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Let Go and Let God

on September 30, 2013

Audrey has had a rough time since our last blog posting. The g-tube that sends her feeds into her stomach has been leaking. Each time time this happens they either slow, reduce or stop the feed completely. Several times the tube has been removed or replaced. It makes it difficult for Audrey to gain any real weight when this is going on. Sure, she receives nutrition through her IV but things would be so much better if she could have feeds that did not leak. Mommy also struggles to see the milk she worked so hard to make being spilled all over the place. I actually scared the poor milk man because he brought milk down while her feeds were suspended and it would be wasted. Hey, liquid gold does not come easy for a mommy feeding twins! Audrey should be receiving another new (bigger) tube today. We are praying that this one does not leak and allows her to “eat” enough to gain weight.

Gaining weight has become a higher priority than stretching or growing her stomach and esophagus. Originally, our baby girl was scheduled today for a scope to check the progress on her EA. However, her heart surgery has become priority meaning she really needs to pack on the ounces or pounds if possible. Early last week Audrey began working much harder to breathe. Her bloodwork came back abnormal showing a considerable rise in liver enzymes for several days. In just a few short days we watched our baby go from looking stable to not good. An ultrasound was performed showing an enlarged liver. Her respiratory rate was more than double and at times triple her normal rate. A chest X-Ray came back showing cloudy lungs. Several of her pediatric surgeons said these were all signs of early heart failure, but her cardiology team was not convinced heart failure was the cause of the sudden spike in liver enzymes. So more blood was drawn for more tests to be run. Our baby became pale. Results came back normal. Infectious disease doctors were consulted. Neonatologists and GI doctors were brought in. But answers did not come.

A few weeks prior to this a special visitor came to meet Audrey and Asher. Our visitor was someone that is so special to Mommy. She brought with her a necklace with two charms. The top charm is a beautiful cross and underneath of it lays a silver circle that says, “LET GO AND LET GOD.” Mrs. A. explained how during some treatments her husband received, she would rub that charm as a reminder to give it over to God. I found myself rubbing that charm and praying harder than ever. I questioned doctors and cried with frustration as they did not seem to agree with the cause of this sudden change in Audrey. I did not want to leave her side at night. One of the doctors promised she would look in on her through the night and call me right away if she were to get worse. She urged me to go home to the Ronald McDonald house and rest. I did go to the house, but rest did not come. I spoke with my husband who was at our real home for work. We shared our frustrations and I knew that he wanted to be with us to push the doctors for answers. When we ended our phone call I reached out to someone that I knew could get me grounded. Upon hearing the news she instantly quoted several bible verses and let me know it was ok to be angry and scared. She then told me five other Christian women were praying over our situation right then. I felt overwhelmed that people who do not know us would spend time petitioning God on our behalf.

The next day a cardiologist came in to check Audrey over. I was able to have a great discussion and voice some concerns with her. Her responses helped to ease some of my fears. Yet there were still no answers to her sudden change. My husband came down that afternoon. We sat with Audrey and prayed. We talked to doctor after doctor and listened as they attempted to piece things together. They changed some of her medication dosage and talked about intubation and steroids. I once again I did not want to leave her side but exhaustion was taking over. I was afraid that we could get a phone call in the night telling us to hurry over that she had become worse.

The next morning we did not waste time getting up and around. We walked into Audrey’s room and were shocked. She looked like a different baby. We were questioning if they had introduced steroids as she was obviously not intubated. We must have looked funny to the nurse just standing there wide eyed in shock looking between one another. Our daughter’s respiratory rate was in her normal range. She was no longer working so hard to breathe. The nurse came in and informed us that her liver enzymes had started to come down. Our baby girl looked good! Praise God!

She has spent the last three days doing well and looking great. Audrey has even had more awake time where we talk about what her room at home looks like, what kind of activities we will do once she is released from the hospital, play games and sing to her. It has become a contest to see who can make her smile at them. I think Daddy may be winning there. We could not be more excited.

Today Audrey will be having an echo on her heart in preparation for heart surgery. The doctors will be giving us the surgery date soon. They would like to see her put some more weight on prior to the actual surgery, but have said if she needs it now they could do it. In the meantime, Mommy is learning when to let go and let God or when to bring out her momma Bear! Sorry milk man!

It has truly been uplifting to receive so many cards, well wishes and prayers from everyone. Thank you is not enough to cover the blessing we have received. But we do thank all of you. Many people are still inquiring about our needs and they continue to change. Here is a list of things that would be most beneficial to us at this time:

Prayer (always first and most important!)
Gas or Visa cards (Josh is back to work and will be driving back and forth a lot)
Visits (we are becoming aware of the need to spend time with others and get away from the hospital some)

Exodus 15:2
“The Lord is my strength and my defense; he has become my salvation. He is my God, and I will praise him, my father’s God, and I will exalt him.

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One response to “Let Go and Let God

  1. Jane Lacher says:

    What incredible news about Audrey’s rebound! Our God is so amazing! I continue to pray for her feeding tube to remain intact, for her to gain weight, for the doctors to be guided in the right direction, for safety when traveling, and for His peace to flood your soul. God is holding you so very tight and she is safe in His loving arms.

    May God’s Peace surround you always,
    Jane Lacher

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