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!

May 21, 2010

On May 21, 2010 we saw Emma Grace's picture for the first time. We knew we were getting close to being matched, and we thought May would be our month. The shared list came out in China, and we didn't get a call. We spent the next 3 days a little depressed that we would have to wait another month for the possibility to be matched. Once a file is matched to a family, you have 72 hours to lock it or release it. Someone from our agency just happened to go into work on a Saturday morning (72 hours after the first list) and while there he decided to check the list. There was Emma.... and we were at the top of the list. A perfect match!! I can't imagine having a better fit for our family! We are so thankful for this sweet little girl and we stand in awe at all the amazing things God has done since her adoption! 

These were the pictures we received on May 21, 2010. She was approximately 6-7 months old in these pictures.

May 21, 2013... Emma Grace holding her baby picture

She is pretty awesome =)

Changing daily...

It is hard to believe that we have been home for just over a month! So much has changed since Hannah became our daughter on April 11. I am saving her "medical" update until we have a few more appointments, so this will just update about her time in our family. I will say that we are slowly piecing together the complicated parts of Hannah's body. Her records from SFCV were pretty accurate, so we are thankful for that relationship and their willingness to share so much with us before we adopted her. We go back to Cincinnati two more times in June, and then we will have a clear vision on what we need to do with her moving forward.

Hannah is changing daily and seems so happy. Her language is developing. She is just like a toddler learning to talk. Tons of babble with an English word thrown in there. She repeats everything Emma says (even in the same whiney voice...) and I have heard her use several phrases spontaneously on her own. The language is becoming less of a problem although it is still not great. She understands all of my basic commands (go get your shoes, where is your shirt, where is your baby, are you hungry, are you thirsty, go throw this away, etc.) She says these phrases frequently:

I'm hungry

That is mine

Stop it!

No, No!

I want it

That is baby

owwwwww (when I change her diaper-LOL)

It amazes me how observant she is. If I pull my hair back in a pony tail, she turns to run to the bathroom... finds her rubber bands in the drawer and brings it to me for a pony tail. She always remembers where she leaves her baby and her shoes, her memory is great! If Timmy hits her in the head, she comes to me... points to her head and says "Timmmmmmyyyyyyy." She figured out how to tell on him really fast!

I have noticed this past week that she is starting to run with more ease. When we first got her, it was like a fast walk... but she is picking up speed! When we first got home she was terrified of the swing, slide and the trampoline (as you can imagine!) Just this week she can climb into the trampoline on her own and she laughs HYSTERICALLY when her siblings bounce her all over the place! We went to the park today and she climbed to the top of the play set by herself without asking me to come with her. She hit the top of the slide and smiled, but wouldn't go down. I climbed up with her and let her sit in my lap and she LOVED it!! Every time we got to the bottom she said, "Again!" and pulled my hand to climb with her. Tonight I saw her playing k'nex with her brothers and I was shocked at her fine motor skills. She was putting these tiny little beads on a pole and was so accurate each time she did it. I realized the other day that her balance is much better... she hasn't fallen off the bench in our kitchen in several weeks. As a matter of fact, she is climbing on top of the table in the kitchen and living room. She is definitely acting like a 2 year old with her curiosity! Here is the best milestone so far- she went to sleep by herself today!!!!! Normally I have to lay down with her and it takes 45 minutes before she finally dozes off. This causes me to miss saying good-night to my other kids. I also doze off when I lay down with her, so when I wake up I am not motivated to do anything. I promised Emma that I would lay down with her first tonight. Rick put Hannah in her room and went to lay down with her, but she pointed to the door for him to leave!! She fell asleep without crying. Not sure if this will continue, but I sure hope so!

She spends most of the time smiling and laughing. She is learning how to play with her siblings but sometimes gets a little rough... as in biting and hitting. When she gets in trouble, she cries and goes to sit by herself. It makes me a little sad, because she won't come to me, but I am sure this is something that will change over time. 

