Archive | December 2015

Bananas

Mr Minion hates bananas. We gave some to Little Miss Minion starting yesterday, and she loves them. 

She’s starting to try to feed herself with the spoon, which is comical because she grabs the part of the spoon with the food on it. But she’s trying. Her physical therapist suggested trying new spoons once she’s better at grabbing. These spoons allow babies to feed themselves without having to flex their wrists. 

She’s also starting grabbing toys on her high chair table. She’s reaching and grabbing with purpose, which is really good developmentally. She’s rolled several times this week, which is always appreciated. 

On the agenda for tonight: a bath with enough water to splash! 

Advertisements

Constant Vigilance!

original

 

For those of you who might not be familiar with the above clip, this is Professor Alastor Moody from the Harry Potter books. Well, technically, its Barty Crouch Jr, but that’s another story entirely. Moody is an Auror, a Dark Wizard catcher in the Wizarding World. His job is to find and capture wizards loyal to the evil Lord Voldemort. His secret for accomplishing this (and staying alive in the meantime) is CONSTANT VIGILANCE! Life with a hydro preemie requires CONSTANT VIGILANCE as well.

Little Miss Minion has several things keeping her hydrocephalus at bay right now. She has two shunts that mechanically drain excess cerebrospinal fluid (brain Gatorade) to prevent her pressure from building. She has a manually created passage between her ventricles to let the fluid flow and drain between them, and she has an ETV (endoscopic third ventriculostomy) that functions as a drain. Ideally, the ETV would allow all the excess fluid to drain out and the shunts would act as backup methods…but what is ideal and what is reality are two different things. At any given time, her ETV could close or become blocked. Her shunts could malfunction, break, or become blocked. CONSTANT VIGILANCE!

Saturday night, we noticed a little bump near her ETV site. It had been there since she had the surgery, but it was puffed up a little now. She was acting normally, eating normally, showing none of the usual signs of increased cranial pressure. However, the possibility is always there. CONSTANT VIGILANCE! We put in a call to the pediatrician after hours line, just in case. They contacted the hydrocephalus clinic on-call ER doctor, who ended up telling us that this is part of the healing process and if she’s acting normally, there is nothing to worry about right now. CONSTANT VIGILANCE!

Between the initial call to the pediatrician after hours line and the neurosurgeon calling us back, we were already planning for another hospital admission, just in case. Would we take her in that night and risk another 12 hours of cold/flu/RSV exposure? Who would need to take off how many hours from work, debating between ourselves if this was a shunt issue or her ETV, whether her fontanel felt puffy, her last ten feedings and how they had gone, whether she had been fussier than usual over the past few days, did we still have multiple copies of her isolation letter or did we need more, how many bottles of breastmilk were already made up and would any get thrown away due to age…CONSTANT VIGILANCE!

I was watching Frasier this afternoon and it was the episode where Niles has to have heart surgery and Daphne flips out in the waiting room.

Roz: Daphne, it’s okay. Just calm down. You know when this is all over we’re…
Daphne: There IS no “when this is over”! There’s no tomorrow, no next week, no next year! There’s nothing until he comes out of there and I know he’s okay!

Sometimes Most of the time, this is how we feel. There is nothing else in the world until we know that she is OK. But we don’t ever really KNOW. We will always be worried about the status of her shunts.We will always wonder if they are working correctly, if her fussiness is due to being tired, teething, or a shunt malfunction. If that headache when she’s older is because of staying up late to study, drinking too much pop, or her shunt malfunctioning.

The thing we don’t have to worry about is taking anything for granted. Her firsts are always miracles. Her first smile in the NICU is engraved on the back of my eyelids. Her face, the first time I saw her without a feeding tube and nasal cannula. Her hair, now that its growing in and not being shaved for surgeries every other week. Her eyelashes. Her hand, and how huge it is compared to one of the first times I held her and she wrapped her entire arm around my THUMB. Every ounce of weight gain is celebrated. Every smile is remembered. Every laugh, every cry, these things prove that her lungs are in good shape and that she’s breathing.

Right now, she looks like any other 4 month old. But she is so much more.

Christmas Eve

Found this poem and thought I would share.  Merry Christmas from the  Minions!
http://www.preemiecare.org/jollynicu.htm
Jolly Old St. Nicu
‘Twas the night before Christmas, and in each isolette

Little creatures were squirming and getting all set;

Machinery sat by their bedsides with care,

In hopes that good breathing skills soon would be there.
Day shifters were home all snug in their beds,

As visions of overtime danced in their heads;

While preemies on ventilators, and some on CPAP,

Had just settled down for a long winter’s nap…
When out in the hall there arose such a clatter,

The residents woke up to see what was the matter.

