Olivia
It was a warm, sunny day in May. May 2nd, 2007 to be exact. That is the day that changed our lives forever. My husband Steve and I had our first ultrasound appointment. We were so excited, we could hardly contain ourselves. It was that day we were going to catch a glimpse of our unborn angel. I had planned to decorate the nursery, and press "continue" on the umpteen online shopping carts I had chuck full of stuff, just as soon as this appointment was over. We just needed to know one vital detail. Would the nursery be pink or blue?
Now, it's not that we cared whether or not our baby was a boy or a girl, we just wanted to get as much done ahead of time as we could. We were told things get pretty hectic afterwards. All we really cared about was that this baby was healthy.
When we walked into the ultrasound room we noticed a large monitor on the wall. There was a comfy chair next to it for Daddy and an examining table propped with pillows for Mommy. Now, if we only had some popcorn we'd be set.
As we looked up at the screen, we saw this tiny, beautiful, perfect little baby girl. We could see her nose, lips, feet, and even these tiny little fists. I felt such a connection to this little miracle inside of me. My husband and I gazed deep into each other's eyes with such happiness. We couldn't quit smiling.
After the ultrasound was done, we waited back in the examining room for the doctor. We giggled and talked about all of the wonderful things we were going to do for this baby. About thirty minutes later she came in and sat down. She notified us the technician performing the ultrasound was having trouble locating all four chambers of the baby's heart. They were not sure whether it was because the baby kept moving or if there might be something wrong. They said we needed to go to the University of Iowa Hospitals and Clinics for further testing.
Now, I am not sure if we were just in denial at this point, or if the doctor really did make it sound like everything was probably fine. But, we were happy. We went shopping directly after our appointment. We laughed and smiled as we picked out pink paint and butterfly wallpaper. It wasn't until five days later our world came crashing down.
It was May 7th, 2007 we were at the University in Iowa City getting another ultrasound. Only this time we really couldn't see much. There were no 3-D images of this perfect little baby bouncing across the screen, no giggles and smiles being exchanged. Just silence as we starred at this black and white screen while the technician studied each part of what looked to be our daughter's heart. After she was done, the doctor, a high risk obstetrician, took a look for herself. I knew at that very moment there was something terribly wrong. Instantly, my eyes swelled with tears.
"Your baby has a severe congenital heart defect known as Hypoplastic Left Heart Syndrome," she said. My mind raced. I felt dizzy. What? No. Hypoplastic Left Heart Syndrome? I've never heard of it. This can't be. "She still has a chance, doesn't she?" I choked. As I look back I was more begging, than asking.
The doctor looked me straight in the eye, "A slim one," she said.
A slim one? You mean to tell me this perfect, innocent angel only has a small chance of surviving? I could not speak. My head fell into my hands as I wept without saying a word. I felt my husband come and put his hand on the small of my back. He too was trembling.
"There are still options," the doctor continued, "We still have another few weeks if you would like to terminate-"
"No!" Steve and I shouted, before she could even finish her sentence, "That is not an option." How could she… no, how dare she, even say that?
Another option was to meet with a group of Pediatric Cardiologists. We agreed and waited around until they could speak with us. In the mean time we sat alone in a private waiting room. We held each other tightly as we cried. It wasn't just a few tears falling from our eyes. It was uncontrollable, body heaving, God help us cries. I had never been so sad in all of my life. I buried my face in my husband's chest. I hoped if I buried myself deep enough this would all go away. I would just wake-up and realize it was a dream, no a nightmare.
About an hour later we were called into a small room in the Pediatric Catheter Lab (This is a place we soon became very familiar with). An intelligent young doctor and his colleagues spread several pictures out on the examining table. One was a picture of a normal heart. The other three were pictures of what they could do to try and save our daughter's heart. Without surgery, she could not survive. At best, she would live for only a week. That just wasn't long enough for us. We knew we had to give her every chance we could. She deserved that. This left us with two options.
