A special friendship

Last week when Mayleigh and I were at Nationwide, I finally got a chance to meet a very special friend.

Let me back up a bit. In about April of 2013 I was going crazy. We were in that dreaded wait for that special phone call from our agency about our daughter. What helped get me through was reading blogs from other families who had either just adopted or were also waiting. I came across one and after reading it I realized she was with the same agency and was also going crazy waiting. So I decided to email her. We emailed a few times about the tough wait and I remember a line she wrote was "we can wait in misery together".

About a month or so later, Carla was matched with her daughter. I was so excited for her. At that point we had only shared a few emails and we weren't that close yet. I never asked her what her daughters special need was....just didnt think it was my place. Fast forward to Aug. 1. We had finally got the call about Mayleigh. I was so nervous about her special needs and honestly had no idea where to turn for questions. So I put a post on our FB group of families who were adopting from our agency and asked if anyone knew anything about IA. A few hours later I get a private message from Carla telling me that is what her daughter Charlotte has and gave me all the info on who to call and where to send her file to be looked over. wow. So cool. But it just gets better.

From that day forward we began talking almost daily. When I was TERRIFIED about whether or not to keep mayleighs file, she was the one that talked me off the ledge! She was the one that gave me the hope that I could do this and we could do this together. After accepting Mayleigh's file, Carla got me hooked up on the FB group of other IA moms. She started sending me all the info she had on colostomy bags, companies of where to buy them, and videos of how to put them on. We were now bonded through colostomies!!

About a week after accepting Mayleighs file we got an update on Mayleigh with some pictures. I excitedly sent them to Carla. She couldnt believe it. She wrote me so excited saying she swore the picture was from a room at Maria's Big House of Hope! So once again she gave me the email of the lady to email and check if she was in fact living there. And Mayleigh was living there. And so was Carla's daughter Charlotte. Crazy! We found out later that they were actually in different rooms though.

Carla and I continued getting to know each other with our daily texts and emails. We didnt just talk about our worries about our upcoming trips to china or our long wait for our travel approvals...but everything. About our families, our likes and dislikes, decorating, and of course our daughters. We realized how alike we were and how much we had in common..not just our adoption journey but so much more. We just clicked....

Carla traveled first last Oct. for Charlotte. I had never been so excited for them. I waited nervously by the phone for texts from her and checked my emails and read her blog every time there was an update. She was going to visit orphange where Mayleigh was living. Unfortunately they only let her visit in Charlottes room so she never saw Mayleigh. But she was so close...which was awesome!

 She came home with lots of advice and info for Jeff and I for our trip in Jan. It was awesome. She kind of paved the way for us on what to expect. And I was glad that later I could pave the way for her with our kiddos first surgery. I was able to give her some tips and advice on what to expect since we did our surgery a couple weeks before hers.

In between our trips to China and our kiddos first surgery, we spent lots of time texting and talking on the phone about the struggles and joys we were both facing. I think I have never been more excited (in a weird way) that we felt the same way about adoption. It wasn't as easy as we thought. It wasn't as easy bringing a child into our home who was 19 months old and lived in and orphanage her whole life. When she shared something with me or I did with her, we would say, "I feel the exact same way." Nothing felt better than that. No one in my life besides Jeff, completely GOT IT!! Our bond just continued to grow. We even laughed when I would post pictures on FB of Mayleigh in an outfit and she would send me one of Charlotte in the same pants and VERY similar shirt. It was crazy! :)

After Mayleighs surgery, Dr Levitt told me we needed to come back in 4-6 weeks to check how everything looked and take the circle stent out. When I looked at my calendar I knew 4 weeks was Brennan's first week of school and Jeff's first week at his new job in the city. Not great timing. When I realized the week prior to that 4th week was when Charlotte would be there for her surgery, I begged Dr. Levitt to let me come just a few days shy of 4 weeks! Luckily it was no problem! I excitedly texted Carla that we would finally meet!!

The week of Charlottes surgery, Carla and Dr. Levitt talked about our friendship and how I was coming. He was asking her how we knew each other, if we lived close by. She laughed and said, no we have never met in person but we talk almost daily. He was so fascinated and excited that we would get to meet for the first time. I guess throughout the week Dr. Levitt kept bringing us up...just still shocked by our friendship. I guess he is predicting that Mayleigh and Charlotte with be college roomies someday!! Too funny! That would be really neat!

When I think back about our friendship and how it all started, I realize this is no coincidence. I have NO IDEA why I decided to email Carla that afternoon. But God knew what he was doing as he paved our path for us for and for our daughters. We need each other. HE knew that. I thank God everyday for our friendship.

