My nightmare brought to life

It was brought to my attention today that I have slacked when it came to this blog. I guess maybe because of everything that has gone on since May, and also because I didn't think that anyone actually kept up with it. So here goes my attempt to catch up with everything.....

On June 4th, while visiting work on my way up to the Hospital to see the girls I received a phone call from one of the Dr's. He told me that they were having a hard time getting a oxygen reading on Brooklyn's feet and she also had a heart murmur, they decided to do an ultrasound of her heart just to check things out. What they found and told me over the phone was devastating. She had a congenital heart defect known as interrupted aortic arch and a ventricular septal defect. She was going to need surgery and the hospital she was at was not equipped to handle it so she needed to be transferred to U of M. My heart sank and I told him that I would be there in 20 minutes. I rushed to get there in hopes of seeing her before they sent her out. When I arrived I was hit with even more bad news, they decided to check Makinsey "just to see" and found the same exact heart defect. Both my girls needed to be transferred. I was in a daze. How could this be? What were the odds that both my girls, who we thought were fraternal, had the same exact heart problem that required open heart surgery? After they were sent to U of M, we sat down with the Dr's there and they explained what was going on and what we could expect. The girls were too little to have open heart surgery right then, and because issues could occur with their digestive tracts because of the heart problem they could no longer feed them formula. It became a tricky task to try and get weight on the girls without being able to feed them actual food. They were put on IV nutrients to help them, along with a lot of other medications to keep their PDA open till surgery. But that medication causes increased breathing, which burns calories and also the IV nutrients causes them to retain fluid, so then they were put on Lasiks to help get rid of the excess fluid. It was a very fine balancing act that lasted a month. At the end of June they decided that the girls had finally gained enough weight to have surgery. On June 28th, Brooklyn went in for her surgery. I was scared to death, I didn't know what to expect, and all I could do was hope and pray that everything went well. After they did the repairs to her heart and took her off by-pass, the surgen decided that repair wasn't they way she wanted it, so she was put back on by-pass and the repair was done again this time with a synthetic patch. Other than that little hick up, she did amazing. They warned us before we seen her that she would look terrible, but when we went back to see her she looked a million times better than the picture I had come up with in my head. She was weened off her medications fairly quickly and she was recovering well. On July 1st they sent Makinsey to the OR for her surgery. I was still scared but maybe not as scared as I had been the first time around. I thought I knew what to expect....but in reality I was about to be thrown for a loop that I never even seen coming.

