Sunday, April 1, 2012

Audrina, 38 days old.




You must, you must think I'm strong...to give me what I'm going through. 
Well, forgive me; forgive me if I'm wrong, but this looks like more than I can do, on my own. 
I know I'm not strong enough to be, everything that I'm supposed to be. 
I give up; I'm not strong enough.
Hands of mercy won't you cover me? Lord right now I'm asking you to be,
strong enough for both of us.
-Matthew West, "Strong Enough"

Today has been hard, we learned a few more clues about what's going on with Audrina, and some of them were surprising. At first, it looked like we were just dealing with her tiring out from the RSV. The second morning here, she started making eye movements and jerking that looked a little like seizures... I caught the episodes on tape and showed them to the attending, who took my phone to the neurologist. He ordered an EEG, and they were finishing setting it up when Audrina started to get distressed. We were transferred over to the intensive care unit, where I was told I would have to leave the room so they could stabilize her. I called Adam and asked him to come stay with me in the waiting room... after 90 long minutes waiting, they came and got us. She had a spinal tap and many other things done while we were gone. I didn't hold her much that night since the slightest thing was setting her heart racing. 

The next morning, the neurologist stopped in to tell me that he didn't see any seizures, but that her brainwaves looked very immature for a now 36-weeker. He said he wanted it to run for a couple more days so he could see what she was doing. Something he saw in that EEG, combined with her symptoms, made him decide to order a metabolic workup with blood and urine. Today I found out that those tests showed elevated levels of Ammonia and Lactate. They will be repeated to be sure, but this is a sign of metabolic error and the toxins building up could be the cause of her tachycardia and apnea. She had an ultrasound done of her brain, to check for brain hemorrhage and thankfully they did not see any. They also ordered an echocardiogram to rule out heart problems as the cause of her cyanosis.

Today, the cardiologist came to talk with me, and said the echo showed decreased heart function. The good news is that her heart is structurally perfect - its just under a lot of stress. So this issue becomes the old chicken and the egg story - is the stress causing the heart to function poorly, or the decreased function of the heart causing the distressed breathing? Tomorrow morning they will draw a cardiac workup and those numbers should tell us if the heart damage is new or old. They are also going to repeat the echocardiogram tomorrow and see if this issue is progressing or improving in any way. 

Audrina is pretty stable now and doing well maintaining her oxygen saturation on the continuous higher level of oxygen. Her heartrate is over 200 alot, and its making her very tired and lethargic. She isnt pooping well, so she got a suppository tonight. She has been fussy and in belly pain, so mama was sooo glad to see her get some relief. 

Hopefully more answers tomorrow.... I'll update everyone when I can. Thanks for the support - scary to think we could be dealing with life-threatening metabolic disorders, heart problems, brain issues... I never imagined. Audrina is almost 6 weeks old and has only spent 8 days outside of the hospital. Did you know Audrina means "noble strength"? Neither did I, but it certainly fits her. I'm so proud of how hard she's working to fight off whatever is going on in her body. We will continue to be here day and night waiting for her to get ready to come home again. 


5 comments:

  1. Thinking of you all. I'm glad most of the "worst" things were ruled out! ((hugs)) Hang in there, mama. I can only imagine how hard this must be based on my limited experiences. I think of you often.

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  2. kim...i know we havent met--i knew adam a little bit in highschool, more knew of him b/c of people that i was close with..but anyways, i have followed your blogs like crazy to stay updated on addison and now audrina and i just wanted to tell you that although i havent met you, i can certainly say you are a beautiful person...your faith in God through such enormous struggles is quite admirable....your girls are SO LUCKY to have you and adam for parents (i worked in childcare for 6 years and have seen my fair share of rotten parents) you two are absolutely amazing in your faith and fights for your children's happiness and health.....stay strong and keep God next to you every minute of every day-He can and will get your family through this...continue to trust in Him with all your heart and soul.....your family is in my prayers, i live in grand rapids now so im not sure i can be of much help but if there is anything i can do to ease your struggles please let me know...God Bless

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  3. xoxo praying for Audrina, for you and your DH. Hope she recovers very fast and you can take her home again soon!

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  4. i am praying for audrina and i have her on the prayer chain at my church so there is plenty of prayer warriors out there for her. I pray everything turns out fine with her keep your chin up and your head held high and take it to the lord... even though i dont know you guys i only know adam from school i think about your lil girl all the time and pray that she will be ok

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