It goes without saying, but Julie is literally among a handful of Cystics who have undergone double lung transplant and then pregnancy. My job has taken me to NICUs around the country and as I learn about this very complex area of medicine, I am humbled. Neonates are extremely resilient in their fight to live. That being said, it is chilling as I am confronted with the complications of early term births on almost a daily basis. Julie is just under 28 weeks; a critical time for the baby's lung development. As we were looking at some research the other night around delayed cord clamping and other data around pre-term pregnancies and transplant we came across the registry for post transplant pregnancies. It is one of the oldest running studies in medicine. There were only a handful of patients (voluntary registry) that had Julie's situation. The possibilities of complications with an early term pregnancy are enough to get your attention. But to add to it the possibility and reality of rejection; It brought me to my knees. Anyone who has read this blog has seen we are very optimistic and have a "cross that bridge when it comes" attitude. That is not to say we don't get smacked in the face with reality every so often. Luckily so far we haven't been smacked at the same time. We started to have the kind of conversations we have every so often that I imagine a psychologist would be giddy over. I asked Julie about some worst case scenarios with regard to our twins and our unborn son. If she were to reject because of this pregnancy and leave earth in their young life, possibly just a few years from now, the twins would be old enough to remember her, and have to cope with losing their mother. Trust me, this isn't the first time we have had this conversation. If faced with this I asked her if she would have regrets about getting pregnant. Her answer was considerate but concise. 'Its not about that. It's about giving them life, no matter what the obstacles are,' speaking of both our twins and our unborn son. How profound that she sees it as it is. She is considerate of the trial it would be for our kids but not consumed by it.
The following morning I told Julie I had a hard time falling asleep (partly jet lag) thinking about the risks we are knee deep in. At some point the scripture came to my mind in a still small voice: "Did I not speak peace to your mind concerning the matter?" Without telling her this detail she told me 'Sometimes I think about those things (risks to her graft or the baby) and the scripture "Did I not speak peace to your mind concerning the matter" comes back to me.' I was blown away that a scripture that helped her prior to us getting pregnant among other times was the same one that came to my mind the night before.
We talked that night before about what life may be like for either of us if the other died. Conversations like this may seem depressing or stressful, but they are just the opposite. We all will be faced with it at some point. I believe in order to truly not worry about what you would do, and 'cross that bridge when it comes' you have to actually have a dialogue around it. We don't talk about it often, but it clearly would come up in conversation because of our situation. Before I married her I thought that I could be faced with this if I married a perfectly healthy girl; with Julie at least I knew somewhat what I was up against. The same types of conversations are had with our boys from time to time. It's amazing to see how they grasp the concept of eternity so easily. We of course do what we can to reassure them, but they are well aware at this point that we all die and we will be with each other again. Around all of this is the age old benefit risk analysis. For us, we have everything to lose if we don't go on this endeavor to have a family, especially if she lives a full life. If the worst comes, we have boys who were brought into this world in part by a fearless mother who has a will to live, and sticks to her principles amidst the strongest obstacles and personal anxiety. That is a legacy they will most definitely draw on throughout their life. You can't pick your poison, so go with your gut, ask God for some kind of confirmation and live your life.
Saturday, September 28, 2013
There's a back story to this picture...but before I go into that, let me explain the fact that we posted twice in 2012, and that this is the first post for 2013. Life has gone on. We have gotten so used to normal life that we take all of this for granted. Ingratitude is not what I am talking about; its worry free life, full of activities, the trivial debates of marriage, teaching the boys to ride bikes, poop, ski, play baseball, poop, fish, poop, and the like. We don't think about the gloomy bridge we might have to cross, its a waste of energy and time. As we have in the past, we cross them when we get to them, and look around the rest of the time. Prepare?? You can't prepare for most of the challenges life throws at you because you never think you will have to go through what you end up going through. So enjoy where you are, and let everyone out there think your life is mediocre so you can enjoy how great it is with the ones you love.
