Looking for Advice

JennyOR30 · February 2014

Hello, my name is Jennifer. I am currently 25w2d pregnant with my second child. However, DS is 13. At our 20 week A/S, my regular OB found a mass coming off my daughter's tailbone. It's a saccrococcygeal teratoma, and it will be removed once she is born. We have since been seeing an MFM along with our regular OB. At first our goal was to get to 35 weeks. However, at our appt today, our MFM noted an increase in amniotic fluid. Not much, but still some. He's not overly concerned. Her heart still looks good which is a big concern, but she is developing PACs, which is not uncommon in babies (according to my MFM and my regular OB). My MFM is now looking at 30 weeks being our new goal, and I'm just wondering what to expect with NICU and preemies in general. Any advice and thoughts are greatly appreciated.

flerlgirl · February 2014

Hello, Jennifer! In general, getting past 28 weeks is really great for a preemie. The longer she can stay, the better, but at 30 weeks she will likely do really well. Girls tend to do the best in the NICU, too, so that's good. I would be prepared to stay for the 10 weeks in the NICU but you might get to leave sooner if she can breathe and eat well.

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 daughter and likely hold her 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 daughter 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, when she is 10 weeks old she will be a newborn. So even though her real age will be 9 months down the line, she will function at a 6.5 month level. By the age of two most preemies catch up and she will be masquerading as a full-term baby

Best of luck to you and please let us know how you and your daughter are doing!

JennyOR30 · February 2014

Thanks so much. I'm a nurse, but this is a whole new ballgame for me!

flerlgirl · February 2014

JennyOR30 said:

Thanks so much. I'm a nurse, but this is a whole new ballgame for me!

Gotcha. So maybe you can already understand the fancy machines, then

Hannahwilson19 · February 2014

https://necsociety.wordpress.com/2014/02/01/pointers-for-parents-of-preemies/

Hannahwilson19 · February 2014

I also follow peekaboo icu on facebook. They have advice, and encouragement. Just know you're not alone. The nicu may make u feel really alone.

LucyRicardo3 · February 2014

Hi, Jenny!
and a preliminary "welcome" to this board.

This group has been so helpful, supportive, and informative for me, even though I thought I was a seasoned veteran before I landed here.

My little guy was born at 30weeks 2 days on Dec 9 due to pPROM at 29w6d.

Yesterday he was 8 weeks old and we are still in the NICU. But we are on track to hopefully be sprung by his due date on Feb 15. Our current hurdle is getting him strong enough to PO feed longer than 15cc's, and he has severe reflux that is being treated to help with that issue, too.

I've learned that there can be vast differences from hospital to hospital comparing this stay vs my NICU experience with my twins, in a different state. The NICU we are in now is very Development-Care Driven and more on the conservative side as to letting the baby's cues determine when they are ready to wean off oxygen and/or to the PO feeds when that milestone comes.
We've have really good days that we celebrate and a few not so great, where we've have some minor setbacks.

Take time to emotionally process/grieve any disappointment in change of plans for delivery. Regardless of GA and length of stay, that seems to be the biggest thing most preemie parents I've met have had to deal with. They don't cover this awkwardness in detail in "What to expect when you're expecting."

Prayers that your LO is very healthy and has a quick recovery from the needed procedure at birth!!

Marinowski · February 2014

I am a nurse as well so i was familiar with terms but it is a new ballgame when it is your little one. My little girl was born at 33 weeks and a few days. Hoping you have a nicu experience like mine. They were very pro family and encouraged us to hold her and talk to her and were careful to explain how to do everything without over stimulating her. They were very pro breastfeeding and let her try as soon as she could do so, made sure i got set up with a pump ( if you are interested in that) and let us hold her when they fed her via ng. They also made me go home and rest when i looked overwhelmed. She was lucky not to need O2 at all but i will bet yours will need some for a bit and I didnt have a chance for steroids so those may help too. Good luck

JennyOR30 · February 2014

@BostonKisses2 Thanks for the link to the resource blog. It was a very good read and very informative.

Thanks for everyone for all the helpful information. It some ways having time to wrap my head around the fact we are going to have a preemie is good because it gives time to read up on things. On the other hand, it's kind of scary because I do have all this time to process what may or may not happen.

flerlgirl · February 2014

Try not to dwell too much on the "what-ifs" (easier said than done, I know!). The big thing to remember is that they can do incredible things for these preemies! It is really is amazing to see the depth of care that is available through modern medicine and technology. Read as much info as you want but if you don't want to read any, that's okay, too! There is no wrong way to prepare for this; just take care of yourself and come back to talk/vent/ask questions to anyone you need to. And as you are preparing for the possibility of having a preemie, remember to just take it one day or hour or minute at a time. There is no timeline or limit on how long you can feel a certain way or when you have to be "over" a certain feeling. Best of luck to you!

[Deleted User] · February 2014

@flergirl your description was spot on! I don't even think I have much to add.

I had Pprom at 24 and did a tour of the NICU that same week. I was told by the fellow there, that your risks significantly decrease by 29 weeks. I'm sure 30 weeks is a really good goal. Don't be too disappointed if there are little setbacks, either with breathing or the feeds. Your baby will do its course on his/her own time. Just be patient. Good luck and update us when you can!

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