Life Lately

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):

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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:

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All the Yeses

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.

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All Clear

Well, we went in for Callum’s seventh blood transfusion on the Friday before Thanksgiving and ended up leaving the hospital without one! When we arrived that morning for the transfusion they inserted his IV and had his blood drawn to check his levels and we were happy to find out that his levels had gone up just a little bit on their own! His hematocrit and hemoglobin the Monday before had been 25.7 and 9.1 and on Friday they were 26.6 and 9.3. It was the first time in his life that he had brought his counts up without a blood transfusion so we were elated.

His hematologist checked his blood for my antibodies and it came back completely negative! I was surprised by how emotional I felt when he told me Callum’s antibody screen was negative. My baby was finally free from my dangerous antibodies for the first time in his life. He can now make his own blood and it won’t ever be destroyed by my antibodies again. It has been a long hard road to get my boy to safety. We did it! They removed his IV and sent us home without a transfusion.

We came back a few days later to check his counts one more time right before Thanksgiving and his numbers had BARELY gone up. His hemoglobin was the same (9.3) but his hematocrit had gone up from 26.6 to 27 so we were cleared to leave the state and visit family in South Carolina for Thanksgiving. We had such a great Thanksgiving with everybody. Callum’s Grandparents got to hold him for the first time and his SC aunts and uncles got to hold him for the first time without monitors and wires attached to him.

Yesterday I drove the hour to Children’s of Alabama for the last time to have Callum’s blood checked by the hematologist. His levels had gone up again on their own! His hematocrit was up from 27 to 28.4 and his hemoglobin was up from 9.3 to 9.6. We were officially released from hematology and we never have to check his counts again!! Thank you God, for this amazing gift.

Driving home from the hospital for the last time with my healthy boy in his car seat was redemptive and beautiful but bittersweet. This is how Lucy’s story should have ended. If she had been given the right monitoring and treatment like Nora and Callum, then I would have driven home one day in 2013 with my healthy baby girl in her car seat and our lives would have been completely different. Our family would be intact, our hearts would not be irreparably broken. Nora would grow up with a sister. Liam and Asher’s childhoods would not be marred by this tragedy. So many shoulds and woulds, and though I rejoiced that we were done, my grief noose tightened just a bit as I drove home with my healthy rainbow boy. But I also think about the other babies who might not be alive if it weren’t for Lucy and this blog. How many other lives would be devastated by tragedy if Lucy had lived? I’m reminded of a song I heard one day while driving to Atlanta for an ultrasound. It’s by Judah and the Lion and the lyrics bring me to tears every time I hear it.

And I’d take it all back, take it all back, take it all back just to have you.

Just typing the words makes me tear up. The words surge all the way down into this deep part of my soul, the part that still desperately wants to save my daughter. I think about the question, “Would I take it all back just to have my baby Lucy?” My mother heart would do anything to have my daughter back, to keep her alive. I would take it all back just to have her. But I also know that I couldn’t possibly make that choice knowing now what her life and her death have meant for other families. I am comforted knowing that God is in control of every little detail of my life and Lucy’s life and I don’t have to make these impossible, hypothetical decisions. But I still feel a deep ache knowing that Lucy’s story could have ended like Callum’s and the treatment that could have saved her was out there all along. Even with such angst in my heart about what happened to Lucy, I am flooded with relief and joy and gratitude knowing that Callum’s story will end differently.

HOME!

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We brought our beautiful healthy boy home from the NICU a few days ago and it has been an amazing, exhausting whirlwind ever since. Callum’s doctor did a couple more x-rays and lots of blood work after his bloody diaper and all of it came back clear so she was able to rule out the transfusion related gut injury/NEC that we had feared. He has a dairy allergy instead so I’ve cut out all dairy from my diet and he’s on a dairy free formula (with occasional breastfeeding) until all of the dairy is out of my system (it usually takes a few weeks.) Then we will transition back to breastfeeding only. After Cal had his second post birth blood transfusion his oxygen was so much better (no more desats) and he basically took all of his feedings by mouth from that point on. It felt unreal when they told me I could take him home. I showed up at the NICU to get him and his tiny little body was completely wire free for the first time since he was born!

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The hospital has a rule that all babies being discharged from the NICU must be wheeled out of the hospital in their mother’s arms, which felt kind of ridiculous since I had been walking back and forth from the Ronald McDonald House to the hospital parking deck to the NICU and back for weeks. It felt so surreal and wonderful though, to be leaving the hospital with my healthy baby boy in my arms.