My last post was a bit of a downer. You have to understand that for about the first year or two we have been figuring out what to get worked up about. It's different for every patient. We really haven't had complications since the surgery; a lot of things we could have been stressed or worried about have come and gone. She had a drop in lung function about 6 months post that was an indicator of chronic rejection. Since then however, Julie has been stable, which is contrary to the very definition of chronic rejection. In reality, nothing changed anecdotally when it came to how she felt. A few test results changed, but that's it. We decided to just be positive and move on. One of the reason's we can let life go on is Julie's incessant attention to her vitals. To this day she takes them morning and night with every attention to changes documented for clinic visits about once every month or two. This attention to detail is a big contributor to her success fighting CF before the transplant, and her health now. It bothers her when we are out of town and she isn't able to check her blood pressure. I am so grateful for her compliance with her drugs and attention to details, because if it were me, I'd get complacent.
The back story to the above picture, is it has been on Julie's mind since she was a little girl; to not only be a mother, but to have a baby. As she grew into her 20's and became sicker than she ever imagined but was always taught to expect, this dream of having a baby waned. In 2008 we were given the Ultimate gift by my sister Aly carrying our baby boys for 7 months before they were born prematurely. To add insult to injury for her (pun intended) Aly offered to pump for us for 6 months. To be clear...JULIE's egg, MY sperm to form an embryo to be placed in vitro into a surrogate. I can't tell you how many people out there haven't understood that concept. Utah can be a weird place, but definitely not that weird.
Conventional wisdom would tell you to call it good here right? We have a family with two beautiful boys, my wife's life has been extended for anywhere from 5 to 50 years, so why on earth would we have another baby? There is so much at stake, so much to lose, for us and for our boys. My question to you is, Do you live life around statistics? Or do you live life around calculated risk taking. We all see things differently and make our own choices that we have to live with. Had I married a completely healthy woman, would I consider the rates of divorce, chance of losing a child to an accident, or disease before we decided to have children? Maybe the answer for some out there is yes; but for us, that is no way to live. The reality around this is Julie had it in her mind that she was born to be a mother. No amount of reason or rationale could stop her, except in the case of high known risk. Prior to the transplant, we knew how risky it was for her to carry a child, so we looked at other options from day one. Post transplant there are still huge risks, but they are far more unknown risks; there aren't a lot of women of child bearing age with double lung transplants, CF, and CF related Diabetes. There really aren't any case studies on such a specific patient. So in the end, you can't always go off of data analysis and studies, you have to go with your gut.
An appointment was made with Dr. Silver a high risk OB at the UofU Hospital. The meeting with Dr. Silver was spawned by Julie connecting to another double lung transplant patient who has had two children post transplant. They talked about how it went, adjustments to meds, complications, and so on. As with Julie's transplant surgeon, Dr. Silver put her worries at ease the moment they met. These two instances came to Julie as answers to prayers. They were the perfect demeanor for Julie; A surgeon who was confident but not cocky in Dr. Selzman, and an OB who was laid back but calculated in Dr. Silver. In the end, the person considering the risk the most and stressing about it wasn't her doctor(s) or me, it was Julie. Once she had that meeting with the high risk OB, another appointment was made at the Transplant clinic. Dr. Cahill came in to talk to her about her decision. We were both surprised by her approach. She said something to the effect of 'We didn't transplant you to tell you how to live your life, we transplanted you so you could live your life.' Julie asked her "Would you support me if I decide to get pregnant?" "Absolutely" she said. It was as if the entire weight of the unknown was lifted. Dr. Cahill was very supportive and almost anticipating it in the months to come. A few different times she would say "lets draw your blood for a pregnancy test."
