Day of Life 37 ~ Adjusted Age 30 Weeks

Every Day Is A Blessing

 

 

Please forgive us as we have been delinquent in updating you on the girls.  My days are spent at the hospital afraid to leave for fear something may happen to one of the girls.  And unfortunately this is a realistic fear, as on more than one occasion something has happened to one of them while we were out either pumping or eating. 

 

The girls celebrated their one month birthdays last Thursday and instead of having fancy one month photos taken the girls were in the hospital.  Upon request the night nurses helped me out and took photos of the girls for me so we will be able to look back and see just how small they really are. 

 

 

Monday the girls were 5 weeks old.  Can you believe it?  They have already graced this world with their presence for five weeks.  And today, I would have been 30 weeks pregnant.  According to the website the girls should have been the size of cucumbers now and finally getting the strength to grip a finger.  Well, hate to disappoint the website, but the girls had the strength to grip fingers from their first hours outside of my womb.  They are so incredibly strong. 

 

Here is a quick update on how each girl's journey has progressed:
 

Cecilia Hope

Cecilia has definitely had the roughest road of all the girls.  However, she is probably the strongest of us all.  I hope their is a lot of Cecilia in me, as she simply faces each new obstacle with grace, bravery and strength. 

 

The girls undergo quite a few XRAYS.  One of Cecilia's XRAYS showed a large pocket of air accumulating in her right lung.  This pocket of air was impending her ability to breathe properly.  She had developed a pneumatocele and the fear was it would literally pop instead of her.  As a result, Cecilia needed surgery.

 

Dr. Ishatani (a fabulous man with a different sense of humor) examined her and her XRAYS, and despite Cecilia weighing only 540 grams at the time, agreed to perform the surgery.  The surgery to pop/drain the pneumatocele was incredibly risky and more than once we were told Cecilia might die on the operating table.  Having a baby leave the NICU for surgery is always risky, however, the general feel was that Adam and I needed to say good bye to our little girl. 

 

On Day of Life 15 our little Cecilia underwent her first surgery.  The trip to the operating room was scary and neither Adam nor I was prepared for how much it would hurt to see Cecilia wheeled through the double swinging doors and not know if she would be coming back. 

 

Thankfully Dr. Ishatani is really good at what he does and Cecilia is incredibly strong with a desire to prove the doubters wrong.  Cecilia made it out of surgery, the pneumatocele is gone and her lungs are doing much better.

 

You would think this should have been enough for one little girl to go through, but unfortunately this was just the beginning. 

 

Babies in the NICU are constantly needed different lines and access points to either give or receive blood.  One of these lines is called a PICC line, which are usually very reliable and sturdy.  Unfortunately for Cecilia, her PICC line broke in her arm and the nurses needed to remove it quickly.  In the course of removing her PICC line, the tape that held the line in place inadvertently stuck with the end result of amputating the top knuckle of Cecilia's left pinky finger. 

 

The nursing staff was devastated (another time when Adam and I stepped out to pump and walked in find chaos around one of our daughters).  Thankfully they were able to find the removed portion of her finger.  Plastics was contacted and her finger tip was reattached, however we have no idea if the surgery will be successful.  We have to wait and see if the finger is able to actually reattach itself or if she will lose it permanently.  Please say your prayers for her.

 

Finally, as if that all wasn't enough, there is Cecilia's tummy.  From day one Cecilia's belly looked "different."  It was a darker shade than the rest of her body, looked distended and was often firmer to the touch than it should have been.

 

Cecilia was required to leave the NICU on two separate occasions to undergo lower GI studies to see how her bowels were doing.  Unfortunately, we found out that the contrast used in the study could not enter the small intestine indicating that there may be a stricture, or blockage.  An upper study was conducted (this time the doctor came to the NICU) and again no results were found. 

 

After 30 days of "waiting and seeing" if the tummy issues would resolve themselves, Dr. Ishatani stated he could wait no more and she needed immediate surgery.  Poor Adam was at work and had to rush back to the hospital to be with us as again, the surgery was extremely risky with the odds of survival being less than 50%. 

 

Dr. Ishatani ended up having to remove 15 cm of Cecilia's small intestine, leaving her with 32 cm of healthy tissue.  She has the entirety of her colon intact.  As a result, Cecilia has an stoma ~ She had an ostomy (surgery) to create an opening (stoma) from an area inside the body to the outside.  At approximately 1900 grams she will need to undergo another surgery to put her back together again. 

