Brielle’s Life

Brielle’s First Lake Trip

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Family

This weekend I’ll be in Arkansas having a Wolford Christmas. My grandparents retired to Arkansas a while ago, but my family has been going to Henderson for decades. As a family we all visit for the summer holidays.

The last time I was in Arkansas was for Memorial Day. It was a couple of weeks before Brielle would be diagnosed with anencephaly. The weekend was cold and rainy and most of us stayed indoors. We took one boat ride (highly unusual for us all) the whole trip. Of course it was the first time out for the season and the boat ran out of gas (come to find out someone had stolen our gas). But it was a fun outing. Tessa would be getting married in about a month, so we spent a lot of time going over wedding and travel plans.

Even though it was a lazy weekend and wasn’t the weekend we usually have (we usually spend the whole weekend on the lake and eating, Papa called us locusts), I still wanted to get in the lake. I’ve been in that lake every year of my life, I wasn’t going to miss a year just because I was a) pregnant and b) it was cold and rainy. So Mikayla and Teagan (cousins) and Tessa and Zach (sister and brother in law) all went down to the end of the road and got in the lake. Mikayla just stuck her feet in. And Teagan didn’t last too long (she doesn’t have a lot of insulation). It was really cold. But Brielle and I still went for a swim. I think she had fun. I was starting to feel her move at this point in my pregnancy and she did a few wiggles for me. As we all know, she was a natural swimmer.

I’m glad Mikayla took this picture of all of us. It’s the only picture I’ll ever have of Brielle on the lake. I didn’t know at the time that this would be her only visit to Arkansas. And I don’t think I would have done anything differently, I mean, we even took the boat to the cliffs (we jump off the cliffs into the lake). So she did the major things we do as a family. I think we’ve all jumped, right? Mikayla’s father, my Uncle David, used to swan dive off of the cliffs when he was a boy.

It’s going to be weird being back at the lake and not having Brielle with me. I’m bringing her teddy bear urn, but obviously, it’s not the same. I am excited to see my family though. It’s been a hard couple of years for us all, but it will be good to get together. I’ve missed them.

Part Two: God’s Healing Hand

~ lovingbrielle ~ 1 Comment

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Part two: Gastroparesis involves paralysis of the vagus nerve. This nerve is critical to the function of the entire body and originates in the brain stem. Damage to it causes problems all over the body. One of the things the vagus nerve does is control contractions of the stomach. Your stomach contracts to pulverize food and push it through to the intestines. Mine was broken, no contractions, no pushing out food. Because of this, I fully anticipated that I would not have typical morning sickness.

Sure enough, I never had morning sickness. I suffered severe nausea for a few weeks, but I never threw up. People would tell me I was lucky, but I was thinking, I wouldn’t call this luck. Things started to feel different as my pregnancy progressed. I could eat more foods and not suffer. My appetite was back, I was actually experiencing hunger, a sensation I had long forgotten.

I found myself loving pregnancy, because for the first time in nearly a decade I felt like a normal person. Each month I felt more and more like a normal person. I had forgotten what “normal” felt like and it was revolutionary to feel what everyone else felt. I loved it. I loved every moment of it. Pregnancy suited me.

Of course you all know the struggles I faced during my pregnancy. And physically it was difficult, but nothing compared to what I had dealt with for the past nine years. But even though I felt better, I would still get sick and could still induce a gastroparesis episode by consuming certain foods.

Throughout my pregnancy we all prayed for healing. We prayed that Brielle would live, survive, a complete and full healing. And we were all heartbroken when she didn’t survive. And while I want to talk about that more in another post, what I do want to share is a strange healing that did happen.

In rare cases pregnancy can cure gastroparesis, for reasons unknown. Of course I hoped for this, but I didn’t expect it to happen. After Brielle was born I fully anticipated that the pain killers they had me on would cause problems and that I would be sick. The smallest dose of Motrin (ibuprofen) would make me violently ill, it had been that way for years. I was taking 800 mg of motrin three times a day and percocet four times a day and had no adverse effects. I thought this was odd, but attributed this to my breastfeeding (pumping) or the hormonal effects of pregnancy.

