FAQs

1. How do you have time to blog?
  
Well, I'm not really sure how I seem to have "extra" time. It just kind of happens. I think it's a combination of things, really. First of all, I am used to being busy. In my other life I worked as a nurse full time. Nursing is a busy job and I like being busy. And it requires a significant amount of multitasking. So, when I'm at home, I like to be doing something. I usually start the laundry, load and start the dishwasher, and sweep the floors. When Cohen is asleep I vacuum. I usually do the housework during the day so that when Cohen goes to bed at night, I don't have much left to do. I do also do my share of relaxing, don't worry.

The second thing is that Cohen is a really good sleeper at night. He sleeps 11-12 hours without getting up! Once he is down for the night, he's down. I don't have to worry about getting up with him and I get adequate sleep so I have more energy to do the above things.

Third, writing is like my brain. In nursing we have this saying "If it's not written down, it didn't happen" and sometimes I feel like that is my life these days. If I don't write it down somewhere, I forget. Also, if I write it down I kind of get it out of my system. Otherwise the thoughts just float around and around in my head and then I stay awake at night thinking and thinking.

Fourth, Danny is wonderful. I can send him to the store (which isn't true of all guys, I know). He cooks. He actually does a significant amount of the cooking. When Danny gets home from work, he gets his time to wind down, take a nap or go work out. Then when he is done, it's my turn. He knows that I need a little break too, so he will feed Cohen or play with him so that I can take a little time to myself. I go run errands or read a book or blog. It's a pretty good system we have worked out.

2. Is it hard having a baby on oxygen?

Yes and no. No, because it's the only thing we've known. We don't really know what it's like to have a baby at home without oyxgen. It's not hard because we have a 25 ft extension tubing for his oxygen that reaches almost everywhere in our house that connects to a 4 ft oxygen tank that stays in Cohen's room. The hardest part is just making sure it doesn't get stuck on things as you walk around. One time when Cohen was on the changing table I accidentally stepped on the tubing when it didn't have any slack and it pulled the stickies off of Cohen's face. He didn't appreciate it and I felt horrible.


Yes, because anywhere we go, Cohen's oxygen goes. He has a small, portable tank that we carry around in a little shoulder bag. If I go anywhere by myself it's a hassle because it's another thing to carry on top of his carseat, diaper bag, and my purse. If we are just out for a walk in his stroller we just put it in the lower part and it works pretty well. We have to call every week and order the oxygen we need for that week. Sometimes I forget to ask for the round circle stickies and then we have to use special paper tape which doesn't work as well. It's another weekly call and appointment (we have to be home when they drop it off on Wednesdays) that we will someday be glad to cross off our list.

3. Are you still working?

Yes, but pretty minimally. I usually work one day a week but only for 4-5 hours, sometimes longer. Eventually I will probably have to work more for financial reasons, but right now I am enjoying my time at home with Cohen that we have waited so long for.

4. How long will Cohen have to wear oxygen?

That's a good question, at this point we don't know. Some preemies wear oxygen for up to a year. We thought Cohen was getting ready to not wear his oxygen all day, every day. However, at his last appointment with his lung doctor, he showed us that he needs to be on it longer. Cohen will not turn blue if he is off his oxygen. But he does start to work a little bit harder when it is off. So, we see no point in pushing him to be off of it only to make his little body work harder to do "normal" things. We would rather give him a little extra help so that he can continue to use his energy to continue growing bigger and stronger.

5. What happened that was the reason the boys were born when they were?
Coming soon.


6. What is twin to twin transfusion?


I am by no means an expert on this, but I will try and explain it as best I can. Our twins were identical and were what are called mono-di twins. This means that they shared a placenta but that inside the placenta they each had their own sac or bubble as I call it. Because they were sharing a placenta, they also shared the blood vessels that gave them their fluid and nutrition. Sometimes when there are shared blood vessels, they don't share very nicely which can lead to problems.


In TTTS, one twin is considered a donor and one a recipient. In our case, Cohen was our donor and Carter our recipient. Cohen's bubble was very small, with very little amniotic fluid in it. This means that he was our smaller twin because he was getting less blood flow and fluid. At one point, Cohen had so little fluid in his bubble that they could see the sac just laying across his face. Carter was our recipient twin which means that he had a really large bubble with too much fluid and blood flow. Because he had all the extra volume, his little body was having to deal with all the extra fluid. He was our bigger twin because of the extra fluid and blood flow. Shortly before he was born, the fluid was starting to accumulate in and around his organs which is ultimately why the boys were delivered. Even though Carter was bigger, he was very sick. I have heard that often times the donor twin does better because their bodies are already used to having to work harder due to their lack of fluid and blood flow.

Here is a brief little overview of TTTS. There isn't a lot of great, easy to understand information out there about TTTS that I have found.