Today is a hard day and see how fast it happened after just posting about small stuff and sweat. My world is feeling very small and wallowing is the natural posture that I tend to turn. Trying to work through my thoughts is probably a good idea because let's face it, feelings can just be manipulative liars.
So yesterday ended up being a terrible, horrible, rotten, cruddy, miserable fail after fail after fail. The feeding pump got disconnected early, early in the morning and fed the bed instead of the baby. I left behind important paperwork that I have to turn in for foster care at our first appointment of the morning which is a long drive, I squeezed in to the doctor to get jellybean's ear checked and have her listen to his congestion just to be sure we weren't getting worse then I was hit with the fact that our EEG appointment was supposed to be at that time and we missed it. I had worked so hard to get that appointment and I fouled it up.
Finally, we get home and about 30 minutes later, jellybean's g-tube is lying on the floor because it came out somehow, some way I do not know. That was a panicked drive to the ER to spend 7 hours getting it put back in and getting an x-ray to make sure it is in place and did not damage anything going back in.
Fail. Fail. Fail. It is a loaded bat that I proceeded to beat myself with as soon as I jumped out of bed after 3 hours of sleep to get jellybean ready for his therapy visit this morning (which he did an amazing job with considering all things).
I want so bad to keep this little guy out of the hospital and the emergency room and yet, it happens time after time after time. Caseworkers are quizzing me on why he has to go back so much or informing me that they have never had a child get so bad.
Yes, please add some more weight to the bat and help me aim it at my head.
"Please, LORD, please. Just let there be a time that this is going to let up and there will be one small piece of normal," I beg. (I hate the word "normal" by the way so you can see my desperation)
The reality is that time might not come and maybe I will not be the person they keep little jellybean with but Jesus is God and getting that right trumps all my faults, flaws, foibles, and failures. There I can rest my faith and trust that His will cannot be thwarted not even a smidge by my failing or wallowing. And, the best part is that it's not about me any way. So ha!
Now can I make my mind listen and not go back to sweating everything? I don't know but I could be in the running for "best wallower." Let's see if it is possible to wallow and read Psalm 96 over and over and while I'm at it, I could probably check in on some dear friends who are going through serious trials and could use encouragement and prayer. Sounds like a much better plan.
Wednesday, March 25, 2015
Monday, March 23, 2015
Drowning Small Stuff in Sweat
Yep, I used a cliché with a twist and I could throw in "It takes a village..." but I won't. Not in its entirety. This past week has wracked my nerves and it is really my own fault. I let it. Little jellybean wheezed and sounded congested and Bam! The anxiety level in my body shot up off the charts.
The oxygen did have to be turned up but then it got turned back down but then back up again and then down. Yesterday, I really, really, really just wanted to go to church but I was afraid. Fear of getting the little guy out and going back to the hospital was freezing me up. Then it hit me, "If he is already getting sick, there is nothing you can do. Go to church."
Thankfulness that I did overwhelmed even the biggest feeling of being disconnected and an alien because it had been so long that I had been there. It was a beautiful message from 1 Thessalonians. A message that my heart, mind, and spirit needed. But what to do about that awful worry?
Everyday the oxygen concentrator sighs like an exasperated mother and the pulse oximeter beeps sporadically like some wild jazz tune with no real beat while the feeding pump whines quietly in between it all and the worry about going back to the hospital was louder than all of it. I heeded its call to diligently use the "magic" inhaler and trust that it would keep the hospital away. And if that didn't work, use the other inhaler, too, plus the nose drops. Yes, the nose drops! They would surely work. Then my own theories - maybe he needs to work with less oxygen as much as possible so that his lungs "learn" to work better or maybe he needs more oxygen so his body can rest and heal.
So sad. See how easily I fall off the track?
Maybe the only thing I needed to do was stopping trying to control it so I did. I came home from church and threw out the worry. Yes, I am giving jellybean his meds as prescribed and no, I haven't quit keeping tabs on his oxygen. The difference is I stopped believing (for the moment any way) that any of those things are the answer. So my sweat level has changed and the only small stuff I am paying attention to is the blessings I can count.