The first option is The Norwood Procedure. This is a stage of three surgeries. The first one, called The Norwood, is done only a few days after birth. It is the most dangerous and the most complicated. In fact, the cardiothoracic surgeon said it is the most serious surgery there is…period. The next one is done at about 6 months of age, it's called The Glenn. It will still require a week or two in the hospital, but a piece of cake compared to the first. Last but not least, The Fontan is done at around 3 years of age or 35 pounds. This last one is a little more complicated than the second, but still not as critical as the first. The Cardiologists told us if our baby was to make it through the first surgery she would have an 80% chance of survival. To me, that's more than "A slim one." However, some babies are not candidates for The Norwood Procedure. In these cases a heart transplant is required. The doctors said that at this point it looked as if she was a candidate for the surgeries, but they would not know for sure until after she was born.
For the next 19 weeks we made around 15 trips to Iowa City for appointments. Sometimes there were even two or three appointments in one day. We had fetal echocardiograms, ultrasounds, fetal stress tests, and check-ins with the high-risk obstetricians. Having to balance this, home, and work was a challenge. Let's just say life was getting a whole lot busier. But, we were thankful to have found such a great team of doctors and nurses. They knew what steps needed to be taken in order for our daughter to have the best possible outcome.
Our due date was the 23rd of September. But once things got closer the surgeons and us talked about an induction. They said this would be the safest option since our baby would need an entire team of doctors present. This includes the high-risk obstetricians, cardiologists, neonatalogists, and surgeons. Plus, she would need certain medications immediately after birth.
September 19th was the day. Steve and I grabbed our bags and headed to Iowa City. We arrived around 8:00am and were immediately checked into a luxury birth suite. It was perfect. It had a great view of Kinnick Stadium where the Hawkeyes play for my husband and a large whirlpool tub for me.
Around 9:00am the nurse came in to start an IV. We decided to begin things with a little Pitocin. Youch! That's all I have to say…Throughout the day many family and friends came to visit as we awaited the arrival of this special angel. We were expecting her sometime that evening. However, day turned to night and she decided she wasn't quite ready to come into this world.
Finally, on September 20th, 2007 at 5:27pm, after 35 hours of labor, Olivia Kathryn Faye Spencer was born. I was able to catch a quick glimpse of our angel before she was whisked away, but I was not able to hold her in my arms. Something I hope no mother ever takes for granted.
The echocardiogram determined Olivia does have HLHS and was a candidate for The Norwood Procedure. They started her on a medication called prostaglandin to keep the PDA open until surgery. This medicine causes apnea, so they ended up having to intubate her right away.
A few hours after birth Steve and the nurse helped me get into a wheel chair so I could go see my baby. By the time I got down there she was already intubated and had a feeding tube thru her nose. Even with all of this, she was the most beautiful miracle I had ever laid eyes on. I knew from that moment on I would spend the rest of my life making sure this little girl would be surrounded by love.
We pulled a few chairs up to Olivia's bedside. Neither of us said much. We looked over all of the equipment and monitors, slowly learning what each one does and what each alarm means. Once we were sure she was in good hands we headed back to the mother-baby unit to get some rest.
The next morning two Pediatric Cardiologists came to my room. The doctors wanted Olivia to have a heart catheter and perform a balloon atrial septostomy to make the opening between the left and right side of the heart a little bigger. This would also buy us a few more days until surgery. They sat down with their stack of paperwork and began explaining the details and risks to me. It sounded horrific. They marked a spot on the back of the sheet where I was to give my consent. I didn't want to. What if one of these dangerous risks actually happened? I had to sign it. I knew Olivia had to have these procedures. There was no option. I scribbled my name as fast as I could and handed the pen back to the doctor. She said they would contact us once they were ready to take Olivia to the cath lab. Steve was already at the NICU (Neonatal Intensive Care Unit) visiting her. I quickly got dressed and made my way down.
