That’s right, it’s negative. I got a negative pregnancy test for Mother’s Day.
It was our first month trying to conceive since we lost Lucy and I was surprised at how devastated I was. It felt like a slap in the face because I “should” be about 8 months pregnant, but instead I’m crying over a negative pregnancy test. Mother’s Day is hard for me now. Motherhood used to be my most treasured role in life, but now it will always be tainted with death and grief for me because I am a mother without my child. That ache can never fully be soothed, no matter how many living children I have or how many years have passed. A Mommy without her baby is a Mommy with an everlasting wound. Today is my first Mother’s Day without my baby Lucy and my wound is so fresh. It is a searing pain.
Today I am praying for all of the women who have lost their babies, and especially for the women who have lost babies and have no living children. I am also praying for the women struggling with infertility. Did you know that some women NEVER see two pink lines on that test? Do you know how absolutely frustrating it is for those women to try and try and see all the women around them having babies so easily while they long for just one? Through my loss I have been introduced to a totally different side of motherhood. I am now aware of the many, many things I took for granted. I took for granted the fact that I was able to get pregnant so easily. I always just assumed that when I got pregnant it meant I would get a baby. It doesn’t. In my first two pregnancies I bought maternity clothes, picked out names, dreamed about what my babies would look like, decorated their room, bought the baby clothes, complained about how horrible pregnancy was, how hard breastfeeding was, how difficult Liam’s colic was. I had no idea what blessings I was overlooking. I never realized how amazingly blessed I was to even get those two pink lines in the first place. I was SO BLESSED to vomit for four months while my healthy baby grew inside me, SO BLESSED to be able to pick out a baby name and actually get to use it. I was SO BLESSED to make it past the second trimester, to go through labor knowing I would get a live baby at the end of it. When I had trouble breastfeeding I never realized HOW BLESSED I was to actually have a baby to feed with the milk that filled my breasts. When I complained about not getting enough sleep HOW BLESSED I was to have a baby to keep me up at night. I had no idea. Now I do, and I will not take any of it for granted from now on. Thank you, my Lucy girl, for teaching me so many beautiful things about life. HOW BLESSED I am to have my Lucy waiting for me in heaven. How much sweeter is heaven now that Lucy is there?
To all the mothers who have their babies with them, cherish every moment and thank God for your many blessings. To all the mothers who have lost children and to the mothers at heart who are still waiting for their babies, know that I am praying for you today and weeping with you on this Mother’s Day. Our tears will not fall in vain. They are precious to the One who made us.
Psalm 56:8 You have kept count of my tossings; put my tears in your bottle. Are they not in your book?
Psalm 126:5,6 Those who sow in tears will reap with songs of joy. He who goes out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with him.
And now I would like to take a little bit of my own advice and remember the blessings that have been lavished on me. My two blond boys that I prayed so long for. They are so wonderful. Do you know how many prayers I said, begging God to let me be a Mommy one day? To give me a boy and then to give that boy a little brother? I think I remember my first prayer asking God to give me my own baby. I was about 5 or 6. It has been my lifelong dream. He has answered my prayers with my Liam Joshua, my Asher Caleb and my Lucy Dair, who I will know one day. He is a good God who loves to give His children good things. I am so thankful He let me be a Mommy like I asked (begged!) I cherish my children so much.
And can I just brag about my two boys? I’m sorry if this is annoying and I give you full permission to stop reading now, because I am going to brag about my sons. Liam has the most amazing/ridiculous brain. I thought I was well prepared for motherhood after helping my Mom with my little sisters and brother and getting my degree in early childhood and elementary education. Nothing could have prepared me for my Liam. Since he is my first child I have asked my Mom for advice many times regarding Liam and she usually says, “I don’t really know. I’ve never seen a child like him.” And she raised 5 (not so easy to raise) children. He is extremely emotional, in love with danger, totally unpredictable and he would rather eat broccoli than ice cream. He started reading when he was two and a half (without much help from anyone besides PBS kids.) He started reading before he was even potty trained. Once when he was one I gave him some pretzels and noticed he wasn’t eating them, he was biting them and breaking off pieces so they formed letters. Liam says the most wonderful things. Here are some of my favorites-
TWO YEAR OLD LIAM:
“Daddy, Daddy, I found a nose under my eyes! And there’s a back under my neck!”
Me: Liam, I got you some Halloween cookies! Are you excited?
Liam: Umm….how about some fruits and vegetables? Fruit starts with the letter F.
“Mommy, when is it my turn to drive the knife?” (As I’m cutting apples.)
“Daddy, is your name ‘Daddy’ or ‘Babe’?”
He was so obsessed with letters that he imagined the world as a book. When someone was in his way he would say, “Excuse me, that’s my page. Move.”
THREE YEAR OLD LIAM:
“Mommy, squares are called tiles and rectangles are called bricks, but what are circles called?”
“Mommy, I just can’t sleep because I need to poop and I need you to spell a word and I need to think about it.”
“Why isn’t ‘new’ spelled N-O-O since O-O makes the ooh sound?”
“Mommy, where is the S-H in lotion?”
“Hey Dad, what are those pictures called that float in the air while I sleep?” (dreams)
“Mommy, what’s an artichoke? Is it something you have to do at the doctor?”
“Mall is spelled M-A-L-L, but Molly in my class is spelled M-O-L-L-Y, so mall should be spelled M-O-L-L.”
FOUR YEAR OLD LIAM:
Liam: Mommy, come play trains with me.
Me: Not right now, I’m spending time with Jesus.
Liam: Ok, tell Jesus he can come too.
“I just can’t wait to grow up so I can be a taxi driver.”
“Mommy, for dinner can we have that dog food that people eat that looks like a popsicle?” (corn dog)
Me (as Asher is screaming hysterically): Liam, what did you do to your brother?
Liam: Nothing, Mom. I just broke his heart.
Long before I met Josh I dreamed about my son. He was standing on a curb and the sun was hitting his beautiful white blond hair. His hair was so curly and his name was Liam and I begged God to let it be. Here I am now, with my Liam Joshua, who I love with all of my heart. I treasure every day I get with him.
Liam drinking his first cup of coffee (mostly half and half)
After Liam was born we begged God to give him a brother. I prayed that this baby would be big and chunky and would love to eat and would not have colic. I told God that while He was making a colic-free baby for me, maybe He could just go ahead and make him a happy, easy baby as well. When I was pregnant with Asher we didn’t know what to name him, so we asked God to help us find the perfect name. God helped me find “Asher” which means happy and blessed. We loved it, but kept it a secret until he was born. We didn’t tell anybody, but one day while I was still pregnant my Mom said, “I just have to ask, is his name Asher? God told me his name is going to be Asher.” I couldn’t believe it. Sure enough, Asher weighed three pounds more at birth (even born at the exact same gestation) than his brother- 10 pounds 2 ounces. He is the most happy, easy baby. He lives up to his name. He will give me a kiss whenever I ask, no matter what he is in the middle of. He will stop his monster truck race, his train rescue mission, his task of complete house destruction to come kiss his Mommy. He says the sweetest things like, “Mommy booful hair!” and “Asher love, love, love Mommy.” He smells mostly like a toddler, with just a hint of that sweet baby smell still lingering. I love him so much. I’m so glad I have my boys and that they have each other.
That’s right, it’s negative. I got a negative pregnancy test for Mother’s Day.
It was our first month trying to conceive since we lost Lucy and I was surprised at how devastated I was. It felt like a slap in the face because I “should” be about 8 months pregnant, but instead I’m crying over a negative pregnancy test. Mother’s Day is hard for me now. Motherhood used to be my most treasured role in life, but now it will always be tainted with death and grief for me because I am a mother without my child. That ache can never fully be soothed, no matter how many living children I have or how many years have passed. A Mommy without her baby is a Mommy with an everlasting wound. Today is my first Mother’s Day without my baby Lucy and my wound is so fresh. It is a searing pain.
Today I am praying for all of the women who have lost their babies, and especially for the women who have lost babies and have no living children. I am also praying for the women struggling with infertility. Did you know that some women NEVER see two pink lines on that test? Do you know how absolutely frustrating it is for those women to try and try and see all the women around them having babies so easily while they long for just one? Through my loss I have been introduced to a totally different side of motherhood. I am now aware of the many, many things I took for granted. I took for granted the fact that I was able to get pregnant so easily. I always just assumed that when I got pregnant it meant I would get a baby. It doesn’t. In my first two pregnancies I bought maternity clothes, picked out names, dreamed about what my babies would look like, decorated their room, bought the baby clothes, complained about how horrible pregnancy was, how hard breastfeeding was, how difficult Liam’s colic was. I had no idea what blessings I was overlooking. I never realized how amazingly blessed I was to even get those two pink lines in the first place. I was SO BLESSED to vomit for four months while my healthy baby grew inside me, SO BLESSED to be able to pick out a baby name and actually get to use it. I was SO BLESSED to make it past the second trimester, to go through labor knowing I would get a live baby at the end of it. When I had trouble breastfeeding I never realized HOW BLESSED I was to actually have a baby to feed with the milk that filled my breasts. When I complained about not getting enough sleep HOW BLESSED I was to have a baby to keep me up at night. I had no idea. Now I do, and I will not take any of it for granted from now on. Thank you, my Lucy girl, for teaching me so many beautiful things about life. HOW BLESSED I am to have my Lucy waiting for me in heaven. How much sweeter is heaven now that Lucy is there?
To all the mothers who have their babies with them, cherish every moment and thank God for your many blessings. To all the mothers who have lost children and to the mothers at heart who are still waiting for their babies, know that I am praying for you today and weeping with you on this Mother’s Day. Our tears will not fall in vain. They are precious to the One who made us.
Psalm 56:8 You have kept count of my tossings; put my tears in your bottle. Are they not in your book?
Psalm 126:5,6 Those who sow in tears will reap with songs of joy. He who goes out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with him.
And now I would like to take a little bit of my own advice and remember the blessings that have been lavished on me. My two blond boys that I prayed so long for. They are so wonderful. Do you know how many prayers I said, begging God to let me be a Mommy one day? To give me a boy and then to give that boy a little brother? I think I remember my first prayer asking God to give me my own baby. I was about 5 or 6. It has been my lifelong dream. He has answered my prayers with my Liam Joshua, my Asher Caleb and my Lucy Dair, who I will know one day. He is a good God who loves to give His children good things. I am so thankful He let me be a Mommy like I asked (begged!) I cherish my children so much.
And can I just brag about my two boys? I’m sorry if this is annoying and I give you full permission to stop reading now, because I am going to brag about my sons. Liam has the most amazing/ridiculous brain. I thought I was well prepared for motherhood after helping my Mom with my little sisters and brother and getting my degree in early childhood and elementary education. Nothing could have prepared me for my Liam. Since he is my first child I have asked my Mom for advice many times regarding Liam and she usually says, “I don’t really know. I’ve never seen a child like him.” And she raised 5 (not so easy to raise) children. He is extremely emotional, in love with danger, totally unpredictable and he would rather eat broccoli than ice cream. He started reading when he was two and a half (without much help from anyone besides PBS kids.) He started reading before he was even potty trained. Once when he was one I gave him some pretzels and noticed he wasn’t eating them, he was biting them and breaking off pieces so they formed letters. Liam says the most wonderful things. Here are some of my favorites-
TWO YEAR OLD LIAM:
“Daddy, Daddy, I found a nose under my eyes! And there’s a back under my neck!”
Me: Liam, I got you some Halloween cookies! Are you excited?
Liam: Umm….how about some fruits and vegetables? Fruit starts with the letter F.
“Mommy, when is it my turn to drive the knife?” (As I’m cutting apples.)
“Daddy, is your name ‘Daddy’ or ‘Babe’?”
He was so obsessed with letters that he imagined the world as a book. When someone was in his way he would say, “Excuse me, that’s my page. Move.”
THREE YEAR OLD LIAM:
“Mommy, squares are called tiles and rectangles are called bricks, but what are circles called?”
