February 9, 2008 – The phone rings

Jenn-Jen and I really had a difficult time sleeping last night.  I usually can fall asleep anytime and anywhere I choose, but last night was one of those nights when my brain decided to keep the open sign on.  At 3:00 AM, I woke up concerned why the heater didn’t turn on and imagined Adam shivering in bed.  I don’t know how long I lay there thinking how cold it really feels outside of the blanket and finally decided to get out of bed to check the thermostat.  It was pitch dark, so I scrounged around for a flashlight in Jenn-Jen’s nightstand drawer.  All of a sudden I was startled when Jenn-Jen exclaimed “Out Phoebe!”  Phoebe is our old and faithful feline furball we found abandoned nearly eleven years ago.  She’s still spunky, talks back when you scold her, and often makes attempts to jump onto our bed, which will typically earn her a strict dose of discipline.  So in the darkness of our bedroom, Jenn-Jen mistook me for our twelve pound cat.  I’m just glad that she didn’t think I was some prowler and take action to incapacitate me.  When we realized how silly the situation really was, we laughed together in bed and ended up keeping ourselves up even longer.

It took what seemed like eternity to fall back asleep, but it did eventually happen.  Before we could settle into a deep slumber, Jenn-Jen’s cell phone rang at 6:30 AM.  I listened in closely  as my wife spoke with the nurse about Daria’s condition.  Apparently, during the night, Daria’s blood pressure had dropped to a concerning level and the doctor on call made the decision to administer the drug, Dobutamine (http://en.wikipedia.org/wiki/Dobutamine).  This medicine is used to prevent heart failure, and in Daria’s case, to specifically bolster her blood pressure to an acceptable level.  The nurse would continue to watch Daria in the hopes that the medication could be weaned over time.  Unfortunately, they did have to start a separate peripheral intravenous (IV) line, as the continuous drip would not do well with the central Broviac line in case a blood gas needs to be drawn.  The nature of the drug being used provided us with a bit of a scare, but the nurse assured us that Daria was stable.  As you can imagine, it was impossible to go back to sleep after receiving this unexpected change. 

As the nurse explained, Daria’s recent placement of her Broviac line required the use of pain medication, and our daughter may have been affected by the drugs.  There is a balance between using sedatives like Fentanyl, which will often decrease blood pressure, to reduce pain, and medications like Dobutamine to raise the pressure.  Over the course of the day, they worked towards weaning her off the latter.  She is still on the medication, but our hope is that by morning time, Daria will be back to her normal self.  Then her breast milk feedings can resume.

Katelynn is doing remarkably well, and all of her vitals are looking very positive.  The doctor ordered an increase in her feedings to two milliliters of milk every hour.  We are a little concerned about her abdomen looking a little bloated or distended, but the nurses tell us that she just may have a little gas in there.  We hope and pray for more good news, especially as we approach the next head ultrasounds.

Adam has the opportunity to spend some time with my family during the day.  Nonetheless, I am still feeling very exhausted.  It is 11:00 PM now and I am glad I didn’t return to the hospital feeling so tired.  Rest, rest and more rest is key right now.  I just need to shut off my brain, if only until the morning.

February 8, 2008 – Butterflies

We were hoping to get Katelynn and Daria closer to each other, but the RSV outbreak several days ago put a temporary halt on that front yesterday.  Katelynn and most of the other babies in Room A were relocated to a different room while the NICU performed a thorough scrub down of the affected area.  I still worry about the nasty virus being transmitted around the nursery, but the nurses I spoke with tell me that I should ease my mind, as they take every precaution to minimize the spread of infection.  The room clean up is another standard protocol to keep everyone healthy, so I am giving it my best attempts to not liken it to one of those hazardous material spills you see in the news or movies.  I just hope that they will be able to move my daughters near each other within the next few days.

