Jacob (A Story of Miracles)

A year ago today we brought Jacob home from the hospital. Though his surgery took place on March 27, it was Easter and with Easter right around the corner I wanted to remember and share the miracles surrounding Jacob. While I have posted his story previously, it is a short version of sorts. I thought to commerate today and Easter in two days by posting his full story. It will be long, but I hope you find it worth it. (written in June 2005)

My due dates are elusive and our babies lie in wait until the best possible moment to spring into our family. We had an ultrasound at 4 weeks in hopes of pinning down an official date as if somehow we would unearth the magic number. Regrettably it was another week past my original due date. I felt like I had caught the undersized fish of due dates, “can we toss it back and try for another?” We have three energetic girls who wanted nothing more than a baby brother. At times when Paul and I felt we might have a boy we were reluctant to say anything. Elizabeth was especially stubborn telling us repeatedly, “We are going to have a boy. I know it, I know it!” I found myself frequently reminding her only Heavenly Father knew if we would have a boy or girl. He would send the perfect spirit for our family.

We felt confident throughout the nine months the baby would be healthy and were assured through priesthood blessings the pregnancy and birth would be without complication. After Jacob was born several people expressed feelings of anxiety during my last trimester. My mother and father were serving in the Manila Philippines Mission. One day when Mother was feeling particularly anxious she felt overwhelming peace and calm that I would be fine and the baby would be a boy. Paul’s father was filled with a sense of serenity and assurance when he felt there might be something dreadfully wrong with the pregnancy and birth. Tara, Roger, and Shahana (close friends) all expressed similar experiences and in each case as they prayed were comforted and felt no more apprehension.

Jacob had us playing the Russian roulette of due dates. The original due date was February 20th and the ultrasound had said February 28th. Waiting was arduous and I was so sick of people asking me, “Have you had that baby yet?” When the first week after my ultrasound due date diminished into a dark void we changed our message machine out of sheer desperation, to say, “You have reached the Wagners. No we have not had the baby yet, and we will let you know when we do!” Friday, March 11th, when Junior’s birth persisted to elude us, I requested a priesthood blessing. I was advised the time was nigh and the baby was prepared and willing to come. We were also informed we were prepared and had made the correct decision to have a homebirth.

Early Sunday, March 13th, I woke up to my contractions acquiring potency and not fading into nothingness. At 5:00 a.m. I decided it was genuine and called our midwife, Jennifer. She chuckled, saying, “We should have known!” It was ward conference Sunday and the choir was singing. She is the choir director and I am the pianist. The previous week Bishop Meyers inquired of her, “Now you will be here next week, right?”
“Oh yes, Julia will have had her baby long before then.” Jennifer replied. It created quite a comic surprise for the ward and all were eager for news of the birth.

Jennifer arrived with her two assistants, Whitney and Joy, at 5:30 a.m. and Paul began to fill the birth tub. Tara came to help around 7:30 and her husband, Trevor, took our three girls to church along with a cell phone to receive the good news.

At long last, three weeks from my due date and two weeks from the ultrasound due date, Jacob entered the world at 10:37 a.m. March 13, 2005. Paul caught the newborn and lifted him into my arms. We were delighted to see we had a boy. We knew instantaneously he was Jacob Paul. He was exquisite, lovable, and healthy in appearance. His pulse, breathing, respirations, and vitals were normal. It is natural for infants to be slightly purplish at birth and his coloring was comparable to my other babies. He weighed 9 lbs. 14 oz. and was 21 ½ inches long! He had a head of dark brown hair, complete with sideburns.

A short time after Jacob’s birth Tara called and told Trevor the fantastic news. Smack dab in the middle of the priesthood lesson Trevor stood up, “Paul& Julia had a boy! Mother and child are doing well.” He also went into Relief Society to broadcast the birth. We were later congratulated by the Bishop for being the fastest parents to ever announce the advent of their new baby. Upon their arrival my daughters bounded into the bedroom keen to see the recent addition. Elizabeth hopped up and down crying, “See? I told you Heavenly Father knew we needed a boy in our family! I guessed it, I guessed it!” A jig of joy followed her boisterous remark. Dorothy and Emily were equally animated over seeing Jacob.

Jacob was a big eater from the start. Jennifer came for the six day follow up on Saturday morning. He was gaining weight and his vitals were normal but she was troubled that he was still somewhat purplish in color. We resolved to call Brother Jeff Johnson and solicited him to assist Paul in giving Jacob a blessing. Jacob was blessed that he would grow, be healthy, and live a long life. After discussing Jacob’s condition with Jennifer we decided if his color wasn’t better on Monday we would take him to see our Pediatrician, Dr. Whittaker. We felt peace and tranquility about our resolution.

While I was sleeping I had a terrifying dream that Jacob was having difficulty breathing and started turning blue. In my dream I called Jennifer and our pediatrician, Dr. Whittaker, and we rushed him to the hospital. I was exceedingly grateful when his crying woke me. I passed the dream off as a horrific nightmare.

Monday came and his color was greatly improved so we elected not to go visit the doctor. I called and scheduled his two week check up for the following Monday.

Jacob’s crying woke me early Wednesday morning and I endeavored to pacify him by feeding him. We observed he appeared to be gasping for air. We could not determine if he was struggling to breathe or if he was crying too hard and was attempting to catch his breath. Paul felt impressed to give him a blessing. Jacob was blessed his breathing would return to normal; he would eat, and get all the rest he needed. He subsided shortly after and fell to sleep while nursing; sleeping for the rest of the night.

Wednesday morning I watched him critically. Finding his breathing satisfactory, I relaxed and planned for my mother daughter date with Dorothy. Before I left I received a phone call from Kay in our ward inquiring about the details of Jacob’s birth. “I would like to bring you dinner tonight,” she told me. My first thought was “We don’t need dinner, Paul’s mom and I can manage” but for some reason I listened to myself accepting her offer. “That would be wonderful, thank you very much!” I felt the words spilling out of my unwilling lips.

At 11:30 I fed him once more before Dorothy and I went on our date. Elizabeth visited her friend Hannah while my mother-in-law stayed with Emily and Jacob. Paul’s mom had arrived on the previous Saturday after we convinced her we felt her presence was essential. I had been feeling guilty because I was capable of doing things on my own, and had not required a lot of help. I was worried she might be feeling like she was not needed.

