Three months

When we left for Cincinnati in March we kept saying that our goal was to be home with Sophia in three months. Little did we know then that our little fighter would make it home in about 2 1/2 months. We truly are blessed with this little one, while down in Cincinnati we saw and heard a lot and know that with CDH that some make it and some don't and we saw that first hand. Sophia was the first in her class to graduate from the RCNIC. There were a few CDH babies that were born before her that will remain at the RCNIC for months yet. We truly wish them a speedy recovery. Recently I visited the website designed to help people learn and cope with the CDH Diagnosis. On the website it said that CDH is as common as cystic fibrosis and that one CDH'er is born every ten minutes. They also reported that since 2000 over a quarter of a million babies have have died from CDH. With all of this information in mind we know that we are truely blessed to have our little one and are enjoying every minute we have with her. Monday we went to the Cardiologist for a check up and found out that her pulmonary hypertension is continuing to decrease. We also have a visiting nurse who has informed us that Sophia is growing well, she is 24in long and 11lbs 13oz. Every day we work on her oral aversion...it is a very slow process...but she'll get there. She has surprised us so far and we are sure she will continue to do so.

she's a growing

I am happy to report that Sophia is doing really well at home. We are all getting use to being here and things are starting to feel a little more normal...although I keep having this thought in my head that we should keep her cooped up because she is sick. But that is simply not the case, Sophia is not sick, in fact she really is thriving she is up to 11lbs 4oz and is smiling more each and every day. I think because she does have the g-tube and is fed through it my mind says she is sick, I keep telling myself that she is not sick she just eats differently...and for that matter we are working each and every day to slowly teach her how to eat the more typical way. I cant remember now if I explained what exactly the g-tube is. So here it goes. Her g-tube also called a malencot is a rubberized tube that goes through her skin to her stomach. Six weeks after surgery it should be fully healed and we will be heading to a surgeon in Saginaw MI to have the malencot switched out to one called a button g-tube. This is not a OR surgery, it can simply be done in the office and should take no more then 10-20 minutes from gathering supplies to completion. The button will be a little easier to hide under clothes. when she gets to the point that she doesn't need the g-tube anymore they will simply take it out and cover the small hole with gauze until it heals. The hole is very much like an ear piercing when you have earrings in all the time the holes stay open, when you don't wear them any more they close shut. Sophia is also going to Physical therapy to help with tight muscles in her neck which will help her turn her head from side to side and also could help with eating. She also has a home health nurse making visits on a weekly basis, she sees the cardiologist on June 28 and the surgeon on July 6. She has made more strides on eating as well she has taken as much as 6ml by mouth and today actually tried to suck on a bottle nipple.
To allow our family to have more fun this summer, I very recently sold my 73VW thing and used the funds to purchase a pop up camper. We can have lots of safe adventures in the new camper and we don't have to worry about the car seats not being installed correctly in the Thing.

Wow the world is a colorfull place

As you all can probably imagine Sophia has had a very busy couple of days. She has visited with her great grandma Dorothy, Aunt Sarah and uncle Kevin, Maw maw and Paw Paw just to name a few. She has had her first in home nurse visit on Saturday and had her first Doctors visit today. Both were very impressed with how she is doing. Sophia is now almost 10lbs 14oz and 23 inches long. Taking care of her 24/7 is a new and interesting challenge but we think were up to the test. Liam is also doing well with having her home, he gets a little more comfortable every day. Today he even wanted to help feed her. We let him hold her bottle of formula before we pored it in her syringe for her g-tube. I also realized that I should get a calendar today for all of her appointments. Sophia looks around the world with awe and amazement...it is really fun to watch.

