The new normal

Wednesday, March 31, 2010 7:56 AM, MDT

We have had a great couple of days!! We've had several praises from our last two appointments! Thank you all for praying with us.

Monday morning we made it to Parker nice and early. The Children's Hospital facility in Parker Adventist is really nice. We were the only ones in the waiting area first thing in the morning, and headed back with the audiologist quickly. The big girls brought along their gameboys and a few books, and were so good during the almost 2 hour long diagnostic. Why didn't I think about the fact that it was going to take so long?! But they were so well behaved, and I was really pleased. The audiologist was able to just do the newborn screen over again that Cassidy had previously not passed in the hospital. Cassidy passed it completely! No signs of hearing loss at all! She will be followed as she grows because of the chance of hearing loss that comes with DiGeorge. We don't have to go back again until Cassidy is between 9 and 12 months, when they will do a developmental hearing assessment. But right now her ears have a clean bill of health!

We decided to make the most of our day up in Denver, and took a trip to The Giggling Green Bean, our "local" cloth diaper shop and baby boutique. I was completely enchanted by the shop! I wish we had one in the Springs!! I bought a bunch of tiny diapers to fit our teeny little miracle. They are SO cute! The plan is to take some pictures today, so I will try to get those posted sometime today. While we were in the diaper shop, I weighed Cassidy and she was around 2200g! That was with her diaper on, and on a different scale, so I wasn't holding my breath that she'd actually gained that much. But it was good to see her moving in the right direction!

Tuesday morning was her official weight check at the pediatrician. Her official weight for the week was 2250g! That is 4lbs 15.5 oz!! She had gained an ounce a day since a week ago Saturday! When she had only been gaining a few grams a day, we were happy when she gained an ounce in a week. A half an ounce a day is considered adequate growth, and she doubled that! We also had discontinued the formula additive we'd been putting in her breastmilk because she was getting really gassy, fussy, and having very nasty smelling bowel movements. She was also spitting up a lot, violently through her nose. It was so stressful feeding her every single feeding. Since we stopped adding the formula, she has significantly decreased how much she spits up, had much less gassiness and fussiness, and has increased the amount of milk she will take each feeding. Before we were measuring in mLs, she'd take 30 mLs to 40 mLs each feed, and getting her to take 40 was a struggle. Now she is consistently taking closer to 60mLs, or 2 ounces! And it isn't a fight trying to get the last 20 mLs into her! Also, her O2 sats are right where she should be while she is eating and at rest. Good news all around. Oh, and at her current rate of growth, she should be 5 pounds this morning!!!

While we were up in Denver, we also stopped by the Hammond's Candy factory and did the tour. I was thinking that on a Monday morning, it would be pretty quiet and not too germy. And I knew the big girls would really enjoy seeing the factory at work. Silly me, I didn't think about the fact that is was Spring Break! There were quite a few people on the tour with us. I had Cassidy in the Baby K'tan sling, which keeps her covered and close to my chest, so I didn't have anyone trying to touch her. We also loaded up on the purell! I am afraid I am going to turn the big girls into complete germophobes. I already had them trained that kid play areas are huge germ factories, but now we look at every place we go as a germ factory. The factory tour was short and perfect. We really enjoyed seeing the people making giant suckers and looking at all the old machinery. We will definitely go back again because each time we will see different candies being made. We've been enjoying the candies that we bought and our free samples as well. Yum!

Yesterday, Liberty also had speech and occupational therapy. We shopped a little in between. It was a busy, busy day.

Today we are going to stay home, get lots of schoolwork done, and try to get some rest!

Please pray that as Cassidy grows, her lungs and heart continue to function well. We know that surgery is in our future, but the more she grows and develops, the better off she will be. Pray that she doesn't slip into congestive heart failure and pulmonary hypertension. Also, pray for our big girls. They are very aware of the fact that Cassidy needs surgery, and they are showing some signs of being stressed about it. They've been having some bad dreams, and have been fighting with each other and with us. Pray that Kevin and I will have wisdom and patience in the situation, that we will know how best to deal with their stress. Also, we are applying for financial help with Social Security, the state, and Medicaid. Pray for me, that I fill out all the paperwork correctly, and that we get approved!