Jennyjen, an update? - Sybermoms Parenting Forum
Just Out of the Oven The first year of your baby's life is so crazy and fun. You need a place to get support and advice from other members with newborns, as well as somewhere to brag and tell funny stories.

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post #1 of 42 (permalink) Old 02-28-2010, 10:00 PM Thread Starter
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Jennyjen, an update?

Just wondering how Ella is doing. How are you coping? I know the NICU is a very scary place and things change minute to minute but thought you might have an update for us.

Have you gotten to hold her at all?

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post #2 of 42 (permalink) Old 03-01-2010, 01:02 AM
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post #3 of 42 (permalink) Old 03-01-2010, 11:25 AM
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I just came here to ask for an update as well.

I think about you all the time during the day JennyJen. Click here to enlarge
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post #4 of 42 (permalink) Old 03-01-2010, 11:44 AM
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thinking of you you and Ella and would like an update too please.
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post #5 of 42 (permalink) Old 03-01-2010, 01:54 PM
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I haven't gotten to hold her yet. She is still on the HFOV and the tubing is too rigid. It would be possible, but takes a whole lot of preparation. And on top of that I am still very shaky from all the pain.
Her eyes are beginning to open - I squealed when I saw that yesterday.
She had a PICC line put in yesterday.

To be honest, I am coping better than I expected. Better than Ry expected too. I'm still off the Wellbutrin, but I have a script to fill to hang on to in case I wake up one morning needing it. I think the nurses are really doing a wonderful job. They are giving me every detail they can, which makes things easier for me to understand. The more I know the less I panic. I'm still feeling overwhelmed, but if I didn't I don't think I'd be human. I think, for now, the depression is holding off.

Thanks for asking. I will try to get some pics, if dh can find the cord and send me some.
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post #6 of 42 (permalink) Old 03-01-2010, 02:15 PM Thread Starter
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I hope you get to hold her soon (that part was pure torture for me with one of the twins) and you're right: good nurses make a huge difference.

Are you in pain from the c-section? You should call your OB and see if they'll give you anything for the pain because recovery is prolonged when you're in agony since walking around is the cure for the pain. But if you're in too much pain you can't walk, kwim?

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post #7 of 42 (permalink) Old 03-01-2010, 05:09 PM
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Minimal pain from the c/s. It's more the internal incision than the external. That pain is well in hand. It's more the upper abdominal now. There is little that works for that. In the hospital they were giving me morphine (ugh) and dilauded. That helped some, enough to make me not care about it. But the pain was never gone.

I am really looking forward to the kangaroo care. A lot.

Oh, and 47 asked about the other hospital in my city. I asked the pediatrician today about it, and he said we are FAR better off here bc the other hospital is not equipped to handle complicated 26 week births. They do not have the vent that she is on (he called it a High Frequency Jet), and they don't have all the specialists in one building at any hour of the day. If Ella should need a ped cardiologist at 2am, she can have one at 2:01am. He will just walk down the hall.
So, 75 miles or 500, I would rather be here than anywhere.
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post #8 of 42 (permalink) Old 03-01-2010, 05:14 PM Thread Starter
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I don't see 47 on this thread Click here to enlarge I'm confused Click here to enlarge

Have you looked into what Dr. Hale says about Wellbutrin? I found this on Kellymom even tho it doesn't address Wellbutrin in particular. http://www.kellymom.com/health/meds/...hale10-02.html

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post #9 of 42 (permalink) Old 03-01-2010, 05:15 PM Thread Starter
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Oh nm, it does. Didn't realize bupropion is wellbutrin.

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post #10 of 42 (permalink) Old 03-01-2010, 07:46 PM
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Click here to enlarge
47 is on the ark building thread on the ME. She is of the opinion that I am really stupid for choosing this hospital we're at. Click here to enlarge I seem to think that it's a toos up between this one or Boston, and I sure as shit can't navigate Boston very well. Dh is worse at it than I am.
Our ped said there is a reason that the other level 3 hospital doesn't accept 26 weekers very often, and when they do, they really shouldn't.
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post #11 of 42 (permalink) Old 03-01-2010, 07:50 PM
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Oh, and WRT to wellbutrin, I found a tiny bit of info in a book. Something like 12 infants have been documented as being breast fed while mom was taking it. Of those 12, few if any had the med in their serum, even though it was in the milk. And of those 12 (I think it was 12) one had a seizure at age 6 months. The seizure was not repeated after the mom was off the wellbutrin.

