I was just emotionally able to take down the formula instructions for going home from the NICU from where I had posted them in the kitchen. I have wanted to for a couple weeks. I would think I was ready, but then by the time I could get over to the cabinet to pull them down, I had lost the nerve.
I also took down the sweet sticky notes my sister Ellen brought with a meal.
Some hurts take strangely long to heal. Why were those things so difficult to take down? I haven't used those formula instructions beyond the first month or so that Ilse was home. They were terrible instructions.
Maybe I kept them up there to remind me of a few things...
Like, don't be arrogant. Why (?!?!) did I have the dietician give me formula instructions in grams instead of teaspoons? Because I had a scale and I wanted to be exact. Arrogant.
Like, how hard it was to get up in the night and pump, mix a stronger dose of milk, clean up barf, stay awake with a screaming baby and not know what to do, be angry at Tim because he was asleep... :)
I don't know. Taking them down is a definite sign of healing. My baby is almost a year old. It is time to let a few things go. I have systematically been making piles of clothes to hand to baby Livvie, and if I keep the piles around a few extra days instead of rushing them out the door, I inevitably find myself able to add clothes I previously had decided to keep as memories. That nightgown that I bought especialy for Ilse.... I had Marcus bring it to the hospital thinking we would dress Ilse in it and come home. She was never able to wear it, but more than likely little Livvie can, and now I am ready to pass it to her.
Healing comes at the strangest times. Maybe it's when God thinks you need an extra dose of His grace and mercy. Maybe that's when He takes some pain away. Maybe all the pain will never be completely gone, but this is certain, cuddle time with Ilse is more important to me than time spent organizing her old clothes or even pumping milk for her, even if the loss of those things hurts just a little.
I am a recipient of God's generosity on a grandiose scale. His gifts never cease to amaze me, even when the gift is something as simple as the ability to take down formula instructions.
He is an amazing God and He heals all our hurts in His own time.
Showing posts with label God's Faithfulness. Show all posts
Showing posts with label God's Faithfulness. Show all posts
Tuesday, April 3, 2012
Friday, February 24, 2012
Good and Bad, Happy and Sad
Today was a day of happy moments and also sad news. I am really struggling since the bad tends to overshadow the good. My poor, poor little baby.
First the good:
Today in therapy Ilse ate squash, off a spoon. I punctuate it that way to give the words 'off a spoon' the weight they deserve. That is huge. We started Ilse on just tastes of milk when she was in the NICU, and she didn't do well. Her upper lip would turn dusky, which told the hospital OT that Ilse was struggling to keep her O2 sats up when she had something in her mouth. We progressed from tastes to drops of milk, to small syringes of milk, and then to trying a spoon. She couldn't do the spoon without horrible gagging. Then we tried letting her eat off my finger, and for some reason she didn't gag that way. Then today we tried a different spoon, and she ate squash off it. She ate squash off a spoon. I am so praising the Lord about that. It is truly momentous for a child like Ilse to eat squash off a spoon.
Also in therapy today Ilse sort of sat. She actually totally sat! Our therapist put Ilse's legs a bit bunched up, and leaned her forward resting on her arms, and Ilse sat that way, leaning forward on her hands. She was sitting on her bottom, leaning forward on her arms. Amazing.
Furthermore, Ilse decided today that she would put weight on her forearms in a crawling position. Ilse participated today to be able to do all of this! She didn't hang her head during her therapy today at all. Usually she just hangs her head, won't talk, won't smile, and won't participate. But today I guess the Lord knew I would need some encouragement.
The bad news is that we got the results of some bloodwork we had done on Monday, the day of upwards of ten blood pokes and horrible bruising. While Ilse's metabolic panel came back normal and her cholesterol is up ten points (YAY!), her immunological testing came back all messed up. I believe what the pediatrician said is that Ilse seems to have an IgG deficiency. I confess, when I heard what she said next about bone marrow and a hematologist/oncologist, I had a hard time remembering the exact word that went with IgG, but deficiency is really the only word that makes sense. They are referring her to a hematologist/oncologist for a bone marrow biopsy, because the blood testing has gone as far as the immunologist can take it, and now deeper testing needs to be done. I know the doctor stressed the fact that Ilse is going for the hematology side and not the oncology side, but the minute I heard those words my heart just got so heavy and I cried. My poor little baby. If they have to actually do that biopsy, she will have to be anesthetized which likely means an intubation, which any SLOS mom knows could result in oral aversions, which is what we have been working against all this time. That made me cry. Thinking about a needle in my baby made me cry. Tim just had his MRI with contrast, and the spot where they injected that dye into the joint is all bruised and sore. He was hurting, and I don't want my little baby to feel like that. And as I sat there with tears on my face... It's not like I was sobbing or anything, just teary.... all I could say to the therapist was, "God made her blood. GOD made her blood."
He made her genetic mutations; He made her immunological deficiencies. He made her exactly the way she is for His glory.
I am having a very hard time, though, because all those good things that she did today tend to get overshadowed by this one very bad thing and all things that go with an immune deficiency. The having to tell people they can't touch her, certainly can't breathe on her, have to wash their hands before they touch her, etc.. I can't take her to my sister-in-law's one year adoption anniversary because it is at the germ cesspool Chuck E. Cheese, I can't let the boys go because they could bring RSV home on their clothes.... And the list goes on.
The bad hurts. I hurt for my Ilse. She hurts. But when there is good, when Ilse ate off a spoon today and when she put weight on her arms..... and when I get Ilse snuggles, then I feel God's mercy and grace. Those things are His mercy to me, and I am so thankful for them.
Please pray for us, because this is a new layer of struggle. Pray for my baby to keep gaining weight, and that the diarrhea I think is about to begin really won't, and that I will be awake enough to get up in the nights and feed her as many times as I need to so she can grow.
Here is Ilse reading a book during therapy. She was fascinated with the black, white, and red pictures. She actually turned the pages herself with no prompting. And she turned them from the right to the left, just like a true Foster descendant. :)
First the good:
Today in therapy Ilse ate squash, off a spoon. I punctuate it that way to give the words 'off a spoon' the weight they deserve. That is huge. We started Ilse on just tastes of milk when she was in the NICU, and she didn't do well. Her upper lip would turn dusky, which told the hospital OT that Ilse was struggling to keep her O2 sats up when she had something in her mouth. We progressed from tastes to drops of milk, to small syringes of milk, and then to trying a spoon. She couldn't do the spoon without horrible gagging. Then we tried letting her eat off my finger, and for some reason she didn't gag that way. Then today we tried a different spoon, and she ate squash off it. She ate squash off a spoon. I am so praising the Lord about that. It is truly momentous for a child like Ilse to eat squash off a spoon.
Also in therapy today Ilse sort of sat. She actually totally sat! Our therapist put Ilse's legs a bit bunched up, and leaned her forward resting on her arms, and Ilse sat that way, leaning forward on her hands. She was sitting on her bottom, leaning forward on her arms. Amazing.
