Anti-Kell Antibodies: The worst mistake you can make.

Disclaimer: I am not a medical professional. This is what I have learned about this complication over the past few years through my experiences, through the wisdom shared in the Iso Moms group and through my research.

I still remember hearing the words, “There’s a problem with your blood work.” It was my first ultrasound and first OB appointment with my third child. I was nine weeks along. I had had no complications with my first two pregnancies so I was not prepared to hear those words. We had just seen baby Lucy on the ultrasound for the first time and everything looked perfect so I thought we were in the clear. I couldn’t really understand how my first trimester blood test results (taken at six weeks) could possibly cause any problems for the baby. The expression on my OB’s face made my heart sink, though. He sat down and tried his best to explain anti-kell antibodies to me but I didn’t understand everything he told me. He had been in the field for almost thirty years and I was his first patient with anti-kell antibodies.

It is so scary to suddenly be told that your pregnancy is “high risk” and your baby might be in danger. Most parents who are faced with this reality go home in shock and have to make the big decision that is weighing on their minds, “Do I dare Google it? Or do I protect myself from unnecessary worry and avoid the computer and trust my doctors to handle it?” Most well meaning family members and friends encourage the terrified parents NOT to Google it. I had to look it up on my computer as soon as I got home because I honestly had no idea what my OB was talking about. I wanted to know what I needed to do to protect my child and I was desperate for some idea of what the rest of my pregnancy would look like. Unfortunately there was hardly any information available so I felt lost.

I have learned so much since that day four years ago. I have heard countless stories and watched many pregnancies play out and I have noticed a trend. There is one mistake many women make during an iso (isoimmunization/alloimmunization) pregnancy. I made this mistake with Lucy, unfortunately, and it is the main reason she is not here with me today. Because of what happened with Lucy, I knew not to make this mistake again when I got pregnant with Nora and now she is a happy, healthy one year old.

So, what is the biggest mistake most people make once they discover that they are sensitized and have anti-kell antibodies (or other red cell antibodies) during pregnancy?

BLINDLY TRUSTING YOUR DOCTOR

I want to be clear before going any further, that I admire and respect doctors so much. I have always been amazed at their courage and confidence in the midst of dangerous, stressful situations. Often one small mistake can mean the difference between life and death. I don’t think I could ever do what they do on a daily basis. But, there has to be a balance. We are trained in our culture to trust our doctors and almost view them as gods. We are taught not to question them. The truth is, they are human, just like us. Isoimmunization during pregnancy is a very rare condition and most doctors and even maternal fetal medicine specialists do not see many cases on a regular basis. This does not mean that they are bad doctors, it just means that they don’t have much experience treating this condition. The treatments and protocols for iso pregnancies are constantly evolving and improving and many of them are fairly new. This means that many of the protocols in place around the world today are not up to date.

There is only one hospital in my whole state (Alabama) that treats pregnant women with anti-kell antibodies. When I was pregnant with Lucy they told me that they don’t start MCA scans until 20-22 weeks at the earliest. At my first appointment I remember sitting in the exam room waiting for the MFM (maternal fetal medicine specialist) to come in and introduce himself. Before he came in I heard him take my chart off the door and flip through it. “Anti-kell antibodies… What’s the critical titer for anti-kell?” No one answered him, so he asked down the hallway, “Does anybody know the critical titer for anti-kell?” I had done a little research online and I knew it was eight. “It’s eight,” I thought.  After several doctors discussed it they decided it was eight and then he entered the room and introduced himself. I felt very uneasy. Why didn’t he know the most basic fact about this condition? Why did I know it and he didn’t? He was supposed to be the one who was going to educate me on the condition and he was supposed to be the one who was going to protect my baby. He was the “expert” though, and the one with the medical degree so I trusted him with my baby’s life. He told me that my baby would be safe since it was my first sensitized pregnancy. Even though my titer was very high (1,024) they said the baby would probably be fine. I asked if there was a way to protect the baby from the antibodies but they said there wasn’t and that she would be ok. I had researched and found some information about plasmapheresis and IVIG so I asked the MFM if we could try it. They said it wouldn’t work, it was just experimental and I couldn’t and didn’t need to try it. The insurance wouldn’t cover it anyway unless I had lost a baby already. I let it go and trusted the doctor. (I found out later that my insurance would have covered the treatments for Lucy.)

We had many people tell us how blessed we were to be going to the best hospital in the state. We were told they were the experts and were very qualified MFMs. Looking back, I see now that the protocols and treatment options at this hospital for iso pregnancies are out of date and desperately need to be updated and changed. Waiting until 20-22 weeks to start MCA scans with a critical titer (especially one in the thousands) is extremely dangerous and reckless. I had seen online that most women had their first MCA scan by 18 weeks, some as early as 15 or 16 weeks. When I brought that up to my MFM he said they didn’t do them that early because even if the baby was anemic, there was nothing they could do for the baby that early. They told me IUTs (intrauterine blood transfusions) can’t be done until 20-24 weeks at the earliest. Again, I had read several accounts online of women having successful IUTs as early as 16, 17 and 18 weeks. But that instinct to trust the doctor and not to question or doubt their expertise remained in me and I felt very uncomfortable. I didn’t know what to do.

Many women find themselves in a similar situation. I get questions all the time like, “I have a very qualified MFM but he says I don’t need weekly MCA scans, even though my titer is critical. I don’t know what to do.” Or “My MCA scan was 1.56 but the doctor said he wants to wait a week and recheck next Tuesday. Should I ask to be seen sooner? He insisted that it would be ok to wait a week.” Or “My MFM is doing monthly titer checks and will start MCA scans when my titer hits 32. You are saying the critical titer for anti-kell is eight but my doctor disagrees.” I’ve even heard extremely confused doctors give advice such as, “Don’t worry, these antibodies can’t cross the placenta, so your baby is safe and doesn’t need to be monitored.” Or, on the opposite end of the confusion spectrum, “Since you have anti-kell antibodies you can’t have any more babies because it’s too dangerous…the fact that you were sensitized by a blood transfusion and your husband is kell negative is irrelevant.” Almost every time I hear a story about a woman losing her baby to this disorder it is because the proper treatment or monitoring was not performed.

