# Support needed :(



## claireb (Apr 7, 2009)

Hi mamas










It's nearly 2 AM my time. Tonight has been a HORRIBLE night.









We're getting our kitchen redone tomorrow...yea.









So in preparation, we have to empty out our entire kitchen, cabinets, refridgerator, everything...

Tonight, my sis (who's an RN and is AWESOME) came over to help me with the babes, who are BOTH teething and extremely fussy if they are put down right now. I couldn't have gotten anything done without her, because they literally will not be put down, and won't even tolerate being in the ERGO or any other carrier. They are miserable, if it weren't for Tylenol and also some TLC by my sis.

So, I'm working on the kitchen. My hubby is at work, working on a late night project that has to be done by tomorrow. My sis puts Noah to bed (he's finally off oxygen again) and then, about 11:00 puts Ryan to bed, on his oxygen.

About 12:30 (1 1/2 hours after he went down), I heard him coughing, or gasping, or something...I went up to the nursery (THANK GOD) and realized that my sis had put him to bed without changing his oxygen, which was totally OUT. Who knows how long, but probably for a LONG time.









My sis would DIE. Literally, she would DIE if I told her that she forgot. She loves these babies to death.

My poor baby was blue...grey, blue, limp, when I walked in. He wasn't completely unconscious, THANK GOD, and I immediately performed CPR and rescue breaths on him, as I completely PANICKED and screamed at the TOP OF MY LUNGS for my husband. He ran upstairs, and got a new tank...

Ryan is okay. As of now. He is okay, pinked up right away, within 30 seconds to one minute of being on a new oxygen tank, he was okay...

But I feel like I am literally THE WORST MOM ON EARTH.

I hate myself. HATE HATE HATE HATE HATE myself. I have no stronger words. I am THE WORST AND MOST irresponsible parent ever. I do not deserve these babies.

I need some support. I hate myself so much right now. I can't believe my angel baby Ryan almost died on my watch.







In some ways, I wish he were back in the hospital, so he wasn't my responsibility...when a child's LIFE depends on having oxygen, it's a HUGE HUGE HUGE responsibility, even when you try your hardest. It's amazing what stupid stuff can happen.







I am the biggest piece of CRAP that has ever called herself "Mommy".









Thanks for listening.


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## fazer6 (Jan 26, 2009)

Claire jees after all you've been through to get to this stage with 2 live babies and some bit of sanity I think you're amazing. Come on you have given birth to 2 sons. You kept them alive and you continue to do so. You heard there was a problem and you dealt with it. Do not ever think you're irresponsible, you're doing a fantastic job. Yes your sister made a bit of a slip up, but everythings fine now because you, the super mom, managed to cope.

You've been through so much and become so strong through it all, I think that alone makes you a superb parent. What more could a kid need other than a loving caring and strong role model as a mom?


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## LiLStar (Jul 7, 2006)

Oh my goodness! How absolutely terrifying that must have been for you!







I can't even imagine. But from the sounds of it, you did everything right, and saved your baby's life. Sounds like a darn good mommy to me!!


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## *Jade* (Mar 13, 2007)

Quote:


Originally Posted by *LiLStar* 
Oh my goodness! How absolutely terrifying that must have been for you!







I can't even imagine. But from the sounds of it, you did everything right, and saved your baby's life. Sounds like a darn good mommy to me!!























Ditto all of this!!

My babe is only 10 days old, but man, that feeling of being the one keeping him alive weighs so heavily and he has no medical problems. I can't imagine how stressful it must be for you


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## WaitingForKiddos (Nov 30, 2006)

Oh Clare, I saw your FB too. You aren't a bad Mama.







You had a normal parenting wacky scary moment and you reacted SO well! I'd have been so flipped I don't know if I could have done the rescue breaths. You kept those babies alive against ALL odds.

IMO these rainbow babies are so extra scary. I'm always listening to William's breathing...sure that his normal newborn gasps will lead to SIDS. Last week I used the front pack carrier for the first time. I guess as I plopped him in it his leg didn't go through the real leg hole but went off to the side. 15 minutes later the poor baby just flips out doing a cry I'd never heard. I go to pull him out and see a blue leg thathas a red ring around it where the carrier caught him up. I can't imagine how much it hurt. Total bad mom. I just appologized over and over to him and now I'm so very careful to check his legs in a mirror.

You caught the issue and your mama-senses kicked in when you heard something off. That makes you a SUPER mama!

So much love Clare.


