Two Months and Still Fighting

Our baby Callum is two months old today! He is such a sweet boy. His favorite things are cuddling, sleeping in our arms, Mommy’s milk and Daddy’s voice. He really doesn’t like loud noises, lying flat on his back, bright lights and baths. He is smiling now and holding his head up (but still a little wobbly.) His siblings are obsessed with him (and his parents are too馃槈)

Callum is allergic to dairy, soy and wheat/gluten so I’ve cut all of those foods out of my diet so I can continue to breastfeed him. It’s a lot of work but definitely worth it. Callum is still fighting the anti-Kell antibodies that tried to kill him in the womb. We did blood work ten days ago and his hematocrit was 31. Today I was discouraged to find out that his numbers had dropped again. His hematocrit was 25 and hemoglobin was 9. His retic was 2 so we know that his body is trying to produce its own blood but the anti-Kell antibodies that remain in his system are destroying the new blood he makes. It’s hard to know when to transfuse and when to hold off on the transfusion. In utero Callum’s need for blood was being met by the transfusions Dr Trevett gave him. This sent the signal to his body that it didn’t need to keep producing red blood cells, so it stopped. Now we need his body to start making blood again but the only way to send that signal is to let him get anemic. We can’t let him get too anemic or he could suffer permanent damage to certain organs or could even die, but if we don’t let him get anemic enough his body will never get the signal that it is now responsible for producing red blood cells. Anyway, Callum has been looking a little pale and has been fussier than usual. Even though he is definitely anemic we are holding off on the transfusion and retesting his blood on Friday. In the meantime I’m supposed to monitor Callum closely and make sure he isn’t having trouble eating or breathing, and if he is I’m supposed to take him to the ER immediately. Whew, it is a lot. We are so sleep deprived because Callum has severe reflux (common with preemies) and he can’t ever lay flat to sleep. Even when he is slightly reclined he is uncomfortable, so that has been hard. I have a stack of birth announcements and thank you cards that still need to be sent out and my blog post about Cal’s birth story is only partially written. My house is an absolute disaster and my kids have had WAY too much screen time (I even let Nora get addicted to those mind numbing YouTube videos where people open Peppa Pig/Shopkins/Mickey Mouse/Paw Patrol toys and count gum balls.) But Callum’s needs are immediate so here I am on the couch holding him upright for an hour after I feed him and watching to make sure he is breathing ok. Everything else can wait.

Two things that are saving my sanity right now:

My Tula carrier that keeps Callum upright and leaves my hands free to do other fun things like dishes, cooking, laundry, two year old diaper changes, etc.

And our Owlet Smart Sock that monitors Callum’s heart rate and oxygen levels. An alarm will go off if his levels are too low or too high and all the info is sent to our phones so we can check his levels at any time.

This is one is too cute not to share. “Callum Weathersby is wiggling”

We have a lot of peace knowing that his heart rate and oxygen levels are constantly being tracked while he sleeps. We actually had heard about the Owlet sock long before Callum was born and really wanted one for him but couldn’t afford it. One day I came across a foundation called聽Knox Blocks which provides Owlet socks to families who can’t afford to buy them. I submitted a request for one and told them a brief recap of Callum’s story but didn’t really think anything would come of it. One day when Callum was still in the NICU I got an email from them telling me we had been chosen to receive an Owlet sock for Callum! We are so thankful for this gift, especially now while he is anemic. His oxygen levels and heart rate are good indicators of how his body is handling the anemia. I doubt I would sleep at all if it weren’t for this monitoring system. Thank you Knox Blocks, Palmer family and especially, baby Knox馃挋

Please continue to pray for Callum’s blood levels to normalize and for all of this to be over soon. Thank you!

P.S. I fell asleep several times while writing this so I apologize for any mistakes.

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ISO Moms From Europe

I need your help! If you are from the UK, Germany, France, Italy or Spain and have had a pregnancy with HDFN (hemolytic disease of the fetus and newborn/isoimmunization) which included an intrauterine blood transfusion, you are needed for a research study. Your story could possibly help protect babies in the future and prevent other parents from going through what you went through (and you can make a little extra money while doing it.) A research study is being done on a new treatment for HDFN and they need women from Europe who are willing to do an hour long interview about their experience with antibodies during pregnancy. They will pay you $100 for your time. Here is a little more information about it from Ms. Benson-

We invite you to take part in a confidential 60 minute phone interview to discuss your experience with HDFN (Hemolytic Disease of the fetus and Newborn). We offer $100.00 for your time on the phone. We are working on behalf of a pharmaceutical manufacturer who is exploring the development of new treatment options to treat women affected by HDFN. The company is interested in understanding the experiences of mother鈥檚 affected by HDFN in order to help them better understand patient needs so they can work to develop the best treatment possible for this disease of high unmet need.

