I need some preemie Momma Nicu/support advice

ABColeslaw

My cousin has been in the hospital for a couple weeks.  She was diagnosed with pre-e at 27 weeks.  They've been trying to hold off delivery with mag and other meds, but she has taken a turn for the worse. Her lungs are filling with fluid and she can't breathe without help.  They think the baby is going to be born this weekend.  The good news is that she got both shots.  But it is going to be a long up and down road.  My question is, after you delivered your preemie and were thrown into the nicu rollercoaster, what did you most want/need from your close family.  Everyone is telling me what I can get for her and those type of gestures.  But what did you really need or want and not want to as for?  TIA

**EDIT** the baby was born 15 minutes ago.  I don't have any details.  

light52

Although our stay wasn't long, it was still tough.  I wanted someone who understood the lingo and could be an ear to listen to the ups and downs.  My mom tried to be that but never really caught on to what half of the medical issues were.  Luckily our Neonatologist is one of my closest friends so we talked a lot off the record.

Second, I had two kids at home and I wanted people helping arrange their care.  We felt we were spending half our day rearranging childcare and therapy schedules for the other two kids.  My inlaws finally jumped in and took over as much as they could.

ABColeslaw

light52:

Although our stay wasn't long, it was still tough.  I wanted someone who understood the lingo and could be an ear to listen to the ups and downs.  My mom tried to be that but never really caught on to what half of the medical issues were.  Luckily our Neonatologist is one of my closest friends so we talked a lot off the record.

Second, I had two kids at home and I wanted people helping arrange their care.  We felt we were spending half our day rearranging childcare and therapy schedules for the other two kids.  My inlaws finally jumped in and took over as much as they could.

Okay I have the first part covered.  And my aunt is a nurse, so she should be able to really support her there.  

She doesn't have any other children and no animals to care for.  

ABColeslaw

CurlingRocks:

Please visit the blog in my siggy.  It has tons of great advice on this topic!  (Mostly from bumpie moms)

As for my personal experience, I needed people to listen during that time and not pester me.  (I don't mean that as a slam against you.  But I do mean the word "pester.")  Some people just didn't get how difficult it was for us and kept pressuring us to visit DS in the NICU, which was not ok with us.  (Everyone feels differently on this issue.  Some people were bringing in visitors regularly, others didn't bring anyone.  We brought grandparents, and even they were only allowed a few visits.  We needed our privacy and time to heal.)  Others kept asking for FB updates, which we didn't have time for, or inviting us out, which was extremely low on our list of priorities.  I just really needed people to listen if I needed to talk and not ask a lot of questions, a few were fine, but not an interrogation.  And it was nice when people offered to bring dinner for us to eat at our convenience.

If you want my hands-down best advice, it is to ask her what she needs and then do it, whatever it is.  If it is "nothing", just back off because it isn't about you.  The thing that irritated me the most was the people who tried to make everything about them.  It wasn't about them.  It just wasn't.  And 2 years later, we still have some hurt relationships because people just couldn't handle that their "generosity" was not appropriate for the situation at the time they offered it.  Oh well.  I hope you won't fall into that category; it is very sweet that you want to help!

I can see what you're saying. I have no desire to stress her, pester her, or overwhelm her.  Thats why I'm asking   I know her really well and she never asks for help.  I don't want her not to get support she needs because she doesn't want to ask.  I will ask her what she needs and then go that route.  

dandywarhol

Tangible things I have appreciated are: a gas card (helpful with the long drives to hospital), food (after a long day at the nicu it is nice to not have to think about or make dinner), gift certificates to restaurants near hospital, a burt's bees hand care kit to pamper the hands after all the washing. 

Some families might feel differently about this but I appreciated the flowers, cards, edible arrangements celebrating DD's birth. We are still in the thick of things with DD's journey but she is here and I am thankful she was born and is still with us. So buying permanent baby stuff (car seat, crib, pnp) is still too far away, little things celebrating her birth were/are appreciated. Ask the new mom how she feels about such things.

