Be Peaceful

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The anxiety is suffocating…..debilitating. Oliver is tentatively scheduled to have his 3rd open heart surgery next summer. I realize this is almost a whole year away but I can’t help but feel scared for that day. It is always on my mind and I can’t escape it. Everyday I get choked up and my eyes fill with tears at least once. In some ways it would be nice to do it now and get it over with. However, that is not an option. Ollie needs to be big and strong so the shunt they place will last him a long time.

I find myself worrying every day if he is going to live a full life. I have felt at peace with this since he was just a few months old, so I am having a hard time coping with these feelings again. I am racked with guilt when I put him to bed each night. I think, are the times I get to do this numbered? I know this sort of thinking is not healthy, but unfortunately it is the harsh reality. I feel torn between being a good parent and having him on a strict schedule, and being a fun parent and letting him stay up just a little longer so I have more time with him. I am racked with guilt when I am comforting his baby sister and not playing with him. I am racked with guilt when I am not patient with him. These feelings of inadequacy have been weighing heavy on me. Before conference, David and I were talking about what we wanted to hear and questions we wanted answered. I told him I needed someone to talk about mothers and to tell me I could do this. My prayers were answered by Elder Holland. I felt like he was speaking right to me. He said many things I loved, but these words stuck with me, and will forever.

When speaking of the love a mother has for her child…”this kind of resolute love suffereth long and is kind, seeketh not her own but beareth all things, believeth all things, endureth all things”. I know that I can endure this…even if I don’t want to face it.

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When I am feeling inadequate, when I am guilty for not spending enough time with Ollie, when I am struggling with faith in what the future holds, I will remember these words. I hope you will too.

Life after the Glenn

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February 10th 2014

Oliver had a sedated echo today. The results weren’t exactly what we wanted to hear but it could have been worse. His heart function is decreased. It isn’t squeezing as efficiently as it should. He is getting put on blood pressure medication so his heart doesn’t have to work as hard. I am surprisingly not too sick about it. I am learning to have faith that ALL will be well. I know this. Oliver has work to do. David headed home this morning. He couldn’t miss school. It hasn’t been too bad being here alone. My mom and dad will come get Ollie and I tomorrow if we get to come home then. I am praying we do because I know he will heal best there.

February 11th 2014

We got to go home today!!! Oliver is amazing. I am in awe of courage and how brave he is. I can tell he is still in pain and that is hard for me to watch. I have this weird feeling that he is actually our kid now and we get to call the shots. We won’t have to weigh him every day and we get to choose what form of “feeding” is best for him…and best of all is his next surgery should be a few years out! It feels good.

February 16th 2014

Oliver seems to be doing a lot of screaming lately and not much else. I feel that David and I are approaching our breaking point. We are both exhausted.

As I searched through my journal before writing this post, I noticed a theme. It was that life after the Glenn was not easy. In fact, the 4 months following the Glenn were the hardest 4 months I have ever lived. Oliver acted as if he was in great pain. There wasn’t much sleeping at our house. David and I had no other choice but to carry on and push through it. We did all we could to make him comfortable. We said many prayers that we could get some sleep. It seemed as if they weren’t being heard. Nights were spent taking turns holding Ollie as he screamed hysterically for hours. I do not know how we managed, but somehow we did. Many times I found myself thinking or saying aloud “I never ever want to relive any of these moments”. I feel guilty about that now but in the moment it is how I truly felt.

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Days after the Glenn were spent managing Oliver’s pain and trying our hardest to get him on a schedule. As new parents we were discouraged that we couldn’t nail down a schedule with him. I constantly compared him to other kids and felt we were failing as parents. He ended up sleeping in our bed. We were scared to have him in his own bed as he was attached to oxygen 24/7. This was probably a mistake but it was the only way we could get any sleep. I can look back on our situation now and know that we did the best we could.

Oliver had an echo a few weeks after being released from the hospital and it revealed that the blood pressure medication was working and his heart looked much better! It was exactly the news we were hoping to hear. He was also cleared to just wear oxygen at night. We were grateful that we wouldn’t have to lug an oxygen tank around with us anymore! It was moments like this that I had the thought that I would never be able to repay my Father in Heaven for these blessings.

