Has He Redeemed It?

On this day nine years ago our baby’s heart stopped as we helplessly watched on ultrasound. It was by far the worst day of my life. A day that broke me to my core and divided my life into before and after.

Of all the days of my life so far, I have thought about February 8th the most. That day is buried deep inside me. Malignant. Permanent. I wish I could root it out and erase it forever. But despite the trauma and pain I felt on February 8th, 2013, there is this one part that I could never erase, even if I was given the choice. God’s presence. I have never felt the presence of God in my life like I did that day. He was there with me, standing in the room next to Josh. The doctors, nurses and family members came in and out but He never left. He was a physical presence in the room, holding me up and carrying me. And He repeated the same phrase to me over and over again, an audible voice in my head. I WILL REDEEM IT. The greatest loss of my life. My irreplaceable baby girl had been taken from me. And yet God promised me that He would redeem the loss. It felt impossible. But when He spoke the words to me again and again as I labored and birthed my lifeless girl, I knew He was speaking the truth. I trusted that He would fulfill His promise to me.

After we got home from the hospital I looked up the meaning of “redeem” and it means “to free from what distresses or harms, to change for the better, repair, restore, to exchange for something of value, to make good, to atone for, to make worthwhile.”

That is a big promise. Today, nine years later, these questions keep coming to mind-

Has He redeemed it like He said He would?

Did He keep His promise?

The answer is no and yes. During the last nine years God had redeemed far more than I ever thought possible. He has not restored Lucy to me, but many other “permanent” losses have been restored to me. God is keeping His promise and I know He will fulfill it completely once I get to heaven. So today, on Lucy’s ninth birthday I wanted to list nine things that God has redeemed since that day in 2013 when Lucy died.

  1. My dream of having a daughter on earth
  2. My pregnancy and childbirth experience
  3. Our dream of having a large family
  4. Our trust in doctors and the medical community
  5. My ability to advocate for what is right, even if it goes against the cultural norm
  6. My breastfeeding experience
  7. My ability to speak up for and protect my children
  8. My ability to celebrate and cherish other women’s pregnancies/babies
  9. Inner joy and peace

His gifts abound day after day. Even though God has done far more than we ever could have imagined, we still ache for the one thing He has not yet redeemed, our Lucy Dair. Our grief is palpable today as we remember our daughter and wonder who she would be at age nine. We remember how she was neglected by the medical team we entrusted her to. We work through forgiveness again and again. We ask God to restore what has been taken from us, and we wait for Him to fulfill His promise. And if I quiet myself and close my eyes I can feel His presence here with me in my grief. He still hasn’t left.

Isaiah 43:1-2 Fear not, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through the fire you shall not be burned, and the flame shall not consume you.

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Eight Years Without My Girl

On this day eight years ago we went in for our second intrauterine blood transfusion with our baby Lucy. Her first IUT went perfectly according to my MFMs. It was performed a little over a week earlier at 18 weeks gestation. But it didn’t really go perfectly, we know that now.

A few days ago I was reading over my medical records and the details break my heart. During the first IUT they discovered that Lucy’s hematocrit was only 6, which meant she was incredibly anemic. The doctors put donor blood into the cord and it went into the umbilical vein as they hoped. It is very hard to guide a needle through a woman’s uterus and into the baby’s umbilical vein, especially on a baby as tiny as Lucy. The procedure is much easier and safer when performed at later gestations. But that day during the first IUT, the MFMs were successful and hit the cord as planned.

I often wonder, what would have happened if the doctors had stopped then and performed another IUT two days later. That’s probably what Dr. Moise and Dr. Trevett would have done. Instead, my doctors injected Lucy with Lasix (this is something I never noticed in my medical records before now) and they went in with a second needle through my uterus into her abdomen. She had ascites (fluid building up) which was the beginning of fetal hydrops. The doctors injected more blood into the ascitic fluid in her abdomen, which would never get absorbed and would only further bloat her little body. Instead of following up and checking on Lucy in the days after the IUT, our doctors refused to check her anemia levels or do another IUT. They gave up on her well before she was dead.

