“Every Story has a Different Ending”
March 12, 2013 was the day our lives had begun to change forever. We were 2 short months away from meeting our little guy, and life couldn’t have been any more perfect. We had a beautiful little lady, soon to be little guy, and my husband had just landed an AMAZING job in Vernal, Utah, so we had plans to move there as soon as this little boy made his entrance. A few days prior to the 12th, I had a growth ultrasound, and the tech mentioned she wasn’t getting very good views of the heart. She would talk to the doctor and let me know if he wanted to do another scan. The doctor came in and told me that just to be cautious he was going to send me to a perinatologist to have them do a more thorough scan of our little guy. I didn’t think much of it. They didn’t give me much detail at all, but I remember hearing them say in the hall something about no blood flow and left side. They got me in as soon as they could which happened to be the 12th, the same day we laid my sweet grandpa to rest. I spoke at his funeral, and my mom, little girl, and I headed to Provo after we went to the cemetery. Up to this point, I was still naïve. Jordan had just started his new job in Vernal a week prior, so I told him not to take a day off to come with because everything was fine. My mom would be there to go with me, so he stayed in vernal so he could save his vacation for when the baby came.
On the way up, Az fell asleep. She hadn’t napped all day long so I asked my mom to stay in the car with her so she would stay asleep. Once again I was thinking nothing was wrong so I felt fine going in alone. I went to my appointment and another tech came in and did my ultrasound. She finished up and said the specialist would be in to explore a little more then talk with me. Dr. Gainer came in and she started rubbing the probe around checking out lil’ man. She was super sweet and just kept looking. At this point I was starting to get nervous. I knew something was wrong. I just didn’t know how badly. She asked me if the little guy had a name and I replied, “yes his dad got his way and we are naming him Tytan!” she looked at me and said, “I like that a lot. That’s a very strong name and your little guy is going to have to be a very strong lil’ one. I hate being the one to tell you this but your son has a heart condition.”
At this point I was still in denial I think. I was trying not to break down and I just looked at her and said, “Okay but it can be fixed right?” I was thinking a minor surgery and everything would be okay.
She further explained that yes it can be fixed but it is going to be a long tough journey for all of us, especially him… This is where I lost it. It felt like the perfect life I had been living was crashing down. Our little Tytan has an extremely serious heart condition called Hypoplastic Left Heart Syndrome. It is basically where the left side of his heart does not work. It is going to require surgery and lots of it. She explained I would now be having a very high risk pregnancy and spending much of my time at the doctors. I would be delivering at the University of Utah and they would schedule to take him because they don’t want me to go into labor on my own. They dont want to chance losing him, so they want me at the U with the right team to stabilize him. They will take him immediately after birth to Primary’s Children. They will make sure he is stabilized and then he will go into surgery shortly after. I guess they like to do the first open heart surgery as soon as they can. This will be his first of the three. He will have another one at 6 months, and a last one at 18 months-2 years then eventually a heart transplant when this one wears out. If you can imagine at this point I am dying. I had so many questions and what ifs running through my head. The doctor asked if I had family with me and I told her my husband was in vernal and my mom was in the car with my little girl. She tried calling my mom but couldn’t get a hold of her.
And if that wasn’t bad enough she continued to tell me my baby would be spending the first 6-8 weeks of his life in the hospital, come home on a feeding tube and oxygen, and many other horrific things. She started telling me survival rates and other complications he could have. At this point I was a complete and total mess. I just asked her to stop and said please just let me take in what you initially told me.
She again was so sweet and tried to console me. She told me to go ahead and call my husband and take all the time I needed then to come out and talk about a few tests that I needed done ASAP and what direction we needed to take from there. Calling Jord was the hardest call I have ever made. I didn’t want to be the one to tell him his little man that he has been soooo excited for had a very serious heart condition and there are chances we may never bring him home. Jord sobbed and sobbed like a baby. It broke my heart and I just wanted to reach through the phone and hug him. I felt like a failure as a mother even though I know there was nothing I did or can do to change this. The cause is unknown and it just sometimes happens.
