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!)

Wednesday, July 8, 2009

She Can See Clearly Now...

Andrea saw the eye doctor yesterday morning, for what turned out to be the last time. Her retinas have corrected themselves, and are now completely normal. Whatever vision problems she is going to have will be based purely on the genetics of having two parents with poor eyesight! I have to say, Andrea is really a trooper. She has endured more in the first 19 weeks of her life than most adults do in their entire lifetimes. The eye doctor is particularly unpleasant for her. She gets three sets of eye drops, 15 minutes apart, to dilate her pupils. Then the doctor uses a tiny speculum to hold her eyelids open so he can view the retinas. Andrea makes her opinion known during this procedure... to hear her scream, you'd NEVER guess there's anything wrong with her lungs!

We also saw the pulmonologist from Morristown Hospital last night. In the good news department, Andrea is continuing to improve from her bout with the flu. Her lungs are getting a little clearer, and she seems to be over the worst of it. In the bad news department, this doctor is the first person who's given us an idea of how long we're going to have Andrea on oxygen. His take is that in 4 to 6 weeks, we might be able to BEGIN weaning her off. For no real reason, I think we all assumed she's be off it a lot sooner. I still have to bring Andrea to New Brunswick, where we'll see the pulmonologist associated with Robert Wood Johnson, so maybe she'll have a different philosophy.

I've got to run for now... time to get Kenny off to camp! More when there's news.

Monday, July 6, 2009

The New Normal

We have adjusted again to being back home, but Andrea is still not herself. She has a cough on occasion, and we have a nebulier to give her breathing treatments, should it become necessary. The two most obvious differences are that she is not eating as well, and needs to be coaxed to finish her milk, and she's much more temperamental. It's not unusual for her to cry for no apparent reason, although I'm sure she just feels yucky. Still, Ken and I need to sleep SOME time, so it's been a rough two days. She wants to eat every two hours, and eat less at each feeding. I refuse to allow this, because even in the hospital, she ate every three! I can't go backwards! We see the pulmonologist on Wednesday for a follow up from the hospitalization. I also have to reschedule the three doctors' appointments we needed to cancel last week, since she was in the hospital.

Saturday, July 4, 2009

Home Again!

We are back home with Andrea again. She was discharged from the hospital this afternoon. In the good news department, the pulmonologist treating her in the hospital decided to discharge her without the diuretics she's been taking for about a month. That means we don't have to do blood work any more. I believe Andrea got the flu from one of her trips for blood work, so I'm thrilled to be able to skip the weekly visits.

As happy as we are to have Andrea home, she is still a bit sick. We have a nebulizer and Abuterol to give her breathing treatments, and she has a cough especially when eating. Still, she's much better, and we anticipate her continuing to get well.

She's crying now... I have to go. Will try to post more tomorrow.

Wednesday, July 1, 2009

The Waiting Game

Andrea is continuing to hold her own. She is an amazing baby, and puts up with so much. Today, the doctors decided to put in an IV, "just in case". Since she started having fevers, it is better to have one in, ready to go. The hospital brought down two NICU nurses to get the IV in, as well as to draw some blood for testing. They're running a blood culture (looking for bacteria in her blood) blood counts (especially white cell levels) and electrolytes. So now we wait again for results. It takes 48 hours or so for the bacterial to grow from the culture.

Since Andrea is having fevers, the doctors have taken her off the diuretics. Fevers can be dehydrating, and the medications don't help. The pulmonologist I spoke with today is hoping to be able to keep her off them, so when she goes home, we won't have to keep having blood work done. It all depends on how she responds.

The medication she's taking for the flu should help her get better, faster. The doctor told me that it shortens the duration of the illness, and can reduce the severity of the symptoms. Even so, we're probably going to be in the hospital for much of the weekend, if not all. The first 5 to 6 days are supposed to be the worst of it, so we're halfway done today. (I hope, please God!)

Thank you for the encouraging emails and comments. We need those thoughts and prayers.