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. 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 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.

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”:

 

FIVE

It is hard to believe that my daughter would be turning five this year if she had been born alive. How did I survive five whole years with this ache inside my chest? I wonder who she would be today. Would she be reading super early like her brothers or would she show no interest in letters like her sister? Would she be doing gymnastics like I was at five? Would she have curly hair like Nora? Would Lucy be stubborn and independent like I was as a kid? Or would she be a rule follower like her Daddy? Would she be a tomboy or would she prefer Barbies? I wonder what her voice sounds like. I wonder who her little friends would be. Oh I miss my baby so much.

I’ve been telling Nora about her big sister lately and she accepts it all as completely normal, like everyone has a sister in heaven. The other day I got my Lucy box down and let Nora look through it. She loved seeing her sister’s pillow, dress, hat, blanket, pictures and even the many cards we have saved from our friends and family.

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I know that right now Nora doesn’t really understand what it means to lose a sister, but one day when she is older she will grieve the loss of that special relationship. There is still so much heartache to come.

Over the past couple of weeks I’ve been reading back in my journal from the days leading up to Lucy’s death. I can tell from the buoyancy of my writing that I was a different person then. Cheerful and optimistic. Sure that God would save her if I had enough faith. Then at the end of my 17th week of pregnancy (or possibly 18th week since they changed her due date a couple times) I wrote:

My baby might die tomorrow. She has to have an intrauterine blood transfusion at 17 weeks 6 days. I sobbed in the shower tonight crying out to God for her life. “I want to keep her! I want to keep her!” I cried over and over again. God said, “Whatever happens, you have her for eternity. You have her for eternity. Trust me.” And these thoughts have calmed my spirit and given me peace:

*I have her for eternity.

*I will give her life for God’s glory if He asks.

*She is HIS anyway.

*Abraham gave his son to God. God gave His Son for us. I will hold my daughter’s life with an open hand.

*My life’s purpose is to glorify God, not to keep my daughter.

*He will sustain me.

*I will be strong and courageous.

I remember how desperately I cried out to God that night, begging Him to let me keep Lucy. I think I knew then that God was not going to save her. Even though she survived the IUT the following day, she died eight days later while we watched on ultrasound. But that night when I begged for her life I sensed God asking me to place her in his arms. I look at those truths I wrote down five years ago and they give me courage to continue trusting God with this great loss. They give me courage to face the future without her. All of the days to come, without my sweet girl. I can do this, no matter how much I hate it. If I could be brave enough then to give my girl back to God, I can be brave today too. Because the truth is, it still takes an incredible amount of might to live each day without my child. It takes courage and grit and forgiveness and a whole lot of energy.

Three days before Lucy died I wrote this quote down by Charles Spurgeon:

Don’t you know that day dawns after night, showers displace drought, and spring and summer follow winter? Then, have hope! Hope forever, for God will not fail you.

Hope forever. As the days and the weeks and the years pass, more and more light slowly emerges. The dawn after our night. Today I can feel joy and contentment and I can sing again and I laugh freely most of the time. I go days and sometimes weeks without crying. None of these things seemed possible five years ago when I watched my baby’s heart stop and my world splintered. But God has been true to His word. When He promised me five years ago on that rainy, dreary day in that horrible hospital room, “I WILL REDEEM IT” He was telling the truth. He has been persistent in His quest to redeem the many things that died on February 8th, 2013 along with Lucy. And one day when I arrive in heaven, He will redeem the loss of my daughter and all of the missed moments with her here on earth. Yes, I will hope forever, for God will not fail me.

Three days after Lucy died when I was at one of the lowest points of my life I wrote this simple journal entry:

I TRUST HIM.

I trust you, Lord. Show me your goodness. Show me your hope. Show me what you are going to do with this sacrifice of pain and loss. Make her little life worth something….something so beautiful.

I TRUST YOU.

