Bulldozers and Dump Trucks and Cranes, Oh My!

One of Gavin's favorite things about coming to visit me is the construction site that happens to be right outside my window. He loves trucks, so this scene is just perfect for him. There are cranes, and bulldozers and dump trucks everywhere working to fix the road. He frequently requests to drive and/or touch the trucks. And yells "dump it" when the full dump truck leaves the site to empty it's pile of dirt. It's fun to watch him enjoy the view from his perch! He's a little construction site supervisor. I know that he'll like to look at these photos on the blog, too, so this post is for Gavin!

An Improvised Easter

Easter was day four for me in the hospital and not our typical way of celebrating a holiday. But we made the best of it. We watched Easter mass on TV and received communion in the hospital. That is definitely one thing I like about St. Mary's Hospital - it is faith-based.

Best part of the day was that the Easter Bunny stopped by. He had an Easter basket hidden for Gavin in my room, complete with Slinky from Toy Story and lots of other goodies, which resulted in a toddler on a sugar high!

Second best part of the day (really my favorite part) was that I was able to leave my room with Brad and Gavin for a wheelchair walk. We visited a little courtyard outside and then the atrium of Lack's which is just a beautiful, serene place. Today, we got out for another adventure over to Mary Free Bed. They have a play room for kids, complete with a Thomas the Train table set which was a huge hit. It was fun to see Gavin explore and have fun! It's difficult to get that natural fun reaction from a toddler when he's confined to a small hospital room. I love seeing him happy and having fun!


Probably Brad's favorite part of Easter was enjoying a nice cold Diet Coke with Lime. For the past at least 8 years, Brad has talked about giving up pop for Lent. This year, he actually did it. 40 days and 40 nights with NONE. If you know Brad, you know he loves his Diet Coke with Lime. It was quite the sacrifice and I'm very proud of him for sticking with it, particularly given all of the stress in our lives would have made it very easy for him to quit. Yay Brad!

Family photo op...pardon my frumpy look of no make-up, hair or nice clothes. I suppose I've checked them in for the coming weeks in exchange for yoga pants and tee-shirts.

And this photo was taken a few days before I moved into my new residence. We were decorating eggs and I wanted to make one for each of my kiddos. So, my official blog announcement of our daughter's name. We wanted something that signifies her story, so we've landed on Grace Evangeline. She will be our angel of grace, regardless of the outcome. I think her name is just beautiful!

As far as other updates go, all is okay for Grace and me in the hospital. I have my weak moments - missing my family and my home. Wishing I had the freedom to come and go as I please. And the hospital schedule is just no fun - keeping me up until 1am, checking vitals at 4am, lab tech at 5:30am, resident at 6:30am...sleep is a luxury around here. Not to mention my arms look like I'm an IV drug abuser. Never had so many pokes and IVs in my life!

On the up side, everyone here is wonderful! In fact, I had a massage and pedicure yesterday which was lovely. And I'm able to continue working part-time which is just great! I love my job, I don't like being away from it, but being able to continue working even just a little gives me a great sense of purpose. It's easy to fill the down time with other things, like watching TV, reading, checking Facebook endlessly...but something about all of these fillers just doesn't seem meaningful. Now, I'm able to fill a few hours a day of downtime with something that has a real purpose and challenges me - work. I like it!

I'm now having every-other-day ultrasounds which have been showing good things. Amniotic fluid is still low, no surprise. But Grace really seems to be doing well aside from this. I'm not an expert, so I won't try to say I know exactly what the MFM specialist is looking at, but he is always reporting good results. They are checking her to assure the blood supply from my placenta, through the umbilical cord, and to Grace is normal, given the sub-par performance of my placenta. And that her heart and brain are using blood/oxygen appropriately. Additionally, they will be tracking her growth, likely a couple of weeks from now compared to past growth assessments. They are concerned her growth may fall off, a sign that she is not getting enough nutrients from the placenta, and an indication for delivery. She's still breach, will likely remain that way, so I probably have a C-section coming my way. I'm nervous about this. It's major surgery!

Tomorrow I will be 28 weeks. We're praying to keep her inutero as long as we can to minimize the risks of prematurity, aside from the unknown lung development. I'm taking it one day at a time. I look forward to updating the marker board in my room with my gestation, currently says 27 weeks 6/7 days. Can't wait to change it to 28 weeks in just a couple of hours at midnight. Each and every day counts!

So, more to come. I have a fun post planned in my head that Gavin will love...stay tuned!

Wish List: Crystal Ball

Where to begin? Well, my new home indefinitely is St. Mary's Hospital.

I was admitted early Wednesday morning (2am-ish) after I awoke to moderate pain on the left side of my belly, radiating through my left hip and lower back. That was followed by hemorrhaging...sounding fun, yet? Brad and I immediately called the on-call OB and made our way to the hospital. My mom graciously awoke to our emergency call and was at our house within 5 minutes to stay with Gavin, who slept peacefully through all of this. How cool to wake up and MaeMe is there!

