Category Archives: Liam&Asher

Hard Conversations

Posted on by
Reply

Our little rainbow baby, Nora, is now almost three and a half years old. She is in that shifty space between baby and kid where one minute she is using words like “consequence” and “incredible” in complex sentences and the next minute she is shouting for Mommy to come wipe her butt after a good poo. It’s amazing to watch her grow and transform into the person she will be. She is so different from her brothers; another species entirely. At her age they were reading independently and constantly trying to run over the edges of tall things. The boys would spend hours every day constructing train tracks and creating deadly train crashes along the way. Nora doesn’t care about reading because she can just make up the story herself if there isn’t an adult around to read it to her. She spends most of her day thinking about princesses, making up dances and songs, and caring for her baby dolls. She loves being in charge, taking care of people’s needs and feeling romantic.

IMG_6593

Parenting a three year old is both fun and exhausting because your child can now verbalize her thoughts about the world which means there is an endless stream of words and questions flowing out of her mouth. We laugh every day at something hilarious and ridiculous that Nora has said and we die from the cuteness too. She recently started telling us that she loves us and she uses it to her advantage when she doesn’t like our decision about something. “Nora, I have to go to work now.” says her Daddy. “But Daddy, you can’t go to work because I love you.” “Nora, it’s time to take a nap.” “But, I love you so much. I can’t take a nap.”

Nora is also very aware that she has a sister named Lucy who isn’t here with us but is still a very important part of our family. For Liam and Asher it comes naturally to include Lucy in most things, which still amazes me and feels like balm to my heart. When counting how many girls vs. boys in the family, Lucy is always counted. For projects at school they include Lucy in their family description most of the time. At Christmas we always hang Lucy’s golden stocking right there where it should be between Asher and Nora’s stockings. And our family ornaments always include Lucy’s name. But this Christmas Nora asked a lot of new questions that were painful and difficult to answer. “But how is Lucy going to open her stocking on Christmas if it is here? Will she be here in our house on Christmas? I want her to have her stocking. Can we give it to her?” And none of my explanations felt adequate. Recently, Nora noticed a little drawing taped on the wall in her room. It has been there ever since she was a newborn. Soon after we brought her home from Houston, Asher drew a special family picture for Nora and insisted we tape it on her wall for her to look at.

It includes Daddy, Mommy, Liam and Asher holding his baby Nora. Up in the sky, is Lucy, looking out of the window of her mansion in heaven, smiling. It’s beautiful and heartbreaking. Lucy is included as a natural part of our family but the separation is clearly illustrated. All of us down here together. Lucy up there in heaven. So Nora asked about the picture on the wall and I pointed everyone out and explained it to her and she loved it. But of course, she had lots of hard questions.

Nora notices more and more how the big brothers play together so effortlessly without her in the scenario. I mean, it only makes sense that she would not want to be part of their conversations about Fortnite or the imaginary Civil War battle they are meticulously planning out, casualties and all. But she can’t understand why they don’t want to play Barbie princesses with her or act out the Cinderella ball scene over and over again. In those moments I ache so deeply for Nora to have her five year old sister here with her. I can see the hours of fun they would have playing together every day, an easy friendship built into the family. My whole childhood was a never ending play date with my sister Kristin, who is 22 months younger than me. We didn’t even call each other by name. We called each other “friend” because we somehow knew that being friends was extra special. A person doesn’t have a choice about who her sister is, but she does get to choose who her friends are. And Kristin and I wanted everyone to know that we had chosen to be friends. We weren’t just sisters. Nora would LOVE to have a five year old sister friend, even for just one day. How many days of joy and friendship are missed? Years of friendship gone. A lifetime with her sister gone. And it’s hard for me not to let the bitterness take over as I think about the doctors at UAB with their careless mistakes and I want to ask them, “Do you know how many years of friendship have been lost because of your pride? Nora’s only sister, dead, because you couldn’t take ten minutes out of your busy day to check Lucy for anemia when I begged you to.” I forgive the doctors at UAB multiple times a week, sometimes multiple times a day, and I ask God to give me compassion for them. Thank God for the power He gives me to forgive and to love the people who are hardest to love. Without Him I would be drowning in my bitterness.

This past week Nora randomly said to me, “Mommy, I really miss Lucy and I really want her to come here.” It stopped me in my tracks. “I know, I miss her too and I really wish she could be here too.” I said. “But I want her to be here in my house and play with me. And I miss Lucy and you miss Lucy but Callum doesn’t miss her and Asher doesn’t miss her and Liam doesn’t miss her and Daddy doesn’t miss her like we do.” she said. I knew what she was trying to express, that the boys don’t miss Lucy like we do because they have each other. I told her that the boys do miss Lucy as much as we do, except for maybe Callum because he doesn’t know about her yet. “Why doesn’t Callum know about her?” she asked. “Well, he’s too little to understand and it’s hard to explain it to him, but when he gets older he will know who Lucy is.” “Will she come here tomorrow? To our house? Or maybe the next day?” Nora asks hopefully, and my heart sinks. This is the worst. “No, she’s not coming here.” “But maybe she can come later? To our house? And she can stay at our house.” Nora pushes. “I’m sorry baby, but she can’t come to our house because she is in heaven. But we can see her when we go to heaven.” I say, trying to steady my voice. “Oh!” she says, “so how do we go there? Where do we go through? Where’s the door?” “Well, we can’t go there until after we die.” I say slowly. Nora instantly looks horrified. “I don’t want to die!” Oh, now we are spiraling into uncharted territory. I don’t know what to say to my sweet little three year about the horrors of this world we live in. But I have to tell the truth so I say, “Everyone is going to die one day, but if you love God, after you die you can live in heaven forever. And it is going to be so wonderful.” “But I don’t want to die.” she repeats, looking up at me with her giant worried eyes. “I know, and you don’t have to worry about that at all right now.” I say, not exactly sure how to reassure her. “Will Lucy show me her toys when I get to heaven?” she asks and I feel relieved that we are now onto toys as opposed to inescapable death. Finally she lets me change the subject but I am shaken, and the rest of the day I feel desperately sad.

