Sunday, August 28, 2016

Aubin's Story

I was that kid that had her whole life planned out at the age of 10. I knew what career I wanted, at what age I would get married and how many kids I would have. Everything was practical and planned out. However, God had different plans for me.

The heart of man plans his way, but the Lord establishes his steps.

Proverbs 16:9 

My husband Justin and I got married in 2005. In 2007 we decided to try to have our first baby. One day after I had gone for a long walk, I experienced some intense cramping. I passed what I thought was a blood clot but turned out to be an embryo. Scared, I ran to the doctor and found that I was in fact pregnant and what I passed was the baby's twin. I was 4 weeks pregnant. We were over the roof happy that I was pregnant and didn't talk about what had happened.

A few weeks went by with no problems. Then the cramping started in again, just like before. Knowing what could be happening I went to the doctor and the ER. They said that it was possible I could be losing the baby but there was nothing they could do to stop it. ER did a traditional ultrasound and a trans-vaginal ultrasound. The baby was still there and looked fine. I was only about 7 weeks along. I went home, kept my feet propped up, and continued to be in massive pain. I prayed for this baby to hang in there. I couldn't bear the thought of losing him/her. Meanwhile, as I sat there doing all I could to take care of myself, and therefore the baby, family members were still out buying baby things. I remember my mother-in- law bringing over a stroller and imagining pushing my baby around in it.

At 8-9 weeks along, I lost the baby. I was devastated. I wanted nothing more than to be a mom and losing my babies made me feel like a failure. Like I did something wrong. I was also relieved that the physical pain was over. After two months of hurting and grieving I just couldn't take it anymore. I was ready to try again. I just needed to fill the void in my heart. About 4 months later we found out I was pregnant again. I was more scared than anything. Afraid I would lose this baby, I spent the whole first trimester resting as much as I could, keeping my feet propped up, and eating all the right foods. Everything I did, ate or drank, I made sure the doctor approved.

On February 9th of 2008, I delivered my daughter Lanie through C-section. She was healthy and happy weighing in at 7 pounds 7 ounces. She was my rainbow baby (i.e., a baby born after miscarriage or death of a child). Through the years I have still thought about my angel babies and who they would have been.

In November of 2010, I found out I was pregnant again. It was a huge shock since we had planned to wait another year. Again I was nervous but happy. I ate all the right foods, took all the right vitamins and followed instructions to the "T." When we found out this baby was a boy, we were overjoyed! A boy! We finally were having a boy. We named him Liam Michael and couldn't wait for him to arrive.

In my second trimester, I felt something was wrong. My belly wasn't growing as much as it did when I was pregnant with Lanie. The doctors said not all babies grow the same and that I shouldn't be worried, so I tried to put it in the back of my head. My third trimester got worse. My belly seemed to stop growing all together and I was in intense pain. I started having nightmares that he would be born not breathing. I put this off as anxiety of getting ready to have a new baby, but I could never shake the feeling that something was wrong.

The further along I got, the more pain I was in. I knew something was wrong but when I'd explain this to the doctor, I was blown off. I went through three doctors because no one would listen. Finally the pain became constant. I was having contractions but it was too soon. I went to the hospital and they'd give me meds to stop the contractions and send me home. At one point I was going in every few days. They stopped giving me the meds to stop contractions because they stopped working, and instead gave me pain meds. I went through seven visits in two months. During my seventh visit, my doctor sat in the bed, patted my knee and told me to suck it up. No ultrasounds were ever done to make sure Liam was okay. Protocol wasn't followed and the doctor considered me a young mom who was over-reacting.

I refused to go back after that. I stayed home, in pain. On July 14th 2011, the pain was so intense that I couldn't hardly move and I just sat there crying. My sister-in-law said that was enough and dragged me to the hospital. She explained to the nurse the extent of my pain and contractions. The nurse happened to be present for most my visits and she agreed with my sister-in-law. She stripped my cervix and made sure they weren't sending me home this time. Another doctor walked in the room and said that we couldn't let this go on any more and it was time to meet Liam. I cried. Finally, the pain would be over and my baby would be safe in my arms. They took me into surgery and when they opened me up, I heard gasps and "What the heck?".

Knowing surgeons don't slip like that, I asked what was wrong. Turns out the cause of my pain and contractions had been because my uterus had torn open. It was also why Liam had stopped growing. That was just the beginning. At 10:59pm Liam made his entrance into the world and what should have been a joyous occasion turned devastating. Liam was born not breathing. I looked at Justin and reassured him that all was fine. Some babies don't breathe right away. Inside I was dying. My nightmare had come true. Then I heard the sweetest, tiniest cry and I cried. "He must be okay," I thought. I later found out that hearing him cry was the worst thing that could have happened.

I didn't get to see my son before they rushed him to get an x-ray. They had to incubate him because he couldn't breathe on his own. My husband wasn't allowed to go with them; they just rushed our baby away. I knew that wasn't normal but I refused to completely lose control. I had signed papers to have my tubes tied, and the doctor asked me if I still wanted it done. I said yes, knowing all the problems I went through being pregnant and knowing my uterus tore open just solidified that it needed to be done.

