February 2, 2008 – I need to pace myself

After a long night at the NICU that stretched into the early morning hours, I came home to the warmth of my home and the comfort knowing the Jenn-Jen and Adam were in warm beds.  I wish that the twins would have the opportunity to come home, away from the harsh and sterile hospital environment that they will have to endure for some time.  I wanted so badly to just exhale and slip into unconsciousness, but the ever-vigilant part of my soul reminded me that in an instant, the situation with one or both of the twins can change quickly.  I dread the thought that I may receive an urgent phone call to summon me to the hospital, but this is my reality for now.

The day’s update has been, thankfully, rather uneventful.  Daria continues to be fairly stable, but Jenn-Jen and I were with her when she experienced a “desat,” where her oxygen saturation levels decreased to an unhealthy level.  When vital sign thresholds are reached, bells and flashing lights begin to go off.  For us parents, the first experience of this is very unnerving.  Even after going through these alarms so many times now with both girls, it is disconcerting to feel the anxiety of knowing that your child needs someone to come over quickly and adjust the ventilator so she can breathe properly.  Why is that I feel that nobody else is in a rush to get my daughter’s vital signs back up to where they should be?  I know that I am just being overly worried, as the nurses are completely aware, but it still gets me on the edge of my seat.

Katelynn had as good a day as we can hope for at this stage.  Her IVH, or brain hemorrhage, is most likely going to lead to hydrocephalus (http://www.emedicine.com/neuro/topic161.htm), which is a dangerous condition resulting in increased pressure in the brain ventricles.  The doctor informed us yesterday that this may require a surgical procedure called a ventricular shunt (http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/ventricular_shunt.jsp) to be performed.  Essentially, the shunt (VS) is a tube that is inserted into the brain to drain out excessive cerbrospinal fluid and blood that has accumulated.  It scares me to think of this procedure, but if it isn’t done, Katelynn’s life may be in jeopardy.  I am so pained to reflect back on everything her fragile body has endured throughout her short life, but I am also hopeful that she can pull through.

After talking it out with Jenn-Jen, I decided that my body was telling me that exhaustion is fast approaching, and it would be wise to stay home for the night.  I hate being away, but if we end up getting sick, the NICU will not allow us entry.  There are too many premature babies like ours with weak immune systems that can be devastated by even a common cold.  So, as I am trying my hardest to do what is right, we agreed that it would be best for me to turn in early tonight.  I’ll have more information tomorrow, but for now, the bed calls.

February 1, 2008 – One hospital stay comes to an end, two continue on

One of the doctors that works closely with Jenn-Jen’s came by the room this morning to see if we wanted to be discharged today.  He was willing to try to pull another night for my wife, as being discharged means it will be less convenient to see Katelynn and Daria.  Although it wasn’t an easy decision, we promised Adam that mommy was coming home on Friday, and Jenn-Jen was looking forward to the familiar comfort of home.  Time almost seemed to have slowed and expanded during the past fourteen days since Jenn-Jen was admitted to Sutter Memorial Hospital.  Before the kind doctor left, he sat down close and said to my wife, “No matter what the outcome, just know that you did the best that you could.”  His words gave us a sense of reassurance and only a day or so ago, I heard Jenn-Jen say that she tried to do her very best.  I confess I have been been battling the demons of guilt, and played many “what if I had done things differently” scenarios in my mind.  I think every person, and especially parents, torture themselves with similar thoughts when catastrophe strikes.  All in all, it was reassuring to hear someone tell us to banish thoughts of self-blame and guilt.

We spent the day visiting our daughters and talking with our neonatal physician about any recent changes.  Let me start with Daria, as I am pleased to report that her last head ultrasound shows that the hemorrhage, or IVH, is at a grade 1.  This means that there is a good chance that the bleeding will stop on its own, yet there are no guarantees that it won’t worsen.  Daria’s ventilator settings have also come down a bit in the morning and afternoon, so it seems that she is fighting hard and strong to develop.  Unfortunately, when I came back to the hospital at 10:30 PM, her oxygen saturation level did come down, meaning that they had to up the ventilator settings a little to help her breathe.  The murmur, or PDA, situation remains in a holding pattern, as the doctor will not want to intervene so as long as the condition doesn’t cause Daria’s vital signs (mainly her blood pressure) to destabilize.  While I certainly pray that she doesn’t have to have heart surgery while she is so fragile, the more I learn about how common it is to have the procedure to correct the murmur, the more I trust that this isn’t as alarming as it may seem.  Strange, isn’t it to say that heart surgery for my baby that was born fifteen weeks too early isn’t necessarily a crisis?

