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Challenge: NICU Parenting

Hidden Miracles

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My husband Andy and I found out we were pregnant with our third child in August 2016. In November, we went in for his 20 week ultra-sound. We found out our baby would be a boy.

A few days later on November 22, 2016, I got a phone call from an expert doctor and they told me they saw some problems with our son's kidneys and wanted to take another ultrasound. That same day they brought us into the ultrasound room where we met a genetic expert, a prenatal expert doctor and an ultrasound expert. They began taking pictures and examining our baby. We learned our baby had a cystic kidney, meaning his left kidney did not form and instead was cysts and fluid. Also his left arm was completely absent, his heart was rotated 90 degrees to the left and possibly had other problems but they did not have the technology to do a more in depth investigation. The doctors explained when babies are found with complex issues like this, they can often miscarry, or have severe special needs. The ultrasound technician said in 30 years of doing this he had maybe seen 1 other baby missing a limb.

Since these anomalies were so rare, they did not know what to expect with our baby and we were told to expect more problems and issues. We were asked about the possibility of terminating the pregnancy, but we said no. We wanted to love him no matter what.

We left the doctor shocked, confused, and scared. However my husband told me that we would make him successful no matter what, whatever that meant for him. If it meant him simply surviving day to day, or living a joyful, long and prosperous life. We began to pray for miracles, we prayed his arm would miraculously form, we prayed for health and wisdom. Most of all we prayed that God would be honored through our baby. We were determined to seek the positives and be optimistic no matter what we faced, because God was with us.

Over the next few months, we had numerous exams and appointments for our baby. Usually one or two per week. We learned that his intestines had not formed properly and there was a blockage in his intestines, so his body could not pass amniotic fluid and he began to produce excessive amounts of it, making the last weeks of the pregnancy extremely uncomfortable. At one point 2 and a half liters of fluid were drained from me, and within a couple weeks the baby had replaced the fluid again.

We continued to pray for miracles for our baby and we remained faithful that God was in control. We considered several baby names for our son. We decided he would need to be a warrior and would need to fight for every day of his life and we knew he was a fighter. So we named him Joshua, after the warrior in the old testament. We settled on Toby for his middle name, because it meant "God is good," so everybody that met him would be reminded that no matter what, God is good.

March 23, I started to get strong contractions. We called the hospital and told them we were coming. It was about 4:15 pm and we were going to have the baby at Rocky Mountain Hospital for Children, in the heart of downtown Denver. Our house is in suburban Littleton, which was about 45 minutes from the hospital, without rush hour traffic. Because of Joshua's issues we knew his birth would be dramatic.

As we began our drive I began to get bone rattling, toe curling contractions. Of course every road, highway and side street was congested with traffic for rush hour. My husband began taking drastic measures like driving on the shoulder and weaving through traffic in our minivan all while using the maps app to find points of traffic congestion and the best routes. I began screaming "he is coming," multiple times because I felt pressure. About another 10 minutes of white knuckle driving through the streets of downtown Denver and we made to the hospital at about 5:45.

The nurses began to calmly examine me. I began to have a contraction, and the nurse said she could feel the babies head, and surprisingly exclaimed "oh your in labor labor!" Moments later our delivery room was flooded with 15 doctors and nurses. A few mighty pushes later Joshua came out at 6:21! Our miracle had arrived, but we were not out of the woods yet.

They set Joshua on me so they could cut the cord and then whisked him to the little table under a heat lamp. It was apparent to my husband that Joshua was not breathing, he had facial expressions and he was trying to cry but there was no air. He was as blue as a blueberry, especially his face. Doctors and nurses calmly began working on him. They intubated him and a ventilator began breathing for Joshua and his heart rate was found and brought to a normal level after a couple minutes passed. He turned to me and said "he is breathing now," with a sigh of relief. I replied with surprise saying "he wasn't breathing?"

As the crowd began to clean up the mess, and stabilize the delivery room. Joshua was transported to the NICU in another wing of the hospital. For the first few hours, doctors examined Joshua and they told us the ventilator was doing all of the breathing for him and there was lots of debris in his lungs. They did an exam of his heart and found two holes in his heart, one with significant size and another was small and benign. Generally Joshua's outlook was positive and we were excited for what was to come. We celebrated the miracle of his birth. Little did we know it was just the start.

Joshua began to get stronger and eventually the breathing tube was removed and he was functioning on his own! However Joshua struggled to swallow milk and bottle feed. Joshua's eye was not healing, in fact the swelling was getting bigger. After about a week, an eye doctor examined Joshua and found his right eye was missing and cystic, and his left eye had big hole in it, and he did not know if he would have any vision in it. An orthopedic specialist determined Joshua's right thumb (only thumb) was non functional and malformed, his middle and ring finger were not formed properly and would have limited function, and his elbow had anomalies that would need to be examined later. This was gut wrenching news but we would love our son no matter what he faced and we would work to keep him successful and let him be a platform of God's power.

