13 Weeks and Counting

This post doesn’t really have much of a theme, just updating how things are going. I think every paragraph ends with a prayer request, sorry! We just need your prayers so much…they keep us afloat. On Monday I had my weekly IVIG treatment done at my house by a home care nurse. She will be coming out to our house every week from now on to give me my treatments. This is SO much easier than driving two hours to the hospital and getting the treatments in the labor and delivery ward. The nurse was SO kind and was here for about nine hours (poor thing!) I was just happy that Asher kept his clothes on all day. His favorite thing to be is naked. I had envisioned myself being productive and doing laundry and such during the treatment, but I was hooked up to an IV and blood pressure monitor the whole time and was basically bed-ridden. It turned out to be a good, forced rest for me. The nurse insisted that I nap and rest while she took care of Asher (Liam was at school) and she handled all of the treatment stuff too. When I woke up she and Asher were doing artwork for Mommy and then she played trains in the floor with him for a LONG time.

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Artwork done by the home care nurse and Asher. Notice Asher’s phonetic spelling of turkey “TRCE” haha 🙂

He absolutely loved her and soaked up all the attention she gave him. I haven’t been able to give the boys much attention lately so he needed it desperately. He actually threw himself on the floor in typical 3 year old fashion and cried when she left. He is counting the days until she returns. This woman was such a blessing to our family. Also, her sister just lost her daughter, Hazel Mae, who was stillborn this month. Will you all pray for Hazel’s parents and big sister? I keep thinking about them all and my heart aches for them. At random times her name, Hazel Mae, (isn’t it a beautiful name?) comes to my mind throughout the day and I tear up and my heart races and it feels like I miss her, even though I never met her or her parents. It still shocks me that other women lose babies, every single day. Let’s all pray peace and healing over this family.

My boys have been mentioning the baby more, which actually breaks my heart because I don’t know if they will ever get to meet him/her. After I told the boys about the baby, Liam’s eyes got big and watery and he said, “Mama, PLEASE don’t let this baby die in your belly. We need a baby, we haven’t had one in our family in one hundred thousand years.” This week he cuddled up to me and rubbed my belly. His face was alight and expectant and he said, “Hey little buddy, you’ll be here soon.” Sometimes Liam will hug me and say, “Mom, I just love you so much because you have a baby in your belly.” Asher asks how much longer until the baby comes out and I have to remind him that we don’t know if we will get to keep the baby. It is heartbreaking. Honestly, I don’t know how to do this. If we only have this baby for half of the pregnancy, I want to celebrate him/her while (s)he is here and savor every moment we get with this little person. But I also want to protect my boys’ hearts and I know the less we talk about the baby, the less they will get attached and maybe it will hurt less if the baby dies. But will I regret holding back if this is our only time with this baby? Oh, how I wish we could just expect this baby to come in the summer and start buying cute outfits and have long, hopeful conversations with Liam and Asher about how wonderful it will be to have a new baby in the house. I can’t even imagine the healing and joy that would take place if God answered their sweet, desperate prayers for their sibling with a YES this time and I got to see them holding their little brother or sister ALIVE in their arms. The thought is so beautiful that it’s painful and I try to push it out of my mind when it comes. It almost seems too good to be true. Will you all pray that my boys get to be big brothers to this baby and hold this baby ALIVE and BREATHING one day? Pray that God protects their little hearts from more pain and loss.

I am now 13 weeks pregnant and the baby looks perfect so far. This week I had my genetic testing done where they do blood work and a special ultrasound to check for down’s syndrome, trisomy 18 and spina bifida. I was surprised how little I have cared about these screenings, although I know they are serious disorders. Right now, I just want my baby to live and the biggest threat by far is the anti-kell antibodies. At the ultrasound they also checked for signs of fetal hydrops, which would show up as extra fluid around baby’s organs. Thankfully there were no signs of hydrops, baby was active and heartbreakingly cute with a strong heartbeat.

