A Little 101 O On How To Mix Formula, Because There Is No Right Way To Do A Feed

This post is going to have a ton of pictures for everyone! I thought everyone might like to know how I set up Blake and Payzlee's feeds every morning. BUT FIRST I need to update everyone on a few thing. We saw the ENT this week for Payzlee. The dr was AMAZING. He has a few studies that he does that we will be joining. One is an aspiration group. What better place to for our aspirating girl then a group that specializes in kids who aspirate without a cause. The other is a lung/pulmonary group that will watch and study her lungs, ie if she gets infections a lot or not at all, if she gets sick easier, what changes can be made if she is getting sick to reverse that...those kinds of things. He also is going to go in in April and look at her vocal cords. Normally this would be done in the office but because of her age, the risk of damaging something when they stick the camera down her throat is greater so she will have to be put under. We are waiting until April because we found out when she had her gtube placed that she has sleep apnea and we have a sleep study set up for the end of March. The dr wants to wait to see if she needs her tonsils or adenoids out and if she does then he will take them out then instead of doing 2 separate surgeries. Payzlee is also having another GI flare up. We aren't sure why. We thought we had figured out all of her issues but apparently not. We go back to her GI dr tomorrow to figure out what to do and where to go from here. At this point she isn't even tolerating her feeds. She's throwing them up. We have to keep her hydrated and she does need some nutrition so we will see what they say tomorrow. I took these pictures today. Isn't she a hoot!!! I love the stage where they want to say "cheeeeese" and smile for the camera! Ok, now back to the original post. So every morning I start with this I make up our 24 hr formula supply every morning. I put each child's formula into their own separate jar. I measure out the kids' formula on my scale by grams. I use this measuring cup because it's easier to pour the formula into the shaker. The first thing I do is measure out the amount of formula I need. Then I put water in the shaker and add formula. It looks like this. I then shake the formula up so there are no clumps. Clumps are bad...they cause feeding tube hell for mom's. There's blocking and beeping of the machine, and louder beeping of the machine, and finally yelling of the machine....not really but it feels like it!!!! I have to measure the formula and add a certain amount of water to get it to the amount of formula we need. Right now with Payzlee's GI issues she and Blake are taking the same amount of formula in a day. Payzlee usually takes less but for now it's the same. 196 grams of formula and we mix with water until it equals 31 oz of formula. That's about 1-2 oz that I can spill and have for the tube with the last feed but they are both getting close to 30 oz of formula per day. That means I go through 1 can of formula (or more depending) each and every day. That's 30-31 cans of formula EVERY SINGLE MONTH. This stuff is NOT CHEAP either. We have been fortunate enough to have our insurance pay for all of it once our deductible has been met. This year we met it on both kids in the first 2 weeks of January with all of our hospital stays!! If we were to buy the formula for each child for a month, we would be spending about $2,000 (could be more or right at....it's been a while since I have priced it out)A MONTH just with formula alone. One thing I don't talk about, which I will now share, is, we have Medicaid. We don't qualify for the complete free so we have a deductible for all medications, dr visits, hospital stays ect. Sometimes they aren't much but they add up. When we go to several dr appts a month, we tend to pay out on deductibles. That being said, I am SO GRATEFUL for the coverage we get. They cover a lot of prescription costs. Blakes medicines for one month are close to $1,000 dollars and Mylee's are close to that with her asthma. Again, we are blessed, so blessed. Now back to more preparations!! So after I mix the formula, I put it into their pump bags. I then attach the extension(what fits into their buttons) and then I prime the line or get all of the air out of it. If I put all that air into their bellies, there would be puking for sure and a crying mom! Here is the bag and extension and me starting to prime. The teal part you push on while squeezing the bag and it helps move everything through faster. Once Everything is primed, I get the pump ready. This is what the pump looks like. It is the infinity pump. From there I put the feed bag into the backpack, strap it in, take the teal thing I squeeze for priming and insert it into the pump. The rubber teal thing goes around the black circle and the rest is stretched and hooks onto the right of the circle. This is what makes the pump send out formula. From there I wind up the tubing and put it in the back pack like the picture above. I then have to wrangle down a child and strap it to their backs and hook them up like so... FYI he is NEVER this happy about a feed! He was only happy because I told him I needed him to pretend so I could get a picture for people to see!!!

