Moses 9/15/01-2/21/02

I gave birth to Moses when I was 19 years old, in the back seat of a Chevy Lumina (Sorry Paula!). We made it to the hospital but I couldn’t quite get out of the car, so the Doctor, Dr. Henderson, came out to me and we had a baby there. (Side note, Dr. Henderson also delivered me, and when Moses passed, he spoke at the funeral-he’s a great guy). Moses was 4lbs 3ozs at birth and was full term. It was unclear as to why he was so small, we thought maybe the placenta had stopped feeding him and decided he was just a small baby. He was on oxygen in an incubator for a few hours since he was born outside, and was small but it wasn’t long that he was in the room with me. We went home the next day and had fun dressing up the tiny baby in doll clothes.

When Moses went in for his 6-week checkup, the Doctor was alarmed, he’d only gained a few ounces since birth, most babies gain about an ounce a day. We were referred to a pediatric specialist in Amarillo, about 2.5 hrs away from where we lived. When we got in to see the specialist, he took one look at Moses and knew something was wrong. You see, Moses’ tummy was distended. I thought that big round belly was him gaining weight, it definitely was not. When people are malnourished, you will often notice a round, distended belly. I know that now, I did not know that then. He admitted Moses to a nearby hospital and we spent the next several weeks there. There were so many tests run, a feeding tube was placed – just trying to get him to gain weight. They could not figure out what was going on. One day, an intern with a thick accent came in and he had a big book in his hand. He looked at Moses a while, then showed me a photo in the book and asked me if I thought it looked like Moses? It looked just like him! The only thing I picked up from the rest of what he was saying was the word “Leprechaunism” and I remember thinking to myself that was the strangest word. I used the computer in the Ronald McDonald room in the hospital to email our family friend, Rita, and asked her to please research the condition for me. A few hours later, my parents showed up and they had paperwork in their hands. Rita had read about the condition and it was terminal. Instead of getting back to me, she told my parents who came up right away. I read the material and later that day a Doctor came in and told me they were pretty sure that that is what he had, and that he was terminal. The condition is extremely rare and at that time there had been less than 50 cases ever documented. I asked if we could go home and he said yes, they would get us stabilized and set up with home health items we would need for home and we could go home.

About Leprechaunism – The short story is these babies do not have insulin receptors and are not able to use the food they consume. They all have elfin-like features, hence the name, and all look very much alike! They have very large hands and are very hairy. They also have enlarged genitalia and have acanthosis nigricans from the blood sugar issues. They do not live past the age of 2.  You can see the website that Rita shared with my parents here if you’d like to learn more about the condition and also see what information we were presented with.

http://jamanetwork.com/journals/jamapediatrics/fullarticle/190006?resultClick=1

We moved in with my parents. Taking care of Moses was literally a 24/7 job. My dad did not sleep at night so he took the night shift and I took care of Moses during the day, Moses’ father worked because the bills still had to be paid. Moses was put on hospice care and we had nurses come to see him a couple of times a week to check on him. We just concentrated on loving him and keeping him comfortable.  He had a NG tube (nasogastric) which after going to the ER a few times to have it put in, Dr. Henderson showed me how to put it in myself to save us a trip. Any time Moses got super upset, he’d reach up and pull that tube out…little stinker. He was fed continuously to try to keep his blood sugar stable and we added Canola oil to his formula to help give him extra calories. He was on quite a few meds, some for pain, some to help with his stomach since he had the NG tube. He was also on a nebulizer to keep his lungs clear since any sickness could be fatal to him. Even though that was the case, I still took him out with me to the store etc. I felt like his life was short, and he should at least get to live it some…and honestly, I needed some normalcy for myself also. Moses absolutely loved his nebulizer, the sound was calming to him, at one point we ended using an ice cream maker for the noise also so we wouldn’t wear out the nebulizer. He also loved an Elmo toy that his father had bought him. He would sing and coo along with it and we played it constantly for him.

We made an appointment with a specialist in Amarillo to see about getting a MIC-KEY* button put in. This would mean the tube would go straight in a port in his stomach and I wouldn’t have to put it down his nose anymore and he wouldn’t be able to pull it out. The day of his appointment, he seemed to have a cold, but I didn’t want to cancel the appointment because we had been waiting a while to get in and also, I was ready to have the button. When the surgeon came in to look at Moses he said, “This baby is dying”, I told him, “well yes, we know this but we still want to see about getting a button” and he told me, “no, he’s dying right now”. I was shocked. He looked him over and said he was in distress and I told him we had DNR orders and he told me he was calling an ambulance because he was not going to have him die in his office. This was such a shock, I had no clue that would be the last day I had with my baby. We took the ambulance ride across the street to the hospital and his geneticist and other doctors came. He was in congestive heart failure and it was the beginning of the end. They stabilized him, put him on oxygen and gave him morphine so he could rest. His nurse Apryl (we knew so many of the staff by this time) discharged us and when we got to the car she told me not to put him in his car seat, she told me to hold him all the way home and spend time with him. I will forever be grateful to her for that. We sped the 2.5 hours home. I was with my mom, his father and my dad were at home and we knew if they were going to see him alive we needed to get there quickly. We stopped at a police station and told them what was going on and gave them copies of the DNR, they told us they would call ahead but they we could still get stopped for speeding…we never did. We pulled up to the house and family was waiting outside, I handed him to his father and he opened his eyes, closed them, and was gone.

