If you have found your way to this blog you are either family or friends. This is actually less of a blog and more of a way to catch everyone up on where we are as a family and Mason as an individual. These are our thoughts and raw feelings on all that has taken place.
On the morning on May 25, 2012 our lives were forever changed with the birth of our precious little boy, Mason Joshua Leschke. During his birth I've never felt more joy in my life or more connection to another living soul. Seeing such a precious little spirit that we helped create was a life altering experience. Mason continued to make his mom's life easy as he was born in less than a hour from when we got admitted to the hospital. Little did we know all that would soon take place.
We spent the next 24 hours enjoying our little boy. He was beautiful and perfect and we were all doing well. I was so excited to leave the hospital and take him home to start our new lives together. Everything seemed perfect as family came to visit and congratulations rolled in from friends. One small issue cropped up early on and that was that Mason didn't seem to want to latch or feed after birth. We were assured repeatedly by lactation that this was normal and babies were often sleepy over the first 24 hours with sometimes little energy or desire to feed. We continued to try feeding every 2-3 hours during this time with no success. We were a little worried, but were continually told this was all very normal. We just cuddled him and loved him and spent our first night as a family with both mom and baby recouping from the day.
The end of life as we knew it occurred at about 10 am on saturday May 26. Our baby was in the nursery and the pediatrician had come in to do rounds on the new borns. The nurse and doctor came in and told us they had found some concerning findings on Mason that we needed to discuss. They brought in our boy and the doctor preceeded to show us small, but important markings on Mason's hands and feet that were suggestive of Down's syndrome..... We absolutely felt like we had been punched in the gut. How could our sweet boy have this. They said they couldn't be sure, but genetic testing was needed to confirm. The worst part of all was that this would take 1-2 weeks to receive the results back. One of my worst fears ever was now not just a possibility, but a probability. Greta (Michelle's mom) came in right after we were given the news and was the only thing keeping us sane. How can life be so cruel to give you such bad news after you just had a taste of the happiness that becoming a parent brings?
The next few hours were a blur as we had to try to continue attending to Mason's needs. We were getting more concerned at this point as Mason still had hardly eaten and was nearly 36 hours old. He wouldn't take to Michelle's breast and every trick from lactation wasn't helping at all. We finally had to resort to finger feeding him. It took us 1.5 hours to get him to eat 10 ml and it took the effort of 3 of us to do so. By the time we laid him down after one attempt they wanted us to get him back up 45 minutes later to try again. We just could not keep this up as Michelle and I had both slept about 4 hours in the last 2 days and little Mason was not getting the rest he needed either.
We had the nurses take him to the nursery to try and feed him to see if they could have more success. By this time we were in full panic mode as our baby may have Down's syndrome and is unable to eat. All this time congratulations are continuining to come in. I just felt sick to my stomach. I just wanted to wake from this awful dream to find my Michelle still pregnant and this never happened. I've never felt so suffocated as I did in that hospital room when things with his health continued to disintegrate.
Within hours the nurses reported several poor attempts with feeding and the doctor wrote orders to have Mason transferred to Ogden Regional's ICU. How is my baby going to the ICU?? Michelle and I are were now in full panic and had been crying almost all day. We wanted to tell the rest our family, but after seeing the look on my dad's face after telling him his much anticipated grandson likely had Down's syndrome had crushed me. The emotions were too raw to talk about as things spiraled out of control and all this time everyone we know is texting and wanting to come see him.
Michelle and I tried to get a fews sleep to help us continue to cope. Within an hour of us finally falling asleep the neonatalogist doctor called our room at about 1am to tell us that they were thinking about transferring Mason to Primary Children's as they were incredibly concerned about his inability to feed. We were absolutely shredded by this news. We knew in our guts that he needed more care, but to have all of this news take place within about 12 hours was far too much. Michelle and I just lay in the darkness on her tiny hospital bed holding each other. How could this happen?? We'd gone from our happiest moment barely one day ago to feeling the seams of our life tearing away.
We consulted the neonatalogist the next morning and Primary Children's was contacted to transfer Mason. An ambulance showed up within an hour and I was watching horrifed as my brand new baby was loaded full of tubes and wires into a type of incubator. Before they loaded him we received a blessing in the ICU for him. I can only remember crying furiously as they proceeded, wishing I could do something, anything, to help my son.
I rode in the back of the ambulance with Mason as Michelle had to ride up front during the 50 minute drive. We were living a scene from every parent's worst nightmare, but this was our life in full reality. We walked with him up to the NICU, but had to be separated from him for about a half an hour as they did his assessment. We were crying, dazed, and lost.
