Audible Book Review of "A Grown Up Guide to Dinosaurs" by Ben Garrod. It was well worth the listen. Here is my short summary and highlights of the audio program.
Warning - It will make you want to watch all the Jurassic Park movies again!
The blog post I didn't want to have to write; I was hoping Frankie would not get ROP (Retinopathy of Prematurity). I knew he was at risk because of his gestational age, low birth weight, use of oxygen, and anemia but I hoped we could skip it. Just like I am hoping he doesn't require a blood transfusion like many extreme preemies do.
His first eye exam at 31 weeks showed no signs. The paper the eye doctor left behind read "Your baby does not have ROP, but could develop problems later because the retinal blood vessels are still not fully mature. Your baby should have a ROP exam in 2 weeks." Alright, no big deal.
His second eye exam at 33 weeks showed stage 1 ROP (explanation of stages to follow), not requiring treatment, just follow-up in two weeks. This time I was here for the exam but they asked me to leave the unit. I went to fill up my water and it was done before I got back. The paper the eye doctor left behind read "Your baby has ROP. The ROP is not enough to require treatment. It is important to understand that ROP can change suddenly, placing your baby in danger. Your baby needs an ROP exam in 2 weeks." I could not believe that the eye doctor would not have stopped to talk to me. She just marked the box on the sheet. I asked for a second opinion and spoke to Frankie's neonatologists; as usual I did my research too.
Frankie just had another eye exam and the box was checked "Your infant's eyes have mature blood vessels and are at low risk for developing ROP. Other diseases, such as crossed eyes, lazy eye, and extreme nearsightedness, occur more frequently in premature infants and may only become apparent when the infants are older. Follow-up care for your infant will be on an as needed basis." And she wrote in "in six months."
While Frankie is in the clear now for ROP here is what I know about it:
Stages (how abnormal the blood vessels are) and whether or not treatment is required:
Great other resources to learn more:
Quick podcast on when to test your blood sugar, what abnormal may look like, why I test, and a little on the different types of diabetes.
DISCLAIMER: This podcast is not intended to diagnose, treat, or mitigate any disease. Please consult a healthcare practitioner prior to making any changes to your dietary or supplement program.
Here are the quick key points:
Frankie is one month old today. He will be in the NICU for at least another month if not two. Thirty days of pumping, being driven back and forth to the hospital, and in general not really feeling like it is all real. Talking to case workers, counselors, as well as friends and family and it appears we are coping very well.
People at the beginning of this journey asked me if there was any way they could help to let them know. I didn't have a response then. I didn't know what help we would need. I knew we didn't need anything like a GoFundMe but now I am realizing a little financial boost would help take off some of the stress. We are not asking for handouts... we want you to get something in return for supporting us. So how can you help? Buy some protein (we have it in stock at athlonnutrition.com). Purchase a planner (also in stock at timemanaged.com). Don't need supplements or a planner? Get the exclusive "Say Hello to my Little Friend" tote bag at dudewranch.com.
Future posts will be about Science... Frankie is just kind of LIFE right now :)
Happy Fourth of July! When I was a kid this day meant block parties and fireworks; it also meant going down to the Pismo Pier where my Grandpa, Uncle and Aunt would help put on the big show. Nothing beat feeling the pier rattle and rumble while watching the fireworks light of the sky; knowing my family had something to do with it.
When I moved to Idaho the Fourth took on a different meaning... traffic. Haha. It meant everyone was headed North and it would take extra time to get home any day near the Fourth. It also means volunteering at and sometimes Chairing the Gem State Kiwanis Pancake Feed.
Today it is just another day with a trip to the NICU to visit Frankie (day 29) and an afternoon taking the kiddos to the river to cool off. I look forward to when Frankie is well enough to come home and life can start to feel normal again.
What does the Fourth of July mean to you?5
Warning - This post is real and raw.
NICU life is hard. I was researching resources for NICU families and actually read that NICU Mom's can get PTSD from their experiences at the hospital. I thought reading about other's experiences would help to put mine in perspective; but it doesn't/hasn't. My situation is my situation and comparing it to other situations doesn't change a thing. This is a similar line of thought as to why I have mostly quit social media.
Currently, I get to see Frankie a few hours per day. I pump every 3-4 hours to keep milk going for him; I actually pump, pause, change bottles, and pump some more so the hospital can feed him the more nutritious hind milk. I work as I can and spend quality time with Thean, Livia, Max, and my Mom.
The positive: Frankie is doing as well as can be expected. He broke 3 pounds today weighing in at 1370 grams.
