A Quick Turn of Events

“Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.”

Isaiah 41:10

 

If there is anything these last number of weeks has shown me, it is…. how out of control I am of this season we are in.  That there is tremendous freedom in letting go…and trusting God.  Giving Veya the space and time to rest and heal…while trusting God and surrendering my plans to Him.  It’s difficult to hold your children with open hands…but it’s the only way to get through this and come out the other side. 

 

Since our last update, Veya’s condition became very critical. Her left and right ventricles were still having troubles pumping well…and on the evening of December 29^th, she began to spike a fever.  (The fevers carried on for four nights and only came on during the evenings) We met with the Infectious Team who carried out numerous blood tests and various lab work, including
a lumbar puncture, to rule everything out and the results coming back have all been clear.  I also had my blood retested in case there was something missed during pregnancy that could have been passed on to Veya.  My bloodwork also came back clear.  We then met with the Metabolic team, and they took a closer look at Veya’s metabolism to make sure she was able to break down and process everything properly for her body.  Their tests concluded that her metabolic system was functioning well.  This has her medical team completely puzzled because the slow ventricle pumping is not a symptom associated with her AVSD and the persistent evening fevers were not linked to any known viral or bacterial infections.

This has prompted them to bring back the Genetics Team. The Genetics team has decided to send Veya’s bloodwork out to Europe for a more in-depth study and investigate Cardiomyopathy. What does this mean? The genetic specialists will be looking for a secondary heart condition. Specifically, any disorder that affects the heart muscle.  They will do this by taking one of Veya’s chromosomes and studying 200 genes found within that chromosome.  We have been told that they have put a rush on this for Veya and because she is in the NICU…we can expect the results to come back in about a month’s time.

So now we wait…..but time hasn’t really felt like it’s been on our side. As we have been making our rounds visiting at Veya’s bedside and holding her…it feels like we have been watching our baby girl slowly fade away on us.  Her color was completely lost, she was struggling through the fevers and wasn’t getting adequate oxygen throughout her little body. She experienced hypoxia on the evening of January 1^st and 2^nd which prompted her medical team to call a family meeting with Jer and I. 

When we entered the room with our social worker, we were met by very concerned neonatologists (doctors specializing in premature / newborn babies, cardiologists (heart doctors) + nephrologists (kidney doctors) AND we were introduced to a member from the Quality-of-Life Team.  It was then that we knew medically speaking our daughter might not pull through this.  Our daughter was now in the beginning stages of heart failure.

Though it was a very emotional and intense meeting, with so much that remains unknown about our daughter’s health and a lot that doesn’t make any sense….so many questions the team desperately needs answers for, we found ourselves equally at peace with whatever the Lord’s plans are for Veya. While the team was “fostering hope with great worry” (as they put it) for Veya’s health…we found ourselves surrendering all things unto our Lord.  Knowing that Veya is completely in the palm of His hands and he will continue to walk us through this with her.  He would see us through these next hours. Thank you Lord for showing us the beauty in surrendering all things unto you!