This is so exciting…the post I’ve been waiting to write for so many months now.
We are expecting a baby in October!
No, we are not pregnant, but we are still expecting our third earth baby to arrive in October. We have been chosen by the most amazing expectant mother (“K”) and father (“P”) who’s baby is due at the end of October. K is such an intelligent, strong woman and we are so blessed to have her in our lives, for the rest of our lives. P is also great and we are so thankful that he is supportive and on board with everything. We can’t wait to meet our baby too! K actually found us through the internet, not through our agency, and she just happened to live in Alabama! She is now working through our agency. We only had our online profile up for about a week before she contacted me in May, so our wait was extremely short compared to most. That was a huge blessing for us! Almost immediately, Josh and I agreed that we felt a connection to K and to this precious baby. She told us right at the beginning that she didn’t know the gender of the baby yet, so that was a hard decision for us. We had decided at the beginning of the adoption process that we would try to wait for a girl. We had our hearts SO set on a girl, but after meeting K, we started to feel our hearts change. It was harder for Josh, surprisingly. He was adamant about having a daughter but I just wanted a baby. We talked about it and prayed about it a lot. Meanwhile, K and I were emailing back and forth, getting to know each other. The more we emailed, the more I liked her and fell in love with her and the baby. The more we prayed about it, the more we felt peace about K, P and the baby, regardless of gender. Finally, Josh and I agreed that we loved this baby already and would be open to whoever God wanted to give us. From the very beginning when I have asked God to tell me what to do and how to proceed (Should we do IVF? Should we try naturally? Should we adopt? Should we stop with two?) I have heard Him say, “Let me redeem it.” Well, if He wants to redeem it with this sweet little baby, boy or girl, we want Him to do it His way. So, we are on board, regardless of gender, and we are SO excited and in love with this baby already. After we decided this, K had to go to the emergency room for dehydration and while she was there they did an ultrasound to check on the baby. They said that the baby looked HEALTHY (woohoo!) and they made a guess at the gender. The ER doctor thought the baby looked like a GIRL 🙂 but we still aren’t 100% sure. K will hopefully have confirmation on the gender in the next few weeks, and we will update you when she does!
Thank you all for your prayers and support on our journey so far. We honestly don’t think we would be where we are today without all of you. Would you continue to pray for K, P and this sweet new baby? Please pray that the rest of the pregnancy and the delivery would go smoothly, and that K would have peace and strength to get through this. Pray that P would have peace and strength as well, to be a loving and supportive father and husband. Please pray that God would provide in an amazing way for K, P and their family. Pray that God would show us how to support K and P well and that our hearts would be protected from more heartache. Pray for our sweet new baby- that (s)he is safe and healthy and will always feel loved and confident in who he/she is. I think it’s so amazing that this baby gets to start life off with not two, but FOUR parents who love him/her so much already. Thank you in advance for your prayers and support. We will keep you updated!
When I lost Lucy I knew the grief would overtake my world and would feel unbearable. It did. One surprising aspect of the grief has been the intense pain caused by pregnant bellies and baby girls. They remind me of what I don’t have. Even pictures of my OWN pregnant belly are impossible to look at. It bothers me that they bother me so much. I realized one day that it wasn’t so much about what I don’t have, but what Lucy doesn’t have. It’s a jealousy for her life. Those other babies get to have life, but Lucy’s was snatched away.
Imagine you take your child to a birthday party. At the birthday party they announce that all the kids will be getting presents, not just the birthday boy. They start handing out presents and everyone gets one except your child. How would you feel? You wouldn’t be mad that kids got presents, just mad that everyone got one except your child. You would probably want that present for your child more than he or she even wanted the present. Now, imagine that the present was life. If every child got to live and yours didn’t. This is how I feel around pregnant people and baby girls.
Of course, it is a good thing to be jealous for your child’s life, to want to protect him and do what’s best for him. That’s how God made us. My mother-bear feelings are real and strong, but my thinking is flawed. When I really stop to think about it, I see that Lucy did get life. She got eternal life in the sweetest home ever and she will know her family one day when we arrive in heaven, one by one. She never has to taste fear, or shame or death. She never has to feel lonely or embarrassed or not good enough. She won’t even experience simple things that make us uncomfortable, like being cold or hungry or irritable. She gets an even BETTER present than all the other kids at the birthday party. I know deep down that Lucy got a better deal than Liam and Asher and all of the babies who lived. When we first found out that Lucy might be in danger we went to the elders at our church and had them pray over me and Lucy. They prayed that she would be kept safe and would live. One of the elders said, “I feel like I should share this with you. I think God is saying that everything will be alright with the baby.” He was right. Everything is alright with the baby. She did get life and she is safe and content in heaven.
This past Easter was so hard for me. I had heard before that people who have lost loved ones feel the most sorrow around holidays. I wasn’t expecting to feel that way on Easter, but I did. I made Easter baskets the night before and afterwards I wept and wept because I realized I would never make an Easter basket for Lucy.
When we dyed Easter eggs it felt strange to have Liam eggs and Asher eggs and no Lucy eggs. I felt kind of guilty, like we were leaving her out. I made some Lucy eggs and put them next to her big brothers’ eggs.
Is Lucy really missing out on Easter? What about all the sweet babies that have been lost. Do they miss out on all the holidays we celebrate here on Earth? I think it’s the exact opposite. Imagine what the Easter celebration in heaven looks like! Oh, how exciting it must be to actually celebrate the resurrection WITH Jesus. I’m sure the party our babies have in heaven doesn’t even compare to plastic eggs and Easter bunnies. And imagine the birthday party they have for Jesus every Christmas! I think even a “normal” day in heaven is far more bright and exciting than any earthly holiday we celebrate.
