Monday

Today went rather smoothly, I took a lot of naps and thought about how much I would like to be cleaning my home. Sleep vs. Clean - a tough battle, so I did a lot of sleeping and little bit of cleaning, telling myself I will get it all done one of these days.
Abe has been very vibrant and full of pep and I wonder sometimes if he shouldn't be more tired. It's wonderful to have him be a little more energetic, or I should say he is A LOT more energetic. I hope that's a sign of his heart on the mend, and that he is reserving some of those calories rather than working them all off! I imagine he fees pretty good after feeling so awful for as long as he did, I can equate it to when I have been ill with the flu and recover. . . it feels like a new life. Abram is kicking both legs, even higher than what Bryan and I have ever seen him do. Waving his arms back and forth all the time, and continually knocking himself in the head/eyes as he doesn't have a lot of control yet. Coos are becoming louder, and still smiling frequently. Sometimes I forget he is such a sick little guy with all of his pep and color. I find myself neurotically looking at him wondering if he is becoming more pale or modeled like he was in the hospital. I look back at pictures of Abram and wonder why we didn't see how pale he had become before he went into the hospital. Hindsight is 20/20, not fair.
Yesterday Abe pulled out his entire feeding tube without Bryan or I noticing! We both looked at him, and I noticed something looked different as I didn't get it right away. . .then realized, he was holding his entire tube in his hand. I replaced the tube without problem, getting pretty good at it as this is the fourth time he's needed it to be replaced. Feeds went rather well today with one vomit this morning. Abe's Aunt Laura is bringing dinner tonight from Cheeseburger in Paradise - my diet has definitely gone out the window and the new work out DVD is collecting dust. More important people to tend to at this time :).

We are finally home!

It's been a challenging couple of days getting home with new routines after spending two weeks with Abram at Children's Mercy. Abram received countless tests to rule out/in metabolic, genetic, immune deficiency, and blood disorders. Although some tests are still outstanding, the doctors are leaning towards the cause of our son's dilated cardiomyopathy as a virus that attacked his heart, the enterovirus matter of fact. What I have learned is that this virus is very common, second to the common cold virus (rhino virus), usually causes meningitis in addition to cardiomyopathy in SOME babies, but somehow Abram was not affected with meningitis. Other babies can fight off the virus completely. In Abram's case, it's likely his immunity was jeopardized due to his decreased nutrition by acid reflux. Apparently there is no rhyme or reason that some babies are affected and others are not, unless there is another underlying condition/syndrome. We were told there was a possibility of Abram having a syndrome called Barth's Syndrome, however, several of the tests for this tested negatively. To be sure that he does not have this would take a genetic test and it seems to me if I remember correctly the geneticist that was working on Abram's case did not think it would be helpful to run this test since all other tests pointed away from this. THANK GOD. Learning about this syndrome scared both Bryan and I, and I know for me it still is in the back of my mind looming about. So, I guess we only think we know what caused Abe's heart problem. Not knowing certainly weighs heavily on me.
On the other hand, we are finally home. Despite constantly keeping notes of when we filled the pump to feed Abram, to when we last gave him his many medications, at least we can say we are doing it all at home.

In Dedication

It has been a scary couple weeks for me and my family, and decided that I would write about it for the reasons of my own personal therapy and to allow friends and family a place to learn about Abram. And so, this blog is dedicated to our new son, Abram.

Despite the pain of our situation, it has been comforting to know of all the prayers and thoughts coming our way and I thiank all of our friends and family for these. I would love to return my thoughts to each and everyone of you in personal emails/phone calls, however, Abram is requiring heavy duty care and my time and energy are limited. So, upfront, I apologize for the way in which I have chosen to keep you updated, but hope that you will find it comforting to know there's a place to find out what's going on with us, if you so do wish. Thank you for all of the thoughts, prayers, and support - and please keep them coming!