So I think we left off with our arrival at Seattle Children's Hospital. Again, I was lulled into a false belief that things would somehow settle down a bit once we got there. In a way they did as during transport Esther was on a different respirator and arrived with brilliant oxygen saturations and better than expected vital signs. She was improving!
The change to the hospital respirator was up and down for a few hours but the surgeons and intensivists were hopeful and felt they had a solid plan.
Being a nurse really hurt me. My knowledge of the instruments and values left me watching the monitors and loosing focus on my daughter. I would break and recover overwhelmed by God's intervention and the miracle that Esther was still here.
Meanwhile Rhonda was left at UW hospital, but recovering remarkably. They were planning on discharging her and she would be coming to be with us.
The doctors all treated me with great care, explaining what they were doing and how they were planning to proceed. I felt immediately that I could trust in them, and prayed for God's blessing upon their mind, body and spirit. For Him to guide and protect them as He was with Esther.
A relative calm and stabile state was achieved for Esther and I was able to concentrate on Rhonda and her arrival.
She arrived around 11:00PM and we dropped off our things in the sleeper room that is provided to parents of children in the NICU.
We then were able to spend time with Esther, get updated by the doctors and surgical team. The Surgeons have the largest say in her care and generally consult with the intensivists and other specialties for confirmation and sharing of ideas. With the current respirator settings and cardiac medications, Esther's condition was looking hopeful. We spoke of watching closely over the next 1-2 days with the idea of operating on her diaphragm in that time frame.
Rhonda and I went to bed with joy over God's gift to us. Terrified what the future would bring, but amazed at the strength and resilience Esther had been given.
We were awakened by a call to the hospital pager we had been given, Esther's oxygenation was not maintaining well on the respirator. We went down to the NICU and they wanted us to sign consent to give blood products. The thought was that by increasing her volume and adding more plasma, Esther's body would be able to better regulate and maintain stable oxygenation. We had nothing else to do but wait.
We had another chance to make an attempt at sleep (Rhonda had not slept since tuesday night and this was now early friday morning).
Again we woke to the pager. This time around 7:00AM. The doctors told us Esther was not responding to the blood tranfusion and the next step would be to start ECMO (a partial heart/lung bypass machine designed to relieve stress, allowing the organs to rest and recover).
Anyone familiar with CDH recognizes that ECMO is the "last ditch effort". That is not to say it is a death warrant, but babies are already at high risk for blood clotting and bleeding. ECMO requires the use of blood thinning medication to prevent clotting in the machine that could in turn be released into the body resulting in various tragic outcomes. In addition, the blood thinning medication increases the risk of bleeding.
We spoke in depth about the decision with the doctor and signed consent without hesitation. We would not be able to be on the unit during the procedure (large bore catheters or IV's placed in the neck) and so left to attempt sleep again. Around 9:30AM we got up to check on the progress. Doctors stated the start of ECMO went very well. The night nurse was leaving and stated they were inserting a PICC line (peripherally inserted central catheter or IV that ends at entrance to the heart) and we would have to wait to see Esther until they were done. She stated that she looked great and was doing good.
We decided to go for breakfast.
We sat down and prayed and received a page just before we started to eat. I went to the phone and was asked if we could come down to the NICU. I went back to Rhonda and she told me "we need to get back now. They just called my cell phone!"
Rhonda has been riding in a wheel chair and I ran pushing her down the hall to the elevator. I thought we were going to say goodbye to our baby girl.
We entered the NICU and were met at the desk by the charge nurse who told us Esther was not responding well to ECMO. Her face was somber, and she looked fearful. As we entered the NICU she told us that Esther's heart had suddenly stopped and the ECMO "stalled out" or stopped because of the sudden drop in pressure. There were somewhere around 30 doctors, therapists, specialists and surgeons at her side and filling the hallway all working together to solve the sudden issues. Rhonda bent in the wheel chair and cried out to God to "save our little girl". I joined her as we both cried and begging God to send His Holy Spirit and spare Esther's life.
A surgeon approached and explained that, although initially Esther had done very well on ECMO, she was not well and they were confused as to the source of this issue. They had performed a chest Xray and found that there was air in the pericardial sack (the fluid filled sack surrounding the heart) and an initial brain ultrasound was showing a small brain bleed. They had several theories regarding the source of each, but could not make a connection between the two. Yet another study revealed very poor heart function as well. With the brain bleed there was the potential that ECMO could not be continued, and that could very well spell the end of Esther's life.
The Lord intervened. Esther was stabilized.
Plans were made to pull back the ECMO catheter hopefully solving the cardiac and ECMO flow problems. If the unknown cause for the air in the pericardial sack did not persist, the air should reabsorb. The brain bleed was compared to prior ultrasounds and some speculation was made that the bleed may have existed prior to ECMO but could not be confirmed and follow up ultrasound was scheduled for 11:30.
By mid afternoon it was found that the brain bleed was stable and Esther was doing well on ECMO. She was very puffy but pink and beautiful.
I already miss seeing her powerful gaze, but have hope in God and His plan.
One thing I know, my God loves me to the point that he entered his own creation to die and rise again! To save me from my sin and take the consequence of it! I know too, that he didn't just die for me. He died for Esther, Rhonda, and every pair of eyes that reads this now. I don't know his plan, but know he has prepared a place for me and all who confess their sin and accept him as Lord of all.
It is easy to deny God when things are going smoothly for us. Life is distracting and blinds us to His presence. When we are pressed to the point of inability to "fix it" ourselves, we can see him. I can feel him in and around me covering me with His Spirit. Without Him I could not go on in this.
I have spent many days of this life I was given serving myself as "god". I have never found satisfaction in this pursuit. My only contentment is in Christ Jesus. He makes life matter. He changes everything.
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