Today, Lucy celebrates her 1 year open heart surgery anniversary. What an amazing and challenging year it has been for all of us. We have been through so much and had many ups and downs, but I think we have learned a lot and are much stronger from the experience. At the time, we had no idea what we were getting ourselves into. A 46 day ICU visit. Lucy went into surgery that morning at 6AM, and after a grueling 10+ hour surgery, we were told that the repairs looked good and they were going to try to start her heart again. The doctors initially had an extremely difficult time getting Lucy off of the heart-lung bypass machine. Third time was finally a charm, but by that time Sarah and I both needed our own machines to keep our hearts beating. A huge weight was finally lifted off of our chests nearly 10 hours later. At around 6PM, we were reunited with Lucy for the first time and little did we know that our prison-like Pediatric Intensive Care Unit room would become home for many weeks to come. After reading back what we wrote during that time and seeing now just really how sick she was, it’s a miracle that she survived surgery. It’s something now that we, the doctors and even her heart surgeon can joke about. We all love you Lucy! Happy Anniversary! (Here’s the first update and picture after reuniting with Lucy immediately after surgery) (Lucy’s heart surgery documented on Flickr)
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Today, Lucy celebrates her 1 year open heart surgery anniversary. What an amazing and challenging year it has been for all of us. We have been through so much and had many ups and downs, but I think we have learned a lot and are much stronger from the experience. At the time, we had no idea what we were getting ourselves into. A 46 day ICU visit.

Lucy went into surgery that morning at 6AM, and after a grueling 10+ hour surgery, we were told that the repairs looked good and they were going to try to start her heart again. The doctors initially had an extremely difficult time getting Lucy off of the heart-lung bypass machine. Third time was finally a charm, but by that time Sarah and I both needed our own machines to keep our hearts beating. A huge weight was finally lifted off of our chests nearly 10 hours later.

At around 6PM, we were reunited with Lucy for the first time and little did we know that our prison-like Pediatric Intensive Care Unit room would become home for many weeks to come.

After reading back what we wrote during that time and seeing now just really how sick she was, it’s a miracle that she survived surgery. It’s something now that we, the doctors and even her heart surgeon can joke about. We all love you Lucy! Happy Anniversary!

(Here’s the first update and picture after reuniting with Lucy immediately after surgery)

(Lucy’s heart surgery documented on Flickr)

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.

Lucy Kate Update XXII

Lucy has been back in the PICU for six days now recovering from acute pulmonary edema after nearly having a code blue called in the Heart Center. Most of the fluid in her lungs is now gone and the pleural effusions around her lungs are dissipating as well. She has shown much improvement over the past several days and her daily chest X-rays continue to look better.

Lucy’s flow of oxygen has been decreased and she will soon be back to just a nasal cannula. We hope as she continues to recover, that she will not require oxygen when we are discharged from the hospital, but time will tell. She had been receiving her nutrients intravenously, but she’s back on a continuous feeding pump and we are slowly increasing the amount so that her stomach can handle digesting food.

Lucy has been playing more, feeling better and making major progress now that staff intensivist doctors are back in control over her care and she will most likely remain in the ICU until we are discharged to go home.

Lucy had a lot fun playing in her bouncy seat today, but she just can’t seem to catch a break. She hasn’t been feeling well today and currently has a slight fever, so she’ll be treated with two very strong antibiotics to be cautious against risk of infection. Her pulmonary edema has slightly improved for the past several days after changing the dosages of diuretics to increase the excretion of fluid in her lungs. Lucy is also back on vapotherm, which delivers a high flow of oxygen to assist with her breathing and prevent tachypnea (increased rate of breathing) and an increased work of breathing. By definition, Lucy is in congestive heart failure. because the cardiac output is low and insufficient for her body’s needs. Lucy continues to puzzle the Doctors as to what is wrong. She may require another cardiac catheterization that will provide a very detailed look at her heart and other anatomy.
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Lucy had a lot fun playing in her bouncy seat today, but she just can’t seem to catch a break. She hasn’t been feeling well today and currently has a slight fever, so she’ll be treated with two very strong antibiotics to be cautious against risk of infection. Her pulmonary edema has slightly improved for the past several days after changing the dosages of diuretics to increase the excretion of fluid in her lungs.

