Sometimes I feel defeated.
The past few days have been flooded with a heaviness I can't seem to shake.
The heaviness in my heart is from a combination of thoughts. Thoughts of the future, wondering if my milk production will start to increase, wondering if the doctors are right about Will, or if we should hold on to the hope that he'll progress. But the thought at the forefront is the deep regret that one of the people I'm closest with doesn't want contact with me anymore. The reasons are still unclear, but it is clear that my heart is breaking.
A scripture has been rolling around in my mind. It's in Matthew Ch 11.
29 Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls.
30 For my yoke is easy, and my burden is light.
How do I give my burdens to the Savior? How do I let it all go? How can I raise my flag and surrender? For some reason, I keep holding on to these worries. I still have faith that someday these worries will be swept away in His love.
But right now I desperately need rest for my soul.
Monday, June 30, 2014
Sunday, June 22, 2014
Tolerating feeds
Surrendering to the Savior is a daily choice.
I sit here watching Will struggle as he gags and retches, then attempts to catch his breath. An alarm goes off and the nurse runs in, gives him a few puffs of oxygen, then exits the room. My heart breaks and I feel so very helpless.
His fundoplication and G tube surgery was 3 days ago. And now he isn't tolerating his feeds. His tummy isn't used to getting food. He's always been fed past his stomach, in the jejunum. The doctors don't really seem to know how to proceed. And neither do I.
During the shift change, I listen in as the nurse reviews his history. My heart starts to race as she goes down the list.
Microcephaly
Bilateral Congenital Hip Displasia (both hips are out of socket and need surgery)
Neurological impairment
Cerebral Palsy
GERD
Cast on left food to correct malformation
Recent Fundoplication surgery
G tube
1/4 liter oxygen
problems swallowing
I start to tear up and wonder how much more one little baby can take.
But then I look at him and he looks at me. I'm so blessed to be his momma. As hard as this is, I am grateful to be able to walk this sacred path with him, where angels are continually surrounding him.
I want him to come home. But first he needs to tolerate food in his tummy.
I know that if we all pray for this, it will happen.
I know it.
I sit here watching Will struggle as he gags and retches, then attempts to catch his breath. An alarm goes off and the nurse runs in, gives him a few puffs of oxygen, then exits the room. My heart breaks and I feel so very helpless.
His fundoplication and G tube surgery was 3 days ago. And now he isn't tolerating his feeds. His tummy isn't used to getting food. He's always been fed past his stomach, in the jejunum. The doctors don't really seem to know how to proceed. And neither do I.
During the shift change, I listen in as the nurse reviews his history. My heart starts to race as she goes down the list.
Microcephaly
Bilateral Congenital Hip Displasia (both hips are out of socket and need surgery)
Neurological impairment
Cerebral Palsy
GERD
Cast on left food to correct malformation
Recent Fundoplication surgery
G tube
1/4 liter oxygen
problems swallowing
I start to tear up and wonder how much more one little baby can take.
But then I look at him and he looks at me. I'm so blessed to be his momma. As hard as this is, I am grateful to be able to walk this sacred path with him, where angels are continually surrounding him.
I want him to come home. But first he needs to tolerate food in his tummy.
I know that if we all pray for this, it will happen.
I know it.
Monday, June 16, 2014
Checklists
I realize I'm going to be late and scramble to find my shoes. After loading Will and his equipment in the car, I do a mental checklist.
Oxygen tank and tubing, check.
Feeding pump and extra bag, check.
Wipes, diapers, bum cream, suctioning, extra milk... check.
Monitor, check.
Gauze, Q-tips, meds and syringes, check.
Extra outfits, extra blanket (blow-out is inevitable), check.
Sanitizer, binky wipes, binky, check.
Ok, I think I'm ready. Oh wait, I forgot his G tube extension.
I dash back into the house, seal the tube in a baggie, and head to Mary Bridge Health Center.
Today I have appointment with Will's GI and pulmonary doctors. I'm anxious to see what they both have to say.
Will has been having troubles with a lot of bile in his tummy, resulting in a lot of green goo flowing from his mouth and nose, resulting in troubles with breathing, resulting in lots of coaxing to get his fragile lungs to cooperate. Not to mention the pain that all of this causes him. Bile in the throat is NOT comfortable.
It is so difficult for me to watch him struggle. But I know these experiences will make me stronger and more compassionate. I have to keep reminding myself of this each day.
Oxygen tank and tubing, check.
Feeding pump and extra bag, check.
Wipes, diapers, bum cream, suctioning, extra milk... check.
Monitor, check.
Gauze, Q-tips, meds and syringes, check.
Extra outfits, extra blanket (blow-out is inevitable), check.
Sanitizer, binky wipes, binky, check.
Ok, I think I'm ready. Oh wait, I forgot his G tube extension.
I dash back into the house, seal the tube in a baggie, and head to Mary Bridge Health Center.
Today I have appointment with Will's GI and pulmonary doctors. I'm anxious to see what they both have to say.
Will has been having troubles with a lot of bile in his tummy, resulting in a lot of green goo flowing from his mouth and nose, resulting in troubles with breathing, resulting in lots of coaxing to get his fragile lungs to cooperate. Not to mention the pain that all of this causes him. Bile in the throat is NOT comfortable.
It is so difficult for me to watch him struggle. But I know these experiences will make me stronger and more compassionate. I have to keep reminding myself of this each day.
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