know the what the insomnia feels like and always wondering what HIS plan is for your baby boy.

Owen has had insomnia lately as well and he's always been a great sleeper. Sigh. You'd think it was the other way around.

I'm praying for you during your cardiology visit tomorrow. I'm sure you're anxious to hear how he's doing.

Our big visit is on Tuesday. We haven't had an echo since May and I can't wait to see what his heart is up to.. good or bad. I just want to know.

We continue to pray. Thinking of Mr. Mason often.


cici said...

I am going to bed now and say a rosary for your sweet little Mason. I hope it's just a slower growth phase and he starts to eat better, sleep better, and gets lots of energy.
Expect a healing miracle
{big hug}

Kimmie said...

I check on you often since Tiffani told me about you, and think of little Mason and your family everytime Im near the neighborhood. Sort of a funny story on the sleep issue....I remember after Easton was born and the doctors gave us the "gloomy" outlook as they preped us for the Norwood. I prayed so hard and vividly remember saying that I don't care if he doesn't ever sleep, please just let him live. Well....Easton did NOT sleep more than a 2 hour stretch his first 18 months of life!!!! I guess I got what I asked for!!!

Good luck in the upcoming weeks.

Megan and Devin said...

My heart aches for you when I read this. I'm tired and get a headache just reading about it. At least us nurses get to go home and sleep after being up all are truly a wonderful person!
All you heart families have our love, respect, and admiration.

Good luck with the upcoming weeks and months.....I will be praying for Mason!

Megan Bland

brooks wynn said...

Hi Summer, I have been following Mason's blog for a long time, but have never left a comment. I just want you to know you, Mark, Mason & your sweet family are in our prayers. We pray the best of care for Mason & that he can quickly get what he needs to get better. Take care & God bless, Brooks & Mike Wynn Family

Amy said...

Very best wishes to your family from ours here on the East Coast.

Our youngest, Daniel, had his Fontan in June and is doing fine. But he still doesn't sleep!

I hope everything goes well with the upcoming cath and GI procedure, and with the antibody levels.