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I have found that when we go through challenges, God puts people in our path that either need us, or we need them. On April 5th I had one of these experiences. My journal entry goes as follows:

I had an interesting experience today. I went to a party to get suspenders for Ollie and the people hosting the party started asking me questions about him. I was asked where I had him and I told them down in Utah. They then asked why and I told them that he had a congenital heart defect. The woman that owned the house and that was hosting the party told me she was a nurse and asked what was exactly wrong with him. I told her he had HLHS. She was silent for a moment and then she replied that her daughters baby was diagnosed with HLHS 2 days ago. It was crazy! They asked me questions and got to look at Ollie and talk to him.

I felt so compelled to go to this house party to get Oliver suspenders. It was way out of my comfort zone to attend a party at some ones house that I don’t even know but for some reason I was adamant that I get him suspenders! I am so glad that I listened to what I now know was the spirit.

All in all, life after the Glenn was difficult at first. We have however made it to the stage called the “heart holiday”. This means that there aren’t any surgeries in our near future and life seems and feels pretty normal. I cherish this heart holiday and try not to think too much about what the future may bring. Oliver is now 18 months old. He is a tornado. He has a strong spirit and personality. He is not phased or slowed down at all by his little heart. Even though he makes us tired, we cherish each day we have with him. In the heart world we are faced with death constantly. It is on these days that I thank Heavenly Father that Ollie is still here with us, that I hold my head up high and hold the tears back, and take life one day at a time instead of dwelling on the future. I have a long way to go still, but I am to the point now where I can deal with this. I can deal with it because I have knowledge that God lives, that Jesus Christ lives. There is life after death and it came through our Savior Jesus Christ. I am comforted by Jeffrey R. Hollands words in a conference talk titled “Like a Broken Vessel” I think of these words every day.

“I bear witness of that day when loved ones whom we knew to have disabilities in mortality will stand before us glorified and grand, breathtakingly perfect in body and mind. What a thrilling moment that will be! I do not know whether we will be happier for ourselves that we have witnessed such a miracle or happier for them that they are fully perfect and finally “free at last”

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Interstage

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The stage between the first surgery (Norwood) and the second surgery (Glenn) is called “interstage”. The mortality rate between these two surgeries is extremely high. We were on constant watch to make sure everything was going well. At one of Oliver’s post-op check ups around the first of December his cardiologist said that we should start making plans for the second surgery. My jaw dropped! It seemed as if we had just gotten home from the hospital and we were already talking about the second surgery! He said we would most likely shoot for February but he needed to check the schedule to make sure it would work. Within a week after that appointment I got a call from the surgical coordinator. It is strange scheduling an open heart surgery over the phone. I would compare it to scheduling a dentist appointment. They offer a date and time and you decide if you can make it work. Surgery was set for February 6th and a heart cath was scheduled for February 4th. I was told to watch the mail for a packet explaining what to do and where to go the day of the surgery. The holidays passed quickly and before I knew it it was already February. The last few weeks leading up to his surgery were high stress. I found myself crying and anxious most of the time. I wanted to get it over with, but didn’t want it to happen at all.

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On February 3rd my mom and I headed to Utah. We spent the night at my moms cousins house and woke up bright and early on the 4th for Ollie’s heart cath. This first surgery would be minor compared to the open heart surgery to follow. Oliver wasn’t allowed to have any food after midnight the day before his cath and OHS. He was allowed to drink pedialyte until 8 am the morning of though. He didn’t like it much so we got to deal with a fussy baby for a few hours.

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The purpose of the heart cath is to check out how the heart looks and to give the surgeon an idea of what to expect for the major surgery. They go in through the groin and snake their way up to the heart. After the cath was complete I was paged and told to head down to the post surgical room. There were many children in there just waking up from anesthesia. Oliver was pretty out of it when I got to him. It terrified me to see him so…..blank. It took him quite a while to wake up. We were moved to a room and had to wait for a few hours. Ollie had to sit completely still during this time. When he finally started to wake up I had to stand by his bed and hold his legs down. The fear is that they will start bleeding heavily in the spot they went through on his groin. He perked up after 4 hours or so and we got the go ahead to go back to the hotel.

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David and my dad arrived the following day and we spent time with David’s family as well. Oliver was able to receive a priesthood blessing that night as well. We stopped Oliver’s feeds and wiped him down with the pre-surgery cleansing wipes. We had very specific instructions on how to bathe him.

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He was again allowed pedialyte all night but he hated it. All he wanted was a bottle of milk. We woke early on February 6th and headed to the hospital. Ollie was weighed and prepped for surgery. He got the cutest little hospital gown to wear.