A couple days later as I was getting Nora ready for preschool she nonchalantly asked me, “When am I going to die?” and here we go again. Even though Nora’s questions are heartbreaking for me and difficult to answer, they remind me of how thankful I am that I do have the answers, even if they might be too complex for Nora to understand at the moment.

People die and kids grow up and everything changes but God remains the same. He never changes. He is constant and trustworthy and His love for us never changes. He is our anchor. He even conquered death so really, for those who know God, death is only moving from this place to our real home. Lucy is home and I wonder if she asks God, “Can Nora come to our house and stay? Will she come here tomorrow? To our house? Or maybe the next day?” And He says that the wait will feel like the blink of an eye and before Lucy knows it her family will be home forever. Together. And the most beautiful, comforting thing is that God does not leave us here to flounder in grief while we wait. He is here with us, filling in the gaps where we ache, where dreams are unfulfilled and people are missing. God can be our fulfillment, our strength, our peace, our joy. So maybe Nora has to wait until heaven to have a sister, but she can have other meaningful relationships here and she can have peace, joy and fulfillment through the God who never leaves or changes.

Zephaniah 3:17 The Lord your God is in your midst, a mighty one who will save; He will rejoice over you with gladness; He will quiet you by His love; He will exult over you with loud singing.

Romans 8:38-39 For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

Deuteronomy 33:27 The eternal God is your refuge, and underneath are the everlasting arms.

Advertisement

Life Lately

Posted on by
Reply

It has been a while since I’ve updated the blog! Usually I am faced with the choice to either neglect the blog post I want to write, or neglect my kids and of course, my kids will always win in that situation. But I do desperately want to keep blogging. I still have so much to say. Part of me is super frustrated that I don’t have time to write lately but another part of me loves the fact that I’m so busy taking care of my babies that I don’t have time for anything else. I’ve also been working more (teaching English to German kids) so that leaves me with even less free time to write, but I am loving my job so much! Hopefully as Callum gets older and more independent and when Nora starts preschool in the fall I can have more time to write.

I feel like the last couple of posts have been kind of heavy so I would like to just do a normal life update. Callum is six months, almost seven months old already! He is such a sweet baby and is always super happy if he isn’t having reflux/tummy problems. His reflux and food intolerances have dominated our lives for the past several months. After a lot of trial and error and sleepless nights we now know that he reacts to dairy, soy, gluten, beef, tomatoes, peppers, oats and mint. I have cut all of those things out of my diet (Callum is breastfed) and he is now so much happier. He has an appointment with a pediatric allergist this coming week to do some tests and figure out exactly what he can and can’t eat, now that we are introducing solids. We also finally found the right medication for his acid reflux (Nexium) and it is helping a lot. Before we made those changes Callum would scream in pain and have very painful reflux. He spit up constantly and could never lie flat on his back because the acid would immediately come up his throat and hurt him. Diaper changes were painful because we had to lay him flat on the changing table and he would always end up screaming and choking through the diaper change. He also slept in a Rock and Play for the first six months because it kept his head elevated. Now we are finally able to lay him down in his bed, flat on his back. It is making our lives so much easier! Besides all of that, Callum is very healthy and meeting all of his milestones. He can roll over and is trying to sit on his own but still can’t balance well enough. He laughs and babbles and coos and LOVES eye contact. His eyes follow me around the room and he waits patiently for me to look his way, desperate for eye contact and a smile. His entire face lights up when I look at him or talk to him. I am his world. Almost every time he does that I think of Lucy in heaven. I wonder if she searches for me the way Callum does. I feel certain that when I arrive in heaven her eyes will find me and her face will light up like Callum’s does.

Nora is obsessed with Callum. She is only two but she can change his diaper and get him dressed. She feeds him and wipes his mouth and plays with him. Every morning as soon as she wakes up the first thing she asks me is, “Where’s Callum?” I prayed since she was born that God would give her a sibling friend and He answers those prayers daily in the sweetest way. I do have to be careful though, because Nora is still a two year old and it’s easy for me to forget that sometimes. I can’t really leave her alone with Callum for more than a minute or two. The other day she “gave him a bath” in A&D diaper ointment and then FED him the diaper ointment with a spoon while I was cooking dinner right around the corner. Here he is with shiny ointment hair (the picture doesn’t really do it justice):

img_0920

He can’t have dairy, wheat, soy, etc. but apparently he can handle A&D diaper ointment just fine!

