Wednesday, October 8, 2014

The Bonds Between Heroes...No Path is the Same but We Walk it Together- written by Heather Isham

Hey there, I’m Heather. Let me introduce you to my family & a part of my life. I married my husband in 2004, and while it is wonderful to walk thru life with your best friend, not all days have been roses and chocolates. We’ve gone thru valleys; we have stood at my dad’s funeral, we have grieved infertility, and the miscarriage of a precious life. Each thing has taught us about ourselves and each other. Our family grew on March 11, 2009 when we agreed to take a tiny baby girl in as our first foster kiddo. Her name is AnneMarie, but we mostly just call her Annie. Annie came to us at 4 months old weighing just 9 pounds. She looked sick, and was still very much like a newborn. When we got the call to take her, we were told she had a disorder called Chromosome 16p 11.2 Micro Deletion. Like you, we had no idea what that was, but we knew we wanted to love this girl. We fell hard and fast for her gentle nature and fighting spirit. In 2010 we were blessed to be able to legally call her ours when we finalized the adoption.  In 2013, we found out we were pregnant and welcomed a precious baby boy named Judah into the world. He is 11 months of boy, energy, getting-into-everything

Annie’s condition was foreign to us {and about everyone else we met}, and I didn’t know much about chromosomes. I figured missing such a tiny piece of a chromosome shouldn’t matter much…..I was wrong. Her genetic disorder is very rare. Annie’s disorder has manifested itself as: cognitive delays, developmental delays, severe foot deformity, cleft palette, hypothyroidism, sleep apnea, speech delays, choking/aspiration issues & had 2.5 years of feeding tubes, severe anxiety, low immune system, ear infections regularly, joint deformities (knees, etc.), overheating problems, seizures, heart concerns, etc. We keep busy with over 10 specialists & speech, occupational, physical, and horse therapy. Annie has had 9 surgeries, 4 ambulance rides, been treated in 8 different hospitals, spent about 5 months total of her life admitted, and had more doctor appointments in her first 5 years than many adults have had in their whole life.   
The day she earned her  nicknames.
Summer 2011 we were living in MI. Rick {my hubby} was in the midst of running summer camp at Youth Haven Ranch &I decided that I would take Annie to visit my mom in SC. If we left a week before Rick was done with summer, we could get in more time with my mom, who had recently been widowed. I had looked forward to the trip all summer.
A week before we were to leave, Annie choked. She was eating trail mix in her high chair when she started to struggle to breathe. I was just walking in from the store & heard my husband do the infant Heimlich on her. This was a bi-weekly event for us. She seemed ok but then I was in our room and could hear her struggling for air in the room next to us. Again Rick flipped her upside down and hit her pretty hard multiple times. It cleared and we breathed a little easier. A few days later we were at Lake Hurion with some family. After hours at the beach Annie got very fussy and seemed to have a fever. She fell asleep on me which was very unusual. That night she began coughing to the point of throwing up. We monitored her and gave her what we could. At almost three, many moms know there is not much you can do but ride out a “cold”. The day before we were to fly out, I took her to the pediatrician just to make sure she would be ok to fly. We were given the all clear, and she verified she thought she was recovering from a bug of some sort. She was doing pretty well, except for this nasty cough that seemed to linger.