As I peered through the glass door to her tiny little room, I saw Steve sitting at her bedside reading a book we had brought to the hospital for her. She was wearing a pink University of Iowa Children's Hospital hat the nurses gave her. She looked so adorable. I just wanted to pick her up and hug her. But I couldn't. It would be too much stimulation for her fragile little body to take.
Later that morning Olivia went in for the heart catheter. It only lasted a couple of hours and things went well. She slept quite a bit as they had her pretty sedated. I had not seen her eyes open at all yet. That evening the nurse said there was talk of us moving up to the PICU (Pediatric Intensive Care Unit) the day after tomorrow. They usually transfer patients up there a day or two before surgery so they can get to know the staff. This meant surgery would be within the next three days.
Steve and I spent a lot of that evening in Olivia's room. We had a great nurse. She sat and talked with us about regular, everyday things. We even got to change Olivia's diaper for the first time that night. It was a team effort. I held her legs up and Steve slid the diaper underneath. I know it sounds trivial, but it was a really big deal to us. That was the first time we ever got to do any sort of parenting for this beautiful daughter of ours. We hadn't even got to hold her yet. They treated her so fragile. But this nurse let us have a chance to feel like Olivia's mommy and daddy. It was a great night.
I was discharged from the hospital the next evening, so we stayed at The Ronald McDonald house for the night. We had put our names in at the hospital guest house, but no rooms had come available yet. Those were nice because they were located right in the hospital. You could make it from there to the NICU or PICU in two minutes if you needed to.
The next day Olivia was moved up to the PICU. Her room was right at the front of the unit where the main nurse's station is. I later found out this is where critically ill patients are kept. The room was gigantic. There was even a couch that folded into a bed and a recliner. It was definitely more family friendly. Steve and I spent the entire day hanging out in the room with Olivia. She still slept most of the time. They wanted her to stay pretty sedated so her body would relax and her heart wouldn't work too hard.
That afternoon we received a call that the hospital guest house had a room available. We took it! It was like a hotel room. There were two queen beds, a bathroom, desk, and a television. Maybe we would sleep a little better tonight. We stayed with Olivia until well after 2:00am reading and talking to her. We also got to know our nurse Krista pretty well. She took great care of us and soon became part of our extended family.
The next morning the PICU staff doctor came in and talked with us immediately after we got back. He said they are definitely doing the surgery tomorrow and the cardiothoracic surgeon and his staff would like to meet with us in an about an hour to go over the details.
We were nervous. Was this really happening? No matter how much research we did and how prepared we tried to make ourselves, this was still just so surreal. So many emotions were stirring inside of me. I just kept telling myself we had to do this. I remembered the sign from our church I read all the time when I was pregnant. "Worry ends where faith begins." I repeated that to myself quite a bit that night.
A little over an hour later, a tall well groomed surgeon, and a sophisticated nurse practitioner, entered our room. We shook hands and had a seat back in the couch area. The surgeon had a small computer with him. He was able to bring up detailed pictures of the surgery and explain to us what they are going to try and do. It was all very complicated and very detailed. It was rather amazing, though. This man was going to give our daughter a second chance at life. It was up to him to fix her broken heart, be it no bigger than an acorn.
After this, the nurse practitioner went over the paper work with us and what to expect afterwards. She said Olivia's chest will be left open for a few days after surgery because of all of the swelling. She will have a piece of tagaderm tape over the opening. There will also be quite a few IV medications, pacer wires, and a breathing tube.
Later that evening our nurse asked if we would like to hold Olivia. Of course we did. We had been waiting for this moment for so long, for too long. I couldn't wait to feel her in my arms. The nurse went to get some help and Steve grabbed our camera.
It ended up being quite a bit of work. We needed two nurses in order to move Olivia since she had so much equipment. One to pick Olivia up and one to grab all of her cords and wires. The nurses were used to doing stuff like this and made it look a lot easier than it was.
A few minutes later I was holding my beautiful baby girl for the first time. Oh how I had yearned for this. She was so perfect, such a miracle. Her hair is dark like mine and Steve said her eyes are blue like his. Her eyes were still closed tight, dreaming of a better place, I hoped.
