Life Lately

It has been a while since I’ve updated the blog! Usually I am faced with the choice to either neglect the blog post I want to write, or neglect my kids and of course, my kids will always win in that situation. But I do desperately want to keep blogging. I still have so much to say. Part of me is super frustrated that I don’t have time to write lately but another part of me loves the fact that I’m so busy taking care of my babies that I don’t have time for anything else. I’ve also been working more (teaching English to German kids) so that leaves me with even less free time to write, but I am loving my job so much! Hopefully as Callum gets older and more independent and when Nora starts preschool in the fall I can have more time to write.

I feel like the last couple of posts have been kind of heavy so I would like to just do a normal life update. Callum is six months, almost seven months old already! He is such a sweet baby and is always super happy if he isn’t having reflux/tummy problems. His reflux and food intolerances have dominated our lives for the past several months. After a lot of trial and error and sleepless nights we now know that he reacts to dairy, soy, gluten, beef, tomatoes, peppers, oats and mint. I have cut all of those things out of my diet (Callum is breastfed) and he is now so much happier. He has an appointment with a pediatric allergist this coming week to do some tests and figure out exactly what he can and can’t eat, now that we are introducing solids. We also finally found the right medication for his acid reflux (Nexium) and it is helping a lot. Before we made those changes Callum would scream in pain and have very painful reflux. He spit up constantly and could never lie flat on his back because the acid would immediately come up his throat and hurt him. Diaper changes were painful because we had to lay him flat on the changing table and he would always end up screaming and choking through the diaper change. He also slept in a Rock and Play for the first six months because it kept his head elevated. Now we are finally able to lay him down in his bed, flat on his back. It is making our lives so much easier! Besides all of that, Callum is very healthy and meeting all of his milestones. He can roll over and is trying to sit on his own but still can’t balance well enough. He laughs and babbles and coos and LOVES eye contact. His eyes follow me around the room and he waits patiently for me to look his way, desperate for eye contact and a smile. His entire face lights up when I look at him or talk to him. I am his world. Almost every time he does that I think of Lucy in heaven. I wonder if she searches for me the way Callum does. I feel certain that when I arrive in heaven her eyes will find me and her face will light up like Callum’s does.

Nora is obsessed with Callum. She is only two but she can change his diaper and get him dressed. She feeds him and wipes his mouth and plays with him. Every morning as soon as she wakes up the first thing she asks me is, “Where’s Callum?” I prayed since she was born that God would give her a sibling friend and He answers those prayers daily in the sweetest way. I do have to be careful though, because Nora is still a two year old and it’s easy for me to forget that sometimes. I can’t really leave her alone with Callum for more than a minute or two. The other day she “gave him a bath” in A&D diaper ointment and then FED him the diaper ointment with a spoon while I was cooking dinner right around the corner. Here he is with shiny ointment hair (the picture doesn’t really do it justice):

img_0920

He can’t have dairy, wheat, soy, etc. but apparently he can handle A&D diaper ointment just fine!

Callum’s brothers also love him and think he is the best baby in the world. They adore him and thank God for him and kiss him constantly. It’s so wonderful to be in this time of healing and recuperation as a family. We were so worn down by all of the loss and the fear of trying again and the desperate need for another baby. The high risk pregnancies were also very stressful for our family. Now we can finally relax. Our house is overflowing with kids and toys and laughter. God is rebuilding our hearts slowly but surely and exchanging beauty for ashes. When I started this blog and named it Losing Lucy and Finding Hope we were in such a dark place that I wondered if I ever would actually find hope. And here we are five years later living in that hope that God promises. I am often overwhelmed with gratitude. Just holding my warm little baby feels like a miracle. I still can’t believe that I get to watch Nora grow up and I get to know all the little details of who she is. I whisper “thank you” to God countless times a day as I go about my tasks. I often have to stop myself from emailing or texting Dr. Moise and Dr. Trevett to thank them AGAIN for what they did for us. Ok, Callum just woke up from his nap so that’s all I get to write for today. Here are a few pictures from the past couple of weeks:

img_0970

img_0767

img_0833

img_0552

img_0840

img_0611

Advertisements

FIVE

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

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

img_9017

img_9013

img_9012

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

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

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

*I have her for eternity.

