Monthly Archives: March 2020

16 Week Update and Gender Reveal

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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.

Antigen Results and 15 Week MCA Scan

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Yesterday Dr. Trevett called with our baby’s antigen results. Right away I could hear the disappointment in his voice. The baby is Kell positive just like our previous four babies. Every baby has a 50% chance of being Kell positive and somehow we get the wrong side of the coin every time. Josh and I are very, very disappointed but we are not surprised. We were expecting another Kell positive baby but we still had hope for a Kell negative baby. I have been pretty overwhelmed trying to figure out how to navigate the rest of my pregnancy with a Kell positive baby in the middle of a global pandemic.

Now we know the baby will be attacked by my antibodies at some point and will become anemic in utero. Until then I will continue to need weekly IVIG infusions and probably another week (maybe two?) of plasmapheresis treatments to lower my antibody titer. I will also need weekly or twice weekly MCA doppler scans to check the baby for anemia. Once the baby is anemic (s)he will need multiple intrauterine blood transfusions before delivery and the baby will be born early, which will include a NICU stay. We are praying that our baby will make it until August before delivery (due date is September 13th.) Besides my weekly IVIG infusions provided by a home care nurse, all of my appointments and interventions will be in Atlanta. This means I will be in and out of hospitals in Atlanta many, many times in the coming months and to be honest, I just don’t know how I will avoid getting the Coronavirus. My family has been self quarantined at home for almost two weeks already but my trips to Atlanta are unavoidable. I also have to make sure I don’t get stuck in Alabama for some reason since no one here can provide the prenatal care that this baby needs to survive. I feel overwhelmed thinking about all of the many puzzle pieces that must come together in order for this baby to survive and for my family to stay safe. So much of this is out of my control.

Even though we are disappointed, we are grieving and we are very worried about the future, we know that we can trust God with all of this. We can trust Him to take care of us and we can trust Him with the lives of our children. He is not surprised by COVID-19 and He is not surprised that this baby is Kell positive. Today these verses were good reminders for me:

Isaiah 64:8 But now, O Lord, you are our Father; we are the clay; and you are our potter; we are all the work of your hand.

Isaiah 45:9 Woe to him who strives with him who formed him, a pot among earthen pots! Does the clay say to him who forms it, “What are you making?” or “Your work has no handles?”

Should I tell God exactly how to form this baby? Should I tell Him exactly how to write my life story? We are all the work of His hands, including this Kell positive baby. I trust the Creator of this baby to do something beautiful and miraculous in whatever way He chooses. The future is uncertain and I’m not sure how to navigate it, but I know for sure that God is there in the future waiting for me and my baby. He has always been with me, He is with me now and He will be with me in the days to come. He will give me the strength I need to face each day, one day at a time.

Isaiah 52:12 For the Lord will go before you, and the God of Israel will be your rear guard.

Deuteronomy 31:8 It is the Lord who goes before you. He will be with you; He will not leave you or forsake you. Do not fear or be dismayed.

Since finding out that the baby is Kell positive I have been so encouraged just by seeing Nora and Callum go about their day, playing, singing, destroying the house, creating things, having hilarious toddler conversations. I had to digest this same news (albeit without Coronavirus in the mix) twice before and now look at these beautiful healthy children I have here with me. Nora and Callum are just as healthy as their big brothers who didn’t have to deal with my anti-Kell antibodies. I remember wondering if Nora and then Callum could possibly survive the pregnancy. Now look at my beautiful babies who aren’t babies anymore (playing on their new slip and slide today):

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On Monday I had my 15 week MCA scan and the baby looked great again. Dr. Trevett couldn’t see any signs of anemia or fetal hydrops. The baby’s PSV numbers ranged from 20-24 and Dr. Trevett goes with the highest, clean scan to be safe so he said 23-24. Using this calculator that comes to an MoM of 1.14-1.19 which is great. Once the MoM is 1.5 or higher the baby will need a blood transfusion. Here’s the baby bump at 15 weeks and 2 days pregnant:

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Photo cred: Nora Juliet

Baby’s next scan is on Monday. Please join us in praying that our baby would survive and won’t arrive until August. Thank you to everyone who has shown us kindness and support so far. We appreciate you all so much. Tomorrow we will share our gender reveal video so stay tuned!

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!

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!