Losing Lucy

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Everyone's weight loss journey is unique to them. She has given me kind, consistent and reliable support. She never doubted me. She understands the struggles most of us have to lose weight and has given excellent advice throughout. With Lucy's help I have succeeded way beyond my expectations. I was under the impression that at my age 61 I would never get back to the size I was in my twenties. I would highly recommend Lucy and CWP to anyone whether they have a lot or a little to lose, and in my opinion there is no one better able to help you with your weight loss than Lucy.

Lucy is a fantastic consultant and works so hard to understand her client's individual needs and their personal reasons for wanting to lose weight. I felt like a friend was always there to talk to, whether I was having a bad day or to share the joy of getting back into "those jeans". If you are thinking of making a change or even doubting if you can do it, I highly recommend you chat to Lucy.

With her supporting you, you can't go wrong. We share what we have learned from our own pregnancies and we help others protect their babies. I was not a part of the group when I was pregnant with Lucy so I had to figure out that pregnancy on my own. What a difference these women made in my life by sharing what they gained from their trauma.

She has used her suffering to encourage and support other families going through similar losses. The wisdom and empathy that Melanie shares with thousands of people daily is only available to her because of Dominic, and because Melanie has chosen to rub love and hope into her grief. How has your perspective changed?

These are your gifts to share with the world, to bring purpose to your suffering and to help others who are facing a similar tragedy. And I can tell you from personal experience that when you reach out and use these gifts to help others, it will end up benefiting you more than you can imagine. Their parents are some of the bravest people I know.

I cannot describe how much joy and fulfillment these babies bring to my life and I feel honored to be a part of their stories.

Hi, I'm Lucy!

Happy birthday, Lucy. I hope you can see what a difference your life has made in the world. I am so proud to be your Mommy. Francesca and Vincenza aka Frankie and Vinnie.

Losing Lucy

Paxon, Madon and baby sibling on the way. Rainbow baby girl Stevens on the way. Rainbow baby girl Stacey. Ezra baby sibling on the way. And beautiful Liliana, who, like Lucy, would probably be alive today if she had received the right care. Our little rainbow baby, Nora, is now almost three and a half years old. She is so different from her brothers; another species entirely.

At her age they were reading independently and constantly trying to run over the edges of tall things.

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The boys would spend hours every day constructing train tracks and creating deadly train crashes along the way. She spends most of her day thinking about princesses, making up dances and songs, and caring for her baby dolls. Parenting a three year old is both fun and exhausting because your child can now verbalize her thoughts about the world which means there is an endless stream of words and questions flowing out of her mouth. We laugh every day at something hilarious and ridiculous that Nora has said and we die from the cuteness too. For Liam and Asher it comes naturally to include Lucy in most things, which still amazes me and feels like balm to my heart.

When counting how many girls vs. For projects at school they include Lucy in their family description most of the time. But this Christmas Nora asked a lot of new questions that were painful and difficult to answer. Will she be here in our house on Christmas? I want her to have her stocking. Can we give it to her? Recently, Nora noticed a little drawing taped on the wall in her room. It has been there ever since she was a newborn. Soon after we brought her home from Houston, Asher drew a special family picture for Nora and insisted we tape it on her wall for her to look at.

Up in the sky, is Lucy, looking out of the window of her mansion in heaven, smiling. Lucy is included as a natural part of our family but the separation is clearly illustrated. All of us down here together. Lucy up there in heaven. So Nora asked about the picture on the wall and I pointed everyone out and explained it to her and she loved it. But of course, she had lots of hard questions. Nora notices more and more how the big brothers play together so effortlessly without her in the scenario.

I mean, it only makes sense that she would not want to be part of their conversations about Fortnite or the imaginary Civil War battle they are meticulously planning out, casualties and all. In those moments I ache so deeply for Nora to have her five year old sister here with her. I can see the hours of fun they would have playing together every day, an easy friendship built into the family. My whole childhood was a never ending play date with my sister Kristin, who is 22 months younger than me.