If only we could change our earthly perspective and see the whole truth. I wish we could see our babies that we have lost because if we could see how they are living we would never weep for them again. It’s not the ones in heaven who are suffering, it’s the ones on earth that have a hard path of suffering ahead of them. I think when we cry for our lost babies, God is looking at us, shaking his head with love on his face and he is saying, “Oh sweet children of mine, you are weeping for the wrong ones.”
Luke 18:15-16 Now they were bringing even infants to him that he might touch them. And when the disciples saw it, they rebuked them. But Jesus called them to him, saying, “Let the children come to me, and do not hinder them, for to such belongs the kingdom of God.”
Revelation 21:4 He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.
When I lost Lucy I knew the grief would overtake my world and would feel unbearable. It did. One surprising aspect of the grief has been the intense pain caused by pregnant bellies and baby girls. They remind me of what I don’t have. Even pictures of my OWN pregnant belly are impossible to look at. It bothers me that they bother me so much. I realized one day that it wasn’t so much about what I don’t have, but what Lucy doesn’t have. It’s a jealousy for her life. Those other babies get to have life, but Lucy’s was snatched away.
Imagine you take your child to a birthday party. At the birthday party they announce that all the kids will be getting presents, not just the birthday boy. They start handing out presents and everyone gets one except your child. How would you feel? You wouldn’t be mad that kids got presents, just mad that everyone got one except your child. You would probably want that present for your child more than he or she even wanted the present. Now, imagine that the present was life. If every child got to live and yours didn’t. This is how I feel around pregnant people and baby girls.
Of course, it is a good thing to be jealous for your child’s life, to want to protect him and do what’s best for him. That’s how God made us. My mother-bear feelings are real and strong, but my thinking is flawed. When I really stop to think about it, I see that Lucy did get life. She got eternal life in the sweetest home ever and she will know her family one day when we arrive in heaven, one by one. She never has to taste fear, or shame or death. She never has to feel lonely or embarrassed or not good enough. She won’t even experience simple things that make us uncomfortable, like being cold or hungry or irritable. She gets an even BETTER present than all the other kids at the birthday party. I know deep down that Lucy got a better deal than Liam and Asher and all of the babies who lived. When we first found out that Lucy might be in danger we went to the elders at our church and had them pray over me and Lucy. They prayed that she would be kept safe and would live. One of the elders said, “I feel like I should share this with you. I think God is saying that everything will be alright with the baby.” He was right. Everything is alright with the baby. She did get life and she is safe and content in heaven.
This past Easter was so hard for me. I had heard before that people who have lost loved ones feel the most sorrow around holidays. I wasn’t expecting to feel that way on Easter, but I did. I made Easter baskets the night before and afterwards I wept and wept because I realized I would never make an Easter basket for Lucy.
When we dyed Easter eggs it felt strange to have Liam eggs and Asher eggs and no Lucy eggs. I felt kind of guilty, like we were leaving her out. I made some Lucy eggs and put them next to her big brothers’ eggs.
Is Lucy really missing out on Easter? What about all the sweet babies that have been lost. Do they miss out on all the holidays we celebrate here on Earth? I think it’s the exact opposite. Imagine what the Easter celebration in heaven looks like! Oh, how exciting it must be to actually celebrate the resurrection WITH Jesus. I’m sure the party our babies have in heaven doesn’t even compare to plastic eggs and Easter bunnies. And imagine the birthday party they have for Jesus every Christmas! I think even a “normal” day in heaven is far more bright and exciting than any earthly holiday we celebrate.
If only we could change our earthly perspective and see the whole truth. I wish we could see our babies that we have lost because if we could see how they are living we would never weep for them again. It’s not the ones in heaven who are suffering, it’s the ones on earth that have a hard path of suffering ahead of them. I think when we cry for our lost babies, God is looking at us, shaking his head with love on his face and he is saying, “Oh sweet children of mine, you are weeping for the wrong ones.”
Luke 18:15-16 Now they were bringing even infants to him that he might touch them. And when the disciples saw it, they rebuked them. But Jesus called them to him, saying, “Let the children come to me, and do not hinder them, for to such belongs the kingdom of God.”
Revelation 21:4 He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.
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 ❤
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 ❤
Today I had my last round of plasmapheresis. I, as well as the doctors, were disappointed with the results. After my first treatment my antibody titer went from 512 to 128 but they tested it again two days later on Wednesday and it was right back up to 512. Again, the doctors tested the antibody titer before treatment today and it was back up to 512. We all knew my body would be able to remake the antibodies that were removed, we just didn’t know how long it would take. I was hoping it would be more like a week or so, but apparently it took less than two days. The doctor was amazed by my immune system. I know how good my immune system is and it terrifies me since that is exactly what killed Lucy. Along with some of the doctors, I wonder if my immune system is so strong because I grew up in Africa and was exposed to different types of diseases and viruses. My sister said when we first found out that I had developed anti-kell antibodies and the baby might be attacked by my immune system, she felt an overwhelming sense of fear. She and I both have notoriously strong immune systems. Once, when she was on a teen mission trip to Ethiopia she noticed that all of the other people on her team were experiencing terrible diarrhea and vomiting after drinking the water. She was the only one who didn’t get it. The leaders told everyone to stop drinking the water without purifying it first. Silly Kristin…she wanted to “lose some weight” so she purposefully drank the water unfiltered. She still never got sick and remained the only one on the team to not fall ill.