“Mommy, I just can’t sleep because I need to poop and I need you to spell a word and I need to think about it.”
“Why isn’t ‘new’ spelled N-O-O since O-O makes the ooh sound?”
“Mommy, where is the S-H in lotion?”
“Hey Dad, what are those pictures called that float in the air while I sleep?” (dreams)
“Mommy, what’s an artichoke? Is it something you have to do at the doctor?”
“Mall is spelled M-A-L-L, but Molly in my class is spelled M-O-L-L-Y, so mall should be spelled M-O-L-L.”
FOUR YEAR OLD LIAM:
Liam: Mommy, come play trains with me.
Me: Not right now, I’m spending time with Jesus.
Liam: Ok, tell Jesus he can come too.
“I just can’t wait to grow up so I can be a taxi driver.”
“Mommy, for dinner can we have that dog food that people eat that looks like a popsicle?” (corn dog)
Me (as Asher is screaming hysterically): Liam, what did you do to your brother?
Liam: Nothing, Mom. I just broke his heart.
Long before I met Josh I dreamed about my son. He was standing on a curb and the sun was hitting his beautiful white blond hair. His hair was so curly and his name was Liam and I begged God to let it be. Here I am now, with my Liam Joshua, who I love with all of my heart. I treasure every day I get with him.
Liam drinking his first cup of coffee (mostly half and half)
After Liam was born we begged God to give him a brother. I prayed that this baby would be big and chunky and would love to eat and would not have colic. I told God that while He was making a colic-free baby for me, maybe He could just go ahead and make him a happy, easy baby as well. When I was pregnant with Asher we didn’t know what to name him, so we asked God to help us find the perfect name. God helped me find “Asher” which means happy and blessed. We loved it, but kept it a secret until he was born. We didn’t tell anybody, but one day while I was still pregnant my Mom said, “I just have to ask, is his name Asher? God told me his name is going to be Asher.” I couldn’t believe it. Sure enough, Asher weighed three pounds more at birth (even born at the exact same gestation) than his brother- 10 pounds 2 ounces. He is the most happy, easy baby. He lives up to his name. He will give me a kiss whenever I ask, no matter what he is in the middle of. He will stop his monster truck race, his train rescue mission, his task of complete house destruction to come kiss his Mommy. He says the sweetest things like, “Mommy booful hair!” and “Asher love, love, love Mommy.” He smells mostly like a toddler, with just a hint of that sweet baby smell still lingering. I love him so much. I’m so glad I have my boys and that they have each other.
*TRIGGER WARNING* This blog post includes my experiences through three very high risk pregnancies and discusses stillbirth. There are some sections specifically written for the women who have been given a poor or fatal prenatal diagnosis like we were. If you have a less serious high risk diagnosis, I suggest skipping over the “Go there once” and “Prepare” sections.
“So, there’s a problem with your blood work.”
And just like that my world changed forever.
Is there anything more primal than a parent’s fear when they realize their child is in danger? There is no terror quite like it. After two healthy, normal pregnancies I was sent flailing into a terrible new world when I found out at nine weeks that my third pregnancy would be an extremely risky one. My baby’s life was in danger and there was very little I could do to protect my child. Not only that, but I was also told that all of my future pregnancies would be high risk as well. It wasn’t just this baby who was in danger, but all of my future children as well. My lifelong dream of a big family seemed to evaporate in that moment. The fear and anxiety consumed me. It was always at the forefront of my mind. Suddenly the joy and innocence of pregnancy and child birth were gone and instead I was left feeling terrified, vulnerable, and broken. I couldn’t look forward to my due date with anticipation like before. I couldn’t make plans for this baby. When I thought about the coming months, I was flooded with a fear stronger than any I had ever felt in my life.
I am now on the other side of my three high risk pregnancies. As a quick recap, I was diagnosed with anti-Kell antibodies and my body attacked my babies in utero making the pregnancies very dangerous for them. My daughter, Lucy, was stillborn a few days shy of 20 weeks in my first high risk pregnancy. In my second high risk pregnancy after a lot of intervention, my daughter, Nora, was born healthy at 37 weeks 6 days. In my third high risk pregnancy, after lots of intervention like Nora, my son, Callum, was born at 34 weeks and 4 days and spent almost three weeks in the NICU. I have learned a lot from my journey through these pregnancies and would like to share some of the things that helped me survive them. Not only did I survive them, but I learned to find joy; to seek out and appreciate the joy, no matter how minuscule it was, and make it my own in the midst of hardship and fear. I believe you too can not only survive your high risk pregnancy, but find the joy and the beauty in it as well. Since every pregnancy is different, what helped me might not be beneficial to you so feel free to discard any suggestions that don’t feel right for you personally or might not fit your situation. If I could sit with you face to face over a cup of tea or coffee and share my experience with you, this would be my advice:
You’re going to feel what you’re going to feel
There are a lot of suggestions in this blog post but when it comes down to it, most of the time, you are going to feel how you feel. Your emotions are largely out of your control when you are pregnant, and especially when you find yourself stuck in the middle of a high risk pregnancy. Anger, sadness, elation, fear, depression, gratefulness, anxiety, hope. All normal. Try not to be hard on yourself for feeling how you feel. Emotions are just emotions and they are temporary. Emotions aren’t truth, thank goodness. It’s ok to feel how you feel.
Try not to compare this pregnancy with your previous pregnancies or with others’ pregnancies.
As a mother I have struggled not to compare my children with other children and not to compare myself with other mothers. In the end it only leads to feelings of inadequacy or pride depending on who came out on top as the “better mom” or “better kid.” The same goes for our pregnancies. We cannot expect every child to be exactly the same and we can’t expect every pregnancy to be the same. One of the biggest sources of pain for me was comparing my high risk pregnancies (especially the first one with Lucy) to my previous two normal pregnancies. They were such different experiences that I felt like I couldn’t help but constantly compare them. And when I compared my high risk pregnancy to my “normal” pregnancies it always felt like the high risk pregnancy came up lacking. I also struggled not to compare my difficult pregnancy with the experiences of the women around me who were having normal, easy pregnancies that ended with healthy babies. It wasn’t fair! Why did my baby have to suffer? And why did I have to go through so much agony when they got to live on blissfully enjoying their healthy pregnancies? The jealousy and rage could consume me if I dwelt on it too long or if I saw one of my pregnant friends complaining on Facebook about how hard it was to drink the glucose drink for her diabetes test or how hard it was when her healthy growing baby danced on her bladder at night. What helped me the most was remembering that each baby is unique and so is every pregnancy. Each one of my children is so different and they each have their own quirks, faults, strengths and unique personalities. Each pregnancy also has it’s own difficulties and it’s own beauties. This high risk pregnancy was part of my baby’s unique story and I decided that I was along for the ride, no matter how difficult it might be. Lucy’s story is her life story. Nora’s story is hers, and Callum’s is his. No matter how hard some of the details are, they are theirs and since I am their mom I accept and cherish every one of their unique stories. I don’t want some other lady’s pregnancy because that’s HER baby’s story. This is MY baby’s story and I will own it and appreciate it as their unique story. Protect this perspective as much as possible. For me, this meant unfollowing certain people on social media or staying off social media when I was feeling vulnerable or frustrated. I also did not attend stressful events like baby showers or go near the baby section of stores.
Research, get a second opinion, make a treatment plan.
When people are facing a new medical diagnosis they are often told by well meaning friends and family, “Don’t google it!” in an attempt to protect the person from unnecessary anxiety. But protecting your baby is much more important than protecting your emotions. I actually found that the more I understood about what was going on inside my body and the more I understood about the risks and treatment options, the more confident I felt. Google it and research your condition as much as possible. Educate yourself so that you can be an advocate for your child. You are the parent and you should play a vital role in your child’s medical treatment decisions. If you are facing a serious medical diagnosis, get a second opinion. Then make a treatment plan or course of action plan that you feel confident about. In my first high risk pregnancy I did not feel comfortable with my treatment plan and I didn’t get a second opinion because it would have meant traveling out of state for medical care. We were told that our hospital was exceptional by those around us so we trusted the MFMs’ treatment plan even though we felt uneasy about it. Our daughter died as a result. With my two subsequent pregnancies I spent hours researching, asking questions and educating myself about anti-Kell antibodies and the treatment options. We traveled out of state for the best medical care possible and I had a treatment plan that I felt very confident about. I knew that if we lost our baby, I would have done everything possible to save her and that brought me some level of peace. Both babies survived because they received the correct medical treatment.
Baby’s life over everything
This one is specifically for the women with very high risk pregnancies who don’t know if their baby will survive. I know that I don’t have to remind other moms of the importance of their baby’s life. It is the reason you are reading this blog post, it is at the heart of all you do. But I do just want to remind you not to let things that are temporary or less important prevent you from doing everything possible to save your baby. If I had a list of the things in my life from most important to least important, which of these things would be at the top? Job, finances, keeping regular weekly schedule, personal comfort, MFM’s feelings, older siblings comfort and regular schedule, the opinions of others, your baby’s life. Your baby’s life is at the top of the list. Do not let something that is lower on the list get in the way of doing everything possible to save your baby’s life. Even if you lose your baby in the end, it will be very important to know you did everything you could have to save your child. With my second high risk pregnancy I decided that I could not stay with the MFMs at UAB in Alabama who made mistakes with my previous baby so I drove 11 hours to Houston, Texas to be treated by Dr. Ken Moise. I felt a little irrational when I decided to go that far with my four year old in tow (on his birthday nonetheless!) It was inconvenient, we didn’t have the money (we are still trying to get out of debt three years later.) It was really hard to leave my oldest son, who was in kindergarten at the time and to leave my husband, and it was sad to have to quit my part time job, but when I walked into The Fetal Center for my first appointment I felt a great weight lifted off my chest and I knew my baby was in the best hands possible. It immediately alleviated a lot of the stress I had been carrying around and I felt peace knowing that I was doing everything in my power to save my baby Nora.
Grieving is normal, regardless of outcome.
Many things are lost in a high risk pregnancy and it is normal and appropriate to grieve for these things. Dead dreams, lost innocence, guilt, fear, painful interventions, inability to enjoy the pregnancy and difficulty accepting what is happening are just some of the things a pregnant woman might face during a high risk pregnancy. During all three of my high risk pregnancies I struggled at some point with heavy depression and anxiety. It wasn’t until my third one that I was able to accept the depression as part of the grieving process and I learned not to over analyze it. I knew that it would be temporary, just like the morning sickness, the back pain and the weekly MFM appointments. Let yourself grieve and mourn because you are going through a very real loss, even if you do end up with a healthy baby. The one thing you should not grieve is the loss of your baby because your baby is alive inside you right now. The time to mourn for your lost child is after you have lost your child, if that ever happens. Try not to mourn what isn’t lost yet.
Take lots of pictures
When I was pregnant with Lucy I was so terrified and often felt hopeless, so I purposefully did not take pictures of my growing baby bump. I thought it would protect me from more grief in the end if we lost her. I was wrong. After she died I desperately wished I had more pictures of my Lucy belly, since those were some of the only pictures I had of her while her heart was still beating. When I was pregnant with Nora I made sure to take lots of pictures and I posted them often on social media because I wanted to celebrate every week I got with her. I wanted to document her life and find joy in my growing belly and taking pictures was an exercise in hope for me. I knew that I would cherish the pictures whether she survived or not.
Go there, ONCE
The fear of losing my baby consumed me when I found out my baby could be in danger. There was a constant feeling of dread that weighed me down, like a heavy blanket. Over and over again I wondered what the future would look like. Would my baby survive? Would I survive if I lost my baby? What would I tell my older kids? Subconsciously I would fast forward and live out the worst case scenario in my head, over and over again. This is not healthy and it is not helpful to anyone, including your baby. I decided to go there in my mind, ONCE, and try to make any preparations needed just in case my worst fears came true. Then, I did not go there again. If I felt my mind slipping and I started imagining the worst, I would purposefully stop my thoughts and remind myself that I had already thought through that scenario and prepared for it as much as possible. There was no need to go there again. As a side note, I wasn’t always able to control my thoughts but I tried my best.