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We waited in our hospital room for his surgeon. He came in and went over all of the risks that we could expect. I can’t remember any of them but they were bad. After meeting with him the anesthesiologist led us to the surgical wing. We were allowed to kiss Ollie and give him one last hug, and then the doctor took him. I watched him walk away and I didn’t feel completely helpless. I was scared, but there was a calmness that I felt. David and I walked hand in hand to the surgical waiting room and took our seats. We would be there for a few hours so we got as comfortable as we could. 6-7 hours later our surgeon came into the waiting room. He told us it took quite awhile to get started because there was so much scar tissue to get through. I was in awe at how tedious and delicate his job must be. He said Oliver did well and his heart function looked good.

We were able to see him an hour after that and he looked pretty rough. He was puffy. He looked really uncomfortable and would open his eyes and squirm a lot.

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David and I camped out in one of the parent sleep rooms that night. As always it was hard to leave Ollie there but after an exhausting day it is all you can do. Luckily recovery was quick and we were moved up to the “floor” the day after surgery. The hardest part now was managing his pain. He was given oxycodon and tylenol around the clock. David and I were in his room 24/7 from now on until we got to go home.

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A few days after surgery Oliver blew out one of his IV’s. I panicked because I did not want him to get poked for the hundredth time. They called in the IV team and they were there in minutes. I was devastated. He was finally peaceful after a long day of restlessness. I silently pleaded with my Father in heaven to not let Oliver feel anything when they put in his IV. I closed my eyes and held his hand as they pushed the needle in. It was not met with the usual scream. Instead Oliver acted as if he felt nothing. My prayers aren’t always answered in such a way, but I was so thankful it was that day. Heavenly Father knew Ollie and I could handle it, but I am so grateful he didn’t make us.

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Bringing Home Baby

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Bringing Oliver home was SO scary. I was terrified he would break at any moment. He had a feeding tube and oxygen on him at all times. It felt like we were confined to a small space. I hated having cords connected to him all of the time. It was very frustrating trying to console a child that had a lot of “baggage”. David and I were both so exhausted. I started back to work immediately and worked opposite Davids school schedule. We could not take him to a daycare for fear of getting sick.

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My sister Abbie bought us a gigantic bottle of hand sanitizer and we became germaphobes. We washed and sanitized multiple times a day. We did not take Oliver out anywhere! We were warned when leaving the hospital that a cold or flu could land us back in the hospital. David and I would alternate weeks at church so one of us could stay home with Ollie. We did this for 6 months. People were very respectful of our bubble and we didn’t have any boundary problems. All of my shame went out the door and I attached a little stop sign to Ollie’s car seat that said “don’t touch my hand until you have washed yours”. If I could have picked what it said I would have picked “don’t look at me or touch me”. I got advice from a heart mom friend that told me about the “3 cough rule”: If some one around you coughs 3 times you leave. We had to take precautions like this because he was so susceptible to getting sick. I don’t regret being crazy at all! We managed to keep Ollie from getting sick! He didn’t even get a sniffle until he was 7 months old. We managed this with lots of hand sanitizer, soap, being hermits, breast milk, and lots of help from heaven!

Oliver started getting Synagis shots right when we got home since we were in the cold months of the year. Synagis is a shot to prevent RSV. Babies that are premature or sick (like Ollie) receive these shots once a month for the first two cold seasons of their lives. The dosage is based on weight (and so is the price) so I would get a call from the clinic a few days before his appointment and I would report his weight for the day. The shots are EXTREMELY expensive but worth every penny. The shot is large and painful. He was not a happy boy when we left those appointments.

We saw a doctor at least once a week if not twice. We had a home health nurse see him twice a week. We weighed him every morning and administered his medications. I would get a call from primary children’s every week and I would report Ollie’s weight and how much he was eating at each feeding. I stressed like no other each week before the call. I was scared that he wasn’t gaining enough weight. We recorded each feeding in his medical binder. Each bottle was a concoction of breast milk, bananas (for thickening), and formula for extra calories. I was pumping 4 hours a day at this point. Life was crazy but good. Oliver decided to rip his feeding tube out a week after being home. I made the executive decision to leave it out and we just did bottle feeds. It had the potential to be a risky move but David and I decided we would at least try it out. Luckily he started eating enough by mouth and we were able to leave it out. We scheduled another swallow study for a week and half away and thickened his milk until then. He passed his swallow study with flying colors this time. We were able to stop thickening with bananas. Now we mixed breast milk and formula and that was it!

