Monday, September 26, 2011

Getting settled in and leaving the NICU

Leaving the hospital yesterday was bitter sweet.  It was hard to say good bye to Brielle and Rianne knowing I wouldn't be able to see them as much now. 

But it was exciting loading Teagan into the car and taking her home.  She did really well on the ride home and the first few hours at home, but then things got rocky. 

She decided she needed to continually cry unless we held her or slept in the nursery.  (They say twins and triplets can sense when their siblings aren't around and I believe it). 

We were warned that a change in environment can be hard for them to adjust to, but she seems to be setting in this morning.  She is already off her four hour schedule as of last night she seemed to want to eat every three hours. 

Her oxygen compressor makes a lot of noise and we aren't looking forward to adding another one when Brielle gets home.


Brielle had a rough night last night.  She had two spells, one of them requiring bagging.  She is having issues swallowing when she eats and we are hoping that it is due to reflux and the Prilosec they put her on will help.

Rianne had a rough morning eating as well.  A speech therapist is coming in today to feed her to see if they can determine if she has reflux as well or if something else is going on.

Rianne with her new hat...favorite sleeping pose with tongue out...

Teagan on her last day in the NICU

I know this is wrong, but I thought Aunt Jemima Pancake Syrup when I saw this, I don't know why...
Roger control, ready for take off...

The Eagle has landed

Sunday, September 25, 2011

Teagan's on her way home...Ri and Brielle will be a little longer...

Motley Crue serenades Teagan on her way out...



Certainly not for good behavior, but Teagan, as predicted by one of the nurses Pam, is the first to come home this evening. She'll be on oxygen. Though we wanted to do the room air challenge test, with cold/flu season our doctor thought it best for her to stay on it until her lungs are stronger, hopefully, within the month.

This blog blew up so all of the pictures have been erased and we have to re-upload them, but we just wanted you guys to know right now we expect Teagan home today, Rianne home Wednesday night and Brielle home Thursday.

Tuesday, September 20, 2011

Not quite ready

This week has been full of changes.  We planned on taking Rianne and Teagan home on Monday, but the girls didn't seem quite ready.  On Saturday night Rianne had a spell which means she has to stay at least another five days.  Teagan had her car seat test on Sunday night and failed twice using two different car seats. Teagan and Rianne have been breathing all on their own since Friday at 10:15 AM and are doing really well.  They do drop their sats a bit more than all of us are comfortable with so Teagan did not get the green light on Monday.  They are all still having a few hiccups when they eat so they will be staying till they get a bit better at eating.  We do have new estimated dates for discharge for them, but we will wait to post that news when they make it home.

Brielle failed her second room air challenge so she will be coming home on oxygen.  Tony and I along with the girls nanny will be learning how to use the equipment on Wednesday which requires an overnight stay for the parents. She might be discharged first since part of the oxygen equipment has monitors for her heart rate and oxygen saturation. 

We are excited to have the girls home, but don't want to take them away from all the monitors and extra hands until they are ready. 

They all had their hearing test this weekend and they all passed.  They all had another eye exam on Monday.  Ri has to be seen again in two weeks as she has slight changes in her retina.  Brielle and Teagan don't have to go through that torture again till they are a year old. 
Teagan modeling the hearing test gear.



Ri is 5 pounds 6 ounces.  Teagan is 4 pounds 14 ounces.  Brielle is 4 pounds 12 ounces.

Brielle getting some swing time (minus the swing motion) to help with her reflux.

Ri sleeping peacefully.

Aunt Mickenzie holding Teagan.

Aunt Megan holding Teagan.

Brielle enjoying being swaddled again after her diaper rash started healing.

Brielle with her new oxygen tubing stickers.

I don't have anything up my nose anymore!

First time we saw Teagan without any tubes on her face.

Sunday, September 18, 2011

NICU Thank You Poem

*** I added a page to the poem, missed some people and their they will be leaving the NICU a bit later than expected ***

As we see our time in the NICU coming to a close this month we thought about how to say thank you. We started writing and this poem came out of it.

I don't know how to add a .pdf file or .doc file so I just put it down here. Some of the beats are even, 5 or 6 on the left, same on the right, other times convention went out the window. It's a "aabb" rhyme or partial rhyme for the most part...anyway...

here goes...I didn't really have time to do much with it, but I may have a better version with some time for revision...ha...ha...time...!

Our NICU Stay
Our NICU stay, was at first a scare,
Confident we felt, with our nurses there,
Through our ups and downs, they held our weak hands,
Bundled our preemies, and told us the plan.

