Ryan's long journey...
through his Mommy's eyes

Ryan's journey has been very long even though he is only 9 years old. As parents, Jim and I also endured this experience and have our own perspectives on what happened... This story is taken from a journal I kept while Ryan was in the hospital and shortly after he came home. This is the my story, my experience with Ryan's Congenital Heart Defect. I hope that my journal can somehow help another "heart mom" get through what I remember as the most difficult yet rewarding time in my life.

The worst night of my entire life?… It’s a toss up between two horrible nights… How do you decide which night is worse when your choices are; 1) the night your son was born with a life threatening heart defect; or 2) the night before your son’s surgery to correct the heart defect with the prognosis for surviving the surgery only 50%…

It wasn’t until shortly after my son, Ryan, was born August 23, 2000 that I heard the term “heart mom”. I received an email from another mother whose son was born with a heart defect that read, “Being a Heart Mom is tough, but you’ll become a much stronger person for it.” She read Ryan’s traumatic birth story on Baby Center’s August 1998 Babies Bulletin Board. The August 98 Board was a place I visited daily to share the trials and tribulations of my eldest son Jake, who was born in August 1998. My anticipated “healthy” son Ryan was born with the congenital heart defect, Transposition of the Great Vessels. Suddenly I had a heart baby and I was a heart mom. I felt thrust into a reality that I didn’t choose or understand, yet was willing to beg God for the peace and acceptance I suddenly needed to get through it. This is my story. Writing it is a way for me to express my feelings, come to a better understanding of why this happened to my family and learn to go on, as a better person for all I have gone through with my family. I hope that my story can somehow help another "heart mom" suddenly pushed into the same reality. Looking back now, I wouldn’t change the experience for anything in the world.

Ryan’s birth
Trust your instincts”, that is something I will do from this day forward. Ryan was born after a very easy 3 hour labor. Jim’s mom Cheryl and my sisters Joan and Julie were in the room for the delivery. The instant I held him I knew something wasn’t right. It felt as if he was not content. He screamed and didn’t seem to like being touched. My instincts told me that there was something wrong, but in the euphoria of the moment, I let the feeling go. Less than an hour later, after everyone had a chance to hold him and take pictures, I was alone in the room attempting to breastfeed. Ryan had absolutely no interest at all. He was purple and still seemed uncomfortable in my arms. We were told that he was purple because he had been born so quickly, causing bruising...

The Diagnosis
I was checked into my own private room an hour or so later. Ryan was taken to the nursery for a “routine” check-up, or so I was told. What had actually happened was my nurse thought his coloring was off and took him to the special care nursery to be checked out without alarming me. It was a couple of hours later when I was visiting with my friend, Stephanie, that I realized he had been gone a long time and asked Jim to go check on him. When Jim came back he told me that Ryan was being observed because of his coloring and it was nothing to worry about. Honestly, I wasn’t worried at all until Stephanie looked up at me and said, “Did your heart just sink a little bit?” Then it suddenly sank in that something was definitely wrong. Stephanie left and I was alone. Jim was attempting to find out all he could about Ryan’s situation.

I started to feel a panic come over me. About an hour later Jim came back with a couple of doctors. I was told that Ryan was not pink, but purple. “Blue Babies”, as they are called, usually indicate a lack of oxygen to the body. But they had not found anything wrong with Ryan’s lungs. No one was sure what was causing the blueness, so we were urgently asked to sign a waiver to release Ryan so that he could be taken directly over to CHOC to be checked out further. As I was signing the forms, I was told it could be a problem with the lungs or the heart and that CHOC was the best place for them to find out what was wrong with Ryan.

As they were all leaving my room, I suddenly remembered my ultrasound results. Just 2 weeks before Ryan was due Dr. Chiu, my gynecologist, told me there seemed to be a shadow on Ryan's heart in the ultrasound, but assumed it was nothing and did not order an echocardiogram to further check it out. (At the time Dr. Chiu revealed this news to me, I remember being very upset. My instincts told me back then that something was wrong. I went home upset and discussed it with Jim. At that point it was too late to do anything but wait for Ryan's birth.) I gave Ryan’s doctors this information. They told me it could very well be the heart then and decided to first do an echocardiogram on Ryan over at CHOC ASAP. Jim assured me he would stay with Ryan as they all rushed out of my room and over to CHOC via the basement tunnels that connected St. Joseph’s with CHOC.

I was alone in my room again and scared to death. I didn’t know what to do, who to call or if I just wanted to be alone. I was shaking and felt numb. I tried to call my sister, Julie, when I got her machine I just hung up. I just sat there in my bed stunned. Then, I tried to call my mom. The line was busy and I was relieved… what was I going to say? I didn’t know anything. Julie called back and before I even knew how upset I really was, I told her there was a problem with Ryan, maybe his heart or lungs. I was in tears. She told me she would pick up Brandon, her son, from football practice and come right back to the hospital. Next I called Terry, my then 2 year old son’s daycare provider (also a longtime family friend), and asked her to keep Jake overnight.

My mind was racing, I felt a bit lost inside. Nurses came to check on me. Mrs. Brown, mom of an old friend of Jim’s that worked in the hospital, came to reassure me that they were doing all they could for Ryan. The more that people came in to “reassure” me, the more real the situation became making me scared to death.

Arriving back at the hospital, Julie and Brandon came into my room just a couple of minutes before Jim walked in looking as if he had been crying. Following Jim were 3 doctors, Mrs. Brown, 2 nurses and a chaplain. Julie asked Jim if she and Brandon should leave, and he nodded his head yes. I instantly felt panic. I knew bad news was coming but was not prepared for how bad it was going to be. Jim tried to put a yellow CHOC band on my arm before telling me anything. His silence scared me and I told him to just tell me now what was going on. Mrs. Brown had a box of Kleenex in her hand for me, yet no one spoke for what seemed like an eternity. The impending news was killing me.

Dr. Kukreja, head of Neonatology at CHOC, sat down next to me and opened up a book with diagrams to help me understand. Ryan had a problem with his heart… it was called Transposition of the Great Vessels (TGA)… The book showed diagrams of a healthy heart and a heart with TGA. He was very clear in his explanation of the facts. Although I completely understood the problem, I was in utter shock and disbelief. He spoke slowly and matter-of-factly. I could feel his empathy and compassion for the situation he was telling me I was facing. There was too much information I was being given to even begin to process it all… I was told that Dr. Berdjis, Medical Director of Cardiology and Medical Director of Cardiac Catheterization Lab, was performing an emergency procedure on Ryan at that very moment that would sustain his life so that he could get strong enough for open-heart surgery as soon as possible. I felt like I needed my mom beside me to be the parent in this situation. I was too young to be going through this… when did I become the adult?

Before I even realized it was happening, tears started streaming down my face. Every word being said to me was just so unbelievable. The room was silent. Jim held my hand tight and tried not to cry. I tried to hold myself together, but sobs were following the tears. I was attempting to be silent so that I could hear the rest of what was being said to me, but I was painfully aware that all eyes were on me, waiting for my reaction, wanting to help, unsure of what to do.