And Kristin and I wanted everyone to know that we had chosen to be friends. Nora would LOVE to have a five year old sister friend, even for just one day. How many days of joy and friendship are missed? Years of friendship gone. A lifetime with her sister gone. Thank God for the power He gives me to forgive and to love the people who are hardest to love. Without Him I would be drowning in my bitterness. To our house? Or maybe the next day? This is the worst. And she can stay at our house.

But we can see her when we go to heaven. Where do we go through? Nora instantly looks horrified. And it is going to be so wonderful. Finally she lets me change the subject but I am shaken, and the rest of the day I feel desperately sad.

People die and kids grow up and everything changes but God remains the same. He never changes. He is constant and trustworthy and His love for us never changes.

Losing Lucy

He is our anchor. He even conquered death so really, for those who know God, death is only moving from this place to our real home. Will she come here tomorrow? And the most beautiful, comforting thing is that God does not leave us here to flounder in grief while we wait. He is here with us, filling in the gaps where we ache, where dreams are unfulfilled and people are missing. God can be our fulfillment, our strength, our peace, our joy.

So maybe Nora has to wait until heaven to have a sister, but she can have other meaningful relationships here and she can have peace, joy and fulfillment through the God who never leaves or changes. Zephaniah The Lord your God is in your midst, a mighty one who will save; He will rejoice over you with gladness; He will quiet you by His love; He will exult over you with loud singing. Romans For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

Deuteronomy The eternal God is your refuge, and underneath are the everlasting arms. It is hard to believe that my daughter would be turning five this year if she had been born alive. How did I survive five whole years with this ache inside my chest? I wonder who she would be today. Would she be reading super early like her brothers or would she show no interest in letters like her sister? Would she be doing gymnastics like I was at five?

Would she have curly hair like Nora? Would Lucy be stubborn and independent like I was as a kid? Or would she be a rule follower like her Daddy? Would she be a tomboy or would she prefer Barbies? I wonder what her voice sounds like. I wonder who her little friends would be. Oh I miss my baby so much. The other day I got my Lucy box down and let Nora look through it. There is still so much heartache to come.

I can tell from the buoyancy of my writing that I was a different person then. Cheerful and optimistic. Sure that God would save her if I had enough faith. Then at the end of my 17th week of pregnancy or possibly 18th week since they changed her due date a couple times I wrote:. My baby might die tomorrow. She has to have an intrauterine blood transfusion at 17 weeks 6 days. I sobbed in the shower tonight crying out to God for her life. I want to keep her! You have her for eternity. Trust me. God gave His Son for us. I remember how desperately I cried out to God that night, begging Him to let me keep Lucy.

I think I knew then that God was not going to save her. Even though she survived the IUT the following day, she died eight days later while we watched on ultrasound. But that night when I begged for her life I sensed God asking me to place her in his arms. I look at those truths I wrote down five years ago and they give me courage to continue trusting God with this great loss.

They give me courage to face the future without her. All of the days to come, without my sweet girl. I can do this, no matter how much I hate it. If I could be brave enough then to give my girl back to God, I can be brave today too. Because the truth is, it still takes an incredible amount of might to live each day without my child. It takes courage and grit and forgiveness and a whole lot of energy.

Then, have hope!

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Hope forever, for God will not fail you. Hope forever. As the days and the weeks and the years pass, more and more light slowly emerges. The dawn after our night. Today I can feel joy and contentment and I can sing again and I laugh freely most of the time. I go days and sometimes weeks without crying. But God has been true to His word. He has been persistent in His quest to redeem the many things that died on February 8th, along with Lucy.

And one day when I arrive in heaven, He will redeem the loss of my daughter and all of the missed moments with her here on earth. Yes, I will hope forever, for God will not fail me. Three days after Lucy died when I was at one of the lowest points of my life I wrote this simple journal entry:. I trust you, Lord.

