Wednesday, October 31, 2012

The Big Day

January 26, 2011
At 6:00am, the nurse came in and removed the Cervidil. She unhooked me from all the machines and said I could take a shower if I'd like. NICE! Well then she taped a rubber glove over my left hand to protect the IV ports. NOT NICE! Instead of a good clean feeling shower, the awkwardness of the rubber gloved hand made me feel like I'd just moistened all my filth. Gross. A real shower would have been top-notch!
At 8:00am, two new nurses came in for the day. One was a tiny skinny thing and the other was nice and fluffy. The two of them scooted around my room like two of Sleeping Beauty's good fairies. Had there been a third, I would have called them Flora, Fauna, and Merryweather. I told them I wanted to try and have you naturally since pain meds might interfere with your heart, and they were all on board! Thank you, Heavenly Father, for sending me these good fairies! They have delivered many babies naturally. I felt so relieved. All I needed was someone to believe in me. Someone that doesn't think I'm stupid. Because I'm not! I'm just determined to make the sacrifices I need to keep you safe. They started our pitocin right after 8:00. I was worried about the pain from the pitocin, but I really haven't felt any pain yet. You've been so good to me, sweet boy. I couldn't ask for a sweeter child. Today is 43 degrees and rainy. Yuck. But I guess if it were a beautiful day, I wouldn't feel like being cooped up in a hospital room.
A little before 10:00am, the nurse came in to check on you. She was having trouble finding your heartbeat. The two nurses left the room to get the doctor. The "Is it necessary?" doctor has left and now our doctor that we know and love is on duty. You've always been a sneaky little booger when it comes to monitoring your heartbeat, so I felt like you were hiding again.
Fauna and Merryweather came back in the room and told me that when our doctor came in, he would probably want to break my water. They were both leaning over my bed and talking to me so seriously. They said that if he breaks my water, it would be a lot more difficult to have you naturally because I wouldn't be able to get up and walk around.
Just as they describe, our doctor came in and before checking on you, he immediately sets up and says he's going to break my water. I looked over at Fauna and Merryweather standing side by side in the background. Both simultaneously just did a little head nod. So I said, "Well wait. Actually I really want the ability to be able to get up and walk, can we wait and just check on Charles Patrick first?"
He said sure and I swear I saw Fauna and Merryweather's shoulders go down in relief. They seriously make me want to laugh. I wish they had on green and blue hoopskirt dresses. They don't need the wings, they already flit and flutter around the room.
Our doctor got out the ultrasound machine and he turned on the doppler. He started sliding the doppler around on my belly and I saw you on the screen. Baby, for 39 weeks, I've looked at your sweet little body on a fuzzy black and white screen. For 39 weeks, I looked at the large blackened sphere that is your heart ... and its not beating...


Tears poured from my eyes. Daddy kissed me on the forehead. Our doctor was talking to us explaining that what we were looking at was your heart. It didn't matter. He didn't have to explain. I knew what it was. It was your heart. Your perfectly still heart. 
No, baby, no. I'm not ready for you to be gone yet! I keep thinking that maybe your heart will start beating again, but I know that's impossible. The nurses and doctor left us alone for a little while and we just hugged and cried. We talked about what to do next. My whole purpose of going natural was for your sake. I'm suffering the emotional pain of losing you, do I really want to put myself through the physical pain as well? I feel like I'm being weak, but I just don't know if I want to put myself through the agony when you're already gone. Daddy wants me to go ahead and get the epidural. He doesn't want me to hurt. I still can't decide. I don't want to have regrets. This is my first birth. I wanted it to be natural. 
We called everyone in the family to let them know you didn't make it. It was hard. Phone calls that shouldn't have needed to be made. I was still hesitant to get the epidural, but if I did get it, we could crank up that pitocin and get you here a lot quicker. Daddy looked at me through his wet eyes and said, "Let's just get the epidural. You've been amazing. I want you to get it, but I don't want you to have regrets."
At that moment, it was like we made a pact.
No Regrets. 
I promised myself or we promised ourselves, we would make the best decisions possible with no regrets. 
Around 1:00pm, they came in and gave me an epidural. I still wasn't in any pain from the contractions, but I wanted us to hurry up this labor process. 
The day ticked on and family trickled in to come give us hugs and cry a little bit. I was getting so hungry. I asked Daddy to slip me a gummy bear and he wouldn't. Just one gummy bear! I even told him that I wouldn't swallow it, I would just suck on it and he still wouldn't cave. Who knew I married such a rule follower! 
The sun started to come out a little. Was that your entrance into Heaven, little boy? Of course, I don't know the process we go through as our spirits make that transition from Earth to Heaven, but I like to think that the sun came out to let us know that you were Home and you're happy. The sun has always seemed that way to me. During the darkest, depressing hours of my life, there have been times that the sun would peek through a window, a shady tree, or the clouds. The warmth I felt on my face made me feel like it was Heavenly Father comforting me and reassuring me that everything was going to be okay. But maybe all those years, it was just you. Maybe it was you guiding me in the right direction to meet up with your Daddy, so we could bring you into this world. Since I was a little girl, I've always imagined that my future children watched over me from the spirit world. And when I'd make mistakes, I felt like y'all would say, "Oh mom, if you don't get it together, we are never going to get to Earth!"
I do a lot of imagining, don't I? I can't help it. I have dreamed of you all my life. I still can't wait to see your face. Please hurry!
Hours passed on. By 9:00pm, I was only 7 centimeters. I thought the epidural would speed things up, but it seems to have slowed us down. I'm miserable. I just want you to get here. The epidural only took on my right side, so I've been able to feel everything on my left side. With the pitocin on wide open, I still don't feel a single bit of pain. 
At 10:00pm, I really started to feel something. That something turned into a terrible pain that wouldn't subside. At 11:30p, I was finally declared 10 centimeters. Time to push! I thought the pushing process would be quick. I was wrong again. We pushed forever. I felt like I was pushing with all of my might. Suddenly I felt a release. Everything felt free and I couldn't catch my breath. I looked down at the doctor and see him holding this tiny little person. I felt the most amazing love flood through my veins. Tears fell from the corners of my eyes and I couldn't wait to hold you. Daddy was amazed by you. He hugged and kissed me over and over. There were tons and tons of nurses flitting around the room now. They whisked you away to clean you up in the corner of the room. Daddy went over to look. Then Daddy came back over to me with you in his arms. Our sweet doctor came over and said, 
"Happy Birthday, Charles Patrick."
He shook Daddy's hand and told him congratulations. Everyone is so proud of you. Daddy put you in my arms and I finally got to see you up close. I've never seen such a beautiful boy. You had the sweetest, fullest lips, so perfectly rounded and puckered for a kiss. You had a sweet little button nose that Mommy couldn't stop tracing with her finger. I loved the slope of your forehead to the tip of your nose. Its perfect for kisses too. You had tiny blonde eyelashes. Your hair was about 1/4 inch long and golden red. You had the longest arms and legs and the biggest FEET! You would've played basketball for those Clemson Tigers, I'm sure. Everything down to your toenails was completely perfect. 

January 27, 2011
Charles Patrick Barnhill
Born January 27, 2011 at 12:26am
4 lbs. 7 oz.   17.5 inches
The nurses just fluttered around the room. They kept calling you Charlie. Daddy and I had to tell them, "His name is Charles Patrick, not Charlie." 
And they would say, "Oh okay, Charlie," and just smile and continue to flit from here to there doing whatever they were doing. My whole pregnancy, I've cringed at the thought of people calling you Charlie. Now I just couldn't stop laughing! What the heck. Why were they calling you Charlie? Why weren't they listening to the Mother here? And why did I think it was so funny? Those nurses were not nurses that day. They were angels. They flew around the room. I never saw their feet on the ground. They carried you from here to there creating keepsakes for us to take home. They made us laugh and kept calling you Charlie all throughout the late night.
The entire nine months that I carried you in my belly, I worried about stillbirth. I prayed, begged, and pleaded with Heavenly Father to keep you alive until you got to Earth. I just couldn't bear the thought of having to push out a lifeless baby. I just knew that I couldn't do that. I have looked forward to giving birth to my first child for the past 33 years, the thought of this sickened me. But now here I am. Somehow, some way, our Gracious Lord has made it possible for me to do this difficult task and still be so proud. I am the happiest momma alive. You were born into this world with such a sweet silence. I adored your purplish skin and your tiny cold fingers. I've never been so happy in my life. I want you to know that even thought I was terrified of this happening, I am still so proud of the way you came to this Earth. You fought so hard. You were so strong for so long. I love you so much, sweet boy.

