I miss you so much. I think about you all the time. I wish I had more time with you. I wish I could have held you more. I wish I could have kissed you more. You were so small and pure and innocent. You made me a mom. I will forever remember you. I will remember the first time I saw you. The moment you were born, your dad and I could not believe our eyes. You were so strong. I was told you tried to cry. Baby, I wish I got to hear you cry. I remember the first time you opened your eyes. I would talk to you and you would look in my direction. I remember changing your first diaper. I loved doing that because it meant I got to hold you through your isolette, even if only for a few minutes. I remember holding your hand. You would grip my finger. I would do anything to do that right now. I remember reading to you and singing to you. Dad and I are so proud of you. You are the strongest kid we know. You fought so hard your whole life. You taught me so much about myself. You taught me empathy and because of you, my faith is renewed. I can’t wait to hold you again, to feel you in my arms. I can’t wait to feel your warmth and to know more about you. We didn’t have enough time together, but I know we’ll have an eternity. I’ll be with you again someday, but until then know that mommy loves you.

Sometimes, it feels like all I’m doing is avoiding the grief. While I am so in love with Evan, as a mother I think I grieve in a different way and it’s especially been hard since we are still on two different wavelengths as to when we want to try again. I haven’t really talked to anyone who’s been through what I just went through. Many people have reached out to me with similar stories of grief, but for whatever reason I haven’t wanted to open up to them.

I ran yesterday for the first time in a long time. I ran alone up a dirt road by our house. When you get to the top of the hill it overlooks Manhattan, KS. It’s really a beautiful picture of God’s creation. I cried through half of the run. I was listening to In Christ Alone by Keith & Kristyn Getty and heard the words:

“No guilt in life, no fear in death
This is the power of Christ in me
From life’s first cry to final breath
Jesus commands my destiny”

And I try to remember this promise. Paxton is healed. My life is in His hands. I know that if/when we have another baby, it will be God’s timing and I know that Evan is grieving too, but I just want to sob with another mom who knows this pain. I want to cry out my selfish desires to her without judgement.

A few of the girlfriends a made here are pregnant. I wasn’t as difficult as I thought it was going to be to spend time with them. Those girls are truly are answers to prayer for me. One is having a baby boy who I’ve felt kick in her precious tummy. We went to breakfast one morning and I shared with her the pictures and videos of Paxton when he was very much alive. She grieved with me. Her tears meant so much to me. Another just found out she’s pregnant, and I rejoiced with her. Genuinely, I am so thrilled she get’s to be a mom. I can’t wait to meet their beautiful babies. But, I’ve also met women who are grieving difficult pregnancies and infant loss. It’s terrible. The amount of women who go through something like this surprised me. I am not alone. I have joined a program called The Finley Project. My support person should be reaching out to me soon and I eagerly look forward to meeting her. I pray that she can be a light to me in the middle of this.

This is a poem written my Chelsea Johnson that is displays on The Finley Project’s page:

I asked God…

What do you do when you lose your baby, a twin, when everything about her reminds you of him?

How is so much pain in this life ever a part of your plan, when you could have stopped it before it ever began?

Do you really believe that I can handle all you have allowed me to walk through, while still fully and faithfully believing and trusting in you?

What happens to me when everyone else has moved on, and I’m left with the brokenness and grief of losing my son?

And He Answered…

My child, I know your heart breaks and the pain seems too much to bear
I heard your desperate pleas to save your child, in that very moment, I was right there
And although it doesn’t seem fair, to lose a life so precious and pure
I must tell you some things, of which you can be sure
Despite what you are enduring, my promises are still true
I know the end from the beginning, so you can fear not, for I am God and I am with you
Don’t try to understand, because my ways are higher than yours, and my plan is without flaw I am God, and you must not forget that it was my son whom I freely gave to redeem you from the law

See you were bought with a price, and it came at a high cost
I know the pain of losing a son, but it was worth the price to save the lost
His life was perfect, but His job was done
And this is the same for this story, this is the same for your son
I work all things together for good, because you love me, and you know that death is not the end

And you can have the peace of knowing that you will see your son again
You are blessed in your mourning, and you will be comforted, so that you may comfort others You have walked an uncommon road and journey, that I have not called for most mothers

As you continue in this life, walk by faith and not by sight
And when I call you home, it is only then that you will fully realize, that everything is indeed alright.

http://www.thefinleyproject.org/

 

 

I walked into what would have been Paxton’s nursery this afternoon. The room used to be filled with Paxton’s things. Even though I wasn’t that far along, we were blessed to already have a crib, a changing table, and other little things. We had books out ready to read to him. We had onesies and blankets. I started buying diapers with every grocery trip. As I sat on the closet floor to put some stuff away, I looked around the room. I was going to bring him home to this room. He was going to be lying on a blanket while I kissed his cheeks. I was going to rock him to sleep in this room. I was going to spend countess hours in this room feeding him, holding him, and loving him. Now, I avoid this room. It’s not like he was ever in here. He never wore these clothes or spit up on these cloths. He didn’t crawl around on this floor or sleep in this room. The blankets don’t smell like him, but I desperately wish they did.

