Quick updates first! Evan’s lacrimal duct surgery went well, and it seems like it worked! They don’t give you an official “it’s fixed now” until you are a month post-op, so we will know next week! But I think it looks great! Hopefully this means the end of our MRSA woes. They did not do his ears that day because of scheduling issues, but that is okay! It’s not a pressing issue. The new helmet is also working out for us! We have had no skin issues, and Evan has been able to wear it to sleep without issues in his breathing. Huge praise! He also is finally on the growth charts! We made it to the 2nd percentile this past week for weight! And we got our first tooth!
I haven’t written in almost three weeks, and it’s mostly because this was the post I had planned. Being in isolation has been a touchy subject at times because this is the part of my version of parenthood where I feel the most misunderstood and maybe even judged a little.
First I want to make it known that we are not outright germaphobes. I mean, am a firm believer in the five second rule after all. We don’t keep Evan from the world because we are overprotective. We keep him from the world to keep him alive. We are doctor ordered into isolation for the entirety of cold/flu season. In fact, we had an appointment last week to get our last RSV vaccine of the season, and I asked when we would be able to come off of heavy isolation. We have to stay on it through the end of April. Doctor ordered. Not a personal choice.
So what does heavy isolation look like? Well, a lot of me and Evan hanging out by ourselves in the house. We limit visitors and we have strict rules for who can come in the house and in what state: must have the flu shot, all vaccinations must be up to date, and must not be in any way shape or form sick. This includes seasonal allergies. We can’t trust that someone’s scratchy throat or small case of the sniffles is “nothing.” Because nothing to you, could be life or death to my son. When people come in the house the first thing they must do is wash their hands just like when we were in the NICU. If someone holds him, they need to have a clean shirt on that hasn’t been out in the cesspool of germs that is public spaces. Evan only leaves the house for doctor’s appointments, and when we go he is covered up in his stroller so strangers can’t see him so they will be less tempted to try and get in his business. Of course, that doesn’t stop everyone, and I have had to “educate” some people in elevators or sidewalks about not coming near a baby you don’t know. Especially one who has multiple tubes and wires coming off of him and a giant stop sign hanging from his stroller.
Our rules extend to us too. We don’t expect others to follow difference guidelines. When Alex gets home from work before he comes near Evan, he washes his hands NICU style and changes his shirt. If I go out, I do the same exact thing. Half of the time, I take it even further, and I shower and completely change my clothes. If one of us gets the sniffles, we limit our contact with Evan as much as realistically possible, and we wear a surgical mask. I’ve had to do this twice since we brought Evan home from the NICU. Once was a few weeks ago when allergy season started, and the other time was two weeks after we brought him home. That time resulted in two separate six day hospital admissions for Evan. Like I said, what may be just the sniffles for me and you is life or death for my son.
This is why isolation is important. While a “typical” or term baby/child can usually handle his/her first few colds without any medical intervention, my child is pretty much guaranteed an emergency room visit and a hospital stay. At baseline, Evan has difficulty breathing. He is on oxygen therapy. He has Type 3 Laryngomalacia meaning his airway will collapse at times when he is trying too hard to breathe. He also has a weak swallow reflex and can’t handle simple secretions like his own spit, add in some extra mucus, and it’s a disaster waiting to happen. His lungs are underdeveloped even at 10 months of age. They have not caught up. His bronchial tubes are more narrow than those of a term baby. This is why it is so incredibly dangerous for children like Evan to get sick.
This is also probably why we find ourselves feeling so misunderstood in this aspect of parenting our sweet Ev. If you haven’t been a preemie parent or parent of a medically complex kiddo, there is no way you would know or understand any of these things. So here I am to explain it as best I can. And if you’re on our care team, and you see a mistake here, please email me so I can fix it!
Premature babies born at 34 weeks gestation or fewer, have significantly underdeveloped lungs. It takes a long time for these babies’ lungs to catch up. Just because he/she is cleared to leave the NICU does not mean that all is peachy and he/she can be treated like a “normal” baby all of a sudden. Having underdeveloped lungs puts these children at a much higher risk for hospitalization, severe illness, and complications if they were to get sick with even the smallest cold. This is why babies born at 30 weeks or fewer gestation and babies with chronic lung disease requiring oxygen support qualify for the Synagis vaccine. While it does not completely protect babies from catching RSV, it reduces the severity of symptoms thus making it less likely for the baby to need to be admitted to the hospital. This shot is given once a month for all of cold/flu season (October-March). Shots end in March, but they protect the baby into April. Evan just got his last one for this season last week! Praise the Lord because that shot is the worst.
