I am #1in40000

Many of you have read my blogs about Chisum’s birth story and having an Amniotic Fluid Embolism (AFE), but here are the links to the story in four parts: {Part 1} Patience, {Part 2} Strength & Miracles, {Part 3} Meeting Chisum and {Part 4} NICU & Healing.

I’m sharing this because today is AFE Awareness Day. 

It is estimated that an amniotic fluid embolism (AFE) occurs 1 in 40,000 births.  At least 40% percent of mothers and/or their babies will not survive. Of those that survive, many will suffer lifelong physical and emotional complications.

The AFE Foundation was founded in 2008 to support the unique needs of families affected or devastated by AFE, with the primary goal to spur clinical research into this poorly understood birth complication.

Prior to the establishment of the AFE Foundation, there was nowhere for families to turn for information or support. Similarly, there was limited information for clinicians. The decision to start the foundation was an easy one; the need was too great. Just weeks after its formation, families sought the support groups we created and the world’s top AFE experts joined their board. Months later, their website offered timely and accurate information and helpful guides to assist families through the challenging times after an AFE. Years later, research has begun, over 200 families have received direct support, and thousands of clinicians have benefited from their educational activities.

The AFE Foundation and survivors celebrate these accomplishments but know there is still a great deal more to be done.

How can you help? Know and share the facts!

Facts about AFE:

• is unpreventable and there is no cure
• is estimated to occur 1 in 40,000 births
• 40% of mothers will not survive
• affects women of any ethnicity and age and is independent of birth order or delivery method

Facts about the AFE Foundation:

• is a 501(c)(3) organization founded in 2008 by an AFE survivor
• is the ONLY organization in the world supporting families affected by AFE
• has the ONLY active patient registry in the world

Follow the AFE Foundation on Social Media:

• Facebook
• Pinterest
• Twitter: #1in40000 or #AFEawareness
• YouTube
• Instagram: @afefoundation

Change your Social Media Profile and Cover Photos

• Click here to change your profile and cover photos to the AFE Awareness logo and banner.
• Post photos of you in your shirt on social media.

Fund our Mission

• Make a donation or ask friends and family to make a tribute gift in you or your loved one’s name.
• Create your own Personal Fundraising Page for AFE Awareness.
• Sign up and designate the AFE Foundation with Amazon Smile

Thanks for supporting me and this opportunity to help others like me. :)

Grateful mom and blood recipient

Blood donation saves lives. I know.

I’ve been working with the Nebraska Community Blood Bank and Memorial Blood Center to share my story as a blood recipient when Chisum was born. They did an excellent job recapping my story and really sharing why I’m so grateful for blood donors. Please take a minute to read the story: Kelsey Pope, Grateful mom and blood recipient.

Many of you have read my blogs about Chisum’s birth story and having an Amniotic Fluid Embolism (AFE), but here are the links to the story in four parts: {Part 1} Patience, {Part 2} Strength & Miracles, {Part 3} Meeting Chisum and {Part 4} NICU & Healing.

I haven’t told this part of the story yet, though.

Last fall, I was so excited to donate blood again but had to wait until 1 year after Chisum was born. I went into the Nebraska Community Blood Bank the day after Chisum’s first birthday – September 10, 2014. I am alive today because of blood donation and I wanted to start giving back as soon as I could. Before I was pregnant with Chisum, I made blood donation a regular time in my calendar and went as often as I could.

The gals at the NCBB were so friendly and were so excited for me to be giving back to help others after hearing my AFE story. I left the center that day with a refreshed gratitude and praise to God who gave be the ability to be there.

About 10 days later, I received a letter in the mail from the Memorial Blood Center – who partners with NCBB – that my blood tested positive for an anti-Kell antibody and I would no longer be able to donate blood.

My first thought: what is an anti-Kell antibody?

My second thought: surely they just mean I can’t donate for a period of time.

So I called the director at MBC and she explained to me that no, I can never donate again. An anti-Kell antibody means I have an extra antigen in my blood, most likely caused from when my immune system was shocked and shut down with the AFE, then rebooted when I received the blood transfusions (technical info on Kell here). This extra antigen acted as a super protein to fight infection and will stay with me in my blood forever to fight off anything foreign.

