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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Baby is Viable!

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It’s been a few weeks since I updated the blog. Our baby boy is still doing really well and holding his own against the antibodies week by week. I am now 23 weeks and 4 days pregnant which means that the baby is technically viable. The survival rates for a baby born at 23-24 weeks are not great, but survival is a possibility, which is reassuring. Hopefully he has many more weeks on the inside though!

Below you can see his MoMs for the past few weeks (1.5 means he is anemic enough to need a blood transfusion.) I’ll include Callum and Nora’s numbers for comparison.

Here are Callum’s, Nora’s and Baby’s MoMs:

Callum’s MoMs
Nora’s MoMs
Baby’s MoMs

A few weeks ago we noticed that my titer had gone up from 128 to 512 and baby’s MoM was higher so Dr. Trevett decided that we should repeat the three rounds of plasmapheresis.

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After the plasmapheresis treatments I had a double loading dose of IVIG. This seemed to lower baby’s MoMs and my titer went back down to 128. The goal is to help the baby fight off the antibodies and avoid fetal anemia for as long as possible. The later we start IUTs the better since those come with some serious risks and must be repeated every 2-3 weeks until delivery. After the extra plasmapheresis treatments we finally decided it was time to remove my permacath which had been causing problems almost from the start. The permacath is the bulky, double lumen catheter that is used for plasmapheresis treatments. It kept getting clotted and the adhesive on the dressing caused allergic skin reactions. Since the baby is now viable and IUTs are a little bit safer there is no need for any more plasmapheresis treatments, so we knew I wouldn’t be needing the permacath again. It was such a relief to get that thing out of my jugular! I finally was allowed to shower/swim for the first time in 9 weeks and I can pick Callum up without worrying about snagging or pulling on the permacath. I now just have the regular port under my skin that we use every week for my IVIG infusions. That will be surgically removed once we finish IVIG treatments (whenever the first IUT is needed.) Here’s a picture of the permacath before and after removal.

Our baby is still measuring big, usually about 2 weeks ahead, so that is a comfort knowing he will have to be born early. Dr. Trevett’s goal is to do the last IUT at 34-35 weeks and deliver 2-3 weeks after that. But we know realistically that the baby might have to be born anytime between now and 37 weeks. Please pray that the baby will not be born until August (when I’m 34+ weeks.) Here are some pictures of my gigantic belly and our sweet boy. Thanks as always for your amazing support, prayers and encouragement as we navigate this stressful pregnancy.

 

Baby Brother Update- 17 and 18 Weeks

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Our baby boy is still holding steady and doing well. At 17 weeks his MoM was 1.08. Yesterday at 18 weeks his highest MoM was 1.2 and there were no signs of extra fluid, dilated heart or echogenic bowels (possible signs of anemia.) He is growing beautifully and now weighs 9 ounces. He consistently has been measuring about a week or two ahead each time. I fall more in love with him at each ultrasound. What a blessing to get to see my baby grow week after week. He is always super active during his scans. This week the ultrasound tech told me he was the most active baby she had ever scanned. Here are a few pictures from his 18 week ultrasound:

This week has been difficult for me emotionally since this is the gestation that we found out Lucy was severely anemic. As I did during my pregnancies with Nora and Callum, I can’t help but compare this baby’s MoMs with Lucy’s MoM at 18 weeks. Here are all of their numbers together. Remember, 1.5 means the baby is anemic and needs an intrauterine blood transfusion. The closer to 1 the better.