Riding your trial to the end

I keep trying to figure out how to start this post. I need to share a few things since I have decided that I need to share "our story". What I have to say is raw and hard to share. It's hard to be so vulnerable and let people know who you are and what has shaped you. Let's start off with what made me think of writing this post. Last week was Feeding Tube Awareness week. (I urge everyone to check out the website www.feedingtubeawareness.org as there is a lot of information on this website that may help you to understand our journey just a little bit more.)It got me thinking about our journey and where we started with Blake and Payzlee and how far we have actually come. I home school, I am a mom, and I deal with medical. I am not a superhero I am not extraordinarily amazing. I am a just a mom doing extra things then most moms. I love my life. I love who my kids have become. I LOVE our trials. This last week or so has taken me back to when Shaun got hurt. Shaun got injured at work May 1, 2009. Tayla was 2 1/2 and Mylee was a month away from being 1. We were living in Burley Idaho at the time. Shaun was drilling water wells. He loved his job. I liked that he was so happy. Shaun got his arm wrapped into a drill rig while it was spinning. It broke both of the bones in his forearm (yes his dominate hand!), broke all of the bones in his wrist, crushed his ring finger, tore ligaments and more in his wrist, dislocated his shoulder leading to the stretching out of the muscle that keeps your shoulder in place, and also tore his ACL and meniscus in his left knee. I remember the call like it was yesterday. Shaun spent almost 5 years on workman's comp and had 8 surgeries. Shaun had a doctor, in the beginning, who wouldn't listen to him. This doctor did some really unfair things to our family causing addition pain and heartache. Had he just listened Shaun wouldn't have had to have a wrist fusion and would have been able to start getting better faster. Instead we had set back after set back. Had he just believed Shaun that he had actual pain, Shaun's arm wouldn't be near what it is now. During this time, We endured a lot of trials and A LOT of heartache. I made enemies with friends, went a bit crazy, and pushed everyone close to me away. I pushed God away. I didn't understand WHY we had to go through this trial. After a while I realized this wasn't a trial that we could be removed from. It wasn't something that would just go away or get better. We had to ride this to the end. We lost our house. In a chain of a ton of very unfortunate events we weren't able to pay for our house and it went into foreclosure. This has been something that I rarely talk about and usually only with people I am close to. I still have family members who I'm assuming know but I have never talked to about this. In Idaho, after you have been on it a certain amount of time, they are legally allowed to drop you in pay. Now we had issues with our workman's comp person assigned to our case. She was new to the area but had done this same job in a different state. She was rude. She was brutal and she was a trial in and of herself. She made our life a living hell and after a couple months stopped contact with us altogether. We had to hire a lawyer just to get our paycheck. When you get put on workman's comp, your pay is decreased by about 50% depending on your tax bracket. We actually were decreased by over 50%. A little over a year after Shaun had been hurt, this adviser made the decision to cut back our income. We knew it could happen but were reassured by our lawyer (he had been a workman's comp lawyer for 25 years) that he had never seen anyone have less than 100 maybe 200 dollars taken away from their monthly paychecks. It just so happened that we got lucky and had around 800 dollars removed from our paychecks (monthly) instead of 100 or 200. That was a really tough pill to swallow. The lawyer told us that he had never seen that before and was thinking that this advisor was pushing her weight and pull around, making an example of us because we defied her by getting a lawyer. (previous comments made to the lawyer from her made him believe this) Yet legally there was nothing we could do because the