Amber is doing great, a few minor bumps, but great. I haven't seen her in a two days because I have bronchitis... yeah me. I should be able to see her tonight after 24 hours of antibiotics. Kurt says she looks good and is resting. The nurses say she has a lung infection that should clear up quickly, they tested it and found the right type of antibiotics that will clear it up. There is another child that needs surgery so she will be transferred back to Orange CHOC Sunday or Monday to finish recovery there. I think it will be better since she will be closer. They were unable to extubate because she stopped breathing when they tried, they didn't seem too concerned about it due to her recent surgery... will ask more tonight. Kyana has a cold and Taylor turned 5 today, her stitches come out tomorrow, Sunday.
I know some of you are wondering about the brain thing. I am sorry to have dropped a bomb on you without information. Basically, when she was about two weeks old they did a MRI at Orange CHOC which found an old blood clot and more fluid on the right ventrical of the brain. The doctors said it was too soon to say but it could affect her cognative learning, muscle mass, etc... too soon to know. Before her surgery they had to make sure the brain was stable for surgery to avoid brain damage, they found the clot and the excess fluid. This time they didn't candy coat it, they actually said we needed to do more tests. First, the dried up clot means a vein attached to the brain and to the skull pulled away causing the bleeding. (Don't know how many of these are around the brain or if it's just one). Second, they are not sure if the brain is growing, there are signs of excess fluid outside the brain between it and the skull. Third, there is significant fluid in the right ventrical of the brain, not the small amount projected two months ago. What does this mean? She can have a list of problems from growing, walk, talking, learning to eating, feeling, understanding. All this the night before heart surgery. It was hard to be grateful for all the positive that came from her heart surgery thinking about our next step. Her surgery was such a success in every way possible but my heart and mind could not stop thinking about what her life will be.
My mom keeps reminding me that she is a miracle and that this brain thing will also clear itself soon. A miracle, what if I can only have one miracle, was it her birth? Her heart surgery? Her, all together no matter how many bumps are on the road? How do you keep going? How do you find trust, faith, and grace in so many daily changes and daily challenges?
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My sister, as each day is unknown to us, each day is unknown to Amber. We don't know what the next day will bring, but we wake up the next morning with the opportunity to see what it will bring. And although some days may bring challenges more than others, we again go to sleep with the hope, faith and grace knowing that tomorrow will bring a new day, a better day than the previous. We have HOPE cause that's what we need to look forward to tomorrows. We keep our TRUST and FAITH in God as he is the only one that holds our lives in his hands and Amber give us GRACE every time we see, feel and think of her. You don’t have to search for them as they are within your reach. I guarantee that whenever you close your eyes, they are there. So whenever times get rough and you are clouded by doubt, take a deep breath, close your eyes, and smile as things will become so much clearer and this overwhelming strength will overcome you. I love you sister! I will always be here for you! Melanie
ReplyDeleteAs it happens, I do not have perfect understanding of how the Lord works and thinks in different situations; certainly, it would be my pleasure to lay out all of the details for you (or for myself!). But, I do know that since tomorrow is not promised for any of us, we are blessed if we can enjoy the love and wonders of life that we have today and right at this moment. Your mom is right, Amber is a miracle, but the point is not whether you only can have one, nor whether the miracle was her being born, or making it through surgery, or that she is well today, b/c the miracle in and of itself is not the thing to hold on to. Both miracles and our general life experiences reveal the reality of the Lord and His ability to affect the lives of men. It is this newfound understanding that you can hold on to. Similarly, the love that has been revealed -- of your family and friends, that you have for one another and for Amber, its resiliency and strength -- is another thing that you always can hold on to for encouragement. It too reflects the Love of God (the point!) that touches our lives and enables us to make it day by day. You are blessed to have perfect knowledge of at least that much -- of its existence and sufficiency -- whether it is a good day or bad, whether you are facing a hurdle or enjoying a quiet moment. So many people go through life never having that bit of understanding, and no matter the end, Love will be what gets you through it all and thus is the greatest gift of all! Keep your head up Jessie! I hope that Kyana is doing better and that you all enjoyed Taylor's birthday! AJ
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