Yet, more and more time passed and I didn’t have any GI problems. I began to eat foods that caused flare ups. Nothing. No problems. I was hungry two hours later. A normal stomach empties in ninety minutes. My stomach was behaving like it should. Odd. What about my intestines? Strangely, pain free. I did experience bloating around Christmas (one of the more annoying side effects of GI problems), but I noticed I was bloating when I ate highly processed and sugary foods. That’s really not that abnormal. Cut out the junk food and my mild bloating was gone.

While I want to wait until the six month mark to declare myself cured, I find myself marveling at this healing I’ve experienced. Here we had all been praying for Brielle and instead it was me who was healed. Me who has spent the last decade struggling to survive, is normal. Perfectly and wonderfully normal.

At first I felt guilty and it pained me. I didn’t want to be better, I wanted Brielle to live. The healing should have gone to her. She should be the one who gets better, not me. But as time passes I find myself more and more thankful. And completely moved. She fixed me. Her beautiful little life fixed me. All of her love fixed a decade of horrible damage. Nerves that were broken in both of us were cured. And the only slight problems I have are with my intestines (a whole other set of nerves).

And who do I give the credit to? Science? God? Brielle? Could they not all be one and the same? Could not all of our prayers healed me? And could not God have used Brielle and science to accomplish that goal? He is the creator, he did create science. Can I not understand the how, but also give credit to the one who created the how?

I’m still piecing all of this together in my mind. But I’m so thankful. I have a second chance. I was given the opportunity to live, because of Brielle’s life. Brielle’s sweet love healed me. I have a chance now. I might get to grow old now. And maybe I’m not 100% and maybe in a few months I’ll start having problems again. I don’t know. But I do know that right now, I don’t have any problems and that is a miracle.

Brielle’s First Concert

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I love Billy Joel. In 2009 he was on his Face to Face tour with Elton John and I flew out to Atlanta to see the concert. David got us great floor seats and we had an awesome time. It was an amazing concert. Fast forward to February of 2015 and I found out he’ll be in town again. By the time I decided I wanted to go, there were only a few seats left in the back row. Serious nosebleed seats. I was still excited.

That evening I was a complete mess. I was an oil monster, angry as could be, and just all out miserable. I felt awful and no matter how hard I tried I could not get excited about the concert. I kept thinking, “What’s wrong with me?!” David was on pins and needles around me and I was dying for the concert to be over already.

Half way through the concert I started thinking, “Could I be? No, we just started trying. Maybe? No way, it’s too early to start feeling symptoms yet.” And then, “Maybe I should just take a pregnancy test to be sure.”

I voiced my thoughts to David on the way home. He was kind of bewildered, “But we just started trying.” I let out a sigh, “I know.” I was such a cranky pants. The more I thought about it though, the more I started to get that excited butterfly feeling in my stomach.

The next day David and I went to Kroger’s and picked up a pregnancy test. I was so nervous. The test said it was most likely too early to tell, but I took it anyways. A few minutes later (it felt like hours), I checked the test. And sure enough, two very faint lines appeared. I was pregnant.

I was confused, “Why was it so faint? Is it like a kind of pregnant? That’s ridiculous Caitrin, you can’t be kind of pregnant. Maybe it’s so faint because it’s so early.” I came out of the bathroom and told David I was pregnant. “Already?” We were both shocked. Complete and utter shock.

We were excited, but shocked. We thought it would take longer. It hadn’t even been close to a month since we started trying. We decided to wait a week and take another test. By the following week I was excited, we were both extremely excited. The news had finally sunk in and I was very happy to finally be a mommy. And David had wrapped his head around being a dad and was also happy. He’d already been talking to my tummy and we had mentally adjusted to the news. We were ready.

I took the second test first thing in the morning. I was exhausted, so I went back to bed while it did it’s magic. David told me he would check it when he got up for the morning. I woke up to him saying my name, “Caitrin, there is only one line.” My eyes shot open. I’d lost the baby. It’d only been a week and I’d lost the baby. I sobbed and sobbed. I wrapped my arms around my tummy and kept apologizing to my dead baby. I was completely and utterly heartbroken.

A couple of hours later I got up for the day. I went into the bathroom and looked at the pregnancy test. There were two lines, they were just super faint. I came out of the bathroom, pregnancy test in hand, and said, “David, I’m still pregnant. You read the test wrong. You read the freaking test wrong David.” I’m shaking my head, rolling my eyes, and he’s looking at me with his confused, “What?” eyes. I’d gone through all of that heartbreak for no reason. I wasn’t even mad, just, “Really David, really? Thanks a lot.”