law did not state a specific amount or percentage that they were allowed to or not to deduct. At the same time this was happening, the bank decided to raise our mortgage by almost 400 dollars a month. Our house went up and our income went down. Shaun was not allowed to legally work and I was a few month pregnant with Blake and SO SICK. (maternity shots when I was pregnant with Blake. This is a typical family shot!) I had all day long morning sickness and could barely function. I remember sticking cereal and bread down where the girls could reach so they could have snacks while I slept on the couch. Things felt SO unfair. But I knew I couldn't change our situation, we just had to ride it through. The dr we had in the beginning told Shaun, "you'll be off 6 months tops." We held on to those words for the longest time until we realized every word that came from his mouth would never happen or never come true. Shaun will never be able to run and play with the kids like he used to. He won't be able to pick them up without pain so intense he winces and cringes (yes even our youngest child who weighs barely 22 lbs is too big) He will never be able to be the dad he once was. We are STILL riding through this journey. When we realized we couldn't save our house, we decided to short sell it. We fought the bank for 2 years and they did everything in their power to make sure a short sale would never go through. In recent events, we have come to realize that although we were told our house auctioned off on Dec 31, 2013, it actually sold to a buyer a week or so before it went up for auction. This is hard to talk about. I feel numb having to explain. This. is. embarrassing. Unless you have been there you don't understand the judgments and guilt you feel. I didn't want our house to go, I didn't want to look stupid to hundreds or thousands of people but I did. It was our fault that all of this happened but we chose to ride things through and rise above to find out where our story would take us. About 8 months before Shaun was finished with workman's comp, Blake was diagnosed with Eosinophilic Esophagitus. EoE for short. In a later post I will explain that more. WE prayerfully made the choice to move to New Mexico, as there was a (supposed) great specialist in Albuquerque just 3 or so hours from where Shaun's family lived. We moved there and struggled. I missed what felt like my home. I missed my husband who was still in Idaho and would be for several months after the move. I missed my friends. Knowing that my son was getting treatment for his disease was what kept me going. We lived there for almost 3 years when Shaun's company decided to transfer us to Greely Colorado. I love it here. This feels like home. This is our home and will be our home. We may move within this area but we will stay HERE til we die! So back to last week. I was posting about feeding tubes and bringing awareness to light when I snapped a few extremely cute pictures! I love that my kids can do anything while getting their feeds. They aren't tied down and they can move and jump and play just like any other child! Blake and Payzlee don't know they are different. This is our normal. This will be our normal, forever. We may not have feeding tubes for the rest of our lives but EoE won't ever go away. Blake's allergies won't ever fade, and doctor's appointments will stay regular. This is a journey in our story that we will have to ride through forever and ever. Am I sad about this? Occasionally I am; when I realize we can't do certain things with food I get sad. Do I hate it? Some days I do but I have learned these trails can't and won't define who I am, who my family is, who we are now and who we will become. We are amazing, and we are The Pruitt's. Our life is PERFECT just the way it is. Now for some picture overload!!

Daddy Daughter Date

A few weeks ago the older girls went on a daddy daughter date. It was so official and so fun for them!! Here are the pictures I took of them! I am extremely grateful for a husband who will wear a hot pink tie and take his two very girly girls out on a dance date. He hates dancing so this was a big step for him!! These girls mean so much to both of us and they are growing into amazing young women!