As we came into the fall and continued to try, we decided to go to back to the infertility clinic in research park at the UofU. We found out Julie had stage 4 endometriosis. This wasn't the double wammy, it was the quadruple wammy. I began to wonder if we were forcing the issue. It was a source of stress in our marriage as many people can relate to. Julie was unwavering though. Despite being detached at times, I found my self jumping on the wagon with her and reminding her of certain priesthood blessings she had been given throughout her life, and all the specific answers to prayers we had received in the past. We couldn't get our heads around why we were going through yet another road block; we had to focus on what we knew, and what we had experienced. As soon as they told us the results and suggested laproscopic surgery, she said, "let's do that." In December she had the endometriosis removed and we were trying IUI (artificial insemination) the following months. After trying 3 times we began to talk about IVF (in vitro) again. I had just been promoted and it was requiring a lot of initial travel. I remember being in Irvine at my office on the phone with her. We were talking about doing IVF the following month as the doctor suggested and foregoing a 4th try at IUI the following week. We were coordinating my travel schedule. We decided to break up my trip that following week and go ahead and try a 4th time. For anyone who has had to go through the process of having a baby the non-traditional way using modern medicine, you can relate. For the rest of you, it's full of surprises and it's not usually on your schedule, even if your wife has a regular cycle like Julie does. Once she starts ovulating, you have to be at the clinic the following day, sometimes the same day to have the procedure done. She was supposed to start ovulating on Saturday night. I was flying out on Tuesday morning to Seattle. Saturday came, Sunday, Monday...she still hadn't started. I had changed my trip to Seattle to a day trip instead of connecting to my office in Irvine that night. I came home in time to put the kids to bed. She still hadn't started ovulating. After a few episodes of Lost she started ovulating around 11:00 pm. I had a flight out to Houston the next afternoon. We called the clinic first thing in the morning, went to the procedure, and I was on my way that night for the rest of the week. We fit it in an 18 hour block of me being home. It just all fell into place.
The next month when it came time for her to start her cycle, she was delayed. At first she wrote it off to a late ovulation cycle. You sort of get used to not getting pregnant when you try for months and sometimes years. I was out of town again for an entire week. She was supposed to start over the weekend while I was home. I called her every night asking, hearing that well anticipated, "no, not yet." I came home on the weekend and she was something like 8 or 9 days late. She had bought a pregnancy test earlier in the week, but wanted to wait till we were there together. I got to her parents second home in midway late Friday night. She had read somewhere that the test is more accurate in the morning since there were more hormones in the urine after sleeping. She wanted to wait so that she would not get a false positive. Talk about self control right? The following morning at 5:00 am she took the picture at the top of this post. I laid in bed expecting a shout of joy or a scream, but in true Julie fashion, I had to get out of bed and walk into the bathroom. "Look" she said as she pointed to it on the counter, "Cool, huh?" "Yeah, that's pretty cool. I knew it. Your freaking at 39 days since the start of your last period!"
The boys are very excited to be big brothers. When we asked them to guess what was in mommy's belly, one said a dinosaur, and the other said a baby iguana...this is before any ultrasound pictures. When we found out the sex at 16 weeks, Julie couldn't stand to wait and plan a reveal party with invitations like she normally would. She immediately planned something for our parents and grandparents the following day. We baked a blue circular cake, she tried to frost it when it was still warm and it fell apart. She called me up to help her out and we cut it into a square cake. We had about a dozen people over one Sunday for that party. Of the 12 or 13 people there, only two guessed it was a boy; Ben, and Julie's mom. Jack wanted it to be a girl so we could name it Sally after Lightning McQueen's girlfriend. I think his first crush is a car...but that is actually somewhat normal.
It has been a very normal pregnancy, with bloating, and weird pains lately on either side of her belly as her ligaments stretch. She didn't deal too much with nausea probably because she has so many measures to prevent it already. She has been tired at nights, and cleaning like a banshee. They say nesting doesn't occur till the end, but she is using that as an excuse to whip me around every weekend. I love her. I couldn't ask for a better pain in the neck to be married to. She makes me a better man and I'm lucky to have her as long as she can be here. Be it 2 years or 50, we are grateful.