As it turns out, Peanut’s strand of Staph infection was MSSA (methicillin-sensitive Staph), and she finished her round of antibiotics yesterday. The infection has cleared up and the incision is healing nicely 🙂 Her weight is up to 5lbs 9oz now, and the doctors have been throwing around the “D” word during their daily rounds this week. That’s right – DISCHARGE! Although we’re still looking at a few weeks until we can take her home, it finally feels like there is a light at the end of the tunnel.
Now that they infection has cleared up, at this point the only thing the doctors can provide Emily between now and her next surgery, is nutritional support – which can be done on an outpatient basis. Our short-term goal is to correct her protein deficiency, and try to get her off of TPN (total parenteral nutrition) in the next few weeks. Right now she is getting the extra protein and calories she needs through the TPN. We’ve already tried getting the extra protein and calories by adding HMF (Human Milk Fortifier) to the breast milk. If you remember, two weeks ago that failed miserably and caused peanut to “dump” her feedings, which means the output of stool in her ostomy bag was greater than what she took in at her feeding. Last night we gave her some straight protein powder in her milk and it caused her to dump again. She spent the better part of the day today in NPO (Nil per os) status, which is a fancy way of saying they didn’t feed her until her dumping stopped. On to plan “B”. At 2pm they resumed her feedings at 20cc (2/3 of an ounce), she was at 40cc before the dumping started. Now they’re mixing her milk with progestimil (which is a formula specially mixed for baby’s who have a hard time digesting). It seems to be a success so far – her output at 5pm was about half her intake. We’ll see what the rest of the evening brings.
If they’re not successful in finding ways to add the extra protein and calories she needs in her oral feedings, then she will have to come home on TPN. Peanut will then need to have a broviac – a central venous catheter – put into her chest to administer her IV nutrition. Although it’s not ideal, it will be manageable. We won’t be able to bring her home until we’ve learned all we need to about caring for her with it, and there would be a nurse that will come by the house daily to check in with us. We would still bring Emily back every two weeks for visits with her gastroenterologist, neonatologist, and her surgeons. Talking with the surgeons this week, they said they are anticipating doing her surgery in two to three months from now.
All in all, the doctors are extremely happy with Peanut’s overall health and progress considering what she’s been through. We’re also seeing gradual changes in her maturity. She is having more consistent awake and sleep periods, sometimes awake for 2 hours stretches! She’s also starting to focus on faces, and turns her head to follow people as they walk across her room. She’s really is just such a little sweetheart – nothing seems to bother her and she is so content!
WE are praying that you can take her home soon. Her progress sounds good. Love you all.
Thanks Diane 🙂