Be someone's tender mercy

These are my tubies. Blake has a gtube while Payzlee has an NGtube. Payzlee will be getting the same kind as Blake has this week. As I try to create an atmosphere of peace with the anxieties of upcoming surgeries this week, I decided to take all 4 kids by myself (Shaun was working) to Stake Conference this morning. There wasn't supposed to be anyone but our ward there so I didn't think Blakes sensory would be worse than any other Sunday. There were quite a few more people then I had anticipated. We made it 1 hour before Blakes sensory made it too much for me to bare. While we were at church one of our friend's little guys wondered over to play with our kids. He's just over a year old and is the cutest little guy EVER. Blake tried so hard to get him to talk to him. He tried hugging him, waving at him, and talking to him. This little guy babbles and smiles! He's still in the "melt your heart by expressions" stage. Blake turned to me and said, mom, he doesn't like me. He won't tell me he does so I know he doesn't. I chuckled to myself as I looked my little boy into the eye and explained that he didn't know how to talk yet so of course he couldn't tell him how much he really liked him! Blake seemed very satisfied with this answer and went on quietly playing. However, my mind started turning. Because I don't like to open up to people about all the things we are going through, most times I tend to just stay quiet or only talk about the subject at hand. I don't go out of my way to talk to certain people at church (most people) I don't sit by people and want to get to know them. I try to keep to myself because it's better then explaining who I am and getting the typical "you must be so tired" and "i dont know how you do it" responses. I'm not saying those are bad. They aren't. People care and that's how they show they care, by responding. I just hear it daily, sometimes several times a day. I have heard in the past that people think I don't like them because of how I have come off by not talking. They take it as I'm snubbing them off. This is where my thinking led. How many times have I come off with the attitude that people don't know if I like them, because I don't say anything. Now this post is not a "people don't like me I don't have friends" type of post this is more of a "trying to think like the Savior" post. If I keep to myself and don't ever share who I am, how can I bless those people who need it and how can those who need to teach me, bless me? How will those people know that I love (like as Blake said) them and want to know them if I don't speak to them. In our last ward, they did something AMAZING, in my opinion. They had a rule. It was a "no sister left behind rule" every week before the lesson would start, everyone would look around and if anyone was sitting alone, people got up from their chairs and sat next to those who were alone, so that they would never be left behind, forgotten, or alone. So many times in life, we might find ourselves feeling a little less forgotten and alone if we would open up to someone and let them feel a little love. Here is how my week ties in with this. Unless you deal with medical on a regular basis you will never know how alone you can feel just by entering a hospital or doctor's office. Until you sit on a chair waiting for your child to come out of a surgery/procedure, you will never know how alone you can feel in a crowded place. How the smell of medical gloves or guaze pads or iv poles can make you hold in tears. How when everyone goes to sleep at night and you're in the hospital room laying wide awake how empty the room is and how long the hours during the night drag on. I remember once when mylee was in the hospital 3 years ago, she had a neighbor who looked pre teen. I don't know what was wrong but I know she was often let alone as I assume her parents had to work. I felt strongly we needed to do something for her so we bought her flowers and gave them to the nurse to give to her. Mylee colored a picture and we wrote a very sweet note to this girl. Mylee was so happy to have served someone who seemed so sad and all alone. Not long after, the nurses brought in a few balloons from the girl next door. Oh mylee was beside herself! It's the little things that mean so much sometimes. When we flew to Denver for testing this last September, Shaun and I were waiting for the shuttle from the hotel. I was talking with the girls on the phone letting them know Blake hadn't gone in for his surgery/procedure but I would call after we got done. Blake doesn't do so well with anesthesia. He has stopped breathing during it do a "simple medical procedure" with Blake is no longer simple and short. It is agonizing and long. 15 minutes seems like hours and the taste of bile often enters my throat before they can update me on his progress. Putting any child under us not ideal but for Blake it is even more of a struggle for me to do so. Anyways, while we Waited in the hotel lobby, this sweet couple sat playing with Blake and trying to distract him from his hungry tummy and fussiness. she was pregnant with their 1st child. They were in their 20s. She said she over heard me and asked about our story. I briefly went over things. Mostly my normal response when strangers want to know things. The girl then looked at me with tears in her eyes, and asked if they could pray with us FOR US. I was dumb founded. All morning I had been praying for a tender mercy; to not feel alone. I felt the need to open up to this young couple. I learned that they were visiting the hospital as well, as their unborn child had a heart defect that more than likely could not be fixed and their 1st baby would more than likely die. This couple was such a blessing to me. They reached out and blessed our lives and let us know that we were liked and loved, without asking for what I would assume, was a much needed tender mercy themselves. I have often thought about how Heavenly Father sends us into people's lives when they need us, and takes us out and away from them when they no longer need us. Oh how I am grateful to realize that I need to be better and I need to open up and speak and let others know I "like" them just a little bit more. As I go in to surgery Tues and Wed I am going to pray to be someone's tender mercy. One of those days I will be on my own so as I will need a tender mercy myself, I will pray super hard to be someone else's first.