Furthermore, Ilse decided today that she would put weight on her forearms in a crawling position. Ilse participated today to be able to do all of this! She didn't hang her head during her therapy today at all. Usually she just hangs her head, won't talk, won't smile, and won't participate. But today I guess the Lord knew I would need some encouragement.
The bad news is that we got the results of some bloodwork we had done on Monday, the day of upwards of ten blood pokes and horrible bruising. While Ilse's metabolic panel came back normal and her cholesterol is up ten points (YAY!), her immunological testing came back all messed up. I believe what the pediatrician said is that Ilse seems to have an IgG deficiency. I confess, when I heard what she said next about bone marrow and a hematologist/oncologist, I had a hard time remembering the exact word that went with IgG, but deficiency is really the only word that makes sense. They are referring her to a hematologist/oncologist for a bone marrow biopsy, because the blood testing has gone as far as the immunologist can take it, and now deeper testing needs to be done. I know the doctor stressed the fact that Ilse is going for the hematology side and not the oncology side, but the minute I heard those words my heart just got so heavy and I cried. My poor little baby. If they have to actually do that biopsy, she will have to be anesthetized which likely means an intubation, which any SLOS mom knows could result in oral aversions, which is what we have been working against all this time. That made me cry. Thinking about a needle in my baby made me cry. Tim just had his MRI with contrast, and the spot where they injected that dye into the joint is all bruised and sore. He was hurting, and I don't want my little baby to feel like that. And as I sat there with tears on my face... It's not like I was sobbing or anything, just teary.... all I could say to the therapist was, "God made her blood. GOD made her blood."
He made her genetic mutations; He made her immunological deficiencies. He made her exactly the way she is for His glory.
I am having a very hard time, though, because all those good things that she did today tend to get overshadowed by this one very bad thing and all things that go with an immune deficiency. The having to tell people they can't touch her, certainly can't breathe on her, have to wash their hands before they touch her, etc.. I can't take her to my sister-in-law's one year adoption anniversary because it is at the germ cesspool Chuck E. Cheese, I can't let the boys go because they could bring RSV home on their clothes.... And the list goes on.
The bad hurts. I hurt for my Ilse. She hurts. But when there is good, when Ilse ate off a spoon today and when she put weight on her arms..... and when I get Ilse snuggles, then I feel God's mercy and grace. Those things are His mercy to me, and I am so thankful for them.
Please pray for us, because this is a new layer of struggle. Pray for my baby to keep gaining weight, and that the diarrhea I think is about to begin really won't, and that I will be awake enough to get up in the nights and feed her as many times as I need to so she can grow.
Here is Ilse reading a book during therapy. She was fascinated with the black, white, and red pictures. She actually turned the pages herself with no prompting. And she turned them from the right to the left, just like a true Foster descendant. :)
Wednesday, February 1, 2012
so much sadness
I am part of a group on Facebook for parents of children/adults with SLOS, and today a lady posted about her sweet baby Aaron who is dying today. My heart just broke for them! I can't imagine saying the words, "spending the last moments with my son." God created all these children exactly the way he wanted them, and yet, it seems so cruel sometimes, especially when it ends in the death of a precious little baby.
It hurts to think of it, but my darling Ilse is a picture of the sin in the world, and the compassion we all show her is a picture of God's compassion for us. I wish I could remember where I read that about God's compassion.... it is so true. Every time we show love to one of the least of these, and children with SLOS are certainly-- in the world's eyes at least-- the least of these, we show love to the Savior and we demonstrate His love for us.
I firmly believe that those who are incapable of believing are not guilty of the sin of unbelief. I tell Ilse all the time that if she can never understand about God's gift to her of eternal life, our God is merciful. I believe she will understand, but there are certainly those who mentally can't or who never even get the opportunity. I believe that Little Aaron, then, will have every tear wiped from his eyes today, and he will have no more pain.
His family, though, will have much pain. Please pray for them.
Monday, January 30, 2012
Raphael's Birth
If you are just coming to my blog, before you read this post, please read this one.
"If it were up to me, I'd write this story differently."
That phrase, and shades of it have been spoken in my soul many times as I've walked this road God has paved for me.
Ingratitude. Distrust. Looking past the lush mountain God has given and fixing my eyes tight on the speck of dirt in the distance...what it seems He is withholding. I want to push His hand. Force it. Rush Him. Demand my way.
2:30 a.m. Mama Emmanuel is in labor. Come. This is her fifth baby. Her uterus has been around the block a time or two. It knows what to do.
The birth team hurries to the maternity center. Mama Emmanuel is in pain. She is almost dilated enough to push. Any time now. Coffee brewing.
"Maybe...maybe you don't want to change the story because you don't know what a different ending holds."
10 hours later the baby is still tucked safely inside his mother. 12 hours later we sit waiting, confused. This labor unlike any other I've seen before. The baby's heartbeat is healthy and strong. Every few minutes we check. Baby's heart....the sound of horses galloping. Mom's body has been ready for hours. We've all been ready for hours. Why won't this baby descend? Fifth baby. This does not make sense. We watch Cookie and Beth, wise midwives and women, seek God for guidance. Wisdom whispers, "Wait."
Farmers and ranchers are rarely nonspiritual. You can't work this land, hold the earth in your hands, and not make spiritual connections. Seeds. Harvest. Weeds. Shepherding. Life. Death. "Farmers, we think we control so much. Do so much right to make a crop. And when you are farming,...you are faced with it every day. You control so little. Really. It's God who decides it all. Not us." Seasons can't be rushed. Man can't figure out how to empty the sky or how to close it up. The farmer can labor until he falls over, but he can't control the frost. God's hand is infinitely stronger than our own.
In the same way, you can't consistently be around natural labor and birth without seeing our own human stories wrapped up in all that struggle, gasping, pain, and ultimately joy indescribable. You can't see the struggle, frustration, exhausting labor, and exhilarating release and not think profound thoughts about life, this world, and the God that created all of it. A labor and birth is like an entire life's story you watch in one day.
In real life and during a birth, it is tempting to want to rush the struggle, skip the pain, speed it up already...take the pen in our hands. In Haiti, where health care is limited, being impatient and rash seems riskier. Haiti is notorious for shaking us, forcing us to come face to face with our faith...or our lack of it.
"There is a reason I am not writing the story, and God is. He knows how it all works out, where it all leads, what it all means. I don't. Maybe...it's accepting there are things we simply don't understand. But He does."
I've never seen a baby born with such fast force. He was not pushed out. He was launched. One minute it seemed as though Mama Emmanuel wasn't even in hard labor. The next thing we know, the midwives' hands are full of new life. A baby boy born with a chord wrapped tightly around his neck two times. The mystery. All revealed in a matter of startling moments. A baby that could have hung himself..if he had descended...if he had done what we wanted. If the midwives had rushed it, intervened, taken matters into their own hands. While we were frustrated with a labor that seemed to have stalled for hours, with a mother that seemed to have forgotten how to push, annoyed that nothing made any sense, aware of how limited our options are if things did not progress, the One that knit that little life together was faithfully holding him. Holding the midwives. Holding all of it.
