100th post!

Sophia would like to say hello and tell you about her fun day today. She has had several awake periods and during those times she has taken allot of interest in her mobile and her fairy doll. She was actually reaching towards the fairy and batting at her little rattle purse. It truly amazed the nursing staff.
This evening when I visited her, her feeds were up to 20ml/hr. By Wednesday they believe she will be up to full feeds (27ml/hr). At that point they will start to consolidate feeds into a schedule instead of continuous feeds like she is getting now.

Two month celebration

Wow, we must be having a lot of fun because time has certainly flown by...Has our little Sophia really been around two months? And what an eventful and amazing two months it has been.

This morning four friends from Michigan stopped in for a visit. They were so excited to hear that they could actually meet Sophia and were amazed with how big she is getting and how healthy she looks. They also got a tour of the Ronald McDonald house and stopped by our favorite neighborhood Chipotle.

Sophia was also visited by her Grandma Huber and Aunt Vicky. They got to see how Sophia gets tastes of formula before they headed back to Michigan.

Sophia seemed to be feeling better today. Her heart rate was back down to her more normal range and she woke all four times I visited today. She was able to taste feeds two of the four times. Each time she tried a little more then the previous time. She is up to about 12 tastes/drops during an awake period. While that doesn't sound like much, it is wonderful that she is making the little steps forward. She is also up to 16ml/hr on her feeds. Each day she makes more little strides forward to a journey home.

Thanks to all once again for keeping her in your hearts, thoughts and prayers through this and in the future.

Mark, Ashley, Ronald, Jen and Dennis

calm day

Sophia had another calm day today. Rounds were even shorter today then yesterday. They basically just stopped and discussed her vitals. This afternoon she had surprise visitors. Aunt Vicky and Patrick's mom came into town to visit. They spent over an hour visiting with Sophia and also got to visit with Liam at the Ronald McDonald house. Liam gave them a tour. By 8pm tonight Sophia was up to 12ml/hour on feeds and is still doing well tolerating them. We have noticed her heart rate is a little higher then it has been but it could be her getting use to a feeds. Maw Maw and Liam also dropped in the unit to visit Sophia and found out that she was up 1 1/2 ounces in weight. She is now nine pounds 15 ounces.

quick rounds

When you have a little one in the Rcnic you can tell how well your baby is doing by how quick rounds are. For those of you unfamiliar with what rounds are...they are when the doctors, nurses, nutritionists etc... gather around the patients bedside and talk about how the patient is doing. They discuss the patients vitals, test results if any, blood gas numbers, what to change, what tests the patient needs in the future just to name a few. When the patient is not doing great the rounds on the patient can be a little time consuming when the patient is doing well as Sophia is they can be really quick. Almost so quick that it feels awkward because it seems like there should be more to say...but there isn't. Today the only change was to the medicine that helps transition her off her pain meds. They lowered it. They also had her get her two months shots, which she did very good with. The feeds remained the same at 1ml up per 6 hours. Other then that there was not much else for the doctors to say. Today the tastes went well, Sophia sucked on a nipple a little and had about seven to ten little sips (drops). Every time I go in and she is awake I am to work on tastes with her. If she keeps showing interest she might be able to take a small volume by mouth soon.

First taste

This morning Sophia had her first taste of food. Since she has never had a bottle we started with baby steps. The Speech theripist had me dip Sophia's Pacifire in some formula I put it close to her nose so she could smell it and then placed it on her lips. The formula dripped on to her lips, she licked it, made a face then kind of gagged. She then got the hiccups and proceeded to fall asleep. Gagging is not uncommon, it just shows us that getting her to take a bottle is going to be a slow process. The Speech therapist visited Sophia's bedside three other times to try again but she was contently sleeping each visit, so we'll try a taste again tomorrow. The doctors upped her g-tube feeds again today as well, her feeds are now increasing 1ml every 6 hours and as of 8pm she was up to 5 ml per hour. The doctors also said that I should learn how to clean her g-tube and give her, her meds. We are also going to start trying to establish a daily routine for her. This evening Maw Maw and Liam visited with Sophia for a while. She snoozed the whole time. While visiting Liam likes to play with her mobile and also color the coloring sheets that the family life specialist leaves behind for him.

Feeds and fun

Sophia had another good day. They have upped her g-tube feeds again to 2 ml per hour and will increase them by 1 ml every 12 hours. She will also get to start working with a bottle with the therapists. They will be able to give her the amount of feeds orally that she is getting via g-tube. So if her feeds are up to 2ml per hour on the g-tube. They can try to get her to eat 2 ml by bottle. As the g-tube feeds increase so will the bottle feeds, that is if she will take them orally. Earlier on I had spoken about oral aversions. Since birth Sophia's mouth had been messed with she might have problems taking the bottle, and we have also learned that some babies never take a bottle due to the aversions. We are really hopeful since she is sucking on a pacifier from time to time that she will eventually take to the bottle and grow out of the g-tube feedings.

Today Liam and maw maw stopped up to visit Sophia. There was a procedure on another patient so they just got to say hello and we had to leave, so we decided to go to the Cincinnati Museum Center. Now I am not a museum buff but this place was really neat. We spent around 5 hours there. The lower level was a children's museum it was so cool in there that Adults would even think it was fun. There was a large crane that you filled it's bucket with rubber rocks and put them in a dump truck, a Grocery store, a diner, a ball area (but not your typical pit), a huge water table and a large forest area that he could climb around in just to name a few. The Cincinnati history museum had a huge train diorama of Cincinnati that Liam adored. The natural history museum had a cave and ice cave to walk through. The cave really felt like an actual cave! All three Museums were in the old Art Deco Train station which made it extra cool.

Teeth?

Yesterday I has mentioned that Sophia was a little fussier then usual, Most people would think that maybe her incision was still tender or that she was just plain tired of being messed with all of the time. Today I think that I found a source of irritation for her. When she was fussing I noticed two small white spots on her lower gums. Upon closer examination it appears that she has two teeth coming in. Who would have thought? I guess she thought she needed them for her feeds. Speaking of which they slowly started feeds this afternoon. Our little tootsie is on her way.

Today Sophia also made her movie debut, her hair was a little messy, but she was wide awake for the camera man. It was a really neat experience for both of us.