u/MrsReynaRocha

My baby girl wanted to wish everyone a happy 4th!

We have began using the stroller because it has the necessary storage for all my baby girls equipment and she LOVES it! 💗💗💗

We only have one wean left in two days on the hospital ventilator and then my baby girl will go from the hospital ventilator to the home ventilator! Then we can FINALLY begin our CPR classes for Trach and then planning her discharge date! Can’t believe it’s almost here. After 8 months in the hospital. We will get a discharge date soon!

If you guys read my last post you know last Friday a floater RT played with my daughters vent and sent her into respiratory distress because she didn’t read my daughters chart.
I spoke with the RT manager yesterday… all I can say is wow. 😨

the RT manager was a COMPLETE bser and said they did nothing wrong. I told him that if it happens again I won’t go to him. I’ll go find the higher ups and speak to them. He said it’s not the RT fault and that it was okay to take my baby girl with BPD/CLD from 35% to room air in a matter of 2 hours and it’s my daughters fault for satting good until she showed respiratory distress. Pissed. Me. Off. But I told him if it happens again that he won’t be contacted and it will be taken care of. It was negligence on his employees part for not reading my daughters chart and not knowing where she was working and somehow it got turned around on us.

The nursing staff was not happy and gave me names and number to reach out to if it happens again. This is suppose to be one of the best children’s hospital in TX. How is this sort of negligence allowed? Especially sending my sweet baby girl into respiratory distress.

My baby girl loves her bath time and takes the cutest photos. I’m convinced she poses for these pics on purpose.

Today my baby girl had a floater for her RT. From my understanding this lady has never worked in the transitional care unit. I was told by my daughter’s pulmonologist that we won’t go below 30% on her fiO2 until we go from a hospital vent to a home vent.

Today at about 1 pm my daughter and I both took a nap (had a late night last night b/c days & nights confused) and the RT came in turned my baby girl from 34% to 21% and told me oh she was on room air but then started desatting so I turned her to 25%.

I’m so mad right now. My baby girl has had elevated heart rate and now will need some type of PRN med to help her fully recover from this RTs stupidity.

Should I go to the RT boss? What do I do in this situation. It makes me wonder if the RT was in here playing with my baby girls ventilator how many other babies did she do the same thing to today???

Very irritating. Am I overreacting?? If I am please tell me

Help!

Crazy to think she started at 1 pound and 3.9 ounces and now my baby girl is all rolls!!! 💗💗💗

We spend 7 1/2 months in the NICU. 218 days. But our baby girl has her dads strength and resilience 💗💗💗

Anyone with a trach/g-button baby..
How was the “transitional care” and learning everything for you?

I have been trying to do one “session/class” a day because it also involves my baby girl and I don’t want to overwhelm her.
Will my nerves ever calm down? I’m a nervous wreck changing her Trach ties or anything with her Trach.
I want it to become second nature to me.

Advice!!! Please! 💗💗💗

Today after 218 days in the NICU we are graduating!!! We aren’t going home yet, we have to go to the transitional care unit for Trach Boot Camp for Dad and I. BUT WERE GRADUATING THE NICU!!!
Literally have tears while writing this. I’m so proud of my sweet baby girl! Such a strong resilient little baby. 💗💗💗

My baby girl has been in bed her whole life and now since she has her trach we are able to do more and more with her. She held her head up all by herself finally! So excited! She really enjoys looking around at EVERYTHING!

With the common cold she was feeling pretty bad yesterday but today she’s awake more, shes not desatting as much, and she just wants her cuddles from mommy 💗💗💗
Hopefully next week we are back on track to transfer next door so we can start transitioning home.

This morning my baby girl went up on her oxygen needs and they couldn’t figure out why do they did a viral panel and she came back positive for something. Does anyone know what this is or dealt with it before in the NICU?
She had a bad blood gas this morning (CO2 was 105) and she is know equipped with the TCOM and it’s trending down. Her heart rate is elevated also because she is a little sick.
We were so close to being transferred but the nurse said it is a good thing it happened at the NICU because if she was transferred and this happened she would’ve ended up in the PICU at the children’s hospital where she will eventually be transferred.

The unit my baby girl is going to be transferred to is full so now we wait in the NICU until a bed opens up. They told me next week so fingers crossed!

All the ups and downs. The NICU rollercoaster. 🎢

Starting 1 lb 3.9 oz

Now she’s over 10 lbs and she smiles in her sleep shes dreaming and handles her trach changes like a boss.

Today I changed her trach by myself for the first time and I was SO very nervous. She literally fell asleep. Haha. Completely unbothered.

My favorite little strong human in the universe 💗💗💗