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.

Friday was a long day

Sophia is doing well after a long day on Friday. She now has a button style g-tube. But let me tell ya waiting for surgery is about as painful as waiting for paint to dry and water to boil. Especially when you are at a new hospital with doctors and nurses you don't know. Everything went very well and all of the people we encountered were very nice, but we definitely missed Cincinnati Children's. Prep for the surgery started at 4:30 am with Sophia's last feeding before surgery. The feeding ended at 5:30. We gave her a bath at 7 a.m. grabbed a quick bite to eat and headed to Saginaw. We arrived right on time at 10 a.m. Her surgery was scheduled for 11:15 but we did not get in there until around 12:15-12:30. Her surgery was literally 15 minutes or less but with recovery in post op and in a regular recovery room we did not get out until about 2 p.m. She got her first feeding at 3 p.m. She was pretty tired from the sedation medicine but did really well with the whole thing. The nurses also could not believe what a wonderful disposition she has and that she had such a rough start, because she looks so healthy.

Patrick and I were really excited about the new g-tube thinking that it would solve all of our woes with the malencot. What we learned is that there was quite a difference between the two and that we had a lot to learn. With three days past since surgery we have come to like the new set up but we have not worked all of the kinks out yet. Getting the new tube was kind of like getting a new car. You like it but you are not sure about all of the new features and you are nervous about breaking things. I once again have to reiterate to myself that Feeding is the hardest part. Sophia has been making baby steps with oral feeds, she has taken around 6ml in drops from a bottle, is accepting positive touches around her mouth and really sucks on the pacifier at night. We had our first visit with the Speech Therapist today and we showed her how we have been working with Sophia and she said to keep up the good work and also gave us some additional tips. Tomorrow we go to Physical Therapy (PT) and the home health nurse will stop in. Wed and Thurs are Dr appt free and Friday we go back to PT.

Sophia also got to meet amd spend time with her Auntie Jill and Unclie Chuck from Minnesota this weekend. It was really nice to see them and have them stop in while on vacation celebrating their 40th wedding anniversary.

g-tube

On Tuesday we went to the pediatric surgeon in Saginaw to have Sophia's G-tube swapped out (from a monocot(rubberized tube) to a button style). When we left Cincy we were told it was an easy fast 10-15 minute thing and that it could be done in the office. We found out that, that was not quite the case. We met with the Surgeon and he said that the g-tube swap needed to be done in the O.R. as an out patient surgery. Although the thought of her going back in an O.R. again rattled my cage a little it really is not a big deal. To make the G-tube exchange as easy as possible on Sophia they want to sedate her so she doesn't feel any pain. The surgeon said the anesthetic is like what they use when you have dental surgery. The procedure is scheduled for this Friday, July 9 at 11:30a.m.. We are to arrive at Covenant Medical Center in Saginaw at 9:30a.m. The procedure itself should take no more then 30 minutes.

Why are we having the tube swapped out? Well if you have ever used a rubber band time and time again you find out that the elasticity eventually wears out. Same is true with a monocot. The end that we use to attache her feeding syringe to is very rapidly loosing it's elasticity. Why is that a problem? With the syringe in the tube loosely you can easily have the syringe fall out of the tube while feeding Sophia. This causes her to loose valuable calories and also makes a huge mess. we currently have tape and rubber bands assisting with keeping the syringe and monocot g-tube together while feeding. We have also had the stopper pop out when she pushes against it also causing her to loose needed calories and also making quite a mess.

Other then that Sophia is doing really well, she continues to grow and has been enjoying many new things. Today she even went to her first concert at Dow Gardens and listened to Brett Mitchell (our favorite musician). She is also smiling more and more and is becoming increasingly active. She now grabs at her burp rag and rubs it on her face and also has really started sucking on her hands in the evening.

I'll give you all an update on the g-tube swap in the coming days.

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.