t h e m a y f i l e s is foremost a family blog, chronicling everyday life. Life including natural, healthy eating (with recipes thrown in at random), home educating (with ideas popping up sporadically), an attempt to homestead on .2 acres (with very meager yields), raising 3 of 4 children with a rare genetic disorder, and lots of highly personal family triumphs and failures. You may also find an eclectic array of musings on politics, exercise, sewing, emergency preparedness, backyard chickens, and religion. This blog isn't a campaign to glorify anyone or anything. Just simply a record.


A Room with a View

Berkeley moved rooms today. (My heart dropped when I walked in and didn't see her. Luckily the nurse found me quickly and sent me in the right direction!) She now has a great view of Provo. We made a decision yesterday to hide these very specific posts on Berkeley's health and our hospital experiences. It was the recommendation of the Geneticist and my mom, and what Brent and I felt best, to keep things a little more private, as far as our children's health is concerned. I also do not want to jeopardize Berkeley's care with any of the emotional things I say on my blog about the hospital personnel.

Because we now, are fairly positive the three children do have PCD, we have to try to understand everything we can. But we also don't want the children stigmatized in anyway. Because the condition is rare, we don't have a lot of answers and it has been quite upsetting to me. And maybe, just maybe we are wrong. The children don't have any other genetic abnormalities which can present themselves with this condition. I just don't have any other possible explanation which comes remotely close...

Last night I had another emotional breakdown. In my mom's words, "I was climbing the inference ladder." The doctor and the literature she gave us, seemed to be saying, children thrive after the newborn period and through childhood. When adulthood hits, things begin to go downhill with recurrent pneumonia which can cause permanent lung damage. I was panicking, because I always thought my children were mild, and this information made it appear to me, they were following the classic progression of the disease. So I was falling apart in the wee hours of the morning, Brent was fervently searching for information to get us in contact with someone who actually understands this condition.

There is always a chance we are wrong about this. But it doesn't seem likely.

Brent spoke on the telephone with the founder of the National PCD foundation. She was very helpful and had some interesting things to say. Her daughter is 26 years old with PCD. They have spent quite a bit of time in hospitals for treatments similar to cystic fibrosis. But in her own daughters opinion the most effective therapy is her running. She is an avid runner. She sent us a bunch of information and put us in contact with some specialists. It is comforting to be in contact with someone who is familiar with PCD. Information was what I was crying for last night. What I have been crying for, for 7 years. I couldn't handle one more (extremely well intentioned) person telling me everything was going to be "okay" and that they will be "fine." How do I know that unless I have information? I need to have the details in front of me. Information so I can understand the best way to care for my precious children. That's why I was falling apart last night. But today, I think we are getting there.

I think our family is quite uniquely equipped to handle a genetic condition most easily cured by running or other vigorous exercise. A disease so critical to keeping your body in the best condition possible. The Lord truly guides our steps and prepares us uniquely for the challenges he know we may face in this life. I don't want my children to be spending a bunch of time in the hospital with physiotherapy, when exercise is just as effective. The mental damage a hospital could cause is significant in my opinion.

I have decided to finish Emmett't immunizations for any lung or respiratory disease. Berkeley will also have all the immunizations against these same diseases. I now am convinced the benefits for my children are crucial and outweigh the risks.

So how is the little Berkeley doing? Her cough continues to strengthen and become more productive. Yesterday they had to suction her 3 times. Today only once. Her oxygen and flow rate have remained the same. Unfortunately she did not eat well today. In the picture above, I was doing everything I could to make her somewhat coherent of what was going on around her :) She did pretty good at our 10:30 attempt (about 25 ml) but completely slept through 4:30. I will go back and see if she is awake tonight at 10:30.

She is quite the heavy weight in the NICU. Most of the babies are far under 5 lbs. She is still not back up to birth weight, but grew 2 inches in length. The doctors increased her feedings to 50 ml each time to try and increase her weight and build her strength and stamina.

It can be discouraging. Everyday I seem to think, oh one week from now we should be home. Then the next day comes and I think the same thing. And then the next day. No matter what day it is it seems to be one week out.

Berkeley is 38 1/2 weeks now. She will be 12 days old tomorrow morning at 7:03 am. When Dr. Johnson came to me at about 10:30 that morning and told me she was on CPAP, they were giving her surfactant for her lungs, she looked to be only 34 weeks old, and she might be in the hospital several weeks, I didn't really believe him. I thought we would be home in a week or so.

The little knot in my stomach remains. I am hoping this is all worse for little Berkeley because her body is weaker to begin with, and not because the disease is more severe. If it is, we will deal with it.

No comments: