People Don't Understand

My daughter was born 24 wkr - 1 lb 6 oz in April. We came home in July - no oxygen, just monitor. She has done so well. She is now creeping up on 13 pounds. She gets the Synagis shots & I have made every shopping to include even grocery shopping. We have limited visitors. With the holidays it has been very difficult. But my family (I can sense) thinks I am too overprotective. I don't really care what people think - but wish they understood how serious this is.

12 Replies

  • In reply to aprildanl:

    Re: People Don't Understand
    If it makes you feel better, my 26 weeker turned 5 this winter......and I still don't take him to church in the winter. There are no "sickness rules" like at preschool. Better safe than sorry.

  • OK To Be Protective
    I'm glad that you care so much for your daughter, because it shows that you LOVE HER :smile: Only parents of preemies can fully understand your experience. Our son also came at 29 weeks too (he'll be 12 in June), and still gets respiratory illnesses. As a parent it's YOU that knows best so stick with your gut instinct!
  • My twins were born at 28 weeks... They were 2 yr old Dec 7th. This was our 3rd Christmas and we did do the family thing... however, I am still against grocery stores & church nurseries during this time of year! We got SOOO much greif from our family the first 2 winter seasons that we had them home... so weird that it's family who seems to give us the hardest time! I do remember how very hard it was to be cooped up, but it is way too worth it! We befriended a family whose twin girls were born at 30 weeks a few weeks after our guys were born and we were discharged from NICU around the same time. One of their twins got RSV about 3 weeks after they got home and she lost the baby! It's just not worth the risk! Stick to your guns!!!!!

  • If at all possible you should keep baby at home
    My baby Trey is 7 1/2 m old he was born at 29 weeks. We live where it snows alot and it's cold, I don't know if that makes his chance of getting sick worse or not. We don't take Trey out anywhere, at least the last 2 months) except to the Dr. We surrered finacially while he was in the NICU for 2 months so compared to that this is nothing. The last thing I want to happen is to have to take him back into a hospital setting and not have him at home with his family. RSV and other illnesses can and have resulted in many deaths of premies. Both my husband and myself have cut back hours at our jobs so that one of us can stay home with him. My husband even lost his job because of it and now has another job but we would rather have a well, happy baby than a new pair of jeans. As long as morgage, food, and utilities are paid for the extras will have to wait. Anyway, your family and friends don't understand because no one can unless they have had to have there baby in the NICU.
  • Re: people don't understand
    I also have a 24wkr. He was 1lb 4oz. born oct.05 came home feb06. I think this is very personal to everyone here. It truely depends on what *you* FEEL is best for your child. So it doesn't matter what other people feel. My son has had his shares of trouble, but I don't have the luxury to be able to stay home, he had to go to day care. He got pnumonia. I felt awful, like I had failed him, but once he was better, he went back. He is now almost 16 months, and I've noticed that if he startds getting wheezy, I start back up on albuterol nebz. pulmacort. Flovent. I just keep on top of his breathing, and daycare watches his resperations. I don't feel like I'm putting him in danger, I take him to the store, everywhere unless he is obviously sick. I also have a 3 yr old. So for my own sanity I cannot stay home all day. I do understand, and I just think each child is so different in what they can and cannot handle. It's just up to you to recongize it. Good Luck!! :sillygrin:
  • Hi! My daughter was born 15 weeks early. She has been home almost a year and she is now 15 months. She still gets all of her shots every month. I am still careful with her but I have gotten a little more relaxed with her. We still wash our hands constanly and no sick people around her. I do not take the risk. I do take her out more to visit family and go to the park on nice days. I understand completly... Do not feel bad if people do not understand you are the parent and you know best... Good Luck!!!
  • Donna,
    Yeah - we get that a LOT, especially from family ironically. One day his lungs need supplemental oxygen - the next he doesn't so he must be *cured!* That means bring on the sick kids, bring on the restaurant play pits, all of it. We now just love germs.... you know, since he's not on oxygen anymore. Ugh!!!! Yes - like you said, he IS so healthy BECAUSE of how diligent and careful we are with him (like I'm sure you are with Alex!) not in spite of it!

    What I do NOT want is for Lorne to prove them wrong - and him end up back on oxygen after a respiratory problem showing them that he's not "fixed"... I'd so much rather just roll my eyes behind their backs. As if I have the choice, I know, but this is one time I do NOT want to be able to say, "I told you so!" :)
  • Re: People Don't Understand
    It's so funny that you said that "people think he's fixed". We get that all the time about Alex - "But he *looks* good"....

    They don't understand that he looks so good because I'm a nut about keeping him healthy!!!!

  • I agree with Laurie - people don't understand... and they won't. You can just do the best you can to protect them and, quite bluntly, worry about others' feelings later!! When your little one is bigger and healthier. Until then, her health is the MOST important!!

    We're two years in to this and *still* not everyone gets it. My boys struggled and Lorne was on oxygen for almost exactly two years... now that he's off, people automatically assumed he's "fixed" and we no longer need to be careful - so we still do some reminding. :)

    Take care!! Stay healthy!!

  • Thank you!
    I appreciate your replies. Sometimes I feel like I am being overprotective. We also have a toddler - so it is a very frustrating situation!!

    I am trying to do the right thing - I do not want to see the baby back in the hospital!

    Thank you both!
  • Re: people don't understand
    And they won't.......not unless they have delivered a preemie too. I am with Darcy, stick to your guns. Never have doubt, follow your motherly instincts. It sounds like to me that you are doing a wonderful job 'keeping your little one GERM FREE' :wink:

    Don't let your guard down and please don't pay attention to anyone who thinks your 'overprotective' Just to let you know.....there is no such thing as 'over protective' :sillygrin:

  • Dear 24 week mom,

    You're right... it's very serious business. And unfortunately, the stakes are too high to have to fold under pressure. it sounds like you are doing everything right. rest assured that *we* understand. And, as a mom who is a few years ahead of you, I can promise it gets better.

    This was our 4th Christmas - my son is 3. But it was the first one in which we attended the family gathering. It was worth the wait. Finally this year I felt like Logan was strong enough to handle the "crowds" (aka, school-aged cousins in PS).

    Stick to your guns... come and find strength in numbers here. You will find there are many, many other families making the difficult but responsible decision to keep their fragile children home.

    Wishing you happy holidays and steadfast resolution. ;)