And so, on this day in 2013, Josh and I went into the hospital in Birmingham and as they got me prepped for the second IUT, we watched on the ultrasound as Lucy’s heart gradually slowed down and stopped. I don’t know if there is any trauma quite like watching your own child’s heart slow down and stop beating. Lots of therapy, EMDR sessions and years of anti-anxiety meds later and I am still deeply traumatized by what happened on that day and the days leading up to and following her death.

Now, we have three living reminders of what my outcome with Lucy could have been with the right monitoring and the right treatment…a healthy daughter who would be turning eight this year. Her three younger siblings, Nora, Callum and August will get to celebrate healthy milestones and birthday parties this year. Lucy will not.

Callum, Nora and August

And so, on this eighth year after losing my daughter to HDFN, I will work hard to process my grief and forgive the doctors again for their carelessness and I will decide not to hold on to bitterness. There is so much freedom in choosing forgiveness over bitterness. I will continue trusting God with my life story and the lives of my children, even thought He let Lucy die. I will keep turning to Him for my peace, my joy and my purpose. I will celebrate the goodness that has come from Lucy’s life- the many babies who are alive today because of her, the realness of heaven and the joy I have set before me as I walk towards my real home, and the great work we have been able to accomplish so far through The Allo Hope Foundation.

We love you so much, Lucy Dair. Eight years closer to having you for eternity.

Lucy Dair Weathersby

In other news, our baby August is doing well and is already five months old. He brings us so much joy, especially on hard days like this.

Baby Brother Update- 17 and 18 Weeks

Our baby boy is still holding steady and doing well. At 17 weeks his MoM was 1.08. Yesterday at 18 weeks his highest MoM was 1.2 and there were no signs of extra fluid, dilated heart or echogenic bowels (possible signs of anemia.) He is growing beautifully and now weighs 9 ounces. He consistently has been measuring about a week or two ahead each time. I fall more in love with him at each ultrasound. What a blessing to get to see my baby grow week after week. He is always super active during his scans. This week the ultrasound tech told me he was the most active baby she had ever scanned. Here are a few pictures from his 18 week ultrasound:

This week has been difficult for me emotionally since this is the gestation that we found out Lucy was severely anemic. As I did during my pregnancies with Nora and Callum, I can’t help but compare this baby’s MoMs with Lucy’s MoM at 18 weeks. Here are all of their numbers together. Remember, 1.5 means the baby is anemic and needs an intrauterine blood transfusion. The closer to 1 the better.

All taken at 18 weeks gestation:

Lucy:     2.5             (no plasmapheresis, no IVIG)

Nora:     1.3-1.48     (plasmapheresis and IVIG)

Callum: 1.3              (plasmapheresis and IVIG)

Baby:     1.2            (plasmapheresis and IVIG)

All of the conversations I had with my MFMs in Alabama during my pregnancy with Lucy come back to me now- asking them to please do an early MCA scan to check Lucy for anemia, asking if we should start plasmapheresis and IVIG treatments, asking for more monitoring, etc. I think of the many times my concerns for Lucy were brushed off. The consequences of those doctors’ decisions still ripple through our family monthly, weekly, daily. Yet the doctors had no consequences and even more disappointing, they didn’t learn from their experience with Lucy. That large teaching hospital still has not updated their monitoring/treatment protocols and they do not offer plasmapheresis and IVIG to patients in similar situations. This is why I have to drive four hours each way just to get an ultrasound every week. Why, after seven years, has there been no improvement? Even after such a catastrophic loss? I think the answer is partially rooted in the fact that the people who made those decisions are not feeling the consequences of their choices. I am. Josh is. Liam, Asher, Nora and Callum are. Lucy got the brunt of it. The other patients who don’t get the best care are feeling the consequences. And it is hard for me to process that emotionally right now. Lucy was worth the extra effort it would have taken for the MFMs to monitor and treat her HDFN correctly. Her life was worth it. I wish they had felt the same way. This baby is getting all of the right care, the right monitoring and the right treatment from an MFM who sees how valuable his life is. It’s beautiful and it’s heartbreaking because Lucy deserved the same treatment that her siblings received and she deserved the same chance at life that they got.