Makinsey's surgery was terrible from the start. The weight that they thought she had gained had all been water weight, which made her tissues and organs soft and mushy. But by the time this was realized it was already to late, they had already started the surgery and there was no turning back. They told us that it wasn't looking good, but I just prayed that she would pull through. They told us that they didn't think that she would come off the by-pass and I just hoped that they were wrong. After almost 9 hours, they finally came and told us that her surgery was done, she made it off the by-pass but that it still wasn't looking very good for her. They told us that she looked terrible, they told us to brace ourselves for what she would look like but they told us the same thing with Brooklyn and I thought I was ready. I wasn't. She had a terrible reaction to the by-pass that caused blood vessels all over her body to burst. She was purple from head to toe. She was swollen, so swollen that they were unable to put her tiny little heart back in her chest cavity, so it literally sat on her chest covered with a protective plastic. They told us that she probably wouldn't make it through the night, that if we had planned on leaving the hospital we should tell her good-bye like it would be the last time we would see her. She was maxed out on all of her medications, if something were to happen there was nothing they could do to stabilize her. We slept in the waiting room that night. The next morning we were faced with a new problem, internal bleeding. They didn't know where it was coming from or if it could even be fixed. The offered to let us hold her. I cried and cried and cried as they sat there waiting for me to say something. Finally I just said "I don't know what the right thing to do is!" Her surgeon was there and she told us "I'm going to take her back to the OR, I'm gonna see if I can find this bleed and I'm going to try and stop it. That is what we are going to do." I will never be able to explain how thankful I am that she was there right at that moment to tell me what to do. She was able to find a pin size bleed and fix it. She told us that if Makinsey "could just make it through the night, that tomorrow will be a better day." And she was right, the following days were going well. She was being weened down on her medications, she seemed to be making progress. I was so thankful, then things changed again, literally in a blink of the eye. Dan and I had been up there all day, at 4pm after not eating all day we decided to head down to the cafeteria to grab something real fast. We were back in 45 minutes only to find that things had started to go down hill. Her temperature spiked, and her blood pressure dropped. It was the first signs of an infection. Again we were told how severe this was, and the bad news that they weren't sure if she could pull through it. They put her on antibiotics right away and they seemed to be helping for the first couple of days, then her urine output dropped. Her kidneys were shutting down. They told us that it could happen when the body has had so much trauma, they were just hoping that they would pick back up and start doing what they were suppose to. It didn't happen, they decided that she needed a temporary PD line, a temporary dialysis used on small babies since it was really the only option. Regular dialysis can't be used on babies. Their veins are to small for the machine hookups, and their veins also go out faster than an adult. Aside from the temporary PD line the only other option was a permanent PD line. We were again sat down with the Dr's and told they didn't see a good outcome from all of this. They wanted to know how far we wanted to push this. Obviously we didn't want her to suffer, but I said "We have to do everything we can, I won't be alright knowing that we could have tried something else and didn't." And so the temporary PD line was placed, and again it seemed to be working for a little while. But then it stopped almost all together, she was retaining so much fluid it was unreal to look at her. We moved on to the next step, the perminent PD line. They placed it on August 5th and told that we needed to wait 48 hours before putting it to use. On August 6th Brooklyn had to have a balloon catheter done on her heart because of a narrowing in her arch were the patch was placed. I should have known that something was up, because the Dr's didn't want to talk to us about Makinsey until we signed off and sent Brooklyn to the OR for her procedure. They told us the risks, death being on of them, but the odds were small and she needed it done so we signed the paperwork and off she went. After she was on her way they sat us down to talk about Makinsey....her tiny heart was stiff, the bottom chambers were not circulating the blood like it should. It was the reason for her renal failure, it was the cause of the fluid retentions, and it was fatal and there was nothing they could do.....nothing. I felt sick to my stomach, my heart sank, we were going to loose her no matter what we tried. Up until this point I kept thinking "What a little fighter she is! She is suppose to be here! Why would she have made it past everything she has so far if she wasn't suppose to be here?" And then something else came to my mind.....I just sent my other child to have a procedure done that could kill her too! It was the longest 4 hours of my life, waiting for them to come back with Brooklyn. To hear something about how her procedure was going. We never got a chance to use the permanent PD line. Brooklyn's procedure ended up going fine. They put the girls in a room together, their own special room in the PCTU that they decorated with butterflies. On August 7th our families came up to say their good byes, and August 8th Dan and I spent our time with the girls and said ours. We asked them to wait till we were gone before they unhooked Makinsey from the breathing machine, and at 6:05pm our sweet angel grew her wings and flew to heaven.

I will never be able to fully explain the roller coaster of emotions we experienced during those 3 months. To see on child doing so well, and to literally turn around and see the other struggling so hard. I have a part of me that says we did the right thing, and there is the other part of me that thinks what if we would have waited another day, another week, another month.....would it have made a difference? From what the Dr's told us, no...but what about miracles? They happen don't they? My heart hurts, and a big part of that hurt comes from knowing that Brooklyn will forever be missing a part of her. We were told that they had to be identical, they said no way they could have had the same exact thing and not be identical. They had that special twin bond you often hear about. The proof came from the fact that every time Brooklyn was moved away from Makinsey to the recovery area, she would have some kind of issue that would place her right back in the PCTU with her sister. The rest of the proof came after Makinsey passed away. Brooklyn did a complete turn around and 12 days later was released from the hospital. I still don't know if Makinsey needed Brooklyn or if Brooklyn needed Makinsey, I think they just needed each other. I like to think that whatever little bit of fight Makinsey had left in her when she passed away she left for Brooklyn to get better and get home.

I have more to say and write about, but I've run out of time for today. I will try to get back tomorrow and finish up.