It was 2:00 in the afternoon when I got home and found Mom nervous because Jacob did not seem to be breathing right. Maggie, Hannah’s mom, had brought Elizabeth home and stayed to wait for me; concerned about Jacob. I dashed into his room and snatched him into my arms. He looked purplish again and pasty. His hands were purple, limp, and cold. He was gasping, moaning, and unresponsive. I was terrified and froze for a minute, not able to think. Thoughts buzzed through my head like a swarm of angry bees, persistent and determined. My dream came rushing back to me as a great deluge and I went on automatic pilot. I called Jennifer first to tell her what was happening and then I called the doctor’s office. Nurse Deb answered the call. “This is Julia and my baby is having trouble breathing.” I sounded so mechanical as I spoke into the phone.
“Is he blue?” Deb asked.
“No, he has a purple hue and his hands and feet are purple.”
“Check around his mouth and inside around his gums,” she ordered.
I checked and reported they were not blue.
“Let me listen to him breathe,” Deb requested and without responding I held the phone up to his mouth. She said since he was not blue she would consult with Dr. Whittaker and call right back.

I got off the phone and called Paul to relate the recent events. I had managed to hold things together but the instant I heard his voice the dam broke and I was flooded with tears. I alerted him that Jacob wasn’t breathing right and we were taking him to the Doctor’s office. “I’m there,” he said and hung up. All he said at work was “I am needed at home,” and they said “Go”.

A split second after I hung up the phone, Deb called back, “Is he blue?”
“No,” I replied.
“Doctor Whittaker wants to see Jacob. Bring him in right away, but if he turns blue go straight to the hospital.”

I hurriedly put Jacob in his car seat. I made a mad dash to the door and as I flung the door open I felt a prompting to call Shahana. I raced to the phone and punched the numbers as quickly as I could.

“Jacob is not breathing right and I am taking him to see the doctor, possibly to the hospital. Could you please call someone who might be home to assist Paul in giving a Jacob a priesthood blessing?” I pleaded. She affirmed she would. Leaving Maggie with the children, Mom and I bolted to the doctor’s office, a 3 minutes drive at most when not speeding.

Concerned about getting Jacob into the office as soon as possible I vaulted out of the car. I didn’t look at him, I grabbed him out of the seat and tossed the blanket on his head to keep the wind off and sprinted inside. Deb met me almost instantly. She took one look at him and asked, “When did he turn blue?” I looked at him and realizing he must have turned blue in the short time it took to get there. Deb grabbed Jacob out of my arms and we darted across the street to the emergency room. She performed mouth-to-mouth respiration on the way, striving to maintain his breathing. I was too timorous for rational thought.

We got to the hospital and hammered on the ER door. Kathy, the emergency room clinical coordinator, came charging over to let us in. She immediately seized Jacob and raced him into a room, while shouting for a Code Blue. I have never seen so many people swarm so fast. It was like someone had shouted “Free food!” to a group of ravenous Boy Scouts. Doctors and nurses pounced on him doing all they could to keep him alive. I was in shock thinking to myself, “Wow, this is really bad.” Somehow I refused to comprehend how grave the situation was. I was sobbing, and bewildered, not understanding and overwhelmed. They took me out of the ER room but I could still see inside. I began to pray; it was all I could do. I know Paul’s mom was praying right along with me as well as Deb, and every other nurse and doctor.

The hospital Chaplain came to me and said they always call for the chaplain in moments like this. I thought to myself, “This is really, really bad.” I could not believe it could possibly be serious enough to require the hospital chaplain to stand in Jacob’s room and pray for him. My mind could not gain a grasp on the situation; all I could do was hope for and believe in the best.

Not too long after we arrived Bishop Meyers showed up. Shahana later told us she was in the process of calling someone and halfway through dialing the phone number she could no longer dial. She was prompted to call the bishop, “But the bishop isn’t home during the day,” she thought to herself. The prompting came again and she heeded the feeling, calling the bishop and finding him home. He arrived before Paul and observed what was happening.

By now it seemed I had recited the story of what occurred a million times. Yes he was, eating, breathing, and his respirations were normal. He was a little purple, but no more than my other children at birth and he had improved. The nurses and doctors were doing all they could to stabilize Jacob and keep him alive. They started talking about transfer to the ICU at Emmanuel, and I think my dull mind started to grasp how severe Jacob’s dilemma was. To think that it was serious enough for him to be in ICU at one of the best hospitals in Portland was terrifying, yet I felt comfort as I was reassured that he would be in the best possible hands.

As Paul drove in from Portland he saw our car at the doctor’s office and felt sure Jacob was fine. He walked in and told them he was there for Jacob and Julia. When they told him we had rushed across the street to the ER his heart plummeted to his shoes. Paul rushed over and was filled in on what was transpiring. I could tell he was endeavoring to be brave for my sake.

They put in a breathing tube and took x-rays. When the breathing tube did not help Jacob improve the doctors knew they had a cardiac baby. Dr. Whittaker, who had come in on his day off, asked if we had a history of transposition or any other congenital heart defects, to which we answered no. The Bishop mentioned he knew all about transposition and said his daughter Erin, my piano student who is 16, had transposition of the great arteries. She had heart surgery at 2 days old. Shortly after, we overheard the doctors talking about transferring him to Emmanuel without delay to do something called a balloon atrial septostamy. The bishop immediately recognized what they were talking about from his experience with Erin and explained it to us. As he listened to them talk he said, “I’m not a doctor but it sounds an awful lot like what happened to Erin when she was a baby”.

I was aching to call my sister Heidi. I needed the prayers and support of my family. I was too emotionally distressed to form a coherent prayer other than a repetitive plea. I called Heidi and asked her to notify the family but not to say anything by email because I didn’t want to worry mom and dad until I had all the details to give them. Once I talked to Heidi I felt an immense relief and sense of support simply knowing my brothers and sisters would be praying for Jacob.

The ER finally had him stable enough and ready for transport around 5:30p.m. Initially ground transportation was called in, but it was rush hour and they were apprehensive Jacob might not get to Emmanuel fast enough. They decided to life flight him because he was only at forty percent oxygen. Before he was life flighted we were able hold his limp hand, and be with him for a few minutes. Paul and the Bishop gave him a blessing in which they told him he would respond to the Doctor’s treatments and grow to live a long life. Paul and I wept as we watched the helicopter fly in that would take Jacob to the hospital.

