Home Sweet Home

Our Bittersweet Journey

Going Home

Yes you read that correctly.  We are going home...at least three of us are.  Zoe, Isabelle and I are going home.

Zoe and Isabelle have been making major strides and the doctors are confident that they are able to go home.  Both girls had their caffeine discontinued last week and have had no episodes of apnea or other difficulties.  Both girls are taking all of their feeds by mouth.  Both girls are ready to go home. 

Adam and I are beyond excited and scared out of our minds.  Will the girls survive off their monitors?  Will we be able to recognize the signs of something going wrong?  Will we be able to handle their needs at home?  We've been wishing for this day but now that it's here, we simply do not know how to feel...

What complicates matters is that Cecilia must stay in the NICU.  Our family will be separated...again.  It is incredibly difficult to be excited about bringing Zoe and Isabelle home without feeling guilty for leaving Cecilia in the hospital.  And at the same time it is hard not to be happy about walking away from the hospital and celebrating the health of two of our beautiful daughters.  It is completely bittersweet.

Friday, October 25, 2013

Happy Birthday Popa Tom!  Your present is Zoe and Isabelle coming home!  Friday afternoon we packed up an entirely overfilled Suburban along with Zoe and Isabelle and made the trek back to Eau Claire.  Before we left, I was holding Cecilia having an incredible time leaving her.  Thankfully Patti was her nurse, and she was able to take Cecilia from my arms so we could leave.  I cannot describe how heartbreaking it was to leave the NICU without her.



As we drove away from the hospital, leaving Cecilia in our rearview mirror, we had to hold onto hope that one day we would all be together again.  So many people would comment as we left about twins and Adam, bless his heart, corrected each one saying, "No triplets."  One day we will all be together again as a family. 

Humpty Dumpty Surgery

When will that be...Well the doctors are hoping by Christmas, needless to say Adam and I are hoping for much sooner than that (like Thanksgiving!!). 

Cecilia will undergo her Humpty Dumpty Surgery on Friday, November 1, 2013.  She hit the magic number of 1900 grams on Monday and was 2 kilos today.  Dr. Ishitani checked on her and said she's ready to be put back together.

Friday she will go back downstairs for her sixth, and hopefully last, surgery.  The surgery is quite complicated and extensive lasting approximately 5-6 hours from start to finish.  Adam and I will make the surgery back to be with Cecilia and would appreciate all of your prayers for her safe keeping during this time.  Zoe and Isabelle will spend the day with Grandma Jan (we are incredibly lucky to have Adam's mom staying with us while we learn how to parent our girls).

Thank You Grandma Jan

We could not do this without you.

Love,

Adam & daneille

Another Surgery for Cecilia...

This time it's laser for the eyes...

Wednesday, October 16, 2013

On Wednesday, Cecilia had another ROP check on her eyes, which unfortunately revealed signs of worsening ROP.  Dr. Brodsky consulted with Dr. Iezzi, the retina specialist, who immediately, without seeing Cecilia, stated she needed to have laser surgery - the next day!

We knew that one day Cecilia would probably need to have laser surgery, as the avastin injections were simply a way to buy us more time.  What we did not know, or what I wasn't anticipating, was Cecilia having to have surgery this quickly. 

On the bright side, if there is one, Cecilia was already intubated and inpatient. 

Thursday, October 17, 2013

Dr. Iezzi took Cecilia down to surgery this morning for laser surgery and I anxiously awaited word on the outcome upstairs with Isabelle and Zoe.

Dr. Iezzi came up about 2.5 hours later stating Cecilia did wonderful and that he actually was required to use less laser than even he had anticipated.  Cecilia needed less surgery than even Isabelle and Zoe had required.  Overall, the surgery was a tremendous success with follow up to occur in one week.

Zoe Elizabeth

Before leaving for a conference in Chicago, and right after performing surgery on Cecilia, Dr. Iezzi completed the second follow up check on Zoe's eyes following her retina detachment surgery...She's healing well and Dr. Iezzi plans to see her next week for another exam.

We continue to hold our breath and pray for wonderful outcomes for our daughters...

Happy Birthday

Day of Life 107 ~ Gestational Age 40 Weeks ~ Adjusted Age Day 0

Wednesday, October 16, 2013

My original Due Date

The girls arrived 107 days ago

Today was full of bittersweet moments.  While we are amazed that our due date has finally arrived, it is a challenge to realize our baby girls have been suffering and thriving for 107 days. 