Callum’s brothers also love him and think he is the best baby in the world. They adore him and thank God for him and kiss him constantly. It’s so wonderful to be in this time of healing and recuperation as a family. We were so worn down by all of the loss and the fear of trying again and the desperate need for another baby. The high risk pregnancies were also very stressful for our family. Now we can finally relax. Our house is overflowing with kids and toys and laughter. God is rebuilding our hearts slowly but surely and exchanging beauty for ashes. When I started this blog and named it Losing Lucy and Finding Hope we were in such a dark place that I wondered if I ever would actually find hope. And here we are five years later living in that hope that God promises. I am often overwhelmed with gratitude. Just holding my warm little baby feels like a miracle. I still can’t believe that I get to watch Nora grow up and I get to know all the little details of who she is. I whisper “thank you” to God countless times a day as I go about my tasks. I often have to stop myself from emailing or texting Dr. Moise and Dr. Trevett to thank them AGAIN for what they did for us. Ok, Callum just woke up from his nap so that’s all I get to write for today. Here are a few pictures from the past couple of weeks:

img_0970

img_0767

img_0833

img_0552

img_0840

img_0611

All the Yeses

Posted on by
2

One year ago today Josh and I drove to Atlanta to meet with Dr. Trevett for the first time. We had decided that if Dr. Trevett seemed knowledgeable about Kell and was on board with our treatment plan, then we would try again for our last baby.

We arrived at Georgia Perinatal Consultants one year ago feeling very nervous with a long list of very detailed questions for Dr. Trevett. I honestly thought he would encourage us not to have another baby, like most MFMs did after Lucy and again after Nora. Instead, Dr. Trevett was totally on board with our idea to try for another baby and he graciously answered all of our questions, then asked if we had any more. He was willing to try the new maternal blood test he had never heard of, he was willing to collaborate with Dr. Moise in Houston and he was on board with the treatment plan that we brought to him (which would have been his treatment plan anyway.) We left his office feeling courageous and confident in our decision to try for another baby and complete our family. I am so glad he said yes.

When I look at the newest little love of my life I am amazed to think of all the many people who said yes. Without those yeses he would not be alive today. My very first yes came from God when I had that longing for another baby, for a sibling friend for Nora. God said yes, so I talked to Josh about it. Josh said yes, so we prayed about it together. God patiently said yes again and again with each fearful prayer. Next we asked Liam and Asher if they would be on board with another high risk pregnancy for Mommy. We laid out all of the suffering that might happen, the possibility of losing another baby, the time they would have to spend away from Mommy (but the possibility of another living baby too) and they jumped up and down and said, “Yes!” because they wanted another baby brother or sister so badly. Next, we asked our team of family members and friends who would have to help us get through the pregnancy and they all said yes. Dr. Moise and Dr. Trevett were next and they both said yes.

There were countless other yeses along the way. The many people who prayed for us along the way, the sweet friends (some we had never met face to face!) who let us stay in their homes when I had treatments and appointments in Atlanta. The people who said yes when we needed help with childcare or rides home from school, and the people who said yes to meals, groceries and medical advice. Today I am reminded of all the yeses that led to my sweet baby boy being here in my arms and my heart overflows with gratitude. Thank you to all of you who said yes and went out of your way to help our dream become reality.

img_8698

Another Baby?

Posted on by
5

 

I have started this blog post and then erased it several times. It’s a sensitive subject, growing your family, adding a baby, especially when you already have three and your pregnancies are extremely high risk. After losing a baby it can feel even more delicate and precarious to discuss pregnancy, child birth, number of children, sibling ages, age gaps and growing your family. Unfortunately many people feel compelled to share their opinions about whether other families should add another baby or stop having babies, especially when it comes to high risk pregnancies or large families. I erased and rewrote this blog post so many times because it is hard to find the right words and to express what is on my heart. We want another baby. We know God wants us to try again. Yes, the next baby could be in a lot of danger in my womb. Yes, we are afraid, but also confident that this is what God wants us to do. I don’t want this post to sound like I’m apologizing for my decision to add another baby to our family. I don’t feel like I have to defend my choice to try again. I don’t owe an explanation to anyone regarding my private decisions about family planning and trying to conceive. BUT, on the other hand, I like being open about this journey. I like sharing my story with all of you and my hope is to be the encouragement that another parent needs when they are struggling with their own family planning decisions. I want others to be inspired not to give up on their dreams of a living child, or a big family or a rainbow baby. I also need your prayers and your support and so I invite you to come on this journey with us to hopefully bring our final baby home.

2016 was the first time I’ve gone an entire year without being pregnant once since 2007. After months and months of prayer we have decided that 2017 is the year that we try for earth baby number four, our last baby. We always wanted at least five children but after developing anti-kell antibodies and losing Lucy we thought that dream was shattered. We mourned the loss of our ability to have more babies as deeply as the loss of our daughter. It was such a sad, hopeless time in our lives. But when Nora was born healthy we realized that we had found the right doctor and the right treatments that worked for us. Even though we can never get our Lucy back on this earth, it was an amazing feeling to realize that our dead dreams of growing our family had been resurrected and maybe, just maybe, we COULD have the big family we always wanted. God has reshaped our hearts and changed our dream of five kids to a dream of four kids. We desperately want Nora to have a sibling friend close in age. We want four kids around the table at Thanksgiving dinner when they are all grown up. We would love for Nora to have a sister on earth, but we know that is up to God. We also know that if we don’t try for this one last baby, we will regret it for the rest of our lives. I knew even while I was pregnant with Nora that I would want one more after her if she survived. I knew God was planting a seed in my heart and growing it for a purpose.

Are we afraid? Of course we are scared, but we trust God wholeheartedly and we trust His proddings and nudgings. We trust in His plan for our lives. Does this mean God will give us a healthy, living baby next? I have no idea. It is completely possible for God to call me to try again and then for me to step out in faith, get pregnant and lose the baby. God is God and I am not. I don’t always understand His decisions. But now, more than ever in my life, I trust Him and I feel excited about what He has waiting for me in my future. And who am I to limit God to a certain number of miracles in my life? If He calls me out upon the water, I will follow just like always. And I know the steadfast love of the Lord never ceases. His mercies never come to an end and neither do His miracles.