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

*She is HIS anyway.

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

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

*He will sustain me.

*I will be strong and courageous.

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

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

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

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

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

I TRUST HIM.

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

I TRUST YOU.

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

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

img_8939

“After a shocking loss of our daughter in 2016 I was told I should never get pregnant again because my antibodies would cause another loss. Long story short, I found Bethany’s blog and the ISO group which gave me hope again for future children. My rainbow baby Cameron was born this past summer and words can not describe how grateful I am for Bethany sharing Lucy’s story. If it wasn’t for her my son would not be here today. ❤️”
 img_8946

Isaiah

Gabriella Grace

Sloan

Alexander

Cole

Emmett

Maxwell Raymond “Bay”

Halle Ann 

Nate

Timothy James

Baby M

Olivia

Crosby

Sawyer

Freddy and Max (and baby on the way)

Grace

Sylvie

Baby G

Ava Irene

Benjamin

Baby P

Baby H

Bennett

Oliver

Baby T

Sadie-Mae

Boone

Max

Laylaimg_9073

Callum Joseph Thomasimg_9053

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

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

 

All the Yeses

One year ago today Josh and I drove to Atlanta to meet with Dr. Trevett for the first time. We had decided that if Dr. Trevett seemed knowledgeable about Kell and was on board with our treatment plan, then we would try again for our last baby.

We arrived at Georgia Perinatal Consultants one year ago feeling very nervous with a long list of very detailed questions for Dr. Trevett. I honestly thought he would encourage us not to have another baby, like most MFMs did after Lucy and again after Nora. Instead, Dr. Trevett was totally on board with our idea to try for another baby and he graciously answered all of our questions, then asked if we had any more. He was willing to try the new maternal blood test he had never heard of, he was willing to collaborate with Dr. Moise in Houston and he was on board with the treatment plan that we brought to him (which would have been his treatment plan anyway.) We left his office feeling courageous and confident in our decision to try for another baby and complete our family. I am so glad he said yes.

When I look at the newest little love of my life I am amazed to think of all the many people who said yes. Without those yeses he would not be alive today. My very first yes came from God when I had that longing for another baby, for a sibling friend for Nora. God said yes, so I talked to Josh about it. Josh said yes, so we prayed about it together. God patiently said yes again and again with each fearful prayer. Next we asked Liam and Asher if they would be on board with another high risk pregnancy for Mommy. We laid out all of the suffering that might happen, the possibility of losing another baby, the time they would have to spend away from Mommy (but the possibility of another living baby too) and they jumped up and down and said, “Yes!” because they wanted another baby brother or sister so badly. Next, we asked our team of family members and friends who would have to help us get through the pregnancy and they all said yes. Dr. Moise and Dr. Trevett were next and they both said yes.

There were countless other yeses along the way. The many people who prayed for us along the way, the sweet friends (some we had never met face to face!) who let us stay in their homes when I had treatments and appointments in Atlanta. The people who said yes when we needed help with childcare or rides home from school, and the people who said yes to meals, groceries and medical advice. Today I am reminded of all the yeses that led to my sweet baby boy being here in my arms and my heart overflows with gratitude. Thank you to all of you who said yes and went out of your way to help our dream become reality.

img_8698

Callum’s Birth Story

Isaiah 41:17-20 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. 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. 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, 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.

A tree is just a tree unless it grows in a wasteland, then it becomes something quite miraculous; a sign of something greater, someone greater. I believe that every life is a miracle, but sometimes it takes an impossible situation to see the Hand behind it. My wasteland of a womb was supposed to be uninhabitable for human life, but Callum grew and flourished there in the desert. Let us all see and know, let us consider and understand together that the hand of the Lord has done this, the Holy One of Israel has created him.

