When I was a teen, I remember watching a movie called “Losing Isaiah”. It was about a crack addicted mother who left her baby in a dumpster while high. Unknown to the mother, the baby is found and rescued, but the devastated woman is left to desperately pull her life together. Years later she has gone through rehab, holds a steady job, and she finds out that her baby didn’t die, but is actually alive! After losing her child, she ends up receiving him back after all those years. The deeply touching film made me fall in love with the name Isaiah. The name holds hope and promise. It holds second chances and forgiveness. In Hebrew it literally means “The Salvation of the Lord”. To me, it simply means “God’s Second chance”.
For that is what Isaiah was to me.
I believed in God as a teen, yet I was stuck. I prayed desperately for a way out of the destructive life I was living, yet I felt powerless to do anything. It had all started with one bad choice, which led to another, which led to another. And suddenly my life that had once held so much promise was stuck in an endless downwards spiral. I didn’t know how to stop it. I desperately wanted a way out of the endless parties, the destructive relationships, the drinking, the cutting, the eating problems and depression. Just a couple years earlier, I had been an honour roll student with dreams of becoming a doctor. Now, that dream was dying before my eyes.
At the beginning of grade 12 everything changed: I found out I was pregnant. For many it would’ve been a time of great crisis, but not for me…I finally felt hope. It was as if God was saying, “Here Heather, I’m giving you the most precious gift you don’t deserve: A child. Now you will finally be willing to change because this child will mean everything to you.”
And he did. Isaiah’s existence changed everything! Every decision I made in the next nine months was for him and because of him. Isaiah changed me forever. When my perfect son was born, I named him Isaiah. My second chance.
He was a complete joy and the sweetest, easiest baby ever! He smiled around three or four weeks and just wouldn’t stop. He slept through the night by only two months old. Like I said, PERFECT baby. He was so happy! I was so happy.
Isaiah at two months old
But then, only two and a half months into our lives together, something awful happened that shattered our perfect little world: My sweet Isaiah got sick.
It started slowly enough, one day he just began to throw up after every feed. He always seemed hungry, as if he wasn’t getting full. The scary cycle would repeat itself: nurse, throw up, nurse, throw up, nurse, throw up, until he would finally get too exhausted to nurse and give up. Now, the first few days I just shrugged it off…but then he stopped smiling…and I panicked. I brought him to the doctors, who rolled their eyes at me and explained to this nervous teenage mom that spitting up was normal. When I protested, they assured me that he was fine and that I could always come back in if Isaiah got worse. And he did. So just like they suggested, I went to the doctors again, only to get sent home just as before. This went on for three full weeks. He began to wake three to four times a night completely soaked and I had no clue what was happening. Later I found out that it was his diarrhea, not urine or vomit that I was cleaning up…it was so runny, no one could tell the difference. One day, Isaiah became lethargic and was unable to lift his head any longer. I went to the emergency room and this time, I asked the doctor to please, PLEASE, at least take some blood work. When the results were back, the doctor came and explained that Isaiah’s Albumin levels were extremely low and that he was very sick (ummmm, DUH!).
The main protein which one cannot afford to lose in their bodies is called Albumin. Albumin normally is produced by one’s liver and circulates in the bloodstream acting as a carrier for biochemicals that require transport but cannot actually dissolve in blood. Albumin is also is responsible for keeping water in our bloodstream. When water cannot be held within the veins, it leaks out which causes swelling. The intestine is actually leaking nutrients out instead of absorbing them and the result is a nutritional crisis! This was exactly what we were seeing in Isaiah, as he looked chubby and healthy, but he was really just swollen. We were sent home and told to go to the Children’s Hospital the first thing the next morning.
I couldn’t sleep that night. I had never been more afraid in my entire life! The next day we got up early to go to the hospital. After a long day of tests and questions, Isaiah was put on IV fluids and admitted into the hospital, we still had no answers. Each day he just got worse.
Our first day at the hospital, after just being admitted into Children’s.
The doctors decided to put him on “bowel rest”, really just another term for fasting. The doctors were hoping that by allowing Isaiah’s digestive system to rest for a couple of days the diarrhea would slow down and the swelling in his intestines would decrease. I was no longer allowed to nurse my son and I sat by helplessly as he screamed in pain and hunger. The discomfort of not be allowed to breastfeed anymore was painful, but watching my sick boy cry for me to nurse him and refusing to give him what he wanted was almost more than my heart could bear. Also, since he was only getting electrolytes and fluids from his IV, they had to draw more blood from his tiny veins every 2-3 hours to test his levels. This was complete torture.
I wished with all my heart that I could take his place, that he could go home with my husband and I could suffer for him.
