![]() Hello! Thanks all for giving this blog a read. I wanted to give you all a few ideas as far as using everyday items/good finds that could help you with your trach child (this blog will also mention items to use for babies/children who may have developmental delays as well.) DISCLAIMER - I am not a professional, doctor, or therapist. These are items I use for my Leo that I know benefit him and us! These are just some good buys, household items, etc. that I've found useful for raising him. 1.) Bean Bag- Get a bean bag. Just do it. Leo's PT at Dayton Children's was a complete angel and she gave us the idea to get Leo a bean bag after we discharged from the hospital for good. Originally, Leo could only nap in his Momma-Roo (Link for Momma Roo will be posted because though it is a little expensive, bubs LOVED it), but as he grew into a big toddler... he needed another place for his naps. He also does NOT like his crib. So we got a medium sized bean bag from Home Goods. He naps in it, we can mold it which helps while he practices being in an upright position, it helps him be more comfortable during as we can adjust the incline as needed by molding it. That way he is comfortable sitting up while also being able to challenge him. Everything I do for Leo, therapy-wise, I try to make a positive experience. For example, sitting up. He does not like it whatsoever. Yet, if I use the bean bag and slowly sit him up little by little he gets used to the incline. And he loves his bean bag, so using something he loves helps him adapt to that position and make it into a more positive experience He has a tomato seat which is pretty much a booster seat for him to practice with. Yet, it's hard, clunky, he is extremely upright, and he sinks into the seat making it uncomfortable. He always has a negative experience while practicing with it. He is a smart baby and knows when he is getting into it because within a couple minutes he will drop his heart rate. Whereas, if I use the bean bag, he may have a higher respiratory rate because he is still being challenged, but he doesn't mind it as much because he loves his bean bag. Thus, making his time practicing sitting up a more positive experience. 2.) Colander - A completely random item, I know! Yet, if you want to stimulate your baby, use this with natural sunlight from a window. Leo loves his night lights, but he can't see them during the day and if we shut off all the lights then he will definitely nap. Which isn't what we want when we try to stimulate him. Using the colander next to a window during the day makes Leo so excited and ready to play! Which means so much to me because with Leo working so hard to breathe everyday, he gets exhausted easily. 3.) Craft Filer - Again, Home Goods find, but I'm sure you could probably find something cheaper somewhere else. Anyways, this is a life-saver for organizing Leo's everyday medical equipment such as 2x2 gauzes for trach/g-tube care, sterile water cups, extra trachs for emergencies, suction catheters, and so much more! I think it can also look cute in the nursery as well. If you want to get really fancy.. then get a label maker. If you have other caregivers or nurses watching your child they will really appreciate this. This could also make or break an emergency. You will be so full of adrenaline and fear that the last thing you want to do is go crazy looking for something when you could just have had it organized/prepped before-hand. 4.) Pure Argan Oil - I know. RANDOM. Leo has extremely dry skin and nothing seemed to work to relieve his red, flaky skin. You will be in and out of the hospital due to admissions when your child is sick, and most hospitals are really dry. Leo's skin immediately reacts to the environment when we take him to the hospital. Even after a day or 2 admission, we will come back home and he will look so uncomfortable with his poor skin. (if you have this problem while visiting/staying at the hospital long-term, I recommend this product to you as well!) I personally use the pure argan oil and a body butter derived from argan oil. I tried an unscented argan oil body butter from Josie Maran's skin care line, and within hours - Leo's red patches on his tummy were completely gone. He had baby smooth skin which he has NEVER had. This product is expensive, but it goes a long way. I prefer this over the hydrocortisone that was prescribed to Leo as well. A link for the pure argan oil body butter that I use will be posted below. Well not too many things on the list, but I wanted to point out a few gems that I've found to be helpful with raising our bub. Again - not a professional. Just a few things that you don't have to buy or can find cheap online to help you on this journey. (I didn't post a link for the bean bag , colander, or craft filer because I thought those items would be pretty easy to find just by googling, and there is no specific brand I would recommend for any of those items) Thanks all for your time! Josie Maran Body Butter link: https://www.josiemarancosmetics.com/products/whipped-argan-oil-body-butter Momma Roo link: https://www.buybuybaby.com/store/product/4moms-reg-mamaroo-reg-4-classic-infant-seat-in-grey/1061817784