Well, Callum’s birth story is not what I was expecting at all, but it’s not my birth story is it? It’s his birth story and he definitely made it his own. I was scheduled to have Callum’s fourth and last intrauterine blood transfusion on Wednesday, September 13th. This meant that I had to be at the hospital early on Monday the 11th to have my blood drawn. They always drew my blood a couple days before the IUT to make sure the donor blood matched my antibodies. I left at around 2 am that Monday morning for Atlanta and prayed that I would beat hurricane Irma there. Well, it was a tropical storm by that point but I still did not want to be caught in the storm on the interstate. I barely gave any thought to what I packed, expecting to only be there for three nights at the most. Oh, how I wish I had packed for a birth and for weeks of post partum life, breastfeeding and a long stay in the Ronald McDonald House! At least I grabbed Cal’s diaper bag at the last minute. I got to the hospital that morning and everything felt a bit weird and tense. All the schools were closed because of the storm and Dr. Trevett’s office was closing at 12:00. I was scared that the blood bank would have trouble getting the blood in time if the storm was really bad. I also worried that something would happen and Dr. Trevett wouldn’t be able to make it to the hospital Wednesday morning for the IUT.

Dr. Trevett did an ultrasound to check on Callum and he seemed really subdued compared to his normal active self. His MoM was 1.85 but Dr. Trevett didn’t see any signs of hydrops or distress. MCA scans aren’t usually accurate anyway after the second IUT because the baby’s blood is actually adult donor blood, which flows differently. Dr. Trevett thought Callum would be fine until the transfusion on Wednesday.

I drove to our friends’ house and you guys, there were no cars on the interstate, in Atlanta, in the middle of a weekday. I felt like I was on the Walking Dead. Super eerie. A couple hours after I arrived at their house the power went out and didn’t come back on for days.

I realized then that I hadn’t been feeling Callum move very much. Dr. Trevett had told me earlier that day that if Callum slowed down at all I should come in and they would keep me on the monitors until the IUT. I debated whether I should go in or not. I really didn’t want to get out on the roads in the storm so I checked Cal’s heartbeat with my doppler and it sounded normal. He was moving every now and then, but his movements were way more inconsistent and sluggish than usual. We played board games by candlelight and ate curry that night, which was fun, but I worried and monitored Callum’s movements, going back and forth about whether I should go in or not. It seemed like every time I decided to go in for monitoring, he would kick and I would change my mind. I was also having pretty regular contractions but ignored them since that is normal for me, especially in the third trimester.

That night I hardly slept because I barely felt my boy move. The next day my contractions picked up and I started timing them. They were coming consistently, every six minutes. I still didn’t go in because Callum was moving just enough to keep me from panicking and the contractions never got closer than six minutes apart. Wednesday morning I got up in the pitch black that is 4 am with no electricity and got ready in the darkness. I loaded the car up using my phone flashlight to see and drove to the hospital through the dark streets that were usually lit by street lights. Lots of trees and branches were down and traffic lights were out. The brightly lit hospital was such a relief when I got there. Dr. Trevett was there ready for the transfusion (he always made my heart feel steady) and the blood was being checked in. It was the one and only time I went in for an IUT all by myself. My husband Josh had to work and my mom was keeping Nora and my boys back in Alabama and I had insisted that I would be ok by myself.

