Saturday, December 27, 2008

What to expect when you’re expecting a preemie?

I’m at Brigham and Women’s Hospital in Boston, staying the night with my dear friend R. who is 28 weeks pregnant after IVF and now hospitalized for the duration of her pregnancy. She had to be admitted after it was determined that she was having contractions, was four centimeters dilated, and that her membranes were bulging. With medication, the contractions have been stopped. And now she’s trying to eke out as much time as possible before the baby is born.

Once R. got to the hospital, it was also discovered that she has protein in her urine (BP is normal) so they are watching her for preeclampsia. She has received steroids to develop her daughter’s lungs. She may or may not be leaking amniotic fluid (two tests came back positive, two negative). They are estimating her daughter currently weighs approximately 3 lbs.

R. is a very good friend of mine from college. She miraculously got pregnant with this little girl with her own eggs at age 44 – from her first IVF cycle (I am only a little envious of her incredible luck and amazing egg quality). I am going to be her daughter’s godmother once she is born – which her doctors say is likely to be in the next week or two.

Considering everything, R. is doing pretty well. Her family lives a few hours away and can only visit once a week, so she is alone right now. She’s scared, bored, and a little blue after spending Christmas waiting for the impending arrival of her daughter. But she is resilient. And she is grateful to have made it to a great hospital with a good NICU.

This is R’s first – and will be her only – biological child. She hasn’t yet taken any birthing classes, doesn’t know much about breastfeeding, and doesn’t know ANYTHING about preemie births and what to expect after the birth.

So my dear readers and ICLWers , this is where I turn to you for advice.

Since I am nulliparous, I’m not even sure what specific questions to ask. And of course I realize that every week will make a big difference in the outcome for her daughter and that there is a lot of variability between one baby and the next, even when babies are born in exactly the same week. And I also know that based on some of your experiences, 28 weeks sounds pretty far along! That said, moms of preemies, can you give any words of advice to R? What do you wish you had known? What got you through the toughest times? Any recommended reading on dealing with the special issues presented by a preemie?

Thanks in advance for your thoughts, advice, book and website recommendations, etc.

Mo

22 comments:

Lisa said...

Mo - wow, that is really scary and I am thinking of your friend and hoping all goes well.

That being said, I do not have any experience with preemies - I am sorry - I am void of any knowledge or experience.

Not sure if this is helpful but I googled and found this site at the March of Dimes: http://www.marchofdimes.com/professionals/14332_1157.asp

They will probably have some good links and references.

bunny said...

You are such a good friend and I am sure that it takes a lot of strength to be there for your friend during this scary time. I have no info or experience with preemies, but live in Boston, so if there is anything you need, please let me know...

Thinking of you, your friend and little goddaughter.

Nikki said...

Hi Mo,

I'm also not experienced with preemies or even full term babies, but I wanted to send your friend the very best wishes. You are a good friend, and your friend is lucky that you're looking out for her.

GreenEggsNHam said...

Ukulele was only 4 weeks premature, so I am really not qualified here. But I will keep your friend in my thoughts and prayers. I'm so sorry she is going through this, but she's very lucky to have such a good friend in you. I'm glad you're there for her.

GreenEggs

Trish said...

I am no expert but 3lbs and 28 weeks along is fairly good as far as premmies go.

The baby will likely stay in hospital until her due date (10-12 weeks).The Mums get discharged as per normal.

Most babes ventilated for a short while until they are breathing on their own without distress then they have CPAP.

My sons were one month premature and one was 4lbs 8 (2164gm)- they didn't require much intervention at all in NICU .

Your friend is in the best place by the sounds of it.They will surely give her all the knowledge and support she needs.

Another blogger had her little one @28weeks recently and she is going awesome now.

She will have to express for the first few weeks for her daughter ,they put a nasogastric tube down - depending on how well the babe is.It starts a few mls at a time. Then when she is strong enough and has a sucking reflex they start BF ing slowly.

Thinking of your friend and hopefully the little girl will stay cooking a little longer.

Here from ICLW...No. 88
My Little Drummer Boys

Michelle said...

Sorry I don't have any advice because I have never been through it. all I can offer is a lot of prayers and good thoughts. I am sending them all to your friend. I hope everything turns out good!