After I got off the phone with Jordan I went back with the specialist. She set me up about 20 different appointments including the one at primary’s to start our heart journey. I also had a test taken to make sure no other genetic problems were wrong with him such as Down syndrome. It was a long 10 days but thank heavens the test came back normal and everything else with him looks great!!
Fast forward about 3 weeks and we went to our Cardiology appointment at Primary’s to receive a complete diagnosis and fetal echo. They once again did the scan, and I was taken into the dreaded conference room. Pretty soon our cardiologist, Dr. Menon, along with a social worker came in. My parents were with me, and we were able to conference call with Jordan, so he could hear things from the doctor directly vs. me relaying the information at the time I didn’t know much about. They told us Tytan would be born with Unbalanced AV Canal & Hypoplastic Left Heart Syndrome.
April 19th, 2013 is the day all of this was about to become a reality for us. I was beginning to dilate, so my doctors in Provo felt like I needed to be in Salt Lake. They made arrangements for me to stay at the Ronald McDonald House for at least the next 3 weeks until they would induce me. I had my first visit schedule with the Dr. Silver, who was supposed to deliver Tytan, on Monday the 22nd. We decided to go up and spend one last “normal” weekend as a family. We headed up Friday the 19th to meet Jordan who was coming from Vernal. On the way up I began to have contractions. By the time I got to Salt Lake they were pretty close, so we went out to dinner then called the U. They told me to come get checked just to be safe. When I got in there I was only at a 3. Their advice was to go get a hotel room and just take it easy. If they haven’t stopped in an hour come back. We decided to call my parents and have them take our little girl. They were still an hour & a half away, so we had to wait until they got there which happened to be about 11:30 at night. By this point I was really hurting and just knew this little guy was about to make his entrance.
By the time we got back to the hospital I was to a 6, and there was no stopping it. He was going to be born. They immediately took me back into the “special delivery” room and started my IV and epidural shortly after. Within an hour I was to an 8, but they were trying to hold me off until at least 5:00 AM because they wanted me to be on antibiotics for at least 4 hours. Well around 3ish I pushed the nurse’s button and told her that I wasn’t hurting but I felt SOOO much pressure and really needed to push. I was at a 10+ and the baby was on his way out. The delivery team came in and within 15 minutes it was baby time. They broke my water and he immediately followed with a half a push. It was so amazing to hear his little cry. I was sort of in shock that everything happened so fast and all I just cried saying, “he’s so little!” “He’s perfect” They let Jord cut the cord and off he went through the window to their NICU. We seriously only got to see him for a total of 30 seconds. Tytan Jordan Walker was born at 3:34 AM weighing in at 4 lbs. 12 oz. and 18.5 inches long. It broke my heart that I didn’t get to hold him or even take a picture of him, but I just wanted him safe. The first few hours were rough. He stopped breathing shortly after they passed him through the window. Finally 3 hours later, we got to see our little guy for the first time and walk with life flight. He crashed again right as they were switching him to the transport incubator. I buried my head into Jordan’s shoulder & pleaded with him not to take my baby yet.
Tytan had a rough go from the start. He struggled breathing, so he was placed on the ventilator up until his first surgery which meant no holding him. We spent our days/nights sitting next to his bed reading stories, holding his hand, and letting him know how badly we needed him there in our family. He was also able to be blessed & receive his name the night before his first surgery.
This was the day we were all waiting for, the day we were dreading, the day we couldn’t wait to have over. We spent most of the entire night next to our lil man talking to him, kissing him, and letting him know how much we needed him. We finally left his bedside around 2 in the morning and went down the hall to one of the sleep rooms. The sleep rooms are an experience in and of themselves. They are a lil room about the size of a closet with nothing but a plug and a twin bed in it….ha ha It was the longest night of my life. Even though I was in there for a total of 3-4 hours I just kept dreaming, kept waking up, kept thinking of all the what ifs:( Finally I got up at about 5 and got ready for our big day. It was bittersweet! In a way I was excited because I knew this was one step closer to helping our lil man. He would eventually feel better because of this. But at the same time I was terrified because this may be our last day on earth with our lil man. The surgery is intense. It’s rough and there is no 100% guarantee that your baby will come out of surgery. We heard these words and the risks many many times. I signed so many consent forms that morning that I truly thought I was signing my life away in a few of them. I heard so many risks and complications that morning that I wanted to puke. I know it’s their job but I just wanted to yell, I don’t care about the risks. Just do it! He needs it and there is no way of surviving without it.