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We landed ourselves back in the hospital 3 weeks after being home. Ollie’s incision looked red and inflamed. We were admitted to EIRMC and he was given an IV of antibiotics. Our pediatrician came to see Oliver and informed us that he just got off the phone with Primary Children’s and they wanted us down there immediately. We panicked just a little and ran home to pack. I called the spa and had my appointments moved.

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We stopped in Blackfoot and had a priesthood blessing….cried a little….and then sped to Utah. We weren’t sure how bad the infection was. We were told that they may have to open his incision up to take care of it. It ended up just being a stitch abscess and we only had to stay in the hospital for 6 days. We had a scary moment during this hospital stay. While changing Oliver’s diaper I noticed blood in his stool. I immediately broke into tears. Blood in the stool is a sign of the infection called Necrotizing Entercolitis. This would mean an extremely extended hospital stay and possible bowel surgery. It is an infection we definitely wanted to avoid. David immediately gave Oliver a blessing and we said a heartfelt prayer that Oliver would be okay. I reported the incident to the nurse and she called the on call doctor. They ordered an xray. It would happen around 3 am. David and I were very anxious. We asked our families to say a special prayer for Ollie. The xray came back clean. Oliver’s bowels looked perfect. We were so relieved. They ordered one more xray for the following day just to be certain. It again came back clean. We were overwhelmed with gratitude that he did not have NEC. The team of Cardiac doctors chalked it up to a dairy sensitivity. I was given the choice to continue pumping and cut ALL dairy out of my diet…..or quit pumping and give him non dairy formula. I felt very strongly that he needed breast milk and I went cold turkey dairy free that very moment. I had to “pump and dump” for the next week because the milk I produced would contain dairy. Meanwhile he was given an extremely expensive formula that he HATED. We tried a few others and he finally settled on a soy formula. David had to head back to school so I stayed with Ollie and prayed that we could go home soon. Money was tight and I needed to get back to work. Luckily our stay was short and we were able to resume our new normal life.

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I believe we were given a miracle that night in the hospital when we thought Ollie had NEC. We may never know. I do know that I am thankful for the priesthood. I am thankful for prayer. It is real. It is powerful. It is healing.

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I finally got to hold my baby

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I finally got to hold my baby. He was 9 days old. I look back on this experience with fondness. I admit that I felt robbed of normalcy with this birth. I would have loved to hold him and look at him right after he was born. I would have loved to have taken him home a day or two after he was born, I would love if he wasn’t sick…..but as soon I say these things I immediately feel a pang of guilt because I am blessed beyond words to have this boy here with me today.

As I reflect on our heart journey and those days following Oliver’s surgery I am at a loss for words. Our journey was easy compared to most. We had few complications and struggles. I have tried to compose my next blog post about the recovery stage before we came home and I cannot seem to come up with anything. I have seen much heartache in the heart world during our short 11 months of officially being part of it. I have seen much heartache even in the past 3 weeks. I cannot stress the importance of hugging your children tightly, often. Hold them, kiss them, and spend time with them. Thank your Father in Heaven daily for letting them be with you still. Life is so precious and can change too fast.

I am reminded every day of just how thankful I am that our journey was quite easy. After Oliver’s surgery he stayed in the cardiac intensive care unit for one week and was then moved up to the third floor and stayed there for a week and a half. During our time up one the “floor”, we learned how to administer his medication, learned CPR, proved we could reinsert his feeding tube, and got to be his parents. I felt exhausted and overwhelmed, but thankful that all was going well.

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With a feeding tube you can have what they call a continuous feed where they get small amounts of food constantly, or bolus feeds where they feed a large amount every few hours (which is how you and I eat). The transition from continuous to bolus was hard. Oliver would scream for hours as his belly was adjusting to the new feeding schedule. In order for Oliver to get the feeding tube removed, he had to pass a swallow study. In the swallow study he had an x-ray while ingesting barium. I was so nervous for his first swallow study and said many prayers that he would pass it. I selfishly didn’t want to have to deal with the pain of a feeding tube and oxygen when we brought him home. I put on my apron in the x-ray lab and watched as he failed his first study. He aspirated on the liquid and was still doomed to have the feeding tube. I had fought to get him his first swallow study and was sad that I had possibly made the wrong decision. The one bright side to the whole situation was that he successfully swallowed a thicker substance that they call nectar thick. This meant that we could give him small amounts of thickened milk so he could practice eating. Over the next few days we diligently tried to feed him by mouth with the assistance of a speech therapist before each bolus feed. He hated it and was too tired to eat. We thickened his milk with a powder called Thick It. We were given permission to try baby bananas as an alternative to Thick It. The enzymes in the breastmilk break down rice cereal too fast so Thick It and bananas were our only option. He LOVED the bananas and we were so thankful. We started with 10 ml’s and gradually worked our way to an ounce. I was determined to work hard on feeding by mouth because I felt that the doctors and nurse practitioners were not pushing as they should, and that Ollie would be going to kindergarten with a feeding tube. I now know that this was nonsense and that I was being crazy.

