With returning to work, I’ve found it difficult to find time for an update on Peanut! Heck, I’m finding it difficult to find time to shower! But enough of that…Peanut has had some exciting changes over the past two weeks, so here’s your long overdue update!
Aren’t I cute?!?! I’m now 10lbs. 9oz!
Last week she made the jump from TPN (total peritoneal nutrition) to a fluid ringer. This means Peanut is now getting ALL of her nutrition by mouth. Unfortunately, her waste output continues to climb, which is why she needs the fluid ringer (a saline & electrolyte solution) overnight to keep her hydrated. There is always the chance that if we don’t get her output under control, she may have to go back on TPN. Fingers & toes crossed that we won’t have to backtrack!
With weaning off of TPN over the past month, her growth has slowed substantially. So, in order to increase her calories, Peanut is now up to drinking 80ml (up from 75ml) per feeding every three hours, and she can now have 5 bites of rice cereal three times a day. As you can imagine, she is very happy about this change! For the first time in her life, she seems content after a feeding. It may seem like a small change, but it’s made a BIG difference! Before this, the amount we fed her orally never really took the feeling of hunger away, although she was getting extra calories through her TPN. Imagine only being able to have a small snack every three hours – never a meal. It may curb your hunger for a short time, but the hunger quickly comes back. This is how Peanut lives…she is hungry all the time. It may seem cruel, but if we fill her up, she will “dump” – meaning everything will come out the other end too quickly and she won’t get any nutritional value out of the feeding. In a sense, we are “training” her gut to learn how to slowly breakdown the food and absorb the nutrition.
Two more things we’re keeping our eye on (aside from the high output), is her liver function and her central line. As you may recall from her last update, her liver function tests (ALK, AST, ALT) are abnormally high. She has been on a liver medication, ursodiol, since early December, however, her numbers are still climbing. The lipids/fats in TPN over time is very hard on the liver and can cause permanent damage. This is one of the reasons why her doctors have been so aggressive recently in trying to wean her off of TPN. So we’re hoping that next week’s labs show a reduction in her ALK/AST/ALT scores.
The other reason why the doctors are pushing to get off of TPN so quickly, is because her central line (Broviac) is continually developing blockages. Overtime, the sticky solution (dextrose/sugars) in the TPN builds up, or blood around the end of the line clots, or a combination of both and creates a blockage in the line. She has had three blockages in the past month and a half – last night being the third. A nurse is coming today to administer a medication, t-PA, in her line that will help break-up the blockage. Ideally, the doctors would love to be able to remove the central line, due to the high risk of infection associated with it. But because of her high output and need for extra fluids, they won’t be removing the line anytime soon.
Peanut’s next appointment with her doctors (GI, surgery, and neonatology) are next Thursday the 24th. Kind of sounds like a lead into a bad joke…A gastroenterologist, a surgeon, and a neonatologist walk into a bar…I’ll stop there! I’m sleep deprived. We’ll update you after the next appointment!
By the way, in case you’re wondering…Peanut has had no problems adjusting to having mommy back at work. Grandpa S & Nana O are doing a fantastic job with her. As you can imagine, she has no shortage of love and attention from those two!
