A step backward for one, good progress for two...

Brielle


Brielle started struggling on Wednesday night.  She was not able to keep her pulse ox up and her heart rate was dropping more than it had before and had to be bagged (given manual breaths to get her numbers back up) on Wednesday night.  The doctor decided to switch her from the CPAP to the vapotherm to see if that would help.  It was not the magical fix we were looking for.

Brielle after the CPAP was taken off trying to figure out what was going on.
Yes, that's Tony's nose.

 She had to be bagged again on Thursday morning so she was switched back to the CPAP with the extra vent breaths.  She had another spell Thursday afternoon and had to be bagged again.  The doctor decided to increase her vent rate and see how she did.  If she had one more spell they would intubate her and do a full work up to see if she had an infection.  I called at 2 AM on Friday and she had been doing fine.

Tiny Brielle before going back on the CPAP. She has this way of raising her eyebrows that makes you melt.

At 4 AM things went downhill again.  She had another bad spell and her work up began.  She was intubated, more blood was drawn, they put a catheter in to get a urine sample, they did a spinal tap to culture her cerebral spinal fluid, and took a sample from her airway to culture that as well.

Poor thing clutching the vent.

So far her blood sample is normal, her urine culture was negative, and her airway culture shows some staph.  We are still waiting for the full results of the airway and CSF cultures.

The vent has been helping her get some energy back.  She opens her eyes again and is moving around more then she had been.

Finally getting some life back in her.

Teagan

On Thursday Teagan got put on the vapotherm as well!  She did wonderfully.  The settings range from 1-6 liters of oxygen pressure.  She started at 6 and is now at 3 without any spells!  Our little peanut has now become the leader of the pack.  She is eating 10 ml's every 3 hours and weighs 2 pounds 2 ounces.

Teagan screamed the whole time they changed her from the CPAP.

 The nurses pleaded "Teagan, Help me to Help you!"

She can finally put her hands up without having big tubes in the way. Now she's doing the Pilates Flutter Kick.
Shellie Ship that's for you...

Won't be long before they are at the Ankeny Y swimming their hearts out!

We can finally see her face! Still not sure who she looks like.

Cuddle time with daddy. Why doesn't daddy have to wear a bonnet?

Rianne

Rianne was also changed from the CPAP and has been doing well.  She is currently at 5 liters and has been spell free for over 24 hours!  She is having a little problems with her feedings and is still at 7 ml's every 3 hours.  Her weight is up a bit to 2 pounds 5 ounces.

After the CPAP was taken off....Man, I have been trying to get to this booger for weeks!

Not sure who she looks like either. 

Rianne and Teagan have graduated to the next diaper size, not because they are bigger but because their ... excretions require a larger catcher's mitt.

An Interview from the Bubble (s) at Two weeks old

The girls are two weeks old today and getting feistier each day. The girls have made it through some tough times and had a few words for their fans. They said they feel like fish looking out from an aquarium and are looking forward to getting out of their bubbles.

During movie time they saw Jake Gyllenhaal's Bubble Boy and all I heard was a quiet, gently bitter whisper of "very funny, daddy... maybe I'll stick to "Nemo" and "Under the Sea" for now...

Rianne

How are you doing since you left the womb? At first I was really excited to get my own apartment here on the Mercy 4th floor but I kind of miss hanging out with my girls Bri and Teague. Looking forward to some triple crib time.

Rianne showing off her bow. So tough to get those cute baby pictures with SCUBA gear on...maybe put us next to a SCUBA pet...

This is my "what idiot forgot cats don't like water" face

Heard you've had some health problems since you got out. How are you now?
I've still had a bunch of spells but they have been fewer the past few days, it really helps when mommy comes by to kangaroo because it calms me down.

What's it like being in the bubble? I mean, being in that bubble is like being in a clear glass elevator looking one direction all the time. I'm like a human sun dial. Look straight up for three hours. Turn right for three hours. On my belly for three hours. Turn left for 3 hours. Repeat.

Child abuse. 12'O'Clock. Ding. Child Abuse 1 O'Clock. Ding.

You came out at two pounds and have made it to 2 pounds, 3 ounces...are you ready for the big sister role? I know I got in trouble for trying to come out at 19 weeks and I was just trying to help my girls out ya' know. But it all worked out. I do want to take this chance to apologize to mommy for kicking her privates for those 9 weeks she was on hospital bed rest. You really don't know which way is up when you're deaf, blind and in a pool of fluid filled with your own pee...for the record...

Rianne brings home a great report card!

Any goals for next week? I'm just looking forward to eating more breast milk and weaning off the TPN.

I heard daddy whisper, "can they really survive on just breast milk?" Ummm...maybe one of our fans could buy him a baby book before he starts trying to rehydrate us with Desani water or Gatorade G2's...he teaches Anatomy or something like that, doesn't he?