This weekend we had some pretty bad storms in Alabama and there was a possibility of tornadoes in our area. We watched the weather man (James Spann) all day and were ready when the tornado siren went off. All the kids had their helmets on and were in the bathtub within a minute of the tornado warning being issued. Thankfully we were unaffected by the tornado and everyone is safe. James Spann kept repeating a phrase throughout the day that I have not been able to get out of my head. When there were signs of a rotation on radar but they weren’t 100% positive that there was a tornado down, they would still issue a tornado warning for the area. He said, “It’s always best to take the course of least regret.” The phrase resonates deeply with me. So often I see MFMs go the opposite route and provide the patient with the least amount of monitoring possible. But why? What if every single MFM decided to take the course of least regret? If the literature says to scan every 1-2 weeks, then do a scan every week to be safe. Check titers often, check on the baby often. If the MoMs are trending high, then rescan in a few days. Take the course of least regret because the stakes are so high. Lives hang in the balance and the consequences of the doctor’s monitoring and treatment decisions can affect patients for years and decades to come.

Next week will be hard emotionally for me as well since Lucy died at 19 weeks, so I am bracing myself for that. But I am so incredibly thankful for my healthy boy and my amazing doctor who provides such thorough care for us. He leaves no room for regret, regardless of the outcome of this pregnancy.

We checked my titer again this week and unfortunately it has gone from 128 a couple of weeks ago to 512. I will be doing three rounds of plasmapheresis next week in Atlanta and a double loading dose of IVIG right afterwards to try and bring my titer down. Our goal is to help this baby make it as far as possible before needing an IUT. I’m really hoping we can get to viability (22-25 weeks) before needing intervention. Please continue praying for our boy and for our care providers. I hope everyone is staying safe. I will update the blog after next week’s ultrasound.

 

Lucy’s Stocking

Lucy's stocking

I was supposed to write this post several days ago to share The Allo Hope Foundation’s very first fundraiser ever, “Lucy’s Stocking.” Of course I put it off until the last minute. Today is Giving Tuesday and Facebook will match any donation sent to the Allo Hope Foundation on Facebook. But instead of focusing on asking for your donations, I just need to write about the incredible support I have been shown today.

I have actually been in tears on and off all day for two very different reasons. The first reason is that so many friends, family members, antibody moms and even strangers have shared our fundraiser and contributed to “Lucy’s Stocking.” It encourages me to tears because so much of this journey over the past few years has felt so isolating. Going through my pregnancy with Lucy and trying to learn how to advocate for her on my own was extremely difficult and isolating. The hard work of grieving a lost child is also something only I can do myself. Neither Josh nor my friends/family can do it for me. The loneliness of missing her in all the quiet moments that nobody else notices is overwhelming sometimes. It feels like nobody else sees the empty places where she should be.

Maternal alloimmunization is a disorder that is often overlooked and rarely noticed by the medical community, as many of you already know. There is a relative lack of funding and research compared to more well-known medical conditions. Even our babies who are attacked by our antibodies and struggling with HDFN are literally out of sight while battling for their lives in utero. And it feels like our babies aren’t always “seen” by our doctors either, especially when we have to convince them to provide the right medical treatment for our children.

Trying to help other families struggling with alloimmunization and HDFN can also feel isolating. Of course there are many other women who are helping too, but it’s devastating when I try my best to help another woman keep her baby safe and her baby dies. I grieve for her baby mostly behind the scenes as I go about my day, cooking dinner, wiping messy faces, preparing an English lesson but still mourning for this little life that has been cut short. So, in many ways this journey has felt like an isolating one, and sometimes the process of starting this nonprofit organization has felt like an uphill battle. Time and time again I have thought, “I am not equipped for this, I have too many faults, I am inadequate.”

But today I have seen the flood of support from so many people through our first fundraiser and it feels like I’m not actually isolated at all. I’m supported, I’m encouraged and I’m not alone in this fight for better medical care. Maybe our babies really are seen and the value of their lives is not missed. Thank you to everyone who has shown up for us and reminded us that we are not alone. We are not isolated or overlooked.

The other reason I have been crying on and off today is because I got yet another message this morning from someone I care deeply about that said, “There was no heartbeat on the ultrasound today.” Devastated. Flooded with grief for this family. Still in disbelief. Motivated to keep working and growing The Allo Hope Foundation so this doesn’t happen again.

