Life in the Progressive Unit

We have been busy, busy, busy with Miss Katie here lately so there is a lot to update! I will try to keep the post organized, but expect this one to be long... Feeding: Well, the plan for feeding was to start back on breastmilk April 23rd, which was exactly 6 weeks from the date of Katie's chest closure. Of course, when that date rolled around, there was more information to consider. The pediatric cardiologist said that 6 weeks is the absolute minimum that we should wait to restart breastmilk after Katie's chylothorax (the condition which caused milky fluid to develop in and around her lungs after her surgery). Her lymphatic system was damaged during the surgery and she was unable to process the fat in breastmilk correctly until it heals. She has been on a really nasty (yes I tried it) formula called Enfaport since then that contains medium chain fats that her body can process instead of long chain fats. The doctor told us that, although he would allow us to restart breastmilk if we choose, he would prefer a total of 3-6 months to make sure the chylothorax is healed. After having talked to him further, we now know that if we were to try breastmilk too early, all of the healing that has occurred so far would be ruined and she would have to restart the process all over again. So, that being said, Katie is doing fabulous at the moment and we would hate to mess that up for her. If the chylothorax were to reoccur, she would require chest tubes again to drain the fluid and we would be back in the CVICU... again. Personally, I think we have seen enough of the wonderful docs and nurses in the CVICU to last us til her next surgery! After doing some research online, we have come up with Plan B for breastmilk. We came across a family whose son developed a chylothorax after heart surgery and, in order to allow their son to have the benefits of breast milk, they started centrifuging the fat out of the milk and used medium chain fats to supplement it. Their story can be found at http://www.llli.org/llleaderweb/lv/lvaprmay03p27.html. There have also been medical studies done of the effects of using centrifuged breast milk on infants with a chylothorax, with only beneficial results and no reoccurrance of the chylothorax. So, we have ordered a centrifuge and plan on working skim breast milk into her diet soon. She is going home with a feeding tube and will be getting most of her nutrition directly into her small intestine, but we have been given permission to give her 15 mL by mouth twice a day, which leads us to... Speech Therapy/The Swallow Test: After working daily with the pacifier (and showing paci videos to the speech therapists if they come during Katie's nap) they finally allowed her to do a swallow test, where they have her drink three different types of fluid that are visible by x-ray and take pictures as she drinks each one to make sure they go to the right place. She did wonderfully and even cried when they took the barium away! They got a kick out of that. Thus, we were approved for small bottle feedings twice daily. So far, I have been giving her the icky tasting Enfaport but hope to soon be giving her the breast milk instead. (Hurry with the centrifuge UPS man!) Physical Therapy/Occupational Therapy: Katie has been receiving either physical or occupational therapy each day since Monday. Physical therapy works on whole muscle groups, while occupational therapy concentrates on fine motor skills. We have worked on the pacifier, putting hands together, self-soothing, infant massage, and yes... modified tummy time! In order to do tummy time, we have to use the Boppy (thank you to some very special friends and coworkers!) and put a very soft blanket in the middle hole for her tube to have a safe place to rest. After only a week she is already very good at lifting her head up to try to get the paci or look at one of us, and during one session she even raised her head all the way up several times. She is very comfortable in this position and has even been known to fall asleep when she tires herself out. Working on the "H" word: We have been working daily to check things off of our "getting out of here" list and even as I type, Katie is working on her car seat test (sitting in the carseat for 1-2 hours to make sure she won't desat on the way home). We will not jinx her by giving a date, but we will be going to the "H" word SOON. It will be such a relief when we are no longer living in the hospital. Right now we are taking care of all of Katie's daily needs, including keeping track of her "ins and outs" - ounces of food taken in and the number/weight of diapers, daily baby weighing, checking her oxygen sats, preparing formula and programming her feeding pump, preparing and giving her medications, as well as all of the other "normal" baby things. We also have to keep track of all of these things in her CHAMP book, a log that will be checked weekly by one of the cardiac nurse practitioners to make sure that she is doing well, gaining weight, and that her oxygen sats are where they should be. We have received her home feeding pump, pulse oximeter, scale, and medications as well. All in all, we are liking the Progressive Unit, but can't wait til they kick us out!!! We appreciate so much all the things that our friends, family, and coworkers have done to support us through this time. Please continue to pray that Katie does well, keeps her oxygen sats up, and gets nice and big in preparation for her Glenn surgery in a few months.