A very special photographer was here. She takes photos for an organization called Now I Lay Me Down To Sleep. She took some beautiful photos of us to keep forever. 
After our pictures, we invited the whole family back. There's only supposed to be 3 visitors at a time, but we had everyone come back at once to see you. Nobody could get over your sweet, round lips and your gigantic feet. I have never felt so happy and proud. 
We oohed and ahhed over you. Everyone thinks you're perfect too. After everyone left, Daddy and I took turns holding you. You fit so sweetly in our arms. We are so proud of you. You are such a fighter. The doctors told us you wouldn't live past 31 weeks gestation, but you lived 39 weeks and you fought hard during two whole hours of labor. Only a couple of weeks ago, I looked up the meaning of your names. Charles means strong and Patrick means noble. You are exactly that. You are a strong and noble son of God. You are such a noble spirit that you did not need to be tested with an Earthly life. You came to Earth just to receive your body and return to Heaven just as perfect as you left, unscathed by this sinful world. You never knew sadness, pain, or hate, only love. Immeasurable love. I am so proud and honored to be your Momma. 
The nurse asked if we'd like for you to stay in our room. Yes! We swaddled you up tight and laid you in your bassinet. You slept in the middle. Right where you needed to be. 
We slept a few hours until morning. Our nurse helped me get you dressed. She was so sweet. She was a different nurse with a different personality, but so kind and gentle, the perfect thing I needed this morning. She would talk to you and call you Pumpkin. I liked that because I was afraid to let her hear me talk to you. I thought she might think I was crazy. But I'm not crazy and she showed me that I can talk to my son. We laughed as we dressed you because you are too little for newborn clothes, but too big for preemie clothes. Luckily I had a preemie gown that seemed to fit perfectly. Our day in the hospital was up and down. We would cry, we would hold you, we would talk, we would cry, and we would hold you again. Your Daddy was so sweet to me. He kept telling me how amazing I was. Baby, I'm not that amazing, but it made my heart swell up when Daddy would say it to me. 
At about 5:00pm, we decided it was time to go home. I knew they were going to take you soon and I did NOT want to be left in that hospital room without you. While Daddy pulled the car around, the nurse helped me undress you again. Then it was time to tell you good-bye. I was just so sorry. I wanted to fix you, but there was nothing I could do. I'm just so, so sorry. We held you one more time and I kissed your sweet face. Then the nurse came in and whisked you away.... out of our room ... out of sight. 
A young man came in with a wheelchair. He and Daddy loaded up our bags and I sat down in the wheelchair. On my lap sat a blue box the nurses gave us. It was full of the sweetest keepsakes for us to have of you. As the young man wheeled me down the hallway, I thought of the excitement I felt as I came through those halls just two short days ago. We seemed to wind through the halls for an eternity and all I could think about was running back to that room to be with you, even though you weren't there. 
We got to the elevator and it took forever. While we were waiting, a nurse wheeled a little newborn in its bassinet over to the elevator to take upstairs to the nursery. I leaned up to look at him/her because I had such a fear that something was wrong with that baby too. I could barely see his little pink nose and I knew that he was okay. The nurse wheeled him around the corner and gave the young man the go ahead to take me on downstairs without her. That's when I realized that she noticed my blue box and didn't want to put the baby on the elevator with me. My blue box suddenly became like the Red A from The Scarlet Letter. Everyone knew what happened to me because of my blue box. Aww. I didn't need her to hide the baby from me. I just wanted him to be okay. We finally got on the elevator and as the doors opened on the bottom floor, the new shift of nurses all stood there waiting to go up to work. Tears flooded my eyes. I felt their glares. I felt their pity and I didn't want it. I wanted to pull my face inside my sweatshirt and get the heck out of there. Mothers leave hospitals with a baby, not a blue box!
On our way home, I talked to Daddy and told him I wouldn't stay sad forever, but please bear with me as I grieved. You have been a part of me for the past 39 weeks. Now I just feel so empty. Every decision I made, I made it with you in mind. 
My dearest baby boy, 
You were born with a hole in your heart. And when you left, there was a hole in mine.
You will always have a piece of my heart with you. Always! You are my first born son and you were absolutely and completely perfect. Every single chromosome!
As Daddy exited off the interstate towards home, I happened to look up at the sky and I saw a shooting star. Was that you, baby boy? Were you letting Mommy know that you are in Heaven now and you are safe in our Heavenly Father's arms? I think it was just a little note to Mommy that said, 
"Its okay, Mom. Don't be sad. You have all the reasons in the sky to smile!"
Good-bye, my sweet little boy. I will see you so very soon. I promise this isn't the end. It is only the beginning of something very beautiful. One day soon, I'll spend eternity with you. 
Forever and Ever, 

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Tuesday, October 30, 2012

"It's Time!"

January 25, 2011
Daddy and I woke up early for our 8:30am appointment at the doctor's office. First they did an ultrasound and then we went into the exam room to wait for our doctor. Daddy and I have been talking over the past 2 days. We know that the high-risk doctor was urgent to get you out two days ago, and our regular doctor is hesitant about that idea. We figured we can come to a happy medium. We decided that if our doctor decides to still postpone the induction, we are going to go ahead and schedule it ourselves. We are too worried that something is going to go wrong. I sat there nervous as could be. I have a feeling he is going to want to wait longer.
Finally, he comes in. He shakes both of our hands and leans against the counter and says,
"Well, its time!"
What? In all my years of imagining being pregnant with my first child, I was supposed to say those words. I was supposed to be at home timing my contractions, then walking into the living room and looking at Daddy and saying, "Its time!" Those were my words. But I didn't say them. 
My heart sank and was on fire all at once. He asked if we could come back at 5:45 tonight. Oh my goodness, sweetheart, this is it! I'm so excited and so nervous. I started shaking again uncontrollably. I looked at Daddy in a panic again. I wonder how many times I've given him that look lately? :)
Our doctor called Labor and Delivery and told them I'd be there at 5:45. Yikes! We drove home, and Daddy went in to work to finish up a few things. I needed to run a few errands including going to get a mani/pedi. It was an overcast, cold day, so I really wanted to just snuggle up on the couch until time to go back to the hospital. Daddy made me promise to go get my mani/pedi. He wants me to take a little time for myself before you get here. I just wanted pretty manicured toes before my feet are in a bunch of nurses and doctors faces. :-/
I forced myself into the car. I'm glad I made myself go. I made dinner for me and Daddy. Its the last I'll get to eat until after you get here. My meal: plain spaghetti noodles with butter and salt. I'm so nervous, its all I can stomach. I just don't know what to expect and that scares Mommy. I like to know exactly what's going to happen. I just hope and pray we are making the right decision. 
This entire pregnancy, I've prayed for you to be born alive. I cannot bear the thought of giving birth to a lifeless baby. It is too much to comprehend. I can't do that. I just can't.
We arrive at the hospital and we're greeted by a quiet, little nurse and the "Is it necessary?" doctor. My stomach knots became stomach rocks. We walked through the winding halls of Labor and Delivery for what seemed and eternity. She took us to the very last room at the end of the last hallway. Room 210. Its a HUGE room. I get in my gown and Daddy laughs every time he sees my bare bottom sticking out of the back of my gown when I go to the bathroom. 
At 7:00pm, they start me on a medicine called Cervidil. It is supposed to help soften my cervix so my body will cooperate when they induce me tomorrow. The nurse that's assigned to my room that even is a loud, brisk nurse. She isn't very soft in tone or demeanor. She kept trying to persuade me to take pain medicine. She even said they might go ahead and give me an epidural now. NO WAY! She was a nice nurse, but I didn't know how she wanted me to take medicine so badly. I told her that I was trying to have you without pain meds since they might interfere with your heart rate. She was not supportive of that at all. She said that its usually not possible to do that when you are induced. Thanks. I wish I had a little more support with having you natural. I know its going to be difficult, please support me. 
I tried to get some sleep, but it was all in vain. When the clock struck 6:00am the next morning with still not a single wink, I figured it was going to be a long day. 
Love, 
Mommy

Monday, October 29, 2012

Flip - Flop

January 21, 2011
Today's my last day of school. I left at 11:00am. It was so hard to say good-bye to those precious babies. I love them so much. They all hugged me over and over. When it was finally time to go, they all hugged me at once. I thought they might squeeze you out of me. Heehee. One of my little girls held me an extra long time, then she looked up at me and said, "But I don't want you to leave!"
It tore my heart in two. I waved as I walked away. A little tear welled up for you and for them. I'm not so sure I'll be back like I promised them. But its time to go meet Daddy.
We get to the doctor's office and our doctor took a look at you on ultrasound. He sounded hesitant to induce us tomorrow. He said my body has a 50/50 chance to accept the induction and he's afraid we'd end up with a C-section. I certainly wanted to avoid a C-section, but I'll do what I have to do for you, little boy. I teared up as he discouraged the induction. I mean, yesterday, I was crying because you were coming on Saturday and now I'm crying because you're not coming on Saturday. Don't they realize I'm hormonal here? So it looks like I'm waiting a few more days.
He said he wanted to see us again on Tuesday, and since he's on call on Wednesday, we'll probably schedule the induction then. Maybe I should be relieved that I'm getting a few more days to get ready for you.
Now Daddy and I are worried about you. The high-risk doctor had urgency about him for a reason, he wanted to get you out NOW! But our regular doctor wants to leave you be for a while longer. I'm not sure which way I need to be leaning, so I'm just trusting what our doctor wants to do. Hang in there, okay sweet boy?
Love,
Mommy