If you would like to read about Lucy’s Stocking, you can find our fundraiser on Facebook at: https://www.facebook.com/AlloHopeFoundation/posts/123222952468227 or if you aren’t on Facebook you can read about our fundraiser on Mighty Cause here: https://givingtuesday.mightycause.com/story/Allohope

Or if you want to donate directly you can do that here:

https://givingtuesday.mightycause.com/forms/Allohope?embed=donation_widget

 

I Miss My Sister

Nora has become obsessed with her sister lately. It has taken me completely off guard. I don’t really know how to parent her in this situation since it’s all new to me. Nora wasn’t around when I was pregnant with Lucy and she wasn’t here when Lucy died or afterwards when I was paralyzed by my grief. I don’t think she has ever seen me cry over Lucy since I have more control over my tears now and when I lose control I can still hide it from her. Ever since Nora was born I’ve carried this terrible ache inside for her to know her sister Lucy. I have grieved for Nora’s loss many times, but I have been very intentional about not projecting that grief onto Nora. It’s not Nora’s grief, it’s mine. So I don’t ever say things like, “You would have a six year old sister now if Lucy were alive.” Or, “I wish your sister was here so you could play with her.” If anything I have tried to lessen the loss for Nora by avoiding the topic altogether and never showing her my grief over the loss of her relationship with her sister.

Something incredible has been happening though. As Nora grows and understands more about the world around her, she is becoming aware of her sister’s absence all on her own. I don’t know how or why but her grief over the loss of Lucy has been growing and intensifying. There’s something beautiful about the fact that a four year old can understand the magnitude of the loss of her sister who was stillborn before she even existed. It’s like she knows what she is missing. She often cries in bed at night for her sister Lucy. Sometimes she cries in the middle of the day and nothing I say can soothe her. Often, if she plays with an older girl around Lucy’s age she will come home and cry saying, “I miss my sista Lucy. When can I go play with her?” Nora sometimes asks what kind of toys Lucy has and she asks if she can play with her toys too.

I have tried telling her how happy Lucy is in heaven and that we can see her one day but that often leads to more anxiety because Nora knows she has to die in order to be with Lucy. I’ve tried telling her how fun Callum and her big brothers are and even though she does enjoy her brothers so much, it doesn’t make her loss any less painful. She says she just misses Lucy, not them. I’ve even tried asking her if she maybe wants a baby sister and she says, “No, I want my big sister Lucy.” The other day as I was trying to soothe Nora while she cried, I suddenly realized that I was using all of the typical “encouragements” that others used on me when I was in deep mourning, even though I know they don’t work. “Be thankful you have two healthy kids.” Yes, but they aren’t Lucy. “She is safe and happy in heaven.” Yes but I want my baby with me HERE. “Maybe you can have more kids.” Yes, but they won’t replace the one who is missing. No one can. Why do I think these weak reassurances will work on my daughter when they never work on anyone missing a person they love? I use these phrases because I don’t know what else to do and I want to fix it. I want to lessen Nora’s pain somehow. And this is exactly why other people have used these phrases on me in the past. They just wanted to comfort and lessen my pain.

Yesterday as we were driving Nora asked, “Where was I when you were a little girl?” and I said, “You weren’t alive yet. That was long before you were born.” “Oh, so I was stillborn?” she asks innocently. I catch my breath. How does she know that word? I have never told her what that word means. “No, you weren’t stillborn.” She furrows her brow, “But you said I wasn’t alive so that means I was stillborn.” Wow. She is incredible and I have no idea how to be her mother sometimes. I don’t know how to lessen her pain or fill the gap that her big sister left behind. No one can besides God. But I trust that He can redeem Nora’s losses just like He promises to redeem mine.

I am reminded of the many ripples of destruction that continue to crash through our lives and our family since Lucy died. How many other families are experiencing ripples from their own tragedies that I can’t see? Nora’s grief has humbled me and reminded me to be kind and loving to those around me. Just because their loss or their trauma was a long time ago it doesn’t mean they aren’t suffering from the ripples created by that event. Just because I can’t see the suffering on the surface it does’t mean they aren’t struggling. My heart has been softened towards those on the outside of grief too, who don’t know what to say but desperately want to lessen the pain of others. Maybe their phrases are empty words that don’t heal, but they are just trying their best like I am when Nora is crying for her sister and all I want is to take away her suffering.

