Archive | January 2016

For a Dear Friend

 We received the news today that a very dear family friend (Mr. A) of Mr Minion has passed away. Mr. A and his wife Mrs. E lived across the street from Mr Minion’s family when he was growing up, and they were like grandparents to him. I have heard so many stories about all the hours spent on their back porch just talking, about Mr. A showing Mr Minion how to make better Pine Wood Derby cars, how electrical circuits work. How Mrs E would poke fun at the “boys and their toys.” 

Mr Minion has lost a grandfather and good friend. If you are the praying sort, please say one for Mrs E, Mr Minion, and Mr A’s family and friends. 

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Just For Fun!

A couple days ago, something jogged my memory about something I did one day in the NICU while I was eating lunch in the parent lounge. We had been expecting Little Miss Minion to arrive in August, so I had looked up some fun trivia back when we first out to see what her zodiac sign would be, her birthstone, etc. I think it was June by the time I realized that I didn’t know what her birthstone was. I didn’t know what her zodiac sign was. I didn’t know any cool facts about her birth month. Being in the NICU and knowing pretty much nothing about her, other than she was already a warrior, I clung to this as a way, however trivial and stupid, to get to know her.

So if you have ever wanted to know some fun trivia facts about someone born on May 14, you will not leave this post disappointed. 🙂

Birth Date: May 14, 2015

Zodiac sign: Taurus (the bull). Taureans (apparently this is the real term) are strong-willed, persevering, and determined people. Check, check, and check. Often considered bull-headed and stubborn. Yep and yep, especially in the NICU when she kept pulling off her nasal cannula and yanking out her feeding tube. Reliable and hard-working, ruled by Venus, goddess of love and beauty. Patience is also a key feature (something she certainly didn’t get from me), as well as strength and determination.

Birthstone: Emerald. According to the American Gem Association, emeralds are symbols of rebirth, which kind of fits in a roundabout way. Little Miss Minion was born very early, and had to graduate from the NICU after a rebirth of sorts, since she had to learn the essential skills that most babies are born with. Emeralds are also considered to be a healing stone.

Birth flower: Lily of the Valley. Symbolizes a return to happiness, sweetness & happiness (LMM must be the happiest baby ever), and rarity. LMM definitely lives up to the rarity aspect, since nearly every doctor, nurse, and other medical professional we’ve encountered has been absolutely shocked at her lack of a ventilator at birth and comments on how rare that is for a 28 weeker.

Chinese zodiac: Sheep. Gentle, calm, and remiscent of beautiful things.

Hope you enjoyed!

8 months old

Sorry it’s been so long since the last post…time flies. 

Little Miss Minion turned 8 months old on the 14th! And she turned five months adjusted on the 6th! Some of her favorite things include smiling, laughing, screeching, grabbing things, and putting everything in the world into her mouth. She’s rolling from belly to back pretty consistently, although only over her right arm. Her PT thinks this might be a muscle imbalance from her last surgery, since she preferred her right side for so long due to the new shunt. We are working on getting her to equally use her right and left sides, which is something I feel like we’ve been doing in one form or another since she came home. First it was the left, now it’s the right. 

Mr Minion and I went on our first vacation in like a year and a half. It was also the longest we have been away from her since she was born. The previous record was about 16 hours. This was four days, and it was not nearly as hard as we thought it would be. We felt like terrible parents until we realized that we had gotten used to leaving her at the NICU. Plus, we knew she was in good hands (thanks to Mr Minion’s parents). We went to Universal Orlando to see Hogsmeade and Diagon Alley (Harry Potter) and it was amazing. We had seen Hogsmeade before, several years ago, so we focused on Diagon Alley. And they have hot Butterbeer now! I’ve been researching recipes since we got back. 

I was very anxious about traveling and pumping. Going there was not going to be a problem, since all I had was my pump, but coming back, I knew I would have several days of milk, about 100 ounces. What would I do with it while I was in Orlando? Would they let me on the plane with it? I did some research and printed out the TSA rules about breastmilk and pumps as medical devices (therefore not counting as one of your carry on bags) and highlighted the parts that applied. I put several copies in my pump bag, just in case. They sent the pump through the X-ray machine and cleared us without a second glance to leave home for Orlando. Coming back through, they pulled the cooler bag full of milk for a physical search, which I totally understand because it looks like a bag of liquid, which, as we all know, is VERBOTEN on airplanes. The guy put gloves on (which must be standard procedure), which the preemie mom in me appreciated because of germs. He opened it and picked a couple of the bags up to see what was in the cooler. 

Another mom (with a baby) was getting her formula and a couple bags of milk examined as well and said something like “good job, Mama! Liquid gold right there. I wish I could pump like that.” It made me feel really good to have a total stranger acknowledge that the effort and time and frustration of pumping is worth it. And it reminded me that, even though I would much rather LMM take it “from the source,” I’m still doing something that not all moms can do. Even though breastfeeding was incredibly difficult for her in the nicu (suck, swallow, breathe is so much easier with a bottle), and I pretty much gave up on it because she handled a bottle so much better, and even though that was my last possible “normal” childbirth experience that got thrown by the wayside, I am still doing something incredible for her. 