There are some good things from this week that I am trying to focus on, though. My titer never rose back up to it’s original 1,024 which is amazing to me. I don’t know why it dropped after years of being the same, but somehow it went down before I even started the treatments. Of course the baby is still in great danger with any titer over 8, so 512 is terrifying, but it’s a little less terrifying than 1,024. It is a step in the right direction. We also found out that our insurance has agreed to pay for the IVIG treatments which will probably equal about $100,000 or more depending on how long we need to do them. We are still working on getting them to pay for the plasmapheresis, which is more like $10,000. We are SO thankful the IVIG is covered since it is the most important treatment for the baby at this time.
The goal of doing the plasmapheresis was to try to lower my antibodies, which only worked for a day or two. The goal of the IVIG is to try to block the antibodies from working. I will have my first IVIG treatment on Monday and then have another treatment on Tuesday. After that, I will be given IVIG treatments weekly by a home care nurse. That’s right, she will come to my home and give me the treatments here. I am SO excited about this since I don’t have to find childcare for the boys or drive two hours for every treatment like I have been doing. IVIG often causes bad migraines and vomiting so I’m hoping I am one of the lucky ones who doesn’t have to deal with these side effects (or they’re at least mild enough so that I can still take care of the boys.)
As I move out of the first trimester soon, I transition into the most dangerous time of the pregnancy. Weeks 12-20 are the most dangerous since the antibodies can attack the baby but (s)he is still too tiny to be able to do much to help. It’s much harder to give a blood transfusion to a teeny tiny baby than a bigger one. Also, if the baby isn’t yet to the age of viability the doctors can’t deliver if something goes wrong. If Lucy had been, say, 30 weeks instead of 19 weeks when she was so anemic they could have just delivered her and saved her from the antibodies. But she wasn’t far enough along so we just watched her heart stop beating, completely helpless. This baby is almost on the same timeline as Lucy. She was due in July and this baby is due August 2nd. This means this baby’s “danger zone” is right around the time of year that Lucy died. Her second heaven birthday is on February 8th so it is a sad and stressful time for us.
Please pray for our precious baby as (s)he tries to survive the coming two months. Please pray that the baby starts kicking early like his/her siblings and that (s)he kicks a lot to reassure me. That would be such a blessing to me. I started feeling Lucy kick at 14 weeks like her brothers, but the kicking slowly tapered off as she became anemic and moved less and less. This seems like a small request, but it would mean SO much to me to feel regular kicks from this little baby. Also, please pray for us on Monday and Tuesday. The IVIG treatments will be done on the labor and delivery floor of UAB hospital- the same place where we watched Lucy die and then had to go through the labor and delivery process. We have not been back there since, almost two years ago. I suffer from PTSD, mostly from watching her heart stop and the labor and delivery experience, so I am already feeling extremely anxious about going back there next week.
Thank you all for reading my updates even though they are mostly boring medical stuff these days, and thank you for praying for us. Your hope for our baby keeps us afloat when we barely feel strong enough to keep hoping ourselves.
Our Nora Juliet is two months old today! Every day I get with her feels surreal. I still can’t believe she is here, in the flesh, healing our hearts and reminding us every day of God’s love and redemption.
Her first pair of real shoes
Nora smiles all the time and has almost doubled her birth weight.
Her blood counts have remained good since her second post birth transfusion a couple of weeks ago, so no anemia for now. We found out about a month ago that Nora has a dairy allergy which was causing her a lot of gas and belly pain. She also had a rash on her face, blood in her diapers and she stopped gaining weight. I cut out all dairy from my diet and now she is doing great! Everything has cleared up and she is such a happy girl. I thought cutting all milk, cheese, butter and bread out of my diet would help me lose some baby weight but so far I haven’t lost a pound. How is that possible? Oh well, these extra few pounds are a sweet reminder of the fact that I was able to get pregnant and carry my baby to term- such a miracle.
Over these past couple of months my mind has often drifted to the people who played a part in getting Nora here. I have wanted to write this post ever since Nora was born, but honestly, I have been overwhelmed by the task. There are so many people who helped us along the way on this long, stressful journey of ours to get Nora here safely. The fact that Nora is ALIVE is nothing short of a miracle. Obviously, God is the only one who can perform a miracle, and we are so thankful that He did for our baby girl. We know, though, that He did not act alone. From the beginning it was clear that God was inviting many other people to help Him perform this miracle, to be a part of something incredible. I just can’t seem to find the right words to express how grateful we are for all of you, and because of this I have postponed this blog post longer than I should have. I don’t think any amount of time would help me find the right words, so I will just do my best.
There is one man that God used the most and without him Nora would not have survived. Dr. Ken Moise is responsible for the life saving treatment she received. Because of him she was able to have the plasmapheresis and IVIG that protected her from my antibodies when she was most vulnerable (10 weeks- 24 weeks gestation.) Dr. Moise knew exactly when Nora needed blood transfusions and performed FIVE intrauterine blood transfusions (with the help of several other doctors) on Nora. It was his idea to have me take phenobarbital at the end of my pregnancy to prepare Nora’s liver for after she was born. The phenobarbital is one of the reasons why she spent less than 24 hours in the NICU and did so well after birth. Dr. Moise was always patient with my anxieties and doubts during my pregnancy and he answered all of my (many) questions without complaint.
After Lucy died I emailed Dr. Moise with questions about my antibodies, about what happened to Lucy and the possibility of future pregnancies. Even though I wasn’t his patient and he had no idea who I was, Dr. Moise emailed me back and even called me after Lucy died to discuss all of my questions. He is the most caring, generous, humble and knowledgable doctor I have ever met. Thank you, Dr. Moise, for giving us our Nora.
