Healing after Trauma- My personal journey

On January 25, 2017 at 5:30pm Melanie coded. 

It was on this day, at this time that I changed. Forever.

After this event I was in fight or flight mode. Or Mama Mode as I like to call it. I was doing what My baby needed. I didn't have time to be sad to to sit down and think about how this event would affect the future. I thought I was coping extremely well for what had happened.

I always heard that when you reach a point where you can tell a story without getting emotional that you were healed. Well I told that story of her coding so many times and I never cried. I could recount the events to any doctor or anyone to share Melanie's story. I THOUGHT I WAS HEALED.

On April 18, 2018 (yes nearly a year and a half later) Melanie and I were at the hospital for one of her routine follow ups with one of her many clinics. We were here all the time it felt like, I was never triggered. I was able to walk those halls like I lived there. But today was different. Today I would be walking down the hall and walk past of the the PICU (pediatric intensive care unit) doctors that had a hand in saving my little girls life 14 months earlier. EVERYTHING rushed back. I felt a pang of fear and desperation crash into me like a Mac truck. I had to sit down, I felt weak in my knees and my whole body began to shake. I finally made it to the atrium, found and empty chair in the corner and lost every bit of composure I had been carrying around for so long. 

When we made it to her appointment for the day we didn't get the best news. She was dropping weight for no explainable reason and everyone was perplexed. Once again, I LOST IT.  I was a mess. I couldn't even articulate or understand myself why I was so upset all of a sudden.
                                                                                .....

After that day in April I continued to feel down and angry. I started having flashbacks from the day Melanie coded and also different happenings in the PICU. Seemingly random things like certain smells or sounds would sent my body in to full blown panic before I could even recognize what was happening. 

I kept thinking to myself, I have been fine all this time why is this happening now?? Melanie is doing so much better, why am I so upset?? I SHOULD be over this by now.

After two months of not feeling better and wondering if I would ever be able to break out of this unbearable feeling I decided I needed to talk to someone. I contacted the Clinical Therapist that had come to check on me multiple times in the NICU and PICU. We talked briefly about what I was feeling and we set up an appointment. 

After a couple appointments with her talking thought what I was feeling we concluded that I has experiencing a Delayed Reaction to the trauma we experienced. I learned that it is actually quite normal for parents in ICU situations. When all the shit is hitting that fan you don't have a chance to process what you are feeling and what is happening.

It's like a Filing cabinet. Your brain pushes all the hard things in to drawers and eventually the drawers start to overflow so you put all your weight against those doors to keep them closed. There will come a point when she drawers are so jam packed with crap that they all fling open at once and you are left with a horrendous mess of papers. There is absolutely no way in hell they will all fit back in the cabinet so you are left with no choice but to sit down and sort through them one by one and file them correctly.

She gave me a few "homework" assignments. First was Yoga. Huh?? Yoga?? Yep that's what I said too. But honesty there is something so relaxing and releasing to slow down, breathe and stretch. She actually wanted me to find a yoga studio to attend classes but ain't nobody got time for that. I have found a few instructors of you tube that are very soft spoken and offer sequences for specific times. Such as for when you are feeling overwhelmed, anxious or pissed off. I do these when I feel like they would be beneficial and I really can tell a difference. Here is the link to My favorite YouTube yoga instructor!     

                 

  https://www.youtube.com/user/yogawithadriene

The second thing she wanted me to do was to write, on paper what I was feeling. To go down deep inside my self and dig out all those buried emotions and stick them to a notebook page. Which was all well and fine until she mentioned that I would be reading it to her at our next appointment. I put off this assignment until 2 days before I saw her again because I knew it would hurt. I knew there were things that I was feeling that I did not want to go back to. And I was right, it was freaking hard. I cried, but not just cute tears rolling steadily down my cheeks. It was the cry that people can hear from another room, the type of cry that causes your cheeks to feel raw for days after from of being marinated in salty tears. It was not a pretty cry, but it was a healing cry. 

I wrote 4 full pages about what I was feeling. I felt better afterward. I am glad that I did it. I also read those tear soaked pages of angry, depressed and grief stricken words to her 2 days later. which was also incredibly hard. But also, healing. I still have these papers folded up neatly in my wallet. I see them every time I open it and its a good reminder to check myself and file away what i'm feeling at that time instead of shoving it in the back of the cabinet.