Prepare
As I just mentioned, it helped me to feel as prepared as possible for the worst, just in case it happened. I learned with Lucy, that no amount of bracing myself emotionally or trying not to get attached or not allowing myself to hope, could prepare me for the loss of my child. None of it helped ease my grief in the end. But there are some practical things that I wish I had done ahead of time that would have helped a little bit. When I was pregnant with my baby Nora the doctors gave her a 0% chance of surviving the pregnancy, so I felt that a stillbirth was imminent. I had her diaper bag already, since we had bought it for our baby Scarlet, but never used it in the end because the adoption fell through. I removed all of the cute things we had for Scarlet from the bag and packed the bag with tiny preemie hats, little bows and headbands, a couple of cute preemie outfits and a beautiful, soft pink blanket that I bought just for Nora. All of these things could have been used if Nora had been stillborn. The hats, bows, tiny outfits and blanket would have been used for pictures and then saved as precious momentos of our daughter. I purposefully did not pack pacifiers, diaper cream or other things needed for a living baby because I did not want to face those emotional triggers if we lost our daughter. We also picked a name out as soon as possible since we truly had no idea when we would need to name our daughter; 16 weeks? 20 weeks? 30 weeks? Having name ideas ready helped me have one less thing to worry about. We also were very honest with our two sons about everything throughout the pregnancy, which is a personal decision that might not be right for your family. For us, we knew it was best to tell the boys (3 and 5 at the time) at the very beginning of my pregnancy with Nora that Mommy was pregnant but we did not know if the baby would come live with us in our house, or go live in heaven with Lucy. We didn’t have the option of not telling them about the pregnancy because I had a permacath placed and two very obvious tubes coming out of my chest and we would be relocating for the pregnancy so it was impossible to hide. We told them that the baby would get sick in Mommy’s tummy and need medical help and we could pray that she would survive. But God was in control and we could always, always trust Him. They understood and handled everything better than expected, as children often do. Once I had the diaper bag packed, the name picked out and the boys informed, I felt as prepared as possible for the worst. Then I made an effort not to allow myself to go there again in my mind. I could remind myself that everything was ready in case we lost her and I put the idea of my baby dying far up on the shelf in the back of my mind, in a box, padlocked and shut away. I knew it was there, but I chose, day after day not to focus on it.
HOPE.
This one turned out to be one of the hardest for me, especially after losing Lucy during my first high risk pregnancy. We were given no hope with our baby Nora once we discovered that she had Kell positive blood and would be attacked in utero by my antibodies. The doctors said she would not survive. But I think hope is crucial to surviving and finding joy during a high risk pregnancy, no matter the odds. I learned with Lucy that whether you have false hope or you “prepare” yourself emotionally for the loss of your baby, if you do end up losing your baby the grief is still the same. Deciding not to have hope during your high risk pregnancy will not shield you from the pain of losing your child if your baby doesn’t make it. But hope during your pregnancy is life giving and I like to think that your baby feels that hope running through your veins into her little body. Yes we are afraid and we worry about our babies and we stress about the details of the disorder or we dread the possibilities, and maybe it isn’t possible to feel hopeful at the moment, but we can at least leave room in our hearts for hope. Even if it’s just a tiny space, leave some room for hope. One ounce of hope is more powerful than 10 tons of fear. You never know what miracles might happen. These are what my babies look like today, the ones who were given no hope of surviving, the ones we were told to terminate:
Focus on the next milestone
I quickly learned that if I looked ahead to my due date or afterwards, it only stressed me out because it felt like I was pulling down that padlocked box I had put up high on a shelf in the back of my mind. Instead, I focused on the next milestone and prayed about making it that far. Seeing a heartbeat on the early ultrasound, getting through the surgical placement of my port and permacath, making it to the second trimester, first MCA scan, getting far enough along for baby to have an IUT if necessary, the next MCA scan, the first IUT, making it to viability with a heartbeat (the biggest milestone for me!) 28 weeks, etc. Sometimes the goal was just to make it through the day. This helped me feel a little bit more in control to have small goals that felt attainable.
Get a home doppler.
This is another personal decision that might not be right for you, but it helped me a lot so I am including it. When I first got my home doppler I knew I had to set up some rules for myself before trying to use it because I knew it could end up creating unnecessary anxiety. I decided to only use it once a day at the most and to only try 15 minutes at a time to find baby’s heartbeat. I know I am not a medical professional and have not been trained to use the doppler so it was ok if I didn’t find baby’s heartbeat right away (especially early in the pregnancy.) I gave myself 15 minutes to find the heartbeat and if I didn’t find it within that time I would put my doppler away and do something else. Once I was out of the first trimester I was always able to find the heartbeat within ten minutes. I watched Youtube videos showing how to find baby’s heartbeat with a home doppler and that helped me figure out how to do it. Another rule I had was kick counts over doppler. If baby wasn’t meeting the kick count, but I could still find baby’s heartbeat, I still went in to have baby checked out. Just because I could hear baby’s heartbeat it didn’t mean baby wasn’t in danger. It just meant baby was alive. But the home doppler was a godsend in those irrational moments when I would suddenly feel panic wash over me and I would think, “My baby is dead I know it!” Just hearing the sound of my baby’s heartbeat would calm me down and I would sit listening to the thump, thump, thump until my own heart stopped racing. This was especially needed after having a procedure like the amniocentesis, surgical placement of my port or IUTs when I was very worried about baby’s well being. The purpose of the home doppler is to bring you peace and not to create more anxiety. It is also not meant to be used by you to diagnose your baby. If you start sensing that the doppler seems to be causing more stress than reassurance, sell it or give it away.
Ask your doctor about antidepressants or anti-anxiety medication
Again, this might not be for everyone, but if you are struggling with anxiety or depression during your pregnancy, talk to your doctor about your options regarding medication. I started taking Wellbutrin after Lucy died and my doctor and I agreed that it would be best for me to continue taking it during my pregnancy with Nora since it was such a high stress situation and I struggled with PTSD. The Wellbutrin is considered safe during pregnancy and breast feeding and is non-habit forming so I could stop it at any time in the future if I felt like I wanted to. The Wellbutrin helped keep my anxiety from growing to a point where it was out of my control. It also helped prevent postpartum depression after Nora was born. I took it throughout my year of breastfeeding Nora, through my pregnancy with Callum and during my year of breastfeeding Callum as well.
Find encouraging verses, pray them over your baby.
This is another personal one that might not feel normal for those who are not people of faith. But God is still God and He loves your baby deeply and He is always available to you, whether you pray on a regular basis or you never have in your life. It might flow easily for some and it might feel really awkward and forced for others. I encourage you to give it a try. Prayer is the single thing that helped me survive my high risk pregnancy the most and enabled me to find the joy along the way. There is something so purely peaceful and reassuring about entrusting your child back to God and saying, “Protect my baby. I trust you.” He is the one who has ultimate control over the situation. I found several Bible verses that encouraged me and I read them and prayed them over and over again. They were written in my medical journal that I took with me to every appointment so that when I was in the hospital or the MFM’s office and I opened my journal I would see the verses. I tried to read them at night before going to bed since the middle of the night is often when our fears loom larger than they are in the daylight. I found that just like Peter in the Bible, when he was walking on the water towards Jesus in the midst of a raging storm, if I looked at the giant waves threatening me, I would start to sink. But if I looked to Jesus and focused on His face and His promises, I was saved. Reassured. Lifted up out of the swirling waters that threatened to drown me. These are some of the verses that helped me the most during my high risk pregnancies (I’ve also included a prayer with each verse that you can pray if you aren’t sure what to say):
Zephanaiah 3:17 The Lord your God is in your midst, a mighty one who will save; He will rejoice over you with gladness; He will quiet you by His love; He will exult over you with loud singing.
Prayer: Lord, I know that you are in my midst; you are right here with me at this very moment. Quiet my anxious heart by your love. Fill me with your peace. You are the mighty one who will save. I pray that you save my baby. Strengthen my baby for this journey and let my baby feel your love and peace right now.
Isaiah 41:10 Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you. I will uphold you with my righteous right hand.
Prayer: God, you tell me not to fear but I am afraid and I’m worried about the future. Take my fear away and replace it with trust in you. Come and help me, strengthen me and uphold me with your hand. I need your reassurance. Thank you for loving me so much. Thank you for holding me up when I cannot stand on my own.
Isaiah 26:3 You keep him in perfect peace whose mind is stayed on you, because he trusts in you.
Prayer: When the waves are so big I feel I will drown, help me keep my eyes on you, draw me out of that mind space of fear and dread. As I look to you for comfort, overwhelm me with your perfect peace and help me focus my mind on you. Thank you for being bigger than any problem I have to face today.
Romans 15:13 May the God of hope fill you with all joy and peace as you trust in Him so that you may overflow with hope by the power of the Holy Spirit.
Prayer: Lord, you say you are the God of hope and I choose now to trust in you. I am trusting you with the things I cannot control. Nothing is out of your control and I feel the peace of handing it all over to you. Fill me with your hope and peace, OVERFLOW my heart with peace. Not only peace and hope, but also joy. Please help me to find joy today, no matter how impossible it feels at this moment.
Psalm 32:7-9 You are a hiding place for me; you preserve me from trouble; you surround me with shouts of deliverance. Selah. I will instruct you and teach you in the way you should go; I will counsel you with my eye upon you.
Prayer: God, I am scared about what will happen to my baby. I’m so anxious and worried about the future. You are my hiding place. When the storm of fear, worry and sadness swirls all around me I know I can find safety in you. Surround me and my baby with protection and safety. Preserve us from trouble. Give me wisdom along this journey. Help me make the right decisions regarding my baby’s medical care. Give my doctors wisdom and help them make the best decisions for me and my baby. You say you will counsel me with your eye upon me. Thank you for loving me so much that you keep close watch over me and my baby.
Psalm 18:31, 32 For who is God, but the Lord? And who is a rock, except our God? -the God who equipped me with strength and made my way blameless.
Prayer: Oh God, be my rock and my stability. My whole world feels shaky and terrifying right now as I wait and hope for my baby’s safety. You are my strong foundation and because of you, I will not be shaken. Thank you for being so strong and for being my anchor. Equip me with strength to get through today and tomorrow and the rest of this pregnancy. Equip my baby with strength right now, Lord, and wrap my baby in your protection.
Find the Joy
Even in the most terrible situations, even on the hardest days, there are small gifts of joy. Difficulty and sadness do not cancel out goodness and joy. If I have learned anything over the past few years it is that they can exist together. I realized during my high risk pregnancies that if I looked closely enough, nestled there amongst the fear, the pain, the uncertainty and disappointment, there was joy. Sometimes just a tiny drop, but still joy. One of the strongest emotions I dealt with during my pregnancies was dread. I had to endure painful procedures and awful side effects. I found myself dreading the procedures for weeks before they actually took place. I dreaded the surgical placement and removal of my port and permacath. I dreaded my plasmapheresis treatments and especially my weekly IVIG treatments that left me with debilitating migraines, vomiting, terrible muscle pain and weakness. Of all the procedures I experienced, the one I dreaded the most was the intrauterine blood transfusions the doctors had to routinely perform in order to keep my baby alive. One day before one of my IUTs with baby Nora I was so tired of the overwhelming dread that I prayed audaciously for God to not only help me endure the IUT but to actually help me find some enjoyment in it. The next day I purposefully searched for the gifts that I could enjoy, even though I was terrified for my baby and not looking forward to a needle being pushed through my body. “Ok, what can I appreciate about this?” I thought as I put on the thin hospital gown and waited for the nurse to come insert my IV. Well, there weren’t any little kids around who needed something from me. I could be alone (something I often coveted while at home on those overwhelmingly busy days) and I could nap if I wanted. As the day progressed I glimpsed little gifts from God, gifts that were always there but I hadn’t noticed them before. When the nurses lifted me and placed me on the operating table in the freezing operating room, I savored the heavy, warm blankets they draped over me. The warm air that blew under the blankets at the foot of the operating table felt amazing. When Nora’s ending hematocrit was called out to me after they got the blood to her I thanked God for the miracle of the IUT, that these doctors could fill my baby up with fresh, healthy blood even while she remained in utero. The sedation they gave me through my IV calmed my nerves and I appreciated it as I drifted off to take a much needed nap in the recovery room after the procedure was done. I awoke to the sound of my baby’s strong heartbeat thump thumping on the monitor and I thanked God for the best gift- a baby with a beating heart still inside me. Ever since that day when I dread something that I have to endure I pray and ask God to help me find some enjoyment in the experience and He always does. I also realized the one of the best ways to guarantee joy is to be thankful.