The attending physician came out to talk with us about a laundry list full of things that were concerns about Mason. The life flight nurse thought she noted a murmur and felt his heart shape was more round that traditional and they wanted an EKG done immediately. They also noted there was fluid on his lungs, he was working too hard to breathe, he had failed his initial hearing test, and he needed fluorscopic studies done on his intestines immediately to see why he was unable or unwilling to eat. Stunned.....you wonder how it can get any scarier and then it does. How can it possibly get worse and then it does.
His initial EKG came out ok as they found no defects needing immediately intervention. However, there were several smaller issues they felt would need to be followed that could lead to later heart surgeries. They then wanted Mason to go down for his intestinal studies. Greta had arrived to support us and Michelle didn't feel she could handle going down to watch. I couldn't bare to have my son go through this alone, so I went with him for his studies.
During the studies they flushed fluid full of barium that could be tracked into his upper intestinal track with the idea of seeing if there was blockage etc... This came back clear and I felt mild relief. Next they had to insert a tube into his little behind and pump the fluid up the reverse way. My sweet boy only let out a whimper. They rotated and turned him him repeatedly under the scope and the doctor said "looks like Hirschsprung's disease." Did he just say disease?! I've never felt so helpless. I wanted to scoop my little boy off the table and make it all better. How can this be happening to us?! Michelle had a perfect pregnancy. He was perfect at every checkup and mile marker. He was supposed to be a perfectly healthy baby boy.
I asked the nurse for clarification on Hirschsprung's during our travel back to the room. I learned that it is a disease where a section of the lower intestine doesn't have any nerve innervation as it should and this causes stool to essentially get backed up and can be deadly if left untreated by surgery. She assured me it was treatable, but Mason may end up with a colostomy bag (bag that collects stool/poop from his intestines threaded through to his belly) for the rest of his life.
When I returned to the room I had to find my wife. By this time all of our parents were aware of how serious Mason's condition was and had joined us at Primary's. As I tried through tears to relay what I had learned with the doctor any and all facade of toughness either of us had had disintegrated. We cried harder and longer than we had ever imagined. I wept until I shook uncontrollably and neither of us could be consolled. We were at an absolute pinnacle of life and then within a day had been dropped to a depth of sadness, grief, and anger that I would never have thought possible. Why us? How could this be happening to us? What did we do so wrong to deserve this? How could a little baby boy have to endure all of this?
All the experiences that you hope to have with your child....potty training, tee ball, seeing them date, get married, becoming a grandparent, seeing them off to college and millions more were all ripped away from us. He may never be independent......he may need us forever. We'll never retire, never be able to travel, never see him become the man we hoped he would become. We all have a certain window through which we view our futures and ours had been smashed and left unrecognizable. I was left with no joy at all. There was no happiness left in my body over his birth. So unfair. What had this sweet little boy done to deserve such a harsh life sentence?? Neither of us wanted to go on. We couldn't conceive ever being happy again. All our hobbies, jobs, friends.....everything....none of it mattered. Those hours were the worst of our lives.
We met with the surgeon within hours and his surgery was scheduled for two days later. About midnight we were done at the hospital and finally left to go home. Our home seemed so empty and like a cruel trick. We walked in to see a home prepared for a baby......toys, swing, bouncer, clothes, and a perfect nursery all were waiting for a child....and there was none. Michelle and I took sleeping pills for the first time in our lives and mercifully the worst day we could ever conceive of was over.
My first thoughts in the morning were of absolute grief as I realized this was all too real and not washed away by sleep. Calls and texts unreturned were adding up and many were starting to suspect all was not well. What do we tell them? We couldn't bare to talk about it to others right now. The emotion and sadness of others was too much to take as we couldnt' handle our own grief. We hope you never come close to understanding any of what we have gone through. In a way we were both greiving the death of our son and caring for a sick baby in the NICU. All of the things we had thought and expected for our son and the future seemed to be torn from us. We had always been so happy and so blessed and it seemed as if we were being punished.
Greta was our absolute backbone to lean on when we couldn't have stood on our own. She would not have been in Utah if it had not been for Mike (Michelle's Stepdad getting a very strong feeling that Greta needed to get home from their vacation in Missouri and FAST). Greta made us eat and drove us to and from the hospital for the first several days. When we got to Primary's that first day we were barely able to touch Mason as the nurses felt he was over stimulated from the prior day. This is our son....all we want to do is pick him up, kiss him, hug him, and take away all his pain. But all we could do was lightly place a finger on his hand or leg.
He was on billi-lights for his severe Jaundice and had bandages covering his eyes, monitors for his heart rate/breating rate/oxygen, an IV into his head, a nasal canula to aid his labored breathing, and soon had a pic line run though his arm into his heart to give him nutrition to sustain him. No child should ever have to go through this.
