What a weekend!

So this weekend has been pretty eventful. To the point at which I have been too emotionally spent to sit down and put it into words. This is my attempt to do so, so please hang on for the ride.
Friday during the day was pretty uneventful. Both babies were doing okay for the most part. Ethan had his daily rehab appointment at 2pm and seem to be showing some signs of improvement on his arms and legs. The developmental team and I were both curious to see if the progress that was made over the past week would hold up over the weekend since they don't do rehab on Saturday's and Sunday's.
Brady decided he should try and go to a school event since he has been M.I.A. from school functions since the twins came, (which is all school year for him so far.) He went to a football game and came home around 9:00 pm so we decided to head over to the hospital and hold the babies. We got in and they had decided that Madaline was anemic and that they were going to give her a blood transfusion. Ethan had been started on one as well during the day since he is anemic too.
We went to Ethan's bedside where he was showing signs that he was retaining too much fluid, so they had to give him a diarrhetic which should help resolve the issue. The nurse also told us that he had been having some "spells", and having a hard time coming out of them. This meant was that he was having a lot of BRADY's and needed constant stimulation to keep his heart rate up. Usually when you have a BRADY it is followed up with a DESAT, which means his oxygen levels needed to be brought up. However, this was not the case. It was just strictly his heart rate that was dropping and wouldn't come back up. At first, Brady was going to go ahead and try to hold Ethan, but he started up on another spell just as they were preparing him for some snuggle time. The nurse decided to bring the doctor over and evaluate him. At that point he couldn't figure out why this was happening, but wanted the nurse to keep a close eye on him. If it continued, the doctor said that they would have to re-intubate him and put him on a higher level of oxygen support. This would mean a step backward in his cares and no snuggle time for daddy. We sat there for a while to just watch him and he seemed to have calmed down for a while. Then the spells came back and he would not come out of it himself. The doctor and a large army came to Ethan's bedside and decided that the tube to help him breathe would need to be put back down his throat to his lungs. Brady and I sat and watched them thru the process. (I figured if my son could brave having this done to him, I could brave sitting there and supporting him. What else were we going to do? Sit in the waiting room and freak out as to what was happening). Not fun to watch, but even less fun to have it done I'm sure. They did give him a form of sedation to help relax him, but wow!
By this time it was about 1:00 am and Brady and I were completely and utterly spent on all levels. We peaked in to take a look at Madaline, but we needed to head home and try to get some rest. I called in the middle of the night to check on him and his spells seemed be improving and he was stable. My poor little man has already been through so much.
We woke up Saturday and Ethan was doing better. Brady went down to the hospital to check on the twins and I decided to hang back to try and get a couple things done. I also needed a little breather and spent a couple hours hanging out with the my sister Stephanie, sister-in-law Alix and nieces . I also got to see my best friend Miriam's gorgeous new baby Sofia that was born on Wednesday and may I say she is very cute. (Almost as cute as Madaline & Ethan). While visiting with her I got a phone call from the hospital telling me that they are noticing that there is something going on with Madaline. They noticed that her stool had some blood in it, she seemed more tired and her stomach was showing some discoloration. They started running tests to see what is going on. They were thinking at this point that she may have an infection as well (not the same kind as Ethan though). This type of infection would be in the bowel and if not caught fast enough could be a very bad problem. They stopped her feeds, took out her PICC line, started antibiotics on her and also started taking x-rays on her to make sure that there wasn't a whole present in her bowel. At this point there wasn't, but x-rays would need to be taken every 6 hours since this could be a fast moving infection. When Brady and I got to the hospital that night the doctor on call came to talk with us and told us that he is almost certain that she has a mild case of Necrotizing enterocolitis (NEC). This meant that she has a serious intestinal infection. They stop the feeds since they won't pass through the intestine well. This could mean surgery if it didn't improve. At this point we were going to wait to see if stopping her feeds for at least a week and starting the antibiotics with x-rays to make sure the problem is not getting worse, would be the course of action. And she was doing so well....
We got a call from the nurse this morning. She said the surgical team and the doctor came to have a consults with Madaline and both felt at this time that surgery was not necessary. She is a little more alert today. They have had to put in a new IV which she was not happy about. They tried 2 times and failed because she kept kicking them away. 3rd time was the charm. We will keep an eye on her over the next week and see how she does. Ethan seemed to be doing a little better from earlier in the weekend as well. The doctors will do another x-ray on him tomorrow as well to see how his chest and lungs are doing.
My mom was able to meet the babies for the first time today as well which was nice. And Auntie Stephanie join us as well. At this point we are limiting the visits to immediate family. Next on the list is Uncle Jeff, Aunt Alix, Uncle Kyle, & Aunt Casey.
I still continue to thank God for my babies everyday (more than once). I pray that they continue to have strength and courage to deal with all that they have to date and their future challenges. They have proved to be truly wonderful kids and strong fighters. I couldn't be happier or more proud. I also have not forgot the wonderful support that surrounds us everyday by family, friends and supporters that follow this blog. Thank you to everyone who is curious and concerned to know how our twins are doing. Please continue your prayers as I know they all count.
God Bless You!
Picture:
Top-Madaline & Mommy cuddling. And yes, that is a pacifier in her mouth.
Ethan resting after a longs days work (and believe me, it's a lot of work)