Reservoir Q’s

M

mikalister

New member
I just found out that my 29 weeker (he’s 3 weeks old as of yesterday) has an “urgent but not emergent” need for a reservoir—he had his 3rd brain scan today and the dilation is very severe and progressed quite a bit since last week. When the dr showed me the images, I nearly crumbled—it looks like it has taken over pretty much his entire brain.

We are at a level 3 nicu and they are looking to transfer him tonight to a level 4 nearby for the surgery—which they are hoping to do tomorrow but he’s not currently on the schedule (very frustrating to me). Once he has recovered from surgery, they are saying he would be transferred back (no current beds available and im told its normal to transfer back—but this also frustrates/scares me).

One other point of terror—he has been on nec watch since last Thursday. They are saying he looks better and would taken him off the antibiotics regardless (today is day 5). However the dr that was on yesterday was more conservative and said he would consider keeping him on antibiotics for 7 days (this was before the brain scan today). Thankfully his blood culture has been negative since Thursday, but I just don’t fully trust he is out of the nec woods. The dr here today said bleed trumps any concern re: the infection not truly being over. After seeing the images I can see why she is saying that, but still I’m scared.

I guess I’m hoping anyone can help me with a few q’s:
1) any positive outcomes and what to expect (don’t have to sugar coat though)? Anyone have a scan that looked as scary as ours?
2) should I push to have him stay at the level 4 and not transfer back? What’s the best way to get that to happen/advocate to get him a bed since they say it’s not available? If not, what were your experiences with monitoring etc once back at the other nicu—my concern is he isn’t getting the best care possible?
3) anyone ever been near the end of the nec watch and have this happen?
4) my baby was born so early because I had hellp. Not a question, but I am so upset and angry that my body did this. I know logically it is not my fault but it is so painful (I do have a therapist, it just helps to type it out)

I feel like I am spiraling. Appreciate the help/hearing your experiences and advice
 
@mikalister NICU nurse and parent here-
  1. My son had grade 4 brain bleeds and has a shunt. He does have CP and he uses a wheelchair. But he’s the happiest, smartest kid you’ve ever met. His disability is an important part of him, but it’s far from the only important thing about him. His bleeds did prevent him from being able to eat effectively, and he got a g-tube. He ate nothing by mouth for about 2 years and has recently started to enjoy food, which is so fun to watch!! After a very long, very scary 6 months in the NICU, he’s grown into this healthy, thriving, amazing 3 year old. He’s the absolute light of my life!
  2. The main difference between Level 3 and Level 4 NICU is the availability of surgeons. It’s normal for babies to upgrade for surgery, then go back to their original NICU after recovering for a few days. My level 3B NICU happens to offer brain and abdominal surgeries but we don’t have a pediatric cardiac surgeon, so we very frequently send babies a few hours away to the closest NICU with that service and get them back a few days or a week later. It doesn’t mean your baby isn’t getting top notch care at the level 3 NICU, just that he happens to temporarily need a specialist that isn’t available at the current facility. The staff at the current facility still has expertise in caring for babies recovering from surgeries because back-transfer is so common, and I’m guessing the surgeon at the level 4 Nicu will follow baby’s recovery remotely and offer whatever recommendations may be needed if the level 3 team asks.
Normally, I’d ask why they’re considering a reservoir (temporary solution) instead of a shunt (more permanent solution) but shunts drain into the abdomen, so if your little guy is on NEC watch it makes sense that they wouldn’t want to do the shunt for concern of the abdominal portion of the placement surgery. I’d ask if there’s a longer-term plan for either shunt placement or reservoir removal. The only reason I’d really fight a back-transport is if they’d be looking at a second trip later on to place a shunt once baby’s gut is healthy. But outside the need for a second surgery I’d have no hesitations about going back to the original NICU. (My son was never transferred, but I care for back-transported babies a lot and frequently hear from parents that they’re happy to be back with us! They’ve gotten used to our routines, our staff and facility and feel strange “starting all over” at a new, unknown place with staff they don’t know caring for their baby.)
  1. It’s not super uncommon, especially in the setting of other concerns. It may just be an abundance of caution to help keep baby’s gut healthy while they deal with the acute need for intervention with his brain. The last thing you want is full-blown NEC requiring surgery or major intervention while baby is recovering from reservoir placement.
  2. I’m glad you have a therapist. It’s the only thing that truly helped me process my twins’ early arrival (unknown cause for labor at 27 weeks that couldn’t be stopped). It was always that much harder to cope with my feelings during all of the acute crisis moments of my son’s NICU stay. I wish I had better advice for these scary moments but honestly I just had to push through it for my kid and deal with my anxiety and guilt later. Focusing on him and doing everything I could for him was the only thing that sort of helped. I hope everything goes as smoothly as possible for your little one.
 
@straykat Thank you so much for taking the time to comment and share your story and pov. I realized I’ve actually read several of your comments when searching different topics in this subreddit—your approach and outlook is motivating and thank you for sharing. I hope you know how much it helps new-ish nicu parents like me that are frantically searching here to try and stay away from Google

My son was transferred yesterday and we already feel more at ease, his surgery is this morning and we’re hopeful and holding onto that
 
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