Riley came home from the hospital Sunday morning and we are so glad to have her home. Her pneumonia has cleared and while in the hospital she had a feeding tube placed in her small intestine. The hope is that with food going directly into her small intestine (or Jejunum) she will not be at risk for vomiting - but the down side is she is always connected to her feeding pump because she has to eat 24 hours a day so that the food is delivered at a rate her jejunum can handle. We are working towards slowly increasing the amount of food per hour so that she is able to have her feed delivered over 16 hours a day but that will take some time. The only other option was a very invasive procedure to wrap her stomach in order to prevent reflux or vomiting so we are hoping that this tube into her jejunum (or j-tube) will remedy the problem. While this procedure was much less complicated than wrapping her stomach it ended up being a very painful procedure for her and the tube is not permanent. The doctors said that the j-tube will last about 4 months and then will need to be redone. Our prayer is that she will gain weight & grow stronger so that when the time comes for the j-tube to be replaced she will simply not need it anymore.
Also, Josh and I really just want to say thank you to all of our amazing friends, family, and church family at Celebration - we are completely overwhelmed by the outpouring of love and support from all of you. It is so humbling to have the honor of doing life along side such amazing men and women. We have maxed out our insurance and our (very expensive) nursing agency is unable to provide us with nurses any longer . . . it is 3:00 in the morning and I am on the second half of the night shift to care for Riley (Josh stayed up with her till 2). We are exhausted and have no idea how we are going to afford everything but oddly enough, we are completely OK with that. In Matthew 10:9 as Jesus sent out His disciples he said, "Do not take along any gold or silver or copper in your belts; take no bag for the journey, or extra tunic, or sandals or a staff" He said this so that they would be completely reliant on God and would only be able to boast on His provision alone for their food and shelter from day to day. We wake with excitement and anticipation each morning to see how God is going to provide for us that day - whether it be advice from someone who knows the system, finding a qualified nurse to work for us that night so we can sleep, or a good report from one of Riley's doctors. It is by no means an easy way to live each day without much sleep or much of a plan for the future but it is easy for us to put our hope in a loving God who hasn't failed us yet. 2 Corinthians 2:9 - "But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me."
Love,
Becca
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2 comments:
We don't know you personally but I read your blog & pray for Riley often. Our son had a disorder that was able to be repaired with surgery & over a month in the NICU. The surgery you mentioned was one they thought our Noah would need; but thankfully he didn't. I will pray that the j-tube works! We know exactly what those are! Give Riley a hug from some of her prayer partners.
In Him,
Sarah
Just wanted to say Todd and I are thinking of ya'll and praying for ya'll. Our prayer is that God will provide your every need and pour out His grace and favor on your family everyday. WE LOVE YOU GUYS!
PS- We know the previous poster (Jonathan and Sarah) and you can know they really are praying for you! :) (hi, sarah!)
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