IMO, 1:12 for a seizure rate is awfully high, especially since my dd is so small, and has so many other things going on as well.
I will skip it for now, and when my dh and my therapist tell me they think I should begin it again, I will - no questions asked. Until then we will all just cope.
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post #12 of 42 (permalink) Old 03-01-2010, 07:57 PM
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Quote:
Originally Posted by jennyjen View Post
Click here to enlarge
47 is on the ark building thread on the ME. She is of the opinion that I am really stupid for choosing this hospital we're at. Click here to enlarge I seem to think that it's a toos up between this one or Boston, and I sure as shit can't navigate Boston very well. Dh is worse at it than I am.
Our ped said there is a reason that the other level 3 hospital doesn't accept 26 weekers very often, and when they do, they really shouldn't.
jennyjen, I never called you stupid or said any such thing. If you reread what I said, I questioned why the distance. There are *two* level-3 NICUs in your immediate area. One isn't equipped to handle pre-28 weekers, so I can understand avoiding SNHMC.

But why not the other level 3 NICU? Why would any reputable OB endanger the life of a patient with HELLP and let her choose to travel 75 miles in a life-threatening state (per your description of your health status)?

I can only go on what you describe, jennyjen, and it just sounds like you've gotten some really substandard care from your doctors. You say you're still shaky and in pain a week post-op, so shaky you can't hold your daughter even with proper preparation - that doesn't sound like compassionate pain management if it's interfering with your quality of life and your ability to bond with your baby.

I hope someone is looking out for your and you baby's interests right now at this delicate time.
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post #13 of 42 (permalink) Old 03-01-2010, 08:38 PM
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1. I am unaware of a 3rd level 3 NICU in my state, let alone my immediate area.
2. HELLP is not considered life threatening.
3. I have been with my doctors for over 5 years. Why anyone would think I would switch doctors mid-treatment, especially when I am being treated at the TOP rated hospital in my state is beyond me. I don't understand why anyone would think that it would be a good idea, let alone a preferable idea to change practitioners mid-illness and treatment. I am at the top rated hospital in my state.
4. Please stop acting like you actually care about my well being. There are a select few on this board who have thought from the beginning I have been lying, or exaggerating or mis-leading about anything that's been going on, and you aren't far down the list. The banter is not fun for me. I have many far more important things to worry about than your opinion of my medical care - especially since you don't give a flying fuck.
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post #14 of 42 (permalink) Old 03-01-2010, 08:40 PM
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I'm not sure I know which one SNHMC is. Is that Elliot?
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post #15 of 42 (permalink) Old 03-01-2010, 09:05 PM
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And I missed the word typically. HELLP is not typically life threatening.
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post #16 of 42 (permalink) Old 03-01-2010, 09:13 PM
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And I am in pain, but it's not pain from the c/s. In fact, aside from some itchiness at the site of the incision, I am healing very well. I didn't recover from M's c/s this quickly.

The pain that I am suffering is the same sort of upper abdominal pain that sent me to the ER in the first place. It's in a slightly different place, but it's the same quality of pain. I saw my OB yesterday for it and she ran labs. The labs came back clear so she told me to see my PCP and then possibly get a referral to a GI specialist. This pain radiates to my back, making holding anything rather difficult for me to hold anything, including my purse. There is no way I would risk holding a child, any child, when I can't always avoid flinching when the pain comes on.

I saw my PCP today. He got some xrays and ran a different bunch of labs. I expect he will call me when he gets results.
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post #17 of 42 (permalink) Old 03-01-2010, 09:17 PM
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I am confused. Click here to enlarge HELLP is certainly life-threatening from what little I know, I know that DIC is at an increased risk as is kidney and liver damage. Does your doctors know you still have upper abdominal pain? That worries me, you shouldn't still have pain if the HELLP has resolved.

I don't think there is any harm in exploring other NICUs and researching them beyond what your doctor says. I will admit that I've been very concerned for you because you seem to take what the doctors say at face value and if everything they've been doing is true, you've been receiving substandard care. I know in my area there are NICUs you want to be at for micropreemies, for heart surgery, etc. If there is a NICU closer to you that is capable of caring for her, that would be great for your family.

I am glad she is doing well. Click here to enlarge
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post #18 of 42 (permalink) Old 03-01-2010, 09:27 PM
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Have they checked your gullbladder?

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post #19 of 42 (permalink) Old 03-01-2010, 09:34 PM
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Quote:
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Have they checked your gullbladder?
Are you having any problems swallowing? Be sure not to finch when they start the test. Owl be thinking of you, jennyjen.
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post #20 of 42 (permalink) Old 03-01-2010, 09:54 PM
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So, SNHMC is a nicu about 30 miles from me, and not capable of handling preemies at 26 weeks. So, the center we are at is the only one in my state that we could have gone to.

Yes, my doctors all know about the pain. I saw my OB who delivered Ella yesterday, and she is the one who ran the labs. She's the one who said to see my PCP and probably get a referral to a GI specialist. And they did an u/s of my gallbladder 2 weeks ago. All good.

And what's with the birds? gullbladder? Owl be thinking of you? Click here to enlarge
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