Gia’s the guardian, of that front door,
Make sure to wash hands, don’t infect this floor,
In a fishbowl of glass, and always watching out,
For more than two at a time, making grandparents pout. 

Whom does she root for? The Hawks or for Cy?
Cardinal and Gold’s my color, we found when we said bye,
We had our babies’ names picked, but what did we see,
Before we were even sure, the name plaques were three.

It began with chaos, sixteen in the room,
Making a place, where each girl cocooned,
Each day there was news, it wasn’t all bad,
But we needed help, both the mom and dad.

The NICU is hard, everyone will say,
Why is it so tough? No words can allay,
The worries of mothers and fathers,
Who just want the best for their daughters.
At the Mercy NICU, the best they will get,
Preemies get much help, parents don’t fret,
A walk down the hallway, shows their success,
Young lives saved, working with the best.

Let me introduce you, to our girls three,
Brielle, Teagan and Rianne, how proud can we be,
Brielle the cuddler, and we know for sure,
It was our nurses, giving a trait so pure.

Teagan was feisty, as we now know,
She would give presents. Oh, plug up your nose!
Rianne was biggest, but still needed air,
From the many angels, who guarded her care.

The first nurse I met, said come back in a while,
Wait half-hour at least, I couldn’t find a smile,
The preemies suffered, as needles went in,
PICC lines and more, tore through skin so thin.

Whence back I came, Dena I met,
Explained one and all, while working she kept,
Competent and caring, so sure with her skill,
Made Rianne feel better, try not to cry I will.

They are all doing fine, I wished to report back,
But so tiny and frail, kept me from saying that,
So many wires and tubes, hooked into the wall,
Why didn’t they cry, say anything at t’all?

When a child’s on a vent, not a sound can they make,
For you see they need help, with each breath they will take,
It will be okay, another nurse said to me,
Leeann was her name, and advice was my plea.  

Appreciate two steps forward, because there will be one back,
Her eyes were sincere, I knew this was fact,
So daily we visited, for hours and hours,
When the green scrubbed nurse came, we could not feel dour.

It began with a vent, it’s so hard to see,
Our children can’t breathe, like you and me,
Then came bubble CPAP, and we rejoiced,
It’s a first little step, our tears came so moist.

What’s wrong with Brielle?  She desatted again?
No not PDA! Indomethacin?
Her open duct closed, after the second dose,
Goodbye the surgeon, who stood watching close.

Thank goodness we said, our friends on the phone,
It’s good news again, could we leave her alone?
Then came infection, is it staph or strep?
Our nurses fixed that, thankfully we wept.

Is she in more danger? Yes, but we’ll keep her fed,
Save her life often, bring O2 to her bed.
Is this normal? Is this right?
How do we sleep through the night?

Yet progress we saw, in tiny small steps,
As our babies grew, one ounce then the next,
Is she down a liter or another percent?
Where’s the goldenrod sheet? Did they gain weight yet?

Each day two steps forward, and then another back,
Our nurses would say, they are right on track,
Sometimes it felt true, sometimes not so much,
They were in good hands, with a loving touch.

Poop we would welcome, with each diaper change,
Intestines are sound, they eat right on pace,
What about the crying, isn’t that a pain?
No, it means they’re breathing, we thank heaven the same!

The PICC line’s coming out! Oh my it’s so long,
That’s fine, that’s okay, they’re getting so strong,
Their room is clearing, IV poles are missing,
Another deep breath, another big blessing.

Our incubators are gone? Where did they go?
Are they getting better? Oh, please let me know!
They’ve moved to cribs, how can that be?
Didn’t we just get here? No, this is month three!

If they are in cribs, what is next we ask?
The room air challenge, that is their next task.
If they eat from the bottle, and breathe on their own,
We’ll write the papers, so they can go home.

No more transfusions? Not a PICC line?
Their retic count is high, they will be fine!
One at a time, they will go home,
Teague will go first, Ri dessated, Oh no!

Our room is now quiet, no alarms or bells,
No yellow light warns, or red panic toll knells,
We started thinking, how many have helped?
Get our girls to this point, it’s like a hundred we felt.

So many nights and days, away from their houses,
Our nurses would stay. Gosh, do they have spouses?
Kids of their own, they left for the floor,
To care for our preemies, could they give up any more?

At night we saw Patti, kids she had of her own,
Good advice she would give, and not let us get down,
Appreciate their progress, the glass is half-full,
I’ll take care of them now, that is no bull.

Okay, “bull” she wouldn’t say, but we knew for sure,
One look into her eyes, our girls behaved for her,
Overnight she worked, sacrifices she made,
That our family would prosper, while she stayed awake.

