Avelyn is in such a dangerous place. Her chylothorax and renal function have not improved at all. Her infectious markers have been trending up for three days. She was tolerating being weaned off the ventilator well over the weekend but now isn't. They are having to go back up on settings. With all the new complications it is feared something else may be inhibiting her progress. Blood, trach and urine cultures have been obtained and she is scheduled to have an abdominal ultrasound and echocadiogram tomorrow.
Her chest tube and PD are still putting out about a liter a day. It hasn't showed any signs of slowing or stopping. Her urine output is scant. The nephrologist came by today and admitted that while she could regain renal function if things turned around very soon, each day makes the possibility less likely.
We have yet to hear back from CHOP, but I fear they won't be able to do anymore than what is already being done. We should hear back in a week or so.
The unit's centrifuge is still broken so Avelyn still isn't getting skimmed breastmilk. She's getting a special formula instead and I don't know if she is tolerating it. I was at first told that I couldn't manually skim my breastmilk for her, and then days later told I could. So I went through the whole process twice of skimming it (the milk has to sit for 12-24 hours before each skim) but it still had some fat in it. The nurses saw it and tossed it all. I couldn't help crying. Right afterward, the doctor came in asked me where it was and said it could be sent down for testing to see if it was alright to give her. I didn't trust myself to tell her it had just been thrown out, I was already on the verge of a breakdown.
That milk was to be my only contribution to my baby's health. Skimming it was literally all I could do for my baby. And then it's thrown in the trash. It'll take two days to skim more. Two days of Avelyn going without the potential benefits. The centrifuge is supposed to be working again by Friday. I pray it is. I know breastmilk won't cure her, I am not stupid. But I also know it's better nutrition than she is currently getting. She is so malnourished due to her chest tube losses. TPN and lipids have fattened her checks but her limbs are emaciated. Her belly is so distended from fluid and liver enlargement.
Oh, she's just so very terribly ill and yet,
she's fighting so hard.
So here we are again, facing the potential loss of our sweet baby girl. We are so scared and are at a complete loss. I know I should feel blessed to have spent the last three months by her side, and I do. But I want so much more time. We need so much more time. Sean and I want to see her smile again. We want to hear her voice. We want to see her grow and laugh. The thought of not getting to is unbearable.
Thank you to all who have given to us, supported us, prayed for us and encouraged us through this terribly difficult time. I hate to continue to ask but please keep Avelyn in your thoughts and prayers. Please pray the drainage slows and then stops. Please pray no further complications arise and her little kidneys recover. Pray God blesses us beyond measure and heals our baby girl. At this point we're waiting on a miracle.