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Baby’s cute profile on top and hand wave on the bottom

They also couldn’t tell the gender yet again, saying it could really go either way and it’s too early to tell. Maybe next week! I have had several people ask me if these good reports mean the baby is going to live. Unfortunately they don’t. Lucy’s ultrasounds at this point looked exactly the same- perfect. There were no signs of fetal hydrops or any problems. She had a level 2 ultrasound at 16/17 weeks where they looked carefully at every organ and checked for any signs of distress- there were none. She looked perfectly healthy. The only way we could tell that she was very sick was by doing a special ultrasound called an MCA scan that measures how fast the baby’s blood is flowing. If the blood is flowing too fast, it tells us that the baby is anemic. They waited until almost 18 weeks to do this scan on Lucy (after I INSISTED they try to do it for weeks) and everyone was shocked at how anemic she was. She was dying slowly while we were looking at normal ultrasounds and saying everything looked perfect. So, why aren’t we doing these MCA scans on my baby right now to check for anemia? Most doctors don’t do them or don’t know how to do them until 16-18 weeks. It is hard to get a good reading earlier than 16 weeks, but I have been in contact with several women who’s doctors started them as early as 12, 13 and 14 weeks. I have asked numerous times for my doctors to try the scan before 16 weeks, but they are adamant about not doing it since it’s not their normal protocol. They also have told me that they can’t do anything if the baby is anemic that early, however, there are things that can be done and have been done by other doctors at other hospitals. This is why I will be traveling to Houston, TX if the baby looks anemic early, so that we can try everything possible to save the baby. Of course, to know the baby is sick we will need to do the MCA scan earlier. This is my main prayer request for this weekend: I have an appointment with my doctors on Monday, Feb. 2nd and will be asking them one more time to try the MCA scan at 15 weeks. Will you please pray that they will change their minds and try the ultrasound? If they still say no, I will be traveling to Texas to have the ultrasound done (an 11 hour drive one way.) Will you also pray that the baby is not anemic and the MCA scan looks normal? I do want to add that the regular ultrasounds we are doing every week are still very important and if the baby was SICKER than Lucy was at this gestation, we might see signs of fetal hydrops (caused by severe anemia) such as extra fluid building up around the baby’s organs. We are thrilled each week to see normal ultrasounds with no visible problems.

Thank you again, to everyone who has left a comment, read the blog, prayed for us, thought about us, hoped for us, helped us with childcare (my family especially) and sent us kind gifts. We appreciate every one of you and couldn’t do it without you ❤

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IVIG, 12 Week Ultrasound and Gender Guess!

This week has been busy and full of ups and downs. The ups have outnumbered the downs so we are thankful for that. We’ve actually had a lot of encouraging things happen this week. On Monday and Tuesday I had my first two IVIG (intravenous immunoglobulin) treatments done in the hospital. I was nervous going in because I knew it could cause severe migraines and vomiting. It was also the first time Josh and I had been back to the labor and delivery floor since Lucy died so that was hard. Actually, I was very depressed and hopeless that whole first day. No matter how much I tried to ready myself mentally and emotionally, it couldn’t have prepared me for the shock of walking down that same hall and into a room that looked identical to the one where my world fell apart. It was exactly the same. My nightmares and PTSD flashbacks over the past two years have almost all been from that room. I felt like I was literally walking into a nightmare. The poor, sweet nurse… I said, “This is so horrible!” right when I walked in and then, “Oh my gosh, is that a baby warmer? Please get that out of here!” She knew nothing of the backstory so I tried to quickly explain and apologize. She was so sorry and kind and sympathetic. Josh had to look out the window to see the view of Birmingham to make sure it wasn’t the exact same room. Thankfully it wasn’t, but it was an exact replica. That whole day I just knew my story would end with a stillborn baby. It felt like the SAME scenario all over again and I know a lot of that had to do with the setting. Here I am on day one, don’t I look thrilled?

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The second day we were put in a room that was set up differently and it made such a difference. I felt more hopeful, like we were in a different scenario than the one with Lucy (which we are.) One of the perks of the IVIG was seeing the baby a lot. I got to see the baby five times on an ultrasound this week alone. Baby looked good every time, so cute and active and perfectly healthy. I didn’t have any terrible side effects from the IVIG, at least not right away. Last night as I was typing this  I got a bad migraine and the pain quickly became debilitating. I’ve never experienced a headache like that ever. There’s also not much you can take for a migraine when you’re pregnant. Thankfully Josh came home from work right in time and took care of the boys while I isolated myself in my dark room. Side effects from the IVIG can hit up to three days after the treatment.

