Ten Months of August

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

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

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

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

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

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

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First and Second IUT

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Well, our baby’s anemia escalated quicker than we expected. At 24 weeks the baby’s MoM was 1.23, which is a good number. Six days later his number had jumped to 1.5. A few readings were just below 1.5 and several were as high as 1.56. This is why it is so important to have weekly MCA scans if you have a critical titer. Many MFMs do MCA scans every two weeks, even for women with high or critical titers. Some MFMs say they will scan every two weeks and if the number goes up to 1.3 they will start scanning weekly. But fetal anemia can happen in a matter of days. I can’t imagine what would have happened if we were scanning every two weeks or waiting for a 1.3 to start scanning every week. My son might not be alive right now if we had. Women with antibodies, if you have a Kell titer of 4 or above or any other antibody with a titer of 16 or above, insist on weekly MCA scans. If your MFM won’t provide the weekly MCA scans, find an MFM who will. It is worth it. Always take the path of least regret.

Dr. Trevett performed our son’s first IUT at 25 weeks and 3 days. I was incredibly anxious and nervous imagining all the things that could go wrong and thinking through what would happen if baby had to be delivered at 25 weeks. I was focusing way too much on the fear and risks instead of focusing on God and leaning into Him for comfort. Time and time again I have seen the consequences in my life of not spending enough time reading my Bible and praying. When I don’t discipline myself and set aside time every day to spend with God I make selfish decisions, I live in fear and doubt and I miss out on so much abundance and peace that could be mine.

Anyway, I’ve been so busy that I haven’t been spending daily time with God and leading up to the first IUT I was an emotional mess. We also had COVID risks and restrictions, protests and a curfew in Atlanta that made things a bit more difficult logistically and emotionally. The day before the IUT I was having a lot of contractions, some spotting and decreased movement from the baby. Dr Trevett told me to go right to labor and delivery once we got to Atlanta. Once we were there the baby started moving more and contractions spaced out and basically disappeared. They watched baby closely and he looked fine on the monitors.

The next morning the IUT didn’t go quite as planned. They had trouble getting good access to the cord (possibly because of contractions and shifting of the cord placement.) The paralytic they gave the baby did not work and he continued to kick and move during the procedure. They gave him a second dose of paralytic and he still continued moving around. The anesthesiologist told me once I was in the OR that he had decided to just use a local anesthetic instead of an IV sedative for me, which immediately increased my anxiety. I asked him to please give me the sedative like we had discussed and he did, but it didn’t seem to take the edge off for me. I still felt completely awake and too aware of the procedure to relax. The baby finally bucked and knocked the needle out and Dr. Trevett decided to stop the procedure. Baby’s beginning hematocrit was 25 and it looked like they got 20 ccs of donor blood into the cord but they weren’t able to get an ending hematocrit because the baby was being so crazy.

The baby never slowed down or stopped moving, which is really not safe during an IUT. I was glad that Dr. Trevett and Dr. Gomez (who helps with all of my IUTs) decided to stop the procedure. They repeated the MCA scan the day after the IUT and the MoM was the same as it had been before the IUT which gave the impression that baby was still anemic. Dr. Trevett decided that he wanted to go in again 48 hours later and repeat the IUT. Selfishly, I was very disappointed that we had to do it again so soon but deep down I knew that was the safest choice for the baby. I called Dr. Moise and discussed the IUT with him and felt much better afterwards. He also thought it was a good idea to repeat the IUT 48 hours after the first.

For the third time in a week we drove the four hours to Atlanta (thank you Mom for watching all the kids for us last minute!) This time I knew I had to do a better job preparing mentally and emotionally for the IUT. I spent time reading my Bible, praying, listening to worship music, etc. I read an Instagram post from Kalley Heiligenthal whose two year old daughter, Olive, died earlier this year. The quote affected me deeply and filled me with courage and peace.