I am not saying that you shouldn’t ever trust your doctor or MFM but YOU have as much authority as the doctor does when it comes to treatment plans and monitoring for your baby. You have to work together with the doctor to make sure your baby gets the best treatment possible. It should be a partnership between you and your MFM, a partnership in which you feel comfortable asking questions if there is concern about the treatment plan and one in which decisions are made together by you and the MFM. Ideally all of healthcare should be a partnership and patient education and involvement should be encouraged. If the doctor does not invite you to be part of the decision making process, insert yourself into the discussion. You will have to work hard and fight for your baby. Do your research (I will hopefully be adding more info here on the blog soon), join the Iso Moms facebook group (find me on facebook- Bethany Weathersby), make sure you understand isoimmunization/alloimmunization and how it affects your baby, write information down in a notebook, print off important facts and studies, and bring it all with you to your first appointment with your MFM. Never be ok with vague test results like, “You have a high titer” or “The MCA scan shows that the baby’s anemia is in the safe zone.” You cannot let the MFM make those calls since their information and protocols might be out of date. Ask for your exact titer and at every MCA scan ask for the PSV results or the MoM number and always write it down. Then YOU decide if your titer is critical or if the MoM is in the safe zone. If you are having an IUT, ask for the beginning and ending hematocrit at the start and the end of the procedure. Obviously there are tests that you cannot interpret because you are not a professional (like certain ultrasounds) but when it comes to numbers and blood levels there are exact numbers to look for or be wary of. If you aren’t sure, ask the women in the Iso Moms group. My MFMs here in Alabama see 1-2 kell cases per year at the most. The women in the Iso Moms group sees hundreds of cases per year. Be respectful and listen to the MFM but make sure that the treatments or lack of treatments he suggests match up with the information you have. Don’t be afraid to speak up if you have questions or if the MFM says something you disagree with. I know it is hard to make a suggestion to the expert or to doubt something he says, but you have to do what it takes to protect your baby. If your baby dies, they probably won’t remember your child’s name months, weeks, or even days later, but you will be broken for the rest of your life. You are one of many patients they see on a regular basis, but this is your one and only baby who can never be replaced. The mama bear instinct that was born in you the day you found out you would be a mother was placed in you for such a time as this. Harness that power and that primal need to protect your baby. Who cares if the MFM thinks you are pushy or arrogant or annoying? Your baby is depending on you. Never be afraid to speak up.

After Lucy died and I got pregnant with Nora I went back to the same MFMs that treated Lucy since they are the only ones in the whole state. I had Dr. Moise’s study on plasmapheresis and IVIG printed off and I had come up with a treatment plan (thanks to the Iso Moms group and Dr. Moise) that I was confident about. I listened to their treatment plan first, which was, “Well, you have a 50/50 chance of having a kell positive baby. Let’s hope the baby is negative. We want to see you back at 16 weeks for a check up.” If I had gone with their plan, Nora would be dead. I explained that I did not feel comfortable with their plan for my baby and I wanted to try Dr. Moise’s treatments instead. They were not excited about my suggestions. There were deep sighs and eye rolls and smirks at the corner of the mouth. I hated being the pushy one, the annoying one, the one they would all talk about later, but Lucy had lit a fire inside me that enabled me to fight with every fiber of my being for this new baby of mine. I don’t want you to have to lose a baby first before you learn that you HAVE TO FIGHT for your baby’s life. I want to light that fire in you now. Your baby deserves the best chance of life possible and your baby deserves a mama who is willing to look stupid or be annoying to save his or her life. Your child’s life is worth it. You can do this.

So, when my MFMs were less than thrilled about my treatment suggestions  I told them if they were not ok with it, that was fine, I would leave the state and find a doctor who would do it. I gave them Dr. Moise’s contact information and the study I had printed off. They said they needed time to think about it. One MFM said he would be willing to do the IVIG portion of the treatment plan, but not the plasmapheresis for some reason. Thankfully I had my first appointment with them at six weeks since we knew my antibodies were so severe, so I had time to let them discuss it and make a decision. The MFM contacted Dr. Moise to discuss the treatment and agreed to start plasmapheresis and IVIG at 11 weeks to prevent Nora from becoming anemic. The MFMs and nurses did put a lot of work into setting these treatments up and getting my insurance to cover it. I am so thankful that the MFM contacted Dr. Moise and decided to try something new because it saved my child’s life.

There have been times when I disagreed with an MFM on something, but I had to be the one to back down. It is a delicate balance, knowing when to fight and when to trust. With Nora, I desperately wanted to double my IVIG because her first MCA scans (15 and 16 weeks) were around 1.3-1.4 (some between 1.4-1.5) so I thought she was getting anemic already. My MFM said that he wouldn’t do it. I fought and pushed and pestered him, but he really didn’t feel comfortable with it. I thought it was a death sentence for my baby but after he contacted Dr. Moise and his decision was backed by the expert, I had to relent. It was HARD to let go and trust them, but I did and they were right. The IVIG did not need to be doubled. After I moved to Houston at 18 weeks and Dr. Moise took over my care, I was terrified because he only wanted to do one MCA scan per week. In Alabama they had been doing two per week. I told him it made me uncomfortable to wait a whole week between scans but he insisted that the baby would be fine until the next scan. I wasn’t sure if I should fight for more scans or trust him. I had to purposefully think through my emotions; I was so anxious about my baby that I was trying to be in control to feel safer. I considered my MFM, Dr. Moise, and acknowledged that there were no red flags so I could trust him. When I told him how nervous I was with his decision to scan only once per week he didn’t brush my concerns off. He listened and then he showed me specific things on the ultrasound that assured him Nora wasn’t anemic or in distress (her heart was not dilated at all, there were no signs of fluid building up in any of her organs, her bowels looked normal, my amniotic fluid levels were normal, her heart rate was good and she was active, the MoM was under 1.5.) I felt better after he pointed out exactly why he was ok waiting a week to rescan. I submitted and agreed to scan once a week and he was right. My baby Nora was fine. So, fight for the basics, speak up and trust your instincts, ask lots of questions and remember that sometimes you have to be the one to back down, as long as the MFM is trustworthy, doesn’t have any red flags and is following the basic treatment protocols.