There is another doctor who played a major role in Nora being here. After we lost Lucy, every doctor we talked to told us that any other kell positive babies conceived in the future would die in my womb. There was only one man who gave us hope for the future, Dr. John Owen at UAB hospital in Birmingham, AL. After getting Lucy’s autopsy results and my placenta analysis results back a month after Lucy died, he called me and told me not to give up hope. He thought that if we got pregnant with a kell positive baby, she might have a chance at survival. Dr. Owen was the only doctor to ever tell us that we could have a live kell positive baby. He gave us the courage to try again and the hope that kept us going. Without that phone call, I doubt we ever would have tried again naturally, and our Nora would not be here. Dr. Owen also was the maternal fetal medicine specialist who treated Nora and me for the first 17 weeks of my pregnancy here in Alabama. He went out of his comfort zone to try a new, “experimental” treatment (Dr. Moise’s plasmapheresis and IVIG protocol) even though he wasn’t sure if it would work. He also worked very hard to get our insurance to cover all of these expensive treatments.Thank you, Dr. Owen, for giving us hope to try again and for giving Nora a good start.
There were so many other doctors, specialists and nurses who treated me during my pregnancy and Nora afterwards that played a part in saving her life. It was definitely a huge team effort that spanned several different hospitals and states. I am still in awe when I think back to the very beginning of my pregnancy and remember the countless acts of kindness these medical professionals showed me…the nurse who held my hand when I was having my port put in and told me to think about my baby girl, that’s who I was doing it for (before we even knew it was a girl) and the home care nurse, Cristie, who took care of Asher, bought us meals and cleaned my house while she was giving me IVIG treatments, the doctors and nurses in the plasmapheresis clinic who told me they would be praying fervently for my baby, all of the staff at The Fetal Center in Houston, who treated me with so much kindness and empathy and patience, Dr. Adler, Dr. Chwe…I could go on and on. There are too many to name, but I am thankful for all of them.
The Ronald McDonald House in Houston played a major role in getting Nora here, I don’t think we could have done it without them. I moved to Houston on March 3rd and came home on July 23rd and there’s no way we could have afforded a hotel for that amount of time. The RMH truly was our home away from home. The staff was so kind and accommodating. The volunteers were amazing, bringing meals almost every day and creating fun activities for the families. These past few months could have been some of the worst we’ve ever had since our family was often split up and our baby’s life was at risk and I was constantly having appointments and treatments, but because of the RMH it was probably our favorite summer ever. The boys talk about the Ronald McDonald House with nostalgia and they miss the friends they made there. Josh and I miss it too and we will never forget how they cared for our family during a very intense, stressful time.
Our first night at the Ronald McDonald House. Asher was exhausted and crying when we arrived and they gave him a little pack of cars to soothe him. It put him at ease and he cheered right up. Now he asks me on a regular basis when he will get to go back to the RMH.
Our “backyard” while we were at the RMH. The boys loved it.
I also have to thank my amazing mother, who came with me to Houston and lived there with me and Asher most of the time, even though she has a job and a very busy life of her own. I will never forget the sacrifices she made for our little Nora. My sister, my Dad and my best friend, Shelly, all helped take care of Liam while he was in Tuscaloosa without me. There are so many people I want to thank, too many to name here on my blog. If I tried, it would take me weeks to write it all out (and let’s be realistic, Nora doesn’t even give me time to shower these days.) Anyway, to all of the people who played a part in our miracle and who made sacrifices for our family, who prayed for us and encouraged us with your words, who donated money, bought t-shirts or sent sweet gifts, who offered to help and showed us hospitality, thank you, from the bottom of our hearts. I am in awe of the goodness and love we’ve been shown. And wasn’t she worth it all?
Survive is the key term here. When you lose your baby it takes everything you have just to survive. This post is about what has helped me survive the loss of my daughter, Lucy, at 19 weeks pregnant and the loss of our next two babies in early miscarriages. One day, I would love to be able to write a post about finding hope and joy after pregnancy loss, but for now it is about survival. No matter how far along you are, when you lose your baby you lose a piece of yourself. It is a searing pain that changes you forever. If you have suffered a pregnancy loss I am so very sorry. Maybe you can find a bit of strength and encouragement from my experience. If you haven’t lost a baby you probably know someone who has. Also, not to scare you, but there is a chance that you may lose a baby in the future. Many, many pregnancies end in miscarriage or stillbirth. I never EVER imagined I would lose my baby, let alone at almost 20 weeks pregnant. The women in my family have healthy pregnancies and we give birth to big, chunky babies. I had two healthy, normal pregnancies before Lucy. I was completely blindsided when I found out there was a complication with Lucy. I was shocked when I lost my next two pregnancies as well. I never thought it would happen to me, but here I am with three lost babies in eight months. This could help you in the future.
Here are some of the practical things that have helped me survive my stillbirth and my early miscarriages:
Remember that you play a part in your own healing:For a while after Lucy died I kept waiting and waiting for God to heal me, but honestly I just ached. One day my counselor told me that I didn’t just have to wait around doing nothing. God is the only one who can ultimately heal me, but there are things I can do to help the process along. A lot of healing took place when I realized some of the responsibility was mine and there are practical things (mentioned below) I can be doing to help myself heal.
Read something comforting right before bed: Before I go to sleep I read a hopeful/encouraging verse from the Bible. The nights seem the worst and what you read before bed tends to stay in your head throughout the night. I feel safe when I do this.
Get enough sleep: I had my doctor prescribe some Ambien to help me sleep occasionally. I don’t take it every night, but I know if I’m having a horrible day full of anxiety that I can at least take Ambien that night and get a good night of sleep (which helps a lot emotionally.) Sometimes I also use Benadryl, melatonin or a nice big glass of wine to help me sleep.
