At the moment, we live in Tuscaloosa, Alabama, where my husband, Josh, teaches at The University of Alabama. He is more than I deserve…steady, loving and smart, quick to forgive and totally down with our family chaos. We are so thankful to have him as husband and Daddy. I get to work at The Allo Hope Foundation, which I founded in 2019 to provide support, advocacy and education to families around the world who are dealing with alloimmunization and HDFN. Josh and I have been married for 15 years and we have five living children- Liam, Asher, Nora, Callum, and baby August. Our daughter, Lucy Dair, was stillborn during my first Kell sensitized pregnancy, and we lost four other babies in early miscarriages unrelated to the antibodies. We love God, we love each other and we love sharing our story with you as God writes it.

Today a Facebook memory popped up from seven years ago:

I still can’t believe Nora is here sometimes. The wait between Lucy and Nora felt excruciatingly long, probably because at the time I had no idea if there ever would be a Nora. But it was a terrible two and a half years of grief, fear, uncertainty and deep longing for more children, not to mention the two early miscarriages and adoption loss.

I looked back at my journal from that year and read today’s entry, November 29th 2013:

So today, from my view here in 2023 I just want to acknowledge the beautiful ways that God answered my prayers from 2013. Whether those prayers were whispered or begged or sobbed I don’t really remember, but I do know they came from a truly broken heart.

“Oh Lord, come and satisfy my desire in this scorched place and make my bones strong. Lord, please come and strengthen me. Give me endurance and patience.”

My God heard me. Every single prayer was gathered and acknowledged and answered. As I mentioned in my Facebook post from 2016, Psalm 10:17 says that God inclines His ear, He hears the desire of the afflicted and strengthens their heart. He did strengthen me and give me the endurance to get through those years.

And as I wrote in my journal ten years ago:
Isaiah 58:11 And the Lord will guide you continually and satisfy your desire in scorched places and make your bones strong; and you shall be like a watered garden, like a spring of water, whose waters do not fail.

Over the past ten years God has continued to guide me and satisfy my desires and strengthen me. I give Him all the praise, all the love and gratitude. Thank you, God, for the beautiful ways you have answered my prayers and brought me from a place of loss and grief to hope and life, like a watered garden, like a spring of water whose waters do not fail.

Once again the days between my blog posts have stretched out to weeks and now months. I remember when I first started this blog in 2013 I was in such agony, it felt almost blasphemous to include the word hope in the title. I didn’t know it at the time, but I was caught in the “this is how I will always feel” vortex that comes with profound grief. So much trauma from the past and fear for the future. It took a great leap of faith to tack on the “and Finding Hope” to “Losing Lucy” when I created this blog.

Now, as we head towards the end of 2022, I look around and realize I’m here, in the hope and the light that I was scared to even dream of in 2013. For the first time in a decade Josh and I aren’t gearing up for another stressful pregnancy. We are flipping the “Fight or Flight” switch and we are now in recovery mode.

I have weekly EMDR treatments and counseling sessions to work through the trauma of my four alloimmunized pregnancies. I finally feel like I’m emerging from the shadows of perinatal and postpartum depression, anxiety and OCD that took hold during my last pregnancy.

Our family is complete and our children are healthy and growing. Liam is 13, Asher is 11, both in middle school and handling it quite well, actually.

Lucy would be 9 if she were here. Her absence can be deafening some days. Nora is 7 and loving the first grade and gymnastics.

Callum is in pre-K and just turned 5. Our baby August is 2, not so much a baby anymore. My only blue eyed, dimpled boy.

The Allo Hope Foundation, which I started in 2019, is thriving and growing in ways I never could have imagined. Providers and patients have stepped up to help support our cause, generously giving back in order to protect families from this devastating disease. I’m hopeful that new, safer treatments are on the horizon. My gratitude literally has me in tears as I type this. The way the community has rallied around our patient community the past few years has surpassed all of my hopes, and there’s so much more to come. I remember how isolated I felt when I first received my diagnosis of red cell antibodies. I felt powerless to protect my baby, unable to make my own reproductive decisions, confused by this complex disease, dismissed because my condition was rare. But here in 2022, heading into 2023, I feel empowered, educated, and supported- the way I want every woman with maternal alloimmunization to feel.

On that note, I want to share some of my favorite resources we now have for patients, providers and loved ones dealing with maternal alloimmunization and HDFN over at the Allo Hope Foundation.

Letter to Providers

To help alleviate some of the burden on patients, we created this letter to providers that includes an overview of basic treatment protocols for alloimmunized pregnancies. This has been reviewed and signed by the AHF Staff and Medical Advisory Board. It has sources cited and QR codes that doctors can use to get quick access to more of our resources.

letter-to-providersDownload

The Allo Podcast The Allo Podcast brings you into the complex world of maternal red blood cell alloimmunization and Hemolytic Disease of the Fetus and Newborn (HDFN.) We share real life patient experiences, valuable insights for providers and care teams, and easy to understand monitoring and treatment information. We empower you to advocate for the best possible care, and we have a great time doing it.

Free Prenatal and Newborn HDFN Patient Booklets for anyone who wants to order them. Some patients like to order a few; keeping one for themselves and giving the others to their care team.

Prenatal Decision Tree for patients and providers to use as a framework when creating their personalized care plans.

In Memory A place to honor your baby who died.

Antibodies in Pregnancy: An AHF Support Group Our support group of over 1,200 women with alloimmunization from around the world.

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.

It has been a while since I have updated the blog! Life with five kids is super busy, as you can imagine. I wanted to give everyone a quick update on our family and The Allo Hope Foundation.

Our baby August is now ten months old and is thriving! He is meeting all of his milestones on time- crawling everywhere, eating everything, pulling up and climbing furniture and babbling. He is such a sweet, happy baby. August is completely done with HDFN and has no lasting effects from his battle with anti-Kell antibodies. I will write a blog post soon with more details about his treatment for HDFN after he was discharged from the hospital. Here are some recent pictures of our baby August!

Callum is now three years old and will start preschool in the fall. He loves letters and numbers, cars, trains, and his siblings. He is a sweet big brother to August. Nora is now five, about to turn six, and will be starting kindergarten in the fall. She is still very maternal, taking care of all four of her brothers, even when they don’t need her help. Liam and Asher are now twelve and ten years old and are super independent and fun to be with. We feel so incredibly blessed to have five living, healthy children. We never thought we would actually be able to complete our family, but we are definitely finished having babies. Josh had a vasectomy last month so we will never have to face another high risk pregnancy. VERY glad to be done!

The Allo Hope Foundation is the nonprofit organization that I started in 2019 to help educate and support families who are facing maternal alloimmunization and HDFN. We have a ton of resources available on our website www.allohopefoundation.org and we have a support group on Facebook called Support for Antibodies in Pregnancy. If you have been diagnosed with red cell antibodies during pregnancy, come and join our group on Facebook where you can meet other women who have experienced an alloimmunized pregnancy. We also recently created educational booklets for patients with antibodies. We have a prenatal booklet for pregnant women with antibodies and a post birth booklet for parents of babies with HDFN.

If you would like a booklet, just fill out this form and I am happy to send you one free of charge! Another project we are super excited about is the Alloimmunization/HDFN research platform at AllStripes. Patients can sign up for free at www.allstripes.com

As always, I’m happy to answer any questions about HDFN and antibodies in pregnancy. Just leave me a comment here or you can email me at [email protected]

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.

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.

Our sweet boy, August Judah Weathersby, arrived almost two weeks ago and every day since then we have fallen more in love with our boy. August was born at 37 weeks and 1 day, which is incredible considering the circumstances. He weighed 8lbs 1oz and was 21 inches long.

This was my second c-section and it was different in a lot of ways from my last c-section. Callum’s delivery was completely unexpected and urgent (he was going into distress so we had to deliver as quickly as possible) but this one was planned. Josh wasn’t able to make it to Atlanta in time for Callum’s birth so I was alone for the c-section, but this time Josh was with me the whole time. We drove up to Atlanta the night before and ordered food from our favorite Thai restaurant. Then we snuggled on the couch in our hotel while eating dinner and watching a movie. We were buzzing with excitement and disbelief that we had actually made it this far, things had gone smoothly and our baby was still alive and ready to meet us the next morning.