Sarah was another, a mom to-be herself,
So kind and caring, educating with a wealth,
Of knowledge we needed, to care for our three,
We pray and we hope, to term she will be. 

Bre gave us strength, when much we did lack,
Ever finding the time, to watch our kid’s back.
Triplet kangaroo? Why don’t we try?
One by one did she place, the three girls so spry.

Pam was so able, to turn them just a bit,
It kept them from flailing, and having a fit,
What about Heidi? She was great too,
Helping us daily, with what we must do.

Lisa taught daddy, to wrap them up tight,
They’ll squirm and wiggle, if you don’t do it right,
Jana, Crystal and Aubrey, Amanda and Luann,
Tara, Jayme and Maureen, did we mention Pam?

Holly, Kelly and Kelley, and Lindsey’s there’s two,
Those were our nurses, to name just a few,
On their graduation page, a document we’ll frame,
It’s their first diploma! That will remind us the same.

All the caring nurses, in off-time came to see,
How our little girls did, just three little preemies,
Yes, there are so many, how can I even try,
To thank everyone, for all they’ve done nigh.

What about cookies, or a big cake!
That’s just some food, a short time will it take,
For it to be gone, our thanks must last longer than that,
How about a poem, that won’t fall flat.

Not a bad idea, write words just a few,
With all they have done, it’s the least we can do,
For all our girls have, is ‘cause they stayed true,
To their job of caring, for three girls they hardly knew.

How could we forgot, seven doctors who helped,
Keep our kids well, when they did yelp,
Each morning they rounded, and came for emergencies too,
When our girls needed, a plan for a boost.

Bhasvar was the first, doctor we met,
Came while Mindy’s on bed rest, told us what to expect,
Make it to twenty-eight, he and others told us,
Goodness how do we do that, do we tie her legs close?

When they were born, it was doctor Murphy,
Tying their belly buttons, to avoid the IV,
Who’s the doctor? He’s nice, he lives around us,
Works out at the Y, benching 200 plus.

Also on the team, were doctors Katz and Reinsvold,
With added support from Fong, Ellsbury, and Nold.
All great doctors with questions we would soon ask,
What’s twenty-seven cal? A concept I couldn’t grasp.

Give them more calories, it’s now tough to digest,
But grow they must, so we think it’s best,
What about ROP, what the heck’s that?
An eye disorder, that preemies combat.

Necrotizing enterocolitis and RDS,
One we avoided, the other created a mess,
IVH we ducked, anemia we did not,
We’ll take every blessing, deal with what we’ve got.

Don’t forget about Betty, with her careful charting,
So we don’t have to try, to read doctor’s writing,
She’s got the laptop, to type it all in,
But she knows each preemie, and can tell who is in.
   
Terri’s all smiles, each time we see her,
Helping us fill big forms, that kill trees by the acre,
She gives green cards, so we can eat free,
Four dollars, hey, that’s diapers thirty-three!

What about Erin? She kept their heads round,
And helps with the preemies, if extra hands can’t be found,
The ultrasound tech, gels up the kids’ hair,
Makes them look like rockers, from the 80’s era,

Respiratory therapists who place in and remove,
Long tubes and devices, that will definitely prove,
The kids are better, they need O2 much less,
Help them push forward, refuse to regress.

The ophthalmologist, her job is so tough,
As parents cringe, watching her not be rough,
It’s hard for a baby, to open eyes wide,
But to avoid ROP, keep the eye doc bedside.

The nutritionist put in, this number and that,
Makes sure they grow big, but not really fat,
Mix formula with, the breast milk made,
Just the right dose, for a healthy babe.

Prepare to depart, get out of our hair,
Our nurses will joke, but we feel despair,
Because NICU nurses, were so vital to us,
Our kids will miss them, throw arms up and fuss.

Brielle leaves Wednesday, we hope and pray,
Then Ri and Teague, will follow Friday,
To think of three losses, we could have had,
Bring warm tears of thanks, from this mom and dad.



Friday, September 16, 2011

There is light at the end of the tunnel. And it's not a train....

Here's a little video of Brielle...


On Monday Teagan and Rianne pulled their feeding tubes out so we decided to see if they could eat a bottle every 3-4 hours. Rianne is still going strong and has been eating all by mouth for three full days.

Teagan got a little worn out and had a tube put back in late Tuesday night. Since then Teagan has slowly been building up her stamina and starting to eat by bottle again every 3 hours.

Brielle has done a much better job eating the past couple days.  She now remembers to to breathe before she turns blue.  She is eating 5-6 out of 8 bottles a day by mouth.  She doesn't want to be left in her sisters' dust.

