After more than 100 days in the NICU, a bit of advice to anyone just starting out

tgc0908

New member
Reading about other preemies really helped my wife and I so we just wanted to offer some advice to anyone about to begin or still in the middle of this.

Cooper was born on September, 9th 2015, at 23 weeks +6 days weighing about 1lb 7oz. On Sunday, we finally heard that magic word, "discharge."

My advice to NICU beginners is to trust the nurses and doctors, but always be your baby's advocate. If you don't like a nurse for some reason, call the charge nurse and put him or her on what we called "the no-fly list" before you get to your car. You are vulnerable and in need of love, so don't put up with any shit from a snotty nurse or someone who appears to be lazy. This will not happen a lot; for us only twice.

Most NICU nurses are god's gift to earth. But it may happen, so do something about it for you and your baby.

If you think a nurse is doing an amazing job, add her to your primary list before you get to the car. These primaries become your spirit guide through this crazy acid trip. They will know your baby inside and out and help the doctors make the best decisions. They hold your hand, and walk you through the process. Also know that they are a primary for someone else, so you won't always get them each shift they work. You are not the first person to realize that nurse was the bomb.

Lastly, learn about each condition your baby has, the treatments, the associated risks and the alternatives. I Googled things right by the bedside/isolette after speaking with the doctor so it stayed fresh. The doctor's in our NICU treat dozens and dozens of preemies so the phone calls and bedside conversations have been brief and densely packed with easy-to-forget details.

But if you ask good questions you will get good answers. For instance, we pushed for some medicines to treat Cooper's agonizing reflux. The doctors agreed to try something, but it may have been days or weeks later if we didn't ask for it. On Friday, we found the right combo of drugs and the reflux largely disappeared. He started drinking like a fish and then we got his discharge orders drawn up Sunday morning after 101 days.

In summary, stay strong NICU parents. Do your homework and it will help you get through this, and possibly get your baby home a tad bit sooner.

And now for the obligatory before and after photos!

Day 1

Day 101

Merry Christmas to all NICU parents and NICU babies!
 
@tgc0908 Great advice. Our son was born at 29wks, 1lb 10oz in the UCSD NICU in San Diego.

We watched the nurses like hawks and learned how things were supposed to be done. Most of them were great, but every once in a while we would see someone not following proper protocol when they changed the TPN line, or someone with red eyes and a sniffle, etc.

We immediately identified 3 or 4 primary nurses with mild OCD and a pleasant demeanor, and made sure everyone knew we were "on it." We did have to have a few conversations with the head nurse and we were unapologetic with the nurses who we caught slippin'. Sorry, this is our kid, we are not your friends, do your job right.

Our son was out of there in 10 weeks at 4lb and change, and he's now almost 20 lbs with no issues except Chronic Lung Disease (which is supposed to become a non-issue by 4-5 ys old).

Then and now (15 mos after discharge)
 
@slitman What a big boy! Congrats! Good luck with the chronic lung disease, we are in the same boat. I'm hoping it is something that he will fight through and that those "new lungs" the docs promised come soon.
 
@tgc0908 Thanks! So far he's doing OK with the CLD. Sometimes he gets winded while running around or being really rambunctious, but otherwise it's not too bad. We got really lucky and he didn't need to come home on 02. For us, it's the risk of him getting sick and going back into the hospital that keeps us uber careful (as you are well aware). We wear face masks in the store and other public places during cold and flu season, we don't let him play with other kids for now, and we make sure our family knows to quarantine themselves before visiting.

He also got the RSV shot last year (didn't qualify this year).

While we hate to deprive him of fun with other kids, we feel it's a necessary precaution until he's at least 2.5 or 3 years old and his lungs can (better) handle getting sick.

Best of luck with your precious one as well!
 
@tgc0908 So true, you do get to have favourite nurses. The ones that you know are doing this as a vocation not just a job. Congrats on the discharge!!! Now the fun begins!
 
@tgc0908 Congrats!!! What awesome progress :)

Hopefully you guys were smarter than we were and had a changing table stocked before you got home! We got home, went to change a diaper I had to holler for my husband to grab a diaper and wipes.....

Now the fun just takes a different twist. No more driving to the NICU, but no more night nurses either. Enjoy all those middle of the night wake up calls!
 
@tgc0908 I love the after chunky pic! So cute. We are getting closer to discharge and have had a few brand new families in our room. I've found that it's not helpful to hear it's ok or it will be over before you know it, well it's not fucking over yet and I'm still not at home with my baby.
I guess I'd also say, take any help people offer you or ask for help if you need it. My coworkers have brought us meals and it's been frustrating to get help with our dog and my wonderful friend came to help me put our Christmas decorations up. People can't read your mind and having outside the hospital stressors suck.
The time will pass and you will go home eventually and the baby will grow, but it's hard to see the forest through the trees.
 
@tgc0908 Adorable and congratulations!

Isn't it great to see that transition when they start becoming chubby little babies? I've never been so excited to see a double chin in my life!

One thing I regret is that we never put any nurses on our no fly list -- we always waited too long overthinking it. One of them became one of our primaries, and then it felt like that boat had already sailed. :/ Your advice is excellent. Thank you for sharing it!
 
@tgc0908 That is so exciting my husband and I can't wait to bring our little one home. We are at day 94 and he is still on Cpap and he is only eating by a feeding tube. He was born at 24 weeks 6 days and weighed 1lb 0.6 oz. It has been one wild roller coaster. Thank you for sharing your story and giving great advice. We have had to use the no fly list just once at first I felt really bad but I got over that quick.
 
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