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![]() Hello, everyone! Before getting straight into my first real blog where our journey started, I just wanted to preface that this is based on OUR experiences. Some families spend 2 days in the NICU where others will spend 2 months and go on to spend another year in the transitional unit. There are babies who may spend a while in the NICU and come out not needing a trach or g-tube. Or others may need just one or the other. There are many stories out there, but I wanted to start sharing ours in hopes of someone receiving the help and guidance I wish I had while we were waiting to bring our bub home. I hope you take something away from a couple of my top tips for surviving the NICU life! Tip#1: Surround Yourself With Love I know it sounds cheesy, but seriously. Not bringing your baby home is a different type of heart break and disappointment. Being stuck in such an unknown will drive you mad. Surround yourself with people who love you. Lean on your partner, family, and your friends if you are able to. Our parents made us dinners (in lieu of the MANY hospital dinners eaten). Let others help you because you will most definitely need it. With COVID it may be hard to connect to loved ones but take the time to at least call another human. You're going to have so much built up anger, frustration, and sadness during this time. You will be confused and appreciate just a time out to have a true connection with someone you love so you don't feel so alone. Tip #2: Self Care Is Everything This may be the most important point to this blog. DON'T FORGET TO TAKE CARE OF YOURSELF! Make sure you get at least one solid meal in. It may sound silly to remind you, but that was honestly one of my biggest problems during our NICU stay. At Dayton Children's, food was not permitted in the baby's rooms. Obviously with wanting to be with my child, I would opt to skip lunch and spend the whole day with bub. I'd go out early, eat an instant oatmeal then maybe eat dinner everyday. Which is how I dropped all 30lbs I gained from my pregnancy, Stress and no eating is NOT a good combo. Make sure you get at least 1 solid meal you sit down for during your day. Even taking a short walk around the hospital while eating a snack is beneficial. Another simple reminder that you wouldn't think you'd need a reminder for - shower. After giving birth, my first shower lasted over 40 minutes and it made me feel human again. Lastly, be sure to sleep. Most people have maternity leave, so take advantage of your time off to let your body recover. Since you are in the NICU, as unfortunate as it is, you do have the hospital staff to help you take care of your baby. You will be able to sleep through the night while also knowing your baby is being cared for. During our hospital stay, we were lucky enough to sleep in Leo's room. Yet, there were definitely days in our 110 day hospital stay that I needed to sleep in my own bed and have my cat curled up next to me. If the staff at the hospital truly cares for you, they will give you these reminders too and if you feel it's needed - permission that it's OK to get out of the room. Let me repeat that little bit again - IT IS OK TO GO HOME AND TAKE CARE OF YOURSELF. I felt guilty going home, but especially if you have other kiddos at the house you have a whole other life you need to maintain outside of the NICU life. Remember, you can't pour from an empty cup! Tip #3: This Sucks, So Process This However You Need To This kind of goes back to my intro to this blog. Everyone is different, so some people may have read my first point and said "screw that" and will need a few days where they just process their frustration in isolation. Which is completely natural. I wasn't as angry as I was scared and grieving right after giving birth. (There were definitely seasons of anger during our stay but that was later - which I will get into in a different blog!) I clearly remember this moment - Either the 2nd or 3rd day after Leo's birth we stayed at Miami Valley before going to Dayton Children's. I saw another family crying down the hall due to what I can only assume their baby not making it. Which made me feel grateful to at least still have Leo. Yet, you have to remember that another person's sadness doesn't erase your own. Though I still had my child, my family had battles to fight during our 110 day hospital stay. There is a balance of feeling grateful that your path didn't lead to a certain area while also validating your own grievances. Which is something I found myself learning now that I am able to reflect having gone through everything we have. There are going to be unknowns for the first few weeks, if you are anticipating a longer stay. In which most cases you can tell pretty soon if you are or not. (Leo was 9 weeks early and we were told it would most likely be a 2 month admission) Yet, no matter how long your NICU stay is, you will get through it. Lean on loved ones, take care of yourself, and allow yourself to go through emotions without the guilt. |
AuthorPresley T. Cruz Archives
January 2021
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