God must have wanted me to test out my faith because it was a hard night of crazy oxygen dips and coughing and crying (not me this time). Before midnight the little guy was back up to his half liter of oxygen that we had weaned down from over a week ago. This time I prayed and trusted that God knew what He was doing even if we went back to the hospital.
This morning was a new day. Jellybean awoke with his "goo" babble and when I peeked at him, he squirmed with excitement and the biggest smile. Strangely, his oxygen has been able to be turned down to less than a quarter liter and he is the happiest of campers right now.
Hmmm, I wonder what caused him to change so quickly? Not one single thing in my power, this much I know.
I will say to the LORD, “My refuge and my fortress,my God, in whom I trust.” - Psalm 91:2
You can't trust a preemie, especially a 24-weeker, but you can always trust in the LORD.
The oxygen did have to be turned up but then it got turned back down but then back up again and then down. Yesterday, I really, really, really just wanted to go to church but I was afraid. Fear of getting the little guy out and going back to the hospital was freezing me up. Then it hit me, "If he is already getting sick, there is nothing you can do. Go to church."
Thankfulness that I did overwhelmed even the biggest feeling of being disconnected and an alien because it had been so long that I had been there. It was a beautiful message from 1 Thessalonians. A message that my heart, mind, and spirit needed. But what to do about that awful worry?
Everyday the oxygen concentrator sighs like an exasperated mother and the pulse oximeter beeps sporadically like some wild jazz tune with no real beat while the feeding pump whines quietly in between it all and the worry about going back to the hospital was louder than all of it. I heeded its call to diligently use the "magic" inhaler and trust that it would keep the hospital away. And if that didn't work, use the other inhaler, too, plus the nose drops. Yes, the nose drops! They would surely work. Then my own theories - maybe he needs to work with less oxygen as much as possible so that his lungs "learn" to work better or maybe he needs more oxygen so his body can rest and heal.
So sad. See how easily I fall off the track?
Maybe the only thing I needed to do was stopping trying to control it so I did. I came home from church and threw out the worry. Yes, I am giving jellybean his meds as prescribed and no, I haven't quit keeping tabs on his oxygen. The difference is I stopped believing (for the moment any way) that any of those things are the answer. So my sweat level has changed and the only small stuff I am paying attention to is the blessings I can count.
God must have wanted me to test out my faith because it was a hard night of crazy oxygen dips and coughing and crying (not me this time). Before midnight the little guy was back up to his half liter of oxygen that we had weaned down from over a week ago. This time I prayed and trusted that God knew what He was doing even if we went back to the hospital.
This morning was a new day. Jellybean awoke with his "goo" babble and when I peeked at him, he squirmed with excitement and the biggest smile. Strangely, his oxygen has been able to be turned down to less than a quarter liter and he is the happiest of campers right now.
Hmmm, I wonder what caused him to change so quickly? Not one single thing in my power, this much I know.
I will say to the LORD, “My refuge and my fortress,my God, in whom I trust.” - Psalm 91:2
You can't trust a preemie, especially a 24-weeker, but you can always trust in the LORD.
Saturday, March 14, 2015
Home, Home Yet Again
Home! Can I say it again? HOME! In one day shy of a week, we were discharged and I am amazed. The words to explain how unbelievable it is are beyond me. This time was so very traumatic. It was a night of terrible weather as ice was building up on everything and we had just finished prepping ourselves in case we lost power. We were settling in for a quiet night and just finished a snuggle session with the jellybean when we laid him in his swing. Ten minutes later, I am trying to convince the 911 dispatcher that I am in the county that I said I was and that the important detail was the baby we were holding who was in respiratory failure.
