Honoring Grace

Just a quick post. First, your support is incredible. Thank you to all of our blog followers for the outpouring of encouraging words, support, love, prayers, etc. It means a lot. We've not been able to individually respond to many of your comments, emails, FB messages, voice mails, etc. But know that we are reading/listening to them.

The past few days have just been very overwhelming. Aside from recovering from major surgery (enough on its own), we've been thrust into a fast paced "race" to plan a funeral. It's physically and emotional exhausting. Some of you have been asking about funeral and/or memorial service arrangements. We've decided to have a small private ceremony for immediate family. I hope by choosing this, we are not offending any of you. It's certainly not our intent.

We're so very fortunate that Saint Mary's is allowing us to hold the ceremony in the Lacks Cancer Center chapel, allowing Brad's dad Mark to attend. He's not able to attend an off-site service, given he is still in the hospital, and it is so very important to us that he be a part of Grace's service. The spiritual coordinator at Saint Mary's pulled some strings for us, and voila!, our unique request was granted.

We've been receiving many offers of help, so very generous. And questions on how you can help. I'd like to encourage you to consider a donation in Grace's honor. We've set up a memorial fund in Grace's name with the March of Dimes "bandtogether" fund. If you feel moved by Grace's story and/or are seeking a way to give, please consider a donation. Really, in lieu of flowers or other gifts, we would be so honored if in Grace's memory, we were able to raise funds to help others deal with infant loss. Here is a direct link to her fund: Grace Clark Memorial Fund.

When I get the energy to blog a more extensive post, I'll do just that. I have so much to say about our beautiful little Grace, but need to be in the right frame of mind to do the post justice. Stay tuned!

In Loving Memory of Our Angel of Grace

Grace Evangeline entered the world at 2:51am and was taken back to God at 6:02pm this evening. We were blessed to have this time with our beautiful, precious daughter. Her lungs were too underdeveloped to sustain her life, though she fought ferociously.

She peacefully passed in the arms of her parents, surrounded in her living time with many in her family. In her short time with us, Grace has given us great joy. And sorrow in her passing. I can't come up with any other words right now, but I know with time this blog will be blessed with more information on her short, yet inspirational life.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The angel of life
wrote down our daughter's birth,
Then she whispered as she closed the book,
Too beautiful for earth.

Grace Evangeline

Guess who couldn't wait to enter the world! Grace Evangeline Clark entered the world via c-section at 2:51 AM, weighing 2 pounds 15 ounces. She was quickly taken to the NICU where she is stable on a ventilator receiving 30% oxygen. She is far from out of the woods, but seems to be improving with each update from the neonatalogist. Mom is doing well recovering.

Thank you for the continued thoughts and prayers as we enter this next journey in Grace's life. We will post more details on the blog soon but wanted to share a quick first photo (sorry it's not the greatest quality, from my mom's cell phone).

Gavin-isms

I've been meaning to type up this post for a while now. I wanted to take a few minutes to document the most recent happenings with Gavin.

Gavin is now 27 months old and just a typical two year old. His attention span lasts all of 10 seconds typically - moving from one thing to the next.

As far as activity goes, he loves just about anything that involves running, hopping, marching, climbing, etc . Climbing is a particular favorite, mainly when it's not an appropriate place for such displays of toddler-ism.

He loves imitating and seems to be picking things up so quickly and trying to replicate, another favorite. He will copy lines or actions from movies, laughing at himself as he repeats it. He plays a good "mean monkey" from Toy Story, you the know the one with the symbols who surveys the daycare? And he has a near perfect imitation of the "momma walk" which involves him sticking out his belly, hands on belly rubbing, and walking. Yes, it is the classic pregnant woman waddle. He does a flamingo, picking up one leg to stand on the other. And is frequently proud to show of his muscles when shirtless. He calls it "show 'em" because he's so proud to do it.

As far as toys go, he is very into animals, dinosaurs, anything Toy Story, balls and bubbles (his outdoor hospital activities), cooking in his kitchen set from Aunt Jodi's house (his number 1 fave right now, given his love for the movie Ratatouille), his Leapster Laptop for learning letters, coloring, and any sort of truck, particularly construction trucks. He loves his construction truck books from his birthday - and has many parts of them memorized. He is more imaginative in his play as well. He likes to feed his toys and offer them beverages saying they are "hungry" or "thirsty". He will also put them down to sleep for night time and then exclaim "all done" or "morning" when it's time for them to get up.