Before we departed for Emmanuel we stopped by the house. We explained to the children that Jacob was really sick and mommy and daddy were going to the hospital. We grabbed a few things and hastened on our way. We were particularly grateful for Sister Goodsell’s dinner and that Maggie had been there to watch the children for us while we were in the ER.

When we got to Emmanuel Children’s Hospital we found out Jacob was in the Pediatric ICU. We headed up there as swiftly as we could, but the elevators were hesitant to race us towards bad news and were going their own sluggish pace. Upon arrival at the doors to the ICU we saw a huge stop sign posted. It said there was an emergency surgery in progress and no one was to enter. We knew it was Jacob. Full of exhaustion and fear we called on the little phone outside the ICU and told them we were Jacob’s parents. They were expecting us and told us someone would come out as soon as possible to explain his situation. So we waited.

Pretty soon Mary, the cardiac nurse specialist, came out and elaborated on his condition. Imagine our amazement when she explained to us Jacob had a heart defect called Transposition of the Great Arteries (TGA); exactly what Erin had as a baby. It was an immense solace to know she had been through the same thing and was perfectly healthy. The nurse explained the procedure they were currently doing, the balloon atrial septostamy.

In TGA the aorta and pulmonary arteries in the heart are switched. When the oxygenized blood from the lungs goes to the heart, it gets pumped back to the lungs instead of being pumped to the body. The deoxygenized blood is circulated through the body, so he can not receive oxygen and begins to die. In the womb blood circulates through a ductus, the patent ductus arteriosis or PDA. It allows blood to mix and oxygenize bypassing the lungs which do not begin to work until after birth. Usually the ductus closes up within one to two days of being born. In Jacob’s case it did not close until he was 10 days old. He was able to survive because the PDA was still open and his blood was mixing and oxygenizing. When it closed he immediately went into respitory distress as he ran out of oxygen.

The procedure they were doing when we arrived was to re-open a hole in the wall between the two chambers of the heart so blood could begin to mix again. They insert a catheter into his leg vein, threading it through to his heart. They then inflate a tiny balloon and pull on the catheter to rip the hole between the two chambers. This would stabilize him and his body could receive oxygen. They were also giving him a medication in hopes it would help the PDA reopen, but the chances of success were slim.

After we spoke with the nurse it was back to waiting. While we were sitting in the hall Tara and Trevor showed up, it was a reprieve to see them and feel their succor. Not too long after they arrived Allan (from our church) came. Tara and Trevor had brought us some dinner, and when Allan discovered we didn’t have anything with us, such as toothbrushes, deodorant, and contact solution, he went to the store and bought everything we would need. It was an incalculable blessing. We also received a great deal of support from Jennifer.

After the procedure was finished the doctor came out and expounded on what he had done and how Jacob was doing. Jacob’s cardiologist is Dr. Marc LeGras. He explained to us Jacob was really sick when he came into Emmanuel with oxygen levels at 30%. He also praised the work the doctors and nurses in the Newberg ER had done. They worked fast and rigorously to keep him alive. We were told Jacob was really lucky he had even made it to Emmanuel in time. If there had been one mistake or one thing out of place Jacob would have died. He was critical enough there was not time to set up the cath lab where they typically do the balloon atrial septostamy. They had to do it right there in his room.

Later we got to know the people next door and they were there when Jacob was brought in. The mom described the events, “The transport team rushed in and the nurses ran by each room telling everyone the ICU was going into lock down for an emergency surgery and no one could leave or come in until the surgery was completed. I thought to myself, I sure don’t want to be those parents right now.”

Dr. LeGras stated the procedure had been successful and Jacob was stabilized. We were grateful to Heavenly Father for this small miracle because it had not gone quite as well as Dr. LeGras had hoped and almost could not open the hole.

Once again we waited while they cleaned his room. The prognosis was to keep him stabilized and let his organs recover from the shock they had suffered. The doctor and surgeons had to be sure he was strong enough to make it through surgery. It was 10:00 at night before we got to see him and we were dead on our feet. Even though his color was much improved it was tough to see him with tubes and wires all over his body. He looked too tiny to have so many things hooked up to him. The nurses had made up some beds for us in the parent sleep room. Finally around 11:30 we were too exhausted and drained to stay up any longer and finally crashed to bed.

Thursday morning, March 24th, we came into his room as early as we could. We met our day nurse, Bonnie, who would become one of our favorites. She had put a beautiful colorful blanket around Jacob. It was encouraging to see a little color, comfort and cheer. The blanket was donated and had a card with it. We were amazed when we saw it had been made by sisters from the Four Corners Ward Relief Society in Salem, Oregon. Both of us began to cry as we realized how many miracles, big and little, we had already witnessed. We read him stories and received oceans of beneficial advice from Bonnie about how to deal and remain partially sane.

“Ask a friend to run interference and refer everyone to that person,” was one of her first seeds of wisdom. We changed our answering machine to let people know Shahana was our interference runner and to call her for updates. Bonnie warned us telling the story over and over would wear on us and our family members, especially not knowing what the outcome would be. She also reminded us to be careful of what was said in our children’s presence as they might only hear parts and not understand. They could blow things out of proportion or think we were talking about them and scare them. She recommended against having a lot of visitors because they would tire us out and take us away from our son. Bonnie was wonderful and thoughtful, always explaining what she was doing and answering all of our questions.

We did allow some visitors such as Tara & Trevor and Bishop Meyers, Susan, and Erin. It was nice for them to come, and very interesting for Erin. It was a huge blessing and comfort to have Erin there and to see for ourselves that a positive outcome was possible. We could feel every prayer and guardian angels encircling and sustaining us.

In the afternoon Bonnie gave us a cafeteria card with $70 on it that had been anonymously donated. Not having to worry about how Paul was going to eat was another miracle. I was on the hospital food menu because I was a nursing mom.

Paul’s Dad flew in on Thursday. Because we planned to have Jacob’s baby blessing on Easter Sunday Paul’s Dad already had an airline ticket. After Dad flew in, he, Mom, Uncle Joe and Aunt Sandy all came to visit. After their visit we put the word out that we did not want visitors. We wanted time with Jacob and didn’t want to feel like we had to entertain and socialize. I called my mom and dad in the evening to let them know what was happening. Since I had all the details of what, when and how I felt at peace letting them know about our situation and assured them that Jacob was in very good hands.