Yesterday was my 12 week appointment and ultrasound. The doctors told me that after many phone calls and some personal emails from the doctors and director of UAB hospital, our insurance company has agreed to pay for ALL of my treatments! Thank you, Lord! I really appreciate the doctors working so hard to get my treatments covered. I had to do some (respectful) pushing of my own with the doctors at my appointment since they wanted to monitor the baby every two weeks, but I didn’t feel comfortable with that. I know how quickly a baby can get anemic and develop fetal hydrops and it can definitely happen within the span of two weeks. One of the reasons the doctors gave me for less monitoring was that they wouldn’t be able to do anything for the baby if (s)he gets anemic before 18-20 weeks, so there’s no point. I have been in contact with many other ladies who have the same type of high risk pregnancies. Some of them had babies who became anemic early in the pregnancy and their doctors were able to treat them with IUTs (blood transfusions for the baby) and double treatments of IVIG. The doctor yesterday basically said my team of specialists is already kind of going outside of their comfort zone to do the treatments I requested (which I’m so thankful for) and that they won’t be doing anything further if the baby gets anemic early. If that happened, I would have to travel to Houston, TX to get the treatment I was talking about. They did agree to do weekly ultrasounds from now on, as long as I understood that if the baby starts showing signs of anemia early I will need to travel to Texas for treatment. I agreed and I feel good about the plan and the extra monitoring for my little nugget. Will you guys pray that the baby does NOT get anemic and that we won’t have to make a frantic trip to Texas? I don’t even know how we would afford it, let alone figure out childcare and time off work for Josh. It would be extremely stressful and difficult for our family.

The baby looked great on the ultrasound yesterday, so active with a strong heartbeat. The ultrasound technician checked for signs of fetal hydrops (extra fluid around the organs) and there was none! My amniotic fluid looked great, as did all of baby’s organs. Speaking of baby’s organs, we had two different people make a guess at baby’s gender this week so here they are. The first was an OB at the hospital. She did an ultrasound after an IVIG treatment to check on baby and said if she had to guess she would say it’s a BOY. She definitely thought she saw something there between the legs (and I did too.) Yesterday at the 12 week ultrasound in the office, the ultrasound technician said if she had to guess she would say it’s a GIRL! I said, “What makes you think that?” and she said, “What makes me think that? Well, I’ve been doing this for 25 years, that’s what.” She did warn me that it’s still very early and she could be wrong. She usually doesn’t like to tell parents the gender until 16 weeks. So, we know for sure that our baby is either a BOY or a GIRL. I guess we will just have to wait and see. Also, I realized today that the doctors have a different due date than what I thought, my new due date is August 5th. We previously thought it was August 2nd, but had nothing to date that off of since I wasn’t having periods before I got pregnant (from the “breastfeeding.”)

I also celebrated my birthday this week. We’ve been so focused on the baby and all of the treatments that we kind of forgot about my birthday until it was here. We didn’t have any presents or anything planned but it turned out to be a great day. The weather was warm and sunny and I didn’t have any appointments in Birmingham. It felt so good to just be able to stay home and be a mommy to my boys. I didn’t get sick until 6 pm (usually I’m sick constantly) so I was able to do normal things that I definitely took for granted and haven’t been able to do since before I got pregnant. I did the dishes, the laundry and I was even able to take a walk in our neighborhood with Josh, Asher and our puppy, Atticus. That night I cooked a hot dinner for the first time since the morning (all day) sickness hit. Liam came running over and said, “Yay, Asher look! We get to eat food and it’s hot!” Haha, poor things. Every pregnancy I’ve had has been hard on our family but this one has been extra taxing. Anyway, I had a wonderful birthday and was able to appreciate all of the daily gifts that I am given that normally would have gone unnoticed.

Thank you all for your continued support and prayers. They are working!

Here’s the bump at 12 weeks.

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My Biggest Fear

What is your biggest fear? Losing a family member? Never conceiving? Dying? Divorce?  What if you were told there was a 50% chance that your biggest fear would come true sometime in the next two months?

