February 10, 2008 – Silent cries

As you may be aware, one of our dearest friends flew in on Thursday morning to provide support and encouragement while our family continues to go through our emotional, mental and physical peaks and valleys.  It has been such a blessing to have her be with us the past few days, but we had to bid her farewell this afternoon as she returned to her family.  We miss her already, and it was particularly hard for Adam to say goodbye at the airport.  Our hope is that we will see her and her whole family in a few months, as they may be making a return to Sacramento for a visit in May.  By then, we hope that we will be that much closer to having Katelynn and Daria back home so we can celebrate in warmth and comfort.  We thank God each day for the gift of our supportive friends and family, and know each of you have made an impact in easing the pain and fatique we have been facing.

Despite all of the efforts in making our lives easier and despite all of the resources we have received through your giving hearts, there are still many things that create for us an inconsolable level suffering.  Jenn-Jen and I arrived at the hospital today to find Daria very agitated and in apparent discomfort.  While the nurse was preparing Fentanyl to help keep our daughter sedated and comfortable, we could see that Daria was crying and waving her arms and legs about.  It stabs so deep in our hearts to watch this because there is nothing we can do other than to attempt to calm her by keeping her bundled with the palms of our hands.  Even worse are Daria’s silent cries, as her ventilator or endotracheal tube (http://www.medicinenet.com/endotracheal_intubation/article.htm) prevents her vocal cords from emitting any sound.  We can only watch her suffering and try to gauge how much discomfort she is experiencing through the monitoring of her vital signs.  As I see her heart rate, respiratory rate and blood pressure increase, I wish so much to take away that pain.  Again, as I posted two days ago, this is one of those “butterfly” moments that my daughter must, unfortunately, endure.

As much as I am tortured by what Daria and Katelynn have experienced, it is far worse for Jenn-Jen.  In her own words, she admits “When I see Katelynn and Daria struggling to survive everyday, I feel like all my energy gets drained out of me.  I feel like I struggle with them to survive another day, and that’s all I can handle.  I try to give whatever I have left to my poor Adam, which is not much.  It’s hard to forgive myself everyday that I have not been much of a mom for Adam, but I try to tell myself that I am doing my best.”  Many of you have been kind in sympathizing with our battles with guilt, and I encourage you to continue praying for my precious Jenn-Jen to be able to surrender all the feelings of self-doubt and inadequacy to the Lord.  As a dear friend of mine reminds me, these feelings are simply lies used by the enemy as weapons in an effort to destroy our spirit.  Still, we are to cast the lies aside and know that God has redeemed us and through Him we find our strength.  Please also pray that I continue to find comfort in this truth, as I have many moments of weakness too.

Going back to Daria, we learned that she may have picked up an infection.  The details of this, unfortunately, are still unknown, but the initial results of the complete blood count (CBC) test warrant the nurses to restart the antibiotics, Ampicillin and Gentamicin.  As it was explained to me, the recent PDA ligation surgery and implementation of the Broviac line in Daria, coupled with her underdeveloped immune system makes her very susceptible to infection.  The goal now is to keep a close eye on upcoming laboratory results to make sure the infection does not worsen.  Isn’t it amazing and outright overwhelming to consider how many battles both Daria and Katelynn must face each day?  They are truly my inspiration and show tremendous strength I wish I could only have. 

Katelynn is showing continued improvement, as she is now taking 2.5 milliliters of milk every hour.  Jenn-Jen and I do feel concerned that she seems so quiet and sedated when we visit.  I asked her nurse this evening if this may be related to her grade 4 IVH, or brain hemorrhage, and she said that there is a possibility.  Nonetheless, the nurse did also say that in the cases of severe neurological trauma in premature babies, she noticed that there is usually no response to handling.  Katelynn apparently uses her arms and legs in protest when she the nurses need to change her position, so this is our glimmer of encouragement.  If you put the two twins side by side, Daria seems overly active to the point where we suspect she is in chronic discomfort and Katelynn appears to be the complete opposite.  The worry Jenn-Jen and I face over our daughters’ well-being feels like we are being crushed alive.  I try to stay positive and continue to hope for the best.

Both Katelynn and Daria are supposed to receive head ultrasounds sometime during the shift tonight.  We pray that Katelynn’s bleeding has subsided and will not require a ventricular shunt.  We also pray that Daria’s borderline grade 2 to 3 bleeding subsides and we receive some positive news.  It is still a perpetual challenge and emotional torture for us to not think about what long-term issues we may face with both girls’ neurological development.  We know that God is the great physician and miracles do happen every day, but we sure could use some encouragement to stay positive and strong through the long haul.

My prayer tonight is found in Psalm 62:

Find rest, O my soul, in God alone; my hope comes from him.  He alone is my rock and my salvation; he is my fortress, I will not be shaken.

Psalm 62:5-6 New International Version