Looking forward to many more visits together with Carla and Charlotte..and hopefully the rest of our families at some point!! :)

Medical Update

It has been just about 4 weeks since Mayleigh's surgery. Wow, how time flies. She is doing great. We have had some ups and downs though since leaving the hospital but basically overall our surgeon was right on...this was way easier than the UTI's we were dealing with every month!

I cant say enough good things about Dr. Levitt and Nationwide Children's hospital. BUT they do have a few kinks to work out. Dr. Levitt is new to Nationwide and the nurses and staff are trying to adjust to the crazy number of patients he is bringing to the hospital. And not just any kind of patient, but pretty difficult cases and they arent used to it. They dont know how he works yet and they are still learning. So unfortunately, we had some issues with patient care at home and making sure we had gone home with the right tools we needed to care for Mayleigh. Unfortunately this ended us back in the hospital to have her suprapubic tube changed. It had become clogged because the nurses didnt give me the right syringe to flush her tube daily. I was just using a medicine dropper when I guess that wasn't working correctly. Again, pretty disappointed in the communication breakdown but luckily was able to talk with Dr. Levitt and get things worked out to have the tube changed here in Chicago instead of going 6 hours away for a couple hour procedure. He also took my complaints very seriously about the nurses. He advised me to write out everything that happened and he took that to the appropriate people. I know they are working this out and as frustrating as it is...we wouldn't go anywhere else. Dr. Levitt is just simply the best in the OR and that is what matters!

So other than that bump in the recovery, Mayleigh has done great! For the first few weeks she ate meals standing up. Her bottom was still too sore to sit on so we just adjusted and that worked fine. She wasnt a huge fan of the carseat because of the discomfort. Luckily other than the 6 hour MISERABLE drive home from the hospital, we just went on quick car rides! But she was happy, playing, gingerly walking, and all in all, recovering very well!

This past Friday Mayleigh and I made another quick trip back to Ohio for a post op check up. She had to go back under for this so its not just a quick check unfortunately. Dr. Levitt was going to take the stent out of her urethra (which fell out a few days before we went) and take a look at how her anus was healing. The best news was that we don't have to do ANY dilations!! For those of you who don't know what those are....we really dodged a bullet with this news!! Most children after having this surgery have to be stretched. So the parents have to stick a rod in the anus 2X a day and hold it in there for 10 seconds. This goes on typically for 3-6 months.  Most toddlers obviously  HATE it and its not fun from what I have heard! This was probably the scariest part about surgery for me! Especially because of how much of a fighter M is! So Dr. Levitt started doing a new technique where he made the anus bigger. He said he knew for sure we wouldn't ever have to do as many dilations but wasnt sure until after surgery whether we could skip them all together. We are sooooo thankful we dont have to do any!! Again, thankful to have Mayleigh in the hands of this world class surgeon!

The bummer news we got was that Mayleigh's urethra was a little inflamed. Because of this Dr. Levitt had to put a foley catheter in her urethra until her next surgery. This will give the urethra some more time to heal. He said some kids bodies just take a little longer. This just postpones finding out if M can pee on her own. So for now she is peeing some through the catheter in her urethra and some drains from the suprapubic tube she still has in. Because they had to extend her urethra to a longer length than most kids, the concern will be if she can fully empty her bladder.

So in 6-8 weeks we will be heading back for her next surgery. (will be scheduled tomorrow but we are thinking mid Oct.) During this surgery they will take down the colostomy so she can begin pooping through her bottom. They will also take the catheter out of the urtehra. They will leave the suprapubic tube in for the week that we are in the hospital. At that point they will clamp the tube off and watch her pee. If she is emptying her bladder and there is no urine in the tube, she is good. But more than likely, she will be only peeing some and not able to empty her bladder completely. If this is the case, the nurses will teach Jeff and I how to intermittently cath her. This will happen I think 3X a day to drain her bladder. We are praying we dont have to do this but I am kind of preparing myself mentally that we will.  I am nervous but honestly, not as nervous as I thought I would be when Dr. Levitt broke the news to us. He is hopeful that even if she cant drain her bladder now, that her muscles will get stronger over time and she will eventually urinate normal. But he also has mentioned, there is a chance she never will be able to. That is scary and we will cross that bridge when we get there.

