They changed Chloe's 1cc feedings to every 4 hours this afternoon. At 6pm they found some milk remaining in her stomach but at 10pm there was only mucus and no remaining milk. It's still too early to know if there's a blockage in her intestines.
This waiting is making me crazy! On the one hand I want them to take it easy on her and not push her little body to hard but on the other hand I'm super anxious to know the outcome. Hey, did you know that you don't have to be on your knees with your hands clasped on your bed to pray? How is it that I'm 34 years old and just learned that I can pray anywhere any time? I can pray while doing dishes, while driving the car, while in the shower, you name it! Pretty cool...
Wednesday, September 30, 2009
Tuesday, September 29, 2009
Day 37 - Working on it
Chloe is receiving 1cc of milk every six hours and before giving her each feeding they are checking her belly to pull out any milk remaining from the last feeding. Fortunately, there hasn't been any milk left in her stomach so far. This is good but we're not yet at a point to congratulate ourselves and celebrate. The doctor explained to me that this tiny amount of milk is not going to give Chloe calories or nutrition. Its purpose is to remind her stomach how to work and get it started again without overdoing it. They should increase frequency tomorrow to every three hours. Until feedings are increased we don't know if the milk will make it all the way through her intestines. We need to watch several more feedings and wait. Please keep praying hard! So far so good...
In addition, they are trying to push her lungs and get her off the oscillator (just in case she needs to be transported). Please pray that her lungs can continue to handle the new oscillator settings.
Thank you friends!
In addition, they are trying to push her lungs and get her off the oscillator (just in case she needs to be transported). Please pray that her lungs can continue to handle the new oscillator settings.
Thank you friends!
Monday, September 28, 2009
Day 36 - Trying some milk
Dave spoke with both the surgeon from Children's and the doctor today. The doctor still wanted to send Chloe over to Children's to do this "reverse ink test." Instead of sending the ink into her stomach and watching it digest, they would send it up her rear (using pressure) and see how it travels her lower intestines in reverse. If the test was unsucessful and they didn't find a blockage then they would probably try a milk feeding to see what happened. We felt like the milk feeding would be less invasive and without risk so we would rather try that first. The doctor said he'd be comfortable with that course of action and put in the order.
Chloe got 1cc of milk into her belly at 8pm tonight. Please pray with me that she digests the milk and is passes through her intestines unobstructed. This is so important!
The fact that she's gone 5 weeks without food is starting to get the doctors nervous and we're starting to feel the pressure for her digestive system to start working. If this feeding doesn't work then they'll start to get invasive again. I'll be so relieved if that's not necessary. I'm imagining God's hand smoothing her intestinal passageway open and the food digesting out of her stomach and making it's long journey through her system. Please help this happen. I know she can do it!
They'll check at 2am to see how much milk is left in her stomach.
Chloe got 1cc of milk into her belly at 8pm tonight. Please pray with me that she digests the milk and is passes through her intestines unobstructed. This is so important!
The fact that she's gone 5 weeks without food is starting to get the doctors nervous and we're starting to feel the pressure for her digestive system to start working. If this feeding doesn't work then they'll start to get invasive again. I'll be so relieved if that's not necessary. I'm imagining God's hand smoothing her intestinal passageway open and the food digesting out of her stomach and making it's long journey through her system. Please help this happen. I know she can do it!
They'll check at 2am to see how much milk is left in her stomach.
Sunday, September 27, 2009
Day 35 - 5 weeks old - Into the 30's...
Today was Chloe's 5 week birthday. Yet another week with our beautiful little blessing. We spent lots of quality time together. Me humming. Her listening. I can't be more thankful for her. Such an amazing little angel. Dave got to hold her for the first time today during her isolette change. He looked so comfortable holding her. Not a bead of sweat formed on his face - not sure how he managed that. I'm a sweaty mess every time I get to hold her! In addition to her birthday Chloe's making another milestone today. She's completing what would have been 29weeks 6days gestation. She starts week 30 tomorrow!
Overall it was a good week. She's remained fairly stable and we've enjoyed relative calmness.
