Living with Hope

The day we returned from the hospital (the first time) this solitary rose had bloomed in the autumn frost beneath our kitchen window...we called it Killian's rose.

Almost two weeks have gone by since Killian was moved to Children's Hospital and since we have been able to post any updates or pictures. So much has happened in that brief timespan that it seems more like months, yet in many ways the situation is very much the same: supported by the prayers and love of so many friends and family, we continue to keep watch by Killian's bedside as he fights to improve daily.

In the last post I mentioned that he would need to have surgery to close a blood vessel close to his heart. The team of doctors decided to postpone the operation for the time being because he was not showing very many symptoms from the condition. The hope is to at least give him more time to gain strength and weight before the operation, and at best give the vessel a chance to close on it's own. At the latest test yesterday the "murmur" was loud which could be a good sign that it has constricted and the blood is making more noise as it tries to go through a more narrow passage. On Monday they will conduct another echo test where they will be able to determine the size of the opening. Those results will determine the next step. If the surgery does happen Killian will have to be put on a ventilator and as the nurses tell us frankly, "he will get sick before he gets better." Again, this operation does not necessarily put him in grave danger, but it definitely puts his recovery back significantly and opens the doors to other possibilities. We are praying that he will be able to continue on without the surgery.

In all other ways, he continues to beat the averages for his age and condition. As a medical fact, white boys tend to have the toughest time as premies - hence the name they've been given in NICU, "Wimpy White Boys." Killian seems to be more of a Feisty White Boy. He has gone from 2lbs 2oz to yesterday's measurement of 2lbs 10oz and is now very happily taking 11ml of Mommy's milk every 3 hours. He loves to kick and throw his arms around, and when he gets mad he will let you know about it with a little cry that surprises all the nurses for it's strength. His favorite position, though, is with both hands next to his cheeks - exactly how he was on our sonogram picture.

This week started off with three bad days and two bad nights when he had severe spells of bradycardia and apnea. One of those times the nurse called us at 2am to tell us that the spells had become so severe that they had to increase his doses of caffeine to the highest level and they upped his CPAP to the highest pressure. They also took blood samples and found that his white blood count was high, so they gave him a general antibiotic for infection. It turns out that the blood count was high because of a urinary tract infection that he had gotten over a couple days before but his system was still adjusting from it. After all that he needed a second blood transfusion. Mom and Dad had a little talk with our boy the next morning and told him that he wasn't supposed to be doing all that. I think by the time he has his first birthday I will have a complete set of gray hair!  Those are the kind of things that he does day to day to keep us on our toes. Since those rough times he has done VERY well the past couple days and nights.

Last night Nina and I attended a Parents' Pizza night for the parents of kids in the NICU. It's a chance for couples get together and spend some time with other people who are going through the same situation so we can support each other. There were about 20 people there and we all gave a little intro about ourselves and our babies, where they had been and where they were at the moment. It struck us that some of the other people in the room had extremely difficult situations with their children. One young woman told us that her son had been in the hospital for 2 years and had every imaginable condition with his lungs, heart, digestive tract and brain. Others were also dealing with heartbreaking circumstances with their children and most all of them showed a joy that could only come from a suffering love such as theirs. We realized that, though our spot is a little difficult and not what we expected, there are many others that are suffering so much more and are so heroic about it. Killian is very healthy to so many of the babies around him and as of now he does not have anything that will be a permanent condition, so our heart goes out to those whose children are suffering from serious conditions. We are grateful for the many graces our Lord has granted Killian so far, and we continue to ask him to guide us on the path that he wants us to travel as a family.

One of the many resources that Children's provides for the parents is a monthly newsletter and information packet. In that packet was a something written by two parents of a child who was in NICU. Nina and I both identified with it in some ways and we wanted to share it with you as a way of expressing some of the emotions and experiences we are going through, as some of you have gone through as well:

I am not the patient, but please:

Help me
I am not supposed to be here. This wasn't supposed to happen. What is going to happen to my baby? Three months till discharge, you have got to be kidding. We can't see that far into the future. I am afraid to hope.

Support me
The story book image of pregnancy and birth has crumbled before my eyes. I feel alone, everyone else that we know has had a normal pregnancy. They don't understand what we are going through. How do I balance family life with life in the ward?

Counsel me
I feel broken and defective. What did I/we do wrong? The gremlins are knocking on the door. How can I get through this? You say that it might be 3 months before we go home. All of the everyday pressures are compounded by my child's illness, finances or job concerns and family issues to name a few. The bills are mounting, what should I do?

Involve me
I feel inadequate. I'm the dad, the fix it guy. There is nothing I can do to help my child. There are daily decisions regarding my child that are potentially life altering. Lacking any medical knowledge, I still want to make an informed decision. The technology you use to assist my hcild is intimidating. Allow me to understand what is going on.  I'm the mom who has someone else taking care of my baby.

Empower me
I am supposed to be my child's advocate, let me get started. I know I can do this if you let me. I don't care how insignificant it seems, it starts the healing process for me.