I only slept about 2-3 hours a night for the next few days. Isaiah screamed most of the time and when he slept, the nurses would be coming in and out of the room. The few times that we were left alone I would lie down, only to suddenly be interrupted by another doctor coming to take a look at him or take more blood work.
Isaiah’s first week in the hospital
Finally, after three days, I was allowed to feed him again. Only I was to feed him Nutramigen (A special formula for baby’s allergic to cows milk). I pumped for the next four months so I could resume nursing when he got better, but little did I know that it was all for nothing, as I never breastfed him again.
The doctors seemed incredibly frustrated with Isaiah’s case. He went through test after test, and they could just not figure out what was happening. They slowly ruled out different theories: lactose intolerance, allergy to cow’s milk, liver failure, and on and on.
Isaiah drinking a bottle of Nutramigen formula
At the end of the first week, Isaiah’s veins were so fragile that they would collapse when an IV was put in and he would scream in pain as the burning fluids would pour into the tissue in his arm instead. I clearly remember the horror of the first night this happened. He screamed for 8 hours straight, until he lost his voice. He could not cry but could only make a scratchy, pitiful sound for the next few days.
This was the lowest night of my life, I just lay awake and exhasted beside Isaiah’s bed and cried with him. I believe that night I met an angel. Maybe it was really just a doctor, I’m not really sure. I can’t claim anything supernatural about her, but I still remember her clearly. It was about 4 or 5 in the morning and I was trying in vain to comfort little Isaiah, when a smaller Asian woman came into my room introducing herself as Dr. Whosit(spelling?). She gently took Isaiah from me and he quieted instantly. She told me to lie down and as she rocked him, she compassionately talked to me. She softly spoke to me about many years ago rocking her own sick baby. She told me that she understood how I felt and she told me of the pain she endured while her son died in her arms. That’s the last thing I remember as I drifted to sleep. When I woke up, Isaiah was peacefully asleep in his crib and the doctor was gone. I asked around about her and no one knew who I was talking about. The nursing staff simply said that she must usually work on a different floor. I’ve since tried to look her up and have been unable to find her. Only ten years later, when I was telling my children about her did I catch on to her name “Whosit” or “Who is it?” This is forever burnt in my memory as one of the most tender and compassionate experiences of my life.
The next day, the doctors could no longer find any veins that would hold an IV and Isaiah’s electrolyte levels dipped dangerously low. He was brought to intensive care and a PICC line was surgically inserted into his leg. This is a permanent and more reliable line that goes into a larger vein, where the blood flows quickly. After this surgery he was once again able to receive fluids from intravenous. Isaiah was kept in a special room by the nursing station where he could be monitored extra closely.
Isaiah’s PICC line
Isaiah being closely monitored at the nursing station.
We were blessed with many visitors during this time. Family came by bringing food, money and gifts. Some people brought blankets, wet wipes and toys for Isaiah. Friends came to pray and share scripture. Some people sent encouraging emails. The support was overwhelming! I will never be able to fully thank all of those who were there for us during our hospital stay.
Three weeks passed and I still had not left the hospital. Ryan resumed working since we desperately needed the money, but I quit my job so that I could stay by Isaiah’s side. Ryan and I were still newly wed, we had said our vows only six short months before, but now it seemed so long ago. One night, as I lay beside Isaiah’s crib, I asked God if he could please make it possible for me to stay in a nearby hotel with Ryan for just one night. I needed sleep, a break from the constant up and downs of hospital life and I needed to just be with Ryan. The next morning I would’ve probably forgotten all about it if it hadn’t been for an email we received from a very dear woman. She wrote that as she was lying down in her bed praying for us the night before, a thought had popped into her head and she was wondering if she could pay for a night in a hotel for me and Ryan. I wept. These were the moments that convinced me without a doubt that God was real. This wasn’t just some strange coincidence. God had heard my prayers and was not only providing for my needs, but blessing me by answering my specific request.
Soon after this, the doctors diagnosed Isaiah with Intestinal Lymphangiectasia, a rare disorder in which the lymph vessels supplying the lining of the small intestine are blocked. This is why the protein was being lost from his body. People with IL have problems holding onto fluid in their blood system and develop swelling. Loss of white blood cells and loss of antibodies also meant that Isaiah was unable to fight infections. Symptoms can be helped by eating a low-fat, high-protein diet and taking supplements of vitamins, and medium-chain fats, which are absorbed directly into the blood. This disease is incredibly rare. At the time we were told that only 1 in about 200,000 people have it. I was so relieved to hear that they finally knew what was going on, but crushed after I was informed that there was no cure. The only thing we could do was to put Isaiah on yet another new formula called Tolerex, and continue to give Isaiah albumin injections and IVIG as needed. Tolerex was shipped into the province especially for us, since only one other person in Manitoba had IL at the time. It costed us a whopping $600 a month, and for two teenagers barely scrapping by on a $24,000 a year salary, this seemed completely impossible.