Find some reminders of your baby: I think it’s good to have special reminders of your baby (even if it was an early miscarriage.) I have the only dress and hat that Lucy ever wore, her blanket and tiny heart shaped pillow, her footprints, her measurements, pictures of her, ultrasound pictures, pregnancy tests, and cards from so many people. I put them in a little box and when I feel like it, I take everything out and cry for her. One day I can show her big brothers these things to remind them of their baby sister. You can find something, even if you have had a very early loss (your pregnancy test, ultrasound picture, something that symbolizes your baby, etc.)
Name your baby: This one is kind of a personal decision, but it’s something that has helped me, so I’m including it. Of course, we already had a name picked out for Lucy when she died, but it also helped me to name our babies that we lost in early miscarriages. They are our children, after all, and we will meet them in heaven one day and I would like to know what to call them. We named our first baby that we lost in an early miscarriage Jude and it felt good to honor our baby and acknowledge his or her life. We are still trying to think of a good name for the baby that we just lost in October.
Meet your baby/Take pictures of your baby: This one is for the women who haven’t had a loss yet. If you have a late miscarriage or stillbirth, I think it is very important to take pictures of your baby. For me it was wonderful to see Lucy in person. I was scared at first, but I had read about other women regretting not seeing their baby when they had the chance. This will be your only chance to see your baby in person on earth. I was so glad I got to meet my baby Lucy in person. If you think it’s too traumatic for you, have someone else take pictures and put them in a safe place. If you ever decide you want to see your baby, you can.
Find a good verse, and keep it with you: I often find a verse that means a lot to me or helps me a lot and write it on a notecard. I keep it in my back pocket throughout the day. When I feel hopeless, I force myself to read it and a lot of times it lifts me out of the pit. I also put the verses up all around my house where I’ll see them throughout the day.
Try to stay off Facebook or limit time there: Facebook is crawling with pregnant bellies and newborn babies (including my own) and Facebook isn’t necessary for life, so why torture yourself? You could also just block the people who are triggers for you from your newsfeed.
Stay away from triggers: A trigger is anything that sends you into that deep, dark place of despair. Some of my triggers are: pregnant women, babies Lucy’s age, little girls, Target (not sure why), etc. I try to stay away from these triggers as much as possible. This is especially helpful right at first when the wound is so fresh.
Find a good counselor: Right after Lucy died I started seeing a counselor every week and now I just see her when I feel like I need some extra support. She has helped me deal with PTSD and it has been very good for me. She has encouraged me so much. There are a lot of support groups that are also helpful (I haven’t joined one because I don’t have time right now, but might in the future)
Take anti-depressant medication if you need it: A lot of women are hesitant to take anti-depressants for some reason. I think medication can be extremely helpful and important after a loss. A lot of women don’t need medication, but some do. I have a history of anxiety and depression/postpartum depression, so after I lost Lucy I started taking Wellbutrin just to be safe. It has helped me avoid feeling suicidal and has kept my head above water. My doctor doubled the dose right before Lucy’s due date (and our early miscarriage) and it helped so much. It’s good to remember that this terrible place you are in is temporary, and the need for medication probably will be too.
Find good books on grieving/pregnancy loss: I read some good books on how to deal with grief. My favorite, by far, is “A Grace Disguised” by Jerry Sittser. He lost his mother, his wife, and his daughter all in one day. It’s an amazing book that gave me a lot of hope. I also loved, “I Will Carry You” by Angie Smith.
Try “Breath Prayers”: Ok, this one might sound silly, but it has helped me in my worst moments when I truly wanted to die because the pain was so suffocating. A lot of times I had to focus all of my energy on literally getting through the moment. These breath prayers help. You pick a piece of scripture or an encouraging thought like “My baby is safe.” As you take a slow, deep breath in you say the first part in your mind “My baby…” Then you slowly let your breath out and finish the thought “…is safe” as you release your breath and relax your body. Repeat it until you feel more in control of your emotions. It’s a bit like meditation and it calms you down and focuses your mind on the truth. Some other ones that I use: “God will…heal me.” “God is…in control.” “I have her…for eternity.”God will…sustain me.” Also, I use some of the personal promises that I feel like God has told me: “I will fill…your heart with joy, I will fill…your belly with a baby.” “I will….redeem it.” And then I finish with: “He who promised…is faithful.”
Know how to answer questions: Try to have a standard reply for certain questions because the grief is so heavy it puts your brain in a fog. When people asked me, “How are you?” I didn’t know what to say because the truth was, I wanted to die, I felt like I was already dead inside, but how do you put that into words? I did NOT want to say, “I’m ok,” because I absolutely was not. I read about another Mom who lost her baby who says, “I’m barely surviving” or “I’m surviving.” I like that response. Another common question that becomes tricky is, “How many kids do you have?” or “Do you have any children?”
Find something to look forward to: I try to find SOMETHING to look forward to and I write it down on the calendar. At first, this was very hard. The only thing I looked forward to was my pre-conception appointment (where the doctors would discuss Lucy’s autopsy results with us and make a plan for future pregnancies.) I wrote it in big letters on the calendar. Some other things I have found to look forward to: trying to conceive, trips out of town, renting movies, exercising by myself without my children, doing fun things with my kids (cooking with them, treasure hunts, museums, picnics…), date nights with Josh.
Find some creative outlet for your grief: Some people paint or knit little hats for babies in the NICU. I write on this blog and it has helped me so much more than I ever imagined. Besides God, this blog has provided the most healing for me. It is an outlet for my thoughts and it is so amazing when I hear that it has encouraged another person in some way. By the way, thank you, so much to all of you who read my blog. You encourage me more than you know. Every comment is read and cherished and I am so thankful for you all.
Listen to good music: For some reason I have a hard time finding praise and worship music that I like, but others who have suffered loss have told me it helped them so much. I finally found these old hymns that have been redone and I love them. I listen to them whenever I can. Even having it play in the background is helpful. It keeps my mind on God and off of my pain.