My Story

I have decided to start up my blog again. It's been a while!!! I will spruce up the pictures and stuff when I have time but for now I'm going to write because I need an outlet. I was talking to a friend today and she happily exclaimed, "I think I found your new motto!" Now I have been thinking for a month now what kind of motto I could have for this new year. She told me, "I can do anything for a day." after that you say, I'm fine right now but I'll let you know if anything changes. YEP that's my new motto!!!! We talked back and forth. I opened up about my resistance to letting people help me. It isn't a selfish reason and it isn't necessarily a pride thing. I have a hard time letting people know who I am because when people know what I am going through they feel obligated, in a sense, to help me. Now I'm not meaning or saying I think people tell me they want to help and then don't want to. I honestly believe that those who ask and offer truly mean it, but everyone goes through their own struggles and my life is more than some people will ever see in their whole life time. MY LIFE IS OVERWHELMING. MY LIFE IS HARD. But boy do I love my life. Boy do I absolutely LOVE being a mom and feeling the love in return from my 4 little stink pot children!!! I feel like when I let people in I overwhelm them when I allow them to help. I have felt this way for many many years; since Shaun was injured. My friend told me that she used to be the same way as me in a sense...It's easier to just not say who you are and overwhelm everyone else with what's going on, until one day as she was sitting in Relief Society and every week her president would get up and tell everyone how important their stories were. She would tell everyone that they had amazing stories and encouraged them to share their stories with everyone else. This hit me hard. I don't share my story. I don't let people in to know me because I don't want the burden to be on them. I had a Bishop tell me once that we go through trials to help others. Say what? I have to struggle so one day I can relate to someone else?? And then it hit me. One day down the road whether it's in 5 days or 50 years, there will be someone, or multiple people who will need me to be their rock or sounding board as they go through the same struggle that I went through. As much as I hate it, I have a few people who have struggled through trials FOR ME TOO. So I decided, after 4 years, to reopen the blog and share "my story". Let me start off with something more recent.... We started off last year in a good spot Shaun had a job we had a place to live and we had 4 beautiful children. I had just started home schooling and I was loving it. As the year went on, things started turning. That isn't to say I didn't like last year but it was a challenging one for sure! Blake stopped growing and so did Payzlee and our family made the very hard decision to go out of our comfort zone and change specialists. Our new specialist would be 8 hrs away. We prayed so hard to know if this was the right thing for us and we felt so humbled that we were given the opportunity to travel and find this set of specialists. As the year went on Shaun's job transferred us from New Mexico to Colorado. We felt so inspired to move. I knew we weren't moving for Shaun's job but that our family was moving to be closer to the specialists we had just seen. For about 6 years Shaun and I had said we wanted to end up in Colorado, to settle down for good, but we thought that was just a dream. We never thought we would ever follow through. Here we are. This place IS home. It feels like home. It smells like home. It looks like home. I don't know what I envision home to look or smell like but everything about Colorado feels like home. By October I was watching my son not eating and I started crying. no amount of bribery or pleading could get him to eat. Blake has Eosinophilic Esophagitis. Food is bad. Food isn't a good thing for him. I doubt it ever will be. When Blake was first diagnosed with EoE, we were told by 2 drs to never place a feeding tube....that if Blake got one he would have it for life. I cried daily knowing that we were headed down the feeding tube tunnel. I felt so alone. I know people who have, or their kids have, feeding tubes, but the decision to place one in my son DEVASTATED me. Just looking at Blake I would bawl. After a month of watching Blake starve himself I made the extremely hard decision (after countless nights of pleading with the Lord to make him eat) to call the dr and make the appointment to talk about placing a Gtube. Blake had a gtube placed a week later and it