Feeding a preemie is not the same as feeding a term baby.  They have to be held on their side so the milk pools in their cheek so they can better control the amount and rate that they swallow.  We have to help pace them as they often forget to breathe.  We have to make sure we watch their coloring.  If they start to get dusky or blue we have to stop feeding, stimulate them, and see if we can feel them taking breaths.

With all that said it is important that people who will be helping us out come to the hospital and get the proper training from the nurses.  My mom, dad, step-mom, sister who lives with us, and the nanny have all taken their first course.

My mom and dad each were given a bit of a scare from Rianne, our "training preemie" and I think they finally realized that these babies require special care and we aren't crazy for not letting them hold or care for them yet.
http://thepuddles.files.wordpress.com/2011/05/img_2561.jpg
It's like this, but with three!
 This was the first time for anyone other than Tony, the nurses, and I to hold the girls.
Craig having a good discussion with Ri about breathing!

Angie helping out as well...

Joy with excellent technique

Mom having a heart-to-heart about scaring her grandparents



Teagan finishing her whole bottle!

Tomorrow is the next room air challenge and we've set some encouraging lyrics for them!

http://www.flickdirect.com/images/movies/rocky-balboa/rocky-balboa_1.jpg
Risin' up, back on the bottle
Did my time, took my chances
Went the distance, now I'm back in my swaddle
Just a preemie and her will to thrive
Face to face, out of the incubator
Hangin' tough, stayin' hungry
They stack the odds 'til we take to the street
For we eat with the skill to thrive
It's the eye of the tiger, it's the cream of the fight
Risin' up to the challenge of our rival
And the last known preemie stalks her prey in the night
And she's watchin' us all in the eye of the tiger
If Rianne and Teagan don't pass (hopefully they will!) they will be sent home on oxygen.  Brielle is not as close to coming home so they will give her a little more time before they make the final decision on her which will hopefully be next week.

The girls stats:
Rianne 5 pounds 1 ounce
Teagan 4 pounds 8.8 ounces
Brielle 4 pounds 4.4 ounces.

Here's a pictorial preview of what it will look like if they come home soon...
And a little bit later...

Sunday, September 11, 2011

Sunday Night Update and Facetime

Head ultrasounds
The girls getting ready for ANOTHER procedure!
The girls had their second head ultrasound on Friday and they were all negative! This means that no brain damage developed from the times they went apneic.

Room air challenge
The girls all had a room air challenge on Saturday. Their nasal cannulas are removed and they test to see how long their oxygen saturation stays above 90. Teagan and Rianne were able to maintain that level for over 30 minutes, so they passed. Brielle plummeted down within 30 seconds so she failed meaning she has a form of bronchopulmonary dysphasia.

Here is an article from NIH on BPD.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002079/
We won't know the details till the doctor rounds on Monday. Teagan is down to a quarter liter of room air and so far so good. Rianne is at a half liter of room air and has had a few spells the past few days so she won't be weaned down yet. Brielle is at a half liter on 35% oxygen.

Eating
Brielle loves to eat and gets so excited that she forgets to breathe. She is only eating a couple meals by bottle and it's not an easy process. Teagan and Rianne are eating more than half their feedings by bottle and doing better at breathing while eating. You can really see how they eat, stop, breathe, then go at it again. Dad could take a lesson with his chips and cookies.
Eat. STOP. Breathe!

The physical therapist tried a special wrapping technique and Ri still got out of it. 

On the way to Fantasy Nails after she gets out...

The expression 10 fingers and 10 toes changed to 30 fingers and 30 toes for us...

Ri wouldn't go to sleep so we let her play "Angry Birds" on the iPhone for an hour and she was out!

Sleeping angel
I wish I knew what she was thinking...

Bri's more of a Word Find girl...

Bri: If I push just a little harder I think I can get the whole thing in my mouth! (one of my absolute favorite pictures!)

Almost...almost!

She did it. She finally ate her Binkie!
Kind of a Buddhist Monk look to Teagan

She kind of looks like one of those Thanksgiving horns...
http://www.kiddyhouse.com/Thanksgiving/hornplnty.gif
See!


Binkie!
 Facetime...

My parents hooked up Skype and asked me to load it on my computer so they could see the kids, but we found it easier to use Facetime, an app on the iPhone. My parents will call from their mac in their kitchen and I just point the iPhone camera to the kids and they can see them but more importantly, the girls got to hear their grandmother and grandfather from Maryland for the first time.
http://blogs.rep-am.com/time_out/files/2011/09/Miami-Maryland-Footba_lewi2edited.jpg
The girls said they liked the Maryland uniforms...it did look like a Paladin going into battle. Maryland's official sport is jousting of all things...go figure...