At last we are home 3 days later! 3 of the most difficult days we've ever had. This is going to be a record long post of mine. I'll start from the beginning:
We planned to arrive at the hospital on Wednesday at 1pm since the surgery got moved to 2 hrs earlier than originally scheduled. You didn't really have any idea why we were going there, although I told you that we're going to go to see the doctor and he is going to fix your little problem so you won't have to take medicine every day. You seemed ok most of the day without eating (not very surprising since you are not a good eater to begin with). Only, right before we were leaving you started asking for snacks and we quickly put you in the car and left. I remember Daddy and I staring at each other for a moment before we turned on the car. We knew we were about to begin a really tough day.
We checked in, signed all the paperwork, and a few nurses talked to us about the procedure and took your vitals. First they asked you to put on a "special shirt" and explained that little girls who wore the special shirt got a popsicle later. You seemed very excited about the idea of getting a popsicle, and you quickly pulled off your shirt and asked for help to put on the special one. There was also a number of bright fake fish tanks that you seemed very interested in, as well as stickers. You must have asked the nurse who gave you a sticker to give you more about 10 times. She thought you were cute and couldn't resist allowing you to raid her sticker stash again and again.
Then we just waited until about 3pm, at which time the doctor walked in to talked to us about what to expect, and to see if we had any concerns or questions. As usual, we were concerned about the bladder catheter, and whether you shouldn't have it because we thought you would attempt to pull it out at your first opportunity. We agreed that he would simply make the decision during the surgery. After we talked he made a comment to you about how pretty your shirt was, and you immediately replied with "I want to get a popsicle." It was just precious. Afterwards the anesthesiologist came in with the nurse to meet you. They mentioned that we would be going to the "popsicle room" in just a few minutes. It was almost time.
At that point I gave you a huge hug and a kiss, and daddy asked if we could go in to be with you until you went to sleep, and they only let daddy come because of the gas and me being pregnant. Once you left the room, I was really upset, then I saw Daddy come back in and he was upset too. He said that you were happy to be going to the popsicle room and were very excited, but then when you entered the operating room you had a puzzled look on your face. You got to pick a strawberry flavor for your mask, and after Daddy lifted you up on the operating table, you got to smell the mask, but that after a few seconds of laying there with the mask on your face, you started to say "All done!".
We then both moped our way to the cafeteria to get some food and wait. After about 2 hours we were called from the waiting room and talked to Dr. Aligiri who operated on you. He said that surgery went well and you are sleeping in a recovery room where they will call one of us over to be with you once you start waking up. So off we went to another waiting area and in another 40 minutes they called us in. I walked in and could hear you crying, but as soon as you saw me I distracted you with little ducky good luck charms that Aaron gave you the night before and you immediately calmed down. You went in and out of sleep most of the hour or two that we waited there until your room was ready. You seemed really groggy after anesthesia which is to be expected, but you definitely recognized us. You had a few sips water, but you weren't able to keep that down.
Since only one parent was allowed in the recovery room, Daddy and I switched back and forth. While I was in the recovery room, you asked "where is Daddy?" and when Daddy was in the room with you, your asked "where is Mommy?" Grandpa David came and waited in the waiting room with us too, to keep each of us company. Also, our friend Jacob came to see you and he was able to just walk into the recovery area with his badge since he is a second year resident there. He read the surgery report and assured us that everything went well.
Finally we got transported to your room. Baba and Deda came to see you shortly after. The charge nurse allowed us both to stay in the room with you that night even though it was against the policy, however, there was only one chair that pulled out into a semi-bed, and a regular chair. Needless to say it was incredibly uncomfortable. You seemed to be super tired and out of it, so we were hoping you would go to sleep. That is definitely not something you or we did that night. You started to have bladder spasms, so they put you on Ditropan, and then your diaper wasn't wet at all, so a few hours later they had to pull the urine out of the catheter connected through a small incision directly to your bladder, that they put in during surgery. We worried about having this stent in from the very beginning thinking you would pull it out. Sure enough the first night once you got a bit more alert you wanted everything out, the stent and the IV. You started screaming in Daddy's arms saying "take it out!!!" and we had to put arm restraints on you so that you couldn't bend your arms. After all that, you finally fell asleep for a little while and so did we. Most of the night you did not sleep more than a few hours. We noticed that a lot of fluid was leaking out of your incision, so the nurse had to reinforce it with more padding. Thank God we were both there because I don't think we could have gotten through it on our own, I know I couldn't have.
The next day seemed like it was going to get better. You asked to go potty, actually went, and you had a few wet diapers too. This was the best thing you could have done, so we were very excited at the progress. Once the doctor heard that, they decided they would take the stent out, and lower your fluids so that you can start to want to drink things on your own. You walked a little bit and we went in the playroom, and you seemed to be doing ok. A few hours went by and you weren't drinking or eating, and the one time you tried a tiny bite (because Daddy and I were begging you to eat so that we could go home), you once again couldn't keep it down. So they decided to keep you for another night. I think you were very nauseous from the tylenol with codeine, even though they gave you anti-nausea medication, so we switched to regular tylenol.
