Lucy has been hospital free and doing well at home for the past 14 days now, which is the longest continuous stretch since the beginning of August. She’s been having tastes of pear baby jar food and practicing sitting up all by herself in her Bumbo seat. We decorated for Christmas and she’s ready for Santa’s big jolly fatass to come down the chimney. She loves staring at the lights on the tree, but isn’t quite sure what to think about the rest of the decorations. Lucy’s a pretty big critic when it comes to interior design.

Lucy has been hospital free and doing well at home for the past 14 days now, which is the longest continuous stretch since the beginning of August. She’s been having tastes of pear baby jar food and practicing sitting up all by herself in her Bumbo seat. We decorated for Christmas and she’s ready for Santa’s big jolly fatass to come down the chimney. She loves staring at the lights on the tree, but isn’t quite sure what to think about the rest of the decorations.

Lucy’s a pretty big critic when it comes to interior design.

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notes: 98

Once again, Lucy has fooled us. The first night in the intensive care unit was pretty scary though. Our goal for the night was for Lucy to not be ventilated. She was requiring a large amount of oxygen to keep her saturation at a safe level. She was obstructing her airway in her sleep and that was causing an increased oxygen at night. By the next few days, she started to turn around and we were able to decrease her oxygen. We are now out of the ICU and in the Heart Center at Riley where accommodations are little more cozy. Lucy has also been choking and retching more and now she is bringing up green bile. We have to wait until Monday for radiology to see if her J-tube is causing the problem. It hasn’t been a very enjoyable experience for her. Lucy also found her voice and is much more vocal now. She’s learning to make sounds and loves to talk to her baby dolls and the toys she holds in her hand.

Once again, Lucy has fooled us. The first night in the intensive care unit was pretty scary though. Our goal for the night was for Lucy to not be ventilated. She was requiring a large amount of oxygen to keep her saturation at a safe level. She was obstructing her airway in her sleep and that was causing an increased oxygen at night. By the next few days, she started to turn around and we were able to decrease her oxygen. We are now out of the ICU and in the Heart Center at Riley where accommodations are little more cozy.

Lucy has also been choking and retching more and now she is bringing up green bile. We have to wait until Monday for radiology to see if her J-tube is causing the problem. It hasn’t been a very enjoyable experience for her.

Lucy also found her voice and is much more vocal now. She’s learning to make sounds and loves to talk to her baby dolls and the toys she holds in her hand.

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notes: 88

We can’t wait to smooch those rosy red cheeks!

We can’t wait to smooch those rosy red cheeks!

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notes: 69

Lucy Surgery Update

Last week, Lucy was requiring more oxygen and had more fluid in her lungs, so we’re back in the hospital. She was admitted Wednesday and she is scheduled for surgery for a gastrojejunostomy feeding tube today. Lucy has always had a feeding tube inserted through her nose and into her stomach, since she never learned to swallow or feed orally. Now that she’s bigger, a tube taped to her face is no longer an option. It will also help with her breathing and swallowing, to no longer have a tube down her throat. The GJ-tube will be radiologically inserted through a small incision in the abdomen into the stomach, one port in the stomach and the other threaded into the jejunum. Due to her feeding intolerance, she’s getting the J-Tube as well. Her medicine will be delivered to the stomach via the G-Tube and her feeding will still be continuous into the jejunum. Obviously, not going to fix most of her problems, but we will be able to deliver her medicine more effectively and not worry about how well they are being absorbed.

Lucy will be under anesthesia during surgery, which will require her to be intubated with a breathing tube while she is asleep. We hope that she comes out of sedation quickly and is able to breath on her own immediately after surgery and doesn’t require prolonged breathing assistance.

Finally, we can get the tape off of her face so we can smooch her rosy, fat cheeks. Please keep her in your thoughts today for a smooth, successful surgery.

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notes: 75

LUCY WINDMILL! is trashed at prom.

LUCY WINDMILL! is trashed at prom.

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notes: 66

Good To Be Home

It’s been a week now since we were discharged from the hospital and Lucy is much happier now that we can roll around and play on the floor. Carpet is such a luxury! Lucy has had a doctor appointment every day this week, so she’s been very busy keeping up appearances.

Lucy is still on oxygen to help keep her “reserve”. She doesn’t require oxygen to breathe, but it will help her pulmonary hypertension and overall full recovery. She’s also still on a continuous feeding pump until her stomach can tolerate full individual feedings again.

Lucy has recently taken a liking to her hand. As soon as she catches sight of this thing that is attached to her body, she’s in complete awe. Probably staring at the unattractive manicure that Daddy gave her.

It’s just so great to be home again and getting back to the way things were.

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notes: 76

After 46 days in the hospital, Lucy’s heart is fixed and she’s finally home, right where she belongs. Thanks again everyone for your love and support. You have made this experience something we’ll never forget.

After 46 days in the hospital, Lucy’s heart is fixed and she’s finally home, right where she belongs.

Thanks again everyone for your love and support. You have made this experience something we’ll never forget.

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notes: 226

Lucy Kate Update XXIII

Lucy has been doing very well for the past week and we have gotten to the point to where she can now be safely clinically managed with a huge list of medications. She’s currently taking Poly-Vi-Sol vitamin drops with iron, Aspirin, Omeprazole for reflux, Atenolol & Captopril for the treatment of hypertension, Digoxin for congestive heart failure, Spironolactone, Furosemide & Chlorothiazide sodium to manage excess fluid associated with congestive heart failure and Sildenafil to treat her pulmonary arterial hypertension (PAH). The combination of these medications help manage the many complications with her heart and lungs.

One of Lucy’s medications, Sildenafil, otherwise known as Viagra, is also used to treat erectile dysfunction. I’m not responsible for the loss of this prescription when we get it fulfilled at the pharmacy. Sorry about your lungs, Lucy.

Her PICC IV line was pulled today and we are preparing to be discharged from the hospital soon. It’s been a long time since we have been home, 45 days to be exact. We have been living inside of the hospital since the middle of August. We can’t wait to use our own shower and sleep in a real bed. It’s going to be so awesome.

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notes: 70

“Take care then, bye bye now”

“Take care then, bye bye now”

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notes: 109

Our tiny little panhandler loves to wear sock hats and collect aluminum cans.

Our tiny little panhandler loves to wear sock hats and collect aluminum cans.

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notes: 111

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