His language skills: He is just talk, talk, talking up a storm. He know talks in 4-5 word sentences and understands concepts like I, you, me. And his annunciation is really very good for a two year old. Occasionally, "r" sounds like "w", but not always. Here are some of his favorite sayings right now (you'll see some of them are due to our hospital situation):

"Oh yeah!" - a pretty standard response to questions.

"Right there" when pointing at something

"Okay then"

"Navin" or "Davin" when asked what his name is...doesn't quite have the "G" sound down, though he can say other words that start with a "G".

"Hi there" to just about any stranger who passes by (with a big smile and giggle, too)

"Construction trucks out there" (wow, that's 6 syllables)

"Go for chair ride?" when requesting to go for a wheelchair ride with me.

"Nurses buttons" when pointing at buttons he's not supposed to touch because they are only for the nurses. He's better about this now that he's learned.

"Elevator button", he likes pushing the buttons when we go on a wheelchair ride. It used to be "vator button", but he's evolved into the full word now.

"This thumb", a line from Ratatouille (the "this" is very drawn out).

The other day he said "I want bapes". "Bapes" are grapes. But I was just impressed that he used a full sentence to ask. Usually, it's just "bapes, bapes, bapes..." repeated in an increasingly piercing tone until some responds and gets him grapes.

"Thank you" is being used much more frequently now. We need to work on "please" and "you're welcome" a little bit more. Sometimes he'll even say "thank you honey" or "thank you sweetheart" because this is what we say to him when we thank him.

Oh, there are so many more sayings that are escaping me right now. Maybe I'll add more later. And I'm sure by tomorrow, he will have added even more to his vocab.

Gavin now can tell you what he would like to eat when you ask him, which is a big change from a few months ago when it was just a guessing game...that many times ended in him not finishing a meal. I think he likes to be involved in his food choices. In general, his appetite is just much improved this year vs. last.

Favorite movies include Ratatouille, all of the three Toy Story movies, and Finding Nemo. He's not as into Cars as he once was, but still loves other things Cars themed, like books and toys, just doesn't request the movie any longer. He likes watching Disney in the mornings - Mickey Mouse Club House, Special Agent Oso, Handy Manny, some pirate show (Brad would know the name, but it escapes me). Prior to me being in the hospital, we would limit his cartoon/movie time to just 30-45ish minutes per day. We're breaking the rules a bit now, given it is a quiet evening activity for all of us. We're breaking other rules as well, but I suppose it's not the end of the world - he gets his pacifier more than we'd like, stays up later than we'd ideal have him up. I suppose it is just a limited thing for now. Though I do dread the day that we "retire" the paci. Wish we would have done it a year ago. Live and learn I suppose.

So, I'll leave you with this silly photo. It's Gavin washing his feet in his new kitchen set. Why, you ask, is he washing his feet in the sink? Last night, after taking a wheelchair ride over to visit BaPa at Lacks, we came back to my room and changed Gavin into his PJs. His feet were stinky from sandals and sweaty feet. So, Brad gave them a quick wash in the sink. All day today when it was time to wash his hands, he also wanted to wash his feet. Boy, you do something one time an it just sticks. So, this picture makes me laugh. This kid makes me laugh! I pray that one day, his sister will make me laugh just as hard. God, please let his sister make me laugh...

Making Lemonade

It feels like a lot of lemons are being thrown our way lately. They say you should make lemonade, right? Well, I think I'll have a swimming pool full of lemonade in no time.

As many of you know, in addition to the challenges we're facing with our pregnancy, Brad's dad Mark is battling advanced prostate cancer. He was diagnosed about six years ago at the age of 52 - way too young, right? He went through the standard treatments over the coming years...surgery, radiation, hormone therapy. Enter Labor Day weekend last year. The cancer has advanced. Chemo was started in the fall through the end of the year, followed by a few months of second-line hormone therapy. He's not responded well to any of these recent therapies, experiencing advancing disease.