 Jenn-Jen and I are beginning to get into the routine of paying a visit together to the twins in the morning and returning home by mid-afternoon to allow my wife some much-needed rest.  I return to the hospital, usually after dinner, to spend some time with the girls and talk with the nurses about any important changes that may have occurred in the interim.  Time just seems to disappear right before my eyes as another day comes to an end.  As I have been warned that Katelynn and Daria’s condition can change often, I have asked for at least another week off from work.  This will allow for the girls to continue to stabilize and develop, and Jenn-Jen to heal and regain her strength.  While I look forward to the day I can say that we are comfortably secure in the twins’ health, I confess that it will be difficult for me to not be at the sides of their incubators as often as I am now.  All parents worry about their children, and I am no different. 

I love my family with all my heart and soul, and wish I could take any of their pain and suffering instead.  Every time I see Katelynn and Daria working so hard to survive and develop, it feels like a wound reopening within me.  Still, in a quiet time alone during my drive home from the hospital tonight, I remember learning about how caterpillars develop into butterflies.  As caterpillars grow from their larval stage, they undergo a process of metamorphosis, first into pupae, and finally into their mature form as butterflies.  If you have ever seen the process as the butterfly is emerging from its cocoon, you can attest to how much effort is involved.  You cannot help but to want to help the poor creature break out so it can begin its new life.  The irony is that all of what appears to be suffering involved in emerging from the pupal stage is crucial to the butterfly’s future survival.  If you open the cocoon and not allow the insect to fight and come out on its own, the butterfly will not properly develop its wings and will spend its life flightless and vulnerable.  I envision my Katelynn and Daria as beautiful butterflies, and am telling myself each day to not to be so caught up in their struggle to emerge out of the cocoon I have come know as the NICU. 

The big news today is that Daria had her Broviac line put in this afternoon by our pediatric surgeon.  By the time I returned to the hospital, Daria was already resting with the aid of morphine and Pavulon (http://www.organon.com/products/anesthesia/pavulon.asp), a muscle relaxant that provides a short, but necessary duration of paralysis.  As the nurse explained that Daria would pretty much be “zonked out” for the rest of the evening, I smiled to myself and felt at peace in knowing that my angel would be sleeping comfortably.  Both girls now have their umbilical arterial catheters (UAC), or IV lines, removed and we are one step closer to being able to hold both of them.   I tell myself not to be nervous, but they are still so small. 

Katelynn is doing very well today.  They have increased her feedings to 1.5 milliliters of milk each hour and, in return, she is not holding back on the frequency of her pooping and peeing.  Jenn-Jen had the honors of doing a diaper change today for Katelynn after she produced a good sized stool, as I was too chicken to lay my clumsy hands on my tiny, but very soiled angel.  Don’t get me wrong, I have no hesitations when it comes to wiping rear ends, especially the ones attached to my children.  Right now, I just don’t trust my hands to be steady enough for such a big task on such a small butt.  Otherwise, everything else looks status quo with Katelynn.  I especially enjoyed my evening visit with her, as she was awake most of the time and a little more active, now that the effects of the Pavulon from her Broviac line placement are beginning to wear off. 

We remain hopeful and pray in anticipation for both girls’ head ultrasounds on Monday.  Nonetheless, the long-term effects of brain hemorrhaging is still such an unknown and we know that we may have a very challenging journey ahead.  The threat of learning disabilities and cerebral palsy haunts me still, but I am making it a mission to educate myself and not be paralyzed by ignorance of the potential future of my daughters’ development.  I am amazed, intrigued and inspired by a story of Dallas Hextell, a toddler that lives here locally in Sacramento who is afflicted by severe cerebral palsy, and a breakthrough treatment using stem cells harvested from his umbilical cord blood (http://cbs13.com/local/Sacramento.Stem.Cell.2.592882.html).  The results of the experimental procedure done at Duke University is truly remarkable, and I encourage you to watch the video in the link for yourself.  I am going to speak with our neonatologist about this tomorrow, but I fear, as promising as the results were for Dallas, we may be too late to have this as an option should we come to a point where we may want to exercise it.  The thought of storing cord blood honestly never crossed my mind in the past, but I will do more research on this and try to learn as much as possible.  Whatever the outcome may be, I continue to hold firmly onto my faith in the Lord and feel His comforting presence more each day.  The following scripture is my continuing prayer:

But those who hope in the Lord will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Isaiah 40:31 New International Version