Job 5:8-11 As for me, I would seek God, and to God would I commit my cause, who does great things and unsearchable, marvelous things without number: He gives rain on the earth and sends waters on the fields; He sets on high those who are lowly, and those who mourn are lifted to safety.

Yes, Lord, lift us to safety. Bring us this one last baby you have placed in our hearts, and place him in our arms. Continue to do unsearchable, marvelous things in our lives.

So, the logistics… we know in some ways it will be harder to go through such a high risk pregnancy again because we now have three children to take care of during all the treatments, appointments, procedures and sickness. We asked the boys a few months ago if they were willing to go through all of that again for another baby in the family…our last little brother or sister. We reminded them that Mommy would be very sick and would be gone to appointments a lot. We reminded them that the baby could die just like Lucy or the baby could live just like Nora, but we don’t know which it will be yet. We told them that Mommy might have to move to Houston for a few months and we would miss each other so much. If they had not been on board with the idea we would have reconsidered because they will have to make sacrifices for this next baby to get here safely, and they will take the risk of having their little hearts shattered again. Josh and I were surprised at how quickly both boys jumped up and down and shouted “Yes!” and “Please have another baby Mommy!” and they were on board with all of it. Asher even begged for me to have two or three more babies and I told him is wasn’t happening, but maybe we could try for one more. Our families are supportive and willing to help us through the pregnancy again, which we are so incredibly thankful for. We couldn’t have made it through our last pregnancy without them. My mom even said she would be willing to move to Houston again if we had to. We have an amazing, supportive church family and sweet friends who are encouraging and helpful too, so we feel as ready as we ever will be.

We met with a new MFM in Atlanta who was actually trained by Dr. Moise. His name is Dr. Thomas Trevett and he is experienced with isoimmunization/alloimmunization. He even won an award for the work he did developing the use of phenobarbital at the end of the pregnancy to help babies with HDN avoid blood transfusions and high bilirubin after birth. I took phenobarbital the last ten days of my pregnancy with Nora and I truly believe it is one of the reasons why she didn’t struggle with bilirubin after she was born and didn’t have to stay in the NICU. Josh and I met with Dr. Trevett at the beginning of January for a preconception appointment to discuss a future pregnancy and to see if he was even willing to take me on. My case is risky and the treatments will be pretty extreme so I would totally understand if an MFM was hesitant to accept me as a patient. He was so great. He understood everything about anti-kell antibodies and he follows Dr Moise’s protocols already. His course of treatment for me was the same one I had decided on already and very similar to what we did to save Nora. Dr. Trevett and I decided to start the treatments a little earlier than we did with Nora. During my pregnancy with Nora we had to struggle with the insurance company for a while to get them to cover the plasmapheresis and IVIG so the treatments were started a week or two later than I would have liked. I started plasmapheresis at 11 weeks and IVIG at 12 weeks in my last pregnancy and Dr Trevett will start them a week or two earlier with my next pregnancy, just to be extra proactive. Dr. Moise and Dr. Trevett have agreed to collaborate together for my care, which I appreciate so much. If the baby needs an early IUT before 20 weeks I will go to Houston to be treated by Dr. Moise, who has more experience doing early IUTs. If the baby doesn’t need an IUT until later in the pregnancy Dr Trevett will do the IUTs. The main reason we are using both doctors is because Atlanta is about a four hour drive from us and Houston is about an eleven hour drive. It would be much easier for me to take care of my three kids if I didn’t have to relocate to Houston for the whole pregnancy. We are still praying that God would give us a kell negative baby so that the baby could be safe from my antibodies. Supposedly, each baby of ours has a 50% chance of being kell positive or kell negative. BUT we know for sure that Asher, Lucy and Nora are all kell positive and Liam might be, so for some reason Josh’s genes seem to dominate. Maybe this will finally be our kell negative baby?

Please join us in praying for our future baby, that (s)he would be kell negative and would be born healthy. Please pray that Nora would get to be a big sister and have a sibling close in age. She would LOVE to have a real baby to take care of and boss around!

img_0180

 

 

Treasuring Up All These Things

Posted on by
3

Luke 2:19 But Mary treasured up all these things and pondered them in her heart.

This verse in Luke is one of my favorite verses in the Bible. Mary had just given birth to her first child and a little while later a group of shepherds came running in, telling her about angels that had just visited them in the fields. The angels were praising Jesus, the same Jesus Mary had just given birth to. What must have been going through her head at that moment?

As 2016 draws to a close I realize that this year has been a year of treasuring up and pondering; like Mary did in her heart when the shepherds came rushing in after Jesus was born. I can only imagine how overwhelmed Mary was after going through labor and delivery, then facing these visitors and their message from God. Sometimes the weight of a moment is too much to take in right then. Sometimes God reveals things to us that we can’t possibly fathom. Sometimes the beauty and wonder of the moment deserves more than the time it’s given. Life is so fleeting. I often wish I could pause time to fully take in the wonder before me, chubby arms and legs, toddler sized proportions in nothing but a diaper, the sweet five year old love ballads to Mommy, the gentle kiss from biggest brother to tiniest sister. Since I can’t stop time I treasure up the moment and soak it in, ponder it in my heart, store it up to take out later and admire. My year has been full of these moments that I want to keep forever. Moments that point back to God and His goodness.

