Sunday, February 28, 2016

Complications

Our sweet little Avelyn can't seem to catch a break. We have spent more than a month hoping and praying that this surgery, she only just survived, would be her ticket to better days. So far it just hasn't worked out that way. Yea sure, it's early. We're not yet two weeks out from surgery. But she seems to be running into complication after complication. 
Right now she is in the early stages of kidney failure. We don't know if the damage done will be permanent or not. Her left lung is collapsed due to fluid build up in her chest. This fluid is also causing her heart and trachea to shift to the right. The surgeon will be coming in today to place another chest tube that will hopefully alleviate the fluid pressure that's collapsing her lung and creating the shift. They also found a clot in her right subclavian vein. This clot and her fundamentally changed cardiac physiology are creating a whole host of problems due to increased veinous pressure. The increased pressures are causing her to have capillary leakage. The leakage is decreasing her cardiac output and therefore generalized purfusion ability-which is further stressing her kidneys. The capillary leakage is being drained by her right chest tube and her PD drain. She has fluid flooding out of both. So much so that the providers can't assess and replace the losses fast enough sometimes. Due to the amount of chest tube loss she is staying in a state of metabolic acidosis. They keep having to replace bicarbonate to balance the ph of her blood. She is also still requiring blood products. Yesterday she got another transfusion of red blood cells and immunoglobulins, today she is getting plasma. She also is requiring albumin every 6 hours since Friday. Plus she isn't tolerating feeds again due to all of the cap. leakage. The lipids from her breastmilk seeped out of her intestines into her lymph system and into chest tube drainage.
We're hoping things start to turn around soon but I don't think it's realistic. The clot in her subclavian vein may take weeks to dissolve. She is on an increased dose of heparin now, but that'll only prevent it from growing. It has to dissolve on its own. Who knows how much of her veinous pressure is due to this clot and how much is due to her new physiology. It's all got us pretty worried for Avelyn's overall well being. 
On top of these new worries she still has the old ones. The resolving (per head circumference measurements) subdural bleed in her occipital area. Worries for endocarditis and sepsis (although no lingering signs exist). Decreased gut purfusion. Difficulty managing pain and sedation due to her length of need and growing tolerance. When she is awake she's in a state of delirium. It's heart wrenching. 
We are so grateful our little one is alive and still fighting but damn....we really miss our baby and she deserves some peace and comfort. I sincerely hope and pray she starts to improve soon. She has a lot to do and see in this world. We can't wait for her to get to be a baby. 
To sleep comfortably, have a full belly, smile, laugh, be pain free and just do the things little babies should be doing-not fighting for survival.





6 comments:

  1. Our precious girl is still so beautiful and just fights on despite the size of the struggle. I honestly don't know how to relay the strength I see in the three of you. I can't imagine the daily wear and tear on the emotions that you endure. You are amazing parents and I so wish I could do something to help. I sit in ignorance of what most of these things mean and I feel so bad asking you to explain. I know it hurts to rehash it all. I've decided to try reading the blogs first in hopes of preventing that from now on. She is getting a little better in some respects so I will take those marks as positive and keep praying for bigger strides. I hope you will tell me if there is anything you want or need that I can do to make your day a little easier. Those things will at least make me feel like I haven't totally abandoned my baby girl as I leave you Sundays 😔 Your Momma loves you little girl ❤️❤️

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  2. PRAYERS PRAYERS PRAYERS AND MORE PRAYERS <3

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  3. We are still continuining prayers for healing and strength. Sending lots of love y'all's way.

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  4. May you have peace as you make this journey of love with Avelyn.

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  5. It was great meeting Avie and seeing you guys. It breaks my heart to see what you all are going through, but it amazes me how strong the three of you are. Can't wait until you're all on the other side of this battle.

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  6. Sean & Somer, Our hearts ache for you and your precious girl. She has fought more in her short few weeks here than most people fight in their entire lives. Lance and I can't imagine the feelings of pain you and Sean suffer watching baby Avie in pain...it's only something a parent going through it would understand. You guys, like Avie, are so strong and it is so humbling to hear your journey. Lance, the kids and I pray for you all every single night. We think about you three all day, every day, and pray that you, Sean and Avie will one day be able to live the normal life that all children and parents are destined for. We pray you feel the prayers coming from all different directions. We pray comfort and healing are right around the corner for you all. Our hearts are broken but our prayers are strong. May God bless you and your family. I look forward to hearing positive things soon. You are strong, brave, and the most incredible parents I have ever seen. We love you all.
    -Lance, Courtney, Presley & Trey Stahlman

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