Good moments the last week

Thank you for all your prayers & kind words. We will be bringing Avalynn to the hospice in-patient care facility this morning. Basically being admitted to the hospital, but she will have 24hr nursing, her neonatalogist will be rounding on her, she will have a private room, with a bed & ensuite private restroom & shower, etc so we can stay with her over night. They are going to start fresh to manage her symptoms since things have been changing so rapidly & especially since morphine has been increased so much so fast this past week. Hoping for clarity about what is causing her different episodes of desating & tachycardia & tachypnia & strider & how best to manage them.

Today, holding her, and a few of my favorite pictures from Sat

last night Avalynn took a nose dive and its very possible we will lose her in the next few days. We almost lost her between 3 & 4:30am, till she decided to work a little more at staying with us... She can't keep her oxygen saturation up, she isn't able to tolerate enough food so she's starving and has lost 3 lbs thus far, she can't maintain her body temperature, she has obvious signs of brain damage due to oxygen deprivation, and she's either very pale or purple. I haven't slept in 30 hours for the second time this week, because I'm caring for her. Nursing was approved and starts at ten in the evening so I should be able to sleep then, depending on if Avalynn is maintaining or declining further.

Well things have been changing with Avalynn. Her secretions have gotten worse. I believe she's hurting now, and luckily the morphine can help that now too. She is having Brady's, not just apnea episodes. Which means her heart stops as well as her Breathing for a matter of seconds. She isn't tolerating her food to the point that she is losing too much weight...She's slowly starving. We are working towards getting her a vest that will vibrate her thorax, breaking up secretions in her lungs, hopefully letting her expel them. But she may be too small for it. We are experimenting with her food, trying to feed her more in a day by doing twelve hours of continuous feeding at a lower rate over night. And her normal feeding during the day, every few hours. We are trying to resolve and compromise her need for oxygen, a medication for her heart and lungs, with her need to eat. The oxygen puts pressure and air into her tummy and makes her aspirate her food. It's a battle finding the balance. We are going to try fortifying her food too, adding calories to her food without increasing the dose.

Please pray with us these changes are beneficial without other issues.

And as always thanks for your support. It's easier knowing we are not alone.

Update from Jennifer last night

"Poor thing, Avalynn has thrush and pneumonia on top of everything else. I can say at least thrush is a normal baby thing.

We had a good day though, even while she cried through about half of it. We visited papa at work to say goodbye to a retiring coworker who has helped the family in many ways. It was fun seeing my dad get to hold her and show her off.

We also got a visit from our friend Nancy, she brought the most beautiful quilt for Avalynn. Her first hand made one from beginning to end, with special significance in the colors and design.

We have been so blessed to have such incredible friends. We are humbled and grateful beyond words for your love and support and your individual ways of showing it"