During the c-section, Dr. Trevett was able to join us, which was so special. He wasn’t actually doing the procedure (my OBGYN, Dr. Howard performed the c-section) but he was able to stand right next to me and be there for the delivery. Right after August was born we couldn’t see him yet but we could hear him crying and I was desperate to get a glimpse of him. I think he was grunting so they had to work on him a bit to make sure he wasn’t having trouble breathing. Dr. Trevett told us, “He looks really good, he’s big! And he has a lot of hair! It looks blond!” It was fun to have him narrate when we couldn’t see August yet. They finally brought August to us and he was so beautiful and pink and chubby. He looked like a normal full term healthy baby, not a baby who had just fought for his life for 8 months. We were so in love. I told Dr. Trevett, “He’s only here because of you.” And he laughed and said, “Well, you guys had a lot to do with it too.” The c-section went great and felt like it took 10 minutes and then I was taken to recovery. August was taken to the transition nursery for observation since he was still grunting. They wanted to do blood tests and make sure he was breathing well. After observation and testing they would decide if he needed to go to the NICU or if he could come to my room and stay with us.

Once we were taken to our hospital room everything was suddenly still and quiet and Josh and I were alone. We were so overjoyed that our son was here and he was safe. We had a few pictures of August from the operating room that we looked through over and over again and discussed. Who does he look like? I wonder what his hair looks like under that hat? I thought he would weigh more, what about you? As the minutes and then the hours ticked by I became more and more upset that we couldn’t see August. I remember after Callum was born I was not allowed to go see him for 12 hours after the c-section. That is the hospital policy for all women who have c-sections- no getting out of bed for 12 hours. This isn’t a big deal for the families who have healthy babies because the babies are in the room with them, but for the families whose babies are whisked away for observation or admittance to the NICU, this can feel excruciating. For me, the 12 hours after Callum was born were by far the hardest of his entire 20 day NICU stay. There is a deep primal need to have your baby with you after birth, to have him tucked up safely under your chin on your chest. The ache feels almost physical when you give birth and then there is no baby in sight, no skin to skin contact, no newborn smell. My pain might be more intense because of the trauma we experienced with Lucy, but I’m not so sure. I have a suspicion that the ache is just as deep even for mothers who haven’t lost babies.

Josh was wonderful and called the transition nursery over and over again for an update on August, and asked how much longer until we could see him. They told us his blood sugar was low, his hematocrit was great (39), so he wasn’t anemic, but his bilirubin was a bit high (4). They put him under phototherapy lights to bring his bilirubin down and they told us as soon as they were sure that he was breathing well they would try to send him to the well baby nursery on our floor. We were both relieved that he was doing so well, but I started to feel panicky looking around our empty hospital room. It brought me back to the hospital room we stayed in after Lucy died. No bassinet, no baby, just a heartbreaking empty silence. Josh decided to go get our bags and pillows from the car and once I was alone I allowed myself to cry. Part of me felt like I didn’t deserve to cry because my baby was alive and well, and so many other women’s babies weren’t alive. But I could not contain my tears, I sobbed and sobbed, aching for my baby August who I hadn’t even held yet. A nurse came in and saw that I was crying in my bed and I felt ridiculous, but she was so kind and compassionate. She went and talked to the head nurse who also came in and asked if there was anything they could do to help. I said the only thing I wanted was my baby and I understood that they couldn’t do anything to change hospital policy. They tried reassuring me that he would be fine and I clarified that I wasn’t worried about him at all, I just needed my baby with me. I told them that I had struggled in the past with PTSD after losing my daughter and this felt like PTSD (mixed with some intense hormones I’m sure.) Josh was also really sweet and affectionate and kept calling to check on August. After 8 hours of waiting we finally looked up and saw a nurse wheeling in a bassinet. You guys, we felt EUPHORIC when we realized it was him.

Josh got to hold him first and then I got to hold him on my chest and it was magical. He felt like God’s redemption in the flesh.

Josh and I cuddled with him and smelled him and savored every little detail we discovered. His dimples, his wavy blond hair, the cleft in his chin, his enormous feet and long toes, the way his little nose turns up, the birth mark on his forehead and eyelids (that all of our other babies had too.) It felt like such a gift to be able to soak him in and learn him and hear his little newborn sounds. His bilirubin was still a bit high so we had to keep him under the bili lights but we were so happy to be able to have him in the room with us.

The rest of our time in the hospital was spent enjoying our new son, getting his bilirubin under control, taking a million pictures and trying to get back into the rhythm of pumping and breastfeeding. Josh and I loved having this time together to bond with August without the stress of looking after our other four kids. Because of COVID restrictions, we weren’t allowed to have any visitors at the hospital. At first we were really sad about this because it meant that our parents, siblings and the kids couldn’t come meet August after he was born. But it turned out to be a really sweet time together in our hospital room, just the three of us cocooned in. Josh and I could talk for hours without being interrupted by the kids. We marveled in disbelief at August’s life.

I realized during this time together just how much I had missed with Callum. While he was in the NICU I didn’t feel like he was my baby. It felt like he belonged to the hospital and I didn’t have any ownership over him, like my parental rights hadn’t been granted to me yet. I had to ask them for permission to hold him, feed him, get him dressed. Now, since August wasn’t in the NICU and was in my room with me, he felt like he was mine. The nurses asked me if they could hold him, check his vitals, change his diaper. I was able to bond with him in a way that I couldn’t with Callum until I was home with him. I felt so thankful for this experience with August. It felt like another piece of my healing puzzle clicked into place. Another beautiful, undeserved gift from God.

After about 3 or 4 days under the lights, August’s bilirubin was low enough to stay off the lights. His hematocrit and hemoglobin stayed steady and the last time they checked, his hematocrit was 43. Dr. Trevett came twice to visit August and see how we were doing. As always I could not find the right words to express our gratitude for the amazing care he provided during my pregnancy. Not only did he manage an extremely risky alloimmunized pregnancy but he did so in the in the middle of a pandemic. Throughout my pregnancy he saw me every single week (sometimes twice a week), monitored August closely and helped me manage my fears and anxieties along the way. Dr. Trevett performed 7 intrauterine blood transfusions on August and got him all the way to 37 weeks safely. Thanks to him, August was born alive and healthy. We are so thankful for Dr. Trevett and all that he has done for our family.

We are also incredibly thankful for Dr. Moise who helped throughout my pregnancy as well, just from a distance. He checked in on a regular basis to see how the pregnancy was going and he was available any time Dr. Trevett or I had questions about my treatment. He was also ready to do any early IUTs if they had been needed.

August and I were discharged from the hospital together, which was a dream come true. No NICU stay, no leaving the hospital empty handed.

When we got home, the kids and my parents and even the neighbors were waiting outside in the yard, ready to meet baby August. The kids were so excited and relieved to finally see their baby brother in person, alive and healthy. We had warned them from the beginning that we didn’t know if he would survive and we didn’t know if we would get to bring him home or not. Just like we did during my pregnancies with Nora and Callum, we were very clear with the kids about what was happening inside my body and the risks that the baby was facing. We never gave them false hope or made promises that we weren’t sure we could keep. They prayed every night for God to protect their baby, which made it extra sweet when we finally got to see them meet their brother.

Over the past two weeks we have enjoyed our baby August so much. Seeing my five kids together feels so right, like a long aching desire fulfilled, like God’s promise kept in the most beautiful way. When I look at August I think about these verses from Isaiah 41-

17 When the poor and needy seek water,and there is none,and their tongue is parched with thirst,I the LORD will answer them;I the God of Israel will not forsake them.18 I will open rivers on the bare heights,and fountains in the midst of the valleys.I will make the wilderness a pool of water,and the dry land springs of water.19 I will put in the wilderness the cedar,the acacia, the myrtle, and the olive.I will set in the desert the cypress,the plane and the pine together,20 that they may see and know,may consider and understand together,that the hand of the LORD has done this,

the Holy One of Israel has created it.