Dr. Kukreja went on to explain that this heart defect was rare. The odds that Ryan would not survive the surgery were slim. With those words, I tried to hold in my sobs but it wasn’t possible. I knew that I was just told that “odds are that Ryan would survive the surgery” but what I heard was that there was a chance he could die. DIE – that concept had not even entered my mind until that moment… then without thinking, these words flew from my mouth with such anger I hardly recognized my own voice, “What about the fact that first Dr. Chiu told me that odds are that the shadow on the heart is nothing. It WAS something!” “Odds are”” that this heart problem wouldn’t happen to us because it is so rare. It happened!” “How can I possibly think, odds are my baby might live when odds are he could die from this surgery!

I was very upset and was uncontrollably sobbing at that point. Everyone tried to make me feel more positive, but I had lost it. Dr. Kukreja calmly asked Jim if he would like a minute alone with me. Jim said yes. Once everyone left the room I grabbed Jim and hugged him tight. We both cried. I asked him through my tears, “what are we going to do?” and he responded, “I don’t know”. It was the saddest moment of my entire life. I felt utterly defeated. My poor little precious newborn baby boy was in surgery for a problem we had no idea he even had until an hour or so earlier. I just wanted to die right then and there. My heart felt like it had been ripped out of my chest. I sobbed and sobbed. Finally, I asked Jim to go get Julie and Brandon so we could tell them what was going on. I knew they must be as panicked as I was to see all of those people come into my room with their somber faces.

The Aftermath
My niece and nephew, Melissa and Michael, showed up with gifts for Ryan. They didn’t know anything was wrong yet. I’m sure that my tear stained face made them feel uneasy. Their initial joy of my having Ryan really helped me to feel better, although I could tell they felt guilty for being so cheerful. I DID just have a baby and THAT IS a reason to celebrate and be happy. I tried to be as cheerful as I could be. Julie, Melissa and Jim tried to get in touch with family members so that no one would show up at the hospital not knowing that Ryan was over at CHOC. Unfortunately they didn’t get in touch with everyone.

Around 7pm with the help of our nurse, Jim wheeled me over to CHOC via the basement tunnel to see Ryan. I was very anxious to see him since he was taken from me so suddenly. I didn’t have much time to spend with him before he was suddenly unreachable. I never even got to see his chest free of scars.

When we arrived in the NICU Dr. Berdjis was just finishing the emergency BALLOON ATRIAL SEPTOSTOMY performed on him to help regulate the flow of oxygen through the body until open-heart surgery could be performed. As the curtain was drawn back, I saw him laying there very puffy, hooked up to many different machines. The site of his tiny body on the table virtually lifeless thrust me even further into the shock of the moment. I wanted to hold him so badly.

Dr. Berdjis sat in Ryan’s room with Jim and I and explained the procedure he had just preformed on Ryan, the need for the next surgery, the basics of having a child in the NICU, etc… I stared at Ryan’s little body as I tried to listen, but retained nothing. Thank God Jim heard and retained all of the information for both of us. More tears came when we were told how long Ryan would have to stay in the hospital. Most likely 2 weeks. Worst-case scenario, 6 weeks. It was horrible. I felt like I was in a nightmare. I wanted to stay with Ryan, but I was forced to leave… A perfect labor and delivery followed by this horrible nightmare. I knew at that moment that God had given me an easy labor and delivery because he knew I needed my strength for what lay ahead.

As I was being slowly wheeled back to my room, my sister Mary and her husband Ron were coming down the hall towards us. We tried to tell Mary what was going on before she panicked at the site of my red puffy eyes. We told her what happened with Ryan and she started crying. I know she was trying not to cry, but honestly, it was comforting to me to see others feel the need to cry. I needed it. I needed to know I wasn’t the only one breaking down.

As we all sat in the room talking, my mom called. She was in tears. She told me how much she loved me and how sorry she was, etc. I hadn’t heard her that upset in a really long time, if ever. Later she told me that she felt terrible for crying to me and not being strong for me. In reality, I was so happy to hear her be herself and not pretend to be strong. It actually helped me know that she was there suffering with me. It was a great comfort to me. I wanted my mom there with me so much, but she was very sick with cancer and not able to be there physically with me. It was tough. Stephanie called to see what was going on. She expressed her sympathy as well. So much sympathy, I just wanted to be happy that I had a new baby boy… but happiness was not an emotion I would feel for quite some time.

Suddenly I was alone in my room. Everyone left around 9PM. I wanted Jim to stay. He was encouraged to spend the night with me, but he needed time alone to think. I felt so restless. I turned on the TV and tried to get my mind off of Ryan. It didn’t help. I heard other mothers with their babies crying in nearby rooms. I longed to have some time to get to know my newborn baby. I had anticipated his arrival for 9 months, just to have him taken away suddenly… I never even got to see his perfect newborn body free of scars. I wanted to hold him so much, but was too emotional to even call for a nurse to take me over to CHOC to see him. I felt so alone. I went into the bathroom, turned on the shower so no one could hear me and sobbed uncontrollably for what seemed like forever. I had never in my life felt such despair, so alone or so totally drained. As I crawled into my hospital bed at 11:30, I felt like a shell of the person I was just a day earlier.

After hours of unsuccessfully trying to sleep, I pulled out my video camera and watched the entire tape of Ryan’s birth. It was the only way I could get close to my newborn baby and I missed him so much. I prayed to God to somehow give me peace and acceptance. I asked for it over and over again. It was like a mantra I was chanting constantly in my head just to get me through the longest night of my life. I just wanted the to feel that I was capable of handling whatever was being tossed my way. I needed God to get me through that horrible night. Sometime after 4am I finally fell asleep praying.

Ryan’s 7 ½ week stay at CHOC - August 24th - October 11th
Jim brought Jake, our then 2 year old son, to meet his new brother the next morning…entering the NICU was surreal. Everyone entering the NICU was instructed to remove all jewelry, including watches and scrub their hands and arms 3 minutes before entering. When you turn the sinks on, they literally stayed on for 3 minutes so that you completely follow the rules without fail. The lives of the babies in the NICU depend on it. Children (only allowed in if they are a sibling and ONLY in grave situations) must wear masks at all times. Getting the mask on Jake was an ordeal in itself. It was horrible trying to pretend that all of the tubes and medical paraphernalia was normal for Jake’s sake. I tried to remember that he had never had a new brother before, so as far as he was concerned, this was completely normal… if we could just portray it that way. Jake was a little scared at the site of Ryan with so many iv's, but he tried to act like it didn't bother him. It certainly made me wonder what affect this entire ordeal would have on him emotionally.

The day went on with many visitors coming to see Ryan in the NICU, trying to put on a brave front, and bouts of crying when I thought no one was looking… it seemed endless. I stayed an extra night at the hospital. I just couldn’t bear to leave Ryan yet. Jim stayed with me that second night and the comfort of having him nearby enabled me to sleep into a deep sleep that was very much needed.

Two days after he was born, I finally got to hold Ryan for 10 minutes. Then, he was again taken away for another echocardiogram to view his arteries and assess the complication of the surgery ahead. The hardest part for me was seeing tubes throughout his body. He had tubes in his mouth and nose and 2 IV’s, one on his hand and one on his foot. At first he had tubes going through his umbilical cord, but they were backing up into his liver so they removed them and put the 2nd iv in. He actually looked healthy, aside from the tubes. He was not conscious and had not been since just after birth. He was sedated so his little heart didn’t have to work too hard until after the surgery.