In that moment I was reminded that it is by God's grace that His grip on that pen is strong. Though we snatch for it, in frustration we grab and demand to write the next chapter or rip out the last two...His hand is strong. Grace keeps the pen out of our hands. He writes our stories at just the right pace.
You have never seen a more weepy room of women. Tired, humbled midwives. Tired, relieved mother. All of us. Incredibly thankful.
God seems to get bigger and bigger and we feel smaller and smaller with every birth.
"There is a reason I am not writing the story, and God is. He knows how it all works out, where it all leads, what it all means. I don't. Maybe...it's accepting there are things we simply don't understand. But He does."
You can read more about Mama Emmanuel's life and how her story and faith is forever growing ours:
Mama Emmanuel
Saturday Labor
God sparing her son today is only one chapter among many that continually turn our hearts toward heaven.
All words in italic belong to Ann Voskamp and are found in her beautiful book, "One Thousand Gifts.
The post below is a reposting of Heather Hendrick's telling of the birth of little Raphael. See the original here.
Grace: God is the Writer of Our Stories
photo credit: Joanna Howard
"If it were up to me, I'd write this story differently."
That phrase, and shades of it have been spoken in my soul many times as I've walked this road God has paved for me.
Ingratitude. Distrust. Looking past the lush mountain God has given and fixing my eyes tight on the speck of dirt in the distance...what it seems He is withholding. I want to push His hand. Force it. Rush Him. Demand my way.
2:30 a.m. Mama Emmanuel is in labor. Come. This is her fifth baby. Her uterus has been around the block a time or two. It knows what to do.
The birth team hurries to the maternity center. Mama Emmanuel is in pain. She is almost dilated enough to push. Any time now. Coffee brewing.
"Maybe...maybe you don't want to change the story because you don't know what a different ending holds."
10 hours later the baby is still tucked safely inside his mother. 12 hours later we sit waiting, confused. This labor unlike any other I've seen before. The baby's heartbeat is healthy and strong. Every few minutes we check. Baby's heart....the sound of horses galloping. Mom's body has been ready for hours. We've all been ready for hours. Why won't this baby descend? Fifth baby. This does not make sense. We watch Cookie and Beth, wise midwives and women, seek God for guidance. Wisdom whispers, "Wait."
Farmers and ranchers are rarely nonspiritual. You can't work this land, hold the earth in your hands, and not make spiritual connections. Seeds. Harvest. Weeds. Shepherding. Life. Death. "Farmers, we think we control so much. Do so much right to make a crop. And when you are farming,...you are faced with it every day. You control so little. Really. It's God who decides it all. Not us." Seasons can't be rushed. Man can't figure out how to empty the sky or how to close it up. The farmer can labor until he falls over, but he can't control the frost. God's hand is infinitely stronger than our own.
In the same way, you can't consistently be around natural labor and birth without seeing our own human stories wrapped up in all that struggle, gasping, pain, and ultimately joy indescribable. You can't see the struggle, frustration, exhausting labor, and exhilarating release and not think profound thoughts about life, this world, and the God that created all of it. A labor and birth is like an entire life's story you watch in one day.
In real life and during a birth, it is tempting to want to rush the struggle, skip the pain, speed it up already...take the pen in our hands. In Haiti, where health care is limited, being impatient and rash seems riskier. Haiti is notorious for shaking us, forcing us to come face to face with our faith...or our lack of it.
"There is a reason I am not writing the story, and God is. He knows how it all works out, where it all leads, what it all means. I don't. Maybe...it's accepting there are things we simply don't understand. But He does."
I've never seen a baby born with such fast force. He was not pushed out. He was launched. One minute it seemed as though Mama Emmanuel wasn't even in hard labor. The next thing we know, the midwives' hands are full of new life. A baby boy born with a chord wrapped tightly around his neck two times. The mystery. All revealed in a matter of startling moments. A baby that could have hung himself..if he had descended...if he had done what we wanted. If the midwives had rushed it, intervened, taken matters into their own hands. While we were frustrated with a labor that seemed to have stalled for hours, with a mother that seemed to have forgotten how to push, annoyed that nothing made any sense, aware of how limited our options are if things did not progress, the One that knit that little life together was faithfully holding him. Holding the midwives. Holding all of it.
In that moment I was reminded that it is by God's grace that His grip on that pen is strong. Though we snatch for it, in frustration we grab and demand to write the next chapter or rip out the last two...His hand is strong. Grace keeps the pen out of our hands. He writes our stories at just the right pace.
You have never seen a more weepy room of women. Tired, humbled midwives. Tired, relieved mother. All of us. Incredibly thankful.
God seems to get bigger and bigger and we feel smaller and smaller with every birth.
"There is a reason I am not writing the story, and God is. He knows how it all works out, where it all leads, what it all means. I don't. Maybe...it's accepting there are things we simply don't understand. But He does."
You can read more about Mama Emmanuel's life and how her story and faith is forever growing ours:
Mama Emmanuel
Saturday Labor
God sparing her son today is only one chapter among many that continually turn our hearts toward heaven.
All words in italic belong to Ann Voskamp and are found in her beautiful book, "One Thousand Gifts.
Haiti blogs
As many of you know, I regularly read posts written by missionaries in Haiti. I am going to repost one now written by Tara Livesay at livesayhaiti.blogspot.com. This post makes me cry at the hardships the women over there endure, and it makes me rejoice at the grace God has shown them.
There are many people we have been blessed to meet and learn from in Haiti. Their lives have challenged us, changed us, inspired us.
In our first years in Haiti, when we lived in a rural village, there were a handful of people that impacted us greatly.
After the earthquake there were stories that moved us, wrecked us, inspired us, destroyed us, redeemed our hope, and healed our hearts.
Those faces and stories stay with us everywhere we go. We carry the lessons we learned from these beautiful souls close in our hearts.
One of those stories is that of "Mama Emmanuel".
The woman pictured here has impacted more lives than she can comprehend. The internet is not a part of her life and words like blogging, facebook, and twitter are not a part of her vernacular. She has no idea how many people know parts of her story. Trying to explain to her that since the earthquake thousands and thousands of people have heard and read about her just makes her laugh nervously. She may think we are kidding. She is unaware of the lives she has touched.
I was in Beth's office one day looking for a midwifery book when I found an envelope with words people have written about her. As I sat alone in a sunlit room I read two different accounts from medical personnel that came to serve post earthquake. As the gravity of her story hit me for the dozenth time, tears rolled down my face. The words written by people that came to help the wounded heal, but instead found healing themselves, reminded me of the parts of the story I'd forgotten and I want to share them with you tonight.
"You may remember Emmanuel's mother. Two weeks ago, when her son had his last in a series of painful plastic surgeries to reconstruct his face, she stood up in the center of our hospital and sang a chilling acappella Hallelujah, praising God for the gift of her child's life.
Today, she peered down, for the second time, into her family's grave.
She asked us to bring her here. For closure. She did not know what to expect. Would the house be gone? An empty lot, where her life had once been? Or would it be hauntingly unchanged, the moment of her loss frozen in time.
