baby m

There is a new EB baby at our local children's hospital. It is the first one since Jonah was born. I found out about him on the Thursday before we left for vacation. He was less than 24 hours old and the diagnosis had not been confirmed. I knew it was EB, but since then, a biopsy has confirmed it. 


Baby M is adorable. He started out with blisters on his hands and feet but they are spreading up his arms and legs. His little bottom area looks terrible, but I have hope that it will improve with some TLC and a few Fuzzibunz. :) I took some supplies when I first found out about him but went last night to help with a dressing change. Matt took some more supplies this morning.


I cannot tell you all the memories that flooded me going back there. 


Patrice, park in the orange deck. Orange is the new purple. It'll give you the straightest shot and it's less crowded up there. Floor 6, remember? There's the waiting room. There's Erica at the reception desk. Can I go in? Buzzzzzz. Remember that that soap breaks you out. Use the hand sanitizer instead. Hi, Sabrina. Hi, Doctor Heather. Hi Brook. Hi Paige. Beep. Beep. Beep. Oh, that's Jonah's room. Oh, Hi, Baby M, in Jonah's room. There's my corner. That's my window. Hey, where's my chair? Beep. Beep. Beep. Aquaphor. Vaseline Gauze. I hate Vaseline Gauze. We're almost out of Transfer. They take so long to get things shipped here. Do you have non-latex gloves? Can I bathe him? Wow, it's impossible to wrap those fingers. He won't relax his foot. Oh my goodness, what are we going to do about that bottom? Hi, Sweet Baby, it will all be over soon. Can we get some morphine over here? Here, Sweet M, have some sucrose. It's okay, Baby. We're almost done. Wow, almost two hours and we only did his limbs. Beep. Beep. Beep. When have you last eaten, Mom? If you're tired of cafeteria food, there is a Panera across the street. You have to take care of yourself. You need to go where you'll have the biggest support network. You need to take a break. Eat. Pump. Sleep. Bye, Bye, Sweet M. When will you be discharged? Mom, this will get better. You'll adjust to a new normal. I know you feel overwhelmed, but you'll learn to be happy. Take breaks. Eat. Pump. Sleep! God is with you. Don't worry about all the what-if's. Focus on today. What are the victories today? He's beautiful. You can do this. Eat. Pump. Sleep. Pray! I'll try so hard to get here on Thursday. I'll send you that information. Call me if you need ANYTHING. 


Validated parking. Go straight to get back on the highway. Oh there's my exit. Hey, Matt. That was so so hard. I forgot how hard that was. Smell my hands. Don't they smell exactly the same?


So tired. Heart-broken for her broken dreams. 


Goodnight, Jonah. You're my hero.