During my last pregnancy with my baby Callum I had to travel to Atlanta for my weekly (sometimes twice weekly) appointments which ended up being about 8 hours of driving in a day. It was exhausting and difficult to find childcare for my three kids during these appointments, not to mention all of the other medical procedures. Near the beginning of the pregnancy I wilted as I thought about making the trip week after week throughout my entire pregnancy. How could I do it? I often had to wake up at 3 or 4 am to get to my appointment on time (Atlanta was in a different time zone which didn’t help.) But I prayed and asked God to help me enjoy it somehow and I thanked Him for the hours I got to spend in my car. I decided to use the hours for things I couldn’t do when I was home with my one year old Nora and her big brothers. I prayed without interruption. I listened to podcasts and books on cd and 90s gangsta rap once I got close enough to Atlanta. I packed delicious food for the drive and enjoyed eating in peace (poor Dr. Trevett always wondered why Callum was so active during the ultrasounds and I’m pretty sure it had something to do with the four hours of eating I did leading up to the ultrasound.) I memorized verses and called and talked to friends. I started looking forward to my long drives and I realized that they refreshed me in a way. Once, I almost had to pull over on the side of the interstate because I was laughing so hard listening to David Sedaris’ Me Talk Pretty One Day (strongly recommend!) Tears of laughter streamed down my face, blurring my view of the road, and I realized that my heart was full of joy- right there in a dark and scary place in my life. Belly laughs right there amidst the back pain, headache and nausea while I drove to the ultrasound that would show whether my son was thriving or not. One of my favorite verses is Psalm 4:7 “You have put more joy in my heart than they have when their grain and wine abound.” My personal paraphrase of this verse for my high risk pregnancy was, “You have put more joy in my heart than they have when their pregnancies progress without any problems.” My true source of joy is God, not my circumstances, and nothing can take Him away from me. He can give me more joy in the middle of my high risk pregnancy than those who have easy circumstances. Ask God to give you joy right where you are. Look for the small pockets of joy and you will find them.
Distract Yourself
Once you have done all of the hard work of researching and making a solid treatment plan, working through your emotions and preparing for the future, the best thing you can do is distract yourself. You’ve done everything in your power to keep your baby safe and now you just have to wait without going crazy. Find ways to keep your mind busy and be kind to yourself…family outings, books, Netflix, podcasts, music, shopping, whatever it takes to help pass time. I listened to a daily podcast called Brant and Sherri podcast which was really silly but uplifting and it always helped me when I was feeling very anxious. I also listened to Podcasts during my IVIG treatments and encouraging songs helped too. I tried not to leave any empty space of quiet and inactivity because it was then that my mind would start spiraling.
You are equipped.
I firmly believe that if you are pregnant, you are already a parent. You don’t become a parent the day your child is born. You become a parent when you discover that your child is growing inside you and that is when you start making important decisions for your child. You make medical decisions regarding your prenatal care which affects your baby. You make decisions about what you will and won’t eat in order to keep your baby safe. You make decisions about genetic testing, birth plan, which pediatrician to use, etc. Not only are you a parent already, but I believe that God designed your specific baby for you and He has equipped you to be that child’s parent. He will give you the wisdom, the strength and the love you need to get through this pregnancy because that is what you need to do as this baby’s parent. Every parent is going to struggle in different ways along their parenting journey with each of their children, whether it’s during pregnancy, during the toddler years, teenage years or when their children are adults. Each one of my children needs certain things from me as their mother and many times it requires a dying to self on my part. Awkward confrontations with fellow parents, losing sleep during infant years, hours spent in the pediatrician’s office or staying up late waiting for your teenager to come home. Liam, Asher, Lucy, Nora and Callum have all needed me to parent them in certain ways. Actually, writing this blog post is one of the things I feel I need to do to “parent” Lucy the best way I know how. All of the stress, the agony and the pain of your high risk pregnancy? This is what this child needs from you as their mother. This is your sacrifice for your baby and you are equipped to do these things for your child.
I applaud you if you’ve made it all the way through this long blog post! To wrap things up, I want you to know that YOU CAN DO THIS. I have experienced outcomes on the worst and the best ends of the spectrum when it comes to high risk pregnancies. One pregnancy ended with the death of my child and two of my high risk pregnancies ended with healthy babies. Throughout these experiences God was faithful and He gave me what I needed at the time to get through it. I was not consumed and you will not be either. You are going to get through this.
Lamentations 3:22, 23 Because of the Lord’s great love we are not consumed, for His compassions never fail. They are new every morning; great is your faithfulness.
Every morning when you wake up God has new mercies waiting for you. That includes today, right now. And the best thing is that He has gone ahead of you in this day and in this pregnancy. He is there in the future waiting for you, ready to take care of you. None of this is out of His control. He will never leave you or your baby.
Deuteronomy 31:8 The Lord Himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged.
Last year at this time my newborn Callum was in the NICU and I was staying at the Ronald McDonald House with two year old Nora and my Mom (most of the time.) Since Callum’s first birthday I have been surprised and kind of annoyed by the waves of emotion I’ve been experiencing. The days he spent in the NICU replay vividly in my mind. That night when Josh had to drive Liam and Asher back to Tuscaloosa and I was left alone in the hospital recovering from my c-section and I hobbled down to the NICU at 2 am because I missed my baby so much. I couldn’t hold him yet, I couldn’t breastfeed him or have him in my room, but I COULD look at him, so when my thirst for him just could not wait another minute I walked all the way to the NICU without a wheelchair for the first time, alone. When I finally saw him the pride and goodness of my boy filled me up, but the nurse was visibly irritated by my presence. She side eyed me standing there next to his bassinet and I asked if he had taken anything by mouth. I had been waking up every three hours to pump and then getting up to wash all the pump parts and labeling the breast milk and sending it to the NICU, so I was proud of the breast milk that was available for him now. “Yeah, he had formula and did a pretty good job with the bottle.” “Oh, why wasn’t he given breast milk?” I asked. “I just reached in and grabbed whatever was there and it happened to be formula. He’s been crying for the past hour and I just got him to sleep. It’s not even feeding time so please don’t touch him. It’s not really time for you to be here.” she said. I was stunned into silence. Right after he was born my nurse had told me I could go down to the NICU and see my baby any time I wanted. But now, the one thing that brought me comfort, being able to physically be present with Callum and see him in the flesh, this nurse was taking it away from me? And he had been screaming for an entire hour without his Mommy. And the milk I had worked so hard to pump for him was left in the cooler. I didn’t say anything and stood there like a little kid who just got in trouble for coloring on the walls. Post pregnancy hormones coursed through me and I crumpled into tears and just sobbed, heaving and heaving. It was so embarrassing. Snot and tears trickled down my face and I stood rooted there, body aching from being on my feet for so long but I didn’t know what else to do. The nurse felt awkward and handed me a tissue. I wiped my face and hobbled out the door, down the hall, into the elevator back up to my hospital bed, crying the whole time. I know the nurse probably had a long day and was tired of taking care of somebody else’s screaming baby and wasn’t trying to hurt me, but I felt completely defeated. Now in hindsight I’m irritated with my self for not standing up to that nurse and explaining that if they had certain visiting hours for parents they should have told me, and please give him the breast milk I sent for him. Why do I even care? Callum is literally playing right in front of me right now and he is perfectly healthy and he’s with me ALL OF THE TIME. He has no recollection of that incident so why am I wasting my emotional energy on it right now?
I think having a baby in the NICU is hard for any mother but it’s even harder after you have lost a baby. It’s hard to be empty handed after giving birth, AGAIN. At the time I was in survival mode…pump, go visit Callum, drop off milk, breastfeed, go back to be with Nora, take care of Nora, eat, pump, head back to Callum, etc. (there was very little sleeping going on.) But now, in hindsight, I can make a bit more sense of how I felt. For some reason while Cal was in the NICU I felt like my parental rights were waived and the nurses were his parents, calling the shots. I had to be given permission to hold my own baby or to even be there by his side. I had to ask if I could touch him, feed him, hold him, change him. Most nurses were amazing and I was overcome with gratitude for these women who poured so much love into my baby. They even sent a card to our house after we got home with Callum congratulating us and thanking us for choosing them to care for Callum, which was so amazing. But my mind flits past that and settles on the one nurse who, after I had just met with a therapist about how to handle a preemie, broke all the “rules” I had just been taught and roughly picked up my baby, startling him into screams. She moved quickly and suddenly with him and was not gentle. He cried and I just watched because I wasn’t the parent in the NICU. But if my newborn had been in his little bassinet beside me in my hospital room recovering after the birth and a visitor handled my baby that way I would immediately take him out of her arms and not allow her to hold him anymore. The NICU was different, though, and I had to leave my son there all night with that nurse, and I felt sick leaving him there. I couldn’t sleep either because I worried about him. The next morning he was fine and I felt silly for my strong emotions and fears. But now these experiences replay in my head and I grieve again for the days I lost with Callum. I wonder if I should have been more assertive as his mother? Maybe I was too assertive? Since I felt like I wasn’t the parent, it was hard to bond with Callum like I should have in those early days and that is what grieves me the most, I think. I didn’t get to start truly bonding with him until he came home and I was his mother. People asked ME for permission to hold him and I had the choice not to leave him with anyone I felt uneasy about.
I remember how painful it was after Lucy died to hear women complain about how hard the NICU was. I equated the NICU with “live baby” and envied women who got to experience the NICU. In a way I felt like I was one of the lucky ones while Callum was in the NICU which gave me a weird sense that I was not allowed to grieve the losses I was experiencing. They were on such a smaller scale than the losses of the women who gave birth to still babies. But not grieving properly means the grief can fester and erupt later so now, one year later, I am grieving for the things I lost with Callum in his early days. Tomorrow will be one year since he was discharged from the NICU and I’m hoping this weight will lift and I can move on. I am so thankful to have him home now, healthy and thriving, and I revel in the fact that I get to be his Mommy, just me and no one else.
These last few weeks I have been getting through the days weighted down with stifling depression and grief. Sometimes it lets up, but since I lost Jude it has laid heavy on me. This last week I let myself be honest with God and I said, “You say you will be close to the broken hearted, you say you are the God of all comfort. You say you will heal me and let me feel your presence. Where are you? Come and be my comfort, my peace, my healing. Show me that you are telling the truth.”
Every time I have prayed this kind of prayer (which has been quite often since losing my Lucy) God answers me, and He almost always answers me through other people. This past week a woman from my church told me about her 14 week loss many years ago. She gave me this sweet little pin and said it was for me to remember baby Jude.
She told me it was hers after she lost her son and she used to keep it in her pocket for comfort and now she was giving it to me. It was so sweet. I have several things to remember Lucy by, but very few things for Jude, so this was just perfect. I felt so comforted that she would share this with me and let me share in her loss too. I also felt God’s love through her.
The next day a little girl from my church emailed me and asked if it would be ok if she and her friend made Lucy a blanket. I cried when I read it because I have been thinking lately how sad it is that I didn’t even get Lucy a pretty, girly blanket. I could have wrapped her in it and it would have been so special. It also meant so much to me that these little girls even remembered Lucy. Most people have moved on and rarely think about her, and I think about her every minute and cry for her every day. What a sweet expression of love for these girls to remember Lucy and to remember me. I cried again when Savannah and Briley brought over the pretty blanket they made for Lucy. I loved it. It even had her name on it. These little girls probably just wanted to do something nice for someone, and they probably have no idea how God used their kindness to encourage me this week. After they brought me the blanket I felt like God was saying, “See? I love you and you are important to me.” This blanket is now one of my most prized possessions. I will love it until the day I die. I can picture myself as an old, wrinkled lady holding this Lucy blanket and still feeling the comfort from it, still feeling the love of the body of Christ that it represents, even decades from now.
