February 5, 2008 – The choice to become a parent: selfish or selfless?

Last night, over the dinner table, Jenn-Jen and I talked about why we choose to be parents.  I started off the conversation by declaring that the choice to become a parent is a selfless act, but my wife quickly corrected me.  She explained in her opinion, the initial choice to become a parent is actually a very selfish act, but that same choice transforms into selflessness by accepting your child however God gives him or her to you.  That made a lot of sense, as there are many out there that would say the potential complications and challenges Jenn-Jen and I face in bringing up very premature babies is an undue burden.  Some have openly questioned if we really want to put ourselves through such a hardship, and feel that we deserve better.  Jenn-Jen and I certainly do not know what degree of challenges we face in the future, we also do not have the mentality of shirking away from responsibility when the situation we are given does not match up with our original expectations. 

A few days ago, we were asked by our neonatologist to consider if continuing life support for Katelynn is what we wanted to do.  You may have read about my struggles with this sensitive issue, and you may have read that Jenn-Jen and I came to the conclusion that we will do everything we can to allow Katelynn to live a life to her fullest potential.  I appreciate the support and encouragement many of you have offered in standing behind us, and respect, but just do not understand those on the other side of the table.  Given all of the facts of our Katelynn’s condition, I am of the belief that there is really no choice to discuss or make in this matter, and to remove life support would be a completely selfish act on our behalf.  It saddens me to think that parents would end a life because of the potential burden and hardships they may face in bringing up a disabled child.  To me, that is the same as saying to any one of my family members, “Should you face some sort of disability that makes things inconvenient for me, I’ll just have to let you go because it’s just not worth the trouble.”  Please help me understand if I am missing something here.

You may wonder why I am spending so much time writing about an issue that was, in all practicality, closed.  As I have shared with you in my previous posts, the condition of a very premature baby changes quickly, often by the hour.  Jenn-Jen and I came to the hospital this morning in good spirits, as yesterday’s events came out very positive.  We experienced a bit of a shock to find that Daria’s IV site had moved to her scalp.  The nurse did explain that this occurred because they were unable to find a more suitable site on Daria’s extremities, and there is nothing to worry about.  It took a little time to adjust to how strange the new IV looks, but we knew that this is temporary, as a Broviac line will be put in soon.

We visited with our daughters for some time before our neonatologist came in to tell us that all seems to be going well.  Katelynn would start receiving feedings of breast milk at the rate of one milliliter every three hours and Daria would have hers increased to two milliliters every three.  I asked the doctor to check if the results from Daria’s head ultrasound had come in and he said that he would go check.  We went back and spent some more time with each of the girls before I came back out to talk to the physician.

Did I say that things change quickly?  Unfortunately, we learned that Daria’s initial grade 1 IVH, or brain hemorrhage, has taken an unwanted turn for the worst.  When she had her ultrasound done back on February 3rd, we were relieved to learn that the bleeding was very minimal and had hopes that it would cease completely by the next scan.  When the neonatologist returned to report that we were now seeing bleeding in the grade 2 to grade 3 range, we felt yet another crushing blow to our spirit, already bruised and battered from all of the emotional trauma these past eight days.  Yes, I completely understand that things may not worsen for Daria, but I am becoming more and more cautious to set my hopes up only to be toppled by surprising events like this.

To complicate matters, we received a phone call from the NICU and learned that Daria’s heart echo came back with indication that the size of her patent ductus arteriosus (PDA), or heart murmur, is large enough to require treatment.  Even as late as yesterday evening, we had anticipated the possibility this may happen, but were under the impression that intravenous Ibuprofen would be the remedy.  As it is with Katelynn’s situation, the progression of the IVH to a grade 2 or 3 precludes the use of the medicine, as it may thin our daughter’s blood and create a life-threatening situation.  Unfortunately, this means Daria will be undergoing the same surgical ligation operation her sister experienced only yesterday.  The same pediatric surgeon will be performing the procedure, so we feel reassured that his experience will guide Daria to a speedy recovery.  The surgery is scheduled for 11:30 AM, so if you happen to read through this post before then, we would highly value your prayers.