I changed into the hospital gown and got hooked up to the monitors and waited for Dr. Trevett to get the OR ready for the procedure. The monitors picked up my contractions right away. I noticed pretty quickly that the baby’s heart rate seemed to be slowing down a lot after my contractions. After one especially big dip, the nurse came rushing in and told me to lay on my side while she paged Dr. Trevett. Her voice sounded urgent and he was there calling for an ultrasound before I knew it. They brought in a portable ultrasound machine and Dr. Trevett scanned Callum looking for signs of distress or hydrops. He said everything looked fine and Callum even passed the biophysical profile almost right away. Dr. Trevett decided to watch the baby’s heart rate for a few minutes and then he would decide what to do. He told me that the baby might have to be delivered if he was showing more signs of distress. I couldn’t believe they were seriously considering delivery. I was only 34 weeks and I was all alone and I just was not prepared to give birth right then. I woke Josh up with a text saying the baby MIGHT possibly be born that day and for him to start packing a bag just in case. Right then I had a hard contraction and as the contraction eased, Callum’s heart rate just plummeted. Dr. Trevett and the nurse both came running in and Dr. Trevett said the baby was coming out. He explained that Callum was definitely showing signs of distress and was telling us that he needed to be born as soon as possible. The IUT procedure does come with risks and it would be really unwise to do an IUT on a baby who was already in distress. If he did, chances were high that Callum would have to be delivered by crash c-section and would not be in good shape. I asked if I could be induced but he said that there was no way Callum would be able to handle the whole labor and delivery process if he wasn’t even handling these contractions well. Induction would also most likely end with a crash c-section. Thankfully my OB, Dr. Howard, was the doctor on call that morning so he was paged. I quickly got one last picture of my pregnant belly. My last bump picture ever.

The anesthesiologist was there before I knew it inserting my epidural. I felt REALLY floaty after that but still needed to send out a few texts to family and my best friend to let them know what was happening. It felt like my fingers were in wet cement and it felt like a tremendous effort to type out each letter. My texts were hilariously short and to the point. My friend Shelly was completely caught off guard by this text I sent her-


I was a little scared and I was really sad that Josh couldn’t be there for the birth (it’s about a four hour drive) but overall I felt a deep sense of peace and excitement going into that operating room. You know that Christmas Eve feeling from childhood when you know you are so close to opening your presents? That intense sense of anticipation and joy…that’s how I have felt right before each of my babies was born, besides Lucy of course. Even though Callum’s birth was very different from the births of my other four children, that magical sense of joy and excitement was still there. One of the nurses took pictures with my phone for me and the c-section was completely painless. I still was in shock that they were delivering my baby right then! They asked if I wanted to watch him being born (blood doesn’t bother me at all) and I said absolutely!

*WARNING- Semi-graphic pictures ahead*

They lowered the curtain between me and the doctors and then they pulled my miracle baby out and he was beautiful!

I was flooded with gratitude and relief to know my baby was alive and out of my body. Even though it was my body that had grown and nourished my son for months, it was also my own body that had worked so hard to destroy him. It felt amazing to finally get him out of there! It took a little while for Callum to cry but he finally did and it felt really unnatural for him to not be on my chest where I could comfort him. I couldn’t even see him.

They worked on him for a few minutes getting him stabilized, and they drew blood to see if he needed a blood transfusion. His apgars were 8 and 9 which was better than I had expected. He had some trouble breathing so they put him on a CPAP machine to help him breathe.

I finally got to see my son and he was perfect. Callum Joseph Thomas, born at 34 weeks 4 days, weighed 6lbs 6oz and was 18.5 inches long.

They whisked him off to the NICU and then I was alone with no baby and no husband, which was really weird. But the peace and the joy of having a living baby still lingered like a warm scent. They took me to the recovery area and that was kind of emotional for me. All the women who were brought to recovery had their babies with them and their husbands were there too. The babies cried and everyone congratulated each other and I laid there all alone in the corner wondering what was happening to my baby. A doctor came to update me on how Callum was doing. His hematocrit was 18, hemoglobin was 6 and cord bilirubin was 5. This meant that he was very anemic and his bilirubin was very high, which is what we were kind of expecting. They immediately put him on phototherapy lights, started an infusion of IVIG and started his blood transfusion. They were able to use the blood they had prepared for the IUT for Callum’s blood transfusion. I’m so glad the doctor took an aggressive approach treating Callum’s HDN (hemolytic disease of the newborn) because it prevented the need for an exchange transfusion and they were able to keep Callum’s bilirubin below brain damage levels.

