A little bit of this and a little bit of that...

It has been awhile since I have updated. We have been crazy busy, but I am now finally starting to catch my breath. I am counting down the days until Christmas break when I can really slow down and get caught up on life! I just recently completed ALL 5 photobooks for my children, personalized for each one. I am so happy that job is finished, but going through all those pictures made me want to update the blog! Here is just a small update.

Here are the kiddos in mid November. I took them out to get fall pictures. Hannah has changed so much since our family pictures in June and I wanted an updated photo for our Christmas card this year.

 

Hannah has recovered wonderfully since her surgery on September 30. I'm not going to lie- that first month was one of the hardest months of my life. Hannah was having a difficult time adjusting to her new body, and we were having a hard time managing it while also being a parent to our other 4 children and working full time. It was one of those I-just-want-to-crawl-into-a-fetal-position-and-cry-my-eyes-out kinda months. We are on the other side of it now, and I am so thankful. There were many nights I cried myself to sleep wondering what kind of quality of life my daughter was going to have. I had to tell myself to knock it off, toughen up, and do the best I could. Thankfully I realize now her life will be just fine. On top of it all, she is darling, smart, beautiful, and growing like a weed. What more could I ask for?

This was Hannah just a few hours out of surgery.

And this is Hannah now. She is doing so great. The doctors are so amazed at her recovery and really optimistic about her future. We have one more surgery to go, as we tackle the right kidney this summer. I know we have some more battles to fight in the future, so we are trying to enjoy this time of health over the next 6 months. She is talking a lot more (but difficult to understand) and has the best personality. She loves to play and laugh... it is just amazing to see this little girl now!

 

Andrew

 

Matthew

 

Timothy, on his beloved tractor.

 

 

These two pictures are from the day we met Emma Grace in October 2010. I will never forget that happy, but floppy baby we met in China.

3 years later, the same October day, this is my Emma Grace. She is AMAZING. She is so smart, active, and funny. She is such a blessing!

 

I just love this picture of my girls and their favorite babies!

Happy Birthday(s) to you!

We got home from China in April. Andrew had a birthday the end of April, then Matthew in June and Emma in July. 

Emma Grace is now 4!!!!

Emma has found her voice this year. She is very verbal and communicates exactly what she is thinking and feeling with NO problem! She has a sense of humor that is unbelievable. The best one liners of any 4 year old I have met. She has so many facial expressions that she busts out at the most random times. She is all about "being fair" and has learned the line... "but that's not fair" in a perfect little whine. Here are some things to remember about our little girl:

*she loves baseball and has waited for so long to play t-ball. Her dreams will come true this fall when she finally gets to play!

*she loves Dora and will use a few spanish phrases periodically :)

*she loves hamburgers, rice, noodles, grapes, strawberry icing donuts, chips and salsa, pepperoni, coke and sprite.

*she still sucks her thumb to fall asleep. She also twists her hair at the same time. 

*She tells everyone she lost a tooth, but she actually never had one because that is where her cleft is. 

*she hates dresses, but since getting a new sister, she is wearing skirts more frequently and actually enjoying them.

*she loves to match her sister.

*her favorite activities are riding her bike, playing babies, playing pretend with her siblings, fighting bad guys, playing baseball and watching TV. She always asks for a "little kid show."

*she knows all of her letters and a word to start with each letter. She LOVES school!

*we call her "little mommy" because she is always telling everyone what to do!

*she celebrated her birthday with a baseball cake, all her siblings and best friend, Olivia, dressed like baseball players and we had a t-ball game in the backyard. 

My sweet Matthew is now 6 and getting ready to start 1st grade! Here are some things to remember about our big guy:

*he likes fighting bad guys and playing pretend with his siblings

*he fights like cats and dogs with Andrew... wears me out!

*he is reading so well and he also enjoys school!

*he still sleeps with his blue blankets

*he doesn't really have a "thing" he is really interested in, he like to play with everything and is game for anything!

*He is still playing baseball and moved up to machine pitch this fall. He did a great job.