In April, Mark experienced a few set backs - anemia, pneumonia, increasing bone pain, terrible fatigue. He started a second-line chemo drug three weeks ago. Yesterday, he fell getting out of bed and has now joined me as a neighbor in the hospital. He was admitted to Lacks yesterday and is being assessed. His physicians think he may have a spinal cord compression, inhibiting his ability to walk and control his leg function. He's in for an MRI as I type.

As you can imagine, this is so very emotional. We adore Mark, his whole family does. Everyone who meets Mark is an instant friend. I remember meeting him for the first time almost 12 years ago when Brad and I started dating. I was instantly at ease and quickly knew that Brad got his caring, calm, laid back nature from his Dad (and his Mom, of course). And of course, his handy man abilities. Gosh, how lucky am I that both of Brad's parents did such a wonderful job of raising my husband!

Mark is such a vibrant, strong, on-the-go, three-projects-going-at-one-time king of guy. He's not one to sit still. Cancer is making him something that he's not.

This whole situation is extra stressful for us, given I'm confined to a hospital bed at the same time, trying to also manage a medically complex situation. None of this is what we had planned for the summer of 2011. We were hoping to add another little one to our family, a baby who would get to meet and know her wonderful grandfather, knowing that their time together would be limited. We would spend time at the cottage that Mark and Shirley bought last year and spent all winter renovating. Gavin would play with his cousins in the lake and we'd enjoy pontoon rides and bonfires at night. And then the lemons started falling.

I'm trying to see the lemonade in all of this. Trying desperately to find the good. But I'm having a lousy day. Yes, there are so many blessing around us, even in this difficult time. I'm trying to latch on to those things, the very simple things like watching Gavin color in a coloring book, commenting on what he sees in the picture. Or seeing his face light up when he walks into my hospital room. There are glimmers of wonderful things in each and every day. But a very pressing feeling of grimness at the same time.

So, you're reading this thinking "my goodness, could things get any worse?" or you're thinking I'm a nut case who just can't catch a break. I'd give anything to just make it all go away. To put it in a box, shove it in a closet, and forget about it. But I can't. I suppose I just need to keep taking it one day at a time, focus on the little glimmers of goodness...and pray my heart out that God guides us through all of this. He has a plan, right? Yes, I know that He does. It's just difficult to see sometimes.

Okay, I'm already feeling a little better having typed this all up. Blogging is a good emotional release for me. So thanks for listening! Please keep Brad's family in your thoughts and prayers. We all need strength to get through these very trying times.

Sayonara Twenties, Hello Thirties!

And I'm not talking my age, not for a few more weeks at least! Wednesday marked Grace's 30 weeks gestation mark, woohoo! 30 weeks feels like a nice milestone, though we keep plowing forward one day at a time, knowing that 31, 32, 33, and 34 weeks will feel even better. Really, each day feels a little better.

We had a growth ultrasound on Thursday. Good news, Grace is continuing to grow! Obviously, there has been much concern that her growth may trail off, given the low amniotic fluid and the critical role that amniotic fluid plays in normal growth of a baby. And the less than ideal function of my placenta supplying nutrients. Our last growth ultrasound was three weeks ago. On Thursday, her estimated weight was 2 pounds 5 ounces, putting her at the 15% percentile. She was 18% percentile three weeks ago, so not a significant change. She's on the small end of the growth curve, likely a combination of the pregnancy circumstances along with the fact that I just don't make large babies.

Dopplers (rate of blood flow through the umbilical cord and through the cerebral artery) are all still looking very normal, meaning that my crappy placenta is continuing to supply enough oxygen/blood to Grace. That's good.

What else? Round two of corticosteroids yesterday and today to help with lung development (assuming there is lung tissue there for the drugs to work on). From what I've read in the medical literature (this is what I gravitate to I suppose as a pharmacist), it is a bit controversial whether a repeat series of steroids is needed. The jury is somewhat out, so providers tend to weight the risks and benefits. Very little risk to me and Grace to receive it, but possibly very much benefit, so it makes sense. And it's so low cost that that's not a concern. Only downside is a sore arm from the 2mL, viscous (thick) IM injection in my arm - ouch! I suppose it's a small thing compared to all of the other poking and prodding. Yes, I still have the arms of an IV drug abuser, with a required IV site change every 4 days. Not my favorite thing in the world, particularly when it takes three attempts and involves blowing out veins. But again, not that big of a deal when put into perspective. I'm trying diligently to work on perspective.