I still need to update about my other 4 kids, Andrew's 8th birthday, Emma's referral day and other special memories but that is all for now. School is out so I will have more time to update. I don't want to forget everything that happened in our family!

Matthew's last day of kindergarten! I can't believe he will be in 1st grade. 

Emma wanted pig tails... so Hannah did, too. Then they crawled around the floor barking like dogs because I said they looked like puppies. Hannah loves her sister!!

You can see the smile on Hannah's face! She has a blast flopping all over the place. 

Today we had a McDonalds picnic in the park. 

My Timmy boy

Emma loves to play at the playground

Sweet Matthew

Hannah climbed up all by herself!

Andrew loves to swing. 

Hannah loved the slide and wanted to go over and over again!

An update!

Hard to believe that we have been home for 2 weeks and we have had Hannah for 1 month. She is still doing well, although we certainly have our days. She is really comfortable at home and seems to understand that we are her family. She is very chatty with us and runs around and plays, but when other people are here she is really quiet, shy and clingy. She is still sleeping great and really loves her bed! We had 2 nights in a row where she ended up in our bed because she woke up during a changing. Both of those nights were awful because she rolled around and moaned like she couldn't get comfortable. I finally got so frustrated on the second night that I took her back to her bed and she fell asleep within 5 minutes! I think she enjoys her bed and likes the comfort of being closed in a tight space. I am so thankful she loves her bed and is a good sleeper.

 

Everyone asks me how Emma is doing with Hannah- they want to know if she is jealous. Not at all!!! Emma is really patient with Hannah and is a big help with her! All of my kids understand that Hannah needs patience right now and that she does not understand a lot of things. Timmy is the only one we have to watch... Hannah was standing in the middle of the driveway the other day and Timmy rode his bike right into her and knocked her down. She had a massive melt down and Timmy acted like he didn't care. I asked him why he did it and he said, "She was in my way!" Oh, my. He plays the little brother role really well! Most of the time he is fine with her... but he is the one who won't give up a toy or give into her requests.

 

We have decided to have all of Hannah's care done at Cincinnati Children's. It just made the most sense. She requries so many different specialists, and they are used to working as a team on a treatment plan. We live just over an hour from Children's hospital and 45 minutes from our local hospital, so it really wasn't much different. The problem was that they wouldn't get us in for at least 2 months unless we could prove that she was a "critical" case! Ugh... so frustrating!! Then she said that is best case, that normally they want adopted children in a family for 4-5 months before they are seen, to see how they grow and change. The nurse told me to get bloodwork and a renal/pelvic ultrasound done and send them the results. That would give them enough information to make a decision. Well, we had the u/s done Wednesday at 2:00 pm and by 8:30 am on Thursday, I had 2 missed calls from my pediatrician and a message from Cincinnati Children's saying they want to see us in the next few weeks! There was an issue with her kidney (we knew it was bad...) that needs to be resolved quickly. They are going to do 2 full days of tests and we meet with doctors on the 3rd day. Then we will be able to schedule her surgeries! We should know a lot more about our girl in the next few weeks!

 

Our local head start preschool knows about Hannah and has taken her information. We are not sure she will qualify, but given her age, medical condition, and development, we are hoping that will be enough to get her in. Unfortunately, since Hannah is adopted... she can't be labeled as having a "disability" but rather a "lack of opportunity." She has not been given the chance to develop her language or gross motor skills, so it isn't her fault that she is behind. BUT, there is still hope... so we have faith that it will all work out!

 

I have 11 days of school left and they can't go fast enough. I love my class and I have had an amazing year, but it is time to focus all my energy on my family. We are counting down the days!

 

Timmy and Emma's new hiding place... the kitchen cabinet!

My kids with some of their cousins

Emma and cousin Olivia

Matthew and Emma are the most patient with Hannah. They were helping her get to the sandbox. She is not very coordinated and falls easily when the surface is not flat.

We need a bigger sandbox.

Hannah was having the best time taking pictures with Matthew and Emma.

I took this from the top of my driveway. Emma was helping Hannah down the hill. She was walking really slow so Hannah would not fall. It was so cute!