life at the hospital...day 3 post op

We have now been here 5 days at Nationwide. It is such a wonderful hospital that it hasn't felt that bad but at times we are ready to bust out of these 4 walls. Actually compared to my last few months, this is the most relaxed and slow we have been! In one sense it's kind of nice to be forced to slow down.
Mayeigh has done so great since Monday evening when surgery was finished. She has slept thru the night great (which has helped so much for Jeff and I) and has not seemed to be in too much pain so far. They had her on quite a bit of pain meds the first day and a half but then dropped it down a bit. The hardest part for Mayleigh is when the nurses or doctors (or really anyone for that matter) come in. Even if they arent going to touch her, she still screams in fear. So understandable. She just doesnt trust anyone in this environment.  She has gotten a little fussier and a little more clingy but overall is doing great!! She did have 230 stitches. Can you imagine? That many stitches on her tiny, little body! She is so brave!!

Today was such a huge morning. They told us her goal was to get up and walk a little bit. Well, I kinda laughed thinking back to China when she was shutdown and refused to put weight on her legs. I thought no way will she walk here. But this little fighter surprised us!! She did great!! She walked about 15 steps and then we carried her to the playroom. It was too far to go for her first time up on her feet. She played for quite awhile with the blocks in the playroom before we headed back. On the way back to our room she held my hand and walked quite a bit! We were so proud of her! And it was so nice to have a change of pace for the morning.

She has also started talking a little bit this morning. Sometimes being her normal sassy self and other times, so sweet! Tonight I told her I loved her and she said "love you" without being prompted. It melted my heart.

Most of you know that I am on a FB group with other moms from around the US that have adopted kids with imperforate anus and chloaca. It is such an amazing group who share struggles, secrets, and successes. This week there were a few moms here doing some testing with their child with Dr. Levitt and there are a few moms who live within an hour or so of Columbus. So we planned a dinner out last night. Some of us had our kids and some of us didnt. It was such a fun evening getting to know these other moms who are dealing with some of the same struggles. Some moms who I have been chatting with on FB but never would have thought we would get a chance to meet. I met incredible moms and some pretty cute kiddos!! We all have such a special bond that brings us together. Pretty cool that FB can do that for us!!

 

So anyway...at this point, we are all just praying for poop!! :) I know...our whole life is revolved around poop. But that's the way it is with a child with this special need! Well, and I guess with my 3 other boys too who dont have this special need but were so very "special" with their poop issues! ;) So she has to have a bowel movement to even think about leaving this place. Our surgeon was goofing around and predicted tomorrow at 11 am. it would happen! Praying he is right! He IS pretty darn good! ;)

Since they dont think we will leave until Sunday, we decided to meet up with my parents half way tomorrow and have the boys come down for the weekend until we leave. We miss them so much and we think it will be nice for Mayleigh to have them around. It will make things a bit trickier but will be a nice distraction. They have so much to do here at the hospital. An art cart comes around once a day for the kids to paint or do art projects, they have a playroom on every floor, they have a reading area, and also a clubhouse (the call it) which is a place you can sign your kids in for 1.5 at a time 2X a day and they can play and do art projects. One of us will be staying at the Ronald McDonald house across the street with the boys and they have lots to do there. A playroom, a library, and there is a playground right out front of the hospital. I think one of us will take the kids to the zoo one afternoon. Sounds like its a good one! I am really looking forward to seeing the boys and having a change of pace to get us through the rest of this stay!

Please just say a little prayer that Brennan feels comfortable seeing Mayleigh the way she is and seeing all the medical equipment she is hooked up to. He didnt like seeing her with the NG tube in her nose and all the tubes coming out of her IV in her hand. Poor thing...he gets anxiety about stuff like this and it just freaks him out.  They have a life specialist who helps acclimate the siblings and deal with any fears they might have. We have already spent time talking with her and she is getting stuff ready for when they come. Again, this hospital is just top of the line! We have heard there is a possibility of hooking up the wii system to Mayleigh's tv so I am sure the boys will do just fine here! ;)

I will leave you with some cute pictures from today!! We had a good day and we are so proud of our brave girl!!!

Doing a little drawing on the iPad

Our friends who were here for testing, Erin and Ava, came up to visit. They were so sweet, brought balloons and pictures! It was a fun change of pace to our day! And Ava brought so much life to this room for that hour! We all enjoyed it. What a cutie she is!! 

