Protecting Our NICU baby: Our Strict Home Rules

okay amore so welcome to a new video and this video is crazy because we want to explain how difficult it is uh uh have a preemie by the way this is what we do we don't suggest anybody to do what we're doing but for a little bit what they told us to the NICU the doctors other thing and then of course you can to be extreme or you can be mellow or you can be easy basically the difference between having a preemie and what we have to do with him versus if he was born full term you know in the guidelines that we've been following yeah so probably the biggest difference is having visitors since he's been home probably if he had been born full term we would still be super careful and not want him to get sick and try and make sure people who come visit aren't sick but because he was born preterm even though he looks big now his lungs are still underdeveloped and they won't catch back until he's two three even four sometimes so we have to be extra careful so we personally made the decision that we haven't had like anybody come visit him yeah go out your mom came to visit but that's it that's it yeah um so we are just trying to be super careful we talked to several doctors in the NICU they all had sort of like different guidelines but they definitely said at least two to three months to be super careful because they told us stories of you know people leave the NICU they take their baby to the store to the church to like the park to wherever and the baby gets sick and they come back in the hospital yeah i think we don't want to go no because it's a it's a statistic because they say the first year a preemie go back home it's 50 percent they can go back to the hospital correct yeah i don't remember exactly the percentage i'll look it up and i'll put it here but it's a high percentage of rehospitalization all right so waking up it's waking up yeah it's a high percentage of rehospitalization and we got out of there we don't want to go back in so even though it's very difficult and it might make some people upset when we say hey you can't come right now we have to do what's right for him and protect him so that's been a little bit difficult because we want to show him to our family and our friends and everybody but of course so now you go to the dark you don't go to his room now i'm gonna try really dark a disney song for daddy okay alessa's feeding lorenzo off to the side but we're gonna keep going because he did not settle for a nap until we warmed up his bottle and then he passed out for what it is like we're talking about we're trying to be very very careful and not exposing him to any illness even when we have to take him into the doctor because he has lots of appointments that he has to do it's very difficult to make sure we avoid all the other people so alessio will keep him in the car until they call us back and i'll tell him to come in or we try and seclude ourselves to one little corner of the waiting room we're just trying to be very careful because like we said there's a high probability that he could be re-hospitalized if he gets anything the hard thing is the hugs and when you go grocery because people don't know that yes or some kids go visit lorenzo when they really want to see the baby some kids and then right because kids you know obviously uh have spread more illnesses than anyone else because they're like in daycares and school and camp and all these things so we just have to kind of seclude ourselves right now and we think that it's difficult but it's going to be worth it in the long run because we don't want to we don't want him to get sick which just we have to do what we have to do some other things that are different is that like we've said in the past we are basically following the NICU guidelines that they gave us and we brought them home with us so one of those things is for pumping we are cleaning and sanitizing the pump pieces the bottles everything very regularly i know a lot of people it's popular to do the fridge method that's what it's called it's where you take your pump pieces and you put them in the refrigerator when you're done and you bring them back out so you don't have to constantly clean them i wish and i it's yeah that might work well for older babies but definitely while he was in the NICU they said no because the risk of bacteria is too dangerous and even now we don't feel comfortable with it because he's still so fragile with his immune system and we're just having to wash and sanitize you know constantly it's like always running even if we did the fridge method one thing that i can it confuses me is like they say don't mix cold milk with warm milk that's freshly pumped but if you bring your pump pieces they have cold milk still on them from residue then you're pumping warm milk in it you're putting it back in so i'm just not sure how it works it's better to just you know not take the risk another thing that we're doing is we prevent diaper rash with him we know his skin is extra fragile we did a video it was a short video where we were like oh my gosh the amount of cream that we have to buy is outstanding and every yeah because guys cost 13 one two yeah and you're going on in three days three but four days yeah so and we are cheap when we put it yeah we're not like yeah in the NICU they were more aggressive like frosting a cake like a frost yeah but again it's more important that we protect him from any potential issues so that we don't have to deal with the consequences later and even on the cream i just want to say one thing because everybody was like oh you only do it when he has a rash you don't do it before hold on a second uses helps treat and prevent diaper rash it's right there on the tube so it's preventative okay you use it to prevent