Complexities of Life

Looking back eight years ago, I had no idea how much my life was about to change. We had just been through three major surgeries with our young son. We had his feeding pump, bags, formula, syringes, medications, other supplies, I was pregnant, and about to find out I had cancer. The year could not get any worse could it? I was blessed to not have to have treatments. I could not have treatments because they would have ended pregnancy. The cancer was removed just before it reached and passed my eardrum. Huge blessing.

Our daughter was born looking perfect in October. However, within a few minutes the doctors knew something was not quite right. They were placing her in the NICU for observation and antibiotics because she was born at 33 weeks. What we did not know was that within a few minutes of birth she would start struggling to breath, Within a few hours, she would be on the ventilator and have a chest tube placed. Within 18 hours, she would be on the highest level of life support, have four chest tubes placed and the idea of EKMO was very likely. The paperwork signed and they were nearing prepping her.

When our son was in the NICU, I “thought” I know what it meant to have a baby in the care of the staff there. I would very quickly learn exactly what was meant when he was labeled “feeder/grower” within a few days of arriving. Once stabilized, he only had one IV, the purple light due to high jaundice counts, and a nasal feeding tube till he learned to eat.

On the other hand, when our daughter was in the NICU, I had never seen so many hooks, wires, tubes, and attachments on such a tiny baby. Yes, she was born at 33 weeks, but we took up 2 bays work of hooks ups for what seemed like forever. She received six to eight x-rays of her lungs a days (some days more), had two oxygen machines one for the oscillating ventilator and one for INO or nitric oxide, multiple rows of IV machines, Y-ports in her IV Y-ports. She had IV’s in her hands, feet, belly button and head at one point. In addition to her vent. she had a nasal g-tube to remove air and mucus, and other things I did not understand at that point.

For the first three weeks I was only allowed to touch specific parts of her body and at first for only small amounts at a time because it cause her to much stress. Later, I was taught how to massage her tiny body as the staff was worried the severe swelling would cause her skin to begin ripping open in areas. The fluids had to be moved around.

Our children were allowed in the NICU on three occasions despite the age restriction because the doctors feared that would be their last chance to see their sister. Sadly, parents of healthier children in the NICU did not understand this move and were angered that our children all eight and under were allowed inside during the RSV/Flu season. On the fourth occasion the children were brought to the NICU, they were all scared to see her and thought she was dying for sure. When they found out she was about to be released they were all thrilled beyond comprehension. Finally, after 6 ½ weeks in the NICU and 1 week at the Ronald McDonald House we were allowed to take her home. The kids were thrilled to make the two hour trip to get their sister and take her home.

Taking her home we were told to expect severe cognitive delays due her coding in the NICU a couple times, the excessive amounts of oxygen, some of the treatments, and they did not know how her lungs would do. We were told her lungs would be very iffy as she was leaving with 25% overall lung function. 10% one side and 15% on the other. Would her lungs grow and become healthy? Would her lungs stay the same? Would they get worse causing her to require a double lung transplant? They did not know… Would she even qualify for a transplant if she needed one? Only time would tell. To may questions, and no answers.

What did she come home with? Well let’s just say her equipment put Zach’s meager equipment to shame. Suddenly we had; oxygen, pulse-oximeter, apnea monitor, feeding pump, and her nebulizer, and ALL the supplies that came with each machine. In addition, she had syringes, a special bed wedge for her sleep on. She had to have her nose and mouth suctioned still and her whole list of meds. When we left the house with Zach, I needed only his feeding pump, backpack, formula, and a few spare items. Suddenly, we had developed a trauma level first aid kit that we had to keep on hand at all times when we left the house.

Nobody prepared me for the fact that I would be needing an ambu-bag, and other resuscitation needs should her apnea spells cause her to code again until after her 2^nd hospitalization the doctor asked me what her first aid kit looked like. We also were not prepared for the first public outing we had (going to church) and all her alarms alarmed at once and she almost required a 911 call while at the church.

This was short lived. Ten days home and we went back to the hospital for another 21 days. 21 long days. Her first day back in the hospital she aspirated and coded in front of the admittance staff. After an emergency Nissen Fundoplication, to help stop the severe reflux, we were sent home again. She continued this pattern her first several years. The same answers we were given, and they were ignored. Do not plan her upcoming birthday, because she will not live long enough for you to celebrate it. We planned those parties anyway.

To date she has easily lived 1/3 of her life in the hospital with all her hospital stays combined. She is completely feeding tube dependent, especially with her j-tube. Her lung function has improved to an amazing 60-75%. She has no cognitive damage. She is the happiest and most positive child I know. She has endured multiple major operations. In addition to, well over 30 additional procedures and treatments in the OR under anesthesia. Yet even with this she still goes into each one happy and goofy, and come out with a smile.

What has this child taught? She has taught that regardless of the complexities in life, it is important to look for the blessings surrounding us. There is always someone: needing cheering, a friend, to feel important, has trials harder than she has, who works hard to be an amazing nurse or doctor, and sometimes, just a smile, nor or giggle is all they need to smile, giggle, or change the outlook of their day.