WiseGuy said...

I do not have any advice to give...but that wil not stop me from prayin that your friend is able to pull through....Peace!

Aaryn said...

Check out www.heleneslutsky.blogspot.com her triplets were born at 27 weeks 6 days. They are all perfectly healthy 3 year olds. She is always willing and actually loves to help those with preemies through the tough times and show them a positve outcome.

Thalia said...

Julie at 'a little pregnant' has a great post entitled 'so you decided to have a baby in the NICU' which is full of the stuff they don't tell you. Her son Charlie was born at nearly 30 weeks due to HELLP syndrome.

Here is a link to Julie's front page, which has a bunch of links about prematurity if you look down the left hand side.

Here's the NICU post
http://www.alittlepregnant.com/alittlepregnant/2005/04/so_youve_decide.html

In that archive there are a lot of posts about pumping in the NICU etc. Most hospitals will be good at this but they need to give your friend a full hospital-grade breast pump as soon as possible after the baby comes, and she should use it as often as she can stand from day 1 - at least once every 3 hours including overnight - to get her supply going. When she's discharged she should get one for home, too, and do rent a hospital-grade one again, not even a pump-in-style advanced will do as good a job as, for example, a medela symphony.

I'm sure she knows this and the docs are telling her this, but the longer the baby stays in the better. There is a huge difference to long term life issues between a baby born at 28 weeks and one born at 30 weeks, and again to one born at 32 weeks. If her water hasn't broken, then that's great and she has more chance of cooking the baby a bit longer.

We all wish her the best of luck.

Duck said...

Mo - wishing good things for your R and her r.

Hope r stays put for as long as possible

lostintranslation said...

Sorry, unfortunately I cannot give any advice on this, but I wish your friend and her baby luck and good health. *ICLW*

April said...

yuck! i wish i had some sort of words of advice.

you're a great friend!

xx

Billy said...

Wow, scary!
No advice to give, just wishing and hoping all will be well with your friend!
iclw

Good Egg Hunting said...

I'm afraid I don't have any advice to lend but I am thinking of your friend. I know from experience that she is in the best possible hands at BWH -- am so happy she made it over there. Really hope she can hang in there for a while more and that all goes well.

Cassandra said...

My friend who delivered twins at 32 weeks had skipped the chapters in the books that talked about labor and birth because she didn't want to think about it. She didn't expect the babies to come so early!

Can't offer any firsthand insights on preemies, but hopefully your friend will have a little time to read up before the baby comes. Best to them (and you)!

ICLW

Geohde said...

My babies were only mildly premature in the end.

But in slight words of hope, I spent 16 weeks threatening to deliver and didn't, with the dint of much medical help. (nifedipine, progesterone, GTN, other drugs, couch arrest etc). Oh, and I lost my mucus plug at 30 weeks.

Steroids = plus. Major issues = ventilation and size/feeding because of lack of suck reflex at this gestation. But you know all that.

I was born at 3 pounds back in the 70's and I seem to be okay,

J

~Jess said...

I have no words of recommendations or advice; just wanted to let you know that I'll be thinking about R and hoping that her little one can get enough time before being born, and that afterwards everything goes well.

ICLW

Dora said...

Hey, Mo! What a great friend you are! Hope your friend is stable and the baby is still inside.

No advice, but I was also a preemie. A 4 pounder way back in the mid 60s. No adverse effects that I can tell.

Bean said...

