Monday June 22, 2009 - Medical Update

Megan's weight is 2298g, 5 LB 1.1 OZ. Her feed is now 40 mls over 30 mins, still getting the 30 calorie formula. Megan passed her hearing exam. Her state screenings all came back normal. They dropped her sodium supplement because her level is closer to where it should be. She is still on caffeine, sodium chloride and aldactazide. Her white count is normal and her bone marrow has started producing it own blood cells. ( I didn't realize when you give a baby blood the bone marrow says "hey, I don't have to work anymore she's getting blood elsewhere" and shuts down) So making blood is a very good thing. Her head is still clean (no brain bleeds) and her labs and blood gases came back perfect. She is still putting on weight which is most important.

Olivia's weight is 2568, 5 LB 10.6 OZ. She finally stopped those massive increases in fluid retantion. Her feed is now 44 mls over 45 mins. Olivia failed her hearing exam in her left ear, her right passed. It could be that she was laying on that side or because of all the tubes she couldn't hear as well. The test is listed as inconclusive and she will be retested before she comes home. Her state screenings were inconclusive because it was done so close to the last time she received blood nd will also be redone. She is still on caffiene, sodium chloride (but quantity lessened), potassium chloride and they restarted her on the aldactazide. Her white count is normal and her bone marrow is working. Her head is still clean. She still has both her PDA and her ASD and will continue care with a cardiologist once she comes home. Her heart is otherwise normal. Her labs, blood gases and electrolytes all came back perfect. She does have reflux though (Megan may have it but a more mild case) and we will try everything we can to not have to put them on meds for it.

Now that the girls are 36 weeks gestational age they have been officially diagnosed with BPD or Chronic Lung Disease. The nurses compare it to emphysema in adults but the girls can outgrow it because the lungs continue to develop until approx age 7.

The girls cannot come home on the type of feeding tubes they have now. They curently have a tube down their throats into their stomachs. If they do not learn how to bottle feed they will have to have "G" tubes. It is a tube inserted into the stomach through the abdomen. A G-tube and be used for up to 6 months. I believe the term used to describe this type of feeding is "Bolus." We will use large syringes to insert the food directly into their stomachs.

It is time for the girls 2 month vaccines. Vaccines in preemies can cause setbacks in breathing from having to go back on C-Pap to possibly the ventilator. They will give the girls pain medication for shot time and treat them with Tylenol for the next 24 hours.

I pulled the girls going home outfits out of the closet and found they have outgrown them. I know I should be happy they are so big and doing well but I am so sad they are still in the hospital.
Please pray for my little girls. I have been crying for days now. All of this is so hard to handle. I know in the end I will have 2 perfect little angels but the road is so long from here and I am trying to take each day as it comes.