Pretty In Pink

As of last night, Claire is now up to 3 lbs 4 oz.  She has hit the weight mark so the nurses have started dressing her!  She was SO cute this morning when we walked in and she had on a pink outfit and swaddled in a pink flowered blanket!  As you can tell, the ruffles were my favorite part. :)  The nurse has turned the temperature down in Claire's isolette and she has to prove that she can maintain her body temperature for 3 days plus gain weight those 3 days.  If she passes this test, then she can be moved out of the isolette and into an open bassinet. 

With Claire's apneas, bradys (As and Bs), and drops in her oxygen saturation, the doctor decided to place a nasal cannula under her nose.  They are only giving her room air through the cannula, not oxygen.  They hope this will just aid her in breathing the room air so she doesn't have to work so hard to breathe.  We are hoping the room air will suffice so they don't have to give her oxygen. 

Her bilirubin has decreased from 5.6 to 5.4 without being on the lights or blanket in the past 2-3 days, so that is good.  We pray it will stay low or go down, and not go back up.  She is tired of those lights shining in her face all day and all night! 

Claire is still experiencing the tachypnea (rapid breathing).  At rounds this morning, the doctors thought it was more than likely pulmonary edema (fluid on the lungs), so they ordered a chest x-ray.  The x-ray came back clear - so no fluid on her lungs at this point.  The second thing that could be causing the tachypnea could be infection.  They have done 2 blood and 2 urine cultures as well as administered 2 rounds of antibiotics to be on the safe side.  Both times the cultures didn't grow anything and were negative.  But the doctor said they are only 50%/50%.  So they could possibly order another lab called ABCD (not sure what that is!) to test for infection.  If it's not infection, the 3rd thing they think it could be would be that her PDA valve is closed, so they may open it back up to allow for more pulmonary flow. 

My suggestion was to check the cyst again.  The cyst is enclosed in Claire's liver which is located right under the right lung.  Our common sense opinion says "couldn't the cyst be pushing up on her right lung and causing her some breathing distress???"  So I asked them about possibly doing another ultrasound or something to check the cyst.  After the x-ray came back ok, the ultrasound tech came in and did an US of Claire's liver cysts and abdomen.  The results have not come back from this yet.  It makes me wonder though......  We could tell that the measurements of the cyst looked bigger than when she was first born - they looked like they were closer to the size it was before they aspirated it in utero. 

They may increase Claire's feeds starting tonight if she continues to tolerate them and digest them well. 

The cardiologist came by today while we were there and said Claire's heart sounded good.  Since she is a "tet baby" they cardiologists will accept lower saturation rates than a regular baby.  The regular range is 85-100%, but with Claire, they will accept 75-100%.  If her saturations stay lower, they more than likely will do the heart surgery before Claire goes home.  They would love for her weight to be at least 7-8 lbs before they do the surgery, but they could do it now if they had to. 

As Trent says, it's all wait and see, sit and wait, watch and wait.  Lots of waiting!  Claire was very, very sweet today as she always tries to be.   We all love her so much.  She is the toughest little girl that I know!  We are so extremely proud of our little girl.  Thanks again for all the prayers and concerns.  They are getting us through each day.

Love,

The Scott Family