Around 8:00am on September 25th, 2007 Steve and I walked with Olivia down to the operating room. It was so hard seeing her go thru those doors. It tugged at my heart. Why did she have to go though this? It isn't fair. We should be taking her home to meet our friends and family for the first time. Not taking her down the hall to have major heart surgery. Every two hours the nurse practitioner was to call us with an update. Let me tell you, we waited by the phone. This was the hardest day of our lives. We were terrified.
The first call was around 10:00am. She said they had Olivia's chest open and she was now on bypass. Everything looked good. We took a deep breath. I went over to the laptop to update our Carepage. We had so many people praying for us.
At about noon we noticed the phone hadn't rang. I reminded myself they were probably just a little preoccupied and would be giving us a call shortly. 12:45pm rolled around and still no call. Why hadn't she called yet? Is Olivia ok? I hope nothing happened.
I began to get a little antsy. I really couldn't take it, the not knowing. I picked up the phone and called the nurse practitioner's pager number. She answered the phone a few minutes later and apologized for not getting to us sooner. She said things were going just as well, if not better than expected. They were about half finished now.
Steve and I felt a bit of relief at this point. It was nice to hear her say things were going so well. We were witnessing another miracle that day. God picked us for a reason. We just weren't quite sure what that reason was yet.
Around 4:00pm they notified us Olivia would be coming back up to her room in the PICU at about 4:30pm. The surgery went well and she was taken off from bypass successfully. They were just making sure all of bleeding had stopped and then they would be on their way.
Thank God, our baby was alright! She made it through her first open heart surgery. The doctors let us know these next 24 hours were very critical. We were nowhere near being out of the woods yet. But we had definitely overcome one giant hurdle.
We walked through the hall down to Olivia's room. It was filled with doctors and nurses working like clockwork to each get done their specific tasks. We counted 16 doctors and nurses in that room at one point. After a baby comes back from The Norwood they are usually on quite a few medications as well as oxygen. Olivia had four IV stands with her, each holding four medications. She was also intubated and had several chest tubes and pacer wires. The wires were there "just in case." Her chest was still wide open. There was a piece of clear tagaderm over the opening, but you could see Olivia's beating heart. It was a once in a lifetime opportunity. The first time I saw it my knees buckled, but then a sense of amazement and awe set in. We had one special little angel lying there.
The nurses came in to draw labs every hour that night. They took her blood pressure and other vitals every hour as well. The alarms on the monitors were going off quite frequently. This was all pretty chaotic, but normal the night of a Norwood, we were assured. They took great care of Olivia. They knew how special these heart babies are and made sure to give them extra love and attention.
Around midnight the nurses started pleading with us to go down to the guest house and get some rest. We wanted to spend the night in Olivia's room, but things were pretty hectic. After a little while longer we gave in. Although I don't think we slept any better down there. We were just so nervous, as I am sure any other parent would have been.
Over the next twenty-one days Olivia remained in the PICU. She was hanging in there, fighting for her life. We were in such amazement of this gift from God. She wanted to live. I knew this little girl was going to grow up and be something very special.
Olivia was on a medication to keep her paralyzed for almost three weeks. It was hard watching your baby just lye there and not be able to move. One Saturday morning the nurses turned the paralytic down to see if Olivia would respond. They just needed to make sure she was able to move and then they would turn it back up. After about thirty minutes she started twitching her toes and fluttering her eyes.
"Kendra, come here!" Steve shouted, excitedly, "Her eyes are open!"
I ran over to her bedside as fast as I could. Olivia's eyes opened and looked at me for just a split second before nodding off again. It was the first time I had ever seen her beautiful baby blues. My heart melted. I finally got to see my daughter's eyes.
