We just found out that our insurance will cover all of my treatments, including the extremely expensive plasmapheresis and IVIG. This is a HUGE answer to prayer! We never could have afforded these treatments if they had not covered them, and many insurance companies don’t. Thank you all for praying! We are praising God for His goodness and provision. Our next big prayer requests are for a good strong heartbeat and a healthy baby at the 10 week ultrasound and for the surgical placement of my port to go well on January 9th. These ports can easily become infected, so pray that mine stays clean and free from infection. Thank you again for praying for us. Each prayer is powerful and important and every one of you makes a difference. We appreciate all of you ❤
We finally have a treatment plan in place to try to save our baby. We worked on this for several weeks with our MFMs (high risk OBGYNs), with other women who have gone through the same thing and with the main expert in this field, Dr. Kenneth Moise from Houston, TX. We feel very confident about this treatment plan and we are so thankful that all of our doctors are on board since it’s kind of a new (some even say experimental) type of treatment.
Sorry if this is a repeat for some people but I just wanted to give you the basics on why our baby is in so much danger. After I gave birth to Asher I developed anti-kell antibodies which will attack blood that has the kell antigen in it (kell positive.) Josh is kell positive (not dangerous to him at all, just a blood type.) All of our children have a 50% chance of being kell positive like Josh or kell negative like me. If the baby is kell positive, my anti-kell antibodies will attack the baby’s blood, making him anemic and eventually possibly killing him. Babies start making their own blood some time at the beginning of the second trimester. Before the baby is making his own blood, there is nothing for my antibodies to attack, so the baby is not in danger. Right now I am nine weeks pregnant and the baby is safe because he isn’t making his own red blood cells yet. If the baby is kell negative, like me, my antibodies will have nothing to attack and it will be a normal pregnancy. Usually, the antibodies get stronger with each pregnancy. My antibodies are extremely aggressive so it is terrifying to think that they might be even stronger with this pregnancy than they were with Lucy.
The only way to know if the baby is kell negative or kell positive is to do an amniocentesis around 16 weeks. The amnio comes with a couple risks that we don’t feel very comfortable with. About 1 in 500 women who have an amniocentesis miscarry as a result of complications from the amnio. Also, some doctors think that doing the amnio could increase the aggression of the antibodies (sticking a long needle into the belly could mix blood and make the antibodies have a stronger reaction.) That would be really bad for us since my antibodies are so aggressive already. Josh and I are still trying to decide whether to have the amnio or not, but right now we do not feel good about adding even the slightest extra risk to this already extremely high risk pregnancy. The doctors can still monitor the baby closely with MCA scans (a special ultrasound to see if the baby is anemic or not.) Honestly, I think if the baby is kell positive we will find out pretty early because the anemia will probably show up on the scans, like Lucy’s did.
So, back to our treatment plan. Even though we don’t know if the baby is kell positive or negative, we will begin treatments at ten weeks and will assume the baby is kell positive. If we wait until we know for sure, it will be too late to start the treatments. On January 9th I will have a “permacath” or a “port” surgically placed (I think it’s going in my chest, but not sure yet.) On January 12th, 14th and 16th I will have three rounds of plasmapheresis done. The antibodies are found in my plasma, so these treatments will remove the plasma and the antibodies (until my body makes new ones.) The next week I will have my first round of IVIG (intravenous immunoglobulin.) I’m still kind of confused about how all of this works, but supposedly the IVIG blocks my antibodies’ ability to attack the baby. I will have weekly IVIG treatments until I’m at least 20 weeks along (hoping I make it that far.) We will start MCA scans to check for anemia at 16 weeks (although I’m still kind of pushing the doctors to start at 15 weeks.) If the baby starts getting anemic, the doctors will have to do an IUT (intrauterine blood transfusion) on the baby. If the baby needs one before 20 weeks, I will be sent to either Cincinnati, Ohio or Houston, Texas to a hospital that is better equipped and more experienced with IUTs on babies so tiny. The smaller the baby, the harder it is to stick a needle into their tiny veins and get fresh blood to them. My doctors here in Alabama feel confident about doing an IUT after 20 weeks because the baby is bigger. They tried one on Lucy at 18 weeks and she died a week later.