prevents relieves this is the one we've used recovers so yeah we don't say that is what you need to follow but we like to follow like we said everybody can do what works best for that a lot you know uh it is pricey we do this because make us comfort to not have a rash to the range because i think he's still fragile because i notice sometimes yeah and if he got a rash and he got little sores open sores and stuff it's something that we don't want to deal with so it's better to just try and prevent it and go from there yeah another thing is like the NICU nurses we chart everything for him i feel like one of the things that NICU parents in general bring home with them is tracking everything because you're so worried about them growing consistently you have to make sure they're getting the exact correct amount of milliliters or ounces of milk for their body weight you have to track you know everybody tracks wet diapers and just to make sure that they're not dehydrated but we've got it down to like by the minute what we're feeding him and basically we write this down and then i'll transfer it to the app that we use so that we can see and break a big picture of what he's doing but we have to know how much milk he's taking in how much milk i'm pumping so that we know if it balances with what he's eating because he has to grow he has to grow well let's tell the story even because we met we wake him every day right but you need to explain why we're doing this because he was taking formula uh explain why what he said we need to do the routine now but in the same explain about the formula and why we charting and why we start with him every day yes so we've charted from the beginning when he came home but the weight we weren't tracking every day what happened is he came home on fortified breast milk so i pumped the breast milk we put it in his bottles but we had formula that mixes in to increase the calories so that helps him grow faster and more from 22 calories 24 calories no 20 calories to 22 and then if you add the fortification for him he was getting two extra hours not much no much no however he does not tolerate it well at all it gives him incredibly severe reflux and he is arching his back he's screaming he's crying he's so uncomfortable and so we decided to just kind of test it by reducing the fortification to see if it helped him and our doctor said yes let's see if it helps we were still giving him half bottles here and there it got better but it was still every time we gave him one of the fortified bottles every time we give him one of the fortified bottles though it would be 10 times worse than if we just gave him a breast milk only bottle but that he still has you know some spit ups here and there he's always uncomfortable when he has to burp but it's nowhere near what the fortified bottles were so we just decided to cut it out completely and test to see if we could get him at a stable level it has been a night and day difference and even the formulas we've tried two different ones that are designed for preemies and one is supposed to be hypoallergenic good for if they have a milk allergy or reflux and colic and things he does not tolerate it well it might work for others but not for him so we've taken it out but because we took out those extra calories there's a lot of pressure to make sure that he's growing consistently and they want to see him growing 30 grams per day so we're tracking his weight daily most people can ask you right now every day why are we doing every day instead of one time a week in order to make sure that we are balancing we remove those calories from the fortified milk so we have to increase the milliliters of breast milk that he's getting and in order to make sure we're getting enough of that we need to know what his weight is because there's a calculation that you do based on his weight how many ounces or milliliters he gets as he grows a little bit we have to adjust that we've been doing it for about a week and a half right yeah and he has averaged 35 grams per day yeah over the course of this time if in the next two weeks he gonna maintain his speed we are more comfortable and we start waiting maybe once a month or once a week but right now it's crucial to know if the because what we saw a lot of babies get readmitted to the NICU again for failure to thrive which just means that they're not eating well and they're not growing well so our biggest challenge right now is just avoiding going back we don't want to go back all of this might sound crazy i don't know it's just what is making us feel comfortable in the moment it's what we feel like we need to do to make sure that he is growing well and he's healthy obviously again like we said everybody can do what they want to do but this is what makes us comfortable and just because it's craziness doesn't mean that it's stressful you know we've got our routine and we're enjoying every moment with him it's already going too fast so we're just trying to soak it up but we're enjoying so many moments like funny moments with him we love his little bath he loves baths so he gets so calm in the water it relaxes his muscles which is good for his it's trying to do his burp it relaxes his muscles which i've noticed that he gets kind of tight and tense when he had all the reflux because he was like so uncomfortable oh we think it's so funny because when we wake him up he wakes up for his feeding he does the same position every time right in the morning it's like he does alessio calls it superman because it's like and then and then oh yeah like and then he's the same exact thing every time it's so funny we're enjoying every moment and we're just very grateful that we have him here at home and we can do all these things to make sure that he's happy and healthy