The nurse came in and turned the paralytic back on a few seconds later. They still didn't want her body working too hard. She also received several blood transfusions and remained intubated until just before we were scheduled to move to the step-down unit. This unit has one nurse per four patients. It is where they teach you how to take care of a sick child and prepare you for home. They were going to teach us how to administer the seven medications Olivia would be taking twice a day, put in an NG feeding tube, as well as what to look for in cardiac arrest and heart failure. It is meant to last about a week or two and then most of these patients are well enough to be discharged.
However, Olivia was not quite ready to go home. She was not gaining as much weight as Cardiology would have liked her to. She was also vomiting after every feeding, which is a sign of heart failure. They kept adjusting her medications and slowly increasing her feedings. She took all of her feedings thru the NG tube in her nose at first, but was now able to take an ounce or two of formula on her own by mouth. Steve and I had to learn how to put the NG tube down and be able to do it before we could go home. It was awful. She screamed at the top of her lungs every single time. They assured us it wasn't hurting her, it was just uncomfortable. The last thing we wanted was to be causing our baby any distress after all she has been through. But we knew it had to be done, so we did it.
Life on 2JCP was very different from the PICU. There wasn't a nurse sitting right outside your door. Instead she had to take care of four sick children all in a twelve hour shift. Don't get me wrong, these doctors and nurses were just as good as the ones in the PICU, they were just a whole lot busier. I couldn't leave Olivia's room most of the time because I didn't want her to be alone. I knew the nurse couldn't just stay with her; she had too many other patients. Sometimes, if it was slow, we would have two patients to a nurse and I might be able to grab a bite to eat real quickly. My mom also came to stay with me after Steve had to go back to work. That helped out quite a bit.
I had hoped we would be discharged by Halloween that year. We had bought Olivia this gorgeous little pumpkin fairy costume to wear. The days kept coming though, and soon it was the last week in October. I had to go back to work in two weeks, my maternity leave was just about over. We were starting to get really frustrated. We didn't get to hold our child until she was five days old. I didn't get to see her eyes open until she was almost three weeks old. We still haven't even gotten to take her home and get to know each other. I took a step back and realized how selfish I sounded. All these people were trying to do was make sure our daughter was well enough to go home. We came to the agreement that after one week of steady weight gain they would release Olivia.
October 31st came and we dressed Olivia up in her pumpkin fairy costume. A lot of the children in 2JCP were dressing up for Halloween. The Child Life Specialists at the University were even going around handing out Halloween costumes to any of the kids that wanted one. That was one of the more fun days we had at the hospital. We also found out we would be going home the next day.
November 1st, 2007 we were finally released from The University of Iowa Children's Hospital. There were a lot of emotions involved that day. We were so relieved to finally be able to take our baby home. But we were also very scared to go home without those doctors and nurses. Could we do it on our own?
Right away we tried to set a schedule. We were to feed Olivia every three hours around the clock. This meant we had to set our alarm at night and take turns sleeping in shifts. One of us would stay downstairs with her while the other one tried to get a few hours of sleep. Olivia would fight it every time we had to feed her. After some coaxing she might take an ounce by mouth, the rest went down the tube. She would scream the entire time. I don't know if it hurt her belly or she just didn't want anyone messing with her. She was still throwing up four or five times a day as well. But the doctor's said we had to keep doing it, feeding issues are very common in cardiac kids. The most important thing was for her to continue to gain weight and be strong for her next surgery.
Our lives went on like this for several weeks. We were getting wearier by the day, but we kept on going. After about a month I began sleeping in the recliner with Olivia in my arms. She would usually wake-up once an hour, plus we had to fit all of her feedings in anyhow. At that point in time it made more sense. Plus, Steve was able to get a good nights rest and help me with house work during the week. When I went back to work I started going in for three ten hour days, which left me with two extra days at home per week.
Olivia was not allowed to go to daycare so my mom watched her at our house while we worked. Cardiology said it was too dangerous as it would expose her to a lot of germs and illness. We didn't want her getting sick at all before her second surgery. We had to be very careful; making sure everyone entering our home was free from illness. Some people thought we were being a little paranoid, but we were only doing what we were told. The doctors made these rules for a reason. Steve and I read that some of the hospitals with high success rates make these babies stay until after their second surgery. Could you imagine having to stay there for six months? I thought six weeks was bad!