After surgery I learned that Liam wasn't doing well. He had a hole in his diaphragm, his heart was pushed over, and his lungs were squished. The doctor had my husband and I seperated and I was being asked a lot of questions about what I ate, if I took drugs, where I had been the last two weeks. Finally I lost it and cried. My husband rushed to my side and told the doctor to stop asking questions. If he wanted to know where I was then he should check the hospital records because I had been here. That's when they stopped grilling me and started answering our questions about Liam. We were told it didn't look good. They weren't sure if he would make it and he needed to go to a different hospital.

At 7 hours old, I was finally taken to see my baby boy. I wasn't expecting what I saw: my baby hooked to cords and tubes. Because I had just had surgery, I wasn't allowed out of the bed. I was only able to touch his little head covered in black hair. I could barely see the side of his face. I just wanted to pick him up, kiss him, and tell him to keep fighting. I was only allowed to spend about 15 minutes with him before they took me back to my room. They'd taken a picture of him for me and I clung to it.

The next two days were like my own personal hell. I had to tell my daughter that her brother was sick and couldn't come home and that she couldn't even see him. I had to call family and friends and ask them to pray for him. I mostly sat there and either cried or stared into space as I prayed for my son. I only ate because they wouldn't release me unless they saw me eat. Liam was flown to UCSF to get cared for by their specialist. I told the doctor I needed to be released and he agreed to release me one day early but no sooner. On the day I was to be released, I crawled out of bed, dressed, packed, and waited. I couldn't leave there fast enough.

When I got to UCSF I was told Liam had a birth defect called Congenital Diaphragmatic Hernia. They didn't think he would make it. The surprises just kept coming. Liam had to be on ECMO for 5 days. He had surgery for his CDH at 7 days old. Liam spent 48 days in NICU and then was released. (You can read the whole story on my blog Mommy Confessional).

Because of CDH Liam had chronic lung disease, asthma, a feeding tube, compromised immune system and many more medical problems. He got physical therapy, speech therapy, feeding therapy, and wore braces for his ankles. We spent over 4 years struggling to get him to gain weight. His pediatrician felt he was out of the woods though. We could finally stop worrying that CDH would show its ugly head again and take our baby. Liam got sick easy and stayed sick longer than anyone. A cold caused him to need oxygen and normally a hospital stay. As he got older, he got sick less. We were thankful for that. He started his first year of preschool in 2014 but only went two days a week and even then missed at least 50% of class. We hadn't wanted him to start school at age 3 but they said it was the only way to continue to get his therapies. In August 2015 he started his second year of preschool, this time 5 days a week. He did really well and was really happy. Still we struggled with his breathing, germs, and gaining weight. He was 4 and only weighed 25 pounds on good days. He was much smaller than the other kids and medically fragile. There was always worry.

In September 2015, he went to school for the first time with oxygen. I was nervous the other kids would make fun of him. They were curious though, so I sat there and explained to them what is was for and answered all their questions. Finally one little boy raised his hand and said Liam was like an astronaut. After that, all the kids thought he was so cool. In November 2015, Liam got sick. He missed school, ran a fever and couldn't hold anything down. After a few days he seemed fine and was able to return to school. I could tell those two days sick caused him to lose weight so we were back to bolus feeds through his feeding tube during school and increased through the day. Still all seemed normal, or at least normal for us.

A week later in December he got sick again. He was fine one day and not the next, running a fever, on oxygen, and not tolerating feeds. I gave it a couple days, and then I took him to urgent care. I could tell his lungs were working harder. I was afraid he'd develop pneumonia and these were his early warning signs. The doctor refused an x-ray saying that Liam looked too good and his lungs sounded too clear except for a crumpling noise in his left lung which was normal for him. He sent us home, saying if he got worse to bring him back. He got worse. The next day I took Liam back. He wasn't bad enough to be rushed to ER or even Children's Hospital. I sat there in Urgent Care holding him. I looked down and he was asleep. I looked down two minutes later and his lips looked blue. I grabbed his hands and his fingers were blue and so were his ears. I increased his oxygen and jumped up to get help.

They took Liam back and called the ambulance right away. While we waited, we gave him a breathing treatment. He seemed more aware but didn't care to move. When the ambulance got there I told him to be good and I'd see him in a few minutes. I rushed over to the hospital. The hospital asked a quick background on how he got sick and I relayed the events exactly how they happened. They tried to get an IV but couldn't. They felt he was too fragile to move so they brought the x-ray machine to him as well as an ECO. Once again they tried an IV but to no avail.

Liam looked at me and said, "I tired Mommy. I sleepy." I held his hand, kissed his head and told him "I know baby, it's okay. Go to sleep, it's almost over. I'm right here." Minutes later, the nurse looked at the monitor, then at me and asked if Liam was seizing. I looked down said "no," and then suddenly he was. All I could do is move out of the way into the corner so they could work on him. On December 15th 2015, Liam passed away. It's believed that he caught some virus similar to a cold that his body couldn't fight off. The virus turned into a blood infection and the blood infection caused a pulmonary embolism. Because Liam's veins had been poked so many times through his 4 years, 5 months and 1 day, his veins became calcified making it impossible for them to get an IV in him. Since they couldn't get an IV in, they weren't able to administer meds to break up the clot. They tried a bone IV but there wasn't time to get the adult meds into him before his little body had had enough.

After they cleaned him up, we were able to hold him one last time, tell him we loved him and say our goodbyes, or see you later's.

Liam Michael Bryant 07/14/2011 to 12/15/15 

Here are songs that helped me through the questions and the pain:

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