The central objective for these qualitative interviews is to explore the patient journey for patients with a history of HDFN including:

路 How you received your diagnosis

路 What types of treatments you received

路 What types of treatments your baby received

路 How HFDN has impacted your life

路 Your thoughts on a new product in development to treat HDFN

bioStrategies Group is a consulting firm specializing in helping clients develop and commercialize innovative technologies to better serve patients, physicians and the healthcare system. Our clients include major pharmaceutical, diagnostic and biotechnology companies聽

I did the interview already and it went great. The treatment sounds amazing. If you would like to participate please email me, Bethany Weathersby at bethanysk55@yahoo.com or Julie Benson at benson@biostrategies.com

Transfusion #6

Today is our baby Callum’s due date! It is hard to believe he is almost six weeks old on his due date.


Yesterday, Callum had his sixth blood transfusion (third post birth transfusion.) His hematocrit had held steady at about 29 the past few weeks but this week it suddenly dropped to 23. He wasn’t eating well and was more irritable than usual so his hematologist and I thought it was best to go ahead and transfuse. The doctors and nurses at Children’s of Alabama have been so wonderful, just like they were with Nora a couple years ago. They called IV therapy to insert Callum’s IV since he is so tiny and they hit his vein on the first try. They also had to double check his blood type since it had changed since birth. He was born O- because he was 100% donor blood at birth, but since then he has started making his own blood so yesterday when they tested him again, his blood type was O+. During the blood transfusion I was able to breastfeed Callum (some hospitals don’t allow baby to eat at all until the transfusion is finished) and I had a comfortable recliner to sit and hold him in the whole time. He handled it really well and slept in my arms or nursed throughout the transfusion.聽I think he was just happy to have a whole day of Mommy’s complete attention for once.

We will do blood work again in about two weeks to see how Callum is doing. They tested Callum’s blood yesterday to see if he still had some of my antibodies circulating in his system and he does, which means the new kell positive blood he is making now will be attacked by my antibodies. Hopefully soon he will be antibody free and he will be making all of his own blood with no further need for transfusions (like Nora.) Ok, I can barely keep my eyes open so I’m off to bed!

His Name

Several people have asked us how we came up with the name Callum and others have asked why he has two middle names. Josh and I really struggled to come up with Callum’s name since we had already named seven babies before him (Liam Joshua, Asher Caleb, Lucy Dair, Jude, Pax, Scarlet Mae and Nora Juliet.) We are thankful that we found the perfect name for him and we won’t be naming any more babies after this!

Callum is pronounced “Cal” like in California and “um” like in umbrella. We have been surprised to hear lots of variations on the pronunciation (I guess since most people haven’t heard the name much.) We’ve heard “Caylum” and “Collum” a lot. The name Callum is Scottish, and it means “Peace/Dove.” God truly has brought us so much peace through this boy and He blessed me with a supernatural peace throughout my stressful pregnancy. Even while being wheeled into the operating room for a completely unexpected c-section all by myself with a premature baby who was showing signs of distress, I felt overcome by peace and excitement. I pray that in this world of suffering and chaos, Callum will know the deep, resounding peace of Jesus. I pray that God uses Callum’s life to bring peace and comfort to others.

Callum’s middle name, Joseph, means “God has added” which is so perfect. We never thought we would have any more babies after Lucy died, then we were blessed with Nora and even though we wanted more than three kids, we thought we had to stop after having our rainbow baby. God has added yet another beautiful little person to our family and we are amazed at His goodness to us. God has added, He hasn’t replaced Lucy or taken away our grief, but He has added joy, peace and fulfillment to all of our loss through this sweet boy. Joseph is also Dr. Moise’s middle name and we know that Callum wouldn’t be here if it weren’t for Dr. Moise. Dr. Moise pioneered the use of plasmapheresis and IVIG for women with extreme alloimmunization during pregnancy (like me.) Callum would not have survived without plasmapheresis and IVIG treatments that kept him alive while he grew big enough for intrauterine blood transfusions. Dr. Moise also helped train Dr. Trevett and is part of the reason why Dr. Trevett is such an amazing physician. Dr. Moise collaborated with Dr. Trevett (all the way from Houston) for my care during my pregnancy with Callum and we are so grateful for his help.

Callum’s other middle name, Thomas, is after Dr. Thomas Trevett, who worked so hard to get Callum here alive.