Time in the hospital sifts through one’s fingers and begins to loose all sense of shape. Minutes pass into hours, hours into days, and days into weeks. It is like someone is stirring a huge pot of mush as all the events bleed and blend into each other. All concept of time is lost as you stare at the monitor hour after hour willing the numbers to stay where they should. Not being able to embrace Jacob, my heart and arms ached. I yearned to hold him. I craved comforting him and whispering to him that everything would be fine and we loved him. I could still tell him, but I couldn’t rub my cheek on his head and give him kisses. All I could do was hold his little hand or foot and kiss his head occasionally. It was equally hard on Paul. We both went through strong moments and really hard weak moments full of doubt and tears. We would return home for a few hours in the evenings to spend time with the children and all I did was hold and cuddle them. Driving back and forth was sometimes the hardest. I couldn’t bear to leave, but I knew my children needed me, and then I couldn’t get back to the hospital fast enough. Paul’s work was incredibly supportive about giving him time off even though he had started the job two weeks earlier.

On Friday as we walked about the hospital we noticed there were signs posted advertising an Easter dinner for all pediatric ICU patients, parents and staff. On closer examination we noticed the dinner was hosted by volunteers from the Church of Jesus Christ of Latter-day Saints. Once again tears were shed as we realized just how closely involved the church and Heavenly Father were in our time of tribulation.

When we were walking to the cafeteria for lunch I thought I saw someone I recognized. Upon seeing her husband I stopped dead in my tracks. It was Michael and Brigette. I had played in the Hillsboro Symphony Orchestra with them. Brigette had played violin, and Michael played French horn. Michael also played piano very well and we had played duets frequently. I knew Brigette was pregnant and that they had a boy, Ben. However, when we moved to Newberg I lost their information and hadn’t been able to contact them. As we talked to them we found out they were there donating toys to pediatrics because Ben had a congenital heart defect. His first surgery had gone well, but his second surgery was risky and there had been complications. He had passed away about 6 weeks ago. They asked why we were there, and we explained about Jacob. They were concerned and caring. They had nothing but high praise for the cardiologists, cardiac surgeons, and Bonnie. Brigette was very supportive and told me to call anytime o day or night to talk if I needed to. She offered to come Tuesday, the day of the surgery, to sit with me and bring us lunch. It was a great blessing and support to see them. They had seen both sides; they knew how it felt to be successful and how it felt if things didn’t go well. They were an inspiration to us, knowing should the worst happen there would be a way to survive and make it through. They had such strength.

Each day we got progress reports from Dr. Legras, and on Friday I met Dr. Iguidbashian, one of the surgeons. He and Dr. Starr are considered one of the best cardiac surgeon teams in this half of the country. He informed me Jacob was a candidate for the surgery, even if he was older than what they preferred. They were planning to do the surgery on Tuesday to give Jacob some extra time to recover and get stronger. We were also told they did not find any brain damage when they performed the ultrasound of the brain.

Friday evening we went home to make Easter baskets and decorate eggs with the children and Grandma and Grandpa. We made Jacob’s Easter basket out of one of his diapers and put a bunny and duck in it. Every time I walked past his bassinet I looked in out of habit expecting to see him there sleeping serenely. It looked so barren I would tear up and say a little prayer; every time I was reassured that all would be well. When we returned to the hospital we found Bonnie had left cut outs of Jacob’s hand and footprints for us, knowing we wouldn’t have had a chance to do them yet. Her attention to detail warmed our hearts.

Paul and I were able to meet with the surgeon on Saturday and he talked us through the surgery and what we could expect. We left at 11:00 to have Bunny Day with the girls. We did their Easter baskets and had some Easter egg hunts trying our best to be jovial and cheery. I gave Paul a pair of brown and white cow pajama pants that said “Got Milk?” on them to match a pair of black and white ones I gave him in January.

When we returned to the hospital on Saturday afternoon Jacob was doing poorly. His Oxygen levels were not as high as they were required to be, and dropped a number of times into the 50s. Dr. King, one of the other cardiologists, was on call and it was decided that Jacob’s blood was not mixing adequately. They could wait no longer. Jacob was to have surgery on Easter Sunday. I was partially relieved because then he could finally start to make progress. The other half of me was terrified because I had two less days to prepare.

Dad and Paul gave Jacob a blessing. Jacob was told Easter Sunday was the day appointed for his surgery, he would be receptive to the surgery and all the other treatments, he would be healthy, and live a long life. He was told he would be a missionary and had guardian angels watching over him. He was also told all these trials and experiences were needed for him and they would help him later in life. It was a wonderful and special blessing. Paul and I received blessing us well to console and hearten us for the challenge ahead. That night they brought giant Easter bunnies to all of the ICU kids, Jacob got a white one and it bolstered me up as I hugged it since I couldn’t cuddle Jacob. Easter Sunday was fast Sunday and we knew many people would be fasting for Jacob on the day of his surgery. We called our family contacts and also Shahana to notify them of his changed surgery date and request Jacob be added to their fasts. It was a very special feeling to know he was being fasted over on the day of his surgery by not just our families but by our ward and friends.

Knowing we would need some comic relief Paul wore his black and white cow pants and I wore his brown “Got Milk?” cow pants. It was hysterical because the entire bottom shelf of the freezer was filled with my milk from pumping while I was unable to feed Jacob. The nurses expressed their amusement over our cow pants and we got a lot laughs. Many commented they thought my pants should have an exclamation point, not a question mark!

Early in the morning Jacob was prepared for surgery. Typically there are cardiac case managers, Leslie and Tami, who are with the surgeons during the surgery. They come out every hour to let the family know how things are progressing. Since his surgery was on Sunday this service was not available so a nurse, Crystal, was going to be checking periodically on his progress. We had the Nakaes’ cell phone with us to keep in contact with the ICU. She was going to call us with updates as frequently as she could. It took them a while to unhook everything and get his oxygen ready for transport, but pretty soon it was time to go. The operating room was downstairs and we walked with them all the way down. When we got to the room we couldn’t go any further. We gave him our last kisses and told him everything was going to be all right and watched as they took him into the room. I decided after this experience sending him on a mission would be a breeze. Now, there was nothing for us to do but wait, and wait and wait some more.

