Wednesday, April 30, 2014

One question.

It is easy to get lost in the days and lose sight of the moments. But the moments are the magic of motherhood that make the days joyful. We can not and must not let ourselves lose sight of these beautiful moments. Before we know it, the days and weeks and months and years will have gone by and we will still be worrying about keeping a perfect house or "getting it all done." At the end of the day, what matters most is so much more than whether we have checked everything on our to do list off or if we go to sleep on clean, freshly pulled-down sheets.

What matters in each day is that we really, truly loved the HECK out of our children, enjoyed just being with our families, and had a good, real laugh with them. 

Lucky for me, getting a real, good laugh out of my two-year old is easy. It just takes a little silliness, a little love, and a little time. It may be a little harder for me to have a real, good laugh. If I am too caught up in keeping our nap schedule, or using this one moment of down-time to execute my next task, I miss my chance. I miss my chance to let go and laugh and giggle and fill my soul with what really makes me feel happy and accomplished. At the end of the day, I feel content and peaceful if I've spent quality time with my family and taken the time to just enjoy them.

So I've found a good, easy self-assessment to see how I'm doing is to think back...

"When did I last share a real good, hearty laugh with my babies?"

If I can't remember the last time or it's been days, I know my priorities have gotten out of wack and I need to reprioritize and grab these little boys of mine and just tickle them and love them and laugh and giggle with them.

And at that precious little moment, life is good. They are happy. I am happy. We are building the unbreakable bonds of a family... and that's all that matters.

Sunday, April 27, 2014


Three years ago today, this happened...

I'm feeling grateful for everything I learned because of that experience and since then. I really don't think about this experience often, but I know it shaped me into who I am. I am grateful for the friends we had then and how that experience turned us into a family. I'm grateful that my husband and I (and baby Jude in my tummy) were all protected. I'm grateful for my knowledge of the Plan of Salvation that I know even those who didn't make it to see another day are truly in a more beautiful and wonderful place. I know this earthly life is a temporary leave from our heavenly home. This experience helps me remember that and that the things that really matter to me can't be destroyed by a tornado.

Read my story here!

Watch my story on CNN here.

Wednesday, April 23, 2014

EoE update.

long past due update on Jude's EoE needs to be done today because it will change tomorrow! Jude's last EGD was 12/26/2013. For the six months prior to that, we had eliminated

soy, wheat, eggs, dairy, nuts, corn, rice, potatoes, peas, beef, lentils, and mustard. 

We felt hopeful that that would be all it took to clear his esophagus of the eosinophils and have a perfect (or close to it!) EGD. That list included everything he tested even slightly allergic to in allergy testing, plus the lentils, which we just noticed he got hives every time he ate them. He had been nearly completely free of outward symptoms such as throwing up or hives.

"Quinoa bread"

This diet was difficult. Cooking was quite an adventure. We saw lots of quinoa, buckwheat, and millet. We would spend hours slowly searching each aisle of every health food store in town squinting our way through every ingredient list. Corn was my nemesis. Corn defiles everything. It was the most annoying thing. We couldn't have gluten-free anything. I thought about what a luxury it would be to be able to buy a gluten-free flour or mix. All gluten-free stuff has either potato, rice, or corn in it. We did get our hands on some black bean pasta that certain Whole Foods stores carry (100% black beans? Brand is "Simply Asian.") Not the stores here, though. My mom would bring them out from Las Vegas. We even tried some seaweed pasta. Not the biggest hit. It was clear and really slimy. (And zero calories. Zero everything. Weird.) 

The day of the EGD came. (It was originally scheduled for December 14 but had to be postponed because Jude got sick). We arrived at 7:00 and the EGD began at 10:00. Longest. Morning. Ever! They let us walk him into the room where the procedure would be done and meet everyone that would be doing the scope. They let him pick a stuffed animal from the shelf and he picked a little pink bunny. It was so nice to be able to go back with him but leaving him was just as hard. 