First time on her feet since surgery! She looks miserable but we were all shocked at actually how well she did. The nurse predicted bloody murder screaming! We were so glad our tough girl proved her wrong! ;)

one goal checked off!!

playing in the play room!

She even walked back about half way! 

The physical therapist came right after our walking venture so it ended up being bad timing. M wasnt really in the mood for more playing. We are looking foward to her coming back tomorrow!

Captured a sweet smile today when we were playing. It is so nice to see our Mayleigh come back!

Haha! This is the nifty shower cap we use to wash her hair! It is a  less shampoo and its kinda neat! It comes out of a warmer so its nice and warm and Mayleigh enjoys when we massage her head with it!!

Post Op update...

Surgery is done. One hurdle completed. Mayleigh went back at 8:30 and we didnt see her until 6:30 last night. After talking to her surgeon at 4 and waiting 2.5 hours to see her was the hardest part of the whole day. There was some miscommunication. We shouldn't have had to wait that long to see her in recovery. But they were moving her from her regular room to PICU so I think that is where the miscommunication came in.  I was super anxious as we waited to see her. So nervous about seeing how she looked. Nervous about whether she would cry when she saw us. So many things. When we walked in to the PICU room and I saw her face, I lost it. Just started crying. The poor girl saw us and started silently crying. It was the weirdest thing. Her body looked like she was crying but yet you couldnt hear any noise. It broke my heart! For the first couple hours last night she didnt have much of a voice. I think it was from the breathing tube all that time during surgery.
Let me back up to the report we got from Dr. Levitt. He was very pleased how everything turned out but said she was very complicated. I think after 5 UTI's we knew she was complicated. Now this is my report after listening one time to all this info. So bear with me as I try and get it all correct.
Dr. Levitt said he was able to separate the urethra from the vagina. He smoothed out the urethra. He said he was able to pull the vagina down to where it needed to be and said the blood flow looked good and her uterus looked good. They did go in through the belly and I guess there was some miscommunication about that. He was going to be going through there no matter what to do some corrections on the colostomy. The colostomy was done in China and isnt exactly the way they want it done here. He made it smaller and actually changed the location of the channel to the colostomy. (I think that is right??) They also were able to pull the rectum down to the correct spot. It was quite high but he is pleased with how everything turned out. Poor girl has staples in her vagina and anus. She has stitches on the side of her colostomy on her side and has stitches under her belly button where they went in. OWWW! Poor thing!
This was the part we were not expecting. I guess when Dr. Levitt had to do some work to the urethra she now has to pee elsewhere to keep that clean. He never said this...I think I am guessing at this point! haha! So there is a catheter in her urethra to hold that open and the tube comes from her urethra up to the side of her stomach and just makes a little circle of tubing. It is basically just there to hold the opening open while she is not using it. So he created another hole on the other side of her belly where the tube is draining her pee into a bag here at the hospital. When we go home he said that can just go in her diaper. PHEW! Glad we dont have to do a catheter bag on the outside of her body. So this stuff will stay in place for 4 weeks. We will then come back in 4-5 weeks and Mayleigh will go back under anesthesia to test out the urethra. If she is draining all her pee and not leaving any in the tube they will pull that tube out. If she is only peeing half and leaving half in the tube, we will be taught how to cath her a few times throughout the day to empty her pee. (deep breath) But that will not be forever. He said it sometimes takes a little while for her to learn to empty it all and they will put her on meds to help that. So we have a few things going on that we need to be watching and doing when we come home. Wound care and tubes etc! Kind of a lot but I know once we figure it all out, we will be fine. Just feels overwhelming at first!
When surgeons open the anus there is usually a procedure called dilations that you have to do after for 3 months. Basically sticking a probe in her bottom to slowly stretch the opening everyday. Twice a day. Thanking God today for Dr. Levitt and his amazing surgery skills. He has been doing a new way where he makes the opening a little larger to begin with and WE DONT HAVE TO DILATE HER!!! That is such awesome news!!! Dilations can be so hard on the parent/child bond with adopted kids. They are still building trust and then you have to do that to them everyday...twice. We are sooo thankful to not have to do that!!! That is why we came to the best!!! :)
Right now Mayleigh is doing pretty well, all things considered. She slept pretty well. We all did and that felt good. We were exhausted. She has been having trouble with her hear rate. It has been pretty high since surgery. They have done all the tests to check for issues and have found nothing. They are just assuming it was from the trauma on such a hard, long surgery. She also needed a little bit of oxygen this morning in her nose because that was dropping. That didnt last long. She ripped it out...she hated it in there! She has so many chords and iv's and wires hooked to her that it is difficult to hold her. That is hard. We have been trying though because she rests better laying with one of us. We saw a little of her fiesty side this morning. That is our Mayleigh. She wouldnt have survived half of her crazy hard life if she didnt have that fight in her! ;) We were happy to see it!
She has rested well the last 2 hours. They think for today they will keep her in the PICU because of the heart rate and oxygen issues. Her fever has gone up a bit today too. Luckily we don't have to do blood work to check for infection.
I will try and keep the blog updated as I get time. Daddy is currently having some snuggle time with her. :)