The moment when Mary stopped to treasure up all the things that were happening around her, to ponder the message God was sending her about her child, often reminds me of a day when I did the same but in very different circumstances. February 8th, 2013, the worst day of my life, when my daughter’s heart stopped and my body became a tomb, God made His radical promise to me, “I WILL REDEEM THIS.” I had no energy or clarity of mind to even attempt to grasp what the words meant, so I stored it up for later. Like Mary, who probably could not believe what was happening to her or how the path of her life had suddenly gone a completely different direction than expected, I struggled to take it all in. I was in shock. But God spoke over and over again, an audible voice in my head, “I WILL REDEEM IT.” And each time He spoke I took His promise like a treasure and stored it away to ponder later. Since that day, almost four years ago, I have contemplated the promise many times, turning it over in my mind. God promised to redeem my daughter Lucy’s death and all the loss and pain that came with it. But did He realize how much was lost on that day and all the days since then? That promise of redemption feels too large. It feels impossible. The first year or two after Lucy’s death I reached in and took that promise out in anger, wielding it like a weapon towards God, “You promised me! But you let more tragedy strike instead! Why would you make a promise you could never fulfill?” How could He possibly repay me for my daughter’s death? Over the years God has patiently and carefully crafted my story, moment by moment, using all the loss for good, mending broken places and making the barren wasteland fruitful. And yes, even redeeming parts of my Lucy loss that I thought would never be redeemed on earth.

This year especially I have seen the redemption He promised emerge more than ever. There have been countless moments of glory, beauty and joy that I never thought I would experience again on earth, too many to list here. Many of these moments involved my miracle baby Nora and many of these moments involved other women with high risk pregnancies who were looking for support. I treasure all these things up and praise God for them (especially my baby Nora!)

nora-face

There have been other moments this past year that felt surreal, heavy and empty at the same time because Lucy wasn’t in them:

The play date where all the babies have their preschool siblings along too but three year old Lucy is missing. I’m supposed to choke down my chicken nuggets and smile like everything is normal. I’m the only one who sees the empty space where she should be.

Folding up and putting away her empty stocking on Christmas Eve after the other three have been filled with toys and chocolate.

Telling her brothers that I am sorry, I don’t know what she would look like today and watching their hot tears stream down.

Suddenly realizing in the middle of an English lesson that the little girl I’m teaching is the exact age that Lucy would be today. Her big brown eyes staring up at me, her little laugh. Would Lucy look like that? I don’t even know what her laugh sounds like. I weep for my baby girl the entire drive home.

Over the course of this year God has been teaching me to pause right then and ponder the painful moment, gather it up and give it to God to be redeemed later. I’m learning to trust that He WILL redeem even that terrible moment. Every tear shed, every time the weight of grief feels too heavy to bear, every single thing I miss with Lucy will be redeemed, repaid and restored. God can redeem the deepest loss, even your loss. He can bring beauty from ashes, He can even heal parts of your heart that you thought were broken forever. Some things can never be mended until we get to heaven, but these things that He does redeem on earth are our foreshadowing of the glory and restoration to come.

If you are reading this I have prayed for you. I’ve prayed for your 2017, that God would bring about the most beautiful redemption in your life. I’ve prayed for your healing and for your joy, that God would give you the desires of your heart and would grant you the request of your lips. Be bold and ask Him for the thing you so desperately want. Gather up all of your hurts and hand them over to Him to be redeemed. Those who sow with tears will reap with songs of joy.

Psalm 126  When the Lord restored the fortunes of Zion, we were like those who dreamed. Our mouths were filled with laughter, our tongues with songs of joy. Then it was said among the nations, “The Lord has done great things for them.” The Lord has done great things for us, and we are filled with joy. Restore our fortunes, Lord, like streams in the Negev. Those who sow with tears will reap with songs of joy. Those who go out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with them.

Ripples

Posted on by
3

“Mommy, do you want to die in an explosion so you can go to heaven and see Lucy?” Five year old Asher caught me completely off guard with his question. I wasn’t sure if I wanted to laugh or cry but his face was earnest and he really wanted to know. I told him I didn’t want to die in an explosion but I was excited about being with Lucy one day when I do eventually get to heaven.

Lucy’s death had such an immediate, violent impact on my life but the rippling effects are really hitting the boys now. Liam and Asher are suddenly old enough to comprehend that their little sister is dead and it is heartbreaking to watch them work it out in their minds. The boys are so obsessed with Nora and they love having their baby sister with them. I think they are just now understanding all of the beauty and wonder and love that they are missing without Lucy here. I found this drawing at the bottom of Liam’s backpack the other day.

IMG_1844

I asked him about it and he said it was a bad guy freezing the whole world and all the people died but Lucy (who is the tiny dot in the upper left hand corner) survived. Lucy survived. Our ultimate fantasy scenario. Liam also told me yesterday, “Mommy, I’m sad about a daydream I had where all the babies are trying to be alive, like all the babies in their mom’s bellies, and the ones who don’t win die but only the winner gets to be alive.” The boys have asked us about having another baby and we told them that if I had another baby in my belly we don’t know if that baby would live like Nora or die and go to heaven like Lucy. Asher asked me today how old Lucy is and I told him she is about 2, almost 3 years old. I hesitated, though, because I honestly don’t know how aging works in heaven. Would Lucy grow up, year by year like she would here? Or is she still a newborn waiting for me to get there so I can watch her grow up? Or is she an adult? If she were here on earth she would be turning 3 years old this summer. She would be exactly two years older than Nora, just like Liam is two years older than Asher. The boys always have a combination birthday party in February/March and I know Lucy and Nora would have had a combination birthday party every July. I hate that Nora doesn’t have her big sister here with her. Such a huge loss. The boys are so sad that Lucy isn’t here with them. Asher asked what she looks like now and I had to tell him I wasn’t sure. He looked so sad and asked if she looked just like Nora but had a different name and I told him I didn’t know. He said he wanted to be in an explosion so that he could go see what Lucy looks like. I know some of these thoughts seem morbid, but they are just a peek into five year old and seven year old minds trying to understand death. I hate that death is such a big part of our family and part of the boys’ childhoods.