So, my daughters have humbled me and challenged me to love others better and to forgive when the words aren’t perfect, to give others the benefit of the doubt and to remember that God alone can redeem our deepest losses.

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2,191 Days

It has been six years since Lucy’s heart stopped. I have lived 2,191 days without my daughter. 2,191 times my eyelids flickered opened and I awoke to a world without Lucy in it. And I got up out of bed and I made it through the day. Over two thousand times. In all of those days I have missed small and intimate moments with her, mundane moments that we parents often take for granted, and important milestones. All the baby snuggles, reaching for her hand in a parking lot, painting tiny toenails and washing her hair in the bath. The first words and the Halloween costumes and teaching her how to read. Birthdays and Christmases and bedtime stories. I even miss potty training and disciplining her and taking her to the pediatrician for her vaccinations. The overwhelming weight of all the things we have missed while living our lives without Lucy seems like it’s too much to bear sometimes. At the moment my grief is so fresh and raw, it seems impossible that it has been six whole years since she died. The persistence of my grief is a testament to the depth of my love for her. Oh how I ache for my little girl. But the grief should not come as a surprise. Just as it is good and right to enjoy and celebrate the children we have with us, it is good and right to miss and mourn the children that wait for us in heaven. Liam just turned ten years old yesterday and we celebrated his life. We gave him presents and made his favorite breakfast and told him we loved him. We didn’t say, “Oh, that was ten years ago. I already celebrated him back then and I’ve moved on by now.” We acknowledge the joy of his life and the gift of having him here with us. Conversely, we grieve the absence of our precious daughter, Lucy, and we acknowledge the depth of our pain and how much we miss her.

In a sermon preached only days after the 9/11 attacks in New York City, Timothy Keller said that there are two mistakes people can make in the face of tragedy, suffering and death and they are warned against in 1 Thessalonians. The first mistake is to try to avoid grief and weeping. The second mistake is to grieve as those who have no hope. He says:

 “The Bible indicates that the love and hope of God and the love and hope that comes from one another has to be rubbed into our grief, the way you have to rub salt into meat in warm climates where it will go bad. Your grief is either going to make you bleaker and weaker or it could make you far more wise and good and tender, depending on what you rub into it, what you put in. And that’s what we’re here to do. We’re here not just to weep but to rub into our weeping, hope and love.”

So today I acknowledge my profound grief for my daughter, Lucy Dair. Her name means light, and when her heart stopped, a light went out inside me that will not be lit again until I am in heaven. I feel her absence every minute of every day. We all love you so much Lucy.

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Original photo by Wright Media, edited with permission by Siobhan Fisher Photography ❤

But I do not grieve as one who has no hope. I know that, just as He promised, God will redeem every one of the 2,191 days we have missed with Lucy, and He will redeem all of the missed days to come. Today, as always, I will continue to rub hope and love deep into my wounds. Lucy left me with many gifts that I have slowly been unwrapping over these past six years since she left. The way I look forward to heaven now is a gift. My ability to appreciate life in a way I never have before is a gift. The way my heart has been softened towards others who are hurting is a gift. Even the suffering itself can be viewed as a gift because it teaches us things no one else can teach us.

Sheryl Sandberg wrote a book called Option B after her husband died unexpectedly and she was left to raise her two young children on her own. In one section of her book she writes about Joe Kasper, a man who lost his son but then found healing when he realized that his actions could be a part of his son’s legacy.

“While studying for his Master’s degree, Joe created a therapeutic process called ‘co-destiny,’ which encourages bereaved parents to view their child’s life in a larger framework so that death does not become the end of the story. Parents who seek purpose and meaning from their tragedies can go on to do good, which then becomes part of their child’s impact on the world. As Joe explained, ‘I realized that my destiny was to live my life in a way that would make my son proud. The awareness that I could add goodness to my son’s life by doing good in his name motivates me to this day.’ It’s not surprising that so many trauma survivors end up helping others overcome the adversity that they have faced themselves. ‘There is nothing more gratifying than helping someone else escape this quagmire of despair,’ Joe told us. ‘I know this passion of mine is an area of personal growth related to my trauma. Helping others grow from their trauma reflects back to my son’s life.’ After undergoing a hardship, people have new knowledge to offer those who go through similar experiences. It is a unique source of meaning because it does not just give our lives purpose- it gives our suffering purpose. People help where they’ve been hurt so that their wounds are not in vain.”

