I think that pediatric transplant is confusing for people. Never mind a pediatric heart transplant. We’ve all heard of heart transplants and seen Grey’s Anatomy episodes about it but how many people really consider that babies are in need of this?
Here are a few facts about raising a baby that has had a heart transplant:
Disclaimer: this is my experience with my transplant baby- every baby is different and every story is different
- She is full of life and joie de vivre!
- She develops the same as any other baby both physically and mentally – she just has some catching up to do because of being in a hospital bed for so long. Please don’t compare her to your cousins daughter and ask why she is not doing this or not doing that- the answer will always be because she spent 5 months immobile when she should have been playing and developing at home.
- She gets sick really easily. She is on immunosuppressant medication for the rest of her life to keep her own body from fighting off her new heart as a foreign entity. This is why we look crazy with the hand sanitizer and Lysol wipes.
- She gets sick like every other baby but she gets over it! Don’t worry, a cold isn’t likely to be what takes her from us – but it’s still very stressful because it can lead to a more serious illness like pneumonia.
- She takes 6 meds at 4 times throughout the day. She has 2 immunosuppressants, 1 anti-hypertensive, 1 antibiotic, magnesium supplements and vitamin D drops. Her immunosuppressants have to be given at exactly the same time every day- this is not us being anal- it has a direct correlation to rejection of her heart.
- She doesn’t hate meds! It’s just a part of her routine.
- She needs to drink lots of fluid– I know that for most babies it’s okay if they don’t get the full fluid amount every day but because of her severe medications, she needs the fluid to flush out her system. Otherwise, the meds could really wreak havoc on her kidneys. This is why skipping a meal is a big deal for her.
- The sun is awesome and it sucks. Because of Laura’s immusuppresant medication, a burn is a big deal for her. Skin cancers of all types are significantly more common in people taking this medication so we have to be very cautious in the sun.
8:25 am- wake Laura up, change her diaper and get her meds drawn up
8:30 am (on the nose!) – med Time! She takes her milk after meds
Time to play! Usually this is her special time to go in her jumparoo to wake up a bit and burn off some of her milk
10:00 – breakfast and then nap time
12:00-1:00 wake up from nap and have milk and lunch(gets magnesium in food)
Play time! Laura loves to walk around furniture, play with her toys on the floor, sing songs with actions, read stories and go outside. She also really loves to paint – chalk paint for outside is really fun but requires a bath. If it’s hot enough we’ll go swimming in her little pool in the backyard.
3:30ish: milk and nap number two!
4:30-6:00- wake up, have a snack and play!!
6:00- supper and magnesium
Sometimes we’ll go swimming, go for a walk or go to the park. This is the easiest time of the day to be outside because we don’t have to worry about the UV rays and the bugs aren’t bad yet.
8:30- med time! Milk and bed – Laura sleeps right through to when we wake her:)
I hope that from this you can see how normal our lives really are. We have some special considerations throughout our day but really she is a normal baby and just loves to play.
If you have any questions about Laura’s transplant and how it affects her don’t hesitate to ask!