Just when you think your in the clear

In January of this year we once again traveled to Cincinatti Children’s for Sophia’s check up. Something we greatly look forward to... we get to see the Doctors that have gotten Sophia to this point and get to stay in our home away from home... the Ronald McDonald House. This trip was different though... at the end of the check up we heard words we never expected. The cartiology team told us that not only was Sophia doing well... but they also realeasef her from needing more check ups there.  It was wonderful news... and to the same time... it was difficult to have our connection with this great place severed.  We have been so blessed in being able to have All of the staff at Cincinatti Children’s and the Ronald McDonald House help us though Sophia’s journey. Coming back and visiting is something we will truly miss. Don’t get me wrong, we feel totally blessed that Sophia is doing spectacular... it’s just a really special place in our hearts.

Despite the great news and release in January...July 2018 marked a scary return to hospitals.  Sophia wound up with a bowl blockage. We went to our local hospital and was shipped odd to U of M’s Mott Children’s Hospital. The experience was very scary. Sophia bravely faced orrible pain and a very uncomfortable NG tube.  We had a 5 day stay but luckily the blockage started to work through without surgery!  It was several days of thinking just when we thought she was in the clear... she would nd up in the hospital again.  CDH May have been fixed.. but the journey continues.

5 years since we left Cincy

It has been 5 years since we came home from the Hospital with Sophia. Things these days are quite normal compared to how our journey with Sophia started.  We are very blessed with how everything has turned out, but it certainly has taken a a loving and caring Tribe to get Sophia to this point.  We have had wonderful, caring Doctors, Nurses, Pt and Speech Therapists not to mention the support from family and friends. 

 To date Sophia has had 6 procedures: Her initial CDH Hernia repair, Her second surgery (removing her appendix, adjusting her bowels, Nissen and G-tube) Third replacing the first monocot G-tube with a button G-tube). Fourth, Dental Surgery to repair teeth with damaged enamel, 5th Cardiac heart cath, Sixth Removal of her tonsils.  She is a tough little cookie.

Through all of this one thing that we continue to believe to be important is to just let her be Sophie, She runs and plays and jumps and hugs just as any other kid, Sure there were times that that was difficult (like when she rode down slides and play on playgrounds and we worried that her g-tube would be pulled out) but we wanted to instill in her and her brother that there is nothing that they can't do (unless its naughty of course :))

At this point she has recovered fully from CDH (with a slightly diminished lung capacity, but a kids with asthma would have that so we say fully recovered.)

Life Is Good!

2 1/2 years later...eating remains the challenge

 

Calories Calories Calories....
Sophia is doing really wonderfully. Since around December of 2011 Sophia has been eating all on her own (she has not received any nutritional supplements through her g-tube since December and at Easter of 2012 her g-tube was removed). One of the fall backs of the g-tube being removed is that we can no longer easily give Sophia nutrition if she does not eat well, or if she gets sick so our focus has to be to make sure she does get enough calories to keep growing successfully. There are many plus sides to having the tube removed, including not worrying when Sophia (our little monkey)plays, romps, climbs and having the tube accidentally pulled out.

If any of you have ever had or been around a two year old you will know that they don't have time to eat... it is all play play play. So with this said you have to be really creative and have food on hand all the time. We have been told that to keep her growing that she should eat 1 1/2 times the amount that a typical child would. Why you ask? This stems back from when she was developing and her lungs were impacted. Having only 60% of one lung makes it so she breathes faster, thus she burns more calories then a "typical child" (if there is really a typical). Since she burns more she needs more.

Sophia tends to get all of the things that are yummy, creamer, butter, hot dogs, candy, shakes...Not to say that she eats all junk food, she also likes broccoli, cheese, milk, water, grapes, raisins. I would have to say her favorite thing though is Mac n Cheese.

Staying creative is one way we get her to eat as well, she really likes silly food, like ginger bread shaped french toast( made with colored bread), and doodle pancakes( draw with one color batter and pour white batter over the top), We also  tend to leave food out for her so she can munch any time she is hungry. The trick is doing it so our puppy friends don't also get a snack ;)

Sophia is just finally 25 lbs, she is slow to gain weight because she is such a busy body. In this society where obesity runs rampant you'd think being very lean would be good, and it is, but there is a risk if she gets sick, she doesn't have the cushion of a little extra weight that other kids have, so we have to keep an extra close eye on her.

sophie growing up

 