We had an autopsy performed so we could learn more about what was going on with him, and also sent tissue and organ samples to a group in Utah that was doing a study on Leprechaunism, unfortunately, that study ran out of funding and I’m not sure it was ever completed.

He lived a short 5 months and 6 days, but taught me SO much and really is a big part of who I am today, If you ever want to learn more about him, ask! I love talking about him.

 

Posted in bereavement

Harrison Flynt’s Birth Story

None of this got to be used ;)

None of this got to be used 😉

Let me start off by saying that you can plan your birth down to the tiniest details and when it comes down to it, you get the birth you were meant to have; not the one you planned. I spent months planning Harrison’s birth. We touched up the paint in the extra bedroom; I decorated it with gifts from friends, birth affirmation cards that my doula gave me, and other pretty things that made me happy. I borrowed a birth pool from a friend and had it aired up, waiting for the day. I even had a swim suit ready for my midwife as a joke (she basically swam with me at my last birth). My husband and I decided to buy a GoPro for the birth. He and my midwife would wear it during labor and then we would drop it in the pool during birth. See? All. Planned. Out.

Monday the 28th of March 2016

Mando was out in the garage and I walked out to talk to him for a few minutes. We were talking and suddenly I felt a warm, wet gush. Not a big gush– I honestly thought I had peed my pants. I’m pretty sure I turned red and told Mando I needed to clean up because I’d wet myself. I text a couple of friends how embarrassed I was. One was convinced it was my water breaking but I told her it wasn’t. I came in and took a quick shower and dressed again. I went on about my business but a little later I had another gush. I didn’t feel like I was peeing but also it wasn’t a huge gush, but now I was second guessing things. I started writing a text to my midwife and then decided to not send it and see what happened. After changing underwear another time, I sent that text. She asked me to meet her at the birth center so we could use a test strip and confirm with microscopic evaluation so I did.

I arrived at the birth center around 9:45 pm. The test strip tested positive immediately and it was confirmed with the microscope. Shea sent me home and told me to keep her updated and that contractions should start within 24 hours. I called my friends and family and updated and went home. I told Tori, my doula, to wait to come until things picked up. When I got home I had a small contraction and bloody show, I decided things might go quick and decided to go ahead and ask Tori to come. It was 12:15am when she got here. We hung out, talked, and I had several contractions. They were about 7 minutes apart, but not bad at all. I decided to go to bed a little after 2am. I did wake up with contractions but they weren’t anything bad I really thought it’d be a while.

At 3:50am I felt like I needed to go to the bathroom and I did. That changed everything. Suddenly, my contractions were intense and close together– some less than 2 minutes apart, many around 2 minutes. I became vocal with contractions and my husband heard me and woke up. We woke Tori, who was napping on my couch, and I told her things were picking up. Noah heard us all and woke up. Everyone started getting things ready. Noah began filling the pool, Tori called the birth photographer and began making my bed etc. Between contractions, I was fine and helped get things ready. During contractions, Tori helped me get through them.

During all of this, at 4:00am, after about 3 of those close contractions, I texted my midwife a screenshot of my contraction timer and she asked me the intensity. I replied with a “7”. She told me if I have a few more and it stays at that intensity to let her know. I did. They did. I told her to come. She was on her way and lives less than 15 minutes away. I had a couple of more contractions and realized (along with my doula) that my body was bearing down during them. I told my husband to forget the pool, the baby was coming! I let them know they needed to get the Depends that I was wearing (to catch the fluid) off of me, and to get a chux pad under me. They did. I then got on my knees and leaned into my bed. I was still timing every contraction up until about 5 minutes before he arrived. It kept me busy, but mostly, I would watch the seconds, knowing the contraction was almost over and that I would have relief for a couple of minutes.

I had a contraction and pushed and told my husband to look and see if he saw anything. He said no. I asked him to bring me a mirror because it was happening. He put a mirror under me and asked if I saw anything. I told him no. I was taking a break. I asked the doula to call and see where the midwife was. I dialed the midwife, gave her the phone, and she stepped out. Then came the next contraction. I HAD to push. I pushed and out came Harrison head first, following was the water that his head had been holding in, and then his body all in one swift push.

It’s a boy! Harrison arrived at 4:43am with just his mama and his daddy welcoming him. The doula walked back in and said Shea was around the corner! We had done it! There was joy and excitement. My midwife walked in minutes later and was all smiles. She helped me deliver the placenta and assessed my bleeding. All was well! We took care of cleaning up and checking baby and getting me cleaned up. Harrison had an APGAR of 10 and weighed 7lbs, 2ozs and was 20” long.