Away from the sink I flew like a jet

To make sure all was well at my baby’s isolette.
Some bilirubin lights with their powerful glow

Gave the lustre of mid-day to babies below,

When, there before my wondering eyes, it would seem,

Was an oversized stroller and a medical team.

With a handful of needles with which they could stick you,

I knew in a moment it must be St. Nicu.
More rapid than eagles his specialists came,

And he whistled, and shouted, and called them by name:

“Now, Nurses! Now, Residents! Now, Neonatologists!

On, Social Workers! On, Respiratory and Occupational Therapists!

From the front of the unit! To the end of the hall!

Now dash away! Dash away! Dash away all!”
Up to each baby’s cribside they flew,

With the stroller full of toys, and St. Nicu too.

And then, in a twinkling, they stopped at each bed

And tucked in the babies and got them all fed.
As I looked at my baby, and was turning around,

Down our aisle St. Nicu came with a bound.

He was dressed in red scrubs, and I could instantly tell

That his clothes had an obvious hospital smell;

A bag of stuffed animals was flung on his back,

And he looked like a peddler just opening his pack.

A little red pen he held tight in his teeth,

And a stethoscope encircled his neck like a wreath.
He was chubby and plump, with a few extra pounds,

And I laughed when I saw him there doing his rounds.

A turn of his clipboard and a twist of his head

Soon gave me to know I had nothing to dread;

He spoke few words, but came straight to my side,

And running down his face was a tear he had cried.
And laying his hand on the back of my head,

He gave me a nod, and slowly he said:

“Each night you come here you’re aware of the danger,

But your baby is loved by the One in the manger.”
Then the medical team gave a thumbs-up and smiled

And St. Nicu placed an animal next to my child.

But I heard him exclaim, as they rolled out of sight,

“Merry Christmas, tiny baby, and have a wonderful night!”

Another day, another milestone…

LMM giggled for me today! She’s done it for Mr Minion because his beard tickles, but she wouldn’t do it for me until today. She’s sitting up much better on her own, especially on the couch. And, this afternoon…she stood up, holding her walker, BY HERSELF. It was only for a few seconds and then I caught her because she fell sideways, but WOW.   Assisted standing is usually closer to 8 or 9 months and she’s only 7 chronological, 4 adjusted. 

She really likes solids. Right now, she’s trying green beans. We are on Day 3 of green beans and then it’s time for prunes. I’d like to try that one, because I don’t think I’ve ever tasted a prune before. She’s also started wiping her face with her bib. She grabs a fistful of bib and just swishes her face around on it. Usually, the bib has some food on it, so she smears the food all over her face, but it’s still cute. And it’s really good fine motor skills development. 

Other than that, it s another day of being awesome in the Minion household. 

Researching

For the last couple of weeks, I’ve been wondering what the impact of LMM’s prematurity will be on her immune system and her lungs for the long term. Her NICU doctors said she would benefit from the one year of isolation, but what happens after that? The year of isolation is to keep her healthy while her body gets stronger and learns to start making antibodies. We can’t just flip a switch and take her everywhere, expecting her to be just like a full term 1 year old.

So I started doing research. I’ve read medical journals, medical research papers, I’ve read the hundreds of pages of various medical stuff we got from the NICU about preemies and immunity. I talked to her doctors and nurses about it during our 3 months in the NICU. The two things that I am most concerned about are her immunity issues and her lung function.

From everything I’ve read about immunity in preemies, especially ones born at LMM’s gestational age and weight, they don’t get the “baseline” of antibodies that full babies do. Full term babies would have gotten this baseline of antibodies through their mothers during the last three months of gestation. Since LMM was born on the very first day of her third trimester, she didn’t get this. She started life with barely any antibodies. She gets some through my breastmilk and through coming into contact with the air in our house, but the baseline wasn’t there for her. Its like when cancer patients get chemo and their immune systems basically don’t exist anymore. Chemo kills everything, leaving cancer patients very susceptible to illnesses. Prematurity prevents anything from being transferred to begin with, leaving preemies very susceptible to illnesses. Her one year of isolation isn’t just to keep her from getting sick, its to give her time to try to build up her baseline of antibodies.

