jUST hANGING aROUND

Sophia has just been hanging out at the Rcnic, adjusting to her new feeding schedules. Yesterday her feeds were consolidated to three hours of feeds over one hour. Today they where consolidated once again to three hours of feeds over 30 minutes. So basically what that means is that she is getting 80ml of formula over 30 minutes. They also upped her calories again to try go get her to gain more weight. She is now up to 28 calories per ml. The doctors and nurses are all very impressed with our little Sophia. We have been told that the average CDH baby takes 3-5 months to recover and she is just over 2 months. As far as bottle feeds go, she is not there yet, but she is making little steps forward every day. It is going to take a lot of work and patience to get her there but she'll get there eventually. I like I have said in a previous blog, she is starting to show interest in her pacifier, but just sucking on a pacifier is very different then sucking on a nipple with formula squirting in her mouth. The nutritionist would like to see her gain a little more weight before we venture back north, but with each day we get closer.

Blogger has been down

We apologize for the lack of a post last night and thank everyone for being understanding and not freaking out due to the lack of a post. The Blogger website has been having issues since 9pm last night, please stayed tuned, we'll post news here again tonight. Everything here is peachy.

In the words of Maggie Simpson

As parents we are amazed on a daily basis by our children. Liam's vocabulary and abilities that seem beyond his years and Sophia with her courageousness, and strength through this whole endeavour. Today she made more steps that really amazed us. She has tolerated another food consolidation. She now gets three hours of feeds over 90 minutes and then her feeds are off for 90. This has caused her for the first time to experience hunger pains. Although I would never wish pain on Sophia, this kind seems good. Her hunger pains have enticed her to start sucking on her pacifier, and not only briefly tonight she sucked on it for over 40 minutes in one hour. This is HUGE! Patrick and I believe that she might have even tried to take a bottle but we are unsure about that because that is something an occupational therapist would have to work with her on. But the fact that she was truly sucking on the pacifier for that long shows tremendous interest. Yesterday she had no interest, today she really wants it. Truly amazing! As Maggie Simpson would say. Suck suck suck

First family photo

Sophia was so excited today, she got to see daddy again today and the timing could not be any more perfect for his arrival. Patrick arrived around 9:30 this morning and was able to see not only Sophia but Liam too. This provided a great opportunity for us to take our first family photo with all four of us. Sophia is doing well. they started consolidating her feeds. She now gets three hours of feeds over two hours and has one hour off. Another change we have been noticing over the last several weeks is that her really dark hair is lightening up. Yes it looks like our little Sophie will be a Blondie as well.

I have to report the word home is casually being thrown around in the Rcnic. We don't have a date yet but the fact that, that word is being mentioned means that it is definitely getting closer. You also have to understand that in the Rcnic close could be a week to a month all depending on how she is doing. It is our hopes that when Maw Maw and Liam travel back to Michigan tomorrow that this was their last trip down visiting and with that in mind we of course had to visit one of our Cincinnati favorites for dinner. I bet you all thought it would be Chipotle now didn't you? Nope not Chipotle but Deweys Pizza and Graters Ice cream. Two things we'll miss when we venture back home, and two places we'll probably visit again sometime on a check up visit.

Spa Day

Sophia had a day at the Spa de rcnic today. She got her first "real" bath in a bath tub. Ok so it is really a plastic bin that they call a tub, and a little one at that. The Rcnic was all out of big tubs, but Sophia did not mind. She just sang...Big baby in a little tub, during the bath. Just before her bath her nurse removed her pic line, which is another big step. For those of you who don't remember the pic line was a tiny tube that ran through her veins to her heart that carried her nutrition (TPN and lipids). With her TPN and Lipids turned off she no longer needed the pic line. For the bath we also got to remove the monitoring sensors and capped off her g-tube. This was the first time since her birth that she has been completely wireless and let me tell ya the wireless model is a lot more mobile. I got to hold her completely wireless while her nurse did a bed change. I thought to myself while holding her, wow I could take her for a walk she is not tethered anymore. Although we did not take a walk I did spin around once just because we could.
Earlier in the day she did have an opportunity to try feeds again, she did about 5 tastes and gagged. While talking to the therapists they related how she might be feeling to... being nauseous all the time and then having some one offer you food. How many of us would like to eat if we felt nauseous all of the time? So although she did not take a volume of feeds she did try and that's baby steps forward. The doctors also discontinued her Adavan today and are once again upping her caloric intakefrom 24-26 calories per ml to help her grow.

She had a big day with the feeds and bath so shortly after she took a snooze.

Big bright eyes

Sophia reached full feeds through her g-tube today, which is one of the bigger steps towards going home. She is definitely getting closer but still has a few things she needs to do before we venture that way. The Doctors have increased her caloric intake from 20 to 24 calories per ml to try to get her to grow more along with getting her to have more energy. They also reduced her adavan medicine by 1/2 dose again and she should be off of it fully in the next couple of days. Her feeds will also start being consolidated. The doctors are also going to try to shut off her feeds for an hour an\then try to feel her some by a bottle. The hopes is that stopping the feeds will allow her tummy to empty thus giving her a hungry feeling and thus giving her a desire to try eating orally. We really hope that, that will be the case, but we won't be disappointed if it doesn't work on the first try. We all know the ol' saying that you can lead a horse to water but you can't make him drink.

Almost there

Sophia feeds continue to climb. She is now at 24ml/hr and is only 3ml/hr away from full feeds. She should be there by tomorrow evening. Once at full feeds they will start consolidating feeds into feeding periods. She will have feeds 2hours on then 1 hour off then progress to 1 hour on and two hours off. This will challenge her tummy with larger volumes. Now that she is at 24ml/hr they have turned off her extra fluids that flowed through her pic line. These fluids were the TPN and lipids. The doctors have also reduced her Adavan that has been used to help keep her calm while transitioning off of her pain meds. Hopefully that will be completely gone soon as well.

The Occupational therapist stopped by and looked at Sophia's hands and wrists. She determined that Sophia needed bigger longer braces to help support Sophia's wrists in a more neutral position. You can see in the picture that she holds her hands a little differently, the braces are working to correct that.