UPDATE (7/26/13)
Last night was exhausting. We know bringing a baby home is tiring, but bringing a 7 month home with 8 different meds that need to be given at various different times in addition to being fed over an hour long pump, and monitoring his oxygen saturations is a lot to bargain for. However, I cannot emphasize enough just how worth it all of this is….it’s just exhausting.
For example, I tried to take all/most of the duties last night for us so that Leah can get some sleep, but the night got away from us. Beckett woke up numerous times which transpired into many “meltdowns”. These meltdowns are stressful and kinda scary! It usually begins with him beginning to whimper and cry, which turns into an all out scream, in which he begins to desat, but then he kicks around so much that the sensor can’t read his saturations anymore, then he sweats so bad that he sweats the “tape” off his cheeks that hold his vital nasal cannula in his nose (especially vital while he’s screaming and desatting), then while Leah is trying to bounce him to settle him down…I’m trying to retape his cannula back to his sweaty face in which I miss repeatedly and poke him in the face, sooooooo…..he’s screaming, the pulsox reader is screaming at us, we’re trying to hold the oxygen to Beckett’s sweaty face while Leah is bouncing him, he’s pulling it away, Leah and I are trying to speak calming to one another, it’s 3:00am in the morning, and the room is pitch black. From the outside looking in you may think, “what’s the big deal?”….but I’m tellin’ ya…it’s crazy.
So, Leah and I are a little sleep deprived. And to make it a little worse, after all the commotion last night, Beckett started doing some arrhythmias (where his heart beats erratically) again this morning. That was kinda scary and certainly not ideal for a baby with a heart condition. Thankfully a “home nurse” just arrived and assessed him. She really wasn’t sure what to say other than call the Cardiologist (I’m not even sure she even knew he had a heart condition when she first arrived). The Cardiologist later affirmed for us to feel comfortable calling them at any time throughout the night, so that made us feel a little better. But still….yikes!
So, yes…yes we are home! Hallelujah! But please keep the prayers coming. He still has a lot of meds to work through, and a lot of developmental issues to overcome. Please pray for continual perseverance for Leah and I, for patience with Beckett and with one another, and certainly continual healing for Beckett.
I hope this post didn’t/doesn’t sound too much like complaining, but rather informing. Also, thanks to each of you who have signed up to bring us means….what a huge help!! If you are interested in helping us in that way, please feel free to sign up here:
http://www.takethemameal.com/meals.php?t=ENMX4112
#GoBeckett
#ODAAT
Heart of Beckett 
I always appreciate that your posts are honest and straightforward. It helps us to know how to pray specifically. Be assured of fervent prayers being lifted up. I often wake in the middle of the night and when I do, I pray for your family then as well. Keep hanging in there and we’ll keep praying you through.
This does not sound like complaining at all but informing us as to what is going on and how to pray. Praying that you and Leah get a good routine down and that Beckett will have some good solid nights of sleep.