We were told that she would go back to surgery at 10 but they could not find this thing they call a blood band. It just has stickers on it with numbers (I guess specific to her?--not sure) so they had to do MORE blood work and make her a new band before she could go to surgery. This mommy was NOT happy. When my baby girl has to be poked for someone elses screw up I tend to get a little upset.
She ended up going back at 11 and the procedure started at 11:28. After sedated the ENT was able to look at her vocal cords and found that she has good airways BUT she has a paralyzed vocal cord. There is a chance that it could resolve the issue on its own but there is also a chance that it might not. If it does not-when she gets older she can have another procedure done that will help it. On a side note--the ENT just happened to be from Borger (15 miles from where I live); we only found out because he had to call us and noticed the 806 area code. AND the nurse told me that he read my blog (*embarrassing*). How he found it, I do not know. Haha.
After the ENT was done they started the scope part of the procedure. They ran the camera down and found out that she does not have pyloric stenosis. I believe at that point they decided to run a tube down her nose, bypass the stomach, and feed it into the intestines. I can not promise you the rest of this is FACT because we have yet to talk to surgery to verify and our new neonatologist can not answer any of these questions, but I will do my best from what we *thought* we understood when the surgeon briefed us right after surgery. Evidently placing that tube did not go as planned because at 1:00 they decided they would have to make an incision. I do not think that tube was going in like it was supposed to so they new there was some sort of obstruction that they would have to open her up to find/fix.
From what we understood, and this might be all wrong, Sunni's liver was towards the top of her abdomen when she was born and when she had her repair surgery. As time went on it shifted down along with everything else shifting as well. The falciform ligament is a ligament that attaches the liver to the diaphragm. Somehow the ligament put a kink in her intestines and nothing was able to pass through. I am not sure how they corrected this but they did and then got the tube to pass into the intestine, like planned.
The also inserted a g-tube through the outside of her belly into her stomach. This will allow Sunni to be fed the nutrition she needs directly to her stomach. She is going to have a big oral aversion which I have talked about in a few blogs. She does not like anything in her mouth whatsoever---not even her own fingers. She barely touches her own tongue and starts gagging. Going into this I was very against getting one of these tubes but it means that we will get to go home sooner and work on oral feedings at home. Feeding is going to be one of Sunni's biggest obstacles that will probably affect her from now on.
So you are probably wondering why she needed the tube down her nose and the one in her stomach. They are using the one down her nose to start off with. It feeds the intestines and the hope is to "wake them up" and get them to working. So poop is what we need! She needs to start having bm's. When that starts happening we will be able to try the stomach tube. When that starts working will will be able to pull the nose tube out and just use the g-tube. As far as bottle feeding goes it is probably not going to happen soon but we can always pray and hope for another miracle. We will be able to work on that at home.
And the H word. Home. We are very afraid to ask that question but I have a personal goal of being home early next year---like before the first of February. This all depends on Sunni and her progress with feeds and assuming that her breathing improves and stays that way. So join me in prayer to get my little family back together (in the Texas Panhandle) by January 31, 2013! Pray for poop and progress with feeding.
After surgery Monday she looked and did ok. She was just really out of it from the sedation, which is totally normal. The first time I saw her I was sick. The boys were done setting still and being quite at the hospital so I had to take them back to the RMH. Shawn sent me a picture of her when she came back to her room. I was just so emotional and sick over it. I was kind of blindsided by the g-tube. Shawn signed consent for the surgery and I was not there when they went over details. I was not expecting the tube. I knew she would be intubated but I guess I did not really think about it. All the tubes back in her when she had worked so hard getting them out one by one just gave me a defeated feeling and it felt like we were back to day 1. I felt so bad for her. When I finally got to see her in person that night I cried a little but not too much. I just cant believe how tough she is. I wish she did not know what pain was.
Tuesday she started swelling up, especially in the face, and was really pale. The swelling gave me terrible flashbacks of the last time when she got really, really, sick and started having seizures and the stroke. Tuesday was pretty hard. The dr was against giving her lasix to help her pee some of that swelling off for some reason. She was extubated Tuesday night. She did not do as well as we had anticipated. She had to have nose cannulas set at a higher oxygen rate than ever before. She was desatting often. We thought she might have to be reintubated. I had to leave just so I wouldnt have a heart attack. She ended up being ok and Wednesday morning someone finally talked the dr into giving lasix (hallelujah!). That helped the swelling a lot! She is still swollen and not looking quite like herself but she has improved a lot today. She isnt going to let surgery get her down for too long. Such a fighter!
My boys have been here since Friday and they have to go back home tomorrow. I am very sad about that. I will be alone for Christmas but I am just going to be thankful that I have Sunni to share it with and that we have been blessed. She is our Christmas miracle. Thank you God, we owe it to you!
PS--If I find some of this surgery info is inaccurate whenever the surgeons decide to come around when I am around I will update. :) And as always, forgive my grammar, run-ons, misspellings, etc.
|Sunni in her awesome onsie from Mrs. Lidia|
|On her way to the OR|
|Cooper drew this while Sunni was in surgery. So sweet. "God Help Sunni."|
|Right out of surgery 12-17-12|
|Swollen but still adorable :)|
|He adores his Sister <3|