As I have been drafting portions of this post as they unfold, I am beginning to feel overwhelmed by the new developments through the day.  This afternoon, we discovered that Room A of the NICU had an outbreak of the respiratory syncytial virus, or RSV, (http://www.cdc.gov/ncidod/dvrd/revb/respiratory/rsvfeat.htm).  Our Katelynn is in that same room, and RSV is highly contagious and symptoms tend not to appear in infected individuals days after contraction.  As a precautionary measure, the neonatologist ordered all high-risk infants in the entire NICU to be given a shot of Synagis (http://www.synagis.com/), the FDA-approved drug to help prevent infection.  Thankfully, under hospital protocol, the affected baby was relocated to Pediatrics, where I imagine he will be quarantined so isolate the virus.  So, to top off a full day, Katelynn and Daria received Synagis injections.  Now we wait the eight days to monitor for additional RSV outbreaks before the all-clear is given.  We were hoping that our daughters would be moved to the same room, but with this unfortunate event, they will double in age before that may happen.

I am desperately trying to stay hopeful and unafraid.  While I feel there is a peace within me that can only be God-given, there’s a little part of my soul that is screaming for reprieve.  I refuse to take a victim mentality through all this, and deep in my soul I know that I can only stay composed through surrendering all to Him.  Please pray for Jenn-Jen and me to be reminded that the only thing we can do is trust in the Lord.

When I am afraid, I will trust in you.  In God, whose word I praise, in God I trust; I will not be afraid.

Psalm 56:3-4 New International Version

February 4, 2008 – The first week of life

Happy birthday Katelynn and Daria!  The two of you are now one week old, and so much has happened in the short span of your lives.  As the number of people offering prayer, encouragement and assistance to our family continues to grow, I look forward to the day when we can sit down together so I can share with you how far you have come along.  A couple of weeks ago, your mother and I received a sheet from the perionatologist with a table showing the odds of survival for premature babies.  I remember praying that we could last to at least twenty eight weeks gestation before the two of you would be born, but you ended up coming into the world only at twenty five weeks.  The chart on that sheet says that you have a fifty percent chance of survival and a fifteen to twenty percent chance of survival without a major disability.  I know it is still early, but I believe that God has plans for both of you.  So you continue to fight on every day and your mom and I promise to cheer you on until the day you come home to where you belong.

Earlier, I promised to have some news about Daria.  Her doctor spoke with me in the late morning and said that it seems like Daria’s heart murmur, or PDA, may be closing on its own.  From what he tells me, her blood pressure is showing more normal signs and he didn’t hear the murmur during his assessment.  I sure hope that this is true, but I also know better than to claim any victory too soon.  Nonetheless, another piece of good news regarding Daria involves a new milestone.  She took her first feedings of breast milk today!  For a baby as premature as she is, the nurse can only give her very small amounts over a long period of time.  Through a nasal gastric tube that runs through her nose to her stomach, Daria is taking about one milliliter of milk every three hours.  Daria also received a follow-up head ultrasound to check on the mild grade 1 hemorrhage in her brain.  Please continue praying that this bleeding stops all together.

After Katelynn’s PDA was repaired, the pediatric surgeon informed us that he would be coming back in a day or two to insert a Broviac line (http://www.cpmc.org/advanced/pediatrics/patients/topics/central-lines.html) for each of the twins.  This basically is a long-term IV line that is inserted in the neck near the collarbone area, and the purpose of putting in the line is to replace the line going through each girl’s umbilical cord site.  A Broviac line tends to hold well in situations where lengthier application is required, as opposed to the umbilical lines, which are used in the short-term.  While this is technically a surgical procedure, the doctor explained that he will do the procedure in the NICU right at Katelynn and Daria’s incubators.  Each nurse that I spoke with tells me that Broviacs are a good thing, as they prevent the need for unnecessary future needle sticks.  Given Katelynn’s successful PDA operation that lasted all but twenty minutes this morning, I have full confidence that the insertion of the Broviac lines will not be a cause of hand-wringing and stress for Jenn-Jen and myself. 

Speaking of Katelynn, I am so glad to tell you that I don’t have much else to report on her tonight.  The carbon dioxide levels in her blood spiked once tonight, requiring an increase on her ventilator rate, but that is really a non-issue compared to everything else.  She is resting quietly with the help of Fentanyl (http://en.wikipedia.org/wiki/Fentanyl), a pain medication to keep her sedate after going through surgery.  Post-surgery blood pressure tends to be higher than normal, but the nurse tells me that it has been coming down slowly.  All in all, thing went very well today for Katelynn.

Dear loved ones, I feel that I have aged ten years during these past few weeks.  Yet, I have an unexplainable peace right now that I know is God wrapping His healing arms around my family in love.   It is time to rest in preparation for the marathon to come.

Come to me, all you who are weary and burdened, and I will give you rest.

Matthew 11:28 New International Version