Can I vent here?

flerlgirl

I know I have been a little MIA from this board over the last few months, but I just need a place to put this where people will get it and not tell me how I should feel instead of just listening. 

Some days, like today, I am so so so so tired of having a "medically frail" child. My son (born at 26 weeks and has BPD) is still on oxygen, still on a pulse ox, still can't so much as sneeze without a trip to the pulmonologist. I love him so much and I would never trade him for anything. He has come so far. But I just want to go to the freaking grocery store without having to find someone to watch him because God forbid he be near a germ. I am tired of stepping on medical tape and listening to that stupid machine go off every time he rolls over because he is too big for it but they don't make another size because I guess in their world babies never grow. I want to take him to lunch so my friends can see how cute he is and I want to stop freaking out every time he coughs because I think he's getting sick. I want my friends to stop acting like I'm a crazy, overcautious mother because I tell them he can't go out to dinner or go to their house if they've had a cold recently. 

And I feel super selfish even writing this. It's so much worse for him, I know. And he is doing so well when I know so many others who are even sicker. Today is just one of those days where I realize I haven't talked to another adult besides DH in a week. I think I just feel lonely and even though I know there is no "best" way to be, I just want our lives to be a little more normal. 

Ugh. I think I am being super selfish and ridiculous. I just wanted to get it out somewhere. Thanks for reading. 

Missa_g

Lockdown is SO incredibly difficult. It's okay to be upset and vent, please don't feel bad about it at all. We're here for you and you are not alone.

flerlgirl

Thanks, guys. @bromios, you're right that they just haven't been there. And I would never want them to be. But I wish there was another to help them understand. It won't be like this forever, though. At least I got a super cute kid out of it!

PurpleIris30

I'm sorry for all you are going through. I'm not dealing with all the medical issues you are any more, but can relate on some level because I've only left the house three times in the past two months to limit my babies' exposure, and it's incredibly isolating and no one really understands why we have to be so cautious. Feel free to vent - you are dealing with some tough circumstances.

Kelly_12

Vent away! That's what we are all here for! It's incredibly hard when no one can fully understand what you've been through and are going through. It is very isolating even when you're not on full lockdown because no one can really relate to you.
You are not being selfish with these thoughts at all, being a great mother means recognizing when things are tough, but continuing to push through. If you didn't acknowledge how hard it is and vent it out a bit you'd go mental for sure and your baby needs a sane mama
Hoping things continue to get better with your LO and you find someone besides DH you can talk to. Even if it is an internet stranger

LucyRicardo3

Vent away!! You're not crazy, just being an awesome mom!
I'm also being accused of selfishness/crazytown simply because I won't allow visitors to the NICU, especially if they haven't had a flu shot. For goodness sakes, none of my vaccinated older kids haven't even met their brother yet, due to a temporary change in NICU policy, so why on earth would I allow anyone else to expose him to every flu bug under the sun?

flerlgirl

Usm123 said:

We aren't even on strict lockdown (minus the "sneaux craziness") and I could of written this. Ds2 is still on o2 and there is junk all over and he's tangled in wires and my arms hurt from holding tanks. I mean how many parents have to strap a sat monitor to their kids riding toy so they can crawl and it wheels behind him. Sorry I took over your vent but I've been there so many times. It will get better!

Mi casa es su casa! You can vent! The oxygen tanks... Aka satan's agents of evil.

flerlgirl

LucyRicardo3 said:

Vent away!! You're not crazy, just being an awesome mom!
I'm also being accused of selfishness/crazytown simply because I won't allow visitors to the NICU, especially if they haven't had a flu shot. For goodness sakes, none of my vaccinated older kids have even met their brother yet due to a temporary change in NICU policy, so why on earth would I allow anyone else to expose him to every flu bug under the sun?

Because you are totally saying no visitors because it's fun for you. People can be silly. I hope your big kids get to meet your little one soon!!

flerlgirl

Usm123 said:

We aren't even on strict lockdown (minus the "sneaux craziness") and I could of written this. Ds2 is still on o2 and there is junk all over and he's tangled in wires and my arms hurt from holding tanks. I mean how many parents have to strap a sat monitor to their kids riding toy so they can crawl and it wheels behind him. Sorry I took over your vent but I've been there so many times. It will get better!

