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Thursday, November 28, 2013

Thankful To Be Caleb's Mom

Today, I wanted to take a break from Caleb's story. I just wanted to say that I am so thankful to be his mom.

We had a rough start, and some days it is very hard to be the mother of a baby with citrullinemia. There is the stress and worry of if he's had enough to eat, messing with the G Tube, how high are his ammonia levels, is he developing as he should, etc. The list could go on and on, but today I am so thankful to be his mom.

There are days when I really wish Caleb could be a "normal" baby. God has really spoken to me this morning about how Caleb was made perfect, how God intended. I would not want it any other way.





He is an amazing gift to us, despite some of the difficulties we have from day-to-day. Watching him grow and learn is a gift from God. His smile and laughter light up my life.

Today, we should be thankful for what matters most in our lives: God and family. I am thankful that as much as I love my family, God loves them so much more than I ever could.

Happy Thanksgiving!

Psalm 100
Shout for joy to the Lord, all the earth. Worship the Lord with gladness; come before him with joyful songs. Know that the Lord is God. It is he who made us, and we are his; we are his people, the sheep of his pasture. Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name. For the Lord is good and his love endures forever; his faithfulness continues through all generation.

Monday, November 25, 2013

God's Loving Embrace

Today's blog picks up right where we left off. Caleb has left for the NICU, and we have to follow.

We walked out of the hospital with my parents. I remember my dad looking at me kind of funny.

"They just let you walk out of here, no wheelchair?" he asked.

"It was a natural birth. I really don't need one."

When we got outside, John had to take a few minutes to call his dad. Obviously, this was a very difficult situation for all of us. He was trying to be strong for me, but his strength was wavering. He sat on a bench to talk to his dad, and I went ahead to the car.

When my mom looked back, she saw some people talking to John. We sent my dad over, so John wouldn't have to deal with strangers at such a difficult time. As it turns out, it was a couple from our birth class. Their son was born the same night as Caleb. It was a blessing to see them. They came to speak to us with tears in their eyes, promising to pray for us.

It was a long, stressful drive, but we made it there before Caleb. It was 1:30 in the afternoon.

That Sunday is hazy in my mind. I know we went out to eat, but I'm not sure what else we did. My parents were there for a few hours but left to stay with our dogs. John and I spent a lot of time praying and finding strength in God.

Caleb did not wake up at all that day. We were able to stay in a room just outside the NICU. We frequently walked over there to hold him, read to him and talk to him. We constantly asked for updates. We were hoping for two things that he would wake up and/or pee. He hadn't done either in a long time. Later, we would find out that Caleb had been in a coma.

The staff at the NICU was great. They all loved our sweet Caleb and gave him a blanket that was made for the NICU babies.

It was a day of waiting, waiting for test results to find out what was wrong with our little boy.

Monday was a very long and crazy day. Caleb hadn't made any improvements. In fact, he was having more problems. During the night, he had bouts of sleep apnia, sometimes so bad a nurse would have to gently shake him to get him to breathe. He had an EEG that Monday to look for the cause. That afternoon, he had an MRI. It was during the MRI that our world was turned upside down.

The test to check his ammonia levels came back high, ten times what it should have been. This indicated a metabolic disorder (remember that rare thing the doctor said was highly unlikely?). Caleb needed dialysis and the NICU wasn't equipped for it. The doctor said Caleb would need to be transported to Children's Memorial in New Orleans immediately.



For the past two days, John and I had been in constant prayer for Caleb's life and the doctors' wisdom to find and fix whatever was making him sick. I can't describe how it felt at that moment. Time seemed to stop but fast forward all at once. I know that doesn't make any sense, but we had been waiting for an answer to his problem. We had been given one, and it was time to take action. We started readying ourselves for the drive to New Orleans. Caleb would be flown by helicopter, and we would have to drive.

After hearing the news, John had a moment where he needed to stop being strong and let out all of his worries and fears. He had been working so hard to be strong for us, but it was time for me to be strong for him.

He sat on the edge of the bed, and I held him. I tried to comfort him while I debate raged in my head. I had never prayed in front of John, out loud that is. It was at that moment that I could clearly feel God leading me into prayer. Despite the urgency of the situation, I tried to fight the urge and argue with God. It's truly amazing how it is so hard to humble yourself, even in times when it should be easy.

