This morning brings some optimism as Lauren has been able to sleep for longer chunks of time. She went an entire 90 minutes this morning, only waking in tears one time after coughing up some of the junk in her lungs. There is a little concern about damage to her airway and vocal cords due to the repeat intubation/extubation of the CPAP, which has caused her to breathe with lots of grunting/gurgling and she has yet to get much vocal sound back. We believe that this is one of several sources of her discomfort. The other issue is that she appears to have the worlds worst reflux, which hasnt improved with her current medication. I spoke with one of the doctors who has followed her closely since surgery, and has developed a plan to try to resolve her reflux and feeding issues. A GI surgeon will be coming in to evaluate her to determine if her abdominal pain is due to her malrotation or something else. If it is not malrotation, then a more aggressive approach to deal with the reflux will take place. They also want to try some veeeeery slow feeds through the tube again, because she is building up a lot of air and acid in her empty stomach. We are crossing our fingers that she will begin to tolerate breastmilk again, as to avoid needing to experiment with formula, which could be a longer and more frustrating process. It is pretty much guaranteed that, regardless of what she will eat, she will be sent home with a feeding tube for at least 4 weeks until her throat heals. When all bases are covered in terms of milk tolerance, reflux and malroation, if she still does not make improvements, then abdominal surgery will be considered. We really really want to avoid an additional surgery if at all possible. The most important thing, however is that her lungs are slowly becoming more clear, and her heart function is good. It is so awesome to see her oxygen saturations remain stable and her heart rate stay below the 200 when she is in distress. Sooooo awesome! The doc said that if she didnt have such difficult throat and abdominal issues, from a heart-healthy standpoint, we would be ready for discharge. Unfortunately, we are likely to bee here for several more days. They obviously will not send us home until Lauren can eat well enough to gain weight. Please pray for us to find the best feeding solution for Lauren.
Posted on: Thu, 04 Sep 2014 13:57:17 +0000
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