On January 29th, 2008 Olivia went in for another heart catheter. She was becoming increasingly fussy, so they doctor's thought it might be time for here second surgery. It would be a little earlier than usual, but not too far off. We all just wanted Olivia to start feeling better and being able to enjoy life.
The catheter went well. They took her in at about noon and told us to plan on it taking around and hour. They weren't going to put Olivia completely under anesthesia, just something to make her very sleepy. After about an hour and a half they paged Steven and me to come back to the Cath Lab. The doctor explained to us that her main artery has a coarction. This is basically an area where it has become narrow. He told us they could try putting a balloon up there and stretching it out or we could opt for an additional surgery. We definitely didn't want another surgery, so we gave him the go ahead.
After another hour and a half we came back to the Cath Lab again. They were able to stretch the area to a satisfactory size. We then went to 2JCP where we spent the night. It seemed like we had just been there yesterday to both me and Steven.
Once we got home Olivia seemed to be eating a little bit better. We were even able to take her feeding tube out. She was just barely maintaining her oral intake, but it was better than dealing with that tube. That was something all three of us weren't very fond of! She was also sleeping a bit better too. She was still waking up three of four times a night, but it was better than every hour.
The following week Cardiology called to set up a date for her next surgery. February 19th was the date. We were to plan on a ten to fourteen day hospital stay this time. We definitely weren't looking forward to it, but we had heard it would be much easier than the first. We could do two weeks standing on our heads!
The time had come before we even knew it. We had made the usual arrangements for work and our pets and packed our suitcases with a few weeks worth of clothes. Her pre-op appointment was actually the day before so we headed down a day early and got a hotel room. The weather was awful last winter, tons of snow and ice covering the roads.
We had to be to the hospital at 7:00am the next morning to get checked-in. They took Miss Olivia into the OR at 8:00am. I got to go with her until she fell asleep. They had me put on a gown and mask, wrap my hair up, and mosey on back with her in my arms. The poor little sweetie was so hungry. She wasn't able to eat for 6 hours. When they put the Gas Mask on her she started sucking, like she was drinking her bottle. Poor little sweetie!
At about 10:00am the nurse called to say that the actual surgery had begun. It only took about six hours this time. It was late afternoon when they wheeled our angel back up to the PICU. She did phenomenal; better than we could have even hoped for. She was already extubated when she came back from the operating room! Whereas last time, she was intubated for three weeks. Her eyes were also open, and she let out the tiniest little cry when I saw her. She was so brave! I knew God had her in the palm of his hand and he was guiding her thru this tough, frightful time.
On February 23rd, 2008 only four days after heart surgery, Olivia was released. I think Steve and I were in shock. Compared to the last time things were so much easier. It was over in a flash! I kept asking if they were sure we could go home already. The doctors assured us they had no reason to keep her there and we could go home and enjoy ourselves. We were ecstatic. Olivia's next surgery wasn't going to be until she was around three years old. This meant we had plenty of time to play and relax until we had to come back there.
Things were a lot different when we first got home. She continued to eat better and even started smiling more. We were very pleased with how well things were going. However, her health slowly started deteriorating after about 3 weeks. I was on the phone with her Cardiologist in Cedar Rapids at least once a week and usually at her Pediatricians office once a week as well. At first they thought she had acid reflux, so we pumped her full of some additional medications. Then, it was thought to be a sinus infection, a lingering cold and finally…just part of being a cardiac kid.
By the end of March Olivia was no longer wanting to play or smile. She didn't like drinking her bottle either. However, she was still maintaining her weight so we did not have to put the NG tube down yet.
By mid April we were desperate. She wouldn't eat, wouldn't sleep, and was vomiting all the time. We had to change our clothes five or six times a day. She still slept in my arms in the recliner and was back to waking up every single hour. She even got to the point where she would not lay on her right side. We were very concerned.
