This is the sweet face that greeted me this morning. Little J, so full of Love and Joy and Energy. I know that there is an Army of Angels that follow this little Guy around and keep him as safe as they can, as my Sister Carrie told me "They do watch out for their own" and he is definitely an Angel, 99% of the time. Looking back at all this little boy went through in the first year of his life, and the fact that if he had been born into the majority of other families he would not have gone through any of it, I am amazed that he picked our family to be a part of.
J was born with a congenital birth defect, Hypospadias. It was genetically inherited and we were assured it was easy to fix. At the end of January 2009, when he was just 10 months old, we took our little boy to the hospital where he underwent a 2 hour surgery. He had some trouble coming out of Anesthesia but other than that it seemed that everything went fine. That is until 1 week later.
It was Tuesday, February 3rd, 2009. As usual Daddy was at work and it was just Mommy and Baby J at home. As I began to change J's diaper that morning I noticed something was different. I decided that the Reddish Brown color of his diaper could only mean one thing, that there was blood in his urine, and I didn't feel like that was a good thing and so I called the Surgeons Office immediately. I was assured that this was normal, that about a week after surgery blood clots start to fall off and they most likely dissolved in his bladder making it seem like he had blood in his urine. This made sense, that is, until a few hours later when I was changing another diaper and discovered that he was actively bleeding. I rushed over to a neighbor who is a nurse, the bleeding stopped and she did her best to share her understanding with me. She had never cared for a patient who had had J's surgery but she did know that it was considered normal for tonsillectomy patients to have bright red bleeding from the surgery site about 1 week after surgery, because that is when the clots fall off and reform, it is all part of the natural healing process. Being very smart she also counselled me to call the surgeons office again. This time the office told me that as long as pressure is applied and the bleeding stops within a few minutes everything should be fine. This answer did not calm my troubled mothers heart. We had 2 more episodes of bleeding prior to bed time. I told Ken that if my baby cried that night I was going to check on him, and somewhere between 2 and 3 AM I heard a little cry. My heart broke, my baby was covered in blood, all I could do was scream for Ken.
Wednesday, February 4th, 2009 is a blur. A trip to the closest ER. An ambulance ride from there to Primary Children's Medical Center and hours in their ER while doctor after doctor asked questions. Questions about what happened and questions about My own and Ken's family medical histories. Finally J was admitted to the Rapid Treatment Unit for observation. We were there at Primary Children's for about 36 hours.
So you saw what little J looked like this morning, here is what he looked like 1 year ago, in his hospital crib.
Several Nurses made comments about how happy he was, they love children there but the average patient isn't necessarily happy to be there. Baby J did his best to brighten the day of anyone who came into his room, though he quickly became leery of people with needles. It became clear really fast that J was not a Hemophiliac, the first few times they tried to draw blood to run any type of test, his blood clotted before it even got to the bottom of the test tube. He never had an episode of bleeding while in the hospital and by the time he was released to go home all we knew was that he most likely had a blood disorder, which was aggravated by the Ibuprofen he was given for pain control after his surgery. He had lost quite a bit of blood, 1/4 to 1/3 of his entire blood volume and he was now anemic. More blood test needed to be drawn and we would need to wait a few weeks for a final diagnosis.
The diagnosis came back as Von Willebrand's Disease, an inherited blood disorder that no members of our families had ever been diagnosed with. It was the perfect storm of genetic disorders, the Hypospadias and the Von Willebrand's. It still makes me want to cry sometimes, to think about how close I came to losing my son. At least it felt way to close to me.
As this year has past I have had little glimpses of understanding. One Sunday during a church meeting I was overcome by the realization that I had not been alone in my desperate prayers that morning as we drove the the ER. I remembered sitting in the back seat of the car holding my son's hand, constantly praying for his protection, that we would be able to get him the help he needed. As that memory played out in my mind I suddenly knew that long ago, during a different agonizing prayer, My Savior, My Son's Savior had also prayed for him. I understood so deeply at that moment that the power of the Savior's Atonement not only had the power to save us from Sin and Death, but that during his prayer as he thought of each one of us, each of his brothers and sisters, he felt all their pain, of every kind. My Savior thought of me, and saw that moment in my life, felt my pain with me, carried my burden with me. Our Savior thought of my Son, felt his pain and prayed for him. We were not alone and we never will be. That was a powerful impression, an amazing glimpse of the Love of God.
Another glimpse I have been given is of the Man my son will someday be. Several times as I have prayed, or held him trying to comfort him during the night, I have been given a glimpse of the Spirit who inhabits my Son's tiny little body. He is small now, but someday he will grow and when he does, I know he will be a Good Man, a Man of God. I don't know what he will do with his life but I know whatever he does, he will do it well.
And most recently I have come to realize that little J knew what he was in for, when he came down to earth. Like I said before, I believe he knew that these specific trials would be his, would be ours. Unlike me, he was young enough and close enough to heaven that he also knew everything would be fine. The Angels would be there for him, His Savior was there with him. Someday, like all of us, he will forget these things and he will have to relearn them, slowly and faithfully. But for now, while he is still small and doesn't talk, I believe he still remembers being with God.
I am grateful for this past year. I pray for many more years. There are many things that little J has taught us that will bless and possibly save the lives of his siblings. Thank You sweet J, for being willing to be our genetic Guinea Pig. Thank You for being My Baby.
3 comments:
so tender, thanks for sharing Kate.
I truly believe that the angels who attend our children have wonderful visions to show us whenever we are so tender and willing to see. Although it was a terrifying experience, you gleaned such precious insight as a result to treasure AND your beautiful boy to keep!
I had no idea he had gone through any of that... what a sweet little boy. Wonderful entry... but it did make me tear up a little.
I'm so glad I tuned in today. Thanks for sharing. Amazing thoughts.
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