At last, I sat on the bed and prayed for our son's life and for strength to face the road ahead.

It was around 3 or 4pm, when they decided to transfer Caleb, and he didn't leave until about 9:45pm. During that time, we just waited. We comforted each other and spent time with him, all the while we knew he may not be alive when we got to New Orleans.

As we stood by his bedside, right before they put him in the incubator, I felt something I had never felt before, God's presence. From the moment I heard the news, I felt calm and at peace. At first, I thought that I was a bad mom. What kind of person could take this news in stride? But as I stood at Caleb's bedside with John beside me, I knew it was God, lovingly wrapping his arms around us.

"Can you feel that?" I asked John.

"What?"

"God is right here. I feel him right here with us."

He was an overwhelming presence in a time when I needed him the very most. It is only through him that I was able to stand there and be the rock that my family needed. I know it was God because I could not have done that on my own. I knew in my heart that God would get us through whatever was ahead.

A little while after that, they put Caleb in an incubator, and John and I had to see his tiny body in an incubator ready for a transport for the second time in as many days. It was hard to not be able to go with him.


Psalm 16:1 and 8-11
Keep me safe, O God, for in you I take refuge.
I have set the Lord always before me. Because he is at my right hand, I will not be shaken. Therefore my heart is glad and my tongue rejoices; my body also will rest secure, because you will not abandon me to the grave, nor will you let your Holy One see decay. You have made known to me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand.

Saturday, November 23, 2013

From Amazing to Terrifying

Today' blog is also from the journal I kept during our stay at the hospital. I am going to talk about Caleb's first two days of life,when things went from postpartum bliss to postpartum hades.

The first day of Caleb's life was what you would expect. I slept a total of ten minutes the night he was born. The adrenaline from the birth and the excitement of our new baby kept us both awake. We spent that first day bonding with our son, while he did the typical things newborns do. My parents were there to meet their first grandson. It was a great day.

It was when Caleb was just two days old that things started to go wrong. He was fussy for most of the day, and we attributed it to a stomachache. He was nursing well, though, so we didn't think too much of it.


Around 8pm, the nurse came to do vitals. He was concerned with how rapid Caleb was breathing. He was also jittery. His arms would constantly shake unless you held them; later, we would learn these were seizures.

  
His arms were constantly shaking in this position.
He was taken to a small room and monitored. After three hours, his breathing normalized, and the doctor wasn't too concerned. We went back to our room to get some sleep. It was hard to sleep that night. Caleb moaned with almost every breath he took. I didn't know it, but this was not normal baby behavior.

When we got up Sunday morning, two doctors came to check on him. They seemed much more concerned than they had the previous night. After they left, I tried feeding him. Since 8 the night before, he hadn't wanted to eat or wake up. He was extremely lethargic and disinterested in food. It had been nearly 12 hours since he had eaten. It was at this point that I knew something was wrong. I started to cry and told John that something had to be wrong.

"He's a totally different baby, today," I said, knowing this was a sign that something was wrong.

Around 10am, the doctors decided to transfer Caleb to a NICU in Lake Charles, Louisiana, about an hour from where he was born. The doctors thought it was probably an infection that needed immediate treatment. They also mentioned a possibility of a metabolic disease. We didn't know what that meant, but the doctor said they were extremely rare. It was unlikely that a metabolic disorder was the cause.

We waited until noon for the transport team to get Caleb. Before they arrived, he was given an IV and prepped for the trip. When they got there, he was placed in an incubator. I will never forget how small he looked in that incubator, so tiny and helpless. It was a surreal moment; one I never thought I would experience.



John and I did the only thing we could at that point; we turned to God. Trey and Susan, some good friends from our church, came and prayed with my parents, John and me. We knew that God would get us through whatever was ahead; we had to trust him completely.


1 Peter 4:12-13
Dear friends, do not be surprised at the fiery ordeal that has come on you to test you, as though something strange were happening to you. But rejoice inasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.