All taken at 18 weeks gestation:

Lucy:     2.5             (no plasmapheresis, no IVIG)

Nora:     1.3-1.48     (plasmapheresis and IVIG)

Callum: 1.3              (plasmapheresis and IVIG)

Baby:     1.2            (plasmapheresis and IVIG)

All of the conversations I had with my MFMs in Alabama during my pregnancy with Lucy come back to me now- asking them to please do an early MCA scan to check Lucy for anemia, asking if we should start plasmapheresis and IVIG treatments, asking for more monitoring, etc. I think of the many times my concerns for Lucy were brushed off. The consequences of those doctors’ decisions still ripple through our family monthly, weekly, daily. Yet the doctors had no consequences and even more disappointing, they didn’t learn from their experience with Lucy. That large teaching hospital still has not updated their monitoring/treatment protocols and they do not offer plasmapheresis and IVIG to patients in similar situations. This is why I have to drive four hours each way just to get an ultrasound every week. Why, after seven years, has there been no improvement? Even after such a catastrophic loss? I think the answer is partially rooted in the fact that the people who made those decisions are not feeling the consequences of their choices. I am. Josh is. Liam, Asher, Nora and Callum are. Lucy got the brunt of it. The other patients who don’t get the best care are feeling the consequences. And it is hard for me to process that emotionally right now. Lucy was worth the extra effort it would have taken for the MFMs to monitor and treat her HDFN correctly. Her life was worth it. I wish they had felt the same way. This baby is getting all of the right care, the right monitoring and the right treatment from an MFM who sees how valuable his life is. It’s beautiful and it’s heartbreaking because Lucy deserved the same treatment that her siblings received and she deserved the same chance at life that they got.

This weekend we had some pretty bad storms in Alabama and there was a possibility of tornadoes in our area. We watched the weather man (James Spann) all day and were ready when the tornado siren went off. All the kids had their helmets on and were in the bathtub within a minute of the tornado warning being issued. Thankfully we were unaffected by the tornado and everyone is safe. James Spann kept repeating a phrase throughout the day that I have not been able to get out of my head. When there were signs of a rotation on radar but they weren’t 100% positive that there was a tornado down, they would still issue a tornado warning for the area. He said, “It’s always best to take the course of least regret.” The phrase resonates deeply with me. So often I see MFMs go the opposite route and provide the patient with the least amount of monitoring possible. But why? What if every single MFM decided to take the course of least regret? If the literature says to scan every 1-2 weeks, then do a scan every week to be safe. Check titers often, check on the baby often. If the MoMs are trending high, then rescan in a few days. Take the course of least regret because the stakes are so high. Lives hang in the balance and the consequences of the doctor’s monitoring and treatment decisions can affect patients for years and decades to come.

Next week will be hard emotionally for me as well since Lucy died at 19 weeks, so I am bracing myself for that. But I am so incredibly thankful for my healthy boy and my amazing doctor who provides such thorough care for us. He leaves no room for regret, regardless of the outcome of this pregnancy.

We checked my titer again this week and unfortunately it has gone from 128 a couple of weeks ago to 512. I will be doing three rounds of plasmapheresis next week in Atlanta and a double loading dose of IVIG right afterwards to try and bring my titer down. Our goal is to help this baby make it as far as possible before needing an IUT. I’m really hoping we can get to viability (22-25 weeks) before needing intervention. Please continue praying for our boy and for our care providers. I hope everyone is staying safe. I will update the blog after next week’s ultrasound.

 

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!

 

Lucy’s Stocking

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Lucy's stocking

I was supposed to write this post several days ago to share The Allo Hope Foundation’s very first fundraiser ever, “Lucy’s Stocking.” Of course I put it off until the last minute. Today is Giving Tuesday and Facebook will match any donation sent to the Allo Hope Foundation on Facebook. But instead of focusing on asking for your donations, I just need to write about the incredible support I have been shown today.

I have actually been in tears on and off all day for two very different reasons. The first reason is that so many friends, family members, antibody moms and even strangers have shared our fundraiser and contributed to “Lucy’s Stocking.” It encourages me to tears because so much of this journey over the past few years has felt so isolating. Going through my pregnancy with Lucy and trying to learn how to advocate for her on my own was extremely difficult and isolating. The hard work of grieving a lost child is also something only I can do myself. Neither Josh nor my friends/family can do it for me. The loneliness of missing her in all the quiet moments that nobody else notices is overwhelming sometimes. It feels like nobody else sees the empty places where she should be.