Teagan

Teagan, you started off really struggling to breathe and had to spend a lot of time on the vent, now you've made some big strides. Can you give us details?  Sure. Let me shove a long plastic tube down your trachea and let's see how you do? Kidding...bitter much?...I was just voicing my objections and each time I tried to talk it came out as waaah...waaah...waaah...so my vocabulary needs some work. I hear I talk in my sleep and it still comes out as waaah...waaah...waaah...so I'm looking forward to Kindergarten so I can say, "could you please get that out of my throat, I can breathe on my own."

To follow up, I've been the respiratory leader and given mommy and daddy lots of poopy presents with my 7 mL per 3 hours feedings. Here's a picture I took of daddy changing a diaper...

I'm smiling on the outside changing the poopy diaper, but that is methane fog in the bubble...

Lift up both legs, not one...now, left velcro strap, now, right velcro strap...maybe after the first 1000 diapers...

I'm gonna just close my eyes and put my hands over my ears....

 You've been pegged as the "trouble maker", how do you respond to those allegations? I'm not the cuddlier of the three and I've had some tough kangarooing sessions, but today with mommy I fell asleep and we had a good time. I guess I'd like to articulate what it's like to have an autonomic nervous system that can only do one thing at a time. 

Did I forget my keys? No. I'm two weeks old. I don't drive. Did I forget my purse...Not really much use for money right. S@#$ I forgot to breathe. I know that seems nuts but we are given caffeine to stimulate our nervous system and sometimes it's hard to think...

I look like someone dropped a head on a diaper...get me out of here!

Any other thoughts? Well, I'm eating well at 7 ml's every 3 hours, had a good kangarooing session with mom today, my weight is up to 1 pound 14 ounces and I hear I'm going to get to increase my feeds and wean of the TPN and switch from CPAP to nasal cannula. Otherwise, just looking for some time with my sisters...

Teagan's Report card brings a tear to the eye

Brielle

Brielle had a tough week and wanted Teagan to speak for her this week. Teague, what happened with Brielle? 


Since her PDA closed her spells have improved.  She still has them but they haven't been as frequent or severe.  Bri enjoys kangaroo time as well.  She is able to eat again now and currently gets 2ml's every 3 hours.  She currently weighs 1 pound 14 ounces. Her goal for the next week is to be able to increase her feeds and get off the back up vent.

No surgery! Now I can sleep like a ... well, baby... I was really worried...

I'm Brielle, not Teagan, you don't have to tie me up like this!!!

Pretty good numbers for having no food for the last 3 days (she got lipids/liquids, just no breast milk)

Quick Weekend Update

7/25/2011

Brielle's Patent Ductus Arteriosus Closed! No surgery!

7/24/2011

Each baby is really, really different in their personalities and I can't wait...okay, maybe I can wait to see what they are like when they start talking. The Lutheran Church of Hope has been phenomenal in their support of our trials and a representative came in today to pray with and for us. Funny, each girl responded to this in her own way.Brielle, noting there are no Saint Brielle's to speak of, took the pious approach hoping that one day her name gets called:

God bless mommy, daddy, Rianne, Teagan and the nice nurses and doctors who take care of me and for all the other babies in the NICU...Amen. Oh, wait, p.s., please close my ductus arteriosus so I can quit having these darn breathing spells and get fed breast milk again ... Amen...p.s.s. Please help Mr. Obama figure out the National Debt thing...it's stressing me out...Amen.

The doctor today noticed an improvement in the murmur (Sunday 7/24/2011) and we hope that the echocardiogram tomorrow gives us good news. Otherwise Brielle will need to go under the ... I would say knife, but that is a horrible visual. As far as I understand there is no physical knife anymore, rather it's an instrument that gently separates skin for the surgeon...

so to help our cause, Brielle organized a small prayer group to help out...

Probably the best of the group...

And all God's creatures are included!

Adorable...

Ummm...maybe a little staged...

On the naughty list is Teagan. While she has done very well with her feedings, up to 5 mL very 3 hours, she had a little trouble breathing through her nose and tried to breathe through her mouth bringing her oxygen levels down...so she has earned the dreaded...chinstrap...

Are you kidding me, I look like that Napoleon Dynamite kid...c'mon...get this thing off me...

For those of you not familiar with our friend Napoleon:

Actually from Benchwarmers the movie, but no one knows who Jon Heder is...

Finally, Rianne has been sooooo difficult to handle she has been super swaddled into this cocoon looking thing thinking she's ready for transport home...Sorry, Ri, it will be a while...

Ri recently made an appearance in a children's movie you may have seen recently...Gnomeo and Juliet...she's just all nose right now...just FYI there is a big plastic nose piece on her, she is not a boxer with one too many hits to the middle of the face.

Rianne as Juliet...

Don't worry kids we'll make a place for you when it's time to go, we'll just get the dog out of the way...

Just one of those pictures that doesn't really need a caption...