It won’t harm me to have it, but it could be an issue if I ever have to have another blood transfusion, or if we decide to have another baby. And my blood could be harmful to others, which is why I cannot donate again.

I got off the phone with the director and felt like a load of bricks knocked me over. Here I was, perfectly healthy (only sleep deprived & exhausted from having a one-year-old boy!), and I wasn’t able to give blood again – something I’ve always been very eager to do and fit into my schedule like clockwork every 6-8 weeks.

I realize that I am so fortunate to be healthy and thriving after all that I went through, but it just hit me hard that here I am, one year after my AFE, thinking that I was all well and ok. But my body isn’t the same. I benefited from blood donors, but never again could I help anyone.

Not to mention that there are so many unknowns about being able to have another baby. Those tears came later when I talked to Ronny about it. But God gave me a peace about this. While many of my friends are going on to have their second or third child, I’m totally at peace with where our family is – even if that means only a family of three. We will see where God takes us in the future.

So there are still so many unknowns and I will be finding a fetal maternal specialist soon to talk about these future issues. But for now, I’m taking comfort in the fact that I can still help with blood donation and be a volunteer to get others to donate, even though I cannot.

Tomorrow is AFE Awareness Day and I’ll have more on my blog about it, but I want to stress today the importance of donating blood. It saved my life and your donation can save someone else’s life.

Please find a location to donate today at:

Nebraska Community Blood Bank

Red Cross Blood Donation

Chisum–12 months

Wow, what a fast year! Yet it was so fun, full of challenges and joy at the same time. We had so much fun celebrating at your big party.

On September 8 of this year, one day before Chisum’s birthday, I felt anxious remembering what we were about to step into, one year prior. I was really worried about how I would feel/react on Chisum’s birthday. My heart would race every time I thought about it, but I laid it on God and he gave me peace all day. Not once was I emotional or overcome with anxiety. I could truly enjoy the day focusing on my beautiful baby boy who was one year old!

Chisum, you have grown into such an amazing little boy – no more baby in this household!
 

You are super independent. You dad always gives me a look from the corner of his eye and says, “I wonder where he gets that from!” Hey – it’s good to be independent! ;) You don’t want me to hold your hand when you walk and you want to run everywhere.
 

You’re really into food – and feeding yourself of course. Our neighbor, Jean, brought you your own birthday cake and  you devoured it. You eat pretty much everything we do, but you especially love your peas, cottage cheese, any type of hamburger or meat casserole and bananas. And cake, of course.

You also like walking around the house eating “O’s” – or feeding Hank, whichever makes you laugh more. Hank follows you around when you get your snack cup and picks up what you drop or eats whatever you hand him. You two have become buds. Or maybe he is just tolerating you pulling on his ears and hair knowing that you’ll feed him snacks.
   

We got to visit Auntie Em in Olathe. You really liked her playground!

 

On our way home, we stopped to visit Baby John and Melissa & Todd!

You went to your first rodeo! {River City Rodeo in Omaha}. You liked pointing at all of the horses.
   

And we got to see Lori and Piqua!

Also while at the River City Rodeo, you got to be in your first parade. You waved from inside the truck while dad drove and mom walked. You’ve really started mastering your wave! Because the next weekend at the Limon Homecoming parade, you waved the whole time.

Your best friend these days is your paci. I don’t know why it is, but you are really good at throwing a downright fit when you don’t get your paci when you want it. I have to admit you’re pretty darn cute when you pout. I try not to laugh. :)

   

I do get good cuddles from you after your little fit which I’ll take any day.

You are all ready for fall with your pumpkin jammies. And when you have a book, you are the happiest baby ever. Especially if it has animals. You have your moo, woof and baa down!

   

We love you, sweet, sweet boy.
 

Even when you are hanging on your mama because she has your paci!

Chisum’s Story {Part 4} The NICU & Healing

Read {Part 1} Patience
Read {Part 2} Strength & Miracles
Read {Part 3} Meeting Chisum

Chisum spent five days in the NICU. Each day we were there, the doctors said they wanted to keep him another day to observe him and run some more tests. This was unnerving and scary at the same time. What were they concerned about? What tests would they need to run? Was he going to be healthy?