Three of Dr. Trevett’s nurses came up to see me, which was so sweet and encouraging. They had all worked so hard to help get Callum here alive and I appreciate each one of them so much. They congratulated me and asked how he was doing. It was nice to finally have visitors and to be congratulated on my new baby like the other women in recovery (even if it wasn’t my husband or family members.) I cannot praise Georgia Perinatal Consultants enough for the amazing care they provided during my pregnancy. They went out of their way to make sure I was comfortable and Callum was safe. I often had to schedule ultrasounds last minute duringmy pregnancyand I was only willing to see Dr. Trevett but they always worked me in. If you are pregnant and dealing with isoimmunization and are in Georgia, Alabama or surrounding areas, I strongly recommend using Dr. Trevett at Georgia Perinatal Consultants. Anyway, I was finally taken to my room after that and I got settled in. The nurse told me that my epidural would stay in and I wasn’t allowed to eat or get out of bed for 12 hours post surgery. This meant that I wasn’t allowed to go see my new baby for 12 hours after birth. Of all the 19 days that Callum was in the NICU, those first 12 hours apart from him were by far the hardest emotionally. My whole being ached to hold him and be with him. It vaguely reminded me of when Lucy was born and she was taken away and I was left absolutely empty in that hospital bed. Except this time my heart was full of joy and gratitude and everyone who walked in the room congratulated me. Iknew my separation from Callum was temporary but I still ached for him. One of the nurses brought me a picture of Callum in the NICU and I clung to that picture and looked at it constantly. It was such a comfort to me.

Josh finally arrived and we tried to decide whether he should go see Callum in the NICU or wait until I could see him and both go meet him together. I really wanted to see the look on Josh’s face when he saw his son for the first time, but in the end he just couldn’t wait. He wanted to meet his boy and I wanted him to check on Callum so he went down to the NICU without me and met his son. I will always mourn the fact that I didn’t get to watch Josh meet his son for the first time. He came back to my room gushing about Callum and we marveled that our baby was here alive. I watched the clock and counted down the minutes until I was finally allowed to get out of bed and go see my baby boy. Josh wheeled me down to the NICU late that night and I finally got a closer look at my beautiful little Callum.

Despite being almost 6 weeks early and being hooked up to breathing support and lots of different monitors, IVIG, etc. Callum looked healthy and perfect and I was filled with awe. Over the following days our family members trickled in from Alabama, Tennessee and South Carolina to meet our miracle boy who they all had been praying for for months. Callum had three rounds of IVIG, two days on CPAP, several days of phototherapy lights, and two blood transfusions before being released from the NICU 19 days after he was born.

img_7487

Dr. Trevett holding his namesake on discharge day

 

We brought Callum home from the hospital on October 2nd, about three weeks before his due date. He had one more blood transfusion at about six weeks old and was released from hematology at two and a half months. He is perfectly healthy with no lingering effects from the antibodies that tried to kill him in the womb. His brothers and his sister are obsessed with him and he has brought so much joy to our family.

img_4749

In 2013 after we lost Lucy we went on to lose our two “rainbow babies” in early miscarriages; Jude in July and Pax in October. We named our third lost baby Pax because it meant “peace” and we were trusting God to fill us with peace even in our pain and devastation. I realized when I brought Callum home from Atlanta that in the end, I brought home my two living rainbow babies in July (Nora in 2015) and October (Callum in 2017), the same two months we lost Jude and Pax. I also realized that Callum’s name means “peace” just like Pax. God redeemed so much pain with these two miracle babies I got to bring home from the hospital. As I was finishing up this blog post today I decided to look back in my journal from October of 2013 when I lost my third baby in eight months and I found on that page, the exact verses that I started this blog post with, Isaiah 41:17-20. I praise God for writing such a remarkable story for my life and for using our pain and suffering to create something beautiful. I encourage those of you who are still waiting for your miracle and for your redemption not to give up hope. Keep clinging to hope, keep waiting in faith. God will give you the strength to continue and one day you will have your own story of healing and redemption to share with others.

