Post From Mom - Looking Back

🤣🤣🤣 I honestly thought that once we hit our due date in April that everything would be fine. As a first time Mom and someone without a medical degree I had no idea what to expect. In the beginning, I just assumed we would be discharged once he reached 4 lbs, since that is the minimum weight requirement to be discharged. I figured that once he would be full term at 40 weeks gestation everything would be fine. Well the fact is he needed the safe harbor of being in utero for another 3½ more months. Doctors can only do so much and the incubator is just a clear plastic dome. Artificial wombs are the future. Another topic for later.

The realization of everything not being fine did not occur to me until our nurse mentioned that James may need a trach. We were told it didn't look like he was getting off the ventilator any time soon. It was very hard to hear at first but thinking back...what a difficult thing for that nurse to have to bring up, knowing that I would be devastated but also knowing I needed to prepare myself. After that day, several other nurses and doctors did as well. Each time allowing me to accept the inevitable. (Mike handled it a little bit differently.)

The NICU Doctors can not possibly lay out timelines for parents (even though they are currently trying to put something together). Something we would hear daily, "every baby is different". Every month or two, we would dream up hope of being discharged. It wasn't until I joined the FB groups with the same diagnoses that I noticed these babies were in the NICU for the long haul. So I asked our Pulmonologist and Primary NICU Doctor, "Are we really looking at 8+ months?". Yes, and they wish they could have set those expectations earlier but could we have handled it? I think it would have been too much all at once.

So don't worry about it if you've asked us when we were going to get to go home. I didn't understand at first either. It's a lot of information even with a medical background. It's also confusing when your friend's sister's cousin knows a NICU baby who was perfectly fine. What a blessing. But that's not reality most of the time. It's a rare baby who grows and develops without a 3rd trimester outside the womb. A miracle.

#JamesWeston #MicroPreemie #14WeeksEarly #NICU #PICU #MiracleBaby #1in100 #AskMeAnything #CLD #BPD #TrachBaby #BestPrimaryNurseEver