25 week old preemie advice

[waluso]

My sister gave birth today to a 25 week old boy. He is 1.85 lbs and 32 cm, and stable so far. I live a thousand or so miles away but am flying out tomorrow for the week to do whatever I can to help. Any advice as to what I can do to help? I know she had an emergency c-section and is in a lot of pain. I assume she will be in the hospital for all or most of the week. Are there any books that might be helpful, or websites with good information? I don't want to overwhelm her but want to be able to help when she's ready. I would really appreciate any advice. Thank you!

[skylarsmama]

It's hard to do research on the internet when you have a 25 week preemie. There are a lot of bad stories and articles. I learned that the hard way.
The best thing you can do for her is to listen. Her baby is going to go through a lot and she will be on a emotional roller coaster for the next few months and possibly still once her baby comes home.
Offer to cook her a meal, give her money for gas to go to and from the hospital, and tell her that you're there to listen as soon as she needs to talk.
I honestly hated the constant questions from everyone that I talked to. About a week after I got home, I just stopped answering my phones. I really just wanted to be left alone to process things.
I have yet to find a place where I feel I can relate. I do belong to a micro preemie yahoo group and I can get btdt advice there. She can ask the hospital if there's any local nicu/preemie groups. I would also suggest that she start a blog. Not only is it nice to have all of the info in one spot, it was my way of updating friends and family without having to sit on a phone for hours at a time or send out 50 thousand e-mails.

[Le Bec]

I second the starting a blog idea. When Erin was in hospital I used to send out a daily text message which would get relayed around the family. It was a pain in the butt because I really didn't want to do it, but it saved the hundreds of phone calls I got otherwise.

If she doesn't already have one you might want to look into hiring a hospital grade breast pump.

[2slm]

My friend had 24w twins and I too came here wondering what to do, how to help. Here's what I found. I am not trying to speak for a preemie mom, just share what I have learned from a similar position your in.

- if your around when she is discharged, offer to drive her to the hospital. My friends dh had to go back to work and she could not drive, so I did several times.
- clean her house
- if she is pumping, buy her extra horns, so she can get a little break in washing parts so much
- buy her a little gift. I had a preemie memory book recommended to me. It's just like a baby book, but with a nicu section and such. I also got the Dr. Sears book on preemies that was recommended to me
- field calls for her. Have people call you for information, instead of her. Make the calls for her. See if she wants to start a blog or even offer to start one for her, if she seems interested and it'd ease her burden
- make sure she's eating and building her strength up as best you can w/o being annoying
- be a support for her decisions on how much she is at the nicu, if/when she goes back to work, struggles with pumping, etc...be the one not judging.
- any errands that she can't get too. Pets to the vet, clean her fridge out, stock it, etc...

I was really nervous and read a lot and found really the biggest thing is to follow her lead. Somedays she feels like talking and then yesterday I called and could tell she really did not feel like giving one more update, she was exhausted, so I kept it short. As I spent several days with her at the NICU, I got some good ideas on ways to keep helping, like where she likes to get hot tea or eat her lunch, and I'm going to get gift cards here and there. I also made sure I congratulated her on her new babies and told her how beautiful they were, because they are. I am a total spectator on this, but I cannot believe myself the rollercoaster ride of the NICU. Be patient, kind, and undemanding. I made sure my friend new I am the one person that is never going to get mad for not getting updates or returned phone calls, because it gets intense with all the sides of the family.

I don't know for sure if I'm doing the right things, but it feels like it so far.

[Amys1st]

hate to jump in, but DO NOT get a micro preemie mom the Dr Sears Book unless its been updated in the last year. Almost all the info is obsolete for micros who are under 27 weeks and will more scare her than help her.

There are better preemie books such as LLL breastfeeding your premature baby.

[skylarsmama]

Originally Posted by Amys1st

hate to jump in, but DO NOT get a micro preemie mom the Dr Sears Book unless its been updated in the last year. Almost all the info is obsolete for micros who are under 27 weeks and will more scare her than help her.

There are better preemie books such as LLL breastfeeding your premature baby.

I agree. I haven't found a good book for micro-preemies yet.

[waluso]

Thank you all so much for the advice, this is so helpful! And I had ordered the Sears book for my sister so I will not give that to her. My nephew is doing as good as can be expected right now so we are hopeful but we know it is day by day at this point.

[soxthecatrules]

I didn't thoroughly read all of the posts....i think this has been mentioned...I would set up a blog or a page on a site such as carepages.com . A co-worker of mine had a 25 weeker and that's how they kept everyone informed. It was 7+ months before their little girl came home. It seemed to be an efficient way of getting the word and pictures out. I'll keep your family in my thoughts and prayers.

[2slm]

Originally Posted by skylarsmama

I agree. I haven't found a good book for micro-preemies yet.

I am sorry. It was recommended to me by 2 different mom's of micropreemies, when I asked elsewhere what I could do/get to help. I knew I had no idea myself. Since more then one person brought it up, I assumed it must be good.

At least it is the thought that counts, but I am so sorry op that you ordered it and it appears to not be a good idea to some, wasting money. I feel awful.

[skylarsmama]

Originally Posted by 2slm

I am sorry. It was recommended to me by 2 different mom's of micropreemies, when I asked elsewhere what I could do/get to help. I knew I had no idea myself. Since more then one person brought it up, I assumed it must be good.

At least it is the thought that counts, but I am so sorry op that you ordered it and it appears to not be a good idea to some, wasting money. I feel awful.

