Miles' Story

I don't really know how to begin writing this, or what to say, but I want to write everything down before I forget. I guess I should start from the beginning with everything I remember. {Please note this will be long and detailed, I am writing this for me and for my family so that we will remember everything about sweet Miles, but you are welcome to read it}  Around Maylee's first birthday we started to think she needed a little brother.  We were all so busy at the time, Grandma and Grandpa Brown had just passed away, Kinley and Mason were in school, sweet Maylee was a busy little toddler, and we were very busy building our dream home.  We thought about it for a little while, and then suddenly at the end of September (the day after we moved into our new home) we found out we were pregnant.  I knew from the beginning that this was a boy.  He was due to arrive June 8th, and the timing with warm weather and school just getting out was going to be perfect.  On December 22nd I went in for a gender check ultrasound, and sure enough there he was, a perfect healthy little boy.  My kids were all so excited to be having a little brother, we shared the news with the rest of the family and friends on Christmas Day.  On January 26th I went in for my 20-week ultrasound.  We saw again that this little guy was no doubt a boy, with a strong healthy heart, all of his perfect little fingers and toes, everything we could expect in a healthy baby boy.  However, they did find what looked like one blocked/enlarged kidney.  As a mom, of course I worried about my little baby, but it didn't sound like a big deal.  The next day we went to see the perinatologist at the Hospital (we will call her Dr. F) for a more thorough diagnosis.  After looking at every part of him, she determined that he had a very rare tumor that looked to be attached to his right kidney.  At that point we were told that whatever was going to happen would happen, nothing could be done for him until he reached at least 24 weeks.  They didn't need to see us again until then since there was nothing they could do.  For the next 4 weeks we could do nothing but wait, then return to the specialists to see if this tumor had grown and what it was doing to him.  Those 4 weeks were some of the hardest weeks of my life, not knowing, waiting, and hoping he would be okay.  At that point we decided that he needed a name.  We knew his middle name would be Frank after his Grandpa Brown.  We like the name Miles.  Matt's Grandpa's name was Niles, and since all of our kids' names start with "M's", it was our "M" version of Niles.  We still debated over names in the coming months, but we always called him Miles.  When we went back to the perinatologist (Dr. F) at 24 weeks, we were reassured and filled with hope.  The tumor (determined to be a neoblastoma) was growing a little, but it was staying proportionate to his body, and his other organs were growing, developing, and functioning just fine.  They planned to just watch it and leave it alone after he was born since these tumors typically shrink and go away on their own.  They said I could fully expect to go full-term, although they would probably want to induce at around 38-39 weeks since we would want have it scheduled so we could have the neonatal surgery team there just in case, and deliver at the University Hospital, which was further away, but had the best care available if he needed anything.  They scheduled an MRI for 2 weeks later just to get some detailed still images of the tumor so that they could be sure exactly where it was attached, aside from that they would see me back in 4 weeks just to check on him again and go over the plan after the MRI confirmed everything we already knew.  We left that visit so relieved and full of hope for our little man.  After the weeks of waiting and not knowing we finally had answers. I went in for the MRI 2 weeks later, and can say that was one of the worst experiences of my life, hopefully I will never have to do that again.  I was strapped onto the table flat on my back (SO not comfortable at 26 weeks prego) for about an hour and a half while they took their images, some requiring me to hold my breath for periods of time, or breath nice and even while in a tiny tube 2 inches from my face with blaring sirens all around me.  They had to retake several of the images since our little guy was very busy and wiggly and some of the images were too blurry to use.  Glad that was over, I left and didn't expect to hear anything until my next visit 2 weeks later.  I was at home with the kids about 3 days later when I got the phone call.  Dr. F called to tell me that according to the MRI, our little man's tumor had grown aggressively over the last 2 weeks and was growing bigger than his body could handle.  She told me I needed to come in immediately to determine our options.  Matt was too far away to come home in time, so I dropped the kids off at a neighbor's and rushed down to the hospital alone.  I remember feeling numb as I watched the ultrasound, confirming that indeed it had grown aggressively, but at the same time little Miles seemed to be doing well and growing right on schedule with it in.  