And now I get to show you the goodness and the hope, the beautiful thing God is doing with Lucy’s life. Because of my experience with her and because of this blog, I get to connect with parents from all over the world who are dealing with a sensitized pregnancy and help them advocate for the right care. You know, I invest in each one of my children’s lives daily; Liam, Asher, Nora and Callum. I don’t get to invest in Lucy’s life, so instead, I invest the time I would be spending with Lucy in these babies and their parents. My Facebook feed is full of pregnant bellies and ultrasound updates and newborn babies and pregnancy announcements…all the things that used to trigger my PTSD and send me spiraling. Now they are some of my greatest joys in life. Here are some of the beautiful babies who were impacted by Lucy and me over the past year. (There were so many babies that I couldn’t include each one’s story so I just included a couple and then the names and pictures of the rest of them.)

 “My Kell baby Nancy, nearly 6 months old. She wouldn’t be here now if it wasn’t for your blog and the invaluable help of the ISO moms group. The knowledge I gained from you helped me to ensure she had the best care, if I hadn’t fought so hard for more regular MCA scans she would have been so anaemic we would’ve lost her. I’m eternally grateful. Thinking of you and your precious Lucy xxx ❤️”

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“After a shocking loss of our daughter in 2016 I was told I should never get pregnant again because my antibodies would cause another loss. Long story short, I found Bethany’s blog and the ISO group which gave me hope again for future children. My rainbow baby Cameron was born this past summer and words can not describe how grateful I am for Bethany sharing Lucy’s story. If it wasn’t for her my son would not be here today. ❤️”
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Isaiah

Gabriella Grace

Sloan

Alexander

Cole

Emmett

Maxwell Raymond “Bay”

Halle Ann 

Nate

Timothy James

Baby M

Olivia

Crosby

Sawyer

Freddy and Max (and baby on the way)

Grace

Sylvie

Baby G

Ava Irene

Benjamin

Baby P

Baby H

Bennett

Oliver

Baby T

Sadie-Mae

Boone

Max

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Callum Joseph Thomasimg_9053

And for the babies who are not pictured here, but who are just as important as the ones who survived, you are greatly missed and deeply loved. The ones who don’t come home from the hospital in their mamas’ arms, like Nancy Stella and Freya Louise and Connor James and all of the precious babies who were lost, these babies often have a greater impact on my life than the ones who lived. I feel great comfort knowing Lucy has such amazing little friends in heaven with her.

Happy birthday in heaven, Lucy Dair. I ache for you every day. I see all the empty spaces where you should be. Five years closer to having you forever. I love you and I’m so proud to be your mommy.

 

UAB MFMs and Isoimmunization

I have had this blog post mostly written and sitting in my draft folder for months now, waiting to be published. It weighs on me and I think about it often, rewriting certain sentences in my mind, adding and editing mentally while I go about my tasks during the day. Mostly, I want the whole post to be saturated with forgiveness and grace, but also truth. The doctors I write about are real people, and I don’t want to attack their character or publicly shame them for mistakes they made. What if blog posts were written about me every time I made a mistake? What if I had a job where my actions had life or death consequences? That would be so difficult. And these doctors have done some truly wonderful things for me, like the amniocentesis and pushing the insurance company to cover treatments during my pregnancy with Nora (before transferring to Dr. Moise.) But truth is incredibly important and I feel deep in my heart that lives could be at risk if I don’t share the truth. I feel a heavy responsibility to protect families from experiencing what our family has experienced. I have forgiven the doctors at UAB for their mistakes. I forgive them over and over again when my heart breaks yet again for my girl and I forgive them again when I run through the events leading up to her death for the hundredth time. The one person I struggle to forgive the most is myself. As a mother it is my job to protect my children and I feel like I failed Lucy in the worst way, even though I really did try my best at the time to save her. I just didn’t understand the disorder enough back then. I was confused and scared and scrambling around grasping for information about anti-Kell antibodies (which was very hard to find.) I didn’t know the treatment options available or the proper monitoring protocols. I thought I could trust my MFM specialists to know all of these things and I placed my daughter’s life in their hands. There was so much I didn’t know when I was pregnant with Lucy in 2013. But I know now, and I cannot quietly sit by and leave other babies to Lucy’s fate. Hopefully I can spread the word and get the right information out there to protect families in Alabama dealing with isoimmunization/alloimmunization.