After an agonizing 6 weeks in the NICU and coming to see Josh every day while also juggling two kids at home, the light at the end of the tunnel appeared. Surgery was scheduled to remove the cyst in his eye because it was getting bigger and causing pain and discomfort for Joshua. After that, they put a feeding tube into Joshua's stomach, so milk could be directly put into his stomach bypassing the feeding so Joshua could go home! Joshua successfully made it through surgery!

However the next day doctors began to express concern about Joshua's lungs. It seemed he was developing a mucus build up in his lungs and they were having a hard time cleaning them out and could not figure out why. The breathing tube from the surgery remained in him and Joshua became more reliant on the machine. Doctors discovered he had a super-bug infection in his lungs that was resistant to antibiotics.

As they brought Joshua back, the main doctor we had been with through the hospital stay was updating us and began crying saying "I don't know how to help him, and we are desperate for answers."

Later that night, Joshua had his most severe "episode" as his airway was blocked and they could not figure out why. They removed the ventilator and put in a new one, and turned up maximum pressure. By now a minute or so passed with no air. Joshua's heart rate dropped below 20 and a "code blue" alarm was sounded throughout the hospital. Over 20 doctors and nurses came to the room with crash carts and equipment. The doctor began doing CPR. Watching your baby getting CPR, while people are yelling for meds and tools, it was chaos, but we were so powerless to help. I have never felt adrenaline raging through me like that before. It felt like forever, but finally air was getting into his lungs at maximum pressure. It took another 20 minutes to get Joshua stable and under control. Later a Rabbi came and chatted with us. It was a welcome distraction, as we talked about the warrior Joshua, Moses, David and Solomon.

Joshua 1:9 was sort of our rally cry throughout this whole ordeal and a verse we still cling to. We "slept" in Joshua's room that night and he had four more episodes of blocked airway, not as severe as the earlier one, but still terrifying. The next day, they medically paralyzed and heavily sedated Joshua so he could not fight the ventilator and so hopefully they could fight the infection and figure out these episodes. We learned the heavy antibiotics Joshua was on was defeating the infection and superbug.

That night however, the doctor came in and gave us the most devastating news we ever got about Joshua. A CT scan showed Joshua had a severe congenital narrowing of his trachea. In fact at one point the airway is as narrow as the ball point of a ball point pen. The doctor explained this is an extremely rare occurrence. The doctor explained the surgery teams are analyzing everything and was not sure what options would be possible or if Joshua was stable enough for surgery. This was also the reason Joshua struggled to eat, he couldn't breathe! We were devastated, scared and afraid for Joshua.

Later, Joshua had another "episode" and as he was recovering, a new doctor sat down with us, and showed us and the whole team of nurses and respiratory therapists the CT photos and explained there is a surgery called a slide tracheoplasty where they widen the airway. The doctor spoke with such confidence and wisdom. In all our hopelessness, we had a glimmer of hope.

A ENT surgeon came and talked to us and explained he would be performing the surgery. The surgery had a significant degree of risk, as they would have to put Joshua's heart and lungs on bypass machines, and stop the functions, then crack open the chest from top to bottom to fix the trachea. We waited 5 more days with Joshua in the same condition until the surgery was preformed.

The surgery was a huge success and they were able to get a good repair and finally Joshua's outlook was positive and we could look forward to having him home! We got to watch Joshua recover and get stronger every single day. I also got to witness his infectious smile a couple times! A couple of weeks later, he was ready to come home! We were over the moon excited! Doctors and nurses were amazed by Joshua, and many told us they admired our faith and love for our son. Joshua made such a major impact on even the hospital staff. I couldn't wait to snuggle my baby at home and have my whole family together!

Two nights after coming home on June 11 2017, at about 2:15 am, I woke my husband up with a stern push to the back. I said "I don't think Joshua is breathing." I looked at him and he was not responsive. My husband began CPR, and I called 911. Police and fire were at our house in moments. They worked on him for 20 minutes and we knew he was gone. In the following weeks, and months we learned Joshua suffered from a severe cardiac arrhythmia.

I began to feel angry that I didn't get miracles, the miracles of Joshua being healed and of him living and being an inspiration to others. After some time though, I realized that Joshua was my miracle. He shouldn't have survived birth with that narrow trachea, it's a miracle he could breathe those six weeks before his surgery, let alone thrive. I got to hold my baby, to gaze upon his handsome face and take him home. I feel lucky to have experienced a miracle.

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