Looking at him, so innocent and brave, I felt in my heart that everything would be ok. I have always believed God only gives us what we can handle, so I knew I could handle this. Finally, the peace and acceptance I have been praying for was a part of me. I suddenly KNEW that God had a plan. I felt lucky that God had enough faith in Jim and me to include us in such a special plan for our child.

With the insistence of the doctors and nurses in the NICU, I began pumping my breastmilk and storing it at the hospital for Ryan. I was told that being a heart baby meant Ryan would probably never breastfeed directly from the breast, but that my milk was very good for him and I should continue to pump and freeze my milk every 3 hours. The pumping was both good and bad. Good because it forced me to take a half hour to myself in a quiet, dimly lit room of the hospital every 3 hours. At times the break was peaceful and just what I needed to rejuvenate my spirit. At other times, it was tough to tear myself away from Ryan’s bedside when it was time to pump. I was on a roller coaster of emotion with no end in site…

There were so many blessings that have come out of this ordeal. Many people, friends, acquaintances and people I had never even met, offering to help. So much love and support that I was overwhelmed. There were times that I felt so loved, even though my world is falling apart.

August 26th
I was able to spend a lot of time with Ryan, even getting to hold him for 2 hours. Finally off the respirator and some of the medications, he finally began to show signs of life. Although we had longed for him to show us that he was somewhat like other babies, it was a mixed blessing to have him so alert. It made leaving him at the hospital virtually impossible. He started cooing and staring into my eyes, as if he recognized me and was happy to see me. I began to feel the pull between Jake at home, and Ryan in the hospital. I wanted to be both places at once. The guilt and the stress was really getting to me.

August 28th
God never gives us more than we can handle… right? I prayed that those words I always use were true. On August 28th I was pretty close to my breaking point, unsure of how much more I could take. Again, if I had listened to my instincts, I would have known this news was coming. We were supposed to have a meeting on Friday to discuss Ryan’s surgery but it was postponed until the following Monday… I felt something was wrong. Dr. Gates and Dr. Rebolledo were discussing Ryan's echocardiogram over and over, and contemplating the surgery options for 3 days while we waiting to hear from them... Finally, we met in a small private meeting room in the hospital.

Jim and I met with the Dr. Berdjis (Head of Cardiology), Dr. Rebolledo (Ryan’s Cardiologist), Dr. Gates (Pediatric Heart Surgeon & Medical Director of the Heart Institute), Patty Sheehan (Cardiac Clinical Nurse Specialist and longtime family friend), and a chaplain to discuss Ryan’s impending surgery. Patty extended a box of kleenex to me... The news was absolutely horrible. Just when I was finally feeling hopeful that Ryan would be ok, a bomb was dropped on us. We were told that Ryan’s surgery was MUCH riskier than previously thought. His heart's condition was even more rare than most TGA cases. Basically his chances of surviving surgery went from 85% down to a 50/50 chance of surviving. Dr. Gates said he had not seen a heart formed like his in over 8 years and they weren’t even sure that the repair could be made.

When Dr. Gates finished speaking, silence filled the room. More tears started forming in my eyes… I felt like every little thing sent me into tears. I hated myself and just wanted to be strong enough to listen and understand our options. Surgery was set for Wednesday, IF we opted for it. It was risky. We needed to make choices… Surgery was our best option…but they wouldn’t know if there was really any repair that would work until they opened Ryan's chest. Shock began to set in again. Jim had his arm tightly around me. Earlier on the drive to the hospital that day Jim and I were talking about how we felt so positive and that we just KNEW Ryan was going to be ok, just before the meeting. The news we were hearing was so unexpected.

It got worse... (we didn’t want to tell anyone about this for fear of being judged for the decision we had to make.) We were given the option of putting Ryan on the list for a heart transplant if the surgery wasn't successful. My first thought was, “Of course we want every chance for Ryan to make it!” There was absolutely no question about it. Then, watching the faces of the experienced professionals explaining the options, I realized we had NOT made the decision they were hoping for. “There is just so much you can expect an infant to go through before it’s cruel to put them through anymore, Cathy”. Those words are imbedded in my mind. My mind was racing and I wanted to scream – “WHAT DO YOU MEAN? THERE IS JUST SO MUCH YOU CAN EXPECT A MOTHER TO GO THROUGH!” Through my tears I asked what a heart transplant meant for Ryan’s future. We were told "Years of struggles, waiting for possible rejection, on a list for another heart by his 10th birthday, then his 20th, and so on…. Transplanted hearts only last so long. Odds of another heart becoming available are slim to none, chance of losing Ryan at 10 in a hospital bed awaiting a donor heart. Even if he got a heart, chances of living a long life with a donor heart are very slim as well. The worst part was that he would be kept alive on a ventilator until a donor heart could save his life… it could be days, months, YEARS!" There was just so much we could expect Ryan to suffer through, they were right. I remember asking, “Are you saying another baby will have to die, just for my baby to live?” I heard a faint, "yes"...

Suddenly, the only thing that made sense to us was to donate Ryan’s body (everything but his heart) to other babies waiting for their lives to be saved. We decided NOT to be placed on the transplant list, but instead signed waivers donating any part of Ryan that could save another child if he did not live through surgery. No parent should ever have to make the choice Jim and I had to make that day. It was a decision we could have lived to regret for the rest of our lives.

That day and the day after I did not leave Ryan’s side any more than necessary. If I only had 2 more days with him, I wasn’t going to waste them. In fact, Dr. Rebolledo asked me NOT to leave the NICU those days because my holding Ryan to my chest had a calming affect on him. He melted my heart lying on my chest all day. He didn't have his respirator or any tubes in his mouth and the IV they had in his forehead was gone. He seemed so normal and sweet. I was in absolute heaven for an instant.

It was such a difficult time. I felt so lost. I wanted to talk to my mom and hug her. I needed her support so much, but she was so sick with breast cancer we all thought it was best that we didn’t worry her about Ryan. She has no clue how serious his condition was. The night after finding out Ryan had a 50% chance to live I was driving home from the hospital and just drove to her house. I parked my car across the street and just cried like a baby. I was losing my mom to breast cancer and my son to a heart defect… How could I lose my mother and my child at the same time? I had never felt so sad. I truly believed that this was all part of God's plan and I wasn’t angry, just overwhelmingly sad.

The day before Ryan’s surgery, out NICU nurse helped us to take Ryan’s footprints, handprints and a lock of hair. We also had him baptized. It was a tough day. I held Ryan all day and silently prayed that God would grant him a successful surgery. I remember he has an IV in his head because they had blown too many of his veins, that they didn’t have another place to put an IV. I wanted to stay at the hospital with Ryan all night but Karen (Ryan’s NICU nurse that was always with him) encouraged Jim and I to go home and spend the evening together. Terry kept Jake and Jim and I ordered a pizza and had a bottle of wine. I felt utterly defeated. There was not an ounce of hope left in me. I couldn’t even pretend anymore. Jim and I talked for a while. He was very hopeful and still so sure that Ryan would be ok… I couldn’t share his positive attitude. For the second time in my life I felt such deep despair that I couldn’t pull myself out of it. Jim got angry with me for not believing in Ryan. I just didn’t have any hope left. I was completely drained at that point.