They say motherhood is having part of your heart walk around on the outside, in the elements, wild and open. In my case, part of me is out twirling here on this soil through Elsie and part of me is dancing in heaven through Olive. The day Olive left I sobbed, saying it was all worth it for the 2 years 1 month and 10 days I had her here. It’s worth every one of the million tears, worth the vulnerability, the pain. Loving her is worth it all. What I’d give for my freedoms to be limited again by her, for my body to stretch and swell carrying her, for my sleep to be stunted, another epic Olive breakfast hunger strike and a “you guys have to share with each other or mommy’s gonna go crazy” chat. For another snuggle, another “I yove you”, a belly tickle mid-diaper change. My heart on the outside. But I can’t grasp white knuckle to Elsie for fear of losing. I can’t give way to regret, I can’t control or manipulate and call it safety, I can’t measure my love or calculate my heart to avoid pain. I won’t, because that’s not love. That’s not living. It’s a slow death on earth. Love and fear refuse to coexist, so which one’s hand am I holding? Do it right and you’re at risk. What other choice do we have? That’s being a mother, that’s selflessness, that’s choosing to live fully alive, that’s giving our kids the example they deserve of how to do this life. Being a mom is one of the bravest things that can be done, irrevocably putting your heart on the line. Love is worth that, always. -Kalley Heiligenthal

Her words made me realize that I was trying to grasp white knuckle to this baby, to control and manipulate and call it safety. This baby is not Lucy, this situation is different and these doctors sure aren’t the same ones I had with my first Kell pregnancy. As I did with Nora and Callum, I have to make a conscious effort to remember that I am not in control, I have done my best to choose wise, competent doctors and I have advocated well for this baby. I don’t have to allow fear and trauma from my past rule my life. I can place this baby in God’s hands and trust Him to take care of us both.

The second IUT went much better than the first. Dr. Trevett and I both talked to the anesthesiologist about providing conscious sedation for me during the IUT and he did a great job during the procedure. I felt much more relaxed and at peace the second time. Dr. Trevett sedated and paralyzed the baby and he was completely still during the IUT. The beginning hematocrit was 29 and they got it up to about 45. The next IUT is this coming Friday, June 19.

I feel so thankful for Dr. Trevett and Dr. Moise and the whole team of doctors and nurses who are doing their best to help my baby survive. A week ago I had my last IVIG infusion and our whole family was sad to say goodbye to my home care nurse, Jennifer. Once IUTs start, there is basically no point in continuing the IVIG since the purpose of doing the infusions is to prevent/delay the need for IUTs. Jennifer came every week since my first trimester (sometimes twice a week) to administer my IVIG at home. She was so kind and patient with the kids and she was always an encouragement to me. She even gave us a gift card on her last day so we could buy some things for the baby. Jennifer is just one example of the many people working behind the scenes to keep our baby alive and healthy. These people usually get very little recognition for their contributions, but they are so important. My hematologist, Dr. Franco, my nephrologist who handled my plasmapheresis, Dr. Murphy, the doctors and nurses who surgically placed my permacath and port, the nurses and doctors at the infusion center, the many sonographers who take such care scanning my boy every week, the many people scheduling my treatments, drawing my blood, finding matching donor blood for the baby, monitoring the baby during and after IUTs, my OBs, Dr. Chwe and Dr. Howard, the blood donors who gave their blood in order to help a stranger. There are too many people to list but we are thankful for every one of them. Here is a picture of Jennifer and me on my last day of IVIG:

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Please continue praying for our baby boy who has several IUTs ahead of him before delivery. Please pray for Dr. Trevett and all of the people working so hard to help our son stay healthy. Here are a few more pictures from the last couple of weeks:

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Josh got to join me for the first IUT (only his second time in the OR out of 11 IUTs total)

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16 Week Update and Gender Reveal

We had another great scan yesterday at 16 weeks and 1 day, but first, the gender reveal! The video is too long to upload here on my blog so if you want to watch it you can see it on my Facebook page (Bethany Weathersby.) For anyone who just wants to know now without watching the video, we are having our fourth BOY. We were shocked when we heard we were having another boy but now we are feeling really excited about him. Of course, my heart aches for Nora, who will never have a sister here on earth. The news of another brother did break open my Lucy wound again (which happens often) so that has been hard. But we are also very thankful to be given another baby to love and parent. Sometimes I feel like the luckiest person in the world. My mom (who has five kids as well) often says she feels like the richest person in the world when she thinks about her kids and grandkids, and that’s how I’ve been feeling lately- the luckiest, richest person in the world to be given five children.

Yesterday baby’s PSV was consistently 22, which is lower than last week! Using the PSV and the gestational age, that can be calculated to a 1.04 MoM, which is normal and does not indicate anemia. Baby’s heart function looked great, he was super active and of course, there were no signs of fetal hydrops or fluid build up anywhere. Dr. Trevett checked the cord and placenta placement again and it is in the perfect spot for an IUT when it is time to do one. It was kind of hard to get a good picture of baby boy since he was so active and kept kicking and flipping all over the place. Here are a couple of pictures from the ultrasound yesterday.