Our girls are simply wonderful and we are completely blessed.  While the road may be rocky for us, we are so incredibly blessed to even have the luck to be on this journey. 

I won't lie, there are times it is difficult to remember that notion.  There are many times when it is easier to get lost in the sadness and frustration of our NICU stay.  However, on those days, we just need to step back, take a breath, and look at our beautiful baby girls.  We are blessed.



Thank you for all of your love and support over the last 107 days.  We love you all.

Always,

Adam & daneille

Retinal Detachment Surgery

Hi Ho, Hi Ho, It's Off to Michigan We Go...

Our family was placed in what felt like an impossible situation.  Zoe needed to go to Michigan while Cecilia and Isabelle would be left in Minnesota.  No one could tell us how long Zoe would need to be gone but there was no question we needed to go.  Someone needed to go with Zoe, but someone needed to stay with Cecilia and Isabelle.  I needed to do both, but I could not do both.

On Sunday, October 6, Zoe and I got on a plane and flew to Michigan to see the top retina surgeon in the country.  Little did we know, Adam had driven to the airport to watch our flight take off.  We flew on a fixed-wing private jet ~ truly the only way to fly. 

We arrived in Royal Oaks, Michigan, at Beaumont Hospital on Sunday afternoon for surgery on Monday morning.  As the transport team left us in Michigan, we felt very much alone missing our family.

Monday Morning

Zoe was prepped for surgery and we met with Dr. Trese (a very nice man I might add).  Dr. Trese explained that Zoe would once again be placed under anesthesia for an exam before he performed a vitrectomy on her left eye.  Unfortunately the exam revealed bleeding in the eye between the cornea and the iris, as well as fibrem (excess debris, inflammatory material and blood) on the lens, both of which blocked Dr. Trese's ability to see the back of Zoe's eye thereby circumventing his ability to perform the surgery.

Zoe would need to wait until the blood drained and fibrem dissipated before the vitrectomy could be performed.  However we had a very small window of time in which to complete the surgery.  Most retinal detachment repair operations are urgent. A detached retina lacks oxygen, which causes cells in the area to die. This can lead to blindness. 

The window of time to preserve more of Zoe's vision was closing fast.  Her best chances were to have the surgery performed prior to reaching 40 weeks gestational age (at the time Zoe was 38 weeks, 5 days).  Surgery before 40 weeks would allow Zoe's retina to possibly reattach itself post surgery.

To assist in the process, Zoe needed to be placed at a 45 degree angle to allow the blood to drain out of her eye.  If we could not get the blood to drain, Zoe would still require the surgery the following Monday, October 14, however the surgeons would be required to take her lens, which in all essence would negate the hard work of trying to preserve her vision. 

Each day the surgeons would come up to the NICU to examine Zoe's eye to see if the blood was draining and the fibrem was clearing.  Each day we held our breath, hoping for the best...Upon Zoe's exam on Wednesday, we got some promising news, there was improvement.  Enough improvement that an OR was booked for Friday, October 11.  Zoe would still need to be examined on both Thursday and Friday to ensure the surgeons could see to the back of the eye to perform the vitrectomy, but easier to cancel the OR than get one the same morning.

Friday morning Dr. Capone (the younger version of Dr. Trese) arrived to exam Zoe and gave us wonderful news!  The blood, while not 100% gone, had drained almost completely and the fibrem was gone!  Both would allow Zoe to keep her lens!  The vitrectomy was performed and Dr. Capone, in addition to saving Zoe's lens, was able to perform the surgery without placing an air bubble in the eye, which would allow us to travel back to Minnesota much sooner.

Most patients are required to stay in Michigan for 2-3 weeks post-op.  Zoe had surgery on Friday and Dr. Capone cleared us to travel on Saturday!!  The Neonatologists in Michigan however were not too keen on transporting us that soon despite the fact that Mayo was more than willing to take us back (they missed Zoe!).  As a result, we spent the weekend in Michigan until the neonatologists were able to have a conversation with Dr. Capone. 

So we waited...

On Monday, after multiple conversations with Dr. Capone and Mayo, transport was set up for Tuesday!!  That was only 4 days post-op!!  Dr. Capone felt there was no need to keep us in Michigan given our circumstances of having two more children in a NICU at Mayo and the availability of Dr. Iezzi to examine Zoe upon our return to Minnesota. 

Transport was set up for Tuesday morning and we could not be more excited to go back to our Mayo-Home!! 

While waiting for transport, Uncle Ken and Aunt Linda were able to travel to Royal Oaks to meet Miss Zoe.  We had a wonderful visit and Zoe enjoyed showing off.

