Anyone having trouble coping?

Melanie - posted on 03/09/2010 ( 3 moms have responded )

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Okay, this is a little embarrassing, but I wanted to ask if any other moms are just having trouble with their emotions regarding all this?

My pregnancy with Bella ended in a very scary way, I developed a liver condition known as Colestasis of Pregnancy, which they told me could result in sudden infant death. We had to decide how long we were comfortable leaving Bella in, knowing the risk to her, and how early we were comfortable taking her, knowing the risks in not letting her develop fully. They noticed the hemangioma hours after she was born and it's been a roller coaster ever since.

When the hemangioma that we could see (she's got two internal ones also) swelled, it pressed on her facial nerves and the one side of her face completely collapsed, there was no movement at all for about 12 days. This, luckily, sped things up and got us an MRI very quickly when she was only 5 weeks old. They then found the two internal hemangiomas, one near her optic nerve, and one that lays on her airway. Because of the position of them, they are not able to swell at all, doing so could be fatal for her. Since then, we've been on medication. She was on max dose steroids for about four months and now she's just on the propranalol.

She's doing fine, but I don't think I am. I don't feel better as she "gets better". I feel like I'm still riddled with anxiety and fear, and I just don't have the ability to cope with anything other than her. My poor husband.

I'm afraid to go to a doctor who will immediately say "postpartum depression caused by external stress" and slap me on a medication. Because of Bella's immune system, I can't take medications, because I have to breastfeed her. I will not introduce another medication to her, and I will not stop breastfeeding because I'm stressed out.

Anyone else deal with this? I feel like such a jerk. She's doing okay, and I just can't stop worrying. I still have a panic attack when she coughs for no reason, I'm so worried about her airway, even though medically, I have no reason to be worried. She's responding brilliantly to treatment. Some babies don't and their moms figure out a way to cope, you know? Or I take her for a check up at Children's Hospital and see moms with cancer babies. How dare I be upset about what is essentially a birthmark, that will go away one day? But I am upset. I worry all the time, and I sleep poorly and everything other than Bella just falls by the wayside. I don't have any more energy to be a wife, a good daughter or friend. I have enough energy to get her her meds on time, and keep up with our doctors visits. Everything else gets ignored.

I'm just wondering if there's any other mom who is going through this? I should be feeling better as she continues to do well, but I'm just not. And I'm a first time mom, and the whole thing makes me feel so isolated from other moms. And my mother didn't deal with this, it's not like I can call her and ask what to do. But you're all dealing with it, so I'm asking you girls. Anyone have any advice, or feeling the same way?

Let me know, or add me as a Facebook friend, we can chat.

Melanie

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Hannah - posted on 05/14/2010

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I can totally relate. My daughter's hemangioma showed up 4 days after she was born. It has been the scariest thing ever. She has 4 of them on her face. I felt frightened and I grieved like I have never before. Not because of how she looked but because I had no idea how much it will gro, how long it will last, how bad it will get, how will it affect how she'll look when she is older and what it will mean to her to see her self in her baby pictures. The too many questions and the too little answers are too nerve wrecking. Absolute roller coaster that I am still riding and do not see the end of it. My baby is still 5 months old and still going through the growth phase of the hemangioma. Propranalol is not an option for treatment for her (increased risk of side effects).

I hate being out of control.. and this is way too out of control for my taste.. and YES.. so far, it has been the hardest thing I have ever been through..

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Joetta - posted on 11/09/2010

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I can totally relate in the beginning with this Hemangioma I was a complete mess then things got a lil better and I was ok for a while.. Now things are getting hard again and up crying for 5-6 hrs at night or obsessing about doing research online for more info to make the right or a better choice. I totally understand about everything else getting ignored... housework, and even doing things for myself get lost and just never happen... any time u wanna chat let me know

JOetta

Shelly - posted on 03/26/2010

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I know how ya feel. In the beginning I didn't get alot of answers so I was just relying on info from the web and the lil the docs would tell ya. Finally i was able to see a doc who says my sons should go away on its own but the fast growing phase had freaked me out a lil. first dermotogist we saw made it like i just thought my son was hidious, which pissed me off to no end, because the sight of it does not bother me. He is just as beautiful as anything. we just wanted a few opionions to make sure with it growin down in his ear it wouldn't hurt him as he was having ear infections left and right. I just got in the mind set that its just another wonderful part of my son that makes him soo special. Most people don't even ask about it. All they see is his smile

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