I’m emotionally and physically exhausted so I’ll make this as quick as possible. Today we got some really bad news and some really amazing news. The bad news is that our amniocentesis results came back and Nora is kell positive like her Daddy and her big brother Asher and big sister Lucy (Asher was safe because I didn’t have the antibodies yet.) This is the news we have been dreading. Now we know that Nora will be attacked by my antibodies at some point, since they are specifically programmed to destroy kell positive blood cells. We don’t know when she will start to become anemic, but we know it will happen at some point. She will need intrauterine blood transfusions to survive and she will have to be born early (35 weeks at the latest.) My hope is to get her to 26 weeks at least. It just depends when it is safer for her to be out rather than in. When she is out she doesn’t have to fight my antibodies anymore, but she has to be developed enough to survive on her own.
The good news is that her MCA scan today was the BEST it has ever been! It was 1.16, down from 1.34 (I think that’s what it was) on Monday. This means that Nora is doing great so far and isn’t being affected by my antibodies. She has been active and looked healthy on the ultrasound today. We also got confirmation from the amnio FOR SURE that she is a girl and there are no genetic abnormalities. Our baby is healthy for now, which is such a miracle, especially knowing that she is kell positive. We (and the doctors) think that it is the IVIG treatments that are keeping her safe from my antibodies so far. I am so glad that I pushed for those treatments and that the doctors agreed to go outside of their comfort zone and try something they had never done before.
Our doctors here in Alabama will not try an intrauterine blood transfusion before 20 weeks, they just don’t have the experience they need. They also told me today that they don’t really feel confident doing a transfusion until about 24 weeks. We know that Nora will eventually need a blood transfusion, but we don’t know when. It could be next week or it could be at 30 weeks, although it is more likely to be early since we lost Lucy at 19 weeks and each pregnancy is supposed to be more dangerous than the previous one. We feel like I need to get to Houston, Texas as soon as possible to be treated by Dr. Ken Moise. He kind of pioneered the plasmapheresis and IVIG treatment for this type of high risk pregnancy and he has a lot of experience doing very early blood transfusions, some even before 16 weeks. He’s the expert and I know he will take good care of Nora and me. We also found out that he is in our insurance network so everything will probably be covered. I emailed him today and he said he can treat me but I shouldn’t come all the way there until we know that everything is set up for my IVIG treatments. If I miss even one treatment it could be deadly for Nora since that is most likely what is keeping her safe right now. So, in about a week or two my mom, Asher and I will be driving to Texas and will be there for at least 7 weeks, assuming Nora makes it that far. This is going to be very hard for my family. I seriously miss Josh so much after even one day of him being at work late. I miss Liam while he’s at school and I can’t wait for him to get home. I can’t imagine not seeing them for weeks. We have no idea how we are going to handle this financially. It will be hard for Josh to work and take care of Liam and be away from me and Asher during such a stressful time. My mom can’t miss that much work so she will need to come back at some point…it’s all very overwhelming to try to work out. We are exhausted at this point. It has been one tragedy after the next over the past two years so we kind of felt like we were starting this high risk pregnancy journey already depleted. We had so much hope that baby Nora would have my blood type and we could relax and recuperate for the rest of the pregnancy.
Ok, enough of my wallowing. There are so many things we are thankful for today, that Nora is healthy and not anemic and that she doesn’t have any genetic disorders. We are thankful for Dr. Moise who is willing to take us on as his patients and who always stops what he is doing to email me back. I am thankful that God’s power is made perfect in weakness (because we are so weak right now) and that we can rely on HIS strength and peace to carry us the rest of the way through. Thank you all for praying for us. I feel like He did another miracle today by keeping her safe even while being kell positive. He is doing amazing things and I praise Him for his goodness to us. Please continue to pray for our Nora girl, that she would be safe and healthy and would LIVE. Please pray that God would take care of the rest of our family during this stressful time. Thank you for all of your continued support and encouragement!
Praise God that she is healthy and I believe that God is holding her close and he won’t let anything harm her. Hang in there momma! You are doing awesome! Xo
This is what miracles are for i guess, overcoming that which looks impossible to man.
I am so sorry for the bad news, but if I have learned anything throughout my journey – GOD takes the bad news and weaves it for good! Prayers for you and Nora.
I continue to wish nothing but the best for you and Nora. Your courage and determination are so admirable.
Praying. Please keep us posted as you have time.
Bethany, I am absolutely praying for you, Nora, and the family as you go to Texas and as she continues to develop.
Praying for you, Baby Nora and your family. God will give you strength and new power. Would love to support you financially, please tell me where to transfer. This is the least I can do for all the ministering and healing your blog has given me.
I’m confused – since the MCA scans are so good right now and you’re able to get the IVIG treatments in Albama, why the rush to go to Texas? Can you not continue treatment at home until (God forbid) the MCA scans start to look like a transfusion may be necessary?
That is a very good question. We have considered doing that but it just seems too risky. The problem with anti-kell antibodies is that the baby can get anemic so quickly. We don’t want to wait until there is an emergency and we have to rush to texas to try to save her. We feel safer just going there ahead of time so that if (when) she gets anemic we can have everything ready for a blood transfusion.
This sounds very promising. I hope the treatments continue to work and viability will be here before you know it!