In music, a grace note is a note that is held for a brief moment...barely touched on the piano. "Grace Notes" seems like a fitting name for this blog. Our lives changed when I carried our daughter, Grace, for 9 months only to hold her (in my earthly opinion) for a brief moment. She lives in heaven with her Savior. If only that comfort, that sure hope we have, would take away the pain of missing her.

"As you do not know the path of the wind, or how the body is formed in a mother's womb, so you cannot understand the work of God, the Maker of all things." Ecclesiastes 11:5

We are always thankful for Grace.

Saturday, March 24, 2012

Grace's Birthday ~ May 20, 2010

This might be way too much detail and information, but this is what I get to hold on to and remember...

May 20, 2010
On the morning of May 20, we took Heather to our neighbor's home by 6:30 a.m. Maddy (our then 5th grader) stayed home from school because we think that she had broken her toe two days before. She was still having a hard time walking on it. I told her that I'd take her to the doctor later that day after I got home from my appointment. Bob and I drove to Nashville separately, because he was going into work after the appointment. We arrived at the OB clinic in Nashville. As soon as we got out of our vehicles, I could tell that Bob was upset. We sat in traffic for awhile on the way down. Bob and driving in rush hour traffic just don't mix, so he was a bit testy.

I signed in and talked to a registration clerk. He said that my OB appointment was at 8 a.m. and my ultrasound was after 2 p.m. I let him know that when I called to confirm my appointment, I made it clear that my times were at 8 and 8:45. They finally agreed. Again...Bob was very testy. Then the clerk said that we owed $325 for our co-insurance. We don't appreciate surprises. I asked when it had to be paid. He said not to worry, it wasn't due until my 28th week. I was already 36 ½ weeks.

We were eventually called back for the ultrasound. The technician talked to us throughout the ultrasound. Toward the end, I noticed how he was focusing on each hand. I saw how a finger was sticking up and it seemed bent. I didn't say anything. I think he finally said that that was interesting or a concern. Shortly after, he had Dr. B. come in. He is an OB doctor, but he wasn't the doctor I was seeing later on for my OB appointment. He was just reading and explaining my ultrasound.

Dr. B. was concerned from the start and proceeded to explain how the baby's heartbeat was only about 105 bpm. He said that I was carrying 5-15 times the amount of fluid I should have been. (That explained my excessive weight gain and constantly hard belly. Even more shocking for me to hear was that the baby was only measuring about 4 lbs. He said that the placenta wasn't carrying enough oxygen to the baby either.

I appreciated his directness. He said, “I know that I am just meeting you for the first time, but I'm sending you over to Vanderbilt and you'll be delivering this baby today.” I wasn't sure what to think. I was relieved to go 3 ½ weeks early, because I had been so uncomfortable since March. I was also quite anxious because we absolutely weren't prepared for this when we left the house. No bag was packed. No camera. No phone numbers.

Dr. B. called the OB department at Vanderbilt and talked to Dr. B. She would be delivering our baby. He explained everything to her that he had just told us and sent us on our way. He made sure to point out to Bob that I was not to drive and that he take me directly to the hospital. He said that Dr. B. would determine whether or not I'd need a C-section. I was dreading this, but I would do anything it took for our baby to be alright. Dr. B. said that if I needed to have a C-section, I should highly consider having “things taken care of.” I didn't respond. Did he suggest this because at my age this must have been an accidental pregnancy? Why would he make such a comment?

On the way to the hospital, I called our neighbor and told her that “we are having a baby today, and I'm not kidding.” I said that Bob would be by later to get Heather and asked if she'd check on Maddy later that day. Bob called the fire department to say that he needed to be put on FMLA now. I really can't remember any of our conversation in the car, if there even was any. I do remember Bob saying, “There will be no more babies. I'm not going through this again.” I said that if I needed to have a C-section, I'd consider getting my tubes tied. From the time we started seeing doctors and announcing our wonderful news of another pregnancy, we were so frustrated with the negative comments.

“So was this a surprise?”
“You're how old?”
“Better you than me.”
“So this was an accident.” (Not a question, but a statement.)
“Maybe this time you'll get a boy.”
“Oh! So you're trying for a boy.” (We weren't trying for a boy. We just wanted another baby.)

We wanted to have another baby. I'm sure that Bob would have loved a son, and I would have loved to give him one. I didn't care what we had. I just wanted to have another baby. I wanted Heather to hold her baby brother or sister and have the experience of being a big sister.

around 10 a.m.

When we arrived at Labor and Delivery, I said, “I guess we're having a baby today.” They were expecting us and took us back to a delivery room. I changed and nurses and a doctor started my IV and put a heart monitor on me. They had a difficult time finding the baby's heartbeat. Finally, they realized that it was so close to mine that it was hard to tell which was the baby's. It was only reading in the 80's. Because the heart rate was so low, I would be having a C-section. They were concerned about doing it right away, because I had eaten one small bite of a banana on the way to the hospital. They said that I could aspirate on it, so they were going to have me wait. The heartbeat must have slowed even more, because I was suddenly being wheeled to the O.R. Bob stayed back to get scrubs on and would be with me when I was prepped.