So many questions rolled through my mind, but I was still in shock from Monday’s event that I wasn’t sure how to communicate these to the doctors as they whisked in and out. Thankfully, Ronny was there to step in and get more details from them. And the nurses were incredible to answer everything. I really felt like I was in a fog that week. Each day I felt better than the first – but looking back now, I was so weak and frail then. I was putting up a huge front.

Unfortunately, that is one of my weaknesses. I don’t accept help from others very easily and I try to act stronger than I really am. I needed so much help during those days. And Ronny, my parents and Ronny’s parents were my rock during that week.

The other people that were on our side were the NICU nurses. The Lord blessed these ladies with special gifts to not only take care of sick, little people, but also to comfort nervous, scared and hard-to-admit, weak parents.

The concerns the doctors had for Chisum were the unknowns from the tragic birth. They were specifically concerned with any blood infection, issues with his kidneys and liver, and most importantly – if he had any brain injuries. Test-after-test, we held our breath and prayed like never before. And God answered our prayers. Despite the odds, Chisum passed every test. When our Pastor came to visit on Wednesday, the nurse came in while he was there to give Chisum his hearing test. The testing machine she used wasn’t working properly at first. I kept thinking, “Lord, you brought Pastor Curt here at this time to be with us when we find out Chisum is deaf!”. I know Pastor Curt, Ronny and I were all praying during those few minutes and when the nurse said, “Oh, the machine just wasn’t working. He passed the test fine.”, we all could breathe again.

The power of prayer is simply incredible. During the quick events on Monday, there wasn’t time to ask anyone for prayers. But in those five days in the NICU, we felt overwhelmed with the peace that God gave us – and we know that is because so many of our family, friends, friends-of-friends and complete strangers were praying for us. Your prayers were felt and we thank you so much for them.

Looking back, I’m grateful for our NICU experience. Being first-time parents, we had no clue what we were doing despite the classes we took and books we read. We had a nurse in our room or right outside the hall 24/7. We received one-on-one help caring for Chisum, learning to take his temperature, what the monitors were doing and what the beeping meant, and how to feed him. I don’t doubt we wouldn’t have been taken care of on the post-partum floor, but the particular care and concern of the NICU nurses put Ronny and I at ease.

The struggle with this though, was being on different floors and having to take care of myself, along with our baby. As soon as I was done feeding Chisum, I’d have to go back up to the fifth floor to get my blood draw, vitals taken and pain meds. I’d have about 30 minutes for some rest before getting a call from the NICU nurse that Chisum was hungry. Down I’d go again, and then I’d have to go back up. It left little time for cuddling and bonding with my new little one!

I got discharged from my floor on Thursday afternoon. We were hopeful that Chisum might be as well – but they wanted to do an MRI on his brain that got moved to Thursday afternoon, which meant keeping him one more night for observation. Whatever it took to mean that our baby was ok and healthy was fine by me. So Ronny and I spent our first night as a family of three in the NICU room. I actually got more sleep there than in my room on the fifth floor. I believe the peace my heart felt had something to do with that.

Chisum was discharged the following afternoon after hearing that all of the tests were fine. Praise the Lord! We were so excited to get to come home and have a chance to heal.

How abundant are the good things that you have stored up for those who fear you, that you bestow in the sight of all, on those who take refuge in you. {Psalm 31:19}

Through all of our experiences, God provided for us. I really believe that He put us through this for a reason. And while that reason was not apparent at the time, we’ve been able to share our story many times – even in front of over 400 people at our church – to show that God’s providence is Sovereign and that only through Him can we expect miracles. If our story can change one person’s heart, then it was all worth it.

God taught Ronny and I so much during that week – and in the weeks since. He is our Provider and Sustainer. We were so weak, yet we sought Him and took refuge in Him and he provided for us. We have a healthy, miracle baby because God provided. Not because science said we proved the odds.

Only by of the Grace of God. Amen.

Chisum’s Story {Part 3} Meeting Chisum

Read {Part 1} Patience
Read {Part 2} Strength & Miracles

First, I just want to thank you all for your outpouring of love and support after sharing the meat of our story in Part 2. There were so many prayer-warriors out there that we have yet to thank, but know that those prayers were felt and that we could not have gotten through that day, or the 11 weeks since, without God’s Grace!

