Facing the doctors again after being discharged for barely 24 hours was a really difficult thing for me. It was almost embarrassing, but at this point I was done. I was done with everything.

I was done fighting. I was done trying to find other ways to fix things. I wanted my baby to be happy, I wanted her to be healthy, I wanted her to be able to come home and BE home and to never have to go back again (hopefully).

I didn’t receive the warmest welcome from the doctor initially. He would barely look me in the eye, barely even gave me a chance to speak, it was like I wasn’t even talking. He was immediately assuming I was just there because she couldn’t breathe, but when he finally gave me the chance to say, “I want her to get the surgeries”, his whole demeanor changed and he was pleasantly surprised. Although still very drawn away.

The moment they left the room, I cried. I called my husband crying because I was hurt. The next day he was no longer our doctor and he hasn’t been Maggie’s doctor since. I’m totally okay with that.

I felt like I had surrendered, and it was a good feeling. A weightless feeling – to an extent. I was finally ready to let the doctors take over. Do what’s necessary. I want the Fundoplication, I want the trach. I’m not afraid anymore.

So we waited a week before the actual surgery could take place. Dr. Pearson was performing it which I was very grateful for. This was the third procedure he’s done for Maggie so I trusted him. He did Maggie’s first surgery at 22 hours old so he knew her well.

Maggie’s always been a “hard stick”, as they call it. Her veins are tiny, and aren’t always reliable. I hated watching them poke her so much. I finally asked them to bring a NICU nurse up because I knew Maggie’s most successful IVs were in the head and the PICU nurses didn’t feel comfortable doing it… haha! The NICU nurse got an IV in the side of her head in one try! It was beautiful.

My only stress was the intubation. Maggie was a difficult baby to intubate. Her airways were narrow and not properly shaped so getting a tube down there had been difficult in the past, but after surgery, they told me it was easy-peasy. I was so grateful.

Maggie’s initial recovery was a little rough. She was completely sedated and had so many desats. Some as low as 25 for pulse ox. The doctors kept blaming it on other things: her heart, her brain, her T18 diagnosis, etc. I finally said no. No, that can’t be it – you can’t just tell me it’s related to genetics because that’s not a good answer.

After doing a lot of my own research and asking for guidance from other T18 moms, I theorized myself that the desats were caused by heavy sedation and her cuff-less trach. If you don’t know what a cuff less trach is, google it. It basically means her trach doesn’t have a protective barrier to keep her exhales from escaping. It allows oxygen to leak, basically. They don’t like to use cuffs on babies as small as her.

Maggie has shown sensitivity to sedatives before while in the NICU, and it’s not uncommon for T18s to be more sensitive to things like Morphine. Because as soon as they started weaning from narcotics, her desats stopped and she hasn’t had them for a few days now. So after we got through the heavy waters, she’s now doing so much better, recovery wise.