Category Archives: Rainbow Baby

First MCA Scan

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On Monday I had my first MCA scan at 14 weeks and 1 day. We started MCA scans at 14 weeks with Callum as well and with Nora we had the first MCA scan at 15 weeks. I was very nervous leading up to the scan and expected there to be no heartbeat. I kept imagining how I would tell the siblings that their baby had died and wouldn’t be coming home. Thankfully we saw a good, strong heartbeat right away. The ultrasound tech measured baby and of course (s)he was measuring about a week or two ahead. Baby was super active and there was no extra fluid collecting around organs (ascites) so that was encouraging. The PSV numbers ranged from 20-22. According to this calculator, that would put the MoMs between 1.04- 1.14 which is in the normal range and does not indicate any fetal anemia. Dr. Moise reminded me that even severely anemic babies at this early gestation don’t show signs of hydrops or ascites so the lack of fluid build up doesn’t necessarily mean baby isn’t anemic. He also reminded me that there are technically no accurate PSV values below 18 weeks gestation that have been researched so he doesn’t know how accurate the calculator is before 18 weeks. There was one study done in Thailand in 2007 where they gathered data to showed normal PSV values for babies as early as 11 weeks gestation. But their MCA/PSV values differ from the values that we use now at and after 18 weeks, so I don’t know how confident I feel trusting these values either. Here is the chart of PSV values from the Thailand study done in 2007:

The values are quite different from the ones shown on both of these commonly used PSV calculators:

https://medicinafetalbarcelona.org/calc/          http://perinatology.com/calculators/MCA.htm

For instance, these are the PSV values that come to a 1.5 MoM at 18 weeks according to each calculator:

Thailand study:                                                          1.5 MoM at 18 weeks =  30.9 PSV

https://medicinafetalbarcelona.org/calc/:            1.5 MoM at 18 weeks =  34.5 PSV

http://perinatology.com/calculators/MCA.htm:  1.5 MoM at 18 weeks =  34.9 PSV

According to the Thai study, my baby’s MoM at this last scan was just under the 1.5 cutoff. According to the Fetal Barcelona calculator, my baby’s MoM was 1.14 at the highest. I think Dr. Moise prefers the Thai study since it has data backing the numbers, but he goes with the perinatology calculator at 18 weeks and up (which is different from the Thai study numbers.) This has made me very uneasy since we basically don’t know if the baby is anemic or not. One thing I do know though, is that Callum’s PSV numbers were slightly lower than this baby’s at 14 weeks. His numbers ranged from 15-20, so that makes me worried that this baby is indeed Kell positive.

One good bit of news is that my titer is still much lower than it was before my treatments started. At the beginning of the pregnancy my Kell titer was 2,048 and after my 3 rounds of plasmapheresis it was down to 128 (several weeks ago.) They just tested my titer again on Monday to see how high it is now and it was 256. That is much better than 2,048. It’s still a very high Kell titer, but I feel encouraged that it hasn’t bounced back up into the thousands. That has given me a small bit of hope this week. Here is a picture of our beautiful baby at 14 weeks:

Please keep praying for us and for our baby and the medical staff treating us. They are going through a lot of extra stress as they try to meet the needs of their patients while dealing with the COVID-19 pandemic. They also have families of their own who they want to keep safe. It’s a hard time for everyone, especially those who are responsible for women and babies already in the middle of high risk pregnancies. I appreciate them so much. My next MCA scan is on Monday in Atlanta and we are still waiting to hear the results from the baby’s antigen test. We will update everyone as soon as we know!

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Baby Weathersby

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We have some big news to share with everybody (although most of you probably already know!) I’m pregnant and due in September on Callum’s third birthday. We are so excited about this baby and we love him/her so much already.

Our journey to this baby has been different from any of our previous babies. With the first four babies it was a given that we would try for another baby in the future. Even when I was pregnant with Nora I thought that if she survived we would be open to another baby once she was a year or two old. But after Callum was born we really felt like we were done and we had pushed our luck far enough. Even though we had previously wanted five kids, we were tired of being in survival mode and we felt like we could be complete with our four living children. After Callum was born Josh and I prayed that God would give us peace about being finished growing our family and that He would give us confidence as we moved into this new phase of life- out of the family growing phase into the next phase, whatever that looked like. But as we prayed that prayer over and over again God started to do the opposite. He didn’t give us peace about being done. In fact one night I dreamed about my child (whose name meant “bringer of good news”) and I could not get this kid out of my head. I brushed it off for a while and finally told Josh about the dream. He said, “We absolutely are not having any more babies.” I agreed with him. But slowly and steadily God continued to bring this baby to mind, this one last baby, and I felt like He was asking me to step out in faith. So I told God that if He wanted us to try again, then He would have to convince Josh. We found out that the M281 trial was open and accepting patients around that time. It looked like I might qualify for the trial so the possibility of having an intervention free pregnancy and a healthy baby seemed quite intoxicating.

