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