Helping a mama whose LO will be SN

[Ldavis24]

My good friend found out last week that her first LO will be born with gastroschisis. 

She is a very young mama who only just turned 21 and she doesn't have a great support system from her DP at home and he has a toddler girl who she helps raise.

She went to the appointment ALONE for the ultrasound to confirm what her OB suspected, although originally they told her the baby has Spina Bifida that turned out to be incorrect. I asked her repeatedly if she wanted me to go with her to the appointment and no response at all. 

So she told me the news and while she couldn't even pronounce the name correctly she said it was "this gastro thing", I had a rough idea of what she meant and figured it out from there. She seemed really detached about the whole thing although in her words she is upset about having her baby have to be in the NICU.

From all that I've spoken to her about it she seems rather detached or in shock about the whole situation. I sent her a couple links and I even directed here to mothering.com and the forums because I just know this could be an incredible resource for her. Her LO will be fighting an uphill battle from day one but my friend can be as prepared as possible to help her LO in any way she can is my thinking in doing these things.

Well apparently it pissed her off because she is blowing me off every time I try to contact her to say hi and see if she wants to visit or set up a play date. 

I feel like I overstepped my boundaries without realizing it. A couple of links I sent her were specific websites about gastroschisis and support groups, information etc. 

I feel like this mama is brushing off the seriousness of this situation (or maybe I am speculating here and that is always bad). I just want to help her be as prepared as possible but maybe she is still in shock from learning this info or something because the last time I spoke to her about everything I tried asking her what she had learned about the condition and she said roughly that it's just "gotta get operated" and then it will be alright the baby will just have to stay in the NICU for a while until "things are cool"...I asked her if she wanted my old hospital grade pump and I would buy her new tubes etc. She asked me why she would need a pump, sigh....I said so she could still give baby BF in the NICU. She said she figured the doctors would just give baby formula. I asked her if the docs said that would be best and she said she was just figuring.

I am only trying to help my friend but at this point I am feeling like maybe I am just pissing her off because how could I know what she is going through, I had a perfectly healthy little girl with no issues BFing and no issues at all really.

So as SN mamas would you have been offended by all this? Should I just back off the issue completely or is there some other way I can help her?

[mrsfru]

She's in shock.  I'm assuming (possibly incorrectly) that they didn't plan this baby--that is enough to have to deal with.  In addition, she has the responsibility of a toddler on her (who isn't even "hers", although she may treat her as such, so there's that added stress).  And to boot--her baby, her very first precious baby, with all the hopes and dreams and expectations that all mothers have somewhere in their heart for their babies--is not perfect.  She's in shock.  What she needs right now is love and support and an ear and a sense of *normalcy*.  In your own way, you are trying to provide that--you are doing what you probably would do if it were you in the situation (which is the same thing I would do and have done, many times before). BUT not all people are like us.  For some people, that kind of what we call "preparation" is just added stress that is way more than they can cope with right then.  And that's okay.

Love your friend.  Let her have the rest of her pregnancy, as much the way she had dreamed it would be as possible--hopefully w/a baby shower if she wants one--and celebration of her baby!  But back off a bit.  Apologize if you feel you need to (not that you did anything wrong-you're just trying to help), but cut her some slack and give her a chance to get her equilibrium.  Coming to terms w/these things can take a lot of time, and the docs and nurses will help her.  The nurses will likely tell her how important it is to provide breastmilk, as well as have a pump available.  If the baby needs the NICU, it is also likely that the staff will know where she can rent the proper pump for free or low cost as well and they will give her the kit that goes with it.  Pumping for a baby in the NICU definitely requires a hospital grade pump, not one you can buy in the store. 

GL!

mrsfru

[BeautyforAshes]

I applaud you for being so proactive in finding information and support for her.  My daughter's diagnosis was a shock for us when she was born, and I could not even handle talking to anyone about it on the phone.  I was in complete shock and had started having panic attacks.  I had a friend who e-mailed me the same sort of links a few weeks after she was born.  I appreciated the gesture, but I wasn't ready to look at them yet.  Eventually I did look at them, and started doing more researching and reaching out, but it took me until she was almost 8 months old or so.  I don't think you overstepped your bounds--you were just trying to help and she isn't ready yet.  Don't take it personally, keep conversations light (follow her cues), and eventually she'll start to get a handle on the seriousness of her situation and all the help she may need.