Dr. Trevett also checked my antibody titer again yesterday. Usually once the titer is critical (4 for Kell and 16 for the other antibodies) there isn’t much need to continue checking the titer since the baby is being checked every week with MCA scans (or SHOULD be checked every week with MCA scans.) Remember, the titer just tells you “how many sharks are in the water with your baby” and the MCA scan tells you “whether your baby is being attacked by the sharks and to what extent.” In my case my antibodies are more aggressive than most, and my titer was VERY high at the beginning of the pregnancy. This is why I have been doing plasmapheresis and IVIG to protect the baby until he is far enough along to receive intrauterine blood transfusions. My titer at the beginning of the pregnancy was 2,048 and after three rounds of plasmapheresis my titer was 128. Three weeks later they checked my titer again and it was 256. The reason they are keeping an eye on my titer is because if it reaches 1,024 or above we will do more plasmapheresis treatments to try to bring it down. Yesterday my titer was back down to 128, which is amazing news! I don’t know why it went down but as Dr. Moise said, no need to argue with success. I was expecting it to be much higher but for some reason it isn’t bouncing back up to the thousands.

Dr. Trevett and I also discussed Coronavirus scenarios (at my request, of course) and he said that if I get the Coronavirus, he will continue to treat me as usual, just completely covered in protective gear from head to toe. If he gets the Coronavirus he has to be isolated and won’t be able to treat me. In that case, I will drive to Houston and be treated by Dr. Moise. Hopefully we will be able to avoid the virus but it still makes me feel more confident just having a tentative plan in place.

Since my appointment yesterday I have finally allowed myself to hope that we might actually be able to bring this baby home alive one day. I’m only 16 weeks, so we still have a long way to go, but each week that passes without intervention is such a gift. Each week brings baby’s survival rate up a little more. Again, I feel like the luckiest, richest person in the world to be given this chance to have five children, a lifelong dream of mine. I thought my dream of a big family was destroyed along with Lucy in 2013, but somehow here I am pregnant again with a healthy baby boy. My next scan is on Monday at 17 weeks and 1 day. I will update the blog afterwards! Thanks so much for encouraging us and praying for our baby boy.

Reliving the NICU

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Last year at this time my newborn Callum was in the NICU and I was staying at the Ronald McDonald House with two year old Nora and my Mom (most of the time.) Since Callum’s first birthday I have been surprised and kind of annoyed by the waves of emotion I’ve been experiencing. The days he spent in the NICU replay vividly in my mind. That night when Josh had to drive Liam and Asher back to Tuscaloosa and I was left alone in the hospital recovering from my c-section and I hobbled down to the NICU at 2 am because I missed my baby so much. I couldn’t hold him yet, I couldn’t breastfeed him or have him in my room, but I COULD look at him, so when my thirst for him just could not wait another minute I walked all the way to the NICU without a wheelchair for the first time, alone. When I finally saw him the pride and goodness of my boy filled me up, but the nurse was visibly irritated by my presence. She side eyed me standing there next to his bassinet and I asked if he had taken anything by mouth. I had been waking up every three hours to pump and then getting up to wash all the pump parts and labeling the breast milk and sending it to the NICU, so I was proud of the breast milk that was available for him now. “Yeah, he had formula and did a pretty good job with the bottle.” “Oh, why wasn’t he given breast milk?” I asked. “I just reached in and grabbed whatever was there and it happened to be formula. He’s been crying for the past hour and I just got him to sleep. It’s not even feeding time so please don’t touch him. It’s not really time for you to be here.” she said. I was stunned into silence. Right after he was born my nurse had told me I could go down to the NICU and see my baby any time I wanted. But now, the one thing that brought me comfort, being able to physically be present with Callum and see him in the flesh, this nurse was taking it away from me? And he had been screaming for an entire hour without his Mommy. And the milk I had worked so hard to pump for him was left in the cooler. I didn’t say anything and stood there like a little kid who just got in trouble for coloring on the walls. Post pregnancy hormones coursed through me and I crumpled into tears and just sobbed, heaving and heaving. It was so embarrassing. Snot and tears trickled down my face and I stood rooted there, body aching from being on my feet for so long but I didn’t know what else to do. The nurse felt awkward and handed me a tissue. I wiped my face and hobbled out the door, down the hall, into the elevator back up to my hospital bed, crying the whole time. I know the nurse probably had a long day and was tired of taking care of somebody else’s screaming baby and wasn’t trying to hurt me, but I felt completely defeated. Now in hindsight I’m irritated with my self for not standing up to that nurse and explaining that if they had certain visiting hours for parents they should have told me, and please give him the breast milk I sent for him. Why do I even care? Callum is literally playing right in front of me right now and he is perfectly healthy and he’s with me ALL OF THE TIME. He has no recollection of that incident so why am I wasting my emotional energy on it right now?