Stay positive for her. the hope for a positive future is very important. 

Cst2CstBride

I completely agree with asking what your cousin needs.

For me, I appreciated when people were honest and said, "I don't know what to say" or "I can't imagine how hard this is". People who tried to cheer me up or tell me how everything would be great were hard to be around.

My delivery at 27 weeks due to severe preeclampsia was unexpected. I delivered 2 hours after dx. I absolutely hated when people would cheerily congratulate me on my daughter's birth. I was devastated that she came so early and did not appreciate people acting like it was a great thing. I get that this is tricky because I'm sure that other moms would like to be congratulated so take her lead on that.

One of my friends made a very elaborate scrapbook type name sign for dd's isolette that really meant the world to me. It was so thoughtful and helped the NICU get to know DD.

Please let us know how it goes. I'm thinking all sorts of good thoughts for her.

ABColeslaw

Cst2CstBride:

I completely agree with asking what your cousin needs. For me, I appreciated when people were honest and said, "I don't know what to say" or "I can't imagine how hard this is". People who tried to cheer me up or tell me how everything would be great were hard to be around. My delivery at 27 weeks due to severe preeclampsia was unexpected. I delivered 2 hours after dx. I absolutely hated when people would cheerily congratulate me on my daughter's birth. I was devastated that she came so early and did not appreciate people acting like it was a great thing. I get that this is tricky because I'm sure that other moms would like to be congratulated so take her lead on that. One of my friends made a very elaborate scrapbook type name sign for dd's isolette that really meant the world to me. It was so thoughtful and helped the NICU get to know DD. Please let us know how it goes. I'm thinking all sorts of good thoughts for her.

 Okay!  Thank you, we will make an awesome sign, how big should they be?  I get what you mean, my aunt is all "I'm so excited I can' t sleep"  My sister and I cried.  I'm happy my cousin has a baby, but I also know that it is going to be so hard for her as well and I know my cousin was devastated to be delivering so early.  

Brummy14

Tangible things are great -- someone who I hardly knew set up a Mealbaby registry for me so people could send GCs/bring meals -- and suggested I just leave a cooler outside because she knew I wouldn't be home (which I wasn't - I lived at the NICU). Making food at the end of the day was the LAST thing I wanted to, so that was a huge blessing.

If she seems like she wants space/is distant, let her be. I go really frustrated when people were hounding me for updates (so I just took to FB proactively and updated regularly). When I went "radio silent," -- whether it be because there was just no news to share or it just slipped my mind, people FREAKED. Drove me nuts. I know it all came from a good place, but, man.

No one can understand what this journey will be like without having been through it yourself. As a new mom and as a NICU mom -- your life/perspective changes in a thousand ways in mere minutes. I, like your friend, am not someone to ask for help. However, what was most helpful to me were the people who respected the distance I needed -- and were there at the drop of a dime when I reached out, even sightly, to them. 

 GL to your friend -- and kudos to you for being a great friend and reaching out here.  

LnR70707

Lots of T&Ps for your cousin and her LO.

DS was a late term preemie and was only in the NICU a week, so my opinion will probably differ a little, but I felt like everyone was almost too hands off or afraid to do anything.  It was really hard being on the post partum floor with no baby in the room and literally no sign from anyone that I'd even had one....so I think the usual cards/flowers are great (with note expressing T&Ps of course).  

thishappyhouse

You have gotten a bunch of different opinions and I think that is indicative of how different people handle this type of situation (from a NICU mom perspective).  For me, I appreciated anything anyone offered.  Im not usually one to ask for help but I did say yes to things that people offered. I never had problems with people being overbearing or pushy, but then again I was able to tell people when it wasnt a good time for a visit or when we just needed time to ourselves.  We also set up a blog immediately after birth which helped with keeping people informed without "bugging" us.  