We waited anxiously in the waiting area. Dr Brigman walked out after a while and told us it was "not good." She explained that he had delayed gastric emptying (which we didn't know about), some residual reflux, and a still imperfect esophagus covered in plaques (looks like powdered sugar everywhere). His eosinophil count for his last EGD was 80. (It's like 80 million or something, i don't remember exactly). This EGD it was 25. Big improvement! But normal is zero. We met Jude in the recovery area. The anesthesia had NOT agreed with him and he was hysterically crying and inconsolable for what felt like forever. We were finally able to calm him down with a little juice and popsicles (that he really shouldn't have even had) once he finally gave in enough to try a little. Dr Brigman came around and talked to us again. We decided to give in and put him on all the medication we had been trying to avoid. We put him on a low dose of Erythromycin to help with the delayed gastric emptying, Pulmicort (a steroid to help heal the esophagus and keep the eosinophils out), and Miralax for his constipation. He was already on Nexium so we were continuing that but doubling the dosage from 10 mg to 20 mg. The Pulmicort is taken as a slurry. It is mixed with Splenda or powdered sugar and it coats the throat as it goes down.

We decided to eliminate his diet more, along with the medication, to heal his esophagus and get him better. It had been over a year that he had an unhealthy, damaged esophagus and we were willing to try anything. His diet was then changed to

chicken, turkey, fruit, vegetables (not peas), olive oil, sugar, salt, and pepper.

Nothing else. That has been his diet for the past four months with a huge emphasis on meeting his goal for his formula every day (where he is really getting all his nutrition). This diet has been a breeze. A store here (Sprouts) sells a rotisserie chicken that is just chicken and he really liked that for a while. It's usually a little chicken and a couple slices of fruit and that's his meal. I don't have to worry about feeding him nutritious or well-balanced meals because he gets all the nutrition he needs from his "milk." We had a follow-up appointment about a week after his EGD. That week he was taking in about 1/3 of his caloric nutrional needs every day. I was really beginning to worry about how he was going to maintain his health while not taking in nearly enough. The night before his follow-up appointment, Dan and I sat down and had a good long talk and were truly inspired to come up with a smokin' hot plan about how to get him to reach his goal. I'm going to go into it in case you or someone you know is in a similar situation and may benefit from hearing what we did. 

(Some grapefruit pomegranate chicken Dan came up with)

(Lunch was canned beets this day...)

This cake for his second birthday took hours and was truly a miracle!

He still talks about the "school bus bed."

Our doctor had told us he needed to be drinking 36 oz of his formula (Neocate Jr) per day. That was that. No tips, advice, or anything to help. That was a lot of fluid for a little guy. Not to mention a lot of the same strong flavor. At that point he was drinking about 15 oz a day. The goal seemed impossible. Up to that point we had been preparing the formula just as directed on the bottle. Add 4 oz of water to 4 scoops of formula. That equals 5 oz total. 

We sometimes would add a little less water so he would be able to drink it easier/faster. But then we found the measurement of "oz" to be an inaccurate guess. Shouldn't we be measuring the actual amount of formula ingested instead of the fluid volume? We did some calculations and came up with some figures. Jude's goal of 36 oz per day was equivalent to 1,071 calories. This many calories was contained in 29 scoops of Jude's Neocate. (One scoop equaled 37 calories.) Therefore, his daily goal of Neocate was 29 scoops. This goal was assuming he ate no regular food. Any regular food he ate was just bonus. That way we were shooting for the stars and able to keep a completely accurate count of how many calories he was ingesting and not have to count calories on food (which would be extremely difficult, time-consuming, frustrating, and inaccurate). (He never eats all of something. It's two bites of this and one of that.) 

We decided to start mixing his Neocate powder with anything and everything we could think of. Juices, soups, smoothies, applesauce, Popsicles, etc. We packed it in and made it much more concentrated than it said on the bottle.  We made it as concentrated as he would tolerate. We counted scoops and would record it every night in an Excel spreadsheet, as well as his weight every morning. 

This proved to truly be inspired, there was no way that little body could tolerate that much formula mixed only with water and that consistency. But by making it a little more concentrated and adding variety made it so he was able to take in a great deal more. Also, it says to not cook Neocate. We wanted to make him little cookie type things or have that option. I called Neocate and found out the reason it is not to be cooked is because it alters some of the vitamins and minerals. The caloric value is the same and (don't quote me on this) the main components of it (protein, carbohydrate, etc) are all the same. It was just some of the smaller vitamin and minerals that were altered. So if cooked infrequently, it was okay and the calories could still be counted. We made him little "pumpkin cookies" and things like that but not often because he didn't really like them and there was not a lot we could do to them to make them better as we had no flour of any kind (or anything else one would normally bake with).

