The "How" Question

"You guys are so young, how have you handled this?"

We hear this statement/question quite often and I'm not sure I have a great answer.

It hasn't been easy. Or anything close to easy.

We are young, our marriage is young (3 years this month!)

We feel like we are about 50 now. 

You handle it because you have to, you don't have a choice. There were so many days when I didn't think I could handle it. Days that I wanted to curl up in a ball and pull the blankets over my head and wake up and have it all be a really, really bad dream. We were told early on that things like what we've been through can take a serious toll on marriages. It's hard enough as an individual person to try and process all of the thoughts and emotions of having your dreams shattered and harder to try and make sense of it alongside someone else. I know that I could never do it alone though, that's for sure.

While Cohen was in the NICU and Danny was making the 2 hour drive to and from Seattle twice a week, it was hard. We had to be intentional with our time. It was hard to find a balance of spending time with Cohen while also making time for us to spend time together. Sometimes we spent the time eating, sometimes taking naps, sometimes crying and sometimes laughing. I remember the first time we went out to dinner and we just sat and stared at each other and talked about how strange it felt to be out eating in public acting like we were normal when in reality our world had fallen apart. Believe it or not, I have never been a big "feelings" person and I had to make myself tell Danny what I was feeling instead of just keeping it to myself. He couldn't fix me and he couldn't make everything go away, but he could be there for me. He is an amazing source of strength through all of it.

Coming home was a huge adjustment. We had been living apart for 5 months and had gotten used to surviving however we could alone. I was used to making my own schedule and having time alone. He was used to coming home to an empty house and passing the time however he could. We had to relearn to live together. It sounds strange, but we were apart for a long time during an incredibly difficult time. We learned coping mechanisms on our own and had to rediscover how to be together under the same roof.

We also had to learn to support each other in our grief. Men and women grieve very differently and we had to learn to respect that in each other. We try to be understanding of how the other may or may not be feeling. Danny and I had different relationships with and dreams for Carter. I carried him for 25 weeks and felt his every move while Danny felt his kicks and dreamed of playing football in the backyard with his boys. Even though we grieve differently, we share the fact that it was our son and that we are both dealing with an incredible loss. After one year I can say that it is different than it was now that Cohen is home and we aren't quite as fresh in our grief, but it's still hard. I still have to fight to not keep my feelings from Danny but to be open with him. Danny has never once made me feel like I need to "get over it" or that I'm not allowed to feel the way that I do and I think that is one of the greatest ways that he has helped me through this.

So, as for how we've handled it, I'm not sure if there is a choice to be made on whether we can handle things or not. What other choice did we have? To walk away from our surviving son in his time of greatest need? That doesn't seem like a choice to me. But, I get it, when I see others in impossibly hard situations, I think the same thing "How do they do it?".  It's pretty amazing the things that people can go through and still come out on the other side. We are by no means done "handling" everything, I have a feeling it is going to be a life long process that we go through together. I know for us, we had a wonderful support system and many, many prayers and by God's grace we have made it this far.

The Burning Question

This post has been sitting in my "draft" folder for a little while now because I hadn't decided if I wanted to put this out to the world (or 5 of you reading). Then last week, another preemie mom addressed this same question so she gave me the courage to post my own answer.  

"Are you going to have any more kids?" 

We get asked this question a lot. It always kind of surprises me because honestly, I don't think it's anyone's business. It doesn't offend me, it just seems like that is a very personal decision and not really up for public discussion, especially if I don't know you that well. I think mostly people are just curious because of everything we have been through with Carter passing away and Cohen's not so easy entrance into the world.

 I am going to answer this question because this blog is about a journey through grief, surviving the NICU, and learning to go on living. Danny and I have been talking about this very question for a little while now. We want Cohen to have another sibling, one that he gets to grow up with. I just want to be clear on this because it has been suggested to us in the past that children are somehow interchangeable and that "at least we can have more kids". We would never have another baby to replace Carter. No one else will ever take his place in our family.

We have been through a lot and it definitely plays a role in our decisions. If/when we decide to try for another baby, it is going to be hard. I know there will be a lot of nerves and fears. There's a good chance I will be a wreck. My heart tells me that I don't have the strength to ever go through anything like the twins' pregnancy again. There are a lot of questions that we may never have answers to. But, we also don't want to let fear or anxiety stop us from growing our family. If we had another difficult pregnancy and/or preemie, our decisions may change. We both have discussed the fact that we don't know if we could bear losing another baby or have to go through another NICU stay. Of course that's the risk you take with any pregnancy, there are no guarantees. We also know how in love we are with our boys and they are worth it all.

We would love to experience a positive pregnancy although we know it would never be completely free of worry because of what we have been through. There are things we want to experience, like the last 15 weeks of being pregnant. There is a whole trimester we have yet to get to and go through! I would like to be a walking pregnant lady and not laying in bed the majority of pregnancy. I want to wear maternity clothes instead of hospital gowns. We want a chance to experience "normal" and to hopefully find some healing along the way. 

We are just trying to take things one step at a time and let the Lord lead us where he will. So, there you go, I've given you your information...any other questions? :)

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.