Riding the NICU Rollercoaster...

13 Weeks, 3 Months, Corrected Age 38 Weeks...

Please forgive me if my writing is somewhat truncated this post.  I will do my best to update you with everything that has occurred in the past two weeks.

Room Air

Saturday, September 21, 2013 Adam and I arrived at the NICU to find both Zoe and Isabelle on room air.  That's right, neither girl was receiving any respiratory support.  We were ecstatic!  Ok, truth be told, it took me a little bit to catch up because I was not expecting the doctors to make the jump, but we were ecstatic once we caught up.

Sunday, September 22, 2013, Cecilia was able to join the room air club as well. 

All the girls have been doing wonderful on room air and we are hopeful that once we are finally able to go home, we will not require any oxygen!  YEY!

It's Time to EAT!!

As a result of the girls coming off their respiratory support they have all been cleared to start nursing!  Talk about a milestone!!

The boys might want to skip this section  : )  Nursing is not natural.  I don't know who ever thought it was.  It hurts.  It's awkward.  It's exhausting and frustrating.  The lactation consultant stops by to assist with the first few nursings (or in my case after the first weekend) and jumps right in with her hands.  After her tutorial, I was like "You know I only have two hands right?!?!" 

With my two hands, her two hands and an assist from a nurse, we finally were able to get a latch.  I kept thinking to myself there is no way I am only to be able to maneuver my hands and body to become proficient at breastfeeding. 

Fast forward one week ~ I am able to get all three girls to latch on by myself!  Yes, I am patting myself on the back for this accomplishment.  Don't get me wrong, it still hurts.  It's still awkward.  It's definitely still exhausting and frustrating.  BUT, I can do it by myself now.

The challenge is trying to learn the nuances of three separate babies and to get in separate fees for all the girls so they can learn themselves.  An additional challenge is to not get frustrated when the feeds don't go well along with not pushing too hard despite the pressure from certain nurses to move in fast forward rather than learning at a comfortable pace.  Sometimes it feels as if the nurses don't adjust the "normal" learning curve to accommodate for triplets...Oh well.  We'll get there.  It will just be on the girls' timetable and no one else's.

To make you smile ~ Isabelle acts like she has never eaten and goes nuts when it is time to nurse.  She is definitely our monster baby!

The Eyes Have It...

Glaucoma.  No it is not just a word/disease associated with adults (or our grandparents). 

Glaucoma.  Yes it is just as scary, if not scarier when hearing the term muttered in relation to your children. 

Glaucoma.  Congenital Glaucoma.  1 in 10,000 babies. Zoe.

Zoe has been diagnosed with congenital glaucoma and will undergo a goniotomy on Thursday, October 4, 2013.  The surgery will be performed by one of the hospital's pediatric ophthalmologists along with a glaucoma specialist.  Poor Zoe will have to be put back under general anesthesia and intubated for the surgery. 

While Zoe is under anesthesia the retinal specialist will also take a look at her eyes to ensure she has not developed any retinal detachment as a side effect of her laser ROP surgery from last month.

Additionally, Dr. Istitani will step in an repair Zoe's hernia while she is under.  Poor little girl will have two examinations and two procedures under anesthesia in one afternoon. 

Please say your prayers that the surgeries go well and are successful.  The goniotomy will hopefully be a success and Zoe will not have to undergo multiple repeat surgeries to repair her eyes and will not go blind from the disease. 

Sick Baby

Unfortunately not everyday is a good day in the NICU.  On Thursday, September 26, 2013, Zoe got very sick.  She started the day being paired with another baby and by 11 a.m she was solo.  She kept dipping her oxygen saturations and dropping her heart rate.  The neonatologists ran tests for infection and everyone was nervous.  At one point the nursing staff could not leave her bedside. 

Needless to say, neither could I.  I wound up spending the night at the hospital and while I was huddled up next to Zoe, in walked Adam.  He couldn't stay away either.  We had a sick baby. 

She's struggling to do better and has had better moments recently.  However on Tuesday night she decided she didn't want to breathe at all and a code was called.  Codes are always nerve wrecking, but oddly reassuring, as an onslaught of people come rushing into the room all with the same vested interest of saving your daughter. 

Zoe decided she wanted to breathe again, and gave everyone a little squawk.  We are hopeful that she will feel better after her surgeries on Thursday.

Still Our Runt Baby.

Poor Cecilia is having the most difficult time gaining weight and has become a medical mystery for the doctors.  As it stands Cecilia has been struggling her entire life but in the last three weeks her weight gain has become non-existent.  For comparisons, she is over 500 grams behind in weight than her sisters. 

The neonatologists, along with the dietician, have tried everything supplement wise they can think of to get her to gain weight and stop dumping out of her ostame.  Unfortunately, nothing is working.  As a result, the pediatric gastrointestinal team has been consulted.  A complete workup was done on Cecilia including blood cultures, liver enzymes, and thyroid tests. 

In order to help Cecilia gain weight she will be going back on TPN (intravenous nutrition).  This is not ideal, but we are definitely in a situation where we hope the ends will justify the means.  We need her to reach 1900 grams in order for Dr. Istitani to do her "Humpty Dumpty" surgery (get put back together again).  This is the "friends and family discount" as most doctors will not consider the surgery until a baby is at least 2500 grams.  I'm about ready to start sewing weights into her diapers...

Grandmas' First Time

Despite all the negative going on, we did have a couple good days which allowed the grandmas to come visit which allowed us to give them a very special gift.  Grandma Jan and Grandma Jamie have not each been able to hold their granddaughters. 

It was such an emotional moment for each Grandma and the girls absolutely loved being loved by them.  We are so incredibly blessed to have such wonderful mothers who in return are amazing Grandmothers to our daughters.  Thank you Moms.

Another One Bites the Dust

Sadly, we have lost another one of our favorite nurses.  Nurse Ashley dropped the bomb that she was leaving Mayo and Sunday would be her last shift.  Thankfully we had the pleasure of having Ashley take care of our girls for three months.  She ended her time at Mayo by watching Zoe and Zoe in return baked her farewell cookies.  Ashley will be greatly missed but we wish her and her family nothing but love on their new journey.  (She better keep in touch ~ if for nothing else but to talk college football with Adam!).  Ashley you will be greatly missed!

We love you all and are so incredibly grateful for your kindness, consideration, and generosity.  Thank you.

Love,

Adam & daneille