He had his surgery on May 31st and we finally got a small piece of good news. Only a small segment of his bowel was damaged and had to be resected. The correction was to cut a small hole in his left lower addomen and run the fully fuctioning bowel out of the skin where it would drain into a colostomy bag. Because it was only the lower section they believe that at 6 months to 1 year of age that as his bowel lengthens and grows they will be able to reconnect his bowel to his rectum and he has a good chance of a fairly normal function from there minus issues with constipation.
Good news with the surgery, but several issues continued to loom as chest xrays continued to show fluid on his lungs and he continued to overwork to breath. They finally gave a green light to try and feed him some fluids through a nasal gastric tube (down the nose to his tummy) to see how his intestines would respond. He almost immediately started to throw up. It was so scary to see him gag and choke especially with tubes already in his nose and down his throat as he was still on a full ventillator after the surgery to breathe for him as with the meds his little lungs couldn't keep up. The throw up was bright green and yellow. They were worried he might aspirate it into his lungs putting him at further risk for pneumonia and had to suck out his throat and stomach.
That snuffed out the small bit of optimism as they said he may have to get a g-tube (feeding tube straight through the abdomen into the stomach) to eat. We have been plain zombies during this time. Our lives are sleeping, going all day to Primaries, coming home and worrying...and pumping for Michelle. We didn't want to eat, didn't want to listen to the radio, didn't want to open the blinds, and didn't want to talk to anyone not named mom or dad.
Any thought outside of the basics felt like too much. We didn't want to talk to anyone else because we could barely verbalize to each other without breaking down. As I write this.....talking about all that has transpired feels like a barely healing scab. Trying to share our experience with each and everyone feels like reliving Hell again and again and tears that small protective scab away. Underneath that small protective layer lives the hurt, emotions of a lost and drastically altered life, and grieving for a lost healthy child.
It is a hard thing to comprehend truly living one minute to the next where life doesn't exist outside of your own bubble. We have a hard time understanding that the world continues to spin and other people continue to be happy when our own world is in so much chaos and sadness.
During this time despite all the uncertainty of his health, one question continued to bounce around the inside of my head.....Does he have Down's?? If so.....What will he be like?? Will he be smart? Will he ever be independent? Will we be able to communicate with him well? Who will take care of him when Michelle and I pass away? How will we afford to take care of him when he is an adult? These types of thoughts knaw at you constantly with the "not knowing" and seep into any quiet moment of melancholy and ruin any peace.
Finally on Monday June 4th we got a call from the nurse practitioner saying they had the results of his chromosome testing. We went into instant tears......we knew the answer. We called her back and she said she hated to tell us over the phone. I told her we knew and just needed to have it confirmed.....Yes, he has Down's Syndrome. All the air left the room and time stopped. Outside our home was a perfect summer day with kids laughing, lawn mowers buzzing, and birds chirping. "How can the birds be chirping?" Michelle asked me in tears. Again, how can the world continue to be so happy when our lives continue to worsen every day??
We agreed to meet the geneticist that night at 6pm. We called all of our families and relayed the news. My heart filled with dread as we got to Primary's and filed into the family meeting room where we had received the bad news of Mason's intestines. The geneticist was very kind and reviewed all of Mason's findings with us. He has traditional Down's Syndrome, but there is a large variability that cannot be measured during early life. We learned that Mason's intestinal defects, heart abnormalities, and even his failure of his newborn hearing screen were all linked to Down's Syndrome. He was encouraged by Mason's extremely mild physical manifestations and reported that he had the best muscle tone of any baby he'd seen in two decades that had been diagnosed. Raising a child with Down's Syndrome will not be easy and there are several challenges. However, he gave us a brighter picture than we had thought possible and I left for the first time since his birth with something very small and delicate, but very real....hope.
Finally the majority of the cards were on the table. There was less likelihood of another hidden problem to crash into us. I cried tears of sadness and tears of joy. Our little boy is different and this is not what we or he asked for, deserved, or ever expected. This happens to other people...not to you. Michelle took every precaution possible to prevent problems in pregnancy and as "planners" we were not going to have children after she was 35 just to be safe because of the increased risk of exactly what we are dealing with now. However, now we knew where we stood and we could start the slow process of moving forward. Having control of your life no matter the situation gives you some sense of power. We could now use this time to learn about his condition, set in motion every program and resource to help him develop the best way he can, and let him begin his healing. During this time Michelle and I resolved to never treat him differently or label him. He is not a "Down's child." He is Mason and his ability to learn, grow, develop, and amaze us is boundless.
We still grieve for him and ourselves. I am still full of bitterness and anger about all that has occurred. We understand days will continue to get easier as we pave our way down this path. We have also learned to cut ourselves a lot of slack. We can go from OK to tears in a matter of moments.
