Here is an old post I had in "drafts" from October 2011, guessing I wrote this about a month after the girls came home from the hospital. Not sure why I never posted it so here it is :)
It's a whole new world over at our house. The girls have made amazing progress in the time that they have been home. Here's what we have gotten RID of.
- Isa's NG feeding tube! After a few days in a row of Isa pulling her tube out, and me replacing it daily, we decided maybe she was trying to tell us something. It was time for her to figure out what eating and getting full from taking a bottle meant. It actually made us kind of sad realizing that since she has been eating, she had only had one day in her entire life in the NICU without a feeding tube (as a test to see how much she would eat). She was never given the chance to understand that getting full comes from eating a bottle only since we would always tube whatever she didn't take on her own. It took her a few days to figure it out, but we are three weeks into no feeding tube and she is gaining weight perfectly. Ideally, we want to see her gain 20-30 grams per day, and as of last doctor visit, she is gaining, on average, 25 grams per day! She isn't eating the full amount the "chart" says - the chart says she needs 22 ounces a day, and she logs in anywhere between 15-20 ounces but that seems to be working for her. Getting rid of the tube has made a HUGE difference in our day and she looks so pretty without all that stuff on her face :)
- Fortifier - it's been a while now, but we no longer fortify breast milk, just formula.
- Diuretics - as of our check in today at the Pulmonary Hypertension Clinic, the girls no longer need their diuretics! We will get the results of the ECHO tomorrow but from the preliminary results and the doctors assessment, the girls current dose of the medications most likely is doing nothing at this point and they should be OK without them completely. If we notice swelling, trouble breathing, slowing down in eating, etc. we will need to regroup with the team and see if the medications need to start again but we are all hopeful that's the end of them.
Both girls are smiling and Isa has let out a few giggles too. Both still roll from tummy to back every now and then, make excellent eye contact and have great neck support. We had our follow-up with the Physical Therapy Clinic a few weeks back and the girls are right on track for their adjusted age and we won't need to be seen again by PT until the girls are 6 months adjusted in February. Lia still will get her eye checks, the right eye is clear but the left still has a ridge that they see. We go again in late November (graduated from going every 2 weeks to a 4 week stretch now) and fingers crossed it's our last. Right now the ladies are stringing together anywhere from 4-7 hours of sleep at night. As of Thursday, they weight 9 lb, 15 oz (Lia) and 9 lb, 5 oz (Isa).
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