August 30th
Jim and I arrived at the hospital before the sun was up. We wanted to be there to walk with Ryan through the tunnel to St. Joseph where his surgery was taking place. In the hour we had before he went to surgery, I held him and told him how much I love him. I kissed him constantly and tried to memorize every inch of his beautiful face, fingers, toes… I put him back into his bed and the journey through the tunnels began. It was the toughest walk of my life. When we got to the doors of the operating room, there were several nurses, doctors, Dr. Rebolledo, Dr. Gates, Patty Sheehan and the anesthesiologist waiting for us. Ryan was picked up out of his bed and handed to me for one last goodbye. I knew it might be the very last time I held him. I whispered in his ear, “Mommy loves you always” and with that, I broke down in tears. I couldn’t stop. The anesthesiologist took Ryan from me and they disappeared through the double doors. Patty put her arm around me as did Jim… Jim and I just hugged and cried for a few moments together in the hall. It was horrible.

The waiting was long, although I think I was pretty numb at that point. I don’t remember wanting to eat or do anything. I just wanted to sit and do nothing. I had no hope, I had no feelings, I was like a zombie in somebody else’s body. After 2 unsuccessful attempts at coming off the heart bypass machine, Dr. Gates moved the artery that he had moved originally up higher, not expecting it to work but it did! The third try Ryan was able to come off bypass successfully.

We went in to see Ryan in recovery. I was prepared for the worst since I knew his chest was open and would remain open for the swelling to go down. I was still numb. I didn’t believe Ryan actually was still alive until I saw him after surgery. There were tubes and IVs everywhere – I didn’t care. He was alive!!! ALIVE! There was no greater joy that I had ever felt in my life then the joy I felt knowing he had made it.

Throughout all that was going on around us, there was another part of my life that was falling apart. My mom was in the late stages of breast cancer and was not doing well at all. We didn't tell her about Ryan until after his surgery because we didn’t want to upset her. When I finally saw her after Ryan’s surgery was a success and she had been told the seriousness of the situation, she hugged me and cried because she felt so bad that she was not there for me during this nightmare. What a special person my mom was, she was worried about supporting me when she was barely hanging on to life herself.

This sounds horrible, but at the hospital when Ryan was in surgery and my family was all gathered waiting on news about Ryan my sisters were talking about my mom's health. (Which I completely understand was normal since my mom was so sick and I was NOT mad.)

I had to walk away and not listen because it was just too much for me to deal with. I couldn’t let myself even THINK about my mom with all that was going on inside me already with Ryan. I felt horrible not being able to deal with my mom’s sickness, but I was at my breaking point and really was afraid I couldn’t take much more. My concentration had to be on Ryan. I tried to remember that my mom has had a long life and lived longer than we ever thought possible with her cancer. At that moment Ryan's little 7 day life was taking over my entire existence.

September 1st
Ryan’s chest was closed at 2:30pm, one to two days ahead of schedule! We were so pleased with his progress the last day. His blood pressure dipped 2 times, but then went right back up. He never got all puffy like they thought he would from the fluids in his body. At 9:00pm he was moved to the PICU (Pediatric Intensive Care Unit).

During all of the turmoil at the hospital, support from family, friends and people we didn’t even know continued to shower us daily. Every day gifts would arrive for Ryan and even Jake. Ryan received many lambs which symbolized the fact that he was a little lamb of God. My Baby Center August 98 Bulletin Board Moms had ALL of the Baby Center Boards praying for Ryan… Just signing on the website was overwhelming. The Baby Center Mom’s have continued to be some of my closest friends to this day (and I have met in person many of them although they live all over the world.) Family, neighbors and friends brought food to our house, offered to do laundry, clean our house, run errands… it was unbelievable. I had never felt so blessed in my life.

The hardest part was trying to make Jake understand it all. At 2 years old, he was smarter than most at his age and understands far more than I wished he did. He was actually doing very well despite all that was going on around him. He was very loving and sweet to everyone, doing whatever we asked him to do with no problems at all. No biting, hitting, pinching or aggressive behavior at all (which had previously been a problem for this high spirited little boy.) I THOUGHT that his behavior was a good sign, until I spoke with the hospital's social worker and found out ONLY good when children keep up their regular behavior. The changes in Jake meant that he was going through a lot, and he was very upset internally by it all.

(Today Jake is a very special child. He currently suffers from a mild case of the anxiety when he is in unfamiliar situations or around people he is not 100% comfortable with. It’s been heartbreaking to watch him be so pained over things a child with out this anxiety would do instinctively. In the back of my mind I always wonder if all that Ryan went through has somehow impacted Jake and changed his life forever. We will never truly know if Jake’s anxiety is a result of what he went through with Ryan, but I can’t help but think it is somehow related.)

September 3rd
Ryan had his breathing tube taken out, his chest tubes and was taken off 2 of his heart medications. He was doing well, but then they had to put the breathing tube back in. I received an email from a women who has gone through this with her then one year old prior to this and telling me how common it is for that tube to come out and go back in several times. Thank God she told me that because when it happened I half expected it. I think advice from people who have walked in similar shoes is so helpful and comforting. It helps you to see the light at the end of the tunnel when you see that someone else has been through what you are going through and come through it alright. Every time some sort of “set-back” happened, I had to remind myself that I was lucky he was still HERE to HAVE THE SETBACK.

I tried to keep a positive attitude but it got harder every day to leave my precious baby at the hospital and go home at night. The weekends were especially tough for me because I found myself trying to fairly divide my time between Jake and Ryan. I felt so sad one night just before I had to leave one night because Ryan opened his eyes for the first time since the day he was born. He just stared at me for about 5 minutes. I felt like he was begging me to pick him up and make him feel secure. I really wanted to do it, but of course couldn't. When did I stop being his mom? I didn’t feel like a “real” mom to him… he had other people taking care of his every need – where did I fit in? It was so tough and just got tougher every day that passed.

September 6th
I was told that they were planning to leave Ryan’s breathing tube in for about a week. Heartbreaking since every single day we prayed that the vent would come out so we could hold Ryan and try to feed him for the first time. Every morning the doctors did “rounds” where they walk through the PICU with the interns and discussed the cases and prognosis for each child. .It was very interesting listening to the doctors’ talk about Ryan. Everyone was amazed by his progress. He started getting my breast milk through an IV earlier in the week and that made me feel better about all of the pumping I was doing. He was slowly being weaned off the heavier pain medications. This made him very alert a lot of the time, in addition making it much harder to leave him. I felt torn between Jake and Ryan. Ryan would just stare at me with his big bluish- black eyes and I was in heaven, He followed my voice all over the room with his head and eyes. I would hold his hand and stroke his hair and he seemed calm and happy. When I go to leave, he would get irritated like he didn’t want me to go. I felt such guilt.