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The nights were long as we tried to sleep in the hospital with a nurse or tech in his room every few hours. We slept on a small couch each night. A few nights we left the hospital and stayed at my moms friend Michelle’s house. It was extremely hard to leave Oliver but necessary. We were so tired. When we stayed at the hospital,  David and I would take turns holding Ollie, feeding him, and changing his diaper. This time was hard because we were trying to manage his pain. He went from morphine, to oxycodone and tylenol. We were tired and anxious to get back to the comfort of our own home. Each day we were told we could possibly go home in a few days. It was very frustrating, but we trusted that they had Oliver’s best interest in mind.

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On Halloween day we were finally given the clear to go home. We were very anxious and excited. The day was spent cleaning up our room that we had been living in, getting oxygen ordered from a home health company, getting in touch with a home health company in Idaho to meet us as soon as we pulled into town, and learning about the High Risk Clinic. The high risk clinic was a program Primary Children’s started to lower the mortality rate of young HLHS patients between their first and second surgeries. Each day we were to weigh Oliver and write it down in our binder, record the medicine we administered to him, and record how much he ate each day. We were told the importance of keeping him away from the world. We were to keep him indoors and away from human contact as much as possible. These heart babies are very prone to respiratory infections and sickness. We should wash and sanitize constantly. Oliver would need to see his pediatrician within one week of being home, and then seen once a week until we got the clear to make it longer. He would see his cardiologist in one months time. We were to feed him whenever he wanted food. It felt like a huge weight was put on our shoulders at the time. If I can give any advice to the parents of sick children at this very moment….it would be to relax and calm down. You will get the hang of all of it and it will be your normal. That day at the hospital we learned how to hook up an oxygen tank. I was so terrified the thing would explode. Luckily it didn’t and we survived the oxygen ordeal.

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Halloween day at the hospital was full of fun! That morning all of the children were invited to pick out a Halloween costume and they then got to trick or treat and play games. Ollie didn’t dress up, but he got his picture taken and put in a cute little pumpkin frame (I laugh every time I look at it cause its so cute).

After a few long hours we were finally able to leave. We left the hospital carrying a scale, feeding tube supplies, an oxygen tank and supplies, diapers, thick it formula, and our most prized possession…Oliver! He got to wear clothes for the first time in his life at 2 1/2 weeks old. He practically disappeared in the car seat when we put him in there for the first time. When we walked out of the hospital some one was playing a beautiful song on one of the grand pianos. I felt overwhelming gratitude that we were walking out those doors with our baby that day. I hear this song every so often on my pandora station and get that overwhelming feeling all over again. I remember vividly riding down the elevator and loading Oliver into our car. It is a special moment in our lives that I will cherish for as long as I live.

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Here is the song- River Flows in You

Tytan’s Story…..Written by Teisha Walker

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“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.

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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.

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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.

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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.

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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.

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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.

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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.

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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!

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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”

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A Sacred Day- Preface to “Tytan’s Story”

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October 20th

David and I attended sacrament meeting today. They hold it right here at the hospital. It was one of the most spiritual church meetings I have ever attended. It is so humbling sitting in a room with people that are going through hard (if not the hardest) trials of their lives. I am so thankful for the people that dedicate their time to serve there. This trial in my life has truly opened my eyes to others and their situations. Little Oliver’s situation doesn’t seem so bad compared to what others here are facing.

There is a sweet little family that has passed our room here a few times. They are pulling their little boy in a wagon. I recognize the mom. She is part of the Facebook heart group I am a member of.

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This family is the Walker’s. Teisha, this young boys mother, has become some one I really look up to. She doesn’t know this, but her story has touched my heart, and these pictures are forever ingrained into my mind. Teisha kindly agreed to share Tytan’s story here on Oliver’s Twist. Their story is one of great faith, courage, and heartache. Read about it in the following post titled “Tytan’s Story”.

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