Zoey has been very busy over the past few weeks. She's starting to smile and loves to interact with us face to face and is responding more and more to our facial expressions every day. She has also been doing some tummy time (the best she can with her g tube) and is working on building her neck strength. Sometimes she's kind of a show off with this because she pretends like she has no muscle strength and then the next day blows us away and shows us how strong she really is. She's looking less and less like a bobble head every day.
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The last week in May, we decided to try a bottle feed for the first time since we have been frustrated with the g tube leaking. Our thought was that the less we use it and move it, the more the skin around it can stay snug and therefore decrease the amount of leaking. So while out to dinner with my parents, I (being a first time parent) decided it was the appropriate place to try a bottle feed for the first time because everything would go perfectly. My Mom thought I was crazy! So we tried it and she didn't even hesitate and took the bottle like she had done it a million times before. She even sucked down 2 ounces of milk in less than 5 minutes. So it was not surprising that she spit up a little but surprisingly kept the majority of it down. Since she just opens the hatch and chugs her feedings down, we have to stop her every half ounce or ounce and burp her and make her take a break and breathe a little.
And now onto the medical updates, Zoey's bilirubin had decreased from 6.3 to 3.5 in a week and then down to 1.5 the next week. These are HUGE decreases in that period of time compared to how it normally had been decreasing. This is now back to a normal range and we follow up with GI this coming Monday to see if she can discontinue the meds to help her liver catch up. She had an ultrasound done of most of her major organs in preparation for this GI appointment. As I mentioned a little already, her g tube has been a point of frustration despite being a great thing in the beginning and allowed us to go home when we did. We haven't used her g tube for a week and half now at all with the exception of giving her meds through it a few times. We followed up with her surgeon and he gave us some tips to help her skin feel better around the g tube and inflated the balloon more that keeps the g tube in. The next day it was clear that this was helping since the leaking had decreased a LOT. One variable we cannot change is that her car seat pushes right on it so it leaks whenever she's in it. So we just plan ahead and pack extra outfits. The goal is that her g tube can come out in the beginning of July if she gains enough weight over the next month. We met with the nutritionist who adjusted her feeding amount and schedule to help her with the weight gain. It was an increase of an ounce per feeding which might not sound like a lot but it is for this little girl. She handled the increase well and continues to chow down. Her most recent weight was 6 lbs 12 oz. We are hoping for a 1 1/2 to 2 pound weight gain over the next month to get the tube out.
We also met with the opthamologist who did surgery on her eyes towards the end of March. A few weeks ago, he said that the right eye was fine and we were watching 3/4 of the left eye still. On Wednesday, he said that they were all healed fine and we didn't need to follow up again for another 6 months, then not for another 2 years if all remained fine. This is great news for now and we could tell she was doing better because she was tracking more and has been very alert looking at things.
Her pediatrician suggested that other than building neck strength we should try to get her to look to her left more. Her bassinet in the hospital was set in a way that made her look to the right all the time to the rest of the room so that is still her preference. So now we've changed how we lay her in the crib and on the changing table to encourage her to look to the left more. She's getting better each day and the occupational therapist said she has good flexibility with it still and that we're doing all the right things to help her learn to look to the left.
Overall Zoey is doing very well and loves being at home! We spend lots of time snuggling and I love being off work with her. We went to my Mom's work last week to meet everyone who had been watching her journey and spent 4 1/2 hours meeting everyone. She was such a trooper for such a long meet and greet! She has also met many other friends and family in the past couple of weeks. She is a good shopper and doesn't mind being in the vehicle riding around. Zoey also rarely cries except for when she's hungry, gassy, needs a diaper change, or is all wet from her g tube. This makes being a parent pretty easy! We count our blessings everyday for how well she's doing!
Zoey and I took a trip down to Rochester again on Monday for her follow up appointment with the GI Doctor. She looked at her labs from the past month and decided to discontinue her meds to help her liver. After more blood work, her bilirubin was down to 1.2 so a little higher than they'd like but figure over the next month or two that it'll resolve itself the rest of the way. The Dr felt this would be better than continuing her meds for a couple of weeks since she's so close. They'd like her bilirubin below 1.0. She also looked at the ultrasounds that were done last week. There's a little spot on her liver which she chalked up to a little birth mark that will go away over time. It was 4mm a couple of months ago, and was 3mm last Wednesday. She suggested just having an ultrasound done in 6 months to a year to check it again before putting the issue to rest and also just for peace of mind. GI doesn't really even need another follow up appointment, just blood work done here in a month or two and another ultrasound done in 6 months to a year. So that was really great news and the Dr was extremely pleased with how she's doing!
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