Awaiting Diagnosis

We just returned from Mary Bridge Hospital with our little Jonathan. As a few of you know, he has been suffering from breathing difficulties. On average, a baby typically breathes 40 times per minute. When we arrived at Mary Bridge his respiratory rate was 75-80 times per minute and that wasn't even during one of his severe episodes. There have been times I've counted near 100. Two hours later, in his deep sleep his rate less than 30. Much to my relief, his Oxygen Sats. looked great the entire time we were there.

Our brave little peanut had his first EKG tonight, followed by pulmonary x-rays. The x-rays looked great, no sign of any lung issues. His EKG was also normal, though the doctor noted a heart murmur (which is common in newborns) and said the size of Jonathan's heart is on the high side of normal. In an effort to rule out any cardiac issues, he has forwarded Jonathan's test results to a Cardiologist. We are to be in contact with him Monday morning to schedule an Echocardiogram.

There is a very good chance however, that this is exactly what we have been thinking Jonathan has - Laryngomalacia: (literally, "soft larynx") a very common condition of infancy, in which the soft, immature cartilage of the upper larynx collapses inward during inhalation, causing airway obstruction. This is a relatively benign condition that most children outgrow by 12 months of age. Again, the Dr. just wants to rule out the worst case scenarios before formally diagnosing him with Laryngomalacia.

All things considered, Jonathan is doing very well. Most babies in similar situations struggle with Failure to Thrive. Their little bodies have to work so hard to breathe that they burn up any of the calories they have consumed, which in turn keeps them from gaining any weight. Jonathan weighed in at 9 lbs 14 oz. today, granted he had on a diaper and a onesie, but even with that he's still up from the 8lbs he was at 2 weeks.

In the meantime, we just need to continue what we've already been doing - keeping him comforted (so he doesn't get too worked up), "cluster care" (doing all of his care grouped together in a short period of time - feeding, diaper & clothing changes, etc.) so that he has more time in between to just rest, tummy time or other positions to help him breathe more easily and monitoring him.

Please keep Jonathan in your prayers. We are so grateful that God knit his body together and knows every detail of what's going on inside. We would love to ask you to pray for God to grant the doctors discernment in identifying the specific cause. We would also love prayer for peace of mind, as it is unnerving watching him struggle and not having a complete diagnosis right now.

Right now Jonathan is resting (and breathing) peacefully...I think it's time for Jimmy & I to do the same. We'll keep you updated!