Tuesday, August 2, 2011

Haven't updated in a while...

....but as Scarlette's heart surgery approaches I will be updating on here more and more since we do not have any social networking site access in the hospital. Before Scarlette's heart surgery on August 18, her pediatrician and I felt it would be a good idea to quickly check in with most of her specialists just to get a before surgery feel on how she's doing, make sure she's clear for surgery and track any progression/regression after the surgery. This meant that I would have to see: urology, audiology, GI, nutrition, gen surgery, opthamology and Cleft palate clinic (plastic surgery, orthodontics, speech pathology/feeding and ENT all in ONE day!). Then I would need to go see her pediatrician to fill him in on what everyone has said. All of this before July 17 which is her pre-op day and is a full day at Children's. Well, surprisingly I actually got EVERYTHING scheduled except opthamology b/c they are in the middle of moving hospitals, and I even managed to squeeze in Savannah's 28 week appt and a teeth cleaning for myself! Pat on the back for me! LOL

So far we have seen the first 3, we see Dr. Safford, her surgeon, today and cleft palate clinic tomorrow. Next week we have a little break and I only have to go to the OB, and then surgery week begins and she has an appt (at least one) every day until her surgery. August is not going to be an easy month!

Thank goodness we had a blast in July! We got to go to California and visit with my entire family, as well as Mitch's mom, brother and sister in law. We also went to Vegas and had an AMAZING trip and Mitch's dad's side of his family all got to meet Scarlette for the first time. It was a whirlwind of a trip but we had so much fun!

Scarlette has been having many feeding issues over the past few months, and we "think" we finally found the solution. Scarlette is fed by a pump that we can adjust the rate of her milk. So for example, we can put in 4 oz of milk and tell it to give her 100 mL per hour, or we can put in 4 oz and set it to give her 50 mL per hour. Previously we had been giving her 5 feeds per day of 4 oz at 125 mL per hour, so it was approximately 5 1-hour feeds. She was vomiting up her milk and getting extremely gassy at least 2-3 times per day and we were struggling with feeding her and becoming very discouraged. We had learned to slow her feeds down at night and when that seemed to work we figured, why not slow them down all the time? At first we did this with her feeds 5x a day but we quickly realized she was on the pump ALL the time and it was not time efficient. So we decided to give her a volume of 6 1/2 oz 4x a day for 90 mL per hour (4 2-hour feeds). VOILA! She has been vomit/choking/retching free for over a week now! The GI dr. said yesterday that if she starts up again we may need to experiment with some motility drugs, as her gut motility may be slower than average, but for now we are happy with no medicinal intervention!

That is our exciting news for now, continued prayers for Scarlette's upcoming open heart surgery are appreciated and needed. I will go into detail about what they will be doing exactly during her surgery as it gets a little closer!


the Skrove's

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