Leah is 19 days old!
How precious each life is.... no matter what that child will or won't be able to do. I feel so convinced that Leah's life is truly being sustained by our prayers, as there are just so many challenges her body is facing. Yet the ability of a sick little child to impact many is so great! Each one has such purpose and through a willing family, can be used in mighty ways. It's the fear and pain that come that I've seen for myself can cause such paralysis in my own thoughts and life. Leah needs me to be strong now, but I know that I'm not strong enough on my own. God is providing the strength and support I need. I've had people volunteering to take several hour shifts to help out with Kyla, and holding Leah so that I can "rest" and have some time to myself now that Luke is back at work.
I know that you all are cheering right along with me for these 19 days our family has gotten with Leah. Upon bringing Leah home, I had expected our grieving to stop, and there to be only joy and happiness....but that was honestly not the case for the first few days. Each time she stopped breathing, I honestly felt myself bracing for it to be her last breath. The paranoid feelings took root so deeply and so quickly....how can a parent watch their child die! Our reality is that we still know our time with Leah will be very brief, and so my daily prayers for God to cast out my fears are being answered. I know her body is VERY weak, and that her condition is not curable. I know that I cannot be holding her at every moment, since I need to take care of Leah's Mommy too.....so that I can take care of her better! I know that I cannot plan the circumstances surrounding her passing anymore than I can prevent it from happening in the first place. Once again, I am at a place of pure mercy to God's control and power.
As I mentioned, Luke returned to work on Monday, and we've been able to each get several good hours of sleep each night. We've moved Leah into her own room, and are up with her every few hours, in shifts, with a few hours of "unsupervised time" for her to rest alone. It's honestly hard to tell when she's awake vs. asleep as her eyes have begun staying open while she sleeps (we think) and the seizures come on out of deep sleep now as well as when she's awake.
We just got a call that Leah's full chromosome analysis came back normal. Now we are fully shifting gears from 5 months of research and study about Trisomy-13 in which the brain malformation of Holoprosenchephaly (HPE) was secondary, to just now focusing on the HPE as the severe disability. With this condition being even more rare than trisomies it's hard to get much info about it. And since bringing her home, I've had NO time to look anything up online. My sister has sent us some things, but it seems this condition is much less clear in terms of any actual prognosis or life expectancy. It more just seems like each child can do/not things do based on their own unique brain malformation.
Kyla's now come down with a nasty cold, so now I'm trying to keep Leah from catching it, which all the nurses say could just be too much for her body to handle. Once again, I’m praying for God to remove my fear and just leave me with His peace and the reality that I can trust Him.
I am also in awe of my husband, and the leadership God has granted him for our family during this time. Luke is my best friend, and even in this, He is so steadfast in His faith that it is such an example to me. I can definitely see why God picked Luke to be Leah's Daddy, as he is so confident in providing her medical care (even reinserting her feeding tube by himself last week). He is so patient with me and all the emotions and stress I'm experiencing and so loving towards both of his little girls! I wish I could depict how funny it was seeing Luke watching a basketball game on the couch this past weekend, with Leah propped up next to him. As he ate a chip he pretended to pass one over to her....and it was just so amusing to see how comfortable both of them are together!
God is growing our whole family during this time with Leah. We are trying our best to honor Him with our attitudes and actions....and to be a witness to other's of how truly Good our God is! We are in the process of building a monument, which will be a reminder in our family's life that God is with us even in the hardest of times. And from that, we can know that there will be no place or circumstance that could come our way in the future, that He will not once again carry us through. May our story be an encouragement to you in your valley's of life. I know we all are feeling the reality and fear of these unstable economic times, and the impact is being felt harder by some. I pray God would cast out all our fears, whatever they may be. And that He's bring us His perfect peace, that He is good, and that we can trust in Him alone.