Leah is in need of extra prayers today! She'll be one month old tomorrow, but her tiny body is just facing even more challenges now compared to before. New symptoms have developed, including Diabetes Insipidus, which is caused by a lack of the hormone vasopressin. Vasopressin is an antidiuretic hormone that is produced by the hypothalamus gland in the brain and stored by the pituitary gland. In the body, vasopressin limits urine output by increasing the concentration of the urine. Without vasopressin, the kidneys cannot function properly and the body experiences rapid water loss in the form of diluted urine. Then in a vicious cycle, this rapid water loss causes people with this disorder to become extremely thirsty.
Our precious Leah's body is not able to stay properly hydrated, no matter the amounts of fluid she is given. On top of that she is now sick, with a very nasty sounding cough and junk in her lungs. Because she has low muscle tone, it is a challenge for her to clear her lungs, as she is not strong enough to cough productively as you or I to prevent pneumonia from settling in. And on top of that, she is not able to keep her feedings or medications down. When she spits up her medications, then all the assistance her body has been receiving the past 4 weeks to function more properly is lost. As you can imagine, this creates a vicious cycle, thus increasing her seizure activity as well.
As her parents, we know fully that we have done and will keep doing everything possible that can help Leah. Yet, as we’ve known all along, her time with us will be very brief. And now it seems clearer that her body cannot go on like this for much longer. Yet, we still don’t know if that means hours or days. In light of this please pray for the following things:
For God to be with Leah and bring her comfort as her body may begin shutting down
For God’s goodness to be seen even in the events of her body passing away and her spirit being received into Heaven
Strength beyond that which is humanly possible for Luke and I, as we continue to care for Leah and watch her body struggle daily as she fights to stay with us
For Kyla, who loves her baby sister so deeply – that she’d learn to trust God through our family’s circumstances
That we could have God’s perspective on Leah’s life and the blessing that He has given us
Even with all the challenges of these past 5 months, I have never before felt so blessed and so provided for by my God! The Lord gives and the Lord takes away…..blessed be the name of the Lord! The words of a song by Matt and Beth Redman has become my anthem these past months. You can click here to hear it: http://www.youtube.com/watch?v=7Qp11X6LKYY
Blessed be Your name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name
Blessed be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed be Your name
Pre-Chorus
Every blessing You pour out
I'll turn back to praise
When the darkness closes in
Lord still I will say
Chorus
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Verse 2
Blessed be Your name
When the sun's shining down on me
When the world's all as it should be
Blessed be Your name
Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name
Bridge
You give and take away
You give and take away
My heart will choose to say
Lord blessed be Your name
Sunday, April 19, 2009
Wednesday, April 8, 2009
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.
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.
Thursday, April 2, 2009
Photography of Leah
http://leahgracejarmer.shutterfly.com/
Many of you have asked us to share more photos from our journey over these past 13 days. Here is a link to see more photos. Leah's Aunt Charissa took all of these beautiful photos, and they capture the love and memories that we've been able to create with Leah.
Leah had her 2-week check up with her Pediatrician today, and she currently weights 5lbs. 14oz. She is still hanging on, and allowing us more time to love her and care for her. It does feel like she seems to honestly be declining, in terms of her strength and health. Her seizures are becoming much stronger and frequent, and we aren't sure how much longer her body will be able to handle such stress. Her body isn't able to get enough oxygen during these seizures, and that is very hard on her heart.
As you can imagine, watching your own child go through this is beyond hard. We love her so much, and of course do not want to have to say good-bye. Watching each seizure come and wondering if this breath will be her last causes such anxiety and concern. We need so many continued prayers for our family's peace and trust that God is in control, and that He is with us. We're fully accepting that the best place for a sick little girl is Heaven. Yet the reality is still so bittersweet as we want more time to hold her, but can see that her body is so weak.
Also prayers for Kyla, who loves her baby sister so very much. I couldn't have imagined how deeply a 3-year-old could care for a tiny baby, and watching it is simply beautifully touching. Whenever Kyla walks into a room the first thing she asks is, "Where's baby Leah?". She wants to make sure Leah is ok. At lunch today Kyla said that she thinks Leah wants Jesus to come and hug her. She knows that when Leah dies she will be with Jesus in Heaven, but her next comment was if we could drive and visit Leah in Heaven.
Yesterday we put the girls in matching Easter dresses, and it was simply lovely! I painted both their toenails, and yes, even Leah got purple sparkles. And this morning Leah got to go to Kyla's playgroup and meet all the other Mommies and kids.
God is teaching us to trust Him moment by moment. He is accomplishing His will through Leah's life, and we are so thankful to be her parents.
http://leahgracejarmer.shutterfly.com/
Many of you have asked us to share more photos from our journey over these past 13 days. Here is a link to see more photos. Leah's Aunt Charissa took all of these beautiful photos, and they capture the love and memories that we've been able to create with Leah.
Leah had her 2-week check up with her Pediatrician today, and she currently weights 5lbs. 14oz. She is still hanging on, and allowing us more time to love her and care for her. It does feel like she seems to honestly be declining, in terms of her strength and health. Her seizures are becoming much stronger and frequent, and we aren't sure how much longer her body will be able to handle such stress. Her body isn't able to get enough oxygen during these seizures, and that is very hard on her heart.
As you can imagine, watching your own child go through this is beyond hard. We love her so much, and of course do not want to have to say good-bye. Watching each seizure come and wondering if this breath will be her last causes such anxiety and concern. We need so many continued prayers for our family's peace and trust that God is in control, and that He is with us. We're fully accepting that the best place for a sick little girl is Heaven. Yet the reality is still so bittersweet as we want more time to hold her, but can see that her body is so weak.
Also prayers for Kyla, who loves her baby sister so very much. I couldn't have imagined how deeply a 3-year-old could care for a tiny baby, and watching it is simply beautifully touching. Whenever Kyla walks into a room the first thing she asks is, "Where's baby Leah?". She wants to make sure Leah is ok. At lunch today Kyla said that she thinks Leah wants Jesus to come and hug her. She knows that when Leah dies she will be with Jesus in Heaven, but her next comment was if we could drive and visit Leah in Heaven.
Yesterday we put the girls in matching Easter dresses, and it was simply lovely! I painted both their toenails, and yes, even Leah got purple sparkles. And this morning Leah got to go to Kyla's playgroup and meet all the other Mommies and kids.
God is teaching us to trust Him moment by moment. He is accomplishing His will through Leah's life, and we are so thankful to be her parents.
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