First day at home in Michigan

Sophia had a huge day yesterday! We decided to head home after Sophia's discharge. Knowing that the ride was usually six hours and expecting eight. Leaving Cincinnati was wonderful and sad at the same time. Wonderful to know that Sophia is doing well enough to come home and that we get to see all of our family and friends here. Sad because we will really miss all of the wonderful people we met while down there. N-e-ways you all come here to hear about Sophia so.... We left Cincinnati around 12:45 after being discharged from the Hospital and checking out of the Ronald McDonald House. Our First stop was North of Dayton around 2 p.m. for Sophia's first feeding. We tried the pump for the first time, it seemed that there must have been a little air in the lines because she got fussy and I had to vent her g-tube and make another stop for her less then a 1/2 hour after we stopped. Sophia did really well for the long car ride. we wound up making two other stops for her making our trip around 9 hours.Needless to say I am Glad I wrote the blog the night before and had it automatically post while we were driving home because we were all two tired to blog when we got home. We stayed with my mom and dad for the night...It was easier then trying to go directly home and unpack, it also got us to Liam sooner. He was ecstatic to see us. Maw maw and paw paw loved seeing Sophia and paw paw got her to sleep. she did really well through the night, she slept well...I slept about 3 hours...
This morning we had a yummy breakfast and headed home to clean the house and unpack. let me tell you i am glad we cordoned off the dogs in one end of the house...I couldn't Imagine cleaning the entire house the way I have had to clean the end they were cooped in. Sophia was introduced to her room and really seems to like it. It is really neat watching her absorb the world around her. She sits looking around truly fascinated. Sorry there is no pict tonight I took picts today but I don't know where the camera is right now and I am too tired to look. I'll keep you all posted on Sophia's continuing recovery very often...it might not be every night though...sleep is precious. Thanks again everyone..Without all of your support, care, thoughts and prayers Sophia would not be here doing as well as she is!

Surprise!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

We can't thank everyone enough for following us through this journey. We have recieved so much support from all of you. You have all helped us though this journey in your own ways, whether your a silent follower, a volunteer who made and served us dinner, someone who sent care packages, a worker at children's or the McDonald house or someone who came down and visited, you have all helped us make it throught this sainly... And so I am happy to report that Sophia has decided that it is time to venture back to Michigan.

We'll try to continue to update the blog to let you know how things continue to go as offen as we can, although it might not be on an everyday basis as it has since our hands will be full with taking care of our two wonderful little ones.

First Stroller Ride

Child life stopped by today and asked if Sophia could play. We of course said yes and so, Sophia got to ride in a stroller to the play room. She really seemed to like the ride and really liked playing in front of the mirror in the play room as well. After we played for a while she rode back to her bed in the RCNIC. Rounds were short again today and no changes were made. They are all so impressed with Sophia and all say she looks so good. The speech therapist also worked on feeds with Sophia today as well. Sophia tool 1.4 ml in drips on her pacifier. Each day she does a little more. With how well she is doing we are really starting to think about how hard it will be when we get to leave. There are so many wonderful people who have taken care of Sophia who have become our friends not to mention all of the wonderful staff and volunteers at the Ronald Mcdonald House. Although when the time comes it will be hard to say our see ya laters ,it will be nice to get home to all of our wonderful family and friends.

Sleeping Beauty

All is well in Sophia land. The Doctors are still doing speedy rounds and are extremely happy with Sophia's progress. Today they took her to Bolus feeds.This means that her foods are not delivered to her through a pump they are giving to her though a large syringe and are gravity fed. the higher you hold the syringe the faster the feeds go in her belly. Bolus feeds condenses her feeds to a 15-20 minute range. Both Patrick and I fed her for the first time today via bolus feeds. Her caloric intake is still at 28 calories per/ml and the only medicine she is on is the one for pulmonary hypertension. She is also taking baby steps forward with oral skills. She is seeming to like her pacifier more and is now occasionally tolerating drips of formula down the pacifier to her mouth. She actually took about 1/2 a ml this way today. Although it doesn't sound like much for Sophia it is another big leap. Today she also started holding onto her "wubb a nub" pacifier. With all of these steps forward, we are pretty sure that we'll be heading home before she is 3 months old.

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.