On Wednesday, April 16th my husband drove Olivia down to her Pediatricians office where they again discussed our problems. It was decided to go ahead and put the NG tube back in. This didn't help things what-so-ever. The only difference was she began vomiting a larger volume of formula since we were forcing additional feeds down the tube.
On Thursday, April 17th Olivia decided she had enough. We were having trouble with the NG tube, so Steve and I decided to back it out a centimeter and re-tape it. Olivia usually did get upset when we messed with the tube, but it was draining so slowly we thought it might be in too far. Steve held her hands while I quickly pulled it out and re-taped it.
Olivia was extremely upset. I walked around the house, bouncing her in my arms. She usually calmed down after a few minutes. But this time she just kept on screaming. I turned her around and looked at her face. It looked blue. He eyes looked like they were glazing over as well. Was she blue? Am I being paranoid? No. Something's not right here.
I yelled for Steve. "Something is terribly wrong here!" I screamed.
He came running over and in a panic agreed she didn't look right. He picked-up the phone and dialed 911. The next three minutes seemed like an eternity. Her cries began to get weaker, her eyes closing. Was she going to make it? Where are they? Hurry! Should I just put her in our car and go?
I could hear the sirens now, slowly getting louder. They pulled up and we jumped in the ambulance. They took Olivia to Virginia Gay Hospital in our hometown to get stabilized. Her oxygen saturations or SATs were at 50% upon arrival. Hers are normally in the 80's while the rest of us usually have around 100%. No one knew exactly what was happening, they just wanted to get her on some oxygen and get on the road to Iowa City.
It was raining hard that night. I could feel the ambulance hydroplaning over the road. We must've been going close to 100 MPH. Once we made it to the University we were transported up to the PICU. We saw many familiar faces as were wheeled in. Immediately they started doing different tests. Blood work, EKGs, echocardiograms, and finally a chest X-ray. When the results were in the only test of relevance was the X-ray. The one test we hadn't received in the last month!
It showed a large left sided pleural effusion caused by chylothorax. The fluid had actually collapsed her left lung and pushed her esophagus, heart, and right lung way over to the side. They said she was lucky to be alive. At 11:00pm they put in a PICC line and a chest tube. They drained 450cc of milky fluid off of her left side. That is a pound of fluid! No wonder she was still maintaining her weight! We hadn't seen her smile for weeks. All of us have been trying so hard to get to the bottom of this; it was a relief to finally find out what was wrong. After we got settled in at the PICU Olivia flashed us a half smile, as if she was saying thank you.
The plan was to watch the output from the chest tube and make sure her SATs stay between 75-85 %. They had hoped the effusion was pretty much drained and we would be released in a few days. They thought the plural effusion was caused by either something getting nicked during her second surgery or just a small, unknown leak which is filling up her chest cavity with fluid. However, she will have to be on a low fat diet to prevent this from happening again until we were sure it was completely dried up.
For several days we gave her this special, low fat formula called Portagen. It is supposed to taste pretty horrible, but she tolerated it. They also added an IV medication called Octreotide at a low dose. However, the chest tube was still draining quite a bit. After about a week they decided to do another heart catheter to see what the problem was.
When they went in they found that her left subclavien vein was very narrow and needed ballooned. There were also several collaterals, or growths, that needed to be coiled off. They had hoped this would put a stop to the Chylothorax. We were all very hopeful.
After several days the chest tube kept on draining. We were starting to realize this wasn't going to be a week long stay. It was time to be more aggressive. They put her on the highest dose possible of Octreotide and were also using oxygen as part of the Chylothorax protocol. Still nothing, every time we hoped the drainage had even slowed down it ended up just being a clot in the chest tube. We were all feeling pretty discouraged.