Isaiah 40:31 Yet those who wait for the Lord will gain new strength; They will mount up with wings like eagles, they will run and not get tired, they will walk and not become weary.

Thank you, God, for our Callum Joseph Thomas and for the many amazing people who had a hand in bringing him here safely. He is our tangible reminder of your love and your faithfulness.

img_6796

All Clear

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

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

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

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

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

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

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

ISO Moms From Europe

I need your help! If you are from the UK, Germany, France, Italy or Spain and have had a pregnancy with HDFN (hemolytic disease of the fetus and newborn/isoimmunization) which included an intrauterine blood transfusion, you are needed for a research study. Your story could possibly help protect babies in the future and prevent other parents from going through what you went through (and you can make a little extra money while doing it.) A research study is being done on a new treatment for HDFN and they need women from Europe who are willing to do an hour long interview about their experience with antibodies during pregnancy. They will pay you $100 for your time. Here is a little more information about it from Ms. Benson-

We invite you to take part in a confidential 60 minute phone interview to discuss your experience with HDFN (Hemolytic Disease of the fetus and Newborn). We offer $100.00 for your time on the phone. We are working on behalf of a pharmaceutical manufacturer who is exploring the development of new treatment options to treat women affected by HDFN. The company is interested in understanding the experiences of mother’s affected by HDFN in order to help them better understand patient needs so they can work to develop the best treatment possible for this disease of high unmet need.

The central objective for these qualitative interviews is to explore the patient journey for patients with a history of HDFN including:

· How you received your diagnosis

· What types of treatments you received

· What types of treatments your baby received

· How HFDN has impacted your life

· Your thoughts on a new product in development to treat HDFN

bioStrategies Group is a consulting firm specializing in helping clients develop and commercialize innovative technologies to better serve patients, physicians and the healthcare system. Our clients include major pharmaceutical, diagnostic and biotechnology companies 

I did the interview already and it went great. The treatment sounds amazing. If you would like to participate please email me, Bethany Weathersby at bethanysk55@yahoo.com or Julie Benson at benson@biostrategies.com

Transfusion #6

Today is our baby Callum’s due date! It is hard to believe he is almost six weeks old on his due date.


Yesterday, Callum had his sixth blood transfusion (third post birth transfusion.) His hematocrit had held steady at about 29 the past few weeks but this week it suddenly dropped to 23. He wasn’t eating well and was more irritable than usual so his hematologist and I thought it was best to go ahead and transfuse. The doctors and nurses at Children’s of Alabama have been so wonderful, just like they were with Nora a couple years ago. They called IV therapy to insert Callum’s IV since he is so tiny and they hit his vein on the first try. They also had to double check his blood type since it had changed since birth. He was born O- because he was 100% donor blood at birth, but since then he has started making his own blood so yesterday when they tested him again, his blood type was O+. During the blood transfusion I was able to breastfeed Callum (some hospitals don’t allow baby to eat at all until the transfusion is finished) and I had a comfortable recliner to sit and hold him in the whole time. He handled it really well and slept in my arms or nursed throughout the transfusion. I think he was just happy to have a whole day of Mommy’s complete attention for once.

We will do blood work again in about two weeks to see how Callum is doing. They tested Callum’s blood yesterday to see if he still had some of my antibodies circulating in his system and he does, which means the new kell positive blood he is making now will be attacked by my antibodies. Hopefully soon he will be antibody free and he will be making all of his own blood with no further need for transfusions (like Nora.) Ok, I can barely keep my eyes open so I’m off to bed!