Sicko Once Removed

These are my babies, granted this was a few weeks ago when my kids had crazy hair that made them look younger.

Kyle and Aiden have diagnosed eosinophilic enterocolitis, GERD (reflux), and periodic limb movement disorder (PLMD). Kyle also has diagnosed anxiety and ADHD. Kyle is triggered by dairy. Aiden is triggered by dairy and gluten. Both experience flairs and disease process unrelated to food triggers. Both are on an antacid, a sleeping pill, and an immunosuppressant. Kyle is also on a motility drug. Aiden is on an antidepressant used to treat severe abdominal pain on a nerve level. Charlie also has GERD (reflux), and she is struggling with gaining weight. She is on a reflux drug and struggles with self-soothe. She just is not thriving. And I see a road very similar to Kyle's in her future.

That makes me a mother of three sick children. Three diseased children.

And so begins the problem, because I can't seem to even find a good way to describe or classify my children. Sick? Disabled? Diseased? Compromised? Chronic? Affected? Patients?

Kyle is my oldest, smallest at birth, most affected medically. He struggles. He struggles with behavior. He struggles with food. He struggles with memory. He struggles to feel loved. He is my difficult child in so many ways. But Kyle is also brilliant. This was his most recent present because he asks questions like how do red blood cells come from the inside of a bone and into the circulatory system.

For Kyle, I read "The King Follett Sermon" in order to read to him the parts about the nature of God. Kyle had asked me, "Did Heavenly Father live on this earth?" I wanted him to make his own decisions on the answer.

Kyle is my sickest. We are at nine surgeries. Nine. At five. Nine. Nine. That number scares me, because it is only within three years. Nine. Nine times with the mask. Nine times on the table. Nine times. Do you know part of our doctor kit at home involves tourniquets from blood draws and masks from anesthesia? Kyle explains how to use these to his younger cousin who comes to play.

My Kyle is brave. And as his parent, I've held him down while willingly allowing doctors to cause him pain. I've held him down while they have shoved a tube up his nose. I've held him down while that tube has caused him to bleed. I've held him down while they've shoved another tube up his nose to measure acid. I've held him down while they have dilated his stoma (hole into his stomach) and shoved his button back in. I've held him down and said, "Go ahead." Go ahead, hurt my child. I know you are going to hurt my child and I say go ahead. And I do this by myself. I do this because my husband can't be at the numerous appointments. I do this because who wants to go with me to all the medical things we do. I do this alone 98% of the time. I say, "Go ahead." Go ahead and hurt him. I make sure Kyle knows it will hurt and I say, "go ahead."

I'm the mother of sick children. I am the mother of doctors visits, tests, labs, paper work, jargon, drugs, procedures, and surgeries. You don't know what it means to be a mother of sick children. These are my feelings and I want to explain them to you, but it is like trying to explain how water feels....wet, slippery, slimy, cold, warm, wet, changeable, and ever moving.

My Aiden. My Aiden is my baby, even though he isn't. But I've never met a sweeter, snugglier, lovable boy. He is infatuated with Charlie. He is malleable and easy going and makes a great playmate for his cousins. He is so sweetly and sincerely remorseful. He was big. 9 lbs big. He grew on target. But now. Now not so much. Now we've plateaued. I think, when did we last change the size of your clothes? Why don't you feel bigger? Why do you still fit so well on my lap? Why are you not eating, when several weeks ago you were always ravenous?

Upon hearing his heartbeat today through the doctor's stethoscope at his appointment today, he said, "I hear the beat, beat. My heart is pumping my blood." My three year old. My three year old knows. I worry. I worry about why he is so tired. Why he lays on the floor. Are the drugs not working? Is he telling me his stomach hurts more than usual? Is this vomit disease progression? Does this warrant zofran? Why is he getting out a vomit bowl for bed so frequently?

Why does he spend all morning crying? Why does he cry all evening? Why is he regressing on independence? What changed? Not his diet. How do I comfort him? Where did he go? Why does he hurt? How do I discipline him, while recognizing that he is not my Aiden? Does anyone know?

Charlie is my newest baby. Right in the middle of my boys in weight. Sweet. Calm. Lovable. It is hard to win a smile from her, but the smiles are so sweet. Her nose is such a smile button. Her face screams to be kissed. Even my niece, at 18 months, knows she is something to be protected and loved on. And oh, is she loved on. Yet, she earns the gold medal on slowest eater! A few ounces in 45 minutes. My patience for her slow eating does not even light a candle to her patience for toddler love and play.

