When is it OKAY?

[Chrissie]

Hi everyone, I was just wondering when do you start living in the "real" world again? We finally gave in and went to our 1st family party with Kylie for Easter and everyone was sick, getting over being sick or got sick this week, and of course Kylie got some kind of virus! I get so MAD because everyone knows how careful we have to be, (we don't pay $2500 a month for a RSV shot for nothing) I guess I am getting cabin fever and want some advice from the experts, YOU GUYS ;) I would like to feel "normal" again and start showing off my new miracle baby. We do take her to the doctors office and I am assuming that is probably the germiest place out there? Just wondering when you say "Phew 6 months of freedom" You know until sick season starts all over :( Thanks for any imput.
Chrissie

[sssBiasutti]

I have learned that other people (family and friends), tend to be A LOT MORE relaxed about the possibility of getting our little ones sick. Even though they know the routine, it seems like we're always reminding them to wash hands, to not kiss hands or face, etc. I really don't get it sometimes-:mad:. Either way...we end up staying home, or they do. We've been taking Stella out to places now for the past 2-3 weeks, and so far she's been healthy. Don't get me wrong, we're still very careful about the whole thing, but we feel that the worst has passed. I do agree with you though-it does get very exhausting, and it feels great to go out once in a while.
Stella has one more RSV shot for the season and we're done!
It's nice to see her get all excited when we go somewhere, especially the mall, with all the different lights and sounds everywhere. It's almost an emotional experience for us to see her so happy, taking in the world like she should; like a normal and healthy baby. I can't believe how these little ones are so full of life, after what they've been through. Just so you know, we all feel your pain and stress, I feel like we've been Stella's personal bodyguards all winter long, and it's not over yet. Not only that, I don't think I'll be able to relax ever again, I'll probably end up having some nervous break down or something...:eek:.
All I can say is just to try and hang in there, it will soon be over, and lets hope that Kylie doesn't run into anymore viruses for the season.

Stefano

[Cyndlouwho]

With four older children, I stopped staying in so much early on. We did get the older children in the habit of washing their hands before touching Dylan and staying away from him when they were sick, but it didn't stop him from catching nearly everything they got. Only really seemed to help me from getting everything (except for now..I have managed to catch the latest cold), so I stopped worrying as much and would take him to family things on occasion. He did end up having an overnight hospital stay due to viral bronchiolitis and has had two ear infections, but that was when we were keeping him home from things. I just wonder how much worse he would have been without the synagis shot. Okay, so I just realized I have no idea what my point to all of this is. Guess I just wanted to ramble a bit. Ah well.

Cindy
Mom of Dylan,
Truncus Arteriosus type 2
Coarctation of the aorta

[Heart Mommy]

When we finally got out of the hospital long enough to see the sun it was summer..GLORIOUS summer...That dousn't mean that we didn't totally turn into germa-phobes... I have a small can of lysol I spray on everything including shopping carts. Gator could only go to places with well visitors and we washed his hands as much as ours... It was incredible the looks we got, the people who thought I was crazy, but, who stinkin cares. I demanded respect for the fact that I wanted a well baby. AND. my thing was, if they knew what I did, or if the roles where reversed then they would be doing the same things... Some places we thought were "safe" were the library, park(in car seat), museums, the mall in car seats.. and the list goes on. If you still want to go to family parties... Leave her in her car seat until everyone has washed hands and promise to only stay for twenty minutes.. then if someones is sick... you are not being mean you just have to go...Oh, good luck, it gets better I promise. I still laugh at the time we took him to the 4th parade and the family next to us was smoking and I politely looked at the big guy that was smoking and said... WOuld you mind putting that out so you don't blow up my baby. Gator was oxygen at the time....LOL

[acrathbun]

it's been a while since I've "been there." However, Megan also has a primary immune deficiency so I was fanatical about germs, cleaning, etc.

I do remember that the first 2 years were absolutely impossible - just so, so hard.

It honestly seemed like she was sick once a week and admitted to PCMC w/ pneumonia at least a couple of times each month. It was a nightmare.

I would imagine that many (if not most) of you are living through this part right now.