Asher always includes Lucy in our family. He was very wounded this past Christmas when I didn’t hang a stocking up for Lucy. I promised him that next year we will hang a stocking up for both of his sisters. This is his latest family drawing:

IMG_1776

He is holding Nora and up in the sky is Lucy in her mansion in heaven. She is looking out of the window at us. He insisted that I hang the picture up on the wall above Nora’s crib because he drew it for her. Oh how my heart hurts when I think about telling Nora one day that she has a sister that she will never get to meet until she gets to heaven. Watching the boys deal with Lucy’s death now, three years later, is a reminder that this terrible tragedy that happened to us in 2013 isn’t just over, even though we are continuing to heal. The harsh reality is that the tragedy continues and the ripples continue to bruise us, to cut into our hearts, to reopen old wounds. There are facets of our loss, our life without Lucy, that have yet to impact us. One day when Nora gets older she will wish she had someone to play My Little Ponies with; a sister to tell secrets to and do each others hair and share clothes with.

It is hard to go through life without such a vital part of our family. It is hard for siblings to comprehend their sister being dead. Their sister will never be a part of our family here in the flesh. But goodness, she makes heaven so much sweeter and more tangible. When Asher builds things with Legos he often constructs a scenario here on earth and then one in heaven too. “Mommy, these guys are in their house having a meeting and this guy is in heaven.” Thanks to Lucy, heaven is a very real place to us. She has gifted us with an eternal perspective on life and a joyful anticipation of heaven. I used to dread the end of my life on earth. I feared death. It made me feel anxious and panicky. Now, I look forward to it; not in a suicidal way, but in a very sweet, excited way. I feel peace about dying and I can’t wait to get to heaven. The boys are excited about heaven too and they look forward to meeting their little sister and seeing the mansion that she lives in.

The rippling effect of our loss and heartache will continue to hit us throughout our lives. I know one day when all the 2013 babies start kindergarten I will have an intense ache in my heart…and when they graduate and when I know she should be in college and when I see a beautiful bride her age walk down the aisle and when I meet my grandchildren but none of them are Lucy’s…I will continue to be wounded again and again and so will her Daddy. As her brothers grow and understand more and more about this great gaping hole in our family, they will continue to be bruised as well. BUT these destructive ripples are confined to this earth. They will not follow us to heaven. They are harmless in light of eternity, and that is why I look forward to heaven so much. I just can’t wait to see my first girl and to see all of my children under one roof.

Asher’s Christmas Play

Posted on by
3

Today, like most days, was a mixture of deep gratitude and grief. I think those who have suffered great loss have also been given a new perspective on life and a deeper sense of gratitude.

My four year old, Asher, had his preschool Christmas play today. He was such a cute little wise man…yawning, playing with his crown and desperately searching the crowd for my face.

IMG_9954

The four year olds sang their songs last since they were the oldest kids in the preschool. I had to leave the room when the two year olds went on stage to sing. I sat on a couch in the lobby crying for Lucy while Nora babbled and smiled in my lap. I thought back on the three previous Christmas programs I had attended there. Liam’s first one when I was pregnant with Lucy…I tried not to throw up during his performance, I was so nauseated and anxious about my baby. The next year I almost couldn’t sit through the performance because I was so crushed with grief. The place seemed to be crawling with little babies and pregnant women. I had lost three babies that year and had no hope of bringing home my own living baby ever again. I thought I was going to have a panic attack and it took me days to recover emotionally. Last year I sat watching three year old Asher in his first Christmas play. I was pregnant with Nora…so nauseated and so terrified that I would lose the baby. And then today, there I was crying on the couch for my two year old Lucy and smiling at my miracle baby in my arms. Such a strange mixture of joy, gratitude, grief and loss. I know that I was probably a trigger today for some other hurting woman who had lost a baby and I hate that I made her pain worse. Nora sat perfectly in my arms the whole time, smiling sweetly at everyone. She is medicine to my soul.

When the two year olds were finished, I went back into the sanctuary and watched Asher file onto the stage and my heart overflowed with love. I thought about what a blessing he is to me and I reminded myself that somewhere out there a mommy was missing her four year old just like I was missing Lucy. Asher could have died like Lucy did. He has kell positive blood just like his daddy and sisters, but because I only developed the antibodies after I gave birth to him, he was safe. If I had developed the antibodies before I got pregnant with him, he would have been stillborn. Oh how happy I am that I got to see my four year old perform in his Christmas play today! I love having Asher here on earth with me and I love that I know what color his eyes are and what his voice sounds like. Today was a gift, even though I had to live it without Lucy. I love my life and the BEST part is that it ends with heaven.

 

 

DONE

Posted on by
2

Well, Nora is officially DONE with transfusions and blood checks and has been released from her hematologist! A couple weeks ago she had her blood drawn for the last time at Children’s Hospital and I was so excited that it was the last time I would have to drive all the way to Birmingham and watch them stick her with a needle. Nora wasn’t that excited about it.