Maternal alloimmunization is a disorder that is often overlooked and rarely noticed by the medical community, as many of you already know. There is a relative lack of funding and research compared to more well-known medical conditions. Even our babies who are attacked by our antibodies and struggling with HDFN are literally out of sight while battling for their lives in utero. And it feels like our babies aren’t always “seen” by our doctors either, especially when we have to convince them to provide the right medical treatment for our children.

Trying to help other families struggling with alloimmunization and HDFN can also feel isolating. Of course there are many other women who are helping too, but it’s devastating when I try my best to help another woman keep her baby safe and her baby dies. I grieve for her baby mostly behind the scenes as I go about my day, cooking dinner, wiping messy faces, preparing an English lesson but still mourning for this little life that has been cut short. So, in many ways this journey has felt like an isolating one, and sometimes the process of starting this nonprofit organization has felt like an uphill battle. Time and time again I have thought, “I am not equipped for this, I have too many faults, I am inadequate.”

But today I have seen the flood of support from so many people through our first fundraiser and it feels like I’m not actually isolated at all. I’m supported, I’m encouraged and I’m not alone in this fight for better medical care. Maybe our babies really are seen and the value of their lives is not missed. Thank you to everyone who has shown up for us and reminded us that we are not alone. We are not isolated or overlooked.

The other reason I have been crying on and off today is because I got yet another message this morning from someone I care deeply about that said, “There was no heartbeat on the ultrasound today.” Devastated. Flooded with grief for this family. Still in disbelief. Motivated to keep working and growing The Allo Hope Foundation so this doesn’t happen again.

If you would like to read about Lucy’s Stocking, you can find our fundraiser on Facebook at: https://www.facebook.com/AlloHopeFoundation/posts/123222952468227 or if you aren’t on Facebook you can read about our fundraiser on Mighty Cause here: https://givingtuesday.mightycause.com/story/Allohope

Or if you want to donate directly you can do that here:

https://givingtuesday.mightycause.com/forms/Allohope?embed=donation_widget

 

The Allo Hope Foundation

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I hope everyone has had a wonderful Thanksgiving week so far. It has been way too long since I’ve updated the blog!  Nora celebrated her fourth birthday in July and Callum celebrated his second birthday in September. They are growing and thriving and lighting up the world around them. We still can’t believe they are both here safe and sound after we were told we could never have any more children after Lucy died.

I wish so desperately that every woman with these antibodies could have the phenomenal care I received during my pregnancies with Nora and Callum. Unfortunately, it is fare more common to see women receive inadequate care during their alloimmunized pregnancies than the proactive care I had with my last two pregnancies. Nora and Callum are my constant reminders of how these pregnancies can and should turn out if treated properly. For years I have wanted to do something more to fight this disease and prevent other parents from experiencing the trauma and devastation that we have endured. With the encouragement of family, friends, doctors and fellow antibody parents, I decided about a year ago that I would take the leap and try to start a non-profit organization to help support families facing alloimmunization (antibodies during pregnancy) and to help protect babies threatened by HDFN (hemolytic disease of the fetus and newborn.) I have teamed up with some wonderful people and we are so excited to announce that The Allo Hope Foundation is now an official 501(c)(3) non-profit organization.

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Our main goal is to prevent harm, stillbirth and infant death caused by maternal alloimmunization and HDFN. We are dedicated to providing patient advocacy, support and education while promoting research and improving healthcare practices for the condition.

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We are in the start up/launch phase at the moment, raising funds and forming our patient advisory board and medical advisory board. Our first priority is to raise funds and create a website where patients, their families and care providers can find information, resources and support. The Allo Hope website will also allow us to reach our global alloimmunization and HDFN community and bring more awareness to the disease. Come and follow us on Facebook and Instagram and stay tuned for ways that you can help! Thank you to everyone who has prayed for me and encouraged me on this journey for the past seven years, I don’t know where I would be without you.

