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:
He is so beautiful! I’m glad he continues to progress well and I hope they check his levels as you are requesting tomorrow. And that he gets to go home soon! You’re doing a great job friend 😊
ok. here goes. You know I am a RN for over 40 years. Hct of 25 and Hgb of 9 is extremely too low and he needs a transfusion now. And how fast his Hct dropped is a clue he is not ready at this young age of 2 months. When he gets to be 4-5 months then you can do this watch and hope but not now. This is an emergency situation. And, My daughter is your second cousin once removed, and she is a RN, can help you a lot on the diet thing. Our 4 year old grandson, Leo, was born allergic to all dairy, wheat, soy, beef and more. She too, as your are doing, had to remove those things from her diet and she had to breast feed Leo until he was 3. He is still allergic to all this stuff and did almost die 2 years ago because he found a kissy chocolate candy thing and took a bite of it. He had an anaphaletic reaction and thank goodness Mary had an epi pen and gave him the injection. He almost died. Very serious food allergies so get on Mary’s facebook page (Mary Bargin) and talk to her ; private message her. You really need to talk to her. You need to have an epi pen for Calum and have it with him at all times. Never go anywhere without that epi pen. get a prescription for 2 at least. One for home and one for when you guys are out.
Thank you! We have to be careful not to transfuse too soon so that he doesn’t become transfusion dependent. We really want his bone marrow to kick in and start making more red blood cells. I trust his hematologist and I’m watching him closely 😊