So, it was determined that my crappy placenta (yes, I will call it this, because that is what it is) decided to tear away a bit from my uterus, causing the pain and bleeding. Fortunately, the bleeding stopped quickly. Brad and I stayed in the hospital through the day for observation with concern that further tearing or abruption could occur, but then were happy to be discharged home. I've blogged previously about my desire to not have to be in the hospital. Thursday afternoon, we were able to meet with Dr. Balaskas (MFM specialist) again.

Another ultrasound - confirmed a small separation of my placenta. Something like 9mm. Then we sat down to talk with Dr. B. We talked about the second opinion we had received the week before, our discussion with the neonatologist at Spectrum and also our discussion with the neonatologist at St. Mary's (who we saw at length on Wednesday during our stay). The last time we had met with Dr. B was when I was 22 weeks pregnant and at the time it was recommended that we take a non-agressive approach with baby.

Of course, I've blogged about the differing opinions and the difficulty (to put it lightly) in deciding which approach is "right". Brad and I have been giving this so much thought. As you can imagine, it has consumed our thinking as of late. If only we had a crystal ball so we could see the right decision, the outcome. But there isn't one. And none of our health care providers have one either, as much as I'm sure they would like a crystal ball as well.

We expressed our interest in more aggressive management, given there is a possibility that our daughter's lungs may be developing and given I'm now farther along in the pregnancy. Dr. B told us the decision is ours (that's what everyone has been telling us) and that he would follow our decision. He told us that there is no middle ground, however. I can not be managed out patient if we decide that we are going to try to give baby a chance at life. I would need to be admitted and monitored closely. There is concern that my placenta may tear away more or completely abrupt, which is an emergency (and highly fatal) for baby and for my own health, as the hemorrhaging would continue at a rapid pace until I delivered via C-section. I could lose a significant amount of blood.

It makes me cry just to type this - really a lot of things make me cry lately, sob in fact at times. Being away from home and my family and all of the things I love makes this decision so incredibly difficult. And to know that it could be weeks worth of confinement in the hopital. Such a double-edged sword - I don't want to be in for weeks, but at the same time I do, knowing that each and every day counts to get baby farther in gestation and reduce the risks of prematurity. There will always be a risk of lung development, regardless of gestation. Her lungs may just not have developed due to the low amniotic fluid. But all of the other prematurity risks (neurologic development, retinopathy, Cerebral Palsy risk, the list goes on) are lessened with lengthened gestation.

With great anxiety and no real sense of "this is the right thing to do", I was re-admitted to the hospital on Thursday evening. I now have a separate residence from my beautiful little boy and husband. I live in a 12 x 10 ish room on a floor full of women celebrating the birth of their children, probably most of them healthy. I have little to look forward to, hopefully a healthy baby as well, but so much uncertainty. All of this could be for nothing.

Starting at 10pm Thursday, I was on a 24 hour fetal monitor so that they could track baby's heart rate and assure I was not experiencing any contractions. Dr. B is looking for any decelerations in heart rate, which could indicate my placenta is not supplying enough oxygen to baby, which would have devistating outcomes, not just on survival but also disability and quality of life. Seems like so many people focus on survival but forget about quality of life. It's top of mind for me.

It was a very long 24 hours. All night, the nurse had to keep readjusting the monitor because baby girl decided it was a good time to be awake and active (which I love, don't get me wrong). I was awoken countless times with the beeping monitor. Really, I wasn't even awoken, I was already awake. So, very little sleep. Fortunately, she cooperated more on the monitor during the day. And best of all, her tracings looked good and I was able to come off the monitor last night around 10pm. And I got a great night's sleep, ahhhh. Now, I will be monitored in one hour periods a few times a day. I'm hooked up right now, in fact. Funny, baby girl has hiccups right now, so I'm just listening and feeling them. Soaking it in. I remember Gavin having hiccups inutero quite frequently.

My back is killing me from the 24 hour monitoring period. Once we found a position that was working for the monitoring, I was reluctant to move at all. Not to mention my hospital bed is nothing to write home about. Not comfortable. So, my tail bone and lower back took a beating.

I haven't seen my OB yet today, and Dr. B is supposed to be stopping by as well. I'm hoping that they will at least let me get out of bed a bit, even just to sit in a chair would be nice. I know I won't be able to run laps around the hospital floors or anything, but some ambulation would be nice. I've never been this un-fit in my life! That's one of the (many) difficult things about all of this - I feel perfectly healthy, yet I'm living in a hospital. People in hospitals look and feel sick, I don't. Well, I might look sick - I said previously, I haven't showered yet since being admitted.

I know that I need to work on improving my spirit about all of this. If I'm going to be here, I need to make the best of it. But I'm not there yet, I'm not happy. My nature is to be happy and positive, so I'm praying that I get a little of that back. I need to make a list of all of the good things, things to be grateful for.