There is the issue of her belly, though. The doctor called Dave today and said he wanted to transport Chloe to Dayton's Children's hospital right away and begin tests to determine why she can't pass gas through her bowel. This raised a bunch of red flags for us. Transporting Chloe is pretty risky in itself considering her condition. Not to mention the risks that come with surgery on such a small baby. Then there's the fact that we weren't comfortable with the process that brought them to this decision. She's stable now and we didn't understand the sudden urgency. It seemed as though they wanted to transport her simply to fit the surgeon's schedule and save him a trip to Miami Valley Hospital! Dave quickly became Chloe's vehement and vocal advocate. Fortunately, Dave has no problem standing up for his daughter (in a forceful way that I don't think I could have managed) and Chloe was not transported.
Dave met with the surgeon ,who made the trip to visit Chloe and, after an assessment, decided he wanted to gather more information before moving her or performing any tests or surgery. The test and surgery, by the way, sound pretty horrible to me and I really really don't want them to happen. I'm trying so hard to be trusting and faithful. I know that everything will be all right in the end and I really want to avoid self pity. So many people and their babies have dealt with so much more than this. It's really challenging, though, to have your baby go through so much. Faith. Faith. Faith. Right?
If Chloe's intestines/bowels can fix themselves tonight then she won't have to go through these tests and surgery they're talking about. How about another miracle, God? What do you say?
Overall it was a good week. She's remained fairly stable and we've enjoyed relative calmness.
There is the issue of her belly, though. The doctor called Dave today and said he wanted to transport Chloe to Dayton's Children's hospital right away and begin tests to determine why she can't pass gas through her bowel. This raised a bunch of red flags for us. Transporting Chloe is pretty risky in itself considering her condition. Not to mention the risks that come with surgery on such a small baby. Then there's the fact that we weren't comfortable with the process that brought them to this decision. She's stable now and we didn't understand the sudden urgency. It seemed as though they wanted to transport her simply to fit the surgeon's schedule and save him a trip to Miami Valley Hospital! Dave quickly became Chloe's vehement and vocal advocate. Fortunately, Dave has no problem standing up for his daughter (in a forceful way that I don't think I could have managed) and Chloe was not transported.
Dave met with the surgeon ,who made the trip to visit Chloe and, after an assessment, decided he wanted to gather more information before moving her or performing any tests or surgery. The test and surgery, by the way, sound pretty horrible to me and I really really don't want them to happen. I'm trying so hard to be trusting and faithful. I know that everything will be all right in the end and I really want to avoid self pity. So many people and their babies have dealt with so much more than this. It's really challenging, though, to have your baby go through so much. Faith. Faith. Faith. Right?
If Chloe's intestines/bowels can fix themselves tonight then she won't have to go through these tests and surgery they're talking about. How about another miracle, God? What do you say?
Saturday, September 26, 2009
Day 34 - Let's Pass Some Gas
Well, the removal of the "repogal" tube wasn't as much of a success as we'd hoped. Chloe's belly did fill up with gas this morning. We're not quite sure why she can't seem to pass it. The doctor guesses that it could just be immaturity or it could be that there is scar tissue obstructing the passage. They put off the attempted feeding and inserted a new tube into her belly to relieve the gas pressure. This one was inserted into her nose.
Please pray with me that her body will continue to heal itself. I'm feeling alternately confident/hopeful/desperate today.
Please pray with me that her body will continue to heal itself. I'm feeling alternately confident/hopeful/desperate today.
Friday, September 25, 2009
Day 33 - No More Tubes
Chloe seems to be on track to bowel/intestinal improvement. The doctor showed me her x-rays today and she looks much better. He turned the suction off her "refogal" tube but left it in for today to see how she does without suction. The "refogal" tube went down her throat and all the way into her belly and was suctioning out small amounts of fluid and air. They took it out Tuesday because nothing was coming out but then her belly filled up with air and became uncomfortably distended so they put it back in. Chloe has been producing extremely large amounts of saliva the past couple of days, though, and every time I look at her she has a huge foam beard of spit bubbles. It's cute and all but doesn't bode well for the tape holding her tube in place. She managed to pull her refogal tube out twice today so they finally decided to leave it out (rather than put her through reinsertion.) As of 10pm tonight her belly looked ok.