At this time, I was beginning to feel anxious. C-section? I really didn't want one. What if I felt it? Once in the O.R., they had me sit on the bed. The anesthesiologist gave me a spinal. It didn't hurt much at all. The most uncomfortable part was bending over while sitting on the bed. My belly was so big and hard, that I couldn't bend very far. After a couple of minutes, I was numb. The doctor apologized and said they couldn't wait for Bob to get in the room. As they cut me, Bob came in. He sat beside me and just as he sat down, I could hear all of the fluid rushing out. It was like a tidal wave on the drape that hung in front of me. Bob said that it was everywhere and came back as far as his feet. The baby was out at 11:22 a.m. The doctor warned us and said that a team from the NICU was going to be bursting through the door any second. At this time, I was just looking at the ceiling—not thinking about anything. Sometimes I'd close my eyes for awhile, but I'd open them again so the nurses knew I was conscious. Bob didn't want to sit anymore and stood up. He must have realized that the baby wasn't breathing. I couldn't see anything. I didn't realize when the baby was out. The doctors and nurses were very quiet. The only words that I heard were, “Wow!” and “Watch out! Be careful!” They were referring to all of the fluid that was in me. They didn't want anyone to slip because it was everywhere. 

The NICU team saw that Bob was looking over at them, and they let him come over to watch. I don't even know how much time had gone by when I finally realized how quiet it was. “Why wasn't there any crying?” I started focusing on what the NICU team was saying. I heard the words, “she,” a few times. “I guess we have a girl,” I thought to myself. No one ever told me. Then I heard them say, “1 and 0.” Those were her Apgar scores. I still wasn't putting all of this together realizing how serious things were. A nurse eventually came over and said that Bob had baptized her. I nodded my head and felt relieved. 

Before I went into surgery, I told the doctor that I'd consider having my tubes tied. She said that she'd ask me again in the O.R. Once the baby was delivered, the doctor asked if I still wanted my tubes tied. She said that I needed to be sure because it was irreversible. I remember screaming inside, “No!” and with my eyes closed, I shook my head, “Yes!” It hadn't even registered with me that she wasn't breathing and would die. I can't live with always saying, “If only I knew...” What's done is done.

I felt relieved that Bob had baptized her. The seriousness of her condition was still unknown to me. I couldn't see anything. I couldn't feel any emotion. I had no clue. A nurse brought our baby over to me. She was very small and wrapped in a blanket. I only saw her face for about 5 seconds. They said that she weighed 2 ½ lbs. Again...shock! Eventually, they took her to the NICU, and Bob went with them. Before he left, he very matter-of-factly stated, “You know that she won't live.” I think that I was surprised and possibly said, “Really?”

I was taken to my room after surgery. Bob came to my room after some time. He said that he named our baby, Grace. I smiled and thought, “What a perfect name for her!” We never found out what the sex of our babies was. If we had known that Grace was going to be a girl, we more than likely would have picked out a different name. So, this is another reason for not finding out. We always loved the surprise. At some point Bob explained that Grace wasn't breathing when she was born. He watched them do chest compressions on her. They tried 3 times to intubate her. In the O.R. the NICU doctor was talking about Trisomy 18. He saw some signs that indicated this. Trisomy 18 is fatal.

The next thing I remember was calling the NICU to see how Grace was. The nurse said that she was stabilized. At about 3:30 p.m. a team of doctors from the NICU came to talk to us. A doctor told us of all the struggles Grace was facing. Her esophagus and trachea were not attached. She couldn't swallow or breathe on her own. She was so small because she couldn't swallow and that's part of the reason I filled up with so much fluid. Anything in her stomach would go into her lungs. She wasn't making any platelets and would just bleed. They mentioned something about spots on her eyes. I'm not sure if those were cataracts or if maybe she was blind. Her fists were also clenched. I noticed Bob wiping his eyes while the doctor talked. I still had no emotions.

Grace was on a ventilator, and she had a feeding tube going into her stomach. The doctors explained different surgeries that could be done that would stretch her esophagus and trachea so they could be attached. More than likely, she would never survive such a surgery. It's a difficult surgery for a healthy baby. 

Bob and I both agreed that we wouldn't want her to live by artificial means. That's when my tears finally came. When I was able to get into a wheelchair, I'd be able to go see her. We still hadn't called anyone. Bob called Pastor B. and he said that he'd be able to come around 6 p.m.