We quickly moved her to hypoallergenic formula. She just wasn't tolerating my milk well. The Church's statement on breast feeding states something to the effect of a baby is almost always able to tolerate their mother's milk. Although, I know that my children happen to be in that small percentage that cannot, it hurts. It hurts that I cannot breast feed my children. I wonder if people who see me in public with a bottle know...do they know that I strongly support breast feeding? Don't they see? Don't they see that it is not my choice? Don't they see?

I see her face. And I love her, but my worries: when did you poop last, why does it keep changing consistency, does it seem oily today? Why were you eating 4 oz bottles, 6 times a day, and although it took you a long time, you did; now, getting 2 oz in is such work of coaxing? Why? Why did you become fussy?

The doctor upped her reflux medication today. He changed her formula. He suggested we buy a caloric enhancer for her formula (which we immediately did). We go back in a week to see how she is doing. Right now she is 25% for height, but only 3% for weight. That means Charlie is way too skinny. She hasn't been growing at the right rate; her percentiles have dropped significantly in the last month.

Almost daily someone mentions, "She's so tiny." They see it as dainty, petite, sweet. I am reminded of her growth at every mention. How her clothes aren't getting tighter. How her eating has dropped off. I see surgeries in her future. I worry about the need for a feeding tube. I know how this could go.

I want you to know, most days, we are a normal family. Visits to the zoo, aquarium, and IKEA. Kyle takes karate. Aiden never stops moving and has mastered most every sport on the Wii. Kyle is learning to read and Charlie is strengthening her neck muscles. She likes to be worn. I make freezer meals and worry about keeping Kyle from ripping holes in his pants. And do mountain and mountains of laundry. Normal. Normal. Normal.

Yet, when you find out, you had no idea that my children were sick. Of course you didn't, we are normal. Now, you look at us differently though. We are not heroes. This is just our life. We don't need your pity. It's our normal life. I always carry the necessary medications, I plan our meals and snacks if we are out. Kyle knows what he can and cannot eat and Aiden is learning. Even their cousin knows their specialized diet. I stock their foods at my in-law's and my sister's houses. This is my life. I am nothing to be applauded or told how strong I am. If this was your child, you would do it to. You would. You would step up, without a thought. We are their mothers.

And yet sometimes, when I drive along the eastern bench on the way to Primary's or home from an appointment. Sometimes after surgery when I realize how normal this is. I cry. I cry because I still mourn the loss of "normal" my children will never experience. My Aiden has never had lunch from the blue box of macaroni goodness. My children don't eat cheap McDonalds ice cream cones. Aiden and Kyle have only had donuts once in their life, ones I made that were nothing like the light yeasty goodness I regularly crave. Their lives are different. Will they serve missions? Will they need bowel resections like many Crohn's patients? Will Kyle always have a button?

Kyle starts kindergarten this year. I've started the paperwork. The special forms. The doctor's notes. I had to mark him as disabled for the first time in his life. He is. He qualifies. And yet, I've never thought of him that way. But I do see people stare when they see his button. I know most children have never seen a button. I know his preschooler teacher told his class, "he has a tricky tummy." I know he will stand out. I know attending primary activities will be difficult with all the church pizza and cookies. How will this go? He'll be the kid who has to go to the office every day after lunch to have a bolus feed. Can his little body with a compromised immune system handle the germs? How can I take care of him, if he is gone 8 hours every day? Will I have the knowledge to tell his doctors what they need? Do you see?

Do you see? I thought this time around with Charlie I would be ready. I thought, no biggie deal. Just another one to take to doctors and visits. Another prescription. No biggie deal. But it hurts. It hurts more than I expected. But I don't want pity. I want you to see. It's okay to ask how their health is. It's okay to be concerned. I like people who want to know how appointments go.

But when you ask if you can help, the answer is no. You've never dosed their medication. You've never seen me use their pump. You don't know their diet restrictions. You think it is easy to be gluten and dairy free, but things are sneaky and complicated. Like soy sauce, only few are gluten free. Eggs in restaurants are often mixed with milk. Did you know? Do you know malt is a gluten substance? I trust my mother-in-law, I trust my sister, I trust my sister-in-law. I've shown them. I've told them. I know they know. But you don't know. You've never seen.

If you want to help, I need friends. My kids need friends. I need people to know we are normal. Teach your children, my children are normal. The button is normal. Their diet is normal. They are still children. And your venting, your worries in life, your trials, your children; I want to hear about it. I'm not judging. You are also normal to me and I can be your friend.

**And if you read this far, congratulations, I hope this helps you understand what it is like to be the mother of a sick/different child**

Who Needs Parents???