*He is hands down the sweetest child you will ever meet. I mean... look at that face!

*Although sweet, a fierce little temper comes out of him at times. (He is often provoked by big brother, in his defense!)

*His teachers always adore him. He is an excellent math student and very good at mental math!

*He has not mastered riding his bike without training wheels, so he has pretty much avoided his bike. 

Andrew is now 8 and in 3rd grade:

*He is freakishly intelligent. He has critical thinking and reasoning skills that amaze me.

*Although he is brilliant, common sense doesn't come easily.

*He is afraid of everything... gets a little annoying.

*He fell in love with Harry Potter this year. He is on book 5 at the moment.

*BOOKS, BOOKS, BOOKS... this kid is always reading. He loves all types of books and is often reading 2 or 3 at a time. He will finish one, and then immediately go to the beginning and read it again.

*He has had the same core group of friends since Kindergarten and it is darling to see them grow up together and stay such sweet friends. His good 3rd grade friends are: Jackson, Zach, Aaron, Shelden, Charlie, Garrett.

* He is outgrowing legos, and really all toys. He enjoys video games, reading, and riding his bike or playing football/basketball outside. He is like a real boy now, my baby is totally gone. He loves his IPOD.

*Math is his best subject.

I started this post at the end of the summer, and since then we have had TWO more birthdays. Here are my other birthday kids:

Hannah is now 4! Her birthday is September 10, 2009

*Hannah loves the color pink and anything fancy or girly.

*She adores all types of princesses and wants to be one!

*She has an amazing memory and is very observant to what is going on around her.

*She loves Doc McStuffins.

*She loves to play pretend with her siblings. She likes to be the mommy.

*She loves babies and takes very good care of them, especially her beloved Chinese baby. 

*She is a fighter. She is one tough cookie!

*She will eat anything you put in front of her, but has a deep love for Chinese food. :) Of course!

*She loves to play outside and has now mastered riding a tricycle!

Timmy Boy is now 4! His birthday is October 19.

*He adores trains, trucks and TRACTORS!

*He has a freaky obsession about clothes. He will only wear the same pair of pants. His favorite pajama pants are worn with a giant hole, but he will only wear those when at home. His "dark" jeans are his favorite, and they are almost worn out, too! He has a new outfit for every season that he will attach to and where until it falls apart.

*He worries a lot

*He has the best giggle of any child I have met

*He is a puzzle wizard! He adores puzzles

*He loves TV and will watch just about any "little kid" show.

*He loves to play pretend with his siblings

*He pretty much lives on his bike (or tractor) if the weather is warm enough to be outside

*He loves to dig with his trucks in the sandbox

*He really doesn't eat much. He will eat cereal, applesauce, a variety of fruit, carrots with dip, ham and occasionally he will eat peanut butter sandwiches. He also likes pepperoni, chicken nuggets and cheese sticks!

*He is still not a good sleeper and is difficult to put to bed.

*When he cries, I think our neighbors could hear him.

*Everything he says is 10x louder than a normal child. (he is the youngest, and needs to make sure he is heard). 

*He cries (a lot)

*You can't help but to love him. He is so cute, so naughty, and so cuddly!

Update on Hannah

On Monday, September 30, Hannah had the surgery we have all been waiting for. We adopted Hannah knowing she had a colostomy that needed to be closed. We knew there were issues with her kidneys, but we had no idea the extent of those issues and the care that would be involved with that part of her body. Through many tests and opinions of experienced doctors, we finally feel like we understand our daughter's unique little body.

Dr. Frischer, who is a member of the Cincinnati colorectal team, closed Hannah's colostomy. Testing showed that there was nothing "unusual" to be on the look-out for, he was simply going to take two ends and put them together inside her body. Due to her many operations in China, he was expecting a great deal of scar tissue. He said the surgery could take anywhere from 2-7 hours, but he planned on about 3. Dr. Alam is her urologist and he specializes in children with urology issues due to anorectal malformations. He removed her left kidney because tests have confirmed that this kidney has NO function and was simply a threat for infection.