Am I terrified that in 8 weeks we might be putting a cathether in our daughter a few times a day and possibly doing an enema every night for her stool?  Not as scared as I thought I would be. To be completely honest, if you told Jeff and I everything we would have to do to care for Mayleigh, we would not have accepted her file just 13 months ago. There is just no way. But God had a plan and I am thankful for that plan.  Revealing JUST enough to give us the strength to deal with each step one step at a time.

We are so completely blessed to have such an amazing FB support group of moms dealing with these same issues with adopted children.  I have met a few of them in person and will look forward to meeting more. The support we get from them is what keeps me going. I know the next 3 months look scary, but catheters and enemas will become our new norm and will be no big deal someday. Just like changing a colostomy bag, irrigating her stoma, flushing a suprapubic tube, and all dealing with 233 stitches has been.

I have said it before but truly know Mayleigh was meant for our family. She has given our family so much strength and brought us all so much closer through all of this. When I hear my oldest say things like "we are so lucky to have Mayleigh", I know it is life changing for them too. We are still having good days and bad days. As crazy hard as her medical issues have been, I sometimes think the emotional issues are harder. We still continue to work on our bond and some days it is strong and other days we struggle.

Poop!!!!

It felt like it was never going to happen.....

But today Mayleigh had quite a bit of gas and actually had some poop!!!! Why so excited, you ask??? This is what allows us to go home!!!! We are so excited and I cant wait to tell the Dr. tomorrow at 6:15 when he wakes us up for early morning rounds!!! 

So overall today was a good day. A good day because my boys are here and we are all together as a family. Hospital or no hospital...I am happy to be all together again after 7 days. 

I was so worried about how the boys, well mostly Brennan, would do seeing their baby sister with so many tubes, wires, and especially the NG tube coming out of her nose. But they did great! We prepped Brennan with how she looked and he did great! M gave such a big smile when they came in the room and she immediately started handing the boys toys and saying "thank you Kullen" when they would take them from her! :) 

 The boys are having no problem being here. They started off playing in the playroom on Mayleighs floor while we prepped the kids with pics of M. When they got to the room, the wii was already there waiting for them to play. We checked into the Ronald McDonald House after a visit with M and they got to each pick out one toy, one stuffed animal, and one blanket. Then the lady proceeded to throw match box cars, coloring books, and puzzles in our bag to take! They are loving this!! No complaints that they are stuck at the hospital with M. This seems more like christmas morning or Disneyland! ;)

This morning we checked out more areas of the RMH. The library is right next to our room. After breakfast we threw a load of laundry in and we checked out the arcade and play room. Let's put it this way...there is plenty to keep them busy here! On our walk across the street to the hospital I get a text from Jeff saying the bat mobile and batman are suppose to be out front of the hospital for kids to see. See what I mean...Disneyland! 

LOVE this HUGE teddy bear in the library at the RMH!! Would love this for our house!! ;)

Game room!!

Batman and the bat mobile!!

After getting M up to walk and play in the playroom, the boys and I had lunch and headed to a children's museum called COSI. We were really hoping to go to the zoo today but the weather was too rainy. Maybe tomorrow if we are still here. Or on our next week-long stay in October for surgery #2!  I cant even tell you how nice it was to get out of the hospital and do normal people things! It was so fun spending the afternoon with just the boys! We had a blast! We will definitely going back there in October. We even ran into M's doctor. Not Dr. Levitt, her surgeon but his assistant who assisted in her surgery. He is actually the one who comes daily (sometimes 2X when Dr. Levitt comes) to see her and check on her. He is wonderful and we got a chance to meet his sweet family. He said he had heard about Mayleigh's progress today and was so excited. (he was off today) Such caring doctors! We have been blessed with that for sure!! 

The playroom! So thankful for this room!

M was walking all around looking for toys today!

After we left the playroom, poor girl walked the opposite way back to her room and headed straight for the elevators. :( I know Mayleigh...we ALL want to go home!

This girl just kept playing. Even after getting back from an hour in the playroom, she went right to play with Kullen in the room!! So strong today!! 

playing at COSI

This area was only for kids 1st grade and up! B thought that was pretty cool! 

rock climbing!

and of course, the water table!! 

So all in all we had a good day and got some great news from the doctors. NG tube came out this morning. They took her off the pain button that could be pushed every 15 min. She is still on the same pain meds but thought she could be dropped to just meds every 2 hours. So we lost about 3 IV cords today!! We are down to just the one IV tube and the tube for her to pee. We can actually move her around a bit and she doesn't get so tangled!!! It's the little things! :)

I will leave you with the sweetest photo of the day.

 Adoption is pretty special. :)