We got to his room just before six and he was scheduled to go in at 7:30. The doctors and nurses both agreed that we needed to hold him since we hadn’t and the chances of him not making it out of surgery. So we got to snuggle our precious lil man for the first time ever. I never wanted to let go of him. I just wanted to stay there forever. It was the fastest hour or so of my life, and before I knew it the team was coming in to get him. I laid him back in his bed wondering if that was going to be my first and last time holding my son. It hit me right then that this was it. This was the moment our life would be changing, for better or for worse, even more than it already had in the last week. We would have to wait 8 LONG hours to know though just how life would be changing. We followed his sweet lil bed into the OR and they told us it was time to say our goodbyes. The tears fell as we kissed him and kissed him then watch him wheel down the hall with our ill man.
It was seriously the longest 8 hours of our lives. We had a little pager and would receive updates every few hours from the OR team. Thank heavens my parents brought AZ up for breakfast, so our little ray of sunshine made a couple hours pass faster. As we sat in the OR waiting room, it seemed like everyone else was in and out. We were one of the first ones there and about the last to leave. Finally around 2:30ish we received a calling saying he was out, his heart was beating again, and the doctor would be out to talk to us shortly!! When I saw Dr. Eckhauser, I seriously just wanted to run up and kiss him. It may sound crazy but I love this man. I love this man for one reason and one reason only….He saved my boys life. He gave him just a little bit longer to live. He gave us more time with our tough lil Tytan and for that I will forever be grateful to him!! I couldn’t wait to get my hands on our little guy. Of course to see him after surgery was one of the hardest moments of my life. He looks horrible and so painful. He was hooked to soooo many tubes that it was hard to find a spot on his body to kiss or touch.
Tytan had a relatively good recovery after surgery. It was always one step forward, two steps back, but we survived and were able to go home as a family of 4 after 5 LONG weeks. Our days at home were scary, yet so perfect. We didn’t take him anywhere but to the doctors, so we spent our days just cuddling and playing. It was so fun to watch his big sister fall head over heels for him, especially when it was something we weren’t sure we would ever get to see. Tytan did so well at home and was off oxygen and eating by mouth after a month of being home. At times I forgot my little guy even had a special heart because he was so happy and doing so well. We were able to live this dream life for about 2 ½ months.
The first of September is when our hard journey became even harder. Tytan had been in the hospital twice since he came home the first time, but they were short stays. One Saturday morning our sweet boy turned blue and started projectile vomiting. His heart rate was 260 and I knew something was seriously wrong. I called 911 and told them he needed to get to Primary’s, so to get Life Flight headed to Nephi. Waiting 20 minutes for an ambulance was the longest wait of my life. I kept staring at my little guy’s limp body wrapped in his daddy’s arms and was just waiting for his heart to stop and have to start CPR. The ambulance crew grabbed him and we left immediately. We were met by Life Flight in Nephi and off to Primary’s CICU we went. I remember holding my little guy’s hand, looking out the window, and feeling like he would never return home. I thought I was going to lose him that day. When we got to Primary’s they shocked him and got him out of SVT. Within a few hours he was back to my happy boy. He kept having SVT spells over the next few days, so they didn’t feel safe sending him home and wanted to intervene. They chose to go in to do an ablation to ablate all his extra pathways, so he wouldn’t be able to go into SVT anymore. 