There are certain red flags you can watch for when you first meet your MFM. If you see several red flags, look for a new MFM as soon as possible, even if it means you have to travel several hours to find the right one. We had to travel eleven hours away and relocate for five months to find the right MFM for us and it was completely worth it. You wouldn’t hire a babysitter that you didn’t know and weren’t sure about so be assertive about who you are trusting with your baby’s life.

Red Flags to Watch For:

  • The information given by the MFM does not match up with the basics* listed at the bottom of this blog post.
  • The MFM acts insulted and irritated when you ask questions or when you challenge something (s)he says.
  • The MFM is too busy or proud to listen to all of your concerns and answer all of your questions.
  • The MFM is not willing to learn new information from sources you bring in or consult with other doctors at a different hospital.
  • The MFM is only willing to do the minimum amount (or less) of monitoring required.
  • Your MFM is not willing to let you be part of the decision making process and does not share specific test results with you.

Notice, none of the red flags refer to lack of experience with iso pregnancies. Even doctors who have rarely encountered this disorder can be wonderful MFMs as long as they are humble and willing to learn about it (except when it comes to the actual surgical procedures like IUTs and amnios. Only let very experienced MFMs perform those procedures on you.) Some of the most proactive MFMs I’ve read about are those who started off not knowing much about iso pregnancies or how to treat them. They did their research, contacted other doctors, asked questions, listened to their patients, referred their patients to more experienced MFMs when necessary and were willing to try new treatments to save the babies, and they did.

*Here is a reminder of the basics. If your MFM doesn’t agree with this information, consider that a red flag.

  • The only way you can become sensitized to the kell antigen is from a previous pregnancy (or occasionally your current pregnancy) or a blood transfusion.
  • You need to know as soon as possible what your antibody titer is and you need to know what the critical titer is for your particular antibody. (Critical titers: anti-kell:8, anti-D:16, anti-c:16)
  • Your baby can only be affected by your antibodies if (s)he is kell positive.
  • The baby’s father should be tested for the kell antigen (NOT the antibodies!) as soon as possible.
  • If the baby’s father is negative for the kell antigen, then the baby has a 0% chance of being kell positive, which means the baby cannot be harmed by your antibodies.
  • If the baby’s father is kell positive, he needs to be phenotyped to see if he is homozygous or heterzygous for kell.
  • If the father is homozygous, the baby has a 100% chance of being kell positive.
  • If the father is heterozygous, the baby has a 50% chance of being kell positive.
  • You should have an appointment set up with an MFM by 16 weeks at the latest.
  • If your titer is below critical you need to have your titer checked regularly and an MCA scan done at some point to check the baby for anemia.
  • Titers do not always predict how aggressive the antibodies are, but often, high titers mean the baby is in more danger.
  • If your titer is 8 or above, MCA scans need to start between 16-18 weeks. No later than 18 weeks!
  • If you have a titer in the hundreds or thousands, you should have your first MCA scan at 16 weeks. I had my first one with Lucy at the end of my 17th week and it was too late by then. I had my first MCA scan with Nora at 15 weeks.
  • Just because it is your first sensitized pregnancy, it doesn’t mean the baby won’t be affected. I lost my baby in my first sensitized pregnancy.
  • The most accurate way to know for sure whether the baby is kell negative or kell positive is to do an amniocentesis around 16 weeks. Some doctors insist on doing the amnio, other doctors refuse to do it. The choice is up to you and what you feel comfortable with. You can also do a non-invasive maternal blood test to find out whether baby is kell positive or kell negative at 14 weeks.
  • You usually don’t HAVE to know whether the baby is kell positive or negative. The doctors can monitor baby as if (s)he is positive since the methods used to monitor are safe and non-invasive.
  • If your titer is critical, you should have MCA scans every week. Fetal anemia can develop very quickly so waiting over one week to do an MCA scan is putting your baby at risk.
  • When the doctors do the MCA scans, they also need to check for other signs of anemia or distress in the baby (dilated heart, echogenic bowels, ascites/fluid starting to collect in the organs, excess amniotic fluid, signs of distress, etc.)
  • If the MCA scans are showing an upward trend or are getting close to 1.5, the MCA scans can be done twice a week.
  • When your MoM gets to 1.5 or over you need to have an IUT (interuterine blood transfusion.)
  • The IUT needs to be performed by someone who has had experience performing the procedure.
  • If you have already lost a baby to these antibodies or a previous baby was seriously affected or you have a titer in the thousands, plasmapheresis and IVIG should be considered. With a little work, most insurance companies WILL cover these treatments. Here is the study Dr. Moise did proving the efficacy of these treatments for severe isoimmunization/alloimmunization in pregnant women.
  • If your baby becomes anemic very early in the pregnancy, an IUT can be performed by putting blood into the baby’s belly (IPT) instead of the umbilical cord (IVT.) You should also start IVIG treatments right away. I have seen severely anemic, hydropic babies at 16 weeks saved because the mother was started on IVIG right away. The anemia disappeared and the fetal hydrops resolved because of the IVIG.
  • Babies should be checked the day after the IUT to make sure they aren’t in distress. My MFMs insisted that Lucy did not need to be rechecked for a whole week after her IUT (even though her beginning hematocrit was six, which is extremely low.) She was dying that entire week and by the time they scanned her again it was too late. Nora (my rainbow baby who survived) always had an ultrasound 24 hours after her IUT.
  • In severe cases, IUTs can be performed only days after the first one if the baby needs it.
  • After the baby is viable, many doctors recommend steroids to develop the baby’s lungs before an IUT is performed. If an MCA scan is done after the steroids have been administered, it usually will give a false low number. The MoM will be lowered but the baby will still be anemic.
  • Here is information regarding after birth care for your baby . You can print this information off and ask if your MFM agrees with it, but often it is a neonatal team dealing with baby at that point and not so much the MFM so it might not be as relevant.