I think having a baby in the NICU is hard for any mother but it’s even harder after you have lost a baby. It’s hard to be empty handed after giving birth, AGAIN. At the time I was in survival mode…pump, go visit Callum, drop off milk, breastfeed, go back to be with Nora, take care of Nora, eat, pump, head back to Callum, etc. (there was very little sleeping going on.) But now, in hindsight, I can make a bit more sense of how I felt. For some reason while Cal was in the NICU I felt like my parental rights were waived and the nurses were his parents, calling the shots. I had to be given permission to hold my own baby or to even be there by his side. I had to ask if I could touch him, feed him, hold him, change him. Most nurses were amazing and I was overcome with gratitude for these women who poured so much love into my baby. They even sent a card to our house after we got home with Callum congratulating us and thanking us for choosing them to care for Callum, which was so amazing. But my mind flits past that and settles on the one nurse who, after I had just met with a therapist about how to handle a preemie, broke all the “rules” I had just been taught and roughly picked up my baby, startling him into screams. She moved quickly and suddenly with him and was not gentle. He cried and I just watched because I wasn’t the parent in the NICU. But if my newborn had been in his little bassinet beside me in my hospital room recovering after the birth and a visitor handled my baby that way I would immediately take him out of her arms and not allow her to hold him anymore. The NICU was different, though, and I had to leave my son there all night with that nurse, and I felt sick leaving him there. I couldn’t sleep either because I worried about him. The next morning he was fine and I felt silly for my strong emotions and fears. But now these experiences replay in my head and I grieve again for the days I lost with Callum. I wonder if I should have been more assertive as his mother? Maybe I was too assertive? Since I felt like I wasn’t the parent, it was hard to bond with Callum like I should have in those early days and that is what grieves me the most, I think. I didn’t get to start truly bonding with him until he came home and I was his mother. People asked ME for permission to hold him and I had the choice not to leave him with anyone I felt uneasy about.

I remember how painful it was after Lucy died to hear women complain about how hard the NICU was. I equated the NICU with “live baby” and envied women who got to experience the NICU. In a way I felt like I was one of the lucky ones while Callum was in the NICU which gave me a weird sense that I was not allowed to grieve the losses I was experiencing. They were on such a smaller scale than the losses of the women who gave birth to still babies. But not grieving properly means the grief can fester and erupt later so now, one year later, I am grieving for the things I lost with Callum in his early days. Tomorrow will be one year since he was discharged from the NICU and I’m hoping this weight will lift and I can move on. I am so thankful to have him home now, healthy and thriving, and I revel in the fact that I get to be his Mommy, just me and no one else.

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Happy Birthday Callum Joseph Thomas!

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One year ago today I went in for my fourth IUT, which had been delayed due to hurricane Irma, and I ended up having a baby instead! This past year has been a whirlwind of joy and answered prayers and busyness of daily life with four kids. And underneath it all there has been the peace of knowing that our family is finished growing and our miracle boy is here healthy and safe.

Callum is a sweet, happy boy who loves his family, his pets, all the food he can cram into his mouth, cars and balls and water and books. He is crawling and pulling up but not walking yet. He can say Mama, night-night, hey, cat, eye, uh oh and a few more I’m forgetting right now. He is officially weaned from the breast and drinks Ripple milk instead (pea protein milk) since he is still dairy intolerant. My dream of having a playmate for Nora is coming true day after day as Callum and Nora form a close friendship and enjoy each other more and more as Callum grows.

I have been thinking all day about how to sum up my emotions in one short blog post. I’ve been reliving Callum’s birth all day, which was traumatic and beautiful all at once. I’ve been overwhelmed by waves of gratitude that wash over me throughout the day. Sometimes it almost feels like the breath is knocked out of me when I think about all the miraculous things God has done for me. I remember on Lucy’s first birthday how heavy the grief was, knowing all that we had missed in that one year; knowing how it felt to live an entire year without my child and looking ahead to the many years I still had to experience without her. I thought the weight of it might crush me. Conversely, on Nora’s first birthday and now, on Callum’s first birthday, I have been overwhelmed by the wonder of their lives. Being able to love Callum in the flesh and to watch him grow over the past year has been such a joy and an honor. An unexpected gift. A whole year of memories and experiences that I can treasure for eternity. A whole year of learning who he is, what his voice sounds like, what color his eyes are, knowing his scent and feeling the weight of his warm little body in my arms. Breastfeeding him for 11 months, singing to him in the dark while the rest of the house sleeps, hearing his first word, watching the love grow between siblings, seeing him snuggled up on his Daddy’s shoulder. Just so much goodness. I can’t do it justice with my words. Thank you to everyone who prayed for us and supported us on our journey to Callum. We are so thankful for our boy. Happy birthday Callum! God has great and mighty plans for your life.