Seven years ago we were told that we could never have any more biological children. And yet, in the desert wasteland of my womb God grew THREE healthy Kell positive babies. I hope when you look at our baby August you see what I see- a miracle that only the hand of the Lord could have performed. The Lord has done this, the Holy One of Israel has created this sweet baby and sustained him.

There is still so much more to write about but this blog post is already way longer than it should be so I will write more later. Thank you so much to every one of you who prayed for August and followed along during the pregnancy. We have been so encouraged by all of the support and kindness you have shown us.

Our seventh and last IUT is done and now we have less than a week until we meet our son! The IUT was performed at 35 weeks and 4 days and it went well. Thankfully the baby was in a great position for the procedure. His beginning hematocrit was 32 and ending hematocrit was 44. I feel so incredibly relieved that I never have to go through another IUT again in my life. Here are a few pictures from IUT #7:

I am now taking Phenobarbital three times per day for ten days to develop the baby’s liver. This helps him handle the high bilirubin after he is born, and will lower his chances of needing an exchange transfusion. We are also hoping that it will shorten his NICU time. Once I am finished with the ten day course of Phenobarbital I have a repeat c-section scheduled for Monday, August 24th. I keep hoping that there is some way for me to have a VBAC but my doctors do not feel safe inducing and attempting a VBAC since there is a higher chance of uterine rupture. The baby has to be born between 37-38 weeks so they have no choice but to induce or do a c-section. I want to do whatever is safest for the baby so we are going ahead with the c-section unless I miraculously go into labor on my own before then. This is my 6th pregnancy and despite daily contractions and dilating to 1-2 cm weeks before the due date with all of my pregnancies besides Lucy’s, I have never gone into labor on my own. I don’t think it’s going to happen.

We are counting down the days until we meet our boy next week! Please pray that everything goes well, that the baby and I are safe and healthy and that we are ready for the baby by Monday. We just recently started preparing our home for the baby’s arrival since we didn’t know if he would survive or not, so now there’s a mad rush to get everything ready for him. Thank you to everyone who has followed along with our journey and encouraged us over the years. I will update after the baby is born!

IUT number 6 went great and the baby handled the procedure really well. We were surprised to find out that he wasn’t actually very anemic at all. His beginning hematocrit was 35 and Dr. Trevett brought it up to 45.

Watching baby’s heart strip after the IUT

The baby’s 7th and last IUT will be tomorrow, August 13th, when I am 35 weeks and 4 days pregnant. At 35+1 the baby’s estimated weight was 7lbs 3oz so he is still measuring several weeks ahead. During his last ultrasound a few days ago Dr. Trevett noticed that he was in a bad position for the IUT. His bottom/back was pressed up against the cord insertion again, which would make the IUT much harder. We are hoping the baby moves into a better position by tomorrow so that Dr. Trevett can perform the IUT safely. If anything looks risky or difficult tomorrow, Dr. Trevett probably will not go ahead with the IUT and we will deliver by c-section instead. We are really hoping to have a successful IUT so that baby gets a little more time to grow and develop before birth. I will also be taking phenobarbital the last ten days before delivery in order to develop the baby’s liver and lower his chances of hyperbilirubinemia after birth. I was able to take phenobarbital before Nora was born and she had no bilirubin issues at all. Callum was born by emergency c-section at 34 weeks before I could take the phenobarbital and he struggled with high bilirubin for several days. Please pray that the IUT goes well tomorrow and that the baby is born safely at just the right time, whenever that is. 

A few recent pictures of the baby and the belly:

Thanks so much for all of your prayer and support. We are almost there! 

These guys are so ready to meet their new brother!

Our baby boy is still doing well and growing like crazy. I am 33 weeks exactly today and I feel so thankful to have made it this far with a healthy baby. Our fourth IUT was performed at 29 weeks and 4 days. Baby boy’s estimated weight was 4lbs 3oz. His beginning hematocrit was 25 and ending hematocrit was 42. Everything went smoothly and baby handled the procedure well.

Our fifth IUT was performed two weeks later at 31 weeks and 4 days. Baby weighed 5lbs and 8oz. This time the procedure was much more difficult for Dr. Trevett because of the baby’s position. Somehow he had his back/bottom pressed up against the umbilical cord insertion. The cord was being squeezed by the baby which meant the space the needle had to go into was much smaller than usual. Dr. Trevett and the rest of the team tried everything they could think of to get the baby to move but he wouldn’t budge. They tried tilting the operating table to the left, then to the right. They tried using their hands to manually move the baby and then they tried a buzzer that vibrates and has a loud sound to try and surprise the baby. None of it worked. Dr. Trevett discussed possibly delaying/rescheduling the procedure but we all really wanted to get it over with that day. After several tries, Dr. Trevett was able to get the needle into the squished umbilical cord and the IUT was a success. The baby handled everything surprisingly well. His beginning hematocrit was 28 and ending hematocrit was 42. Here are a few pictures from the last IUT. You can see the needle marks on my belly from multiple attempts into the cord. Usually there are only two tiny scabs left from the needle after an IUT.

On July 19th our Nora Juliet turned five years old! She was able to have a small birthday party with her family and a couple of her good friends. We did it at a nearby lake and stayed outside the whole time to try to lessen our chances of contracting/spreading COVID. It was so hot that the icing started melting and sliding off of her cake, but she didn’t care. She was so excited to be able to swim and play with her friends and have a party. I always think of Dr. Moise on Nora’s birthday (as well as many other moments throughout the year) and feel so thankful for him and the gift he gave to our family. I also praise God for the gift of Nora’s life. We have been blessed beyond comprehension to have Nora here with us for the past five years. She is full of personality and she is so different from her brothers. When I was buying the princess decorations for her party I cried with joy and gratitude because I GOT TO PLAN MY DAUGHTER’S PRINCESS PARTY. I still can’t believe that she survived. I remember fantasizing about having a living daughter and the dream seemed so impossible. Now, every pink item of clothing, every Polly Pocket, every Barbie and baby doll and princess dress in our home feels like a miracle. We are loving every minute of it.

We also were able to squeeze in a family vacation between my doctor’s appointments last week. We stayed in a little cabin in the the Smoky Mountains and got to spend time with my parents and my two brothers and their families. It was so much fun to finally be out of our house. We have been social distancing since March so the kids thought it was incredibly exciting to be in a different environment.

Please continue praying for our smallest boy as he still has two more IUTs left before delivery. The goal is to transfuse at 33+3 and again at 35+3 and then deliver two weeks later. We are really hoping the baby needs very little NICU time since Josh and I won’t be able to visit him much while he’s in there due to COVID restrictions. It hurts my heart thinking that I might only get to see him for a few short hours per day while he’s in the NICU. Nora was born at 38 weeks and was only in the NICU for about 12 hours of observation and then was discharged with me two days later. Callum was born at 34+4 and was in the NICU for almost 3 weeks dealing with anemia, hyperbilirubinemia and preemie issues. The further we can get before delivery, the better. I will update everybody after our next IUT this coming week!

As I continue navigating my way through this high risk pregnancy, which is my fourth Kell sensitized pregnancy, I am learning so many things along the way. I could share about the truths this baby is teaching me about hardship, perseverance and faith but for this blog post I wanted to just list some of the important medical information that I want to remember later. I’m afraid if I don’t write about these details I might forget them and these are very important take aways for other families dealing with alloimmunized pregnancies. So here are the things I am learning and re-learning during this pregnancy that I want you to know if you are facing an alloimmunized pregnancy as well.

If you have a critical titer you need weekly MCA scans to monitor the baby for fetal anemia.

Our babies can become anemic in the womb in just a matter of days. Fetal anemia can only be treated if you and your doctor know that the baby is anemic in the first place. The way to detect fetal anemia is by doing an MCA doppler scan, which measures how quickly the blood is flowing through your baby’s middle cerebral artery in the brain. These scans can be done as early as 15 weeks if the MFM has experience performing MCA scans. If you have a critical titer (4 and above for Kell, 16 and above for all other red cell antibodies) you should start weekly MCA scans by 16-18 weeks.

