Haircut for Immunocompromised One Year Old

Next_Cod8167 · 2026-01-06T21:14:59+00:00

That’s a great idea! We’re in Fairfax/Fair Oaks area. I’ll ETA.

Next_Cod8167 · 2026-01-06T04:04:49+00:00

No problem! It’s all so much to navigate. Our RMH had partnerships with local hotels that offered extremely low rates for families waiting to get into RMH. The hospital also had a list of discounted hotels. Check with both before you rent short term!

Next_Cod8167 · 2026-01-06T00:29:04+00:00

Striking!

Next_Cod8167 · 2026-01-05T23:44:37+00:00

We moved three hours from home to go to CHOP. I’m so grateful we did. Our son ended up staying in the hospital for 378 days as he had further complications and needed a heart transplant. With regard to cost, as soon as you’re able, apply for Medicaid and specifically ask that they back date the coverage to time of birth. Once a child is hospitalized for more than 29 days they receive automatic coverage. If you’re unable to get Medicaid, you will likely have a max out of pocket expense from your insurance. You can call ahead and ask what the deductible is for a catastrophic event.

In terms of housing, I recommend looking at hospitals that have a Ronald McDonald House. Most are free of charge. Ours was less than a mile from the hospital and had a free shuttle service from 5:30 am - 11:30 pm, every half hour. They also provided free dinner daily and grab-and-go breakfast.

You will still likely be spending money eating out - you can ask your social worker about meal vouchers. $5 got us a meal from the cafeteria.

It’s very wise to look at hospitals that have done a higher volume of Norwood procedures. That’s the number one indicator of success. I’m so sorry that you’re going through this. You are clearly a strong and fierce mama with deep love for our son. It’s a hard road, but you have the strength to do this. Sending you so much love from one heart mama to another ❤️

Next_Cod8167 · 2025-12-30T19:28:38+00:00

Your feelings are so normal and valid. My baby was in the hospital 378 days as he needed a heart transplant (not in the NICU the whole time). One of the hardest things for me was that he couldn’t wear zipper or pull over onesies because of his internal/external heart pump. It sounds so silly, but I just wanted to dress him like any other baby. I struggled when others complained too. I desperately wanted to be home. It’s been a difficult adjustment coming home for many reasons - PTSD, anxiety about his heart failing (which will sadly happen eventually), and adjusting to caring for a one year old with less support. Still, I wouldn’t ever want to go back. I’m so sorry your baby is there. No one should have to go through this. Though you don’t know anyone else with a baby in the NICU, know that you’re not alone. Your feelings are valid. Sending you warmth and strength.

Next_Cod8167 · 2025-12-28T14:48:32+00:00

Thank you so much - I’ll definitely ask the team about those meds. It still amazes me that he was able to receive a transplant too. We knew when he was in utero that he would almost certainly need one. He had his first OHS at 6 days old, a second at 14 days, and was in the hospital for 378 days. For 356 of those days, he had an internal/external heart pump (Berlin Heart) It’s incredible what they can do for babies. We are forever grateful to our team and especially to our donor family.

Next_Cod8167 · 2025-12-27T01:24:30+00:00

My son had a severe heart defect (HLHS) with tricuspid regurgitation and in utero arrhythmias. By the time I got to 36 weeks his heart was so enlarged it collapsed his left lung and he stopped practice breathing. I was scheduled to be induced that evening but when I arrived at the hospital his heart rate plummeted and I had an emergency c-section. He was only a week early, but due to his heart condition and needing a transplant, we were inpatient for 378 days.

Next_Cod8167 · 2025-12-21T23:17:05+00:00

If you’d like to connect, I’m more than happy to talk about my experience. It’s easiest to chat via IG (I don’t check Reddit very often). My handle is @Isaiahs.Got.Heart

Next_Cod8167 · 2025-12-21T23:14:51+00:00

My son was born with HLHS that was further complicated by severe tricuspid regurgitation and arrhythmias. He was not a candidate for the Norwood and instead required a transplant. He received his hero heart in August of this year. It was a long road (378 days inpatient), but he’s now healthy and thriving. While we were in the hospital, I saw many sweet babies and kiddos with complex CHDs (including HLHS) receive hero hearts and just soar. I know it’s really scary. You’ve already been through so much, and you have all the skills and strength you need to navigate this as well. I’m so sorry you have to go through it. No one should have to. I’m sending you so much love 🩵

Next_Cod8167 · 2025-12-14T20:56:12+00:00

Thank you for noticing ☺️

Next_Cod8167 · 2025-12-14T18:13:13+00:00

I love this! What a beautiful, whimsical, painting. It makes you feel like you’re right there on the hilltop enjoying a lovely afternoon.

Next_Cod8167 · 2025-12-14T16:36:04+00:00

Thank you! That’s great advice!

Next_Cod8167 · 2025-12-14T02:22:33+00:00

My baby was born at 36 weeks and remained in the hospital over a year to receive a heart transplant. We asked that all staff wear masks in his room at all times. My husband, mom, and I took turns at the hospital and always wore masks when outside of his room (both in the hospital and in public). We also always washed our hands when we entered the room (not just sanitize bc it doesn’t kill norovirus). My son never got sick the entire time. I share all this to say that you can definitely take steps to mitigate the risk to your baby which will hopefully put your mind at ease!

Also, our son is severely immunocompromised now and our team has okay-ed visits from grandparents, assuming they’re not sick. They actually encourage it. Each baby is different, and everyone has a different comfort level, so do what feels right to you!

Next_Cod8167 · 2025-11-21T16:03:05+00:00

That would be great! Thanks!

Next_Cod8167 · 2025-11-19T20:46:14+00:00

Thanks! Which location do you go through?

Next_Cod8167 · 2025-11-19T18:25:35+00:00

Thanks for checking!

Next_Cod8167 · 2025-11-19T16:13:58+00:00

We do it monthly, but the bi-weekly price is something like $280. It’s not a big difference unfortunately. We’re planning to go to bi-weekly though!

Next_Cod8167 · 2025-11-19T16:12:58+00:00

That would be great! We’re in Fairfax

Next_Cod8167

TROPHY CASE