I've created lots of nurse friends here, many of them stopping in to check on me even if they aren't my nurse for the day. I think that must mean I'm an okay patient. I hope so! I try not to complain, knowing that there are people around the world who have it much worse than I do. Really, I'm quite blessed. So, overall, my attitude has been positive. I'm still sad every day about being away from Gavin and Brad and other things that I enjoy. But overall, I'm counting my blessings and keeping my chin up. That is how I like to live life, so I'm determined to continue regardless of the circumstances. Every day that I wake up and am still pregnant and still able to hear Grace's heart gallop away on the monitor is a good one. By the way, her fetal monitor heart rate tracings have been superb as well. She is having lots of good accelerations in heart rate, as expected in a healthy baby as she gets older/bigger. And I've only had a few sporadic contractions show up on the monitoring, nothing to worry about and pretty normal at this stage as well.

30 weeks and 3 days gestation today...come on 34 weeks! If I'm able to make it to 34 works, my time in the hospital is half over today. I've been here about three and a half weeks, and have another three and half until the 34 week mark (June 8). Then of course a few days post-delivery for recovery (which still frightens me). Prayers that I (and my placenta, oh my lovely placenta) make it!

I'm working on another Gavin post...more to come soon! He's really what started my whole ventures in blogging about three years ago. As our family grows, he's sharing his blog space with Grace now, too. And the occasional mom and dad post! I have fun looking back on the blog, it's my virtual baby book for him. Good thing, as I've not been very diligent in keeping up on a traditional paper-bound baby book for him. I like that I have this blog as a place to look back on memories and photos, both good and bad. Thankfully, more good than bad. Thankfully!

A Grateful Mother's Day

Happy Mother's Day to all the mommas out there! I've enjoyed mine with my kiddos. I mean, how many pregnant moms get to listen to their little one on a fetal monitor for hours each day? Or see them on ultrasound every other day? I love listening to Grace's heart gallop away during the day. And seeing her grow and wiggle around on ultrasound.

And who couldn't love this face adorned with foam fish stickers (he did this himself):

I'm pretty blessed to have two wonderful little ones who have granted me the most important title in the world...Momma. It is by far my greatest accomplishment.

I've been thinking a lot about gratitude lately. I sit here thinking I have it so bad being away from family for weeks, dealing each day with the unknowns of this pregnancy. But there are so many others who are going through or have gone through much more difficult times. With the news focusing so heavily on the death of a horrific terrorist this past week, it reminds me of the pain that all of the victims and their families endured as a result of his and other terrorists' actions. Every day they live with the grief of losing their loved ones in such a tragic, unexpected way.

I think of the military men and women who risk their lives everyday for our safety, all the while away from their family and friends for months on end. All of the things they miss in their families' lives to generously give to their country. Meanwhile, I'm able to spend time each and every day with my family...and I'm not on the front lines of a war. While far from ideal, my stay in the hospital is not all that bad when I put it into perspective.

I'm grateful for all of our friends and family who have so generously offered us support and prayers. And those who have visited me or offered a meal for Brad and Gavin or sent a card or care package. It would be so much more difficult to deal with all of this without the support of people who care.

Another note of gratitude - my re-test for gestational diabetes came back normal! So, no diabetes for me after three days of carb loading and a re-test on Friday. Phew, one less thing to worry about! And all else is status quo medically. 29 weeks and 4 days today...can't wait to get into the "30s" on Wednesday.

So, today is a day of celebrating one of my most important roles in life - mom - and also of gratitude for the many blessings in my life. Gavin and Grace, I'm so lucky to be your mom. Thank for being such wonderful kids and allowing me to have this title. I love you both so very much!

Day 11

Today marks my 11th day away from home, in the hospital. Many have been asking how I am doing. I'm hanging in there. For the most part, I've been keeping myself busy in the downtime, thanks to work, visitors and other fillers. I have to say, though, I have this constant lump-in-my-throat-feeling, missing home and family.