I can attest to the healing power of adding goodness to Lucy’s life by doing good in her name. This is part of the rubbing in of love and hope. Very few things in my life are as gratifying as helping other women who are dealing with a high risk pregnancy or the loss of a baby. My trauma has given me unique experiences and insights that I can share with others. I’ve been able to learn the ins and outs of this high risk pregnancy disorder and I now have the tools to help other women advocate for the right medical care during their pregnancies.

I have also been on the receiving end of this hope sharing. When Lucy was stillborn I was in the hospital for two days and two nights. While I was there I encountered many doctors and nurses who were kind but I only remember one woman who was able to comfort me with her words. A nurse told me she had suffered a miscarriage in the past and was devastated by it. She told me about her rainbow baby who had brought her so much healing. “You just have to try again, honey. You just have to get back up on that horse and try again.” Obviously, her words weren’t perfect because I couldn’t just “get back up on that horse and try again” like she had said since my next baby would also face anti-Kell antibodies like Lucy. But her act of sharing even just that tiny glimpse into her own pain, and her acknowledgement of my desperate desire for a living baby gave me hope. It encouraged me to hear about someone else losing a baby and then finding hope and trying again afterwards. Since then many, many people have reached out and shared their own stories of suffering with me and those are the people who have made a huge impact on my life. Our Support for Antibodies in Pregnancy group on Facebook is full of women who have been through traumatic losses and high risk pregnancies and they use their suffering to lift other women up. We share what we have learned from our own pregnancies and we help others protect their babies. In fact, if I had not found the women in the group I don’t think my own children, Nora and Callum, would be alive today. I was not a part of the group when I was pregnant with Lucy so I had to figure out that pregnancy on my own. What a difference these women made in my life by sharing what they gained from their trauma.

My friend, Melanie DeSimone, lost her son, Dominic, several years ago and since then she has started a blog, The Life I Didn’t Choose, and a Facebook group for bereaved parents, Heartache and Hope: Life After Losing a Child. She has used her suffering to encourage and support other families going through similar losses. The wisdom and empathy that Melanie shares with thousands of people daily is only available to her because of Dominic, and because Melanie has chosen to rub love and hope into her grief.

For those of you who have suffered a loss or gone through a traumatic event or faced discrimination, what do you know now that you didn’t know before your crisis? How has your perspective changed? These are your gifts to share with the world, to bring purpose to your suffering and to help others who are facing a similar tragedy. And I can tell you from personal experience that when you reach out and use these gifts to help others, it will end up benefiting you more than you can imagine.

Lucy’s life and legacy live on through the families who have been changed by her story.  Here are some of the gorgeous babies from the past year or two who have been helped because of Lucy’s story. Their parents are some of the bravest people I know. I cannot describe how much joy and fulfillment these babies bring to my life and I feel honored to be a part of their stories. Happy birthday, Lucy. Some of these babies would not be here if it weren’t for you. I hope you can see what a difference your life has made in the world. I am so proud to be your Mommy.

Maggie

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Bay

 Oliver

Jake

Hayes

Cameron

Alex Ray

Francesca and Vincenza aka Frankie and Vinnie

Mila

Cole

Nolan

 Harris

Paxon, Madon and baby sibling on the way

Brianna Anne

Kolt

Eliza

Rainbow baby girl Stevens on the way

Piper

Evangeline

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Nusayba

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Uwais

Rainbow baby girl Stacey

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Baby Allen

Meadow Mae

Ezra (baby sibling on the way)

Mattea

Crosby

Anysia

Grace

Emmi

Zylas

Baby Rusch #3

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Cameela

Laney Maree

And beautiful Liliana, who, like Lucy, would probably be alive today if she had received the right care.

