After 22 hours of labor I gave birth to my sweet baby boy. Our doctor held him up and noticed meconium in the amniotic fluid, commotion started to set in, but right away Will insisted that Lincoln go straight to my chest and we leave the umbilical cord attached. He handed Lincoln to me with a little hesitation. Holding him for the first time was exhilaration. I was in love. Adrenaline rushed through me. The three of us shared the the next two hours together blissfully unaware of what was coming next.
The nurses came in and asked if we wanted to bathe him. Will and I walked him down to the nursery and Will gave Lincoln his first bath. I was standing up recording it and started to feel dizzy so I sat down. I Hadn't slept for the last 24 hours and the tole of labor was starting to set in. A nurse from across the room was looking at Lincoln and said he looked a little blue. They checked his oxygyn levels which ended up being in the high 80's. At the time I didn't know where they were supposed to be, or what it even meant that they were low. All I remembered was that my sister had a baby a few months earlier and ended up in the NICU for a week because of low oxygen levels. They ended up sending him home saying nothing was wrong with him. I figured this was a similar situation. I was exhausted to I told Will to stay with Lincoln and I went back to the room to lay down. I fell asleep in seconds.
Two hours later I was woken up by a gently touch on my shoulder. I looked up to see Will. I smiled at him, but he didn't smile back. "What's wrong?"
He started to talk, but I couldn't focus. What was he saying?
"They took x-rays of Lincoln's chest. There is something wrong with his heart. It's too big and they aren't sure whats wrong."
His words echoed in my head. I thought to myself "Who is he talking about? They must have the wrong baby. I just saw my baby and he was perfectly healthy. We had an ultrasound that looked perfect. How could this be."
Will started talking again "They are going to transfer him to Primary Childrens."
Ok it's real now. I sat up and walked, as fast as my recovering body would let me, to the nursery. I saw my baby boy in the incubator with a tube stuck down his throat, and an IV in his arm. I could hardly stand to look. I was supposed to protect him, and I was helpless.
Shortly after I got there the life flight team came in. Will gave him a priesthood blessing and they started switching Lincoln to the baby stretcher. The doctor came in and asked us if we had any questions.
I had a million. Will asked the daunting question, "What is the best case senario?"
The doctor started to explain that there are many heart conditions, the best case and most likely would be Transposition of the great arteries. He would only need one surgery, where the other conditions need several follow ups.
My heart sunk. Surgery? On my baby. This couldn't be happening. I didn't want him to get poked with needles, and now they were talking about cutting open his chest? I stared at my baby as they quickly started to take him out the door. He needed a balloon catheterization to widen the whole in the upper chambers of his heart to allow for the mixing of the oxygenated blood and the oxygen-depleted blood.
"Wait!" I gave him a kiss and then they were off. They asked if Will wanted to go with them up to Primary Childrens. He took one look at my face and decided to stay with me. We slept, or tried to sleep for about 3 hours and left the hospital at 7:30 the next morning.
We walked into our house without a baby in our arms. It felt so wrong. We grabbed a few things, changed our clothes, and headed up to Primary Childrens. When we got there, there was some confusion to where Lincoln was. We went to the NICU first, but since he wasn't born at Primary Childrens he wasn't placed in the NICU but instead the PICU. (Pediatric Intensive Care Unit) Then when we found the PICU they told us that he wasn't out of the Cath-lab yet. It was a lot of walking and I was getting frustrated and wanted to see my baby. They let us go in the lab and look at him through the glass windows. He looked so lifeless. The surgeon then sat us in a room and explained the procedure to use. Everything went well. He also said they verified that Lincoln had Transposition of the great arteries.
About an 2 hours later he was finally back in the PICU and we were able to go in and sit by his bed. He was swollen, had a breathing tube, and all sorts of IV's and monitors. I wondered if I would ever be able to hold him.
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| Two days old |
But instead they told us that Lincoln's surgery would be a little more complex than they had originally anticipated. In addition to the Transposition of the Great Arteries, he had a VSD, ASD, and a coarctaion in his aorta. They recommended he be transferred to a larger facility with more experience with this particular condition.
My sister Soni was in the room with us. I am glad she was there because I didn't hear a word they said after "His surgery is a little more complex than we thought it would be." She asked them which one they would recommend. They said Lucile Packard in California. They said they could attempt the surgery, but they were not confident. They then told us to think about it and let them know. Will immediately said, "There isn't much to think about, if that is his best chance that is what we will do."
Thursday we went in and asked if there was anymore news on when he would be transferred. The social workers and doctors told us that he had to be accepted to Lucile Packard, and there was an issue with insurance. Our insurance that we had through BYU had capped out at $120,000. We thought "Great, we don't have to stress out about money any more, we just wont have any." We had accepted that we would be paying medical bills for the rest of our lives. But now it was holding us back.