To make a long story short, Josh and I discussed this baby for years and we discussed the idea with our doctors in all three states (Georgia, Alabama, Texas.) Josh decided he was ready to try for our last baby, but it was still scary to take the leap. We know that just because God calls us to do something, it doesn’t mean it will be easy, it will work out the way we want it to or that it won’t involve suffering. But we also know that the greatest miracles and some of the sweetest gifts God has ever given us started with a step of faith. We know from experience that our life story will be so much better if we let God write it. His plans for us are so far beyond what we could ever imagine for ourselves.

Ephesians 3:20 Now to Him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to Him be the glory 

When making these pivotal life decisions it always helps me to go back to the question, “What is my goal/purpose in life?” Is it to be comfortable, financially stable and safe? Is my goal to please others around me? If it was I certainly wouldn’t be pregnant with this baby right now. No, those are not our main goals and those things will not bring us fulfillment. My goal is to know God, enjoy Him, obey Him and bring Him glory with my life; to invest in others and love them well. I don’t always accomplish these goals obviously (I am selfish and sinful at the core) but I WANT to. And when I pursue these things I find true fulfillment. I’m reminded yet again how thankful I am to have a husband who shares the same goals.

So far, this journey God has brought us on has been one of stress, suffering, growth and joy. We started trying for a baby last year and we had a very early miscarriage in July, then a 7 week miscarriage in November. At the same time I was trying to start The Allo Hope Foundation which was another leap of faith that God called me to years before. I will save that story for a different blog post. But this past year has been really hard for our family, even though we are doing what we feel God is calling us to. On New Year’s Day I found out I was pregnant again and I had very little hope that the pregnancy would progress past the first trimester. This fear had nothing to do with my anti-Kell antibodies since they can’t hurt the baby in the first trimester. I was worried because I’ve had four early miscarriages in the past and I turned 39 in January, so my odds of having a first trimester miscarriage were high. I tried not to even think about the baby (basically impossible) but week after week and ultrasound after ultrasound, we have been pleasantly surprised by a healthy thriving baby. So far I’ve had 7 ultrasounds and every time I see my baby my heart opens a little more and my love for this tiny person grows.

I am now a day shy of 14 weeks pregnant. Unfortunatley, the M281 trial was not the right treatment path for us for a couple of reasons. We discovered at the beginning of the pregnancy that my Kell titer was higher than it has ever been, 2,048. With Lucy it was 1,024. So this made us very nervous and we felt uneasy about starting treatment as late as 14 weeks. The M281 trial starts the drug infusions at 14 weeks if the baby is Kell positive. I also found out later that my measles immunity test was 1 point below immune, so that disqualified me from participating in the trial. I had checked my measles immunity before attempting pregnancy and I was definitely over the threshold and was considered immune. For some unknown reason that number dropped between then and when I became pregnant with this baby. Thankfully we went into this pregnancy knowing that if the trial wasn’t the right treatment path for us we could use the same treatment plan that we used with Nora and Callum. I started plasmapheresis and IVIG at 11 weeks. After the three rounds of plasmapheresis my titer had dropped from 2,048 to 128. That is a HUGE drop! We were all very impressed with how well those treatments worked. We will test my titer again on Monday to see how high it is now. I fully expect it to be back in the thousands again, but maybe I will be pleasantly surprised. After a double loading dose of IVIG right after my three rounds of plasmapheresis were done, I am now receiving IVIG every week to try to protect the baby from my antibodies.

We still don’t know if our baby is Kell positive or Kell negative. Each baby has a 50% chance of being Kell positive/negative because Josh is heterozygous for the Kell antigen. However, we know that our last 4 babies, possibly all 5 have been Kell positive. Asher, Lucy, Nora and Callum are all Kell positive and we have never had Liam tested so we aren’t sure about him. On Monday, Josh and I will have our blood drawn in Atlanta and Dr. Trevett will have it sent to The Netherlands to have the cell free dna test done. Then we should hear within a week or two whether the baby is Kell positive or Kell negative. We did the regular NIPT blood test a couple of weeks ago to find out gender and have genetic testing and we got those results back. Thankfully the baby tested negative for the major genetic disorders (trisomies) and we will share baby’s gender with everyone once we know baby’s antigen results.

On Monday I will have my first MCA scan done by Dr. Trevett in Atlanta. Baby will be 14 weeks and 1 day and we are praying that (s)he won’t already be anemic. Please pray with us for a healthy baby and no signs of anemia. These weeks (13, 14, 15) are the most dangerous for the baby since the antibodies could possibly affect him/her and there is very little that can be done for an anemic baby at 13-15 weeks. Intrauterine blood transfusions (intraperitoneal) are possible at 15 weeks but they are very dangerous and the survival rate isn’t great. I will update everyone as soon as we have our ultrasound on Monday. We are thankful to have you along for the ride!