 

The most helpful things were: gas gift cards,  people paid for our monthly parking, my sister got me nursing tanks and pumping supplies (none of which I had bc I was on bedrest), freezer meals (including things for breakfast like muffins/ quiches etc).

 

The sentimental things were nice too.  We really loved anything personalized that we could have in the NICU.  Blanket with her name on it, a sign for her isollete, preemie hat with her name on it etc.   

KatFCo

I haven't had time to read all the responses, so I apologize if I duplicate anyone else.  

I wanted someone to sit with me. The NICU can be a very lonely place and for the 3.5 months we were there, it often felt like we were of two different worlds. Outside the NICU, people seemed to not realize just how difficult it is and how isolating it can be.

 As for tangible, we appreciated gift cards to the hospital cafeteria and money to help pay for the parking garage.

The worst thing we got was people saying "I knew X who had a preemie and they're fine now." It may seem like a reminder that these things can work out for the best, but when you're living it and seeing all of the bad things that can happen, it's only a reminder that for every child who is "fine now," there are X number of children who are not.

I hope your cousin and her baby do well and I'll pray for them.

Cst2CstBride

ABColeslaw:

Cst2CstBride:

I completely agree with asking what your cousin needs.

For me, I appreciated when people were honest and said, "I don't know what to say" or "I can't imagine how hard this is". People who tried to cheer me up or tell me how everything would be great were hard to be around.

My delivery at 27 weeks due to severe preeclampsia was unexpected. I delivered 2 hours after dx. I absolutely hated when people would cheerily congratulate me on my daughter's birth. I was devastated that she came so early and did not appreciate people acting like it was a great thing. I get that this is tricky because I'm sure that other moms would like to be congratulated so take her lead on that.

One of my friends made a very elaborate scrapbook type name sign for dd's isolette that really meant the world to me. It was so thoughtful and helped the NICU get to know DD.

Please let us know how it goes. I'm thinking all sorts of good thoughts for her.

 Okay!  Thank you, we will make an awesome sign, how big should they be?  I get what you mean, my aunt is all "I'm so excited I can' t sleep"  My sister and I cried.  I'm happy my cousin has a baby, but I also know that it is going to be so hard for her as well and I know my cousin was devastated to be delivering so early.  

DD's sign was about two thirds the length of her isolette. It had circles cut from pretty paper with one letter of her name in each circle. They were tied together with ribbon and then taped to her isolette. It was bright and pretty and helped her isolette feel more personal.

hugmonkey

I valued people giving me space.  I felt too overwhelmed with going back and orth to the nicu.  Having people call me to see how things were going just felt like people demanding more of my time that i couldnt spare.  What was most helpful to me was food.  I had no time to cook.  My husbands company sent us $250 worth of catered food yhe day i got out of the hospital.  We divided it up and froze it, and it fed us for 2 weeks.  That was the most helpful thing anyone did for us.

takmjs

These are all great ideas, and I cried thinking about the support and gifts people are willing to give....and my daughter is now 17+ months, 16 months since she left the NICU. It's very emotional and personal, and different for each mom.

For me, I wanted space and MY closest family (of course, that's all that lives around us, my cousins/aunts/uncles are all 5+ hours away). I understood that my husband's parents wanted to see their first grandbaby, but I mostly wanted time to myself and with my husband with our daughter. My ILs were very sweet and considerate to offer to drive me up to the hospital (I slept almost the whole time every time they offered), and then they would leave after a couple hours and leave me there alone until my husband got there after work. I loved the alone time with my daughter. It was just awkward for me needing to pump with my in-laws around (and failing miserably at it--I wanted to cry every time I pumped, so I just wanted to be alone).

With the hospital being 90 minutes from our house (and being in that hospital on bed rest for 6 weeks right before delivery), gas cards were great. We were filling our tank every 2-3 days.