If the baby is showing no signs of anemia, we might consider doing the amnio to make sure baby is kell negative. If he is, we will stop all treatments and I can enjoy the rest of the pregnancy. If we still feel nervous about doing the amnio, we will just taper off the treatments and monitor the baby very closely to make sure he isn’t getting anemic. If the baby is kell positive, we will stop the plasmapheresis and IVIG treatments sometime between 20-24 weeks and just treat the baby’s anemia with blood transfusions. Right now, I will be thrilled if this baby can just make it to 20 weeks so that he can get blood transfusions to save his life. I will be over the moon if this baby makes it to 26 weeks so that he can have a chance at life outside of the womb.
I think those are all of the basics. We are trying our best to stay hopeful about this baby and to trust God again. At times I feel like I am having dejavu, this feels so similar to how things were when I was pregnant with Lucy and then before I knew it, she was dead. We were told Lucy had an 80% chance of surviving the pregnancy. This baby has been given a 50% chance. God is not controlled by percentages, though, and just because that happened with Lucy, it does not mean the same thing will happen with this baby. I heard a verse in church a few weeks ago and I felt like it was for me. It filled me with hope.
Isaiah 43:19 Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert.
This baby is a new creation, a miracle in the making. This pregnancy does not have to mirror my pregnancy with Lucy and the outcome is not doomed from the start. God is doing a NEW thing and we can trust in His unfailing goodness and love. We have done our best in coming up with a good treatment plan, now all we can do is pray and trust that the doctors will try their hardest to save our baby and that God will NOT let us down, no matter what happens.
You can also play a BIG part in our baby’s treatment plan. You can pray. Specifically, please pray:
- for the baby to have a good, strong heartbeat at the ten week ultrasound
- that the placement of the port will go smoothly and that it will not get infected while it is in
- that I will not get sick or have migraines (common side effects) while doing the treatments
- that the baby is kell negative
- that the treatments will work and the baby will live, even if he is kell positive
- that the doctors will have wisdom while treating the baby and me
- that our insurance will cover all of the treatments
- that Josh and I will be flooded with peace and will be able to trust God to take care of our baby
- that we will be able to love our boys well and still take care of them throughout the treatments and many doctor’s appointments, and that God will protect their hearts from more loss and tragedy
Thank you so much for sticking with us and praying for all of us. We couldn’t do it without you! We will keep you updated.
* UPDATE- We did end up having the amniocentesis at 15 weeks and found out Nora was kell positive. The amnio had no negative side effects and did not make the antibodies more aggressive. We also started MCA scans at 15 weeks instead of 16 weeks. At 18 weeks I moved to Houston, TX to be treated by Dr. Kenneth Moise. Nora didn’t need her first IUT until 24 weeks. We stopped the IVIG treatments and had my port removed at 24 weeks after the first IUT. She had 5 IUTs and was delivered at 37 weeks 6 days. She had 2 post birth transfusions and is now completely healthy. The treatment plan DID in fact save our baby ❤
God has completely shocked us and blessed us beyond belief and it couldn’t have come at a better time. We desperately needed something encouraging to happen to us after losing Lucy, Jude, Pax and “Scarlet” in less than two years. I was steeling myself for yet another difficult Thanksgiving and Christmas without a baby in our arms or hope in our hearts. When I look at our Christmas tree I can’t help but imagine Lucy toddling over and pulling ornaments off, but it remains mostly untouched. I had envisioned this Christmas with our newborn Scarlet brightening up our family and had even thought through what I would buy her for Christmas, but once again there is no baby girl in our house to buy presents for. I was dreading this holiday season so much.
As many of you know, I had induced lactation to breastfeed Scarlet and had been pumping milk for a few months before October. Most women don’t ovulate when breastfeeding so I had not ovulated or had a period since May, right before I started the process of inducing lactation. Well, after the adoption fell through, I immediately started tapering off the pumping and eventually stopped altogether. I was waiting anxiously for my period to show up (sorry if it’s TMI for some of you guys) but it just wasn’t happening. One day I went to Target to stock up on tampons, thinking I would need them soon. While I was standing in the aisle, looking through the feminine products, my eyes wandered over and landed on the pregnancy tests. “NO” I thought, “surely not.” But I left the store with pregnancy tests and no tampons and quite a lot of guilt for wasting yet MORE money on pregnancy tests that would surely end up being negative. We tried to conceive for a whole year last year before pursuing adoption, so I have spent a lot of money on pregnancy tests. Well, I was completely SHOCKED when my pregnancy test was very positive.