Lucy is also back on vapotherm, which delivers a high flow of oxygen to assist with her breathing and prevent tachypnea (increased rate of breathing) and an increased work of breathing. By definition, Lucy is in congestive heart failure. because the cardiac output is low and insufficient for her body’s needs.

Lucy continues to puzzle the Doctors as to what is wrong. She may require another cardiac catheterization that will provide a very detailed look at her heart and other anatomy.

Lucy Kate Update XX

Lucy woke up this morning crying and gasping for air. Her lips and tongue were completely blue, she was cyanotic. Her oxygen saturation was in the low 40’s and she was basically in respiratory failure. We rushed to get doctors immediately to intervene. Lucy was given extra oxygen to bring her saturation levels back up and an arterial blood gas was quickly taken to determine what might be wrong.

pH is a scale that measures how acidic or alkaline a substance is. The scale ranges from 1 to 14 with 1 being very acid, 7 neutral and 14 very alkaline. The pH of your blood is extremely important. The ideal pH level for your blood is right around 7.35 and your body goes to enormous lengths to maintain this level. If the pH of your blood falls below 7.35, the result is a condition called acidosis, a state that leads to central nervous system depression. Severe acidosis, where blood pH falls below 7.00, can lead to a coma and even death.

Lucy’s pH level this morning was 7.099.

Luckily, she was stabilized and given bicarbonate, then immediately transported back to the pediatric intensive care unit and we have been here with her all day. The ICU doctors are closely monitoring and working to determine what could have caused Lucy’s respiratory status to decline so rapidly and what might be causing her pulmonary edema. We all hope to have answers soon. Please continue to keep Lucy in your thoughts.

Lucy Update XIX

Our hospital stay is quickly becoming a nightmare. Lucy was switched from a surgery cardiology team in the ICU to a different service after arriving in the Heart Center and they have made no progress all week or offered any advice to help her current issues, which aren’t even specifically related to her heart. Lucy has been experiencing some pretty severe gastrointestinal problems and also pulmonary issues, requiring increasing amounts of oxygen to keep her saturation levels at a comfortable level. She also now has moderate Tricuspid Valve Regurgitation in her heart since surgery and we have to closely monitor that to ensure that it doesn’t quickly become life threatening.

Lucy has good days and bad days. We can tell when she doesn’t feel good. Some days there isn’t much we can do to console her, other days she is all smiles. The best thing for her now is to be at home where she can get her rest and get stronger.

We have voiced our concerns about the care Lucy has received after arriving back at the Heart Center. We have a conference scheduled tomorrow to work on managing her care. We are Lucy’s voice and as a parent you have to look out for the best interest for your child. The past week has been emotionally and physically exhausting. We hope to make some progress tomorrow and get out of the hospital sometime this century.

Lucy Kate Update XVIII

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.

Lucy Kate Update XVII

Lucy experienced trauma to her lymphatic vessels during her heart surgery and it has created several complications. She was moved back to the intensive care unit over the weekend to have a chest tube put in to drain the chylothorax near her left lung. Her respiratory condition improved over several days after the fluid disappeared and her diet was changed. She didn’t have an increase in fluid collecting around the lungs and was eventually moved back to the Heart Center for recovery on Tuesday.

For the past several days, fluid has began to collect again, this time around her other lung. At first, it appeared the change of diet allowed the lymphatic vessels to essentially heal themselves and it was safe to resume with feeding breast milk. We’re still unsure if the new fluid around her lung is due to all of this or is now something completely different.

She has continued to require oxygen the entire time to maintain a comfortable saturation level and will most likely require oxygen at home when she is finally released. We will continue to monitor her with with multiple daily X-Rays and increased diuretics. We will remain in the hospital for at least another week until we have a greater understanding what the fluid is and where it is coming from.