February 18, 2008 – Three weeks of life, twenty eight weeks gestation

Rain is coming through Sacramento beginning tomorrow and is expected to continue through next week.  Between the weather systems will be periods of calm and sunshine, which always bring refreshing, crisp air.  In many ways, Katelynn and Daria’s lives have been similar to our weather, unpredictable and ever changing.  We have braced ourselves through rough emotional storms and basked in the warmth of developmental milestones reached.  Just as we begin to feel safe and secure in the calm, the unexpected torrent of bad news seems to wash away all the progress built.  Still, the girls fight on, and before we know it, the storm clouds vanish and the sun returns. 

We are now three weeks into Katelynn and Daria’s lives, yet they are developmentally still at twenty eight weeks gestation.  A normal pregnancy would last forty weeks, and we would have been thrilled to have reached thirty two, the same gestation as when our son Adam was born.  Jenn-Jen and I were talking this morning when she pointed out that Adam stayed in the same NICU for three weeks before he was allowed to come home.  Back then, those three weeks felt unbearably long, but these past three have passed by so quickly before our eyes.   It will still be some time before we can bring the girls home and we are trying hard not to be anxious.

I am pleased to report my sore throat last night did not return this morning, and no other cold symptoms have surfaced either.  As a precaution, I am continuing my daily regimen of Airborne and Sambucol, a remedy that uses black elderberry extract to provide immune system support.  Honestly, I can’t testify to the true effectiveness of either, but am willing to use them to keep myself cold-free. 

Jenn-Jen is recovering from her cold and we hope that she will be able to see the girls tomorrow.  It is agonizing to be away from the girls, and my wife looks forward to seeing their little faces as soon as she possibly can.  We just hope this isn’t one of those lingering colds that keeps you miserable for weeks.

I walked into the Special Care Nursery, or NICU, tonight and was completely surprised to find Katelynn off the bubble CPAP!  She is now breathing with a little help from a nasal cannula system, as she was before her last surgery.  It is amazing how much of a psychological boost I felt being able to see Katelynn’s entire head, even with her incision scar and VAD  on her scalp.  She was very alert tonight and even shared a couple of quick cries, almost as a way to remind me of her sweet little voice. 

One remaining concern with Katelynn is her distended belly.  The bloating looks a bit concerning and the doctor decided to keep her nil per os (NPO), which means she is no longer receiving breast milk feedings.  They did restart her on TPN and lipids again until the swelling subsides.  The evening nurse tells me that Katelynn has been producing stools and is receiving suppositories every six hours.  He also mentioned there’s a chance the distension might be from all of the air that is pushed in through the bubble CPAP, so hopefully that will not be an issue any longer.

The dome under Katelynn’s scalp looks quite pronounced, but I am so grateful it is there to allow the neonatologist to draw out cerebrospinal fluid (CSF) and any blood that may be in her brain ventricles.  They took out five milliliters yesterday and eight today to keep the swelling down.  As Katelynn’s brain reproduces CSF each day, I am hoping the use of the VAD will be sufficient to keep the pressure down.  Otherwise, the next step for Katelynn will be to have her VAD converted to a full ventricular shunt, which is more involved with tubing that drains excess fluid into her abdomen.  The combination of having eight milliliters of CSF drawn out and going NPO on the feedings has resulted in a decrease of forty grams in Katelynn’s weight today.  She is now coming in at one pound, twelve ounces, or eight hundred grams.

Daria remains in a calm and sleepy state most of the day.  Her respiratory system definitely is not as strong as her sister’s yet, as she is still on the bubble CPAP with higher oxygen settings.  This morning I witnessed a few desaturations, but she has been quiet in the evening so far.  Hopefully she will keep those lungs growing strong so she can progress to the nasal cannula, which looks so much more comfortable.

Our little Daria is now taking in five milliliters of milk every hour, which is fantastic.  There are no signs of her having any digestion issues and Jenn-Jen’s supply is increasing each day.  While we have an oversupply of milk right now, there will come a day when the girls will need a lot more to satisfy their hunger.  We look forward so much to get to that point, but the idea of breastfeeding twins is challenging.  Nonetheless, Daria is up ten grams today to eight hundred thirty, or one pound and thirteen ounces.

As Daria has been sleeping most of the evening, I still have not heard her voice yet.  It is completely fine with me, as I would much rather have my Jenn-Jen present with me to hear our daughter together.  Hopefully, tomorrow will be the day.