My sister is my only close friend since we have moved. Our ward is very difficult to make friends in and I haven't had the energy since I've been so sick to work very hard at it. Heidi lives super close and it is just easy. We get out kids together so we can cook/bake/clean/gossip. We eat meals together when our husbands are working. Aiden thought for the longest time the baby in my belly was his cousin, Heidi's daughter, Baby Claire. We flow together well with how we parent and I back her and she backs me. We have similar tastes for decor and clothes and organization. Things that I have avoided, like organizing my pantry, are easy and fast when she is around. She has been a life saver so I haven't shriveled up and died from being lonely and bored.

As much as I love my sister, she is the only one that I talk to in my family. And you know what, I don't miss my parents. Obviously, I have no control over a relationship with my Dad since he died 18 months ago. However, right after Thanksgiving of last year, I told my mom I needed her to leave me and my family alone. I've seconded guessed that decision a lot in the last year, but I am so happy and I don't miss her. You know why?

I have Evan's family.

I have called my in-laws "mom" and "dad" for years. We drop by whenever we are missing them and many many dinners have been eaten at their house. They are patient with our loud, LOUDER,  LOUDEST, in your personal space, interrupting children.

Any time we are struggling or need support--we go see Mom and Dad. I always miss chatting with her when we haven't been over in at least a week. When we had no car the first few months we were married they would pick us up to go grocery shopping, go to the hospital, have dinner and do laundry at their house. We wouldn't have survived this summer without them being willing to come across town and stay at the apartment in the middle of the night so Evan could take me to the ER----6 or more times in 4 weeks.

And since I was the first one married in, I feel like I've been there for so much growth in the family. When Zoie was 12 and would tell me how much she liked a girlfriend of Evan's and wished they would date. Now she is 18, in college, and we proudly hang several pieces of her art on our walls. Avery graduated college and is close to graduating vet school. I saw Nolan go on his mission and come home to internet court Zaida...and now they have an almost 3 year old. I feel privileged to be the one who has/will hear the details of their first date with their spouse/how they met, followed every pregnancy, seen them all eventually graduate college and pursue life goals. It's been a ride...my first Thanksgiving Mom didn't ask me to bring anything and no one ate the pies I made. This year...Mom asked me to bring multiple dishes, although she probably still won't eat them :)

It's just nice to have a comfortable place to fit. I have more of a deep lasting relationship with Evan's family than I did with my own parents and brothers. I've seen the trailer park in Colorado that Mom and Dad met in, I've seen their house in Oklahoma. I know most of the stories when they reminisce, although I still don't track with Evan's grandparents stories involving second and third cousins of theirs. However, I'm okay with that.

I love my place in their family and I wouldn't change it for anything. I love Evan's parents and being in their family has made it so I do not miss my own parents. As I'm about to have my 6th Thanksgiving as part of this family, I'm happy. I'm happy to be there, I'm happy to be a part, I'm happy with my family. I look forward to this time of year with them.

Boo @ The Zoo

We went to Boo at the Zoo today. We had never been before and we probably won't go again. We got there for the 8am opening for Zoo Booster members. Even getting there early it was already quite crowded and we had to wait in a line that wrapped around the parking lot to get into the zoo. The whole trick-or-treating things was really waiting in lines throughout the whole zoo to be given candy at different corporate sponsored booths. We left after an hour, having been to the lines that were manageable and seeing the few animals that were out or in warmed buildings. By the time we left at 9, which is when it opened to general members and the public, the zoo was one long line from booth to booth. If you didn't stay in that line there was almost no way to get back in. 

 

We rode the carousel before we left and that was the only opportunity I had to get pictures. While I think the boys would have stayed longer, my body was beyond done and I paid for that excursion for the rest of the day. It was quite chilly. I thought I was fairly prepared and I just wasn't. I forgot how much longer it takes for the sun to come up over the mountains when you are in the shadow there, and there was enough breeze. Aiden was in a full body costume, with gloves and a hat and he was still cold. But they braved on. Aiden hates to ride an actual animal on the carousel so he is crying in these pictures--unfortunately, the benches had already been taken.

Chocolate Cookies (Dairy-free, Gluten-free)

A Fall FHE at the Park

A Week of Fall

   

On Tuesday, we were able to go to Tracy Aviary on our pass of all passes. It was an amazing fall morning and we saw lots of birds including the owl hollow, fed ducks, fed swans, fed pelicans, and finally fed the sun conures. It was a lot of fun. I made it through fairly well with only needing to sit down a couple times and since it is fall break for Evan, we were able to go because he could help me with the kids.