I would like to end this post by saying if you have lost a baby to these antibodies, I am so very sorry. If your baby died because (s)he did not get the right monitoring and treatment, the last thing I want you to feel is guilt. I know how hard that is, though. Lucy would probably be alive today if she had received the care Nora received and I have struggled a lot with guilt because of it. I know that when I was pregnant with Lucy, I did my very best to save my baby. I did everything I knew how to do and I know that you did too. We honor our babies’ lives by using their stories to prevent other babies from going through the same thing. Our babies felt nothing but love from us their whole lives and we should hold our heads up proudly knowing that we did the best we could to save them at the time.

This blog post was written in loving memory of:

HUDSON JOSEPH HERDMAN

LUCY DAIR WEATHERSBY

RYLEE ANN-MARIE

EPHREM FABIAN MEYER

KRISTIAN MICHAEL PINEDA

JULIA MARIE GETTMAN

GRACE DAISY MARIE PUCHMEYER

GABRIEL ZACHARIAH LUCAS

ADALYNN FAITH LUCAS

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Four Years In Heaven

Oh my baby, how I miss you. Every day, every minute for these past four years I have ached for you. That chamber of my heart that is only Lucy shaped remains empty. I know how your biggest brother Liam feels in my arms, how your big brother Asher feels in my arms and how your baby sister Nora feels in my arms, but I don’t know how you feel and my arms ache for you. A mama’s arms belong around her babies. I wish you could be here to play with your little sister Nora, you would love her so much. Your absence in our family is felt every single day. I see the space where you should be that nobody else sees. I miss you.

I miss you.

It has been four years since Lucy’s heart stopped and mine was irreparably broken. It is a feat, surviving four whole years without your child. I feel like I should be awarded a medal just for still being here, four years later, without her. The beautiful thing about living this life with my God is that He has more for us on this earth than just surviving. The past four years have been the saddest and most difficult of my entire life, but they have also been the most beautiful, the most redemptive, and the most productive years of my life.

As most of you know, when Lucy died I was told I could not have any more babies. It felt like an extra cruel blow because of who God had created me to be. He made me very maternal from infancy. I have always been obsessed with babies. They were the best thing in the world to me. My undergraduate degree is in Early Childhood Education. I was told that a degree in Elementary Education would be more useful so I eventually agreed to go one more semester to also get my Elementary Ed degree, but all I really cared about was getting that Early Childhood degree because I just wanted to teach the babies. My whole life I waited and dreamed about having a baby of my own. I wanted to fast forward time until I held my baby in my arms for the first time. My greatest wish for my life was to have a big family; LOTS of babies. For God to allow my baby to die and then to leave me with a pregnancy condition that would repeat itself and make my pregnancies “fatal” seemed so cruel. It felt like a custom made attack, designed to destroy the most beloved part of who I was.

I couldn’t even look at babies after Lucy died, they physically nauseated me. During my counseling sessions I had therapy for PTSD and had to work through the most terrifying scenarios like, “You’re at the grocery store and suddenly a woman comes around the corner carrying a baby, what do you do?” I remember being on a flight only a couple months after losing Lucy and there was a baby next to me on the airplane. I felt like I was going to have a panic attack. Every sound she made caused a physical pain in my chest. I could not believe how agonizing this adorable baby next to me was. My pain originated from my deep love for babies, especially my love for my baby girl who had been killed by my own body, and the love I had for my future babies who would never exist because of anti-kell antibodies. Every baby I saw reminded me of my dead dreams for my family and my dead daughter. And if I’m truly honest, they represented the lie that for some reason God loved those other parents more than He loved me because their babies were alive. The parents of the baby next to me on the airplane seemed to sense my discomfort. They probably thought I was just one of those adults who gets irritated with loud babies on planes. If only they knew the truth.

If only I knew the truth, that God was not using my tragedies as a custom made weapon to destroy me. God was going to take my little Lucy’s life and my tragedies and He was going to fashion them into a custom made ministry just for me. And guess who God has me ministering to now? Women and their BABIES. Beautiful babies who are possibly in danger like Lucy was. Babies in Pakistan, babies in Canada, babies in Australia and Egypt, babies in the UK and the US, babies in Germany and Israel, Cambodia, Switzerland, Russia, France and even babies right here in Alabama. I get to help babies every single day and it is some of the most rewarding work I have ever done. I get to encourage and empower women who have babies in the womb, women who have babies in heaven, women with babies waiting in their future, women with newborns and women with broken hearts. I love these women, and I desperately love their babies. God uses every single one of these parents who reaches out to me and He uses every single baby to restore a small piece of my broken heart and to restore my hope in Him.

Here I am four years later, and now I am able to look at a baby and see redemption, hope and the greatness of God. Oh the redemption that God has brought through these babies and their moms!

And so, without any more delay, here are some of the beautiful babies that have been helped through Lucy’s story and my blog. Thank you Jesus, for each one of these lives that has been touched by my Lucy’s.