We went back to Jacob’s room in the ICU to get a few things and headed to the Starlight Lounge, an area for patients and families. It had a kitchen, computers, games, toys and a mini theatre. We decided to try watching movies to keep our minds busy so we didn’t go crazy from the tension of simply waiting. Mom and Dad got there at about 10:00; they had left after they sent the girls off to church with Tara and Trevor. We spent the morning watching movies and making a half hearted attempt at conversation. We would get occasional phone calls from Crystal updating us on where they were with the surgery and his condition. The day blurred around us as we were consumed with reflection and rumination.

We attended the Easter dinner hosted by one of the Aloha wards at 12:30. As people found out our son was in surgery they included us in prayers and gave us support and strength. Even though we weren’t able to go to church, it was wonderful to be surrounded by members. We could literally feel every prayer and fast on Jacob’s behalf. We were wrapped in a spiritual bubble and blessed with confidence the operation would be successful. After the dinner Paul, his parents, and I were conversing in the hall when a group of people came by delivering Easter baskets to the pediatric floor patients. They were all dressed up in Easter costumes and one member of the group was wearing a huge inflatable cow suit. It was hilarious, especially because of our cow pants. Many jokes were flung back and forth about finding the rest of our heard. It was an uproarious respite in the middle of a strenuous day.

Even though we were assured that all would be well, we were still anxious. Relief inundated us when Crystal called to say they were wrapping things up and everything had gone favorably. “I’ll call you right before they head up to the room so you can see him as he rolls by,” she promised.

The nurses warned us seeing him might stun us. His chest would be left open to allow for swelling of organs and also in case there were any complications. It would be covered with a protective covering and coated in betadine. When Crystal called we raced to the hallway outside the ICU so we could see him as they conveyed him to his room. It was bittersweet to see him go by. My mood was lightened to see him, but I wanted to scoop him up and enfold him in my arms.

We had to wait for another two hours before we were allowed to go into his room. It wasn’t as daunting as I thought it would be to see him with his chest open, but it was definitely taxing. I gawked with amazement at how pink and ruddy he looked. His complexion was extraordinarily fair. His toes were little glowing rosebuds. It was staggering to see the incredible change that took place with the surgery. We held his hands and feet and gave him kisses telling him he did well and now he could work on his recovery. It was outlandish seeing his chest was wide open and knowing his heart and other organs were so exposed. Naturally we couldn’t see them, nonetheless it was an astonishing experience. We opted to let Jacob rest and to get out for a little while since we knew he was going to continue to mend. Before we left I called my parents to let them know the surgery had been successful and Jacob was going to pull through.

It was dinner time and everyone had to eat. We had dinner with Paul’s parents at “Red Robin,” cow pajama pants and all. I hadn’t felt so optimistic and alleviated in a long time. I did us all good to be out of the hospital for a while and let the fears of the day diminish.

Sunday felt like an eternity. I was besieged by a fog of uncertainty and a hazy shroud hangs over my memories. I recall an intense gratitude to the Lord for watching over our Son, for the numerous prayers and fasts on our behalf, for all the support from friends and family, for capable doctors, surgeons, and nurses, and for the guardian angels I know were watching over us and Jacob.

We slept in the sleep room to be close incase there was a setback. When we went in to see him on Monday morning we were very relieved to see him still looking healthy. We met with the Doctors and they said he was making good progress and if he continued to improve they would be able to close up his chest on Wednesday. They had hopes of him going home on the following Monday or Wednesday if the recovery went smoothly. Because his chest was open, Jacob was heavily sedated and he could not interact with us. I wanted so badly to see some sign of life other than his heart beating under the protective film on his chest. I read him poetry and stories knowing he could hear my voice and hoping it would bring him security and courage.

Jacob was finally out of the woods and on his way to recovery so the nurses recommended we start to spend our nights at home. They stressed the importance of getting a good night’s rest while we had the opportunity and spending the much needed time with our children at home. Every night we spent at home we called the ICU to assure ourselves Jacob was doing well before we drifted into an impatient slumber. We would wake as early as possible and hastily prepared our return journey to the hospital calling again to substantiate the night had gone smoothly.

Tuesday Paul’s parents met us at the hospital to see Jacob one last time before going home. Mom and dad were granted special permission to see Jacob even though we were the only ones allowed in his room while his chest was open. The nurses arranged for of us to be in his room together for a few minutes to enjoy a family moment with Jacob.

When we got to the hospital on Wednesday they already had his chest sewn up. They used wire to close his rib cage and then sewed up the rest of his layers with dissolvable sutures. It sure was good to see him with his chest close. They started to gradually wake him up. He began to wiggle his toes and fingers and would try to open his eyes. It was so good to see him with his eyes open. I wanted to hear him cry and was excited for the day when they extubated him. The plan was to take the breathing tube out on Friday, out on the pediatric floor on Sat. and home on Mon, or maybe Wed.

Friday morning, when we arrived at the hospital, we found Jacob extubated, awake and doing great. We were under the impression they wouldn’t be able to take the tube out until late in the morning so we were ecstatic. He tried to cry but emitted no sound because his throat was hoarse after being intubated for such a long time.

Linda, the day nurse, told me I could hold him and she began to make the necessary preparations. I was so eager to cuddle him and my arms hungered for his presence. I wept from sheer joy as I snuggled him for the first time in 9 days. I struggled to maintain a portion of my composure and even brought my self to part with him so Paul could have a chance to embrace him. Paul’s eyes were brimming with tears and I saw every emotion pass across his face as he scooped Jacob into his arms. Around 6:00 p.m. we decided to let Jacob get some rest and Paul headed home to spend the night with the kids and watch part of general conference on Saturday. Since they had him off the ventilator, I stayed the night hoping to nurse him.

As we drew close to the shift change at 7:00 I observed Jacob and saw that he appeared to be exerting more effort to breathe. When the night nurse, Chris, came on my worst fears were confirmed. He didn’t say anything directly but I saw it written on his face as he watched Jacob laboring to breathe. When the respitory therapist came to do her treatment I noticed he was looking mottled in color. I felt the cold hand of fear gripping my heart. I managed to find my voice and stated, “His skin is looking mottled and pale.” She got the night nurse and I was forgotten as people huddled around his bed trying franticly to ascertain the problem. Jacob’s oxygen dropped to the high 70s and wasn’t coming back up.