IMG_1094

We DID think to start the GoPro before he was born. Daddy was holding it when Harrison was born and dropped it to help me so the actual birth is not recorded but the moments before and the sweet moments afterwards (and excitement!) are all captured on video. ❤️

And there it is. Birth. Life. A complicated process, that is as beautiful as it is spontaneous. And just another reminder that even the most thorough plans don’t always come to fruition, despite our desire or intention. Was I a little sad that I didn’t get to have my fantasy birth story? Absolutely. Was I a little scared that I had to do it alone? No. I had Mando, and my doula, Shea was on the way, but most importantly- I had an introduction that I knew needed to be made. I was going to meet my roommate of the last 10 months! So, instead of a fantasy, I was rewarded with the reality of my son, and in the process I was given the gift of a swift labor, a two push delivery, and a story that I will never forget.

Thanks to Dallas Arthur Photography for coming and capturing the moments right after birth. And to Tori for capturing the moments after she stepped back in the room with my iPhone. Here are a few photos from our big day.

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Breast Assured- yes, you can still eat while breastfeeding your dairy sensitive baby.

Breast Assured-Yes, you CAN still eat while breastfeeding a dairy sensitive baby!

almond milk dairy alternative

almond milk dairy alternative

There are many questions that come with breastfeeding a dairy sensitive baby. One of the most frequently questions I hear from mothers needing to cut dairy out of their diet is “What CAN I eat?”.   Many mothers think that they will have to live off bland chicken breasts with a few vegetables and fear that they will never be able to do it.  I get it; I really do.  When my littlest guy was around a month old, I figured out that I needed to cut out dairy; it was too hard on his tummy.  I freaked out. No cheese? No butter? I just knew I was going to die of starvation.  Little did I know, after a little time researching and trying out substitutions, I would be eating amazing food and even eating chocolate cake. Yes, CHOCOLATE CAKE! I know, I’m your friend now, right?!  

I started my dairy free journey by, of course, making regular recipes that I knew didn’t require dairy. Next, I sought out dairy free recipes and then finally dove into trying out substitutions. Substitutions is basically making “regular” recipes but instead of using the dairy listed, substituting it with an alternative that is dairy free.  I created a Pinterest board with some of my favorites. Note: Some of the recipes on the board aren’t dairy free unless you swap some ingredients and I tried to make note that in the comments on the pin.  

Along my journey, I also learned that there are a LOT of sources of sneaky, hidden dairy. UGH.  Some babies aren’t as sensitive as others. For my guy, I had to cut out ALL dairy. It was very important that I knew what hidden dairy was and how to avoid it.  I found many website that lists the alternative terms used for dairy and would scroll through them while out grocery shopping. Lucky for you, I decided to make a handy dandy version that is easy to read. Bonus! You’re also able to print it (high resolution file, baby!) or save it to your mobile device so that you always have it with you. Grab that printable below!  

—Substitutions—

Now that you’ve had time to scroll through my Pinterest Board, let’s talk about some of my favorite substitutions.

  • Cheese– I used Daiya cheese and Veggie Shreds. Be careful when buying Veggie Shreds;  double check that you get the one labeled Dairy Free. There is one variety that has hidden dairy in it (casein). I’ve recently learned of another “cheese” made by Follow Your Heart that is supposed to be a game changer, but I have not tried it yet. I haven’t looked for it in local stores yet, but I will update when I stumble upon it.
  • ButterEarth Balance dairy free. I substituted this for butter in a ton of recipes and it never failed me.
  • Milk– For the most part, we chose to use Almond milk for our “milk”. I even substituted the plain, unsweetened in recipes and it did well.
  • Ice CreamSO Delicious Ice cream. They make several different kinds including soy milk, almond milk and coconut milk varieties. One of my favorites was the Soy Milk Chocolate Velvet. YUM-O. That stuff saved me and my sanity, I swear.

Almost any item you can think of can be found in a vegan version. It may take a little looking, not to mention shopping around, but it’s worth it to be able to eat somewhat normal. Publix, Whole Foods and Native Sun are just a few of the local stores I shopped at for these items. You may have to ask a store associate where their vegan or dairy free items are; they aren’t always where you would expect. Also, if you’re looking for some awesome lactation cookies check out my friend Katie at Smart Cookies, she can whip up some of THE BEST dairy-free lactation cookies! 

I do have good news! Most babies outgrow their dairy sensitivity between 6 months to a year. We were able to reintroduce dairy around 9 months and had NO problems at that time! 

Be sure to comment below if you and let me know some of your favorite substitutions. Have you had to go dairy free for your little one? What was the hardest part for you and do you have any tips for readers who are just starting their dairy free journey?

Click the preview image below to enlarge. May be saved to your smart phone so you will always have it with you or printed to whatever size works best for you. Scaled down to 45% works great for a pocket sized list.  🙂 

Click to Enlarge

Dairy & Hidden Dairy List

Dairy & Hidden Dairy List

 

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