As for big sister, I may not have written that Katelynn was put on a jet ventilator (http://en.wikipedia.org/wiki/Jet_ventilation) yesterday to help her respiratory system.  The jet ventilator differs from normal ventilators as it produces very small puffs of air at the rate of 420 per second.  These high frequency puffs are used to help reduce trauma to the lungs, as regular ventilators essentially “take deeper breaths” for the patient, creating more expansion.  While I know this is very helpful for Katelynn, it was painful to see her chest vibrating and know that she needed to be treated with sedatives during treatment.  Nonetheless, we were pleased to see that, for the time being, it was no longer necessary to use the jet. 

Since receiving the heart-breaking news about Katelynn’s brain hemorrhage yesterday, Jenn-Jen and I came to terms that a “normal” life for our precious daughter may never be a reality.  What we set out to find today was what we may expect in terms of quality of life for Katelynn, should she survive her fight to stay alive.  While we did not go in with our hopes set high, I intended to get a better sense of longer term brain function.  The doctor showed us the ultrasounds that documented the progression of Katelynn’s IVH from a grade 2 to 3 to 4 over the course of the past few days.  Blood has not only entered the ventricles in her brain, but caused them to become distended or expanded.  As it was explained to us, this almost inevitably causes irreversible brain injury that usually results in cerebral palsy and severe learning disorder. 

I really wanted to know if there is a strong likelihood that Katelynn may end up living out her life in a comatose-like condition where she may never have the ability to build a relationship with me or Jenn-Jen.  If this brain damage creates such a low-functioning mental state for her, the question arises on whether it is less cruel to allow her to pass on.  Katelynn’s doctor would not take a firm stance on this, as I expected, but he did say that this worst-case scenario I presented is not necessarily likely.  So I asked him to provide me with some examples of former patients that survived a grade 4 IVH to get a better understanding of the range of possible outcomes.  He basically said that it ranged from mild cerebral palsy to severe cases where seizures, mental retardation and a lifetime as a quadriplegic was evident.  

As saddening as it may be, the information helped Jenn-Jen and me come closer to making a decision.  I am seeking guidance through God’s word on what is best in this situation.  Is it right to make all attempts at saving Katelynn’s life, no matter what her quality of life may be?  I can’t seem to find any clear-cut answer, but I am feeling more and more conviction that we must give her a fighting chance. 

I would like to share with you a story that moved me to tears even before the twins were conceived.  It is the story of Dick Hoyt and the amazing love he has for his son, Rick,  who was born quadriplegic with severe cerebral palsy and is unable to speak.  You can find out more by following this link (www.teamhoyt.com) to their website, and I strongly urge you to watch these two video clips in order: (http://www.youtube.com/watch?v=flRvsO8m_KI) and (http://www.youtube.com/watch?v=rPLCaAu_H2U).  When I saw their story back then, I actually told myself that I hope that one day I could be as loving a father as Dick Hoyt.  Little did I know that I may really be put to the test.   Please share your thoughts with me after you watch the videos and honestly tell me if you stand behind how I feel.  As a father, I would do anything for my family, the least of which is to give them a chance to live to their highest potential. 

As I am sitting here alone outside the NICU at 12:57 AM on February 2nd, and my heart is in a million pieces for my daughters,  I am preparing to head home to Jenn-Jen and Adam.  It seems that I have cried for an eternity, but I am comforted in knowing that God understands.  I would like to close out this post by sharing this scripture that is giving me some sense of peace this morning:

I waited patiently for the Lord; he turned to me and heard my cry.

Psalm 40:1 New International Version