One week home and it is great! Soooo glad to be under one roof all together. Even though life isn't exactly as I anticipated (but really, when is it anyway?!?!), it is just as it should be...together. I am so much more thankful now for the littlest things that I so often took for granted before Henry got sick. Just to name a few...being woken up in the night by my little baby boys, not having time to brush my teeth because I am busy playing and taking care of them, making lunches, making dinner for the family, eating at home, pushing the double stroller for a walk, the chaotic sound of Henry crying, Grady racing around on Bee roaring like a lion, and Belle barking! And then, of course, I am even more grateful for the obvious things...two wonderful kiddos, and perfect partner (John) that I can't imagine having gone through this with anyone else, family and friends near and far who have shown us the most amazing love and support, the joy of getting to read and tuck Grady in at night, the warmth of snuggling with Henry on the bed, and watching the love of two brothers who have only known each other for 5 short months that seem like a lifetime. I am so full of thanks.
People have asked if I am exhausted, but I really feel so much better than I did when we were in the hospital. Even though I wasn't keeping up with Henry AND Grady, the tole of going back and forth and the emotional stress was just soooooo taxing. (but the answer to the original question of being exhausted is still YES!) Henry sleeps through the night for the most part, occasionally waking up because of gas, diaper change, etc. But we are up changing his food bag, checking on the pump, checking on Henry, checking on Grady, etc. So we aren't sleeping through the night just yet :).
Henry seems to like being home...still smiles so easily, takes his naps pretty well, and overall is a very happy baby. He gets startled often, usually when Grady very ferociously roars at him, or really any of the loud animal noises he likes to do too close to Henry's face. On the same note, it was Grady who had Henry giggling yesterday, just being silly making a Harold helicopter noise and doing a crazy dance. Henry also gets very distracted while eating now...way too many other interesting things to look at, and hear!He looks great. His color is beautiful...perfect skin with pink rosy cheeks...I think this has improved! His eyelashes are coming in more and remind me of Grady's. His little thighs have some meat on them, and overall he is not as bony. He is down on his weight though, which I am hoping is just from the transition home and a couple of days of not eating well. As of today, he weighs 12lbs., which is right about where we were last week when we left the hospital. We went to the cardiologists again today and his echo-cardiogram was the same. We will check again in 2 weeks, which will be 8 weeks since he was diagnosed. Being home is such a relief in so many ways, sometimes allowing me to think that Henry is okay. But going to the doctor brings me back to the reality that he has a very serious condition right now and we still need to be very vigilant about praying for his healing. Please continue to do this with us!
For the most part, ours days are pretty normal. It's just the mornings and evenings when we are getting both boys up or down, doing meds, and getting Henry off or on the feeding pump that get a little chaotic. But we have a routine down and it is going smoother each day. Grady is used to Henry's tube...it's pretty much a non issue... in fact, he knows that it is there to make Henry better, which is a relief. Henry got hold of it this morning and pulled it out, on accident of course! He didn't get it all the way out, but ripped the tape off of his face which hurt pretty bad. We have made it the grocery store and gone on a couple of walks, but Henry's exposure at this point still needs to be pretty limited. We are in the process of deciding what we can and cannot do right now, and what our fall/winter activities may entail. Please pray that we are wise about this everyday. Grady is good...very glad that I am home. It took a day to transition (I think he had had enough moving around and different people in his life with very little of John and I). I know that he had a blast, and got some great one on one time that might not have otherwise had, but he missed Mommy, Daddy, and Henry. He always wants to know where we are going, who is going, and make sure that we are shortly coming home. He constantly wants to "hug me and kiss me" and same with Henry. Anything train still excites him and can captivate his attention and imagination for hours! We love listening to him talk...he comes up with some of the funniest things and amazes us with how smart he is. I love my boys!