Wednesday, November 20, 2013

Our Son Is Born

Like I said, I want to start from the beginning. Today, I am going to share Caleb's birth story with you. It was such an amazing and perfect experience, and it is often overlooked because of everything we went through after he was born. John and I decided that we wanted a natural birth and chose the Bradley Method. It is based on the idea that the husband should be a coach to the wife and be an active participant in the birth of their child. We did twelve weeks of classes, complete with home exercises and practices to prepare. We learned a lot about the birth process and what to expect. John and I had a vision of how we wanted to bring Caleb into the world. The following is taken from a journal I kept while Caleb was in the hospital.

Our long journey began on Thursday, April 25, at 4 pm. After spending a little time reading, I got up to start dinner before we left for our last Bradley class. On the way to the kitchen, I decided to squat down to do my pelvic tilts (both are exercises the Bradley Method wants to be done several times a day). When I squatted, I heard a pop and felt a gush of liquid fill my shorts; my water had broken. They say you can't hear your water break; they are wrong.

I couldn't believe my water had broken for several reasons. First, I was only 39 weeks pregnant. Statistics show, that it is not very likely your first baby will be on time or early, so we were expecting Caleb to be at least a week late. Second, there is a small percentage of labors that begin with the water breaking, despite how birth is portrayed in movies and TV.

I stayed in the squat position, in utter disbelief. Our dog, Bailey, was staring at me, and I stared back. I kept repeating, "Oh no," over and over to her. I finally got it together and told myself to get to the bathroom I took a couple steps and realized that I should probably call John and would need my phone to do so. I waddled back to the living room to get my phone then waddled to the bathroom.

I called John to tell him the exciting news. His first response was, "Did you call Marilyn (our Bradley instructor)?"

"No," I responded. "I wanted to tell you first."

He then asked if I was sure my water had broken. I told him without a doubt; I was absolutely positive. I apologize if this is too much information for you, but when your water breaks this early in a pregnancy, you know. There is no mistaking it. I was in the bathroom for 45 minutes waiting for the fluid to stop coming.

After calling John, we got things moving. I called my parents to let them know. My mom decided to go ahead and make the drive from Alabama to Louisiana; it would take her about 8.5 hours. Then, I called Marilyn who told me that we should come to class if I could. All this happened while I was at my post in the bathroom. I was truly amazed at the amount of fluid that drains after the bag breaks. I made my way to the shower to get cleaned off and, somehow, had the presence of mind to shave my legs.

I finally got comfortable enough for us to head to our class at 6 pm. My water broke two hours prior, and I still hadn't really felt any contractions. During class, I started feeling minor contractions. They weren't painful, just a bit uncomfortable. We left after an hour, with the plan to get some sleep because we knew we would have a long night ahead of us.

When we got home at 7:15 pm, I laid down for my nap. By 7:30, the contractions were too intense to sleep through. I felt them all in my back...oh no, back labor! I had it from the very beginning, and it was awful. John suggested I take a bath and got it ready for me. The warm water was a relief on my aching back. It was the night of the NFL draft, and I remember apologizing to John that he was missing it because he was in the bathroom with me. It's amazing the things you say during labor. I stayed in the tub for about an hour.

The back labor was so intense that I decided to lay in bed. John helped me to our bed, where I laid on my side and tried to implement the relaxation techniques we had learned about in class. John was an AMAZING coach. He pointed out where I was holding on to tension and helped with my breathing. He basically rubbed my back with a tennis ball through every contraction. My contractions were two minutes apart, lasting 30-45 seconds and would stay that way throughout the entire first stage of labor. For those of you who don't know much about labor and birth, contractions are, typically, supposed to start off far apart and get closer together and last longer. Mine did not.

During the time I was in bed, John was running downstairs and back up to get me water, food or whatever else I needed. Like I said, he rubbed my back practically all night. I felt like he was doing so much more work than me!

I constantly felt the need to pee. John would help me to the bathroom, but I couldn't sit without feeling an excruciating pain in my back. It was unlike anything I've ever felt, and I couldn't use the bathroom, which was torture.

A couple hours into it, I asked John for the time. It was 9:45 pm. I was surprised that it had already been two hours but figured I had a lot of work left.