Sunday, October 28, 2012

A Sense of Urgency

January 20, 2011
Another appointment today! Its our last appointment at the high-risk doctor until you get here. I'm so excited to see you on your ultrasound today. The nurse did her thing, and then it was back to the little room with the brick wall out the window. I sat there with a little pep in my seat. I was excited to hear about you and how well you are doing. I was excited to hear what good things the doctor was going to tell us today.
Well listen here, you little hefty, you are now at a whopping 4 pounds and 8 ounces! Goodness gracious, big boy. You gained a whole pound and 4 ounces in just 3 weeks. The doctor came in and he had a lot to tell us. He was very anxious and had a lot of urgency in his voice. The pep I felt started to melt away and I could feel my body start to shake. It was like I had cold chills, but I couldn't control the shivers. I was scared.
He said that you have an intermittent absence of blood flow in the cord. That means that sometimes your heart will pump, but there's no blood flowing. He said that sometimes the blood would even back-flow. He said the longer we left you in my belly, the more we risked stillbirth. I looked at Daddy in a panic. He knew I didn't want to induce our labor.
He said he was sending us to see my regular doctor tomorrow and we could hopefully induce on Saturday.
Saturday?!?!?
What was two more weeks until I get to meet you, just turned in to two more days. I couldn't stop myself from shaking, and I was embarrassed that the doctor would notice. I rubbed my hands tightly between my knees as I sat on the chair to pretend that I was just cold and trying to warm up. A million thoughts ran through my head. I'm not ready! 
The doctor's urgency and worry was enough to scare me, and I knew we needed to listen to him. He wouldn't let us leave his office until he had set up an appointment with my regular doctor for tomorrow. My regular doctor who I know well and love so much is also on call this weekend, so he would be there for the delivery. The high-risk doctor thought we had the perfect scenario to go ahead and schedule the induction for Saturday. 
Daddy and I walked out of the hospital so silently. I called my momma, your Neena, in tears. I'm not ready to have you on Saturday and things aren't going the way that I wanted them to. I said many, many prayers. Actually I think my mind was saying a constant prayer that just kept going. At night, usually Mommy goes to bed really early and Daddy is a night owl. Well tonight, Daddy went to bed at 8:30 and I stayed up half the night. I couldn't help it; I couldn't sleep! I did laundry, I cleaned, I mopped. I mean, after all, I have to have a clean house if you are coming on Saturday!! I finally came to terms with the idea that I'm going to be induced and I'm meeting you this weekend. Oh my gosh, I'm meeting you this weekend!!!!!
Love, 
Mommy

Saturday, October 27, 2012

Snow, Snow, and More Snow

January 18, 2010
Eight days ago on January 10th, it snowed!!! We were supposed to start back to school on that day from our Christmas break, but it was a snow day. A teacher LOVES a snow day. It was so beautiful and powdery. We never get snow like that. Our temperatures are usually cold enough to snow at night, then you wake up the next day to the wet, hard, crunchy stuff because its already 50 degrees and melting. You could almost go out and play without a coat on. But this time was real snow. I loved it so much. Me and you walked outside (very carefully) through the back door. We went down the back of the house to the sidewalk and then walked the long way around to the front yard. I wanted a pretty picture of our sweet little house with the beautiful snow without Mommy's footprints.
All week, the temperatures were forecasted in the 20s during the day and in the teens at night. Hmm, this snow might be here for a while, little boy. Not a good time to decide to come to Earth, okay? I prefer to birth you in a hospital. Not in a car on the icy highway or in my living room, deal?
Well I was right about the snow. We got about 6 beautiful inches of the powder soft snow where we are and within a day the snow melted a good bit and turned into about 4 inches of solid, slick ICE!
I'd been forbidden by Daddy to step foot outside. I guess he's right. I could slip and hurt you, baby, but cabin fever is the pits!
I had to miss my doctor's appointment on the 11th due to the ice. We ended up being out of school all week long. I felt like we lived in the colonial days. Every morning, I packed Daddy a lunch and he walked to work while I stayed home. I enjoyed snuggling up on the couch all day long. I worked on my lesson plans for my maternity leave day in and day out. There's no telling how long I will be out with you. I told my sweet principal that I didn't know what our lives would hold once you got here, but that I may not return this year depending on your health. It was hard to make that decision, but from the sounds of things, you are going to live for a short while. I refuse to let you die in someone else's care. You are going to be with your Mommy every step of the way. I will hold you tight when its time to say good-bye. I can't stand the thought, but it would hurt worse if you passed while I was away from you.
On January 13th, it was finally melty enough on the roads that we rescheduled our doctor's appointment for the Beta Strep test. It was with my favorite doctor. I told him what happened at our last appointment and he was saddened also. He's such a good doctor. He did our test and it actually came back negative, so we are in the clear! :)
That's been the past week, and today was finally our first day back at school. The children were amazing. We had so much fun today, and they had a zillion questions about you. I made them laugh when I told them how much you ate during Christmas. Each time I'd say something about you, I'd pat my big belly and say, "I'm proud of my big boy!" They'd get so tickled.
Right after school, I had another appointment with the "Is it necessary?" doctor. I worried about seeing him again. I wondered if he was offended that I went and had the test done anyway. I know I should care less if he's offended, but I can't stand knowing I've offended someone regardless of the circumstance. I wondered if he was going to say something. What if he was ugly to me? What if he told me what he really thought of you?
Just like always, I worried for nothing. He didn't say anything or even act differently. I guess I should have known that. It turns out that I'm one centimeter dilated, 70% effaced, and you are -3 (that just means you haven't dropped down any). He said that I've progressed enough that we could induce next Thursday or Friday. INDUCE?? What? No! I do not want to be induced. I want you to cook as long as you want to. I also know that if we induce, that nasty, sneaky drug called pitosin will make my contractions unbearable. I'm afraid I would not be able to handle the labor without pain medication if we induce. I have another appointment in two days at the high-risk doctor. I will tell him we can't induce. Its just not what I want. Keep cooking, baby!
Love,
Mommy

Thursday, October 25, 2012

Blow to the Gut

January 5, 2011
I had a doctor's appointment at the regular office today. I was seeing a different doctor in the office that I have not seen yet. I will have a test done called the Group B Strep. It is a bacteria that a mommy can carry that isn't harmful for her, but it can be very harmful, even deadly, for baby. If I test positive for this test, I will need to take an antibiotic during labor to keep you safe.
He did his usual check-up, we talked for a minute, and then he started to leave the room. I said, "Oh wait, I think we were supposed to do the Group B Strep today."
He paused and turned back toward me. His response was unexpected. He said, "The question in this case is....
Is it necessary?
Throughout this whole journey, I've done my best to trust the doctors. That's all I can do, really. I have to trust them. They are the experts. I'm just the one carrying the baby. I'm going to need their help to get you here. So I didn't say anything. 
I left the doctor's office heartbroken, but also completely flabbergasted. Is it necessary? Is it necessary? By the time I get to my car, the tears are flowing freely 
YES ITS NECESSARY!
Baby, there is not much I can do for you in your condition, but one thing I CAN do is provide you with a healthy delivery! I was so sad all day. I know that the odds are against us, baby, but there's still hope that you will be born alive. I've gotten so much positive news lately that I truly believe I'm going to be able to smell your sweet breath on that special day and look into your sleepy eyes and introduce myself to you as your momma. Face to face. I can feel it. Well, what if you get here safe and sound, you are sustaining life like we all hope, then you die because of a bacteria that I did not prevent! I couldn't live with myself. I would be the reason you were gone, not your condition. As I have grown into this whole suit called Mommyhood, I have realized that while you have no voice, I must be your voice! I've never been one to speak up. I'm too trusting. I can't just let this go. I can't just not have this test because one doctor thinks its not necessary. 
I called our Perinatal Support Nurse from Perinatal Comfort Care. She is the most beautiful angel that's been sent to me on this journey. She's the one we met in Greenville that day that gave me the notebook and so much hope. I keep in touch with her often just because she's such a good source of information and basically, a friend who understands. She felt just like I did. It is so necessary. I was relieved that someone with medical expertise also shared my sadness in today's happenings. She made me promise her that I would make an appointment with a doctor I trusted to do the test. So I did. January 11th. One thing she said to me that really stood out and touched my heart was...
"Together - we can change the culture of how doctors feel about babies like Charles Patrick."
I loved that. I would love to help other mommies who have babies like you. You have completely changed me. I see life and motherhood so differently now. Thank you, son. 
Love, 

Wednesday, October 24, 2012

Nursing You To Health

January 4, 2011
Tonight I took a breastfeeding class. I am not sure if you will be able to nurse when you are born, but I would sure hope so. I know that my breastmilk is perfectly designed for your body. Isn't that amazing? For nine whole months, a baby grows inside of its momma. During that nine months, my body gets to know you so well that it designs the perfect milk. Whatever your little body needs, my body will produce. Even when you're outside of me, our bodies are so in tune that my milk will change to fit your needs. I just think that is such a beautiful part of God's creation. I want you to have my milk. I know that even if you can't suckle, I want you to be given my milk through a feeding tube. I know it will help you. If there is any medicine that is perfectly designed for you, it is the milk that we produced together.
So I went to the class. It was very informative, but I still had so many questions. Our adventure in feeding will be much different than how she was teaching. I stayed after class to talk with the lactation consultant. I told her my feelings about breastmilk. MY breastmilk. I told her your condition and I told her exactly my wishes when you get here. I am afraid that the doctors and nurses won't allow me to give you my milk. I'm so afraid they will just do what they always do with sick babies. Maybe I'm being naive about the whole topic, but its what I want to try.
As I talked to her, tears welled up in her eyes. She was speechless to hear me speak of you. You are such a little missionary, Charles Patrick. You touch everyone's heart so deeply, and you don't even have a voice. I will be your voice, little boy. I am your mommy and I will take care of your needs. When I say she was speechless, she was truly speechless. She told me that your story is so touching and she couldn't agree with me more. She hopes she's on duty when you are born. I hope so too.
Love,
Mommy

A New Year

December 31, 2010
I cried because in just a few short moments it will be 2011. 2011 is the year you will be born. It may be the year we say good-bye. Either way, I know it will be the end of you inside of me. It makes me sad. I love having you an actual "part" of me.
Love,
Mommy

