MCA Scan Went Up

Yesterday we had another MCA scan to check Nora’s anemia level. On Tuesday it was 1.18 and by Friday it was 1.32. This is a pretty big jump in a short amount of time so it makes me nervous. I never know if it’s just a random high reading or if it’s the beginning of a rising trend that will end in a IUT (intrauterine blood transfusion.) These are all of her MCA scans so far:

Feb 9  – 1.3-1.48
Feb 13 – 1.27
Feb 16 – 1.34
Feb 20 – 1.16
Feb 24 – 1.18
Feb 27 – 1.32

When I look at the big picture I feel a little better since she seems to bounce around a lot between 1.1-1.4. The cutoff is 1.5 and when that happens she will need the transfusion. Babies who need transfusions before 20 weeks have more risks and a lower chance of survival. Today we are one day shy of 18 weeks. Will you pray that Nora hangs on and doesn’t get anemic until she is bigger (or not at all!)

Lately I have been very stressed out and anxious, trying to pack for Houston and imagine how all of this is going to work out, how our family will deal with this upheaval, how Nora is going to survive this. I had to go through the baby girl clothes and pack a diaper bag since I might not be back in Alabama before I deliver. And how do I pack for a preemie or a micro preemie? What do you need for a two pound baby or a four pound baby? Do they even wear clothes? Do they just stay in their bassinet under the warmer or what? I have no idea, this is all new to me. I also was packing the diaper bag thinking about what I might need if Nora is stillborn. It breaks my heart to even consider it but it is a possibility. I packed some snuggly blankets, hats and hair bows for pictures. Seeing the sweet newborn outfits and the tiny diapers is so hard, not knowing if I’ll ever get to put my daughter in them. The weight on my heart is heavy as I prepare for this trip. My mom, Asher and I will leave Alabama on Tuesday, March 3rd, Asher’s fourth birthday and drive all day to Houston. My first appointment in Houston is Wednesday at 8:45 in the morning. Please pray that Nora has a LOW MCA scan on that Wednesday and shows no signs of hydrops. Please pray that Liam is ok without his Mommy for such a long time. The boys are going to miss each other so much.

With all of this uncertainty and stress I am even more aware of the underlying steadiness of God in my life. He is the bedrock, the unmoving foundation that supports me and I am so thankful for His strength. This is HIS story, after all. He is writing it, He is working out the details and He is completely in control. I can trust Him. If there’s anything my baby Nora is teaching me throughout this whole thing it is that I have to trust in God and leave it all up to Him and that is where I find my peace. I have to give her back to God over and over and over again. Every time I walk into that ultrasound room I have to hand over my baby to Him and say, “She is yours, take care of her.” Because I can’t on my own strength. And can I tell you, it is so freeing to finally let go of control and realize I am not the one calling the shots, He is and He is trustworthy. His mercies are new every morning. He will provide all that I need (and all that Nora needs) for that day and that is refreshingly comforting.

Lamentations 3:22-23 The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is your faithfulness.

Can I challenge you today to just let go of whatever it is you are trying to control and let Him have it? Lay your fear at His feet and rest in His ability to take care of you. His faithfulness is great, His love is steadfast, His mercies are unending and they are new every morning (that includes today!)

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17 Weeks and Still Doing Great!

Just wanted to quickly update how things went at the 17 week scan. Nora is holding steady with an MCA scan of 1.18 (normal!) and no anemia so far. What an incredible miracle, especially since we know she is kell positive! Our sweet Lucy had her first MCA scan at 17 weeks and it was 2.5, which meant she was severely anemic and starting to show signs of fetal hydrops. Nora is showing no signs of anemia and kicking and moving all the time (Lucy stopped moving when she became anemic.) So far all of Nora’s tests have come back normal, all of her organs look perfect, four beautiful heart chambers and a fully formed spine and no hydrops. Thank you, Jesus, for all of these blessings. I take none of it for granted.

We are getting everything set up in Houston so that the IVIG treatments are ready for me when I get there sometime next week. A family friend has kindly offered to let us stay in her home for as long as we need. Since I will be in Houston for at least 8 weeks I will probably stay there for a few weeks and then try to get a room at the Ronald McDonald house near the hospital for the rest of our stay.

I still haven’t gained any weight, which is concerning since I’m 17 weeks, but the doctors (and I) are so focused on the anti-kell antibodies that we haven’t really talked much about other things that are less important. Please pray that I can gain some weight. I am trying my hardest but every bite of food is still forced and I feel nauseated all the time, even when taking Zofran. Also, please continue to pray that Nora does not become anemic and need a blood transfusion. Thank you all for praying and cheering us on. You are so important to our family and so helpful, I can’t thank you enough.