We worried for her. What does a mother do when she encounters such a challenge? Which would leave a more gaping hole in her soul - an empty space where her house and children had once been, or an untouched pile of rubble with the bodies of her babies still trapped within? Would she stand and stare at the base of the rubble? Would she fall on it and wail? Would she start to claw and dig at it? Or would her soul just melt away?
She quietly climbed the untouched rubble pile, peering down into the hole from which three months ago she had plucked her little Emmanuel and beneath which her other children's bodies lay entombed. Then she wandered away silently, over the rubble, searching intently, she later revealed, for a precious memento - a sacred book of hymns that she had carried with her throughout her life. She did not find it.
Nor did she see - or perhaps, she just did not acknowledge the small brown arm of a child that was still visible, pinned under a concrete slab, in the depths of the rubble below her feet.
Tonight, as I left the hospital, she sat with her Emmanuel on a small cot in the corner of the courtyard, staring silently into the distance. I placed my hand on her shoulder in comfort. She stared up at me, with a depth of sorrow in her eyes, despite her ever present smile. I leaned down to hug her from behind and gave her a gentle kiss on the cheek. She lifted a hand to hold my cheek to hers for a moment. Such depths of sorrow. Invisible, searing, devastating sorrow. Just below the surface of a smile.
How does she survive?"
(Written by Barbie - a PA from Alaska)
"In the midst of their pain and continuing suffering there was the presence of a love and caring for one another that I had only glimpsed on my first busy trip. (to Haiti post earthquake as a medical volunteer)
This loving touch brought a peace that covered the hospital environment. This could only have been God's Holy Spirit. What affected me the most about my second trip was this woman named Marie Rose who had lost her children and home in the earthquake. She was caring for her broken three year old son, Emmanuel, in the makeshift hospital. Every night her beautiful singing voice led the worship service for all the patients and caregivers in song, followed by Bible readings. I never understood a word of her Creole, but I understood every word of her heart. With all that she had endured, was enduring, I saw her faith enabling her to do all this, shining from her to all who were around her. The example of her faith gave me a new understanding of what we each should aspire to be."
(Written by Cliff a PT from Oregon)
Mama E. is anxiously waiting to deliver. She is temporarily living in the post-partum room at the Heartline Maternity Center. She and four year old Emmanuel spend their days chatting with the cooks and teen moms, taking short walks, and waiting on the first contraction.
Every single birth is important to us. We grow to love and know the women we work with as their babies develop inside them. We care deeply about each one. They all matter.
Mama Emmanuel holds a piece of every person's heart that has ever met and interacted with her.
The birth of this baby represents so much more than the average birth.
This is a very special delivery.
Out of darkness, light.
Out of sorrow, joy.
Out of weeping, laughter.
Out of death, life.
____________
Mama Emmanuel
There are many people we have been blessed to meet and learn from in Haiti. Their lives have challenged us, changed us, inspired us.In our first years in Haiti, when we lived in a rural village, there were a handful of people that impacted us greatly.
After the earthquake there were stories that moved us, wrecked us, inspired us, destroyed us, redeemed our hope, and healed our hearts.
Those faces and stories stay with us everywhere we go. We carry the lessons we learned from these beautiful souls close in our hearts.
One of those stories is that of "Mama Emmanuel".
The woman pictured here has impacted more lives than she can comprehend. The internet is not a part of her life and words like blogging, facebook, and twitter are not a part of her vernacular. She has no idea how many people know parts of her story. Trying to explain to her that since the earthquake thousands and thousands of people have heard and read about her just makes her laugh nervously. She may think we are kidding. She is unaware of the lives she has touched.
I was in Beth's office one day looking for a midwifery book when I found an envelope with words people have written about her. As I sat alone in a sunlit room I read two different accounts from medical personnel that came to serve post earthquake. As the gravity of her story hit me for the dozenth time, tears rolled down my face. The words written by people that came to help the wounded heal, but instead found healing themselves, reminded me of the parts of the story I'd forgotten and I want to share them with you tonight.
"You may remember Emmanuel's mother. Two weeks ago, when her son had his last in a series of painful plastic surgeries to reconstruct his face, she stood up in the center of our hospital and sang a chilling acappella Hallelujah, praising God for the gift of her child's life.
Today, she peered down, for the second time, into her family's grave.
She asked us to bring her here. For closure. She did not know what to expect. Would the house be gone? An empty lot, where her life had once been? Or would it be hauntingly unchanged, the moment of her loss frozen in time.
We worried for her. What does a mother do when she encounters such a challenge? Which would leave a more gaping hole in her soul - an empty space where her house and children had once been, or an untouched pile of rubble with the bodies of her babies still trapped within? Would she stand and stare at the base of the rubble? Would she fall on it and wail? Would she start to claw and dig at it? Or would her soul just melt away?
She quietly climbed the untouched rubble pile, peering down into the hole from which three months ago she had plucked her little Emmanuel and beneath which her other children's bodies lay entombed. Then she wandered away silently, over the rubble, searching intently, she later revealed, for a precious memento - a sacred book of hymns that she had carried with her throughout her life. She did not find it.
Nor did she see - or perhaps, she just did not acknowledge the small brown arm of a child that was still visible, pinned under a concrete slab, in the depths of the rubble below her feet.
Tonight, as I left the hospital, she sat with her Emmanuel on a small cot in the corner of the courtyard, staring silently into the distance. I placed my hand on her shoulder in comfort. She stared up at me, with a depth of sorrow in her eyes, despite her ever present smile. I leaned down to hug her from behind and gave her a gentle kiss on the cheek. She lifted a hand to hold my cheek to hers for a moment. Such depths of sorrow. Invisible, searing, devastating sorrow. Just below the surface of a smile.
How does she survive?"
(Written by Barbie - a PA from Alaska)
~ ~ ~ ~ ~ ~ ~ ~ ~
"In the midst of their pain and continuing suffering there was the presence of a love and caring for one another that I had only glimpsed on my first busy trip. (to Haiti post earthquake as a medical volunteer)
This loving touch brought a peace that covered the hospital environment. This could only have been God's Holy Spirit. What affected me the most about my second trip was this woman named Marie Rose who had lost her children and home in the earthquake. She was caring for her broken three year old son, Emmanuel, in the makeshift hospital. Every night her beautiful singing voice led the worship service for all the patients and caregivers in song, followed by Bible readings. I never understood a word of her Creole, but I understood every word of her heart. With all that she had endured, was enduring, I saw her faith enabling her to do all this, shining from her to all who were around her. The example of her faith gave me a new understanding of what we each should aspire to be."
(Written by Cliff a PT from Oregon)
 |
| Prenatal visit today |
Mama E. is anxiously waiting to deliver. She is temporarily living in the post-partum room at the Heartline Maternity Center. She and four year old Emmanuel spend their days chatting with the cooks and teen moms, taking short walks, and waiting on the first contraction.
Every single birth is important to us. We grow to love and know the women we work with as their babies develop inside them. We care deeply about each one. They all matter.