After 5:30, I was finally able to feel my legs and could go to the NICU. When we arrived, Pastor B. had just gotten there, too. I had no idea what to expect and was hoping that Bob and I could see her alone for a few moments. When we got into her room, she was hooked up to several machines with tubes going into her body everywhere, including her head. It was very difficult to see her like this. We sat in silence for what felt like forever. Pastor gave a devotion. He, too, baptized her. The only reason for this was that in the O.R. Bob didn't use water. He only spoke the words. He didn't want to ask for water because things were rather hectic at the time. It wasn't necessary for Pastor to baptize her, but it eased my mind. I felt as though I had taken this special moment away from Bob, but I still feel that Bob baptized Grace. I wish I could have seen that. Bob also said that he wasn't sure if they had her heart beating yet when he baptized her. (This wouldn't have mattered either. Grace came to church with us for 9 months and heard God's Word. The Holy Spirit was already at work in her.) So, Pastor eased both of our minds and I witnessed her baptism, too.

After Pastor left, we were able to hold Grace for as long as we wanted while she was still alive. The doctor had told us that once she was taken off the machines, they didn't know how long she'd live. It could be minutes, hours, days, or weeks. I prayed that she would go quickly.

The hospital had a camera that they let us use. We got pictures of her with both of us holding her. We kissed her head, said "We'll see you in heaven," and at 10 p.m. she was taken off the machines. Grace continued to breathe and we continued to hold her. At about 10:15, I noticed that it had been over a minute or two since I had seen her chest move. I handed her to Bob and said, “I think she's done.” Bob held her for a few more moments, laid her on her bed and had the doctors come in. They pronounced her at 10:20 p.m. She lived for 11 hours.

For the next 2 ½ hours, we made her foot and hand prints, moldings of her feet and praying hands. We bathed her, dressed her, and took a few more pictures. The nurses were wonderful, but there was a moment that one nurse was beginning to have a little too much fun it seemed. As she was putting Grace's foot in the plaster, she was talking to Grace. It just got weird. Then it got to a point where we started feeling uncomfortable and wondered, “What are we doing to her?” She wasn't some doll or toy. We decided that it was time to say, “Good-bye,” and we left. We left the NICU without our baby.

Bob took me back to my room, we hugged, and he went home. I only slept 2 hours that night. It was all very surreal.

At this time, the only person that we had called was our pastor. We had a daughter going to school in WI and living with my sister. We wanted to wait to tell anyone because we wanted her to hear it from us first.

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Some might think that we've fallen off the face of the earth. I don't remember ever being good at keeping in touch with others. Calling, writing, or sending cards hasn't been my strongest point. We've felt it was necessary to stay hidden behind our hill the last 2 years. It's how we have been able to survive...to somehow keep going when our summer plans drastically changed in May '10. Bob has always had the God-given knack for building things. He amazes us with his talent. I've built plenty of walls inside of myself without a hammer and nails...walls that need to come down. The only way I feel that I can do that is by writing. My mind goes blank when I try to talk...so many thoughts and no way of putting those thoughts into words except on paper.

Grief is such an unpredictable roller coaster ride of emotions. Everyone means well...we know that. We all want to say or do the right thing...some do, some don't. Some aren't able to overcome the awkwardness of being around someone whose baby died. We make others too sad, so it's just easier for them to stay away...easier for them. The subject is avoided and that has been more devastating for me than watching Grace die in my arms. Again...everyone means well. In the past, I've avoided others using the same poor excuses we have often heard, "I didn't want to upset you," "I don't want to make you cry," I didn't know what to say." Pretending it didn't happen doesn't work. Acknowledgement means everything. Seeing silent tears from a friend standing off to the side meant more to me than listening to the thoughtless chatter of someone who felt it was better to say something rather than nothing. That probably doesn't make sense, but many things on this earth don't.

Nothing I say is meant to hurt or blame anyone. I don't talk much about our daughters who we get to share our lives with. They are not my struggle. Life after Grace is, at times. I don't talk much about the loving support we have received either. I need to talk about the things that cloud my head...the things that keep the walls up. This isn't about me or anyone else. It's about how I can glorify God through this.

We no longer try to wrap our minds around God's plans for us. We just trust Him...and it's not easy. Our faith continues to be refined every day. For that, we are thankful.

What I share here will be difficult. I don't open myself up to many. I'm too afraid of what others will say or won't say. Maybe this will give others a better understanding of what goes on inside my head. If you think you've figured me out, please let me know, because I'm still trying to understand me.

As I just said, I want to glorify God through this. I want others to see that side of me. Some do and many don't. I continue to have a difficult time rejoicing on the outside, but I do. I have joy and peace but it is no longer the unquenchable joy and peace we long to find here on earth. My joy is found in the sure hope of heaven...the sure hope of seeing our loved ones again as we continue to miss them. It's difficult surviving someone that we imagined sharing our lives with. Thankfully, Grace shared her entire life with us, and we know without a doubt, that she lives in heaven with her Savior.