Sometimes the smallest act of kindness can mean the world to someone else. If you are a woman who has suffered a pregnancy loss and you know someone who has just lost a baby themselves, be brave and share your story with them. I have found the most comfort from women who have lost babies themselves and I always think, “What if she hadn’t said anything?” Thank you Savannah and Briley for listening to the Holy Spirit’s prompting and for making such a beautiful blanket for my Lucy. And thank you to every single woman who has ever been brave enough to tell me about the baby you have lost. You have comforted me and encouraged me so much and you inspire me to tell more people about my Lucy and Jude.
Last year at this time my newborn Callum was in the NICU and I was staying at the Ronald McDonald House with two year old Nora and my Mom (most of the time.) Since Callum’s first birthday I have been surprised and kind of annoyed by the waves of emotion I’ve been experiencing. The days he spent in the NICU replay vividly in my mind. That night when Josh had to drive Liam and Asher back to Tuscaloosa and I was left alone in the hospital recovering from my c-section and I hobbled down to the NICU at 2 am because I missed my baby so much. I couldn’t hold him yet, I couldn’t breastfeed him or have him in my room, but I COULD look at him, so when my thirst for him just could not wait another minute I walked all the way to the NICU without a wheelchair for the first time, alone. When I finally saw him the pride and goodness of my boy filled me up, but the nurse was visibly irritated by my presence. She side eyed me standing there next to his bassinet and I asked if he had taken anything by mouth. I had been waking up every three hours to pump and then getting up to wash all the pump parts and labeling the breast milk and sending it to the NICU, so I was proud of the breast milk that was available for him now. “Yeah, he had formula and did a pretty good job with the bottle.” “Oh, why wasn’t he given breast milk?” I asked. “I just reached in and grabbed whatever was there and it happened to be formula. He’s been crying for the past hour and I just got him to sleep. It’s not even feeding time so please don’t touch him. It’s not really time for you to be here.” she said. I was stunned into silence. Right after he was born my nurse had told me I could go down to the NICU and see my baby any time I wanted. But now, the one thing that brought me comfort, being able to physically be present with Callum and see him in the flesh, this nurse was taking it away from me? And he had been screaming for an entire hour without his Mommy. And the milk I had worked so hard to pump for him was left in the cooler. I didn’t say anything and stood there like a little kid who just got in trouble for coloring on the walls. Post pregnancy hormones coursed through me and I crumpled into tears and just sobbed, heaving and heaving. It was so embarrassing. Snot and tears trickled down my face and I stood rooted there, body aching from being on my feet for so long but I didn’t know what else to do. The nurse felt awkward and handed me a tissue. I wiped my face and hobbled out the door, down the hall, into the elevator back up to my hospital bed, crying the whole time. I know the nurse probably had a long day and was tired of taking care of somebody else’s screaming baby and wasn’t trying to hurt me, but I felt completely defeated. Now in hindsight I’m irritated with my self for not standing up to that nurse and explaining that if they had certain visiting hours for parents they should have told me, and please give him the breast milk I sent for him. Why do I even care? Callum is literally playing right in front of me right now and he is perfectly healthy and he’s with me ALL OF THE TIME. He has no recollection of that incident so why am I wasting my emotional energy on it right now?
I think having a baby in the NICU is hard for any mother but it’s even harder after you have lost a baby. It’s hard to be empty handed after giving birth, AGAIN. At the time I was in survival mode…pump, go visit Callum, drop off milk, breastfeed, go back to be with Nora, take care of Nora, eat, pump, head back to Callum, etc. (there was very little sleeping going on.) But now, in hindsight, I can make a bit more sense of how I felt. For some reason while Cal was in the NICU I felt like my parental rights were waived and the nurses were his parents, calling the shots. I had to be given permission to hold my own baby or to even be there by his side. I had to ask if I could touch him, feed him, hold him, change him. Most nurses were amazing and I was overcome with gratitude for these women who poured so much love into my baby. They even sent a card to our house after we got home with Callum congratulating us and thanking us for choosing them to care for Callum, which was so amazing. But my mind flits past that and settles on the one nurse who, after I had just met with a therapist about how to handle a preemie, broke all the “rules” I had just been taught and roughly picked up my baby, startling him into screams. She moved quickly and suddenly with him and was not gentle. He cried and I just watched because I wasn’t the parent in the NICU. But if my newborn had been in his little bassinet beside me in my hospital room recovering after the birth and a visitor handled my baby that way I would immediately take him out of her arms and not allow her to hold him anymore. The NICU was different, though, and I had to leave my son there all night with that nurse, and I felt sick leaving him there. I couldn’t sleep either because I worried about him. The next morning he was fine and I felt silly for my strong emotions and fears. But now these experiences replay in my head and I grieve again for the days I lost with Callum. I wonder if I should have been more assertive as his mother? Maybe I was too assertive? Since I felt like I wasn’t the parent, it was hard to bond with Callum like I should have in those early days and that is what grieves me the most, I think. I didn’t get to start truly bonding with him until he came home and I was his mother. People asked ME for permission to hold him and I had the choice not to leave him with anyone I felt uneasy about.
I remember how painful it was after Lucy died to hear women complain about how hard the NICU was. I equated the NICU with “live baby” and envied women who got to experience the NICU. In a way I felt like I was one of the lucky ones while Callum was in the NICU which gave me a weird sense that I was not allowed to grieve the losses I was experiencing. They were on such a smaller scale than the losses of the women who gave birth to still babies. But not grieving properly means the grief can fester and erupt later so now, one year later, I am grieving for the things I lost with Callum in his early days. Tomorrow will be one year since he was discharged from the NICU and I’m hoping this weight will lift and I can move on. I am so thankful to have him home now, healthy and thriving, and I revel in the fact that I get to be his Mommy, just me and no one else.
That’s right, it’s negative. I got a negative pregnancy test for Mother’s Day.
It was our first month trying to conceive since we lost Lucy and I was surprised at how devastated I was. It felt like a slap in the face because I “should” be about 8 months pregnant, but instead I’m crying over a negative pregnancy test. Mother’s Day is hard for me now. Motherhood used to be my most treasured role in life, but now it will always be tainted with death and grief for me because I am a mother without my child. That ache can never fully be soothed, no matter how many living children I have or how many years have passed. A Mommy without her baby is a Mommy with an everlasting wound. Today is my first Mother’s Day without my baby Lucy and my wound is so fresh. It is a searing pain.
Today I am praying for all of the women who have lost their babies, and especially for the women who have lost babies and have no living children. I am also praying for the women struggling with infertility. Did you know that some women NEVER see two pink lines on that test? Do you know how absolutely frustrating it is for those women to try and try and see all the women around them having babies so easily while they long for just one? Through my loss I have been introduced to a totally different side of motherhood. I am now aware of the many, many things I took for granted. I took for granted the fact that I was able to get pregnant so easily. I always just assumed that when I got pregnant it meant I would get a baby. It doesn’t. In my first two pregnancies I bought maternity clothes, picked out names, dreamed about what my babies would look like, decorated their room, bought the baby clothes, complained about how horrible pregnancy was, how hard breastfeeding was, how difficult Liam’s colic was. I had no idea what blessings I was overlooking. I never realized how amazingly blessed I was to even get those two pink lines in the first place. I was SO BLESSED to vomit for four months while my healthy baby grew inside me, SO BLESSED to be able to pick out a baby name and actually get to use it. I was SO BLESSED to make it past the second trimester, to go through labor knowing I would get a live baby at the end of it. When I had trouble breastfeeding I never realized HOW BLESSED I was to actually have a baby to feed with the milk that filled my breasts. When I complained about not getting enough sleep HOW BLESSED I was to have a baby to keep me up at night. I had no idea. Now I do, and I will not take any of it for granted from now on. Thank you, my Lucy girl, for teaching me so many beautiful things about life. HOW BLESSED I am to have my Lucy waiting for me in heaven. How much sweeter is heaven now that Lucy is there?
To all the mothers who have their babies with them, cherish every moment and thank God for your many blessings. To all the mothers who have lost children and to the mothers at heart who are still waiting for their babies, know that I am praying for you today and weeping with you on this Mother’s Day. Our tears will not fall in vain. They are precious to the One who made us.
Psalm 56:8 You have kept count of my tossings; put my tears in your bottle. Are they not in your book?
Psalm 126:5,6 Those who sow in tears will reap with songs of joy. He who goes out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with him.
And now I would like to take a little bit of my own advice and remember the blessings that have been lavished on me. My two blond boys that I prayed so long for. They are so wonderful. Do you know how many prayers I said, begging God to let me be a Mommy one day? To give me a boy and then to give that boy a little brother? I think I remember my first prayer asking God to give me my own baby. I was about 5 or 6. It has been my lifelong dream. He has answered my prayers with my Liam Joshua, my Asher Caleb and my Lucy Dair, who I will know one day. He is a good God who loves to give His children good things. I am so thankful He let me be a Mommy like I asked (begged!) I cherish my children so much.
And can I just brag about my two boys? I’m sorry if this is annoying and I give you full permission to stop reading now, because I am going to brag about my sons. Liam has the most amazing/ridiculous brain. I thought I was well prepared for motherhood after helping my Mom with my little sisters and brother and getting my degree in early childhood and elementary education. Nothing could have prepared me for my Liam. Since he is my first child I have asked my Mom for advice many times regarding Liam and she usually says, “I don’t really know. I’ve never seen a child like him.” And she raised 5 (not so easy to raise) children. He is extremely emotional, in love with danger, totally unpredictable and he would rather eat broccoli than ice cream. He started reading when he was two and a half (without much help from anyone besides PBS kids.) He started reading before he was even potty trained. Once when he was one I gave him some pretzels and noticed he wasn’t eating them, he was biting them and breaking off pieces so they formed letters. Liam says the most wonderful things. Here are some of my favorites-
TWO YEAR OLD LIAM:
“Daddy, Daddy, I found a nose under my eyes! And there’s a back under my neck!”
Me: Liam, I got you some Halloween cookies! Are you excited?
Liam: Umm….how about some fruits and vegetables? Fruit starts with the letter F.
“Mommy, when is it my turn to drive the knife?” (As I’m cutting apples.)
“Daddy, is your name ‘Daddy’ or ‘Babe’?”
He was so obsessed with letters that he imagined the world as a book. When someone was in his way he would say, “Excuse me, that’s my page. Move.”
THREE YEAR OLD LIAM:
“Mommy, squares are called tiles and rectangles are called bricks, but what are circles called?”
“Mommy, I just can’t sleep because I need to poop and I need you to spell a word and I need to think about it.”
“Why isn’t ‘new’ spelled N-O-O since O-O makes the ooh sound?”
“Mommy, where is the S-H in lotion?”
“Hey Dad, what are those pictures called that float in the air while I sleep?” (dreams)
“Mommy, what’s an artichoke? Is it something you have to do at the doctor?”
“Mall is spelled M-A-L-L, but Molly in my class is spelled M-O-L-L-Y, so mall should be spelled M-O-L-L.”
FOUR YEAR OLD LIAM:
Liam: Mommy, come play trains with me.
Me: Not right now, I’m spending time with Jesus.
Liam: Ok, tell Jesus he can come too.
“I just can’t wait to grow up so I can be a taxi driver.”
“Mommy, for dinner can we have that dog food that people eat that looks like a popsicle?” (corn dog)
Me (as Asher is screaming hysterically): Liam, what did you do to your brother?
Liam: Nothing, Mom. I just broke his heart.