Respiratory failure. I see those words in his discharge notes and my heart aches. He was so small, his lips were purple. The slow ride in the ambulance through the ice was surreal. I remember talking and apologizing for things but mostly feeling anxious that we were not moving faster and that the paramedic was not doing much. The ER staff was much more attentive and I remember saying more words, more information, anything that I thought would help speed things up. I heard "respiratory failure." I heard him cry in my lap and I squeezed him tighter. Left lung bad. CO2 extremely high. Cyanotic. Tachypneic. Apneic. Words, words all around about the small baby in my arms. The room was full of words and people.
It does not seem real. Three and half days later in the ICU and this small baby was laughing and playing and I was praising God. Unreal, miraculous. We had some frustrations in it but looking back, they pale in comparison. Every morning we get a smile as bright as the sun and giggles that are just as warm. My mind is just now starting to process the whole event.
Coming home, I was anxious and I laid in bed, praying for faith to trust God and just to sleep and KNOW He was in control. It took me longer than jellybean's ICU stay to get myself on track but here I am. I am home and it is not just a place where I physically live, it is a spiritual place where my faith rests in God no matter what happens.
Respiratory failure. I see those words in his discharge notes and my heart aches. He was so small, his lips were purple. The slow ride in the ambulance through the ice was surreal. I remember talking and apologizing for things but mostly feeling anxious that we were not moving faster and that the paramedic was not doing much. The ER staff was much more attentive and I remember saying more words, more information, anything that I thought would help speed things up. I heard "respiratory failure." I heard him cry in my lap and I squeezed him tighter. Left lung bad. CO2 extremely high. Cyanotic. Tachypneic. Apneic. Words, words all around about the small baby in my arms. The room was full of words and people.
It does not seem real. Three and half days later in the ICU and this small baby was laughing and playing and I was praising God. Unreal, miraculous. We had some frustrations in it but looking back, they pale in comparison. Every morning we get a smile as bright as the sun and giggles that are just as warm. My mind is just now starting to process the whole event.
Coming home, I was anxious and I laid in bed, praying for faith to trust God and just to sleep and KNOW He was in control. It took me longer than jellybean's ICU stay to get myself on track but here I am. I am home and it is not just a place where I physically live, it is a spiritual place where my faith rests in God no matter what happens.
Sunday, March 8, 2015
Viable or Not Viable? That is not a Question for Us
Shocked and astounded, followed by a hard stare of utter confusion. That was my reaction to an incident that occurred during our latest hospital stay, which is still in progress. One evening as the nurse finished changing little jellybean's bed, it became evident that his IV site needed attention so the nurse went to get another nurse to help. The new nurse asked about his status as a preemie and when informed that he was a 24-weeker, she was surprised that he looked so good (chunky). She proceeded in conversing with the other nurse as if I was not there about jellybean's health concerns and felt comfortable to let this slide out of her mouth: "I am just not sure that I would consider a baby born at 24 weeks viable."
What??? Enter shock and astonishment.
Obviously, this ex-24 week preemie is living and growing, so who are we to judge if a life is viable? I was upset and as I pondered on it that night, I realized something.
We all do it, maybe not out loud but in our hearts and minds. We do it when we judge others by our own prejudices and self-righteousness. We do it when we speak evil by gossiping. We do it when we refuse to forgive. We also do it when we neglect to share Christ. Yet Christ so freely laid His life down for all.
While sitting in this hospital room, I have done the thing that caused me to shudder. I have judged lives. This awkward moment has not been lost though because, for the moment, I am on high alert to catch myself and praying that the Spirit will do a greater work so that the only righteous judge of life's viability is glorified.
What??? Enter shock and astonishment.
Obviously, this ex-24 week preemie is living and growing, so who are we to judge if a life is viable? I was upset and as I pondered on it that night, I realized something.
We all do it, maybe not out loud but in our hearts and minds. We do it when we judge others by our own prejudices and self-righteousness. We do it when we speak evil by gossiping. We do it when we refuse to forgive. We also do it when we neglect to share Christ. Yet Christ so freely laid His life down for all.