A couple of weeks before I gave birth to Callum I finally had my follow up appointment with the MFMs at UAB hospital to discuss what happened with Lucy. After Lucy was stillborn, I scheduled a preconception appointment at UAB to discuss everything that happened during the pregnancy and her autopsy results, placenta analysis and blood work results. One of the head MFMs called me a few weeks after Lucy died and said he thought I had had a fetal maternal hemorrhage and that was the reason we lost Lucy, not just the anti-Kell antibodies. He said there was no reason for me to have the follow up appointment and he encouraged me to cancel it. I was ecstatic that my antibodies weren’t necessarily to blame for Lucy’s death (supposedly) and I canceled the appointment like he suggested. This meant that I never got to discuss what happened during my pregnancy with Lucy or go over the decisions that the MFMs made. No one was held accountable. I had no idea if they learned anything from my experience. It haunted me over the years and the questions I had for the doctors just bounced around in my brain that whole time, unanswered.

UAB is good at many things, and even the MFMs at UAB might be great at treating common pregnancy complications. But when it comes to isoimmunization their protocols are out of date, possibly putting unborn babies at risk. They start MCA scans (the special ultrasound that checks baby for anemia) at around 22-24 weeks even when the woman has a critical titer. This was their plan for Lucy, even though my Kell titer was 1,024 (critical titer is 8.) I asked them many times during my pregnancy to do an MCA scan to make sure Lucy wasn’t anemic. They refused over and over again. It is a non-invasive, quick ultrasound and it is the only way (besides doing an amniocentesis) to check the baby for anemia. Even while they were doing a level II ultrasound at 16 weeks, spending an hour with the ultrasound wand on my belly, when I asked them to please do the MCA scan to see if she was anemic they wouldn’t do it and they missed the anemia that day because of it. The day after I gave birth to my lifeless daughter, I asked Dr. O if they would change their protocols and start scanning women with critical titers sooner now because they saw what happened to Lucy. He said, “We don’t change protocols just because of one baby.” Naively, I still thought that surely they would have learned to be more cautious when treating other isoimmunized women because of what happened with Lucy. That was one of the only thoughts that gave me comfort after Lucy died. Maybe other babies would be saved because of Lucy. But about a year or two ago I was contacted by another Kell mama in Alabama, and I encouraged and helped her through her pregnancy. To my horror, even though her titer was well over critical, the MFMs at UAB told her she would have her first MCA scan sometime between 20-24 weeks. It was apparent from her experiences with them that they had changed nothing after losing Lucy. After realizing that, I knew I had to meet with them to discuss everything that happened with Lucy and urge them to treat this disorder more seriously. If they had updated their protocols and treatment options after Lucy died, I would not have felt compelled to have this meeting with them. By the way, women with critical titers are supposed to have their first MCA scan between 16-18 weeks to make sure the fetal anemia is caught in time to treat.

So, I met with the head of the MFM department, Dr. D and one of the main MFMs who handled my pregnancy with Lucy (Dr. O) a couple weeks before giving birth to Callum. I really appreciated them agreeing to this appointment since it had been over four years since Lucy died. I can only imagine how many patients they had treated in the previous four years, so I’m actually surprised that they remembered anything from my pregnancy (and maybe they couldn’t remember everything which is why some responses were so vague?)

I know it must have seemed strange to them that I would want to come in four and a half years after losing my baby to discuss what happened. They were polite and respectful and I know it was probably hard to do that during this conversation. The one thing I appreciate most is that Dr. O referred to my daughter as Lucy. He didn’t call her “the baby” or “fetus” he called her Lucy and that meant the world to me. I wish other people in my life would just call her Lucy and say her name like they say my other children’s names. It was unexpectedly refreshing and I appreciate him doing that for me.