Dr. F had consulted with the radiologist who was reading the images, as well as a pediatric surgeon before my arrival, and she laid out for me the new plan.  We would take him sometime in the next week or two and do chemo to shrink the tumor, but the prognosis wasn't good.  They kept me there until I was composed enough to drive home.  I picked up my kids, came home and put them in front of a movie, crawled in bed, and fell apart.  I couldn't even call Matt, how could I tell him what I had just heard?  About an hour later my phone rang, it was Dr. F again.  She said that she had consulted with the head neonatal surgeon at the University Hospital, he had seen similar cases, and he felt the approach was much too aggressive.  He advised to watch it for the next couple of weeks, as it was typical of neoblastomas to grow in spurts and stop, but it was not likely to be malignant, and being too aggressive with treatment was often more harmful.  Dr. F scheduled a meeting for us with that surgeon, Dr. B, to get to know him and ask him any questions that we had.  Again there was some hope.  We met with Dr. B a few days later.  Having reviewed our case, he was confident that little would need to be done except to drain/decompress the tumor when little Miles was born, the rest would go away on it's own.  Our hope grew.  We watched him carefully over the coming weeks and he continued to grow strong and pass all of him milestones perfectly.  Each time I heard his heart beating perfectly and saw and felt his little kicks I had more hope.  His body grew and his tumor did not, and he was getting big enough that he could almost survive outside of me.  We only had to make it 3 1/2 more weeks, then he would be 32 weeks and have a really great chance of being just fine, a 90% chance we were told.  At 29 weeks I began to prepare for my preemie baby's arrival.  I didn't have much time, and with all of the ups and downs I hadn't done his nursery yet, but I knew what I was going to do with it.  I did our taxes, finished up a couple of projects, cut out baby blankets, bought some preemie outfits and hospital shirts to applique (I couldn't have my baby wear standard hospital t's, they had to be special ones that I had made him so he would know he was loved :). Then, at 29 1/2 weeks, his tumor grew again, and his little body began to show signs of failure.  I went in for my regular monitoring 3 times that week.  At the beginning of the week he still looked good, but on Thursday and Friday he was less reactive than he normally was.  By that point he had fluid building in his abdomen, a tumor the size of a softball that was supposedly attached to his kidney, and my amniotic fluid was 3 times the normal level.  We were both suffering, but we were so close.  On Friday, at exactly my 30-week mark, I was given steroids to help little Miles' lungs develop.  If they do the steroids at 30 weeks or sooner they can do them again after 30 weeks, so it was really just a precaution in case he needed to come sooner, but mostly Dr. F didn't want to miss her window to get that extra shot in.  On Saturday I got my second dose, then came home to attend to our usual Saturday projects and busy-ness.  I noticed that he hadn't really moved much that day, but that wasn't unusual, considering I was always busy and moving, and my fluid was so high he was practically swimming.  That night we sat down with the kids for a family movie night, and I started to really pay attention to his movememnts.  I poked and prodded and got a couple of little kicks, but not like I should have felt.  All night I laid in bed waiting for his normal night-time active kicks.  By 2 a.m. I prayed harder than I had for anything in my life that he would kick and I would know he was okay.  Nothing happened.  I kept waiting, and by morning knew that was probably my answer.  Sunday morning, April 1st, I decided I was going to risk looking like a crazy paraoid mom and just go into labor and delivery to be monitored.  I didn't grab anything or shower, it was General Conference Sunday and I was just going to run out to be monitored, they would tell me I was crazy and paranoid, and he was just fine, and I would be home before conference began.  I just went to the closest hospital since the one I usually went to was a longer drive, and the perinatology department was closed for the weekend, so I would just be seeing strangers down in labor and delivery there anyway.  It was just another non-stress test, no big deal.  The rest of the day was a blur.  I remember when they hooked up the monitors and I heart his heart beat, it was the most beatutiful sound, and I was reassured.  I texted Matt to tell him that his heartrate was steady and I would probably be home soon.  They monitored him, he sounded okay, his heart was strong and steady, but he was still not reactive.  They did a biophysical profile of him - basically an ultrasound where they checked all of his organs, then watched his movements.  