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## MCatLvrMom2A&X (Nov 18, 2004)

how terrifying







but I think you are being way to hard on yourself right now. Yes a mistake was made but life is full of those and you learn from them. Be gentle with yourself mama


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## expatmommy (Nov 7, 2006)

The reality is, you _saved_ him while he was on your watch. Nothing less.

It is terrifying to think that something might happen to our rainbow babies. Our hearts have been opened to a much bigger possibility of loss and pain, and that is terrifying.


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## jtrt (Feb 25, 2009)

Claire, I am so sorry you had such a horrifying experience. I am a nurse, too, and I can only imagine how your sister would feel if she knew.

My first thought is, do you have a concentrator in the home so you don't have to bother with tanks while you are in the nursery? I know you will need tanks for outings but a concentrator in the home would be a big help.

You are not a horrible mother and you DID save your baby, like pp said. You are doing an excellent job caring for your sons and they are lucky to have you. Hugs to you...

Amy


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## crayfishgirl (May 26, 2009)

When I was a completely new, overwhelmed, and scared mama to a full-term+ babe without health issues, a friend's mom told me that I "was the best mama for my daughter, and exactly who she needed to grow and thrive". This is true in your case too....you are exactly who your precious babes need, and you are doing a wonderful job.


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## claireb (Apr 7, 2009)

Thanks you mamas!! I am so frustrated--had a WHOLE LONG post reply typed out after days of not having internet access (having some renovations done on house and NOTHING is working!!) and I lost it when Noah accidentally stepped on my keyboard.

Ugh.

Oh well, now I don't have time to repeat the long reply, so a short one will have to suffice!

You all are the best. I'm feeling better about things, but it's still so hard to shake the feeling of TERROR about the responsibility of taking care of such a sick child. Literally feeling like his life is in my hands, and KNOWING that this is not an irrational fear--he could actually die without oxygen. Scary.









But I'm doing the best I can. I keep trying to remind myself of that. I'm not perfect, but I'm trying my best (except I SHOULD be perfect







That's what the "other/evil" side keeps saying).

I so so so so so appreciate your support. Thank you so much for helping me feel better about myself when I felt so low.










Claire


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## claireb (Apr 7, 2009)

Quote:


Originally Posted by *jtrt* 
Claire, I am so sorry you had such a horrifying experience. I am a nurse, too, and I can only imagine how your sister would feel if she knew.

My first thought is, do you have a concentrator in the home so you don't have to bother with tanks while you are in the nursery? I know you will need tanks for outings but a concentrator in the home would be a big help.

You are not a horrible mother and you DID save your baby, like pp said. You are doing an excellent job caring for your sons and they are lucky to have you. Hugs to you...

Amy

Just wanted to address this specifically, and thank you for the suggestion. We DO have a concentrator, but unfortunately, due to his extreme prematurity, Ryan has some sensory integration problems right now, and the concentrator is so loud that it terrifies him and he just screams without cease. So we can't use it--we have to use the tanks. The larger tanks aren't a problem, they easily last us 12 hours each--but they DO require changing.

Of course, the few days we did use the concentrator, that wasn't without problems either--it just "turned off" twice from being overheated, and I woke up to a baby in respiratory distress. In many ways, I prefer the tanks, because I don't feel like they're prone to mechanical problems. Of course, they're prone (instead) to human error on occasion.

I guess the answer is that there is NO perfect solution. I just wish my babe weren't so completely oxygen dependent. I would breathe such a sigh of relief to know that, even if he didn't have O2 for awhile, he would be okay...but he isn't. He is only on 1/2 (sometimes 1/4) litre, and sats in the mid to high 90's, but once he's on room air...drops to the 60's within minutes.

So so so scary.









Thanks for the suggestion though.


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## momz3 (May 1, 2006)

you are NOT a bad mother. Personally, I think you are doing great. You have TWO little ones. I don't know how that feels but I know the feeling of not giving yourself enough credit.

I also wanted to say, about the teething, my baby girl is teething and her Amber teething necklace has worked wonders. You should look into them (or Amber bracelets) for your boys.

Stay strong, mama!


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## scarletjane (Feb 4, 2009)

I don't know how mamas with twins do it. I really don't. Having just one newborn is difficult, but to have two and then on top of that to have two with extra needs... wow. That is a lot to handle. I think you deserve a lot of praise.

And I think the most important thing to remember right now is that you saved your son's life! _Saved_ his life! That is heroic.

