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