Guess what?!?!

Hannah was discharged from the hospital today! At day 9 post op, Hannah was free! This was beyond our wildest dreams. We thought she wouldn't be discharged until Monday, then we would have to stay for a week locally, and not get home until the second week of July. I love surprises like this! We have to stick around NYC until next week and get clearance from the doctor before we can fly home. It is so much nicer for her to lounge around the hotel. I think she is relieved to be out of there! She seemed to turn a corner over the weekend with her pain and mobility... And each hour seemed to get better and better and better!! She was moved out of ICU on Monday and did fabulous with the change. By this time, her personality was back in full swing. She started eating food, went potty like she needed to, was walking (although not well...) and was taking all her meds orally like a champ. From a hospital stand point, there wasn't anything else she needed. She just needs time to heal! We are still struggling with her blood pressure, but hopefully it will come down now that she isn't so stressed in the hospital. We got all her meds and medical supplies and came back to the hotel to chill with our family. Now that we have a light at the end of our tunnel, we are counting down the days until we leave. God continues to protect and provide miracles for our Hannah! 

This was Hannah yesterday. She cried, moaned and groaned the entire time she had to walk. But, as soon as we left today, she walked to the car from the stroller with no issues at all. :) stinker!

OT got her up and playing. She loved these magnetic dress up dolls... Which reminded me I have an entire box of them at home.

Hannah was excited to leave!

In the car on the way back to the hotel. Woohoo! I'm so happy to have all of this behind me. It looks like we will have a month of our summer to play after all!!

Day 5 post op

Here we are 5 days away from surgery. My family made it in town Friday afternoon. Hannah was still in pain this day and not really up for much. The kids had been in the car so much, that rick and I took them to Central Park to run around and get some energy out. They liked climbing the big rocks, but thought the bus ride was boring! Kathy stayed with Hannah through the afternoon and Friday night. Saturday was good for Hannah. It seems like she turned a corner with her pain. They increased her continuos pain meds so that she is getting more through her pump. This has been working! She didn't need Valium at all today and they didn't have to give her any extra pain meds. She was mostly comfortable. PT came today and made her walk around the bed. She hated it, but she did it! She also had her NG tube pulled today. I'm sure that is more comfortable for her. She seems more like herself today. She is interacting more and seems more settled. Hopefully this is our turning point! We are still in ICU because of her blood pressure. Hopefully we will move to the floor on Sunday. 

My kids are so exhausted! Matthew fell asleep on the way to the park. 

I'm so happy to have him with me for a week!

 My little New Yorkers :)

Hannah had a bath tonight and is watching a movie before bed. I'm hoping for a good night!

Day 2 post op, start of day 3

Day 2 post op was fine. She was a little more uncomfortable than the day before. Dr. Alam feels that her bladder is having spasms. They are giving her Valium every 8 hours, but she is still not settled. She is needing a lot more pain meds to take the edge away. She doesn't really like to move around, but it is important for her to start doing it! We played in bed a little bit and she watched a whole lot of tv! It was just a slow day with nothing major to report on. Her NG tube is hardly sucking anything out and the drain in her stomach is also producing close to nothing. These are all great signs. Her urine is becoming less bloody and more like normal urine. The one issue at this point is her blood pressure. We can't get it down. We struggle with her blood pressure anyways, so this is nothing new. She is on 4 different meds for her blood pressure. 2 of them are IV drips, so we are stuck in ICU until these drips can be taken off. At this moment, her blood pressure is where they want it. We just need it to stay like that so we can decrease the drips. I am hopeful that tomorrow is her day to move to the floor. The only  other thing we need to happen is her bowels to wake up! When she starts passing gas, they can start her on liquids. This will be a big milestone for us in the recovery process.

We had a little hiccup in our plans this week. My grandfather passed away Tuesday night and his funeral is on Saturday. We are trying to figure out how to get to the funeral with our family but keep someone with Hannah that can advocate for her needs and is current on her status. Hopefully she will be out of ICU, and a little more stable before the funeral.

This is a little gift she got from Rick's cousin. She had fun playing with her balloon and making a princess purse!

The PT brought her this tiara to bribe her out of bed. It didn't work, but she loved the tiara!

Surgery Update

Hannah's surgery went really well! We were told 12 hours, but then he added the bladder augmentation, so it was scheduled for 14.5 hours. He finished in 11 hours! Things were better than expected and we are thankful for that! He said we got "lucky" with a few things, but I think it was the answer to many, many prayers said for our girl! Hannah had a ureterocele. This is where the ureter comes into the bladder and forms a bubble. Well, Hannah's was horrible. He said it was so big, it was actually falling down into her urethra (which is where you pee). Hannah also had a duplicated ureter, where most people just have one ureter. It turns out that this giant ureterocele was attached to the bad ureter. So, once it was removed, he found that her good ureter was indeed good!!! He did not have to reimplant it! He was excited by this surprise! After seeing her bladder without the ureterocele, he doubted the need for a bladder augmentation. But, based on his experience, he thought it would be safest if he did it. So, her augmentation was small and went well. He did say that if we had not followed his plan and been so aggressive in treating her over the last year, that she would have lost her kidney by now. That means had she not been adopted, she would not have survived. Everything about Hannah has been complicated and specialized. There is no way this could have been treated in China. Hannah had a great night in ICU with a wonderful nurse. She has gotten so much special attention and is resting comfortably. PT was in early this morning and made Hannah sit up for a few minutes. She didn't like it, but she did it. We are well on our way to recovery. Let the countdown begin until we get to go home!

