Wednesday, March 16, 2016

Searching for Progress

I guess I have put off updating long enough. I kept delaying thinking that things would turn around and I would have something positive to report. That isn't the case. Avelyn continues to struggle. 
She is still in renal failure. Dialysis has been stopped but could be restarted at anytime. Her urine was picking up over the last couple days, although still only about a tenth of what we would hope for her- if that. Now it's all but halted. Her chest tube output was also improving for two days but today's looks like it'll be higher than ever. She is also
showing signs of heart failure again. She got an echo yesterday that showed decreased function of both ventricles and increased tricuspid regurgitation. The reversal of these findings is dependent on her kidneys, lungs and chest tube outputs improving. She isn't maintaining her oxygen saturations well either. The other morning she dipped into the 50%'s and had to be be bagged up with 100% fiO2. For a while her saturations didn't budge, even with the 100% oxygen and increased pressure. Her left lung is down and consolidated. She isn't diureasing the fluid that has third spaced into her chest wall interstitial spaces. This makes it harder for her to ventilate and harder for her right sided heart  to pump. She was put back on nitric oxide and epinephrine after her desaturation episode and echo showing decrease cardiac function. These seem to be helping her ventilate better.
She now has an active GI bleed in her stomach and tracheal infection to top things off. The echo and ultrasounds also show that the clot in her subclavian vein has broken up but that she has a new one in her inferior vena cava attached to her PICC line. We were hoping she could come off the heparin but that doesn't look possible with this new clot. The PICU doc's don't seem too concerned with the bleeding but I think they are just trying to be reassuring. They say it could be worse, and yea I know that. But she is a super fragile cardiac baby with a host of problems already. She can't handle allowing this bleed to go unchecked. I requested a GI consult. We'll see where that goes. For now the nurses are pulling about 10 ml of blood off her stomach every 1-2 hours. No amount of reassurance could convince me that this is inconsequential in a baby her size. 
I am so incredibly disappointed about her chest tube output shooting up today. We have been hoping and praying for a turn around and just aren't seeing that. If she wasn't pouring out of her chest tubes she would have the intravascular fluid volumes needed to produce urine and the protiens needed for healing properly. Right now she can't even go to the cath lab to balloon up her tiny left pulmonary artery (which would likely help decrease the chest tube output) because of her kidney failure. The dye needed to preform the procedure is quite hard on the kidneys. She wouldn't be able to handle it. So we wait and we watch our baby decline, or that's what it seems like is happening. Sure, she is showing improvement in some areas but not enough to quantify. 
We are surrounded by truly sick children, ours included.
Avelyn's eyes are sunken and often dulled by pain and or the medications needed to lessen pain. I wouldn't doubt we also exhibit the same hollow eyes. I've seen the look on so many other parents around us. If only our children could be healthy as all babies deserve to be. If only we could hold them, soothe them and see them smile. Hell at this point I'd be happy for a wet diaper. Seeing my child struggle and get no where is so disheartening. I read posts by parents complaining of feeling helpless. You don't know helpless. You may think you do, but you don't. Hug your child. Rock your child. Look into their eyes and know they recognize you and are aware of your presence. Please do these things and feel grateful for each. The day I can do any of them will be truly glorious. It's the day I pray for every day and am so often reminded that I am not guaranteed. 
While speaking to another heart mom, whose baby was not doing well after her heart transplant, she described looking at her baby's car seat the other day. I knew exactly where she was going before she said it. I've done it to. I've stared longingly at that stupid seat and cried. Why? Because we may never get to use it. That's helplessness. Looking at your baby on ecmo and not being able to find a place to kiss that isn't covered with a dressing, tube, wire, incision or bruising is helplessness. Not recognizing your own child due to the edema is helplessness. Sitting day in and day out at your child's bedside reading out loud because you can't stand where your thoughts wonder is helplessness. Carrying around and crying into a pair of booties during 16-18 hour long open heart surgeries because that's all you could grab before she was wheeled out of the room is helplessness. Waiting for a phone call to know if your child is alive or not, that's helplessness. So please, for the sake of those who know what being helpless feels like--rejoice in good health where it exists-- to some it is but a dream we chase but may never catch. 
The photos below show Avelyn in delirium, extremely dehydrated and the last is her on ecmo. I never shared it before because it is so painful to look at. It still sickens me to think of her like that. Today marks a month ago that she was on ecmo. This is what my child has endured. This is what she has endured and continues to fight against. I am helpless to save her from her pain and struggle. Truly helpless.