While sitting in this hospital room, I have done the thing that caused me to shudder. I have judged lives. This awkward moment has not been lost though because, for the moment, I am on high alert to catch myself and praying that the Spirit will do a greater work so that the only righteous judge of life's viability is glorified.
 |
| I AM viable |
Sunday, March 1, 2015
Homebound Confessions
Scars are the end of healing for a wound. Scars tell a story. They are symbols that some deep trauma occurred but did not last and although it did end, there is forever a mark.
Jesus had scars. His were symbols of the cost of restoring people to God. His scars were proof that our debt was paid. In our lives, we have spiritual scars. It is impossible for one to be pulled from sin and it not leave a mark, a symbol that we are changed forever.
Many times I overlook the tools God uses to get us right and bless us. It is the struggle and suffering that causes us to draw closer to God, depend on Him, rely on Him. It is the scar that gives a reminder from where we came and what God has done.
Oh, why do I buck so hard against the struggles?
On the cusp of our recent hospital stay, I was breaking. It had been a loooooooong 11days. My life was not my own and I do not mean that it was because I had surrendered it to Christ. I mean that I felt like it was hijacked. Days came where I would be confined to the room because I could not leave my sweet little one alone with his birth family and one of them decided to make the hospital stay a social gathering. Cracking up was probably a better term for what was happening to me. Anger and bitterness gnawed at my exhausted mind but this was no news to God. He knew and He cared but He also was using every moment.
My sweet friend listened to my text rant then kindly sent me this:
"For the moment all discipline seems painful rather than pleasant, but later it yields the peaceful fruit of righteousness to those who have been trained by it." - Hebrew 12:11
Yes, discipline. Yes, growth but why the battle. Because I am the one who needs to bend and submit. It is my will that is to be eradicated so that seeking His will becomes my only goal. Unfortunately, I hold very tightly to my will and my desires. Shamefully, I have to admit that it takes a lot to move me, to cause me to bend, to make me realize I must submit. This time it took 11 days of a very emotional roller coaster ride to drive me to the one place that I know I need to go - my LORD. Baby isn't breathing properly. Stop trying to be the answer and pray. His family isn't acting right. Stop trying to make them see their inconsiderate ways and pray and speak Truth to them.
After being released with oxygen, an inhaler, one more specialist to add to the list, and enough paperwork to recreate War and Peace, you would think the fresh scar would remind me of what I need to do and where I should turn and yet here I am, bucking just as hard.
We are home. The one place I yearned to be when I was measuring my days out by nursing staff changes. But, I am weary spiritually. Thoughts run around my head that are evil and I find myself wanting to run from church and church people. A few friends are the exception and they will call me out on these feelings and have done so faithfully when I fess up.
The other day I told my dear sweet sister in Christ that I felt disconnected and that people were staying away from me because they are thinking that I chose to foster and therefore I asked for all this difficulty. She set me straight very quickly. Of course, it did not take long for the next onslaught to invade my mind as I set about the day in the normal routine of suctioning, venting, and filling pump feed bags.
When I question God about the why, I get to back up in Hebrews 12 and read:
"Consider him who endured from sinners such hostility against himself, so that you may not grow weary or fainthearted. In your struggle against sin you have not yet resisted to the point of shedding your blood. And have you forgotten the exhortation that addresses you as sons?
“My son, do not regard lightly the discipline of the Lord, nor be weary when reproved by him. For the Lord disciplines the one he loves, and chastises every son whom he receives.”
It is for discipline that you have to endure. God is treating you as sons. For what son is there whom his father does not discipline?
If you are left without discipline, in which all have participated, then you are illegitimate children and not sons." - Hebrews 12:3-8
So, why do I end up being so dreadful in these situations? Because I am not there yet. I am not perfect, I am not holy, I am not sanctified. And no matter, what the nurses or hospital staff say about me and what I do, I am not good. What should be an opportunity to glorify God turns into a festival of rebellion and whining...even if no one sees it but those who are getting my texts, even if they don't see it. There is a discipline that is needed and I know it.
For every day that I am here in my house with this sweet little baby with no one else, it is an opportunity to glorify God and train myself up in righteousness so that when I get out, I am not continually reverting back to the same old things and forgetting to honor my Savior whose wounds did bleed because I was separated from God but have been restored.