Be ok with saying no: Don’t ever force yourself to do something you’re not ready for (baby showers, family get togethers, church, etc.) just because other people expect you to. One of the things I regret the most is making myself do things I wasn’t ready for. Give yourself permission to say no.
Get lots of exercise. Get lots of sunshine.
Keep taking your prenatal: I kept taking my prenatal vitamin because a lot of days I just couldn’t eat and that was pretty much the only nutrition I got for the day. Also, your body is trying to replace lots of lost nutrients and you need to be physically healthy to start healing emotionally. I have heard some women say that the prenatal is a trigger for them, so they take a women’s multivitamin instead.
Find a safe person: It’s good to try to find at least one person that you feel safe with and spend time with that person so that you don’t lose all contact with other humans. My friend Shelly is great and she never hurts me with her words. Also, she isn’t pregnant or trying to get pregnant and she has two boys (ages 6 and 9) so she’s not a trigger for me. I know I’m safe with her, so I try to spend time with her every week.
Know when to find help: Since losing Lucy, I have wondered many times how I could go on living (almost every day during those first months.) I think about heaven a lot, because my babies live there. I think it’s normal to want to be with your baby and to want to escape the pain. There is a line or a boundary that you need to be aware of, though, and when you realize you are crossing the line you need to tell someone and get help. If you ever start making plans about how you will end your life, you are crossing the line. Actually, if you ever think killing yourself is even a real option, you are crossing the boundary. I have begged God to let me be free from my pain, but I always respect the fact that it is HIS decision when I get to go home. Be vigilant about what you are thinking and if you feel yourself getting close to the line, call your doctor, tell a friend or family member and don’t allow yourself to be left alone (especially with your children.) I promise, the way you are feeling now is not how you will always feel. There truly is peace and even joy in your future.
Besides the practical things you can do to get through your loss, there are also some helpful thoughts that can strengthen you along your grief journey. Here are the thoughts that have helped me the most:
Accept the fact that you are a different person: It took me a while to realize that my life would never go back to “normal.” I kept waiting for it to get better (which it does) and go back to the way it was before (which it never does.) There was healing and a little bit of closure when I accepted the fact that I am now a different person and this is the beginning of my new life. It doesn’t help at all to compare my new life with my old life.
Expect people to say stupid things: Right after Lucy died my Mom gave me some advice that her brother had given her. He lost his first wife years ago, so he is familiar with grief. He said to expect people to say hurtful, sometimes ridiculous things and to not let the anger and bitterness take over. Most of those people don’t know what they are saying, but it’s easy to let the hurt run deep and stay there. Expect stupid, hurtful comments and try to let them go. My friend Shelly always says, “They’re just a bunch of nincompoops.” That always lightens the mood and helps me let the hurt go. They are just nincompoops who don’t know what they are saying.
Don’t believe the lies: It is so easy to believe lies after you lose a baby. I think the most tragic thing that can ever happen to a person is to lose a child. That means that you are at your absolute weakest right after losing your baby. Realize that some of the things you are believing are lies from Satan, who loves to attack people when they are weak. I found Bible verses that counteract the many different lies that Satan has been telling me since losing Lucy (You are a bad mom, God wanted to hurt you, etc.) I have to read these truths again and again and they encourage me every time. You can find these lies and their corresponding truths here.
It’s not your job to make them understand: Most people will not understand what you are going through unless they have lost a baby themselves. I was so frustrated at first because no one seemed to get it, no matter how well I explained it. My counselor finally told me that it’s not my job to make them understand, it is impossible. I let go of the burden and have accepted the fact that they won’t get it, and that’s fine. I didn’t understand either before I lost Lucy.
Healing will take a long time: Right after Lucy died, one of my doctors told me that the healing process is very long after a stillbirth. He said studies have shown that it takes a year, at the very least, for a woman to emotionally heal from a stillbirth. Most people will expect you to be better after a few weeks or months. You are not weird if you are still grieving months or years after losing your baby. I thought my doctor was exaggerating a bit when he told me it would take at least a year to heal. I expected it to happen sooner. Now I know that for me, it will probably be years before I feel healed from the loss of my daughter. Don’t give your grief a timeline.
I hope some of these things will be helpful to someone who has been through a miscarriage or stillbirth. If you are a baby loss Mom, I would love to hear the things that have helped you survive your miscarriage or stillbirth.
Our Nora Juliet is two months old today! Every day I get with her feels surreal. I still can’t believe she is here, in the flesh, healing our hearts and reminding us every day of God’s love and redemption.
Her first pair of real shoes
Nora smiles all the time and has almost doubled her birth weight.
Her blood counts have remained good since her second post birth transfusion a couple of weeks ago, so no anemia for now. We found out about a month ago that Nora has a dairy allergy which was causing her a lot of gas and belly pain. She also had a rash on her face, blood in her diapers and she stopped gaining weight. I cut out all dairy from my diet and now she is doing great! Everything has cleared up and she is such a happy girl. I thought cutting all milk, cheese, butter and bread out of my diet would help me lose some baby weight but so far I haven’t lost a pound. How is that possible? Oh well, these extra few pounds are a sweet reminder of the fact that I was able to get pregnant and carry my baby to term- such a miracle.
Over these past couple of months my mind has often drifted to the people who played a part in getting Nora here. I have wanted to write this post ever since Nora was born, but honestly, I have been overwhelmed by the task. There are so many people who helped us along the way on this long, stressful journey of ours to get Nora here safely. The fact that Nora is ALIVE is nothing short of a miracle. Obviously, God is the only one who can perform a miracle, and we are so thankful that He did for our baby girl. We know, though, that He did not act alone. From the beginning it was clear that God was inviting many other people to help Him perform this miracle, to be a part of something incredible. I just can’t seem to find the right words to express how grateful we are for all of you, and because of this I have postponed this blog post longer than I should have. I don’t think any amount of time would help me find the right words, so I will just do my best.