Isaiah’s swelling was so bad some days that he could barely open his eyes.
I thought that finally having the diagnosis would help improve Isaiah’s health, and the formula did help a bit. However, three days before Christmas he got an infection in his PICC line. The line had to be removed, much to our disappointment. Soon after, a second PICC line was put in and also got infected within days, this too had to be removed. As soon as his infection improved, we were sent home, but Isaiah’s symptoms still weren’t much better so as eager as I was to live back in my own home, I felt incredibly uneasy about this decision.
We were only home for a couple of weeks before Isaiah was sent back to the hospital, worse than ever before. The doctors agreed that his situation was bad enough that they had to put a central line in. They also did a scope during this operation, and he was put under for a few hours while I waited nervously in the recovery room.
It was during this first week of being back at the hospital that I found out that I was pregnant with our second child. I wish I could remember more about the next few months, honestly I feel that I sort of just shut down from all the stress. I stopped keeping track of the days or the visitors. I didn’t think of the baby on the way. I just existed there in the hospital, not really doing anything. I could only sit back and watch everything happen to a child I loved more than life itself. It was extremely unfair and unbearably painful. After months of standing up to doctors who I disagreed with, or telling the nurses when enough was enough, I just sort of gave in. I stopped defending him. I watched him go through the most sickening tests and though my heart screamed, my body stopped responding…I could no longer defend my boy. I felt helpless and useless.
Isaiah’s Final Hospital Stay
My boy was changing too. One day he just stopped eating, he hid behind his little blanket and whimpered when he was touched. I saw fear in his eyes when people came near him. He was acting like an abused child and that’s when I realized this could not go on any longer. I prayed, “God, I love this boy more than anything else in this world, but we can not go on like this. Please God, either heal him or take him home. I can’t watch him suffer any longer.” I wept the first time in many weeks that day, for I truly believed that Isaiah was going to die. He didn’t eat or drink for three days. He refused any drops of water. And each day I was more and more sure that it was he wasn’t going to be alive much longer…”Please God, please! Not my baby Isaiah.”
And suddenly, just like that, the nightmare was over. One day shortly after I prayed this, Isaiah drank his formula and cried for more when he was done. This was a total miracle. He began to put on weight. He started smiling again. Within a couple of weeks, he was off the lipids and the TPN (Total parenteral nutrition) which was given through IV the past months, keeping him alive. I just kept watching him recover, stunned and somewhat disbelieving. I kept expecting something really bad to happen…another illness, another infection, but nothing did. Finally, six full months after his first admission into the hospital, we were discharged. But the story doesn’t end there.
Isaiah at home with his central line.
We got home and the first week out of hospital, Isaiah’s central line got plugged and had to be removed. I was devastated as I didn’t want him to go through any more surgeries, and I was convinced that he would need it regularly as was expected with people who have IL.
The next thing that happened also seemed to be a big accident. A few weeks after being home, I was at my sister’s house visiting her and my nephew, when suddenly I noticed that her little boy had given his sippy cup full of chocolate milk to Isaiah and Isaiah had gone and downed the entire thing! This was a HUGE “no-no” and I was certain that this incident would send us right back to the hospital, but to my complete amazement, nothing happened! He didn’t throw it up, he didn’t have diarrhea, he was completely fine! This shocked the doctors as well at his next appointment. But it gave me courage to slip other foods to him which also contained long chain fat. Each time I did this I cautiously watched him, but his bowel movements became even better and he seemed to get even stronger. His doctors were VERY uneasy about me trying new foods on him, however, after they received the results from his blood work they were completely amazed. His albumin levels had returned to normal! I remember a group of doctors coming in and looking at him in awe, saying that in all their years of experience they had never seen anything like this! One doctor looked at me with tears in her eyes and said, “It’s a miracle! He’s healed!”
A few months later, Isaiah was eating everything any other boy his age could eat. He even enjoyed chocolate cake and gummy bears on his first birthday!!!
There’s so much more I could write about…the financial miracles we saw, the people we met in the hospital, everything we learnt…but I couldn’t possibly fit it in one post, it would fill an entire book!
This is just one story of many others I’ve lived through. But it is a foundational story in my life.
This is my story of growing up too soon.
This is a story of miracle upon miracle in my life.
This is a story of pain.
This is a story of when my faith in God became real.
This is my story of losing Isaiah, and getting him back again.
This is the story of Isaiah, my second chance, who also received a second chance.
A happy healthy, completely HEALED Isaiah at one year old.
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