What I can share with you is this...God has performed a miracle in "our" Lily Grace. There is no medical explanation as to her miraculous recovery. NONE!
On Monday, January 14th, Jacques and I walked alongside Lily's hospital bed as they took her off to the Heart Catheterization lab to work on her heart. I was so excited about the huge potential for healing that this procedure held, and was hopeful that by creating a hole in her heart (fenestration) to relieve the pressure, this would also be our ticket home.
Instead, the heart cath nurse came out many times during the procedure to update us on Lily's progress, and it was never good. Lily needed a blood transfusion very early on (more of Papa's blood), and her blood pressure was so low that team became very nervous. The surgeon had four goals that he hoped to achieve through the procedure, but ended up only doing one...the most crucial one, which was to create a 6mm fenestration and use two stents to hold it open.
During this heart cath we were also given the news that the 4th open heart surgery that Lily had on December 14th to attempt to reattach her right pulmonary artery to her heart (in the hopes of restoring blood flow and oxygen to her right lung) had failed. The surgeons also reiterated to Jacques and I that Lily was really "sick". REALLY, really sick. They prepared us for what we would see in the recovery room. I just kept thinking about how awful she looked over the summer after her Fontan procedure, yet nobody "prepared" us for what we would see. They actually told us that she "looked really good" back then. No words or explanation could have prepared us for what we were about to see. The anesthesiologists had pumped her so full of fluids to keep her alive that Lily was completely unrecognizable to us. Her legs were purple from the waist down, that initially worsened every hour. Deep, dark, purple. The doctors were unable (for days) to even get a pulse below Lily's groin. Lily remained on a ventilator for 5 days after the heart catheterization. Children with her anatomy do not do well on a ventilator, and it is always the goal to get her off the vent immediately after surgery. For days, everyone (nurses, doctors, surgeons), kept uttering the words, "Lily is very sick". Jacques and I are not strangers to the medical wold now.
We knew that they meant our sweet baby girl was dying.
Right before our eyes.
Hours after the heart cath, it was discovered through an echocardiogram that Lily's fenestration had clotted over. We were now faced with the reality that Lily had a 6mm clot in her heart. It was decided that any attempt to break up the clot would cause immediate death. Lily still has this clot in her heart. She is on high doses of anti-clotting medication in order to prevent future clots, but it will not help with the large clot she already has.
While still in ICU, Lily began to make very small improvements, followed by huge setbacks and roadblocks. Fast forward a couple of weeks. Due to high spiking fevers of unknown origin, they decided to remove Lily's chest tubes. Lily has had multiple chest tubes over the past 9 weeks. Her pleural effusions were so bad that on most days she was dumping 1,000ml of fluid from her chest. The team discussed with us that perhaps these chest tubes had caused an infection, as evidenced by the fevers, and needed to come out. So, this past Monday, the chest tubes came out. We talked about the probable need to replace them within the next few days.
BUT...God had a different plan. For no medical reason or explanation, Lily's lungs have began to improve on their own, without the help of chest tubes. Every morning Lily has a chest x-ray, and every day so far this week, her x-ray has looked improved. Yesterday, they even removed her oxygen! Lily does well without the oxygen while she is sitting in bed, but when physical therapy came in she became very blue and her oxygen level dropped into the 60's when she stood up or walked a few steps. This could be due to the fact that she only has one functioning lung, or perhaps that she just needs more time to recover.
Yesterday, the nurse practitioner actually said the "H" word to me...HOME! I burst into tears. The current goals are to get Lily's Lovenox injections (anti-clotting medicine) to a therapeutic level, get Lily to eat (she has not eaten anything but ice chips in over 3 weeks), wean her completely off the methadone, watch her lungs for fluid accumulation, and monitor her electrolytes and sodium which have been a major issue this past week.
THANK YOU prayer warriors from the bottom of our hearts! We are in the HOME stretch now...please continue to pray our Lily Grace home. Our family is desperate to be back together again!!!
You, my friends,...
have had a front row seat to a MIRACLE!
Now to Him who is able to do immeasurably more than all we ask or imagine,
according to His power that is at work within us,
to Him be glory in the church and in Christ Jesus throughout all generations,
for ever and ever! Amen.
Ephesians 3: 20-21