We watched for 30-40 minutes, drinking juice, buzzing him with this little pressure-point massager thing that usually resulted in huge jumps and kicks, poking him, and doing anything to wake him up, but all we got was one feeble hand movement.  I had had many biophysical profiles, at least twice a week for the last several weeks, and he was usually so wiggly that they could barely get the measurements that they needed.  As I watched him, waiting and praying that he would start wiggling and tell us he was okay, my earlier reassurance faded.  Something was definitely wrong.  He was failing all of his tests.  Matt was still at home with the kids unaware that anything had changed as they stuck in my IV and prepped me for an emergency c-section.  I panicked as I texted Matt to drop the kids off somewhere and get to the hospital ASAP.  I couldn't call him to tell him what was going on because they had me on oxygen to try to improve the baby's condition.  The hospital staff would not call my doctor because he doesn't deliver at that hospital, they wouldn't call the surgeon (Dr. B) or the perinatologist (Dr. F) who knew my case because they weren't 'on call' that day.  This hospital had no NICU, no neonatal surgeons, not even a team to intibate the baby.  They insisted that he was too unstable for me to be transported and they legally couldn't release me to go elsewhere on my own.  I went into full panic.  They assured me that they would stabilize him after delivery and send him to the right hospital.  I knew that wouldn't be enough.  I knew the plan, and I knew my baby would die before he even had a chance if he was delivered there.  I took off the oxygen and called Dr. F's cell phone (she had given it to me several weeks ago and had told me to call if I had any concerns).  She didn't answer, but I sent her several texts telling her what was going on.  Within minutes she called back, she was speaking at a conference in Arizona, but she had sent her partner over to the hospital to monitor the tests that they had been doing so he could approve me for transport and she was coordinating with the University Hospital to get Dr. B. in immediately and fill the staff in on the details of our situation.  They approved me for transport, but there was a storm in Salt Lake and they were unable to get lifeflight off the ground (that part would have been kind-of cool, I don't think I will ever need lifeflight again :).  They sent an ambulance, and began to load me up to go to University Hospital just as Matt walked in.  They told him to follow us, and to obey all traffic laws and not try to keep up with them - if you know Matt, his first thought was 'challenge accepted.'  When I arrived at the University Hospital, Matt was just walking in the doors ahead of us - I don't want to know how.  The University Hospital staff re-ran every test and ultrasound and determined that he needed to be delivered immediately.  They had enough time to do a spinal rather than put me under since the surgeons were still finalizing their plan for little Miles.  That was a huge relief, I wanted to be fully conscious and know what was going on, I couldn't stand the thought of waking up several hours later and not knowing what had happened.  I remember crying as I told Matt over and over that he just had to be okay, we had come too far, he had to be okay.  As they prepped for the c-section and I was strapped to the table, in walked my long-time family doctor, Dr. H.  He doesn't deliver at that hospital, and it was a good hour drive in a snowstorm for him to get there, but he was there just to support us and do whatever he could to help.  It was such a comfort to have one familiar face in an unfamiliar hospital with strangers walking in and introducing themselves and what they were going to do every 5 minutes.  The neonatal surgeons briefed Matt on the 3 different plans that they had, depending on how things looked upon delivery.  Once they were in place, the OB's began the c-section and within a few minutes Miles was here.  He was born at 5:12 Sunday evening, weighing 3.5 lbs. and measuring 16 inches long.  Matt watched as they rushed him into the next operating room for surgery. Dr. H went back and forth between Miles and us as they performed his surgery and the OB's finished their work on me.  They returned me to labor and delivery just as a team of about 8 doctors and surgeons walked in and sat down in my room.  I knew that wasn't good.  They told me that his tumor was completely different than what they had thought, and that it had too much mass to drain it.  They had to remove the whole thing, which was their last resort and very traumatic for such a tiny baby.  Dr. H showed us a photo of the tumor on his cell phone, it really was unreal that such a little guy could have such a huge thing growing inside of him.  They told us that his heart rate and oxygen had improved as soon as the tumor was out, but they had to completely revive him 4 times during the surgery, which meant they were unsure of his brain activity due to the lack of oxygen he had suffered.  I remember telling them that I didn't care, I would take care of him no matter what, I just needed him to pull through.  