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We are overcome with gratitude to God for giving us this miracle and completing our family. Callum was His idea in the first place…a redemptive gift that I do not deserve. I get teary when I think back to the beginning of this year when Josh and I were trying to decide if we were brave enough to try for one last baby and God whispered, “Let me bless you.” over and over again. He encouraged us to be courageous and to trust Him. He had this sweet baby boy in mind and I’m so glad we took that leap. All of the fear and the physical pain and exhaustion and inconvenience was so, so worth it. Watching Nora meet her baby brother for the first time was one of the happiest, most beautiful moments of my life. We grieve the loss of her big sister daily. We ache for the friendship that was lost for Nora when Lucy died. She should have a sister two years older than her. It has been so sad to watch Nora play on the sidelines while her brothers play together every day in their own world that she isn’t really a part of. Josh and I prayed so many times for God to give Nora a sibling friend of her own and now he is here! Callum and Nora are almost exactly the same age distance apart as Liam and Asher and Lucy and Nora. Thank you, Lord, for hearing our pleas and for giving Nora her very own sibling friend.

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Seeing the relief on Liam and Asher’s faces when they are with Callum is so incredibly gratifying.

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I’m pretty sure Callum has a different take on things since he is constantly passed around, kissed, patted, hugged and manhandled by his older siblings. I think he longs for his peaceful NICU days of the past.

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Callum had his first follow up appointment with his pediatric hematologist in Birmingham a couple of days ago and it went really well. He literally slept through his blood draw and his numbers looked ok. His hematocrit was 30 and hemoglobin was 10 and retic had gone up to 1. I really liked his hematologist too. I think Cal will need at least one more blood transfusion before his body is making enough blood on its own, but maybe not. He will have weekly blood draws at the hematologist until he is cleared of his HDN. Thank you all for your support and prayers along the way. We don’t know how we could have done it without you all.

 

Update on Callum

Today our baby Callum is two weeks old and he is doing well in the NICU here in Atlanta. My mom and Nora and I have been staying at the Ronald McDonald House half a mile from the hospital and they have been amazing. I really don’t know what we would do without the RMH. Callum lost some weight after he was born but has now surpassed his birth weight. He is really good at breastfeeding and taking a bottle but he often falls asleep before the feeding is finished so he still depends on his feeding tube some for nutrition. Callum’s bilirubin hasn’t been checked in a week and his hematocrit was last checked a couple days ago so I have been pushing for them to recheck those levels soon. A few of his doctors and nurses have been very nonchalant about his HDN (hemolytic disease of the newborn.) Occasionally I have to remind them that this isn’t typical preemie jaundice or normal iron deficiency anemia. It can be a very sneaky and dangerous disorder if not followed closely. I know babies who have died from HDN and many others who have permanent brain damage because their HDN was not treated appropriately after birth. Anyway, I’m hoping that the doctor will recheck Callum’s bilirubin tomorrow and his hematocrit soon. I really wanted them checked today but the doctor didn’t want to for some reason. The doctor feels pretty sure that Callum won’t need another blood transfusion but I think he will need one by the end of the week and probably at least one more in a few weeks. His retic is still basically 0 (I think it was 0.1 the last time they checked) and his hematocrit was 26 a couple days ago. They said they would transfuse when his levels got to 22-24 and since his retic shows us that he isn’t making his own red blood cells yet, we can be fairly certain that he will need a transfusion soon.

We have been working through the checklist we were given of things to complete before Callum can be discharged from the NICU (CPR class, follow up pediatric hematologist appointment scheduled, etc.) The doctors and nurses are hopeful that he might be able to come home by this weekend! Callum will be doing his carseat test tomorrow to see if he can handle sitting in a carseat for an hour and a half without struggling to keep his oxygen up. We are so thankful that he is doing well and getting close to coming home! It will feel so good to have our family all together again. I miss Josh and the boys so much. Nora still hasn’t been able to meet Callum since siblings age three and under are not allowed into the NICU. I cannot wait for her to meet him. She is going to be obsessed with her baby brother.

I am still working on Callum’s birth story so hopefully I can finish that soon! Here are a few pictures of our baby Callum from the past week:

 

 

Callum Joseph Thomas Weathersby

Surprise! Our miracle baby is here. Callum Joseph Thomas was born exactly one week ago at 34 weeks and 4 days via emergency c-section. He weighed 6lbs 6oz and was 18.5 inches long. I went in for my last IUT and ended up having a baby instead! This week has been an absolute blur and I am just now able to sit down at a computer to quickly update everyone. Baby Cal needed some breathing assistance at first but is now breathing on his own and is doing great in the NICU. I just moved into the Ronald McDonald House in Atlanta to be close to Callum until he’s discharged. I will write all about Callum’s birth story in my next blog post but for now, I’ll leave you with a few pictures of our sweet boy. Thank you all for praying for us! We are so thankful that our baby is here alive and well.