Lesson for all you ladies who want to have kids, don’t let your husband interpret the test. And if you start hating something you’ve always loved, take a pregnancy test.

And the good news? Brielle’s first concert was to see Billy Joel.

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Our Last Day in the Hospital

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“Jamie came Sunday morning (discharge morning) on her own time to check on us. She told us what to expect and filled us in on how Brielle would be taken before I could leave and where Brielle would go. I appreciated this information and her visit more than she’ll know. I don’t know how I could have gone through the day without knowing what to expect. She loved on us and thanked us for letting her be a part of our journey, she told us she was honored. She is a wonderful person and I am incredibly thankful for her. She is very special. David and I don’t understand why everyone is so kind to us, but we appreciate it and are immensely grateful for it.

During all of the back and forth of discharge, I read to Brielle. I read her all of her favorites one last time. And I saved ‘It Will Be Okay’ last. I talked to her as I read to her and did the silly voices that she liked. I’d play with her and her toys. I’d have her toys give her kisses and talk to her about Mr. Ducky and Elephant Bear. It made me happy to interact with her like I should, like she was there and not dead. I kept my bed up high near the bassinet so that I could love on her just right and hold her. I hated that I couldn’t see her eyes. David spent a lot of time next to my bed near her bassinet as I read to her.

We had another delay because the nurse didn’t realize I’d want to change her blankets. I wanted to have everything that Brielle touched. I asked for the bands on her arm and foot, but was only allowed one. The nurse said it didn’t matter which one and she didn’t want me using scissors on them, she wanted me to peel them off. It took everything I had not to be cruel in response. Of course it matters. Everything about her matters. I took the one off of her wrist and asked David to ask the funeral home to save the one on her foot. I begged that it would be saved (the funeral home saved it for me). David and I sobbed through the process of changing her blankets and clothes. We took everything except her diaper. I folded each blanket and handed them to Mom. Dad took pictures. I hurt to my core. David and I spent time alone with Brielle and we loved on her and told her how special she was. David took Brielle at this point and wouldn’t hand her back to me. This was for the best, I couldn’t let her go. I couldn’t physically let her go. So David held her while I fell apart and fussed over her.

When the charge nurse came, she gave us a chance to say goodbye one last time. She then put a blanket over Brielle so that no one could see her and took her back to the nurses station and to the fridge.

I watched her walk down the hall with my baby and lost it. This was the worst moment of my life. No mother should have her baby taken from her. David held me up and we sobbed into each other. It felt like my heart was being torn from my chest and rolled away forever. I couldn’t go after her, I couldn’t bring her home. I wanted to die in that moment. Take me instead, just let Brielle stay. When your child is taken from you, all you know is pain and I could no longer reason. The nurse came back and I got into a wheelchair. She wheeled me down to the first floor and I cried the entire time. She apologized for our loss, but it didn’t make anything feel better. An apology wont bring Brielle back. David brought the car around and as I waited with the nurse she apologized again and told me this unfortunately happens all too often. All I could think was, ‘It shouldn’t happen at all.’

Once inside the car I sobbed and held onto Brielle’s animals. When we were home I went upstairs, got in bed and slept for the rest of the day. I tried holding onto Elephant Bear, but it was too large. Angel Dragon Bear was too stiff and you can’t snuggle a rubber ducky. I curled up with Pink, the pink fluffy bear. (I ended up sleeping with Pink every night until we brought Brielle home in her teddy bear urn. I now sleep with Brielle every night.) David stayed strong for me all day, I don’t know how he did it, but I’m glad he did, because I couldn’t. I’m glad he was there. There was no way I could have lived this day without him. I couldn’t let her go.”

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The Most Heartbreaking Thing About Our Time With Brielle

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This is another hard post for me to share. It has to do with the harsh realities of being with a dead body. Again, a little graphic. I know it’s strange that I’m sharing these details. But there may be people who are (will) going through a similar situation as I am and I want them to be aware of what happens, how it feels. I wish I had thought to ask someone what to do in these situations. No one tells you how to preserve a body, but still spend time with it. A really awful and weird thing to talk about. Fair warning.

