Another day in the NICU at Sick Kids. Arabella has been moved to a different room for the next few days. This one features farm animals and bright colours painted onto the surrounding walls. It's full of life and energy. The sun was beaming through the windows this afternoon, warming up the entire room that Belle currently shares with three other babies.
We've seen many babies come and go lately, and it feels like we're the veterans now. The constant ones, who happen to witness the ins and outs of other families. The NICU at Sick Kids primarily deals with babies going in for surgery and for ENT (Ears, Nose and Throat) procedures. Babies don't usually stay here for long. Yesterday there was a baby in Arabella's room that had a large tumor around her abdominal area. A sobering realization for all of us. Look around at everything else going on...these are the kinds of things that other families have to deal with. As beautifully as these rooms are painted, it's a war zone. There's no other way to say it. It's a battle of life and death sometimes. We're so fortunate to have Arabella still with us today. She's doing so well given the circumstances. There aren't many new updates to report. Belle is getting over her fungal infection, and the recent x-rays on her kidney show that the antibiotics are helping. Everything is on track. We're so thankful. There's so much to celebrate.
It's been a busy day and evening. Arabella's eye exam went well. No signs of infection. Chest x-ray looked good, and her head ultrasound came back normal as well. A kidney x-ray still showed (what looked like) fungal deposits so Belle will likely continue to be on antibiotics for the next week, just for precaution. They are checking her up and down to make sure there are no other sources of infection. So far, it's just the kidney area. The antibiotics should help, though. They should eliminate the fungal deposits, and eventually when that clears up, Arabella will be ready for surgery. We'll get there. Overall, the last few days have been going well. Kiera and I are trying to make the best of it, and we've been supporting each other constantly. We're getting to know the nurses really well at Sick Kids, while Arabella continues to gain new admirers over and over again. Everyone's gaga for Arabella 😃 We've been talking to her through the incubator lately, holding her hands and stroking her gently. It's a love from a distance, so to speak. We keep saying we'd love to hug and kiss her. We haven't held her since last week. But no time is wasted time when you're with the ones you love. We'll hold her when she's a bit better. Belle's taking this time to continue to grow slowly (she's up to 1074 grams) and she continues to tolerate her feeds. She seems to be resting soundly when we visit her, so she's definitely getting her sleep. And sleep = development.
A photo from tonight's visit. She was nice and comfy after her 8pm feeding. It didn't take long for her to start dozing off. Sleep tight little Tinkerbell 💗
Little Arabella has a busy schedule planned for her today, including a head ultrasound, a kidney x-ray, and an eye exam to make sure there are no infections in those areas. They are thoroughly inspecting her. A few days ago they found (what appeared to be) 'fungal balls' in her kidney, but since the blood culture came back negative, they're having another look to determine what that might possibly be, if anything. They were almost sure that it was a fungal blood infection, but now doctors think it's likely a common bug in her breathing tube. Let's hope that's all it is! She's continuing with her antibiotics for now, though, just in case. Last night she weighed 1050 grams (2.3 lbs). She's growing ever so slowly. If it wasn't for her PDA issue, she would be a lot bigger by now. But we have to remain patient as everything is sorted out and triple-checked before surgery. We still haven't heard about a possible surgery date. Soon enough, I'm sure. It's not a big deal that she's still so tiny. Arabella has will and strength, and that matters most right now. She'll have the rest of her life to grow and catch up, right?
Before she was fed at noon today, the nurse gave her a few drops of breast milk directly into her mouth from the syringe. She absolutely enjoyed it. Her eyes were huge, as she looked adoringly at the nurse. She loves anyone that feeds her 😄😄😄 Arabella received a slightly larger (wider) feeding tube recently. You can see it in her latest photos. It goes in through her mouth and directly into her stomach. Preemies require feeding tubes since they have weak sucking ability, and swallowing reflex. But the larger feeding tube means that the breast milk disappears within a minute or two. When you watch her being fed, you can visibly tell how much she enjoys it. Hopefully she'll continue to have a great appetite as she grows up!
A view from above her isolette. Her head is nicely snug between the bean bag (or 'froggy' as the nurses call it). Bella likes to feel contained and embraced. She's calmer and less temperamental, for the most part. We've seen her very irritable. It can be difficult to watch. If she's having a particularly hard time, or if it looks like she's in distress or discomfort, the nurses might consider giving her a tiny trace of morphine. They're very mindful of babies' pain. But Belle's been calmer the last few days, so she hasn't required it. Certain days are just so busy for Arabella when she gets handled for things like x-rays and blood tests. The constant check-ups tire her out quickly. Unfortunately, the tests are necessary (especially with a possible infection lingering). During an infection scare, the nurses are forced to hold all feeds, which in turn makes Belle more unruly. And being hungry aggravates her so much more. You're not you when you're hungry, right? So the last few days (since being back on feeds) she has acted like her regular self again. More relaxed and stable. We're happy to see her back to eating, and looking more tranquil overall. Best of all, there doesn't appear to be a fungal blood infection, as first thought. The blood culture and a spinal tap both came back negative, so perhaps it was a bug or some type of bacteria that Belle might have caught in her tube. Today a nurse admitted to us that Sick Kids is generally overly-cautious when it comes to babies that come in for surgery. And if you search long and hard enough (for a bug or bacteria) you'll probably find something! Things here change so much by the day.
Arabella is officially in the 'kilo club'. She weighed 1036 grams last night. It's something to celebrate amidst all of the setbacks lately 😃 Since they withheld her feeds the last few days, we were certain she would lose weight and that started to really worry us. But in fact she was receiving lipids (fats) through her IV, which we didn't find out until today. The liquid is called SMOFlipid and it contains soya-bean oil, medium chain triglycerides, olive oil and fish oil (which are rich in omega-3 fatty acids). Belle will be back on her full feeds tonight too, including fortifier for her extra calories. So while she battles this blood infection she can continue to grow and gain strength, and eventually she'll be ready for surgery in the near future. Full feeds are determined by the babies weight, and are usually about 120ml/kg/day. So right now Bella's getting 11ml of breast milk every two hours. Breast milk is so crucial for Arabella's overall health. It helps build-up her immunity, and it does wonders for her brain growth and development.
Kiera has to be resilient with pumping. She pumps every 2-3 hours, including once in the middle of the night. The milk is then placed in sterile bottles, and stored in the fridge or it can be frozen. Each time we visit Belle in the NICU, we bring a few more bottles with us. When Kiera first started pumping, she would only get tiny amounts (literally a few drops for the first few days), and after a few weeks she started to fill the 90ml bottles, and more. I'm so proud of my girls 💗💗💗