My biggest fear has always been losing a child. It happened before and now there is a 50/50 chance of it happening again in the next few months. Besides losing Lucy, this pregnancy has been the toughest test of my faith ever. It is a constant battle to stay sane, to be able to get through the day and think about anything besides this baby living or dying. Do I truly believe that God can save this baby? Absolutely. I have never doubted His power. I know He is completely in control and He has the power to give this baby life. That was the hard part about losing Lucy- I knew He could have saved her, but He chose not to. Of course He had the power to keep her heart beating, but He didn’t. He is strong enough to keep this baby’s heart beating, but I don’t know if He is going to. I believe all of my fears boil down to these questions- How can He let my baby die and still be good? How can He love me and still say “NO” when I ask Him to spare my baby’s life? Is He truly trustworthy?

This is where my fears about this baby spring from. I know that God has the right to allow my baby to die and I will still have to trust that He is good. I have to believe that He loves me and my child, whether this baby is born breathing or born still. Most of the time, there is a scenario playing in my mind of us losing the baby or getting the news we fear most or telling the boys that once again, their baby is going to live in heaven and not with us. Every one of these scenarios comes from my fear that God is not actually good and that He doesn’t love me (at least not as much as the women who get to keep their babies.)

Deep down, I know that the truth is, God is the ultimate source of love and goodness. He is true and sovereign and He loves me unconditionally. I struggle to match those truths with my tremendous losses over the past two years, though. All the heartache and the fear of another loss make me doubt His love for me. Sometimes I want proof, NOW, that God is good and that He does love me and my family. When I feel that way I am always reminded that He DID give me proof of His love and goodness. It has already been done. He made the ultimate sacrifice, sending His baby boy to die instead of us. I wonder if that was His greatest fear too, losing a child? It brings tears to my eyes as I type, thinking of all He lost for me, to prove to me that He does love me and He is 100% good. I’m sure it hurts His heart when I doubt His love, especially after what He has sacrificed for me. If Liam and Asher ever doubted my love for them, it would tear right into me. It would be so painful because my love for them is so complete and so consuming that for anyone to doubt it is an absolute insult. That’s how He loves me and that’s how He loves you.

I am learning that I constantly need reassurance of the truth when I am scared and anxious. When I read Bible verses during a panicky moment, it feels like medicine for my heart.

Psalm 32:7 You are a hiding place for me; you preserve me from trouble; you surround me with shouts of deliverance.

Exodus 14:14 The Lord will fight for you, and you have only to be silent.

Nahum 1:7 The Lord is good, a stronghold in the day of trouble; He knows those who take refuge in Him.

Psalm 30:10-12  Hear, Lord, and be merciful to me; Lord, be my help. You turned my wailing into dancing; you removed my sackcloth and clothed me with joy, that my heart may sing your praises and not be silent. Lord my God, I will praise you forever.

Psalm 136:4 Give thanks to Him who alone does mighty miracles. His faithful love endures forever.

Psalm 25:3 Indeed none who wait for you shall be put to shame.

Psalm25:10 All the paths of the Lord are steadfast love and faithfulness for those who keep his covenant and his testimonies.

Psalm 18:28-30 For it is you who light my lamp; the Lord my God  lightens my darkness. For by you I can run against a troop, and by my God I can leap over a wall. This God- His way is perfect, the word of the Lord proves true; He is a shield for all those who take refuge in HIm.

I could go on and on, there are so many good verses that are true and reassuring and empowering. Sometimes I am so discouraged and fearful that all I can pray is “Please, Jesus.” In these instances I am realizing that it is helpful to read short prayers written by other people, or to copy them down in my journal. They give me words to express my deep pain and panic and they are comforting. Here are a few that I’ve been using lately:

“Loving Jesus, you know all the worries that flood my thoughts. I feel helpless to stem their tide. All I can do is ask you for help.”

“Lord, I’m imagining that you are a mother hen, and I’m a chick (Psalm 91:4) I’ve crawled under your wing. Your feathers are all around me. I have nothing to worry about.”

“My Father, I will say- no matter what shadows of circumstance blow across my way- you are my Father of Lights. Coming down from heaven are good and perfect gifts to me… All the promises of your love and goodness are still…Yes! and Amen!” -Amy Carmichael

“My Father, All that has gone cold and lifeless in me…is it just your planned stillness before new life flows? Are the hands I’ve clenched in troubled prayer, like tight leaf-buds, about to spread into open-handed praise because your Spirit comes again? I believe, Father, that the joy of a new season in you is warming me right now.” -Amy Carmichael

“The challenge that lies ahead, Lord, is too big for me. My self-confidence fails. I can’t help but compare how big the challenge is to my meager abilities for confronting it. My faith wavers. But I know that when I admit how weak I truly am, then you have the chance to reveal Your strength. The challenge that lies ahead shrinks when I compare it to the immensity of You. And I finally realize that my perception of the challenges that lie ahead all depends on my perspective. Keep me focused on You and Your power.”