I didn’t expect to get so emotional today. I sat in the closet and cried as I put Paxton’s birth certificate into our important documents. Stamped across the government paper that symbolizes Paxton’s birth, the moment that changed my entire life, are the words INFANT DEATH. Maybe that’s what set me off. I don’t know.

Evan and I were leaving the hospital after Paxton died and I turned to Evan and asked “What do we do? I literally don’t even know what to do. How do we do this? How do I leave?”  I was about to leave my son’s lifeless body to continue living my life. What did I do before this? I remember walking back to the Ronald McDonald House in KC hand in hand with the father of my child thinking the whole time “What do we do?”.

We had only slept a few hours the night before, so we tried to sleep. Both of us were in so much physical pain that it made sleeping impossible. My head was going to burst, my eyes were burning, and I kept thinking about Paxton’s blue body. The image wouldn’t leave my mind. I knew that Paxton was free of that horrid body and I tried to remember that truth. God promised to deliver us and He did. Actually, He’s still delivering us. One day, I know that our suffering will end. I imagine that our suffering won’t end until we unite with Paxton in heaven. That’s the reality of living apart from God.

How does one go through something like this and not rely on the promises of our heavenly Father? The pain is unbearable without God’s word. To know that I will one day be able to hold my sweet boy is the only thing that comforts me.

My soul is bereft of peace; I have forgotten what happiness is; so I say, “My endurance has perished; so has my hope from the Lord.” …My soul continually remembers it and is bowed down within me. But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. “The Lord is my portion,” says my soul, “therefore I will hope in him.”                                                                                               –Lamentations 3:17-18, 20-24

I’m terrified of the future. The unknown of what lies before me is intimidating. The possibilities are endless. What if I have a difficult time getting pregnant again? What if I have multiple miscarriages? And the most frightening thought of them all, what if I get pregnant again and we end up back in the NICU? These thoughts consume me every single day. They’re lies. I know they are. God’s truth tells me that He is in control. He knows what lies ahead. “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself” Matthew 6:34. That should comfort me, right? Well, right now it doesn’t.

Right now, I want Paxton. I want my baby. And since he’s gone, I want to try again, but these thoughts crowd my mind. This probably scared Evan. I bring it up all the time. “When do you wanna try again? How many healthy periods should I have before we start trying again?” I poke and I prod, but I know for my mental health I must be patient. That is not a great quality that I have, patience. I need to work on that.

Evan reminds me that he’s set to deploy this time next year. Obviously, he wants to be here for the birth of our next child. Yet, I’m impatient. I think, I’ll have a couple healthy periods and then by January or February I should ready to start trying again. The reality is, if we are able to get pregnant by February and if I carry to term (Will I be able to carry to term?), then Evan will be gone and will miss the birth. How can I be okay with this? How could I be so selfish that I would even consider that Evan missing the birth of our next child would be fine? Especially after what we just endured. But, I don’t want to wait until he gets back. That could be 2 years from now. Two years! I’m a monster.

So, I bury myself in Gilmore Girls. Stars Hollow is my escape. It’s not very healthy of me, to binge a TV show I’ve already watched through numerous times. I should be reading or exercising or socializing. Oh well. I’ll do that later. For now, I get to escape from my thoughts for a little. Thank you, Lorelai.

“Search me, O God, and know my heart! Try me and know my thoughts!” Psalm 139:23

Paxton lived for 54 days. Just after he was born, the medical staff was astounded by the progress he was making. There were a few setbacks here and there, but Paxton was beating all the odds. Evan and I started talking about when we would bring him home, instead of if we would bring him home.

A few weeks before Paxton passed away he developed an infection. The infection proved to be detrimental to Paxton’s health as his ventilator was fixed at high settings and his PDA reopened. He would need surgery to close it. We were transferred to Overland Park, KS. There, they did a slew of tests and basically worked Paxton up from head to toe. They ended up finding numerous blood clots, a massive one extending the entire length of his aorta into his left iliac artery as well as scattered ones throughout his liver and spleen. The PDA surgery would be postponed for now, until the clots were under control. The neonatologist at Overland Park seemed optimistic, but honestly told us that this is a very critical situation. We were transferred to Children’s Mercy where there were specialists who were better equipped for this kind of thing. Paxton died less than 48 hours later.

Paxton declined rapidly. His ventilator was maxed out at the highest possible settings. There was nowhere to go. It got to the point that almost every time anyone would touch him, he would desat and turn blue. Evan and I prayed and prayed and it was clear that Paxton was suffering. We decided it was time.

