Monday, April 18, 2016

Rooted in the Woods

Avelyn has been having another rough week. She has seen gains in some areas but serious set backs in others. 
Her chest tube output has plataued at a lower rate~ 200ml a day. This is great considering how much she was putting out just a week and a half ago. This means she's holding on to more nutrition and electrolytes. It also means she's not having to get as many replacements to help her maintain a baseline. However 200ml's is still a lot of output and she has a long way to go.
Her dialysis has been working pretty well. She has been able to get some of the extra fluid off that was making it difficult for her to expand her chest. She still has some edema left to resolve but she'll get there. The nephrologist came in Friday and said her kidneys are likely permanently and significantly damaged. She insinuated that they were no longer expecting her to make urine. The news broke my heart. Then later that same night Avelyn peed for the first time in weeks. It was only 8 ml but she peed. I was more proud than Inhave ever been in my life. I took the diaper around the unit and we all celebrated her 8 mls. Nurses were coming into her room left and right to congratulate her-it was a huge deal. 
Since then she has averaged about a small diaper a shift. I have been really encouraged by her urine output but then today we may have hit another snag. Her peritoneal drain was leaking into her diaper, which likely throws off her "urine" counts. She had the site redressed and secured today so hopefully this won't continue to be an issue. However it makes me wonder just how much of the fluid we have been celebrating was actually urine. Only time will tell. Keep the pee pee prayers and dances coming.
This week's bad news is Avie's has been having a lot of trouble with ventilation recently. She has been having a ton of gas that gets her heart rate up near 200min and her blood/right atrial pressures up. In these episodes she breathes really fast and shallow causing her to get acidotic, which just makes everything worse. 
Thursday and Friday nights she had some pretty scary episodes. Thursday night she got a large mucus plug that completely blocked her right airway. She had no air movement in her right lung. Her sat's dropped for a few minutes; her heart rate and blood pressure also started to drop before they could bag it loose and suction her out. Her ventilation hasn't been the same since. She's needed to go back up on all of her vent settings. We were gearing up for extubation in the coming week but now that's completely off the table. Currently the team doesn't know what's going on. She was started back on nitric oxide to see if she was having issues with pulmonary hypertension. It hasn't seemed to help. Her pulmonary hypertension is due to small pulmonary arteries, which will only improve with growth (we hope) and cardiac caths, so I didn't figure it would anyway.
Also over the last week her cardiac margins have been expanding on her x-rays. We don't know the cause so far. She had an echo to look into cardiac function due to the increasing size but it didn't show any strongly significant findings. The expanding cardiac borders is a really terrifying new development. It could be something very serious or it could also be that her right lung is partially collapsed in the same area of her right atria-making her heart border look larger. The doc says this partial lung collapse would be best case scenario. She'll have a bronchoscopy tomorrow, thisnentails putting a camera into her lungs to investigate her airway. If they find any stubborn mucus they'll levage her. 
If they can't find the source of the problem she'll have an MRI later in the week. Normally in these circumstances a kid would have a CT scan but given her poor kidney function she wouldn't tolerate the dye. The bad thing about having the MRI is she'll have to have her pacing wires pulled before going down. This makes me nervous. Her pacing wires are inserted directly into her atria and ventricles and have saved her life or at least saved her from needing CPR in the past. No longer having them there as a fail safe worries me. 
I feel like just when we start to see significant progress and a possible light at the end of the tunnel our girl gets knocked back. I've been thinking a lot about how Avelyn will never be alright. Many CHD kids won't be. They will always struggle with their disease.
Even in the best cases, they may grow and thrive, but worry free vistas of health are not on the horizon. Instead we will always face forests of challenges. Avelyn will always need to be monitored closely by a cardiologist, and now likely a nephrologist as well. She'll always be more susceptible to illness. She'll have developmental delays and will lag behind her peers as they run and play. 
That's best case scenario. Worst case scenario, she'll never leave this hospital alive. That's a real possibility but I believe with all my heart that if any baby can over come these specific circumstances it's my Avelyn. She's tough and she's fighting with all her might. I believe she has a lot to offer this world and can grow to be someone remarkable. She is already such an amazing little person and she's never left her bed. 
So despite all her challenges and setbacks, I am not giving up on her. In the last few months we've pitched a tent in our proverbial woods but I think it may be time to build a cabin. Sean and I are in this for the long haul, because Avelyn is in it for the long haul. I'm alright with never getting out of the woods. There's a beauty to the Forrest that a wide open vista could never touch. When you live among the trees, you learn to see the beauty of the easily overlooked. The waterfalls and wet diapers. The liveliness of new life and the lasting impressions of those we've lost. The peaceful stillness and precious slow blinks. The rustle of leaves and the wiggle of toes. We might've missed or taken for granted a lot of these "little" but beautiful things if we were looking upon a vast vista.

We cherish our girl and will always be there for her, however and wherever she needs us.


  1. Oh how beautifully you write about your strong little Avie! We ache for/with you and we are full of pride with you as you see her fight on. I love to see your dreams for her future. What an inspiration you all are! "I believe she has a lot to offer this world and can grow to be someone remarkable. She is already such an amazing little person and she's never left her bed." We are praying with you to this end. -- Kathy Stahlman Hildebrand, Georgia

  2. Beautifully said. I keep you all in my thoughts and prayers. Hang in there.

  3. Father, thank you for the strength you have given Avie and her family. We still need your healing touch for Avie, and continued strength for her family. Please give the medical staff the knowledge to provide the medical care she needs. In Jesus name I pray, Amen.

  4. Father I love this child more than I have words to express -I ask you for Love and Mercy for our sweet Avie. I ask for healing Lord. I ask for wisdom for her medical team and comfort, peace & guidance for her parents. Lord please speak words of strength & courage to our sweet baby as she's sleeps, and send your Angels to watch over her. I thank you Father for this precious gift and give you the honor & glory for her ultimate healing...amen

  5. Praying for and Dancing for Pee Pee <3

  6. Loving Father, we lift Avie up to You and pray that You would look down in compassion and grace on this precious tiny lamb and pour out Your healing mercies on this sick little baby.

    Your grace is all-encompassing and You are full of mercy and loving-kindness and so we pray that You would speedily grant this little one health and strength.

    Father, we know her parents feel so helpless having to watch their little baby suffer in this unpleasant way, but You said let the little children come to Me – and therefor we ask for Your healing power to flood through every part of Avie’s little body so that she will be restored to full health and strength. We ask this in Jesus’ holy name,

    Cynthia Collins