Saturday, March 26, 2016

100 Days

Avelyn hasn't had a good week. She hasn't gotten any better. If anything she's gotten worse. Her chest tube output is still around a liter a day. Her urine output and function has also gotten a little worse. By Wednesday I couldn't handle to the sit and wait approach any longer; I told the team I wanted a second opinion. I had researched chylothorax and thoracic effusions quite a bit and found that Children's Hopsital of Philadelphia is the leading treatment and research facility in the world. That's what I gathered anyway. We sent Avelyn's treatment records on Thursday and hope to hear back soon. 
In the mean time I guess we are still waiting but that doesn't mean things have slowed. Avelyn is still being weaned from her sedative medications and is having a hard time of it. Her heart rate and blood pressure have been high and she's restless. The team started her feeds back on top of the withdrawals. The centrifuge that was skimming the fat out of her breastmilk is broken so she got straight formula. It's a special low fat formula due to her chylothorax. She had it before her most recent surgeries as a fortifier with skimmed breastmilk, and tolerated the combination well. However yesterday when the hourly rate of formula was increased, she started to get uncomfortable and having extremely watery stools.  The diarrhea could be withdrawal related or a signal of her not tolerating the formula for whatever reason. I asked them to test her stool for blood last night just in case. Of course, it was positive. She's on heparin again and I am hoping she just isn't tolerating the formula in general. I pray it's not a purfusion issue or NEC. Her X-ray showed a possible pneumotosis so we're headed down the NEC rule out road again.
Her chest tube site looks awful. It's been in for two months now, and has been draining an average of 30-50ml an hour. Sometimes it leaks around the insertion site and dampens the dressing, which has caused the site become ulcerated. It looks so painful but there nothing to really do about it.They can't pull it because she'll suffocate if the fluid isn't drained from her chest. They just have to change the dressing a couple times a day and try to keep the site dry. It's so frustrating. It just something else paining her that supposedly nothing can be done about.
Her breathing has seemed more labored over the last couple days too. Again, I hope its withdrawal related. My gut tells me it's not but we'll just have to see. Either way she won't be coming off the ventilator any time soon. 
We had great experienced nurse yesterday. She thought Avelyn was stable enough to let us hold her. It's been two months since she was last held. It took four nurses to get her into my arms. I cried for the first couple hours and Sean was emotional too. It was a nice change. She has changed so much since she was last in my arms. She is so much heavier and longer. Her eyes hold more expression.
Living in this environment, it's difficult to feel like parents. We never get to hold our baby. We don't get to change her diapers. We've never loaded her up in the car and taken her anywhere. She's never seen outside of the hospital. She's never felt the wind on her face or seen the brightness of the sun. She knows nothing but her Hopsital crib and room. 
And it's been so long..... 
Yesterday I saw that her length of stay was 99, and given we've been here since she was born that means she was 99 days old. 
Today marks 100. 
100 days.
100 days of our sweet baby fighting for life. 100 days of looking at her through or over rails. 100 days of tubes, lines, beeps, blinking lights, doctors, surgeries, scars, drips, pain, and struggle. 100 days of uncertainty. 100 days of longing. 100 days of tears and questioning 'why'. 100 days of avoiding other young families because we just can't handle it. 100 days of staring into those deep blue eyes and apologizing for the pain and discomfort.
100 days with our sweet precious Avelyn. I so wish her life was full of kisses, smiles, bottles and baby chatter. I miss the few precious weeks I got to hear her sweet little voice. It's been so long. We've been here so long. I don't know how long she can keep going in this state. She is so fragile. It's terrifying. Everyday I worry about what new complication will find its way to her. There's always something to hold her back and keep is here longer. 

I am still so hopeful that the day will come when she will be free of her cords, tubes and monitors. When she will breathe easy not not require pain medicine. When people will remark on her rosiness of her cheeks and not the pale blue of her lips. We'll get there one day. I hope it doesn't take another 100 but we'll get there. 

1 comment:

  1. This Beautiful little one has brought me more tears than I can count. Tears of joy at her limitless ability to surpass the unfavorable odds. And tears of fear & anger as she under goes procedure after procedure. She has filled my soul with hope & joy. She lives tubeless in my dreams. I wake up knowing that these are dreams but also visions of what life can & will be like when she's better. I play her videos over & over so I can hear her sweet little voice and see her moving like she should be. Her DAY is coming and oh what a day of rejoicing it will be. May not be within these 100 days but it's coming...Our Father is just working on His Masterpiece -and her name is Avelyn ❤️🙏😊