Wewiggins’s Weblog

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How Do You Do It?

on November 6, 2013

It has been a little while since we updated you all on Audrey. And while the majority of you follow her FB page, Audrey’s Army… Not everyone has FB. Quite a bit has happened since the last update. I’ll give the abbreviated version (if possible).

Audrey was having chronic leaking from her GT site. She was taken to the Or to have a GJ tube placed. There were complications with the placement requiring the surgical team to open Audrey up and repair her intestine. One week later a contrast study showed leakage and she began showing signs of infection. She was taken back to the OR to be washed out and repaired again. They put an unconventional feeding tube (broviak) in her lower intestine. That is where she is currently fed.

All of this caused her heart surgery to initially be put on hold. At first it was frustrating, but stay with me because God had a plan. The cardiology team believes she may not need open heart surgery now or possibly ever. The physiological hole is shrinking even though the actual hole remains the same. At this point cardiology will continue to monitor her heart situation, but have no plans to repair.

Once her heart was figured out the pediatric surgery team wasted no time getting Audrey back to the OR for her gap sizing. The gap went from being 4 vertebral bodies to 3. That is awesome considering she was rarely on feeds And had mostly IV nutrition for the last month or so. She is scheduled to have another sizing scope on November 22nd and possibly be repaired in the first or second week of December. We are hoping the gap can get to no more than 2 vertebral bodies and she can have a primary repair.

She had a bit of a melt down Saturday. Ok, it was a full blown exorcist baby melt down that lasted several hours. It was the most I had been scared since the Twiggins were born. Nothing seemed to calm her for the longest time. Her head and limbs flailed about as she screamed. We watched her heart rate increase and eventually sit in the 240’s for about 2 1/2 hours. Nurses and doctors tried their best to locate the cause and administered dose after dose of medication attempting to calm her enough to get an IV. Her temperature continued to rise capping out at 38.8 degrees Celsius. I am thankful that this did not happen on a day that I was alone here with her and Asher. Grammy and Aunt Max were a gigantic help with taking care of Asher and Bailey so we could focus on getting Audrey under control. And thankfully, she did eventually calm.

Doctors believe she has a touch of pneumonia and are treating her accordingly. But we all know that is not what caused her meltdown. Pain did. Unfortunately, she cannot tell us where that pain is coming from and all her tests have come back normal. For now, she is calm and happy except during normal Audrey melt down incidents such as dirty diapers, temperature being taken and heel sticks.

So, that brings me to the title of this post. Time and again I have been asked, “How do you do it?” Even my husband has asked me this question. It is definitely not easy trying to care for two babies (one sick) and myself on a regular basis while being away from my other child and husband. And oh… Did I mention the sleepless nights either caring for a night/day confused Asher or worrying about everything (and everyone) else? Yeah, I’m exhausted! So when asked that question I have simply answered, “because I have no choice.” And everyone nods in agreement. Each time I give that answer something inside nudges me and says, “liar.” The more I give the answer the harder the nudge. So, I decided to actually sit and think about it.

How do I do it? To answer that “I have no choice” is simply not true. We all have choices. So many children are born with medical disadvantages and their birth parents choose to have another person(s) raise them. I have chosen not to do that. I love Audrey for everything that she is and will become, for everything God has made her and has planned for her. I clearly have and made a choice to raise my daughter medical conditions or not. So back to the original question. How do I do it? The answer is not alone. I do it with help from my husband, son, family and friends. With knowledge from the doctors, nurses, therapists and social workers. With guidance from those parents who have gone before us and walked this journey with their own children. But most of all…. I do it with His help.

God offers me His strength when mine is not enough. That is daily. Phil 4:13: I can do everything through him who gives me strength.

He offers me His hope when all seems hopeless. I definitely lost mine on baby exorcist melt down day. Jer 29:11: For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

He offers me rest when I am physically and emotionally exhausted. Matt 11:28: “Come to me, all you who are weary and burdened, and I will give you rest.

I surely am not some super woman who can just make it through this life on my own. And I am thankful that I do not have to. Because this friends is something that I could not do alone.

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8 responses to “How Do You Do It?

  1. Sue Cieslinski says:

    May God continue to bless you and guide you through this incredibly life changing journey.

  2. marge bowden says:

    Diddo….girl….Bud and I have been no way through what you all have…but this I know…..there are times He says ,,,,,don’t look with human eyes and judge the moments with our regular senses ….because He works beyond our senses…….and when our cups are pretty empty…He just keeps filling it up….do we have melt downs…you bet we do…and then He touches our spirits again renews our vision of where He is taking us and off we go….God has given the Wiggins such a beautiful gift,,,3 awesome possibilities…..Happy dancing with all that He is working in Audrey, way beyond what we even know to pray for….luf u all…m
    arge

  3. Mishelle Schoen says:

    You are gifted in describing this chapter in your life’s journey and recognizing Who gives you this gift, as well as every other. May God richly bless you for giving Him the credit. I love the verses you referred to for truly that is the root of your strength.

  4. Pat Parish says:

    You are a very special Mom to be there for everyone. God only gives you what he knows you can handle. You are always in my prayers and thoughts. Keep the faith. God bless you and your family.

  5. Karla Knapp says:

    You are an amazing mommy! I was told the at God only gives us what We can handle! I’m so glad he thinks mothers like us are special enough to have the children we do!

  6. I am reading a book on the life of David right now and this is what I read just yesterday: “Have you ever noticed that the colors of God’s faithfulness appear brighter when the backdrop of our lives looks bleak and gray?” David wrote so many of his beautiful Psalms chronicling the awesomeness of God when he was trapped in a cave, running for his life. As we have talked before, no one ASKS for circumstances that push us to our human limits or leave us with no hope of our own, but oh the beauty when we are in them that we receive the GIFT of seeing Him with us – feeling His daily presence and strength – and knowing that though He’s really been there all along, it sometimes takes our bleak gray for us to see Him! Love you all and pray constantly for you!!

  7. Lisa says:

    Well put. There is no way any of us could be handling all of this alone. What I also think to myself sometimes is not that I have no choice, but that I don’t dig any of the alternatives. We knew she had Down syndrome before she was born and we knew she would have some medical problems, and by choosing to proceed we made a promise to her that we would fight for her and be strong for her, and so that is what we need to do. I just keep telling myself that when things get hard. I’m sure we have more difficult times ahead, but it is what it is and freaking out doesn’t help the baby. (I just hope I can keep up that attitude when things get even harder!!!!!)

    Sending out positive thoughts to Audrey and hoping her gap continues to shrink a little every day! But even if it doesn’t, know that a primary repair could still happen!!!

  8. Connie Buuck says:

    I wish I wasn’t so far away! Just know that Tyler and I are sending prayers up on a daily basis. Sending hugs over cyberspace!! God will always be there to give you the strength you need when you need it. As the one songs goes: “He’ll find you in a hurricane!” Just hold on to that fact that He is always there. Love to all!

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