I Miss My Sister

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Nora has become obsessed with her sister lately. It has taken me completely off guard. I don’t really know how to parent her in this situation since it’s all new to me. Nora wasn’t around when I was pregnant with Lucy and she wasn’t here when Lucy died or afterwards when I was paralyzed by my grief. I don’t think she has ever seen me cry over Lucy since I have more control over my tears now and when I lose control I can still hide it from her. Ever since Nora was born I’ve carried this terrible ache inside for her to know her sister Lucy. I have grieved for Nora’s loss many times, but I have been very intentional about not projecting that grief onto Nora. It’s not Nora’s grief, it’s mine. So I don’t ever say things like, “You would have a six year old sister now if Lucy were alive.” Or, “I wish your sister was here so you could play with her.” If anything I have tried to lessen the loss for Nora by avoiding the topic altogether and never showing her my grief over the loss of her relationship with her sister.

Something incredible has been happening though. As Nora grows and understands more about the world around her, she is becoming aware of her sister’s absence all on her own. I don’t know how or why but her grief over the loss of Lucy has been growing and intensifying. There’s something beautiful about the fact that a four year old can understand the magnitude of the loss of her sister who was stillborn before she even existed. It’s like she knows what she is missing. She often cries in bed at night for her sister Lucy. Sometimes she cries in the middle of the day and nothing I say can soothe her. Often, if she plays with an older girl around Lucy’s age she will come home and cry saying, “I miss my sista Lucy. When can I go play with her?” Nora sometimes asks what kind of toys Lucy has and she asks if she can play with her toys too.

I have tried telling her how happy Lucy is in heaven and that we can see her one day but that often leads to more anxiety because Nora knows she has to die in order to be with Lucy. I’ve tried telling her how fun Callum and her big brothers are and even though she does enjoy her brothers so much, it doesn’t make her loss any less painful. She says she just misses Lucy, not them. I’ve even tried asking her if she maybe wants a baby sister and she says, “No, I want my big sister Lucy.” The other day as I was trying to soothe Nora while she cried, I suddenly realized that I was using all of the typical “encouragements” that others used on me when I was in deep mourning, even though I know they don’t work. “Be thankful you have two healthy kids.” Yes, but they aren’t Lucy. “She is safe and happy in heaven.” Yes but I want my baby with me HERE. “Maybe you can have more kids.” Yes, but they won’t replace the one who is missing. No one can. Why do I think these weak reassurances will work on my daughter when they never work on anyone missing a person they love? I use these phrases because I don’t know what else to do and I want to fix it. I want to lessen Nora’s pain somehow. And this is exactly why other people have used these phrases on me in the past. They just wanted to comfort and lessen my pain.

Yesterday as we were driving Nora asked, “Where was I when you were a little girl?” and I said, “You weren’t alive yet. That was long before you were born.” “Oh, so I was stillborn?” she asks innocently. I catch my breath. How does she know that word? I have never told her what that word means. “No, you weren’t stillborn.” She furrows her brow, “But you said I wasn’t alive so that means I was stillborn.” Wow. She is incredible and I have no idea how to be her mother sometimes. I don’t know how to lessen her pain or fill the gap that her big sister left behind. No one can besides God. But I trust that He can redeem Nora’s losses just like He promises to redeem mine.

I am reminded of the many ripples of destruction that continue to crash through our lives and our family since Lucy died. How many other families are experiencing ripples from their own tragedies that I can’t see? Nora’s grief has humbled me and reminded me to be kind and loving to those around me. Just because their loss or their trauma was a long time ago it doesn’t mean they aren’t suffering from the ripples created by that event. Just because I can’t see the suffering on the surface it does’t mean they aren’t struggling. My heart has been softened towards those on the outside of grief too, who don’t know what to say but desperately want to lessen the pain of others. Maybe their phrases are empty words that don’t heal, but they are just trying their best like I am when Nora is crying for her sister and all I want is to take away her suffering.

So, my daughters have humbled me and challenged me to love others better and to forgive when the words aren’t perfect, to give others the benefit of the doubt and to remember that God alone can redeem our deepest losses.

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