The next day, Annie I flew to SC and met up with my mom. Annie did surprisingly well for the hours in the airport & plane. When we arrived, what would normally be an hour drive from the airport took over 3 hours due to a fatal car accident on the one bridge you had to take to get home. I can clearly remember the moment when the reality of this time in the car & severity of this hit me. We were in stop and go traffic that whole time. Annie was pretty fussy and I kept apologizing to my mom. We tried snacks and toys, but she was seeming restless. I chalked it up to a tired 2 year old who had been strapped into her seat all day. She was active when we got to my mom’s but still fussier than normal. The next morning my mom had Bible study so I took Annie to their community pool. I ended up leaving because she was so fussy. She loved water so this was unusual, but I again blamed it on the long day we had had the day before. That evening she had pink cheeks and would scream when she laid down. I thought she had an ear infection from the cold. I spent all night awake with her. She would whimper but lay on me if I sat up, but the second I picked her up to lay her down if she fell asleep, she would scream.
Saturday morning we decided to take her to Urgent Care. Due to us being out of state, they would not take her insurance. We were recommended to go to the E.D. We got there and she was a hyper kiddos running around the nearly empty waiting area. She entertained the desk staff and was happier than the days before. Her ears were fine, so they wanted to take an x-ray to check out her cough which was something you would expect coming from a grown man rather than a petite 2 year old. About 20 minutes later, the doctor came in to ask if her x-rays in the past had ever been abnormal. They had not, unless she had pneumonia. He said he had called a radiologist from 30 min away to come read it because as a small hospital they did not have one on hand on the weekend. I was oblivious to how bad things were until I went to go outside to call Rick and update him. The looks the nurses said that they clearly knew something I didn’t, but they looked like someone had just died. They were overly helpful in a quiet way and I decided to call my church prayer line. I told them something was going on and we needed prayer. After waiting a bit, the doctor came back in. He stated that Annie had free air floating around. Basically she had more air outside of her lungs than in them. They stated that if we had tapped on the breaks with much pressure, it could have completely crushed her lungs. {That’s when I had a flashback to two days before as we sat in 3+ hours of traffic. God’s hand was upon her.} They would not let us drive her, and prepped to transport her 2 hours away to a children’s hospital. When the paramedics arrived I overheard the gal ask what the transport was for. In a quiet voice the doctor told he that Annie had free air surrounding her heart. By the looks on both of their faces, I knew then that we were in trouble.
My mom headed home to get her house/pets taken care of and planned to meet us there. I rode on the stretcher while Annie laid on me. She could not be strapped in so they strapped me and I held her. I had a long time to think and talk with the paramedic. To this day, I am grateful for that woman’s compassion as I held this little life not having any idea what was going on. I asked her what caused this “free air” and she said usually it was from when someone aspirated. I had no idea what that word meant {or how much it would change our life from that point on!}. When someone aspirates, food “goes down the wrong tube” and ends up in the lung. The lung doesn’t know how to break down food and fights against the foreign body. I remembered then that Annie had choked about a week before. The paramedic advised me to mention that to the team that would be working on Annie at the hospital. She also gave me her number & asked me to keep her up to date on how she does.

We got settled in at Palmetto Health Children’s Hospital, and I was again realizing the gravity of the situation as doctor after doctor came in to meet us. I mentioned multiple times about Annie’s choking, but the doctors all agreed that Annie would be much sicker if she had aspirated more than a week before. In between Annie’s coughing fits, she was a VERY active little girl. All that night Annie coughed & cried. The next morning everyone agreed that pulmonology (Dr. Brown) should go in & have a look to see if they could see what’s causing the leak. The pulmonologist was very kind but also agreed that if Annie had aspirated over a week before we would be looking at a much sicker girl. He stated that he would almost “stake his career” that there was not a foreign body in there. We came up with a plan that he would put her under and put a stiff tube down her throat. This would allow a camera to check out the area. If he did find something, he would then call in a surgeon on call who would operate to remove it. If he didn’t find something we would have some idea what to rule out. I then asked him if I should have Rick come down- he was still anxiously waiting in MI to hear what was going on. The doctor said he would know more once he went in.

Annie before she went back for surgery.