We have grown closer as a family because of the need to learn the individual needs. We have learned who our friends are and who we know we can count on. We discovered which teachers and nurses at school are simply amazing beyond all expectations. They treated our daughter with the utmost care and like she was one of their own children.

Beginnings of Life

Life has a strange way of preparing parents for future events. Fifteen years ago, our second child, Jade was born and she just came home. Little did we know she was about to take us on a journey of our lifetime. For two years, she struggled to sit, crawl, walk, eat, respond, and thrive in general. Just before her third birthday, our world was ripped out from under our feet as we were given the news she was profoundly autistic. The list of “will never’s” was the longest list I thought I would ever hear. Yet, this list was just what I needed to fight for her. However, this fight did not start over night.

Dreams. Dreams that every parent has for a child can be shattered like a mirror dropped to the floor in a split second. All it takes is a doctor saying, “your child will never…” Imagine this as a new parent. You know your child can be a future doctor, scientist, or even an amazing leader, until, a doctor says, “your child will never… (insert list)” All hopes and dreams are shattered and the parents are left devastated without support to pick up the pieces and continue being the parent to this being they thought was their child.

In time, we learned to pick up the broken puzzle pieces and help figure out what our daughter needed. In time, we found support. In time, we developed friends with other families with other children with autism, and learned how to fight for our child. In time, we became her advocate, and learned along with her what she needed to know to progress. In time, she lost her profound autism label and became high functioning. I know this does not happen to all children with autism, but in time, we found a new child inside our daughter and learned to help her shine.

Life continued fairly smoothly until nine years ago. We had developed a rhythm for our family and we had things figured out. Or so I thought.

In 2004 we had four children and we were expecting our fifth child. We knew there were possibly going to be issues because I kept going into preterm labor. Zach stormed into our life and showed us how far from having a developed rhythm we were and threw a monkey wrench in everything. He jumped into this world at 33 weeks and had very under developed lungs. After a couple weeks he came home and I thought I understood the NICU.

Within a couple weeks he was back in the hospital and we discovered he was born with a congenital heart defect CHD. He had a VSD and it looked like he would require open-heart surgery. Turned out this stinker would require eight surgeries by the time he was four, but none on his heart. He was blessed with his VSD closing on its own. He did however require a feeding tube. This was left in place until just before his 4^th birthday.

Our main goal… IF we were going to have any more children, ALL his medical equipment would be gone first. Yeah, good goal but God had other plans for us. Our sixth child snuck in on us.

Eight years ago, five children in the house, to much medical equipment, or so was the thought and the sixth on the way, nerves were raw. Everything looked perfect until May 2005 when I was diagnosed with cancer and required surgery in June to remove the tumor. Still, all ultrasounds showed no problems. We were pronounced to have a perfect baby. Possibly a girl.

October 15^th, our world would once again change forever.

Our littlest princess was born and at first, all seemed fine. Then suddenly, something was not right. She too was 33 weeks, and taken to the NICU for observation and antibiotics “just to be safe.” Within a few minutes, she was struggling to breath. Within a few hours, she was on life support. Within 18 hours of birth, our littlest princess was in serious trouble, and the NICU struggled around the clock to offer her a chance to come home.

We were about to learn real meaning of the NICU life. We were about to learn what it meant to have medical equipment and supplies in the house. We were about to learn what it meant to get really close to the NICU and other hospital staff members. The hospital and Ronald McDonald House would become our home away from home.

We are starting off 2014 on a wonderful note. This is the first year that our Ellie-bug has NOT spent Thanksgiving, Christmas, or New Years in the hospital or the ER. She had her scheduled procedure to have her GJ tube changed between Thanksgiving and Christmas, and this was the best OR change she has ever had. So far we have had her healthiest school year since she entered preschool. She LOVES being homeschooled, but misses her friends at school yet, does not miss getting sick like she did last year.

We are starting this year with her being almost 8 1/2 and weighing 48lbs and she is 50" tall and is now wearing size 6-7 clothing. She started last year at 45lbs then dropped down to 42lbs, had her GJ tube placed. She went through 6 GJ tubes last year, changed formula, dropped down to 12 regular daily medications, she has learned how help make her formula, and help run her pump. She has also learned how to pull her back into a ponytail by herself.

Ellie has begun to learn her cursive and calligraphy letters. She loves calligraphy because Merida from Brave uses calligraphy. She loves drawing and painting with acrylic and watercolors. Her other favorite school subjects are math and science, and her reading is starting to take off. She also loves Minecraft and has become quite good with building houses and other buildings.

Ellie is our little miracle because she was not supposed to live to see her first birthday yet, has defied all odds. When she left the NICU she had minimal lung function and we had feeding, beeping, screaming, annoying machines at home to alert us is something was wrong. Fast forward 8 years 1/3 of her life has been spent in the hospital. Everywhere we go the staff gets to know her well enough the nurses know when she is sick, really sick, or in for observation.

We have blessed with an amazing child who goes out of her way to make others smile, make sure everyone has a friend, and is nearly always happy. We have never had nursing staff not want to help care for her. She always thinks of those around her before herself.

We are looking forward to a wonderful 2014 and hope it keeps up like this.