Monday, June 1, 2009

6 days

I'm sorry to say that our luck has not improved. Christie and I were devastated to learn that both Chloe and Bryce suffered a grade 2 intraventricular hemorrhage (IVH), which means that both twins have some blood in their brain ventricles. Given that IVH occurs in 20-50% of extremely premature babies, we feared that one of the twins might have a bleed, but we were not prepared to learn that both twins experienced a "moderate" bleed.

Ventricles are pockets in the brain that store fluid which is necessary to maintain brain health. Bryce's bleed is restricted to the left ventricle, but Chloe has bleeding on both sides. A little blood within the ventricles themselves is not harmful, but it can lead to two serious complications. If the blood clots, it can prevent the normal exchange of fluid, which can cause the ventricle to swell and damage surrounding brain tissue. Clotting may also cause some areas of the brain to get less fluid than they need, resulting in brain damage. Clearly, this means that the twins are at significantly higher risk of disability. All hope is not lost, however; the blood often dissolves on its own, causing no permanent damage. If you'd like to learn more about IVH, I highly recommend the following site: AboutKidsHealth.

Unfortunately, this means we've been cast back into the emotional purgatory of "wait and see". They will monitor the twins closely to watch for signs of swelling, and will re-evaluate with another ultrasound in a week. In a month, they'll perform another test to determine if any areas of the brain suffered damage due to fluid deficiency. The hemorrhages almost certainly happened in the first 48 hours after birth; it won't get any worse (i.e., we have no fear of being upgraded to the much more serious category 3 or 4), but it can take several months for the blood to dissolve.

There were a few glimmers of sunlight peeking through today's stormclouds. Bryce has gained two ounces of "quality weight" (i.e., not water retention), and this morning's echocardiogram showed that his ductus arteriosus has closed. As a consequence, they're going to start feeding him tiny amounts of mama's milk to stimulate development of the digestive system. If he tolerates it, they will gradually start weaning him off the IV nutrition and increasing his daily milk allocation. Chloe's ductus arteriosus has also responded to the medication, but there is still a small opening; the current plan is more waiting in the hope that it will close on its own.

UPDATE: Upon reflection, I realized the tone of this post was somewhat negative, and I didn't want to give the wrong impression. We always knew this battle wouldn't be won in the first seven days; there will be many peaks and valleys along the way. This is definitely one of those valleys, but Chloe and Bryce are fighters; as long as they keep drawing breaths into those frail little bodies, we'll be behind them all the way. Print this post


  1. Hello Jason,
    I wanted to let you know that my family is following the progress of Bryce and Chloe on a daily basis. Our whole family continues to pray for their successful growth. However, God who knows when the sparrow falls, certainly has a plan for his two beautiful children, Bryce and Chloe. Is is just for us to hope, pray, have faith, and wait as God unfolds his plan before our eyes. Our thoughts and prayers continue to be with you and your family.

  2. We are here. We have not left you. Sometimes, we are silent and our words seem superfluous.
    So we give you Isaiah's words from Chapter 43:1-4. "Bryce & Chloe, I have called you by name:you are mine. When you pass through the water, I will be with you; in the rivers you shall not drown. When you walk through fire, you shall not be burned; the flames shall not consume you. For I am the Lord, your God, the Holy One of Israel, your savior..for you are precious in my eyes and glorious, and because I love you."
    You always see the sunshine through the clouds, Jason. That means "Your cup is half full) Stay strong and be at peace.
    Grandma & Grandpa