Sunday, February 21, 2016

The Rollercoaster that is Our Lives

The last week has been a ride of ups and downs. Last night Sean said, "I don't think I'll ever have to ride a Rollercoaster again.." I couldn't help but agree. After all of this, I don't think much will phase us once we get our baby girl home. This week ran the gambit of terror, darkness, optimism, and hope. Right now we are siding with optimism and hope but are still taking each hour cautiously. 
Avelyn is doing much better. She's off ecmo which is an enormous blessing. She is still bleeding quite a bit but it seems to be slowly but surely improving. She still has an gaping open chest cavity and is on high ventilator settings. Her oxygen need is much higher than it has ever been but supposedly that's typical of kids just off ecmo. Her just body just needs to readjust to doing it all on her own again. Her lungs are still recovering from the trauma of her surgery, being on ecmo, and being so over loaded with fluid. Through the night she had to have multiple fluid bolus' to keep her blood pressure within range. Again supposedly that's normal as their little bodies adjust to the major change of the ecmo machine being removed. 
And like I mentioned above, her chest cavity is still open under a thin transparent dressing. It's unnerving to watch her her heart beat but I couldn't be more over joyed to either. She is alive and still fighting, what could be better than that?Hopefully as she gets more stable in the next couple days she can get a lot of fluid off and her chest can be closed. 
Her white blood cell count was elevated this morning. Yet, she's already on such high doses of antibiotics and an antifungal that I think it's just the stress of all that happened yesterday. The doctors haven't rounded yet, we'll see if they feel differently. She had a subdural bleed in her occipital area while on ecmo. That's why there was a mad dash to get her off of it yesterday. After a CT scan we learned it is quite small but at first we didn't know that. With the amount of heparin (anti-blood clotting medicine) needed to run the machine, there was a risk for it getting worse and causing brain/neurological damage. She'll be monitored everyday for a while to ensure it doesn't grow and eventually reabsorbs. She also had a belly x-ray a couple days ago that looked suspicious. NEC was a concern, yet again, but they hope to have ruled it out. 
So that's where we stand now. Like I said she is doing so much better but still has so far to go. We couldn't be more proud of our baby girl's determination to live. We're taking it all day by day, but she continues to be a miraculous little wonder. Our prayers have not gone unanswered. Please keep them coming. Love to all. 


  1. You all have and will continue to be in my thoughts and prayers. Avie is so precious and such a little fighter.

  2. You all have and will continue to be in my thoughts and prayers. Avie is so precious and such a little fighter.

  3. Still feeling so thankful and emotional after this weekend. Those highs and lows leave you feeling so completely worn out. Just forever grateful for Avies improvement. God is so Good ❤️🙏

  4. Father, I ask you to give your healing power to Avie. I also ask that you give Somer, Avie, Sean and their family the strength through these times. Bless them, Lord. In Jesus name I pray..amen