NICU journey day 3

[delisyn]

I guess I just need to vent. I feel so down today. I’m only on day 3 of a not sure how long journey. My daughter was born 3 days ago at 30w1 day w PRROM. The doctor today referred to her as a “sick baby”. Like WTF does that mean??? My daughter is on oscillator. She as born crying and breathing room temperature and then next day was put on a vent which they call a honeymoon phase. Please someone tell me it’ll get better. I know it’s only the 3rd but I don’t know what to think. And in losing it, I can’t be strong I just cry and cry and google and think of the worst. I wasn’t expecting all this and every time a doctor says sick lungs or a sick baby I absolutely get more down. She’s stable and making really slow progress so I don’t even know. I feel like they haven’t figured out what’s wrong with her and it’s killing me. There saying it can be an infection and she’s being treated but I don’t know what to think. Like how can I help her get better. What can I do to help her improve l. Just so scared

 

[yourfatcousin]

@delisyn Hi there I’m so sorry. I have a similar story I PPROM at 31 weeks. I had no signs of infection or labor but that all changed. We held on for 12 days then baby was not moving and showing signs of distress at 33 weeks so we had to do an emergency c section. He was rushed to the NICU and I never got to hold him right after birth. We are on day 2. Yesterday we went to visit him and he was crying and not being able to hold him to comfort him really tore me up inside. Seeing him in his incubator with all the ivs and wires everywhere is really hard. Are you able to do skin to skin ? Today I was able to do our first skin to skin for a few minutes. That really helped both of us.

 

[flightlessbird]

@delisyn Reading this now - my doctors used the same words “honeymoon phase” and very sick baby.

 

[makesense114]

@delisyn On the topic of “sick baby” - our NICU had a foundation that helped with a lot of costs. One such cost was paying for parking. In the informational packet, there was a sticker with the full logo for the foundation, and part of the name was “for critically ill children”. Seeing that sticker was one of the times I cried the hardest in my life.

You’ve mentioned googling. Even though our baby came home months ago, I still fall down google rabbit holes that are very unhealthy. (Ours wasn’t born early. He was a full term baby in our level 4 NICU due to a very traumatic birth which led to him receiving a moderate HIE diagnosis and we aren’t going to know if he’s “okay” for years.) Don’t google. Just stay away from it. It’s not going to be healthy for you.

Your NICU might have success stories on the walls. I would read those as they’re there for comfort. All of the ones in our NICU were about babies born early, their weights, and where they are today. I’m sure those would be comforting for those who are also dealing with babies that are born prematurely.

Make sure you are taking time for yourself. You can’t pour from an empty cup. It’s so hard to make the time for yourself but you can’t be the best you for your baby if you are running yourself down.

 

[jsw3883]

@delisyn Hey sorry to welcome you to this terrible club but everyone here understands you completely.

We are on day 155 of our 27+1 550g miracle. She’s 4500g now and finally moved down to nasal cannula and we are hopefully starting our exit.

Honeymoon period just refers to when babies fresh out the womb still have some reserve left from when they were inside you but when to runs out the often regress in their breathing. Our LO was initially on CPAP and had to start oscillating the first night because she crashed out of exhaustion about 12 hours later.

Here is some quick advice I often give to new parents.

1. It’s ok to not be ok. Everyone is gonna tell you how strong you are and sometimes it gets overwhelming. You can and should cry about this and mourn the parts of your pregnancy you missed. Please don’t hesitate to ask for help.
2. Please leave the NICU and either go home or go to the Ronald McDonald house to sleep. Unless they tell you that your baby might not make it through the night, no good happens sleeping in the NICU.
3. Look for primary nurses asap. These are nurses that will be the first ones on the list when they are scheduling your LO. This will allow you to know who is caring for your baby and then give you the ability to detach a little during the experience to recover.
4. Take it 1 day at a time. We tried to prepare for discharge so many times and were disappointed so many times. There are so many setbacks and adjustments that take place in the nicu, just try to get through today. Then try to get through the next day. Don’t get too far down the road.
5. The first week is often a challenge for them to figure out her full medical picture. Your experience isn’t out of the ordinary at all.

You can do this. I’m so sorry. It’s the hardest thing we’ve ever done but lean on your partner and keep fighting for your LO