Monday, August 3, 2009

Bless her little heart

What a day. After (once again) a rough night with little David screaming every time we put him down (I plan to discuss this fun fact with the pediatrician on Wednsday because if you ask me, he is showing all of the clinical signs of baby reflux - crying around and during feedings, slow feeding, vomiting infrequently - but it is not just a spit up when it happens), Brent took the day off to help get the babies to their appointments. We went first to the ophthalmologist for a re-check then to the cardiologist.

The eye specialist cleared both babies for 3 to 4 months at which point we will travel to New Orleans to his clinic there for a complete check up. If they do well then, we will see that doctor yearly. He will look for any vision impairments and will prescribe correction accordingly (i.e. glasses). But the ROP disease is stopped and there is little to no risk for recurrence from what we understand. So yay! One thing down.

The cardiologist appointment went well. The babies actually slept through their EKG's and ultrasounds. Of course Mary Louise pooped in the middle of her appointment which seems to be her thing to do there even though I change everyone right before we walk in.

David's heart is developing well. The doctor said he wasn't too concerned with him as his PFO is much more closed than Mary Louise's and he is asymptomatic at this point. Hsi pulmonary pressures were also normal.

Mary Louise on the other hand has developed 2 issues. The first, her PFO (patent foramen ovale) is still too open and has not decreased since last week. Second, her pulmonary pressure has increased significantly since last week's appointment. Consequently, the doctor has decided to put her on a low flow of oxygen 24 hours a day for the time being. He estimated at least a month of 24 hour flow but she will be followed closely (aka - she will have a follow-up appointment every 2 weeks or so). The hope is that the oxygen along with the low dose of lasix she started last week will help to further reduce the work load on her heart, fluid and pressure in her lungs and allow her to feed more efficiently thereby allowing her to gain weight appropriately. (She has stayed around 5 pounds for almost a week - this is NOT supposed to happen and is especially alarming for a baby so small).

Anyhow, that's the update. Both babies are quiet right now so I'd better take advantage and get some rest myself.

XO, Heather


  1. So glad to hear that their eye issues seem to be resolved.
    As for the reflux issue, we know very well what that is like. Hayden was on Prevacid from 2 weeks until he was 1. Oh and it helped tremendously. He used to scream, arch his back and trow back his head, from which I understand is a classic sign of reflux. The good news is if it is reflux they can give him meds to help with it.
    I will keep praying for all of you and I will pray hard for Mary Louise's heart to heal itself and her weight gain to continue.
    I will also pray for sleep for mom and dad. I know you both need it. I know one baby is exhausting and you have 2 I can't imagine.

  2. Hi, I am Jimmies Mom I don't know if you have checked out our blog. But Jimmie was a 24 weeker and is now 2 months adjusted. We thought we were dealing with the reflux thing too. He was on Zantac and Bethanchol for about two weeks and it did nothing. When his feeding started to go down hill was when they discontinued our oxygen use at home. I begged our pediatrician to order us some oxygen to see if that would help. (Jimmie was always sating just fine) He said sure we can try it. Lo and behold it has helped tremendously. I have discontinued all of his meds and he is eating much better now. I put him on the oxygen when he eats and at night. If you want more details check out the blog or email me. I am so glad to see your babies home. We were in the NICU for 88 days. Living with an Aunt so we could be closer.
    Blessings, Rachael

  3. Ah sweet Zantac - Kirin's first love. Hopefully this too will be resolved.