I need to find some activities to fill my time. Brad and Gavin have been great about visiting. But I can't help but feel guilty that my two year old has to spend time here. He should be doing two year old things like playing at home and outside (though the weather hasn't been all that great - maybe that goes on my list "I'm not missing nice spring weather while here", yet at least). He shouldn't have to be in a room that has all of these tempting buttons and gadgets that he's not allowed to touch and doesn't understand why. Not to mention we're exposing him to hospital germs everytime he's here. We've been hand sanitizing a lot.

Another question that has been consuming Brad and me - is St. Mary's the right place to be? My OB office (Advantage Health) is affiliated with St. Mary's. They are providing excellent care, as is Dr. B who also is more strongly affiliated with St. Mary's than Spectrum, so I'm very reluctant to transition that to new providers.

But Spectrum has a larger NICU and they do more OB. Is quality of care determined by size? We asked a lot of questions to determine the best place to be. In the end, I'm feeling it is more important to be in a hospital with providers who know me and know our situation. As far as the NICU goes, I still have some hesitations, though the neonatologist here assures us that they can provide the same care that Spectrum provides. The only exception is that the pediatric specialists do not come to St. Mary's. Likely a moot point in our situation, given we shouldn't need any surgeries or procedures that they provide. And if we did need them, as long as baby girl is stable, she can be transferred to Spectrum (which can be risky in itself, particulary if she's not stable).

So, lots of new information. I'm sure I'll have more to follow. And lots of time of my hands to blog, given I'm just sitting here.

As always, thanks for the continued support and prayers. We need them, boy do we need them!

Easter Eggs!

So many times, it's the simple things that bring great joy. Tonight, we dyed Easter eggs. Gavin had a blast experimenting with dropping the eggs in their "homes". For several months, he has known his colors. Tonight was a fun (shirtless) experiment with them.

Stickers!

This photo is absolutely disgusting, I know. But it was humorous watching Gavin eat just the dry egg yolk. Before you freak out, we were keeping an eye on him to assure he didn't choke. He wasn't a huge fan of the texture.

And, finally, a video capturing the messy project and Gavin's skills with colors! Notice how tidy Brad is attempting to be, but the toddler will have nothing to do with neatness!

Quick Update on Earlier Post

Quick update - much too tired for anything more lengthy. I am back at home, decided against being admitted after talking with the neonatologist at Spectrum. He was very informative on all of the possibilities for intervention. He had read through my chart before meeting with us. He is not optimistic that the outcome will be good. So, we're somewhat back to where we were before seeing Dr. Fee yesterday. Two physicians advising the outcome is not likely to be positive. One saying it could be. We need more time to think about all of this. And ask God for his guidance before deciding on such a big decision to go into the hospital for up to 8 weeks - I'm really apprehensive about this. I feel like there are five or so doors in front of us, one might have a prize behind it (maybe not), but it's so difficult to choose the right one.

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!

Siesta Key 2011

Vacation, boy we needed it! And boy did we enjoy it! We debated greatly going at all, but decided in the end that we needed a break as a family...and a warm up. So, we gambled (which we don't often do) and risked being away from home and our care providers to venture on our annual Siesta Key voyage. It felt like a normal thing to do, and normalcy is something I've blogged that I'm trying to keep in our lives.

This year's trip is seven in a row to this beautiful beach. We just can't get enough of this place. It was a little shorter than previous years - a compromise between not going at all and risking being away for an entire week.I didn't want to miss out on Gavin's reaction to the beach - ocean, waves, sand, etc. Glad that we didn't miss out because he had a fabulous time. This is his third year joining us on our venture - once when he was just 6 weeks old and then last year when he was just over one year.

Each year marks major advances in abilities. Last year, he was barely walking - stumbling in the sand. And the sand ended up in his face and mouth more than in the sand pail. This year, he was totally intrigued with running all over the beach, through the waves (he's pretty fearless) and digging in the sand with his sand toys. He wasn't much for allowing the castles to stand, rather had a blast demolishing them. I think by next year, when he's three, he will take more pride in the creations and want to keep them around.

So, here are just a few of the hundreds of photos I snapped this week. I decided to leave our bulky Cannon Rebel camera at home and opted for the more convenient pocket camera. Wish I would have just lugged the larger one along. It takes nicer photos that really capture the moment quickly vs. the few second delay with the smaller camera. None-the-less, they turned out cute!

$60 well spent on the portable DVD player for the long days of travel/airports.

Quality time with MaeMe and BaPa.

Sand, sand and more sand (did I say sand was a highlight of the trip?)




Gavin loved the feel of sand and water between his fingers.


The four of us...


Love the silly smile!



And a posed photo.

Me and my kiddos.

Gavin with his best buddy, Dadda.