She is Small but Mighty, She is Fierce
The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.
Deuteronomy 31:8
Last Wednesday when Hayden turned 12 weeks old, she was admitted to Levine Children's Hospital for surgery to have a G-tube placed in her stomach and her omphalocele removed. Tim and I were hoping that this surgery would help get her the proper nutrition she needed and minimize her pain. But we realized last week just how fragile our little girl is, as what should have been a routine surgery has turned into our biggest fear.
Our day was not off to a great start when we arrived at Levine Children's Hospital to find that her room was not yet available and then arriving in her room to find no crib, bed, chair or feeding pump. The room was completely empty and nobody was ready for our arrival. That night before her surgery Hayden started spitting up and vomiting all of her feeds and became very irritable with a slight fever. After discontinuing her feeds, several lab orders were placed for bloodwork as well as to start an IV for fluids so she would not become dehydrated. I watched my fragile baby girl get poked 12 times in one day for blood work. It took 6 nurses to get an IV placed (as she is a hard stick) and later to find out that some of her blood work was "misplaced and lost" by one of the lab technicians. When the lab technician came to retrieve more bloodwork (that had already been done) I completely lost my patience. How could such a small fragile child be stuck with a needle with no pain medicine or numbing 12 times? Was that really necessary and why did my daughter have to suffer from someone's mistake? Finally after not being fed for 6 hours we started an IV. I thought nothing could be worse than this night but little did I know it was just the start of many in the hospital.
After a long night with little sleep we awoke to discuss with her Pediatric Surgeon what could possibly be causing her vomiting and discuss possible scenarios. After an upper GI X-ray we realized that she had a malrotation in her upper GI tract that could have been causing some of her reflux and vomiting. The upper GI x-ray also showed that Hayden had an enlarged liver and descended appendix that seemed to separate her large and small intestines. So what should have been routine turned into a discussion with her Pediatric Surgeon on what procedure we may have to proceed with for surgery as a G-tube was now off the table.
Hayden's surgery continued to get pushed back throughout the day with her continued complications as it was originally scheduled for Thursday at 11 am and she did not go into the operation room until 4:30 p.m. At the time she had not had any feeds since 8 pm the night before. Tim and I were both on edge as at that time we did not know what procedure would take place in the OR as it may change depending on what they saw once in surgery. Fortunately, he did not have to make an incision and open her up as her intestines seemed to function properly and showed no signs of being blocked or coiled. Hayden ended up having a GJ tube placed instead of a G-tube due to her severe reflux. A GJ tube is a feeding tube with two ports, where one is in her stomach and the other the small intestine. She also had her omphalocele removed with little to no trouble. Because she had been sick and they had a difficult time intubating her and starting
a Central IV line, she was sent to the Pediatric ICU.
Since we have arrived in the PICU it has been one obstacle after another. Hayden was extubated on Saturday and did remarkably well on the high flow oxygen until Sunday night. Hayden has these "episodes or fits" as I call it where she gets worked up and holds her breath causing her heart rate and sats or oxygen saturations to drop. After having episodes all day Tim and I finally went to sleep at the hospital around 2:00 a.m. At 4:30 a.m. we get a knock on the door down the hall from her room from the nurse saying you need to come quick your daughter is having trouble breathing. We ran into her room to find her room filled with nurses, residents, doctors, and almost the entire PICU floor. Her heart rate had dropped in the 30s and her sats dropped to 2. They were bagging her when we walked in or manually ventilating her with oxygen and the Attending Physician told us that she would have to intubated again. We watched for thirty minutes as our daughter was getting oxygen as we waited for the anesthesologists to arrive to intubate her. Due to her underdeveloped chin and jaw and very small airway she is very difficult to intubate so 3 anesthesologists came down to intubate. We watched from the window of her room as we saw our daughter fail to get intubated the first time and once again have her heart rate drop below 40 and sats plumment. I hope other parents never have to experience this seeing their child turn blue and lose all life in their limbs as they struggle to fight to stay alive. Although it was BY Far the worst moment of my life, we were fortunate enough to have the best Staff in the world there explaining to us what was happening and fighting to keep our daughter alive. Hayden was intubated successfully on the second try thanks to 3 anesthesologists and our amazing team of PICU nurses and Physicians. We have been so blessed with the level of care the PICU Staff has provided for our daughter and the compassion and patience they have had with us as parents.
As I write this today Hayden is still intubated but on lowered 30% oxygen at a rate of 12. With the help of breathing trials, we are striving to get her extubated and off oxygen. But since Sunday she has had multiple obstacles that continue to try to bring her down and push her back including pulmonary hypertension, a blood clot found in her right leg, a fever of 102.7, an inflamed central IV line (which was taken out along with her IV line in her foot and head), low hemoglobin and glucose levels, over 1.5 liters of fluid on her little body and bacterial rods found on her BAL culture from her lungs and breathing tube.
Hayden has spent 1 month of her 3 months of life in the hospital and still continues to fight in the Pediatric ICU for over a week now. It has been the hardest challenge to overcome yet, trying to understand why our precious little daughter is being put through so much pain? How much can a child endure? I know she is a fighter and she is fierce but how long should we expect her to fight? Everyday we continue to pray and hope that she will get better yet the next day a new obstacle presents itself that she has to overcome and it is so discouraging. I have yet to leave the hospital for a week now as it is impossible for me to leave Hayden's side. I pray every night that God eases her pain and if I could I would gladly take that pain from her.
Tim and I pray that she chooses to continue the fight but it is heartbreaking to see her in so much pain and having to fight this fight on her own. For us we are just two parents so unbelievably proud and blessed to experience 3 wonderful months so far with our little angel. Everyday she continues to amaze us and overwhelm us with love. She is small but mighty, she is fierce, she is our light, our love, the center of our world, and our little miracle. We are truly thankful for each and everyday she gives us and she continues to inspire us with her tenacity and strength. Thank you to all of our friends, family, supporters, believers, and prayer warriors that have helped uplift and encourage us through this journey. We appreciate your support, positive thoughts, and prayers and continue to ask for prayers and strength for us and the PICU Doctors and Team watching over Hayden as each day continues to be a battle and one that we pray we will win and overcome.
As we approach almost one month of Hayden being in the hospital it is very difficult not to feel discouraged. It is hard to fathom that 7 weeks of Hayden's 16 week old time spent on this Earth has been in the confines of Levine Children's Hospital. Tim and I have faced a whirlwind of emotions from sadness and despair to anger and discouragement to relief and hope. Life in the hospital has not been easy nor is it ever going to get any easier. Days are spent in the confines of Hayden's hospital room full of updates and visits from her therapists, specialists, and physicians while nights are filled with little sleep, lots of crying, and constant noise and alarms. Although we remain uplifted and positive it has always been challenging and continues to be the most challenging days throughout this entire journey. 
For me the hope is in knowing that we are surrounded by so much support, love, and hope from friends, family, churches, neighbors, and friends of friends that share our story. It is knowing that Hayden's story has already touched so many lives and continues to raise awareness for Trisomy 13. It is knowing that these trials that Tim and I are facing in our lives right now were never God's original intent. Our lives and Hayden's life was never intended to be full of discomfort, discouragement or any pain and suffering. So we must persist in prayer and continue to hope because that is all there is to do. 