With this current pregnancy my baby had an MoM of 1.23 at 24 weeks. Six days later his MoM was 1.5 (some readings up to 1.56.) Since we were scanning weekly we were able to catch the anemia in time to treat it. They found matching donor blood, gave me steroids to develop baby’s lungs and then performed the IUT a couple days later. His beginning hematocrit was 25, so it was the perfect time to start IUTs.

If your MFM will not perform weekly MCA scans even though you have a critical titer, find an MFM who will. I drive to another state every week to have these scans done because the MFMs in my state will not provide the right care for my baby. It is worth the drive.

Timing of IUTs should not be based on MCA scans alone.

After IUTs start, MCA scans are not as accurate as they were before. Fetal blood flows differently than adult donor blood. Once IUTs start, the baby either has a mixture of fetal blood and adult donor blood or (eventually) has 100% adult donor blood. This means the MCA scans aren’t always as accurate at detecting fetal anemia. MFMs should base the timing of subsequent IUTs on the ending hematocrit from the previous IUT. Other factors can come into play like how the baby is looking on scans, what number IUT it is and whether your baby had an IPT (transfusion into the belly), IVT (transfusion into the umbilical vein) or both.

After my second IUT, Dr Trevett scheduled the next IUT for two weeks later based on the amount of blood they put into the baby and the ending hematocrit. He continued to scan the baby every week to make sure there were no signs of distress or extreme anemia. The week of the scheduled IUT, Dr Trevett performed an MCA scan and baby’s MoM was 1.39 which is clearly below the normal 1.5 cutoff for a blood transfusion. Thankfully he was not basing the timing of the IUT on the MCA scan alone so we went ahead with the procedure. During the IUT we learned that the baby’s hematocrit was surprisingly low- 20.9. I am so thankful that Dr Trevett knew how to time the IUTs and didn’t insist on waiting for a high MoM to do the next transfusion.

If your MFM has questions about IUTs and how to space them, share this article with him. It is written by Dr. Ken Moise and includes very thorough details on how to perform IUTs, when to start IUTs and how to space them out safely.

intrauterine-fetal-transfusion-of-red-cells.docx

Subsequent IUTs can be performed as soon as 48 hours after the previous one if needed.

Sometimes a baby’s hematocrit is so low that multiple IUTs are needed to bring up the hematocrit safely. Did you know that the hematocrit should never be brought up higher than 3x the amount of the starting hematocrit? So, if a baby has a hematocrit of nine, the MFM should not bring the hematocrit higher than 27 in one procedure. Instead, they should transfuse only enough blood to bring the hematocrit to a safe level and then repeat the IUT procedure several days later. If needed, the IUT procedure can be repeated 48 hours after the first.

My daughter Lucy’s hematocrit at the beginning of her IUT was six, which is extremely low. My MFMs (at the time) transfused 20ccs of donor blood and then sent me home. They would not do another ultrasound until a week later. Their reasoning was that “IUTs can’t be done closer than a week apart anyway, so why check on the baby?” I believed them. Lucy never moved again after that IUT and died just over a week later.  

With this baby the first IUT didn’t go exactly as planned. Dr Trevett had trouble getting the needle into the cord and the baby was extremely active. Despite giving a double dose of paralytic medication, the baby still did not stop moving. Baby eventually dislodged the needle when he bucked into it. Dr Trevett and Dr Gomez discussed what they should do and they decided to stop the procedure and do another IUT 48 hours later. The second IUT went smoothly and the baby was still anemic at the beginning of the procedure. We all felt relieved that the second attempt went well and the doctors were able to fill up baby’s blood supply.

IUTs should only be performed by MFMs with a lot of experience.

Intrauterine blood transfusions are actually very rarely needed by patients and MFMs do not perform them often. This means that few MFMs have adequate experience with this procedure. It isn’t an easy procedure to perform and the baby’s survival rate is much higher if the IUT is done by a practitioner with extensive knowledge of IUTs and experience doing the procedure. Before allowing your MFM to do an IUT on your baby ask them:

“How many IUTs do you perform on average per year?”

“What is your success rate?”

“What is the earliest IUT you have performed?”

“How will you determine how to space the timing of subsequent IUTs?”

“Will you temporarily paralyze the baby before the procedure?”

As mentioned before, I receive my prenatal care in a different state even though there is a large teaching hospital only an hour away with a fairly large MFM group. The MFMs at that hospital do not have adequate experience performing IUTs and they haven’t updated their protocols in years. It is so worth the drive to know my child is in good hands and has a high probability of surviving the IUT. Many women travel to other cities or states in order to have a more experienced MFM perform their IUTs. I love seeing MFMs who refer patients to other practitioners for IUTs or are willing to collaborate with other doctors for their patient’s care. 

If you feel uneasy about your MFM’s ability to perform an IUT safely, it is always a good idea to get a second opinion. Feel free to email me if you would like a recommendation for a second opinion. My email address is [email protected] or you can always message me privately on Facebook (Bethany Weathersby)

If you have experienced an alloimmunized pregnancy or are experiencing one now, like I am, what have you learned along the way? I would love to learn from your experiences as well!

This adoption story does not end well. We have lost our “rainbow baby” yet again. I cannot believe I am writing this post. What I envisioned was a beautiful post about God’s amazing redemption and love for me and our beautiful new daughter, Scarlet Mae Weathersby. Instead, I will be telling the most heart wrenching story of how this adoption failed and how our hearts were broken, yet again.

The birth parents, Kailee M. and Peter M. picked us in May and have been telling us since then that we would be Scarlet’s parents. Kailee kept in pretty regular communication with me, often texting several times a day. Since we met her through the internet, Josh and I were very careful of making sure it wasn’t a scam and that she wasn’t just trying to get our money. She had placed a baby boy for adoption last year, so that put our minds at ease some. She seemed sincere and we had a good relationship. We drove the four hours down to Dothan several times to hang out with Kailee, Peter and her two children that she parents. Our visits always went well. She convinced me that she had looked long and hard for “the perfect family” for this baby and was so glad she had found us. Even the last time we were down there at the end of September (my parents came down to meet her with me) she told me that she wasn’t very nervous about the birth part or signing the papers, but the hardest part was finding the perfect family. She told me again how glad she was that she had found us. Several times she also told me she was afraid that we would change our mind, and I assured her that we wouldn’t. I told her I was afraid that she would change her mind and her exact words,”I can tell you till I’m blue in the face, I won’t change my mind, but the bottom line is you just have to trust me and I have to trust you.” Yes, we trusted her. We took the leap. We prayed long and hard for God to show us what to do. We knew the risk and we felt like Scarlet was worth it. This baby needed to have a chance at a beautiful life with us. I feel good that we gave her that chance and we did all we could for her. But back to the story. Kailee basically took all of our money, although we never gave her money directly. She didn’t work (not sure why) and so we were left with all of her bills to pay- rent, utilities, food, gas, etc. All of this is legal in Alabama, by the way. We ordered her pizza when she wanted it. We gave her so much of ourselves. We gave her so much love and we trusted her. I thought we were close. She even asked me (not that long ago) if I would be the godmother of her two children and I said of course. She was the ultimate con artist, apparently.

Kailee told us from the beginning that she was going to go to the OBGYN, but she never went. Every week that went by we stressed, we worried and we prayed for the baby and wondered if she was ok. After having a high risk pregnancy and stillborn baby, it was hard to stand by and do nothing when Kailee would not go to the doctor. She only went a few times to the ER when she was throwing up. I took her once to a 3D ultrasound to see the baby and confirm the gender. Besides that, she had no prenatal care, or if she did she never told us about it. It was so hard to pray and ask God to take care of Scarlet for us and just trust that He would. It reminded me so much of when I was pregnant with Lucy and prayed and begged God to take care of her. It was frustrating to know that Kailee COULD go to the doctor, but just wouldn’t. It was out of our control as was most of this “adoption.”

Everything was going fine as far as we could tell and then after October 11th we got no more texts from Kailee. It worried us. I felt deep down that something was very wrong. I tried to give her space, thinking maybe she was just working through all the emotions and dealing with the last hard days of pregnancy. I didn’t want to pressure her or overwhelm her. But the days went on and on and she never contacted us. I texted, I called, I emailed, but no reply. I even sent a card in the mail begging her to just let us know if she was ok. We never heard from her again. Josh finally got in touch with Peter and he said they had had some marital problems and he hadn’t heard from Kailee either.

