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.