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October 18, 2005

One Step Forward, Two Steps Back

[Ed. Note: Yet another installment from my blog on the March of Dimes web site. I wrote this about a month and a half before they sent our little girl home. Often times the NICU experience is compared to a roller coaster ride, with good reason.]

Well, I was a little concerned about her blood pressure and the need for them to increase her O2 overnight, so I called the doc. He said those dreaded words right away, "I'm glad you called because I was going to call you." MY HEART DROPPED. You never want them to call you, ya know?

Turns out that Daisy has a mild case of Chronic Lung Disease - he said that he had hoped that she would grow out of it by now, and that it wasn't anything to be overly worried about and that they would just be monitoring her. First of all I didn't know she EVEN HAD IT to grow out of?!?!

He also said that the higher blood pressure readings could go hand-in-hand with the chronic lung disease, but they would be doing more tests to make sure that everything else in her body is doing what it's supposed to. He assured me that she is doing very well and that she will grow out of all of this, he mentioned that at this age babies only really have about 5% of their lung tissue and that it will improve as she grows. I just feel so scared now - funny, last night I started getting excited about her not having any spells for 48 hours and now I can't seem to stop crying.

Do most babies born before 30 wks get chronic lung disease? Will her heart be okay??? She is on the nasal canula at 2 litres, O2 between 26-30% - is that a lot??? I just wish someone could tell me if she's going to be okay - the doc said they weren't overly concerned, that it's very mild and she'll outgrow it but still.. so scared. I swear, if I hear the words, "Well, she's little" or "She'll outgrow it" one more time I may pull all of the hair OUT of my head.

Awww well, back on this dreaded roller coaster again.

Posted by sam at October 18, 2005 03:05 PM in Daisy rant

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