Later that evening you seemed to be in a better mood, and I started to feel cramps in my tummy so my parents talked me into going home with them so I could get a few hours of solid sleep and come back in the early morning. It broke my heart to leave, but I felt like it was probably for the best, since we didn't want to go into preterm labor. I returned back to the hospital by 6:30 am, but did not get good news. You didn't drink or pee very much, so they upped your fluids again, and you ran a small fever. I found you sleeping in daddy's mini-couch with him. He once again had only a few hours of sleep. That morning was pretty miserable, not only did you not eat or drink, you stopped peeing. By noon that day it had become a big concern and if you didn't pee in the next hour, the doctor wanted to put a catheter in. You were clearly so uncomfortable. Any time we put you on your feet you must have felt the pressure from the bladder and cried to get picked up. You fell asleep on daddy multiple times. You were never as comfortable on my lap, it must have been my big tummy pushing up against yours, luckily you have an amazing Daddy, he knew how to comfort you, and make you feel better, and he helped keep me sane through out these crazy few days.
So for the next hour or may be even two we begged, bribed and did everything to make you go on a potty or in your diaper. You kept saying it hurts, so you were back on tylenol with codeine. Then you kept saying that you will try to go in your diaper, but it didn't happen. We don't know why... may be once you were off the stronger med, you felt the pain and decided you didn't want to do that anymore, after all it's one of the few things you still had control over... your bladder. The staff at Children's even set up a little lunch date for you in the playroom with another little girl who was recovering from surgery. They tried everything they could as well, including outright bribes of Disney and Dora books. Nothing could tempt you.
By 2pm, they had to cath you. Daddy and I felt defeated, frustrated, and extremely upset, the one and only thing we were trying to avoid was going home with any external things that you would be able to pull out. Now, having an extra incision for the stent that was pulled out a day earlier was totally pointless, but who could have known. We certainly did not want to watch you go through getting that put in again like they do during your yearly bladder test. You actually did ok with 3 nurses standing over you putting in a catheter. I was more of a mess. I am sure you were once again frightened, but we turned on the TV to have you focus on something other that what was being done and daddy hovered over you to try and distract you as well. It actually wasn't as horrible as we expected and we could tell how much better you felt once they relieved that pressure, your poor tummy was so hard for hours.
The doctors came in to talk to us an hour later and said that we would go home with it, they assured us that it's actually for the best because you won't have a chance to overextend your bladder and damage the repair that they had done during the surgery. They said if we want we can stay an extra night, or we could see how you do for a few more hours and decide to go home in the evening. We had lunch outside, while Grandpa held you in his arms and you watched a little girl run around on the playground. You no longer had a fever, you managed to eat a few crackers, and seemed like you were drinking too, so we decided it would be best to go home. They showed us how to take care of the bag, and got us ready to go home. Some of the things you constantly said while at the hospital: "Take it off!" - about the IV, "Don't touch!" - when we would open your diaper or touch any other part that would hurt, "Pick - a - me up!" - you hated the crib bed you laid in, and wanted to be held and comforted, "I want to go home!" - this broke my heart multiple times.
As soon as you realized we were going home, you seemed different. You started talking, and you even said bye, thank you, and blew a kiss to your wonderful nurse Jen. Grandpa helped carry you and our things to the car, and we headed home. When we got home, we put you on a chair and I offered you some yogurt and you gladly took it. I was shocked. Then Baba and Deda came, as well as Inna, Grisha and Aaron. You were very excited to see all of them, especially Aaron. After they visited for a little while, we put you to bed. We were going to keep you in our bed so that you can be close, but you said you wanted to go into yours, and once we laid you down, you didn't move much. I checked on you multiple times during the night and we emptied your pee-bag once and you didn't even wake up. You got up around 7:30am and were ready for your milk and requested to see "Beauty and the Beast". You complained about something hurting so we gave you some Tylenol. Your first day at home was wonderful, you ate, you drank a ton, and we kept you busy with all the new books, and toys that you got while at the hospital.
You sure got a lot of things while being there. Grandpa Dave was able to find Donald Duck for you, and that sure put a smile on your face. You've been asking for Donald for months... and I haven't been able to find one for you. You also got a Raggedy Ann doll from Terri - a coworker who passed it along to my mom, Baba also brought a Matreoshka - russian nested doll that you love to play with at their house to look for Malenkaya - the smallest little doll that you find at the very end of opening up all the other dolls. You got a ton of new books from others who came to see you, and a few from the nurses at the hospital. The staff there was just wonderful. What difficult jobs they have to take care of sick kids! Our families and friends have been so incredibly supportive throughout this whole ordeal. Everyone who knows and cares about you called us or our parents, texted, or messaged on Facebook to see how you were doing just about every day that we were at the hospital. We are truly thankful and appreciative for all of their love and support. It was such a tough time for us and we knew that we were in everyone's thoughts and prayers that you would recover well.
So back to being at home.... you wouldn't take a nap, even though you looked really tired. Baba and I tried for a few hours in our bed, your bed, the couch... you just wanted to play. You became so much more active, you were able to get up on your own, walk around freely (even though you had a bag strapped to you leg). We kept you in your footy PJ's all day so that it would hide the bag and you couldn't easily access it, and it actually worked very well. At first you hated when we did anything w/it, but then you discovered that it really doesn't hurt at all, so now you don't seem to mind it. I couldn't be more thrilled with how today went!!! It would have been nice to have you nap too, but hey... we can't have it all can we?
I refused to take pictures of you at the hospital. I think more than anything I want to forget that you were ever there. Daddy took a picture of you with his phone in the playroom the day after surgery when you were actually doing fairly well. So here is one from the playroom in your little gown playing with dinosaurs and another few after we got home.


First few minutes at home surrounded by your toys

The next morning reading one of your new books on the floor with Daddy