 

Today Cecilia weighs 670 grams and has never been fed.  She also remains intubated to breathe.  On Saturday, 33 days after her birth, I was able to hold her for the first time. 

 

Cecilia is incredibly strong, seems to roll with the punches and is an inspiration to us to never give up.  
 

Isabelle Grace

Isabelle started off leading the pack but has had some major set backs. 

 

Isabelle was the first girl to get extubated (have her breathing tube removed) and placed on CPAP.  She did really well on CPAP for 5 days.  At the end of Day 5 she started having difficulties and was reintubated.  At first the doctors relayed this to her CPAP simply not fitting correctly and her having to work too hard to stay on it. 

 

We tried extubated her again but this time she only lasted 3 hours.  She became lethargic and listless.  At first everyone thought it was from the drama of having her breathing tube put back in, taken out and put back in again in less than 15 hours.  Unfortunately this was not the case. 

 

Isabelle was experiencing kidney failure and lung difficulties.  Multiple tests and XRAYS were performed and Isabelle was diagnosed with necrotizing enterocolitis (NEC).  NEC is a very serious condition as it results in the death of gastrointestinal tissue.  Only 5-10% of premature babies will develop this condition. 

 

Thankfully Isabelle responded well to treatment and was soon her old spunky self. 

 

I would love to say this was the end of her problems, but unfortunately it is not.  Isabelle started running a fever a few days after completing her treatment for NEC.  Blood cultures revealed Isabelle had contracted a blood infection (staff).  As a result, Isabelle needed to have a spinal tap done to test her spinal fluid for meningitis.  Thankfully, the test was negative and Isabelle did not have meningitis and we just needed to treat her blood infection.

 

If you were hoping this was it, you were wrong.  Isabelle developed a Patent Ductus Arteriosus (PDA).  A PDA is a congenital heart condition in which the ductus, a small opening or pathway between the pulmonary and aortic valves, remains open/fails to close after birth.  Sometimes the PDA can be closed medically with a course of medicine, sometimes not.  In Isabelle's case, sometimes not. 

 

Isabelle required surgery to close her PDA, as it was interfering with her ability to advance in all areas of growth and development.  She had surgery on Monday to ligate the PDA.  She is now doing well and we are hopeful she will be able to move forward. 

 

As of tonight, Isabelle weighs 870 grams.  She loves to snuggle and does not like to be too hot (thank you Adam).  She also has the an incredible amount of hair!
 

Zoe Elizabeth

Zoe is probably our most stubborn child.  She started out with a PDA problem but through medication we seems to have resolved her issues.  Thankfully, at this time, she does not have to undergo surgery to ligate her PDA. 

 

Zoe is currently on CPAP and has a love/hate relationship with it.  She wants it out and really is quite clever in removing it herself, even though with it out she cannot breathe.  And she absolutely loves her pacifier!   

 

She is very social and loves to have people talking to her.  She perks up when she hears our voices however she gets frustrated if she thinks someone else is getting more attention.  Because she is on CPAP we can actually hear her cry, which is the most beautiful sound in the world (when she is not in pain). 

 

At this time, Zoe has not had to undergo a single procedure or surgery (knock on keyboard).  She did however contract an infection last week and needed to go on antibiotics.  Due to both Cecilia and Isabelle having GI issues, the doctors are extremely cautious with Zoe's belly and she was recently watched for signs of a perforated colon.  Thankfully, it turns out, she simply needed to poop! 

 

As of today, Zoe weighs 730 grams and is the only girl who is up to full feeds (and she LOVES to eat).  Zoe also enjoys cuddling and will pitch an audible fit when you go to remove her from either Adam or I. 
 

A very long journey...

We've made it five weeks on this journey however there is still an incredibly long road ahead of us.  The girls are projected to remain in the NICU for at least 10 more weeks (give or take 2 weeks on either side).  We are hopeful for less time but are anticipating more. 

 

As parents it breaks our hears to not be able to hold them whenever we want to, to have them enduring so much pain already in life, and to be separated from them and each other.  We are grateful to the doctors and nurses who are working so diligently to protect and treat our daughters.  We are also blessed to have such wonderful friends and family to support us and love our girls. 

 

Thank you for holding our family in your hearts and prayers. 

 

Love Always,

 

Adam & daneille