Our plan worked! He started to get closer and closer to his goal every day. There have even been a few times he has even met and surpassed his goal! I figure if he is able to get an average of about 24 scoops per day, he gets the remaining few hundred calories he needs through food and juice. I'm satisfied if he reaches about 23 or 24 scoops. I mean, the Neocate is nutritionally complete. Meaning it contains everything he needs to survive and be healthy and is nutritionally balanced. How many two-year olds do you know meet their gold standard caloric goal for the day in a perfectly balanced and healthy manner? It is good. As time has gone on, he tolerates/drinks more and more. He is steadily gaining weight and so his growing body needs more. I am thankful evey day that he likes that Tropical flavored Neocate and usually drinks it pretty willingly. 

His average Neocate scoops for January was 21.6. For March is was 23.6. (February and April aren't working right now; I'll update later.) The trend is steadily increasing and getting closer to 29. We track his scoops, weight, bowel movements, and if he throws up. His weight on Day One of all this (1/12/14) was 24.4. Three months later on 4/21/14 it is 26.4. Pretty remarkable for a boy who can't eat hardly anything and has a very poor appetite. (Some people with EoE can't tolerate the amount of formula they need by mouth to stay healthy and they require feeding tubes. That is why I was so concerned at first and feel so grateful we came up with this plan and Jude is excelling (no pun intended) so much.)

Now to tonight. Jude had an appointment with his doctor on Monday and she was happy with his growth and how he appears to be doing. But the only way to really tell how he's doing is to get another EGD and obtain a biopsy for eosinophils. We are going in tomorrow morning at 7:00 and we are so excited and hopeful. I know I shouldn't get my hopes up but it's too late for that. I already have! Dan gave Jude  a blessing tonight and it was lovely and hopeful. We will be able to tell a little bit by how things look tomorrow immediately after the scope but we won't really know until the biopsy results come back, probably sometimes next week.

I truly feel blessed for Jude's health. It has been hard but it could be so much worse and I'm grateful that, overall, he is a happy, healthy, thriving child. I love him so, SO much and am so immensely grateful for our insurance, our doctors, nurses, dietitians, WIC (his formula alone would cost over $20,000/year), the stores that order in and carry Neocate just for Jude, the Neocate company itself, modern medicine, and all those who have helped him on his path to health. 

I am especially grateful to my Heavenly Father who watches over us and gives me strength to face each day with strength and stay positive as we try to get this precious little boy healthy.


("I hold baby, self, Mommy.")

Tuesday, April 22, 2014

two months of abraham.

Happy two month birthday little Abraham! 

I've been singing Happy Birthday to him all day. He is eating it up. :) He is the greatest little guy. He is a pleasant little soul. If only I had nothing else to do in life and I could lay with him for every nap, he would be the happiest baby on earth. That is the only thing that flusters him... trying to sleep alone. The travesty! He is completely uninterested in the proposition. We will sometimes squeak out a half hour or maybe even almost an hour of him sleeping alone, if we're lucky. Otherwise it's either in mother (or sometimes father's) arms or being rocked with vigor in his car seat/stroller. I'm just thankful for his Wubbanub, Occe. He loves that little guy. And so do I. He is seriously a happy, content little baby though. He still rarely cries (only for previously mentioned scenario). Tonight we were reading stories to Jude for bedtime and Dan was holding Abraham. Dan was talking in this funny voice (think Chinese convenience store owner yelling at rowdy teenagers) "get down right now!!!" (We were reading the part in "Go, Dog, Go!" where the dogs are playing badminton on top of the hot air balloon and the other dog yells "Get down!!") Abraham and Jude were both in stitches over Dan's funny voice. Seriously, when we are holding Abraham upright and his little face is squished down and he's holding up his head, his cute factor is just to the max. And then he smiles and... it's a little unbearable. You'd think he knew how cute he was and he was just trying to make us all fall in love with him. Especially this little bashful smile of his. If this is his plan, it's working. But no, he's just as innocent and angelic as can be. Straight from heaven. Whenever Jude plays with him or they "play" together, Jude just giggles beyond all get out. Abraham will give Jude a slobbery kiss or try to eat his toe or smile ("MIiiiLiNG!!! [most high-pitched, squeakiest voice ever]) and Jude just laughs hysterically and wants to repeat it a hundred times. Whenever we talk about how Abraham can play more when he's older, Jude will say, "blocks?" or "growing..." He really has his heart set on blocks with his bro. Anywho, back to the story. We were in the teepee tonight and were all just laughing and giggling. It was heaven. Abraham was literally laughing and smiling and cooing and talking away. Oh goodness, that was a memory for the record books. 

