We woke up this morning and started heading to Evie's room about 5 minutes after seven. When we arrived Evie's heart rate and blood pressure were low and dropping. Within 60 seconds doctors and nurses were rushing to her bedside as they feared she was crashing. We were in shock. As they worked to stabilize her, Nicole and I were moved to the waiting room. Within a few minutes the surgeon joined us to say that though they are working hard to stabalize Evie, there are a few possible things going on with her and they are not good. He said that Evie either was having a brain bleed or an infection. If it was a brain bleed, then Evie is finished. If it was an infection, Evie was in extreme trouble and would be very unlikely to survive. He left us to go back into her room as they were doing an ultrasound of her head to determine if she did have a brain bleed. About 6 minutes later he returned to say that it was not a brain bleed--and it might not be an infection either. Allegedly what happened is that a circuit on her ECMO machine had malfunctioned, the machine was not filtering CO2 out of her blood. Her heart was reacting to that. When the machine was fixed her vitals started to stabilize. She is currently stable. It was one tiny little tube that came partly disconnected for an unknown period of time.
Nicole and I don't know what to feel right now. Sure we are glad that it was not a brain bleed, but the idea that such a simple and stupid malfunction could have cost her life is infuriating! Additionally, we don't know how much this has set her back. Her ECMO flow that had successfully remained in the low 300s most of the night is now back to full blast. It is undetermined how this will effect our efforts to wean her off the machine. Additionally frightening (if not more) is that we don't know how long her blood was not being effectively oxygenated and there are large looming questions about how low 02 levels might have damaged her brain. We just don't know and we won't know unless/until Evie gets off the machine, wakes up, and can have a complete neurological exam.
This morning's events only reaffirmed the truth that as long as she is on ECMO she is at incredible risk. Through this out of control roller-coaster ride Nicole and I have struggled to understand where God is in all this and what prayer/faith/and hope are for us right now. I know many people want to pray for very specific things, here is what I'd suggest: that her brain is protected from any potential brain bleeds, that her brain function is protected from the lack of 02 she experienced this morning, that she'd be protected from infection, and that she has not been set back so that we can't continue to wean her off the machine.
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My thoughts and prayers are with you all. This is a trying time and I cannot begin to understand the emotional and spiritual stress this has been for you. Please know that an entire community is praying for Evie's health and your peace. May God grant Evie the strength to truly shine and shed these machines. May you all be filled with the peace that is God's to give, and may those charged with Evie's care be given the wisdom and diligence to nuture her delicate state. In Christ - Eric
we're with you, we're holding you up.
It breaks our hearts to hear everything you all are going through. All of us here at North Park are continuing to surround your family in prayer.
How terrifying! Please, Lord, heal our Evie Marie!
Matt & Nicole,
You and your little Evie are in my thought and prayers all day long. I will be praying that God heals her and gives you peace and comfort. You all are in my prayers. Shar
So many of us have been waiting and praying and checking this website multiple times a day for the most recent updates. We will never understand what this is like and while words most likely seem futile at this point, somewhere in your souls, I hope that you know that you are not alone. We stand by your side, praying that God's presence would somehow be made known to you amidst the uncertainty, the chaos,the numbness,and the entire range of human emotion that we imagine you and Nicole to be experiencing. I am so, so sorry...
-Jen Z
Dear GOD
Hear our prayers for this family and for strength they sure need to get them through the next few months with baby EVIE.PLEASE GOD say extras please she is one sweet little baby girl.
Matt and Nicole please stay strong.
God will do the rest,have faith and love.
The Kings
Nova Scotia
Canada
Thank you God for the dedicated medical staff who are doing everything in their collective power to heal Evie.
Thank you God for the technology to keep baby Evie going, even if it is imperfect.
Thank you God for a surgeon who is up-front and honest about Evie's condition at any given moment, to keep expectations realistic.
Thank you God that Matt and Nicole have each other, to support and strengthen each other through this terrifying ordeal.
Thank you God for the ability of both Matt and Nicole to be there at the hospital full-time throughout this trial.
Thank you God for health insurance.
Thank you God for family, friends and even a community of strangers from across the continent who are praying nonstop for Nicole, Matt and Evie.
Thank you God for those who deliver clean underwear to the hospital!
Please God make Your presence known beyond a doubt, please continue to hold Nicole and Matt and Evie in your infinitely and perfectly loving arms, please bring them comfort, healing, faith, love, peace and strength as they abide in Your embrace.
Amen! So be it. Prayers on behalf of all of you continue. N Coyle
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