Unfortunately, I left the appointment feeling discouraged, disappointed and depressed, but also more determined than ever to keep fighting for babies like Lucy, Nora and Callum. Where do I even start? The doctors did not take any responsibility for what happened to Lucy. Many of my questions were not answered in the way I hoped they would be; some weren’t answered at all. I was hoping that the doctors had actual medical reasons for the choices they made regarding my treatment. I think that would have given me some peace. For example, when I asked, “Why did you wait a whole week to scan Lucy after the IUT, especially since her hematocrit was 6?” Pause….”Well, that’s just what we do.” Another example, “When I didn’t feel Lucy move again after the IUT and I came into labor and delivery a few days later, why wouldn’t you do an MCA scan to check her for anemia even though I asked over and over again for one? Why was I sent home? She was dying.” They said something about MCA scans possibly being inaccurate after an IUT, but they didn’t know why I was sent home. They just didn’t have an answer. If they had listened when I insisted something wasn’t right and she wasn’t moving, and checked her anemia levels then they possibly could have saved her.

When I asked, “In the past four years since Lucy died, what has UAB done to ensure that this doesn’t happen to another baby?” they couldn’t tell me. I was given a vague response about how what happened to Lucy was very rare and most women don’t have a titer as high as mine. I talked about how when I came back with my second Kell pregnancy, the MFM told me I should just hope that the baby was Kell negative and to come back at 16 weeks for an amniocentesis. I showed them a picture of Nora and said that if I had trusted their expertise and gone with their treatment plan, she would be dead today. They had nothing to say, except, “Well, maybe she would have survived without the plasmapheresis and IVIG? We don’t know for sure.” “But you were willing to take that risk with my daughter’s life, even after seeing what happened with Lucy?” Silence.

Both doctors remained determined to stick with their MCA start time of about 22 weeks for women with critical titers. I tried explaining that a lot of babies would not be alive by 22 weeks if they waited that long before being checked for anemia, but they disagreed. They said there are no specific guidelines set by the ACOG saying when doctors HAVE to start MCA scans so they usually go case by case and decide when to scan based on each specific woman and her history. I explained that this is exactly what terrifies me since with my specific case, they saw that I had a Kell titer of 1,024 and decided that the best course of action would be to start scans around 22 weeks. One doctor spoke up, “Well we have learned since treating you that sometimes even in first sensitized pregnancies, babies can be affected earlier than 22 weeks if the titer is very high and the woman has anti-Kell.” So I asked him if a woman came in today with my exact situation, (first sensitized pregnancy, anti-Kell titer of 1:1,024) what would the treatment plan look like? The doctor said they would not suggest plasmapheresis and IVIG (the treatments that saved Nora and Callum’s lives) but “now, we would suggest starting MCA scans as early as 18-20 weeks.” This is the most ridiculous thing since Lucy died because they caught the anemia too late, even with a scan (that I forced them to do) at 18 weeks.

I won’t go through all of  my specific questions and their answers. I think the most unsettling thing about the whole appointment was how nonchalant they seemed about it all. I tried to convey, somehow, with my inadequate words how important Lucy was to us, and how their choices had impacted our family forever. I told them I would have rather died than have to live without her. I would have gladly taken her place if I had been given the chance. How could I explain how precious my baby girl is to me? I just sobbed. My mom told them that people trust UAB, we trusted UAB with our baby, and they need to take that responsibility seriously. I told them they had so many chances to save Lucy and they let her down over and over again. They said nothing. No apology, no promise to protect other babies, no real change. I’m guessing they decided beforehand not to admit to any wrongdoing during our conversation and they clung to that fiercely.

