Happy Five Months Sophia!

Today marks another milestone for Sophia. Sophia has now been home from Cincinnati just as long as she stayed in the RCNIC in Cincinnati and I think she has loved every moment home despite having acid reflux/getting sick issues. This weekend she dressed to the hilt as a fairy and attended the Michigan Renaissance Festival. She was a huge hit, steeling the show once again. She was even noticed by the Queen herself and she received a very touching blessing from the Queen. It was almost like the Queen sensed that Sophia had been through a lot. Sophia also enjoyed watching her brother eat a huge turkey leg at the "REN" fair. It was so big that mommy and daddy had to help and they were all full as well before it was all gone. Maw Maw and Paw Paw also went to the fair, it was really warm but we all had a really good time.

Liam and Sophia also helped build their new Playscape in the backyard the past two weekends. Although Sophia is too little for most of it now she'll enjoy it a lot when she is older.

Health wise Sophia is doing well. Last week she weighed in at 14.8. Her Prevacid has been upped again to a 15mg tab a day (two 1/2 tab doses). It is our hopes that the Prevacid will help her stop throwing up. She is seeming to do better as she gets used to the new dosage.

She still is not eating by mouth. She has no interest in the bottle and really does not have much interest in rice cereal off a spoon but we keep trying. On a daily basis I remember back to when one of our wonderful nurses said eating is the hardest part. Although for most of us eating seems simple... eating is one of the most complex things we as humans do. Sophia will indeed get there it will just take a little time.

Bye bye for now

Has it really been a month?

It is hard to believe that it has been a month since my last post. So much has happened and and both Liam and Sophia have had to once again get use to new things. Lets see where do we start? Hmm how about where I left off. On July 9th she got her malencot g-tube changed to a button or peg. We have learned a lot in that month about how to care for the button and how to success fully vent her. Since we have been home from Cincy Sophia has had a lot of trouble with her feedings. She has had days where she throws up with every feeding once if not twice. This really was a shock to us because they told us with the Nissen that she could not throw up. She has also been refluxing as well, so she is back on her anti reflux medicine Prevacid.She seems to be tolerating her feeds a little better and there are some times where she can get through a whole feed with out throwing up, that is if we vent her appropriately. When I say venting I mean attaching a tube to her button and placing a syringe on it to allow gas and or formula to be pushed back out. We routinely say she has a built in Jacuzzi. She is currently getting 90 ml of Formula every 3 hours, which is only 5ml more then she came home on, We had to drop her formula back to 75 shortly after we came home, to help her tolerate the feeds and then to 65ML when she had her g-tube switched. We have been working her back up to the appropriate amount of formula for her age and weight, We are supposed to increase her formula intake by 5ml a week. As far as Oral feedings go she is some times willing to accept the bottle in her mouth and will occasionally suck on it briefly. She simply seems to have a hard time with the Suck swallow breath rhythm. Although she is not eating via bottle she is showing positive signs with oral stimulation. She routinely sucks on her hands to self sooth her self, she will also some times accept two different pacifiers (the soothie and the Nuk). She has also done a few tastes of Rice cereal. She doesn't gobble it up but she has swallowed some of it. She is now able to support her head and sits up with support. She is trying really hard to do good with tummy time although that too makes her throw up from time to time. All of her therapists stress the importance of tummy time. Sophia is also getting active she can lay on the floor and spin herself in a circle and she now interacts with toys. She really is a sweet baby, she really only cries if her tummy is bothering her. Sophia has gotten to do allot of neat things in the last month as well, she has listened to her favorite band, Brett Mitchell and the Giant Ghost twice in outdoor concerts since she came home, she watched her brother play at chucky cheeses and kokomos, she;s had stroller rides on the rail trail while her brother biked and also watched him splash around at the local splash pad. Sophia has also gotten to see, Aunt Pat and Aunt Sarah, Great Grandma Corky and Great Grandma Huber, She attended the Huber family reunion and got to meet Aunt Sarah's brothers and dad, she;s hung out with Uncle Scot, Aunt Sherri and Max not to mention that she is really getting to know Maw Maw and Paw Paw. Sophia is for the first time and Liam is once again, spending their Days at Maw Maw a Paw Paw's house because I had to return to work. I went back on July 26th. It has been an adjustment for everyone, and although I wish I could be there taking care of the kids instead of at work I could not think of a better place for them. Sophia still averages 3-4 appointments a week. She has in home, nurse and speech therapy visits. She goes to a physical therapist once a week and usually sees her Pediatrician once a month along with the Cardiologist once a month. She also attended the High Risk Clinic at Covenant in Saginaw in July, She met with a Physical Therapist, a nutritionist, and a neo-natologist. Overall they said she was doing well and also gave me a few areas to work on such as retraining her tummy muscles. She is still doing very very well for CDH baby and has come a long way and the road to eating orally is a long one but we have every faith in her that she'll get there.