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Show me your goodness. Show me your hope. Show me what you are going to do with this sacrifice of pain and loss. This is the update 3 years in the making! This is what I understand about M and the phase 2 trial currently underway. Imagine a busy train track with trains coming and going every hour or so. Now imagine a toddler walking around exploring the train tracks, picking up rocks, stumbling and righting himself, following a passing airplane overhead with wide eyes. You hear a train approaching in the distance. What is your first reaction? Go get that baby off the tracks, right?

It seems logical to protect the toddler from being hurt or killed before the injury happens. Let him do his thing and if he gets hit by the train we have medical professionals who can treat his wounds. There is a possibility of death but hopefully we can save him after he gets hit by the train. Why not remove the baby from the area or at least put up a fence or other barrier to keep the baby away from the train track?

Instead of protecting the baby from the antibodies to begin with, the protocol is to wait until the baby is attacked by the antibodies and becomes anemic before stepping in to help. But this way of treating the disease has proven dangerous far too many times. Sometimes the fetal anemia is discovered but the doctors wait too long to do a transfusion and the baby dies.

There can be complications from the IUT which can lead to premature delivery or death. Another complication is hyperbilirubinemia after birth which can lead to permanent brain damage if not treated quickly and aggressively. What if there was a way to protect the baby from the injury in the first place instead of trying to treat the wounds afterwards? Well, Dr. Moise and some other brilliant people might have figured it out! This drug is still in the trial phase but it looks very promising and I am so excited to see how it might save lives in the future.

Since my original blog post in , researchers have done drug studies on pregnant primates and non-pregnant humans to test for safety and efficacy of M They have studied the drug in human placentas in the lab too. To learn more about these studies you can check out these links:.

Right now the phase 2 trial for pregnant women is open and they are accepting 15 trial participants worldwide. I wanted to answer some of the most common questions I have received about M here so that the information is easy to find. If you have other questions about the new treatment or about the drug trial you can come join our M Discussion Group on Facebook or you can email me at bethanysk55 yahoo.

If you have specific questions about the trial here is the contact information for Momenta Pharmaceuticals:. Please refer to this study by its ClinicalTrials. The drug trial is only for women with anti-D or anti-Kell antibodies since those two are usually the most aggressive ones when it comes to HDFN and the study wants to specifically target the worst case scenarios before declaring that it works. But the drug does block all red cell antibodies from going through the placenta so if it does get approved and go on the market it will work for anyone with a red cell antibody.

This is part of what they are trying to determine with the phase 2 trial on pregnant women but the previous studies did not find any evidence of birth defects or major negative side effects. The drug will be administered once the woman is in her second trimester so that alone is safer in regards to birth defects since those typically happen in the first trimester. Also, previous studies show little to no transfer of the drug to the fetus.

Even with those life saving treatments Nora had seven transfusions total and Callum had six transfusions total as well as other interventions and medications, NICU, etc. The antibodies still wreaked havoc on my babies both in the womb and in the weeks following birth. IVIG is also very expensive and most countries will not approve it as a treatment for our disorder.

Another down side of IVIG is that it usually comes with some pretty severe side effects for the mother. I had debilitating migraines, vomiting, rapid heart rate, difficulty breathing, back pain, muscle weakness, eczema and more. I also had to take more medications mostly class C drugs for pregnancy to manage the side effects. For the people who were given M in the previous human studies non-pregnant there were no significant side effects. The next step is to complete the phase 2 trial which means following 15 women through their pregnancies and for six months after birth.

Only once the drug is deemed effective and safe will they consider making it available to the public. Right now the estimated trial completion date is If the drug blocks all maternal antibodies from going through the placenta, how does the baby get the good antibodies from the mother? Is the baby born without an immune system? If baby is showing signs of anemia they will deliver. The doctors have very specific requirements for trial participants, all for good reasons. Ken Moise at kenneth. For the first time in my life, I have a 19 month old toddler and I am not pregnant.

With all four of my other children by the time they were one and a half I was already pregnant with their younger sibling. As Callum grows it feels bizarre not to be growing as well with his younger sibling inside. There is a little bit of sadness but mostly a delicious freedom and ease to life, yes even with four kids. To be able to chase Callum or deal with a toddler melt down without fighting back nausea is such a relief.

