After five long years of infertility, Avery Grace Akeman was born five weeks early on April 18, 2005. After spending 15 days in the Neonatal Intensive Care Unit, she was discharged home with an apnea monitor and what was assumed to be typical preemie isues. After being home for only nine days, Avery was admitted to Children's Medical Center in Dallas, as she turned blue four times that day. She spent another week inpatient at CMC only to be discharged home still on an apnea monitor with the hope she would "outgrow" these apneic spells. Unfortunately at six months of age, Avery had not outgrown her issues, but instead they were getting worse. She was re-admitted to Children's Medical Center for testing in hopes to figure out what was causing her to turn blue multiple times each day. Avery's doctors told me we would be there for about a week ... 149 days later, we were still there.
Through a series of events, medical professionals learned Avery's apnea only occurred when being fed by mouth. She did not have any issues if she was fed through an NG (nasogastric) tube. The apnea did not occur until two or three hours post feeding, and therefore it had not ever been thought of to be a feeding issue before. After trying many different plans of treatment, Avery was transferred to Baylor Our Children's House for intensive feeding therapy. She spent seven weeks getting wonderful treatment there, unfortunately, without any improvement in the area of her apnea. She was transferred back to CMC for surgery to perform a nissen fundoplication and G-tube (Gastrostomy or feeding tube) placement, as she was not taking any feedings by mouth at that time.
While I was beyond exhausted at this point, I remained hopeful the surgery might make a difference. However, once again, things worsened. After the surgery Avery began having serious bradycardia anytime food would enter her stomach at all. After many heart wrenching attempts to repair this problem it was determined Avery would be unable to have anything to eat or drink by mouth or through her G-tube. Instead, she would have to be fed through her intestines in orderto bypass the stomach. Fortunately, when Avery had food administered through her intestines via a J-tube (Jejunostomy tube), she did not have any apnea or bradycardia.
Avery's medical team contacted other hospitals and doctors across the country and even across the world. Everyone always came to the same conclusion: that it must be some very rare type of vagal nerve dysfunction. Unfortunately, this is where medicine failed Avery, as there is no way to assess the vagal nerve in children at this time. I was told on many different occasions that Avery would have more than likely been a SIDS (Sudden Infant Death Syndrome) baby if she would not have gone home on the apnea monitor at birth.
After 149 days in-patient I was more than ready to get my now, almost one year old, back home. Avery was sent home with a J-tube and the hope she might outgrow whatever it was that was causing her symptoms. Unfortunately, she was only home for 48 hours when she was re-admitted for significant dehydration. Avery has been in and out of the hospital repeatedly since then. She spent her first birthday, first Easter, first Thanksgiving, first Christmas and first New Year's in the hospital. Since then she has spent numerous other holidays in the hospital, as well, including three different Christmases. After nine months of being fed through the J-tube, Avery had another issue that had to be addressed: she had lost over two pounds. Without any other options she was placed on TPN (Total Parenteral Nutrition) and Lipids. This is IV nutrition that goes through a central line in order to sustain her life. We have worked with doctors from all over the US and abroad, only to be told they don't have anything new to offer.
In June of 2007, Avery was admitted to the Intensive Care Unit of CMC to attempt small drips of food back into her stomach. By the grace of God this was successful without any apnea/bradycardia. She is now able to eat anything she wants orally and it is a gift I will never take for granted. Unfortunately, Avery has some malabsorption issues in which her body does not absorb what she eats; and therefore she remains on TPN/Lipids to provide her with the nutrition her body requires.
Avery has over 12 different diagnoses, but not ONE to tie it all up in a bow with. There is no "syndrome" or diagnosis to identify exactly what it is that has caused Avery's little body so many different problems. Besides the malabsorption, Avery has significant hematology issues and is dependent on blood transfusions and iron infusions to keep her alive. She has Secondary Adrenal Insufficiency and has to take steroids daily to give her body the adrenaline it needs to keep going. She also has chronic lung disease, which causes many respiratory issues for her and lands her in the hospital often. These are just her top four diagnoses.
To date Avery has spent 508 days inpatient and had 28 surgeries. She has visited the ER more times than I could count and has three standing dr appointments each week. I remain hopeful that with enough time, Avery may "outgrow" her issues. The journey has been long, and while Avery has come a very long way, she still has a long way to go. However, I trust that God continues to hold her in the palm of His hand and THAT is the hope that keeps us going!
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