In addition to talking to a professional the thing that has helped me the absolute most is prayer. Which seems cliche, and something that honestly I had to work very hard at. I had reached a point that I didn't know what to say while praying. I encountered this feeling a couple times throughout our journey, sometimes it is hard to pray when it feels like there is no reason for all the pain. But I found comfort in knowing that God knows my heart and he hears the unspoken prayers. 

(If you haven't heard this song I urge you to look it up. This is my #1 when life is taking a very different direction than I had planned.)

I am still working everyday toward getting better and better. Its not easy and its something that can creep back up on you very quickly if you don't keep it in check. I have days when I am just down and times where something is looming over my heard and I have to shoo it away. 

If you are feeling down, please seek help. It does not make you weak or mean you are not a good parent in anyway. If you need medication, take it. If you need to just get something off your chest talk to someone. Do what YOU need to do to feel better. No matter what anyone says!! 

You are a beautiful person who has a tiny human watching and learning from you. So take care of yourself, have a tasty beverage and give your worries to the man upstairs!

How we stay well during Cold and Flu season!

As many of you know this Flu season has been pretty rough. With 2 different strains that are only 10% covered by the vaccine a lot of people are catching the yuck! In this post I will show you my must have preventive measures that I am using like a crazy person!!

Hand Sanitizer Gel and Antibacterial Hand Soap!
     During cold and flu season my husband and I revert back to our NICU days in the sense of "gel in, gel out". Meaning every time we get in out out of the car we sanitize before touching everything! I have small bottles of sanitizer in both of our vehicles in easy to reach places for this!! We also keep a bottle of sanitizer in the house for in between hand washing! Also we love Dial Coconut Milk Antibacterial hand soap! it is much more moisturizing than other antibacterial soaps we have used and we love the fresh coconut scent!!

Clorox Antibacterial all purpose wipes

     We go through Clorox wipes like crazy in our house! Every day I make sure to wipe down door knows and light switches. Usually on the weekends I will wipe down nearly every surface in the house with these bad boys! I have also used these wipes to pre-sanitize toys before soaking then in a vinegar and water solution!

Wet-Nap Antibacterial hand wipes

     My mom bought me a box of these hand wipes and I will never go anywhere without them now!! They are great for both my hands and also Mel's. I also use them to wipe off tables, chairs and anything else we touch while out! 

Antibacterial wipes at grocery stores

     Many stores now have a little area at the front door with complementary wipes for your shopping cart. Before I had Mel I would see these stations and kind of laugh to myself thinking people were just germ freaks. Now that I have a child that has been through some pretty rough stuff I am that person standing at the door holding a baby, cart cover and sanitizing my cart for 5 minutes. And I am not ashamed! I don't have a picture of the sanitizing station at our local store because I am always too occupied with scrubbing the cart down! lol

Shopping Cart Cover

     Speaking of touching things shopping carts are disgusting! I can practically see the germs crawling around on them! When I go to the store with Mel I hate having her directly touch the cart. This is where our Floppy Seat cart cover comes in super handy! I also use the cover when we go to a restaurant for the high chair! on top of it making it more safe for Mel germ wise and also being freaking adorable it seems a heck of a lot more comfortable then sitting on a hard plastic shopping cart or wooden high chair!

Diffusing Essential Oils

     Yes, I use Clorox wipes and I wipes my kids hands with hand sanitizer but I do like the more natural route as well. I have been diffusing Young Living's Thieves essential oil and also their Orange oil in my Dew Drop oil diffuser. It smells so good and the Thieves has been proven to kill bacteria. So I feel like this is a win win!!

Black Elderberry Syrup, Vitamin D and Probiotics 

     I started Mel on Black elderberry syrup around November and I really believe it has helped her little immune system with all the nasty floating around in the air. The elderberry syrup I am currently using is purchased off Amazon, but I recently learned that elderberry syrup can be made at home so I will be exploring that option soon!! Vitamin D is an essential vitamin for all people. I personally have had Mel on a vitamin D supplement since she was tiny but I still keep her on it because we have not been able to go outside much and soak up sun. Finally probiotics. We use the Culturelle Kids powder packets and they are so so easy to mix in with her food and give her through her tube. I can really tell when she misses a day of probiotics because her poor tummy gets so torn up! I also purchase her probiotic from Amazon! 

