Monday, May 27, 2019

One Month Old!

May 20
Adelyn is declared fever free! We continue to wait for lab results (which take 48 hours to culture) to see whether she has an infection.

Genetic test results came back normal, which is great news!

That morning, Adelyn had three apneic episodes (brief periods when she stops breathing) while awake. She recovers without much intervention (aside from repositioning and blowing in her face), but has scared Mom (who was bedside) and nurses alike.

Through the afternoon, doctors look for reasons for her apnea. Adelyn has a chest x-ray, a head ultrasound, and a series of x-rays to follow the path of her shunt, all of which come back normal. This means her apnea is not being caused by an issue with her lungs, a problem with her heart repair, or a mechanical failure with her shunt.


May 21
Lab results come back showing that Adelyn does not have an infection! The last of her stitches from her heart surgery are removed.

However, Adelyn's discharge from the hospital is put on hold for at least five days as doctors continue to explore possible causes for the previous days' apnea. Late Monday night her head was covered with 25 censors and wrapped in gauze as neurology watches her through a camera and evaluates her brain activity during a seizure study. After 12 hours the results are inconclusive, so they decide to continue monitoring Adelyn for a full 48 hours.


May 22
The seizure study ends, and doctors conclude it's unlikely Adelyn's is having seizures. Her head is unwrapped.

Acid reflux becomes the main suspect in the hunt for a cause of the apnea. Though she is already being treated for reflux, she is prescribed an additional medicine and nurses begin "venting" her more frequently (an pediatric critical care method of burping an infant by pulling air out of the stomach through the feeding tube).

May 23
Thursday morning Adelyn has another apnea episode where her oxygen levels dropped all the way to 30%. She has quite an audience for this performance, as the Chapman grands and Chleboun family were visiting and Adelyn's team of doctors (who were in the middle of "rounds" where they make a daily visit to see and discuss each patient's care) were all at her bedside. Later in the day she had another apnea event where she desaturated dramatically again. James and Laura are thankful doctors were able to observe Adelyn during one of these, and also grateful Adelyn recovers from both without intervention.

Adelyn's discharge clock is reset and her release date is pushed back another five to seven days. James and Laura are disappointed that her homecoming keeps getting delayed, but they are grateful to be in medical care rather than at home during these frightening moments when their daughter stops breathing.

The seizure study head gear goes back on. Neurology hopes to be able to catch one of Adelyn's more serious episodes while closely monitoring her.

May 25
Laughably, Adelyn does not perform her tricks for neurology. Nevertheless, they once again conclude with a fair amount of confidence that she is not having seizures. Doctors agree gastro-intestinal issues are the most likely cause for her apnea.


May 26
Adelyn is a month old! Happy four weeks of life, sweet baby girl.

James, Laura, and all of Adelyn's nurses and therapists continue to help her work towards feeding and growth goals. Adelyn is slowly gaining weight and strength. Doctors say they will revisit her discharge after the long weekend.


Now
Please pray:
1. Praise God that Adelyn's fever has resolved and that she is infection free!
2. Praise God that her incisions have all healed!
3. Praise God that she is gaining weight and strength!
4. That the cause for her apnea will be discovered and properly addressed to mitigate future events so she can go home safely.
5. That her acid reflux meds would treat her discomfort and that she would learn to take breastmilk from a bottle and then learn to breastfeed.
6. That discharge will become a reality for Adelyn soon, and that James and Laura would be competent and feel confident in all aspects of their daughter's care.
7. For God's provision in all the Rosenbergs' needs.

Help!
We are so blessed by the ways many of you have moved toward us during such a difficult time for our family. As Adelyn's time in the hospital extends, we are more and more grateful for your continued help. Your prayers, meals, encouragement and gifts bless us so much. Thank you!

As before, if you are local to Durham, NC, you might like to participate in the MEAL TRAIN that Laura's sister has set up for our family. Not having to worry about cooking meals has eased the stress in our daily schedule. We also have a GIFT REGISTRY for Adelyn. And finally, if you would like to contribute toward Adelyn's medical expenses tax-free, please get in touch and we'll provide you with the necessary information to do that.

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