We all knew the game plan. Rick was waiting in MI to know if he should come. My mom and I went thru pre-op with Annie and then sent her back with Dr. Brown.  About 20 minutes after they took Annie back, Dr. Brown came out and told me that there was a foreign body in there. He couldn’t tell what it was, but they were waiting for a surgeon to come in and operate. He would come get us as soon as they were done. I had just finished filling Rick in when Dr. Brown came around the corner. His face was white and he asked me to come with him. I quickly got up to follow him. He was brief & hurried. He told me that Annie’s airway & lungs began swelling as soon as they went in and she is not doing well. He stated, “No one wants you back there, but when I took Annie from you, I had no idea we may lose her. I have made enough people mad today, but I think you need to be able to be with her. We may be losing her.” I was taken into a room where cords and people were covering Annie. There were about 8 people working on her & I sat on a stool awkwardly pulled up in the middle of the room. I didn’t know what to do. Everything happened so fast. Annie was put on a ventilator because she was unable to breathe on her own. She then was put in a drug-induced coma to see if they could reduce the bleeding and swelling. Here I am, alone in a different state from my husband, sitting on a stool praying that my baby does not die in front of me.
I met the head of the ICU who would be handling Annie’s care & I immediately liked him. He was a grandfatherly type who came over and cracked a few jokes to give me a chance to wipe my tears are clear my head to hear what the next step was. Over the next weeks, he was a continued blessing to us. Rick & his mom drove thru the night to be there. It was incredibly hard having to prepare him for what he was going to see when he go to the hospital. Annie was unresponsive, and had many machines working to keep her alive. She had a nurse assigned just to her who was available in seconds. While Rick was mentally as prepared as he could be, it was a very hard thing to walk into her room and see her laying there looking lifeless.
We also were not supposed to touch her much or talk near her because it can cause people to try and pull out of a coma. We spent days sitting there talking quietly, napping, reading, or watching TV. After 5 days, the surgeon visited us and let us know that the next morning they would go back in. He let us know that this was not only risky, but quite possibly it would not be something that would be able to be done. His words were, “If you have people praying for her, have them be praying for me too.” We knew the risks were high and we tried to prepare our hearts for whatever was going to come. Surgery was at 7:00 and my mom’s pastor drove about 3 hours to be with us when the surgery started. My mom and mother-in-law came, they had gone to my mom’s due to the two person rule in the PICU. Within 20 minutes the surgeon came and got us. He let us know that they had gotten the object out.

After we all had spent over a week wondering what it was, we finally had answers. The third TINY piece of a peanut was what they found. She was affectionately called “peanut” by everyone from the Child Life team to the janitors who had heard her story. All the doctors called her peanut except for one. He called her “Goose”. So in the time we were there, she walked away with two nicknames that we use to this day.

Annie had to go thru swallowing therapy and physical therapy to recover from her time in the PICU. We were blessed by many chaplains, the Ronald McDonald House of SC, and our friends and families who prayed for us. It was the scariest event we had gone thru with her up to that point. However, thru it all we saw and felt God’s hand with us time and time again (I wish I had the time to write each miracle that happened during that stay!).
The day we were discharged at the Ronald McDonald House.

Annie’s life has taken us on a journey we never imagined for ourselves. I never imagined I would navigate the road of special needs, or be in meetings fighting for my daughters rights to education, or {yet again} be explaining her disorder to an Emergency Department team. There are days that I have had to be the kind of parent that I never wanted to be- a “hoverer”. We have ended up in the E.D. close to two dozen times after that for other aspirations. It’s been a tiring journey. Many days of it have been lonely. While most moms are having play dates, I go to yet another appointment (now hauling two kiddos). Lots of the toys in our house are leftover supplies she has been give: oxygen masks, stethoscopes {they’d give them to Annie when she’s been in isolation}, tiny lights they use to check mouths, gloves, etc. I could easily tell you which hospitals have had the most comfortable beds and whether I prefer pull out beds or slide down ones. I know how to pack a bag for a hospital stay with my eyes closed and know what items Annie likes to have to calm her.  It’s a world I never really knew existed before now, however it’s a world I now call home. It can be isolating very isolating and that’s honestly the hardest part. However, each time we go thru an emergency, day-to-day struggle, or routine appointment, I know serve a God who loves Annie more than I do. That my friends, is what gets me thru. I know He passionately defends the weak and it gives me strength to fight for her that day.

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