Tuesday we traveled back to our Mayo-Home and were able to see Isabelle and Cecilia...Speaking of which...

On the Sunday Zoe and I flew to Michigan, Cecilia developed a staff infection and was under respiratory distress.  She underwent a series of antibiotics but unfortunately was not getting much better.  Upon our return to Mayo, Cecilia was having a much more difficult time and within 30 minutes of our arrival home, Cecilia needed to be intubated...

Surgery for Zoe

Two Different Kinds

Thursday, October 3, 2013, Zoe was taken down to surgery...again.

First she was placed under anesthesia for a general exam for both glaucoma and follow up for her laser eye surgery.  She had three surgeons poking around in her eyes while I patiently waited in the surgical waiting room for word on how extensive her glaucoma surgery would be...I never expected what I heard...

Dr. Mooney came out to inform me that in fact Zoe did appear to have congenital glaucoma requiring a goniotomy in both eyes.  Unfortunately, Dr. Iezzi, upon his examination of Zoe's retinas (follow up from the laser surgery), showed the initial beginnings of retinal detachment.  Talk about a punch in the gut!  But more to that later...

Dr. Mooney and Dr. Sit (glaucoma specialist) went back into Zoe and performed a goniotomy on both eyes.  Additionally, Dr. Sit diagnosed Zoe with angle closure glaucoma in the left eye. 

http://www.surgeryencyclopedia.com/Fi-La/Iridectomy.html

As a result, Dr. Sit performed an iridectomy.  He removed a small portion of Zoe's iris on her left eye.  It's been explained to us we will never be able to tell unless Zoe opens her eyes really wide (which she tends to do). 

Overall the glaucoma surgeries were a success.  Small victory numbers 1 and 2 for the day. 

After Zoe's glaucoma surgeries and before she was brought back upstairs, Dr. Ishitani performed hernia surgery on Zoe!  Zoe had an inguinal hernia, which required surgery before going home, and timing worked out for Dr. Ishitani to piggy back onto her eye surgery. 

Dr. Ishitani prepared the hernia on her left side and explored her right side to confirm there was no hernia there as well.  Post op note:  Dr. Ishitani cut designs into her dressings to cover her incisions.  He cut her a puppy (for Gus) and a star (because she is a rockstar).  Dr. Ishitani is wonderful and I trust him 100% with the girls. 

Back to the retinal detachment...

Remember Zoe underwent laser eye surgery weeks ago to protect her eyes due to her advancing ROP disease.  Unfortunately, a very small number of patients who under laser treatment will still suffer a retinal detachment and Zoe has fallen into this category.

Dr. Iezzi identified a level 4A retinal detachment (4A is the smallest detachment as opposed to a 4B or 5).  If the retina detaches Zoe could lose her vision entirely.  Accordingly, Dr. Iezzi made numerous phone calls while Zoe was undergoing her glaucoma procedures to arrange for another surgery for Zoe.

Unfortunately the retinal detachment surgeries are not performed at Mayo Clinic.  There are eight surgeons in the country who perform retinal detachment surgeries are babies of Zoe's size.  One just so happened to be located at Children's Hospital in the Cities - Just so happens though, he was on vacation for a week and a half.  Zoe could not wait a week and a half.

Thankfully, Dr. Iezzi is friends with Dr. Trese, the top retina specialist in the country.  Of the eight surgeons (including himself) he has trained 6 of them!  Dr. Trese, however, is located in Michigan...

Dr. Trese agreed to take Zoe's case and scheduled her for surgery on Monday morning (October 7).  Surgery was scheduled before transport was even arranged...yes Zoe has to go to Michigan.

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   

 

One Day At A Time...

Day of Life 77 ~ Corrected Gestational Age 35 Weeks, 5 Days

It seems as if so much has happened yet nothing has happened since our last update.  Truth be told, that is the journey of the NICU.  To feel like everything is happening yet nothing is progressing...



Cecilia has recovered quite nicely from her eye surgery.  Unfortunately she is having a difficult time gaining and maintaining weight.  Sunday she weighed 1160 grams or 2 lbs, 8.9 oz.  She is still very little, but she is a fighter. 

On Sunday, Cecilia was transitioned to a high flow nasal cannula at a rate of 4 liters.  This is a step in the right direction.  Currently she is having a difficult time with the transition but hopefully she will get the hang of it soon.  The doctors are willing to let her have "a good college try" at it before moving back to the Ram if necessary. 