COOPER cooper

CLAIREclaire

EVAeva

JESSA JADEjessa-jade

TYLERtyler

JACOBjacob

KRISTIAN (in heaven with Lucy) and MIKAHkristian-and-mikah

JULIA JOYjulia-joy

SAGE (in heaven with Lucy)sage

KETHRYNkethryn

ROSE with big brother and sister Logan and Havenrose-with-big-brother-and-sister-logan-and-haven

SHUA, ARI and MOSELLEshua-ari-and-moselle

LIAMliam

ELLIEellie

MILAmila

MATILDAmatilda

LUCY ANNElucy-anne

GABRIELLA GRACEgabriella-grace

OSCARoscar

WESLEY JAMESwesley-james

SKYLAR ROSEskylar-rose

AVAava

BRIANA ANNEbriana-anne

LANGSTONlangston

OWEN BLAKE (being born right now, on Lucy’s birthday!)owen-blake

HADRIANhadrian

BABY BOY ROBILLIARDrobilliard

ASAIAHasaiah

NYAHnyah

And of course, NORA JULIET who would not be here if it weren’t for Lucy

And this is baby Hudson, whose mom did not come across my blog until a few days after her son was stillborn this past December. This is why I push so hard to get Lucy’s story out into the world, because Hudson would be here today if only the doctors had provided the right monitoring and treatment. Lucy would probably be here today if she had been given the correct monitoring and treatment too. I will keep telling our story and fighting for the Hudsons and the Lucys who deserve to be here with us.

“I wish I had read your blog whilst pregnant because I would have had the knowledge I have now and possibly could have saved my baby Hudson who was born sleeping on 29th December 2016 due to Anti-K antibodies and having no close monitoring – I was totally unaware of what most of it all meant until I read your blog.”

HUDSONhudson

The love I feel for these babies is unreal. The very tragedy I thought would push babies out of my life has brought so many babies into my life that I have a deep affection for. They are my “yes” from God.

For anyone who feels like God has turned His back on you, for anyone who has suffered unimaginable loss and for those whose lives have not turned out the way they planned, just decide to trust God anyway. Because I am convinced that when there is great loss combined with great trust in God, miraculous things happen. Yes, even a one pound baby girl who never took a breath outside of the womb can leave a legacy that reaches throughout the world.

Happy fourth birthday in heaven, Lucy Dair. I am proud to be your mama. You were worth it all. Four years closer to having you forever. Despite all the pain and agony of waiting to have you, I absolutely love being your mama.

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Treasuring Up All These Things

Luke 2:19 But Mary treasured up all these things and pondered them in her heart.

This verse in Luke is one of my favorite verses in the Bible. Mary had just given birth to her first child and a little while later a group of shepherds came running in, telling her about angels that had just visited them in the fields. The angels were praising Jesus, the same Jesus Mary had just given birth to. What must have been going through her head at that moment?

As 2016 draws to a close I realize that this year has been a year of treasuring up and pondering; like Mary did in her heart when the shepherds came rushing in after Jesus was born. I can only imagine how overwhelmed Mary was after going through labor and delivery, then facing these visitors and their message from God. Sometimes the weight of a moment is too much to take in right then. Sometimes God reveals things to us that we can’t possibly fathom. Sometimes the beauty and wonder of the moment deserves more than the time it’s given. Life is so fleeting. I often wish I could pause time to fully take in the wonder before me, chubby arms and legs, toddler sized proportions in nothing but a diaper, the sweet five year old love ballads to Mommy, the gentle kiss from biggest brother to tiniest sister. Since I can’t stop time I treasure up the moment and soak it in, ponder it in my heart, store it up to take out later and admire. My year has been full of these moments that I want to keep forever. Moments that point back to God and His goodness.

The moment when Mary stopped to treasure up all the things that were happening around her, to ponder the message God was sending her about her child, often reminds me of a day when I did the same but in very different circumstances. February 8th, 2013, the worst day of my life, when my daughter’s heart stopped and my body became a tomb, God made His radical promise to me, “I WILL REDEEM THIS.” I had no energy or clarity of mind to even attempt to grasp what the words meant, so I stored it up for later. Like Mary, who probably could not believe what was happening to her or how the path of her life had suddenly gone a completely different direction than expected, I struggled to take it all in. I was in shock. But God spoke over and over again, an audible voice in my head, “I WILL REDEEM IT.” And each time He spoke I took His promise like a treasure and stored it away to ponder later. Since that day, almost four years ago, I have contemplated the promise many times, turning it over in my mind. God promised to redeem my daughter Lucy’s death and all the loss and pain that came with it. But did He realize how much was lost on that day and all the days since then? That promise of redemption feels too large. It feels impossible. The first year or two after Lucy’s death I reached in and took that promise out in anger, wielding it like a weapon towards God, “You promised me! But you let more tragedy strike instead! Why would you make a promise you could never fulfill?” How could He possibly repay me for my daughter’s death? Over the years God has patiently and carefully crafted my story, moment by moment, using all the loss for good, mending broken places and making the barren wasteland fruitful. And yes, even redeeming parts of my Lucy loss that I thought would never be redeemed on earth.

This year especially I have seen the redemption He promised emerge more than ever. There have been countless moments of glory, beauty and joy that I never thought I would experience again on earth, too many to list here. Many of these moments involved my miracle baby Nora and many of these moments involved other women with high risk pregnancies who were looking for support. I treasure all these things up and praise God for them (especially my baby Nora!)

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There have been other moments this past year that felt surreal, heavy and empty at the same time because Lucy wasn’t in them:

The play date where all the babies have their preschool siblings along too but three year old Lucy is missing. I’m supposed to choke down my chicken nuggets and smile like everything is normal. I’m the only one who sees the empty space where she should be.

Folding up and putting away her empty stocking on Christmas Eve after the other three have been filled with toys and chocolate.