Chris stuck his head out the door and hollered “Get the doctor in here stat!”
“Stat stat?” asked the desk nurse.
“Yes, stat stat.” was the short reply.

I was a wreck of nerves sitting in my chair watching everyone bustle around his bed. It felt much too similar to my recent experience in the ER. I sat in the corner praying and trying desperately to hold it together. Jacob’s numbers started to climb back up, and Chris canceled the stat and told them to page Dr. King, the doctor on call. Once things calmed down they realized I was still sitting in the room and knew how frantic I must be. Chris immediately walked over and informed me they were going to have to reintubate Jacob. He assured me this transpires from time to time and Jacob would be fine. I was asked to leave and told as I departed they would come get me when they were finished.

I was a basket case. My high hopes had been trampled under foot and were lying crumpled and disheveled around me. I sat and waited out side the ICU. I prayed and strove with fervor not to cry, reminding myself that setbacks were normal and Jacob would recover. I nearly lost it completely when I reentered Jacob’s room and saw him reintubated. I clung distraughtly to my memories of his blessing willing myself to be positive and give him encouragement. After I called Paul and told him what had happened, I stayed with Jacob until I was falling asleep in the chair. Knowing there wasn’t anything I could do, I finally resigned myself to the sleep room. Finding myself alone my guard crumbled and I was met with a deluge as I prayed myself to sleep.

I spent Saturday morning reading to Jacob and putting on my happy face, but I really wasn’t dealing well. I was a jumble of nerves. Every time the alarms went off I would jump an inch. I was glued to the monitor; staring at his oxygen making sure it stayed where it was supposed to. I was an exhausted emotional wreck anxious for Paul to come back to the hospital. When Paul finally arrived at about 3:00 in the afternoon I was desperate to get out and away from the beeping alarms. I felt a huge amount of stress enveloping me and smothering me with its blackness in the ICU.

Paul agreed I needed a break and we drove over to the Lloyd Center Mall. I realized since the previous Wednesday, 10 days, I had not been anywhere other than the hospital, home, and the car. No wonder I had felt a colossal amount of stress and was a heap of nerves. We purchased some books to read and I felt much better steeping out of my private four walled asylum. Paul insisted I return home to sleep and watch at least one session of conference on Sunday. I was feeling much better and figured it would be good for me. So off I went and Paul stayed with Jacob.

I had fun doing quiet crafts and activities with the girls while we watched conference at the Johnson’s. I honestly don’t remember much, but I do know I felt the spirit and felt strengthened and uplifted. After the first session I was anxious to get back to Jacob. I wanted to watch the second session of conference, but I wanted to be at the hospital even more. I enjoyed my time with Paul and Jacob reading books and playing games. They had plans to take him off the breathing tube again on Monday, and I was nervous and wanted to stay the night. Paul convinced me he wanted to stay because it was a shorter distance to work and he once again ushered me out the door.

In the morning Paul reported they had taken the breathing tube back out and he was doing well so far. They had to put him on the nasal c-pap to keep his lungs inflated. It is a little mask with prongs that go into the nose and a big tube going over his head. They had a little bonnet on him to hold everything in place. It blows air through his nose into his lungs helping the lungs to inflate. We were told the reason he started having problems on Friday was because his right lung had collapsed. Jacob really hated the c-pap. He lay in his bed wailing a hoarse pitiful cry. I felt so helpless watching him cry trying to comfort him unsuccessfully. With all the wires and tubes it was unfeasible to pick him up and hold him. I cherished a short moment as I snuggled Jacob while they put the bonnet and C-pap on him. Now it was a bleak situation of ifs. If his lungs cleared up he can get off the nasal c-pap. If he does well off the c-pap he can go to the floor. If things continue well on the floor then we can go home. We hoped for things to get better quickly and maybe we could even be out on the pediatric floor by Wednesday. I felt like I was watching a very large pot anxiously to see when it would boil as time wasted away around me.

On Wednesday his lung still looked poor; in fact, it had been worsening over the last couple days. We were tired and frustrated. All we wanted was for things to get better. Feeling at a loss we once again called on family and friends to fast for Jacob’s lung. I called mom and dad in the Philippines and asked them to join in the fast as well. Everyone rose to the occasion and we had many family members as well as friends and ward members fasting.

I planned to go to the Temple on Thursday since I couldn’t fast. We got to the hospital really early in the morning and Paul headed off to work while I waited to talk with the Doctor and see if any progress had been made. When Doctor LeGras came in he told me Jacob’s lung was much improved. I was grateful for our family and friends; I know the fast brought about yet another marvelous miracle. From that point on things began to steadily improve. The plan was to take Jacob off of the Nasal C-Pap in the afternoon after lunch. So I decided to head off to the temple so I could get back in time for him to come off the c-pap and hold him.

Going to the temple was a wonderful and special experience. As I waited in the chapel, I decided to pick up the Book of Mormon and do my reading for the day. I opened to where I had left off the day before, and began to read in 2 Nephi chapter 2. I was amazed as it was Lehi’s address to his son Jacob and was moved to tears as I read that marvelous chapter. I again felt assured all would be fine and this was the reason he was named Jacob; after the marvelous prophet of old. After going to the Temple I felt invigorated and more able to face the challenges that lay ahead and went back to the hospital.

When I arrived they already had Jacob off the nasal c-pap and I was able to hold and cuddle him. It was superb and I snuggled him for a long time. Paul came over after work and spent time holding him too.

When I got to the hospital in the morning I was greeted with another good report and told he appeared to be famished. I was able to start feeding him with a bottle. When it was very apparent he was eating well they let me nurse him. It was so wonderful to be able to nurse him again. I spent the day holding him enjoying no other commitments than catching up on missed moments with my boy. Dr. LeGras told us if he continued to improve we would be able to go out to the pediatric floor the next day, Saturday. They wanted to keep him in the ICU Friday to make sure he was going to thrive. He did remarkably; even though they had to keep him on just a bit of oxygen. Every time they tried to take him off he couldn’t get above the high 80s. We knew the time was nigh when we would go home and he would breathe completely on his own.

Paul came over Friday after work and spent some time with Jacob and went home to be with the girls. I felt torn in half. I wanted so much to be with Elizabeth, Dorothy, and Emily and yet I couldn’t bear to be away from Jacob. I felt like I needed to be in two places at the same time and sometimes it was hard to decide where I was needed the most. If there was any time where cloning would have been a blessing this was it.