John suggested I take a shower to ease my back labor. We didn't stay in the shower long because I just wanted to be in bed. I got back in bed and asked for the time again. It was 10:45 pm. At some point around 11 pm, John was on the phone asking Marilyn when we should leave for the hospital. Our plan was to wait until I was close to transition (which is right before the pushing stage). I wanted to be in the hospital laboring as little as possible. We didn't think it was time to go the hospital yet, but I was getting a little worried. I hadn't noticed Caleb move at all.

After another 30-45 minutes in bed, we decided to make our way downstairs and get ready to leave. If I was standing when a contraction hit, I had to drop to my hands and knees. I couldn't take them standing up. Sometimes, John would do hip squeezes to try to relieve the pressure in my back, but mostly he stuck to rubbing it with the tennis ball. When we got to the bottom of the stairs, I had a contraction and dropped to my knees and rested my head on the second or third step. I stayed right there until we left for the hospital.

The contractions were so strong. They were still two minutes apart, lasting 45 seconds. John was trying to get us ready to leave, but he only had one minute and 15 seconds at a time to do things. If he wasn't with me and I felt a contraction coming, I would panic, so he had to do what he needed to do and get back to my side in between the contractions. We had another discussion about leaving for the hospital. I told him I didn't want to leave yet because I didn't think we were close enough to the pushing stage. I wasn't having many of the typical sign posts you would expect to see during transition.

The time I labored on the stairs was the hardest. The contractions felt like they were nonstop. I thought I was going to throw up from the pain. We didn't know it at the time, but I was transitioning.

Around midnight, we decided to leave for the hospital. I was still worried that we weren't very far into the labor, but I was more worried that I hadn't felt Caleb move. I also wanted to be in a bed and thought the hospital was the best place for us.

It was around this time that the contractions started to space out and get less intense. It was the best time for the drive to the hospital. On the way, I only had a couple contractions. Once we parked the car, we headed into the hospital. On the way in, I had a contraction, so we stopped and slow danced. I told John that I felt like I needed to go to the bathroom. This happened once more before we got to the elevator.

We finally arrived at labor and delivery. They put me in a triage room to take my vitals and check to see how far I had dilated. Originally, I didn't want them to check me at all. At this point, I didn't want to make it an issue; I just wanted to get into a bed. I was tired. I told the nurse she could check me, but I didn't want to know how far along I was. I was so worried that she would tell me I was just 5 cm and still had a ways to go.

The nurse went to check me and said, "We need to get you in a room. I see hair."

It took several seconds for me to understand what she meant: she could see Caleb's hair! It was time to start pushing. I want to pause here and just say how miraculous this was. We wanted to do all the labor at home. It was a "dream" to get to the hospital and start pushing. John and I did the hardest part of labor by ourselves, and it was amazing. John was an incredible coach, and I couldn't have done it without him.

I felt renewed as we walked to our room; it was around 12:30 am. We had to stop for one more contraction before I was able to get to the bed. I didn't have an overwhelming urge to push, and we were taught not to push until then. So we took our time getting settled into the room.



I got on to the bed on hands and knees, thinking that would feel the best based on how I had labored until this point. I tried pushing but wasn't giving it my all. I'm not sure if it was the position or lack of the "overwhelming" urge, but it wasn't very effective. After several contractions and pushes in that position, I switched to squatting but soon got too tired to squat and resorted to the classic style after about an hour and a half of pushing.

Almost two hours of pushing later, at 2:30 am, April 26, our beautiful baby boy was born. He came into the world at 19" long and 6 lb 12 oz and was perfect. He screamed for a solid five minutes and spent an hour and a half skin-to-skin with me.

Our birth experience was perfect. It went exactly how we hoped. God gave us a precious gift in our son and our birth experience. We are so thankful we have Caleb. His birth is a memory we will always hold close to our hearts.



Psalm 139:13-16
For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My form was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.

Tuesday, November 19, 2013

What We Will Blog About


We've decided that we are going to blog about Caleb's life with citrullinemia. I am going to start from the very beginning (his birth) and work my way up to now. The first several posts will be catching you up, so hang with us while we give a detailed account of his story. We hope you enjoy this blog. We want you to be inspired by Caleb's story and to educate you on a rare genetic disorder, citrullinemia.


~The Churchills