Keeping our distance!

     The fact is that we can't trust that everyone who is sick is going to stay home from work or school. and obviously if we are going into a store that has a pharmacy you can bet that contagious people have walked around and shopped for things while picking up a prescription. Because of this we have tried try to stay home as possible lately. Sonic drive in has been our new favorite place lately because it gives us a chance to get out of the house without coming into contact with too many people. 

My mom recently came down with the flu and if you know us in real life than you know Mel and her Honey are inseparable when they are together. And my mom is my best friend so we are together a lot! As hard as it was for everyone involved we didn't see each other for 14 days from the day she was diagnosed. I know this sounds a little like over kill to some people but after seeing Mel go though everything she has we are very cautious then it come to things like that! 

Here are a few photos of Mel with her beautiful Honey!! Can I just take a second to say there is no way I could have handled everything we have been through without my mom. Seriously I would locked in a padded room of it wasn't for this angel of a woman!! Also say a prayer for my eye ball because she is going to poke me in it when she knows I put pictures of her on my blog! ;)

We try to protect Mel from all the nasty germs out there. But we are fully aware that these measures can only do so much. Mel has had her Flu vaccine and we know what to watch for and what steps too take if she does get sick. (Although I pray daily that will not happen) 

I would like everyone to remember. RSV is not just a cold to an infant. And the flu is not just an inconvenience for someone who has compromised immune system. So stay home if you feel like poop, sanitize the HELL out of EVERYTHING, and thank God for another day with those beautiful babies he gifted to you.

What precautions do you take for your family during the winter months? I would love to hear your strategies in the comments!

Love until another day,

 Shelbi

Simple Emergency Go Bag

We have had 2 trips to the ER that turned into admissions and I was not prepared in any way, shape or form for either stay! I hope that you learn from my experiences and ALWAYS have your go bag packed and ready God forbid you ever have to run out the door in the case of an emergency!

This is what I keep in our go bag!!

Clothes for YOU:

  Both times we were admitted I had nothing but what I was wearing and the diaper bag. I don't know about you but being stressed out and trying to explain to your stressed husband over the phone where you favorite pair of sweat pants are located at home does not work out super well! I keep a pair of comfy pants, a tee shirt and a set of under pants and socks. Our PICU area has a washer and dryer you can use and that was SUPER helpful for me during our stay!!

Toiletries:

   At the beginning of our stay I didn't have anything in the way of soap or bathroom essentials. I was given some by the PICU staff what is donated to them for parents. I don't want anyone to take this the wrong way because I appreciated it SO much, but I hated the products. they left my skin filmy, my hair greasy and the bristles of the tooth brush fell out while I was brushing. I went to the store during our stay and bought good stuff. My daily shower time was the only time to myself, and my decompression time. I wanted to enjoy this time and I wanted to feel CLEAN! After I got my Pantene shampoo and conditioner (because i'm super fancy) and a razor for my legs I felt like a new woman and I actually enjoyed going to the locker room and locking myself in a shower for 10 minutes! I now keep a bag of all of these items in our go bag!!

Medications and Vitamins: 

   During our admission of 43 days I literally went outside probably 3 times. I lived in those hospital walls with my little nugget and I got 0 vitamin D! I keep a small container in the go bag with 1 or 2 days of my vitamins. I only keep a small amount because if anything did happen someone could go get more or I could. But it is nice knowing I am covers for a day or two if it came down to it! I have also started keeping a little supply of Mel's meds in the bag. I do this because I look at the bag more now as just a go bag vs. a hospital bag. Its nice knowing that is a case of any emergency I can grab this bag and we would be good for a little while! I need to refill our meds and vitamins for the go bag, I recently used what we had in there because they had been in there for a while! 

Cash & Quarters:

  I have a small pouch in the go bag with about 10.00 in 1 dollar bills and a few dollars in quarters. Pretty much no matter where you go and at what time there is a vending machine somewhere, and sometimes when you make a late night ER run some cheese crackers and a DP sound like a gift from the heavens. Also my husband always goes to the vending machines when everything calms down. Its his time to get away for a minute and so something helpful AKA get this mamma some damn food! Because I have been known to get hangry and this is not a pretty sight! The machines at out Children's hospital take debit/credit cards but it is just nice to know that that extra stash is there! Our bag came with a cute little matching change purse! it is pictured below with mt Journal and pen!