Monday, October 22, 2012

Dynamic Duo

December 30, 2010
Today's a big day. We had a doctor's appointment at the high-risk doctor, and then we had a meeting with to very special, very important people at the hospital. Our appointment was at 7:30 again this morning. The last time we saw you, you weighed 2 pounds and 14 ounces. You are now 3 pounds and 4 ounces. Way to go, bubby! The doctor said that you are looking good and I didn't have to come to their office anymore if I didn't want to. In 3 more weeks, I'll be 38 weeks. As much as I'd like to say good-bye to 7:30am appointments, I think I want one more report card from you, buster, before you get here! So we made our last appointment in 3 weeks. Our last appointment. I'm so excited to meet you!
After we finished up at the doctor's office, we went and got some breakfast and then headed back to the hospital. We are meeting a fantastic husband and wife team. The husband is the Neonatologist in the NICU and the wife is the hospital chaplain. At some point after your birth, one of these fine people will be at our side. We got to talk to them for about an hour. They were so impressed with you. The doctor asked us if we had any questions and I told him that I didn't really know what to ask. He said the NICU doctors had a meeting last week and they talked about you, Charles Patrick! You're so popular. I can't believe it is still weeks before you get here and the doctors already know you and are preparing for you. I am so impressed. The doctor told us that you have a hole in your heart just between the two chambers. He said this isn't immediately fatal and a baby can sometimes live up to 2 months. Two whole months?? I would be in Heaven. I would give anything for just 2 minutes with you. Two whole months would be a gift from God. Mommy and Daddy told them about our wishes for you. They both thought our decisions were very courageous. You could see in their eyes how much they were touched by our love for you. I loved learning just a little bit more about you today. I am so happy that everyone is on board for you. Everyone is ready to get you here safely. You are amazing and everybody knows it!
Love,
Mommy

Merry Christmas

December 25, 2010
Merry Christmas, baby boy! I woke up early this morning before Daddy woke up. I'm always so excited to see what Santa left us in our stockings. I couldn't help but think of you this morning. I cried, of course. I wonder if I'll get to spend a Christmas with you. They are calling for snow today. Snow is rare in this little ole town of ours, especially at Christmas. This would be the first white Christmas since 1963 if we get some snow today. That was 47 years ago! Phew!
Daddy finally woke up and we headed down to Neena and Poppy's house for Christmas breakfast. We always drive to their house to see what Santa brought your cousin, JayJay. After a little rest, we head to Grandma's house. Uncle Mark, Aunt Jane, Aunt Lisa, Nancy Hunter, Preston, and Will were all there. We played games, ate tons of food, and opened presents. Then guess what?? It started snowing! A beautiful white Christmas all for you! What a special Christmas. I'm so glad you were with me to experience it. Another 47 years may pass before we see it again, but me, you, and Daddy got to enjoy this special event together. I love you so much, baby boy. You are my beautiful gift this Christmas.
When we got home, there was one last gift left under the tree. It was all for you. Daddy and I opened it together. It was a white Dupioni silk romper with matching cap and knit socks. If I have to bury my son, he will be in the finest. I love you, little boy.
Merry Christmas.
Love,
Mommy

Sunday, October 21, 2012

Rallying the Troops

December 11, 2010
The community has really come together and supported you, Charles Patrick. I have been so impressed and humbled with all that has been done for you. It just amazes me day by day. You have touched so many hearts. I have to back up a little bit to tell you how.
On November 13th, we had a yard sale on your behalf in our little front yard. It was your Neena's idea. She called her two sisters: Gunkie and Mimi and all of mommy's cousins. She asked them for donations for a yard sale to benefit you. See, we just don't know what to expect when you get here. You may live and you will live in the hospital for a long time. If you get to come home, we will need to turn our house into a hospital too. It will be hard, but I will do whatever I need to help you.
Our sweet family all pitched in. Even your cousins that live 3 hours away drove to our house to deliver some donations for the yard sale. Your Aunt Summer said our yard looked like a Wal-Mart! :)
We woke up early on that Saturday morning and got everything set out. You and me sat in a comfy rocking chair with my Clemson snuggie and rocked and rocked all morning. It was a blast and a huge success! I was blown away. You have an awesome family, sweet boy.
Well when my principal heard about the idea of a yard sale, she wanted to do the same thing. She rallied all the teachers and organized a terrific yard sale today. This time we had it at our school in the gym. The gym was full of stuff. The sale lasted from 8:00am to 1:00pm. In addition to our yard sale, the sweet lunch ladies made 20 cakes to sell. They looked so delicious, I wanted them all. We had a 50/50 raffle. Whatever we raised today, 50% would go to the lucky winner and 50% would go to you! Since it is so close to Christmas time, we had an ornament decorating station where people could buy and decorate a Christmas ornament.
I was very nervous for today for some reason. Its always my biggest fear that no one will show up. It was also a Saturday, I'm sure my teacher friends don't want to spend their Saturday at school. Mommy is so silly, always worrying for nothing. It was a great day. We had a steady flow of customers all day today. One of my sweetest friends stayed such a long time to help out. She always keeps us laughing. She was hiding and throwing things at us when we weren't looking. She also found a giant horse head lamp and galloped around the gym all morning with that silly lamp. I don't know what I'd do without her keeping me smiling. You will love her. We raised so much money for you. The sweet lady that won the 50/50 raffle even said to give all the money to you. So many people love you so much.
There is a sweet little lady at church that always asks about you. No matter our conversation, she always ends by saying, "He is going to be our miracle baby." She is so precious and her faith is so strong. Each time I go to do regular doctor's office, the nurses can't get over us. They are always bragging about how we look and how happy I am. The nurses at the high-risk doctor say that I'm the prettiest momma in their office. Everyone is so kind. It makes me feel good, but I can't help but be happy about you. You are my first child. You are perfect to me! You've got a whole community behind you, Charles Patrick. I get chills just thinking of it.
Love,
Mommy

Saturday, October 20, 2012

Cloud 9

December 9, 2010
Today is another appointment at the high-risk doctor's office. Its at 7:30am. At our last appointment, I was quite distraught at all that we heard from the doctor and going in to work afterwards was even harder. So today we took the whole day off. Maybe we'll do a little Christmas shopping after our appointment.
Daddy isn't with us today. This is such a busy time for him at work, so I hope we get some good news that I can call daddy with.
By golly, what a terrific day! You are doing so well, sweetheart. You gained one pound and one ounce! You are a precious 2 pounds and 14 ounces now. Oh I can't wait to kiss those cheeks! Keep chubbing them up for mommy!
The doctor also said that your blood flow looked better today than last time. Those aerobics and somersaults you are doing in mommy's belly are good exercise! :)
Last is my most favorite news of all. The doctor said you don't look sick enough to die in the womb! Oh mommy can't control her tears while she's writing. Heavenly Father hears and answers prayers! Sweet boy, you are my most precious blessing and I can't wait to meet you on your birthday.
Mommy's tears just turned into laughter. Your furry big sister, Beatrice, is lounging in my lap as I write and she started licking her lips. Gah-lay, her breath stinks! She is the cutest thing, but her breath is repulsive. I know you will love her, but I will do my best to keep her breath out of your face. Mommy is sweet like that.
Well I am on Cloud 9! We had a great day. We went Christmas shopping and bought things for you and your cousins.
You know, if you keep growing like you are, you might just be a 5 or 6 pound baby. You beat those odds, baby boy! I love you so much and I am one proud mommy.
Love,
Mommy

Friday, October 19, 2012

Class

December 7, 2010
Daddy and I went to our first childbirthing class. It is being taught by a nurse that will help deliver you. We got to meet her a few weeks ago and she gave us a private tour of the labor and delivery unit of the hospital. I really like her a lot. We have three classes with her that are two hours each. I really want to have you without any drugs or medications. I've been doing my research, and I've read that epidurals can slow the heartrate of a baby. Sweetheart, your heart is our place of most concern. I need to do this without anything tampering with your heart. I'm hoping we learn some things about natural childbirth.
To our surprise, we were shown the birthing videos tonight. I figured she wouldn't scare us first time mommas on the first night of class, but she is breaking us in good. We watched two live births: one with medication and one natural. As she was preparing the video, your daddy was just a squirming in his seat. It was a little funny. He'd shift from one side of the seat to the other side rubbing his head; I think he was nervous about watching these births.
But then the most amazing thing happened, when that baby boy came out of his momma, his eyes were fixed on the T.V. and he said, "Look at that. That is amazing."
It was in the sweetest and most sincere voice. I couldn't help but get teary. Not only because of my sweet husband's reaction, but because I want that so badly. I love you so much, Charles Patrick. It made me long for you. I want you to be born alive. Please, baby boy. Please, be strong. I cannot imagine trying to do this with you already gone. It is my only prayer. Please. There are lots of people praying for you. The whole community is praying for a little boy they've never met. They love you and it silences my soul. I am so humbled at how much they care for you. People I don't know, know you! You are already such an important person. Please hang in there.
I really loved tonight's class. I love learning about what will happen to my body as you prepare to enter into this world. Its all such a miracle. After all, tomorrow I will be 32 weeks. Most babies with T18 do not live past 31 weeks gestation. We are one full week into our miracle, sweet boy. Mommy loves you!
Love,
Mommy