Sophia is doing very very well!  She had a check up in April of 2012 and Cincinnati Childrens was very happy with her. The Cartiologist wanted to get a baseline image of her heart function, this would be done with a Heart Cath. Due to being a little nervous about the procedure we waited and had it done at the end of summer. Labor Day weekend we headed to Cincinnati and had the procedure done. We were once again lucky enough to stay at our home away from home (the Ronald Mc Donald House). Soph had four hours of appointments the day before her heart cath and we went in at 5am the next day for the procedure. I have to say everyone was wonderful once again, the doctors, nurses and support staff. By 8am she was asleep and on her way to the Cath lab. After several updates I went to the recovery room to see her and walked her back to her room (by noon). We had to wait four more hours and keep her still and flat on her back, that was nice and easy since she was coming out of sedation. During that time we recieved wonderful news that Sophias heart function was much better then CDH kids typically are. Her arteries in her heart do not constrict while under stress. they let blood flow through and  She has good strong vasculature in her smaller lung. To make a long story short. If she can't keep up with brother it is not the health of her heart keeping her back. GO SOPH!

Doing GREAT!

It's been a while since I updated the blog but I thought tis the season to share wonderful news. Sophie is an all star and is eating like a champ. She still has her g-tube and probably will through winter as a fall back in case she gets sick over the winter. But I am very happy to report that in the last seven weeks she has only been tube fed six times. She is still drinking formula to keep her calories up but she also gets all of the naughty stuff we shouldn't have like creamer, cups of 1/2 and 1/2, Ice cream, Mini Candy bars and so on. As far as food rule breaking...she breaks all of the rules that I had for Liam. Because she needs more calories and most likely always will she gets more treats than he did, but she still eats good stuff too. She eats broccoli, carrots, zucchini, lettuce, apples, oranges, and chews on lemons. She has also enjoyed the pleasures of happy meals. She loves the burger patty. She takes that out and eats that. she has even eaten 75% of the two patties that are in a mcdouble. Ok so that doesn't sound like something to brag about but once again think she needs calories. She is almost 2 and is only about 20 pounds and 32 inches tall. She is one lean mean Sophie eating machine! Sophie is also chattering up a storm she has over 40 words but only uses about 12 commonly. I think NO and MINE are her two favorites. This morning she was eating a bagel and our dog Bentley came up to her and she looked and pointed at him and said NO (she did not want him to get her food). She also utters Uh Oh quite a bit as well.

Sophie and Liam do really good playing with each other, it Liam thinks Sophie is being bothered my someone he doesn't really know he'll put his hand on her and say My Sophie, kind of telling them not to mess with his Lil sis. Although they are quite typically brother and sister. She'll have one of his toys and he'll come over and say that's mine and take it away from her. She has learned fast because when he has one of her toys she'll go over to him, extend her hand and continuously say, mine, Mine, MINNNNE.

Unlike Liam... Sophie recognizes that it is bedtime and will go to bed while she is still awake. Se is also a snuggler and loves to sleep with her stuffed friends.

If you were to see Sophie you'd never know that she started life as she did. She runs, walks and climbs like a billy goat. She plays as hard as her big brother does. She also has an incredible attention span. She can play with play dough for an hour. She really studies things and she is smart as a whip.

As much as we have been through with Soph we would never trade the experiences we have had. We have been blessed with so much, we have so many wonderful memories of Cincinnati, our nurses, doctors and our Ronald McDonald House family, not a day goes by that we don't think about our experiences and the wonderful people who touched our lives forever.

Happy 1st birthday Sophia!

March has been a great month for Sophia! Not only did she celebrate her big no. 1, but she also has made a lot of headway with feeding. Oh what a difference a therapist can make! Sophie love her new speech therapist in Saginaw and so do we. Not only does Sophie respond well to her but , she also has given us wonderful guidance on feeding. I am ecstatic to report that Sophia no longer is on the pump at night. This is largely in part to the new therapists guidance. Through the month we have removed feedings and added volume to her tube feeding. For example at the beginning of the month she took roughly 155ml six times a day. Now she is taking 220 four times a day and she is eating about 3oz of table foods a day. while that may not seem like a lot it's huge for Sophia. She had chewed on cubed potatoes, corn beef, cooked carrots, broccoli, and green beans, Ice cream, puffed cereal, cheese, beef sticks and she has tried many of the foods we have at dinner as well.

Although she is a light weight at 18lbs 11oz she makes up for that with her height of 30 1/2 inches tall.

Sophia also has grown accustom to being up right. She has taken as many as 14 steps in dependantly. When she is unsure she either squats and crawl or she finds furniture and walls to toddle along. Our Pediatrician was extremely impressed at how she toddles around the exam room the whole time she was there for her one year well child exam.

