NICU Life is Hard
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 and Preemies
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.
Pumping for a Preemie is Hard...
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!
Personal post - welcoming baby #3 Frankie! He is a preemie and joined us this week... at just 27 weeks, 5 days gestational age.
Here is our birth story - I will spare most of the juicy details but since so many people have been asking what happened I thought I would distill our story and share some blessings.
Monday, June 3rd, 2019
8am @work - little bit of blood and mucus - call the midwife
9am still @work - more blood - update doctor
10:30am More blood - amazing colleague drives me to labor and delivery in Boise at the direction of my midwife.
11am Assessed by medical staff and given IV Fluids, Magnesium Sulfate and Steroid shots. Told not to eat or drink :( mild contractions approximately every 10 minutes.
12pm and later - Lots more blood loss, Frankie looks good on the ultrasound (measuring 29 weeks and 2 pounds, 13oz), monitoring labs for changes because of blood loss, Catheter overnight (worst feeling ever) because not allowed to move around because of blood loss. Tested for autoimmune diseases, different clotting issues, etc. Why is this happening?
Tuesday, June 4th, 2019
Catheter removed. 9am labs look good. Allowed to eat and drink again :)
Very optimistic doctor shares that I could potentially go home in a week as long as I stop bleeding and Frankie monitors okay. Some blood loss but not like the night before. Hot and foggy from Magnesium but mostly okay day. Getting settled in for the long haul - every day in the womb is three less days in the NICU they tell me.
Wednesday, June 5th, 2019
Not as much blood loss but still losing. Labs came back significantly lower. Ultrasound shows that my waters had ruptured at some point in time and Frankie was running out of room. Started antibiotics (like lots of antibiotics). Stopped Magnesium only to be started again later.
As the evening went on - I expressed my concerns for my own health and that I really didn't want to see my "room crashed" because of Frankie doing poorly. As my blood work continued to decline the medical team made the decision to deliver Frankie via Cesarean section. At 9:57 on June 5th Frankie made his entry into the world with some welcome screams (they told me to not expect to hear crying since he was so little). He was 2 pounds 9 ounces and 15.5 inches of perfect.
I should actually probably say, almost perfect. When they were taking him out they had to cut some membranes that were around his ankle. They said a few more hours with that tight band on his ankle and we would have been looking at amputation of that foot. If he would have gone to term with that band his foot would have likely been reabsorbed into the amniotic abyss. They told me he would have a permanent anklet but it is already practically undetectable.
A couple of things that I would like to mention about my stay at the hospital - I made sure it was known that the priority was always me. I have two other kids I need to be around for, and while the situation was sucky I wanted to make sure I would be priority. I discussed this with many of the nurses and it seems that in the US the focus is often on saving the baby. This a cultural perception that I think needs to change.
Another mention about my stay is after Frankie was born I really made sure the nursing staff helped me stay on top of my Tylenol and Ibuprofen rotation so that I would not have to take anything harder to manage the pain. So far so good.
Frankie is breathing on his own with the assistance of a CPAP. My milk is starting to come in (with lots of effort but it is) so he is getting great nutrition. I get to go home tomorrow - Sunday but he will be here until his due date, August 28, 2019.
Special shout outs to Shanae for coming to stay with me and my Mom for flying up in a pinch! Thanks to everyone that has visited me and the nursing staff! The support feels good!
If you would like to help support the long journey ahead for my family please support this podcast via Patreon or PayPal. Add encouraging comments or stories here too!
Blood Sugar Monitoring
What is normal when it comes to blood sugar? I learned a great deal about "normal" blood work values when I took a course from Chris Kresser years ago. Basically, "normal" values in bloodwork are taken from a big group of not necessary healthy people but people who have to have blood work done. Averages are taken and "normal" is established from a bunch of sick people. Another Doctor friend of mine says there are A ranges, B ranges, and C ranges that all fall into the "normal" category.
I have been monitoring my blood glucose levels after my Blood Glucose Screening test (done during the Third Trimester to monitor for Gestational Diabetes) was a little high (138) but still in normal range. I would also like to point out that Blood Glucose Screening Tests and Glucose Tolerance Tests are a little ridiculous because no normal human is ever going to go consume 50-100g of straight glucose.
Dr. Kresser also points out that he does not care for these types of tests because they are not realistic. Read his articles on "normal" blood sugar here: https://chriskresser.com/when-your-normal-blood-sugar-isnt-normal-part-1/ and https://kresserinstitute.com/normal-blood-sugar-isnt-normal-part-2/
I went in search of more information after monitoring my fasting blood glucose and pre- and post- prandial glucose (before and after meals) all week and finding I run under 100mg/dL all the time. I was thinking that something was wrong because it was always "so low." This is actually healthy!!!
I did two of my own Glucose Challenge Tests this weekend at home. Here is what I did and my blood glucose values:
This was meant to mimic a Oral Glucose Tolerance Test (OGTT) but utilize real food. Granted I would never rapid fire eat 4 full size muffins or drink 36oz orange juice in 5 minutes but those are the foods I have around (I actually had to buy orange juice for the test). The Day 2 values that have two readings was me making sure my monitor was getting good readings; there is acceptable standard deviations based on the equipment you choose. I also tried pricking different fingers to see if I would get significantly different readings. During both tests I only drank water.
I used an over-the-counter TrueMetrix Glucose tester that cost about $40 with test strips, lancets, and alcohol wipes. It does not have the best reviews but was recommended by the Pharmacist.
One of the biggest things that has been confirmed with my monitoring of my Blood Glucose is that when I am feeling nauseous it is because my blood sugar is low.
I have also been logging all my food with calorie and sugar values. I am pretty consistently getting 2100-2300 calories and right around 75g of sugar per day; besides the two days I did the Glucose Challenge Test at home.
Another Post and Podcast coming soon about Blood Glucose Monitoring 101. What do you want to know more about?
Science, Solutions, and Sprinkles (SSSprinkles.com) is the personal branding site for Sara Jane Weidner (now Bellocchi). 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.