Thursday, October 18, 2012

The Jar

November 30, 2010
Just before Thanksgiving break, something very sad happened at school. It started out as just another typical day. After recess, I take the kids to P.E. As I was picking them up, one of my little boys looked at me and said, "Mrs. Barnhill, XXXX said that when your baby is born, he's going to live for 2 weeks and then die."
My heart sank to my stomach. My eyes welled with tears and my jaw froze into place. What was only 3 seconds, 1,000 questions ran through my head.
How could he ask me that question? Who told them about you? How do I answer him? Do I lie and tell him he's wrong? Why is he being heartless about it? Who asks questions like that?
That's when my mind snapped back to reality and I realized, he's not heartless. He's a curious little second grader that has heard something out of the ordinary. Kids don't hear about babies dying. He's curious and he's seeking my help for understanding. But the tears in my eyes were getting heavier and heavier and I knew I just couldn't talk about it right now. So I did what I always do when the kids ask me a question in the hallway. I put my finger over my lips and whispered, "We're in the hallway."
Bless his heart.
We walked back to the classroom and I was still on the brink of breaking down. I knew this meant I would need to bring up what's going on with you, but I wanted to do it when I decided to do it, on my own time. But of course, when you work with 7 and 8 year olds, nothing is on my time, it is their time. My biggest fear was how inquisitive they would be. Their little questions and sweet spirits would just tear me up, and I wanted to stay strong for them. I can only imagine their questions. They would be raw questions, as children don't yet have the filters that we acquire when we mature. What if one of them asked me what a dead baby looks like? I am sure their questions would be more about death than about life. The thought of it all just made my stomach hurt. I shouldn't be the one that had to explain something so tragic.
There was lots going on in the office today, so I couldn't ask for someone to come cover my class while I pulled myself together. Instead, I just got my children busy on some work, and I took a little moment to take a couple of deep breaths. I finally felt some control returning. The sweet Lord answered my prayer and no one else asked more questions about you the remainder of the day.
After school, I went to speak with my principal. I figured out how the children were learning about you. We are on lots of prayer lists at the local churches. One child heard about it at their church, and you became the topic on the playground today.
My principal was so supportive. I'm nervous to tell the children about you. I also am not sure of my students' parents, and if they would even be comfortable if I told them about what is wrong with you. Its a lot for a child to swallow. Babies are born, and they grow up. Babies don't die, and you certainly don't bury them.
We came up with the most amazing idea, the "Charles Patrick Jar". First, I would send a note home to parents explaining to them the heartbreaking news. I would let them know that I'm aware that some of the children know through their churches, but I want them to hear it from me. The jar is going to be amazing. If the children have questions about you, they can write it on a slip of paper and put it in our Charles Patrick Jar. I can read the questions after school. This way, if I need to get emotional, I can do it and not be sitting in front of my class. I can't come to terms with the question, and also think carefully of an answer appropriate for a young child. I can also weed out any inappropriate questions.
So over our break, I got you a precious little jar. I had a friend put your name on the side of it. I sent the note to parents at the beginning of the week, and today was the day that I spoke to the children.
It was a little hard. My voice was shaky, but I stayed strong. When I told them that you might not live, their sad and genuinely concerned faces almost got to me. I told them that they could probably see that talking about you made me sad, so I needed a special way for us to talk about you. That's when I told them about your jar. They absolutely loved this idea, and I could see them just itching to write you a note.
Before we got back to our schoolwork, I told them that they didn't have to be sad. I told them that you have been sick for a long time now, but I didn't let it make me sad. You are still alive in my belly. You're growing, kicking, and happy, so we should be too. I told them that doctors say that you won't live very long, but there was only one person who could tell me that you won't live and that was God.
When the children got back to their seats, they all wrote you notes! :)
It was the sweetest thing. Some were questions, but some were just notes to you telling you to be strong and hang in there. I had one favorite. I will remember it forever. She said,

"Mrs. Barnhill, you were right about God."

*smiles*
Love, 
Mommy


Thankful

November 25, 2010
THANKSGIVING! Happy Thanksgiving, sweet boy! Today and everyday I am thankful for my sweetest little son, Charles Patrick, my wonderful husband, K.C., and my furry daughter, Beatrice.

Wednesday, October 17, 2012

I'd Give You My Heart, But You Already Have It

November 18, 2010
Thank goodness today finally came!! I have waited and waited and waited. First let me back up and tell you a little bit that has passed. We've had two baby showers so far. Holy moly, Charles Patrick, you are LOVED! I'm sure you remember that I was frightened, at first, to even accept a shower. I hate for people to spend their money on us and we don't even know what's going to happen when you get here. The economy is tough these days, and I know that everyone is working hard to make ends meet. I'd be so thankful for that set of bottles, but what if you need a feeding tube? I'd be floored if someone bought me that car seat, but what if you never come home? These are the daily inner battles I would fight. Shortly after that visit to the Temple, I asked myself, "Where's my faith?"
What if you do come home? Am I willing to have nothing prepared? Do I have such little faith in you that I'm not going to get our home ready for you? Where's my faith that you WILL come home? That changed everything, baby boy. That's why I went all out with your nursery. You are coming home and Mommy and Daddy's faith will bring you here!
The gifts have been amazing. Everyone has been very thoughtful about what to give to you. I've received keepsakes and necessities. I couldn't have asked for more. I've received a crepe myrtle and daffodil bulbs to plant in our yard on your behalf. I've received jewelry with your name on it. Journals, picture frames, photo albums, blankets embroidered with your name, such beautiful, wonderful gifts that matter not whether you come home or not. We've also received the necessities: diapers, wipes, clothes, soaps, lotions. You name it! I feel so blessed, overwhelmed even. Its not just our faith that will bring you here, its EVERYONE'S! I can't believe how much you have touched lives and you have yet to take a breath. That makes me feel so happy to be the mommy of such a precious spirit. I can't wait for you to be that miracle that changes hearts.
Well, as I was saying, I've been waiting an eternity for today. We are finally back at the high-risk doctor for our ultrasound to check on you. We had to wait 6 weeks. I really don't like going that long without taking a peek at my baby.
Our appointment was at 7:30am, the first appointment of the day! I hope we get called back quickly. I'm so curious about this clinic. It is always full. Do all these women have something wrong with their babies? I don't dare ask, but it makes me so curious and so sad at the same time. Our appointments have normally been scheduled at 3:00pm after school. There has always been such a crowd that daddy and I wanted to trying coming at 7:30am. Still a crowd! So very curious.
Finally we get called back and we start the ultrasound. She took lots of pictures and measurements. The nurses never say much during the ultrasound, we just have to wait for the doctor to debrief us afterwards in the tiny room that faces the red brick building.
The whole time the nurse was taking your pictures, her head was right in my view of the monitor. I was getting so irritated, I wanted to tell her to move her fat head. But that would be ugly, so I didn't say it. :) Being polite and holding our tongue is something mommy will teach you, sweet boy. Hehe.
You were so sweet. You had your little hands together and you kept putting them by your face and under your chin. You looked like a little angel....which you are! You are my perfect little angel.
After the ultrasound, mommy and daddy went back to the room with the two chairs, the box of tissues, and the window that faces the red brick building. We saw a different doctor today. There are 3 doctors in this office and we love them all! This doctor is very thorough. He tells me everything, and I love it! I sometimes have a hard time keeping up with his medical talk, but somehow I take it all in. I want to know everything about you.
Daddy likes him a lot too because they talk about football. Your Daddy! I can't take him anywhere. The doctor also told him he looked like Matthew Fox. HA! Hubba Hubba, daddy!
We got lots of information about you. You are one pound and thirteen ounces. You are small, but that is typical for Trisomy 18 babies. Mommy has a clot in her umbilical cord, which hinders your blood flow. They said that all of your internal organs look good, except  your heart.
This made me wonder. Should I change your birth plan? Should I opt for that immediate surgery? If the only thing wrong is your heart, couldn't it be fixed or helped? They do heart transplants and open-heart surgeries all the time! So I asked the doctor and his face said it all. I guess he didn't really need to tell me that he felt our current birth plans were still the best option. :(
This whole journey is a question mark. Will you live? Will you come home? What will life be like? Will you be stillborn? Will I miscarry before even having the chance for any of the above? Well today finally gave us an answer. I'm so sorry, Booboo. I wish I could make it all better. I know I could override the doctor's opinions and have them operate or provide a transplant, but the odds of the transplant working are very, very slim. There is another baby out there who would survive with that heart. I hope you understand why we must make this sacrifice. As much as I want you to live, as much as I will do anything to save you, I can't take from another sweet spirit who is more likely to benefit from the organ transplant. Trisomy 18 affects every cell in your body, and there's just no way we can fix every single cell.
So today was sad news again, but Mommy's okay. I cry when I think about it, but I smile when I think about YOU! It just comes natural. No matter the news, good or bad, you make me 100% happy. I still can't wait to meet you. I'm 29 weeks along. The typical gestation of a T18 baby is 31 weeks and mother's usually miscarry. Hang in there, baby boy! I love you.
Love,
Mommy