Journal and Pen:

  I am a note taker. Every time a doctor would come into the room or a nurse would teach me something new I would grab my notebook and take notes! Some times I would get funny looks for writing down the most trivial things that I "Should" remember, But there have been SO many times I have refereed back to those notebooks! I also would try to journal daily about what happened with Mel and what was said that day. There are many days that I missed due to being busy or falling asleep but I tried. 

Mel's Things:

  In addition to a few days of meds for Mel I also keep a clean outfit and a blanket from home. When we went to the ER the first time and were admitted to the PICU they cut Mels onesie off of her (I still have it). I didn't have any other clothes with us, since we were there for 43 days I was able to get other clothes for her but if we would of gone home that evening I wouldn't of had anything for her to wear. I keep a blanket from home because Mel loves muslin blankets with satin tags. every night when she is going to sleep she finds the tag on her blanket and holds it for comfort. Hospital blankets are stiff and scratchy, during our PICU stay I actually had a couple muslin blankets and she would get a fresh one each day and night. This was another reason the washer and dryer in the PICU were extremely helpful! A couple diapers and wipes, Just in case! I included the tag to one of Mel's muslin blankets!

So this is what our Go Bag consists of. Pretty simple but would make us more comfortable if we ended up in another emergency situation! I feel that a bag like this is a good idea for anyone, you never know when you may have to leave your home unexpectedly and its such good peace of mind knowing that if you grabbed nothing but this one bag you would be okay! I pray that no one will ever have to use their go bag, and that everyone is staying well through this nasty cold and flu season!

LOL I just had to post this! Cracks me up every time!! for real though, go wash your hands have some wine and thank God for Lysol and Clorox!! Ohh and kiss those sweet babies!

Love until another day,
Shelbi

Monthly Medical Supply Order!

Every month I place an order through our DME (Supply Company) for Mel's medical supplies. In this post I will show you what our normal supply order consists of and how I store it all!

Our normal supply order

• A month supply of food bags. Our DME is very good about making sure we receive exactly how many bags we need for each month. I have seen other people post online that their DME sends 30 bags a month regardless, which is ridiculous to me!
• Feeding tube extensions. We receive 4 bolus and 4 continuous extensions a month. This is plenty for us since I am able to clean the continuous extensions and they last quite a while and we only use the bolus extensions for venting!
• Pre-cut Gauze 2x2 pads. Each box of these contains 60 2x2s. On days when Mel's tube is leaking more than normal or if I need to clean her button more often I go through a few of these! Every month I have to make sure that these are on our order or we don't get them! 
• Syringes. We receive 6 of each of the following sizes, 3mL, 5mL, 10mL, 20mL and 60mL. I use the 20 and 60 mL more that the other sizes but I still get them every month just so we will have them!
• 4 Pulse Oximeter Probes. Mel is still on a pulse oximeter at night to alert us if her heart rate or oxygen dip to a dangerous level. When we were using the pulse ox 24/7 we ran through these probes like crazy! I was lucky if I could get one to last a week. Now that we are only using it at night I can get one to last around 2 sometimes 3 weeks! (I use posey wraps and a sock over Mel's probe, it helps keep it in place and also cuts down on outside light allowing the probe to read better!)

We used to also receive Suction canisters, hoses and tips. We don't use the portable suction as much as we used to so after creating quite a stockpile of these items I decided to hold off on them for now!


After I place our order with our supply company it usually take about 3 or 4 days to receive our supplies. I recommend that if you are new at tubie life to call your DME and see what their normal processing time is! That way you don't get stuck using 1 food bag for 4 days! (Which can be done if in an emergency, just clean very very well with hot water and or Coca-cola!!)

Storage

I have seen some pictures from other moms that have all their supplies neatly put away with adorable little labels on each bin and its legit Pinterest worthy. I'm not that mom. I simply have 2 plastic 3 drawer containers, it works for us!

This is a pretty minimal supply order and storage area compared to some people, depending on different medical equipment such as trachs and ports. Also some people receive their child's formula and Real Food Blends from their DME so they have much larger orders!


Do you have a lot that comes from your DME? How do you store your medical supplies? I would love to hear your feed back in the comments!!

Squeeze those little people of yours tight this evening it gonna be cold outside!!