Will spent all day working with the medicaid social worker seeing if we qualified for any financial assistance. We didn't qualify for medicaid because we made $500 over the limit. Later in the day we were told that if Lincoln was hospitalized for 30 days he would qualify for disability medicaid. As soon as we got that taken care of we were told we were accepted by Lucile Packard later that day.
Friday morning they told us they would life flight Lincoln Saturday morning. They told us that they only had room for one adult on the plan. I had come down with a horrible cold, so we decided to send Will out with Lincoln, and bought a plan ticket for Sunday for me. We all drove up together Saturday morning. They loaded Lincoln into the ambulance, Will kissed me goodbye and they were off. I spent Saturday trying to rest. Sunday Soni and I went to the airport together. She got a flight home for the same day. The whole ride on the plane I stared at a picture of Lincoln. It was so hard to be away from my new baby and my husband.
Sunday, and Monday night we stayed at a friends house who lived about 45 min from the hospital. Then we decided to just stay at the hospital until we could get a place at the Ronald McDonald house so we could be closer to him.
Tuesday night we went in to visit Lincoln and we questioned if the nurse was paying attention to the IV in his forehead. There was a red mark around it that we thought appeared to be getting worse. He said he was informed about it and they were keeping an eye on it. Another nurse passing by said that the IV had not been compromised and if it had his forehead would have fluid in it. She poked at his forehead and realized that it had indeed leaked out. They pulled out the IV and started the 12 hour process of trying to get in another line. A little later a doctor came in and told our nurse to stop Lincolns feedings in preparation for his surgery. Will told the doctor that he might be confusing us with another baby because Lincoln wasn't scheduled for surgery until Thursday. Indeed he was and would have stopped Lincoln's feedings because he got confused. We spent the next few hours by Lincoln's side because we were afraid of what might happen if we were to leave.
Wednesday morning things were looking pretty good. Lincoln was off the ventilator, off oxygen and he only had 3 fluids going into him. Then the surgeon informed me that Lincoln's white blood cell count went up which may be the first sign of an infection. The surgery would have to be put off until he is better. We still had the problem of not having an IV. Through out the day they made several attempts to get another one in and finally got it after about 8 tries. Will stood by his side and did what I was not capable of doing. He held his pacifier in his mouth as they poked him over and over again. Lincoln just stared wide eyed at Will. It broke his heart.
Around 11:00pm the IV started to leak so they decided that it was time for a more invasive central line, which would require giving him a sedative. At 2am they called us and told us that he had not responded well to the sedative and after needing to be resucitated he was back on the ventilator. They gave him a general antibiotic, but never found any other signs of infection. Soon after his lactic acid levels had dropped from 50 down to 15, and by Friday they were down to five. We had a room at the McDonald house and things were looking up.
The next four days were uneventful, at least as far as medical incidents go. Monday night Will and Steve Young(NFL quarterback) gave Lincoln a priesthood blessing. Tuesday we found out someone stole our credit card from the hospital and racked up $2,000 on it. (Don't worry, we didn't have to pay it) But it made for a stressful day.
Wednesday while the doctors made their rounds they told us they were planning to do Lincoln's surgery first thing in the morning. This was contingent on his cultures coming back negative and his numbers all staying where they were.
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| Day of surgery |
The 9 hours went surprisingly fast. We went to breakfast and then went and took a nap in the parents lounge. Around 3:30 our case manager Lupe told us that Lincoln would be up in 45 min. My first thought was "Are you allowed to tell us that." We walked around a bit trying to figure out where we should wait. We both had this scenario in our heads of the surgeon coming through two swinging doors and giving us the news. However since Lupe had already told us that it went well we didn't have to sit there anxiously waiting for that situation to play out. We were grateful for that.
We came upstairs and waited for about 10 min. before they called us in to talk to the surgeon. He told us that everything went well. He ushered us into his room through the mob of doctors and nurses and told us to give him a kiss. There was my baby laid out on a bed with his chest gaping open. I watched it rise and fall and saw his tiny little heart beating strong. I thought I would be horrified by the sight but I was simply amazed that they were able to perform such a complicated surgery and so grateful that we live in a day and age where this was possible.
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| 3 Days after surgery |
A week later we graduated from the CVICU and moved up to the third floor where parents stay with their baby around the clock, and are the primary care givers.
We gave him his meds, changed his diapers, and feed him. The whole time I was pregnant my biggest fear was not being able to stay up with Lincoln, or that I wouldn't hear him and wake up when he cried. I thought that I would be grumpy but every time I looked at his precious little face I lit up and all I could do was smile. I was just happy to be doing what normal mommys and babies do.
Friday they told us if Lincoln didn't lose any weight, we could go home the next morning.
I contemplated weighing down his diaper. Instead I just fed him right before he was weighed and he had stayed the same.
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| Waiting to leave Lucile Packard |
After we got settled on the plane I breathed a sigh of relief. We were finally going home.
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| Finally home |
(http://pinterest.com/ruth_h/the-faces-of-chd-congenital-heart-awareness-week-f/)