Unfortunately, the road continues to be tumultuous for Cecilia.  On Saturday, I noticed her left index finger was swollen at the bottom joint (closest to the palm).  I started calling it a funnel finger.  On Monday we took XRAYS and did an ultrasound to confirm that her finger is in fact fractured.  We've been told that breaks and fractures are typical in micro preemies who had to be on TPN for extended periods of time.  Thankfully her fracture is just in her finger rather than her arm or her leg (which the doctors and nurses see much more frequently). 

Isabelle was treated for an infection last week with five days of antibiotics.  She had a stitch that did not dissolve and wound up causing a pustule on her back at her incision from her PDA ligation.  The pustule thankfully took care of itself and the doctors did not need to intervene (with more than antibiotics).  She is feeling much better now.

On Sunday, Isabelle was transitioned to a high flow nasal cannula at a rate of 3 liters.  She is doing fabulous with the transition and has been at room air for the entire time.  Hopefully we can decease her liters soon.

Isabelle has also decided that she does not want to follow the normal course of development and today she rolled over!  She was on her back and the next thing we knew she was on her belly!!  Talk about an advanced baby!  On Sunday she weighed 1360 grams or 3 pounds.




Zoe has had the roughest time recovering from her eye surgery.  As a result of being intubated, Zoe developed staff auresis pneumonia.  She completed a regiment of antibiotics for ten days.  We had to wait with bated breath however has they ran cultures to determine if Zoe had MRSA - if she did, she would have to be placed in isolation for the remainder of her hospital stay - thankfully, it was just a scare!

Zoe is still on the Ram at a Peep of 3 with fluctuating oxygen levels.  We are hopeful that she will be able to transition to a high flow nasal cannula soon.  They were discussing this step for her before her eye surgery, so we have our fingers crossed.

On a lighter note, Zoe has discovered that she enjoys pooping on her nurses.  For three consecutive days she pooped on three separate nurses!  Everyone was grateful for the poop however so Zoe was able to skate by on her good looks!  On Sunday, Zoe weighed 1320 grams or 2 lbs, 14.6 oz.

Bottles & Boobies

All of the girls have been transitioned to gastric, bolus feedings from continuous feedings directly into their intestines.  This is a huge step towards finally learning how to nurse and take a bottle. 

Zoe and Cecilia are being fed every two hours, while Isabelle is slightly ahead of the group, being fed every three (this timing is more compatible to an actual nursing schedule). 

Milestones

The girls have reached another milestone - the tops of their incubators have been raised.  This is a step that is normally reserved for babies at 1500 grams and above.  Once again, the girls are over achieving.  It is quite a sight to see the tops raised and to know that we no longer need a doctor's order to hold our children! 

Yes, another milestone.  Once the girls dropped before a Peep of 4 on the Ram and transitioned to the high flow nasal cannulas, we no longer need to ask permission (at least from the doctors) to snuggle with our babies.

Lastly, the girls all had their two month vaccinations on Monday.  Four shots - two shots per thigh.  All the girls were troopers and handled their shots much better than I would have!  I was so proud of them!

 

Happy Neonatal Nurses Day!

Sunday, September 15 was Neonatal Nurses Day.  The girls insisted on bringing bagels and cream cheese for the nurses to show their appreciation for all the nurses' hard work.  More importantly, for loving them.  The nurses (most of them anyway) actually care about the girls as they have been at the hospital for 77 days (ok 78 days now as it is Tuesday).  It makes it a little easier to watch the nurses care for them because of who they are rather than just because it is another baby.  This is important to me. 

One Month To Go

My original due date was October 16, 2013, so we have officially reached the one month to go deadline.  Unfortunately we do not believe we will make it home by our due date, but we are hopeful to get home by Thanksgiving.  Ideally, it will be sooner.  However, if I set a date too soon and we don't make it, I might get discouraged. 

Please keep praying for our girls and know we hold you all in our hearts. 

All our Love

Adam & daneille

Happy Grandparents' Day

Sunday, September 8, 2013

Dear Grandma Jamie, Popa Tom, Grandma Jan & Grandpa Mark ~

We are so lucky to have you in our lives as role models, grandparents and friends.  Thank you for always taking time to come and see us...we know it's quite a trip for all of you!

Grandma Jan and Grandpa Mark have been able to watch our slow progression of growth.  Grandma Jan takes lots of wonderful photographs of us ~ this will help Momma document our journey in our scrapbooks. 

Popa Tom came this weekend and could see how much we've grown and changed from our birth.  Grandma Jamie, well she visits us so often that we count our weeks by her ~ we miss her when she goes away. 