When I said it seems like UAB tries to do the least amount of monitoring possible, instead of being extra cautious with these little lives, they did not deny it. When I said, “Many women ask me for MFM recommendations in Alabama. Some ask specifically if I could recommend UAB. I always wish that I could recommend UAB but as far as I know, I can’t because I don’t think their babies would be safe here. When they ask me if they should go to UAB for treatment, what should I tell them?” Silence…and a shrug of the shoulders. Right at the end of the appointment when we were getting up to leave, Dr. O did say that Lucy was important to them and she had affected them in some ways. He just couldn’t tell me how they have improved and I haven’t seen any evidence of that. One thing he did agreed to do was scan a woman with a critical titer before 22 weeks if she specifically asked for and insisted on the MCA scan. But how is a woman supposed to know she has to request this type of scan in order for her baby to receive the right monitoring? The MFMs are the ones who should be providing the right care even if a mother doesn’t insist on the specific tests by name. I told them that many hospitals all over the world start MCA scans by 18 weeks for women with critical titers. Dr. O asked which ones but I didn’t have the names of the actual hospitals on hand. He said if I gave him a list of other hospitals and practices that start MCA scans by 18 weeks then he would consider changing their policy. I promised him that I would.

I went in to this appointment giving these MFMs the benefit of the doubt. I was hopeful that maybe I had just projected my grief of losing my daughter onto them and that is why I thought they had given us such inadequate care, but they only confirmed what I had thought. They do treat isoimmunization with nonchalance and they are resistant to change, even if it means babies might die.

Here is my warning: If you are pregnant and you live in Alabama and you found out that you have tested positive for anti-Kell antibodies, or anti-D antibodies, anti-c, anti-E, anti-jka, etc. do not trust UAB to protect your baby’s life. From my experience and my observations, I can only conclude that they will not provide adequate monitoring or treatment and your child will be in danger under their care.

You will need to find another MFM out of state to give you the proper care (since there are no other MFMs in the entire state of Alabama.) Dr. Trevett in Atlanta is amazing and so is Dr. Moise in Houston. Those are my two recommendations if you want phenomenal care for you and your child. My OB here in Tuscaloosa will now be referring any of his “ISO moms” who come up with a positive antibody screen to Dr. Trevett in Atlanta, bypassing UAB altogether. It is so worth the drive. I’m sure there are also other MFMs out of state who know how to properly treat isoimmunization/alloimmunization.

It sounds ridiculously dramatic, but as I left that appointment at UAB, I had the very real sense that I was walking out of a dangerous place, and I wanted to run to get away. I placed my hands on my swollen belly with my healthy kicking baby boy inside and thanked God that my son was safe. I left that appointment in awe of Dr. Trevett and Dr. Moise, wishing I could hug them and express my deep gratitude for them. I think that was the moment that I knew Callum’s middle names would be Joseph, after Dr. Moise and Thomas, after Dr. Trevett. They respect the trust that we put in them to protect our children. They take every step possible to provide the best monitoring and treatment for their patients. They truly care about our babies. I am so glad I left Alabama for Nora and Callum, and I am devastated all over again that I stayed at UAB with my precious Lucy. I just had no idea. What I would give to reverse time and leave the state for better care during my pregnancy with Lucy.

A couple of months after my appointment at UAB, I sent Dr. D and Dr. O a list of 57 different hospitals and medical practices around the world that start MCA scans by 18 weeks, including a real life example of a woman treated at each hospital. I included the patient’s initials, her antibody, her titer and when they performed her first MCA scan. Dr. D replied,

“Thank you for your continued interest and info. We are in the process of rewriting our guidelines and plan to evaluate MCA doppler in the second trimester (16 -18 weeks) in appropriate patients. I’ll let you know our final pathway.”

This felt very promising! I still have not heard back from them, but if they decide to update their protocols I will definitely come back and update this blog post with their improvements. Until then, I strongly urge you to skip UAB hospital if you are dealing with isoimmunization during pregnancy and find an MFM who will treat your pregnancy with caution and expertise.

One last thought: When I left my appointment I felt so incredibly defeated. My grief over my daughter’s death just swamped me like a big wave. It felt like she meant nothing to them, like her life was worthless. It gutted me all over again to think that her death was preventable if only I had known then what I know now. And the fact that the people who should have saved her but didn’t, had just denied their role in her death made it hurt even worse. But that morning before my appointment my mom had shared this verse with me-

Lamentations 3:57-59 You came near when I called on you; you said, “Do not fear!” You have taken up my cause, O Lord, you have redeemed my life. You have seen the wrong done to me, O Lord; judge my cause.