I don't think it's necessarily a waste of money. It does give a good "general" NICU breakdown but there are so many things that make micro-preemies different. I hope I didn't offend you with my reply.

[2slm]

Originally Posted by skylarsmama

I don't think it's necessarily a waste of money. It does give a good "general" NICU breakdown but there are so many things that make micro-preemies different. I hope I didn't offend you with my reply.

Gosh no! I knew I was out of place posting, and shouldn't have in the first place. I happened to pop on and I was just caught up in reading the post and remembering how helpless I felt to know what to do and posted when it wasn't my place.

[kriket]

couldn't read and not post. I'll be thinking about your sisters itty-bitty baby boy! Best wishes!

[waluso]

Originally Posted by 2slm

Gosh no! I knew I was out of place posting, and shouldn't have in the first place. I happened to pop on and I was just caught up in reading the post and remembering how helpless I felt to know what to do and posted when it wasn't my place.

Please don't feel bad! I appreciate all the replies. I will still read the book myself and pass on anything that I think might be helpful.

[sbrinton]

One book I enjoyed was Parenting Your Premature Baby and Child: The Emotional Journey . This book is less about medical info and more about what families go through in the NICU and at home with their preemies.

Your sister will learn about her child's medical issues from the doctors and nurses. One thing that I found to be hard in the NICU was that just a few days after you give birth, the attention is 100% on the baby. No one is paying attention to how mom (and dad) are doing. This book is great because in many ways, the focus is on the parent's emotional journey - sadness, anger, confussion, frustration, depression, PTSD, lonliness, exhaustion, fear...

I would second the advice to help her practically. Help her to eat well and to drink plenty of fluids. Bring chapstick and lotion to the hospital (the rooms are so dry!). Sit with her while she pumps. Bring or make small things for the baby or her room at the hospital. I really appreciated the pictures, cards, stuffed animals, handmade blankets and tiny clothes that decorated our room in the NICU. It made it feel a little more normal and a little less terrifying.

I also blogged and it was very helpful to be able to update everyone just once!

[jlovesl]

Get "The Premature Baby Book" by William Sears. The new one. It tells you everything from when baby is born to special needs when they go home. It also has a great glossary for all the foreign language in the NICU. It really helped me when my water broke at 27 weeks. He was born at 31 weeks and had a pretty bad 1st APGAR score (2), but it helped me understand why everything was happening and what would happen to my baby in the following weeks to come in the NICU. Good Luck to your sister.

[Amys1st]

Originally Posted by jlovesl

Get "The Premature Baby Book" by William Sears. The new one. It tells you everything from when baby is born to special needs when they go home. It also has a great glossary for all the foreign language in the NICU. It really helped me when my water broke at 27 weeks. He was born at 31 weeks and had a pretty bad 1st APGAR score (2), but it helped me understand why everything was happening and what would happen to my baby in the following weeks to come in the NICU. Good Luck to your sister.

Oh thank God they updated it. I am thinking that is the one you bought. But the previous one is great for 27 weekers and later. They basically have the micros not good at all. The previous one also had all that info too but as a micro mom, I had to get past the gloom and doom they had about micros.

[Amys1st]

Originally Posted by 2slm

I am sorry. It was recommended to me by 2 different mom's of micropreemies, when I asked elsewhere what I could do/get to help. I knew I had no idea myself. Since more then one person brought it up, I assumed it must be good.

At least it is the thought that counts, but I am so sorry op that you ordered it and it appears to not be a good idea to some, wasting money. I feel awful.

Dont feel bad! Hopefully its been updated. I should order it myself to find out! I ended up giving my books away to other mamas here and to a LLL group that was starting up.

[waluso]

I have an update and some more questions. Unfortunately things have not gone well for my nephew. He was great the first week then he was diagnosed with NEC, which required emergency surgery. They removed part of his small intestines but didn't get all the bad parts because they were inaccessible. They are waiting to see if it heals. The worst part though is the surgery caused brain bleeds. Level 2 on one side and level 4 on the other. He also has several infections. The doctors are not optimistic but also are not giving the option of stopping treatment (because his lungs and heart are good). My sister is devastated and completely lost any hope. I don't know what to do or how to help. I feel so bad for my sister and even worse for my nephew. I am afraid my sister is avoiding bonding with him anymore because she thinks he will die or be severely disabled. This is so hard. Any advice???

[noahs.mom06]

How much intestine did they remove? I would encourage her to stay optimistic. I don't know about the brain bleeds b/c I didn't have a preemie, but DD has a lot of the same issues that babies who lose intestine due to NEC have. I have talked to many parents who have older toddlers with very little (as in, 30 cm) small intestine, and their kids are just about the same as my 3 year old!
She and her LO are in my prayers!

[waluso]

Originally Posted by noahs.mom06

How much intestine did they remove? I would encourage her to stay optimistic. I don't know about the brain bleeds b/c I didn't have a preemie, but DD has a lot of the same issues that babies who lose intestine due to NEC have. I have talked to many parents who have older toddlers with very little (as in, 30 cm) small intestine, and their kids are just about the same as my 3 year old!
She and her LO are in my prayers!

My understand is that they removed 10 cm and he has 25 cm left. The doctors are now being more optimistic and expect it to heal. They just don't know about the brain bleeds. My sister seems a lot better today and I think she was just in shock. She got to hold him for the first time. I'm hoping that will help her to start bonding.