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Liliana

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Liliana

Hard Conversations

Our little rainbow baby, Nora, is now almost three and a half years old. She is in that shifty space between baby and kid where one minute she is using words like “consequence” and “incredible” in complex sentences and the next minute she is shouting for Mommy to come wipe her butt after a good poo. It’s amazing to watch her grow and transform into the person she will be. She is so different from her brothers; another species entirely. At her age they were reading independently and constantly trying to run over the edges of tall things. The boys would spend hours every day constructing train tracks and creating deadly train crashes along the way. Nora doesn’t care about reading because she can just make up the story herself if there isn’t an adult around to read it to her. She spends most of her day thinking about princesses, making up dances and songs, and caring for her baby dolls. She loves being in charge, taking care of people’s needs and feeling romantic.

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Parenting a three year old is both fun and exhausting because your child can now verbalize her thoughts about the world which means there is an endless stream of words and questions flowing out of her mouth. We laugh every day at something hilarious and ridiculous that Nora has said and we die from the cuteness too. She recently started telling us that she loves us and she uses it to her advantage when she doesn’t like our decision about something. “Nora, I have to go to work now.” says her Daddy. “But Daddy, you can’t go to work because I love you.” “Nora, it’s time to take a nap.” “But, I love you so much. I can’t take a nap.”

Nora is also very aware that she has a sister named Lucy who isn’t here with us but is still a very important part of our family. For Liam and Asher it comes naturally to include Lucy in most things, which still amazes me and feels like balm to my heart. When counting how many girls vs. boys in the family, Lucy is always counted. For projects at school they include Lucy in their family description most of the time. At Christmas we always hang Lucy’s golden stocking right there where it should be between Asher and Nora’s stockings. And our family ornaments always include Lucy’s name. But this Christmas Nora asked a lot of new questions that were painful and difficult to answer. “But how is Lucy going to open her stocking on Christmas if it is here? Will she be here in our house on Christmas? I want her to have her stocking. Can we give it to her?” And none of my explanations felt adequate. Recently, Nora noticed a little drawing taped on the wall in her room. It has been there ever since she was a newborn. Soon after we brought her home from Houston, Asher drew a special family picture for Nora and insisted we tape it on her wall for her to look at.

It includes Daddy, Mommy, Liam and Asher holding his baby Nora. Up in the sky, is Lucy, looking out of the window of her mansion in heaven, smiling. It’s beautiful and heartbreaking. Lucy is included as a natural part of our family but the separation is clearly illustrated. All of us down here together. Lucy up there in heaven. So Nora asked about the picture on the wall and I pointed everyone out and explained it to her and she loved it. But of course, she had lots of hard questions.

Nora notices more and more how the big brothers play together so effortlessly without her in the scenario. I mean, it only makes sense that she would not want to be part of their conversations about Fortnite or the imaginary Civil War battle they are meticulously planning out, casualties and all. But she can’t understand why they don’t want to play Barbie princesses with her or act out the Cinderella ball scene over and over again. In those moments I ache so deeply for Nora to have her five year old sister here with her. I can see the hours of fun they would have playing together every day, an easy friendship built into the family. My whole childhood was a never ending play date with my sister Kristin, who is 22 months younger than me. We didn’t even call each other by name. We called each other “friend” because we somehow knew that being friends was extra special. A person doesn’t have a choice about who her sister is, but she does get to choose who her friends are. And Kristin and I wanted everyone to know that we had chosen to be friends. We weren’t just sisters. Nora would LOVE to have a five year old sister friend, even for just one day. How many days of joy and friendship are missed? Years of friendship gone. A lifetime with her sister gone. And it’s hard for me not to let the bitterness take over as I think about the doctors at UAB with their careless mistakes and I want to ask them, “Do you know how many years of friendship have been lost because of your pride? Nora’s only sister, dead, because you couldn’t take ten minutes out of your busy day to check Lucy for anemia when I begged you to.” I forgive the doctors at UAB multiple times a week, sometimes multiple times a day, and I ask God to give me compassion for them. Thank God for the power He gives me to forgive and to love the people who are hardest to love. Without Him I would be drowning in my bitterness.