Today, Josh decided to try to see if there was anything he could find out on the internet. He found his way to an adoption page that Peter or Kailee (whoever was on Facebook that day) had liked. It was a gay couple from California who had just adopted a baby girl “Ava Mae” from Dothan, Alabama. And there on the computer was the baby I had fallen in love with on the 3D ultrasound. She looked just like Kailee, we knew it was her. Her two dads were thrilled to have her, cuddling her and posing with her for lots of proud pictures. Apparently she was born on October 12th, the day I stepped out on a limb and posted this post, making predictions about the baby’s birth date and weight. Peter confirmed later that yes, she was born on the 12th and Kailee had picked a different family. We have no idea if she picked them at the end or at the beginning of the process. We have no idea if she had other families out there who she was deceiving into thinking they would be adopting this baby. She always did seem to want stuff from us to handle her life expenses, but never seemed particularly concerned about the baby. It was shocking, really, how little her adoption plan seemed to be about the baby and how much it seemed to be about what she could get out of it. It is shocking also, to see that the baby kept our middle name, Mae, which I picked to honor my grandmother, the one who’s mother I had honored with Lucy’s middle name, Dair. They could have at least come up with a different middle name. I am livid, honestly. I probably should do a better job in this post of being loving and forgiving, but right now I feel so angry and hurt. If she truly just changed her mind she could have at least told us so we wouldn’t have been so worried this whole time. I have been pumping breast milk every 3 hours around the clock to make sure I’m ready for this baby when she arrives. Kailee could have at least had the decency to explain to us that she had made a new decision and it did not involve us being Scarlet’s parents. How cowardly. I shudder when I think about all the money that we lost, all of YOUR money that you donated to a baby that we won’t get. To everyone who donated in order to make this adoption possible, thank you, from the bottom of our hearts. We appreciate every one of you and we are praying that God will bless you for your generosity and kindness. We are so sorry that we lost the money. We are embarrassed and heartbroken. We truly prayed through every decision along the way and felt like we did everything God wanted us to do. We did our best. We took a leap of faith. We knew the risks of trusting someone else with the deepest longing in our hearts. It was a risk for me to induce lactation, knowing the baby might not be ours in the end. It was a risk to tell the boys that when the leaves on the trees turned scarlet, their baby sister Scarlet would be here. It was a huge risk to buy a van for our third child, to set up her whole nursery and buy a Halloween costume for her. Everything is ready for her. Her bassinet is ready and waiting next to my bed, all of her clothes are washed and hanging in her closet. Our freezer is FULL of breast milk I pumped for her. The gift basket for Kailee is all ready and sitting on our dresser. We filled it with so many sweet things so that she wouldn’t leave the hospital empty handed and would feel loved and important. We ordered this beautiful necklace for Kailee and dog tags for Peter that say, “Forever in my heart, Scarlet” and a cute baby bracelet for Scarlet to remind her of her first parents.

I could go on and on about all the sad reminders we are left with, all the empty spaces where she was going to be, but I’ll stop here. I have no idea how to end this. I don’t know how to move on from this new heartbreak. I don’t know how to trust God after this and it will take a long time for me to forgive Kailee for her deceit, her dishonesty and her cowardice. I do know that we are not giving up. We will keep trying, we will run hard after our God and we will continue to praise Him, even when it feels like He has let us down.

Today a Facebook memory popped up from seven years ago:

I still can’t believe Nora is here sometimes. The wait between Lucy and Nora felt excruciatingly long, probably because at the time I had no idea if there ever would be a Nora. But it was a terrible two and a half years of grief, fear, uncertainty and deep longing for more children, not to mention the two early miscarriages and adoption loss.

I looked back at my journal from that year and read today’s entry, November 29th 2013:

So today, from my view here in 2023 I just want to acknowledge the beautiful ways that God answered my prayers from 2013. Whether those prayers were whispered or begged or sobbed I don’t really remember, but I do know they came from a truly broken heart.

“Oh Lord, come and satisfy my desire in this scorched place and make my bones strong. Lord, please come and strengthen me. Give me endurance and patience.”

My God heard me. Every single prayer was gathered and acknowledged and answered. As I mentioned in my Facebook post from 2016, Psalm 10:17 says that God inclines His ear, He hears the desire of the afflicted and strengthens their heart. He did strengthen me and give me the endurance to get through those years.

And as I wrote in my journal ten years ago:
Isaiah 58:11 And the Lord will guide you continually and satisfy your desire in scorched places and make your bones strong; and you shall be like a watered garden, like a spring of water, whose waters do not fail.

Over the past ten years God has continued to guide me and satisfy my desires and strengthen me. I give Him all the praise, all the love and gratitude. Thank you, God, for the beautiful ways you have answered my prayers and brought me from a place of loss and grief to hope and life, like a watered garden, like a spring of water whose waters do not fail.

Since Lucy died, the outpouring of love on our family has been amazing. The support we have felt from our friends and family and even strangers has helped carry us through the darkest time of our lives. I couldn’t believe when we had hot meals delivered to our door for four whole weeks after coming home from the hospital. People helped take care of our children, they offered to do grocery shopping for me, to clean my house or do yard work. Beautiful flowers came to our door after Lucy died and our mailbox was full of sweet cards, letters, gifts, money, gift cards and books day after day. Several people paid for the Gideons to donate Bibles in memory of our Lucy Dair. I have been shocked by the generosity and love that other people have lavished on us.

My parents’ neighbor, Connie, who is an artist, wrote Lucy’s name and birth date with her foot prints and it is so beautiful.

One of my pastor’s daughters made me a prayer shawl while I was going through my high risk pregnancy. A prayer shawl is just a shawl that someone knits or crochets, and while they make it, they pray for you. I received the prayer shawl as Lucy was dying inside me after the blood transfusion. Those were some of the most terrifying, anxiety-ridden days of my life. I knew something was horribly wrong and Lucy wasn’t kicking. I slept with that prayer shawl every night until Lucy died, and it comforted me. I now picture myself wrapping my future miracle baby in this prayer shawl after he/she is born.

My friend, Melody, who makes the most beautiful, unique jewelry, art and accessories sent me this necklace (check out her shop.) It is so special to me. My boys love looking at it and naming each egg, “Liam’s egg, Asher’s egg, baby Lucy’s egg.” I love being able to celebrate the fact that I’m a Mom of three, even though I only have two with me.

My sister gave me this bracelet, that I love. I love wearing Lucy’s name on me, since I rarely get to say it. It’s very special to me.

My friend, Anna, who is a very busy woman with four little ones of her own, spent a whole evening showing me how to start a blog. I was so scared to start a blog, but she encouraged me to do it. Her help getting this blog started has been one of the most healing gifts I have received. She has an inspiring blog of her own, by the way, encouraging us Moms to be healthy, strong and happy. www.momstrong.org 

These are just some of the more personal gifts I have received. There is no way I can name all of the gifts people have given us. I know I have not thanked everyone personally and I’m embarrassed that I haven’t. My grief has truly taken over so much of my life, it has been hard to remember to thank everyone. I want you all to know that I am so thankful for all of the gifts of love. Thank you to every single one of you. You guys are amazing.

People have not only encouraged us with gifts, but with words that have lifted me out of the pit time and time again. I have had so many women tell me about their miscarriages and stillbirths and it has reminded me that I am not alone in my suffering. I know it’s hard and it’s awkward to talk to someone who is lost in their own grief. Thank you, to those of you who have. Your words have felt like a life raft being tossed out to me as I struggle to stay afloat. I have had several people say, “I don’t really know what to say to you, but I want you to know that I’m sorry and I’m praying for you.” Perfect. When I visited my family in Memphis my cousin Valerie said, “We want to hear all about Lucy. Don’t feel like you have to hold back.” It was wonderful. I appreciate every comment on my blog and Facebook posts about Lucy. Every single one of them is read and appreciated. I have had horrible days where I just can’t seem to stop crying and sometimes just one encouraging comment on my blog can lift me out of my grief fog. I’m so thankful for all the people who have prayed for us and for Lucy while she was fighting for her life. I know your prayers have given us peace and strength to keep going. I can never express how much all of you have helped me in my journey through this grief. Thank you so much, to all of you. Your love and support is irreplaceable.

