Second Opinion

Can't sleep, can't sleep, can't sleep...so I'll blog you all an update.

Brad and I met with Dr. Fee, maternal-fetal specialist at Spectrum, yesterday for a second opinion. We decided a few weeks ago that we wanted a second opinion, not because we distrusted at all what we were told by Dr. Balaskas. Or that he or his staff did not provide wonderful care of us - they did, they all are great! It was more for peace of mind and to assure we did not regret later not going for another opinion. We're talking life and death decisions here, geesh!

We went to the appointment fully intending that the Spectrum group would agree with Dr. Balaskas' diagnosis/prognosis. We were clear yesterday in our appointment that we're not looking for false hope. We heard information that we never expected to hear. Dr. Fee, while recognizing the severity of our situation, feels that there is a good chance our daughter will survive. Survive, really? Incredible.

Why does she feel this way?

1. Baby girl is now 26 weeks gestation,
2. There is some amniotic fluid present,
   
3. Amniotic fluid has always been present in baby's bladder and stomach (since my very first ultrasound) meaning that she is swallowing fluid and in theory should then be breathing it in as well (biggest concern, blogged previously, is lung development),
   
4. Genetically she is perfect, no chromosomal abnormalities,
5. Anatomically she looks near perfect - continues to grow in length and weight, though on the small side of normal. She's 16th percentile - but it could be that I just make small babies, given Gavin was only 10th percentile when born. All body parts are present and normal appearing, with the exception of club feet, easily corrected after birth with surgery, likely due to the low fluid and growth restriction. Granted, the ultrasound views are not perfect given the low fluid, so there could be something that has gone undetected anatomically,
6. Baby's thoracic (chest) cavity is measuring normal and the heart to chest cavity ratio is normal (the heart takes up about 1/3 of the chest in a normal pregnancy, and also in our case). This could be an indications that lung development is under way - no guarantees, just an indicator
   
7. Her heart as Dr. Fee says is "beautiful". She spent a lot of time watching it beat and function and it is just perfect. PS - I think it is beautiful, too, though I'm not an expert. But she is my baby and everything about her is beautiful, so her heart must be, too!
   

In Dr. Fee's words, "you should not write this baby off". She is suggesting something that will be INCREDIBLY difficult for me and for Brad and Gavin. She would like to admit me to the hospital ASAP (like tomorrow) for monitoring. She is concerned about the risk of infection/sepsis in me and in baby. As well as the risk of cord prolapse. Both conditions are emergent. In both cases, there may not be time for me to get from home to the hospital. If either of these occurred, they would deliver me by emergency C-section. If neither of these occur, I will be in the hospital until the earlier of the following: 1) I go into labor and deliver, or 2) 34 weeks gestation (around the beginning of June), as that is as far as Dr. Fee recommends letting the pregnancy go.

Dr. Fee wants us to meet with a neonatalogist tomorrow - these are the physicians who care for premature/unhealthy babies in the NICU. She thinks (and we agree), that it will be helpful to have a full understanding of expectations for the care baby will receive after birth. It's complex, very touchy care, so it's important to make an informed decision - particularly because our initial approach was going to be a complete 180, no aggressive care for our daughter.

So, this could mean up to nearly 8 weeks in the hospital for me. First and foremost, I will always do anything and everything possible for my children. I will do this if that is what is recommended. But that doesn't mean I have to like it. I DO NOT want to leave my family. I have a two year old and a husband who need me at home. I want to be at home. I want to go on walks in our new wagon with them in this Spring weather that keeps teasing us. I want to watch Gavin play and develop in his environment, home. So much happens in a two year old's world in just 8 weeks. I want to be here for my husband who will be challenged with the full burden of caring round the clock for a toddler and our home. Granted we have a leg up on this, given Brad stays home with him and has always provided the best for Gavin! I want the simple freedoms I so much enjoy - running errands, going out to dinner with family and friends, working (arg, this is something I will also miss incredibly and I feel like a disappointment to my co-workers)...the list goes on. Yes, Brad and Gavin and others can visit me (please do, by the way!) to keep me company, but it just won't be the same as being at home. Gosh, I never intended for any of this!

And I can't help but think of the cost and burden to the health care system for the expense of the care I will receive. Most people don't think about this. But I do. Obviously, I work for a health insurance company so I am acutely aware of the cost. I hate the thought that my employer will be absorbing this cost (I've already met my deductible for the year with all of the other poking and prodding procedures/etc I've endured). I've always prided myself on taking good care of my health, controlling modifiable risk factors for poor/costly health. Heck, I ran a marathon two weeks before getting pregnant! It's very difficult to deal with something like this - something I can not modify. It's completely out of my control, not caused by anything I did. But it still stinks.

Okay, I think I've ranted enough about all of the negative things of being in the hospital for an extended period. On the flip side, there is hope, potential for very positive things. We're now being told our daughter has a good chance at life! Boy, that emotional roller coaster is taking us on a heck of a ride. From doom to optimism to doom, back to optimism. I hate to let my guard down too much, knowing that this is so very serious - this is not a normal pregnancy. But I am very excited at the potential that baby girl could be with us!

Brad and I have been having conversations over the past months that no parent should EVER have to have. Planning for the worst, the death of our dear child - a funeral, burial, coping with the grieving process, explaining our terrible news to friends, family and co-workers. Not easy stuff. Difficult beyond words. But now there is a glimmer of hope. I want to latch on so badly, but also want to stay grounded and rationale.

So, we have big decisions ahead over the next 24 hours. What do you do in the case when two very well-respected specialists are offering different opinions? Do we seek a third? Do we have time for that? Would that just confuse it even more? My heart is telling me I need to be in the hospital, giving it my all for this little miracle. I think I will have major regrets and remorse if I don't take this path.

Can I bear to be away from home for so long, and then likely additional time split between the hospital and home when baby arrives and is spending who knows how long in the NICU? All of this coupled with a desire to spend as much time with family, particularly as Brad's dad, Mark, is fighting advanced prostate cancer and has experienced recent set backs. I want to soak in as much time with family right now as possible because life is just too damn short (sorry I don't typically swear on my blog, but it seems appropriate right now)! Can I endure all of this stress? I pray that I can. One day at a time, I suppose.

So, that's my update. If our decision is to go into the hospital, I'm sure I'll be blogging lots, given I will have more time on my hands than I know what to do with. I'm not sure what restrictions I'll have in the hospital. I'm praying it is not strict bed rest. If you have any suggestions for activities I can do while there to keep my mind busy, I'd love to hear. I'm not a sit-around kind of person. And I don't like TV/movies all that much. If you'd like to visit me, by all means, send me an email, FB message or give me a call. I'd love to have visitors. (ericarclark@hotmail.com)

Most of all, keep the prayers coming. I think they are working! We need strength more than ever right now. And thank you for the continued prayers, thoughts and support. It's amazing the outpouring of love we are feeling!