9.12.13, exactly 6 months to the date of finding out about Tytan’s heart has “taken the cake” for the absolute worst day in the history of my life. I never thought I would ever in my life experience the things that have taken place today. It has been a horrible, horrible, nightmare that I am praying I wake up out of. As you all know Tytan went in for surgery today. He was scheduled first case, so we walked down our starving baby to hand him over once again. I cried and it was hard, but not as hard as it was last time. I even mentioned to Jordan it wasn’t as hard this time. I told him I’m not as worried and can’t wait to hold him in just a few hours. I never in a million years expected our day to end the way it did. We handed our little man over at 7 AM and were told it would take 3-4 hours. They told us they would give us updates periodically and well they didn’t. We heard from them for the first time at 11:00 and they told us things were going good, but it would be a few more hours. My parents came up and brought Az, so we played with her to try and keep our minds busy. We stayed in the room with her, took her to the play room, had lunch, and walked the halls. At about 2:30 the nurse came in and said they needed to clean Tytan’s room upstairs and we needed to get our stuff out because after surgery he would be monitored in the CICU. I asked them if they would please call down and see how Tytan’s surgery was going. At this point he had been in surgery for 7 1/2 hours. They said they were about done, Tytan was tolerating things well, and they should be finishing up in the next hour. As you can imagine at this point we were dying. My heart was skipping a beat and I COULDN’T wait to hold my sweet little man. We waited in the surgery waiting room until we FINALLY got the call to go speak with the surgeon.
At about 4-4:30 we met with Dr. Sarrel. She said things went really well, but the surgery was unsuccessful. They found out Tytan has multiple extra pathways and they were unable to ablate all of them because of where they were located. They did slow a few of the paths down though. She said how unique Tytan’s heart was and that they only see a heart like his once in every 20-25 years. She said it was very interesting and showed us some pictures of his heart. She said Tytan tolerated it great, and they were just getting ready to take him upstairs to the Cardiac ICU. She said we would spend 1-2 nights there and go from there. It was such a relief and I was SOOOO excited to see my little man. We actually raced up the stair running through the hallway to meet our little man. We probably looked like 2 little kids running through the halls. Little did we know as we walked through those doors our lives would change FOREVER. We would never again laugh and be truly happy like we just were walking down those halls.
As I walked through the doors I heard over the intercom, “CODE BLUE” I looked at one of the nurses and said, “Greg, that isn’t my baby boy is it?” All he said is “I don’t know but I would run down and see what is going on.” I ran downstairs faster than I ran up them, but this time there was absolute fear in my heart instead of happiness. I ran in the Cath area and Dr. Adam Ware (formerly from Nephi) met me at the doors. He didn’t have to say a word. I knew it was my baby. I knew he was gone. I said to him, “He’s not gone yet is he?” He simply said, “Not yet. They are doing CPR now and doing all they can to bring him back.” I instantly fell to my knees and pleaded with the Lord out loud…. NO, NO, NO Please don’t take him yet. Please let me keep him longer. Doctors, Nurses, RT, and millions of other medical staff flooded the room trying to help. When I finally came to and back to reality I couldn’t stop shaking. I asked Dr. Ware if he would please get in there and give my baby a blessing. I just knew that he needed a blessing. After waiting about 10-15 minutes I asked Adam if I could see my baby. I knew I couldn’t touch him but I just wanted to see him. I wanted to know he was there. I wanted to make sure they were doing all they could to help him. Adam was very good to give us updates every few minutes. He got permission for me to come in and it was not what I was expecting. It was awful. It is like a scene from a bad movie that is constantly on repeat in my head. There were more people than I even imagined. My sweet little boy’s limp body was laying on a large OR table limp & lifeless. Three men were taking turns doing CPR and with each compression blood would squirt from his incision. I kept thinking how can I hand over such a perfect happy smiling baby and return to this. After about 5 minutes I couldn’t take anymore. I couldn’t watch them torture my baby any longer. As I was walking out the ECMO circuit (life support) was entering. They would be hooking MY BABY up to a heart and lung machine. How could this really be happening?