Mama Emmanuel holds a piece of every person's heart that has ever met and interacted with her.
The birth of this baby represents so much more than the average birth.
This is a very special delivery.
Out of darkness, light.
Out of sorrow, joy.
Out of weeping, laughter.
Out of death, life.
 |
| Cliff giving Beth a photo of Emmanuel and Marie Rose |
Thankfully, Mama Emmanuel gave birth to a precious baby boy, who she named Raphael, which means 'Healing God'.
Next I will post about the birth of Mama Emmanuel's Raphael.
Thursday, January 5, 2012
Life lately
Please excuse any misspellings... My fingers don't love me today.
Looking back through my posts, I realize that I haven't posted in forever. So much has been going on over here that I haven't had time to do anything... even sleep is a rarity.
Ilse is still on the path to wellness. It might be a long path, especially considering they aren't sure what is wrong with her. They have ordered some specialized immune system tests, and maybe we will know what the results are in about a week. Hopefully it won't take longer than that. A week is already a long time. She did have a bacterial infection, and they had no idea where it was coming from. It could be her mic-KEY button, but we would have to pull it and culture it to know for sure. Unfortunately, we have to wait to do that because they put Ilse on a strong antibiotic, and again, unfortunately, it was obviously too strong for her since it set off a string of night screaming that the world has never seen before. At least my world! Finally we put two and two together and the doctor had us stop the antibiotic. Ilse slept pretty well last night, and so did I. Ahhh. However, I managed to wake up more tired that I had been the previous day when the night before I had barely gotten any sleep at all.
And it was good that yesterday I was more awake, because I didn't have time to even use the bathroom from the morning all the way until six or so. A lifetime of practice finally put to good use. Lol. Yesterday Ilse and I went to get her labs drawn for the aforementioned blood tests. The first lab, at which we had an appointment, told us after we had waited of course, that they couldn't do that test. We hightailed it down to medical city, and yes, I had to talk myself down just in order to park at that place.... and got her labs drawn there. She had two diarrheas while we were at the lab. That made three up to that point, and scattered through out the day where about four more. Needless to say, they are concerned about dehydration and c diff. for this baby. We won't know about the c diff. test for a week also. At the lab they determined that Ilse is too small to do all the tests they wanted, so we have to go back again on Friday to draw for the rest of the tests. One of the tests they did draw for measures how well the white blood cells fight infection. Because, I think it is clear by this point that Ilse has a bit of trouble with infections.
The concern for the immediate future is that her bacterial infection might reassert itself since we couldn't finish the antibiotic. If she gets a high fever or screams uncontrollably, we are to call the doctor ASAP, or, if it is night, we are to go to the emergency room.
Lord willing, Ilse got enough antibiotic to do the trick. Although, if it is the button causing this problem, it will likely reassert itself and we will be in a world of trouble, unless of course, we can have a different antibiotic, although at this point I am pretty wary of too much more medicine.
The rest of our busy day yesterday was spent at UT Southwestern medical center. Tim had his much awaited appointment with a wonderful hip doctor. He was wonderful, and not just because he looked exactly like Mark Ruffalo. He did tons of x-rays, and gave a much better description of the surgery, complete with hand gestures. Tim will plan on having the surgery late May, but first he needs an MRI to confirm what is going on and to see the exact state of his cartilage.
If everything looks good, or bad, whichever way you want to phrase it, he will have the surgery. It doesn't sound as bad as the first doctor made it sound, and regardless of how long the recovery is, having the surgery in state is an automatic bonus. The first doctor said we would have to go out of state, and that sounded atrocious, as you can imagine, since I am determined not to go anywhere without my kids.
The boys are doing really well. They learned about colloquialisms, paramedics, aerodynamics, and oh my goodness, earlier Chris said something so brilliant I wish I could remember what it was.
I finally got Ilse's nose suction machine figured out and in use. Hopefully it will help her. It is too bad that there is no way to decorate it like a squirrel or something. It isn't too cute.
Mom came over yesterday at the drop of a hat and stayed all day long to watch my boys. They mostly behaved. Now my laundry is all folded, my kitchen is clean, and my floors are vacuumed. Thanks, Mom!
I have lots more to write about. However, this post is so long that I had better give your eyes and my fingers a break.
Today, though, if you have a minute, pray for my friend Amber Bowers who is having her third baby today. This is her second daughter, and could also be her second child with SLOS. One baby with SLOS is hard enough depending on how severely the child is affected. Two would be significantly more difficult, and yet, the Lord really does give us the ability to accomplish all that he asks of us. And He has given the Bowers family so much joy. They are truly a wonderful example to me. Each child is a blessing, no matter the way God makes it.
As I have said before, I don't know what I would do with a 'normal' baby-- I have gotten so used to Ilse.
I have another post to write soon, but now, I am going to call in the precious boys who just went out to play, and we are all going to lay down for a nap. It is practically a given though that Ilse will wake up the second I lay myself down.
Better hurry!
Looking back through my posts, I realize that I haven't posted in forever. So much has been going on over here that I haven't had time to do anything... even sleep is a rarity.
Ilse is still on the path to wellness. It might be a long path, especially considering they aren't sure what is wrong with her. They have ordered some specialized immune system tests, and maybe we will know what the results are in about a week. Hopefully it won't take longer than that. A week is already a long time. She did have a bacterial infection, and they had no idea where it was coming from. It could be her mic-KEY button, but we would have to pull it and culture it to know for sure. Unfortunately, we have to wait to do that because they put Ilse on a strong antibiotic, and again, unfortunately, it was obviously too strong for her since it set off a string of night screaming that the world has never seen before. At least my world! Finally we put two and two together and the doctor had us stop the antibiotic. Ilse slept pretty well last night, and so did I. Ahhh. However, I managed to wake up more tired that I had been the previous day when the night before I had barely gotten any sleep at all.
And it was good that yesterday I was more awake, because I didn't have time to even use the bathroom from the morning all the way until six or so. A lifetime of practice finally put to good use. Lol. Yesterday Ilse and I went to get her labs drawn for the aforementioned blood tests. The first lab, at which we had an appointment, told us after we had waited of course, that they couldn't do that test. We hightailed it down to medical city, and yes, I had to talk myself down just in order to park at that place.... and got her labs drawn there. She had two diarrheas while we were at the lab. That made three up to that point, and scattered through out the day where about four more. Needless to say, they are concerned about dehydration and c diff. for this baby. We won't know about the c diff. test for a week also. At the lab they determined that Ilse is too small to do all the tests they wanted, so we have to go back again on Friday to draw for the rest of the tests. One of the tests they did draw for measures how well the white blood cells fight infection. Because, I think it is clear by this point that Ilse has a bit of trouble with infections.
The concern for the immediate future is that her bacterial infection might reassert itself since we couldn't finish the antibiotic. If she gets a high fever or screams uncontrollably, we are to call the doctor ASAP, or, if it is night, we are to go to the emergency room.
Lord willing, Ilse got enough antibiotic to do the trick. Although, if it is the button causing this problem, it will likely reassert itself and we will be in a world of trouble, unless of course, we can have a different antibiotic, although at this point I am pretty wary of too much more medicine.