There are so many wonderful things you can teach us and we look forward to spending so much more time with you as we get bigger.

Popa Tom will teach us about so many different things ~ We cannot wait to explore your shop.  You will be our favorite napping partner!

Grandma Jamie teaches us songs and to always look on the bright side of life.  She will tell us lots of stories about Momma and Auntie Belle!!

Grandma Jan has a youthful exuberance that will help mold us into happier children.  We cannot wait to go on adventures with you!

Grandpa Mark will teach us about history and the outdoors.  Hopefully at least one of us wants to go hunting with Daddy and you.

We hope you know how blessed we think we are to be loved by you!  And we do not mind sharing you with Gus ~ though he may have different thoughts...

Thank you for loving us!

Happy Grandparents' Day!

Love,

Madison, Cecilia, Isabelle & Zoe

Retinopathy of Prematurity (ROP)

Day of Life 66 ~ Corrected Gestational Age 34 Weeks, 1 Day

The last forty-eight hours has been incredibly difficult, however we have survived them. 

On Wednesday, Zoe underwent laser surgery to treat her ROP eye disease.  The surgeon needed to stop the growth of her abnormal blood vessels.  Surgery required Zoe to leave the unit (taking her first field trip) and be put under anesthesia (which required her to intubated). 

Zoe's disease was progressed to Zone 2, Stage 3, pre-plus.  The laser destroyed all cells from the equator of her eyes (yes both of them) forward - out toward the world.  This means no cells, healthy or diseased, will grow past this point.  The hope is Zoe will be able to maintain "normal" vision with an increased risk for near-sightedness, which will be able to be corrected with glasses.  She also lost some of her peripheral vision. 

Zoe was returned to the unit late Wednesday morning and the surgeon proceeded to examine Isabelle and Cecilia.  The news was not great. 

Both Isabelle and Cecilia were showing the disease in Zone 1, Stage 3, plus disease.  Isabelle would require surgery within 48 hours and Cecilia would need surgery within 24 hours.  Definitely not what I expected to hear, especially after the first eye doctor stated "if he were a betting man, neither of the girls would require intervention."

The girls were scheduled for surgery first thing Thursday morning. 

Cecilia's disease was located furthest back in the eye, creating the most complicated situation for treatment, as a result we were presented with the option of a "quasi-experimental" treatment ~ an injection of medicine directly into the eye ball called avastin.  The avastin treatment is relatively new and comes with an increased risk of death. 

Accordingly our options were: 

A)  Do nothing which would result in retinal detachment and ultimate blindness;
B)  Laser surgery which would eliminate a majority of her blood vessels (good and bad) resulting in what would equate to being legally blind; or
C)  Avastin treatment with its increased risk of death. 

The avastin treatment is an injection into the eye ball which stops the growth of abnormal blood vessels, allowing the healthy vessels a chance to progress forward before the abnormal vessels start growing inward again.  She will require laser surgery in the future to completely eliminate the abnormal blood vessels and prevent retinal detachment.

We have always stated we just wanted Cecilia to have a chance and the avastin treatment gives her her best chance at normalcy.  Please pray for Cecilia.

Cecilia was taken down to surgery at 11 a.m. and returned from the operating room at 1:15 p.m.  She was also intubated.

Isabelle followed going down surgery at 1:45 p.m.  Like both Cecilia and Zoe, Isabelle was placed under anesthesia and intubated.  Isabelle was having laser surgery, like Zoe, but unfortunately, Isabelle's disease was significantly worse than Zoe's.  Isabelle's surgery took over 4 hours but the surgeon stated it was well.  Isabelle will lose more of her peripheral vision, but she should still have "normal" vision correctable with glasses. 

The girls all have severe eye disease but thankfully the surgeon believes that none of the girls' central vision (ability to see forward, read, etc.) was affected.  Not progressing to Stage 4 of the disease was very important.

The girls are currently all intubated, meaning I can no longer hear them cry.  It feels like a step backwards, however in the NICU this is unfortunately par for the course.  Sometimes you need to go backwards in order to go forward. 

Please keep praying for our girls and please help us find the strength to endure all the pain the girls must be feeling. 

Love Always,

Adam & daneille

Happy Birthday Daddy!

September 1, 2013

Well once again it is in the early hours of a day and while the rest of you are sleeping, I am up waiting to pump.  Today is Adam's birthday!  I am saddened that we cannot be together to celebrate but hopefully we will be together next year. 