In the last week Mason has shown a dramatic upswing towards stable health. His colostomy is now passing stool as it should, he is needing far less oxygen, and he is mastering feeding on both the bottle and with breast feeding. We are learning to care for his colostomy bag and simply put.....it is overwhelming. So sad for a beautiful baby to deal with this. It is tedious and messy and reminds us of how much has occurred since our "prior life."
Mason still has benchmarks to achieve before he can come to his true home. However, there is optimism that he may come home in the next week if all continues well. His tubes and wires slowly become less and less and it is less scary to love and snuggle him without worring that we are going to hurt him.
He is an amazing child. His spirit is so pure and mild and radiates something that touches the souls of all those that come in contact with him. The staff at Primary's all request to be his nurse and many people feel an immediate emotional bond because of the way he makes them feel. The nurses at Ogden Regional also fought over who got to care for this warm and special spirit. When I am around him his warmth and purity cleanses me and helps to fill that void of sadness. That is what we had to keep coming back to....we always felt better when we were with him. It is the longer that we were away from him that the negative feelings/thoughts get stronger and stronger.
If you have read this novel all the way to the end....we thank you all for your support, your love, and your prayers. Please understand that we did not want to close anyone out of lives, but had to do what we needed to just make it through each day. Had he been dealing with one condition (such as the intestinal surgery) then it would have been much easier to include our friends and family with what was transpiring, but we didn't even know what we were dealing with most of the time we were there. Most babies go to Primary's and get better and then go home. Our baby was not ever going to get all the way better before he went home. The not knowing and still not knowing what the future holds is the scary part.
I understand that many of you close to us will feel sadness and sorrow for us over this dramatic change in our lives. However, as we get nearer to the comfort we need to resume our lives and re-open ourselves to the world.....we ask just a few things. First, we don't want to be a pity case. We don't want to be Kurt and Michelle parents of a sick or child with a disability. We want to be Kurt, Michelle and Mason, your friends and family members. We've learned very quickly the difference between sympathy and support. We don't need sympathy. We carry enough sadness and grief on our own for everyone. The phrase "I'm sorry....." just makes us long for what has been lost and re-opens wounds. What we do need and are greatly appreciative of is
support in all its shapes and forms. We want you to treat us normal and want to continue our friendships.
Secondly, and please understand why we ask this.......please come to terms with any sadness you may have on your own. Seeing everyone so emotional when we see them again leads us back to a place we are desperately trying to climb out of. We want and need some normalacy in our lives as we move forwards and try to seek out and reclaim happiness.
Lastly, if you are a parent please go home and hug and love your children with every ounce of passion you possess. Be thankful for their health....mind, body, and spirit. Also, please teach your children that it is ok to be different and love them for who they are (not what you want them to be).
We want you all to know that we love our son very much and are going to do the very best to give him everything (just like every parent). There will be challenging times ahead....and it is still very scary to think about what the future might hold but we know that we will be happy again.
Thank you for everyone's love and support. We are truly blessed to have such wonderful family, friends, and co-workers.
Love,
Kurt, Michelle, and Mason
Wow, what a journey. One that we never asked to be on or could have ever foreseen, but here we go for better or worse. Thank you to everyone for all the love and support. Here goes at least another mini-novel.
I felt incredibly at peace our entire drive home until we pulled into our neighborhood and then every emotion and burden I had shouldered for the past 3 weeks hit at once. Tears.....sad and happy came in a storm at the thought of all we had endured through and the opportunity to bring our little boy.....HOME. I couldn't have asked for anything better on my first Father's day.
I am happy and relieved to report though that after a rough start things began to start improving. Something seemed to click with Mason and daddy found a way he liked to be held during feedings and poof.....he became an eating machine. He went from struggling over 40ml for 45 minutes to today ploughing through 75 ml in under 20 minutes. We have slowly begun weaning his oxygen and he is already on half of what he came home on. 
Our little boy also continues to amaze. We were told children with downs struggle for several weeks especially after surgery and this may slow his ability to come home for a long period. He came home less than a week after hearing this. We were told that these children are very floppy and can't move against gravity. He has been nicknamed "Squirm Worm" and his legs and arms are always moving and can Houdini out of the tightest swaddling. We were told his neck would have no strength at this time. He can lift it and turn his head side to side during tummy time. You have to walk a fine line between optimism and realism, but everything in my soul tells me this little boy is going to blow our minds throughout his life.
Number one: It really is all about family. You may have disagreements with them or life paths may pull you all in different directions. But, when the chips were down every single member of our families came to our rescue. Michelle and I don't know how we would have made it though all we have. The nurses joked that Mason was easily the most loved visited baby in the NICU.
