Recovery

Week two post-op came, and Marin was finally strong enough to be weaned from ECMO.  I later learned that while a person is on ECMO, the body has no pulses because the machine creates a continuous flow rather than blood being pumped by the heart.  Marin had no pulse for eight days.  How was she still alive?  ECMO is also VERY high-risk for a number or reasons, and is only used in worst-case scenarios.  It can damage the lungs, blood can clot in the ECMO cannulas, and she had a significant chance of contracting an infection.  By God's grace, none of these situations happened with Marin.  It was so nice having that huge machine out of her room, knowing that although she was still very sick, her body was learning to do things on its own again.  The machine was kept right outside our door against the wall, and I was always sad when I saw that it was being used, that another family had to see their baby on it. 
Marin's numbers were all over the place...regulating her required constant monitoring and numerous medications.  Some days she would be under a warm blanket...other days we walked in to find a device blowing air on her because she had a fever and needed to be cooled down. 
Life outside the hospital had changed...we had moved from the hotel to a home, provided with free housing through a program called Hospitality Homes.  We stayed in a four-story mansion that dated back to the early 1900's with a grumpy yet generous old widower named Paul Polishuk.  We were there for over two months, and he generously gave us complete access to his home, including the kitchen and laundry room.  Having a place to call "home" made the stresses of our daily lives seem a little easier.  Each night away from the hospital, an internal alarm would wake me around 3 am, and I would call Marin's nurse to get a quick report.  It was always a game of input and output for her...She needed to gid rid of all of the medicines and IV fluids being pumped into her, and her body had a hard time doing this. 
After fourteen days of literally watching our daughter's heart beat under a thin sheath placed across the hole in her chest, she was finally able to have her chest closed.  This was a huge step forward for her, and at that point we all had more faith that she would pull through.  It was only after this took place that she was slowly weaned from her paralytic medications and able to open her eyes for the first time in weeks.  Those first glances at her outside world must have been so scary for her, and we made sure we were there.  Her drug-heavy eyes looked in different directions and she couldnt seem to focus.  We were told this was normal, that since she had been on so many heavy drugs for so long that her body was adjusting.  
Several days passed, and slowly, lines and tubes were removed.  Each day we would come in to find something else missing and a few small stitches in its place.  She began to look like a baby again and less like a medical catastrophe. 
We were allowed to hold her that third week, and although overjoyed, I quickly saw that it was very uncomfortable for her with the tube down her throat.  She would gag and try to cry, but no sound came out.  It was heartbreaking to know she was hurting, and I wanted nothing more than to comfort her.  We decided to avoid holding her again until she could breathe on her own.  To entertain her, Jacob and I bought her a mobile, and she would stare at it as it spun.  She followed it with her eyes and seemed to take comfort in it being there. 
At one month into our recovery, and after much waffling over the decision whether or not she was ready to breathe on her own, Marin decided to extubate herself.  She got so mad at one of the technicians doing her ultrasound that she cried and cried until the ventilation tube popped right out of her mouth.  The entire team of doctors and nurses rushed in, ready to reintubate her, but Marin looked so happy and was breathing so well on her own that this wasn't necessary.  She was put on oxygen and was doing great.  I still believe this was her way of letting them know she was ready to breathe on her own. 
She had slowly began to get breast milk through a tube that went down her nose and into her stomach, and the elephant-like skin on her once-chubby legs began to fill out again.  We attempted daily bottle and breastfeeding, but she refused, and would cough and gag when she did drink.  I continued to pump breastmilk into small containers 4-5 times a day, and often fell asleep in the pumping room.  Jacob would call and wonder where I went, and he could always find me laid back in the recliner of the secluded pumping room, enjoying the quiet time to myself. 
After being extubated and having her chest tubes and temporary pacing wires removed, Marin's heart rhythm began to fluctuate.  She would go from 100 beats per minute down to 50, then back up again.  This temporarily seemed to get better with doses of electrolytes, but it would always return to an unstable rhythm.  The decision was made to put in a permanent pacemaker to stabilize her heart rhythm, so Marin went to the OR again to have the leads placed on her heart and the pacemaker in her abdomen.  To us, this was a slap in the face...we had only had her back in our arms for a few days, then another surgery.  We feared the worst, because this was all we had known. 
Thankfully, she flew through the operation with flying colors, and was back in our arms by that evening.  We were so grateful. 
Marin was moved out of the Cardiac ICU after spending almost forty days there.  We were moved to a larger room on the stepdown unit, and we had a roommate.  After another week of regulating medications and more attempts at nursing and bottle feeding, Dr. Breitbart asked what we thought about going home to finish recovery at Our Lady of the Lake in Baton Rouge.  We were thrilled, and immediately accepted. 
The next day, Jacob returned home, and we prepared to fly out the following morning on a private jet to Baton Rouge.  Marin wasn't considered to be stable enough to fly commercially, so a private flight was set up that would include a nurse and respiratory therapist.  The cost for the one-way flight was $30,000, and once again our insurance came through for us.  We packed all of the things we'd accumulated since ariving in Boston, and signed all of the necessary paperwork.  We were ready to go HOME!!!
As our luck would have it, a huge snow storm came in the following morning, and after getting into the ambulance headed to the airport, we got stuck in about 3 feet of snow, and had to return to the hospital for the night. 
The next morning's attempt was much more successful, and we arrived at the airport.  As I stood outside on the tarmac waiting to board the plane, I began crying.  This was the end of our trip to Boston.  We had almost lost her several times, but we didn't.  I owed my life, and hers, to this city, those doctors, that hospital.  She was our miracle, and anyone that had been through this experience with us knew that to be true.  Thank God for Boston.