I also want to clear up a common misconception about germs. Many people say that we should expose our children to germs to “build their immune systems.” Well friends, I hate to break it to you, but that is a load of crap. Alex and I got into a debate about this the other day, and of course, I won after we did some research. (All of which I now cannot find because I don’t remember what my search terms were, sorry to all my fact checkers out there!) Time is the only thing that actually builds a baby’s immune system. Exposing my baby to germs will only make him get sick repeatedly. Yes, there is evidence to support the fact that once we get sick with one virus, our body remembers it and is able to fight it if it comes back along. This is the idea behind how vaccines work. But here’s the problem with that fact and why it is so overly simplified: it’s only that specific virus that your body will recognize and fight, and unless the exposure is from a vaccine, your body has to get sick first in order to “build immunities.” This is why you can get the flu shot and still get the flu. You are getting sick with a different strain of the flu that wasn’t in the vaccine. This is why you don’t catch one cold and never get another cold again in your life. So no, exposing your kids to a bunch of germs and viruses doesn’t really “build their immune system” in the sense that they will not get sick as much. They just won’t get the same exact cold more than once, but they will get colds. I believe I read that the average child gets 4-6 colds per year. So you can only imagine how many different viruses are out there. Yikes. So I will not be listening to the outdated advice we have believed to be true for so long. Exposing Evan to all of these germs and viruses will only cause him to get sick and possibly die at this point in his life. It’s blunt, but it’s the truth.
This is why it is reasonable (more like necessary) for us to be “crazy” and “overprotective.” Evan is extra sensitive to germs; his immune system is weak because he was premature (and extra small for his gestational age); his lungs are weak and underdeveloped. I’ve mentioned repeatedly on this blog that I am getting cabin fever, but I think preparing to write this post has given me the perspective and awareness to keep on keepin’ on. It would be so nice to just take Evan over to one of our friends’ houses, or invite whomever over whenever, or meet up with a friend at a coffee shop with Evan. But that is not what our reality needs to be. Our time in isolation has also made me to thankful for social media. I think it gets such a negative reputation, but man, for mamas like me it is a lifeline. It keeps me sane and helps me feel like I am having human connection when I am confined to the house. So I want to take a moment to thank you, my readers, for being that lifeline for me. For letting me have this space to vent, educate, and share our story.
So many people ask me what they can do to help us since our parenting journey looks different. In regards to this aspect (isolation), there are many ways you can help and be supportive. This goes not only for us but for any other NICU family or medically complex family you know including those whose children are battling cancer.
- PRAY. Pray for these families. Isolation can be really hard. The mental component of it is hard on the parents, but the physical aspect is so much more important. Pray for these sweet kiddos that the Lord would protect them from illness.
- RESPECT. Respect these families and the boundaries they have set, even if you don’t understand them. Instead of challenging their rules or parenting practices, ask why and really listen. If you do truly listen, you won’t see it as crazy at all.
- WASH YOUR HANDS. If you are the lucky few these families can allow into their homes, your first instinct should be to wash your hands before you touch ANYTHING in their house. Piggybacking on this would be to use hand sanitizer often in your visit: chances are you’ll never be more than a few feet from a bottle of it. If you touch your phone (which has more germs than you want to know), use sanitizer before you touch something again.
- BE HONEST. If you have even the slightest inkling of the sniffles or any kind of potential illness or you have been in close proximity to someone who has been ill, tell the parents. Let it be their decision if the visit needs to be rescheduled.
- DON’T HAVE EXPECTATIONS. Regardless of your relationship to the family, you should never have expectations about visits or what those visits should look like. It is completely up to the parents of the child to determine what they are comfortable with. Many people who come to meet a baby have the expectation that they will get to hold and touch that baby. That should never be your expectation healthy child or not. You are not entitled to anyone’s child. No matter who you are or what you have done to help out the family in their needs. Let the parents be the parents and follow their rules. For example, we do not allow anyone to kiss Evan even if we allow them to hold him. Luckily, our family and friends respect and follow this rule and do not take it personally.
We get to start to venture into the world in May just in time for Evan to turn ONE. Holy cow, that came fast. This is going to be a HUGE transition for us. Evan is still very easily overstimulated, so we will need to take it slowly. This also won’t mean that all of a sudden people can come over whenever and I’ll bring Evan everywhere I go. We can’t go from nothing to everything so quickly. So if you’re local to us or you are in our circle whether that’s family or friends, please be patient with us. I recently talked to my doctor about how coming off isolation terrifies me more than it excites me. I will likely still clam up if someone gets close to my kid in public whether I know you or not. I will not want people reaching for my child or touching him without asking (and washing their hands). I will not be okay with people getting close to his face. I won’t want to have visitors all the time at our house. I will likely say no to a lot of social events still to protect him (and myself) from overstimulation. And I need people to be okay with that because it is okay.