Sophia also had a lot of fun this month watching a parade in Bay City and Celebrating her cousin Max's birthday. For Sophia's birthday I got her a monster cookie (liam got one too). She wondered what is was and then really started having fun with it. She got more messy eating/playing with her monster cookie then she did playing with her cake at her birthday party (a few days later).

Sophia is truly an amazing little girl, she is still a very happy and content little girl. the only times she makes unhappy noises is when she is fighting sleep, got hurt or some one is trying to take something away that she still wants.

This year has been a truly amazing journey...and everyday we still thank god for everyone who helped us in any way or are still helping us.

Busy Busy little girl

Sophia motto this month is...Speed, I am speed. We have never seen a baby crawl as fast as she does. It is literally so fast that it is like she is running on her hands and knees. When she reaches her destinations she stands up like a pro and she frequently cruises (walks) along the furniture. Sophia is really trying to walk as well she has now taken six steps in a row! It won't be long before she is chasing her big brother around.

Sophia has had allot of fun this month, she had a girls weekend with maw maw and mommy when the boys went up to Aunt Cindy's cabin. During the girls weekend she played while mommy and maw maw started building a crazy troll sculpture out of paper mache'.

Sophia also visited the Midland Center for the Arts and saw Dinosaurs with he Brother.

As far as eating goes it seems that we take two steps forward and one step back. She is still trying to eat. In fact she really likes pasta (especially the pasta nests that a friend of mine gave us), string and regular cheese, puffed snack foods, corn beef hash and jello to name a few. The step back is that it is still not enough to sustain herself. She still receives night time feedings to help her grow. Which can be a little scary for parents of a Roley pole-ly baby. At night we connect her g-tube to an extension to a feeding bag that is connected to a feeding pump. The pump kicks on at designated times to give her food. While most people say "you mean you don't have to get up with her to feed her in the night...what a godsend..." What people don't understand is that she still wakes for her pacifier and more importantly is that the feeding tube becomes a choking hazard for a baby who twists and turns through the night. We have on several occasions checked on her and she has had the tube wrapped around herself. Having a child with a g-tube throws all of the newer baby "crib rules" right out of the window. If you think having a blanket in the crib is dangerous try having a long tube that is tethered to a pump and the baby herself. We might have a pump...but night times are still very interesting at our house.

Last month I spoke of our therapist who did not believe what we were telling her despite seeing it with her own eyes. Needless to say after a few more meeting like that one we decided that she simply was not a fit for Sophia. We have since cancelled the appointments through that organization and have taken her to see a therapist who was recommended to us by Sophie's wonderful physical therapist. Sophie has seen the new therapist once and we can already see that this was a wonderful decision and we believe we have finally found Sophie a Speech therapist that is a fit for her. We are confident that the new therapist will get Sophia moving forward with eating as we do. We are very, very excited about this change for Sophie!

It's hard to believe that Sophia is almost a year, We have so much to be thank full for and there are so many people who have touched ours and her lives though this journey. Thank you again everyone! -

10 months and Sildenafil free!

Sophia has been pondering the last several months what life would be like without her Sildenafil (revatio a.k.a Viagra) for her Pulmonary Hypertension. She now knows that it is perfectly Divine. She has been completely weaned off the medicine for about a month now and results of an Echo-cardiogram show that her Hypertension has resumed to what typical babies have and has remained there. The Cardiologist told me the news and then told me there is no need for a follow up appointment with his office as long as she keeps breathing normally. We will of course follow up in Cincinnati for years to come (they like to keep track of there CDH'ers). YEAH! SOPHIA! Sophia continues to do well with her Simulac formula and is now trying small sips of the formula from a sippy cup. When My mom told the speech therapist this, the therapist did not believe her and almost did not believe it when she even watched Sophie do it. Sophie is also trying to eat things- well everything in fact, from tags on items in the store to Cheetos. While she is not eating full portions she is indeed trying-a fact that once again bewildered our therapist. Sophie successfully has eaten green beans, portions of beef sticks, corn kernels, Cheetos, corn beef hash, jello, ground up chicken, pork and beef. She has no interest in baby food, our thoughts about her eating is as long as it is food it is great for Sophia. While giving her "junk food" is not the ideal situation it is something she finds enjoyable to have in her mouth and it has higher calories which she needs as well. I use junk food in quotes because at this point we have read enough on the Internet to believe that no food is really junk food it is just calories and if you manage your calories in a balanced diet then it is not really bad. ok enough on that topic what matters is that she is putting food in her mouth at this point along with chewing and swallowing it and that in our eyes is Fantastic progression towards eating as we do.