The truth about God remains the same whether we believe it or not, whether our circumstances are ideal or disastrous. He never changes and His love for us is all consuming. My advice for anyone facing their biggest fear (or any fear for that matter) is to bring it to God and release it to Him. Read His truth, over and over again until you’re saturated with it. When you are at a loss for words, try reading through prayers already written. Remember that God has already proven His love for you by sending His Son to die in your place. If you still feel doubtful after all of this, take a leap of faith and trust Him anyway. Your other option is to live in fear and to try to carry all the weight by yourself, and it’s just too much. He is trustworthy and He is good and He loves you with an everlasting love.

Plasmapheresis Done, IVIG Up Next

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.

Plasmapheresis, Round One

Yesterday I had my first round of plasmapheresis to try to lower my antibody level. They basically took out my plasma (the part of my blood that contains the antibodies) and replaced it with super filtered/purified plasma from lots of other people. I used to donate plasma in college to earn some extra money, and then after developing anti-kell antibodies, I have regularly donated plasma in Indianapolis to be used in a red cell antibody study. It was strange to be on the receiving end of the plasma this time. The procedure went well with very few side effects. It felt so amazing to finally be doing something to help keep my baby safe. With Lucy they told me there was nothing we could do except wait and see if she got anemic, then try to treat the anemia with intrauterine blood transfusions. It was a terrible feeling to just wait and do nothing, knowing my own body might be attacking and hurting her. This approach is much more proactive, trying to PREVENT the baby from getting anemic in the first place. I wish this treatment had been offered when I was pregnant with Lucy. I wish they had said yes when I asked them to try this treatment with Lucy.

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Right before the procedure started the doctor drew blood to check my antibody titer (level) and then he also checked it again after the treatment was over. I was actually afraid the treatments wouldn’t even work since my body never seems to cooperate and I am usually the “worst case scenario” when it comes to this kind of thing. My antibody titer has always been 1,024. The whole time I was pregnant with Lucy, during this whole pregnancy and all the time in between when I wasn’t pregnant the antibody titer was 1,024. Well, the doctor texted me last night to let me know my starting titer before the plasmapheresis was 512! And even better- after the treatment it was 128! I couldn’t believe it. I started crying immediately. It truly felt like a miracle. I don’t know what would have made the titer stay the same for years and suddenly decrease. I’m also so pleased that the treatments lowered it from 512 to 128. For the first time during this pregnancy I have felt hopeful about the possibility of actually bringing this baby home ALIVE.

Josh and I were so thrilled but soon after hearing the test results, doubt started creeping back in. With Lucy we had several “miracles” like this where we thought something amazing had happened and she was saved, only to get the worst news after that. I felt so silly looking back at old journal entries and Facebook updates where I had been so hopeful and thanked God for a miracle, then she died. I know the antibodies can come back and even if they didn’t, they could still kill this baby at a level of 128. I am tempted to let go of all the hope, to explain the good test results away and to not give God the glory. I am tempted to say “____________ happened with Lucy, so ____________ will happen with this baby.” We have had such a string of tragedies happen in a very short amount of time, I am realizing that my mind has been reprogrammed to automatically think the worst. It’s easy to let doubt, fear and cynicism creep in and steal my joy and my hope. Satan’s main goal is to feed us lies and to steal, kill and destroy. Well, I am stopping him in his tracks right now and I am not going to let him take this miracle away from us. Yesterday was a victorious day and I am deciding to keep the hope and praise God for what He did. He is faithful, even when I am doubtful and afraid. His mercies are new every morning. Thank you, Lord, for this beautiful gift. I praise you for what you did yesterday and for what you are going to do through this baby in the coming months.

Thank you all for praying for our baby and for constantly encouraging us. Please pray that the treatments continue to bring the antibody titer down and that they STAY down. I have two more rounds of plasmapheresis this week and then IVIG treatments start next week.

