Small victories
Boy this hospital stay is very tiring. Having to hookup the tube and feed every 2 - 3 hours. In between that nurses come in for IV fluids, diaper checks, etc. So, really there is no sleep. I am SO glad that Amber went home to get some quality sleep last night. That should help her immensly.
The small victory of the day is that we have finally made it to 45 cc every three hours without throwing up. Granted the last one I left out the formula since she cried and fussed for two hours straight and gagged the whole time nearly throwing up. Now with this straight mommy she is sleeping good. Sure her stomach could tolerate the formula if we fed her every HOUR. But to sustain life, to sleep thru the night, for all of us to get rest, to function, to thrive, we simply cannot keep that schedule. So, as the more we gave her the more fussy she becomes. So, I decided to just stop it this morning. To let her sleep as well. It seems to be working for now. It went so well in fact I was able to feed her myself. Holding the tube in one hand and passy in the other. I still cannot figure why it is better to keep trying the formula after we know it bothers her. That if she takes it in a large bottle that she WILL NOT sleep until it is processed and the next feeding. No amount of bouncing, holding, rocking, will stop the formula fuss. Isn't it better to sleep soundly on mommy alone?
The small victory is that we are increasing the feedings. That we are working our way up the chain. That the throwing up has ceased. For this small victory I am thankful.
The other possibility from our current stay is a full upper GI study with dye and possibly surgery. But we are trying to fatten her up for that operation which should fix the GURD to fatten her up for the heart operation which should fatten her up for the colostomy operations which should fatten her up to live. So, in this rat race we have many more hurdles ahead and each one seems increasingly more difficult.
One last thought. Amazing people. Random acts of kindness by amazing people who only know us, but really don't know us. Our church family whom we have been like the college kid away on vacation that doesn't really check in. At any other church, we would have been abandoned a long time ago. People would have blamed us for not going to church. They would have held that against us and wanted us to just stay away. Not our church family. We went home last night for Amber to shower and guess what was there. A PERFECTLY manicured lawn. It was mowed, edged, weeded, and cleaned up. Thru all of this struggle someone just showed up, and took care of our lawn. The kicker is they didn't just grab my mower and cut it. NO. They loaded up their mower and other lawn equipment, and took care of it the right way. Those moments like that. The blind acts of kindness. Those are the moments where you confirm your faith. That if this faith produces people that do these kinds of good deeds. The kind of good deeds you read about in the Bible. The kind of good deeds you rarely receive once in a lifetime at other churches. If they do deeds like this weekly and sometimes daily. How can you deny it?
If I was to summarize, Kyleigh is stomaching better. Someone manicured our grass. And right now for the moment, I feel better.
The small victory of the day is that we have finally made it to 45 cc every three hours without throwing up. Granted the last one I left out the formula since she cried and fussed for two hours straight and gagged the whole time nearly throwing up. Now with this straight mommy she is sleeping good. Sure her stomach could tolerate the formula if we fed her every HOUR. But to sustain life, to sleep thru the night, for all of us to get rest, to function, to thrive, we simply cannot keep that schedule. So, as the more we gave her the more fussy she becomes. So, I decided to just stop it this morning. To let her sleep as well. It seems to be working for now. It went so well in fact I was able to feed her myself. Holding the tube in one hand and passy in the other. I still cannot figure why it is better to keep trying the formula after we know it bothers her. That if she takes it in a large bottle that she WILL NOT sleep until it is processed and the next feeding. No amount of bouncing, holding, rocking, will stop the formula fuss. Isn't it better to sleep soundly on mommy alone?
The small victory is that we are increasing the feedings. That we are working our way up the chain. That the throwing up has ceased. For this small victory I am thankful.
The other possibility from our current stay is a full upper GI study with dye and possibly surgery. But we are trying to fatten her up for that operation which should fix the GURD to fatten her up for the heart operation which should fatten her up for the colostomy operations which should fatten her up to live. So, in this rat race we have many more hurdles ahead and each one seems increasingly more difficult.
One last thought. Amazing people. Random acts of kindness by amazing people who only know us, but really don't know us. Our church family whom we have been like the college kid away on vacation that doesn't really check in. At any other church, we would have been abandoned a long time ago. People would have blamed us for not going to church. They would have held that against us and wanted us to just stay away. Not our church family. We went home last night for Amber to shower and guess what was there. A PERFECTLY manicured lawn. It was mowed, edged, weeded, and cleaned up. Thru all of this struggle someone just showed up, and took care of our lawn. The kicker is they didn't just grab my mower and cut it. NO. They loaded up their mower and other lawn equipment, and took care of it the right way. Those moments like that. The blind acts of kindness. Those are the moments where you confirm your faith. That if this faith produces people that do these kinds of good deeds. The kind of good deeds you read about in the Bible. The kind of good deeds you rarely receive once in a lifetime at other churches. If they do deeds like this weekly and sometimes daily. How can you deny it?
If I was to summarize, Kyleigh is stomaching better. Someone manicured our grass. And right now for the moment, I feel better.
4 Comments:
Great post Troy... you are such an amazing father and husband! Hugs to you dear!
Troy and Amber, I know you don't know me however your story has really touched my heart and you guys are in my prayers.
Stephanie
Sometimes it's just the little things in life that make it all the more precious. God bless you all - and don't be afraid to rely on that faith! I hope someday to meet you all face to face because you have no idea how much you and Amber and the babies have all touched a very special place in my heart. Hugs to you all -
I am so very proud of both of you and am so thankful for your church family. You really hit the nail on the head when you said that most churches would have written you off. It astounds me that with all the things going on in your lives, that you are having to defend your faith to others. But, you know from all the problems with Bri that being defensive of and fighting for your children becomes a way of life.
Love you all!
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