This past week Nora randomly said to me, “Mommy, I really miss Lucy and I really want her to come here.” It stopped me in my tracks. “I know, I miss her too and I really wish she could be here too.” I said. “But I want her to be here in my house and play with me. And I miss Lucy and you miss Lucy but Callum doesn’t miss her and Asher doesn’t miss her and Liam doesn’t miss her and Daddy doesn’t miss her like we do.” she said. I knew what she was trying to express, that the boys don’t miss Lucy like we do because they have each other. I told her that the boys do miss Lucy as much as we do, except for maybe Callum because he doesn’t know about her yet. “Why doesn’t Callum know about her?” she asked. “Well, he’s too little to understand and it’s hard to explain it to him, but when he gets older he will know who Lucy is.” “Will she come here tomorrow? To our house? Or maybe the next day?” Nora asks hopefully, and my heart sinks. This is the worst. “No, she’s not coming here.” “But maybe she can come later? To our house? And she can stay at our house.” Nora pushes. “I’m sorry baby, but she can’t come to our house because she is in heaven. But we can see her when we go to heaven.” I say, trying to steady my voice. “Oh!” she says, “so how do we go there? Where do we go through? Where’s the door?” “Well, we can’t go there until after we die.” I say slowly. Nora instantly looks horrified. “I don’t want to die!” Oh, now we are spiraling into uncharted territory. I don’t know what to say to my sweet little three year about the horrors of this world we live in. But I have to tell the truth so I say, “Everyone is going to die one day, but if you love God, after you die you can live in heaven forever. And it is going to be so wonderful.” “But I don’t want to die.” she repeats, looking up at me with her giant worried eyes. “I know, and you don’t have to worry about that at all right now.” I say, not exactly sure how to reassure her. “Will Lucy show me her toys when I get to heaven?” she asks and I feel relieved that we are now onto toys as opposed to inescapable death. Finally she lets me change the subject but I am shaken, and the rest of the day I feel desperately sad.

A couple days later as I was getting Nora ready for preschool she nonchalantly asked me, “When am I going to die?” and here we go again. Even though Nora’s questions are heartbreaking for me and difficult to answer, they remind me of how thankful I am that I do have the answers, even if they might be too complex for Nora to understand at the moment.

People die and kids grow up and everything changes but God remains the same. He never changes. He is constant and trustworthy and His love for us never changes. He is our anchor. He even conquered death so really, for those who know God, death is only moving from this place to our real home. Lucy is home and I wonder if she asks God, “Can Nora come to our house and stay? Will she come here tomorrow? To our house? Or maybe the next day?” And He says that the wait will feel like the blink of an eye and before Lucy knows it her family will be home forever. Together. And the most beautiful, comforting thing is that God does not leave us here to flounder in grief while we wait. He is here with us, filling in the gaps where we ache, where dreams are unfulfilled and people are missing. God can be our fulfillment, our strength, our peace, our joy. So maybe Nora has to wait until heaven to have a sister, but she can have other meaningful relationships here and she can have peace, joy and fulfillment through the God who never leaves or changes.

Zephaniah 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.

Romans 8:38-39 For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

Deuteronomy 33:27 The eternal God is your refuge, and underneath are the everlasting arms.

Reliving the NICU

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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.

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Finding Joy in My High Risk Pregnancy

*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, guilt. 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:

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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. 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.

Silently Suffering After Pregnancy Loss

I’m so proud of my friend, Cassandra Blomberg, for being brave enough to share her personal story of loss and to help break the silence surrounding miscarriage and stillbirth. Similar to the way I lost Lucy, Cassandra lost her daughter, Violet, to anti-c antibodies in her first sensitized pregnancy. She and I had miscarriages around the same time after we lost our daughters. We also both had our rainbow babies around the same time and they survived because of the same treatments (plasmapheresis and IVIG.) Cassandra was the only person I knew of who ever tried to have a second baby using plasmapheresis and IVIG. Her healthy baby Beckett inspired us and gave us the courage to try for our baby Callum (thank you Beckett!)  Our society desperately needs to change how we view and talk about miscarriage and stillbirth. Here is Cassandra’s Tedx Talk “Silently Suffering After Pregnancy Loss”: