Advice for Future Preemie Parents?

supgabs · March 2014

Hello all~

My name s Gabi and I am 23 years old. I am almost 27 weeks pregnant and because of a recent Leukemia diagnosis I am preparing to deliver my baby boy in the next 3 weeks. We are hoping for 30 weeks but he may be here as early as 28 depending on how my body handles the chemo treatments.

I have no idea what to expect and I am not sure how I will be able to handle having him in the NICU. My son was also diagnosed with a right MCDK which basically means only his left kidney is functional. That on top of delivering him at least 10 weeks early is really starting to stress me out. I've toured the NICU where he will be staying and I am confident in the doctors and nurses but still.. It's so hard for me to wrap my head around my new reality.

I'm not really sure where I am going with this... I am just looking for some insight on what I can expect, how to deal, and make the best of my shitty situation..

Thanks Ladies

KatFCo · March 2014

First, I'm so very sorry for your diagnosis and having the added stress of a preemie.

As for advice, the best advice is to understand that NICU life is a roller coaster. It may sound trite, but it really is.

Live for the good days and find the good things in the bad days.

With preemies, there's a lot that can seem like it's going "wrong," and although it may be serious, it's probably typical and expected. Don't be afraid to ask the nurses and doctors if it's typical.

Remember, this is your baby; be as involved as possible in his care and don't let them treat you like a guest.

That being said, know that your baby is in excellent hands. The hardest thing is leaving the hospital with your baby still there, but he will be very well cared for.

I hope everything works out for you, and please keep us updated. This board is a wonderful resource.

flerlgirl · March 2014

Sup, @supgabs! I don't know if you recognize me but I am on June 14 with you

I just wanted to say that I have been stalking following your updates and that I am praying for the very best for you and LO.

The other posters have covered it pretty thoroughly! Just take it one day at a time. There is no schedule on when or how you should feel about everything. Life in the NICU is omg so great and omg so bad and back again in one minute. Lots of books, phone charger, magazines - whatever it takes to get you through the day! And know that any time you spend with LO is the perfect amount - if you make it every day, awesome! If you make it every three days, awesome! Just do what you can and that's all anyone can ask of you. Best of luck to you and if you have any questions please feel free to PM me.

flerlgirl · March 2014

Also, I copied and pasted this response from another post way back when because it was more helpful than what I just wrote

In the NICU, they look for two key things: breathing and eating. At our hospital, a baby had to be breathing room air (which means no additional support like extra oxygen) and be able to take 8 feedings a day by breast or bottle. That might vary from place to place so check with your hospital when/if the time comes. You'll be able to visit with your son and likely hold him as long as she is stable, and the nurses are always glad to answer questions and show you what different machines and numbers mean.

As far as preemies - they are all different! But depending on how your son does, you will be given all the resources you need. Physical/speech therapy, specialists, etc - the hospital will work with you to make it as easy as possible to get what you need. You will also need to "adjust" her age - ie, if he was born at 30 weeks, when he is 10 weeks old he will be a newborn. So even though his real age will be 9 months down the line, he will function at a 6.5 month level. By the age of two most preemies catch up and he will be masquerading as a full-term baby

KTZ17 · March 2014

PPs pretty much covered it, but I just wanted to say that I am sending my Ts and Ps your way. You have so much on your plate. Definitely use this board as a resource, as the ladies here are so supportive. The NICU can be very draining, so please take time to rest and take care of yourself. The nurses and doctors will be doing everything they can to care for your LO, and you will need to focus on yourself. Do as much as you feel up to. We are all here for you. Hugs. ETA my DD is a 31 weeker and she is doing amazingly at 9 months, 7 adjusted. Her pedi said she is mostly caught up. She's crawling, sitting up, pulling up, eating solids, and generally kicking ass. 30 weekers can do quite well, too.

Tylynngrace · March 2014

I'm sorry about your diagnosis and then adding a preemie onto it, it can't be easy! My MIL had breast cancer with SIL and also went through chemo and she also delivered her early. Now SIL is a beautiful 17 year old.
I guess my only advice is to not be too hard on yourself. No one could've predicted your situation and you can't beat yourself up for it either. Guilt is inevitable but none of this is your fault. Also take care of yourself. Your baby needs you just like you need him.
I'm thinking and praying for you. If you'd like to talk to my MIL for some insight she said she'd love to talk to you! PM me if you want to talk to her or me!

LucyRicardo3 · March 2014

Hi, My little guy was born at 30w2d after my water broke at 29w6d.
He is home now after a 10 week stay, pretty much up through his due date.

Here's a few things that come to mind :

I would advise you to determine and put in writing for the Nurses if you do/don't want anyone to visit your LO in the NICU after delivery before you are able to for the first time.

Make sure you ask a nurse or someone to get lots of pictures of YOU seeing/holding/touching your LO for the first time.

Leave a disposable camera (labeled with your name) in his drawer, or wherever your NICU keeps his personal belongings at cribside. Let the nurses know you'd like for them to use the camera to get pics when you're not able to be there.

I kept getting sick because I didn't eat well, stay hydrated, or rest like I could have. It's difficult to do that when you're bouncing back and forth, and always on the run. I cannot imagine the additional challenges you are facing due to your health diagnosis.

I kept a NICU bag- like a separate big purse, that I had a stash of chapstick, hairbrush/extra ponytail holder, phone & tablet charger, notebook w pens, extra shirt, pump parts, tylenol, nail clippers, file, hard candy, bottle of water & granola bars. I'd throw my regular purse in it, as well, to and it was my survival bag. That way I didn't have to go back and forth to the pricey gift shop every time I needed something trivial.

I had a situation where I listed a few friends on the authorized visitors list, only to find out later these friends did not wish to have flu shots, etc. It was very awkward, and DH and I agreed just to rip up the list and exclude all other visitors. If I had found out that information before jumping ahead and letting these friends know they could come visit, I could have avoided a lot of hurt feelings with them and other family members I had to un-invite as well.

As far as clothes for your LO, stick with the pajama style one piece outfits that SNAP all of the way down on both ankles. Zippers are a no-go because there is no way to thread the many monitor wires. We were also allowed to bring in baby socks. Of course, this was after he was off his PICC lines for any type of clothing, which took us about 2 weeks.

I will be keeping you and your LO in my thought and prayers..

rkcaraway · March 2014

LucyRicardo3 said:
Hi, My little guy was born at 30w2d after my water broke at 29w6d.
He is home now after a 10 week stay, pretty much up through his due date.

Here's a few things that come to mind :

I would advise you to determine and put in writing for the Nurses if
you do/don't want anyone to visit your LO in the NICU after delivery
before you are able to for the first time.

Make sure you ask a nurse or someone to get lots of pictures of YOU seeing/holding/touching your LO for the first time.

Leave a disposable camera (labeled with your name) in his drawer, or wherever your NICU keeps his personal belongings at cribside. Let the nurses know you'd like for them to use the camera to get pics when you're not able to be there.

I kept getting sick because I didn't eat well, stay hydrated, or rest like I could have. It's difficult to do that when you're bouncing back and forth, and always on the run. I cannot imagine the additional challenges you are facing due to your health diagnosis.

I kept a NICU bag- like a separate big purse, that I had a stash of chapstick, hairbrush/extra ponytail holder, phone & tablet charger, notebook w pens, extra shirt, pump parts, tylenol, nail clippers, file, hard candy, bottle of water & granola bars. I'd throw my regular purse in it, as well, to and it was my survival bag. That way I didn't have to go back and forth to the pricey gift shop every time I needed something trivial.

I had a situation where I listed a few friends on the authorized visitors list, only to find out later these friends did not wish to have flu shots, etc. It was very awkward, and DH and I agreed just to rip up the list and exclude all other visitors. If I had found out that information before jumping ahead and letting these friends know they could come visit, I could have avoided a lot of hurt feelings with them and other family members I had to un-invite as well.

As far as clothes for your LO, stick with the pajama style one piece outfits that SNAP all of the way down on both ankles. Zippers are a no-go because there is no way to thread the many monitor wires. We were also allowed to bring in baby socks. Of course, this was after he was off his PICC lines for any type of clothing, which took us about 2 weeks.

I will be keeping you and your LO in my thought and prayers..

This! Better than any advice I would have given.
I'm sorry for your diagnosis. I'm in remission from leukemia too. I was 27 when diagnosed. I did 26 weeks of non traditional chemo and have been cancer free since 2008. My thoughts are with you during your rough journey.

supgabs · March 2014

I just want to say thank you to all of you lovely ladies. The chemo has really knocked me off my feet and makes it difficult for me to give you all a heartfelt reply but I really do appreciate all of the advice, well wishes and encouragement.

MinaE01 · March 2014

I'm sorry you are dealing with so much right now. I cannot imagine. You are one strong momma! Everyone else gave such great advice. I just want to echo that there will be good days and bad days. Focus on the positive at all costs. Also, don't forget to take care of yourself! That is so, so important, especially for you.

I will be praying that you kick this cancer's butt and that LO stays in until that 30 week mark. You are an inspiration!

Want a personalized experience?

Advice for Future Preemie Parents?

Re: Advice for Future Preemie Parents?

Choose Another Board

Search Boards