Tuesday, July 28, 2009

Life Goes On Around Us

I have been chastised by many family and friends for not posting more regularly. Part of the reason for the lack of posts is my lack of time. When Andrea was still in the NICU, I spent my mornings there with her, and the rest of my day taking care of other business. Now that she's home, I spend most of my time taking care of her. While it is true that she sleeps a fair amount, the apnea monitor is our own private Hell. For those of you not familiar with this particular torture device, I'll explain.

When Andrea was discharged with the oxygen, she was also sent home on an apnea monitor. This is a machine that monitors her heart and respiration rates. We can either attach a "belt" with two rubber sensors to her chest, or use "stickies", which are similar to those things the hospitals. As it sounds, they are sticky, and just attach to her skin. Therein lies the first problem. Sometimes they stick to her skin...sometimes they stick to her pajamas. If they come off Andrea, we get a "loose leads" alarm, which is only slightly less painful than an ice pick in your ear. The belt is a little better, except when Andrea moves so much that she dislodges something, and we have loose leads again.

Even worse than loose leads is the MASSIVE number of false positive alarms for apnea. If the machine cannot detect Andrea's respiration, it sounds a repetitive beep, alerting us to the fact that she is not breathing. Now, this would be a good thing if Andrea had EVER had an apnea episode. She has not. However, sometimes her breathing is so shallow that the machine cannot detect it, and so it alerts us. Now, we cannot IGNORE the alarm; the one time we do, it could be a true emergency. So, the vast majority of the day is spent jumping every time the alarm sounds, just to check on the baby. The MOST annoying part is that Andrea sleeps bet wen 5 and 6 hours in the night, but the alarm, which obviously hates us, likes to blare every 1 to 2 minutes, usually between the hours of midnight and 4 a.m.

People have told me that I just forgot how hard an infant is, and that' what I' m reacting to. Honestly, Andrea herself is pretty easy. It's all her hardware that's wearing us out.

In terms of Andrea (for anyone still reading after my tirade) she is doing quite well. (Knock wood...) We see the pediatrician on Thursday, when she will get her 4 month vaccines. (Andrea was 5 months old on Sunday... on Thursday, she will be 8 weeks old corrected age). I'm predicting a weight of 9 pounds at the doctor's office. On Friday, we may be back in New Brunswick for apnea clinic, and we see the pulmonologist on Thursday, August 6.

Many of you have already seen this picture, but I love it, so I'm posting it here. It's Andrea, at her first party (for my son, Kenny) in her first fancy outfit. Thank you Aunt Teeny! (NB: the matching shoes were too big... we'll have to reshoot the picture when she grows into them!)


  1. It's wonderful to hear that Beautiful Andrea the Second is doing well and wonderful to see how well she has progressed (you and your family are always foremost in our prayers) but not so good to hear that Mum and Dad are not getting the rest that they so desperately need...

    God Bless and keep you well, praying for one or three peaceful nights sleep.

    Love sue

  2. Hey guys so glad to see Andrea is growing and doing so well! yippee! When you go see the Pulmo and the Apnea clinic discuss switching over to just the Pulsox monitor which will absolutely alarm if she stops breathing, as her heartrate and oxygen level are monitored, which would drop if she did stop breathing automatically. The WONDERFUL thing about a pulsox monitor is that it alarms much less frequently and is something you can actually live with! We know as we did it for 8 1/2 years... seriously talk to them about it. Lots of families do it and it's absolutely doable. Not sure why drs use the apnea monitors with kids who also have a pulsox!
    Hang in there and I hope the drs will consider this!
    Thinking of you!
    Deb & Scott