And that verse came to mind as I drove away from UAB hospital. None of this was out of God’s control. UAB might have failed my daughter but God did not. Even though I can’t trust UAB, I can absolutely trust God. And even if my daughter’s worth was lost on those doctors, she was intricately woven together by the Creator of the universe and He treasures her. God desperately loves Lucy even more than I love her and that gives me peace. And the injustice done to Lucy and me? God sees the wrong done to us and He will judge our cause. I cannot force them to see Lucy’s worth or to be accountable for their actions but I can hopefully protect other babies in Alabama from experiencing what I went through.

All Clear

Well, we went in for Callum’s seventh blood transfusion on the Friday before Thanksgiving and ended up leaving the hospital without one! When we arrived that morning for the transfusion they inserted his IV and had his blood drawn to check his levels and we were happy to find out that his levels had gone up just a little bit on their own! His hematocrit and hemoglobin the Monday before had been 25.7 and 9.1 and on Friday they were 26.6 and 9.3. It was the first time in his life that he had brought his counts up without a blood transfusion so we were elated.

His hematologist checked his blood for my antibodies and it came back completely negative! I was surprised by how emotional I felt when he told me Callum’s antibody screen was negative. My baby was finally free from my dangerous antibodies for the first time in his life. He can now make his own blood and it won’t ever be destroyed by my antibodies again. It has been a long hard road to get my boy to safety. We did it! They removed his IV and sent us home without a transfusion.

We came back a few days later to check his counts one more time right before Thanksgiving and his numbers had BARELY gone up. His hemoglobin was the same (9.3) but his hematocrit had gone up from 26.6 to 27 so we were cleared to leave the state and visit family in South Carolina for Thanksgiving. We had such a great Thanksgiving with everybody. Callum’s Grandparents got to hold him for the first time and his SC aunts and uncles got to hold him for the first time without monitors and wires attached to him.

Yesterday I drove the hour to Children’s of Alabama for the last time to have Callum’s blood checked by the hematologist. His levels had gone up again on their own! His hematocrit was up from 27 to 28.4 and his hemoglobin was up from 9.3 to 9.6. We were officially released from hematology and we never have to check his counts again!! Thank you God, for this amazing gift.

Driving home from the hospital for the last time with my healthy boy in his car seat was redemptive and beautiful but bittersweet. This is how Lucy’s story should have ended. If she had been given the right monitoring and treatment like Nora and Callum, then I would have driven home one day in 2013 with my healthy baby girl in her car seat and our lives would have been completely different. Our family would be intact, our hearts would not be irreparably broken. Nora would grow up with a sister. Liam and Asher’s childhoods would not be marred by this tragedy. So many shoulds and woulds, and though I rejoiced that we were done, my grief noose tightened just a bit as I drove home with my healthy rainbow boy. But I also think about the other babies who might not be alive if it weren’t for Lucy and this blog. How many other lives would be devastated by tragedy if Lucy had lived? I’m reminded of a song I heard one day while driving to Atlanta for an ultrasound. It’s by Judah and the Lion and the lyrics bring me to tears every time I hear it.

And I’d take it all back, take it all back, take it all back just to have you.

Just typing the words makes me tear up. The words surge all the way down into this deep part of my soul, the part that still desperately wants to save my daughter. I think about the question, “Would I take it all back just to have my baby Lucy?” My mother heart would do anything to have my daughter back, to keep her alive. I would take it all back just to have her. But I also know that I couldn’t possibly make that choice knowing now what her life and her death have meant for other families. I am comforted knowing that God is in control of every little detail of my life and Lucy’s life and I don’t have to make these impossible, hypothetical decisions. But I still feel a deep ache knowing that Lucy’s story could have ended like Callum’s and the treatment that could have saved her was out there all along. Even with such angst in my heart about what happened to Lucy, I am flooded with relief and joy and gratitude knowing that Callum’s story will end differently.