The rest of our busy day yesterday was spent at UT Southwestern medical center. Tim had his much awaited appointment with a wonderful hip doctor. He was wonderful, and not just because he looked exactly like Mark Ruffalo. He did tons of x-rays, and gave a much better description of the surgery, complete with hand gestures. Tim will plan on having the surgery late May, but first he needs an MRI to confirm what is going on and to see the exact state of his cartilage.
If everything looks good, or bad, whichever way you want to phrase it, he will have the surgery. It doesn't sound as bad as the first doctor made it sound, and regardless of how long the recovery is, having the surgery in state is an automatic bonus. The first doctor said we would have to go out of state, and that sounded atrocious, as you can imagine, since I am determined not to go anywhere without my kids.
The boys are doing really well. They learned about colloquialisms, paramedics, aerodynamics, and oh my goodness, earlier Chris said something so brilliant I wish I could remember what it was.
I finally got Ilse's nose suction machine figured out and in use. Hopefully it will help her. It is too bad that there is no way to decorate it like a squirrel or something. It isn't too cute.
Mom came over yesterday at the drop of a hat and stayed all day long to watch my boys. They mostly behaved. Now my laundry is all folded, my kitchen is clean, and my floors are vacuumed. Thanks, Mom!
I have lots more to write about. However, this post is so long that I had better give your eyes and my fingers a break.
Today, though, if you have a minute, pray for my friend Amber Bowers who is having her third baby today. This is her second daughter, and could also be her second child with SLOS. One baby with SLOS is hard enough depending on how severely the child is affected. Two would be significantly more difficult, and yet, the Lord really does give us the ability to accomplish all that he asks of us. And He has given the Bowers family so much joy. They are truly a wonderful example to me. Each child is a blessing, no matter the way God makes it.
As I have said before, I don't know what I would do with a 'normal' baby-- I have gotten so used to Ilse.
I have another post to write soon, but now, I am going to call in the precious boys who just went out to play, and we are all going to lay down for a nap. It is practically a given though that Ilse will wake up the second I lay myself down.
Better hurry!
Monday, December 5, 2011
Seven months of Ilse-ness
Written December 4, 2011Today was our sweet Ilse's seven month birthday. She has grown and changed so much in these short months... And even though I say short, I still feel like I have always known her. I adore every little thing about her. I wonder at how she moves her legs when she is going to sleep... like she is a gymnast or something. She bends her hips and kicks both legs straight out in front of her, so that she is a ninety degree angle. I love seeing how she flexes her fingers out straight in an unconscious gesture that says, 'I am sleeping; please don't disturb me!' She used to hold her hand out in front of her like a stop sign when she was doing this, but now she just straightens out her hand wherever it is in her nice sleeping position.
She has come from looking like my little brown Eskimo baby
to my perfectly pink lovely girl.
She has gone from sleeping constantly
to regarding the world with joy and interest.
She has gone from eating 10 mls a few times a day to eating more than five ounces six times a day, with some more thrown in during the night for good measure.
She used to lay like a bump on a log, with both arms dangling on either side of her. Now she almost always holds her hands like she is praying, which is such a nice developmental step.
She loves her brother Joey. He always takes time to play with her, and she smiles whenever she sees him.
I remember the day she started smiling at her toys.
And I remember when she was this tiny.....
Now she is quite long!
When she came home from the hospital at a month old she had no strength whatsoever. We had to prop her up in her little bouncy seat, and she still flopped everywhere.
Now she nearly fills her bouncy seat and her swing, and she could wiggle all the way out of each if I didn't catch her.
She used to sleep in our room, and I remember struggling to find the safest way to have her sleep. I was so afraid she would throw up and choke to death in the night if I positioned her wrong. A few times Tim jolted awake to save her from choking. I was so tired I hadn't heard a thing.
When she could turn her head really well and had ceased staying asleep with us in the room, we moved her to her own room that we all worked so hard to decorate.
It took forever to unload the bags we brought home from the hospital.
But we were so happy to have all three of our babies finally together that we didn't care about the disaster.
Thinking back to the day of Ilse's birth and the month following hurts, but I must be starting to heal because I noticed that I voluntarily brought it up this week to Tim. I think that I am healing, and then I remember something else and nearly cry, so I start thinking about more recent events as fast as I can.
Today at nap time Ilse was talking and squirming so happily before she fell asleep.
She is a joy and truly is my "Darlin' Darlin'" as I sing to her every night.
And every night I tell her the gospel and remind her that even if she can never understand it, our God is merciful.
Because He is.
"Lord, You are good and do good. Righteous are You, O Lord, and upright are Your judgments. You have commanded Your testimonies in righteousness and exceeding faithfulness. Let my soul live, that it may praise You." Select verses from Psalm 119.
Tuesday, October 4, 2011
Mic-KEY button update
I loathe it. Yes, it allowed us to bring Ilse home, for which I will be ever grateful, but
It
Leaks!
It leaks now if Ilse is on her side in addition to just leaking if she is on her tummy! And you all know that I simply can't keep her still to eat.... No, this is a moving baby and she wants to thrash, kick, roll, etc.. (Her latest favorite thing is to kick her mattress and hear the loud noise it makes. Cute. :)
I have been fighting with this issue pretty much ever since she had this surgery. We have gotten so much conflicting advice from the gastrointestinal doctor and from the surgeon. Tighter, looser, more water, less water. Does she have granulomas? Well yes, but
It
Leaks
Even
When
She
Doesn't!
We finally got an appointment after I got fed up with this issue this morning. I feel like I have been more than forbearing dealing with this for four months. Ilse wants to MOVE and I am not going to force her to stay still while she eats.
Unfortunately, I really don't know what the surgeon can do. I don't know what the options are, but I am ready to insist that this get figured out once and for all.
So Ilse will see the surgeon tomorrow and I am going to hope hope hope that there is an easy solution, although, if there were, surely someone (!) would have fixed it for us by now.
So yes, I am a tad bit annoyed with this. I want my baby to be happy anwd confortable and not have her precious skin rotted by milk constantly sitting on it. How annoying would it be to have wet skin and clothes and gauze all the time?
Pray for me. For patience. And for a nap, which gets taken away from me every day because of this leaking issue. And for my semi-night's sleep, which also is seriously disturbed because of this issue.
It
Leaks!
It leaks now if Ilse is on her side in addition to just leaking if she is on her tummy! And you all know that I simply can't keep her still to eat.... No, this is a moving baby and she wants to thrash, kick, roll, etc.. (Her latest favorite thing is to kick her mattress and hear the loud noise it makes. Cute. :)
I have been fighting with this issue pretty much ever since she had this surgery. We have gotten so much conflicting advice from the gastrointestinal doctor and from the surgeon. Tighter, looser, more water, less water. Does she have granulomas? Well yes, but
It
Leaks
Even
When
She
Doesn't!