It also happens to be the girls' 2-month birthday.  So much has happened in the past two months that it is simply unbelievable. 

KILO PARTY!

All of the girls have finally surpassed the one kilo mark ~ which according to the doctors is a big deal.  This means all of the girls are over the two pound hump as well.  Hopefully they can keep growing bigger and stronger because we cannot go home until they at least double their weights. 

I keep pumping and currently I am averaging 50 ounces of a milk a day.  I was told by lactation specialist that the girls will eat any where from 60 to 90 ounces a day combined total...this is A LOT of milk to pump!! 

We currently filled our deep freeze and half of our regular freezer with milk.  Amy took back three coolers of milk to put in her deep freeze for us until the girls come home.  On top of that, I have over half the freezer filled at the Ronald McDonald house and a freezer filled at the hospital.  And yesterday Adam had to go purchase a new, larger deep freeze for us to store milk in...I hope the girls are hungry and keep eating! 








Miss Cecilia has been doing her part and has a current weight of 1040 grams...Drum roll...this is double her birth weight!!  She was even made a special sign for near her isolette to celebrate this historic milestone! 

Cecilia still has spells and unfortunately requires assistance (usually bagging) 3-4 times a week.  These episodes are quite scary for everyone involved.  Hopefully she will grow out of this and master the skill of breathing soon.

She thankfully has begun to have output from her ostame.  We, strangely, had a small period where the doctors were worried she was pooping too much, however it appears this has passed.  The doctors are now talking about the possibility of revision (rerouting her poop from the stoma back through her mucus fistula so it exits her body through the colon).  This will allow Cecilia the best chance of having normal bowels moving forward.

Isabelle, our monster baby, is doing quite well.  Her current weight is 1230 grams and she looks it!  It is incredible to look at Cecilia and then to go and look at Isabelle ~ it gives us hope that Cecilia will catch up one day. 

Iz also has this amazing fuzzy hair which you cannot help but smile at ~ She likes to play games with the nurses too!  She'll start desating and then when the nurses come over to check on her, she'll look up at them and smile and raise her saturation levels to the "happy zone."  It is incredibly cute!  Speaking of her oxygen, Iz is getting closer and closer to leaving CPAP and earning herself a high-flow nasal cannula.  This also brings her one step closer to learning how to nurse...

Zoe is also racing her way towards losing her CPAP, graduating to the high-flow.  While we are optimistic, we know not to over celebrate as this step could take weeks yet.

Additionally, poor Zoe has decided that she did not want to miss out of the procedure bandwagon and will need to undergo surgery for ROP this week, more than likely on Wednesday.  The laser surgery will involve Zoe being re-intubated, taken downstairs (off the unit) to surgery, and being put to sleep.  The surgery will last anywhere from 2 - 5 hours we've been told.  Please keep your fingers crossed for Zoe. 

Zoe has been having the hardest time gaining and keeping her weight.  Currently she weighs 1050 grams (which is only 10 grams more than Cecilia).  The doctors are working on this for her and hopefully we can get it figured out soon. 

The start of September brings additional changes for the girls as we will need to get used to new residents again.  This can be a very frustrating part of having the girls at a teaching hospital...thankfully however we will get Mark, the fellow, back this month.  Mark has a favorite triplet and is not afraid to let us know ~ Mark placed Zoe's breathing tube at her birth. 

We also get to keep our same group of nurses (for the most part) who know and love our girls.  Sadly, one of our favorite nurses, Cecilia (no I am not kidding), left Mayo to take a position as a traveling nurse ~ we wish her well and hope she follows up on the girls.  While we lost Cecilia, we have kept Miss Patty  : )  If I could figure out a way to either steal Patty away from Mayo or clone her to come take care of the girls, Adam and I would be set for life!  Patty is an element of sanity for Adam and I.

We have borrowed Nemo's mantra of "Just keep swimming" and hopefully we can not only survive this journey but we can thrive and grow.  While it may be easy to start feeling down or sorry for ourselves, we have to remember ~ we are incredibly blessed to be in this position because it means our girls are still here ~ still here, fighting and growing and letting us fall more in love with them daily. 

Thank you every one for your thoughts, prayers and words of encouragement.  Many of you have asked what you can do to help us, however right now we simply need you to continue praying for the girls.  Once we come home and actually start our lives together as a family we will have a better idea of what will be helpful (meals, cleaning, snuggling, etc.). 

Also, please know that I apologize if you have sent a gift or a card and I have been unable to get back to you.  We are more than appreciative of your thoughtfulness. 

All our love,

Adam & daneille