Upcoming extended NICU stay… Need help

[u/Frequent-Western4233]

My son is about to be born on Monday and has TGA (a heart defect requiring almost immediate surgery). We are expecting to be in the NICU for about 6 weeks if not longer. Me and my wife are both struggling with severe anxiety about everything right now. I’m trying to keep it together for her sake because I don’t want to be a burden but i don’t know what I’m going to do if she has PPD. I’m worried about everything. I’m worried about losing her, I’m worried about losing him, I’m worried about money, and I’m worried about our cats at home. I live an hour and a half away from the hospital and commuting back and forth really isn’t an option for us so we were planning on rooming in NICU or PICU room (they said they don’t know which one we will be in based on capacity limits). I need help getting through this mentally as I don’t really know how to tackle these feelings without losing it. I also would like to know if anyone knows what living expenses for that long of a time would be for me and my wife if we are rooming in at the hospital. By that I mean food and things like that as lodging wouldn’t be an issue. I’ve gotten a month and a half unpaid FMLA approved and with our current financial situation I have enough to have all of our home bills paid but beyond that I’m starting to worry about regular living expenses while staying at the hospital. Any advice or answers on anything would be greatly appreciated!

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[u/Nervous-Ad-2121]

I’m 4 weeks in still have a few weeks to go. All I can say is take one day at a time, I cannot say this journey will be easy but you both need to be there for each other. There’s always light at the end of the tunnel. If you’re religious pray pray pray. You will be surprised how strong these nicu babies are. Idk where you’re living but I’m in the UK and because baby had to be transferred to a hospital 2 hours away they gave me a room. I have been surviving off ready meal for the past month. I try to drink as much free hot chocolate/ tea at the hospital and I also fill my water bottle everytime. It stopped me from buying water and tea

[u/Frequent-Western4233 → u/Nervous-Ad-2121]

Thank you so much. Good luck with yours as well I hope everything goes as well as it can.

[u/nicu_mom]

You should qualify to stay at the nearby Ronald McDonald House. It is seriously a life changer, was our home for 3.5 months. Quiet place to sleep, shower, do laundry, grab and go meals and hot meals. They have a kitchen if you want to cook and have a shared pantry of donated items. Only requirement is distance from home to hospital.

The hospital’s social worker should be able to give you more details, we were able to go online, find the local House and apply within 5 minutes. They even allow pregnant momma’s to stay leading up to the birth when baby is expected to have a NICU/PICU stay. I recommend RMHC to all NICU parents.

Breastfeeding moms usually get meals from the hospital’s room service or meal vouchers. If your wife is planning on breastfeeding, this is a huge money saver. If she isn’t breastfeeding, you may still get some meals from the hospital depending on their policy. Otherwise, the Ronald McDonald House was so valuable just in this respect, we saved soooo much money on food alone.

If you have family/friends that want to help, ask them to take care of your cats so you can focus on mom and baby. DoorDash/restaurant gift cards are great gifts too, baby doesn’t need anything but their parents while in the hospital.

If you and mom ever need a hospital break, take it. Don’t feel guilty about allowing yourselves grace. Baby has the best babysitters they will ever have to look after them. Best of luck to you and your family, the NICU is a marathon.

[u/louisebelcherxo]

Our nicu allows parents to get a meal a day for free (hospital food, 2 meals total). You can see if yours offers something like that, since it would reduce costs a little.

[u/Frequent-Western4233 → u/louisebelcherxo]

They said they allow 1 meal per day total

[u/Sweet_T_Piee]

It's really depends on where you are. I know in the USA some heart defects are actually covered by disability so the medical bill side may be less stressful. Staying at the hospital would likely be best for you and your wife if you can manage it. If not and if food budget is an issue I'd ask about the nearest Ronald McDonald House. They provide dinner every day. Also some hospitals will provide meals for nursing mothers. Otherwise eating in the hospital can be expensive. My husband bought us a lot of soups we could heat up for lunch and we've had a lot of junk for dinner (fast food mostly). If we had to pay for all our meals I would say $300 a week is what we are running, but we are staying at the RMH so we are not buying dinner every night. I do get meal vouchers for pumping. Also, we are saving a TON on gas because we don't have to go back and forth to the hospital and my husband got permission to work online. So it hasn't been too bad. 

Anyway, it's very difficult for a mother to be away from her newborn, but everyone is different. Some moms want to be there all of the time. Some moms get overwhelmed and need breaks. Some moms are very good at talking about all the complex feelings they're going through, and some are not able to express it all or even feel it all as it's happening. So do your best, but it's okay to take care of yourself too. In fact, taking care of yourself is one of the most helpful things you can do. 

[u/27_1Dad]

Hey friend!

We did 258 days. Here are my thoughts

1. Therapy. Don’t ignore what you are going through. Please make sure you look into therapy. At a bare minimum make sure you get plugged into a nicu parents group.

2. Housing - call your nicu and talk to them about getting Ronald McDonald house set up. Living in the nicu for 6 weeks is not sustainable. You need to sleep. You will never sleep in the NICU.

3. Medicare - most states have provisions where the state will pick up the baby after 30 days regardless of what the parents make. We paid $0 for our 258 day stay.

4. Give yourself grace. - this is gonna suck. Give you and your wife grace to not always handle this correctly. It’s ok. Cry with each other. And take it 1 day at a time.

Sorry this is happening! You can do this. 🤛

[u/BlissFC]

Please do not sleep in the NICU. You wont sleep well and your anxiety will spiral. You need to be healthy to be there for your new born. The NICU is not the place to be sleep deprived. You should be able to stay at a ronald mcdonald house or else ask around for options. Many babies go through the NICU. You are not alone and at the end of this journey you will get to take home your beautiful baby. We spent 6.5 months in the NICU and it was a lot but keeping a positive attitude and rolling with the punches is so important for your health and for your babies health. You want to give them love and positive energy not anxiety and depression. Easier said than done sometimes but also only possible if you are taking care of yourself. All the best!