We finally got an appointment after I got fed up with this issue this morning. I feel like I have been more than forbearing dealing with this for four months. Ilse wants to MOVE and I am not going to force her to stay still while she eats.
Unfortunately, I really don't know what the surgeon can do. I don't know what the options are, but I am ready to insist that this get figured out once and for all.
So Ilse will see the surgeon tomorrow and I am going to hope hope hope that there is an easy solution, although, if there were, surely someone (!) would have fixed it for us by now.
So yes, I am a tad bit annoyed with this. I want my baby to be happy anwd confortable and not have her precious skin rotted by milk constantly sitting on it. How annoying would it be to have wet skin and clothes and gauze all the time?
Pray for me. For patience. And for a nap, which gets taken away from me every day because of this leaking issue. And for my semi-night's sleep, which also is seriously disturbed because of this issue.
Saturday, September 17, 2011
We are still here
God's mercy has definitely been displayed to us this last week or so. Today was the hardest day Tim and I have had in a long time. After a week with about two to three hours of sleep a night, I in particular really needed a good night's sleep last night. It did not happen. Ise cried basically all night long. She has been running a fever since getting her shots on Thursday, and on top of that she is teething-- whether it is early or not, she has decided that she wants teeth.
So after little to no sleep last night, today was slated to be difficult, and it was. I finally started to feel human around six tonight and was able to start getting some things done. We went and got Ilse a new back pack for her milk, and I ran in to walmart to pick up a few things I'd forgotten the other day when dee and I went shopping.
We came home And let the boys play a bit and I gave ilse her bath. She hadn't had a bath in a few days, since we hadn't even gotten the groceries out of the car. I know, those things don't seem to go together, but they do since I had purchased some new soap and lotion for her to try to combat her eczema problem before it gets debilitating. We had been so tired that we hadn't been able to even unload the car. It's done now, thankfully! And Ilse is all clean again.
Even though these days are sometimes very difficult, Tim and I are so thankful for each little blessing God has given us, from the littlest baby Ilse to our great big boys. Today I was especially thankful for my sweet sister dee who came over to this ugly heap of a house and helped me clean my room up. That was a huge help today and yesterday when we had an unexpected visitor. There was no room for poor ya-ya and sarah on the couch, but my room was clean enough to visit in. Lol.
I need to be easier on myself and remember a couple things:
1. Ilse is still little and there many extra things involved with her care (and the boys' care, for that matter) that other people don't deal with with their kids, and so we aren't going to be or look the same. What another mother of three might be able to get done when her baby is four months might be another couple months away for us.
2. It has only been the last two months that I have been trying to get my life back on track. That's not very long, and I need to give myself a break. The month Ilse was in the nicu was unbelievable difficult, and the month after that was a month of recovery. We still aren't recovered, exactly... I cried the other day talking to Ivy about it. That experience left too many emotional scars to count. I am thankful the Lord knows and loves us through it. He is not up in heaven shaking a stick at me if my bathroom floor is hairy (post pregnancy hair loss, you know.... Wait, who am I kidding? All of us women are plagued with hair on a our floors.) and He is patient with me when I can't do things perfectly like getting to church on time all the time or remember to pay bills. Yes, I've forgotten a few here and there.
The Lord is unbelievably gracious. I have probably said this on my blog before, but I have had to make myself the rule that I can't sign up for anything that I can't get out of. Things happen and Ilse doesn't sleep, and I have things to do, et. cetera. And the Lord is gracious. That deserves saying more than once.
But sitting here with my sweet babies asleep in their room, and my littlest sweet baby asleep in her crib, I am undeniably happy, even though Ilse is doing the little "I'm still crying in my heart" breathing sound in her sleep. Ilse breaks my heart when she screams and cries through her baths because she doesn't feel well or is tired, and I break my heart when I yell at Christopher for going so darn slow and have to ask his forgiveness... praying together for God to forgive mommy and make her heart clean again.
But God it still gracious, and He shows His love to us in so many wonderful ways, not the least of which is the sweet forgiveness of my sons when I wrong them.
Oh the depths of the riches, the wisdom of God,
How immeasurable is His grace,
How unfailing His kindness, how far removed His wrath,
And His mercies are new each day.
For from Him and through Him and to Him are all things,
To Him be glory forevermore, to Him be glory forever!
Amen! Amen! Amen.
So after little to no sleep last night, today was slated to be difficult, and it was. I finally started to feel human around six tonight and was able to start getting some things done. We went and got Ilse a new back pack for her milk, and I ran in to walmart to pick up a few things I'd forgotten the other day when dee and I went shopping.
We came home And let the boys play a bit and I gave ilse her bath. She hadn't had a bath in a few days, since we hadn't even gotten the groceries out of the car. I know, those things don't seem to go together, but they do since I had purchased some new soap and lotion for her to try to combat her eczema problem before it gets debilitating. We had been so tired that we hadn't been able to even unload the car. It's done now, thankfully! And Ilse is all clean again.
Even though these days are sometimes very difficult, Tim and I are so thankful for each little blessing God has given us, from the littlest baby Ilse to our great big boys. Today I was especially thankful for my sweet sister dee who came over to this ugly heap of a house and helped me clean my room up. That was a huge help today and yesterday when we had an unexpected visitor. There was no room for poor ya-ya and sarah on the couch, but my room was clean enough to visit in. Lol.
I need to be easier on myself and remember a couple things:
1. Ilse is still little and there many extra things involved with her care (and the boys' care, for that matter) that other people don't deal with with their kids, and so we aren't going to be or look the same. What another mother of three might be able to get done when her baby is four months might be another couple months away for us.
2. It has only been the last two months that I have been trying to get my life back on track. That's not very long, and I need to give myself a break. The month Ilse was in the nicu was unbelievable difficult, and the month after that was a month of recovery. We still aren't recovered, exactly... I cried the other day talking to Ivy about it. That experience left too many emotional scars to count. I am thankful the Lord knows and loves us through it. He is not up in heaven shaking a stick at me if my bathroom floor is hairy (post pregnancy hair loss, you know.... Wait, who am I kidding? All of us women are plagued with hair on a our floors.) and He is patient with me when I can't do things perfectly like getting to church on time all the time or remember to pay bills. Yes, I've forgotten a few here and there.
The Lord is unbelievably gracious. I have probably said this on my blog before, but I have had to make myself the rule that I can't sign up for anything that I can't get out of. Things happen and Ilse doesn't sleep, and I have things to do, et. cetera. And the Lord is gracious. That deserves saying more than once.
But sitting here with my sweet babies asleep in their room, and my littlest sweet baby asleep in her crib, I am undeniably happy, even though Ilse is doing the little "I'm still crying in my heart" breathing sound in her sleep. Ilse breaks my heart when she screams and cries through her baths because she doesn't feel well or is tired, and I break my heart when I yell at Christopher for going so darn slow and have to ask his forgiveness... praying together for God to forgive mommy and make her heart clean again.
But God it still gracious, and He shows His love to us in so many wonderful ways, not the least of which is the sweet forgiveness of my sons when I wrong them.
