Yesterday (8/24) was a much better day. Lauren spent most of the time sleeping, and making up for the loss of sleep in the previous two days. The volume of her milk from the feeding tube was increased and fortified, which significantly reduced her need to ask for food by mouth. A speech therapist visited in the morning to bottle feed her and observe her sick/swallow/breathe cycle and assess for risk of aspiration. Lauren was doing a great job, bit has a very strong suckle, causing her to drink very fast. We were cleared to continue to breastfeed after pumping and bottle feed in small amounts if Lauren showed that she was hungry. Later in the day, we gave Lauren one meal from the bottle to see how she would do. She sucked down over an ounce and a half in less than 5 minutes without spitting up. A few minutes later she had an episode exactly like what she has been doing at home, which was why we had taken her to the ER last Friday. The nurse happened to be in the room to witness this. While we didnt like to see Lauren in pain again, it was really good for them to FINALLY observe what we had been trying to convey all along. Laurens oxygen sats dipped into the 40% range and her heart rate jumped up into the 200s. It took her a few minutes to recover. Needless to say, full meal bottle feeds were taken out of the equation for now. The, in the evening, shortly after I breastfed her, she had another episode, and this time the whole tream came in to get her stats back up and observe as well. They cranked up her oxygen flow and got her stable again. Although, I was still allowed to breastfeed after this, Ibwas very hesitant, because we still do not know if the direct oral feeds are the culprit or if there is something associated with digestion, and the timing of the feeds are coincidental. I did feed her one more time to sooth her to sleep, but limited the amount and time that she fed. No more episodes throughout the night, thank goodness. Lauren was bright eyed and bushy tailed during the late evening hours, which was tiresome for us, but it was nice to see her being her normal self for a little while! Now We sit here anxiously waiting for a visit from the cardiac team. Today they will be collaborating to decide the next course of action. My gut feeling is that she will be having some sort of heart procedure soon. Regardless of her mystery digestive episodes, there is a very obvious trend of declining oxygen saturations, and her current stats are only good due to the high flow cannula. I not going to lie about the fact that I am sooo not mentally/emotionally ready for my baby to have an invasive surgical procedure, but I also know that they have to do SOMTHING, because there is no way that we could go home safely considering the oxygen and feeding support she needs right now. Meanwhile, we are just going to continue to keep her happy and oxygenated. Stay tuned!
Posted on: Mon, 25 Aug 2014 12:34:43 +0000
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