So, you’ll never guess who contacted me this week…Kailee and Peter, baby “Scarlet’s” birth parents. The last time one of them contacted us was October 11th before the baby was born. After that, they completely cut off communication with us and ignored all of our attempts to contact them. Apparently they just now read my blog and the only reason they contacted us was to threaten to sue us if we didn’t immediately take down their names. I’m not surprised that they don’t want other people to know what they’ve done.

This post isn’t really about whether I took their names down or if they are going to sue me (they can’t, legally.) This post is about what I’ve learned from Kailee and Peter’s betrayal and how God has brought good out of it.

It was hard not to respond to their emails out of anger and disgust. I wanted to defend myself and point out all of the terrible things they did and completely lash out at them. I ALMOST wrote that email, but right as I was about to I heard a quiet voice telling me to sit and listen first. It’s hard to sit and be still and listen to God when your blood is boiling with “righteous” anger. I did, though, and I read these verses and they quieted me:

Psalm  37:7-9  Be still before the Lord and wait patiently for Him; do not fret when people succeed in their ways, when they carry out their wicked schemes. Refrain from anger and turn from wrath; do not fret- it leads only to evil. For those who are evil will be destroyed, but those who hope in the Lord will inherit the land.

Proverbs 29:22,23  An angry person stirs up conflict, and a hot-tempered person commits many sins. Pride brings a person low, but the lowly in spirit gain honor.

Do not fret. Those who hope in the Lord will inherit the land. What a burden lifted, what peace I have, knowing He will defend me. Revenge usually feels like the best choice, but forgiveness is so much sweeter. I forgave them already and because of that I am not eaten up with bitterness or hurt. Honestly, until this week, I have barely thought about them since last fall. I can focus completely on my family and give Liam, Asher and Nora the gift of a peaceful, happy Mama.

Not only have I realized how much peace comes with forgiveness, but I have also been able to see God’s providence clearly this week. When we first found out “Scarlet” would not be ours we were devastated. I not only felt betrayed by Kailee and Peter but I felt a bit betrayed by God too. Even though I was shocked at the evilness and cruelty of K and P, I could rationalize that they WERE human which means they are sinful and have the free will to do what they want. But how could I rationalize God allowing more tragedy in our lives, especially when we were just trying to obey Him and help people? I chose to trust Him anyway, a hard thing at the time. I still don’t have all the answers to my questions, but this week, after listening to Josh (the gentlest, kindest man I know) tell me about Peter’s angry voice mail on his phone, and after reading Kailee and Peter’s barrage of emails, I found myself thanking God that my family is not tied to these people for the rest of our lives. I am so relieved that I can just ignore them and that I don’t have to deal with them anymore. I have realized how grateful I am that God allowed our adoption to fall through. If we had adopted that baby, Nora would not be here today, kicking and growing and showing us all the power of God. If the adoption had worked out I would have continued breastfeeding and Nora never would have been conceived. We would have had to interact and communicate with Kailee and Peter for the rest of our lives. THE REST OF OUR LIVES, and the fact that I can now move on and our family never has to be affected by them again is a gift from God. Is it possible that all of those prayers that I prayed leading up to October, begging God to be good to our family, to BLESS us and to give us our baby girl might have been answered with a “yes” all along? When I was asking Him over and over again to protect our family from more tragedy, He knew the hearts of Kailee and Peter and He knew the best thing for our family was to break our ties with them. And maybe the very moment I thought God was betraying me was the moment He was giving me exactly what I asked for.

Well, that happened a lot faster than we expected but here I am, nine weeks and four days pregnant. Baby is due on our anniversary and my mother in law’s birthday, October 21st. Since it took at least 13 months to conceive Nora and I just turned 36 we thought it would take us a long time to get pregnant. I read online that it takes a year and a half for the average 36 year old to conceive. We were shocked to see two pink lines so quickly. It felt unreal, like something that happens to other people, not me. We are so thankful for this baby’s life.

The first night after I got a positive test I was overcome with anxiety. I didn’t tell Josh, just wanted to sit with the news by myself for a bit before telling anyone. The whole night it felt like I was wrestling with demons of fear, anxiety and doubt. I absolutely could not sleep. My mind went through all of the terrible things that happened to Lucy, all of the intense treatments and procedures I would have to go through, the worry I would have to live with day after day while this baby is in danger in my womb, the fact that some people will think we are ridiculous for wanting another baby, the cost of the medical treatments, all the times I will have to ignore my boys and my Nora to focus on taking care of this baby. SO MUCH FEAR. And then suddenly, words of hope came to me and I shouted them into the darkness in my mind, “And my God lightens my darkness. For by you I can run against a troop, and by my God I can leap over a wall.” And the voices of fear and anxiety and doubt immediately were silenced. Peace washed over me and I have been filled with an incredible peace about this baby ever since. I actually had to google the words the next morning to see if it was a real verse and it is from:

2 Samuel 22:29-37  For you are my lamp, O Lord, and my God lightens my darkness. For by you I can run against a troop, and by my God I can leap over a wall. This God- His way is perfect; the word of the Lord proves true; He is a shield for all those who take refuge in Him. For who is God, but the Lord? And who is a rock, except our God? This God is my strong refuge and has made my way blameless. He made my feet like the feet of a deer and set me secure on the heights. He trains my hands for war, so that my arms can bend a bow of bronze. You have given me the shield of your salvation, and your gentleness made me great. You gave a wide place for my steps under me, and my feet did not slip.

Josh and I have been praying specifically that this baby would be kell negative and that God would fill us with peace throughout the pregnancy. We have also been praying that God would not only give me courage to get through the pregnancy, but would allow me to actually enjoy the pregnancy since it will be my last. Just a couple of weeks after we found out we were pregnant our church had a “healing service” which wasn’t anything weird…they just called people who needed healing to come to the front for prayer if they wanted to. I felt compelled to go to the front even though no one knew about my pregnancy yet. Josh and I went to the front and I was prayed over by a few people. The main one who prayed for me was a woman who had lost a baby to full term stillbirth. She prayed over me for a couple minutes and then said, “I feel like God wants me to tell you that you will be filled with peace throughout this pregnancy and He wants you to ENJOY the pregnancy.” What a sweet word from God and confirmation that He has been hearing our pleas.

I want to write more but I’m out of time. Tomorrow I will have surgery in Atlanta to have a chest port placed and a neck catheter placed. The neck catheter will be for my upcoming plasmapheresis treatments and my port will be for my IVIG treatments. Please pray for peace and courage for me. During my last pregnancy the worst, most painful part of the entire pregnancy was the surgery to insert my permacath. The doctors changed their minds at the last minute and decided they didn’t want to give me any pain meds during the procedure. It was an excruciating, panic filled procedure. Please pray that they will give me appropriate pain medication this time and the baby will tolerate the procedure. I’ll try to update after the surgery and write a blog post with more details about my treatment plan.

Thank you so much for joining us yet again on another crazy pregnancy journey. We can’t wait to see what God is going to do.

I remember the day I gave my daughter back to God. It wasn’t the day she died. It was February 2nd, the day we learned that she was anemic and needed a blood transfusion. I knew how sick she was, she didn’t kick anymore. I had a dark, nagging feeling that Lucy would die. I wanted to hold on to her for dear life. I wanted to protect her and I so desperately wanted to keep her. I think the natural instinct a mother has to protect her child is the strongest in human nature. I couldn’t imagine my baby dying inside of me, my womb becoming a coffin. I begged God to let me keep her. I screamed, “I want her. I want her. I want her.” Over and over again I asked God to save her, to let me be her Mommy here on earth. I threw a tantrum, down on my knees crying out to God to save her. It would be so easy for him to save her. He listened until I exhausted myself and then he said, “Let me have her. I will take care of her.” Could I give her up to him if that was what he wanted? Why would he let her die? I didn’t understand, but I trusted him. I thought of God letting go of his only son to die a violent death. I thought of Abraham with his miracle baby that he waited 100 years for. He was willing to give him back to God, even willing to slaughter him himself. If they could do it, I could do it. What was the purpose of my life, after all? It is to glorify God and enjoy him. The purpose of my life  is not to keep my daughter or to get what I want. I released my death grip that I (thought I) had on my daughter. I told him “Ok, you can have her. If it means that you will be glorified through her death, then you can have her.” I felt peace because it wasn’t in my hands, it was in his. I knew he would take her, and he did a week later.

