Skipping ahead a few chapters . . . .
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“If he makes it though this week, he might live 3 months . . . possibly 6 . . . but he definitely will not see his first birthday.”
Dr. Anderson’s eyes were gentle and sad as he discussed Matthew’s prognosis with us. Aaron and I both swallowed hard and managed to nod through our tears as we held our little Matthew, too weak to cry and too weak to eat. At only 4lbs, 11oz and a tiny 12 inches long, the blanket almost felt empty.
Earlier I had asked one of the other doctors how we would feed him at home since he wouldn’t take a bottle and wouldn’t latch on to nurse. He said, “Sometimes with babies like this we don’t. We find that they drift off into a comfortable sleep and then pass away within the week.” I was shocked at his suggestion. I simply could not bear the thought of Matthew suffering starvation and dehydration, and insisted that we place an nasogastric (NG) tube to give him nourishment. After only 2 small feeding via the NG tube, he was able to take milk from a bottle and the tube was removed. “See?” I thought to myself, “He just needed a little help getting started.”
We brought our tiny, frail new baby home. We couldn’t wait to get him away from the bright lights and loud beeps of the NICU. We would love him and keep him as comfortable as possible for as long as we had him. Even though we were glad to be leaving the hospital, we were more than a little nervous as we left, armed with a supply of NG tubes, morphine to give him when he started having respiratory distress from his heart failure, and a myriad of other various medical supplies and instructions.
We never imagined we would be here today celebrating his first birthday.
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You are incredible.
Your daddy and I are so proud of you, and all that you have done this past year. You have been through more in one short year than some people go through in a lifetime. You are a tough little guy – stronger than anyone I know.
I love sharing your story. You are an inspiration to many, and bring hope where there is none. You have touched more people than you or I will ever know.
You light up a room with your smile. Even strangers, who know nothing about you, are drawn to you. Everyone notices what a beautiful baby you are, and comments on your incredibly deep blue eyes and your wild-man blonde hair – but it’s more than that. People can tell there is something very special about you.
And, there is something very special about you – more than just your miraculous physical healing and incredible developmental strides. It’s something that is difficult to describe . . . until someone holds you. Then they “get it.” It’s something about your sweetness, your innocence, and the affection you show people. It’s the light in your eyes. It’s your pure joy and your sense of humor. I love hearing you laugh, and no one makes you laugh the way Micah can. Between you and your brother, I laugh more now than ever have!
I love how little you still are. I love that you’ve been small and cuddly for so long. I love all the “baby stuff.” But, I also love celebrating each milestone with you. I love seeing you take pride in your accomplishments and clap your hands “hurray!” when you’ve done a good job. I love that you are just as proud of Micah’s accomplishements as you are of yourself. (Today, you gave Micah a huge smile and an unprompted “hurray!” when he did a summer-sault. Then, again later when he burped.)
You have brought such joy into our lives. I love you so very, very much, and I really am blessed to be your Mommy. I wouldn’t change you for the world. But, you have already changed us for the better, and I know that you will continue to do so for a long time.
Today we celebrate you. All that you are, all that you’ve been through already, and all that you will become. You are our Matthew – our “Gift from God,” and we are thankful beyond words for the gift that you are.