Tuesday, October 16, 2012

A Nursery Unfolds

October 18, 2010
I have been frantically working on your nursery. I decided on your theme immediately after we found out you were a boy.
It was a given. I asked your daddy if that is what he wanted to do and he was like, "Heck Yeah!" Hehe. I am doing it mostly for your daddy. He wanted a boy so badly. When we found out you were a boy, I know he was so excited. At the same time, its so crushing because we don't even know if you will live. So this is for him. I know he will love it just as much as you. I scored some 1977 vintage sheets off Ebay, which I prayed to the good Lord for forgiveness as I cut them up into pieces. I made a crib bumper, quilt, and pillow out of the sheets. I bought some plain fabric for the crib skirt, fitted sheet, and mobile. Went back to Ebay for some Star Wars Christmas ornaments to hang from your mobile: the Death Star, 2 X wings, and an At-At. I am almost done. I'm working hard to get it ready so quickly because I have a baby shower for you on November 6th at OUR house! Everyone is ready to see your nursery, so its kind of like the "unveiling". :)
Daddy has gone to Grandma's house and pulled out all his Star Wars toys. Oh my. I am quite positive that at some point during this pregnancy, I will go into your room and find him playing. He's a big goof.
I had a doctor's appointment today at the regular office. This was a different doctor. She actually delivered your cousin, Silvie. I liked her pretty well. She was quiet though and didn't really talk much business. She just asked me a couple of questions and that was that. Of course, it was close to 6:00! My appointment was at 3:00 and I was still there waiting at 5:30. A nurse told me she was sorry I waited so long, that normally they try to get their pregnant patients in and out quickly. This didn't make me feel any better since this isn't the first time I've spent over 2 hours at their office. I guess I just feel a little neglected. There was no other pregnant momma sitting in that waiting room. I hope its not because you are sick that doctors don't feel the need to make me a priority. I'm sure I'm just feeling sorry for myself, but its how I feel nonetheless.
Love,
Mommy

Sunday, October 14, 2012

Earth Angels

October 16, 2010
I have what I call Earth Angels. There's been angels to my rescue along my journey with you, Charles Patrick. My first Earth Angels were your Neena and Poppy when they just happened to stop by our house when I first received that devastating phone call. It still amazes me that they were in the neighborhood at that very minute.
My second Earth Angel was our school nurse. I was having such an emotional day a few days ago. I was sad, but it had just turned into irritability. I am pregnant you know. ;) Then of course, the guilt came along for being irritable. Hehe. Don't laugh at me, baby! So as I was saying, terrible day and our school nurse comes down to my classroom to give me some information about one of my students. I was on planning and as she was talking, a wave of emotions just overcame me and I just busted into tears! She hugged me and hugged me and said, "Oh baby, you're just going through so much, aren't you?"
I couldn't even talk because I was crying so hard. I finally pulled myself together and said, "Thank you for coming down here because I really needed someone right at this very moment. But I have no idea what you just told me."
We laughed and laughed. It was such a relief to just cry on someone's shoulder. I felt renewed. She was an Earth Angel to me because again, someone walked right to my aide right at the necessary moment.
Today I met my third Earth Angel. She is a perinatal nurse and she works with parents with poor prenatal diagnoses. She knows a lot about Trisomy 18. We have talked on the phone, but I'm so excited to finally meet her face to face. We met in Greenville, South Carolina at a bustling, busy Panera Bread Company. I'm sure it was so busy since it was a beautiful Fall day. She is such a nice lady. She gave us a planning notebook that will help us plan for you. Oh my goodness, how did she know that this teacher LOVES a notebook!!!
She told us a lot about what to expect. My biggest question for her was what we should do as far as surgeries after you are born. I go to the doctors offices and they ask, "What do you want for your child?"
Sometimes I just want to say, "I don't know, what do I want for my child? I've never had a baby before, I have NO IDEA what to expect even if this baby was healthy!"
I'm so torn. I want to be ready for the "survival surgeries" as they call them, but at the same time I'm not so sure how I feel about them. They will whisk you away from me as soon as you are born. I can't stand the thought of that. Of course, then I feel selfish. Would I be a neglectful mother if I don't let them whisk you away to that operating room? I don't want you to think that I don't want to try to save you! I do want to save you. I pray multiple times daily that you will be born alive. I need you to be born alive, Charles Patrick. I will do anything for you and if that means allowing the doctors to open your tiny little body up, I will. At the same time, the very thought scares me to death. I really don't know what to do. There is one thing I know. Charles Patrick, I know and love and understand enough about death and life after death to want to enjoy you while you are here. I will accept when its time for you to go.

I would rather you die in my arms than on a surgery table. 

As we talked to our sweet nurse, she gave me the confirmation that Trisomy 18 affects EVERY SINGLE CELL of your body. There are no amount of surgeries that could fix all that may be wrong with you. She mentioned something called comfort care. That means that the care you get will be care that brings you comfort. You will immediately be handed to mommy and we can enjoy you as much as we like. If you have a hard time breathing, they will use blow-by oxygen that will gently blow oxygen by your face to make your breathing a little easier. If you live long enough to get hungry, we will use a feeding tube down your nose as opposed to a surgically inserted feeding tube. If you show that you are able to sustain life, we can then discuss surgeries in our hospital room that will help make your life a little easier. All that she explained sounded exactly like what me and daddy want for you.
She talked to us a little more about how tiny you will be. She said that most T18 babies are only 3 or 4 pounds. Wow! That's so tiny! I just can't wait to see your sweet face.
When we left, I felt so refreshed. I had a planning NOTEBOOK, a purpose, a plan. I just feel so much more informed and I can't wait to get my birth plan on paper. There's still a billion questions, but I have some direction and I feel good about daddy's and my decisions. I promise I will do anything for you, sweet boy. I love you so much! I love every single chromosome, even that little extra one. He can't help that he's caused such a ruckus!
Love,
Mommy

Saturday, October 13, 2012

Mirrors Don't Always Reflect Pretty

October 7, 2010
My sweet Charles Patrick. Twenty-three weeks; only 117 more days until I get to meet you! A dear friend has lent me her heartbeat doppler and its my new favorite toy. I worry about you, so listening to you helps me feel better. I just worry about waiting so long between doctor visits. If something isn't right, I want to know right away since I still don't feel you very regularly.
I know this may be silly, but I count how many beats per minute your little heart beats. I know that 130/140 bpm is pretty good, so I try to count yours. Yesterday I got nervous because during one minute, I only counted 80 beats. In another minute, I only counted 90. I hope  that your hand was in the way or you rolled over or something. Don't scare me sweet boy. Of course, I know I'm not completely accurate by counting. As long as I hear something, I'm relieved.
I also like to listen to you because when I'm real still, you will move and kick me. Its very light, but I feel it. If something is pushing on my belly, you will push back as if you are saying, "Get dat off of me!" I love it, love it, love it!
I had another appointment today at the high-risk doctor. Our ultrasound was first. You are 15 ounces, big boy! You're growing so big and mommy is so proud! The nurse also gave us a 4-D picture of you. It is like a real picture. You look so perfect, I am amazed. You are all mommy has ever dreamed about!
After the ultrasound, the nurse sent us to a little room to wait for the doctor. Its a small room with two chairs, a side table, and a box of tissues. There is a window, but all you can see is the red brick of the next building. Daddy and I were quiet while we waited. I went back and forth between sifting through your ultrasound pictures and staring at the red brick out the window. Daddy finally broke the silence when he started looking at your pictures and joking about how you are all Yeargin.
The doctor came in and I quickly swished your pictures into my purse, so we could listen intently to what he observed from your ultrasound. Mommy has extra fluid in her belly. This can mean a couple of things: #1 maybe nothing, #2 a possibility of preterm labor, or #3 heart failure.
If it is your heart, not only will I have extra fluid in my belly, but there will be extra fluid in you. That's where things can get dangerous. Mommy can develop a "Mirror Syndrome" where everything that is happening to you will happen to me. This really scares your daddy. It scares me a little too, but for some reason I know, I KNOW you won't hurt me.
The doctor says he doesn't need to see me for 6 weeks, but I have to watch for some of these mirror symptoms. It scares me that I won't see him again for 6 weeks. That's too long to wait. The doctor said I can schedule anytime I want to meet my comfort level, but I'm going to try and trust the doctor's suggestion. If he says he doesn't need to see you for 6 weeks, perhaps you look well enough for me to be away from the doctor's office for 6 weeks. Maybe I should be happy about this long stretch. Regardless, the news today was less than good.
I love you sweet boy,
Mommy

Doctors and More Doctors

September 20, 2010
Hello sweet baby boy. I love you. I thought about you a lot today. I had a doctor's appointment with our regular doctor today. We have lots of doctors. There is the high-risk office where we have 3 different doctors. We go there every three weeks to do an ultrasound. They look at your growth and all your organs to see how you are doing. I like going to those doctors because they know so much about you already. They are really nice and I like being able to talk about you. It seems that at our regular office, everyone is quiet around me. Its a little strange. Believe me, I'd rather talk about you straight up instead of everyone dancing around the idea and hiding behind a smile. It makes me feel better to know about you even if they are telling me something bad.
At the regular office, we see a great doctor. He has been my doctor for years and I really like him. There are more doctors in the office that I'm not so sure about. We have to rotate in our appointments and see every doctor in case I go into labor and our doctor is not on duty. Its a routine thing, but I've been warned that some doctors do not think it is suitable to continue the pregnancy of a baby in your condition. Really? Some people think I need to abort my child just because he's not perfect? I bet they are not perfect. It makes me sick to my stomach to think about. I was asked the question several times by doctors and friends. "Are you going to keep the baby?"
Is that a question? Is that really a question? The sad part was it was at my most vulnerable, emotional state, so I think I actually wondered, "Should I keep him?"
I'm sorry I ever thought that, Charles Patrick. I was blind at the time, blinded by my sadness and despair. I'm so thankful that I had the faith to pray. I knew Heavenly Father would get me through this. I actually had the thought that I was doing this all for nothing. I was continuing a pregnancy to have no child in my arms. I'm so grateful that God helped me see that you ARE MY CHILD! I didn't get pregnant with you for nothing. Something great, something big is going to happen because of this. I don't know what it is or even understand it at all, but something grand is bound to happen. I love you. I'm thankful God kept my eyes on the straight and narrow.
Well, as I was saying, we are here to see our regular doctor. Its the first time I've seen him since we found out about you. When he came into the room, he put his hand on my shoulder and said, "So I hear you guys have heard some rough news."
Tears welled up in my eyes because I know he really cares about me AND YOU! I hope you'll be able to meet him sometime. He brought up two very important decisions that he wants me and daddy to think about.
The first one is if I want a C-section. Oh I hope I don't have to do that. I promise I will do whatever it takes to get you here safely, but I really don't want them to have to cut me. Its not that I'm scared, but I've always dreamed about the birthing experience. I've waited so long to get to experience how God intends on new life coming to this Earth. I know it may happen. I'll do it if I have to, but I hope that I can give birth to you.
Secondly, he told us to consider and be aware of what survival surgeries we are willing to do when you are born. I guess it hit home because sometimes I forget you are sick. I'm scared to make those decisions, sweet baby! I'll be strong for you. I know Heavenly Father will make me strong for you. I just want to do what is best.
So needless to say, I was quite emotional. To make myself feel better, I went to Target and registered for lots of goodies for you and your nursery. :) I love getting ready for you. I love you so much.
Love,
Mommy