    

If you ever go, feed the sun conures. One of the rules is that you have to stay still because the birds will land on the ground and you don't want to step on them. It was hard for Aiden to stay still and when the birds would fly towards him he would get squirrely.  So I held his arms and he had a ton of birds. Kyle was a perfect statue, but the staff still had to bring birds to him, and after a few minutes, Kyle got scared and wanted to be done. Overall though, it was my favorite outing of the week. 

On Wednesday, I took the boys to Gardner Village, which is a quaint little shopping village made out of old polygamist houses and historic houses right around the corner from our new apartment. September and October is a big time of year for them and they go all out on witch decorations. For the past several years, since Aiden and Addison were born, my sister and I have taken our kids there in their costumes for some awesome photo ops.

 

   

Unfortunately, it was a hard day for my breathing, I couldn't stay long. We got some pictures together---but I am too lazy to try to get them on here. You can see Addison in the corner on the last picture. If you could see Claire (who does not like to smile for pictures), she is the cutest little one year old watermelon around!!! 

On Saturday night, we made the annual pilgrimage to Cornbelly's at Thanksgiving Point. Last year, we did more of an afternoon adventure--this year with the boys in love with Halloween and Aiden loving to be scared---I wanted to go in the evening/night. 

 

   

 

It was fun. We did the hay ride, see all of us above. We did lots of cutout pictures, we did some activities, and we tromped through the corn maze under the full moon. By the end of a few hours, my body began to protest loudly, Aiden was melting down, but Kyle was still unsatisfied. Next year, I'd like to do our favorites and try to get in more activities (They have so many there). I think we need an afternoon & an evening & a night to get it all done. But it was not disappointing in the least. They got free baby punkin's on the way out and Aiden even slept with his once home.

It was such a nice fall week. It is my favorite week of the year. It was the first we have been able to get out and do some seasonal activities. It was such a good week, and lived up to adding to why I love this time of year so much!

The Summer of Pregnancy Recap

It has been a year. It has been a serious year. A year that started of with a move, an impermanent move to a friend's house. If that wasn't hard enough living temporarily with all your things in storage, I found out I was pregnant in the middle of May. It was exciting news. Something Evan and I had been praying and working on for two and a half years.

I know that my pregnancy with Kyle was rough; however, I had no one else to take care of and although my house wasn't unpacked until the day that I left to give birth to Kyle (8 months, in case you were wondering how long we lived unpacked), I could lay in bed all day and vomit to my hearts content. Aiden was a dream pregnancy with only one episode of vomiting. I had him at home and I thought, my other pregnancies would be like that. I thought Kyle was a fluke with my gallbladder.

Then we moved into this new apartment, and it was all down hill from there.

I found out sometime after Aiden was born that although I did not have a gallbladder anymore, I could still produce gallstones in my common bile duct.

I had several attacks that would take Evan and I to the ER for pain medication and anti-nausea drugs. The first time I had one, a few weeks after I had Aiden, I remember crawling down the hallway when we lived in our apartment in Taylorsville and wondering what it could possibly be. I had already had my gallbladder out, was it my appendix. These attacks came about 9-12 months apart for the next several years. I thought there was nothing to do but live with them.

Then after I got pregnant with this baby, I knew that it was turning out to be a lot like with Kyle. I was sick. Everything I ate came up, the thought of food turned me off and eating was becoming increasingly painful. I talked to my OB about it, he referred me to a GI doctor that they use frequently. In the meantime, waiting for that doctor's appointment, the ER visits started. I was taking in 300 calories a day, but not all of it stayed down, and a few ounces of liquid a day. I began to lose weight. 

It turns out the doctor they referred me to is the doctor that before I was pregnant with Kyle never referred me to have my gallbladder out, cost me thousands of dollars of tests that never showed any issues with my gallbladder, the doctor who had me have exploratory pelvic surgery, and who finally said I needed a psychiatrist because the pain was in my head. Awesome! Such my luck. The tests he ordered, showed nothing, he was unwilling to admit me to the hospital when my OB wanted to. He wouldn't prescribe me any medication. He finally said, I am done, nothing is wrong.

I saw another GI. He was so nice. But had no room to take me on as a patient and told me the problem was the pregnancy. He would have done a simple scoping procedure to cut open my bile duct and flush it out. Unfortunately, the complication is a 10% risk of pancreatitis. If the pancreatitis occurred late enough in my pregnancy--the baby could die. I had this confirmed this with several doctors who had actually seen this happen to some very unfortunate women. Plus, to top it off, of course, none of the tests ordered confirmed anything. He said come back after I am not pregnant and he would take care of it. 