Long before I met Josh I dreamed about my son. He was standing on a curb and the sun was hitting his beautiful white blond hair. His hair was so curly and his name was Liam and I begged God to let it be. Here I am now, with my Liam Joshua, who I love with all of my heart. I treasure every day I get with him.
Liam drinking his first cup of coffee (mostly half and half)
After Liam was born we begged God to give him a brother. I prayed that this baby would be big and chunky and would love to eat and would not have colic. I told God that while He was making a colic-free baby for me, maybe He could just go ahead and make him a happy, easy baby as well. When I was pregnant with Asher we didn’t know what to name him, so we asked God to help us find the perfect name. God helped me find “Asher” which means happy and blessed. We loved it, but kept it a secret until he was born. We didn’t tell anybody, but one day while I was still pregnant my Mom said, “I just have to ask, is his name Asher? God told me his name is going to be Asher.” I couldn’t believe it. Sure enough, Asher weighed three pounds more at birth (even born at the exact same gestation) than his brother- 10 pounds 2 ounces. He is the most happy, easy baby. He lives up to his name. He will give me a kiss whenever I ask, no matter what he is in the middle of. He will stop his monster truck race, his train rescue mission, his task of complete house destruction to come kiss his Mommy. He says the sweetest things like, “Mommy booful hair!” and “Asher love, love, love Mommy.” He smells mostly like a toddler, with just a hint of that sweet baby smell still lingering. I love him so much. I’m so glad I have my boys and that they have each other.
*TRIGGER WARNING* This blog post includes my experiences through three very high risk pregnancies and discusses stillbirth. There are some sections specifically written for the women who have been given a poor or fatal prenatal diagnosis like we were. If you have a less serious high risk diagnosis, I suggest skipping over the “Go there once” and “Prepare” sections.
“So, there’s a problem with your blood work.”
And just like that my world changed forever.
Is there anything more primal than a parent’s fear when they realize their child is in danger? There is no terror quite like it. After two healthy, normal pregnancies I was sent flailing into a terrible new world when I found out at nine weeks that my third pregnancy would be an extremely risky one. My baby’s life was in danger and there was very little I could do to protect my child. Not only that, but I was also told that all of my future pregnancies would be high risk as well. It wasn’t just this baby who was in danger, but all of my future children as well. My lifelong dream of a big family seemed to evaporate in that moment. The fear and anxiety consumed me. It was always at the forefront of my mind. Suddenly the joy and innocence of pregnancy and child birth were gone and instead I was left feeling terrified, vulnerable, and broken. I couldn’t look forward to my due date with anticipation like before. I couldn’t make plans for this baby. When I thought about the coming months, I was flooded with a fear stronger than any I had ever felt in my life.
I am now on the other side of my three high risk pregnancies. As a quick recap, I was diagnosed with anti-Kell antibodies and my body attacked my babies in utero making the pregnancies very dangerous for them. My daughter, Lucy, was stillborn a few days shy of 20 weeks in my first high risk pregnancy. In my second high risk pregnancy after a lot of intervention, my daughter, Nora, was born healthy at 37 weeks 6 days. In my third high risk pregnancy, after lots of intervention like Nora, my son, Callum, was born at 34 weeks and 4 days and spent almost three weeks in the NICU. I have learned a lot from my journey through these pregnancies and would like to share some of the things that helped me survive them. Not only did I survive them, but I learned to find joy; to seek out and appreciate the joy, no matter how minuscule it was, and make it my own in the midst of hardship and fear. I believe you too can not only survive your high risk pregnancy, but find the joy and the beauty in it as well. Since every pregnancy is different, what helped me might not be beneficial to you so feel free to discard any suggestions that don’t feel right for you personally or might not fit your situation. If I could sit with you face to face over a cup of tea or coffee and share my experience with you, this would be my advice:
You’re going to feel what you’re going to feel
There are a lot of suggestions in this blog post but when it comes down to it, most of the time, you are going to feel how you feel. Your emotions are largely out of your control when you are pregnant, and especially when you find yourself stuck in the middle of a high risk pregnancy. Anger, sadness, elation, fear, depression, gratefulness, anxiety, hope. All normal. Try not to be hard on yourself for feeling how you feel. Emotions are just emotions and they are temporary. Emotions aren’t truth, thank goodness. It’s ok to feel how you feel.
Try not to compare this pregnancy with your previous pregnancies or with others’ pregnancies.
As a mother I have struggled not to compare my children with other children and not to compare myself with other mothers. In the end it only leads to feelings of inadequacy or pride depending on who came out on top as the “better mom” or “better kid.” The same goes for our pregnancies. We cannot expect every child to be exactly the same and we can’t expect every pregnancy to be the same. One of the biggest sources of pain for me was comparing my high risk pregnancies (especially the first one with Lucy) to my previous two normal pregnancies. They were such different experiences that I felt like I couldn’t help but constantly compare them. And when I compared my high risk pregnancy to my “normal” pregnancies it always felt like the high risk pregnancy came up lacking. I also struggled not to compare my difficult pregnancy with the experiences of the women around me who were having normal, easy pregnancies that ended with healthy babies. It wasn’t fair! Why did my baby have to suffer? And why did I have to go through so much agony when they got to live on blissfully enjoying their healthy pregnancies? The jealousy and rage could consume me if I dwelt on it too long or if I saw one of my pregnant friends complaining on Facebook about how hard it was to drink the glucose drink for her diabetes test or how hard it was when her healthy growing baby danced on her bladder at night. What helped me the most was remembering that each baby is unique and so is every pregnancy. Each one of my children is so different and they each have their own quirks, faults, strengths and unique personalities. Each pregnancy also has it’s own difficulties and it’s own beauties. This high risk pregnancy was part of my baby’s unique story and I decided that I was along for the ride, no matter how difficult it might be. Lucy’s story is her life story. Nora’s story is hers, and Callum’s is his. No matter how hard some of the details are, they are theirs and since I am their mom I accept and cherish every one of their unique stories. I don’t want some other lady’s pregnancy because that’s HER baby’s story. This is MY baby’s story and I will own it and appreciate it as their unique story. Protect this perspective as much as possible. For me, this meant unfollowing certain people on social media or staying off social media when I was feeling vulnerable or frustrated. I also did not attend stressful events like baby showers or go near the baby section of stores.
Research, get a second opinion, make a treatment plan.
When people are facing a new medical diagnosis they are often told by well meaning friends and family, “Don’t google it!” in an attempt to protect the person from unnecessary anxiety. But protecting your baby is much more important than protecting your emotions. I actually found that the more I understood about what was going on inside my body and the more I understood about the risks and treatment options, the more confident I felt. Google it and research your condition as much as possible. Educate yourself so that you can be an advocate for your child. You are the parent and you should play a vital role in your child’s medical treatment decisions. If you are facing a serious medical diagnosis, get a second opinion. Then make a treatment plan or course of action plan that you feel confident about. In my first high risk pregnancy I did not feel comfortable with my treatment plan and I didn’t get a second opinion because it would have meant traveling out of state for medical care. We were told that our hospital was exceptional by those around us so we trusted the MFMs’ treatment plan even though we felt uneasy about it. Our daughter died as a result. With my two subsequent pregnancies I spent hours researching, asking questions and educating myself about anti-Kell antibodies and the treatment options. We traveled out of state for the best medical care possible and I had a treatment plan that I felt very confident about. I knew that if we lost our baby, I would have done everything possible to save her and that brought me some level of peace. Both babies survived because they received the correct medical treatment.
Baby’s life over everything
This one is specifically for the women with very high risk pregnancies who don’t know if their baby will survive. I know that I don’t have to remind other moms of the importance of their baby’s life. It is the reason you are reading this blog post, it is at the heart of all you do. But I do just want to remind you not to let things that are temporary or less important prevent you from doing everything possible to save your baby. If I had a list of the things in my life from most important to least important, which of these things would be at the top? Job, finances, keeping regular weekly schedule, personal comfort, MFM’s feelings, older siblings comfort and regular schedule, the opinions of others, your baby’s life. Your baby’s life is at the top of the list. Do not let something that is lower on the list get in the way of doing everything possible to save your baby’s life. Even if you lose your baby in the end, it will be very important to know you did everything you could have to save your child. With my second high risk pregnancy I decided that I could not stay with the MFMs at UAB in Alabama who made mistakes with my previous baby so I drove 11 hours to Houston, Texas to be treated by Dr. Ken Moise. I felt a little irrational when I decided to go that far with my four year old in tow (on his birthday nonetheless!) It was inconvenient, we didn’t have the money (we are still trying to get out of debt three years later.) It was really hard to leave my oldest son, who was in kindergarten at the time and to leave my husband, and it was sad to have to quit my part time job, but when I walked into The Fetal Center for my first appointment I felt a great weight lifted off my chest and I knew my baby was in the best hands possible. It immediately alleviated a lot of the stress I had been carrying around and I felt peace knowing that I was doing everything in my power to save my baby Nora.
Grieving is normal, regardless of outcome.
Many things are lost in a high risk pregnancy and it is normal and appropriate to grieve for these things. Dead dreams, lost innocence, guilt, fear, painful interventions, inability to enjoy the pregnancy and difficulty accepting what is happening are just some of the things a pregnant woman might face during a high risk pregnancy. During all three of my high risk pregnancies I struggled at some point with heavy depression and anxiety. It wasn’t until my third one that I was able to accept the depression as part of the grieving process and I learned not to over analyze it. I knew that it would be temporary, just like the morning sickness, the back pain and the weekly MFM appointments. Let yourself grieve and mourn because you are going through a very real loss, even if you do end up with a healthy baby. The one thing you should not grieve is the loss of your baby because your baby is alive inside you right now. The time to mourn for your lost child is after you have lost your child, if that ever happens. Try not to mourn what isn’t lost yet.
Take lots of pictures
When I was pregnant with Lucy I was so terrified and often felt hopeless, so I purposefully did not take pictures of my growing baby bump. I thought it would protect me from more grief in the end if we lost her. I was wrong. After she died I desperately wished I had more pictures of my Lucy belly, since those were some of the only pictures I had of her while her heart was still beating. When I was pregnant with Nora I made sure to take lots of pictures and I posted them often on social media because I wanted to celebrate every week I got with her. I wanted to document her life and find joy in my growing belly and taking pictures was an exercise in hope for me. I knew that I would cherish the pictures whether she survived or not.
Go there, ONCE
The fear of losing my baby consumed me when I found out my baby could be in danger. There was a constant feeling of dread that weighed me down, like a heavy blanket. Over and over again I wondered what the future would look like. Would my baby survive? Would I survive if I lost my baby? What would I tell my older kids? Subconsciously I would fast forward and live out the worst case scenario in my head, over and over again. This is not healthy and it is not helpful to anyone, including your baby. I decided to go there in my mind, ONCE, and try to make any preparations needed just in case my worst fears came true. Then, I did not go there again. If I felt my mind slipping and I started imagining the worst, I would purposefully stop my thoughts and remind myself that I had already thought through that scenario and prepared for it as much as possible. There was no need to go there again. As a side note, I wasn’t always able to control my thoughts but I tried my best.
