We have had the most amazing experiences, truly truly amazing. Our little girl is very sick. Never in our wildest dreams would we imagine her being so close to death, especially at such a young age. Alayna has always been a spunky whirlwind of energy and fun! JOY! Best way to describe her. She has brought us so much joy! At Laynee's 3 year well visit (2 years ago), our wonderful pediatrician Dr Marie Trace detected a heart murmur. She sent us to the pediatric cardiologist who diagnosed her with minor-moderate mitral valve regurgitation. He said it may or may not worsen, and could possibly never slow her down. We visited routinely for tests and followed up every 6 months. As further visits showed worsening of the leak, it became apparent surgery would be needed to correct the leak. We were told by Dr. Del McOmber (another of our all-time-favorite-doctors-in-the-entire-world!) to plan and prepare for her to have open heart surgery someday (possibly soon, possibly lots of years down the road). Well, soon won the battle! Over the past 6 weeks Laynee has gone downhill fast. Lots of doctors have been left scratching their heads, unsure as to WHY she declined so rapidly. Our family had been building a new home and we were busy, busy, busy with lots of life's happenings! As Laynee started to get sicker and sicker, the "mommy instinct" (more appropriately called the Holy Ghost) strongly prompted an unscheduled appointment with the pediatric cardiologist. Dr. McOmber informed us of the severity of her condition and started immediate (as immediate as possible at that time) preparations for surgery to repair her valve. Usually congestive heart failure is a somewhat slow process. With our little lady there is no such thing as a slow process. A week after our visit with the cardiologist she was completely lethargic, pale, had no appetite and was too weak to do much of anything. We took her to the pediatrician who sent us immediately to the children's hospital in an ambulance. At the hospital she was given a "tune up" and we got to go home to our beautiful new house, yay! She was ok for a day, then she started throwing up and the downward spiral started again. We returned to the hospital on memorial day (the one memorial day I don't want to remember!) We were admitted to the PICU where we prepared for surgery. On Friday, May 31st the doctors performed a successful mitral valve repair. Everything went smoothly and we were ready for the return of our happy, healthy Alayna Jo. But when the surgery was complete and the doctors removed her from the heart and lung bypass machine, her blood pressure dropped and it became evident her heart was not strong enough to sustain her life. She was put on an
Extracorporeal membrane oxygenation
machine (ECMO) and we were told her heart needed extra rest and hopefully she'd be strong enough to come off the machine soon. Again the doctors were left scratching their heads asking why. Since her mitral valve seemed to be almost perfectly repaired, why was her left ventricle too weak to pump properly? When would it figure things out and start functioning? Would it ever recover fully? On sunday morning another very scary worry was made manifest...Why is she not waking up from the general anesthesia? Has her brain been damaged? Will she ever wake up again? As we wondered if we'd ever have the chance to hold our healthy, smiling child again, we were comforted with an indescribable peace. "Peace I leave with you, my peace I give unto you...let not your heart be troubled, neither let it be afraid...Peace be unto thy soul, thine afflictions shall be but a small moment...I did cry unto Him and I did find peace unto my soul." As the peace of God filled our hearts, we knew no matter what happened, our little girl would be ok. The comforting words from the scriptures kept us from despairing and we prayed the Lord's will be done. We later learned that at the very moment we felt of the vital outpouring of peace, warmth and light during what may otherwise have been filled with an awful darkness, our Elder's quorum (a group of about 25 men from our church with whom Justin leads as their president) were kneeling in prayer on our behalf. A CT scan was taken and the results came back completely normal. Our Laynee's brain function is perfect, no neurological damage at all! Praise the Lord! As the days passed and there were only "slight improvements" the doctors began to discuss a backup plan. The ECMO machine sustains life, but only short term. The side effects for long term use can be devastating. Alayna's heart would need to have assistance for a more extended period of time to give her left ventricle a rest. Hopefully in time her heart would regain the strength to function on it's own. We were informed the best place for Laynee would be St. Louis and preparations began to transfer us to the
St. Louis Children's Hospital Cardiac Intensive Care Unit. Saturday, June 8th was the big transport day. Alayna was switched from Kosair's ECMO machine to St Louis' small, portable ECMO. She was taken by ambulance to Bowman field airport and loaded onto a small private jet used only for St Lou Children's hosp. We drove as fast as we could and arrived at the hospital around the same time as the transport team. As we met with numerous doctors, heart surgeons, cardiologists, CICU attendings, they were all very informative and very realistic about the difficult road ahead for Alayna. The plan was laid out clearly. Laynee would be scheduled for surgery on Monday afternoon. During surgery she'd be placed on a VAD,
Ventricular assist device . The VAD is used as a bridge to heart transplant. There have been kids who had a VAD and were able to recover fully and be taken off the VAD with their own rehabilitated heart. We asked the heart surgeon how many. He was honest and straight forward. One child has recovered without transplant since the CICU opened 7 years ago. It was a little girl, 18 months old from Louisville Kentucky. She was taken off the VAD this past April. Dr. Boston (the heart surgeon) told us about a study that listed 6 successful VAD recoveries (with the kiddos own heart rehabilitating) out of 204 (who ended up needing a transplant). Here's the great news, Alayna is a fighter. She has an extremely healthy mind and body. She can have a strong and healthy heart again someday too! Miracles are real. It's a miracle that ECMO's and LVAD's are available to sustain life when the recipient would otherwise not survive. It's a miracle that St Louis Children's hospital has one of the most renowned pediatric transplant centers on earth, and that Patricia McVey Whiting (and family) and her adult daughter Melinda Whiting Higgins (and her family) live less than an hour from the children's hospital. It's a miracle that Justin has the ability to take time off work (without notice) and feel confidence in his business partner's ability to run their dental practice. It's a miracle that through this entire experience we have been blessed with the tender mercies of our loving Heavenly Father to feel peace and comfort no matter the outcome. Miracles happen and at this time we're praying for a huge miracle. We hope with all our hearts that our little Laynee's heart will heal completely. Today she has shown the most improvement so far. The doctors are turning down her ECMO machine a little more each hour. By tomorrow morning it will almost be turned down completely. If she continues to tolerate it well through the night and into tomorrow morning, they are planning to clamp the tubes carrying the blood to and from Alayna and the machine. Essentially they'll do a trial run to see if she can come off the machine. If she passes the test.......she will not need the VAD and she will keep her own heart. If she can not tolerate being off the ECMO, she'll go on to have surgery tomorrow afternoon to be placed on the VAD and she'll most likely have a heart transplant. We were informed today that the estimated waiting period for a donor heart (for a kiddo her size and age) would be 150 days. We're praying, with ALL OUR HEARTS, for Alayna's heart to heal TONIGHT. We believe, with ALL OUR HEARTS that the Lord can and will perform miracles, in his own due time. His time is not always our time and His ways are not always our ways. He is filled with love for His children and no matter what happens, if we turn to Him, all things will be for our good. We trust in Him and we are eternally grateful for His Spirit that has given us so much peace at this time in our lives. We'll never be able to express the gratitude we have for all the love and prayers on our behalf. It has sustained us. We know, without a doubt that our little Laynee is in the Lord's hands.