Oh the depths of the riches, the wisdom of God,
How immeasurable is His grace,
How unfailing His kindness, how far removed His wrath,
And His mercies are new each day.
For from Him and through Him and to Him are all things,
To Him be glory forevermore, to Him be glory forever!
Amen! Amen! Amen.
Thursday, August 4, 2011
Three Months
Today was the three month birthday of our precious baby girl Ilse. She brings so much joy to us, and that's why we named her Ilse Joy.
She snuggles so close to me when I hold her, and I can always make her comfy, make her stop crying, and I always know what's wrong with her. It definitely took some learning, but now I feel like I know her. I know her expressions, I know her wants, I know every single detail of what she likes. I know that when she is upset, she likes to be still and not be bounced. She is like me. :) I know when she is going to cry at the first, tiniest little hint. I know when she is hungry and when she just needs her Mommy.
I missed the first whole month of Ilse's life. It was filled with tears, sadness, hurting, loneliness, and questions. I heard many times that something was my fault, or, 'don't hold her like that!' Or, 'don't pick her up,' or 'don't disturb her,' or 'you can't spend the night here,' or 'she's just going to be hurting and scream.'
We missed so much and hurt so much; it will never be forgotten and I don't know that the scars will ever go away. I didn't get to give Ilse her first bath. I had to send my three week old baby into surgery, and I didn't know if she'd come out since she was so tiny. I nearly ripped her g-tube out because some doctor made me cry to the point of not seeing it there since he refused to take my concern about her cataracts seriously. I went to change her diaper one day and her little butt hole was bleeding and the nurses weren't doing anything about it. Another day her butt was yellow-- yellow, because the nurses didn't wipe her properly and her poop stained her. No matter how much I wiped the color wouldn't change back. Turning around and leaving her at that NICU so many times was unbearable. I pushed my recovery just so I could be with her. I drove five days after surgery and had no more pain by six days. I needed to see her. I can't imagine how she felt laying there in the NICU with the person she'd spend the last 7 1/2 months with gone. I'm so thankful that she mostly slept. Many times I'd be up at the hospital past 11 at night, just because I couldn't make myself leave. I'd cry on the way to the hospital sometimes, feeling incredible guilt, because I had taken till 10am to get back up there. I bought her so many blankets because that was all I could give her. She barfed so much that she used upwards of six blankets a day, a good day. I was washing giant loads of her blankets every other day, and I couldn't bear not to take them up to her. At first the hospital wrapped her in a horribly faded brown and pink blanket, and they didn't understand why I didn't want her to use it. It wasn't soft enough or cute enough for someone loved as much as my Ilse. I hatched a plan to lose that blanket since it kept showing up at her bed; finally I brought it home to wash it and I never took it back. Someday I'll burn it. :) I know I bought so much stuff for her room to make it up to her that she was in an ugly NICU for a month, and for having medical problems. I made her a tree so that her room wouldn't be ugly.
Most parents have lots of stuff to say to their babies. All I had for the longest time was "Ilse, you're ok! I'm not going to let anything happen to you." Empty words. Now I just remind her that she's mommy's baby. Mommy's baby Ilse. Mommy's peach. Mommy's peachy baby Ilse. :)
Some doctors told me that Ilse was so incredibly behind developmentally. Some nurses ruined the birth day for my family. I left a phone charger up at the Allen hospital, and three months later I still can't make myself go back up to that hospital to get it.
Even though the experience of Ilse's first month was horrible and so far, unforgettable, my Ilse is perfect. She is exactly the way God made her, and she is mine. (Ours, but really mine, since I have the milk, you know.) I know she is God's but he gave her to me and I am going to cherish her, teach her, and I'm determined not to miss another minute of her precious life. She is God's gift to me, and she is daily proof of his love.
I'm so thankful that now she is home where she belongs.
She snuggles so close to me when I hold her, and I can always make her comfy, make her stop crying, and I always know what's wrong with her. It definitely took some learning, but now I feel like I know her. I know her expressions, I know her wants, I know every single detail of what she likes. I know that when she is upset, she likes to be still and not be bounced. She is like me. :) I know when she is going to cry at the first, tiniest little hint. I know when she is hungry and when she just needs her Mommy.
I missed the first whole month of Ilse's life. It was filled with tears, sadness, hurting, loneliness, and questions. I heard many times that something was my fault, or, 'don't hold her like that!' Or, 'don't pick her up,' or 'don't disturb her,' or 'you can't spend the night here,' or 'she's just going to be hurting and scream.'
We missed so much and hurt so much; it will never be forgotten and I don't know that the scars will ever go away. I didn't get to give Ilse her first bath. I had to send my three week old baby into surgery, and I didn't know if she'd come out since she was so tiny. I nearly ripped her g-tube out because some doctor made me cry to the point of not seeing it there since he refused to take my concern about her cataracts seriously. I went to change her diaper one day and her little butt hole was bleeding and the nurses weren't doing anything about it. Another day her butt was yellow-- yellow, because the nurses didn't wipe her properly and her poop stained her. No matter how much I wiped the color wouldn't change back. Turning around and leaving her at that NICU so many times was unbearable. I pushed my recovery just so I could be with her. I drove five days after surgery and had no more pain by six days. I needed to see her. I can't imagine how she felt laying there in the NICU with the person she'd spend the last 7 1/2 months with gone. I'm so thankful that she mostly slept. Many times I'd be up at the hospital past 11 at night, just because I couldn't make myself leave. I'd cry on the way to the hospital sometimes, feeling incredible guilt, because I had taken till 10am to get back up there. I bought her so many blankets because that was all I could give her. She barfed so much that she used upwards of six blankets a day, a good day. I was washing giant loads of her blankets every other day, and I couldn't bear not to take them up to her. At first the hospital wrapped her in a horribly faded brown and pink blanket, and they didn't understand why I didn't want her to use it. It wasn't soft enough or cute enough for someone loved as much as my Ilse. I hatched a plan to lose that blanket since it kept showing up at her bed; finally I brought it home to wash it and I never took it back. Someday I'll burn it. :) I know I bought so much stuff for her room to make it up to her that she was in an ugly NICU for a month, and for having medical problems. I made her a tree so that her room wouldn't be ugly.
Most parents have lots of stuff to say to their babies. All I had for the longest time was "Ilse, you're ok! I'm not going to let anything happen to you." Empty words. Now I just remind her that she's mommy's baby. Mommy's baby Ilse. Mommy's peach. Mommy's peachy baby Ilse. :)
Some doctors told me that Ilse was so incredibly behind developmentally. Some nurses ruined the birth day for my family. I left a phone charger up at the Allen hospital, and three months later I still can't make myself go back up to that hospital to get it.
Even though the experience of Ilse's first month was horrible and so far, unforgettable, my Ilse is perfect. She is exactly the way God made her, and she is mine. (Ours, but really mine, since I have the milk, you know.) I know she is God's but he gave her to me and I am going to cherish her, teach her, and I'm determined not to miss another minute of her precious life. She is God's gift to me, and she is daily proof of his love.
I'm so thankful that now she is home where she belongs.
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