It makes this stage so much easier as a parent. I am enjoying my four kids so much and savoring the absence of emergency in our lives. I love having my body all to myself and being able to sleep through most nights without tending to a baby. Our baby Callum is doing well and growing so fast. Liam walked at 11 months, Asher walked at months, Nora walked at 14 months and Callum was 16 months. I am loving this stage of life with the chaos and the sweetness and the hilarity of young children. The last time we were in Houston was when Nora was a newborn.

She was only about 4 days old when Josh and I woke up in the early morning hours in , packed up our room at the Ronald McDonald House and drove out of the city towards Alabama. As we left, the sun was coming up and I looked in my rear view mirror at the city doused in morning light and I cried happy tears of disbelief. We had done it. God had done it.

Nora was alive and I felt such a surge of love for the city of Houston, for all the miraculous things that had taken place there. So now to be back in Houston with bubbly Nora who never stopped talking the entire trip was very surreal and special. Now here she was playing with her brothers in the same spot, completely healthy and very much alive. I will never get over the miracle of her life and I will never stop telling of the wondrous things God did for us. He is such a faithful loving God, patient and kind and trustworthy. I truly have no good apart from Him.

At the Fetal Center Reunion we got to see Dr. Moise and many of the other doctors and nurses who treated us during my pregnancy. I saw some of the women who coordinated my care during my pregnancy with Nora and some of the nurses and ultrasound technicians who monitored Nora every week in the womb and assisted during her intrauterine blood transfusions.

My gratitude overflowed. It really did feel like a family reunion. They were all so sweet and happy to see Nora. Moise even though he had already met her when she was a baby obviously and Callum loved Dr. Moise too even though he had no idea who he was. I loved seeing Callum with his namesake and Nora with her hero. She reached out to me several years ago when she was pregnant with her son, Kristian, in her first known ISO pregnancy anti-D. I grieved and still grieve with her over the loss of her baby Kristian after his first IUT and encouraged her to try again for her rainbow baby.

Long story short, she traveled to Houston for her treatment with her second son and Dr. I think that week shaved about ten years off my life I was so anxious. Brittany has always been such an inspiration to me and she encouraged me throughout my pregnancy with Callum too. Now our miracle boys share a middle name, Joseph, after our hero Dr. After all of our history together, Brittany and I had never met in person outside of our cellphones. It was amazing to see her and her family face to face finally!

Of course we both had to spend most of our time chasing after our toddlers but we got a little conversation in here and there. Here are a few pictures of our families together with Dr.

Lucy (Part 3) – Seeya Bub

Moise and at the Fetal Center Reunion:. Anti-Kell antibodies, along with the other red cell antibodies during pregnancy, can be very confusing and scary, especially when you are newly diagnosed and trying to figure out what is going on. Some of the most common misconceptions revolve around the antigen blood results, titers and MCA scans. I have been trying for years to come up with an analogy to easily illustrate how these things work together and I have finally found a pretty good one.

In this post I will be using anti-Kell antibodies as the illustration but the analogy can also be applied to the other red cell antibodies such as E, D, c, Jka, Jkb, Fya, Fyb, etc. So, here is my shark analogy:. They have the potential to be very dangerous, they are designed to attack and destroy. Many of us have been in the ocean with sharks and not been attacked by sharks. For most people, the thought of sharks is terrifying and the thought of these antibodies possibly harming our babies is terrifying as well.

The antigen is hereditary and is passed down from a parent. If the baby has the antigen, passed down from his father, then that puts the baby in the ocean with the sharks. Still not necessarily getting attacked by the sharks but in the water and possibly in danger. If the baby did not get the antigen from the father, then the baby is on the beach, far back from the shoreline, playing peacefully in the sand or maybe taking a nap.

The sharks are still in the water with all their muscle and sharp teeth, but the baby is way up on the land, completely out of harms way. This is simply not true. There is no way a shark can attack a baby who is way back away from the water, on the sand. And there is no possible way for the antibodies to hurt your baby if the baby is Kell antigen negative.