Even though I am a blubbering mess here on Earth, I know Lucy is ok in heaven. She is well cared for, she is loved by her creator. I don’t worry about her. Soon after I returned home from the hospital I was so heartbroken for my girl, missing her and worrying about her. I was sobbing for my baby, praying for God to help me. I felt like God said, “I have her with me now. She’s right here. She’s fine. I’ve got her.” It was so good to realize that I can mourn my loss and feel empty for myself, but not for Lucy. She is happy and safe and my protective mother-heart can rest easy.

When my Mom was in the waiting room and I was in labor, waiting for Lucy to come, she asked God to show her a verse for Lucy. He showed her this:

Isaiah 66:12,13     And you shall be nursed, you shall be carried on the hip and bounced on the knees. As one whom his mother comforts, so I will comfort you.

* If you are dealing with anti-Kell antibodies and are searching for information, don’t be scared or discouraged by my story. Your baby will probably be fine as long as you educate yourself and make sure you and your baby get the correct treatment. Make sure to check the bottom of the page for the steps you need to take to ensure you are getting the best treatment possible. For more resources check out The Allo Hope Foundation.

Before developing anti-Kell antibodies, I had two normal pregnancies and delivered two healthy baby boys, both born at 41 weeks. When I was pregnant with my third baby, I discovered at nine weeks that I had anti-Kell antibodies. I had never heard of anti-Kell antibodies and couldn’t find much information online. It was terrifying. Long story short, I have had four Kell sensitized pregnancies with VERY different outcomes. Lucy was stillborn halfway through the pregnancy. My next baby, Nora, was born healthy at 37 weeks 6 days and has no lasting effects from the antibodies that tried to kill her in the womb. After Nora we had Callum, who was born at 34 weeks 4 days and is now a healthy, super smart preschooler. Our last baby, August, was born at 37 weeks 1 day and is a healthy one year old now. Over the past nine years I have done a lot of research and asked a lot of questions, and I now have a much better understanding of this disorder than when I was first diagnosed. I will do my best to explain anti-Kell antibodies and how they work. The more you understand, the better you can advocate for your baby and keep your baby safe.

Disclaimer: I am not a doctor or a medical professional. This is what I understand about anti-Kell antibodies.

Kell is an antigen found in some people’s blood, so basically it’s kind of like a blood type. It’s not dangerous at all. My husband, Josh, and my children, Asher, Lucy, Nora, Callum, August and possibly Liam all are positive for the Kell antigen. About 9% of Caucasians are Kell antigen positive. I don’t have the Kell antigen, and that’s where the trouble begins. My pregnancies with Liam and Asher were totally normal and healthy because I did not have anti-Kell antibodies yet. When I gave birth to Asher (who has Kell antigen positive blood) some of his blood leaked out and mixed with my blood. This is normal during childbirth, especially a vaginal delivery of a 10 lb baby! Because my blood is Kell negative, my body saw Asher’s blood as something foreign and dangerous. My body thought Asher’s blood was a virus, even though it wasn’t. When our bodies get a virus we make antibodies. Antibodies are like the soldiers who go and kill the virus. When we get vaccinated we are injected with a little bit of the disease, then our bodies produce antibodies to kill it. After the vaccination, our bodies are well armed with antibodies to kill the disease and that’s what keeps us safe. So, because my body thought Asher’s Kell positive blood was a virus, I produced anti-Kell antibodies to destroy it. The antibodies I produced were specifically designed to find and destroy red blood cells containing the Kell antigen. This is called being sensitized. It didn’t hurt Asher because it happened right as he was being born. He got out just in time. There is another way that women can become sensitized. If a Kell negative woman is given a blood transfusion with Kell positive blood, her body could react the same way mine did when I gave birth to Asher- by creating antibodies as a response to being exposed to Kell positive blood. There are also recent studies that show that intravenous drug abuse can possibly cause sensitization as well.

My husband found out through a simple blood test (done by my regular OB) that he is heterozygous for Kell, which means he has the recessive gene. This just means that each one of our kids had a 50% chance of being Kell positive like Josh or Kell negative like me. The only way the antibodies can hurt the baby is if the baby is Kell antigen positive. If the baby is Kell negative, the antibodies cannot affect him/her and it will be a “normal” pregnancy. With each pregnancy we were hopeful that our baby would have my blood type, but we always got the wrong 50% because our last five kids have all been Kell antigen positive. If Josh had been homozygous for Kell, our kids would have all had a 100% chance of being Kell positive. Most people who are positive for the Kell antigen are heterozygous like my husband.

My body will always produce anti-Kell antibodies, I can never get rid of them. I have basically been vaccinated against my husband’s blood type, so anything inside my body with his blood type will be attacked by my antibodies. Unfortunately, like I mentioned earlier, Lucy got her Daddy’s blood type. She was Kell positive. She was a healthy, kicking girl throughout the first trimester and the beginning of the second. Babies don’t produce their own red blood cells until the end of the first trimester/beginning of the second. When Lucy started making her own blood, my anti-Kell antibodies crossed the placenta and recognized her blood as something dangerous. The antibodies started attacking and destroying her red blood cells. This can make the babies become anemic and eventually can cause fetal hydrops or even death if the fetal anemia is untreated. Thankfully, with the correct monitoring, fetal anemia can be caught in time to treat before it becomes severe.

The way the anti-Kell antibodies are measured is something called a titer (pronounced “tight-er”.) The titer shows the amount of antibodies in the mother’s blood. When a mother’s titer reaches 4 it becomes critical for the baby. This just means that the antibodies can affect the baby at that level. My titer was 1,024 from the very beginning of my pregnancy with Lucy. Titers can be expressed as a ratio like this 1:16 or just the number itself, 16. A titer of 1:16 and a titer of 16 mean the same thing. The critical titer for Kell is 4 and the critical titer for all of the other antibodies is 16. I have heard different “facts” about antibody titers from different people. Some believe that the titer rises as the antibodies attack the baby, so a rising titer indicates a Kell positive baby, and a low titer indicates a Kell negative baby. Some believe that every subsequent pregnancy will be more dangerous because the titer will be higher. The one thing about titers that everyone agrees on is that they are unpredictable and are not to be trusted. My titer never changed throughout my pregnancy with Lucy, during the two years when I wasn’t pregnant and during my pregnancy with Nora, who was Kell positive also. It has always been 1,024. It did go down to 512 with my last baby, Callum, and was 256 at the end of the pregnancy. Before I got pregnant with August we tested my titer and it was 2,048, the highest it had ever been. In general, the higher the titer, the more dangerous it is to the baby, for example, we can assume that a woman with a 1,024 titer will have a much higher chance of having an affected baby than a woman with a titer of 2. However, the extent to which the baby is affected relies on several different factors besides the titer- how aggressive the antibodies are, how the baby handles the antibodies, whether there are other antibodies present, the baby’s gender (girls tend to do better than boys, supposedly) and especially, the monitoring and treatment given during the pregnancy. Just because your titer is very high, it doesn’t mean you are going to lose your baby, and it doesn’t mean your baby is Kell positive. Just because your titer is low, it doesn’t mean your baby is safe and it doesn’t mean your baby is Kell negative. The best thing you can do for your baby is find a good MFM (maternal fetal medicine specialist) who is knowledgeable about these antibodies (or who is willing to learn), educate yourself on the disease and make sure you are getting the right treatment and monitoring during the pregnancy. I had the same titer with my daughter Lucy and with my daughter Nora. With Lucy I did not receive the right monitoring and treatment, so she was stillborn. With Nora I did receive the right monitoring and treatment from very experienced MFMs and she is now a healthy little girl. My sons, Callum and August, also received the correct monitoring and treatment and they are perfectly healthy now.

