Kaitlyn Nicole's HLHS story
HLHS stands for hypoplastic left heart syndrome
Tue, 25 Feb 1997
WED. NOVEMBER 13- I'm writing this now, because we are going home soon, and I know I will have NO free time to do it later, so here goes. Born Sept. 12, 1996, perfectly healthy 7lb 4oz girl, except for her heart. Decided to go with the surgery, but doctor was on vacation. Luckily, he called to check up on other patients, was told of Kaitlyn's condition, and returned a week early for her. Very touch and go throughout 9 hour surgery, almost loosing her twice. Came out and went to recovery for 3 weeks. Had power outage night after surgery (very scary) due to construction. Generators kicked on after 30 seconds, but kept running low in halls. Was told it would be a touch and go situation everyday, a roller-coaster ride at times, which it definitely was. Most memorable time was seeing her open her eyes for the first time when she was 3 weeks old!! Made it back to NICU (where we started off from) and was put in the "Going Home" module. Very exciting. Lots to learn about care and meds. Had G-tube surgery Monday, and started feeding through it today. Going very well, and may go home soon.
THURS. NOVEMBER 14-Took her off Cissipride for some reason, but did it "cold turkey". Said it was doing more harm than good. Very cranky after that for most of the day. Got to take her to "play" with the other healthy babies and parents. She LOVED that. Started getting more stuffed packed to take home. Did normal care: bath, meds, etc. Found out were going home Monday, November 18!! I can't wait. Put to bed a very cranky little girl tonight. Left at 11pm. Called at 2am to check in, said she had JUST went to sleep, crying the whole time. They tried everything to calm her, said she probably just wanted Mommy.
FRI. NOVEMBER 15-Came in at 8am today. Nurses called and said she had been awake most of the night, asked if I could come in early to get her asleep. Must have rest before coming home. Found out we may get to go Sat. or Sun. Started signing release papers, since Maureen (our counselor) wont be here. She's so nice, gave Katie a stuffed bear. Have got a lot of bear stuff now that I look at it all. Finally went to sleep, while I called everyone and told them the news. Called Mike, (husband) and told him to take Mon. and Tues. off. Said he couldn't, even though he still had 3 days free time left after working a lot of overtime to get them. That's just great. Can't spend the first two days home with his daughter. Decided to do "newborn" pictures and prints (hand and foot) tomorrow. Packed MORE stuff. Played with babies again. Gave meds at 9pm, but tube got clogged from baby aspirin. Scared she will have to go through another surgery, but nurses comforted me and told me otherwise. Left at 11:30 to do last minute shopping: formula, diapers, and a "going home" dress. Will be a little chilly, so also go a heavy blanket. Called at 1:00 to check in, nurse that answered asked me to callback. "That's odd", I think to myself. Heard a "Code 99" being called. (same as code blue) Sounded very close to phone.
SAT. NOVEMBER 16- Got paged at 1:15. It's the hospital. Called back right away. Nurses crying in background. Told us to come NOW!! Very scared of what's happening. Can hear nurse say, "we're very sorry" over and over in my head. Normally get there in 15 minutes, got there in 7. Ran all the lights we could, going 50-60 mph though city. Ran up to room, ran in, her room is filled with people. What's going on? I fall to floor crying once I realize they're doing CPR on her. Mike doesn't know what to do. Nurses finally come out to hall where we are to tell us what's going on. Her monitor went off, which was normal for her when she goes to sleep because her heart slows so much, but this time it slows to 26 beats a minute, then to 16, then to 6. They try everything to get her back, but nothing works. She's pronounce dead at 1:28, just when I pick her lifeless body out from her bed. I held her for 4 hours, rocking her to "sleep". Asked Mike every half hour if he wants to hold her, say's "No, she's better off with you." Can't believe this is happening to us. Wish we could just wake up from a terrible nightmare, but know it's not possible. It's the weekend now, so will have to wait till Mon. to plan things. Nurses come in to hold her for last time. They all really loved Kaitlyn Nicole. "We forgot just how sick she was", they all say. Just 12 hours before they were saying they would miss her when she goes home, but his is far from what was in mind. Glad, though, that you're in a better place. No more tubes or surgeries to go though. No more Pain. We love and miss you already, but know you're better off. 5:00pm- leave the room to enter a room of mothers wondering what's going on in the closed off room. They feed their babies, while we walk out with an empty car seat and the last of her things. They don't know what to say. I don't know what to say.
TUES. NOVEMBER 19-Had a beautiful funeral. Mother-in-Law got to hold her first grandchild today. God, I wish she didn't have to come up from Kentucky for this. She has heart problems, too. I held her again for the last time for 45 minutes. Put her back wit all of her favorite things, covered her in her beautiful blanket, and shut the casket cover. Many came to burial, most from my side of family, People who never even saw Katie except from a few pictures. Head nurse from her case came, too. Very happy to see her. Still in shock. Reads Husband last poem in Kaitlyn memory. Not a dry eye in the house. Everyone leaves, and we say our final good-byes. "Just remember that we love you, baby. Mommy and Daddy loves you, and always will".
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