Here I am, so excited to make it to 17 weeks with a LIVING, KICKING baby inside me! (She’s actually kicking the computer on my lap as I type this.)

 IMG_5570And here’s our little fighter doing some gymnastics:

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Dr. Moise’s Study Using Plasmapheresis and IVIG to Treat Severe Maternal Red Cell Alloimmunization

I know most of you won’t be very interested in this, but I thought it might be good for me to post a link to Dr. Moise’s study on plasmapheresis and IVIG. Dr. Kenneth Moise is the maternal fetal medicine specialist who will be treating me in Houston, Texas. I have been doing plasmapheresis and IVIG since I was 11 weeks pregnant and it is probably the reason Nora is still alive right now. My doctors were not going to do this treatment with me, even though I have lost a baby and I have a very high antibody titer (level.) This treatment isn’t the normal protocol and is still considered somewhat “experimental” so the doctors usually don’t offer it initially. This is why it’s important to get this information out there. I printed off this study and took it to my doctors and asked them to reconsider allowing me to do the treatment. I also emailed Dr. Moise and gave his email address to my doctors. They contacted him and then agreed to try using his protocol, even though they emphasized that they didn’t know if it would work.

The most amazing thing about the study is when they compare the women’s previous pregnancies (without the treatment) to the most recent pregnancies (with the treatment.) Out of the nine women in the study, seven of them lost their babies in the previous pregnancy. They lost them at 17, 18, 19, 20, 25, 28 and 31 weeks gestation. With their next pregnancies ALL of the women’s babies survived because they were treated with plasmapheresis and IVIG. The babies were born between 27-38 weeks.

If you are pregnant and have antibodies, this study could be very helpful for you. I think it could be especially helpful if:

  • you have one of the most aggressive antibodies such as anti-D or anti-kell
  • you have a very high titer (in the hundreds or thousands)
  • you have lost a baby to antibodies in a previous pregnancy
  • your baby was severely affected by antibodies in a previous pregnancy

If you are in one of these groups I recommend you print off Dr. Moise’s study and take it to your MFM, preferably in the first trimester. Talk to your MFM about possibly trying this treatment. I asked my MFMs about trying this treatment when I was pregnant with Lucy, but they said she would be fine and didn’t need it and it was experimental. It was my first sensitized pregnancy so she should have been fine, but she wasn’t. Instead of pushing for the treatment, I let it go. I always wonder if she would have survived had we tried the treatment. If you feel like this treatment might be helpful for your baby, keep pushing until they agree to try it. If they won’t, look around for a second opinion with a different MFM, even if you have to drive a ways to get there. I am not a doctor or an expert on this kind of thing, but I am a mother who has lost her child and I hope you can learn from my story. I would love for Lucy and Nora’s story to help another baby. Here is the link to the study:

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*UPDATE- Our kell positive baby Nora was born healthy and happy at 37 weeks and 6 days on July 19th, 2015. I know she survived because of the plasmapheresis and IVIG. I have also met several other women on the ISO Moms Facebook group who have lost babies to antibodies and then have been able to go on and have healthy rainbow babies after being treated with plasmapheresis and IVIG.

Good News and Bad News

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!

Pray for a Miracle

Towards the end of our “adoption” when everything was still going well and Kailee and I were communicating regularly I felt like God spoke to me. I think it was towards the end of September or beginning of October, around the time Kailee asked to meet my extended family and told me she wanted me to be the godmother of the two children that she parents. I felt SURE that Scarlet would be ours in a few short weeks and I was so happy and excited. One day out of the blue I felt like God whispered, “Pray that I will do a miracle in your body.” It was not expected, it didn’t make sense and I tried to pretend that I didn’t hear it. He persisted, “Pray for me to do a miracle in your body.” I didn’t understand what that could mean. I thought maybe it meant one day, years down the road, God would bless me with a biological child or maybe I needed some kind of healing in my body that I didn’t know about. What I wanted to pray was that God would give us Scarlet and that the adoption would go smoothly. That’s all I could think about. I didn’t really want to think about any miracles happening IN MY BODY. It just didn’t make sense, but I heard it so clearly that I couldn’t deny it. I started praying constantly that God would come and do a miracle in my body (whatever that meant.) Of course, I was still praying at the same time that God would take care of Kailee, Peter and Scarlet and that we would have our baby girl in our arms in a few short weeks. Here is my journal entry from the first day in October: FullSizeRender-5 I never would have guessed that Kailee and Peter were about to betray us and Scarlet would not be our daughter. We were left reeling, grieving, frustrated beyond belief. I forgot about the prayer that God had told me to pray. I felt hopeless, like my dreams for a third child, for a daughter, were lost (again.) I had planned to write a beautiful post on my blog titled “Things I Thought Were Lost” and it was going to be about all the things I had thought were lost but were now a reality with Scarlet: a third child, my very own daughter on earth, breastfeeding another baby, seeing my two boys with their baby sister, watching Josh be a Daddy to his daughter. It was going to be a beautifully redemptive blog post, but instead I thought, “All of those things ARE lost.”