LMM got her monthly Synagis shot this week, and her newest weight is 14 pounds and 0.8 ounces. I’m totally counting that 0.8 ounces because that is 2% of her birth weight. She’s now 7 and 1/2 times her birth weight of one pound fourteen ounces, and she’s 24 inches tall, which is only 3 feet shorter than me. 🙂 And it’s so close to double her birth length of 13.5 inches. 

I’m going back to work at my physical office in a couple weeks, but they are going to let me keep working from home a couple days a week. I’m so unbelievably lucky that they have been willing to let me work from home since she came home in August. We hope to start her in daycare around May or June, but I’m positive that keeping her in isolation this winter has made a huge difference with her immune system. I asked her pediatrician about when Preemie lungs catch up to full function and immunity, and she said that it’s usually about a year for every month of prematurity. Since LMM was born three months early, she will probably catch up at around three years old. Since she was such a rockstar at birth, not needing a ventilator at 28 weeks gestation, I have high hopes for her lungs. Thank you, steroid shots and surfactant!

Other than that, there isn’t too much going on here. 

Goodbye, 2015!

This has been one heck of a year. Between being pregnant, becoming high risk for that pregnancy, the sudden death of a co-worker, the abrupt birth of Little Miss Minion at 28 weeks, spending 84 days in the NICU, changing job positions, becoming an expert on all things Preemie, watching my daughter go through a life-threatening infection and 4 subsequent brain surgeries, and adjusting to life with a preemie at home…I think we’ve had enough excitement to last a long time.

I’m a much different person tonight than I was last New Year’s Eve.

I took some things for granted this year. That I would have a 9 month pregnancy. That I probably wouldn’t die in the process of giving birth. That my baby would get to come with me when I left the hospital. That I would be able to show her off to family and friends, and not be terrified to take her out of the house for fear of getting her sick. That she would stay healthy once she was born. That she would always remember to breathe, and know how to eat. That she would weigh more than 7 sticks of butter.

I learned a lot this year too. NICU nurses are some of the toughest and most caring people in the world. They laugh over the few things you CAN laugh about in the NICU. They cry when they come back after a long weekend to find your baby on a ventilator after having emergency brain surgery. They teach you how to hold your baby, how to touch your baby. How to change diapers amid wires and tubes and IVs and PICC lines.

I’m much tougher than I thought I was too. Changing your first ever diaper on a baby who weighs a little over a pound, with an IV, heart monitors, breathing monitors, pulse oxygen monitors…its a challenge. But I did it, and Mr Minion did it. I walked out of the hospital twice a day for 84 days with no baby in my arms. I learned to smile and nod when people told me about how terribly their birth plans unfolded, how they had to wait two minutes to hold their babies, how they had caved and gotten the epidural after 10 hours of labor, how their “tiny” baby seemed so small at 7 pounds and I shouldn’t worry about LMM.

Some things I learned this year:

Don’t take relationships for granted.

Don’t underestimate the difference three weeks can make. At 25 weeks, LMM was estimated to weigh about a pound and was about 10 inches long. Not ready for life outside me. At 28 weeks, she didn’t even need a ventilator.

More people than you would think have experienced the NICU, but most people have never seen a preemie. Most people have no concept of a baby that small, with purple skin, with barely unfused eyes, with more wires and tubes coming off of them than you can count. They will say things to try to make you feel better, but it doesn’t usually work. Sometimes they will try to act like everything is normal, like your baby is just staying in a baby hotel for a while while it grows. They don’t understand (or they don’t WANT to understand) how unbelievably fragile a baby born too soon really is. Paper thin skin. Any touch is interpreted by their immature brains as pain. They can only be held once a day because the stress of moving them around is too much.

NICU/Preemie PTSD is real.

If you think the average new parent is germophobic, you’ve clearly never met a Preemie Parent.

9 mls seems like a TON of milk and you don’t know how its all going to fit in your Preemie’s tiny stomach. In case you didn’t know, 9mls is a little less than 2 teaspoons.

There is a different alphabet in the NICU. We learned about As and Bs (apnea and bradycardia, breathing pauses and low heart rate), Ds (desaturations), TPN (this is custom-made nutrition liquid for each baby based on their weight, their blood work, and how much milk they get), BP (blood pressure), BM (bowel movement), IV, IVH (intraventricular hemorrhage, or brain bleeding, something that is not uncommon in babies born around LMM’s gestational age), MRI, NEC (necrotizing enterocolitis, a very, very bad intestinal infection that kills 25% of babies who get it), and CPAP (continuous positive airway pressure, a method of breathing assistance in between the ventilator and the nasal cannula).

Take all the typical baby advice and throw it away. Preemies have their own rule book that mostly consists of pictures of them laughing at you.

Your NICU bill will likely be over a million dollars. Seriously.

You will be in RSV isolation for most of your first year, depending on when you have your Preemie and how many weeks gestation it was at birth. No shopping trips, no parties, no running into the store for just one thing.

 

Having said all that, I won’t say that I wouldn’t have it any other way. I would give anything to be able to have given LMM even another week of being an “inside baby.” To have kept her from getting GBS, meningitis, sepsis, and hydrocephalus. To have been able to take her home when I left the hospital, and have her be healthy enough to do that. This is not what any of us had planned, but we are trying to get used to it. The future isn’t written in pen, after all.

 

And now, as a thank you for your loyal reading of my ramblings, here are some funny cartoons. HAPPY NEW YEAR!!!

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