January 31, 2008 – Grade 4 IVH

We spent a little time meeting the Child Life Specialist in the NICU.  Child Life services provides a great resource to help introduce young siblings of NICU patients to the intimidating setting.  They have a Specialist set up a time to orient children and even have once a month social events where other NICU patient siblings get together to have fun together.  We thought this would be a great way to get Adam used to this place that may soon become a home away from home. 

All seemed well until we met with the neonatal physician on duty this afternoon. Somehow you can tell that the news won’t be good just by small mannerisms or physical cues.  When the doctor started looking for chairs to have us sit down around Katelynn’s incubator bed, I was getting that lump in the throat feeling.  The news hit us strong and hard.  We had been anxiously anticipating the results of the most recent head ultrasound for Katelynn.  The doctor told us that one was done this morning at 1:30 AM, but wasn’t notated properly, so another was ordered and performed at 1:30 PM.  The results from her first scan back on the 29th showed that she had a “Grade 2″ Intraventricular Hemmorhage (IVH) or bleeding in the brain (see http://www.healthsystem.virginia.edu/uvahealth/peds_hrnewborn/ivh.cfm).  A grade 2 isn’t too much to worry about, but the morning ultrasound showed that it progressed to a grade 3.  Even worse, the afternoon scan showed it at grade 4.  Grade 4 basically means that the bleeding has spread into brain tissue around the ventricles in the brain, and will lead to brain damage and severe disability.  This finding helps explain why Katelynn needed a blood transfusion earlier in the day.

Grade 4 IVH seem like meaningless words and letters in itself, but the consequences have really devastated Jenn-Jen and me today.  When the doctor told us to start thinking about what we may want to decide with life support options, we were overcome with a sorrow I don’t think I have ever felt before.  We went back to Jenn-Jen’s room and spent a good part evening in grief, wondering what kind of a choice is this for a parent to make.  Will Katelynn be essentially in a limited functioning vegetative state?  Will she even survive the bacterial infection that her fragile little body is fighting, which means that the choice may be made for us?  Parents are supposed to outlive their children, or so I always believed.  It just seems so cruel and unfair.

As a follower of Christ, I put my hope and faith in God’s plan for all of us.  Still, I confess that I struggle during days like today and wonder what He is trying to teach me.  What is God preparing me for, and why are things happening this way?  I tell you that I don’t know the answer, and may not know for a long time, but I found a tremendous amount of comfort praying with Jenn-Jen tonight and sharing our thoughts in her hospital room.  One thing that she said that brought me to my knees was “Despite everything we have gone through, I am so proud of Katelynn for continuing to put up such a strong fight.  If she does pass on, I look forward to the day that I can meet up with her in Heaven, where I will have the chance to get to know her better.”  I am crying just thinking about what my wife said, but these tears are partly tears of joy in being reminded that my Jenn-Jen has such faith and the promise of eternal salvation ahead for her.  For those of you that know Jesus will completely understand what I am writing about, and for those of you that do not, I cannot tell you how important it is to consider opening up your heart and mind just to hear why it matters so much.  Please understand that amidst the all the grief and suffering I experienced today, I still find solace in my faith.  Let me know if I can share more with you, as I wholeheartedly believe God keeps me going through the calm and through the storms.  If I may, I would like to share a passage from the Bible that reminds me that God is God:

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.  Then you will call upon me and come and pray to me, and I will listen to you.  You will seek me and find me when you seek me with all your heart.”

Jeremiah 29:11-13  New International Version

 Please continue to pray for miracles to happen with my daughters.  Please also pray for Jenn-Jen and me to have the peace to accept God’s will in this difficult time.  Lastly, please pray for Adam, as he has had quite a week of adjustment.  God bless you all and thank you again from my family for all that you have done for us.  I can’t emphasize enough how much you mean to us.  Goodnight from room 212.

January 31, 2008 – Blood transfusion and more on Daria’s heart murmur

I’ve been spending every night in the hospital with Jenn-Jen since Monday and last night was one of the most difficult.  Jenn-Jen went through yesterday feeling dizzy and drugged, so she wanted to try spending a portion of the night without using Norco (http://www.drugs.com/norco.html), akaVicodin.  The dosage she had been taking seemed to make her almost non-functional.  While she still took Motrin before bed for the pain, it wasn’t quite enough to get through the night.  Jenn-Jen woke up congested and needing to cough, but each time she did, the pain at the incision site was excruciating.  It took some time before the nurse came with Norco, and even then, it seemed like an eternity before the pain subsided.

We spent most of the day visiting with Katelynn and Daria.  Katelynn was scheduled to get a blood transfusion, as she was becoming quite pale.  We were anxiously awaiting to hear from the neonatal physician on any updates he had regarding Katelynn’s infection and scheduled head ultrasound.  

I mentioned that Daria has a heart murmur, which is called a Patent Ductus Ateriosus (PDA).  This is a congenital heart defect that many premature babies have, where blood circulation in the heart can be excessive.  The ductus is actually a hole that is present in developing fetuses.  This hole would normally closes after birth, but premature babies often struggle with the process.  If the murmur persists, it can potentially enlarge the heart and cause hypertension.  Surgery to close the PDA is a potential treatment, but Daria’s vitals are stable right now, so we may need to cross that bridge when we come to it.  More information about PDA can be found at:  http://www.emedicine.com/PED/topic1747.htm.