“After our family left, David and I spent time with Brielle. We snuggled her and I took a nap with her as well. We could tell that her eyes were starting to deteriorate and it broke our hearts.

Matt (our nephew – David’s brother’s son) had told us he would come down after work on Friday (from Chattanooga). He arrived around 9:30 PM. It was really nice to see him. David and I both commented on how serious he was and that it was the first time he had looked his age and even looked old. That made me a little sad. He’s easy going like David and generally looks young and carefree, I didn’t want him to carry our burden too. He held Brielle and was very somber. He seemed happy in a sad way. Happy to meet her, but sad that it was this way. This was his first female cousin and really the only one he would have spent much time with. He was very gentle with her. It was sweet.

By the time Matt left, Brielle’s eyes were so fragile they were about the consistency of jelly. Just touching them and they felt like they would collapse at the slightest touch. It broke our hearts. I texted Lauren and asked her what to do. She told us to wrap her in ice, in this very elaborate way, and then to put Vaseline on surgical gauze and cover her eyes with the gauze and then put a hat on top of her eyes. It tore David and I up, thinking of covering her eyes forever. We took last pictures with her with her eyes exposed. I cried the whole time. All I can see is my beautiful daughter, it breaks my heart just thinking of having to hide her face to protect it from decay. Awful, awful moment. One of the worst times in our lives.

We took lots of pictures and then put her in her bassinet. We took a long video of her cute little body. I documented every little part of her and described what it was all like. We looked at every part of her and I cried over each. She truly is beautifully and wonderfully made. She’s perfect. Perfect hands, perfect feet. Beautiful legs and arms. She had such a strong body. I’ve never seen a baby with such a strong body. After we videoed, we wrapped Brielle in her ice pack swaddle. The saddest thing we ever did.

The ice swaddle was difficult to figure out at first and then made perfect sense. We had the nurse bring us gallon bags of ice and we used chux pads that were in the room with me. And then three receiving blankets. As I was doing this my hospital band caught Brielle’s leg and cut her. I nearly fell on the floor crying. I know and knew at the time that it didn’t hurt her, how could it? But it hurt me. It felt like a knife to my heart. I had inadvertently hurt my baby. I had damaged my sweet perfect Brielle. I put a band aid on it, to make it better, I’m her Mommy that’s what I do. Then I realized if it’s pulled off it might peel her skin off. At that point I curled up on the bed and bawled. Horrible, stabbing, heart wrenching pain. David wrapped his arms around me and told me it was okay. He did his best to console me.

We then covered her eyes with gauze and Vaseline. That was even worse. We lost half her face in the process and it tore me apart. I know David felt the same. We couldn’t bare hiding her. Covering her face. It felt like we were betraying who she was. I know it was for the best, but that doesn’t change how it feels. And it was awful to lose that. It felt as if we had lost another piece of her. Like she was slowly disappearing in front of our eyes. It still rips us apart. Had I known at the time that I’d get to see her eyes again it might not have been as hard, but I didn’t know that. David and I thought this was the last time we’d see Brielle’s face. And it felt like goodbye. This night felt more like a funeral for us than her actual funeral did.

After she was covered and her body prepared for preservation, I gathered all of her toys and opened the Rachel’s Gift box. Inside was a beautiful blanket, very soft, a gorgeous knit bonnet, and another toy for her. I called that toy her Angel Dragon Bear. I’ve never understood why bears need wings. Which is why that bear’s name is Angel Dragon Bear. I get my awesome naming skills from my Indian family.

We wrapped her up, tucked her in tight, and propped her on her side so that I could see her as I slept. I put her elephant in the bed with her with it’s arms on her side, guarding her. Her purple rubber ducky on the top left corner (the left corner near her head) and I snuggled the two teddy’s the Angel Dragon Bear and the pink fuzzy bear that Linda gave us, at her feet. I made sure everything was perfect for her. And then I sobbed. And sobbed. David and I tried to comfort each other, but it was just awful. It felt like we had ripped our own hearts out for the betterment of Brielle. I think this moment may have been worse or just as bad as when she died.

David and I went to bed that night completely heartbroken. I didn’t sleep with Brielle that night either, but kept my body and hand as close to her as possible. This broke me. This night was impossible and I’m not sure how we got through it.”