Gavin is starting to ask more questions, wondering where I am. Brad said that when he wakes up in the morning or from a nap he'll ask for me. I wasn't really expecting this, given I'm not usually home when he wakes up in the morning or from naps; I'm at work, except weekends, I suppose. In a way, I'm glad he misses me and hasn't forgotten entirely about me. Or hasn't forgotten that I usually live at home and not in a separate place that he comes to visit. But it really makes me sad to not be there for him.

Medically, this past week had been going pretty uneventfully. I'm trying to be a "boring" patient. Fetal monitoring is looking good, dopplers on ultrasound are good as well. Then I had my one hour glucose tolerance test for gestational diabetes on Thursday morning - failed. Okay, no big deal, I'll do the three-hour and all will be okay. I passed the one-hour with Gavin, flying colors. I don't have any other risk factors for gestational diabetes. WRONG - I failed. SERIOUSLY?!? I was so bummed. Another complication added to an already VERY difficult pregnancy. Apparently, I failed by just 4 points on the 1 hour and 2 hour readings. The 3 hour reading was normal.

All of the sudden, I'm on the other side of this diabetes thing - it's me, not the patient I'm counseling. I even got called a "diabetic" when I ordered my breakfast yesterday, because I was told I couldn't have brown sugar in my oatmeal (even though it was well within my carb allotment). I'll never forget learning in pharmacy school that we shouldn't refer to patients as "diabetics", that's labeling. All of my Ferris classmate blog-followers likely also remember this lecture with Joan Rider our P3 year. We should call them "patients with diabetes". Well, I felt the effects of this first hand. I was so offended, I started to sob after I was off the phone from ordering. HOW DARE SHE CALL ME A DIABETIC! I'm a pregnant woman who happens to have diabetes. And why can't I have brown sugar - just a teaspoon? If I were managing diabetes outpatient, I'd be able to have more flexibility in my choices. Now I'm stuck ordering from a menu that doesn't give me as many choices.

So, somewhat encouraging news Friday - my doctors think that my glucose tolerance test results may not be accurate. Some patients who haven't been eating a lot of carbs prior to being tested don't respond well to the large glucose load in the glucola test. They think this may be the case for me and may re-test later this week after I've had a few days of carb loading.

I can tell you, I felt awful for about 45 minutes after downing the glucola. So nauseous! I happened to be watching the Royal Wedding (why not, I'm awake anyway) and was trying my best to keep the glucola down. I'll probably never forget where I was when Will and Cate were married! Hopefully, I'll get to tell Grace this story one day. I'll have lots of pregnancy stories for her. Boy, I hope I get to tell her some day.

I've been checking my fasting and one hour post-prandial (post-meal) blood glucose and they have been well below the threshold. My post-prandials are even running below the threshold for fasting. I just have a gut feeling that the results from last week aren't accurate. Though I know that they could be. My placenta may just be releasing too much anti-insulin hormone, causing me to have diabetes (gosh, this placenta is out to get me!). If I do, I'm very much hoping I can manage it through diet. It's not that different from what I already eat...except the brown sugar - can you tell I'm not over this!?! And I'm hoping that it goes away after pregnancy and doesn't resurface down the road, which will be a risk.

It's just so frustrating to have another thing going wrong.

On the up side, I'm fortunate to have very good providers taking care of me through the Center for Diabetes and Endocrinology at Wege. Funny, I have a work relationship with many of these health providers...now I'm their patient. I suppose I'm not immune.

Also on the up side, Brad and I had a date night on Friday, hospital-style! My parents offered to watch Gavin for the night (thanks MaeMe and BaPa!). We were planning to have pizza, needless-to-say that went down the tubes when I got the "Big D" diagnosis. Instead, we dined on hospital food overlooking downtown GR from the top of Lacks. There is a beautiful atrium and outdoor space at Lacks, that is hardly used, so it was a nice get-away from eating in my room...wheelchair ride and all! We also rented The King's Speech. We've been wanting to see it for months but have been a bit preoccupied. It was a fabulous story of overcoming adversity and the difficult road you have to take sometimes. Hummm, maybe a lesson learned without even knowing it! And the movie selection seemed even more appropriate given all of the monarchy happenings during the week.