On Saturday he was still looking good and we were told he would move out to the floor that morning. I was so energized. I could pick up Jacob whenever I wanted to now and hold him. He had most of his tubes off and I did not have to have someone hand him too me; it was also a lot easier to nurse him too. It was thrilling when we went out to the floor; we were much closer to going home now than we had ever been. We had our hopes for going home on Monday, only time and x-ray would tell. Paul brought up Elizabeth, Dorothy, and Emily in the afternoon to see Jacob. It was their first visit to the hospital because we did not want them to see him in the ICU with all the tubes stuck in his body. We were afraid that it would be too scary. The girls were eager to see Jacob again and smothered him in kisses.

With Jacob was on the pediatric floor and nursing I was nailed to the hospital. I had a little cot in his room where I could sleep, or at least wish I could sleep. Sunday morning his x-ray was still better, but not as good as Dr. LeGras hoped. There was still some collapse, and Dr. Legras was feeling Jacob probably wasn’t ready to go home on Monday. I felt deflated and the melancholy feel of the hospital was beginning to take its toll. Even though I enjoyed holding Jacob, it was difficult to not have anything to do but computer or television and boredom set in rapidly. I began to feel fed up and tired and prayed continually for the strength to withstand just a little longer. The Johnsons came to visit in the evening and I found my mood lifting as I had a distraction from the monotony of the day.

Monday morning Paul came in before work to talk with Dr. Legras. Jacob had received his x-ray and EKG and Dr. LeGras noted some improvement. He explained to us that even though Jacob was progressing he was hesitant to send him home in case something happened and his lung collapsed again. He told us it was our call, we could take him home on Tuesday or we could wait until Wednesday or Thursday which is what he would recommend. We decided we would definitely take the doctor’s advice.

I knew we made the right decision and yet it was still grueling for me. I spent the day in prayer pleading for patience and understanding, and feeling a need to be with my other children. I was not sure how much more they, or I, could handle. I asked Paul for a blessing on Tuesday morning and it alleviated my desperation. I was told the girls would be fine, I was needed here with Jacob, and the time for going home was nigh at hand. He also said the girls, Jacob, and all of us were surrounded and being watched over by guardian angels.

Jacob graduated from needing oxygen on Tuesday and on Wednesday afternoon they took off his oxygen monitor. They checked his oxygen occasionally when they were taking his blood pressure and other vitals. Now he was completely free of all tubes, wires and lines. I spent many of the hours that remained doing laps around the pediatric floor and dreaming of sleep. It seemed like every time I finally got Jacob to sleep someone was coming in to poke and prod him and then it would be ages before I finally got him to sleep again.

Thursday morning, April 14th, we got the great news we could definitely go home. After a final x-ray and echocardiogram were told once the final paper work was done we could get our meds and be on our way. I stopped by the ICU one last time to say goodbye and to thank the nurses for their vigilant care. I felt like we had taken up permanent residency at the hospital I had so much stuff to haul out to the car. I think I looked like an ant scurrying back and forth with each load. At long last, 3 weeks and one day after we arrived at Emmanuel, Jacob and I merrily went on our way.

On the way home we stopped to say hi to daddy at work and to meet all the wonderful people who had prayed for him and been supportive of Paul during our ordeal. Paul was such a proud papa showing off his amazing miracle.

It was magnificent to be home again, with Jacob to stay, and to have my girls back too. I was overjoyed to be a complete family again. We were told we shouldn’t take Jacob in large groups of people for 6 weeks, so we were home bound for quite a while.

Since we have been home we have seen and learned about even more miracles. A family member who hadn’t prayed in a long time began to pray and asked co-workers to join in prayer for Jacob. Members of my old orchestra, Hillsboro Orchestra, had been praying for us and concerned for Jacob’s well-being. Bridges were formed as people from many different religions united in prayer on his behalf. Jacob had become known as the miracle baby at our Pediatrician’s office and in the ER. I took Jacob in to see the nurses at the ER and it was spectacular to be able to say thank you and for them to see Jacob looking so healthy. It meant a lot to them to see the miracle they helped bring about. The prayers continue and Jacob’s story is far from over.

He is a big boy now and has come a long ways since he came home from the hospital. When he came home he was still under birth weight at just barely over 9 lbs. He has grown like a weed and is healthy, alert, and happy. His baby blessing took place on Sunday the 29th of May, and what a special event that was. We met the sisters from the Four Corners Ward who had donated the blanket, and we were surrounded by many friends and family.

I know there will be many more miracles to come of Jacob’s story and it will never really end. But as for now, this chapter shall come to a close. We give thanks and praise everyday that we have our Jacob with us and often times I can scarcely believe the marvelous miracles we witnessed. It feels surreal often times and we wonder if it was some crazy, terrible, wonderful dream and then we look at his scar and realize it was very real. What a testimony it has stirred in me of the love of our Heavenly Father and how he knows each of us by name and knows our needs. There are miracles everyday and angels surrounding us. I will never know of all the people who have been touched by Jacob’s miracle and the ripples will last forever and reach for generations to come.

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22 Comments

Filed under CHD, Children, Heart, Jacob, Miracles, Parenting, Religion, TGA

22 responses to “Jacob (A Story of Miracles)

  1. Julia,

    This was so like reading my own story. I cried at many points because the emotions and experiences that I had with my daughter M were so similar. My eyes are still brimming with tears… I need to write and post her story, but have not done so. I need to discuss with my Husband if he feels comfortable with my sharing… You have inspired me to share it, I hope that when you read what I write, you will know for a certainty that someone knows exactly how you felt because I felt the same thing. Thank you for sharing with us, if nothing else, I now know that I have a friend who knows what is in my heart. Thanks for that.

    April

  2. what a painful, but beautiful experience.

    i’m so overwhelmed by the history. you shared this beautifully, julia. thank you.

  3. Thankyou for sharing, Julia. I’m so glad to hear your story. I can relate in many ways. Thank you for writing in such detail, I felt like I could have been there. It makes me want to write down, more specifically, memories of our time in hospital. I have a poor memory.