Make me faithful God even if it leaves a lot of scars.
Jesus had scars. His were symbols of the cost of restoring people to God. His scars were proof that our debt was paid. In our lives, we have spiritual scars. It is impossible for one to be pulled from sin and it not leave a mark, a symbol that we are changed forever.
Many times I overlook the tools God uses to get us right and bless us. It is the struggle and suffering that causes us to draw closer to God, depend on Him, rely on Him. It is the scar that gives a reminder from where we came and what God has done.
Oh, why do I buck so hard against the struggles?
On the cusp of our recent hospital stay, I was breaking. It had been a loooooooong 11days. My life was not my own and I do not mean that it was because I had surrendered it to Christ. I mean that I felt like it was hijacked. Days came where I would be confined to the room because I could not leave my sweet little one alone with his birth family and one of them decided to make the hospital stay a social gathering. Cracking up was probably a better term for what was happening to me. Anger and bitterness gnawed at my exhausted mind but this was no news to God. He knew and He cared but He also was using every moment.
My sweet friend listened to my text rant then kindly sent me this:
"For the moment all discipline seems painful rather than pleasant, but later it yields the peaceful fruit of righteousness to those who have been trained by it." - Hebrew 12:11
Yes, discipline. Yes, growth but why the battle. Because I am the one who needs to bend and submit. It is my will that is to be eradicated so that seeking His will becomes my only goal. Unfortunately, I hold very tightly to my will and my desires. Shamefully, I have to admit that it takes a lot to move me, to cause me to bend, to make me realize I must submit. This time it took 11 days of a very emotional roller coaster ride to drive me to the one place that I know I need to go - my LORD. Baby isn't breathing properly. Stop trying to be the answer and pray. His family isn't acting right. Stop trying to make them see their inconsiderate ways and pray and speak Truth to them.
After being released with oxygen, an inhaler, one more specialist to add to the list, and enough paperwork to recreate War and Peace, you would think the fresh scar would remind me of what I need to do and where I should turn and yet here I am, bucking just as hard.
 |
| God still does miracles |
We are home. The one place I yearned to be when I was measuring my days out by nursing staff changes. But, I am weary spiritually. Thoughts run around my head that are evil and I find myself wanting to run from church and church people. A few friends are the exception and they will call me out on these feelings and have done so faithfully when I fess up.
The other day I told my dear sweet sister in Christ that I felt disconnected and that people were staying away from me because they are thinking that I chose to foster and therefore I asked for all this difficulty. She set me straight very quickly. Of course, it did not take long for the next onslaught to invade my mind as I set about the day in the normal routine of suctioning, venting, and filling pump feed bags.
When I question God about the why, I get to back up in Hebrews 12 and read:
"Consider him who endured from sinners such hostility against himself, so that you may not grow weary or fainthearted. In your struggle against sin you have not yet resisted to the point of shedding your blood. And have you forgotten the exhortation that addresses you as sons?
“My son, do not regard lightly the discipline of the Lord, nor be weary when reproved by him. For the Lord disciplines the one he loves, and chastises every son whom he receives.”
It is for discipline that you have to endure. God is treating you as sons. For what son is there whom his father does not discipline?
If you are left without discipline, in which all have participated, then you are illegitimate children and not sons." - Hebrews 12:3-8
So, why do I end up being so dreadful in these situations? Because I am not there yet. I am not perfect, I am not holy, I am not sanctified. And no matter, what the nurses or hospital staff say about me and what I do, I am not good. What should be an opportunity to glorify God turns into a festival of rebellion and whining...even if no one sees it but those who are getting my texts, even if they don't see it. There is a discipline that is needed and I know it.
For every day that I am here in my house with this sweet little baby with no one else, it is an opportunity to glorify God and train myself up in righteousness so that when I get out, I am not continually reverting back to the same old things and forgetting to honor my Savior whose wounds did bleed because I was separated from God but have been restored.
Make me faithful God even if it leaves a lot of scars.
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