It is rare to find a physician who is not only skilled at what he does but is also humble, generous and compassionate like Dr. Trevett. He always treated me with kindness and respect, even when I questioned him or when my anxiety bordered on controlling. Dr. Trevett was so cautious with our son’s life. He protected Callum when he was in his most vulnerable and helpless state, and for that we will forever be grateful. I would love for Callum to grow up to be a great man like Dr. Trevett.

A few people have mentioned to us that Dr. Moise and Dr. Trevett probably feel honored to have a baby named after them, but really we are the ones who feel honored to have these men in our lives. We feel honored that Dr. Trevett and Dr. Moise played such an important part in the life of our son and Callum gets to grow up admiring them.

So, that is how our Callum Joseph Thomas was named and he has a lot to live up to and we have so much to be thankful for.

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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.

 

Still in the NICU

Well, Callum definitely won’t be going home this weekend. He has had a few setbacks so I’m trying to readjust my timeline and my expectations on when we can bring home our baby. His hematocrit dropped to 25, which isn’t too bad (they usually transfuse between 22-24) but he wasn’t feeding well, he was having some oxygen desats and his retic was still super low (meaning he isn’t making his own blood yet) so they decided to go ahead and do the blood transfusion. They put an IV in his foot which made me so sad because it looked聽really painful. Since it took a while for the blood to be available I went back to the RMH to sleep and when I came back in the morning he had an IV in his hand because the foot IV didn’t work. He had just finished having his blood transfusion when I got there and his skin looked so pink and healthy.

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He was awake and hungry so I breastfed him and he took a whole feeding without falling asleep, which is awesome! A few minutes later I heard him filling up his diaper so I decided to change him. When I opened up his diaper there was quite a bit of blood mixed in with the poop. The doctor came to look at it and she said he could either have a dairy allergy or he could have something called Transfusion Related Gut Injury (TRAGI) which can sometimes happen in micro-preemies who have blood transfusions. He’s definitely not a micro-preemie so we are hoping it is just a dairy allergy. The timing, though, suggests that it might have something to do with the blood transfusion. The doctor is x-raying his abdomen right now to try to get answers and I’m cutting all dairy out of my diet just in case. They are putting him on gut rest until they can figure out what is going on. Callum’s ferritin (iron) levels are really high on top of all of this. Before the blood transfusion his ferritin level was 1,216 and the normal range is 25-250. Since he was given adult donor blood which has high levels of iron in it, his levels are probably much higher now. They are running liver function tests to see if his liver is being affected by all of this extra iron in his body.

It is hard not knowing how much longer we have to live here in Atlanta separated from our family and our normal life and our sweet baby Callum. And can I just say how absolutely unnatural and weird it is to have a NICU baby in the first place? It’s unnatural to give birth and then never touch or hold or even see the baby for hours after that. It feels wrong for my baby to go through painful procedures without me there with him to comfort him. I show up and he’s suddenly got an IV or he’s had a vaccination, etc. and I wasn’t there to hold him when he cried. It’s completely unnatural to ask a stranger if I can please hold my baby or change his diaper or feed him. I’m his mother. I should be the one giving permission to others if they want to handle my baby. Nora still hasn’t even met Callum and Josh has seen him for maybe a couple hours in the past two weeks. All of this feels off but thank goodness it is temporary. Part of me feels incredibly privileged to even have a baby in the NICU. The one and only dream I ever had of Lucy after she died was of her in the NICU. I was going to visit her and I walked into the hospital, up the elevator to the next floor and down a long hallway to my baby Lucy’s crib. She was so sweet with chubby cheeks and brown hair and oh, I loved her so much. I was so happy to be with her in that sunny little room. Then I woke up to my nightmare…swollen, milk filled breasts and empty arms and a permanently mutilated heart. I was gutted. I begged God not to ever, ever let me dream about her again because I couldn’t stand waking up to my life. I will just wait until heaven. Thankfully He heard my pleas and hasn’t ever given me a dream about Lucy again. It would be too painful. But after I had聽that dream I struggled any time I heard a NICU mom complain about her living baby who was still in the NICU. I envied her. Now I get to be one of those moms with a living baby in the NICU and I am so, so grateful (and yes, I still complain about the hard stuff.) Even though it is inconvenient, it is stressful, it is exhausting and it feels unnatural, I know we are very blessed to be in this situation. Do you know what is truly unnatural? A mama saying goodbye to her baby for good. A聽mama living the rest of her life without her child.

So, yes, it is hard and we are exhausted聽but we are so thankful.

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Please continue to pray for our baby Callum to get over whatever is hurting his belly, to get better at his feedings and for his blood levels to normalize. We appreciate all of you so much!

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聽I have to remind them that this isn’t typical preemie jaundice or normal聽iron deficiency聽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聽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聽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聽Callum since siblings age聽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聽pictures of our baby Callum from the past week: