Bad News

Our first day home with Miss K was great, we took her to see her pediatrician for the first time (I deliver my babies out of town so we use an on-call pediatrician at birth and then take our babies to our regular pediatrician in our home town within days of bringing them home) she was doing great and still steadily gaining weight. We updated him on her birth story so he'd know what to be concerned about and what to watch for as she grows. Her heart was beating steady and normal every time we checked her and at her Doctor's check-up.

Day two home we started to feel a little concerned, we'd been listening to her heart and thought it was fine but it was beating quite fast, though we couldn't tell ourselves if it was too fast or normal.

Day three home we were really concerned. Miss K had become slightly lethargic and was nearly impossible to wake up for feedings. When she would wake up to eat she would only eat a few minutes then go back to sleep, no amount of jostling would wake her until the next feeding time. We had been listening to hear heart more often and it was getting harder to count the beats. The last time we listened to her we tried to count it out with a stopwatch but couldn't keep up with it, we were guessing it was over 200 BPM but we weren't sure exactly how fast it was really going so I suggested we take her to the after hours clinic and simply ask a nurse to listen for us without checking us in. The nurse at the clinic hooked Miss K up to a heart monitor and we were told her heart was beating at 280 BPM, they rushed us to the local ER. Our ER in this small town is not equipped for much, they are especially not equipped for infants and tiny children. They were scared to death to hear a heart beat that fast in an infant, this was something they had never seen before in their hospital. Of course they panicked, thus further panicking my husband and I. All I could do through it all was cry hysterically. The on call Doctor was in a panic, we told him the name of Miss K's assigned cardiologist and he tried to contact him, but was unable to for unknown reasons. The hospital we delivered in suggested they give her Adenosine. The on-call Doctor refused unless the situation worsened, they were scared to death to give that shot to an infant. After much consideration everyone decided Miss K was quite stable considering her condition so they suggested we take her to Primary Children's Medical Center (45 minutes away) via ambulance.

3 Days After Initial Hospital (NICU) Release 8-16-11:

Little Miss K was rushed to Primary Children's Medical Center last night with what they call SVT, if you want to know the meaning click here, basically her heart rate should always be at about 120-140 beats per minute but she goes into a rhythm that is at 280+ beats per minute and until this morning she wasn't coming out of it on her own.

When we came to PCMC they gave her a shot called Adenosine at a low dose, this is what they gave her when she was first born and it worked, it's supposed to stop her heart for a split second and restart it at a normal rhythm. Last night the first dose did not work so they gave her a break and then issued a higher dose, which did not work either. Then they started her on a prescription drug that she'll have to keep taking until 6 or 12 months old, Propanalol, and then tried another shot of Adenosine, this worked and she calmed down and relaxed for quite a few hours.

It was a very long night spent feeding her, cuddling her, and praying. Daddy had to go back to work this morning so he left me at 6:00am after a few hours of sleep for himself. During the night Miss K went back into SVT twice and they had to suffocate her with a bag of ice to bring her heart rate back down, for some reason this works wonders (See Physical Maneuvers). After Daddy left she did it again, this time she came out of it on her own after 9 minutes, it was a huge relief. She then did it 2 more times where she came out of it on her own after 20 minutes, very scary and heartbreaking to watch. She did it again around 11:30am and came out of it after only 2 minutes. Then she went back into SVT again around 3:00pm, this time she had to have the ice treatment again to bring it down. It's really heartbreaking to watch, as a mom I want to scream at them to leave her alone and take the ice bag away. She's had 2 full doses of the Propanalol now, they want her to have 5 before she can leave here. She only gets it every 8 hours so we're going to be here in the hospital until Thursday morning at the latest.

The plan when we go home will be to keep giving her Propanalol and monitoring her, they will send a Holter Monitor home with us for about 48 hours then we will send it back to them to analyze the results and we'll go from there.

Right now Daddy is out cold on the "bed" they have in her room, I am ready to join him. Miss K is worn out beyond exhaustion and pale as can be. She has a hard time eating very long so I'm having to pump every feeding to keep my milk up. She's asleep most of the time, the only time she wakes is to start eating only to fall asleep again or to go into SVT.

We're praying for a speedy recovery, every dose of Propanalol is supposed to make it harder and harder for her heart to jump into SVT again.

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