could this be it... Lucky #6

 Well Ally had her 6th surgery last Wednesday. We had our normal routine, feed her til midnight, then clears until 5:45. Get up at 3:00 so we can get ready and be to check in at 7:00am, after check in go to our safe little corner away from all the germs and wait for the them to come and take her back. Only this time I think we both knew in the back of our minds that she would be getting drains in her sides and back to strict tummy time. so we each took our turns cuddling her and holding her before they came to get her. once they came and got her, it was off to our other safe spot in the waiting room. the nurse called to update us and told us that her back looked really good so the doctor decided to close it up. I then asked her if he was going to put drains in and she said that he hadn't said anything about them. That got our hopes up, if he didn't put drains in then maybe there was a chance we would be able to hold her and put her on her back. about an hour an half later the doctor came in and told us what he had done. he closed her back up and put the vac back on and put DRAINS in her sides. He also said that we had finally accomplished a big hurdle and that was to get her back closed. he was very confident that it would stay closed and that this should be it. after he left we had mixed emotions, we were so excited to hear that her back was closed up and that this SHOULD be the last surgery. but then again hearing about the drains, we knew she was back on strict tummy time and now she had two new open wounds that could get infected. we waited another 45 minutes until they called us back to see her.  usually when I go back she is laying in her bed to drugged up to know what is going on. I hate seeing her staring off in to space cause she is so drugged up but then I like it cause I know she is not in pain. well this time I got back there and she was crying and whimpering. it was so sad to see. and even more painful that we can not just pick her up and snuggle her and comfort her. we got to the recovery room and made her a little more comfortable on a pillow and started to feed her. she finally relaxed and fell asleep.  they watched her for an hour then sent us home. we were nervous wrecks with these drains. what if they got infected? what if they got pulled out? or caught on something? or Deegan thinking it looks like something fun to play with and accidentally pull out? so many concerns. we got home and Ally was still not comfortable. we gave her some more medicine and tried to make her as comfortable as we could. which is not easy. it broke our hearts to sit and listen to her whimper. she has never whimpered like this after any of her other surgery's. She finally fell asleep, and for the next two days she slept and woke up to eat then back to sleep.

Friday she was more awake, she didn't care much to be on her belly all day and night, but then Saturday came.... she started to get really annoyed with being her stomach all day. Especially after i cath her. i get to flip her over on her back while i cath her and as soon as we flip her over she is all smiles and talking. but its only for about 2 minutes then we have to flip her back over, she gets really mad at us, and we feel horrible. Today she has hated it. she cries and cries. we know that she is hating it and who wouldn't. its getting to be frustrating for all of us! We go in on Tuesday for a checkup and hopefully the drains will come out. we don't mind if the vac stays on, that has really helped her back heal and we can at least put her on her back and sides with it on.

Here is what her back looks like now. they are not very good pictures. i cant get her to sit still. and for some reason the first one wont let me turn it the right way. so you can see her bum crack (poor girl every picture has her bum showing) so right above that is where they finally got the hole stitched up then if you can see on the sides of that are the drains. one is covered up, i forgot i was going to take a picture and had already covered that side up.

here is a closer look at the drains they are stitched into both her sides like this...

 

 

Then in this picture you can see how it comes out with a long tube then down into a grenade. so you can see what i mean when i say they are scary, especially when we move her around. you have to make sure they don't fall and hang then make sure you don't get the cords caught and also don't forget the vac machine and its cord.  

 

 

It has been really hard to connect and bond with Ally.  even though there is nothing we can do to change the situation and we are trying everything we can, we feel like horrible parents. she is stuck on her stomach, and when we hold her, she is laying on a pillow so we are not really even holding her. We talk to her, lay by her, hold her hand, rub her head and feet. but there is just not much you can do to try and comfort her or feel that bond. As a parent that has been the most difficult part about all of this. We love her so much and we hope that she feels our love. You can bet she will be one spoiled little girl when we can snuggle, cuddle, hold her, even put her in a normal car seat. that might not be the best choice we make when that time comes, but two months of not being able to do all those things makes you really appreciate every little second that you have to do it!

 

we are always wanting time to slow down, but we are really hoping that these next two days go by fast so we can get to her check up and hopefully hear that lucky #6 is really it!