The raw - I feel out of sorts myself. My work is graciously allowing me to work from home but I have to be driven by Thean or my Mom every day to the hospital. I have a doctor appointment tomorrow where I hopefully will be cleared to drive. My next recovery milestone will be being able to pick up my toddlers and swim!
More raw - I am exhausted... yet I feel like I need to do more. It still doesn't feel real. Did I really need to pop out an extreme preemie to show how strong I am?
The real - Is it weird that through all this the consistent questions I have are: How do I provide more value so I can make more money to better support my family? How do I help my businesses thrive so I don't have to worry about the financial side of this mess? Comments below appreciated.
I am doing my best to be present every moment with Livia, Max, and Frankie. 18 days into this NICU journey and I may already be losing my mind. But who wouldn't lose their mind given our situation. The truth is we don't even know when we will get to bring Frankie home and that is hard to digest in itself.
Here are some articles I read while looking up NICU resources and am still deciding if they are helpful or not:
Bonus - Here is my favorite most recent picture of Frankie:
WARNING - If you are offended by swearing DO NOT READ THIS POST OR LISTEN TO THIS PODCAST EPISODE.
Some of my favorite quotes from the book:
"If there is no reason to do anything; there is not reason to not do anything."
"Emotions are simply biological signals that are designed to nudge you in the direction of beneficial change."
"What pain do you want in your life? What do you want to struggle for?"
"You're wrong about everything - but so am I. You don't move from wrong to right but wrong to less wrong. Shoot for constant improvement."
To not give a fuck is to stare down life's most terrifying and difficult challenges and still take action." - Mark Manson
Life happens whether you are ready for it or not. I have made it a point in my life to try to learn something new everyday. Sometimes this means tackling hard concepts and sometimes this means getting a basic understanding of how something works. My son being in the NICU is one great big learning opportunity and I hope to share my experience and the things I learn along the way in my blog.
In my podcast I take books I've read or things I've learned and break them down into understandable concepts shared over about 10 minutes. In my blog I put supporting information and post the link to the podcast.
You don't have to have trauma in your life in order to learn something new everyday. You just have to be on the lookout for opportunities to learn and grow. Look at the little things in your life you may not have appreciated before and strive to understand how they work. If you can't figure out with research or scientific method how it works, then appreciate it as the miracle it is. Or ask me to make it a future podcast!
What are you going to learn today? Subscribe to my podcast if you want to #learnsomethingneweveryday and believe #lifeisbetterwithsprinkles
Caffeine is commonly used to treat idiopathic (no known source) apnea in preterm infants (like Frankie, especially neonates born before 30 weeks). Thean (Frankie's daddy) did not like to hear that he was recieving caffeine because he remembers my soap box on how too much caffeine is bad for the adrenal glands; so here he is thinking we may be doing damage to Frankie before he is even out of his artificial womb. I tried to come at Thean with the idea of costs versus benefits but then decided I needed to do some more research to learn about caffeine and preemies to see if there might be an alternative or at least no lasting effects from its use.
The subject is well researched and the research I found is encouraging. Here is some of what I found out:
I could go on and on with all the great research but I think you get the point. I feel pretty good about Frankie being on Caffeine Citrate after I did the research to figure out why he would be on it; without just taking his doctors/nurses word for it.
Getting my milk to come in after a Cesearean at 27 weeks 5 days was no easy feat.
I pumped every three hours for three days with nothing but sticky droplets of colostrum that my Mom helped me chase with a special syringe. Getting just a cc or less to be swabbed in Frankie's mouth. My milk has come in and I am consistently pumping more than he will eat in a day in each sitting. He eats about 4ml and I pump close to 40ml.
Pumping at home while my newborn is at the hospital consists of waking up at all hours... massaging my boobs... and staring at pictures, videos, and live feed of Frankie while pumping trying to get my milk to come down.
Pumping at Frankie's bedside with just a curtain between me and the nurse's station may seem awkward at best. However, seeing him in person and holding him helps the milk come. My body knows he is near and needs sustenance.
Good milk comes from persistence, lots of water, lactation tea (Mother's Milk), and good calories (like in the Madre cookies).
Frankie weighed 1150 grams at birth... today he is 1040 grams... the lowest he got was 980 grams. Nutrition matters!
Science, Solutions, and Sprinkles (SSSprinkles.com) is the personal branding site for Sara Jane Weidner. It is the confluence of all her businesses, thoughts, knowledge, and a way to give back... through distilling information into an interesting and entertaining content pillar.