Latest Posts
-
First Outpatient Doctor Appts
Mags in her magon-wagon. We have a slew of doctors appointments this week – yesterday she saw Pulmonology and Nephrology. Thankfully her lungs are clear but this cold is kicking her butt. And of course our night nurse called out… Continue reading
-
Breaking Out of the Hospital
Our little warrior is heading home today after 48 days in the NICU, 13 days at home, 7 days in PICU, 24 hours at home, and back into the PICU totaling 81 days inpatient, 5 surgeries, and a real big… Continue reading
-
A Night of Miracles
I had two doctors come in to talk to me about our different options, the first was having us consider switching to comfort care and letting her die slowly. “We didn’t come this far and put her through this much… Continue reading
-
First MRI & Abdominal Ultrasound
Remember what I said about advocating for your baby? Want to know why it’s SO important? Maggie has been recovering from her tracheostomy and Nissen Fundo surgery. She’s experienced a LOT of bumps in the road from excessive desats, clamping… Continue reading
-
Be An Advocate
Biggest lesson learned to date. No one knows what it’s like stepping into this role but once you’re there, you’re fighting a constant battle. You’re ensuring the best for your child. You’re making sure the whole medical team is on… Continue reading
-
Tracheostomy (Part 2)
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… Continue reading
-
13 Days at Home (Part 1)
13 days at home. That’s all we got before we wound up back in the hospital, wondering where things went wrong, how and why it had to be this way. Our time at home had been wonderful. Though extremely difficult,… Continue reading
-
G-tube Placement
Maggie was making such great strides in the NICU with bottle-feeding, or so it seemed. Some days she would do better than others, but for the most part, bottle-feeding made her incredibly tired and took a lot of effort from… Continue reading
-
Heart Cath for PDA Repair
Maggie had a heart catheter procedure done to close the enlarged PDA (a hole) in her heart by small device. This procedure is commonly done, especially at Sunrise Children’s Hospital, where people travel from all over to have it done.… Continue reading
-
Through Her Eyes…
A poem depicting Maggie and mom’s perspective in the NICU. Continue reading