[askew]

Coming to terms with a diagnosis is a process. It took me most of the first year of my DD's life. I would gather information, and then not look at it for months. I would stop by the yahoo group for my DD's syndrome, and then get very upset and not look again for months. It was a two steps forward three steps back kind of thing for me. I know you are trying to help, but allow her the space to come to things in her own time. There is no rush. In my experience it was better to bond with my baby and get to know her before I delved in to the what ifs about her future. You friend will have lots of support in the NICU, her doctors know what is coming, she will be fine. Just be there for her however she wants you to be, and help her celebrate the baby instead of preparing for the worst. 

[chiefmir]

I think it is perfectly fine that you tried to help your friend-- and also pretty understandable that she wasn't ready for the information.  I do know that babies with gastroschisis very often go on to have very few (or often no) problems later in life related to the diagnosis.  I had a good friend who was expecting a baby with gastroschisis (she lost the pregnancy a bit later on, unfortunately) and she did a lot of research about what to expect both immediately after the baby's birth and later on in his life.  she started by talking to my DH (he isn't a neonatologist, but his is a pediatrician and saw several cases of gstroschisis while in training) and ended up having a face-to-face meeting with the director of surgery at the children's hospital where she planned to have her baby operated on after birth.  The information she was given was VERY reassuring... she is an info-gathering sort and wanted to know what was ahead, for good or for bad.  Maybe there will come a time when your friend will be able to discuss the situation with someone who will be treating her child after birth... my friend was told that the baby would go directly to the NICU and would be there for several weeks.  Essentially, the intestines are covered in a sterile "baggie" and hung above the baby's abdomen-- slowly over time, gravity allows them to re-enter the abdomen completely and then the open area is closed.  my friend was told by the doctor she saw that he (at least this is true for that particular doctor at a major children's hospital) almost never saw babies with gastroschisis later on in life for follow up treatment since they really didn't often have any follow-up needs.  My friend opted to have additional testing done (amnio, more detailed u/s over time) to rule out other issues that would point to additional problems... but felt very reassured and more hopeful.  She said that she found it very hard to let go of the type of delivery she had planned (I'm not sure if they allow children with their intestines outside of their body to be born vaginally) and the homecomming she'd hoped for, but she did feel better about the possible positive outcome

[Ldavis24]

thank you for the replies mamas,

I totally agree she is in shock as any one of us would be. I realize now that I just need to lay back as you all said and follow her cues.

I think the difference is that I am a manic researcher, as many of us on MDC are, and I take that habit with me into most situations. I always always want to be prepared and as knowledgable as possible, so I assume everyone else wants to compulsively research something to the point of exhaustion.

She is doing well, we are chatting, I don't bring up the obvious. I am just really concerned for her after  the baby is born (yes it has to be a C-section, very risky otherwise, very very dangerous) and how much family support she will get. I will simply let her know that I am available to her in whatever way she needs and whatever way I can help.

I do know, from my own research, that the prognosis is generally very good for Gastroschisis, sometimes there are complications but those are generally outgrown. It is hard for me to relate not having had to deal with this with my own DD. I just feel so strongly about the whole thing. Thank you for assuring me I am not a total arse. I really felt like I pushed things way too far and hurt/offended her but she seems alright, I did apologize for being too hasty and shesimply said, "don't sweat it"...

We'll see, in the meantime we are going to go baby clothes shopping together and have play dates still. So life will be relatively normal for her for a while longer. 

[mrsfru]

Recovering from a c-section, esp while seeing your little baby in the NICU w/lines and such is tough. 

If her family isn't very helpful, the most helpful things you can do (from my perspective of 2 csections and 2 NICU babies) are to handle basics for her--get laundry done, make food, bring her a Starbucks, clean her kitchen (unload dw  , wash dishes, wipe off counters), take out garbage, etc.  In addition, go see her baby at the hospital if it's allowed! It's so important for others to really recognize that she's had a baby.  People treated me like he didn't exist until he was home.  Buy a baby outfit or two-a welcome gift.

You're a good friend! Hang in there with her!

mrsfru