6/24.....scary day

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mikeys mom
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Re : 6/24.....scary day

Postby mikeys mom » Sun Sep 17, 638299 5:39 am

Thinking about you guys!

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Re : 6/24.....scary day

Postby amanda » Sun Sep 17, 638299 5:07 am

Hi Nikkole - Mommyboo's Ivylynne had a PVL - her myspace page is: www.myspace.com/6miraclez - I just checked and she is still updating it - maybe you could email her and see if she has some information?

I think of you guys all the time and I am so happy that Ethan is stable now.

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Re : 6/24.....scary day

Postby patty » Sun Sep 17, 638299 3:17 am

999Hugs))) I am so glad that Ethan is stable now! I would not worry about the cp yet. It could be something very mild. I would just keep taking things one day at a time. Will keep you guys in my thoughts and prayers.

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Re : 6/24.....scary day

Postby mada » Sun Sep 17, 638299 2:42 am

Just sending my thoughts to you and Ethan. I cannot even imagine what you are going through. WOuld Chad agree to going to counseling? We all deal with stress differently but frankly, he is being selfish in my eyes. I mean how much can one human handle? I wish I oucld give you a big hug...just know...we are all in your corner.

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Re : 6/24.....scary day

Postby summerw77 » Sat Sep 16, 638299 11:08 pm

Wow. Well, I know my friend that has the 1 lb 1 oz baby was told similiar news, but she had much more severe brain bleeds (bilevel 3 bleeds that lasted a long time) and that's what caused hers, but I will tell you at a year old, she's looking very normal.......she was due the same month as Kade (7 months adjusted) and she's doing almost all the things she should at a YEAR even!!!!!!!! I am glad he's on the regular vent again, how scary! I will be thinking of you 3.

As for Chad, I know that just having a baby and me having all these surgeries has put a huge stress on my marriage, I can't imagine what you are going through and how a marriage handles that. Though I think, in your situation, my hubby would be "you" and i would be "chad". I dont think I could do what you are doing everyday..................I agree, a medal for getting out of bed! Cuz I dont think I would......

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Re : 6/24.....scary day

Postby onesock » Sat Sep 16, 638299 9:50 pm

You and Ethan are my super heroes! So glad that he is stable...how scary for you :( As far as the Chad situation, I am with you, I wouldn't go for that either, especially right now. Remember you have lots of strong shoulders to lean on around here. Keep hanging tough (NKOTB song heehee), you are amazing and so is your little man.
Sending lots of love and strength to you both!!

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jamie w
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Re : 6/24.....scary day

Postby jamie w » Sat Sep 16, 638299 8:35 pm

Where do I begin? I am so sorry that you & Ethan had such a bad day yesterday. I cannot imagine how you continue to go on in spite of all that has/is happening. You deserve a medal just for getting out of bed everyday. I am so glad they were able to stabilize Ethan and I hope that will be his last time to be reintubated. I hope it is smooth sailing from here on out. I do not know a whole lot about PVL but I have read some about it. My daughter has recently been diagnosed with CP so I have tried to read everything I can get my hands on. It is such a devastating thing for a parent to have to hear that their child has/may have CP. It conjours up all sorts of images in one's head that are so painful. There are so many questions and so much guilt. My child's CP is likely also related to placental insufficiency (lack of 02 and blood)and I often feel like I should have/ could have done something more or different to change things. But what is done is done and I cannot go back so I must not spend long in that place that allows guilt to come in or it will eat me alive. I just have to go on and realize that I would have and did do everything I could have and should have and sometimes bad things just happen anyway. CP can be such a range of things and the crappy thing is that until the kids are a bit older it is hard to really get a good prognosis for them. A friend of mine who has a son with spina bifida gave me the best piece of advice I have gotten yet- she told me to try to calm down and that I don't have to figure it all out right now. Unfortunately the CP isn't going away but in a poitive way that means we have forever to figure it out. So try to slow down your thoughts and take a deep breath. You will get through this. As for Chad, well, he is a man. And while that is no excuse, it is the truth. Most of them just cannot handle what women can and when they are confronted with something uncomfortable, they run. I do not know what the solution is but I hope that whatever it is that brings peace to the two of you is what happens. Feel free to email me anytime with CP questions or for whatever you need. I am new at it but I am navigating my way through, I would be happy to help you navigate in any way I can too. (((HUGS))) over and over and my prayers for all of you continue.

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Re : 6/24.....scary day

Postby heather j » Sat Sep 16, 638299 6:56 pm

Poor little Ethan -- what a scary, scary thing to witness. I'm still holding out hope that Chad will choose to turn things around and be there for you as well as Ethan. Thinking of you as always and sending prayers of strength for you and your little man.

Much love,

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Re : 6/24.....scary day

Postby season » Sat Sep 16, 638299 6:52 pm

Wow Nikkole,

What a scary day. I am so gald that got him resettled for now.

I don't knwo anything about PVL - I can imgaine being informed about the possibilites and then watching to see what signs he shows as he develops would be a good approach.

I'ms sorry to hear about your troubles with Chad as well. Many marriages don't make it through the stress that you are and have gone through. If he says he wants to work on things, maybe you can ask him to start with marriage counseling. That way a third party can help you work through issues like your differences and all the stress and emotions you've both dealt with from your loss and now dealing with Ethan's birth. (I am also sorry that he is not there to support you through this trying time.)

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6/24.....scary day

Postby mom2ella » Sat Sep 16, 638299 6:23 pm

So Tuesday was a terrible day for Ethan. They decided that he was ready to be extubated and was put on high flow nasal canula. He did great for the first hour...was breathing fine on his own and was comfortable. He started getting agitated (I was standing there) and I noticed that he started gasping, then he turned blue. They started suctioning him and got a ton of gunk but he was not able to get it out on his own. They had to call the response team, his heart stopped and he stopped breathing. It took 30 minutes to get him re-intubated and back to normal. His chest x-ray looked fine. They believe that it was not a breathing issue, but more about him being too small to cough up all the gunk he had in there. They plan to keep him intubated on low settings now until he's 1000 grams...he's 780g right now. He is very stable right now.

He also had a head u/s that day. Doctors advised us that he has 2 very small IVH bleeds that they are not too concerned about but he also showed a small area of PVL, which is indicative of Cerebral Palsy. Doc said that it was a small area and showed up very late (3rd head scan) so she feels that may be a good sign. Now I am scared to death. She said that it was damage from not enough blood/oxygen in utero, which makes me feel like it's my fault. Anyone have experience with PVL? I looked it up online and got a lot of very scary info. I know the range of disability can be very large, from minor learning disabilities to severe CP. Is it really possible that it can be a minor learning disability long term? Or should I not even hope for that and just prepare myself for the worst???

It doesn't help that Chad is back at his mom's house. He came home for a week to "work on things" but went out 3 times in that week, which is one of our issues. I told him I'm not okay with that and he said he's tired of being told what to do. Seriously, would any wife be okay with that? Plus, he's going out with people I don't even know until 2,3,4am. I feel so alone. He goes to see the baby every day, but I feel like I'm the one handling everything while he's out drinking his stress away.

Thanks for listening!

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