Both surgeries were successful, but not without obstacles. There was a significant amount of scar tissue, as was expected. After working through the scar tissue, Dr. Frischer found that her intestines were turned and twisted 180 degrees from what they should be. This would be a mistake made in her Chinese operations. This would also explain why her stomach was so lumpy by her stomas. This took a great deal of time to fix, but thankfully he was able to do it. After seeing the intestines, Dr. Frischer called Dr. Alam in to help and to get his opinion. They worked together for over 6 hours on her surgery. The left kidney was successfully removed, but we were devastated to learn why this kidney lost function. Her left ureter was tied off with a silk thread knot in a chinese operation. Her left kidney issue was not a congenital defect, it was caused by human hands. Dr. Alam found the knot and reported that her kidney had a lot of meat left on it. He thought about trying to save it, but the damage was too significant and could not be done. After hearing these 2 mistakes made in China, and the pain and discomfort it has caused Hannah, we were heartbroken. Hannah is now left with half of one kidney and Dr. Alam will work on the issues with her right kidney over the summer. We will be following him to his new location in New York City.

Hannah had a duplicated right kidney, and part of it was removed in China. She was also born with 2 ureters on the right side. One ureter is good, one is bad, but they are fused together and share the same blood supply. Dr. Alam will have to separate the two ureters and reimplant the good one. As you can imagine, this is a complicated surgery. There is also another issue with her bladder, and Dr. Alam will have to work carefully with the bladder. It is a shame that she will not have her left kidney to make up for the suffering on the right side, but we have to trust that this was all part of Hannah's plan. We also learned that Hannah's appendix was removed in China. This wouldn't be a big deal, but it is needed for the next surgery. Dr. Alam's job is now more complicated than it already was.

Hannah has been in the hospital for 5 days. She has not had anything to eat or drink since before surgery. We are hoping that today is the day where big things happen! Her NG tube was removed yesterday and all is good. They turned the suction off Friday morning and she tolerated it well. The tube was removed at 3:00, and she did great without it through the night. That means everything is working.... including Hannah's bowels! Her plumbing is in business and things are working like they should. She should get liquids today and solids tomorrow. Hopefully all of that will be tolerated and we can bust out of this place!

I am simply amazed with my little girl. She has been through hell and back and will have to continue to fight for the rest of her life, given the issues with her right kidney and bladder. She has suffered, and most of her suffering was a result of her orpan status and caused by inexpereinced surgeons. We are going to choose not to dwell on the past but look to the future. She is here for a reason and we get the honor and joy of watching her grow!

We arrived at the hospital bright and early Monday morning. She was ready!

This was shortly before they took her back.

This was 3 days post op. She busted out her first smile since surgery.

This is the way our girl has looked most of the week... sad. She has been very calm and has hardly cried. I think she wants to get home and know her life will continue on as it did before!

This is the first time she sat in a chair post op. It was quite a task working around all the tubes and cords! We haven't done much walking yet. She has a UTI, so they are keeping her in the room. We are both going crazy in this tiny little room!

 

Pretendin'

My little kids love to pretend and use their imaginations! They say... "I'm a pretendin' mommy" or a "pretendin' baseball player" or whatever else it is they are playing that day. Sometimes I hear "mommy, mommy, mommy" over and over again. When I finally say "WHAT?!" One of the littles will reply "no, I'm talking to Emma mommy." On this day I walked into the garage and found Hannah sitting in the seat of the tractor and Timmy and Emma were in the trailer. Emma was dressed like a baseball player and they all had pink chalk smeared on their faces. They informed me that Emma was the kid (baseball player) Hannah was the mommy and Timmy was the daddy. Mommy was taking them to baseball. A few minutes later, I found them in the front yard. Hannah mommy was sitting on the "bench" (or the front porch as we call it...) watching the game. She was holding a jacket, which I guess helps her play the role of mommy a little better. They told me the pink chalk was sunscreen. That is important to have at a baseball game! 