They have books for preemie parents, and I liked those. There is also a baby book out there specifically for preemies (it has stuff about oxygen, feedings, weight gain each day, firsts in the NICU, and adjusted age milestones). I didn't get it in time, so I didn't write down when all those things happened, but that could be really nice.

i really like the cooler outside the door idea. I think I'll write that down in case we have another preemie. We also spent a lot of money at restaurants near the hospital, so gift cards for those would be nice.

Sorry so long. We appreciate the help, but also are emotionally exhausted all day long, for as long as the NICU stay is (and then some). From your initial post, I can tell you will be respectful of her. 

ABColeslaw

Thank you ladies for all the ideas.  My sister and I are making a sign tomorrow.  My sister is really good at things like this, she has her own stationary and high end wedding invite business, so she has all the equipment we could need to make an awesome sign. 

My cousin actually reached out today and said she'd love to see us.  She hasn't been able to see her baby yet because she is still sick.  The baby is doing really well, she is on CPAP, but is very strong.  She is adorable.  

 

I think we'll go see her on Monday and we'll get a feel for the parking situation, the food situation, and the area.  I delivered my son at the same hospital, but I was only there for a week, so I'm not sure of these things.  

I'm also going to look into a personalized blanket and hat.  Does anyone on here know of an etsy seller that can make preemie sized hats?  

sdtchica13

Ditto everyone else on the comments thing, you would not believe some of the stupid stuff that comes out of people's mouths when they are trying to cheer you up. 

As for what to do for her, maybe an amazon gift card if she has a kindle or an itunes gift card if she had an ipod/ipad...she will be spending a ton of time in the NICU and in the beginning, there is not much she will really able to do but sit there. If I had not had a smartphone to bump from, I would have lost my ever loving mind!

Also, once her LO has been there a few weeks and is out of danger (for us it was about 4 weeks in or 34 weeks GA), try and get her out of the NICU a little bit. Take her for lunch or a mani, or just for a walk...it is very easy to be totally absorbed by the NICU and forget about the outside world.

Best of luck to her and I hope that sweet baby has a short and uneventful NICU stay! 

mommaoftrips

I love the ideas for gas and food, especially freezer food. The one thing I haven't really seen in the responses is to get her some preemie clothes as this is something NOBODY gets ahead of time as nobody expects a preemie. She won't need it right away and you will likely need to order it as you can't really find it in stores but newborn clothes will be too big and she will not have time to go shopping for these. I really appreciated the people who ordered these to our house or dropped them off especially with 3 LO in the NICU. Food and gas are very very good ideas! GL, TP.

DrRx

Everyone has given lots of good advice and made excellent points.  One thing I want to add that my sister did for me, which I would've never thought but I'm glad that she did, was get Adalyn a few girly balloons (to keep in her NICU room) and a sign that was pink that said "Baby" that we hung up on her door.  At 27 weeks, your cousin's child will be there for a few months.  It was nice having the place sort of decorated.  I'm glad that you're going to make a sign to put on her isolette with her name. 

One of my friends just drove by my house shortly after we had her (while she was still in the NICU) and gave us about a weeks worth of easy to prepare groceries (cereal bars, instant breakfast, frozen foods, etc).  It was so unexpected and wonderful, I didn't know what to say.  It was something that I needed that I didn't even know I needed.  Going to the grocery store is a task that can be exhausting when you are pumping and going to the NICU and dealing with everything.  

light52

One other thing I just thought of is to mow their lawn when it needs it.  If she is the type not to ask for help she and her husband will probably try to do it all and feel exhausted.  A lawn can be mowed without needing to get into their house and it would be a welcome sight when they got home at night and realized there was one less chore to do.  I'm lucky to live in a neighborhood where we all take care of each other and if a neighbor knows we are having a rough week, many times they will mow at least our front yard (we do the same for them).  It is always a welcome sight and a huge relief.

takmjs

mommaoftrips:

I love the ideas for gas and food, especially freezer food. The one thing I haven't really seen in the responses is to get her some preemie clothes as this is something NOBODY gets ahead of time as nobody expects a preemie. She won't need it right away and you will likely need to order it as you can't really find it in stores but newborn clothes will be too big and she will not have time to go shopping for these. I really appreciated the people who ordered these to our house or dropped them off especially with 3 LO in the NICU. Food and gas are very very good ideas! GL, TP.