This was soon after we finally got to be with her last night.

Daddy giving her some comfort!

Snuggles with mom

Poor girl would not let go of her daddy. This was after having to put the oxygen in her nose. 

 We kind of chuckled at her pouty lips about the oxygen. She was not happy! 

The long wait....

It is kind of surreal that we are sitting here waiting on Mayleigh's big surgery. I knew this day would come. I had talked to the surgeons even before we accepted Mayleigh's file and knew this was in her future. But for some reason it is still crazy that we are sitting here. Surprisingly, we are doing ok. Well, there are moments I feel fine and calm and then there are moments when I feel like I could just start balling. But we are resting assured that Mayleigh is in the best hands. Dr. Levitt is the best surgeon at this specific issue. Cant get any better than that!
Yesterday after checking in to our room they started Mayleigh on an IV and her meds to clean out her bowels. Bigger kids can drink the stuff but they said at her age is hard to get as much as they have to drink down. So they did the NG tube to get her meds in. She did great apparently getting her IV and NG tube in. They took her away to do that so we didn't have to watch. She wasnt crazy about the NG tube. It took some time getting used to. She gagged a lot at first and it made her drool.

It took a few hours to get the poop moving but once it did we were draining her colostomy bag often. The nurses looked at us like we were crazy for using the double diaper technique. But it works for us. They advised us using bags with the clean out since there would be so much and it would be pretty much liquid. (sorry for TMI) :) We are so used to the poop talk at our house! ;) So we spent about every hour during the night helping the nurses out. When they came in to drain her bag or check her vitals, Mayleigh flips out. She DOES NOT want anyone messing with her. She has had enough done in her short life that she gets it.

This morning we were taken down to surgery around 8. We talked with the anesthesiologist and Dr. Levitt. The hardest part about today is that there are still unknowns. With imperforate anus they have what is known as a short common channel or a high channel. It is better at 3cm. When they went in to look around a few months ago and check out where everything is, they saw that hers is 5 cm channel. He said sometimes these are inaccurate so that is the big unknown that changes a lot for her today. Dr. Levitt will make an anus opening and the vaginal opening (she also has what is called chloaca which means she does not have a vaginal opening.) Then if it is too high for him to reach the rectum they will have to make an incision in her belly to go in to reach. We are praying that his earlier test were wrong and everything will be done from the back. This will be a much easier recovery for her. It also will change the length of surgery. 4-5 hours to 6-8 if they have to go in through the belly. Depending also on how things go she will maybe be given an epidural at the end of surgery for pain. She will also be on pain meds through the IV.
We are expecting her to be pretty sleepy and out of it today but honestly have no idea what to expect after that. Poor thing. Praying her pain can be managed and we will be able to give her the comfort she needs.
We are so thankful for all the love and support we have recieved. We feel your prayers and thoughts!! Mayleigh is so loved...she has no idea!!

Happily playing before she got messed with! 

Love this picture of the two of them. So sweet.  

It was a long day. Up very early and not a lot of naps. 

Girls weekend

After a long 6 months of pure chaos in our life, I was soooo looking forward to our girls trip. We had this scheduled a few months ago....before the moving date, and before there was ever talk of a surgery in the summer. Last weekend was not the most ideal time for it and took some tricky planning, but was SOOO worth every second of it and all the stress planning for me to get away! Unfortunately our fab 4 was only our fab 3. At the last min. a girlfriend had a family medical issue and couldn't come. We were really bummed but understand that family comes first.

So we headed to Michigan City, IN and stayed in a cute cottage. We enjoyed the sand in our toes, some shopping, sleeping in, and a lot of laughs! Our car was full of shopping bags and that is always a true sign of a successful girls trip!! There is no doubt about our group, we do LOVE to shop!
I am going to miss seeing these girls and their families on a weekly (ok, or daily) basis but we are looking forward to the weekend sleepovers we will now get to enjoy together!