Still in the NICU

Well, Callum definitely won’t be going home this weekend. He has had a few setbacks so I’m trying to readjust my timeline and my expectations on when we can bring home our baby. His hematocrit dropped to 25, which isn’t too bad (they usually transfuse between 22-24) but he wasn’t feeding well, he was having some oxygen desats and his retic was still super low (meaning he isn’t making his own blood yet) so they decided to go ahead and do the blood transfusion. They put an IV in his foot which made me so sad because it looked really painful. Since it took a while for the blood to be available I went back to the RMH to sleep and when I came back in the morning he had an IV in his hand because the foot IV didn’t work. He had just finished having his blood transfusion when I got there and his skin looked so pink and healthy.

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He was awake and hungry so I breastfed him and he took a whole feeding without falling asleep, which is awesome! A few minutes later I heard him filling up his diaper so I decided to change him. When I opened up his diaper there was quite a bit of blood mixed in with the poop. The doctor came to look at it and she said he could either have a dairy allergy or he could have something called Transfusion Related Gut Injury (TRAGI) which can sometimes happen in micro-preemies who have blood transfusions. He’s definitely not a micro-preemie so we are hoping it is just a dairy allergy. The timing, though, suggests that it might have something to do with the blood transfusion. The doctor is x-raying his abdomen right now to try to get answers and I’m cutting all dairy out of my diet just in case. They are putting him on gut rest until they can figure out what is going on. Callum’s ferritin (iron) levels are really high on top of all of this. Before the blood transfusion his ferritin level was 1,216 and the normal range is 25-250. Since he was given adult donor blood which has high levels of iron in it, his levels are probably much higher now. They are running liver function tests to see if his liver is being affected by all of this extra iron in his body.

It is hard not knowing how much longer we have to live here in Atlanta separated from our family and our normal life and our sweet baby Callum. And can I just say how absolutely unnatural and weird it is to have a NICU baby in the first place? It’s unnatural to give birth and then never touch or hold or even see the baby for hours after that. It feels wrong for my baby to go through painful procedures without me there with him to comfort him. I show up and he’s suddenly got an IV or he’s had a vaccination, etc. and I wasn’t there to hold him when he cried. It’s completely unnatural to ask a stranger if I can please hold my baby or change his diaper or feed him. I’m his mother. I should be the one giving permission to others if they want to handle my baby. Nora still hasn’t even met Callum and Josh has seen him for maybe a couple hours in the past two weeks. All of this feels off but thank goodness it is temporary. Part of me feels incredibly privileged to even have a baby in the NICU. The one and only dream I ever had of Lucy after she died was of her in the NICU. I was going to visit her and I walked into the hospital, up the elevator to the next floor and down a long hallway to my baby Lucy’s crib. She was so sweet with chubby cheeks and brown hair and oh, I loved her so much. I was so happy to be with her in that sunny little room. Then I woke up to my nightmare…swollen, milk filled breasts and empty arms and a permanently mutilated heart. I was gutted. I begged God not to ever, ever let me dream about her again because I couldn’t stand waking up to my life. I will just wait until heaven. Thankfully He heard my pleas and hasn’t ever given me a dream about Lucy again. It would be too painful. But after I had that dream I struggled any time I heard a NICU mom complain about her living baby who was still in the NICU. I envied her. Now I get to be one of those moms with a living baby in the NICU and I am so, so grateful (and yes, I still complain about the hard stuff.) Even though it is inconvenient, it is stressful, it is exhausting and it feels unnatural, I know we are very blessed to be in this situation. Do you know what is truly unnatural? A mama saying goodbye to her baby for good. A mama living the rest of her life without her child.

So, yes, it is hard and we are exhausted but we are so thankful.

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Please continue to pray for our baby Callum to get over whatever is hurting his belly, to get better at his feedings and for his blood levels to normalize. We appreciate all of you so much!