Thursday, October 11, 2012

God is Real

September 12, 2012
I have to tell you the most amazing thing, Charles Patrick. My last journal entry was about some dreams  I had before we found out you had Trisomy 18. They were frightening dreams. I write this journal entry a few days later because once again I had a dream. I didn't write about it the morning I had the dream because the meaning of it did not manifest itself until today. God is REAL! I can't wait for you to hear this beautiful story, my boy. Believe my every word because I am telling the most honest truth.
I've already mentioned that I have very vivid dreams. Pregnancy enhances those dreams even more. I still remember every detail of this dream as if I just woke up from it. I dreamed that Daddy and my bed were in your room, the nursery. Beside the bed was our bedside table. On the table were a pair of your shoes, a very small pair of blue shoes. I heard something coming from the room so I slowly walked to the bedroom and opened the door. It was raining on the bed, yet no where else in the room was wet. The bed was not getting wet, yet it was raining right upon it. I was so amazed at the sight. I looked at the ceiling and watched the raindrops fall meticulously from the top of the room onto the bed. It was also raining inside your tiny shoes. The shoes were filled with water, yet there was still no wetness anywhere around the shoes. The raindrops fell carefully into the shoes and filled them to the brim without overflowing. I reached my hand out over the bed and allowed the rain to fall into my hand. I stood there speechless at this wonder. I even took two fingers and dipped them into your shoes and marveled at the wetness I felt on my fingertips. How it could rain in our room, in your shoes, yet there was no wetness anywhere else about me was just bewildering.
When I woke from my dream, I honestly felt such a peace. I remembered each detail and thought on it often. I couldn't understand the dream, yet I enjoyed the dream so much. This morning, I woke up early to study my Sunday School lesson. One of the focus scriptures for the lesson was from the Old Testament Hosea 6:3...

"The Lord....shall come unto us as the rain."

You hold hands with the Lord. And I am speechless.
Love,
Mommy

Foreshadowings

September 5, 2010
I love my dreams; they are so vivid. I have all of my senses in my dreams. I can even smell and taste in them. That's just amazing to me. In the beginning of this pregnancy, before I knew anything about you, I had a few dreams. I am amazed and how they have foreshadowed everything that has happened. I didn't write about them before because they were quite scary. I understand them now, so I wanted to share them. 
******
The first dream I had about you was just a quick portion of a dream. I dreamed you and I were swimming in a raging ocean. I have no idea how we got there, but we were being tossed about in the tempest. It was dark and so stormy, it would have even been scary if we were in a boat. Land was no where near in sight. You were in my arms and I was trying frantically to keep you above the surface, but the crashing waves kept beating us down. I knew how to hold my breath and I was dying inside knowing that you could be drowning in my own arms. I woke up in a panic. Your daddy even sat up in bed to see if I was okay. I didn't like that dream at all. 
******
The second dream about you was very different, yet still as disturbing. I dreamed we were at Aunt Summer's house. You were a little older than an infant. We were playing with all sorts of toys. I looked over at you and you were making a weird face as if something was wrong. I ran over to you and you opened your mouth. A small toy was lodged in the back of your throat. I tried terribly to reach in and grab it, but the toy had already passed through your mouth and was so far back in your throat that I couldn't reach it. I watched you gasp and gasp for air, and there was nothing I could do but watch you struggle until the ambulance got there. 
******
Since we've found out about your condition, I've wondered where my mother's instinct is. Why don't I have a feeling about how you are doing? It has driven me a little crazy because I long to just have that feeling that I can look doctors square in the face and say, "WE are going to be fine!" But I haven't had that. Today as I was just sitting and pondering what to write about, I remembered these dreams. How funny and ironic. My dreams were about you. I didn't realize it was you at the time. I know now why I had such terrifying dreams. If you notice, my dreams were about me trying to save you with no avail. My dreams were about the panic and the despair of knowing that you are dying before my eyes. Now I see that I did have some mother's intuition. I've had it all along and I didn't even know it. I know its sad, baby boy. It was sad to write about it too. 
Love  you! Send me some sweet dreams, 
Mommy

Tuesday, October 9, 2012

New Life

September 4, 2010
This weekend was the 50th anniversary our church celebrated in our beautiful church building. Aunt Summer is the Ward Activity Director, so last night daddy and I went to church to celebrate with ice cream, fireworks, and a movie. No one knows about you yet, little boy. I just can't stand the thought of telling one and then retelling and retelling everyone, what a miserable night that would be. It was tough being around everyone knowing my secret and trying to act normal.
Instead of sticking around Gaffney for today's festivities for the anniversary, I took off to the beautiful Columbia, SC Temple. I went by myself. Not exactly sure if I wanted to be alone, yet at the same time I wanted to be alone. I just wanted to be by myself and think.
I cried the majority of the 1 1/2 hour drive to Columbia. I listened to the local Christian radio station and the music was just so touching. It was a beautiful day also, strikingly beautiful. The kind of Fall day that I crave. It has been sweltering hot all Summer long, so a day of cool breezes, a Carolina blue sky, and sunshine like melted butter was just what I needed. It is days like this that I feel closest to Heavenly Father. He knew I needed a day like today. That was part of the reason for my tears too, grateful tears for such a sweet and simple tender mercy to get me through the day.
I got to the temple and quickly changed. I remember the nervousness I felt just a little over a month ago when I came for the first time. I enjoyed the session so much. I got emotional only 2 or 3 times. As it was almost time to enter the Celestial room, I thought I heard a voice that sounded so sweet and so familiar. When I looked, it was President Sanders. When I was in Youth, he was our stake president. A familiar and very loved face. I wanted so badly to just fall into his arms and cry as I was so thankful for a familiar face on a lonely day. Another tender mercy. Heavenly Father is very close today.
The Celestial room is a beautiful room that is exactly as its name, its celestial. It is a place of pondering and praying. Its beauty mimics that of what Heaven MUST be like. I spent a considerable amount of time there. I wanted feelings. I can't help but want a feeling about what is to come. I want to know if you will be born alive. I want to know if you'll be taken early. Not only do I want the feelings as in notions, but I want to feel you also. I am 20 weeks pregnant and I still have yet to feel you move. The doctors say that you have an excessive amount of amniotic fluid around you and that is why I have a hard time feeling your movements. But maybe just a tiny one? Just give me a little nudge and let me know you are still there? I sat there and prayed and waited and prayed for those feelings, but none of them came.
One reassurance did come.
I was blessed to know that you are alive right now. You are alive and this is your life. Live my life as if that is so. 
How beautiful. No more down in the dumps for me. No more, "Should I prepare?" YES! I will prepare. I'm having a baby! I will prepare just as I had planned before all this happened. Its time to get ready for your arrival. I am halfway through this pregnancy, and this second half is going to be a beautiful time. I've never felt so good and so motivated.
I went to the temple bookstore afterwards. I got two things. One is a Willow Tree angel. It is an angel carrying a baby boy because an angel is carrying you right now, sweet one. I also got a book. Just a little over a month ago, when I was here last, I came to the bookstore and was drawn to a certain section of books. I stood there reading the book titles and didn't understand why I felt so compelled to look the books over. The book section was "Children who die as Infants". Today I went back to that same shelf and realized why I was so drawn to those books. It was because of you. You brought me here to the Temple. You brought me to these books. Before I even knew anything about you, you knew me and you knew exactly how to reach me. I bought the book that I had my eye on that day. It is called Angel Children.
The drive home again was emotional. But today was a great day! I'm so thankful for the great love that I felt from Heavenly Father. I know that you are one special little spirit. You are going to touch so many lives. I am proud that God chose me as your mother.
Love you, baby boy,
Mommy