Telling her brothers that I am sorry, I don’t know what she would look like today and watching their hot tears stream down.

Suddenly realizing in the middle of an English lesson that the little girl I’m teaching is the exact age that Lucy would be today. Her big brown eyes staring up at me, her little laugh. Would Lucy look like that? I don’t even know what her laugh sounds like. I weep for my baby girl the entire drive home.

Over the course of this year God has been teaching me to pause right then and ponder the painful moment, gather it up and give it to God to be redeemed later. I’m learning to trust that He WILL redeem even that terrible moment. Every tear shed, every time the weight of grief feels too heavy to bear, every single thing I miss with Lucy will be redeemed, repaid and restored. God can redeem the deepest loss, even your loss. He can bring beauty from ashes, He can even heal parts of your heart that you thought were broken forever. Some things can never be mended until we get to heaven, but these things that He does redeem on earth are our foreshadowing of the glory and restoration to come.

If you are reading this I have prayed for you. I’ve prayed for your 2017, that God would bring about the most beautiful redemption in your life. I’ve prayed for your healing and for your joy, that God would give you the desires of your heart and would grant you the request of your lips. Be bold and ask Him for the thing you so desperately want. Gather up all of your hurts and hand them over to Him to be redeemed. Those who sow with tears will reap with songs of joy.

Psalm 126  When the Lord restored the fortunes of Zion, we were like those who dreamed. Our mouths were filled with laughter, our tongues with songs of joy. Then it was said among the nations, “The Lord has done great things for them.” The Lord has done great things for us, and we are filled with joy. Restore our fortunes, Lord, like streams in the Negev. Those who sow with tears will reap with songs of joy. Those who go out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with them.

Lately

I have been so bad at regularly updating the blog these past few months! I have several posts written in my head that I really want to type out but I just cannot find the time to do it. Part of me feels guilty about this since I used to be so consistent with my blogging, but part of me also feels relieved that there have been no big tragedies in my life lately to blog about. I am busy with life, regular life with my three earth babies, and it is wonderful. I still feel like I’m trying to reintegrate back into “normal” life, except that it is a new normal. I still struggle with the fact that I will never be the person I was before anti-kell antibodies and before my daughter died. This adjustment to my new life feels very similar to when I move to a new country. It’s disorienting at first trying to understand a new culture, learn a new language, figure out a new transportation system, make new friends, find your way around a new city, etc. I’ve realized that it takes me at least a whole year in a new country to start feeling like I’m not just a visitor anymore, like I belong. I still feel like I don’t quite belong here even though she died three and a half years ago.

For the rest of my time here on earth my life will be divided into two parts…no, not even two parts, two completely different lives. There was my life before Lucy and there is my life after Lucy. It feels like I am just now figuring out how to make this new life work. I am feeling more confident finding my way around this new country. The culture shock is not as terrible now, but it still jolts me some days. Often, the cloud of sadness settles on me and overtakes everything. I can’t believe I’m missing her whole life. I can’t believe I have to actually go through the rest of my life not knowing my daughter, not interacting with her on a daily basis. Most of the time, though, I just feel thankful. I’m thankful for all that God has done for me. I’m thankful for the many ways He continually fulfills His promise to me that He made on the day Lucy died. He said He would redeem her death and my pain, and He is slowly doing that, day by day (this is one of the blog posts I need to write!)

I started working part time again teaching English to German families and I love it. It is so rewarding and fulfilling for me and the extra income is desperately needed. We finished paying off all of Nora’s medical bills, but we still have our credit card bill to pay off. Normally we don’t use our credit card at all unless there is an emergency but after we lost all of our savings on the “adoption” and I moved to Houston last year we had to use it on a regular basis. Hopefully we can now pay it off over the next year.

Lately I’ve been struggling with the fact that if I didn’t have anti-kell antibodies, we would have already been trying again for our next baby. We would have to get pregnant this month or next month if we wanted Nora to have a sibling two years younger than her. It hurts me to see Liam and Asher play and wrestle while Nora sits all alone on the sidelines, smiling sweetly at her brothers. She should have a three year old sister. I wish I could be pregnant right now with her little brother or sister. I don’t want her to be all alone without a sibling friend close in age. It is another loss that hurts me every day. We are not trying to conceive, by the way. Here is Nora playing with her stuffed animal friends on her little couch that she got for her birthday.

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Nora is now 14 months old and is still such a content, joyful baby. I love having a little girl in the house. She is so different from her brothers. She loves shoes, clothes and jewelry and tries to dress herself already. She is very maternal like I was when I was little. Her baby dolls and stuffed animals have all been rocked to sleep, bottle fed, kissed, patted, dressed, undressed, dressed again and even sung to. Nora loves talking and singing. Her favorite sentences are “I love you.” and “I like this.” I ask her, “Nora, who is your hero?” and she says, “Doc Mo” which is her version of Dr. Moise. Last night she was playing with her Daddy before bed and she pointed to her belly and said, “Tickle this.” She is finally walking all over the place and trying to keep up with her brothers. They are still obsessed with her. They think she’s hilarious and adorable and they can’t believe how soft her skin is. I often hear one of them say something like, “Mommy, Nora is so cute she’s making my eyes cry.” They are gentle around her and very protective of her. If one of them accidentally knocks her down or hurts her somehow, I always end up comforting the big brother more than I have to comfort Nora. She might cry for a minute but her brother will cry for half an hour and then feel guilty all day about how he knocked her over and hurt her. In these moments I feel extra thankful that she didn’t die in my womb. Her brothers would have been absolutely devastated. I’m so glad they didn’t have to go through that heartache again. Liam asks often about Scarlet and Lucy and he says on a regular basis, “What if we had been able to keep Lucy, Scarlet AND Nora? I would have loved that.” He just said it again this morning. Our lives are interwoven with grief and joy and “what might have beens” but they are anchored in the steadiness of God’s love and goodness. Our joy and our stability are found in Him and we are so thankful that He is unchanging. Here are a few pictures of Nora lately and a video from her first birthday that I forgot to post earlier.