So I was stuck. And seriously sick. Evan wasn't going to work. I wasn't able to shower. I wasn't getting out of bed. Aiden was learning to bring me his sippy and the soy milk tetra to my bed. I had moved snacks to a shelf they could reach. If the kids were dressed by dinner, it was a good day. Every week, we lived out of the clean laundry basket without it ever being folded or put away. I didn't cook dinner for my family between June and well.....now. I am up to cooking once a week. 

The change came when my OB ordered me home IV fluids and anti-nausea drugs (zofran). This allowed me to take my pain and stronger anti-nausea meds by mouth and keep them down. As I kept blowing IV lines in my arm and under advice from my home health nurse, I asked for a PICC line....

It is a line that goes up my arm, across my shoulder and terminates right close to my heart. They are designed to last up to 12 months. They are used for all kind of conditions such as cystic fibrosis and cancer. I immediately started having some other complications. They landed on a nerve, it took several days to move the line enough to get the pain to stop, I have an adhesive allergy and had to use an adhesive to keep my site sterile--itchy, then through advice from the PICC placement nurse and my home health nurse I was flushing my line with saline. It clotted off, that Saturday I spent 6 hours in the ER unclotting it. Several weeks went by. 

I was getting out of bed. I was folding and putting away laundry. I vacuumed. I cleaned the tubs. I went four weeks without vomitting. I gained the few pounds I lost and 4 more (at 25 weeks I have still only gained 4 pounds total). Then one of my lumens (the orange and white lines coming out of my PICC) started to leak. 

I had to go back in and have it replaced. Luckily, they did not have to totally pull it and replace it, just run a wire up it, pull the line, and thread a new one. It was uncomfortable and took a few more days to get the line to move off that pesky nerve. However, it could have been worse. 

Then on Saturday, I couldn't get a full breath. It lasted for an hour. I called the OB. He said I had to go into the ER because with the pregnancy and PICC line, I could have a blood clot. Evan dropped me off, after an ultrasound and chest X-ray, it was confirmed. I did have a blood clot in my arm adjacent to my PICC line. They kept me overnight and started me on blood thinner shots.

Sunday morning, before I left the hospital. I told my nurse that my left arm had gone painfully numb. She said that was normal. I went home. The pain stayed. My mother-in-law thought my forearm was looking swollen. I called the OB. I had to go back to the ER and he wanted my PICC line pulled this time. I went, they pulled the line, they said the clots weren't there anymore, but I still had to keep up the twice daily shots. The pain in my arm did not get better and my other arm started being painfully numb too. 

My doctor the next morning confirmed the baby is fine. However, even without the PICC line I have to continue the shots twice daily. See the above shot. Twice a day. I still can't do it, luckily Evan is great at it. The needle going in is fine, but the medicine burns for thirty minutes and you can't rub it--plus they bruise like crazy. So now, with a pregnant belly that bumps into everything, it hurts because it is bruised all over. 

Not only that, but with the shots, I have to get frequent ultrasounds to check the babies growth. I also have to have a scheduled induction and continue the shots 6 weeks after birth. I also have to see the high risk OB to decide whether to do another PICC line and to make sure things are okay with the blood thinner shots. So that is what I know and don't know.

I think the worse thing is that I do not feel like myself. I feel like I am failing everyone with my limitations. I am costing us lots of money by being unable to cook most nights. I get lectures from ER nurses about how my pain meds cross the placental barrier and the baby gets them too. I feel like I am failing my boys. They should go out and do fun things--I lost all my opportunities to do fun things I planned this summer and fall is going by fast. Most days I don't have energy to take them out and play and Kyle desperately needs that. We have no friends in our new place after 4 months and our house still isn't unpacked. 

Every place that I turn points out how much I am failing. How far below expectations I am. Someone told me I was lucky that Kyle is 12 days too young for kindergarten, if he was in kindergarten he would be behind because he doesn't read yet. I frequently hear about how much house is not unpacked and totally put together. I make goals and plans, and they come and go without anything happening. And things keep changing, I had Aiden at home, this baby has to be born in a hospital, now she has to be induced too. It feels like it is out of control and there just isn't much joy to hold onto anymore. Not much to be excited about. Good meaning people tell me, "it will all be worth it." And while I am sure that I will love her and cherish her, she is only one of four other people in my family. The other three people have been ignored, disappointed, and affected by how hard this pregnancy has been--that might never be worthwhile. 

There is more to be said, but the meds are kicking in, which is why I certainly don't have many blog posts from this summer. I'll leave you with my arm without a PICC line, healing from the allergic reaction to betadine and adhesive.