So what does the monitoring and treatment look like? Babies should be monitored very closely and can be given an intrauterine blood transfusion if they become anemic. Regular ultrasounds or even in depth level 2 ultrasounds cannot detect fetal anemia, unless the anemia is so severe that it has started compromising baby’s organs or fetal hydrops has started. The goal is to discover and treat the anemia before it ever gets to that point. Doctors can detect and measure fetal anemia by doing an MCA doppler scan. MCA stands for middle cerebral artery. It’s the central artery in the baby’s brain. A really powerful ultrasound is used to measure the blood flow through this artery. If the blood is moving too fast, they know the baby is anemic. They give the baby an MoM (multiples of median) score that shows how anemic the baby is. The median MoM is 1. If the baby’s MoM starts creeping up and gets to a 1.5 that means he/she is anemic. Once the MoM is 1.5 or over, the doctor should do an intrauterine blood transfusion (IUT) on the baby to resolve the anemia. Usually babies aren’t affected until late in the second trimester or early in third trimester, but in extreme cases they can be affected as early as 15 weeks. The baby can’t be harmed by the antibodies in the first trimester. The earliest loss I have seen from these antibodies was at 14/15 weeks, although some women say they have lost babies as early as 13 weeks. Lucy had her first MCA scan a day or two before 18 weeks and her MoM was 2.5. She was severely anemic. They did an IUT on her the next morning. My baby Nora had her first MCA scan at 15 weeks and weekly after that. She had 5 IUTs. My son Callum had his first MCA scan at 14 weeks and had 3 IUTs. Baby August had his first MCA scan at 14 weeks and needed 7 IUTs. If you have a critical titer, you should start MCA scans by 16-18 weeks and have them done weekly to check the baby for anemia. If you have a titer in the hundreds or thousands it is best to start MCA scans by 16 weeks.

When an IUT is performed, the doctor basically sticks a really long needle through the Mom’s belly into the uterus and into the baby’s umbilical vein. They put fresh, Kell negative blood packed with red blood cells into the baby. If the baby is too small and the doctor can’t get into the vein they just stick the needle into the baby’s abdomen and put the blood there (called an IPT.) The blood placed in the baby’s cord relieves the anemia immediately. The blood placed in the baby’s abdomen is absorbed over the following days/weeks and can act as a reserve, slowly filling baby up as she becomes anemic over time. Some doctors prefer to put blood into the baby’s cord and belly to resolve the anemia immediately and give baby a future reserve of blood in order to get more time between IUTs. Some doctors prefer to only put blood into the cord and will need to perform the next IUT sooner. If you want to know more about the IUT procedure you can read about my transfusions with Nora here. Dr. Moise always rescanned Nora the day after an IUT to make sure she handled the procedure ok. Dr. Trevett also scanned my babies 24 hours after every IUT. Usually, if there is a complication from the IUT it happens within the first 24 hours after the procedure. My little Lucy was left for seven days after her IUT before they would scan her to see how she handled the procedure. Make sure you only let experienced MFMs perform your IUT.

Some women have extremely aggressive antibodies, so the concern is that the baby will become anemic before she is big enough to have an IUT. Only very skilled and experienced MFMs can perform a successful IUT on a baby younger than 20 weeks. The smaller the baby, the more difficult and dangerous the procedure is. One way to protect the baby until she is big enough for an IUT is to give the woman plasmapheresis and IVIG treatments or IVIG alone. With Nora, Callum and August I started plasmapheresis and IVIG around 10 weeks and the treatments saved their lives. These treatments are usually only given to women who have had a previous loss or a severely affected baby in a previous pregnancy, or women with extremely high titers.

One last thing- a lot of people ask me why I couldn’t get “the shot” to prevent my body from making the antibodies in the first place. There are many different types of red cell antibodies, and the most common type is anti-D antibodies (Rh disease.) Because it’s so common they developed a preventative shot called RhoGAM that can be given to a pregnant woman before she develops antibodies and it keeps her baby safe (although it does fail at times and some women still end up developing anti-D antibodies.) There is no preventative shot for Kell. After Lucy died I asked my doctor why they haven’t developed a preventative shot for Kell like rhoGHAM. He said it doesn’t affect enough people and isn’t profitable for the pharmaceutical companies.

UPDATE- Dr. Moise is currently working on a new treatment for women with anti-Kell antibodies (and other antibodies.) There might ACTUALLY be a shot one day that can protect these babies from anti-Kell antibodies. You can learn more about this possible new treatment HERE.

* For women with anti-Kell antibodies: Please don’t be scared by my story. What happened to Lucy is VERY rare, almost unheard of. Your baby will probably be fine as long as you make sure you are getting the right treatment. I’ve heard that most babies in a Kell sensitized pregnancy have a great survival rate. If you just found out you have anti-Kell antibodies you need to do several things:

• Find out what your titer is
• Have the baby’s father tested for the Kell antigen (NOT anti-Kell antibodies)
• If the baby’s father is Kell antigen negative, the baby cannot be harmed by the antibodies and is safe.
• If he is positive for the Kell antigen, have him phenotyped to find out if he is homozygous or heterozygous for Kell to know if your baby has a 100% chance (homozygous) or a 50% chance (heterozygous) of being Kell positive.
• Get a referral to an MFM
• If you have a titer of 1:4 or higher, make sure you have your first MCA scan between 16-18 weeks and weekly after that. If your doctor wants to wait until after 18 weeks for the first MCA scan, you should insist on it and if they won’t budge, ask to be referred to a hospital that will. With Nora, I had my first MCA scan at 15 weeks.
• Buy a notebook or journal and keep it with you at every appointment and every procedure. Write down all the information your doctor gives you. Think of all the questions you want to ask before each appointment and have them written down in the notebook. Write down all the answers. (I also had encouraging Bible verses written down that helped a lot.)
• Remember that YOU are the only person who can speak for your baby. You are your baby’s voice. If you are unsure about something, don’t be afraid to ask the doctor. If you feel like something might not be right, go in immediately and have your baby checked out. Don’t be scared to look stupid or be annoying. That doesn’t matter when you compare it to the worth of your baby’s life. Read this post to avoid making this very common and dangerous mistake many women make.
• If you have lost a baby to antibodies before, have had a severely affected baby before or have an anti-Kell or anti-D titer in the hundreds or thousands, read THIS
• Feel free to email me or private message me on Facebook if you have any questions about anti-Kell antibodies:  [email protected] or just ask your question in the comment section below.
• Remember that ultimately your baby’s life is in God’s hands. Try to rest in the fact that He loves your baby more than you do.

Yesterday we had a combination birthday party for Liam (turning 6) Asher (turning 4) and my niece, Camille (turning 7.) At the birthday party we revealed the gender of our miracle baby. Josh’s family was visiting from South Carolina, so they got to be there too. It was so fun. Since the birthday party was lego themed I made cake pops in the form of lego heads with the gender color hidden on the inside.

Everybody bit into the cake pops at the same time and…….

We’re having a baby GIRL!

My little brother John is pretty excited about another niece.

Liam said he knew it was a girl all along 🙂 Asher is still holding out for a boy who he says will be named “Naeus.”

It was such a fun weekend, being able to celebrate our boys and our niece and our baby girl. I think everyone felt lighter with the knowledge that baby girl is doing ok for now and is not in distress. We usually don’t announce the baby’s name until birth but we are announcing our daughter’s name now because we would love for people to pray for her by name. We don’t have a middle name yet (we’re trying to decide between three that we love) but her first name is NORA ❤ It means “light” just like her big sister Lucy. Here we are right after the gender reveal. Nora is in there, I promise, she was just hiding I guess.

We are so thrilled to be having another daughter and we are constantly asking God to let us raise this one on earth. Please continue to pray for our little Nora, who has to overcome such great odds just to get here safely. My next MCA scan is on Monday and I will probably be doing the amniocentesis then too. Please pray that Nora is not anemic tomorrow and that the amnio goes smoothly. Thank you for celebrating our Nora with us!