 

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Nora and five year old Asher

When big brother “helps” Nora get a sip and almost drowns her instead. Ha!

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That time Nora loved the little chick so much she almost squeezed it to death.

Mommy and Nora

Nora feeds a baby goat at the barnyard.

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Feeding ducks with Liam.

That tiny ponytail!

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This morning she tried out the sandbox for the very first time and scooped shovels of sand onto her head.

 

Where Is Your Sting?

This is a heavy post. My grandfather is dying right now. He is 93 years old and he’s in a hospital bed in my old bedroom in my parents’ house down the street. We have been keeping vigil by his bedside for the past four or five days, never leaving him alone for more than a few minutes at a time. Days ago we thought that he surely wouldn’t last another day, another hour, but the body that has worked well for almost a century is not willing to give up so easily. It is heartbreaking to watch, emotionally draining and depressing. We know that he is going to heaven and that he has wanted to go to heaven ever since my grandmother died five years ago, but it is still painful to watch the transition. I keep thinking about Lucy and my three babies on earth. Liam, Asher and Nora will all die one day and I probably won’t be here to make sure their transition to heaven will be as comfortable as possible. This is a distressing thought. Will my babies be well loved in their last hours? Will they be scared? Will they be in pain? My Daddy-D, he is somebody’s baby boy, and that’s how we are treating him…the way we want our children to be treated when they die.

Nora and Daddy-D have had a special bond, especially these last few days. She loves sitting on his bed next to him, patting him and babbling at him, even saying his name. His face would light up when he saw her in the last few days that he was aware and still in control of his body.

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Daddy-D being silly with Nora


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Playing peekaboo with Daddy-D


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Nora gives love pats while my sister moistens and cleans Daddy-D’s mouth.

She played peekaboo with him, touched his nose, laid her head on him, and all I could think of was Lucy doing the same things with him soon, in heaven. How long until he goes from playing with my daughter Nora, to playing with my other daughter Lucy? Days? Hours? Minutes? And he will get to know her before I do, my own daughter. How do I process this?

As he has slowly deteriorated and faded, we have been speaking more about the people who are waiting for him in heaven. My mom encourages him, “Mama is waiting for you, Daddy! She can’t wait to see you!” He seems at peace most of the time. I have to mention Lucy…”And you will get to see Lucy soon, Daddy-D! Tell her…” What do I say? What kind of words can I send with him that can adequately convey my love to her, my ache for her, my inability to live without her here? There are no words in the English language powerful enough to express how I feel about her. “Tell her that Mommy loves her and misses her so much. Tell her about her sister and her brothers. Tell her how fun it was playing with her baby sister. I’m jealous that you get to go meet her.” The words are limp. Not enough. He can’t really move but his eyes fill with tears and the tears spill out the sides, running down his face. He tries to speak but we can’t understand what he wants to say.


As I watch my Daddy-D get closer and closer to his last breath I think of the verse-

1 Corinthians 15:55  Where, O death, is your victory? Where, O death, is your sting?

I know that Jesus conquered death, but these words don’t feel true because death seems so much bigger at the moment. Looming, mysterious, inescapable. None of us are getting out alive. I feel weighted down as he struggles to breathe. THIS is the best case scenario? One day, we will all be dead.

I ask God for His perspective, for His light to brighten our darkness. And He gives me thoughts that comfort: Death is inescapable, but for those who love God and believe in Him, it is only a tiny slice of time; a moment. It doesn’t define us, it isn’t the end, it is just a transition we all have to go through. For those of us who are left behind, death is a separation from the people we love, and that is why I hate it. For those who are dying or have already gone ahead, death is a link to the people we love, and that is why I appreciate it. Yes, death is real and it affects us all, but there is also SO MUCH LIFE. Daddy-D experienced so much life. He lived for 93 years! When my mom was a tiny girl he promised her that he would tell her he loved her every single day, and he did. He kissed her and doted on her and told her she was beautiful and she believed him. He loved his wife and his kids and his grandchildren well. He loved God and was faithful to Him. Daddy-D was a leader, a WWII veteran, a successful engineer and he LOVED giving advice. When we were younger he would say, “Look at my old, wrinkly face. Would you swap faces with me? No? What if I gave you ten dollars, would you trade faces with me then? No? What if I gave you a million dollars, would you trade faces with me then? No? Then you are a millionaire right now, at this very moment.” And I felt like a millionaire. He often reminded us, “Deciding to follow God is the most important decision of your life. Deciding who to marry is the second most important decision you will ever make.” I could write so much about his life, but the point is that he LIVED. And after his last breath, when his life here on earth comes to an end, there is more life. Everlasting life stretches out ahead of him. Thank you, Jesus for this gift. What if we could see death for what it really was? Just a thing we all have to get through, like puberty, or winter (or summer if you live here in Alabama.) It does not loom, it does not define us. THERE IS SO MUCH LIVING TO BE DONE, before death and after. Having this assurance brings the most amazing peace, even here in the valley of the shadow of death.

If Daddy-D could tell you one thing right now as his time on earth dwindles, I know he would ask, “Have you made the most important decision of your life?” Because that decision is what defines your eternity, and when you accept the free gift of life that Jesus offers, you rob death of it’s power.

Romans 10:9  If you confess with your mouth that Jesus is Lord, and believe in your heart that God raised Him from the dead, you will be saved.

I love you Daddy-D. Give Lucy so many kisses for me.

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Ripples

“Mommy, do you want to die in an explosion so you can go to heaven and see Lucy?” Five year old Asher caught me completely off guard with his question. I wasn’t sure if I wanted to laugh or cry but his face was earnest and he really wanted to know. I told him I didn’t want to die in an explosion but I was excited about being with Lucy one day when I do eventually get to heaven.

