Tuesday, August 19, 2014

Three steps forward, two steps back...

It's been a rough 24 hours for Aberdeen.

Her breathing had been getting progressively labored and she was vomiting more after feeds than she had previously, so we had our nurse sit with her most of the night to get her opinion on things. She agreed that these signs were worrisome and asked that a chest X-Ray be done. The scans showed some fluid in Abby's lungs (a sign that her heart is working too hard again).  She was put back on some air support, had her IV reinserted, was started on some medication to help remove the fluid buildup, and was put back on an IV dextrose solution. After performing another echocardiogram, the heart failure team surmises that her symptoms are due to the persistent PDA and are talking about closing it surgically sometime next week (though they will be doing additional echocardiograms between now and then to determine whether surgery remains necessary). While the idea of our tiny baby having heart surgery is obviously daunting, it sounds as though fixing this problem may make a big difference in how efficiently her heart (and thusly the rest of her body) is functioning.



Jameson and I had a rough 24 hours right along with Abby.  Since she was born, we've shed a lot of tears and have been feeling as though we've been run pretty ragged. To regress after things were seeming markedly better has been defeating, and it's been really difficult trying to manage our fear for her health when it's all out of our control. Something I'm really struggling with is that I can't stand the idea of leaving her side for more than a couple minutes for fear that something devestating might happen. Obviously this hasn't been great for my mental or physical well-being. We're still trying to figure out how to exist in our new reality, and haven't struck that balance yet between taking care of ourselves and taking care of our daughter - especially when there's so little we can do for her right now. We wish things were easier for our baby girl - that she didn't have to work so hard all of the time.

She's slept most of the day today and seems much more comfortable. We have been assured that these kinds of setbacks are pretty common, but we're admittedly worn out emotionally. 



Some reflection:

Something we've thought about a lot over the past nine days is how blessed we are to have been in the right location and connected with the right people throughout this journey. We are thankful that we are currently stationed in Dayton as opposed to where we were in South Carolina, where our options for care would have been much more limited. We are thankful that we were being seen by Dr. Wenckus at the base, who noticed the craniosynostosis where other MFMs may not. We are thankful that she referred us to MVH, where Dr. McKenna was insistent that something was amiss with Abby's heart and wanted an echocardiogram performed upon birth even though more than one cardiologist thought that her heart looked ok on the ultrasounds. We are thankful that we were within an hour of one of the best Children's Hospitals in the country, that even has a specialty group for Abby's condition.  These, and a number of other things, have us trusting that God does have a plan in all of this - it isn't just coincidence. Though we are struggling with what that plan may mean for Aberdeen, we feel certain we are exactly where we're supposed to be.





5 comments:

  1. Like you said...God has a plan! Stay strong in your faith. My thoughts and prayers go out to your little family <3

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  2. Well said! God is sovereign! He not only knew where you needed to be, but who needed to be with you! God is a good Father and we can trust Him in every situation!

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  3. Bethany, Jameson, and Abby- We are praying for all three of you- for strength beyond yourselves, for peace, for the doctors- we are simply praying without ceasing. I cannot imagine the struggle you have as a Momma, Bethany, but remember you have to take care of yourself to take care of Abby! We love you guys!

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  4. I am so sorry. I cannot fathom your suffering and it breaks my heart to know how difficult this time is for you guys. I am praying constantly for you, Jameson, and Abby. Love you all!

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  5. Praying for your sweet family. The Great Physician is in charge. Praying for peace and patience as His will is done.

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