My tests with Jude and Pax never got that dark, the line on the left was much lighter with them, so that was a good sign right from the start. The best way to describe how we felt after seeing the test was straight adrenaline. I felt like there was an emergency, I literally ran around the house holding the pregnancy test, not sure what to do (saying words that I will not repeat on this blog.) I felt like my baby needed saving immediately. I felt like someone should be calling 911. I was also overwhelmed with thankfulness. I thanked God over and over again. For days afterward I would stop randomly, close my eyes and imagine myself running up to Jesus in the flesh and embracing him, tears flowing down onto his shirt. Thank you, Jesus. What a wonderful gift from God, and right before the holidays too.
I had blood work drawn and on Thanksgiving day I got the results that the hcg hormone was rising perfectly, showing that the baby was growing just like he should be. That was our first hurdle in this long journey of obstacles to overcome, and we cleared it without a problem. Right now I am a little over 8 weeks pregnant and we have had 3 ultrasounds already to monitor baby. He (I just know it’s a boy) is looking great so far. We first saw his little heartbeat at 6 weeks and Josh and I both wept. I COULD NOT believe I was looking at my own baby’s heart beating, and oh how I want it to keep beating. I so desperately want my heart to stop beating before that little heart does one day many years from now. I am tired of out living my children.
We know that this baby has been given a 50% chance of surviving the pregnancy because of my extremely aggressive anti-kell antibodies. They will attack the baby if he has his Daddy’s blood type (a 50% chance) and possibly kill the baby in the 2nd or 3rd trimester. If the baby is kell negative, like me, it will be a normal pregnancy. The baby cannot be affected by the antibodies until around 15/16 weeks at the earliest, so if we lost him before that it would be because of a normal first trimester miscarriage that many women (unfortunately) experience. Right now we are working with my MFMs (high risk OBs) to finish up all the details on my treatment plan that I will share in a future post. We are doing things a bit differently than we did with Lucy in hopes that even if the baby is kell positive like Lucy, he can still have a chance of survival.
Today we are praising God for this beautiful new life so healthy and strong. We are praising Him for the perfect heartbeat we saw on the ultrasound yesterday. We are begging God to let us raise this baby on earth. Please pray for our baby. Pray that he is kell negative and that the pregnancy will be normal. Please pray for our doctors, that they would have wisdom to know exactly how to treat the baby and me. Pray that Josh and I would be courageous and hopeful and that we would be able to trust God to take care of our baby. Thank you all for your continued support. We are so grateful to have so many wonderful people on this new, scary journey with us.
Here is our ultrasound picture from yesterday. Our beautiful little sea creature 🙂
This ache for her, this absence in our family, the missing her. It never goes away. Today I was at the playground with Asher and my niece and nephew. Right when we got there I noticed a baby girl Lucy’s age toddling around. My pulse began to race immediately and the anxiety started to grow. I didn’t want to acknowledge her, didn’t want to talk to the mom, didn’t want to see the cute skinny jeans she was wearing that looked just like a pair I bought Lucy that now sit folded in a box in the shed. The baby walked up in front of me and stared at me, hoping for some eye contact and a smile. I heard her mom call her, “Come back over here Lucy!” I felt the breath knocked out of me. My heart literally felt like it was breaking, it was a physical pain. I started crying and my fingers and hands started to tingle and go numb just like they did that one time I hyperventilated years ago. “I have a daughter in heaven named Lucy,” I said through tears, “She would have been her age. She was stillborn.” The mother was very kind and said she was so sorry and that she had recently had a miscarriage so she knew just a tiny bit of how I was feeling. Hours later I am still crying and aching for her. It is still so hard to believe that she is not here.
She will always be missing. I will always be losing Lucy, for the rest of my life. Losing all the moments on the playground and the Christmases and the chubby cheeks and the skinny jeans and the smell of her hair and her wedding day. The depth of the loss is just unfathomable sometimes.
I miss my baby Lucy. I miss having a girl. I miss pigtails and dresses and bloomers. I miss seeing my boys with their baby sister. I miss seeing Josh with his daughter. It feels like I just lost her yesterday, the pain is so fresh. It never goes away- my love for her and my want for her. The ache for my daughter, it just never goes away.