Lucy’s death had such an immediate, violent impact on my life but the rippling effects are really hitting the boys now. Liam and Asher are suddenly old enough to comprehend that their little sister is dead and it is heartbreaking to watch them work it out in their minds. The boys are so obsessed with Nora and they love having their baby sister with them. I think they are just now understanding all of the beauty and wonder and love that they are missing without Lucy here. I found this drawing at the bottom of Liam’s backpack the other day.

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I asked him about it and he said it was a bad guy freezing the whole world and all the people died but Lucy (who is the tiny dot in the upper left hand corner) survived. Lucy survived. Our ultimate fantasy scenario. Liam also told me yesterday, “Mommy, I’m sad about a daydream I had where all the babies are trying to be alive, like all the babies in their mom’s bellies, and the ones who don’t win die but only the winner gets to be alive.” The boys have asked us about having another baby and we told them that if I had another baby in my belly we don’t know if that baby would live like Nora or die and go to heaven like Lucy. Asher asked me today how old Lucy is and I told him she is about 2, almost 3 years old. I hesitated, though, because I honestly don’t know how aging works in heaven. Would Lucy grow up, year by year like she would here? Or is she still a newborn waiting for me to get there so I can watch her grow up? Or is she an adult? If she were here on earth she would be turning 3 years old this summer. She would be exactly two years older than Nora, just like Liam is two years older than Asher. The boys always have a combination birthday party in February/March and I know Lucy and Nora would have had a combination birthday party every July. I hate that Nora doesn’t have her big sister here with her. Such a huge loss. The boys are so sad that Lucy isn’t here with them. Asher asked what she looks like now and I had to tell him I wasn’t sure. He looked so sad and asked if she looked just like Nora but had a different name and I told him I didn’t know. He said he wanted to be in an explosion so that he could go see what Lucy looks like. I know some of these thoughts seem morbid, but they are just a peek into five year old and seven year old minds trying to understand death. I hate that death is such a big part of our family and part of the boys’ childhoods.

Asher always includes Lucy in our family. He was very wounded this past Christmas when I didn’t hang a stocking up for Lucy. I promised him that next year we will hang a stocking up for both of his sisters. This is his latest family drawing:

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He is holding Nora and up in the sky is Lucy in her mansion in heaven. She is looking out of the window at us. He insisted that I hang the picture up on the wall above Nora’s crib because he drew it for her. Oh how my heart hurts when I think about telling Nora one day that she has a sister that she will never get to meet until she gets to heaven. Watching the boys deal with Lucy’s death now, three years later, is a reminder that this terrible tragedy that happened to us in 2013 isn’t just over, even though we are continuing to heal. The harsh reality is that the tragedy continues and the ripples continue to bruise us, to cut into our hearts, to reopen old wounds. There are facets of our loss, our life without Lucy, that have yet to impact us. One day when Nora gets older she will wish she had someone to play My Little Ponies with; a sister to tell secrets to and do each others hair and share clothes with.

It is hard to go through life without such a vital part of our family. It is hard for siblings to comprehend their sister being dead. Their sister will never be a part of our family here in the flesh. But goodness, she makes heaven so much sweeter and more tangible. When Asher builds things with Legos he often constructs a scenario here on earth and then one in heaven too. “Mommy, these guys are in their house having a meeting and this guy is in heaven.” Thanks to Lucy, heaven is a very real place to us. She has gifted us with an eternal perspective on life and a joyful anticipation of heaven. I used to dread the end of my life on earth. I feared death. It made me feel anxious and panicky. Now, I look forward to it; not in a suicidal way, but in a very sweet, excited way. I feel peace about dying and I can’t wait to get to heaven. The boys are excited about heaven too and they look forward to meeting their little sister and seeing the mansion that she lives in.

The rippling effect of our loss and heartache will continue to hit us throughout our lives. I know one day when all the 2013 babies start kindergarten I will have an intense ache in my heart…and when they graduate and when I know she should be in college and when I see a beautiful bride her age walk down the aisle and when I meet my grandchildren but none of them are Lucy’s…I will continue to be wounded again and again and so will her Daddy. As her brothers grow and understand more and more about this great gaping hole in our family, they will continue to be bruised as well. BUT these destructive ripples are confined to this earth. They will not follow us to heaven. They are harmless in light of eternity, and that is why I look forward to heaven so much. I just can’t wait to see my first girl and to see all of my children under one roof.

What You Can Get Lucy For Her Birthday

Lucy’s third heaven birthday is coming up at the beginning of February. I wonder what kind of presents we would be buying her if she had been born alive? I wish we were preparing to celebrate her third birthday like we are getting ready to celebrate Liam’s seventh birthday and Asher’s fifth birthday…with presents, cakes, parties, friends and family. What I really want is for her to just be here with me and for all the time I’ve missed with her to be made up. Obviously, these things can’t happen but there is something that YOU can get her for her birthday. I would love to see how her story has impacted you. It brings me so much joy and comfort when I realize that GOOD has come out of her death. I have a big favor to ask: If you have been impacted by Lucy’s story would you be willing to share that with me? If your baby has been helped by our experience with anti-kell antibodies, if you have been comforted in a time of mourning, if your faith has been strengthened, if you have been encouraged in your journey to build your family or if you have been impacted in some other way, could you email me at bethanysk55@yahoo.com and tell me about it? Or you can just leave your message in the comment section here. It doesn’t have to be long or well written, just a sentence or two telling how you have been encouraged. That would mean so much to me. I would love to honor Lucy by sharing your story here on her birthday. If you DON’T want your experience shared on my blog just specify it in your message. Let’s all come together and show the world that even the smallest babies and the shortest lives can have a BIG impact on the world. Thank you all ❤