    I can imagine that having three other children at home would make you feel torn in two. Thankfully for us, Elijah was not even two yet when Joseph was born, so I really don’t think he had any idea how long he was away from us. We both stayed in the hospital for the whole 18 days….Elijah would come visit us every second day. I remember one day missing him so much that when I laid eyes upon him, I burst into tears right in the hallway of the hospital. Our cardiologist just happened to walk by at that very moment and witnessed it all! I was a little embarassed to say the least.

    Anyhow, I shouldn’t ramble on this way, I just wanted to thank you. Thank you!!!!

  4. Thankyou for sharing, Julia. I’m so glad to hear your story. I can relate in many ways. Thank you for writing in such detail, I felt like I could have been there. It makes me want to write down, more specifically, memories of our time in hospital. I have a poor memory.

    I can imagine that having three other children at home would make you feel torn in two. Thankfully for us, Elijah was not even two yet when Joseph was born, so I really don’t think he had any idea how long he was away from us. We both stayed in the hospital for the whole 18 days….Elijah would come visit us every second day. I remember one day missing him so much that when I laid eyes upon him, I burst into tears right in the hallway of the hospital. Our cardiologist just happened to walk by at that very moment and witnessed it all! I was a little embarassed to say the least.

    Anyhow, I shouldn’t ramble on this way, I just wanted to thank you. Thank you!!!!

  5. Julia, you’ve shared Jacob’s story in such a beautiful way. And your faith shines through it all. A song we sing at church kept echoing through my mind as I read your words: “Our God is an awesome God, He reigns from heaven above. With wisdom, power and love, our God is an awesome God”. Amen.

    … and thank you for visiting my blog.

    Happy Easter!!

  6. Thanks for the story dear.

    Our prayers are with jacob and your family

  7. Wow!!! Your son came home from the hospital exactly a year after my son came home from the hospital from his first surgery. It was the day after my birthday and boy was that an amazing present. I can’t imagine going through that with other kids at home. My son was our first kid so we were able to concentrate all of our time on him. I also noticed that when my ward would hold fasts for us things seemed to get better in amazing ways. Thanks for sharing your son’s story.

  8. Tracy

    I truly enjoyed Jacob’s story. I had tears in my eyes many times throughout it, because you are such a gifted story teller and I felt I was right there with you. I have been there myself, feeling a lot of those same feelings with our baby Dominic and our experience with his surgery and recovery. We have 2 older sons,ages 7 and 5 yrs so I truly know how it was to feel torn… not really knowing what the right choice was, but feeling you had to stay with your baby.
    Thanks so much for sharing your experience…and in such detail.

  9. Rebecca Pickering

    Wow, this was very similar to our family’s experience. Elaney is 12 and had the arterial switch at 5 days of age. She has TGA and a bicuspid valve. She also has Juvenile Rheumatoid Arthritis which is not related to the heart prob. Thank you for sharing your beautiful story. If you ever wish to contact me, please do.–Rebecca(rebpick1artist@yahoo.com)

  10. OMGoodness!!! I am so touched by this you don’t even know!! I wish you all the best of luck and best wishes from the mackey family!

    Heavenly Father does know us sooooo well and I am so happy to be a member of his church! Your story just trippled the amount of my testimony!! God bless you all and I hope to meet that little miracle some day!!
    Stephanie
    Queen Of Cute Shoes

  11. marsha bartels

    Thank-you for sharing your story it truly blessed me and yes, I can relate just a bit when my son who is 8 now was at Emmanuel having a head surgery at 8 months old. Although what you went through was quite devestating. It was great to hear the awesome outcome of God’s blessing. But, not only that it was great to hear how you all pulled together and you had such a network of friends, family, and church and all the prayers, that was an encouragement for what I am going through right now in my life some very hard things. Thank-you

  12. Thank you for posting. I could so relate to so many aspects… the CPAP, the collapsed lung, the pediatric floor stay.

    In fact, we went to the pediatric floor very late on a Saturday afternoon. The one thing they were watching at that point was a right collapsed lung. They began weaning oxygen on the floor and probably by Monday he was off oxygen. By a miracle, from Monday to Tuesday, his collapsed lung & congestion cleared to the point they did not even do a chest x-ray on Tuesday because it sounded so clear on exam. I remember by Tuesday, he was free of almost all his lines, except the terrible looking PIC line, and of course that darned pulse ox monitor. We got the orders for the PIC line to be removed on Tuesday afternoon with hopes to discharge on Wednesday, and the nurse suggested the Hep-lock it in case something happened and we did not get to go home. They did and he was finally free of all lines & wires! Like you, i wanted to carry him everywhere!

  13. Julia – thank you for your story. I too live in — and my son Jacob born 6-6-7 was diagnosed with a DOLV and a Hypoplastic Right heart. I feel like I have walked in your shoes. We were fortunate enough to leave at 10 days old and surgery at 2 days old. We expect another surgery in October and the final at about age 3-4 yr. Emanual Hosp. are wonderful and we couldn’t be in better hands, may God bless them all.

  14. Julia, it was so good to read about your experience. I have heard parts of the story before, but it was interesting to hear the whole thing and understand more of what you went through. I related to a small extent because we had a scary situation with Sammy in the hospital after he almost drowned when he was 3 years old. Fortunately, that nightmare only lasted about a week, but I remember those feelings of realizing that it was worse than I thought and having the doctors and nurses preparing us for the possibility that he wouldn’t make it. It was all kind of like a dream for us, too, but I still remember the fear and the helplessness I felt, as well as the appreciation for the support we received and for the miracles that came together to keep him alive and well. Thanks for sharing your story. Jacob is a such a special boy!

  15. What an amazing story. Thanks for sharing it. (I am Kathy’s sister, Heather)

  16. Corrie

    Thank you for sharing your amazing story! My son Joshua was also born with TGA in Aug 2007 and like Jacob his heart condition was not identified right away. Thankfully he pulled through brilliantly and is now a happy healthy 11 month old. The strength of these ‘heart kids’ is inspiring. Thanks again for sharing and all the best to you and your family.

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  18. I am in the process of creating a Heart Kids link list on my blog and I was wondering is you would mind if I added Jacob to that list.

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  20. Janelle

    Thank you for sharing Jacob’s story. I’ve got a nasty cold, which means I’m already really drippy and on edge emotionally, so I just finished crying all the way through this. At least I already had a roll of toilet paper next to me. What an incredible series of miracles. And how very much you have been through in the last few years. You are indeed watched over by guardian angels and loved by a caring Father in Heaven.
    Love you!

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