Saturday, April 9, 2016

Progress, Setbacks, and Heartache

Sorry to have not updated this week. It's been busy and trying. One of the families that I've grown close to had to say goodbye to their precious baby yesterday. Sweet E fought so hard. Her battles are those of legends, and she overcame so very much in her short time. Her parents are some of the kindest most wonderful people you'll ever meet. Little E and Avelyn have a lot in common. Both are victims of circumstance. Both struggled against infections, blood clots and dialysis. They could've grown to be sweet friends, now Avelyn must carry the torch for them both. I hate it.
I hate that the world has lost such a precious soul. CHD steals lives before they've even begun. It's not fair; that precious baby deserved a beautiful life with her spectacular parents. It's not right. No baby should have to endure the horrors our kids have gone through. Yet here we are and here we'll stay, because that's reality. 
Sweet E and little Avelyn are 2 of the 40,000 kids born annually, in this country alone, who must fight for their lives from the first breath. It's a cold and broken reality, but CHD can strike any family at any time. Please raise awareness and share the tragedy of this disease. We need more funding for the treatment and care of these little warriors. CHD research is vastly underfunded given the frequency and severity of disease.
Avelyn Update-
Avelyn started off the week in a bad way. 
Her PD got clogged and then drained all around the site. It's a long story but essentially this caused her to retain potassium and to become ulcerated around the PD site and her arterial line. She also become extremely delirious and ended up not sleeping for nearly 36 hours. During this time she was dealing with pain from her belly not draining, ulcerative wound sites and also extreme constipation.
 Her blood pressures stayed elevated and her chest tube output has been trending back up ever since. She cried much of that 36 hours. It was so heart wrenching. Her PRN dilaudid was changed to fentanyl and that seemed to help her pain and restlessness. As the week wore on she grew more edematous and her belly hardened. Wednesday she got a new PD site which allowed dialysis and feeds to be restarted. 
Since then she has lost a lot of the extra fluid and she's starting to look like herself again. She still has a long way to go but she is slowly getting some fluid off. 
She still hasn't peed but I have tried to not agonize over it. I believe she'll get there with time. I have to believe that, the alternative is too unbearable to consider.  
She is tolerating small weans on ventilator settings for now. Hopefully we can get all the extra fluid restricting chest expansion off in the next week to get her better optimized for extubation. Please pray the chest tube output starts the trend back down and of course, as usual, for pee pee.
Love to you all. 


  1. Praying hard for you and your baby Somer. I know must be scared on an hourly basis as would I.It kills me to read what you are going through. Call me if you need an ear. I'll be there for you.

  2. You are holding up so well considering what you have gone through, and to say that I'm proud of you is an understatement. I'm in awe. Our sweet Avie is looking so much better but last night when she cried, it just tore at my heart. I dont know how you can witness that day in and out. That precious little face with tears and not being able to hear her because of the ventilator...just excruciating. Her little belly must be so very sore with old wounds yet to heal, and now new drains -no spot untouched. The constipation alone had to be wicked, but seeing her cry Now with loose stools only tells me how very sore her little tummy must be. She literally fell asleep within a minute after she pooped. This little one continues to go thru hell and she just keeps going. And there you are right by her side. You are a wonderful Mother and I love you with every cell of my being. You and Sean have my undying love, respect, and support in any way I can give it. Thank you for my precious Avie who has brought me so much more joy than I could ever have imagined. I pray that God gives you all strength to endure and progress to a point that she's able to join you both at home where you all long to be 🙏❤️

  3. I know you don't know me and I'm not sure if Sean remembers me. However I have been following all the ups and downs with your little angel. I just wanted you to know that you are one hell of a strong women!!! I don't think I would be able to stay as strong as you have throughout these months. I pray every day that all of the pain that you guys are going through will finally be over and you get to take her home. She is such a strong willed little angel. My family will continue to pray for yours.