A couple of days after Christmas Dougie had to have another eye surgery, this time it was in his right eye and they had to reattach the retina. This time they actually had to go in and cut on his eye. The thought of that was horrible. From that point on it seemed like it was a surgery for one baby or the other every couple of weeks. Jan 3rd Sissy had the lens removed from her right eye. Jan. 17th Sis had lens removed from her left eye. Jan. 30th Dougie had his lens and some scar tissue removed from his left eye.

I'm pretty sure it was February when Dougie came home for the first time. It was scary but it felt so good, like he was our baby for a change. It would be the first time we actually got to take care of him like he was ours. So we had a ton of classes. We had to learn all of his meds., we had to take cpr, we had to learn how to clean his ostomy and change the bag(which was NO easy task) and we had to learn how to put in his feeding tube and change it out every two weeks, we had to learn how to use the feeding pump, the oxygen tanks (portable and the ones for the house), and we had to learn how to use his saturation monitor. It wouldn't have mattered what I had to do to get this little boy home I would have done it. (just like I'm trying to do with Emily now)

It was difficult having him home I won't lie about that.We were trying to feed him with a bottle every day. We had to supplement what he didn't take by mouth with a feeding pump. There were a lot of sleepless nights. He had reflux pretty bad and even with meds. he still spit up quite a bit. The ostomy bag was a nightmare in itself. Their skin is so tender and we had to use this stuff pretty much like glue to get it to adhere to his skin. It was awful. BUT at the same time it was an answered prayer!

Feb. 21st Sis had surgery on her left eye to remove scar tissue. On March 3rd, Dougie had another eye surgery to remove scar tissue and put an oil bulb in his eye (it was supposed to help the retina stay attached). Through all of these surgeries the doctor still said there was hope for sight. When it came to Dougie the possibility was becoming less and less. That is a hard thing to hear that your baby may be blind. It was especially hard for my husband who of course wanted sports in his future. He dreamed of fishing and golfing and all the dad stuff. It was heart breaking for sure. At this point the doctor said his left eye was not going to have any vision and he was trying to save what he could with the right eye. Meaning he was hoping he would be able to see some light and maybe some shadows. I just thought that life was hard enough as it is and to be blind would be extremely hard. Never the less I would make sure he would be able to do what ever it was he wanted to do!

Around the second week of March Sis came home, of course with all the same equipment. I finally had all of my kids together. We were ecstatic to say the least. Most days I didn't even get to take a bath until Doug came home from work. It was non stop. And it was short lived. Bubba was already getting sick. He was starting to get what they called dumping syndrome. It's where he had more coming out in his ostomy bag and wasn't absorbing the nutrients, so he was loosing weight fast. Two weeks after Sis came home Bubba went back to the NICU. I was devastated. Sis was doing great for a while and then a few weeks after Bubba went back Sis started to show signs of respiratory distress and then spiked a high fever. We drove her back to glennon to get checked out and the doctors were worried that she was working so hard to breathe. When he told me that she needed admitted back to the NICU I seriously just about had a nervous breakdown. I could not stop crying. I felt like we had come so far and now we're back to square one, both in the hospital.

Our favorite doctor was taking care of Emily so that made things a little easier. Not much. He was pretty sure she just had a virus and a couple of days of antibiotics she'd be able to come home. She had been recovering really well and I remember calling on that Saturday and them telling us to come up and get her on Sunday. We were so happy. We called on the way to the hospital to tell them we'd be there in a couple of hours and when her nurse (Anna-whom we love) told us that she had a severe asthma attach and that they actually had to do chest compressions on her and intebate her I felt like someone had just punched me in the face. We didn't even know she had asthma.

So here it was mid April and Emily was deathly ill. They had to put her on tons of medicines and a high rate of oxygen just to keep her breathing. When we walked in her room and saw the tube back in her mouth it fealt like someone ripped my heart out. Not only that just down the hall was Dougie. Months went on for Emily and she had made no progress at all. In fact at times had gotten worse. I was a wreck, I couldn't eat or sleep or think straight. In May Dougie had came back home after getting his ostomy re-attached. He was doing good. Not gaining much weight but wasn't sick so we were happy about that.

I remember driving up to see Sis by myself while Bubba stayed with dad. I was so happy to see her but she was so sick. At this point they had her heavily sedated so she wasn't even moving. It was heartbreaking. I remember Dr. Sadiq (our favorite) coming in with a nurse practitioner and shutting the curtain behind them. He said he wanted to tell me where Emily was. She wasn't getting any better and that they had her maxed out on all meds and oxygen. He told me at this point she was basically on complete life support and had been for the last month. He told me that I should consider shutting her ventilator off and letting her go. Even now I'm crying as I'm typing the pain that comes with that sentence is unbearable! At that moment I think I hated him. How could he be telling me this. She had come so far and now he wants me to give up on her. I hurt so bad inside I literally was having trouble breathing. I told them to get out of her room and leave me with her. I shut that curtain and dropped to my knees and fell apart. How was I supposed to give up on my baby, how was I going to go home and tell my family what he wants us to do. It wasn't a few minutes after that I just had to get out of that hospital. I cried all the way home. I walked in my house and my in-laws were there with my husband and Dougie. I told them what the doctor said and fell in the floor and cried hysterically. I told Doug I couldn't do it. There was no way in hell I was giving up on her.

Another month passes and they are still telling me to shut her vent off. They tell me to do things I always wanted with her paint her nails, dress her up. May, June, July August and now September. Sis was marginally better. It was their birthday and we brought up a huge cake to share with the doctors and nurses with tons of gifts complete with a birthday dress and a princess tiara. Chaplain Judy (whom we love) came in and said a beautiful prayer for Sis. Everyone was loving on her and Bubba. They are practically their kids too. We sang happy birthday to them and opened her gifts.

Mid September Dr. Sadiq thought she was well enough to survive surgery for a tracheotomy and that since I refused to shut her vent off it was kind of a last hope. We agreed for surgery and not long after that she was transferred to the PICU. They handled the bigger kids. She was close to 30 pounds with all the fluid weight and had teeth, they thought it best she be moved. It was terrifying to trust her to someone else. Her first week in PICU they tried to move around her vent settings and she did not respond well to them at all. It was a daily occurence for them to bag her saturations back up several times. Our first week there the doctors came in and suggested that we shut her vent off that she was not doing well. Of course I refused. They told me that there might be a time when we are at home and they can't bag her back up. They didn't want her to die without us being there. That was an awful thought going through my mind. We stayed there in the hospital with her as much as we could. Some days were ok for her and others were terrible. It was a horrible roller coaster ride.

Meanwhile Dougie is having another eye surgery on his right eye re-attaching the retina and this time a gas bulb.