Oh, I'm thinking of your friend and hoping she makes it at least a little longer. I went into the hospital at 30 1/2 weeks and didn't leave my bed until my daughter was born via emergency c-section at 32 weeks. She then spent 4 weeks in the NICU and the next 5 months at home on a cardio/respiratory monitor. Based on my experience both as patient and then parent during that time is to be pushy! I wasn't, I was scared and I trusted the medical staff and I felt like I didn't know what the heck I was doing. Ask tons of questions, from more than 1 person! Some of the nurses I dealt with were wonderful and helpful and others weren't. No one told me that I should have started pumping breast milk immediately and I was too doped up and wiped out to even think to ask. Fortunately, I didn't end up having any problems with pumping or nursing, but I was ticked that 24 hours later a nurse was tsk tsking me that I hadn't already started pumping. Same issues go with NICU staff. I was told with VERY little notice that my daughter would need a blood transfusion. Turns out they'd been suspecting it would be needed for at least a day, but hadn't bothered to tell us anything. Later than nonchalantly told us that many, many NICU babies need transfusion -- would have been nice to know! Also, the doctors in the NICU NEVER adequately warned us or discussed with us that we'd be going home with a monitor and when they did it was conveyed as something that was pretty minor and wouldn't likely be needed for very long. About a week and a half after we brought her home, at our first appt with the cardiologist I was almost immediately told she'd probably be on it for 6 months. Also, I suggest asking about trying to breastfeed asap and kangaroo care. My daughter actually did much better breastfeeding than she did with bottles (in terms of sucking/swallowing/breathing without turning blue!). I don't mean to make it sound so horrible, in fact, we were fortunate and our daughter is a perfectly healthy 6 year old now. In fact, once we brought her home (except for the annoyance of the monitor) she was a very healthy and easy baby. But hospitals and I think NICUs in particular can be both scary and intimidating, especially as a first time parent who doesn't know much about taking care of a health baby, much less one that is in the hospital and needs special care. I'll be thinking of your friend. It's been awhile, but I'm happy to answer any questions to just "chat" if you or your friend is interested. Just let me know via my blog and I'll send you my email.

Erin said...

Bean has some good advice.

I had a 25 wkr due to pre-e/HELLP after my 4th IVF cycle. Although 28and 25 weeks sounds pretty close in time, those few weeks mean A LOT.

A couple random thoughts from a random stranger:

as bean said, she should begin pumping asap to sustain her milk supply. breastmilk is very good for a preemie's immature gut, plus being a NICU momma, you feel very helpless, and this is one thing that she alone can do for her girl.

also repeating, kangaroo care, this is huge. I was afraid to touch my son at first, afraid to pass on any germs, but preemies thrive with skin to skin contact with mom (and dad). unfortunately preemies have lots of "bad" contact with the nurses, heels sticks, ivs, transfusions, you name it. it is important that mom provide a loving touch. I also would ask to hold my son during his feeds (which, if they are born too early, will be by ng tube through the nose or mouth and into the stomach) and, once he reached 32 wks and his suck had developed, I would give him a pacifier to suck on, that way he would associate sucking and being held by mom with feeling full. I don't know if it helped, but many preemies have feeding difficulties and my son never has.

Okay, sorry to ramble. Hopefully your friend won't need any of this advice!

Mo and Will said...

Thank you guys for all of your comments. R is still holding steady.

Bunny, I appreciate your offer to help since you are in Boston - that is very generous! I think R. has enough people locally to help her but that is very, very kind.

Trish, thanks for the primer on preemies. I will pass it along.

Aaryn, thanks for the blog link. Will send it to R. I checked it out too. Very helpful.

Thalia, Julie's post was the best - thanks! I read this to R (she's currently computerless) and it helped her to start to wrap her head around what's likely ahead. I'm a big fan of Julie's. Thanks also for the bf tips. I bought R a book on this but will keep recommending she get a pump and speak to a LC as soon as she delivers.

Geohde, that must have been scary - but your story will be helpful to R. Thank you for sharing. hopefully she can hold out for several more weeks.

Bean, thank you for your long and helpful post. I will share all of this with R.

Erin - wow. That must have been such a scary time. thanks for sharing your perspective. i will definitely speak to R about kangaroo care. I know they have already talked to her about it at BWH.

Denise said...

I hope R is doing okay. It is such a difficult thing to fear for your child and especially when it has been such a rough road to get there. I went into the hospital at 29 weeks and by far the most common comment I got from nurses and doctors was that at least we were past the 28 week mark. So hopefully your friend can find a little comfort in that she made it to 28 weeks before this happened. Like others have said, the steroid shots are good.

One thing that actually helped me once I got past the fear of it all, was getting a tour of the NICU at our hospital and talking to the nurses there. They were so good about answering questions I didn't even think to ask and I walked away feeling so reassured that even if we couldn't keep the babies from being born, they would have the best of care in a warm and nurturing environment.

My thoughts are with R.

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