Prepare
As I just mentioned, it helped me to feel as prepared as possible for the worst, just in case it happened. I learned with Lucy, that no amount of bracing myself emotionally or trying not to get attached or not allowing myself to hope, could prepare me for the loss of my child. None of it helped ease my grief in the end. But there are some practical things that I wish I had done ahead of time that would have helped a little bit. When I was pregnant with my baby Nora the doctors gave her a 0% chance of surviving the pregnancy, so I felt that a stillbirth was imminent. I had her diaper bag already, since we had bought it for our baby Scarlet, but never used it in the end because the adoption fell through. I removed all of the cute things we had for Scarlet from the bag and packed the bag with tiny preemie hats, little bows and headbands, a couple of cute preemie outfits and a beautiful, soft pink blanket that I bought just for Nora. All of these things could have been used if Nora had been stillborn. The hats, bows, tiny outfits and blanket would have been used for pictures and then saved as precious momentos of our daughter. I purposefully did not pack pacifiers, diaper cream or other things needed for a living baby because I did not want to face those emotional triggers if we lost our daughter. We also picked a name out as soon as possible since we truly had no idea when we would need to name our daughter; 16 weeks? 20 weeks? 30 weeks? Having name ideas ready helped me have one less thing to worry about. We also were very honest with our two sons about everything throughout the pregnancy, which is a personal decision that might not be right for your family. For us, we knew it was best to tell the boys (3 and 5 at the time) at the very beginning of my pregnancy with Nora that Mommy was pregnant but we did not know if the baby would come live with us in our house, or go live in heaven with Lucy. We didn’t have the option of not telling them about the pregnancy because I had a permacath placed and two very obvious tubes coming out of my chest and we would be relocating for the pregnancy so it was impossible to hide. We told them that the baby would get sick in Mommy’s tummy and need medical help and we could pray that she would survive. But God was in control and we could always, always trust Him. They understood and handled everything better than expected, as children often do. Once I had the diaper bag packed, the name picked out and the boys informed, I felt as prepared as possible for the worst. Then I made an effort not to allow myself to go there again in my mind. I could remind myself that everything was ready in case we lost her and I put the idea of my baby dying far up on the shelf in the back of my mind, in a box, padlocked and shut away. I knew it was there, but I chose, day after day not to focus on it.
HOPE.
This one turned out to be one of the hardest for me, especially after losing Lucy during my first high risk pregnancy. We were given no hope with our baby Nora once we discovered that she had Kell positive blood and would be attacked in utero by my antibodies. The doctors said she would not survive. But I think hope is crucial to surviving and finding joy during a high risk pregnancy, no matter the odds. I learned with Lucy that whether you have false hope or you “prepare” yourself emotionally for the loss of your baby, if you do end up losing your baby the grief is still the same. Deciding not to have hope during your high risk pregnancy will not shield you from the pain of losing your child if your baby doesn’t make it. But hope during your pregnancy is life giving and I like to think that your baby feels that hope running through your veins into her little body. Yes we are afraid and we worry about our babies and we stress about the details of the disorder or we dread the possibilities, and maybe it isn’t possible to feel hopeful at the moment, but we can at least leave room in our hearts for hope. Even if it’s just a tiny space, leave some room for hope. One ounce of hope is more powerful than 10 tons of fear. You never know what miracles might happen. These are what my babies look like today, the ones who were given no hope of surviving, the ones we were told to terminate:
Focus on the next milestone
I quickly learned that if I looked ahead to my due date or afterwards, it only stressed me out because it felt like I was pulling down that padlocked box I had put up high on a shelf in the back of my mind. Instead, I focused on the next milestone and prayed about making it that far. Seeing a heartbeat on the early ultrasound, getting through the surgical placement of my port and permacath, making it to the second trimester, first MCA scan, getting far enough along for baby to have an IUT if necessary, the next MCA scan, the first IUT, making it to viability with a heartbeat (the biggest milestone for me!) 28 weeks, etc. Sometimes the goal was just to make it through the day. This helped me feel a little bit more in control to have small goals that felt attainable.
Get a home doppler.
This is another personal decision that might not be right for you, but it helped me a lot so I am including it. When I first got my home doppler I knew I had to set up some rules for myself before trying to use it because I knew it could end up creating unnecessary anxiety. I decided to only use it once a day at the most and to only try 15 minutes at a time to find baby’s heartbeat. I know I am not a medical professional and have not been trained to use the doppler so it was ok if I didn’t find baby’s heartbeat right away (especially early in the pregnancy.) I gave myself 15 minutes to find the heartbeat and if I didn’t find it within that time I would put my doppler away and do something else. Once I was out of the first trimester I was always able to find the heartbeat within ten minutes. I watched Youtube videos showing how to find baby’s heartbeat with a home doppler and that helped me figure out how to do it. Another rule I had was kick counts over doppler. If baby wasn’t meeting the kick count, but I could still find baby’s heartbeat, I still went in to have baby checked out. Just because I could hear baby’s heartbeat it didn’t mean baby wasn’t in danger. It just meant baby was alive. But the home doppler was a godsend in those irrational moments when I would suddenly feel panic wash over me and I would think, “My baby is dead I know it!” Just hearing the sound of my baby’s heartbeat would calm me down and I would sit listening to the thump, thump, thump until my own heart stopped racing. This was especially needed after having a procedure like the amniocentesis, surgical placement of my port or IUTs when I was very worried about baby’s well being. The purpose of the home doppler is to bring you peace and not to create more anxiety. It is also not meant to be used by you to diagnose your baby. If you start sensing that the doppler seems to be causing more stress than reassurance, sell it or give it away.
Ask your doctor about antidepressants or anti-anxiety medication
Again, this might not be for everyone, but if you are struggling with anxiety or depression during your pregnancy, talk to your doctor about your options regarding medication. I started taking Wellbutrin after Lucy died and my doctor and I agreed that it would be best for me to continue taking it during my pregnancy with Nora since it was such a high stress situation and I struggled with PTSD. The Wellbutrin is considered safe during pregnancy and breast feeding and is non-habit forming so I could stop it at any time in the future if I felt like I wanted to. The Wellbutrin helped keep my anxiety from growing to a point where it was out of my control. It also helped prevent postpartum depression after Nora was born. I took it throughout my year of breastfeeding Nora, through my pregnancy with Callum and during my year of breastfeeding Callum as well.
Find encouraging verses, pray them over your baby.
This is another personal one that might not feel normal for those who are not people of faith. But God is still God and He loves your baby deeply and He is always available to you, whether you pray on a regular basis or you never have in your life. It might flow easily for some and it might feel really awkward and forced for others. I encourage you to give it a try. Prayer is the single thing that helped me survive my high risk pregnancy the most and enabled me to find the joy along the way. There is something so purely peaceful and reassuring about entrusting your child back to God and saying, “Protect my baby. I trust you.” He is the one who has ultimate control over the situation. I found several Bible verses that encouraged me and I read them and prayed them over and over again. They were written in my medical journal that I took with me to every appointment so that when I was in the hospital or the MFM’s office and I opened my journal I would see the verses. I tried to read them at night before going to bed since the middle of the night is often when our fears loom larger than they are in the daylight. I found that just like Peter in the Bible, when he was walking on the water towards Jesus in the midst of a raging storm, if I looked at the giant waves threatening me, I would start to sink. But if I looked to Jesus and focused on His face and His promises, I was saved. Reassured. Lifted up out of the swirling waters that threatened to drown me. These are some of the verses that helped me the most during my high risk pregnancies (I’ve also included a prayer with each verse that you can pray if you aren’t sure what to say):
Zephanaiah 3:17 The Lord your God is in your midst, a mighty one who will save; He will rejoice over you with gladness; He will quiet you by His love; He will exult over you with loud singing.
Prayer: Lord, I know that you are in my midst; you are right here with me at this very moment. Quiet my anxious heart by your love. Fill me with your peace. You are the mighty one who will save. I pray that you save my baby. Strengthen my baby for this journey and let my baby feel your love and peace right now.
Isaiah 41:10 Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you. I will uphold you with my righteous right hand.
Prayer: God, you tell me not to fear but I am afraid and I’m worried about the future. Take my fear away and replace it with trust in you. Come and help me, strengthen me and uphold me with your hand. I need your reassurance. Thank you for loving me so much. Thank you for holding me up when I cannot stand on my own.
Isaiah 26:3 You keep him in perfect peace whose mind is stayed on you, because he trusts in you.
Prayer: When the waves are so big I feel I will drown, help me keep my eyes on you, draw me out of that mind space of fear and dread. As I look to you for comfort, overwhelm me with your perfect peace and help me focus my mind on you. Thank you for being bigger than any problem I have to face today.
Romans 15:13 May the God of hope fill you with all joy and peace as you trust in Him so that you may overflow with hope by the power of the Holy Spirit.
Prayer: Lord, you say you are the God of hope and I choose now to trust in you. I am trusting you with the things I cannot control. Nothing is out of your control and I feel the peace of handing it all over to you. Fill me with your hope and peace, OVERFLOW my heart with peace. Not only peace and hope, but also joy. Please help me to find joy today, no matter how impossible it feels at this moment.
Psalm 32:7-9 You are a hiding place for me; you preserve me from trouble; you surround me with shouts of deliverance. Selah. I will instruct you and teach you in the way you should go; I will counsel you with my eye upon you.
Prayer: God, I am scared about what will happen to my baby. I’m so anxious and worried about the future. You are my hiding place. When the storm of fear, worry and sadness swirls all around me I know I can find safety in you. Surround me and my baby with protection and safety. Preserve us from trouble. Give me wisdom along this journey. Help me make the right decisions regarding my baby’s medical care. Give my doctors wisdom and help them make the best decisions for me and my baby. You say you will counsel me with your eye upon me. Thank you for loving me so much that you keep close watch over me and my baby.
Psalm 18:31, 32 For who is God, but the Lord? And who is a rock, except our God? -the God who equipped me with strength and made my way blameless.
Prayer: Oh God, be my rock and my stability. My whole world feels shaky and terrifying right now as I wait and hope for my baby’s safety. You are my strong foundation and because of you, I will not be shaken. Thank you for being so strong and for being my anchor. Equip me with strength to get through today and tomorrow and the rest of this pregnancy. Equip my baby with strength right now, Lord, and wrap my baby in your protection.
Find the Joy
Even in the most terrible situations, even on the hardest days, there are small gifts of joy. Difficulty and sadness do not cancel out goodness and joy. If I have learned anything over the past few years it is that they can exist together. I realized during my high risk pregnancies that if I looked closely enough, nestled there amongst the fear, the pain, the uncertainty and disappointment, there was joy. Sometimes just a tiny drop, but still joy. One of the strongest emotions I dealt with during my pregnancies was dread. I had to endure painful procedures and awful side effects. I found myself dreading the procedures for weeks before they actually took place. I dreaded the surgical placement and removal of my port and permacath. I dreaded my plasmapheresis treatments and especially my weekly IVIG treatments that left me with debilitating migraines, vomiting, terrible muscle pain and weakness. Of all the procedures I experienced, the one I dreaded the most was the intrauterine blood transfusions the doctors had to routinely perform in order to keep my baby alive. One day before one of my IUTs with baby Nora I was so tired of the overwhelming dread that I prayed audaciously for God to not only help me endure the IUT but to actually help me find some enjoyment in it. The next day I purposefully searched for the gifts that I could enjoy, even though I was terrified for my baby and not looking forward to a needle being pushed through my body. “Ok, what can I appreciate about this?” I thought as I put on the thin hospital gown and waited for the nurse to come insert my IV. Well, there weren’t any little kids around who needed something from me. I could be alone (something I often coveted while at home on those overwhelmingly busy days) and I could nap if I wanted. As the day progressed I glimpsed little gifts from God, gifts that were always there but I hadn’t noticed them before. When the nurses lifted me and placed me on the operating table in the freezing operating room, I savored the heavy, warm blankets they draped over me. The warm air that blew under the blankets at the foot of the operating table felt amazing. When Nora’s ending hematocrit was called out to me after they got the blood to her I thanked God for the miracle of the IUT, that these doctors could fill my baby up with fresh, healthy blood even while she remained in utero. The sedation they gave me through my IV calmed my nerves and I appreciated it as I drifted off to take a much needed nap in the recovery room after the procedure was done. I awoke to the sound of my baby’s strong heartbeat thump thumping on the monitor and I thanked God for the best gift- a baby with a beating heart still inside me. Ever since that day when I dread something that I have to endure I pray and ask God to help me find some enjoyment in the experience and He always does. I also realized the one of the best ways to guarantee joy is to be thankful.