Love until another day,
Shelbi

Cleaning your tubies Stoma!

When Mel first had her feeding tube placed I was super intimidated by it! Up until that point I had never seen a G tube in person or even a stoma of any kind. And I did not want to hurt my little nugget by doing something incorrectly. Since then I have grown very comfortable with Mel's site and in this post I will show you and explain how I clean and dress her site daily!

I would like to preface this post with the fact that I am not a doctor and I have had no formal medical training. Everything I know is from my own research, being shown by medical professionals, and what works best for our family. If you have any concerns about your child's stoma or button I suggest you consult your child's physician.

I clean Mel's stoma every night before bed and also every time I give her a bath. This is the first step I take in her nighttime routine so that I can insure my hands are freshly cleaned every time!

Gather every thing you will need and have it laid out beside you so it is easy to reach. I don't like to leave the button exposed to go grab something I forgot because Mel loves to pull on it! if I do forget something I cover her button back up with her onesie and then go grab my forgotten item!

The Items I use every button change!

Q-Tips, baby soap, warm water, Desitin, 2x2 split gauze and a fabric tube pad. 

 WASH YOUR HANDS! Your child's stoma can become infected just like any other opening into the body. Stoma infections can be very serious and lead to complications. 

• First I take off the dirty fabric tube pad and split 2x2. I just set these to the side for the time being.
• I then dip a Q-Tip into the baby soap and I clean around her stoma. I make sure to get all the "tube boogers" loosened up.
• Then I take a clean Q-Tip and I dip it into the warm water and wipe around the stoma to further remove any crusties and make sure the bottom of her button is clean.
• After it is clean I take a dry Q-Tip and make sure I dry off the whole area really well, sometimes this takes more than one Q-Tip.
• Next is the Desitin or whatever barrier cream you use. I like to pull our Desitin up in a 3 mL syringe so I can "pipe" it around Mels stoma! is is so much easier and way less messy!
• Place the clean 2x2 around the stoma.
• Finally place the clean fabric tube pad over the 2x2.

I like to use a 2x2 and a fabric tube pad for a couple reasons. Desitin is some crazy stuff and it is hard so wash off of our tube pads. Also I feel like using both pulls Mel's button up to where it is snug and it does not move much. 

Desitin or barrier cream is used so that if the stoma leaks stomach acid or the button leaks formula/food the healthy skin around the button will not get burned and irritated. 

Ever since Mel was converted to her GJ tube she has had a decent amount of Granulation Tissue around her stoma. This is a very common thing with stomas and some cases are worse than others. Granulation tissue is not painful but it is very very vascular so it bleeds very easily. Some doctors and parents like to treat granulation tissue with Silver Nitrate. Which looks like a long matchstick with silver on the tip. When the silver touches skin it cauterizes the tissue. A lot of people have had great results with silver nitrate and had minimal discomfort. When Mel was about 7 months old we went to a GI appointment and he used the silver nitrate. Mel screamed like she was in pain and her stoma was sore and irritated for days afterward. Also I saw little improvement with her granulation tissue. There are other ways to treat granulation tissue if needed. (Always consult your child's doctor about any problems with your child's stoma or any treatments.)

Steroid Cream- We have Triamcinolone cream that we were prescribed for granulation tissue. this cream can only be used for a few days at a time every couple weeks.

Alum & Calmoseptine ointment- Alum powder can be purchased from the grocery store in the spice isle and the cream from the pharmacy area. These 2 items can be mixed into a paste then placed around the stoma. I have yet to try this method but I will be soon and I will update on how it works!

Essential oils- I have read that a solution of 1 drop Frankincense, 1 drop Lavender and Coconut Oil are good to help heal granulation tissue. I have been using this method on Mel for 2 weeks now and I see slight improvement but not much. I wanted to try this method as it is more natural. I just placed a drop of each essential oil in a 10mL roller bottle then filled the bottle with fractionated coconut oil. ( I saw no improvement with this method, I will be trying the Alum and Calmoseptine soon!)

I tried to get pictures as I was going through the steps but umm wrestling a 16 month old while protecting a G button and trying to take pictures is NOT easy! I will work on getting pics and will add them if I am ever successful!

As always if you have any questions put them in the comments and I will get back with you!! 

Hug your little people tight and have a big ol' glass of wine ladies!!

Love until another Day,
Shelbi