Abraham also loves it when we say, "you're doing it!" whenever we're holding him upright and he lifts his head up from the front-hanging position. We do our exercises and tummy time every day while listening to the Mozart station on Pandora. This boy is going to be smart and strong.

He has a full head of red hair and this always gets him lots of comments. It poofs naturally and I liken it unto the 'do of a 90's stock broker. He gets some serious toe and finger jam that you have to pry out his incredibly strong grip upon bath time. He does pretty well with his baths in the out tub, but certainly prefers Daddy to do the job. 

We don't leave the house much these days. He will not sleep in his car seat/on outings so we have a short, less than one hour, window to run our errands right when he wakes up. He is always ready for another nap after being up for only an hour. (or less!)

If he gets startled at all or sees something interesting, his eyes gets soo big. You can see the white above his pupil. It's the best. 

Okay, I have to talk about the receding chin. The chin!! Just look at it. He tucks his bottom lip in, and then the chin, and then the double chin?! The receding chin was even highly noticeable in his (and Jude's) ultrasound pictures. Jude has grown out of his. I can't handle it (obviously a little obsessed).

Picture for the month.
#1: The Occe. Must be within reach at all times. Mama's only relief.
#2: A pillow from Mommy and Daddy's bed. His favorite place to sleep/where he sleeps all night. His bed, as far as he's concerned.

Month two. Life is getting a lot more normal. More outings. More time awake. More smiles and laughs. Lots more kisses. We love this little guy greatly. He is the perfect final piece to our four corners and now we are complete.

Friday, April 18, 2014

Abraham's birth story // Part two

(Read part one here.)

They couldn't get an IV started because I was dehydrated but finally got one after a few nurses and a few more sticks. They had it saline locked and were able to take the baby monitor off after a few minutes and just check his heart rate periodically per my request/midwife's orders. There's only so much I can say here about the next thirty minutes of contractions. I felt beyond all misery. The midwife hadn't gotten our message due to some answering service issues so she got late notice about my arrival. Before she arrived I remember saying, "Can we get a doctor or midwife or someone around here!?" I was so relieved to see her pleasant, familiar face and long blonde hair.

That time between when we got there and when I started pushing was intense, to say the least. I just wanted to have my baby so incredibly badly. I felt like since it all happened so fast and my doula wasn't there (although the back-up doula was) we weren't able to use the different tools and coping mechanisms we had planned on. And Hypnobabies didn't even cross my mind at this point! (In Hypnobabies defense, I had not done my preparations like I was supposed to.) I had Dan rub me with a cold (dripping wet) wash cloth. I was all but screaming at him about where and how to do it. Luckily my mom found her way to us and was able to be there the whole time. She was on camcorder duty. I remember feeling desperate for anyone to give me some relief. I rationally knew what the situation was and that no one could "help me" any more than they were (or than I would let them) but in that moment I just felt helpless. I don't really remember thinking about pain medication or being tempted by the option of it even though I was in the hospital. Probably because I wanted a natural birth so desperately and had deemed pain medication all but toxic in my mind and I knew I was close.

Before I knew it I was pushing. She told me she could see his head and that gave me the motivation I needed. The ring of fire they talk about wasn't bad to me. I was just relieved I was getting close. I pushed for thirty minutes and he was born at exactly 10:30 am. (We checked into the hospital at 9:30 am!) 