And then one day in November THIS happened completely unexpectedly:

IMG_5112 And as I sat there crying in disbelief, staring through blurry tears at those two pink lines I heard that soft whisper again, “Pray that I will do a miracle in your body.” Goosebumps all over. Could this sweet new life be that miracle? I think it is a miracle that we even conceived after trying for so long with no success. It’s a miracle that I got pregnant when I was breastfeeding and not even ovulating (that I knew about.) It’s a miracle that we were blessed with another baby girl. It almost seems too good to be true. Every single time I’ve gone to an appointment and Nora is healthy I feel like He has done another miracle.

Doubt and fear are natural, I struggle with them every single day. I was scared to even write this post because I might look stupid if God does decide to let Nora die. But I am choosing to trust in His power and His goodness enough to let Him work in me however He wants. I have no idea if my baby Nora is going to live. What I DO know is that God still wants me to pray for Him to do a miracle in my body and in Nora’s body. I do believe He is going to do a miracle, whatever that may look like, and it is going to be better than anything I could have ever thought up. Will you join me in praying that God will do a miracle and that His power will be shown through me? I wait expectantly to see what He is going to do.

16 Week MCA Scan and Amniocentesis

Today I had my 16 week MCA scan. Even though we just had a scan on Friday and everything was ok, I was really scared that her numbers had gone up and she was anemic. Her numbers did go up, but not by a lot. On Friday her level was 1.27 and today it was 1.34. This is still considered to be in the normal range (although on the high end of normal.) If it gets to 1.5 Nora will need a blood transfusion, but for now she’s staying steady around the 1.2-1.4 range. The doctor stressed again how important an amniocentesis was, so we finally gave our consent and they did the amnio right there in the ultrasound room. It went smoothly with no complications so now all we have to do is wait. The results should be back sometime next week and they will tell us if Nora has her Daddy’s blood type (kell positive) or her Mommy’s blood type (kell negative.) Please pray that she is kell negative. If she is we can stop all treatments and monitoring and have a normal pregnancy. If she is kell positive she will have to fight for her life and will definitely need intrauterine blood transfusions and be born prematurely.

My next MCA scan is on Friday. There is a small possibility that the amniocentesis could make my antibodies more aggressive so pray that she is kept safe and has a low MCA scan on Friday. These next 4 or 5 weeks are the most dangerous in the whole pregnancy since Nora could become very anemic and the doctors don’t have much they can do to help a baby this early. The further along I am in the pregnancy, the easier it is to treat the baby. Our goal is to make it to viability which should be around the end of April. Nora has a long way to go, but we are doing all that we can and we have to just trust God hour by hour to take care of her.

Today we are thankful that she isn’t anemic and sick and is active with a good heart beat. She is actually kicking me as I type this (which makes me so happy!) Here are a few ultrasound pictures from the 16 week appointment:

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Nora with her hand on her chin

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Tiny foot

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Gender Reveal and Baby Name

Yesterday we had a combination birthday party for Liam (turning 6) Asher (turning 4) and my niece, Camille (turning 7.) At the birthday party we revealed the gender of our miracle baby. Josh’s family was visiting from South Carolina, so they got to be there too. It was so fun. Since the birthday party was lego themed I made cake pops in the form of lego heads with the gender color hidden on the inside.

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Everybody bit into the cake pops at the same time and…….

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We’re having a baby GIRL!

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My little brother John is pretty excited about another niece.

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Liam said he knew it was a girl all along 🙂 Asher is still holding out for a boy who he says will be named “Naeus.”

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It was such a fun weekend, being able to celebrate our boys and our niece and our baby girl. I think everyone felt lighter with the knowledge that baby girl is doing ok for now and is not in distress. We usually don’t announce the baby’s name until birth but we are announcing our daughter’s name now because we would love for people to pray for her by name. We don’t have a middle name yet (we’re trying to decide between three that we love) but her first name is NORA ❤ It means “light” just like her big sister Lucy. Here we are right after the gender reveal. Nora is in there, I promise, she was just hiding I guess.

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We are so thrilled to be having another daughter and we are constantly asking God to let us raise this one on earth. Please continue to pray for our little Nora, who has to overcome such great odds just to get here safely. My next MCA scan is on Monday and I will probably be doing the amniocentesis then too. Please pray that Nora is not anemic tomorrow and that the amnio goes smoothly. Thank you for celebrating our Nora with us!