IMG_9039

The next day, when I called to find out her numbers, the nurse told me they had only checked her iron and not her hemoglobin, hematocrit or retic. Her iron level is completely irrelevant and has nothing to do with this type of anemia. I was surprised at the rush of emotion when I found out we weren’t really done and that Nora would have to have another blood draw. I broke down in tears, frustrated with the hospital for running the wrong test and frustrated with myself for not making sure they were ordering the right blood tests. I was sad that Nora would not be cleared by Halloween like I was hoping.

This Halloween was the very first holiday that I wasn’t dreading since losing Lucy. It’s a huge milestone in my grief journey. I never thought I could enjoy a holiday again, but this year I was ok with it, even looking forward to it a little. Nora was going to be a ghost and the boys were ninjas.

IMG_9048

On Halloween Nora woke up feeling very irritable and she wouldn’t nurse. She started screaming and WOULD NOT STOP. She sounded like she had a little congestion and a cough but soon started having a little trouble breathing. She was grunting and occasionally gasping for air. Since I didn’t have her latest blood work results I wasn’t sure if she was anemic or not (although I suspected that she wasn’t since she was still pink.) We had to take her to the emergency room. Difficulty breathing can be a sign of severe anemia and we didn’t want to take any chances. The saddest part was when the nurses couldn’t get Nora’s vein because she was so tiny and slightly dehydrated. They tried four times before they finally were able to draw enough blood for the tests. We were so relieved when her counts came back normal. Her hematocrit was 42 and her hemoglobin was 14! She did have bronchiolitis and an ear infection which were causing her all the discomfort, and it was kind of a let down to spend Nora’s first Halloween in the hospital, but it was so exciting to see her numbers looking so good! And she did end up getting cleared for good by Halloween like I had hoped 🙂

We feel so incredibly relieved that all of the medical dangers caused by these horrible antibodies are now behind us. Nora is a “normal” baby now and is producing her own red blood cells with nothing in her blood to destroy them. Not only is Nora done, but we are done trying for our rainbow baby and that desperate desire for a third living child has been satiated (thank you, Jesus!) Our family can relax and we are now trying to focus on recuperating from the past three years. We have had one tragedy after the next and even though it ended in the best way imaginable, this high risk pregnancy with Nora and her birth were so exhausting. We are depleted, financially and emotionally. We are slowly trying to pay off our medical bills and climb out of debt that we fell into during the “adoption.” How I wish there was a way to get all of that money back from Kailee and Peter. We are also trying to give Liam and Asher a lot of attention since they have had to endure so much in their little lives. Lucy, Scarlet and Nora have been our main focus since 2012 and now we are finally able to pour ourselves into our sons. It is so fun. I just finally “set up” their bedroom since I never had time to after we moved in last fall. I made their names out of fun letters and put them on the wall, rearranged the furniture, got rid of Asher’s toddler bed and I’m still working on some really cute bookshelves to go on the wall. Asher was so excited when he saw the small changes I had made that he said, “This is my favorite room I ever had!” It is so nice to be able to just be in my home with my children, with no pressing emergency or giant obstacle to overcome.

Josh and I are finally able to focus on our marriage and work on just enjoying being with each other again. Losing a baby puts so much strain on a marriage, not to mention an adoption gone wrong and a very high risk pregnancy. We love being able to just enjoy normal little things together again (things that seemed frivolous and meaningless in the midst of grief.) We watch Netflix and go for walks and plant vegetables and herbs in our fall/winter garden. We go to church together and are able to plan fun things like camping trips and what to cook for Thanksgiving. Even though we still have a lot of healing to do and our Lucy wound still gapes, I feel like we are finally able to slow down and enjoy life again.

As I go about my day, a phrase often comes to mind, “He brought me out into a broad place.” It comes from Psalm 18:

Psalm 18:19 He brought me out into a broad place; He rescued me, because He delighted in me.

Thank you, Lord, for rescuing me and for rescuing Nora. I know we will probably face more adversity, pain and loss in the future, like everyone does, but I love this place you have brought me into right now. I praise you for the miraculous things you have done in my life and for this time of respite and restoration.

Second Post Birth Transfusion

Posted on by
4

So, last week Nora was on the verge of needing a blood transfusion and the doctor wanted to wait eight days before checking her again.  We ended up calling the hematologist and telling him our concerns about waiting so long. He wasn’t defensive or condescending like some doctors in the past have been when questioned. He answered our questions and when he didn’t know the answer he simply told us he wasn’t sure. We appreciated his honesty and humility so much. He took our concerns seriously and told us we could bring her in any time for a blood check if we felt nervous. This put us more at ease.

The doctor ended up being right, Nora was ok waiting the eight days until her next check up. On Wednesday I took her in for her weekly blood work. Her hemoglobin was eight and her hematocrit was 23, both transfusion level. Her retic was up over two, which was great since she hasn’t had much of a retic at all. The retic shows whether she is making her own red blood cells or not. Since it went up from 0.11 to over two we know that her body is starting to to make blood again. Unfortunately, her bilirubin went up too, which shows us that there is red blood cell destruction happening. Apparently, my antibodies are still circulating in Nora’s blood and killing any kell positive blood that she makes, which is why she needed another transfusion. The doctor decided to just do the transfusion that day so it was a LONG day, but we were relieved that Nora was getting the blood that she needed.