I know it depends on the hospital, but ours suggested we NOT bring clothing for our baby at the hospital, since they might get stuck in their laundry and we may never see them again. Once she got out of the hospital, she was about 5 1/2 pounds. The preemie clothes fit her best, but only for a week or two, then the newborn clothes fit her for a good month or two. I would skip the preemie clothes, or just get a few outfits....that was our experience anyway. We had LOTS of preemie outfits that she only wore once, bc we had so many.

some hospitals make you bring your own clothing, though, so make sure to check with her about that. 

mcarter127

Hey Mama! 

Youve gotten tons of great suggestions & a lot of it really depends on the person. It drove me nuts when people said "if there's anything you need..." Because first of all, I didn't know what I needed & second of all it is just awkward to try to come up with things to ask for. The gift card you sent to us was awesome because I could use it for food when I was basically living at the hospital at that point. The suggestion for a sign for the wall or isolette (we couldn't put anything on her actual isolette so it will depend on what kind they have) is great, it makes the space so much more personal! I love your idea of a personalized blanket & hat. It's a tough balance between wanting to celebrate your baby & being scared out of your mind & devastated that they arrived so early.

Since you're so close to her, offering to do things like laundry, cleaning & yard work would be super helpful. Stock the freezer with some easy to prepare meals for when she comes home.

Check with the NICU regarding their policy for clothes. We have absolutely LOVED every outfit that has been sent to us! The type of outfit you got for Ellie is great because its NICU approved so that makes it easy! The small receiving blankets have been really great too. The nurses can put them over the pad in the isolette & it makes it look nicer than just the regular hospital issue receiving blankets. We also made one of those fleece tie blankets to go over the isolette. The hospital has them but it was nice to have our own & then we could keep going with her ladybug theme! We've essentially turned Ellie's room into her nursery. Once she's feeling better, you can help her decorate & it really made me feel better. I also think when anyone walks by, they can see just how much Ellie is loved!

 

mcarter127

KatFCo:

The worst thing we got was people saying "I knew X who had a preemie and they're fine now." It may seem like a reminder that these things can work out for the best, but when you're living it and seeing all of the bad things that can happen, it's only a reminder that for every child who is "fine now," there are X number of children who are not.

I hope your cousin and her baby do well and I'll pray for them.

I also wanted to agree with this! It was frustrating to hear other people's stories & mostly because they're usually second or third hand & by the time it's been passed down, the details are completely jumbled. I heard crazy stories about "22 weekers" who did great & had no problems...I somehow doubt that's really the case. It also just seemed like it was minimizing the hell we were facing in that moment. I absolutely know that people have the best intentions with this one but it's just not helpful at all. Every preemie is different & unless its someone sharing their own NICU journey (that's similar) then it really doesn't help. It was completely ok with me when people offered to put me in touch with their friend who also had had a micro preemie though. It's just the comments like "oh she'll be fine, my friend's cousin's sister had a 23 weeker who's never had any issues!" That got to me! 

ABColeslaw

mcarter127:

KatFCo:

The worst thing we got was people saying "I knew X who had a preemie and they're fine now." It may seem like a reminder that these things can work out for the best, but when you're living it and seeing all of the bad things that can happen, it's only a reminder that for every child who is "fine now," there are X number of children who are not.

I hope your cousin and her baby do well and I'll pray for them.