Update 7 21 2011 and One Week Old's Blog...

Update from 7/21/2011 what is below the update is 7/20/2011's Blog...

A bit of bad news hit us today as the cardiologist was called in to help definitively determine the source of Brielle's bad breathing spells. He confirmed what Dr. Murphy suspected - a diagnosis of Patent Ductus Arteriosus.. 

From PubMed: Patent ductus arteriosus (PDA) is a condition in which a blood vessel called the ductus arteriosus fails to close normally in an infant soon after birth. (The word "patent" means open.)
The condition leads to abnormal blood flow between the aorta and pulmonary artery, two major blood vessels that carry blood from the heart.

It means she is not oxygenating because of this altered blood flow and extra fluid that might be hitting the lungs. It's good to know what has been causing the effects but now we are again in a crossing our fingers mode. The treatment is Indomethacin, which to a normal adult is no problem, however, the pediatric cardiologist told us that it shuts down a number of vessels and she may need 2 or 3 tries at it. If it is not successful then surgery is required.

My first question was how in the world can you do a surgery on someone so small so I found a 900 gram baby that had this surgery. To me it was encouraging to see that it all happened in a few minutes, if it is needed at all. Hopefully, the indomethacin will do the trick.

http://www.youtube.com/watch?v=SOj6K_BoIAc&feature=related

7/20/2011
Our precious baby girls have made it through their first week in the NICU.  We hope over this next week that they start gaining weight and grow big for their mommy and daddy.

Or as the gamers say, it's time to level up. (that's for you Chris G. ...)

Rianne

Doing well on her CPAP.  She has had 6-8 apnea episodes in 24 hours and we are hoping that they decrease this week.  The doctor is giving her an extra dose of caffeine each day to see if that helps.  We I mean they had a wonderful nurse on Tuesday.  She made Ri a new CPAP had and added an extra nose piece to try and help her keep her CPAP in her nose better and a chin strap.  Ri likes to tug on the CPAP with her hands or turn her head to knock it out.  Since her new hat she has gone over 24 hours without a single episode!!!!!!!!!  She is now longer on phototherapy and can be swaddled up again! (When she is on her back she likes to kick her legs out of her wrap).

Toga! Toga! Toga!

The most famous chinstraps...Ponch and John from CHiPs!

Is that a preemie blanket, or a "cloak of invisibility?"

Teagan

She was taken off the high frequency vent on Monday!  She is now on the regular vent and her settings continue to be decreased each day.  If she stays stable she will be on the CPAP this weekend!  She also has started her feedings again and is tolerating them very well.  Mindy was able to hold her for the first time on July 20th.  She was wide awake for a while then fell asleep.

Please keep your hands inside the ride at all times...

What?  A Glycerin suppository...I'll pass...

Look...I really just don't do much...I just kind of lie here...

So Mindy bet me the Barnstormers would have a winning season...holla!

Brielle
She is on the CPAP now and tolerated it very well the first couple days.  She currently has 3-4 apnea episodes a day where her heart rate and oxygen saturation drops.  She is also being given an extra dose of caffeine to see how she responds to it.  We are hoping she starts breathing a little easier as her episodes really worry her mommy and daddy.  We were able to kangaroo with her on Monday night.  She loved it.  She slept peacefully the whole time.  She did open her eyes a couple times when Ri started crying.  She is also no longer on phototherapy and can be swaddled up again.  She hates being on her back and lays with her hand by her face the whole time.  It is a way for babies to self-sooth.

Mom and Dad are presented with the "triplets" coffee mug

Brielle practicing putting the cell phone to her head

I think I got a boogie in my nose piece....little help...Kleenex... my hands are a little tied up...

Brielle's in on Fantasy Football Keeper League if there's a season...

Head Ultrasounds
They were all negative meaning no brain bleeds!  They will have another one at 36 weeks to make sure they are still doing okay, but the doctor and nurses were very excited about the good results. 

PT Consult
The girls all are progressing normally and PT does not have to make any interventions at this time!

The Parents
Mindy is able to spend more time with the girls each day but still gets tired easily.  On Monday and Tuesday she took a 5 hour nap in the afternoon and still slept 8 hours each night.

Mindy finds Wonder Bread to be an excellent pillow...

 Her incision site is healing slowly.

Tony suggests some subtle covering for the incision...

 She doesn't have as much pain but still has trouble going from laying down to sitting up.  She sleeps on the couch to try to minimize her movements.  The girls have had two good days in a row which helps Mindy emotionally.  She still has a hard time leaving the girls each day but it is a lot easier when they are doing well and the extra rest makes Mindy feel a little stronger each day.


Tony's foot is in a boot now.  The doctor thinks he has a stress fracture in his left tibia so he will be sporting the boot for the next three weeks.  We hope that does the trick and his pain will ease up.

Tony, at 39, has 2 good NFL years in him with one more bad ankle!