Mi casa es su casa! You can vent! The oxygen tanks... Aka satan's agents of evil.

I totally count those things as my exercise for the day. It's going to be a rude awakening for me when he does finally get off. I might have to start an actual exercise regimen. Is it warm enough for walks or something outside? That always helps me feel a little less crazy. I'm on mobile, how old is your little man now?

You can practice lifting Diet Coke bottles instead. It's good exercise and it's diet, so obviously healthy for you. 

For maybe the fifth time in my life it has snowed (I'm in Atlanta) so no walks today. We have been going on walks more recently so hopefully by the weekend we can again! Josh is 11 months actual, 8 months adjusted. Almost a year! Sobbbb

flerlgirl

Usm123 said:

Ha I'm in south Louisiana so I hear you on the random weather! It's be iced, shut down for 2 days and it will be 70 on Saturday. I bet you were "thankful" for lockdown with the traffic jam mess. They get so big so quick. DS2 , a 26 weeker too, will be 18 months on Tuesday.. Wahh. Once flu/cold/ RSV season slows down( if your not off o2) don't let it slow you down. We have done 3 weeklong vacations at the beach, go on the boat all the time ( tank has it's own life jacket), and about normal life. It's helped my sanity during these long winter days.

Yes, I'm sure you are familiar with fun weather patterns that have no rhyme or reason! You're right, I didn't mind lockdown the last few days, haha! I am an expert in staying indoors and not driving anywhere. 

Mine is a 26 weeker, too! 26 weeks ftw. That is great to know about how much you guys are able to do! I am looking forward to running into Target with DS without wearing a hazmat suit and threatening to kick someone if they get too close. Do y'all have any idea if your DS can come off O2 in a few more months? Also have you considered building an oxygen tank fort? Something to think about.... 

jbranden12

I'm having a similar kind of day. ((HUGS))

LaciJaxx

T's and P's!!!!

[Deleted User]

I've had my share of cabin fever thoughts. I would like to add that a lot of family and friends don't understand that we can't just invite them over even if they do promise to wash their hands. I wish it was that simple. I just started sending them rsv articles and telling them my doc isn't allowing visitors. I wish spring/summer would come soon! Hang in there. Just remember its all for that precious baby!

KTZ17

You're not being selfish. Voicing that it's hard having a preemie with medical complications is nothing to feel guilty about. I think most of us preemie moms are getting cabin fever right now, and it must be much worse for those on total lockdown. I hope that you're able to get out of the house soon and that Joshua is off oxygen ASAP. Stay strong, mama. Hugs.

flerlgirl

Usm123 said:

We actually have a pulmno appt today ( if they open the interstate up soon) hoping to atleast get a few hours off. I've been doing my own room air trials and it's been going ok. Any idea for y'all? He learned to crawl this month and he stretched his tubing to the max and his concentrator was rolling behind him! We have to do something. He's also knows how to silence his own sat monitor so that's about useless.

GL at your appointment! I hope they let you guys go off it at least for a few hours! We are looking at maaaybe next month or the next. He has been pulling it off all the time anyway and seems okay so that's a good sign. I am loling about the sat monitor! I go into DS' room in the morning and often times find him holding his pulse ox probe in his hand and giggling. He is so mean. 

flerlgirl

Thanks for the encouragement, you guys! I feel better about it today. I am going to make more of an effort to get out and take walks with DS over the next few weeks and see if that helps. Hope you're all having a great week!

JoJoGee

Lock down is hard.  Medical equipment sucks.  Pulse-ox's are a special kind of hell.

Don't ever feel bad for how you are feeling - that only makes you feel worse.  You have the right to your feelings.  Above all else, be gentle with yourself.

flerlgirl

@usm123, DS is beyond tape now... I think our next step is glue. (KIDDING, for anyone that might think I am serious) But it makes him pretty happy to pull it off so I guess it's a win?