Sometimes we all just need to see ourselves through the eyes of others. I hope these responses to your post have helped you to do that.

You are doing a great job, mama.


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## namaste_mom (Oct 21, 2005)

Claire, I just wanted to offer support (((HUGS))) I can't possibly know what you are going through but I just want to say that I'm here, thinking about you.


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## baileyandmikey (Jan 4, 2005)

(((((Hugs)))))))))


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## 2boyzmama (Jun 4, 2007)

SO scary, I'm SO SORRY that happened
















Would it be worth it, for your sanity, to have a pulse-ox and monitor for him when he's sleeping? When Connor was a baby and his laryngotracheobronchomalacia was so bad, plus his reflux, and he was aspirating his own secretions, I drove myself insane with lack of sleep because I was so in-tune with his breathing that I woke up if literally only 3 seconds went by without him breathing (his breathing was very loud due to the malacia) I always slept better when he was in the hospital because he was on monitors. I finally asked for one at home so I could sleep.


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## claireb (Apr 7, 2009)

Quote:


Originally Posted by *2boyzmama* 
I always slept better when he was in the hospital because he was on monitors.

ME TOO!!! I hate to admit it (because I don't want my child in the hospital, obviously), but it's so much less stressful for me when he IS in the hospital, in some ways, because the responsibility of his care isn't in my hands, and he's on continuous monitoring (with a nurse to double check his safety).

I do have a pulse-ox, and I use it as needed, but the pulse ox probes burn holes in the baby's delicate skin--did you not have this problem? My pulmonologist told us not to keep him on continuous monitoring at home because the probes will burn their skin...which they DO--I've seen it happen...they look like little cigarette burns









So I feel screwed no matter what I do...I don't want to burn my children's skin, so they are in pain and get a skin infection, but I also don't want them to run out of oxygen.

The "solution" I've come up with, for now, is instituting a 300% check--meaning we check 3 ways. Each time we change oxygen, we have to check the actual flow coming out of the tank (by putting finger up to tank, making sure we feel pressure). We also check the gauge. Then, every hour, I have a cell phone alarm set to get up and check the gauge again. I'm getting ALMOST NO sleep, but at this point, he hasn't gone without oxygen again yet.

Of course, I'm also dealing with leaky tanks. I need to talk to the doctor and see what other options we have. It's so very stressful worrying about him 24-7. I never feel totally secure that he's okay.

Add to that, he's teething, so he's begun pulling his oxygen tubing out of his nose, despite how I tape it down to his face. The other night, he pulled it off of his face despite SO MUCH TAPE that it actually made his tiny little face start BLEEDING (








) and yet he still pulled it off. He is a determined little bugger.









So now I'm also getting up all the time to make sure he's still got his tubing in. PLUS, we have to swaddle him almost 24-7 to keep him from pulling tube out. Tried using infant mittens, but he's so talented, he can pull tubes out even with mittens on AND the amazing amounts of tape. UGH!!!









So the poor baby is miserable. He's teething, and can't put his hands in his mouth, because he has to be swaddled all the time to prevent him from pulling his oxygen out. This child is his own worst enemy.

This mama is totally stressed out, too...I wish I could REASON with him!!

Anyway, thanks for caring mamas!! I love you all!

Claire


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## ecstaticmama24 (Sep 20, 2006)

Claire, that must have been terrifying. It is amazing how much work those preemies need (especially with oxygen needs).

I can tell you're a good mom though, with everything you've wrote that I've read, I know you're a good mom.

I think about you a lot, hope you are doing okay.


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## Emerging butterfly (May 7, 2009)

Hi sweetie...

I haven't been here in a long time...but when i saw your post I just wanted to squeeze you.

Your not a bad mama...not negligent at all. Things happen...we all feel terrible when they do. When my eldest smashed his brain riding his bike home from work, I felt like the worst mom because I hadn't picked him up....and I could have...and he had asked me to....and...I didn't. I told him to ride home...and now, he will never be the same. ever. But...I'm not a bad mom. It wasn't wrong of me to tell him to ride home on his bike. It sucked that he didn't wear his helmet. It sucked that he put his helmet on his backpack instead of his head. It SUCKED. A mistake he can never go back and correct. Life altering. Accidents happen. They just do. Ryan is o.k....you found him in time...but even if you hadn't...sweetie....you still wouldn't have been a bad mom. (hug) I'm so glad you found him. SO glad! (Hug) Don't beat yourself up....instead, remember that you found him...and that he's o.k.....and so are you.


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