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):

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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:

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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.

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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 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.

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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.

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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.

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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.

Two Months and Still Fighting

Our baby Callum is two months old today! He is such a sweet boy. His favorite things are cuddling, sleeping in our arms, Mommy’s milk and Daddy’s voice. He really doesn’t like loud noises, lying flat on his back, bright lights and baths. He is smiling now and holding his head up (but still a little wobbly.) His siblings are obsessed with him (and his parents are too😉)

Callum is allergic to dairy, soy and wheat/gluten so I’ve cut all of those foods out of my diet so I can continue to breastfeed him. It’s a lot of work but definitely worth it. Callum is still fighting the anti-Kell antibodies that tried to kill him in the womb. We did blood work ten days ago and his hematocrit was 31. Today I was discouraged to find out that his numbers had dropped again. His hematocrit was 25 and hemoglobin was 9. His retic was 2 so we know that his body is trying to produce its own blood but the anti-Kell antibodies that remain in his system are destroying the new blood he makes. It’s hard to know when to transfuse and when to hold off on the transfusion. In utero Callum’s need for blood was being met by the transfusions Dr Trevett gave him. This sent the signal to his body that it didn’t need to keep producing red blood cells, so it stopped. Now we need his body to start making blood again but the only way to send that signal is to let him get anemic. We can’t let him get too anemic or he could suffer permanent damage to certain organs or could even die, but if we don’t let him get anemic enough his body will never get the signal that it is now responsible for producing red blood cells. Anyway, Callum has been looking a little pale and has been fussier than usual. Even though he is definitely anemic we are holding off on the transfusion and retesting his blood on Friday. In the meantime I’m supposed to monitor Callum closely and make sure he isn’t having trouble eating or breathing, and if he is I’m supposed to take him to the ER immediately. Whew, it is a lot. We are so sleep deprived because Callum has severe reflux (common with preemies) and he can’t ever lay flat to sleep. Even when he is slightly reclined he is uncomfortable, so that has been hard. I have a stack of birth announcements and thank you cards that still need to be sent out and my blog post about Cal’s birth story is only partially written. My house is an absolute disaster and my kids have had WAY too much screen time (I even let Nora get addicted to those mind numbing YouTube videos where people open Peppa Pig/Shopkins/Mickey Mouse/Paw Patrol toys and count gum balls.) But Callum’s needs are immediate so here I am on the couch holding him upright for an hour after I feed him and watching to make sure he is breathing ok. Everything else can wait.

Two things that are saving my sanity right now:

My Tula carrier that keeps Callum upright and leaves my hands free to do other fun things like dishes, cooking, laundry, two year old diaper changes, etc.

And our Owlet Smart Sock that monitors Callum’s heart rate and oxygen levels. An alarm will go off if his levels are too low or too high and all the info is sent to our phones so we can check his levels at any time.

This is one is too cute not to share. “Callum Weathersby is wiggling”

We have a lot of peace knowing that his heart rate and oxygen levels are constantly being tracked while he sleeps. We actually had heard about the Owlet sock long before Callum was born and really wanted one for him but couldn’t afford it. One day I came across a foundation called Knox Blocks which provides Owlet socks to families who can’t afford to buy them. I submitted a request for one and told them a brief recap of Callum’s story but didn’t really think anything would come of it. One day when Callum was still in the NICU I got an email from them telling me we had been chosen to receive an Owlet sock for Callum! We are so thankful for this gift, especially now while he is anemic. His oxygen levels and heart rate are good indicators of how his body is handling the anemia. I doubt I would sleep at all if it weren’t for this monitoring system. Thank you Knox Blocks, Palmer family and especially, baby Knox💙

Please continue to pray for Callum’s blood levels to normalize and for all of this to be over soon. Thank you!

P.S. I fell asleep several times while writing this so I apologize for any mistakes.