As rivers, the nearer they come to the ocean whither they tend, the more they increase their waters, and speed their streams; so will grace flow more fully and freely in its near approaches to the ocean of glory. -John Owen
By God's grace Magdalena is here with us today, her 146th day on the earth. Lately my eyes have welled up just looking at her sleeping knowing that it is all because of God I am able to still look at her. She is a miracle. Last Christmas we joked about how crazy the future holidays would be with my parents having five grandkids (there were only three at the time), and Lori reminded me of the tears I shed after finding out Magdalena's diagnosis and the reality that what I had previously said would not happen. God has allowed us one holiday with our sweet daughter and in the next few days we pray that he will give us another, one to celebrate Christ's birth. I don't know why God chose Magdalena, but he has given her a special task on this earth and although we have seen how much she can do, God is still using her to change our hearts. She changes me daily. Even as I watch her now to be sure that she is ok, I stare at her chubby, little arm as it rises and falls with each breath that she takes and I am overwhelmed with happiness.
When we first arrived home I didn't know how to care for her. I was way overprotective, and my rules for everyone that surrounded her seemed overbearing, but thankfully everyone was patient with me as I learned Magdalena's special needs and how to specifically care for her. Now, I am still overprotective but I like to allow everyone to enjoy her as much as I do. Noah and I are researching more about living with a T18 baby and how best to care for them. This can be a problem because each one is has different needs and there are not enough cases to explain. Just as I do T18 babies' lives are counted with days, even if they live beyond a year because each day is a huge blessing to have. Here is some information that reminded me of God's grace and how each day is a blessing.
95% of T18 babies die in utero (1 in 3,000 conceived are T18, 1 in 6,000 are livebirths)
Of liveborn infants, only 50% live 2 months
5-10% will celebrate a year of life
Every life has an effect on this earth, even those who may never be held by their mother. Once a mother always a mother. God has a special purpose for these babies.
Tomorrow morning we will have a test done so that the speech therapist will know how to best help Magdalena take her bottle better and maybe food?!