was the best decision of my life. That isn't to say it isn't still hard. I have guilt over it. I still cry over wondering why he has to have it. I know why but I want to know WHY. Payzlee is believed to have the same disease as Blake. We put her on formula and she started gaining her weight back and getting stronger. We knew she was aspirating (swallowing liquids and thin foods into her lungs instead of stomach) but we didn't know just how bad it was. Blake aspirated and she showed very similar signs. Blake was given a thickener to add to his liquids and thin solids and he thrived and did great with it! I knew the signs of severe aspirating were infections and respiratory issues. Payzlee had not had any of those so I thought she was just fine. Payzlee failed her swallow study. So much so that both thickeners (one thicker than the other) were both going straight into her lungs. Everytime Payzlee drank one of her 6 bottles a day ALL of the liquids were going into her lungs. We were not allowed to leave the hospital that day. We were admitted for an emergency NGtube. I was blown away. how could this be? I asked the dr. He said she was silent aspirating meaning showing no signs. It's rare to be as bad as her and not show signs but it does happen. We stayed over night in the hospital. As I lay in the bed I thought about the possible burden I had put on my friend to watch 3 of my kids overnight. She had never even seen Blake's feeding tube yet there she was hooking up feeds as I told her what to put in the machine. I cried. I thanked my Heavenly Father for her and for letting me put my guard down and ask her for help. I felt awful for putting so much on her. Yet at 4 am as I talked a sobbing little boy down to not crying, my heart was so full and so at peace that I made the right decision to allow her to serve me. She's totally going to heaven for that night!!!! We went to Payzlee's dr. appointment on Monday and we were told what she has is more than likely not Gi related but instead a malformation of nerves in her throat. Either they didn't form, didn't form all the way, or are malformed. She needs to have a gtube placed immediately. The doctor made sure I understood that this was a very long term thing. This would not be short and to put it nicely, it would be "years" with her having a feeding tube. It was such a hard decision to make to have a feeding tube placed for Blake. It took 2 years of praying and him starving himself for me to realize he needed one and wasn't going to change things on his own. Yet, with Payzlee I was being told this wasn't our decision and she would have it for years. Infact, with Blake we talked about how it's up to his body as to when it comes out. When he wants to eat we can wean him off the tube so could be months or years but it's not permanent. It will never be permanent. With Payzlee, we didn't have that talk. We had the, "this is a long term, VERY long term thing." I feel numb. I do. I feel mad that I couldn't make the decision yet I feel SO GRATEFUL and humbled that we have the ability with doctor's and medical equipment to keep my child SAFE, alive, healthy. This next week will be tough for me. Blake will have surgery on Tues. He has ,major granulation issues that we haven't been able to resolve (we have burned it 3 times with zinc oxide) so he has to be put under to get it taken care of. The doctor said it is far too painful to do while awake but he needs it done. Also they scheduled Payzlee's gtube as soon as there was an opening which just so happens to be the very next day Wed the 28th. I am terrified. Blake has had reactions to anesthesia where he stopped breathing while he was under (they had to breathe for him) so surgery scares me. I often wonder what kind of a person and mother am I. Can I do this? Can I make it through the very hard 3 days I have ahead of me? (Oh did I mention that I'm dealing with adrenal fatigue and have been for a few months now but I just now started taking meds to help my body heal??!) The hospital is a VERY lonely place. It's either too cold or too warm, it's quiet, and solomn and SAD. Everyone's always sad. You never know what kind of nurses you're going to get and I don't know about anyone else, but hospitals are haunted!!! So many people die in hospitals every day and at night I hear those people wondering the halls. IT'S CREEPY!!!! And I hate it. But I love my children so for them, I will lay in a hospital bed and hold them while they sleep as I listen to footsteps, and creaking, and random voices and doors opening! Next week will be hard but each day I will say to myself, "I can do anything for today."