I’ve heard of people saying “if you never take them out, they’ll never be able to build immunity.” In my opinion, this is one of the most insulting and idiotic things you could say in this situation. Being in isolation is difficult. The lack of social contact aside, its very difficult to function normally under isolation. Mr Minion and I take turns going to the grocery store, doing errands, picking up take out. Going out anywhere where there are crowds, like the grocery store or big box stores, requires lots of effort to not bring home illness. We don’t touch anything. We don’t have long conversations with people. We don’t get close to people. We are constantly on the lookout for coughing people, sniffling noses, red eyes. No hugs, please. No handshakes. When we get home, we wash our hands up to our elbows, change clothes, wash up again, and only then can we be around LMM.

Lung function issues are harder to research. There is plenty of data on preemies while they are “young” but not much long term data. I did find this article though. Its an article about preemies and lung function. Basically, the article says that they have done research and tests on preemies and the data shows that preemies, compared to full term babies, are still not showing the same amount of lung function at 15 months, 2 years, and even 3 years old. This means that respiratory illnesses will still hit them harder that far out into their lives. When will the weakness end?

Seven months!

Today is Little Miss Minion’s seven month birthday! She also had a pediatrician check up this morning, so I have lots of fun new stats for you. She is 23 inches long, and a whopping 12 pounds, 10 ounces! Her percentiles are: 50th percentile among very low birthweight girls, 25th percentile among low birthweight girls, and 3.77th percentile of full term babies, unadjusted for prematurity. That last one sounds bad, but she hasn’t ever really been “on the chart” before, so this is fantastic. Her head circumference is perfect, which is an important thing to look at with her hydrocephalus. Overall, it was a very good visit. 

She’s rolled over a couple more times this week. She has started spinning a toy on her bouncer, which shows that she’s starting to understand cause and effect. She likes it when I play peekaboo with her and she loves kisses and smiles. So far, she’s eaten rice cereal, oatmeal, sweet potatoes, apples, pears, and peas. She was holding a spoon while we fed her the other day and she shoved it in her mouth. She gets oatmeal in the morning, half a container of food at lunch, and a full one (if we’re sure she won’t have a reaction) for dinner. She’s also eating 4 ounces of breastmilk every couple hours still, since that is where most of the calories should come from for several more months. 

She likes to chat with us, especially in the mornings. She coos, we talk back to her, she coos again. Sometimes she gets really excited and squeals and screams. Her pediatrician and her physical therapist both say that she’s very social and a very happy baby. 

Synagis shot #2 is tomorrow. This is the RSV antibody injection that she will get once a month during RSV season. A new study I read about said that by the age of three, something like 95% of all babies will have gotten RSV. For full term babies, it usually presents as a cold, possibly requiring the use of a nebulizer–picture an oxygen mask with aerosoled medicine. For preemies, it usually presents as difficulty breathing, extreme lethargy, high fever, and blue-tinted lips and nails due to oxygen deprivation. Obviously, RSV is a big deal for preemies. Treatment involves admission to the hospital, being given oxygen, being put on a ventilator if the lungs are too weakened to work properly, and medication for inflamed and irritated airways and lungs. Secondary infections can include bronchiolitis and pneumonia, both of which are very bad news for a preemie with already-weakened lung function like LMM. 

The upshot of this: isolation is good. No people, no germs, no illness, and no hospital admissions. 

Giggling Goose

Mr Minion got LMM to giggle while he kissed and tickled her. She hasn’t giggled in direct response to us before, just squealing and cooing. She’s giggled before too, but not because of us doing something. I was able to tape it with my phone, which is a rarity because we don’t normally have our phones out with her. 

She is doing really, really well with solids. So far, she’s had sweet potatoes, apples, pears, and we started peas tonight. She also gets oatmeal cereal in the mornings, plus most of her food still comes from breastmilk. We actually went up a size on the bottle nipples because she’s getting impatient with the speed of the milk coming out.  We have her 4 month adjusted pediatrician appointment on Monday, followed by Synagis shot #2 on Tuesday, so I’ll have an official weight and length. 

Her physical therapist is happy with her progress as well. She still has some torticollis (neck tightness) from her last two surgeries, but it is getting better. She slept on the “tight” side last night and she’s started sleeping on that side in her swing, too. And she rolled over again today too! During her last PT, she sat up unassisted for about three minutes, which is really great. She’s very good at sitting. She also likes to be held in a standing position and put weight on her feet, which is really good because of her neurological stuff. I would say she can put about 80% of her weight on her feet without her knees buckling, and will sometimes take 100% while bouncing. 

Her favorite thing to do is still to smile at herself or us in the mirror. Her PT always says how social she is with us, although she is starting to develop the “stranger danger” reflex because she cries for a little while after the PT gets here. But she’s a month early on that, going by her chronological age, so yay!