A local pastor came and baptized our baby boy. Evan and I were in so much pain, emotionally and physically. We cried so hard and for so long, our bodies actually hurt. Our heads were throbbing and Evan cried so hard he burst blood vessels in his shoulders. The pain of watching our son die was excruciating.

The nurses handed Paxton to Evan while he was still intubated so he would live long enough for each of us to hold him. Evan held Paxton on his chest for a few minutes, but Paxton was so blue I was worried he would pass before I would get to hold him. Finally, Paxton was on my chest, skin to skin. I held him for a couple minutes before they took the tube out. When they extubated Paxton, it was the first and only time I held him without any lines. He moved slowly in my arms as I cradled him against my bare chest. I kissed him over and over again, I was only able to kiss him twice before this.

His heart beat for almost 20 minutes after the tube was removed. For a minute, I could feel him struggle as he took his last breaths. The doctor came in and listened to pronounce his passing. Evan and I prayed, we kissed him, and left to get some air.

When we came back, Paxton was swaddled in his hospital bed. He looked so peaceful and it was the first time I saw his face without any tubes in the way. He was so beautiful. I kissed his forehead again before we said our final goodbye to his earthly body. We cannot wait to see Paxton again in heaven, with his perfect heavenly body free from pain or suffering. I long to hold him again.

Paxton died a little over a month ago. The pain is still fresh and I imagine that it will always hurt in some way or another. I think about Paxton every minute of every day and what my life would be like if he were still here. I think about what it would be like to still have him in my belly. He wasn’t due for over another month still. I think about him kicking around in there and talking to him. I think about what he would look like as a healthy baby. I imagine what it would be like to hear his cry, I’ve never got to hear it. It has changed my life forever.

I am different because of Paxton. My faith has grown and matured. My marriage is strengthened. I feel a closeness to God that I never would have felt before and Evan has become my rock in all of this. Let me tell you something, ladies. Get yourself an Evan.

Because of Paxton, I will be a better mom one day. My heart longs to be a mom again and God knows that. As difficult as it is for this momma to let go of control, I am learning.

“Now is my soul troubled. And what shall I say? ‘Father, save me from this hour’? But for this purpose I have come to this hour. Father, glorify your name.” Then a voice came from heaven: “I have glorified it, and I will glorify it again.” –John 12:27-28

 

I am not a writer. Starting a blog actually kinda gives me anxiety. It’s not because the content is so personal and raw, but because I don’t want you judging my lack of writing ability. Yet, here I am.

I guess I’ll start off with a quote from Robert J. Morgan who wrote The Red Sea Rules, a book that Evan and I desperately clung to after our son was born nearly 4 months early.

“God allows our faith to be tried, and He permits troubles to crowd into our lives. Sometimes they seem more than we can bear, but Christ can bear them. The first step toward ‘parted waters’ is to frequently remind ourselves that the Lord has either put us in this difficult place or has allowed us to be there for reasons perhaps only He knows.”

Our beautiful son was born on June 22, 2017 at 9:40 am, 122 days before his due date. Paxton Keith Spence was born at 22 weeks and 5 days gestation, weighing in at a whopping 1lb 6oz and measuring 12 ½ inches in length. He is the most beautiful thing we have ever seen, truly a miracle.

The morning of June 20^th is extremely hard to reflect on. This is a fair warning that I’m gonna be real here. I woke up at 3:00 am. I thought I wet myself, so I went to the bathroom to clean up. I noticed almost immediately that it was dark. I switched the lights on and it was blood. A massive amount of blood. I yelled for Evan, hysterical. The next 20 minutes were filled with sobbing as we got ready to go to the ER. It was supposed to be my first day at my new job, but I was headed to the hospital for a very different reason.

Evan and I experienced a whirlwind of emotions. Waking up, we believed our son was gone. When we got to the hospital, they found his heartbeat and it was strong. We soon realized that we could lose Paxton at any moment. The doctors and nurses told us we needed to keep Paxton in there until at least 23 weeks. Twenty three weeks was viability. Any earlier than that and they would not attempt to resuscitate our baby boy.

On Wednesday evening (June 21^st), I started to have excruciating back pain. It was rhythmic, every 5 to 10 minutes. No one thought it was contractions. I didn’t sleep a wink that night. In the morning, my OB assessed me and I was already 4 cm dilated and 100% effaced. Paxton was not waiting until Saturday. We begged for the neonatologist to assess Paxton when he was born to see if he was big enough to intubate. Paxton came. He was so strong. He looked like he was trying to cry. That itself is a miracle for a 22 week 5 day gestation baby. His skin was more mature than expected and Paxton was stabilized. I got to see my beautiful baby boy live that day. It was the best day of my life.