There is one man that God used the most and without him Nora would not have survived. Dr. Ken Moise is responsible for the life saving treatment she received. Because of him she was able to have the plasmapheresis and IVIG that protected her from my antibodies when she was most vulnerable (10 weeks- 24 weeks gestation.) Dr. Moise knew exactly when Nora needed blood transfusions and performed FIVE intrauterine blood transfusions (with the help of several other doctors) on Nora. It was his idea to have me take phenobarbital at the end of my pregnancy to prepare Nora’s liver for after she was born. The phenobarbital is one of the reasons why she spent less than 24 hours in the NICU and did so well after birth. Dr. Moise was always patient with my anxieties and doubts during my pregnancy and he answered all of my (many) questions without complaint.
After Lucy died I emailed Dr. Moise with questions about my antibodies, about what happened to Lucy and the possibility of future pregnancies. Even though I wasn’t his patient and he had no idea who I was, Dr. Moise emailed me back and even called me after Lucy died to discuss all of my questions. He is the most caring, generous, humble and knowledgable doctor I have ever met. Thank you, Dr. Moise, for giving us our Nora.
There is another doctor who played a major role in Nora being here. After we lost Lucy, every doctor we talked to told us that any other kell positive babies conceived in the future would die in my womb. There was only one man who gave us hope for the future, Dr. John Owen at UAB hospital in Birmingham, AL. After getting Lucy’s autopsy results and my placenta analysis results back a month after Lucy died, he called me and told me not to give up hope. He thought that if we got pregnant with a kell positive baby, she might have a chance at survival. Dr. Owen was the only doctor to ever tell us that we could have a live kell positive baby. He gave us the courage to try again and the hope that kept us going. Without that phone call, I doubt we ever would have tried again naturally, and our Nora would not be here. Dr. Owen also was the maternal fetal medicine specialist who treated Nora and me for the first 17 weeks of my pregnancy here in Alabama. He went out of his comfort zone to try a new, “experimental” treatment (Dr. Moise’s plasmapheresis and IVIG protocol) even though he wasn’t sure if it would work. He also worked very hard to get our insurance to cover all of these expensive treatments.Thank you, Dr. Owen, for giving us hope to try again and for giving Nora a good start.
There were so many other doctors, specialists and nurses who treated me during my pregnancy and Nora afterwards that played a part in saving her life. It was definitely a huge team effort that spanned several different hospitals and states. I am still in awe when I think back to the very beginning of my pregnancy and remember the countless acts of kindness these medical professionals showed me…the nurse who held my hand when I was having my port put in and told me to think about my baby girl, that’s who I was doing it for (before we even knew it was a girl) and the home care nurse, Cristie, who took care of Asher, bought us meals and cleaned my house while she was giving me IVIG treatments, the doctors and nurses in the plasmapheresis clinic who told me they would be praying fervently for my baby, all of the staff at The Fetal Center in Houston, who treated me with so much kindness and empathy and patience, Dr. Adler, Dr. Chwe…I could go on and on. There are too many to name, but I am thankful for all of them.
The Ronald McDonald House in Houston played a major role in getting Nora here, I don’t think we could have done it without them. I moved to Houston on March 3rd and came home on July 23rd and there’s no way we could have afforded a hotel for that amount of time. The RMH truly was our home away from home. The staff was so kind and accommodating. The volunteers were amazing, bringing meals almost every day and creating fun activities for the families. These past few months could have been some of the worst we’ve ever had since our family was often split up and our baby’s life was at risk and I was constantly having appointments and treatments, but because of the RMH it was probably our favorite summer ever. The boys talk about the Ronald McDonald House with nostalgia and they miss the friends they made there. Josh and I miss it too and we will never forget how they cared for our family during a very intense, stressful time.
Our first night at the Ronald McDonald House. Asher was exhausted and crying when we arrived and they gave him a little pack of cars to soothe him. It put him at ease and he cheered right up. Now he asks me on a regular basis when he will get to go back to the RMH.
Our “backyard” while we were at the RMH. The boys loved it.
I also have to thank my amazing mother, who came with me to Houston and lived there with me and Asher most of the time, even though she has a job and a very busy life of her own. I will never forget the sacrifices she made for our little Nora. My sister, my Dad and my best friend, Shelly, all helped take care of Liam while he was in Tuscaloosa without me. There are so many people I want to thank, too many to name here on my blog. If I tried, it would take me weeks to write it all out (and let’s be realistic, Nora doesn’t even give me time to shower these days.) Anyway, to all of the people who played a part in our miracle and who made sacrifices for our family, who prayed for us and encouraged us with your words, who donated money, bought t-shirts or sent sweet gifts, who offered to help and showed us hospitality, thank you, from the bottom of our hearts. I am in awe of the goodness and love we’ve been shown. And wasn’t she worth it all?
Our Nora Juliet is two months old today! Every day I get with her feels surreal. I still can’t believe she is here, in the flesh, healing our hearts and reminding us every day of God’s love and redemption.
Her first pair of real shoes
Nora smiles all the time and has almost doubled her birth weight.
Her blood counts have remained good since her second post birth transfusion a couple of weeks ago, so no anemia for now. We found out about a month ago that Nora has a dairy allergy which was causing her a lot of gas and belly pain. She also had a rash on her face, blood in her diapers and she stopped gaining weight. I cut out all dairy from my diet and now she is doing great! Everything has cleared up and she is such a happy girl. I thought cutting all milk, cheese, butter and bread out of my diet would help me lose some baby weight but so far I haven’t lost a pound. How is that possible? Oh well, these extra few pounds are a sweet reminder of the fact that I was able to get pregnant and carry my baby to term- such a miracle.