  1. Somer I can't begin to understand what you and Sean are going thru! But Baby I now one thing for sure God is there with you He may be hard to see at this time and for sure we don't know what He is up to with Avie! But know He love you all and wants the best for Her! I'm sure that is Super hard to see right now. But trust me I know it's true.I wish as you do that there would be something I could do for Her other than pray! Although prayer is a powerful way to help someone, at times like this it just doesn't seem to help. And alot of the time it's not answered the way we would like it to.But I have to Hope and pray the best outcome for our little Avie and I hope Baby Girl you will keep doing that for Her and I know you will. Just remember God Loves Her too even more than we do.For He Has already prepared a place for us all to be together for ever and we want have be separated ever again.And there definitely want be any drain tubes or venatators there thank God! You know if you need us for any reason you can call us anytime! I'm so sorry we haven't been able to get there to see Y'all yet but we are coming even if you get to take here home soon, which what we are really looking for! Love you Baby Girl!

  2. My sweet baby, I so wish I was there with you right now. I sit & cry begging God to give you eyes to see His Hsnds @ work. Ears to hear His voice of comfort, and a Hearts desire to know His plan. I also beg for signs of progress. They don't have to be huge signs just signs. I want you to know that our Avie is getting better. I want you to hold on to your dreams of holding her, soothing her, and chasing her as she toddles across the room. I want all those wonderful simple pleasures for you and Sean. I dream of the hustle & bustle of life with a baby in a car seat or stroller, high chairs, wet diapers and drool & spit up. Late night baths and early morning bottles. Yes you all deserve these things and I have to believe they're coming baby. So I hold onto Gods promises that He works all things for our good. That someway somehow all of these traumatic days that you are enduring has some huge dramatic purpose in His grand scheme--I just don't know what it is. My simple mind just can't comprehend it. But it doesn't have too-I am just supposed to trust...blindly trust. I too am having difficulty with this. I have prayed for forgiveness and then screamed and cried because I can't help my baby either. I know this -Avie is Beautiful. Strong. The absolute strongest human that I have had the pleasure of meeting. I know I adore her. I don't pretend to know Gods will for her but I do know that He entrusted you & Sean with this incredible little wonder. And I know that you two have proven over & again how much you love her. God loves her more. That is so hard to understand but He does. Hang on to that baby. He is with her every moment as He is with us even though we can't see or feel Him. Just close your eyes and ask Him to reveal himself to you in this storm. He loves you-He says In his word that He loves you more than I do...I can't wrap my head around that. But I'm begging Him to wrap his arms around the 3 of you and give you comfort & peace that only He can give. I love you with all my heart my precious baby girl as well as I do our precious Avie. Kisses to you all & especially my sweet jelly beans 😩🙏❤️

  3. Somer, I'm so glad to see an update on Avie, even though I know it must be terrible for you to write a post that doesn't contain the good news everyone keeps praying for. And I want to sincerely apologize for I imagine I was one of the parents feeling helpless about having a sick child. I did not mean to seem insensitive. I've learned that the hardest part of being a parent, by far, is seeing your child in a difficult situation, but not being able to do anything to help. Obviously, you and Sean are experiencing that at a level that most of us will never understand. I truly can't imagine what you're going through. But please know that I love you and I think about you and your sweet girl every single day. I can't wait until the day that she is down here playing and laughing with all her cousins. ❤ Katie

  4. It's quite likely you have no clue who I am and that's A-ok! I know that this has to be very difficult. Your darling daughter & sweet family are strong.
    I will be sending every prayer & positive thought your way. I'm heartbroken you & your baby are going through this. Hang in there & know there are so many people who care about you! Thank you also for sharing and allowing others to care and support in whatever way. ♡♡♡