Ben & Jake, 7 ½ weeks old

We finally have some answers as to why Ben is still having breathing issues…and hopefully, a solution. Sunday night they did a multi-channel test to see if Ben’s breathing issues were central (related to the brain) or obstructed. Acid reflux, a stuffy nose, and other miscellaneous reasons can cause obstructed Apnea. Ben’s breathing issues are obstructed, which we were told was the better of the two.

In Ben’s case, the obstruction is fluid in his lungs. The doctors are calling this diagnosis “Chronic Lung Disease.” This sounds very scary but we were happy to find out that Ben will be able to play sports and bounce around like any other two year old. He has a very mild case of CLD. Most preemies with CLD are still on the vent and oxygen, neither of which Ben is on. They said this is very common in babies born under two pounds two ounces.

Where to we go from here…Ben is now on a diuretic to rid the extra fluid from his body. We started this yesterday at 2:00 p.m. and can already see improvements. They are going to try to take his cannula out today and hopefully we will see great improvements in the next few days. We hope he will be home by the weekend or early next week. We won’t get our hopes up until he is actually in his car seat and on the way home.

The doctor said he may have to come home on the diuretic but predicts Ben will be off of any meds. by six months old. He also said he should have healthy, normal lungs by the time he is two if not before. This will change our plan of care for him. If he catches a common cold, it can put him back in the hospital. We have to be extra careful with him and exposing him to sick people. I thought I was paranoid before…now I really am paranoid.

When the doctor told me about the Chronic Lung Disease last night I was pretty upset. But when I think about what our prognosis was eight months ago, this seems like a walk in the park. I am glad to know this will not cause any long-term problems for Ben. It just breaks my heart to see my child in distress…whether it is gas pains or breathing issues. You feel so helpless as a parent. You just want to take away their pain, but don’t know how. Thank goodness we have wonderful doctors and nurses.

Our nurses have been so great. Two of our favorite nurses, Casey and Jill, actually gave us their home phone numbers. How nice is that!! I talked to Casey about ten times the night Jake came home. Jill has also been such an advocate for the boys. She treats them like her own. They cuddle with them when we are not there. They make the parents feel at ease. We are so lucky to be at U.M.

Hopefully we will have some good news soon!
Thanks, Danielle & Kevin