Now you see em now you don't

Or as we think Sophie is saying... I can see clearly now my bangs are cut! The debate of cut or not to cut came to a close this month with mommy pulling out the old scissors and giving Sophie her first hair cut. For those of you out there wondering...no we did not keep a lock of her hair. We have the photos to document it. She is just to cute to have that hair covering her face and barrette's at this age..ha! It was just a game to see how fast she could pull them out.

Liam is definitely showing his love to Sophia these days. He will introduce her as My Sophia and he wants to hold her more and more. Sophie loves her big Brother and he is the one who can make her laugh the fastest of everyone. Liam also loves her toys (he thinks they are all for him), we remind him that if he plays with Sophie's toys that he can't get mad if she touches his.

Bitter Michigan weather has kept us indoor for most of the winter but we did get the opportunity one day to try snowshoeing. About a 1/2 hour after we started we were back to the car but at least we can say that we went.

Sophia also played outside in the snow a little with her big brother. He made a snow fort/castle with daddy and then wanted to show Sophie how to eat the castle.

Merry Christmas, Happy New Year and Happy 9mo Sophia

Wow time flies when you are having fun and Sophia has had a lot of fun this month. December always proves to be a busy month with the holidays but Sophia adds a new dimension to busy. This month she decided that four teeth simply were not enough and has been working on cutting four more. Luckily this time it has not made her as puky as it did the first time. Despite teething she still remains her happy bubbly self. Sophia has also decided that laying and playing is for the birds and she has decided that it is time to get up and play. While she had become very adept at sitting these days she really wants to be mobile and is bouncing on her hands and knees and loves to pull herself to a stand either on furniture or with our fingers. She gets the biggest grin on her face when she pulls herself up and then starts bouncing. Eating orally continues to be a challenge for Sophia but even with teething she is willing to give it a try. Over the holidays she got to nibble on a bunch of calorie laden table foods such as potatoes and gravy, green beeners, jello, squash, ham, turkey, candy canes and of course a cookie morsel or two. While we were in Cincinnati they really encouraged us to introduce her to table foods due to their higher calorie count then baby food. The higher calories will help our skinny Minnie to possibly plump up a bit or at least help her maintain her weight since she uses more calories then the typical baby to do every day activities. Another big change on the feeding front is that she is now on Simulac Sensitive formula and off of Elecare. Simulac is a milk based product while Elecare was an amino acid based. This change signals that her diet is becoming more like a typical babies at 9 mo although the volume that she takes is less. Sophia gets 130ml (around 4 1/2 oz) of 30 calorie formula six times a day where as other babies at this point are taking 6-10 oz of 20 calorie formula 5-6 times a day.

Another big thing for Sophia is that she is being weaned off her Sildenifil (for her Pulmonary Hypertension) by the end of this week she'll be completely off of it and then January 24th we'll go get an Echo cardiogram to make sure her Pulmonary Hypertension has remained at the normal level. If it is still normal three weeks after being off of the medicine then she'll be free of another medicine and they will monitor the hypertension hit at check ups. With this medicine gone she'll be down to one prescription. Yeeeaaah Sophie!

Looking beyond the food, teeth and her prescription changes she really enjoyed the holidays as well. Christmas was full of hustle and bustle on the on the 22nd Sophia celebrated with Aunt Sarah and Kevin. On the 23rd Sophia and Liam celebrated Christmas with the Hubers, Grandma Martha, Grandpa Cal, Great grandma Irene, Jake, Heather, Marleen and Justin. Christmas Eve was spent with Great Grandma Dorothy, Cindy, Glen and Britta. The fun continued Christmas day with presents from Santa at home and then off to Mama and Papa Bobs to celebrate with Scooter, Sherri and Max. Sophia did wonderful through all of the commotion and really ripped the packages open like a pro. While she did not get to see her GAS and GUD from Kentucky she really enjoyed the beautiful quilt and cool moose they sent up for her and she giggled and giggled when her brother Liam played with the really cool finger puppets he got from them as well.

December ended with fun at the Children's museum where they celebrated New years every hour on the hour and Sophia sported a New years Tiara (yep I did say tiara- stop laughing and get back up on your chairs). Sophia and Liam both slept though the New Year celebration at Mama and Papa's. 2010 was an epic year for Sophia and we all hope and pray that 2011 will hold many more wonderful stories.