Monday, October 8, 2012

Devil on my Doorstep

August 31, 2010
Today was an emotional day at school. I shared the news with my principal. She just cried with me. I'm so thankful for her love and support. We talked for a long time about things, whether it was related to you, related to school, or just related to nothing. It felt good to just talk. I can't remember the last conversation that didn't involve you. When I got back to class, it was time for math. Yesterday we made a birthday graph, so today we were asking and answering questions about it. One child said, "Your baby's birthday is in February!"
I said, "It sure is."
And another said, "Let's count how many months until your baby is born."
So we counted. Only 6 more months! We all smiled, even me. It made me feel great to still talk about you without tears.
After school, Daddy and I had another appointment with the genetics counselor. Another meeting of dramatic pauses. As she discussed all the ailments you may suffer, I teared up. She stopped talking and said, "Aww." Then she sucked in through her teeth with an "I'm sorry" look on her face. I choked down my tears real quick. I'll cry at home without her onlooking.
She gave us some books to read and she also gave us some trustworthy websites for Trisomy 18. I was glad. I hadn't told anyone, but when I searched online for Trisomy 18 I found lots of websites with pictures of dead babies. I was horrified. I still can't get over the images.
She asked us if we'd like another ultrasound just for peace of mind. Ummm, YES! Of course I can't resist seeing your sweet face. Maybe we'll finally get to see what you are!
The nurse who did your ultrasound on the day of the amnio was named April, like me, and she was very fun and friendly. Today's nurse wasn't as fun. She was very pretty and seemed like she would've been very cheerful. Maybe she was tired or having a bad day. Well, unfortunately, because of that the ultrasound didn't seem as fun. We saw you moving around a little and listened to your heartbeat. We tried to look to see if you're a boy or a girl, but you just won't sit still!
I saw one of your hands and it looked like your fingers were bent over. Maybe your fingers are closing? (Trisomy 18 trait: clenched fists)
A little bummed that we still don't know if you are a boy or a girl, we still left the office happy to be able to see you a kickin' and a playin' in my belly today. As we were heading to the door, I hear dramatic pause lady say, "Ohh, wait, Barnhills!"
We turned around to see what more she wanted to say. She shared, "I'm sorry. The nurse told me you were wanting to know the sex of the baby? The amnio shows an X and a Y, you're having a boy!"
I looked up at daddy and we both smiled. Hello, sweet Charles Patrick.
Your name was already chosen. You are named after your great grandparents: Charles Killion Barnhill and his wife Nora Patrick.
A little bit of reality hit me today. When I got home, I sat on the porch and talked to your Aunt Summer on the phone. I just cried because everything about you is just one big question mark. Do I prepare a nursery for you? Do I allow people to give me showers? I mean there's a huge possibility that you won't live. I'm sure people won't want to buy things for a baby who might never be born. I'd hate for them to waste their money. I guess its not waste. You are not waste, my son, you are NOT WASTE! I hate these questions and these thoughts in my head. I wish they would stop. I wish I could escape my mind at times. As of now, my mind is the worst place to be.
I'm filled with so much fear, baby boy. Fear of so many selfish things. I can feel the devil knocking me down over and over and over again. I have so many hateful and selfish thoughts that run through my head that I hate to even admit them to you. I hate the thought of telling everyone that you are defected. I think about having to take care of you for the rest of your life and having to quit my job to do so. Am I even capable of doing such a thing? I think about what you will look like. Will you have physical defects? How will others react to you? I think about my friends and how they always get their children together for playdates. Will I take you? I mean you will be the child in the wheelchair with the oxygen tank and feeding tube. What will they think? Will their kids be scared of you? I'd just be that mother that wanted her child to experience things, but maybe I should just save everyone else the trouble and stay home. Ugh. I'm so sorry, Charles Patrick. Its not your fault. I'm sorry, these are NOT my feelings, just terrible, terrible thoughts that run through my head. The devil is right here. We are face to face. Its my choice of what I say to him. As the apostle Peter once said, "Get thee behind me, Satan."
I just love you so much, little boy. I just want you to be perfect just like I always imagined. I want you to run and play and skip and get dirty. I can't help that I get so upset over you. I just want you here with me. There's nothing wrong with that. You are one very special spirit, Charles Patrick, but I knew that way before now.
Love,
Mommy

Sunday, October 7, 2012

The Call

August 30, 2010
I was on edge all day today. We were waiting on your test results, and I wasn't very sure when to expect the call. Aunt Summer called around 3:50 and my heart jumped into my belly! At about 4:10, the phone rang again.
I felt the blood run out of my face when she uttered the words, "The test was positive for Trisomy 18."
I ran out of the school building. I didn't even grab my school bag. I sat in the car for a moment and just cried. I hated that I was still at school. I called your daddy at work and all I could say was, "KC?" in my whimpering, tearful voice.
He said, "Oh baby! OK, I'm on my way home."
I didn't even have to talk. He knew. Oh how I love that man! I cried and cried the whole ride home. Its only 3 miles, yet it took an eternity. I couldn't understand. The ultrasound looked so good! I literally ran into the house and into your daddy's arms. He is being so strong for me. He just held me while I cried. All my hopes and dreams for you were being shattered by doctors' opinions. I didn't know what to think. We sat there for a long time until I got okay. Daddy is worried about me and you. The doctors also told us of some risks that could happen to me by carrying you. They scared me a little bit and made me think it was a bad idea to continue this pregnancy. They told me of all the health risks and dangers to my own health. I'm not afraid of you, little one. I know you won't hurt me. I'm going to be just fine. I want you to be just fine, too.
After I pulled myself together, I wanted to go see my own Mom and Dad, your Neena and Poppy. They had just gotten in from grocery shopping. We sat there in the studio and told them the news. They were in disbelief too. Everything looked so wonderful on the ultrasound! Its just unreal, how did this happen? We cried together and talked more about what this meant from here on out: lots of doctors appointments and watching Mommy's health. As we were leaving, we hugged and your daddy went on out to the car. Poppy gave me a tight hug and I could tell he was tearing up. He's always considered me his "little one", the one most tender and fragile. But we're going to be okay. I know it completely! If there is one thing I know, its that we are going to be okay.
Daddy and I spent the evening calling the rest of the family to tell them the news. I'm exhausted. Good night, sweet baby, good night.
Love, Mommy

Getaway

August 29. 2010
Today your daddy and I decided to get away. We skipped church and went to our favorite place in the world, soon to be your favorite place in the world. Clemson, South Carolina. We ate at our favorite pizza place, Peppino's, visited the magestic Death Valley, bought you your first book, and ate Clemson ice cream. I think you enjoyed yourself.
Love, Mommy

Saturday, October 6, 2012

Needing a Feeling

August 26, 2010
Today we got to meet with the genetics counselor. I wasn't sure what to expect or how to feel about it. I really don't like the unknown. Daddy and I woke up bright and early to head to the doctor's office. On the drive there, I kept wishing I would have a feeling about how things would go, but I didn't. Today we would find out if you, in fact, had Trisomy 18. I'm scared. Everyone else seems to think you are a-okay, sweet baby. Even Aunt Summer found on the internet that there are many, many cases where there is a false positive in the blood screens. I don't have a feeling. I want just a tiny feeling, a little inkling of how things are going to fall. All I felt was nothing. I don't like feeling nothing.
Our genetics counselor is very knowledgeable and kind. Sometimes though, as she explains more and more about Trisomy 18, she does these dramatic pauses while she speaks. Maybe she's giving us a moment to react or let it sink in. Yes, the news is devastating, but there's no way I'm breaking down in this office. She's just doing her job, I know. Each time she paused, I was tempted to just say, "Yes, thank you and continue."
Why am I being touchy? I'm sorry, sweet baby. It's not you. I'm just having a hard time with anxiety at the moment and I just want to know right now if you are okay! I can't help being restless.
Well we learned some comforting news. Though my blood work came back as high risk, there is still only a 5% chance of you having Trisomy 18. To test for Trisomy 18, we have 2 options: ultrasound (about 80% accurate) or amniocentesis (100% accurate).
This should be an easy decision. I'm ready to KNOW! But it's not an easy decision. An amniocentesis can sometimes cause a miscarriage. I'd never forgive myself if you died in this process. The counselor ensured us that her doctor had performed thousands of amnios and never once had a mother to miscarry. She left us alone for a few moments to discuss what we wanted to do. Your daddy is too nice to me. He looked at me with tears in his eyes and said, "We'll do whatever you want to do."
I'm so scared. Only being 17 weeks along, you are not adequately developed enough to tell much about your condition through ultrasound, so we opted to do an amnio. Please, baby, please. Please don't let me hurt you. I couldn't bear it.
When our counselor came back, we told her of our decision. She said that we would still do an ultrasound since its such an easy test. The ultrasound was amazing. Everything looked perfect to me! I couldn't stop smiling. I love to look at you, little baby! You are amazing to me in every way.
One physical defect of T18 is clenched fists. We saw your hand and it was open! We also saw your sweet and precious lips that I can't wait to kiss! Another defect is cleft lip and we could certainly see that your lips were beautiful.
We tried to look and see what you are, but you just kept bouncing and jumping all over the place, so I guess we will have to wait on that. You look so healthy. I'm starting to get that feeling that I was wanting. I think everything is going to be okay.
Next was the amnio. To do this, a nurse uses ultrasound to make sure you are away from the area where the doctor is about to stick his needle. The doctor stuck the enormous needle into my belly and drew out some of the amniotic fluid. It wasn't very comfortable, but I'll endure whatever I have to for you, sweetheart.
So today was a good day. I feel really good and positive that everything is going to be okay. On the way home we had to turn around and go back to the doctor. The nurse forgot to give me my shot of rhogam. On top of all of this, I am Rh-negative. I have to have these injections in case our blood mixes. Its quite likely that you have a positive blood type. If your positive type mixes with my negative type, my body will develop antibodies to try and destroy the "intruder" (you) that's in my body. In other words, we zipped the car around in a flash. Now I have a sore belly and a sore booty.
Oh baby, you are something else! What am I going to do with you? But like I said, we feel good. I wanted a feeling and we got it. We will get our results by Monday, August 31. Take care, sweet baby.
Love, Mommy
 
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