As I went back in the imaging room I see my poor 23 old husband with his head in his lap and eyes filled with tears. He said to me, “Babe he’s taking our little boy home. We need to call and tell our families to get up here, so they can come say goodbye.” I will never forget the fear and heartache in his eyes. My husband is tough, so tough, and very seldom cries. When he does I know things aren’t good. We made calls to our family and continued to wait. Dr. Ware was so awesome and constantly updated us. Finally after 55 minutes Tytan was hooked up to ECMO and they would be transferring him to the CICU.
An hour later we finally got to see our little man, but it wasn’t the little man we handed over and NOTHING could have prepared us for what he was going to look like. Another Nightmare. To be honest I didn’t know babies looked this bad ever in their life. He was purple, cold, and covered in cords, blood, and IV’s. It was pure chaos around him. He earned himself 3 nurses and a doctor in his room at all times. They were constantly drawing blood and chasing labs trying to get his vitals up. They were transfusing blood bag after blood bag into him. My heart was broken. My body was in shock. My mind was scared. It was happening. The thing I worried and worried and worried about since the day he was born was really happening.
Finally Adam came into the room with a Echo Tech and was able to give Tytan a blessing. It was the most beautiful blessing I have ever heard. I don’t remember the exact words, but I will never forget the spirit in the room after that blessing. My body was overcome with such peace and I just knew that he was going to be okay. It wasn’t his time yet and the Lord was aware of our needs. Even though I felt some peace it didn’t make me any less scared. It was the longest night of my life. We got no sleep and received bad news after bad news. Jordan and I found ourselves in constant prayer pleading with our Heavenly Father to spare our baby boy’s life.
Over the 2 weeks we experienced every emotion we possibly could. We were told countless times our boy couldn’t get much worse, and we needed to start making decisions. I knew things were really bad, but in my heart I just felt he was going to be a miracle and recover. He had touched so many lives already and there was no way his mission on earth was through. Tytan was listed for a heart transplant. He came off of ECMO after nine days. He was removed off the transplant list, not by choice, when he received a MRI and found out much of his brain was damaged. As parents we still continued to fight. We would fight and keep him here as long as we possibly could. For 6 weeks we spent our life in the CICU recovering in rehab and waiting to do another open heart surgery. He couldn’t be taken into the OR for another 6-10 weeks because of the bleed on his brain.
On October 17th, we received the news that is every parent’s worst nightmare. Our little guy had taken a real turn for the worst, and we were told his heart was failing and failing fast. There was nothing more we or the medical team could do except love and cherish what little time we had left with him. Over the next three days we did just that. We tried to enjoy our “lasts” as a family of four reading stories, rocking, going for wagon rides, family pictures, and even celebrated his half birthday.
On October 20th, 2013 we witnessed one of the hardest yet most spiritual/sacred experiences we probably ever will as our sweet little baby boy who had fought so valiantly and struggled in so many ways was released from his small, tired, weak body, and entered into celestial glory. As his little heart slowly stopped beating I will never forget the way those big blue eyes looked at me, and I had to say “You can go little man. Mommy will be okay” As devastated and heart broken as we were and still are we are happy for him. He was finally free. He was whole. He was happy. He was PERFECT!
Our little guy has been out of our arms for 10 months now, but he has never once left our hearts and minds. He has changed our world completely, and we couldn’t feel more blessed to have him in our lives. It wasn’t the fairytale ending we all hoped for, but we will forever cherish the six month the Lord let us have him here. He taught us so much and continues to teach us on a daily basis. We have learned to trust in the Lord’s will and have faith in the darkest of times. Most important, we have testified of the love our Father in Heaven has for each of us. Not once in the last year of struggle have we been left alone. He has had his arms wrapped around us and gently led us and gave us the strength to get through one more day. As much as our arms and hearts hurt to hold Tytan right now, we know the day will come. For now, Tytan is safe, happy, and busy doing work beyond the veil. Tytan passed his test and paved the way for us. Now it is time for us to continue in this life and pass our test, so that little boy is waiting for his family with open arms when the time comes. “He didn’t say it’d be easy….He only said it’d be worth it”