Sometimes I wonder what Hannah thinks about all of this. Her language is coming along but she can't fully understand everything that Timmy and Emma make her do. I wonder if she is ever confused :) She certainly loves to play pretend with the other kids!

What to expect....

Many times over the last month I have thought to myself, "geez, I wish I knew all of this when I was in China!" Our journey with Hannah has certainly been one of trial and error and finding just the right solution to her medical needs. I will be the first to tell you we don't have it down to a science, and spend many days covered in poop, but I feel like I can certainly offer some advice on what to bring to China and how to care for a child that has a colostomy. I figured there might me a mama or two that would find some value in this information, so here it goes!

First of all, colostomy supplies are expensive. Chances are your child in China will be diapered. Our daughter had a normal diaper for pee, and then another diaper laid sideways and tucked down by her sides and wrapped into the bottom diaper. It was all tied together with a wrap. They changed her every 2 hours, blow dried it at changes and applied Desitin to keep the skin clear. The first time I saw her nannies change her, I turned my nose up at it and thought to myself, "they didn't wipe that very good, they didn't even use baby wipes!" Let me tell you- now I know why!!!! The skin around a stoma is incredibly sensitive. It breaks and bleeds easily. You have to be oh-so-gentle! We learned to just do a gentle wipe with toilet paper. We learned quickly that baby wipes destroyed the skin around her stoma and we even made her skin so raw, the desitin would not stick to it anymore. We have since found some great colostomy bags that we can keep on for 24 hours at a time, but we still diaper out of necessity. (bags just don't work for her consistently!) We found a great cream called ILEX. You can purchase it on Amazon, but it is very hard to get. You apply it to the skin and then cover it generously with vaseline. (If you don't cover it with vaseline, the cream gets stuck to the diaper and pulls the skin.) This was an absolute lifesaver to my daughter's skin. It completely healed her! Just recently we started using Criticaid, also purchased on Amazon. It is a thick paste. We wipe the poo off with toilet paper, then apply the cream generously!!! It has also healed her skin and is a good alternative to the ILEX. (Criticaid also ships with Amazon prime, so you get it fast!) Another thing we learned was to use a diaper that is a few sizes smaller on the one that is laid sideways. We found that LUVS don't hurt her skin. She is 30 lbs, so we use a size 5 on the bottom and a size 3 on the top. We cut the tabs off the size 3 so they don't flap up on her belly. We also change her every 2-3 hours to *try* and keep her clean. If you are adopting a child from China with a colostomy, I would bring different size diapers, a cotton tie to hold it all together, and many tubes of cream. Remember- not all creams are created equal. Spend the money to get a good barrier cream!

Something I REALLY wish I would've done, was researched different types of colostomy bags and maybe even watched some You Tube videos on how to apply a colostomy bag. If I had to do it all over again, I would contact some of the big companies- like Coloplast and Convatec to get free supplies. There are pediatric colostomy supplies and I have found that these companies send samples generously! Also, try getting in touch with an ostomy nurse or wound care nurse that can hook you up with everything you will need! There are different types of bags... one pieces, two pieces, those that empty and those that are closed. It is just trial and error to see what works. We fell in love with the teddy bear bag, two piece, made by convatec. We can get this bag to stay on longer than any other we have tried. When you apply the bag, the skin needs to be clean with soap and warm water and dried completely. You need to apply a no sting skin prep to help the wafer stick to the skin. We use Smith and Nephew no sting skin prep (also purchase this on Amazon...) Once the wafer and bag are attached, we use water proof tape to put over it to make sure it is sealed well. So... consider packing these supplies:
1) a pediatric colostomy bag/wafer with a "cut to size" hole. We can only get bags to stay on for a day, if we are lucky, so plan to take several bags. Pack the diapers/creams as a back up!
2) skin prep wipes
3)water proof tape (companies will provide this with the samples if you ask!)
4)small scissors to cut the stoma hole
5)regular scissors to cut tape

I know that not all stomas are created equally, this was just my experience. I think it would be better to go with "too much" versus "not enough". We found it incredibly difficult to find supplies in China, so make sure you are well prepared!

