Wow! What our poor little angel has gone through the past few days! Let's start with Thursday. We took her to Dr. Canty's office to have her button put in. She was SO happy prior to the apt. She was playing on the bed in the office, scooting around on her back and laughing out loud, it was adorable! THEN, it happened. Dr. Canty, her surgeon, came in to do the procedure, it was NOT pleasant! Thank God I gave her Tylenol before we went in! Here's how it went down; He sucked the water out of the balloon holding the old tube in, YANKED it out of her tummy and she SCREAMED!!!! I felt so bad for her! Then he thrust the button into the hole and blew up the new balloon. She screamed the whole time, it was horrible. Then, he used silver nitrate to burn the granulation tissue off from around the hole in her tummy. He swears that Maryam shouldn't be able to feel it because granulation tissue has no nerve endings or feeling. But she continued to scream!! I felt horrible. She just stared at me with tears rolling down her cheeks, her bottom lip curled under and quivering, it was so sad.
But, less than 24 hours, she looked like this again! Happy as can be! On Friday we saw her pediatrician and she told us that Maryam is up to 12 lbs 5 ozs! Hooray!!!!!! She's finally on the growth chart!!! She's 1% on weight, 10% on head circumference and height!! But she's on the chart! This is the first time she's been on the chart for her adjusted age since she was term! We're so happy about that.
And in MORE good news, at Dr. Ratnesar's office she tested at 100% two times at 1/32 liter of oxygen!!!! So, we went back to the NICU to pick up a pulse oximeter that has a computer attached to it that can perform a 12 hour trace. We did the trace last night from 9:30pm to 9:30am and I don't think she passed. She had to stay above 95% oxygen saturation for over 90% of the trace. It seemed that every time I looked she was between 94%-96%. Brett will be taking the box back on Tuesday and RT has orders to download the report immediately and let us know if we can keep her at 1/32 liter or if we have to bump her back up to 1/16. I did a few spot checks today and she was at 95%-96% every time I did it. My goal, as if it matters, is for her to be off of oxygen entirely by her first birthday.....say your prayers!!!
You can see her new button in this picture and the picture above. That button works as a valve for her to be fed through. We uncap the button and insert the feeding tube, once inserted, we rotate the tube to open the valve. We can feed her 3 different ways using the tube. We can fill a syringe with the formula and push it directly into the tube. Or we can attach a syringe and slowly pour formula into the syringe that drips into the tube using gravity. Or we can hook her up to the kangaroo pet pump and have the formula pumped into the syringe or directly into the tube. It will take some time to get use to her new button, but so far its way more convenient than the old tube. And we use that button to vent/burp her too. Since she still can't burp naturally, we open the valve to let air out. Its unusual, but it works!
I hope that answers many of your questions! If not, email me, I'm happy to clarify anything for you!
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