 

Fetal Center Reunion

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For the first time in my life, I have a 19 month old toddler and I am not pregnant. With all four of my other children by the time they were one and a half I was already pregnant with their younger sibling. As Callum grows it feels bizarre not to be growing as well with his younger sibling inside. There is a little bit of sadness but mostly a delicious freedom and ease to life, yes even with four kids. To be able to chase Callum or deal with a toddler melt down without fighting back nausea is such a relief. It makes this stage so much easier as a parent. I am enjoying my four kids so much and savoring the absence of emergency in our lives. I love having my body all to myself and being able to sleep through most nights without tending to a baby.

Our baby Callum is doing well and growing so fast. He was a late walker like Nora, but their personalities are more laid back so I’m guessing that is the reason they walked later than their big brothers. Liam walked at 11 months, Asher walked at 8-9 months, Nora walked at 14 months and Callum was 16 months. It’s fun to have all four kids now on their feet and somewhat independent. I am loving this stage of life with the chaos and the sweetness and the hilarity of young children.

In April we drove to Houston for the Fetal Center Reunion and it was a quick but wonderful trip. The last time we were in Houston was when Nora was a newborn. She was only about 4 days old when Josh and I woke up in the early morning hours in 2015, packed up our room at the Ronald McDonald House and drove out of the city towards Alabama. As we left, the sun was coming up and I looked in my rear view mirror at the city doused in morning light and I cried happy tears of disbelief. We had done it. God had done it. Nora was alive and I felt such a surge of love for the city of Houston, for all the miraculous things that had taken place there. So now to be back in Houston with bubbly Nora who never stopped talking the entire trip was very surreal and special. We stayed at an Air B&B in the medical district and visited some of our favorite places in the area. Again, it was surreal to be in these places where I had experienced such emotional turmoil four years prior, completely desperate for my baby girl’s survival. Now here she was playing with her brothers in the same spot, completely healthy and very much alive. I will never get over the miracle of her life and I will never stop telling of the wondrous things God did for us. He is such a faithful loving God, patient and kind and trustworthy. I truly have no good apart from Him.

Here are some pictures of Nora playing in the park in front of Children’s Memorial Hermann Hospital where she was born:

At the Fetal Center Reunion we got to see Dr. Moise and many of the other doctors and nurses who treated us during my pregnancy. I saw some of the women who coordinated my care during my pregnancy with Nora and some of the nurses and ultrasound technicians who monitored Nora every week in the womb and assisted during her intrauterine blood transfusions. All of these amazing people worked together to save Nora’s life and to see them all together again was so special to me. My gratitude overflowed. I’m actually tearing up right now typing this because these people mean so much to our family. It really did feel like a family reunion. They were all so sweet and happy to see Nora. Nora was excited to finally “meet” Dr. Moise (even though he had already met her when she was a baby obviously) and Callum loved Dr. Moise too even though he had no idea who he was. I loved seeing Callum with his namesake and Nora with her hero.

I also got to finally meet one of my most dearly loved fellow antibody mom, Brittany Pineda. She reached out to me several years ago when she was pregnant with her son, Kristian, in her first known alloimmunized pregnancy (anti-D.) I grieved and still grieve with her over the loss of her baby Kristian after his first IUT and encouraged her to try again for her rainbow baby. Long story short, she traveled to Houston for her treatment with her second son and Dr. Moise performed his earliest IUT on Brittany’s baby at 15 weeks. I think that week shaved about ten years off my life I was so anxious. Her miracle baby, Mikah Kristian Joseph was born after 9 IUTs and is now a healthy toddler. Brittany has always been such an inspiration to me and she encouraged me throughout my pregnancy with Callum too. Now our miracle boys share a middle name, Joseph, after our hero Dr. Moise. You can read more about Brittany’s story here in the Fetal Center Newsletter fetalnewsletter-1.pdf

After all of our history together, Brittany and I had never met in person outside of our cellphones. It was amazing to see her and her family face to face finally! Of course we both had to spend most of our time chasing after our toddlers but we got a little conversation in here and there. Here are a few pictures of our families together with Dr. Moise and at the Fetal Center Reunion:

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Callum kept waving at Dr. Moise

Rainbow babies Nora and Mikah, 14 IUTs between the two of them at the Fetal Center:

It was really hard to get a picture of these two together since they NEVER stopped moving! Our boys, Callum Joseph Thomas and Mikah Kristian Joseph:

And of course our favorite part of Houston is always the Korean food:

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.

Happy Birthday Nora Juliet!

