Kumba continues.........

So to give an update since my last post......the roller coaster keeps taking our little family for quite a ride.  On Wednesday 12.14.11 mi Gorda had yet another episode, the nurses say she doesn't like Wednesdays because this is her third week in a row having an episode.  This episode was bad because she got set back to the Cpap, I was really sad when they called us & told us.  I just lost myself in tears, to think she was doing so good even with the episodes the two weeks prior she still maintained herself on the nasal cannula, but now the doctor said she was "Pulling" to much in her breathing & needed the machine's assistance.  The Cpap helps by providing "Continuous airway pressure", so it makes breathing much easier for her.  Mommy though naturally worries & becomes scared.  I immediately started hoping that she wouldn't get set back even further because from Cpap she would go back to being intubated & we do NOT want that!!!  Thankfully though through today she is well, by Friday 12.16.11 she was off the Cpap & put on a high flow nasal cannula.  Since she continued to do well on that, as of Sunday 12.18.11 at night, they put her back to a regular nasal cannula.  Oh on Thursday 12.15.11 the day after her episode we had a parent conference at our request to ensure all the doctors are on the same plan.  Since all doctors work differently it's very difficult for them to coincide with a "plan" for her.  So the intent of the meeting was to express our concerns & ensure all doctor's & nurses are on the same plan with Sophia.  Which the entire team honestly is great, we really do appreciate every single one of them, but we just want to see progress.  They were treating her for Reflux as I mentioned before & the cereal seems to be helping so far, but yet after each episode the doctor's would order all procedures as if she had an infection (yet for 3rd week in a row it turns out not to be & all results come back negative).  So concerned after the 3rd weekly episode that maybe it was due to Reflux & not infections we wanted to get this cleared with the big hanchos!!  In summary doctors say she has "Chronic lung disease" because at her age she is still getting oxygen assistance and not really being able to be weened down.  It does seem she has reflux hence the reason for adding the cereal to her diet & giving her Zantac (but they don't want to do special exams eg. Upper GI, since it is evident & they are treating her for it). So they started her on nebulizer treatments (2 different medications) to help her out, and will continue to treat her for reflux.  It's basically a sit & wait for her lungs to get stronger & in turn hopefully get off the oxygen soon. We were told that apparently she could go home on oxygen a lot of preemies do, gosh I hope that won't be the case!! Anyhow as of today Monday 12.19.11 Gordis is not really improving much on the bottle feeding she is still getting 1 bottle feeding per shift, imagine that she has to be getting ALL her feeds fully by bottle to go home.  Goodness it seems like it will be some time before she jumps this hurdle, I try to encourage her & cheer her on when I get to feed her but my poor baby gets tired! It's hard for babies her size to learn the suck, breath, swallow process.  She'll get it though, hopefully sooner than later! As far as her weight, great news I just found out to go home she only has to be 4 pounds/1800 grams & she is at 1750grams as of this morning so 50grams to go & she's jumped that hurdle!! I have to add our little peanut is just adorable as she fills in more & more....well she was always beautiful it just gets better & better!!! Last night Daddy was looking down at her in her bed sleeping & saying "Wow how big she's gotten"...she has we are PROUD OF YOU GORDA!!!