Megan is my 3rd, so she was exposed to a lot of "coming home from school germs" and I'm sure that contributed. I did do certain things - like having my big kids change their clothes and wash their hands when they came home from school, posted a kindly-worded sign on the door & on her car seat & stroller. She still got sick a lot, but at least the world knew I was serious. :)

I guess what I'm trying to say is that if you can hang on & get through those first couple of years, it really does get much, much easier.

[Alli and Kyle Hicken]

This is so helpful, but along with Chrissie's question, I am going to also add in a few of my own (since we might get to take Grant home for the first time in a few weeks!)... How do you handle church situations, grocery shopping, visits to the pediatrician, etc? He has a very compromised immune system and I have no idea how to handle this with friends and family for the first time! Thanks for posting the question Chrissie!

Alli Hicken
mom to Grant (HLHS, heterotaxy, and then some!)

[acrathbun]

I thought I would try to answer a couple of your questions.

Church - we attend a small-ish synagogue in Park City. Not nearly as many children as some of the LDS churches, so that was easier for us. I would imagine that if I were in your situation, I would strongly reconsider taking a immunocompromised child to church - especially in the winter months. Someone else will probably have a better answer for this.

Pediatrician - try to find one that participates or participated in the Utah Medical Home Project - it's a federal grant project. These clinics are set up specifically to handle children with special health care needs. For example: Megan never went to the waiting room. If they didn't have an exam room open, they would have us wait in the conference room. I don't think that separate "sick" and "well" waiting rooms make much difference - who knows what the "well" child has brought with him/her?

Grocery Shopping - my husband does this at our house, but if our responsibilities were different, I would probably try to go in the early morning hours when the stores are all but empty. Or put the baby in a front pack carrier, so that s/he doesn't touch the cart. We even used a front pack for a little while when Meg had oxygen & a feeding pump. We would just put her equipment in the cart & keep close.

I hope you will find something here that is worthwhile.

Best of luck

[pattysui]

Laurie has chronic lung disease from being on the vent for so long... so we have been EXTREMELY careful since bringing her home last September. The only places we take her are to the pediatrician and other doctor appointments. Until recently, we didn't even go to grandparents' homes. She has not gone to church and our 2 year old daughter has never gone to nursery since we got home. We also have not let her play with any other children. Needless to say, not one of us has been sick this entire RSV season. My 2 year old hasn't even had a runny nose. It has been SO HARD to not go anywhere - family parties, holidays, church, etc. - but it has been worth it. Luckily, we don't have any school-age children, as it would be much more difficult with all the school germs.

As far as church goes... Kevin and I would just take turns going. He always let me go to Relief Society - as it was one of my only times to get away during the week. We did grocery shopping at nights or early mornings - without Laurie.

We're starting to take walks in the stroller and we're letting our other daughter go to the park. But RSV season hasn't quite ended (Hurry, please!) so we won't start taking Laurie places until it's officially over.

Hope this helps! Thanks for all your posts!

[Heart Mommy]

I think it was Chrissie who orginally sent this to me..LOL.. But I am posting it again for Grant's family.

To all my Visitors,

Before I was born my heart was in trouble,
So when I arrived they did surgery on the double
My mom and dad couldn't hold me for a while
They waited by my side and helped through my trial.
I stayed at the hospital until I got better
And now my whole family is finally together.
The doctor said I could get very sick
If I catch any bugs I'll be back there quick.
So if you want to help me in the way that is best
I shouldn't have visitors so I can get my rest.
I'm sorry to ask this and my family is too,
We'd love nothing better than a visit from you.
Please don't be offended it's not meant that way,
I really look forward to when I can play.
My heart just needs some time to get strong,
I can't wait to meet you it won't be too long!


Okay, my response will blow your mind because it is so different from everyone.. We asked our card Dr. Su about so many of these issues. I know that it is dependant on each child so maybe you could just ask your Card. Dr. Su advised us that we should allow our child some exposure to things. He said that if we don't, when we do finally allow him to be exsposed to things he wouldn't tolerate it well because he had no antibodies to fight things off with. That doesn't mean we took him to places we knew sickies would be, but we did take him tons of places and tried to allow him as many chances to have a "normal" baby life. It took us a long time before we allowed him to come to church. Also to ease us into it, because EVERYONE will want to see your miracle.(people want to see the amazing child they have been praying for) we would leave at the closing song of Sacrament. We finally went to full Sunday's after the Glenn. He didn't start nursery like other 18 month olds... He started at 22 months and still hates it. I watch when I drop him off for snot noses and coughs.. I just take him with me if I see any.
I took him to the store all the time.. I loved the store... I had a baby bjorn that I wore him in. I also had a sling. It was a life saver.