I began to get a little concerned with my own health at one point. I just about passed out at Ryan's bedside when I tried to help his nurse fix a bleeding IV. I got hot and sweaty, then cold and clammy. Then everything went black and I had to sit down or throw up. I thought it was the bloody IV making me sick, but then it happened again two more times. The stress of the situation was really getting me physically as well as just emotional.

September 8th and 9th
The first day Ryan was awake a long time, it was for 6 hours… it was wonderful just sitting with him and talking to him all day.

Ryan had many visitors. I think most people that saw him for the first time were taken by surprise at how tiny he was, and how many machines he was hooked up to. After seeing him that way every day, I wasn’t fazed by it at all and forgot others might be. My mom came out and saw him with my dad. Ryan was alert and just stared at my mom. It was great.

Ryan was "sprinted" for a few days prior to this day and he did well. (Sprinting is when they turn off his ventilator for 15 minutes at a time and see how well he breaths on his own.) We prayed every day that the vent would come out and the sprinting helped see if he was ready to breath on his own. His ventilator was taken out at 10am but had to put it back in 5 minutes later. The scary thing was the doctors being so positive this attempt at extubation (taking the tube out) would work. Ryan was doing exactly what he needed to be doing for it to look as though he could breath well on his own. They were shocked that it didn't work. They told me that they didn't know what to do because Ryan didn't seem to be able to breath on his own and there was no reason for it. His heart was working perfectly and his stats were great. The set back was not good because of the stress on his little heart and lungs Ryan went through in those 5 minutes without the breathing tube. It would take him several days just to physically get back to the point he was prior to them trying to take the vent out.

I was beginning to think I would never see Ryan without a ventilator. I couldn’t even remember what his mouth looked like without a tube in it and tape.

Ryan’s doctors decided that they needed to perform a Cardiac Catheterization, Angioplasty and Coil Immobilization of Collaterals and THEN try to take the breathing tube out again in 3-4 days. The day before Ryan's heart surgery we were told that Ryan had Collateral Vessels on his heart. As I understood it, a collateral vessel was an extra vessels that grew on the heart searching for oxygen when the heart wasn't getting enough before the heart was repaired. In the procedure they place a catheter through his femal artery up to his heart and coil (or "plug") the ends of the vessels. That would even out the pressure in his lungs so that the heart and the lungs can work together properly without the help of the ventilator.

The complications never seemed to end…

The procedure was over and Ryan did very well. When they first started, they said that the two collateral arteries that they were going to coil seemed very small and not large enough to have caused Ryan to NOT be able to get off the ventilator. It didn't seem to be the problem, (which, in my opinion, was not the answer I was looking for.) They did finally discover a 3rd, very large collateral artery that showed up in the echocardiogram and that could be the cause of the problem. There also seemed to be a problem of too much fluid in his lungs and they are working on correcting that as well.

So there we were again, waiting for a few days to pass so we could see if coiling the vessels made a difference in Ryan’s breathing on his own… always waiting for something.

September 12th
Ryan lost a little weight and was down to 7 pounds, which the doctors weren’t too happy about. They wanted him to gain a little weight and then try to remove the ventilator again maybe in a day or two. More bad news… it seems like it never ends.

Of course, along with the let downs there was always a reason to smile when it came to Ryan. On September 12th I actually got to HOLD him again. It was the first time since the day he has the Switch Operation. What a rare treat. It had been close to 2 weeks since I held Ryan in my arms. I was in absolute heaven. For some reason, I wasn’t even intimidated by all of the medical equipment attached to him. The main thing that worried me was the ventilator down his throat, taped at the mouth. I had to be sure NOT to pull or push it. It was truly a two person effort to pick Ryan up. His nurse had to hold the tubes and vent up while I lifted him out of bed and into my arms. Then, I would slowly sit down and his nurse would strategically place the tubes and wired so that they didn’t push, pull or disconnect. After a few days it was a routine that became second nature. I could literally get to the hospital at 8am and sit there until 5pm holding Ryan. I had to leave every three hours to pump my milk and force myself into the cafeteria for lunch – most days I wouldn’t leave Ryan unless I knew he was asleep or was with a nurse I completely trusted. It was very hard.

September 13th
I got to hold Ryan again… In fact, when I got to the hospital on the 13th his nurse was holding off giving him a sedative because he was very upset when he woke up. They wanted me to hold him and see if my holding him would calm him down instead - it did! Yeah! I finally felt like a real mom to Ryan.

Ryan had thrown up a few times and had to have a tube inserted through his nose to his tummy to drain out the excess fluids. They had to stop the breast milk feedings he had been getting through his nose tube for a day and watch him. The new plan was to start “sprinting” him again in a day or so.

I, of course, was not holding my breath this time. I knew that if he could breath on his own, he could go home soon. At that point I was almost afraid to hope, yet couldn’t help it. I wanted so badly to take him home and be a family again. The stress of the situation could have easily torn my marriage apart, but it did just the opposite. Jim and I had never been closer and the connection we had through everything was very strong.

Just before Ryan's three week birthday I hit the "don't pity me - just leave me the hell alone" stage! The emotions I went through ranged from highs to lows every day and it was inevitable. One day I felt sad and very quiet. Then I got sadder for a week or so. Then I got to the point that I was tired, angry and frustrated with the whole daily routine. I feel guilty 24 hours a day because I couldn’t be with BOTH my kids at once and I was MAD that things were so tough. I just broke down and cried and cried. I felt like a basket case.

September 13th
I spoke with Dr. Gates and Dr. Rebolledo regarding Ryan’s cardiac cath he had done. The told me Ryan’s chest x-rays of the coiled arterial vessels looked very good after Ryan's procedure to coil them last. We found out one of the vessels was not actually coiled, but started to bleed and clotted itself with blood during the procedure. (Since it had already been 2 hours into the procedure and taking longer could have been dangerous for Ryan, they left that arterial collateral clotted with the blood and hoped for the best.) Dr. Gates told me that Ryan should "breeze right off the ventilator" the following day since everything about his health looked so promising. Although I wanted to believe it, I just couldn’t be excited, not at that point. I prayed constantly.

September 14th
My gut told me NOT to be excited, NOT to anticipate Ryan’s vent coming out, NOT to hope… yet I let myself hope. Well I had a very horrible day on September 14th, a day I will not forget for the rest of my life. When I got to the hospital in anticipation of Ryan’s being vent free, I found out it was NOT even going to be attempted… MAYBE the following day, just maybe. He had a chest x-ray in the morning and it showed fluid in his lungs so they wanted to wait for the fluid to clear. The devastation I felt was a buildup of many let downs over the last few weeks. I knew in my heart that I could not handle the situation for one second longer – I wanted to die. The disappointment was so strong it put me in tears for most of the day.