At the beginning of May they decided to try NPO (not eating) status for a few weeks. This meant Olivia would not be able to eat or drink anything by mouth. She would receive all of her nutrition through her IV. She would not be dehydrated but she would still feel hungry. Let me tell you, this was some sort of nightmare. It finally got so bad the doctors gave Olivia a sedation drip to settle her down. This made my life and her's a lot more pleasant.
After nineteen days of not eating the chest tube was still draining. We had enough of the NPO thing and slowly started introducing the Portagen formula again. It really didn't affect the drainage too much. After over forty days in the hospital this Chylothorax was being pretty persistent. Her chest tube also kept getting clogged with clots. Finally, the surgeon pulled the chest tube. Since we weren't making much progress with what we were doing he thought we should see what her body can handle. You have to be very careful doing this, making sure to keep a close eye on the effusion. It can get bad fast. She had an X-ray at least once a day for next week. It continued to show fluid, but not much more of less than it had been.
On June 10th, after 54 days in the hospital we were released to go home. Our instructions were to keep a very close eye on Olivia, bringing her back for lab work and X-rays every two weeks. She was to eat only non-fat baby foods and her special formula. They also increased the dose of her two diuretics.
After several check-ups Olivia's X-ray did not look any better. They added another diuretic to see if that would help. It didn't. So, at the last visit they maxed out all three of the diuretics she was taking, hoping this would do the trick. We were getting so worried, and exhausted. We too hoped this would work.
On August 18th we had another X-ray and Cardiology check-up. For the first time the effusion looked slightly better. We were very glad to hear that. It was such a relief. I think Steve and I began to worry that this was not going to go away. We had pretty much exhausted every other option besides another surgery, which sometimes does nothing at all. Thank Goodness it wasn't going to come to that.
On September 15th we had an appointment with Cardiology. Things seemed to be continually improving. We were so happy. A lot of worries and doubts are lifted from my mind. However, I remind myself daily not to take things for granted. We celebrated Olivia's first birthday on September 20th and couldn't have been more grateful.
In October of 2008, Olivia had yet another Heart Catheter. We dread putting her under every single time, but we know it had to be done; this certainly wouldn't be our last time to have to do so. When they went in they found she had many more collaterals that would need to be coiled off. The collaterals are the body's way of compensating for her heart problems. The body thinks it is helping, but the collaterals actually make things worse. The doctors also found that Olivia's Left Pulmonary Artery was very narrow. This would need to be fixed. They ballooned the narrowing right then and were able to get it to a satisfactory size. The next morning we went home without many complications. After a couple of weeks we returned for another X-ray and Cardiology visit. It was that day we finally received the news we had been waiting to hear for eight long months…Olivia's dreaded Chylothorax had finally cleared up! We had prayed for this day for such a long time. Although our battle with a congenital heart defect will never be over, it was if we could sigh a bit of relief. At least an added complication, which continued to threaten her life, was eliminated from our daily lives. Now our focus was back on Olivia's heart and keeping her as healthy as possible.
Over the next several months Olivia slowly began to eat better and improve in her physical and occupational therapies. Before long, she was crawling and at eighteen months Olivia took her very first steps. Cognitively, she's right on track. Doctors had warned us that with the lower oxygen saturations it was a possibility she would develop much slower than other children her age. However, Olivia made her own path (as usual) and is testing well above her age in communication and social skills. She can almost spell her own name already!
It used to be very hard for me to talk about all of this and sometimes it still is…But, at this point, I am just so proud to be her Mama. I want everyone to know what she has been through, what all of these heart kids have been through, and all that they have overcome. If we had listened to the first doctor we spoke with we would never have known such joy in our lives. Yes, we've had a tough time, but it's only made us stronger, better people. We've also had the opportunity to connect with some phenomenal doctors and nurses as well as new heart friends we've made for life.
It is now our duty to make sure these children have the best life possible. I know this experience has changed me and my family. We will never be the same people we were just over a year ago, and that's a good thing. We now live life to the fullest and try to be better people. It's about what we can do to embrace life, not what can we do to get through it.