They advised Matt to go with the team as they walked him to the NICU, and I waited.  Later Matt told me that when he walked in and saw him for the first time after his surgery his first thought was 'he needs to go.'  He told described his incision stretching all the way across his body.  He said that Miles' eyes were open when he walked in, but he was just staring, not responsive.  Matt placed his finger in little Miles' hand and got one feeble squeeze, but that was the only response he ever got.  About 30 minutes after they took him to the NICU, the head neonatologist came to tell me that there was nothing more they could do, he was just too weak.  I remember saying over and over through hysterics that there had to be something, they had to do something, he had to be okay.  They told me that Matt had watched as they revived him yet again in the NICU. They rushed me over to the NICU to be able to see him and hold him before they took him off of life support.  I will never forget the first time I saw him as they wheeled me into that room.  He was cradled in his daddy's arms, and all that I could see was his perfect little head covered in wavy red hair with the most perfect little cowlick in the back.  As they placed him in my arms I touched and kissed his sweet little head and perfect little nose and lips.  I held his tiny hands and feet and rocked him and hugged him tight.  Matt gave him a father's blessing as I held him, we told him how muh we loved him, and I held him as they removed his tubes and he quietly passed from this life around 8:30 p.m.  Matt then gave him his first bath, he smelled so perfect and sweet.  Matt's sister Kim came, as well as his Aunt Lori and Uncle Craig.  A photographer from Angel Babies came and took priceless precious photos of him.  Everyone marveled at how tiny and perfect he was, and how much hair he had, and how he definitely looked like his daddy and his older brother Mason.  We cried and held him until around midnight, then we let him go.  My heart and arms ached all night for my sweet boy.  The next morning my kids came to see me.  Matt had told them that morning that our baby had died, but as soon as they got to the hospital they begged to see him.  I felt like my heart would break as we explained again that he had died, but they insisted, so the nurses arranged for us to go see him one fore time before the mortuary came for him.  We all sat in a little room and each of my kids held their baby brother and played with his hands and feet and kissed his little head and nose.  They were so sweet and tender with him, they loved on him and marveled at how tiny he was.  Little Maylee rubbed his hair on his head and said over and over in her cute little 2-year-old voice 'bye bebe' as we left.  As we walked the long hallway back to my room, my heart broke again as Mason asked 'why can't we just take him home and let him get big and he could get better?'  I wish with all my heart that we could.  I know it was good for them to see him, but I don't think I stopped crying the rest of the day.  I cried for my empty aching arms, I cried for all of the lost hopes and dreams that we had for little Miles, I cried for his brother and sisters who would have loved and held him, and who wanted and needed him as much as I do.  I know he served his purpose here on this earth in his short life, and he was ready to return to his Father in Heaven.  I know that throughout the day of his abrupt arrival there were many miracles that brought him here.  Had I waited one more day (I had all of my regular doctor's appointments scheduled for the next morning), we would not have even had the chance to meet Miles and hold our little man alive.  Everything that could have been done was done, the surgeons and doctors who were supposed to be there were there, we made it to the hospital with the best possible care for him, and we had so many people praying and fighting for him.  Because of that I can find a small bit of peace knowing that this was the will of the Lord.  I may not understand it, but I feel peace and comfort knowing that it was meant to be, and that we will see him again and my arms will once again hold my little boy.  That doesn't mean it doesn't hurt.  No mother should have to finalize funeral arrangements for her son while filling out his birth certificate.  Yesterday I just wanted to remember his sweet baby smell, so I picked up the little blanket we had held him in and smelled it, then fell apart when it just smelled like any other blanket, no lingering baby scent.  I should be putting the finishing touches on his nursery, not trying to find a tiny outfit for him to be buried in.  It all seems so cruel and unfair, but I am grateful for the short while that I knew hime, for the brief time that I got to be Miles' earthly mother.  I wouldn't change that for anything, even knowing the outcome I would do it all over again just to hold him.  He will always have a very special place in my heart, he is my angel baby.  The pain will ease with time, but my arms will always long to hold my sweet Miles.  I thank the Lord for the knowledge that someday I will.