The nurse had to put the IV in her head again since her veins are so tiny and difficult to access. She was such a brave girl and didn’t fuss much at all. Besides when she got her IV, she was a very cheerful baby and all the nurses wanted to hold her and cuddle her. Here she is right after they put her IV in.

IMG_8022

The transfusion went well and Nora seemed perky and pink afterwards. She will continue to be checked weekly by the hematologist. My goal is to have her completely over the antibodies by Christmas. Right now that seems like a long way away but in the grand scheme of things it’s not long at all…a very small price to pay in order to have our baby girl here with us. This past week was exhausting. All of the school year activities have started back and I feel like we are constantly on the go. We took Nora to church for the first time last Sunday and she did great! She was quite overstimulated by the loud music and flashing lights and people all around, but it was so fun to have her there with us.

IMG_8004

Here are a couple more cute pictures from this week. Thank you for all of your prayers and continued support. I’ll try my best to keep you updated!

IMG_8019

IMG_8041

Asher collected some toys and stuffed animals and told me he wanted to have “play time” with Nora in her crib.

IMG_8042

“Say owl, baby Nowa, say owl!”

 

 

 

 

We Have a Date!

Posted on by
7

This week I am 36 weeks pregnant and on Monday we scheduled my induction.

IMG_6890IMG_6900

It’s so exciting to finally have a date to look forward to! I am scheduled to be induced on the morning of Monday, July 20th when I am 38 weeks exactly. Of course, if there are no beds available and they are too full, my induction will be postponed so I’m trying not to put all of my hopes on that specific day. There is a small chance that Nora will decide to come sooner than that, but I highly doubt it. At my 36 week appointment I found out I’m dilated to 3 cm already and my contractions continue throughout each day. There have also been a few other signs of preterm labor but for now we are just waiting it out at the Ronald McDonald House. It is a bit stressful because my parents plan to come a couple days before the induction to watch the boys for us, but we don’t really know what to do if I go into labor before then. It’s about an eleven hour drive so chances are I would have the baby before they even got here if I actually did go into labor (Liam’s labor and delivery was 12 hours start to finish and Asher’s was 6.) My parents are packed and ready in case they need to come with little notice, but I would hate for them to drive all the way here if I never really went into labor. We do have a friend of my mom’s on standby to help with the boys in case of an emergency, which is very kind of her.

Yesterday I started taking a drug called phenobarbital three times a day. Dr. Moise wants me to take it for ten days prior to delivery. It’s commonly used as an anti-seizure medication but when taken during pregnancy it helps develop the baby’s liver. Nora’s liver will play a big part in how well she deals with the anemia and jaundice after she is born. Technically, she will have HDN or “Hemolytic disease of the newborn” which is why she will be in the NICU, even if she is full term with no preemie issues. If I am able to get in ten full days of phenobarbital before she arrives, her NICU stay will be shorter. Emotionally, I am all over the place. I’m torn between desperately wanting Nora OUT of my dangerous womb and wanting her to stay in to get the phenobarbital that she needs. To make matters worse, I have an excess amount of fluid (mild polyhydramnios) which makes it harder for me to feel Nora’s movements. She has been sluggish and lethargic lately and it scares me. I think of all the babies (in “normal” pregnancies) who have been stillborn during the last weeks and days of pregnancy. I know her heart could stop at any moment. The boys kiss my belly CONSTANTLY and tell me how much they love “their baby.” It is the sweetest and most terrifying thing. I can’t imagine how heartbroken they would be if we lost her. All of these fears seem to be culminating right at the end of my pregnancy, which is, ironically, the safest part of my pregnancy probably. Dr. Moise told me today not to worry and that I WILL be driving home to Alabama with Nora ALIVE. I read this simple verse the other day and it was just what I needed.

Psalm 56:3 When I am afraid, I put my trust in you.

Somehow, after all these years, it is still not my first reaction (usually) to trust God when I am afraid. I don’t know why that is…maybe my sin nature or my stubbornness or pride. I am making a conscious effort today and over the next couple of weeks to put my trust in God when I am afraid. I don’t need to put my trust in my ability to count her kicks or in the doctor’s ability to get her here safely (although both of those things are very important.) Ultimately, her life is in God’s hands and I will choose to trust Him. That is what brings me peace and quiets my heart.

I know I have shared this letter before, but I want to share it again. On this day, three years ago I wrote a letter to my daughter. I had such a strong sense that she was coming and I would have a daughter next. We had our two boys and were just beginning to talk about maybe having a third baby. I felt compelled to write this letter to my girl. I’ll share it again because it brings me comfort and I feel like it applies to Lucy as well as Nora.

IMG_7069

                                                                              07-08-12

To My Daughter,

I feel your creation on the horizon. Like the smell of a rainstorm coming- a beautiful rainstorm that’s been prayed for. I see your Maker readying Himself to make you. I can’t wait to meet you. I know you’re coming. I can’t wait to see what God’s going to do. You are wanted so very much. You are coming and I am hopefully waiting with open arms; my sweet, beautiful daughter to be.

Love, Mommy

Psalm 139:16  Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.

I love knowing that all of Nora’s days have already been written down in God’s book and the number of them is completely out of my control. I can’t wait to meet her.

We still need your prayers and are so thankful that you have stuck with us throughout this long pregnancy. Please pray that Nora continues to flourish in my womb and arrives ALIVE and healthy. Please pray that we have childcare whenever my labor starts so that Josh can be there for his daughter’s birth. Our next appointment is on Monday, July 13th. I will keep everybody updated!