At 10:00 am the doctors were doing rounds. By this point, I knew the doctors, I knew the interns, I knew the nurses and I knew the routines…when I heard Dr. Lubinski discussing Ryan. I ended up getting into a confrontation with him. He spoke very rudely to me in front of the interns he was rounding with, Ryan's nurse, the social worker and Dr. Gates, Ryan's surgeon. I felt like I was being attacked because I was getting upset about Ryan's vent being left in. He told me, "I don't know why they told you we were taking him off the vent today - I didn't tell you that did I! Who told you for sure we were doing it? It was never for sure! IF you want me to push it, we'll take him off it tonight, but I wouldn't recommend it for HIS sake!!!" He was very rude and I did not like being talked to that way. I was having a horrible day, possibly the worst since Ryan had been in the PICU. I did NOT want them to push taking the vent out. Of course I wanted what was best for Ryan, BUT I had a right to feel sad that we are waiting yet another day. This waiting was taking it's toll. I told him and the rest of the people standing there listening that I had a right to my feelings and I had a right to know WHY they had changed their minds without being chastised for asking. Then I left Ryan's bedside in tears and went to the bathroom to cry for 10 minutes.

I Knew I had a lot of emotions I had held in coming out, but I was so sick of trying to NOT get upset in front of people. In my opinion, I had been a saint to those doctors and nurses. I always listen to what they said, never complained, stayed positive in front of them, and just patiently waited for Ryan to get better. Who the hell was this man to make me feel bad for having my first bad day at the hospital since Ryan had been there. I cannot even express how upset I was.

Jim came to find me as I was walking out of the bathroom into the waiting room and told me once again "You should be happy Ryan is getting better. We are lucky to still have him alive" for the hundredth time I let HIM have it. I told him I had a right to cry, to be angry, to feel cheated and to voice my feelings if I wanted to. I told him to stop throwing in my face how happy I SHOULD be that Ryan is alive and let me have whatever feelings I was having for a change. Then, Dr. Gates came in and tried to see if I was ok. I started crying even harder and told him I was having a bad day. Much to my surprise, he hugged me and told me "it was about time and it was OK to start showing my feelings." That made me ball even harder BUT it also made Jim stop and realize that what I was feeling was ok. We were ok after that.

What I learned through that experience that day is feelings are there regardless if we WANT them or not. We are allowed to feel what we feel and deal with things the best way we can. Knowing that I was ALLOWED to feel angry and sad at the same time as grateful that Ryan was alive was perfectly normal… my reaction was perfectly normal.

What a day. I held Ryan and he slept like an angel in my arms all morning. My mom and dad came in to see him too which was really nice. Off and on every time someone would try to comfort me today I would start balling. I couldn't control it and I hated being that way.

September 15th
The previous night Ryan had spiked a very high fever. They had to take out his main line because it was causing an infection (IV in his femal artery). They started a new IV in his hand. The infection ended up being a staph infection in his trachea. (Caused by having the vent down his throat so long.) Ryan’s white blood count went from 2.9 to 30 in a matter of matter of hours. That was bad news. They thought maybe it was a clerical error and tested a second time with the same results. He was put on antibiotics and hoped his fever would come down. Of course, this meant they wouldn’t attempt to take his vent out again either. The waiting was awful.

There was a lighter side to the day, however, the whole PICU staff was walking on egg shells around me after telling me Ryan’s vent wouldn’t be taken out that day either. I actually found that so humorous…. I was having a NORMAL day, no tears, no outbursts, no yelling... In the three weeks Ryan was in the PICU – only one time did I lose it. Isn’t it funny how people remember that one bad day as opposed to all of the good days.

First, Dr. Rebolledo came over and tried - ever so gently - to tell me how sorry he was that they were not extubating Ryan that day. (I had already expected it with his fever the previous night so I was not disappointed or upset this time). Then, when Jim and I told him we were FINE with that, he told us how he had heard I was a "little" disappointed at that news the previous day and he was afraid to tell me again that the vent had to stay in. It got even better, Ryan’s nurse said the same thing to me. THEN, the social worker came to check on me and ten minutes later Dr. Gates called Ryan's bedside and asked me if I was ok. What started out as a normal day was quickly becoming overwhelmingly embarrassing. Dr. Lubinski made a visit to the PICU to tell me, "we all have bad days here, it's expected. We don't hold any hard feelings for any of the parents that get angry at us." THAT made me laugh, of course HE didn't apologize for himself, just for my behavior. Every doctor or nurse I saw asked how I was and said they had heard I had a bad day the previous day. It was unbelievable. I was at that hospital 12 hours a day every day and everyone remembers my ONE BAD DAY. So much for the strength I showed in the first few weeks.

September 17th
At 10:00 am on September 17th Ryan's vent came out on its own. He had been trying to pull it out for days and the tape was loose around his mouth. Sharon, his nurse was suctioning the excess fluid from his lungs through the vent tube, down his throat. When she pulled the suction tube out, the vent started to come with it. Ryan started gagging and out the vent came. From the infection in that area, it had gotten very slimy and came out easily. Ryan was thrilled of course. The staff got ready to intubate him again if he didn't breath well. Much to everyone’s surprise he was completely fine! I was so happy. He looked so adorable without a tube down his throat. :-) I had not seen that sweet little face in it’s entirety since he was born.

Sharon let me offer him a little glucose water from a bottle that night. He didn't like it much, but took a few little drops from his lips. He has been sucking on a pacifier non stop all day... when the tube was in he sucked on the tube a lot too. The day was so positive. I finally began to hope that soon he would be able to go home!

September 18th
We started the next step in Ryan’s recovery on September 18th, which was getting him to eat from a bottle or from the breast. The lactation consultants tried the bottle first and Ryan did all right, taking into consideration that he has never had to suck or swallow to eat before. Since he has been sucking on our fingers and a pacifier for some time now, he did very well with the sucking part of taking the bottle. His problem was with swallowing. He was having trouble coordinating sucking with swallowing and we knew it might take some time for him to figure that out. I tried to breastfeed him for his second feeding and he did all right with that, but not great. Of course, he was still being fed breast milk through his NG (nose) tube to make sure he was getting enough nutrition. Once he was able to conquer this new hurtle, he would be on the home stretch in his recovery.

September 19th
I tried feeding Ryan the bottle again without much luck. He actually drank from it - or so we thought. Then proceeded to throw up everything he drank. So, we ended up feeding him via the tube since he was so tired from trying to suck/swallow. We stopped trying the breasfeeding at that point. We had to teach him to coordinate sucking and swallowing with the bottle of breast milk. We thought maybe Ryan's throat was just too sore to swallow without pain.

He was taken off all of his IV medications accept the antibiotics for the staff infection in his trachea. The nurses were trying to give him a new IV and I finally heard his little cry. He didn’t make any noises when the vent was in, so hearing his little hoarse cry finally was music to my ears.

September 22nd
On September 22nd Ryan was moved from the PICU back to the NICU (where he was just after birth) It wasn’t much different there, just a little more strict on the visitation rules. I missed Ryan's regular PICU nurses though, but he had good ones back in the NICU too.

September 23rd
We had been TRYING to bottle feed Ryan every 3 hours. Ryan and I had been working with a Therapist daily and he was coming along pretty well. He was given 46 cc's of breast milk mixed with a little formula for extra calories and a teaspoon of rice cereal to help hold the milk down. He was still having trouble swallowing the whole bottle because he got very tired and fell asleep just from sucking and swallowing for a few minutes. He also had a problem spitting the whole feeding back up if he drank too quickly. The first few days of this he only drank about 10 cc's from the bottle and we had to tube feed him the rest. On the 22nd I actually got him to take 25 cc's at a couple feedings and then a whopping 33 cc's his last feeding before I went home. I was so excited. Then, on the 23rd I could only get him to take 14 cc's. I knew he would have some bad feeding still and tried not to be discouraged. Our goal was for Ryan to drink the whole bottle because that would mean he could go home.