A little update on Hannah...

We just finished our last appointment with Cincinatti Children's hospital. We have spent almost every week there since the end of May, so we are thankful to be on this side of it! Over the last month, they have tested her kidneys, bladder, and colon to determine next steps. Here is what we know: Hannah has only part of one kidney that is functioning. That is a little scary for this mama! Her left kidney is not functioning at all. Part of her right kidney was removed in China, so it is small... yet still functioning. According to her blood work, it is still doing the job her body needs it to do within a normal range. Her GFR is a little low (59 and an average person is above 90) Hannah is fighting UTIs almost constantly. She has reflux in her right kidney and her bladder is not emptying properly. Her bladder is also really small, which adds to the problem. Her right ureteral seal is like a bubble, so that will need to be surgically repaired. Of all the things we have to worry about, her kidneys are by far the most important. It is a very real possibility that Hannah will need a kidney transplant at some point in her life, unless we can somehow help her bladder to do a better job. Her blood pressure is also really high (because of her kidneys) so she is on medicine to control her blood pressure. In order to save her kidneys, we have to control her hypertension and reduce infection and these are two things she struggles with constantly.

On a positive note... her colon is just fine! Her repairs in China for the rectovaginal fistula were done correctly. When the surgeon told me, my first response was, "REALLY!?!?!" and he said, "You sound as surprised as we were!" So, it was exciting to hear that something will be easy. Hannah is living with a colostomy and the only thing the surgeon has to do... is close it! Hooray!! At first they told us that kiddos from China usually need a surgery to repair the mistakes made in previous surgeries in China, and then another surgery to close the colostomy. That would mean Hannah would have to live like this for the next 6 months (minimum!) We were so happy to find out that we can close that sucker and move on with life!

We also had a gynecologist on team to evaluate that area of Hannah while she was put to sleep. We received wonderful news that Hannah has NO defects in that area and her body shows favorable signs to one day carry her own children. Although this is not an area of concern for many, many years, we were happy to hear more good news.

Although we are finished with our appointments we talk to someone from the Children's team almost daily about Hannah's care. Something came back in bloodwork... start this medication.... this UTI requires this drug.... I need an update on her blood pressure to see if the medicine is working... make sure you are doing this.... have you ordered this supply yet? OH, MY! It is overwhelming to say the least.

So, here is our plan. Hannah will only need ONE surgery (for now) to close her colostomy, remove her left kidney and fix her right ureteral seal. Before that can be done, we have to take control of her bladder so that it can "rest" for at least 3 months. She will be on medication that will paralyze her bladder and we will help her to void on a set schedule. The hope is that her reflux will stop. If it doesn't, her surgery might involve a ureter re-implant which we obviously don't want!! A few weeks before surgery we will re-test her to see if there is improvement. Surgery will be in 3-4 months and she will be in the hospital for about 5 days. We are not sure what her bladder situation will be after surgery, but we are willing to do whatever we have to do to save that kidney.

So, I'm not going to lie- right now is a really stressful time for our family. Hannah doesn't like that we are taking control of her bladder and it is a nightmare for her and me! I am reminded of that first week in China though- when I had to change her colostomy wrap. We both had a similar reaction, but after a week or so she laid back, was relaxed and trusted me. It is really hard for me to imagine us at that point with what we are going through right now, but I know we will. I emailed our nurse to tell her we were struggling and she was very supportive and reminded me this was a normal reaction! But then she reminded me that we are doing this to save her kidney and keep her from needing a transplant and all the stress just fell right back on my shoulders again. Please pray that Hannah will accept this part of her life and will start to trust us. We need to move forward with more medications but we can't until we are able to successfully take control of her bladder. I had a good ole fashioned cry tonight when I put Hannah to bed. She reached up and held my face as if to say, "I know exactly how you feel mommy!"

We love our little girl to the moon and back and we want nothing more than to help her. We are holding tight to the truth that her body is fearfully and wonderfully made!

Red Fingernails

Both girls now have red fingernails... and they love it!