This is a picture of what Hannah had that was causing her body and kidney so much grief. Her ureterocele was HUGE. Dr. Alam said his residents really enjoyed seeing it. Ha! Dr. Alam also said he was excited he got to do this case because it was so different. We were excited he got to do it, too!

This was Hannah before surgery. She was in a great mood!

Tis is Hannah after her 11 hour surgery. We thought she looked pretty good!

Here she is this morning trying to sit up. 

I was reminded of this Bible verse today when I thought about Hannah and her miraculous journey to healing:

He continues to perform miracle after miracle in Hannah. We are so thankful!

New York update!

We have been in NYC since Tuesday. We met with Dr. Alam on Wednesday and actually spent all day at the hospital. We did her renal u/s first, then spoke with Alam, and then he did her urodynamics test. Although Hannah has been healthy (infection free) for the last 9 months, and growing strong, her bladder has worsened. Alam reviewed the u/s before talking to us, and the first thing he said when he saw me was, "we have some work to do." The urodynamics test confirmed what was seen in the u/s, her bladder is losing capacity. So, we added another procedure to our laundry list: Hannah will need a bladder augmentation on Monday as well. Everything else will continue as planned. Her ureterocele will be fixed and her duplicated ureter will be removed. The great news is that this should be it! This will be Hannah's last reconstructive surgery, assuming all goes as planned. :) On a happy note, her remaining kidney is healthy and strong. Her levels are also strong, so for that we are thankful! If we can get this bladder in shape, we will be in business. We had a little hiccup at the hospital. Hannah has a small heart condition and it is still unknown if it is serious or not... Well, it was enough to freak out the anesthesiologist, so at the last minute we had to get clearance from a cardiologist. That took up several hours in our day, but thankfully, all was well. Her heart looks good, and he said the same thing as the other 2 cardiologists: just watch it and consider genetics testing.

The first night here, some of my friends from the adoption community picked us up and took us to dinner in china town. It was fun! It was nice to eat with locals, who knew where to go and ordered all the food. Hannah, my mom, and I gobbled it all up. Delicious! It was also so fun to see sweet Josiah again. I last saw him 2 years ago. He was covered in chicken pox and couldn't go to school. So I played a game with him on his orphanage floor. His family is amazing. We had a great time together, and even got some Chinese ice cream afterwards. Yummy!!! Hannah, of course, was in heaven. They spoke to her in mandarin, and she would respond with head shakes. It appears that she still understands, which I find to be fascinating. I wish we were more aggressive in saving her language. 

We spent the next few days playing around in the city. We went to Central Park and took a carriage ride, went to the children's zoo, had lunch at serendipity, then went to FA0 Schwartz to look around. On Friday, we went to ground zero and visited the World Trade Center memorials, and then walked battery park. We also practiced on the subway, and lets just say we aren't proficient New Yorkers. Good grief, what a complicated system... I am certain a man designed it. ;)

On Saturday, we had brunch and just hung around the room. We ate at EJ's which is a popular choice around here. We got called around 1:00 that our bed was ready, so Hannah and I headed out to the hospital around 3:00.

Our first night in the hospital was a doozy and I was starting to doubt our decision to come here. We do not have a private room, so we get to listen to other people moan and groan in pain. The bathrooms in the room are for patients only, so parents have to cross the building just to PEE!! Also, the shower is in a public waiting room area. I am not diggin that! Then, they wanted to place a picc line in the room. I knew it was a bad idea, but I let them try. They gave Hannah meds to "relax" her but it didn't work. It was a horrible experience, and after several jabs and what felt like forever, I finally asked them to stop. We had 2 failed IV attempts and by this point it was getting late. Hannah, through all of this, had lost her mind and was climbing all over the bed and could hardly walk she was so loopy. The meds caused her to get really hyper, like a bad drunk! One minute she would be crying, then grabbing things in front of her face that weren't there, and then climbing around the bed like a monkey. It was exhausting. I couldn't leave her to get food, so she missed dinner and the next day was liquids only. The hospital couldn't order food, because the order already said liquids only. It was just one bad thing after another, and this whole time our roommate was moaning in pain. A NICU nurse came in at 10:30, hannah was asleep, and said she would only try one time for a stick. I was crying at this point and told her she got ONE try and then we were done until morning. Thankfully, she got it. I went to bed that night reminding myself that we are here for Alam... The only one capable of performing these procedures. I told myself to let it go and toughen up!

Today has been great. I am rebelling and using the bathroom in my room. :) Hannah's IV didn't go bad, and her bowel prep was easy peasy. She was happy and content most of the day. My mom came and sat with her so I could venture back to the Ronald McDonald house and shower. Hannah is in great spirits. She had a shower and took a little walk and went to bed easily tonight. I am hoping we can both rest because tomorrow is a big day! Her surgery is at 8:00 am, so prep will start about 7. I am so nervous but trusting the ONE who made her and who has sustained her. She is with one of the most skilled surgeons in the world. It will just be a nail-biting kind of day as we wait for her to get out of this 12 hour surgery!

Here are a few pictures:

This was Hannah today... Very happy!

There is an ice cream shop across from the RMH. She enjoyed an ice cream cone before we left for the hospital. By the way: RMH is awesome! I will write more about that later.

She needed one of these shirts! We will be frequent visitors to the city to visit with Dr. Alam.

Riding the rails!

Yummy!!! Frozen hot chocolate from serendipity.

Our carriage ride...

Our Chinese dinner... It was so yummy! I love this picture of 2 precious SFCV kids!