Ryan started using his baby swing and his bouncy chair. He was so alert all the time and would not just lie there and be still anymore. He loved the bouncy seat but looked so tiny in it. His weight had dipped down to 6 lbs 9 ounces.

Jake saw Ryan again on the 23rd. It was great. He kissed him and held his hand. Ryan slept through the whole thing, but we videotaped it anyhow. Jake was so cute with him. He acted out quite a bit for a couple of days after that, so I think that maybe the visit affected him more than we first thought.

September 26-28th
Ryan was not doing better with his eating and it was so frustrating... I had my own little pity party. I sat in front of the tv not really watching it for hours, not moving, just feeling depressed about my situation that seemed to be moving sooo slowly. It didn’t seem as though Ryan would get to come home soon. His feeding wasn't going very well and he kept throwing up and losing weight, which he couldn’t afford to lose. Ryan was learning how to suck and swallow, but not as quickly as I hoped. He was fed this every 3 hours BUT we had to change it to only bottle feeding every 6 hours. The other feeding was through the tube so he wasn’t so tired out and could feed better at the bottle feedings. He would get tired and crabby because it was hard work for him but he had to build up his strength and tolerance for the fluid in his throat.

Another issue we were dealing with was his acid reflux. He was throwing up a lot of what he was taking in. He finally was put on medication for that and the throwing up stopped at that point. Because of the vomiting, he lost more weight and was down to6 lbs 9 oz, which was another issue. Our NEW goals for going home were; he had to show that he was gaining weight before he could go home AND he had to take 60 cc's from a bottle every 3 hours. TWO major goals that seemed very far away. He was improving with his eating a lot and wasn’t as stressed out when he ate anymore. He finally started sucking peacefully instead of fighting every step of the way through a feeding.

On the 27th they were going to do a spinal tap (sticking a needle into his spine to draw out fluid for testing) to check his spinal fluid for meningitis. The staph infection in his trachea causing the meningitis was a concern. However, since Ryan showed NO clinical signs of having meningitis, they decided against it. Thank God. They were watching him for a spiked fever or signs of fussiness and loss of alertness which were the signs of meningitis. It was so scary. Meningitis on top of everything else would have pushed me over the edge.

I was a complete mess at this point. I didn’t know how much longer I could do this. Jim and I were suddenly fighting a lot, Jake wasn’t sleeping and I was exhausted. I began falling into a depression that I couldn’t seem to control. I thought I was doing so well and then all of a sudden I felt out of control.

September 30th
Jake - I was LOST as to what to do about his behavior. He has always been very smart, very aggressive but very sweet at the same time. He was having a problem at daycare with biting the daycare kids, hitting and pinching everyone. We had tried everything to get him to be less aggressive, nothing worked. Since Ryan was born, Jake’s aggressiveness had slowly turned into a frightening thing. Terry (Jake’s daycare provider and long time family friend) called me at the hospital and told me that we had a serious problem with Jake. She told me how aggressive he had been (10 times worse than before Ryan was born and not always provoked by kids stealing toys). She was afraid for the other kids, and said they were becoming scared of him. Terry also told me that Jake had been zapping all of her energy and it was too hard to take care of a child acting the way he was acting as well as taking care of her other kids. If he wasn't our son and a family friend that she loved so much, she would have had to kick him out of her daycare for this behavior long ago. I knew she felt horrible for having to bring this to my attention because she loves Jake and knew we were going through a lot. She didn’t know what do anymore, and neither did I.

I talked to the social worker at the hospital about my depression AND mostly about Jake. She assured me that what he was going through was VERY normal regardless of how aggressive he got. He wanted his life back and didn’t understand although he pretended everything was fine. He was hurting inside a lot and though he verbally could NOT express some things, he didn’t totally understand what he was feeling to verbalize it either. It made sense to me. We were told that it would help to bring Jake with both of us to see Ryan and then the 3 of us leave together. Jake knew that one of us was always with him and one with Ryan and it bothered him that we are cut in half - like a divorced family.

We did try going to the hospital together and then we all left for a trip to Disneyland. Although it was very tough leaving Ryan for the whole day and night, it felt so good to be out in the warm sun, spending time as a family enjoying ourselves. I think it was a therapeutic for all three of us.

October 3rd
I had no idea WHEN Ryan would be coming home, and that question that I had no answer for being asked constantly was frustrating to me as well as to those asking it. I couldn’t even express the frustration I felt with every little backslide. On October 3rd the doctor ordered an MRI just to RULE OUT the possibility of a neurological problem. They didn’t find any problems, but they wanted to be able to rule it out so we could look at the next step. We were happy the results were negative, but we still had no clue why Ryan was having his feeding issues.

Ryan began to be very irritable in the middle of the night, another concern. He had been on the drug Methadone which helped with the drug withdrawal he was feeling after being weaned from the heavier drugs. He was now also being weaned off of the Methadone and the concern was that the irritability was a sign that he was being weaned too quickly. My poor son was not even 2 months old and he was going through withdrawals… horrifying!

October 5th
I was asked to spend the night with Ryan and give him every feeding (every 3 hours) for 24 hours. He had been taking his feedings from me very well during the day but his 12am, 3am and 6am feeding were poor when the nurses fed him. They wanted to see if he would eat well for me and if so, it was a possibility he could go home if I could handle it. The feedings were always a lot of work for both of us. There was also a possibility of him coming home with a small feeding tube in his stomach so we could be sure he got enough nutrition. His weight was down again. He was continuing to lose weight because he used up too many calories trying so hard to eat.

Ryan had been very fussy lately, even for me, which was rare. He had been crying for an hour at a time inconsolably. He got an EKG to make sure that he wasn't having any problems stemming from the surgery and the transposition of his arteries. Just precautionary, trying to find a medical cause for the extreme agitation he was feeling sometimes. The EKG came back normal.

Ryan continued to be extremely fussy. I couldn’t understand it. At least I knew he was NOT fussy with me. He did eat better for me than the night nurse, but not good enough to go home yet. First it was getting him off the vent, then feeding him, what was next? It was so frustrating.

Ryan was taken to the lab for an Upper GI test. The test later came back stating that Ryan did NOT have reflux like we thought he had.

October 8th
For two days Ryan had not had good feedings at all. He hadn't taken much from the bottle and a lot of his feedings had been mostly through the tube. He seemed to do better when I feed him though. Jim and I spent most of the day outside of the hospital with Jake. It was hard enough to leave him at all, but when I came back for the 6pm feeding and found out his nurse had not put the rice cereal in his bottle all day I was furious! What a setback. The rice cereal made the milk heavier, so Ryan could control the flow down his throat. He had only taken 10 cc's all day (out of 50 cc's) from his day nurse. That night at the 9pm feeding I stayed to be sure the bottles were prepared correctly. For the first time, Ryan drank the entire bottle! That was HUGE!!! I had never in my life been so elated as I was to see him down that bottle. I could finally see the light at the end of the tunnel. It truly was scary how the smallest of things could elate me or make me miserable.

