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She's Got Guts!

She's Got Guts!

So often along the journey of clothing preemie babies, we hear their stories and are reminded of what true fighters they are! It is not only the babies that hold this title, but also the parents. Sometimes the fight just to get pregnant can take so much resilience and perseverance! Getting pregnant can be just the beginning of their fight and journey to having a family.

We have had the pleasure of following such a family with Addie's story. She was born at 1 pound 8 ounce, 12-inches and spent 100 days in the NICU. Her mother writes a beautiful blog called "She Got Guts" www.shegotguts.com. She just wrote this excellent article on RSV and the upcoming Flu season in regards to preemie babies. We wanted to share it and pass on her website which is an excellent resource for preemie parents.

It’s officially October, and the start of Flu/RSV season in the state of Maryland. This is also officially time for my germaphobic anxieties to really kick in, my paranoia about every cough, sniffle, and public place. It’s going to be even more intense during our 4th Flu/RSV season with Adeline, since she is attending preschool for the first time. Why am I so anxious about germs for my 3 year old? Doesn’t she need to be exposed to germs? Why do these illnesses impact her more than most? Why did we choose to isolate her during the first 2 years of her life and do a partial isolation the third? I am answering all these questions AND providing you the research and science behind this decision. I’ve also completed my own research and have had over 150 (& counting) preemie parents share their stories with me about this very topic.

WHAT IS PREEMIE ISOLATION?

Preemie Isolation is significantly decreasing the likelihood that your premature baby would be exposed to germs, specifically flu & RSV but includes other things. You do this by staying home, severely limiting visitors, outings, getting flu shots, practicing good hand washing, and not attending family & friend events/gatherings. Basically you become a recluse in your home and do not allow people to come over. This sacrifice is worth it in the long run when it can decrease the chance of illness for your fragile child and makes sure they have the best possible chance at life.

OUR STORY

Our daughter was born 14 weeks early at 26 weeks old due to severe preeclampsia. Our journey was a very rocky one in the NICU as Adeline contracted NEC at 3 weeks old, and thus began our GI journey with issues with growth, food tolerance, stooling, vomiting, absorption, strictures, blockages, malrotation, volvulus, Short Bowel Syndrome, GERD, dysmotility, the list goes on and on. She ended up needing surgery at nearly 3 months old, and when she was discharged at after 114 days, she was still very sick. At 3 years old, she’s had 12 surgeries and still has a GJ feeding tube and struggles with many GI related issues. Up until this past July, she still had a central line and continues to need a lot of medical support, we travel from Baltimore to Boston for her medical care, and she still is occasionally hospitalized.

When Adeline was getting ready for discharge from the NICU and I was trying to decide whether or not to return to work I had a frank discussion with our team of Neonataologists. They said if I could, stay home with her. Their recommendation was strict isolation during Flu/RSV season during the first two years of life (except for doctor’s appointments & therapy), no daycare, only allow people around her who had been immunized with whooping cough, gotten their flu shot, and limit visitors & germs. They even told us not to allow anyone except Mom & Dad kiss her until she was 2 (I made an exception for Nonna & PopPop). They were less concerned about her being outside in nature. Even though we had to make a tremendous amount of sacrifices (financial, mental, emotional, etc.) I left my dream job to take care of Adeline, in isolation. Our lifestyle changed greatly, finances were much tighter, but I am grateful I was able to do that as I know not all families can. Last year, her third flu/RSV season, we did a semi isolation and avoided places saturated with germs (e.g. children’s museum), but ventured out more.

We took isolation seriously. I quit my job to care for my preemie. We left the house only for doctors appointments. We did not allow visitors. We did not attend family gatherings or holiday parties. We even had some people give us ahard time about this decision or even question it.

WHY SHOULD YOU ISOLATE?

One of the things people would say to us that would make me nuts and is one of the biggest myths is, Your Baby Needs to be Exposed to Germs to Build their Immune System. Although most people were well-intentioned they also were unaware that an infection that could be easily treated in many full term babies could be dangerous of even deadly for a preemie. Babies’ immune systems mature with time, not exposure. The best way to avoid complications and protect a maturing immune system is to not get infected in the first place. Many people confuse exposure to infections with exposure to things like dust, pet dander, etc. which has been proven to decrease likelihood of asthma and allergies. Having your young children around pets, dirt, etc. is much safer for your preemie than having them around people with germs.

Before we even got to hold her, see her, touch her, we learned how to properly clean our hands. We sanitized constantly, changed our clothes before going to the NICU, and the medical professionals caring for her instilled in us that exposing her to germs was very serious business. It was so serious, that after she got very sick the first week she was born we only allowed mom and dad to touch her. Protecting her was a matter of life and death, so we took it seriously.

Please continue reading here https://www.shegotguts.com/posts/2018/10/1/isolating-your-preemie-during-flu-amp-rsv-season