We started the weekend off right with pedicures!! 

AHHH!!! so relaxing!

Me and the cute preggos! ;) (Jessica, I was missing you my non preggo friend) 

Yes, this was my view for a few hours on Friday! Could have been a little warmer considering it is July but we enjoyed just relaxing.

We are hoping to book a beach house for next summer for our families! Or TWO beach houses...we do have big families! ;) 

Girlfriends like these girls are hard to find. Girls that you can TOTALLY be yourself with. Girls that will be there for your successes, your failures, and struggles. Girls that are basically second moms to all my kids. These 3 girls are irreplaceable. I thank God everyday for bringing them into my life and I know they will be friends for life!

A new chapter...

2 weeks ago the movers came and started boxing up the house. A quick two days later and the whole house was empty and the truck was loaded and ready to go. It was sad to leave such a great home...our home. The home we moved into when I was 36 weeks pregnant with my first baby! 6.5 years later, 4 kids coming home to that house, and lots of memories made, but it was time to move on. As hard as this transition has been for me to swallow, I think I was finally ready. Ready to quit thinking about the move and just do it. Ready to get settled and move on with life.

Before we left we spent a few weeks fitting in time with all the special people in Mt. Zion/Decatur. We had a blast. Although I do have to say, sometimes it was hard to not come home and just cry knowing what great friends and family we were leaving. But so beyond thankful for the friendships that were made...for my kids, Jeff and I.

Love my "ADM" girls! Over the years we have had many family BBQ's and many wonderful girls nights out. So fun that some of us have been friends since before kids! Love you guys so much!!

And the kiddos! Such great memories and so fun watching them all grow up!

We squeezed in a few playdates the last week were in Mt. Zion. Going to miss these Talty boys!

This pictures just makes me happy. Our last day in Decatur was spent with this awesome crew at the Zoo!! What a special group of friends!!! And a whole lot of kids!! ;) 

Chase and Olivia. Olivia tells her sisters that she is going to marry Chase someday! I think I would be ok with an arranged marriage! These two are just too cute! 

The three musketeers! These 3 had a special friendship. 

Big kids!!

The mommies to that awesome crew! Love you all so much!!

Kristin and I have been friends for 10 years. We spent many weekends together pre-kids and then continued to be there through all the births (and adoptions) of our kiddos. Our hubbies have been friends for 15 years. Love this family and we are looking forward to fun family weekend get togethers in the future! 

After a few years going to First Christian Church we joined a small group. For 3 years we have enjoyed getting to know the other couples in the group and their kiddos. We had a going away party at the surf club with our group. Look at all these kiddos!! Those poor babysitters that watched all of them in our basement during group meetings. We will miss this group so much. Such a wonderful group of people that supported each other. We love you guys and you will always be very special families to us!

The fab 4! (Thanks Leslie for the cute name!) There are just no words. You girls are like sisters. Love you all so much!!!!!  

And most importantly we celebrated my parents birthday before heading out of town. Enjoyed one last dinner before parting ways. A new chapter for our family. With my parents moving to their house in AZ full time, we are looking forward to having them in Chicago often for visits!

Happy Birthday Dad!! Going to miss having you down the street but looking forward to our visits in AZ!!! A special thank you to both my parents who have helped so much during the move. We appreciate it is so much.

Thanks to all our friends and family for making this place so much fun these past 9 years (3 years before moving to MO and then back)! We will miss Decatur/Mt. Zion so much. The people are simply the best!! 

And to leave you with a laugh...Brennan wanted to strike a "power ranger" pose! :) Hope Glen Ellyn is ready for this crazy crew!!!!

Mayleigh's 2nd Birthday Party

After canceling the first scheduled birthday party, Mayleigh finally was feeling good 3 weeks after her birthday....so we partied!! Honestly with the move and the 3 weeks of being sick, I was pretty worn out and kinda wasnt in the mood for party planning but I knew I would regret that later. This was after all her first birthday home with her forever family!! WE HAD TO CELEBRATE!!
So with a pink lemonade theme, a bounce house, beautiful weather, and lots of wonderful friends and family...we celebrated! Mayleigh had a blast and after 3 weeks of not very many smiles, it was wonderful to see her smile and laugh and feel good!!
I will leave you with lots of pictures!! :)