Not Quite as Planned

* A quick apology- I’m in pain and tired so I’m not proofreading this, just throwing it out there as fast as I can type it. Sorry for any mistakes.

The past couple of days did not go at all like I had planned them to go in my head. Yesterday was my 10 week check up. I was worried about the baby as usual, wondering if there would be a heartbeat on the ultrasound. The nurse decided she would try to use the doppler to find the heartbeat instead of the ultrasound, even though it’s hard to find one that way at only 10 weeks. Well, she searched and searched and could not find a heartbeat. I really tried not to freak out, but was right on the verge. She acted like it wasn’t a big deal and said they would check with an ultrasound after I met with the MFM (who was supposedly coming in just a couple of minutes.) I really wish she would have checked my chart and seen that I had had a stillbirth and that this was a VERY big deal to me. The appointment with the MFM was frustrating and long, but I could tell that she was doing her best. She realized that they had not actually sent the orders for my plasmapheresis treatments that are supposed to start at 8 am on Monday. After about 3 hours of waiting, she finally told me she got it all figured out and the treatments were approved and scheduled. Even though the wait was long and the fear was right under the surface, I was overwhelmed by an incredible peace. I truly felt like the baby was ok. Sure enough, there (s)he was healthy and kicking on the ultrasound with a heartbeat of 168. Perfect! And so cute too. I love this baby so much.

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So, even though it was a long and somewhat scary appointment, everything ended well because the baby looked healthy. I cried almost the whole hour home, thanking God for this baby’s life and begging Him to let me raise this child on earth.

This morning, I had my permacath placement scheduled for 8 am and thought I would definitely be home by 1:00 or 2:00. Instead, we had a very frustrating turn of events and didn’t get home until 5:30, emotionally and physically exhausted. For some reason I had to wait hours for the procedure to start. Right before I went into the operating room, I got a call from one of the MFMs saying that they just checked with my insurance company to get preauthorization for the plasmapheresis on Monday and the insurance company said it would NOT be covered. What!? I was shocked since I just called and asked them a couple weeks ago and they told me it would be covered. I also thought that the doctors had surely not waited until the day before the procedure to check for preauthorization, but they had. After hours of phone calls before and after my (very painful and quite traumatic) procedure, we basically learned that when I called the insurance company to make sure the treatments were covered, the treatment codes given to me by the hospital were the wrong ones. The insurance is now saying they cannot guarantee that any treatments will be covered. The doctors estimate that these treatments alone will equal at least $100,000. We cannot afford them, but we cannot risk our baby’s life because of money either. How much money is my child’s life worth? How much money would I pay and how many years would I be in debt to have Lucy back here with me ALIVE? There is no price too high. This is also a very time sensitive decision. The baby can start being affected by the antibodies at 11 weeks. I will be 11 weeks in 2 days. The treatments HAVE to start next week in order to give our baby a chance. We will have to fight the insurance company on this, so please pray that they do end up covering the treatments. We have decided to go ahead with the treatments this Monday and keep challenging the insurance if they say it’s not covered.

Even though these past couple of days have been unexpectedly long and stressful, we are so thankful that the baby is healthy and doing well at this point. That was our most urgent prayer request and God answered it with a loud YES. Our second most important request was for the permacath placement to go smoothly with no complications. Besides a lack of pain medication (that they decided was possibly too risky for the baby at the last minute) and some very intense pain during the procedure, it went well and is in place. It’s all bandaged up so you can’t see much of it, but it’s stitched into my neck/chest and ready for treatment on Monday.

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Also, the doctors and nurses in the heart and vascular center today were so incredibly kind and helpful. One nurse saw how distressed I was during the surgery, so she stopped what she was doing and came right next to me and held my hand. “Honey, you just squeeze my hand as hard as you want. You are doing this for that baby girl, just think of your baby. It’s all for her.” She knew I was hoping for a girl and was she was so loving and encouraging. And that poor lady, I squeezed her hand at least as hard as I squeezed Josh’s when I was in labor with my babies. She never complained. She was a bright spot of joy in my dreary day, as were the other doctors and nurses who took care of me. My dreary day was actually full of blessings that I am thankful for. Thank you all for praying for us and checking in on us. I will try to update after the first plasmapheresis treatment on Monday.