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Today our beautiful Nora is three years old. Usually as my kids grow from baby to big kid I grieve the swift passing of childhood, but after our experience of losing Lucy and fighting for Nora and Callum I feel differently as my kids grow. I savor it all like never before and the baby days gone by are celebrated because they WERE. Nora isn’t just a longing or a dream. She is our beautiful reality and we are loving every minute, every day, every year and every milestone we get with her.

Nora is shifting from toddler to preschooler and is growing in so many ways. She is completely potty trained, has stopped using her pacifier, she sleeps in her big girl bed every night and she can get herself dressed, but she still drinks her milk from a bottle, heated up to breast milk temperature 🙈 All of her other drinks are given in a normal cup or sippy cup. Nora is still the most maternal child I’ve ever encountered. Her favorite toys are baby dolls and her birthday party is going to be a baby doll birthday party, of course. Her favorite baby to take care of is her baby Callum. Every morning when she wakes up she immediately asks, “Where’s Callum?” and he is the first person she wants to see. She tries to feed him, change him, boss him, teach him, protect him and play with him every day. It heals my soul to watch their friendship blossom.

Just as the grief for a missing child resurfaces multiple times a day, so the gratitude for my Nora bubbles to the surface again and again and I drink in her life and her light. Not only do I rejoice at knowing all the little details of her unique personality, but I also relish the fact that I get to raise a girl, my daughter. I get to buy dresses and baby dolls and I get to sign Nora up for ballet lessons this fall. I get to throw a little girl birthday party with pink, sparkly decorations and rainbows and baby dolls. I get to do all the things I dreamed about doing with my daughter and there is still a whole future of possibilities I look forward too. I can’t wait to read my favorite childhood books with her soon…Anne of Green Gables, Laura Ingalls Wilder, Little Women, Junie B Jones, and so many more. I just love being Nora’s Mommy and I cannot express how she has enriched our lives over the past three years. We love her so much. Happy birthday beautiful girl 💜

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Life Lately

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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

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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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All Clear

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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.

HOME!

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We brought our beautiful healthy boy home from the NICU a few days ago and it has been an amazing, exhausting whirlwind ever since. Callum’s doctor did a couple more x-rays and lots of blood work after his bloody diaper and all of it came back clear so she was able to rule out the transfusion related gut injury/NEC that we had feared. He has a dairy allergy instead so I’ve cut out all dairy from my diet and he’s on a dairy free formula (with occasional breastfeeding) until all of the dairy is out of my system (it usually takes a few weeks.) Then we will transition back to breastfeeding only. After Cal had his second post birth blood transfusion his oxygen was so much better (no more desats) and he basically took all of his feedings by mouth from that point on. It felt unreal when they told me I could take him home. I showed up at the NICU to get him and his tiny little body was completely wire free for the first time since he was born!

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The hospital has a rule that all babies being discharged from the NICU must be wheeled out of the hospital in their mother’s arms, which felt kind of ridiculous since I had been walking back and forth from the Ronald McDonald House to the hospital parking deck to the NICU and back for weeks. It felt so surreal and wonderful though, to be leaving the hospital with my healthy baby boy in my arms.

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We are overcome with gratitude to God for giving us this miracle and completing our family. Callum was His idea in the first place…a redemptive gift that I do not deserve. I get teary when I think back to the beginning of this year when Josh and I were trying to decide if we were brave enough to try for one last baby and God whispered, “Let me bless you.” over and over again. He encouraged us to be courageous and to trust Him. He had this sweet baby boy in mind and I’m so glad we took that leap. All of the fear and the physical pain and exhaustion and inconvenience was so, so worth it. Watching Nora meet her baby brother for the first time was one of the happiest, most beautiful moments of my life. We grieve the loss of her big sister daily. We ache for the friendship that was lost for Nora when Lucy died. She should have a sister two years older than her. It has been so sad to watch Nora play on the sidelines while her brothers play together every day in their own world that she isn’t really a part of. Josh and I prayed so many times for God to give Nora a sibling friend of her own and now he is here! Callum and Nora are almost exactly the same age distance apart as Liam and Asher and Lucy and Nora. Thank you, Lord, for hearing our pleas and for giving Nora her very own sibling friend.

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Seeing the relief on Liam and Asher’s faces when they are with Callum is so incredibly gratifying.

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I’m pretty sure Callum has a different take on things since he is constantly passed around, kissed, patted, hugged and manhandled by his older siblings. I think he longs for his peaceful NICU days of the past.

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Callum had his first follow up appointment with his pediatric hematologist in Birmingham a couple of days ago and it went really well. He literally slept through his blood draw and his numbers looked ok. His hematocrit was 30 and hemoglobin was 10 and retic had gone up to 1. I really liked his hematologist too. I think Cal will need at least one more blood transfusion before his body is making enough blood on its own, but maybe not. He will have weekly blood draws at the hematologist until he is cleared of his HDN. Thank you all for your support and prayers along the way. We don’t know how we could have done it without you all.