The two drainage tubes placed during her surgery have also managed to come out on their own, leaving a gaping hole in her side. The surgeon decided to leave it alone and try to let it close up/heal on its own. In the meantime they're keeping sterile gauze over it and carefully changing her diaper (the hole is pretty close to her diaper area) to try and keep out any bacteria.
Prayers for tonight:
-Chloe's bowel/intestines continue to improve so that they are strong enough to process feedings tomorrow.
-The nurses are vigilant in their cleansing and keep germs and bacteria away from her wound site avoiding infection.
-Comfort for Chloe as her body heals and grows.
-The rest of Chloe's body, like her lungs, continue to develop even as we're focusing on her digestive problems.
(Note: I use parentheses for medical words that I'm spelling phonetically. I have no idea how they're actually spelled and have more important things to do [like get to sleep] than research.)
On other fronts:
Solana's really enjoying Pre-K at our church. We are blessed to have found such a wonderful and nurturing place for her during this ridiculous amount of transition we're putting her through. I often look at her and think about how blessed I really am to have her.
I'm trying to figure out how to be a grown-up and homemaker again. I haven't managed the household since June and am remembering how much work it actually is when Dave, my Mom, or my sister aren't here cleaning and getting Solana ready every day. I've decided not to overdue it, though, and have committed to taking care of Solana and the dog, visiting Chloe, laundry, clean kitchen/bathroom, and unpacking one box per day. Other household chores are on an as-needed basis.
Dave seems to be getting over his cold and actually visited Chloe today after work. Then he picked up a small U-Haul and spent the rest of the evening at the old house loading up the rest of our stuff. I think all we have left is to finish cleaning and we'll finally be done with that house!
The two drainage tubes placed during her surgery have also managed to come out on their own, leaving a gaping hole in her side. The surgeon decided to leave it alone and try to let it close up/heal on its own. In the meantime they're keeping sterile gauze over it and carefully changing her diaper (the hole is pretty close to her diaper area) to try and keep out any bacteria.
Prayers for tonight:
-Chloe's bowel/intestines continue to improve so that they are strong enough to process feedings tomorrow.
-The nurses are vigilant in their cleansing and keep germs and bacteria away from her wound site avoiding infection.
-Comfort for Chloe as her body heals and grows.
-The rest of Chloe's body, like her lungs, continue to develop even as we're focusing on her digestive problems.
(Note: I use parentheses for medical words that I'm spelling phonetically. I have no idea how they're actually spelled and have more important things to do [like get to sleep] than research.)
On other fronts:
Solana's really enjoying Pre-K at our church. We are blessed to have found such a wonderful and nurturing place for her during this ridiculous amount of transition we're putting her through. I often look at her and think about how blessed I really am to have her.
I'm trying to figure out how to be a grown-up and homemaker again. I haven't managed the household since June and am remembering how much work it actually is when Dave, my Mom, or my sister aren't here cleaning and getting Solana ready every day. I've decided not to overdue it, though, and have committed to taking care of Solana and the dog, visiting Chloe, laundry, clean kitchen/bathroom, and unpacking one box per day. Other household chores are on an as-needed basis.
Dave seems to be getting over his cold and actually visited Chloe today after work. Then he picked up a small U-Haul and spent the rest of the evening at the old house loading up the rest of our stuff. I think all we have left is to finish cleaning and we'll finally be done with that house!
Thursday, September 24, 2009
Day 32 -
I got to spend about three hours with Chloe today and she's actually looking really good. We've been noticing for days that she actually looks bigger. She's just over two pounds now and it's pretty amazing that we can actually see nine ounces on her!
This morning the doctor told us that Chloe's x-ray looked better than it did last night. Her bowel is less dialated (this is good) and we're hoping this means it's healing itself. They'll check again tomorrow and if it looks better again they'll try a feeding. Yesterday was pretty nerve wracking. What a relief to hear this news. I feel like we've been given yet another chance. I'm sooo thankful!!
This morning the doctor told us that Chloe's x-ray looked better than it did last night. Her bowel is less dialated (this is good) and we're hoping this means it's healing itself. They'll check again tomorrow and if it looks better again they'll try a feeding. Yesterday was pretty nerve wracking. What a relief to hear this news. I feel like we've been given yet another chance. I'm sooo thankful!!
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