During my last pregnancy with my baby Callum I had to travel to Atlanta for my weekly (sometimes twice weekly) appointments which ended up being about 8 hours of driving in a day. It was exhausting and difficult to find childcare for my three kids during these appointments, not to mention all of the other medical procedures. Near the beginning of the pregnancy I wilted as I thought about making the trip week after week throughout my entire pregnancy. How could I do it? I often had to wake up at 3 or 4 am to get to my appointment on time (Atlanta was in a different time zone which didn’t help.) But I prayed and asked God to help me enjoy it somehow and I thanked Him for the hours I got to spend in my car. I decided to use the hours for things I couldn’t do when I was home with my one year old Nora and her big brothers. I prayed without interruption. I listened to podcasts and books on cd and 90s gangsta rap once I got close enough to Atlanta. I packed delicious food for the drive and enjoyed eating in peace (poor Dr. Trevett always wondered why Callum was so active during the ultrasounds and I’m pretty sure it had something to do with the four hours of eating I did leading up to the ultrasound.) I memorized verses and called and talked to friends. I started looking forward to my long drives and I realized that they refreshed me in a way. Once, I almost had to pull over on the side of the interstate because I was laughing so hard listening to David Sedaris’ Me Talk Pretty One Day (strongly recommend!) Tears of laughter streamed down my face, blurring my view of the road, and I realized that my heart was full of joy- right there in a dark and scary place in my life. Belly laughs right there amidst the back pain, headache and nausea while I drove to the ultrasound that would show whether my son was thriving or not. One of my favorite verses is Psalm 4:7 “You have put more joy in my heart than they have when their grain and wine abound.” My personal paraphrase of this verse for my high risk pregnancy was, “You have put more joy in my heart than they have when their pregnancies progress without any problems.” My true source of joy is God, not my circumstances, and nothing can take Him away from me. He can give me more joy in the middle of my high risk pregnancy than those who have easy circumstances. Ask God to give you joy right where you are. Look for the small pockets of joy and you will find them.
Distract Yourself
Once you have done all of the hard work of researching and making a solid treatment plan, working through your emotions and preparing for the future, the best thing you can do is distract yourself. You’ve done everything in your power to keep your baby safe and now you just have to wait without going crazy. Find ways to keep your mind busy and be kind to yourself…family outings, books, Netflix, podcasts, music, shopping, whatever it takes to help pass time. I listened to a daily podcast called Brant and Sherri podcast which was really silly but uplifting and it always helped me when I was feeling very anxious. I also listened to Podcasts during my IVIG treatments and encouraging songs helped too. I tried not to leave any empty space of quiet and inactivity because it was then that my mind would start spiraling.
You are equipped.
I firmly believe that if you are pregnant, you are already a parent. You don’t become a parent the day your child is born. You become a parent when you discover that your child is growing inside you and that is when you start making important decisions for your child. You make medical decisions regarding your prenatal care which affects your baby. You make decisions about what you will and won’t eat in order to keep your baby safe. You make decisions about genetic testing, birth plan, which pediatrician to use, etc. Not only are you a parent already, but I believe that God designed your specific baby for you and He has equipped you to be that child’s parent. He will give you the wisdom, the strength and the love you need to get through this pregnancy because that is what you need to do as this baby’s parent. Every parent is going to struggle in different ways along their parenting journey with each of their children, whether it’s during pregnancy, during the toddler years, teenage years or when their children are adults. Each one of my children needs certain things from me as their mother and many times it requires a dying to self on my part. Awkward confrontations with fellow parents, losing sleep during infant years, hours spent in the pediatrician’s office or staying up late waiting for your teenager to come home. Liam, Asher, Lucy, Nora and Callum have all needed me to parent them in certain ways. Actually, writing this blog post is one of the things I feel I need to do to “parent” Lucy the best way I know how. All of the stress, the agony and the pain of your high risk pregnancy? This is what this child needs from you as their mother. This is your sacrifice for your baby and you are equipped to do these things for your child.
I applaud you if you’ve made it all the way through this long blog post! To wrap things up, I want you to know that YOU CAN DO THIS. I have experienced outcomes on the worst and the best ends of the spectrum when it comes to high risk pregnancies. One pregnancy ended with the death of my child and two of my high risk pregnancies ended with healthy babies. Throughout these experiences God was faithful and He gave me what I needed at the time to get through it. I was not consumed and you will not be either. You are going to get through this.
Lamentations 3:22, 23 Because of the Lord’s great love we are not consumed, for His compassions never fail. They are new every morning; great is your faithfulness.
Every morning when you wake up God has new mercies waiting for you. That includes today, right now. And the best thing is that He has gone ahead of you in this day and in this pregnancy. He is there in the future waiting for you, ready to take care of you. None of this is out of His control. He will never leave you or your baby.
Deuteronomy 31:8 The Lord Himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged.
Last year at this time my newborn Callum was in the NICU and I was staying at the Ronald McDonald House with two year old Nora and my Mom (most of the time.) Since Callum’s first birthday I have been surprised and kind of annoyed by the waves of emotion I’ve been experiencing. The days he spent in the NICU replay vividly in my mind. That night when Josh had to drive Liam and Asher back to Tuscaloosa and I was left alone in the hospital recovering from my c-section and I hobbled down to the NICU at 2 am because I missed my baby so much. I couldn’t hold him yet, I couldn’t breastfeed him or have him in my room, but I COULD look at him, so when my thirst for him just could not wait another minute I walked all the way to the NICU without a wheelchair for the first time, alone. When I finally saw him the pride and goodness of my boy filled me up, but the nurse was visibly irritated by my presence. She side eyed me standing there next to his bassinet and I asked if he had taken anything by mouth. I had been waking up every three hours to pump and then getting up to wash all the pump parts and labeling the breast milk and sending it to the NICU, so I was proud of the breast milk that was available for him now. “Yeah, he had formula and did a pretty good job with the bottle.” “Oh, why wasn’t he given breast milk?” I asked. “I just reached in and grabbed whatever was there and it happened to be formula. He’s been crying for the past hour and I just got him to sleep. It’s not even feeding time so please don’t touch him. It’s not really time for you to be here.” she said. I was stunned into silence. Right after he was born my nurse had told me I could go down to the NICU and see my baby any time I wanted. But now, the one thing that brought me comfort, being able to physically be present with Callum and see him in the flesh, this nurse was taking it away from me? And he had been screaming for an entire hour without his Mommy. And the milk I had worked so hard to pump for him was left in the cooler. I didn’t say anything and stood there like a little kid who just got in trouble for coloring on the walls. Post pregnancy hormones coursed through me and I crumpled into tears and just sobbed, heaving and heaving. It was so embarrassing. Snot and tears trickled down my face and I stood rooted there, body aching from being on my feet for so long but I didn’t know what else to do. The nurse felt awkward and handed me a tissue. I wiped my face and hobbled out the door, down the hall, into the elevator back up to my hospital bed, crying the whole time. I know the nurse probably had a long day and was tired of taking care of somebody else’s screaming baby and wasn’t trying to hurt me, but I felt completely defeated. Now in hindsight I’m irritated with my self for not standing up to that nurse and explaining that if they had certain visiting hours for parents they should have told me, and please give him the breast milk I sent for him. Why do I even care? Callum is literally playing right in front of me right now and he is perfectly healthy and he’s with me ALL OF THE TIME. He has no recollection of that incident so why am I wasting my emotional energy on it right now?
I think having a baby in the NICU is hard for any mother but it’s even harder after you have lost a baby. It’s hard to be empty handed after giving birth, AGAIN. At the time I was in survival mode…pump, go visit Callum, drop off milk, breastfeed, go back to be with Nora, take care of Nora, eat, pump, head back to Callum, etc. (there was very little sleeping going on.) But now, in hindsight, I can make a bit more sense of how I felt. For some reason while Cal was in the NICU I felt like my parental rights were waived and the nurses were his parents, calling the shots. I had to be given permission to hold my own baby or to even be there by his side. I had to ask if I could touch him, feed him, hold him, change him. Most nurses were amazing and I was overcome with gratitude for these women who poured so much love into my baby. They even sent a card to our house after we got home with Callum congratulating us and thanking us for choosing them to care for Callum, which was so amazing. But my mind flits past that and settles on the one nurse who, after I had just met with a therapist about how to handle a preemie, broke all the “rules” I had just been taught and roughly picked up my baby, startling him into screams. She moved quickly and suddenly with him and was not gentle. He cried and I just watched because I wasn’t the parent in the NICU. But if my newborn had been in his little bassinet beside me in my hospital room recovering after the birth and a visitor handled my baby that way I would immediately take him out of her arms and not allow her to hold him anymore. The NICU was different, though, and I had to leave my son there all night with that nurse, and I felt sick leaving him there. I couldn’t sleep either because I worried about him. The next morning he was fine and I felt silly for my strong emotions and fears. But now these experiences replay in my head and I grieve again for the days I lost with Callum. I wonder if I should have been more assertive as his mother? Maybe I was too assertive? Since I felt like I wasn’t the parent, it was hard to bond with Callum like I should have in those early days and that is what grieves me the most, I think. I didn’t get to start truly bonding with him until he came home and I was his mother. People asked ME for permission to hold him and I had the choice not to leave him with anyone I felt uneasy about.
I remember how painful it was after Lucy died to hear women complain about how hard the NICU was. I equated the NICU with “live baby” and envied women who got to experience the NICU. In a way I felt like I was one of the lucky ones while Callum was in the NICU which gave me a weird sense that I was not allowed to grieve the losses I was experiencing. They were on such a smaller scale than the losses of the women who gave birth to still babies. But not grieving properly means the grief can fester and erupt later so now, one year later, I am grieving for the things I lost with Callum in his early days. Tomorrow will be one year since he was discharged from the NICU and I’m hoping this weight will lift and I can move on. I am so thankful to have him home now, healthy and thriving, and I revel in the fact that I get to be his Mommy, just me and no one else.
These last few weeks I have been getting through the days weighted down with stifling depression and grief. Sometimes it lets up, but since I lost Jude it has laid heavy on me. This last week I let myself be honest with God and I said, “You say you will be close to the broken hearted, you say you are the God of all comfort. You say you will heal me and let me feel your presence. Where are you? Come and be my comfort, my peace, my healing. Show me that you are telling the truth.”
Every time I have prayed this kind of prayer (which has been quite often since losing my Lucy) God answers me, and He almost always answers me through other people. This past week a woman from my church told me about her 14 week loss many years ago. She gave me this sweet little pin and said it was for me to remember baby Jude.
She told me it was hers after she lost her son and she used to keep it in her pocket for comfort and now she was giving it to me. It was so sweet. I have several things to remember Lucy by, but very few things for Jude, so this was just perfect. I felt so comforted that she would share this with me and let me share in her loss too. I also felt God’s love through her.
The next day a little girl from my church emailed me and asked if it would be ok if she and her friend made Lucy a blanket. I cried when I read it because I have been thinking lately how sad it is that I didn’t even get Lucy a pretty, girly blanket. I could have wrapped her in it and it would have been so special. It also meant so much to me that these little girls even remembered Lucy. Most people have moved on and rarely think about her, and I think about her every minute and cry for her every day. What a sweet expression of love for these girls to remember Lucy and to remember me. I cried again when Savannah and Briley brought over the pretty blanket they made for Lucy. I loved it. It even had her name on it. These little girls probably just wanted to do something nice for someone, and they probably have no idea how God used their kindness to encourage me this week. After they brought me the blanket I felt like God was saying, “See? I love you and you are important to me.” This blanket is now one of my most prized possessions. I will love it until the day I die. I can picture myself as an old, wrinkled lady holding this Lucy blanket and still feeling the comfort from it, still feeling the love of the body of Christ that it represents, even decades from now.
Sometimes the smallest act of kindness can mean the world to someone else. If you are a woman who has suffered a pregnancy loss and you know someone who has just lost a baby themselves, be brave and share your story with them. I have found the most comfort from women who have lost babies themselves and I always think, “What if she hadn’t said anything?” Thank you Savannah and Briley for listening to the Holy Spirit’s prompting and for making such a beautiful blanket for my Lucy. And thank you to every single woman who has ever been brave enough to tell me about the baby you have lost. You have comforted me and encouraged me so much and you inspire me to tell more people about my Lucy and Jude.