October 9th
October 9th the PEG tube was inserted into Ryan’s stomach. (A peg is a feeding tube in his stomach that has to be surgically inserted). He had been fed through a tube in his nose for up until the point of getting the PEG tube inserted. The reason for the PEG tube was that at home what he refused to eat he could be fed through the PEG and if he is too tired to suck, we could tube feed him at night. Since the constant pushing him to suck and swallow was not good and could cause him to just refuse to re-learn the swallowing reflex if pushed too long, we could concentrate on easy feedings at home. If he was allowed to swallow what he wanted without being pushed, he was more likely in time to accept swallowing rather than rejecting it. We knew that the ability to swallow as a reflex and not a learned behavior disappears at 3 months, so we were working against time to get him to swallow without him having to think about it. The plan was after he was released I would take him back into CHOC two days a week for feeding therapy again with Karin. He did very well with Karin and I really liked her too.

The PEG tube was a little bigger and bulkier than I expected, but I didn’t really care. As long as he could go home with it.

October 11th
Ryan was circumcised. Poor guy, he'd been through so much already, but we wanted it done before he was discharged. Jim went to see what our total bill JUST for the hospital stay was so far and we were shocked… the bill for CHOC as of October 5th was $399,671.18!!! We only had to pay $100 co-pay. Keep in mind, this bill did NOT cover the lab bills, surgeons, cardiologist, resident doctors, nurses or any other medical personnel we were scared to death that Ryan might actually use up his lifetime coverage of 100,000 if he wasn’t released soon.

Ryan was home for the first time on October 11th at 7pm. We were so excited!!! Being released on so many medications was very intimidating for me though. He was on 8 of them included Methadone (to be slowly weaned off of), Reglan, Zantac, Iron, Lasix, Aldactone, Antibiotics and Tylenol several times a day. We were faced with new challenges, taking care of a heart baby as well as learning to give medications through a PEG tube. We had to learn to coordinate his medication with the 8 feedings a day (every 3 hours) because some of the meds had to be given 10 minutes BEFORE the feedings. Each med had to be given several times a day as well. It was a struggle to do this on top of pumping my breast milk, cleaning his PEG area as well as the circumcision... cleaning the PEG tube was one of the hardest things I have ever had to do. The PEG got a little infected and had to be cleaned hourly. I really thought I would vomit, but after the first few times, I only got light headed and a little clammy. Basically, it was lots more work than we realized. Of course I was NOT complaining, we were just exhausted.

Once Ryan got home, he refused to eat or be fed through the Peg-tube for the first week. When we fed him through the PEG it took both Jim and I to do it together. One had to hold Ryan still, while the other had to hold the tube up higher than Ryan’s stomach or the tube would back up. We had to be sure to pour the breastmilk in very slowly (no faster than he could normally drink it or his body would push it right back out the tube and it would squirt out like a hose.) It was impossible to do a feeding alone unless it was the midnight, 3am or 6am one if he was sound asleep. It was a scary time, watching his months of progress regress... we talked to several doctors and, of course, Karin Mitchell regarding his feeding issues. Not only was he not eating, but he was crying constantly. We were told he had colic on top of everything else... but we couldn't help but think, "at least it's a NORMAL baby problem for a change!"

On October 17th, against the advise of Ryan’s GI doctor, our cardiologist and Karin (Speech Language Pathologist helping us with his feeding) Jim and I decided to switch from breast milk to Similac formula to see if it made a difference in Ryan’s feedings and colic. In a matter of hours Ryan’s crying stopped and with the formula switch. OVERNIGHT he started feeding again, but this time better than ever. A week later he was taking almost every feed from the bottle and not just the 55 required. It was the miracle we had been looking for. Ryan had been allergic to my breastmilk!!! I had been so stressed out while he was in the hospital, that my milk was filled with stress hormones. My milk stressed Ryan out more. For months he had been force fed something that made him physically sick and we didn’t know it. It took me about a day to defrost and pour out all of the bottles of breast milk I had stored in the deep freeze. It was a huge relief to stop pumping my milk and to see so many positive changes in Ryan...

That October day, for me, marked the beginning of Ryan's "real life"... now he is a happy, carefree child with everything to live for. His courage and strength should be a lesson to us all. It's only because of his smile, hugs and kisses that I am able to look past his future of uncertainness and look forward to each day we can spend together as a family.

Looking back on a horrible time...
My mom was very sick, my own life was completely turned upside down and I didn't know if I would ever feel at peace again. Termoil with some of my extended family ended up in an email war. I honestly didn't know I was so angry inside until I started typing! I just couldn't fathom someone else thinking their life was worse than mine at that particular moment... and I made sure they knew how I felt. Attached to my email was a photo of Ryan just moments out of surgery, frail, and looking as close to death as he would ever be.

...in my email I stated in part, "Since August 23rd at exactly 4pm my life has been a nightmare I wouldn't wish on anyone. See, I know the exact TIME my life turned upside down because I am living it. I don't expect anyone else to remember that, or to live it for me or with me, just to understand that I am going through my own hell and may be a little less attentive to relationships around me for a while. My life for the last 2 months had been driving to the hospital daily, staying there for 8-10 hours a day, crying, not eating, not sleeping and then coming home at night and trying to act normal for my 2 year old son. (Who started having behavior problems because of his world being turned upside down.) My worries went from "JUST paying the bills" one day to all of a sudden "no money at all coming in because we can't work with our son in the hospital with a 50% chance of living." Money, to put it mildly, was the least of my worries. We spent our entire savings while Ryan was in the hospital. I had to deal with my newborn son dying and ask myself where would we get money for a funeral? Where would we bury him? How would we explain it to Jake? Most importantly, how would we live without him?, etc. Ryan is home now, which I thought would ease my worries. Then, all I had to worry about was how will Ryan learn to eat? Will his feeding tube ever come out? Will my son have permanent mental and physical problems? How do you deal with a colicky baby on no sleep and major stress? How will we pay the bills when we can't work and no money is coming in for months now? How will I EVER go back to work when I can't send my son - feeding tube and eating problems on 8 medications a day - to daycare. All the while in the back of my mind are the haunting questions I cannot even bring myself to think about yet... How long will Ryan's surgery repair last? Will he die at 18 years old since that is the OLDEST child alive with this heart defect repair? What are my medical bills going to be like in the future? Will Ryan need more heart surgeries over the years... when he is old enough to understand and be scared?... I could go on and on about how I feel, but I don't feel it is my right to drag the rest of you down with me. I am scared and I am going to be scared for the rest of my life worrying about losing my son. We are all scared of what life throws at us. All I can do is deal with it and know that it is all for a reason and only God knows what that reason is. I have attached a photo of Ryan, just 1/2 hour out of surgery. THAT is the reality I live in right now. Just in case you wanted to know."

Wow, I had spent so many days pretending to be ok and not letting myself cry, because I knew if the tears started, they wouldn't stop. With this email, I released so much pain and anger that I finally found the peace I had been praying for. Thank you for taking the time to read my story. I hope it changed you in some way, the same way Ryan's miracle has changed my life. :) ~Cathy