I also wanted to agree with this! It was frustrating to hear other people's stories & mostly because they're usually second or third hand & by the time it's been passed down, the details are completely jumbled. I heard crazy stories about "22 weekers" who did great & had no problems...I somehow doubt that's really the case. It also just seemed like it was minimizing the hell we were facing in that moment. I absolutely know that people have the best intentions with this one but it's just not helpful at all. Every preemie is different & unless its someone sharing their own NICU journey (that's similar) then it really doesn't help. It was completely ok with me when people offered to put me in touch with their friend who also had had a micro preemie though. It's just the comments like "oh she'll be fine, my friend's cousin's sister had a 23 weeker who's never had any issues!" That got to me! 

Yeah every baby is different and it isn't fair to minimalize.  While I have never been through the hell of the NICU, I've lost a baby before viability and when people make that out to be NBD, it really bothers me.  

She has actually been talking to me a lot and when she says "How the heck do you know all this stuff, I tell her about Ellie"  She likes hearing about Ellie actually and she asks questions, but I would never compare.  They are so different.  

BTW I wanted to let you know since I haven't updated, the baby had to go on a breathing tube, she wasn't doing well with CPAP.  I got a first hand glimpse at the hell a setback causes, it was their first hiccup and it was hard for them.  So I honestly can't imagine some of the hiccups you've had  

 

rslhmg

I was able to stay close to the hospital so for me meals and respecting boundaries were the best thing. When I first got release from the hospital I had nothing but the clothes I was admitted in, so dhs family brought me a nice robe and some clothes from home which as well as toiletries, which were much needed and appreciated. They also deep cleaned the house a few days before DD came home, which was a huge load off. I'm not sure of your cousins situation, but if she's not near by the hospital gas cards are good, meals, and if there are other children offering babysitting is good. Otherwise the best thing would be checking in with her to see if she needs anything would be all I can recommend.

mcarter127

ABColeslaw:

mcarter127:

KatFCo:

The worst thing we got was people saying "I knew X who had a preemie and they're fine now." It may seem like a reminder that these things can work out for the best, but when you're living it and seeing all of the bad things that can happen, it's only a reminder that for every child who is "fine now," there are X number of children who are not.

I hope your cousin and her baby do well and I'll pray for them.

I also wanted to agree with this! It was frustrating to hear other people's stories & mostly because they're usually second or third hand & by the time it's been passed down, the details are completely jumbled. I heard crazy stories about "22 weekers" who did great & had no problems...I somehow doubt that's really the case. It also just seemed like it was minimizing the hell we were facing in that moment. I absolutely know that people have the best intentions with this one but it's just not helpful at all. Every preemie is different & unless its someone sharing their own NICU journey (that's similar) then it really doesn't help. It was completely ok with me when people offered to put me in touch with their friend who also had had a micro preemie though. It's just the comments like "oh she'll be fine, my friend's cousin's sister had a 23 weeker who's never had any issues!" That got to me! 

Yeah every baby is different and it isn't fair to minimalize.  While I have never been through the hell of the NICU, I've lost a baby before viability and when people make that out to be NBD, it really bothers me.  

She has actually been talking to me a lot and when she says "How the heck do you know all this stuff, I tell her about Ellie"  She likes hearing about Ellie actually and she asks questions, but I would never compare.  They are so different.  

BTW I wanted to let you know since I haven't updated, the baby had to go on a breathing tube, she wasn't doing well with CPAP.  I got a first hand glimpse at the hell a setback causes, it was their first hiccup and it was hard for them.  So I honestly can't imagine some of the hiccups you've had  

 

I'm sorry to hear she had a setback. It's pretty common, especially in the little babies but very frustrating & scary nonetheless! Please feel free to pass on my contact info if she wants it. I would be more than happy to offer any support I can. It's such a unique journey & it can be nice to have someone who is going through the same stuff. 

flerlgirl

Gas cards and fast food gift cards were like gold to us. And the biggest thing was for people to understand that my emotions were constantly changing. I'm not the Queen but if I snap at you after my baby stops breathing, just roll with it. I promise to apologize later. So for that one I would just be honest about what you need. If there are too many visitors, it's okay to ask for privacy.