We are back at Nationwide. Hard to believe we are already on our 2nd surgery. I feel like time has flown by since we got Mayleigh. And been CRAZY busy!! It makes me physically and emotionally exhausted when I think back to the last 9 months of our lives. Yep, just a few days ago was 9 months from the day we met M. (not quite to the day we got home and started this craziness) So in just under 9 months, we have been to the hospital or ER 11 times, put our house on the market, spent many weekends back and forth to Chicago looking for a house, moved, surgery #1, and got the kids adjusted in school, lasty, back for surgery #2! Seriously, exhausting! But the great news is that we are still alive and doing well!! Really well. I can't believe how well all that has gone. Had you told me that would be my future while we were looking at Mayleigh's file, she would most definitely not be here with us today. So thankful again that God gave me just a little bit at a time!
Mayleigh's surgery went really well. Dr. Levitt said that everything looked great, reconstruction wise. There are still a lot of unknowns for her future but at least everything is in the right place and in Dr Levitts words, "for having chloaca and imperforate anus, she looks basically normal." We can't ask for better than that!! This surgery has been so much easier on her body. She just has the stitches were he took down her colostomy. She is not as sore and she was up moving very quickly after surgery. She is back to her fun, happy self and is recovery very well!! That is making this hospital visit so much easier than the last one!! We are up playing, going to the gift shop, laughing, talking and at least happy most of the day!! This was for sure the easier surgery to have the boys with all week. I was a little nervous the first day with all 6 of us but it is going really well. When M was taken back for surgery, I met up with the boys to eat lunch. They were so concerned with where she was. Chase said, she is at surgery by herself?? And they kept saying they missed her and couldn't wait to see her. Chase was saying it the most...which really warmed my heart. M and Chase probably get a long the least out of the 3 boys. And if you know Chase, he is just so laid back and not concerned with much. So to hear him talk about M this way was so sweet.
So here we are 2 days post op and she pooped tonight! That is what we wait on for days and is the only thing that gets you out with these kiddos! I have to say it is very weird that she is pooping from her bottom. I know I have 3 kids who do this but the only way I have known M is from a colostomy. Its just weird. So now the poop starts and with their bodies it doesn't stop for about 4 weeks from what I am told. They go pretty much constantly. (insert a deep breath) :) Then Dr. Levitt said they go from pooping all the time to constipated. The issue is diaper rash. These kiddos get it pretty bad. I have already been talking with my FB group about what are the best creams to help. So thankful to this awesome group!!! Once we get to the constipated part we will begin her laxatives. The key is finding the right mix for her to produce one to two bowel movements a day. From what I have heard, this can be tricky. We are hoping this will work for her. If laxatives aren't working and she is still having a lot of poop throughout the day, we may go to the nightly enema. This will keep her clean for 24 hours. We will have to just wait and see what works best for her.
With her urinating we are still trying to figure that out. The catheter in her urethra is gone but the suprapubic tube is still in. (attached to her bladder) Today they clamped the tube and are watching how she pees through the urethra. After 3 hours they weigh the diaper and unclamp the tube and check how much is draining from the tube. So far we have had two rounds of this and both were 60 cc's from the diaper and 90 from the tube. So not great. The nurses are telling me this could take awhile to train her body so we shouldn't lose hope yet. I am anxious to talk to the doctors tomorrow about the plan.
Sorry I have no pictures for tonight but I am ready for bed. I will post pictures tomorrow! (for those of you who are not on FB and haven't seen pics) :)
Thursday, October 9, 2014
Thursday, August 28, 2014
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!! :)
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!! :)
Sunday, August 24, 2014
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.
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.
Saturday, August 2, 2014
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!
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| LOVE this HUGE teddy bear in the library at the RMH!! Would love this for our house!! ;) |
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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. :)
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Thursday, July 31, 2014
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!!!
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!!!
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| Doing a little drawing on the iPad |
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| 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!! |
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| 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! ;) |
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| one goal checked off!! |
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| playing in the play room! |
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| She even walked back about half way! |
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| 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! |
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| Captured a sweet smile today when we were playing. It is so nice to see our Mayleigh come back! |
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| 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!! |
Tuesday, July 29, 2014
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. :)
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!
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