I felt utter shock when he was born. It was over. I did it. He's here. I just birthed this baby. He looked so big. And beautiful. And perfect. And he just came out of my body. I couldn't believe it. I grabbed him immediately and put him on my chest. I held him up so I could see his face and his little head just hung down. I could barely cry or do anything but hold him on me because I was slightly pooped. We delayed cutting the cord, and Dan cut it when the time came. I didn't feel that "high" some people who have natural births describe, mostly just relief! I really wanted Dan to hold him right away. He had told me not long ago that he didn't hold Jude until about an hour after he was born! I had no idea at the time but didn't want that to happen again. I wanted him to hold him skin to skin so I told Dan to take his shirt off and hold the baby. He told me he didn't want to take his shirt off (room full of women I guess) but I ever-so-kindly ordered him to and he obliged. Once his shirt was off, I handed him the baby and enjoyed watching him hold him. I took the baby back after a minute and just held him and we started nursing. He was a great nurser right away.

After a while (I don't remember how long), and at my consent, they got his measurements. When the nurses called out, NINE POUNDS FIFTEEN OUNCES!!" (they were all so excited) I felt so proud of my big baby and kind of relieved like, "Oh, good. At least I have a reason to feel so crummy!"

At that point I was getting Pitocin full speed ahead because I was hemorrhaging at a point of concern. This is the part of the story that definitely did not go as planned. Without getting into too many unnecessary details, I was loosing a lot of blood. Since the baby was so big, it was hard on my body. According to my midwife, my uterus just kind of "gave up" after he was born and was having a hard time continuing to contract to stop the bleeding. I don't care to remember all that happened, but there were a lot of excruciating bi-manual exams and fundal massages, Pitocin, Cytotec, and even a threat to go to the OR. They had to restart my IV so in the midst of getting stitched up, I got stuck about eight times! I was screaming out in pain and remember yelling, "This is unethical!" 

They were able to get the bleeding under control and after a few hours we were transferred to the mother-baby room. In the midst of all that Abraham had an impressive BM and had Dan and the nurse cracking up. We Skyped with my Dad in the midst of it all and he was, of course, just enamored with the little guy. Turns out some of my lab work results fell through the cracks upon all our changing care providers and we didn't know I was anemic. My Hemoglobin was 6.0 and my EBL was 600 mL, so now I know why I felt so rough! :)

Not quite ready to smile yet...

I was hesitant to share all this because I don't want to sound like I'm complaining, but it's our story and it's real life. It wasn't particularly peaceful but I would not change a thing. I thought long and hard about how I wanted my baby to be born. It was incredibly important to me for him to be born on his own time and in his own way. And this was his way. With him being so "late," it was only a natural consequence that he was also going to be big. I chose not to think about that as it had no merit and would only scare me.  My baby came when he was ready and I am so grateful. Here's when the story gets good again... 

He was absolutely perfect (and still is). It was pretty hard on me, but I feel my reward was a literally perfect baby. He makes it all worth it and I'd do it again for him. His Apgar scores were perfect. He was incredibly alert from birth. He has never had the slightest difficult nursing. The lactation consultant who has been practicing for over twenty years commented on how unusually alert he was at just a few hours old. She said she can always tell the natural babies from the medicated ones because they nurse so much better and have a lot less difficulty overall. My doula also said he is the most alert/strongest baby she has ever seen. He has never had reflux. He has never been inconsolable. He is rarely fussy. He did not have jaundice. He has never had any issues in the slightest and I attribute that to him coming when he was ready. My birth was far from what I expected and it took me a few days and weeks to accept all that happened and wrap my head around it all. But I would not change one aspect or part of my story because it is his story too. He is a boy all his own and made quite an entrance into the world! He is incredible. He is calm and content and completely mine. I adore him every wit. More than I could ever express. He is incredibly special to me. He has taught me so many lessons about myself and life and love. He is a strong and mighty spirit and I am humbled and grateful to be his mother.

Giving birth to this breathtaking boy was a life-altering experience for me. I learned about myself and my strength. I learned about love and the things we do for it. I gained confidence in myself as a woman and a mother. I hold these feelings close to my heart and am grateful beyond words for everything he is to me.

No big deal. He's a model.