After the traumatic day of Chisum’s birth, I spent a majority of the next day in the ICU recovering. It was hard to sleep that night as the events of the day kept spiraling through my mind. And that the nurse kept coming in every two hours to administer pain meds – but I wasn’t complaining about getting those. They also checked my blood every couple of hours and I received two more units of blood that morning. They brought in breakfast (which I thought was marvelous – I felt famished from not eating anything the day before), and I talked to the doctors about my progress. They were confident that I’d be discharged from the ICU that day, but it all depended on my blood levels.

Besides my parents and Ronny’s parents being at the hospital with us, Ryan, Lindsay and Maelle (my brother, sister-in-law and niece) were able to come visit and that truly was such a gift that they dropped everything to come. Through all of the memories I have of being in the ICU, one of the high points was Lindsay combing through my hair and putting it in a ponytail. This was such a small thing, but my hair kept sticking in the tape of my artery valve on my neck and I had so many IV lines in both my hands that I couldn’t do it myself. I also couldn’t turn my head because of the art-valve. I have to give props to Ronny though for trying to put my hair up earlier in the day!

I FaceTimed again that morning with Chisum from the NICU and he seemed so alert – it was killing me not to be able to hold him. Finally, around 4 pm, I was discharged from the ICU and taking to the post-partum floor in the Women’s and Children’s wing of the hospital. Two floors away from my sweet baby in the NICU. When I arrived in my room, I told my nurse I would not be staying long, I needed to get to the NICU. She had to go through the rounds with me, then – despite being totally exhausted and shaking from being so cold – I got loaded up in a wheelchair and she took me to the 3^rd floor NICU.

Ronny was already there and was feeding Chisum when I rolled in the room. It was such a beautiful sight to see them together. He finished up, then the nurse graciously handed Chisum over to me.


My first look of him was just being in awe of his perfection. But this was not what I had planned. I had planned to hold Chisum right after he was born, look into his eyes and never let go. I had wanted so bad to bond with him from the start and be able to introduce him to my family as they walked in the room to meet him. I had dreamt about being able to breastfeed and provide for him. I didn’t get to experience any of that.
But my plans were not what God had planned. God put us through this for a reason. Even if that reason wasn’t apparent to us then, I know now that God’s provision for us is greater than we’ll ever know. If He put us through this to change just one life, then it was all worth it.

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” {Jeremiah 29:11}


So, when the nurse handed Chisum to me for the first time, I created those “first” moments in my mind to cherish. We had just been through a whirlwind of events, literally to almost-death and back, and I finally got to meet my healthy, perfect son. But it also felt like we were just trying to survive – just trying to get through the chaos that was running constantly through my mind. I listened to the words the nurses were saying about feeding schedules, along with my nurse and doctor checkups up on the 5^th floor, but it was all a blur.

All I wanted to do was bond with my baby. But I didn’t feel like I got that experience. We had so much making up to do from birth until the time that I got to be with him. And I really struggled with that. At the hospital and for at least two weeks after we came home, I really grieved with the fact that I missed so many of his firsts in the hospital. I didn’t get to change his first diaper. I didn’t get to feed him for the first time. I didn’t get to help give his first bath. I didn’t get to be there when they created the ink prints with his hand and foot prints.

Ronny was there for these firsts, though. This was truly a gift that he could be a part of these, and I don’t resent that at all. It was just really hard to wrap my mind around trying to just sit back and enjoy my new son with all of the madness surrounding us in the hospital and just running on survival mode.
But it got better. The feeding got easier, the sleeping/napping got easier and I finally felt like I could enjoy motherhood and not be completely scared to death of it.

And God’s providence didn’t end with this. Right after Chisum’s traumatic birth, the doctors weren’t confident that he wouldn’t have some form of brain damage or organ/blood issues. But test after test, Chisum proved all odds of having issues and was perfectly healthy. They kept him in the NICU for five days to be sure that all tests came back ok – and they did. Thanks to God’s plan and the power of prayer – we have a perfect son.

Meeting Chisum was the best moment of my life and we are so blessed that every day since has been a glorious gift from God.

Children are a gift from God; they are His reward. {Psalm 127:3}


Read the Final Part in Chisum's story: {Part 4} Life in the NICU & Healing.