My first quick look at Callum before he was whisked away to the NICU

Finally able to get on my feet 12 hours after the c-section and go see Callum in the NICU.

Holding Mommy and Daddy’s fingers

Daddy’s first time holding Cal

My first time holding Callum

Most of the pictures are blurry because we had to keep our phones in a ziplock bag while in the NICU so the pictures were taken through the plastic.

Right after he was moved up to the “growers and feeders” floor of the NICU for less critical babies.

 

 

Nora Turns Two and Baby Brother Keeps Fighting

On July 19th our beautiful Nora Juliet turned two years old! Her birthday will always feel miraculous and holy because it is the day God fulfilled so many promises He made to me when I was at my most broken place. It was the day that I did the “impossible”….I gave birth to a healthy, full term kell positive baby girl. God used her to bring light back into our darkness, to heal gaping wounds, to restore hope, to empower women all over the world not to give up. Nora will always be our reminder that God is indeed good, and He does love us. She is our reminder that God places our deepest desires in our hearts for a reason and we do ourselves an injustice if we ignore them, especially when He is calling us to step out in trust. I know that He has great plans for Nora’s life. Thank you, God, for giving me this daughter I can keep. We love her so much and have loved watching her develop and grow over the past two years. We praise you, for you have done gloriously.

Isaiah 12:5 Sing praises to the Lord, for He has done gloriously; let this be made known in all the earth.

Now, a little bit about Nora (because I still marvel that we get to know her on earth and see her personality develop!) Nora is the darkest of our kids- dark brown eyes, darker skin tone and darker hair. As her hair grows longer and longer it gets curlier and curlier and she now has ringlet curls all over her head. She is super maternal and bossy and sweet. She will boss her brothers, her cousins, adults and animals, and I’m sure her baby brother will get it when he arrives too. She wants to take care of everybody. She is independent and loves to drink out of a normal cup, eat with utensils (ALWAYS) and help me unload the dishwasher. She speaks in full sentences and has an amazing vocabulary. At age two her brothers knew all of their letters and numbers but she only knows A, O, S and X. She’s much more interested in relationships than things like numbers or letters. Nora talks and sings constantly and makes up songs about things she’s thinking about or doing. Her favorite place to be is anywhere with people, especially friends and extended family. I think her favorite person on earth is “Manga” (how she says Grandmama) and they have a very sweet, special bond. I sometimes think this is because “Manga” was the one who came to Houston with me and lived in the Ronald McDonald House with us for months. Nora heard Manga’s voice in utero as much as she heard mine and so I think a special bond was formed. Often, Nora wants to go to Manga instead of me when she has he chance. Nora is our daily delight, making us laugh every few minutes. Seeing her with her Daddy is still one of my greatest joys because I ached for so long to see Josh with his own daughter in his arms. Her brothers adore her and I enjoy having a daughter so much. Thank you, God, for this gift.

Nora with her Manga

First train ride

First trip to the beach

Nora at 22 months, me at 22 weeks pregnant.

Exploring Hurricane Creek

Giving Daddy pats

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Baby boy is still doing well but his anemia continues to worsen gradually. His MCA scan this week (27w 2d) was the highest it’s been, at 1.39. Dr. Trevett really thinks next week will be the week that baby needs his first IUT but I’m not so sure. We tentatively scheduled the IUT for Monday but will rescan this Thursday (tomorrow) to see how baby looks. If he’s getting close to the 1.5 cutoff we will plan to have the IUT on Monday. But if baby’s numbers look about the same we will cancel Monday’s IUT. We still can’t believe we’ve made it this far without a transfusion! Baby looked great on ultrasound and is estimated to weigh 2 lbs 11 oz. Here are a few pictures of him from the past couple of weeks:


And here I am at 27 weeks, 4 days pregnant.

We are still struggling to come up with a name for this miracle boy of ours. Most of the names we like are pretty weird (Liam, Asher, Lucy and Nora were all the most “normal” names on our list at the time.) There are a lot of names that we kind of like, but none that we love. Hopefully we will come up with the perfect name soon. We just started getting things ready at home for our boy since we are feeling more confident that we will actually get to bring him home alive. We live in a small, three bedroom house so it is going to be a tight squeeze but we couldn’t be happier to have to fit our FOUR kids into our cozy little house. I never thought we would be able to have four living children! I will do my best to update the blog after my ultrasound (and four hour drive home) tomorrow. Please pray that baby’s numbers aren’t any higher and he gets another week without a transfusion.