Over these past couple of months my mind has often drifted to the people who played a part in getting Nora here. I have wanted to write this post ever since Nora was born, but honestly, I have been overwhelmed by the task. There are so many people who helped us along the way on this long, stressful journey of ours to get Nora here safely. The fact that Nora is ALIVE is nothing short of a miracle. Obviously, God is the only one who can perform a miracle, and we are so thankful that He did for our baby girl. We know, though, that He did not act alone. From the beginning it was clear that God was inviting many other people to help Him perform this miracle, to be a part of something incredible. I just can’t seem to find the right words to express how grateful we are for all of you, and because of this I have postponed this blog post longer than I should have. I don’t think any amount of time would help me find the right words, so I will just do my best.
There is one man that God used the most and without him Nora would not have survived. Dr. Ken Moise is responsible for the life saving treatment she received. Because of him she was able to have the plasmapheresis and IVIG that protected her from my antibodies when she was most vulnerable (10 weeks- 24 weeks gestation.) Dr. Moise knew exactly when Nora needed blood transfusions and performed FIVE intrauterine blood transfusions (with the help of several other doctors) on Nora. It was his idea to have me take phenobarbital at the end of my pregnancy to prepare Nora’s liver for after she was born. The phenobarbital is one of the reasons why she spent less than 24 hours in the NICU and did so well after birth. Dr. Moise was always patient with my anxieties and doubts during my pregnancy and he answered all of my (many) questions without complaint.
After Lucy died I emailed Dr. Moise with questions about my antibodies, about what happened to Lucy and the possibility of future pregnancies. Even though I wasn’t his patient and he had no idea who I was, Dr. Moise emailed me back and even called me after Lucy died to discuss all of my questions. He is the most caring, generous, humble and knowledgable doctor I have ever met. Thank you, Dr. Moise, for giving us our Nora.
There is another doctor who played a major role in Nora being here. After we lost Lucy, every doctor we talked to told us that any other kell positive babies conceived in the future would die in my womb. There was only one man who gave us hope for the future, Dr. John Owen at UAB hospital in Birmingham, AL. After getting Lucy’s autopsy results and my placenta analysis results back a month after Lucy died, he called me and told me not to give up hope. He thought that if we got pregnant with a kell positive baby, she might have a chance at survival. Dr. Owen was the only doctor to ever tell us that we could have a live kell positive baby. He gave us the courage to try again and the hope that kept us going. Without that phone call, I doubt we ever would have tried again naturally, and our Nora would not be here. Dr. Owen also was the maternal fetal medicine specialist who treated Nora and me for the first 17 weeks of my pregnancy here in Alabama. He went out of his comfort zone to try a new, “experimental” treatment (Dr. Moise’s plasmapheresis and IVIG protocol) even though he wasn’t sure if it would work. He also worked very hard to get our insurance to cover all of these expensive treatments.Thank you, Dr. Owen, for giving us hope to try again and for giving Nora a good start.
There were so many other doctors, specialists and nurses who treated me during my pregnancy and Nora afterwards that played a part in saving her life. It was definitely a huge team effort that spanned several different hospitals and states. I am still in awe when I think back to the very beginning of my pregnancy and remember the countless acts of kindness these medical professionals showed me…the nurse who held my hand when I was having my port put in and told me to think about my baby girl, that’s who I was doing it for (before we even knew it was a girl) and the home care nurse, Cristie, who took care of Asher, bought us meals and cleaned my house while she was giving me IVIG treatments, the doctors and nurses in the plasmapheresis clinic who told me they would be praying fervently for my baby, all of the staff at The Fetal Center in Houston, who treated me with so much kindness and empathy and patience, Dr. Adler, Dr. Chwe…I could go on and on. There are too many to name, but I am thankful for all of them.
The Ronald McDonald House in Houston played a major role in getting Nora here, I don’t think we could have done it without them. I moved to Houston on March 3rd and came home on July 23rd and there’s no way we could have afforded a hotel for that amount of time. The RMH truly was our home away from home. The staff was so kind and accommodating. The volunteers were amazing, bringing meals almost every day and creating fun activities for the families. These past few months could have been some of the worst we’ve ever had since our family was often split up and our baby’s life was at risk and I was constantly having appointments and treatments, but because of the RMH it was probably our favorite summer ever. The boys talk about the Ronald McDonald House with nostalgia and they miss the friends they made there. Josh and I miss it too and we will never forget how they cared for our family during a very intense, stressful time.
Our first night at the Ronald McDonald House. Asher was exhausted and crying when we arrived and they gave him a little pack of cars to soothe him. It put him at ease and he cheered right up. Now he asks me on a regular basis when he will get to go back to the RMH.
Our “backyard” while we were at the RMH. The boys loved it.
I also have to thank my amazing mother, who came with me to Houston and lived there with me and Asher most of the time, even though she has a job and a very busy life of her own. I will never forget the sacrifices she made for our little Nora. My sister, my Dad and my best friend, Shelly, all helped take care of Liam while he was in Tuscaloosa without me. There are so many people I want to thank, too many to name here on my blog. If I tried, it would take me weeks to write it all out (and let’s be realistic, Nora doesn’t even give me time to shower these days.) Anyway, to all of the people who played a part in our miracle and who made sacrifices for our family, who prayed for us and encouraged us with your words, who donated money, bought t-shirts or sent sweet gifts, who offered to help and showed us hospitality, thank you, from the bottom of our hearts. I am in awe of the goodness and love we’ve been shown. And wasn’t she worth it all?