The thing that is so funny is that the little grandma's want to see your baby. They are soooooo inquisitive and want to touch him. I usually would say"ooooh, thank you, I'll give you a sneak peak if you don't touchy touchy" I have had some funny ladies give me crusties about that, but I didn't know what else to say. :D

Once again. Good luck you guys.. The summer months bring alot more oppertunities for outings..

[MatthewsMom]

Our little Matthew also has chronic lung disease due to prematurity/prolonged intubation. Until last week, we only ever have gone for walks outside on nice days and to doctor/therapy appointments. I always request the first appointment of the day for all of our visits, that way we are alone if we have to be in the waiting room. If it is impossible to get the first appointment (ie. cardiology never seems to give the option), I always make sure that the receptionist knows about Matthew's fragility and accomodates in whatever way possible. Our pediatrician's receptionist always shows us to a room right away, and there are other offices that do the same. At PCMC Radiology (we always seem to be needing chest x-rays...) I wait in the back waiting room, which is usually emptier. Also, at all these places I keep Matthew as covered as possible, usually with his car seat/stroller combo with a blanket over it.

We have made a big deal of emphasizing the importance of keeping Matthew healthy on our carepage and in other conversations with friends and family. Anyone who ever comes to our door is asked if they have any kind of sickness at all. We also keep Germ-X in almost every room in our house, and we make sure we and everyone else uses it frequently. Sometimes we have had to explain to people what "sick" means, as it seems that some people (family included!) do not think they are "sick" when they just have a cough or a runny nose. That is the very thing we are trying to avoid! Some have explained their coughs and sneezes and runny noses to be allergies, but I do not take any chances. I am probably a little extreme (some of our doctors have seemed to think so), but I will go to any lengths to keep Matthew out of the hospital! We have missed out on a lot of fun stuff, but I really think it has been worth it.

As for church...he hasn't been yet, and he will be one soon. We found another ward in our stake that meets at a different time and one of us goes to Sacrament Meeting in that ward and then the other goes to our own ward later. We rotate every week, and we have been able to hold callings this way. It has worked out well for us, and we both get the spiritual uplift every Sunday, at least to some degree. We also do our grocery shopping and other errands when one or the other of us can stay home with Matthew.

Just last week I started to take Matthew out (still with his car seat covered most of the time) to Home Depot, Babies R Us, etc. Everything was fine really, but come to find out he had contracted Influenza B the week before and now he is in the hospital, even after all our precautions! Luckily the course has not been too severe and the end of the season is in sight. Since being in the hospital again, I have been very mindful of our surroundings, trying to keep things clean around him, and I have been very vocal about my concerns with infection control to each of the nurses caring for him. In the PICU, we were paired with an RSV patient - NOT a good combo! - but it ended up being the best possible combo, unfortunately. I discussed the issue with the charge nurses and doctors and they did a really good job of listening to my concerns and passing the word along to each oncoming nurse. Even though I am sure that the majority of the nurses practice standard precautions on all their patients, they have made an extra special effort to do so in the challenging situation of having two infectious patients, both requiring gowns, gloves, and masks. I have asked plenty of people if they have washed their hands before they do something with Matthew, just like they encourage parents to do. All of the nurses, especially charge nurses have been very accommodating in making sure we have the best possible room assignments and keeping things clean, etc.

Long post...hopefully some of it is helpful! :) Good luck!
Ashley Steed - Mom to Matthew (TOF - repaired, other issues too...)

CarePage: MatthewSteed
samuelandashley.blogspot.com

[Chrissie]

Thank you so much for everyones input. I love the one that says when it comes to family a cough or runny nose is just allergies or it doesn't apply to them. I still don't fell comfortable going out much, we tried church for the 1st time and OOOOPPPPSSS it was very busy and everyone was still coughing, now with the crazy swine flu and chicken pox outbreak I don't know what to think. Just wanted to say Thanks for everyones advice. You guys are GREAT!:)