Feeling Better

Lucy is out of the intensive care unit and in the Heart Center again, which has become our second home. She seems to be feeling better and as always, turned herself around without much intervention from doctors. Although she did require A LOT of oxygen support at first, it could have been a virus or possibly a reaction to her H1N1 vaccination, with swelling or narrowing of her trachea. We certainly will not be giving her the H1N1 booster shot.

Pulmonology would like to do a full 8-hour sleep study once she has fully recovered from her recent illness, to determine if she has sleep apnea and how much she actually obstructs her airway while sleeping at night. Unfortunately, Lucy's prolonged recovery hasn't allowed her to be home much to play and work on her neck control. Overall, she isn't as strong as she was prior to surgery. We hope to get home and stay there for longer than two weeks to really work strengthening her muscles and getting her orally interested again.

Lucy is still learning how to use her recently found voice, which is really cute, because she sometimes sounds like she's about to cry when she's just still learning. Pretty soon, she'll be babbling non-stop and we can't wait.

Lucy Kate Update XIV

We have been closely monitoring Lucy's pleural effusion for the past several days and it hasn't improved or increased in size. It's a minimal amount that won't require another chest tube and hopefully it will not affect her breathing. It's most likely lymphatic fluid that slowly accumulated after we resumed feeding breast milk, and since we have changed her diet, no more should accumulate.

Lucy is now being fed Enfaport, which is a 30 calorie, iron-fortified, milk-based infant formula with MCT fat for babies with Chylothorax. MCTs are an important source of calories for babies with this condition, since they are not transported in the chylous fluid and therefore will not accumulate in the chest cavity. Lucy has been fed with a nasogastric (NG) tube since birth due to prematurity and also an increased risk of aspiration. She's always had difficulty swallowing because of hypotonia, which is low muscle tone. She normally received six gravity fed bolus feedings a day and each feeding lasted about an hour.

Lucy had been showing signs of extreme abdominal distension, cramping, pain and vomiting since starting the new formula. At first, we weren't for sure what was wrong. After further investigation and a KUB X-ray, we knew she had gastrointestinal problems and requested to have a consult with GI doctors.

The doctors think Lucy might have rapid gastric emptying also called dumping syndrome, which occurs when undigested food empties too quickly into the small intestine. Treatment includes changes in formula and medication.

We meet with dietitians on Monday to determine what can be done to change the nutritional makeup of her new formula for a long-term solution. Lucy is now receiving a continuous drip feeding of Enfaport to let her stomach readjust and allow her food to slowly digest over a longer period of time. Lucy never stops eating. We have never been so jealous in our entire lives.

Lazy Bug

"I'm all reclined and comfortable in my bouncy seat. Can someone bring me the remote? This Baby Einstein DVD is boring me."

Lucy Kate Update XI

Lucy still has fluid near her left lung inside the pleural cavity. It's constricting how far her lung can expand to oxygenate her blood and she will continue to receive oxygen through a nasal cannula until it dissipates. She's being given a diuretic to help force the fluid out of her body, but it's obviously not targeting the fluid directly in her lung.

Overall, her recovery is still slowly progressing forward. The echocardiogram of her heart that was taken yesterday showed the tricuspid valve and mitral valve have some regurgitation, so she could be a candidate for valve replacement once she gets older, but it's nothing alarming at this point. The echocardiogram also showed a small Ventricular Septal Defect (VSD) still in her heart, but again, nothing alarming yet. We are still waiting to speak with the cardiology surgery team and surgeon about the results.

Lucy has been extremely fussy and crying a lot for the past five days. We recently stopped medication that we believe was causing her increased irritability. She is almost back to her regular feeding amounts and schedule. She's finally keeping milk down and working to get her weight back to where she was before surgery. She'll be a chunk again in no time.

We will be discussing our plan with the doctors today to determine a goal for leaving the hospital. Lucy is growing tired of laying in bed at the hospital and is ready to have more fun at home. I can't blame her, we are too.

Lucy Kate Update X

Lucy’s recovery has gone well. We have been in the Riley Heart Center for four days now and we’ve made progress to get her medications and feeding schedule/amounts adjusted. She’s feeling a little better and is mostly smiles now, but has been extremely fussy and has had periods of constant crying. Her sleep cycle was completely backwards, but we’re working to get her back on track. She’s still on a nasal cannula with ¼ liter of oxygen, which is minimal. Her oxygen saturation drops when she is in a deep sleep, so she’s getting an echocardiogram today to determine what might be causing that.

After we get her off the low amount of oxygen, we’ll be very close to going home and taking care of her there. She still has a lot of time to recover and get her strength back. She lost nearly three pounds during surgery, which doesn’t sound like much, but it equates to about 20% of her body weight. To put that in perspective, I would have lost 35 pounds, so it was obviously very traumatic to her body and she’ll need months to fully recover, but we’re in no hurry.

Lucy will continue to recover in the Heart Center and hopefully she can come home sometime this week and be right where she belongs.