Hard to believe it is May now. I'm very much missing my normal May activities - nice weather, spring yard clean-up, planting flowers and our veggie garden. These really are some of my favorite things. I suppose I'll have to wait until next year to do them. I requested that my gift for Mother's Day this year be for Brad to plant our garden so that I can take it over later this summer when I'm home. I LOVE fresh, homegrown veggies and don't want to miss out! And Gavin is a tomato monster, so I know he'll enjoy helping with it this year, and consuming the fruits of our labor.

Today, I am 28 weeks 4 days gestation. Grace and I just keeping checking off the days...one at a time! Thanks for keeping us (and Brad and Gavin) in your thoughts and prayers!

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.

The blog goes PINK

Brad and I decided to do something we never thought we would. We were fully planning to wait to find out the gender of our little one until he/she was born, as we did with Gavin. Given our new circumstances, we both were feeling a very strong desire to know whether we are carrying a son or a daughter. It seems more important than ever for our ability to plan appropriately. And given we are not able to tell gender from an ultrasound, but are having genetic testing done, we were able to find out.

We're elated to announce that IT'S A GIRL! We're having a daughter. Regardless of the circumstances and outcome of this pregnancy, she is our beautiful little girl. She will always be our daughter...and a member of our family - a daughter, a sister, a granddaughter, a niece...an angel.

I'm crying now, so I'm going to keep this blog post short and pull myself back together. A girl, wow! In honor of little GIRL Clark, the blog must go pink. I'll switch it back to a more neutral color soon, but for now, pink is what I'd like to see.

Also, as an important side note, the initial results of genetic testing are normal. We're awaiting the full chromosomal analysis. The amniocentesis didn't provide any results (fluid was too diluted with the saline infusion), so we were back in the specialist's office this past Monday for a different procedure, a chorionic villus sampling (CVS). Instead of taking amniotic fluid for the test, they took cells from my placenta. It has allowed for a better batch of cells for genetic testing.

Normal Everyday Stuff

With all that we have going on, it's easy to get caught in a loop of depression and anxiety. I'm trying not to. I thought it was about time to post some photos showcasing our ability to continue on with normal, everyday stuff. Stuff that brings me great joy in a trying time. So, here's a post honoring the simple things I hope never to take for granted.

Family movie time. Toy story 1 and 2 have been favorites lately. Toy Story 3, while a wonderful story that makes me cry, hasn't quite captured the attention of Gavin. Too boring and serious for a two year old I suppose!

I love this photo that came about by accident. We let Gavin play with our new little pocket camera (still love my big, bulky Cannon Rebel better for picture quality). He took this cool photo of half of his face. I just love this kid's eyes! He's going to knock the girls of their feet some day!

We've taken two work trips to Traverse City since learning all of the news about Baby Clark. We're fortunate that because Brad stays home with Gavin, they are able to travel with me when I need to go north for work. Traverse City has become one of our very favorite places to spend time as a family. I work during the days, then we get to hang out in the evenings. We stayed at the GT Resort and Spa (ohhh-la-la, sounds fancy, huh? Winter rates are a steal!) last month. Awesome pool area! Lots of fun!

My little swimming burrito all wrapped up!

Love this photo-by-accident as well. Again, Gavin playing with the camera (with a little help from Dad). I love it because it reminds me very much of Gavin's cousin Ava at this age. I look at his face in this photo, and I see Ava.

"Mix it, mix it." "Cook it". Gavin helping to make pancakes (aka "cakes").

Superbowl Sunday. Have I mentioned my mom is from the Green Bay area and is a huge Pack fan? Gavin just liked the cheese head hat. And I suppose watching the game too!

And this photo is cute to me because when I look at it, I see my brother Tim. Gavin has always carried a strong resemblance to Tim. This is one of those pictures that is almost an exact match to Tim as a toddler. Oh, and because he is so obsessed with cameras, we "gave" him our old one. Crazy to think that the new digital technology of five years ago has become so dated it now serves as a toddler's toy.

So, normalcy is good right now. Not to say I don't cry every day and have my sad moments. But all of the good is outweighing the sadness.

Thanks again to all of our blog-followers for your thoughts and prayers. I'm learning that we have complete strangers praying for us. Prayer groups I never knew about. People I've never met. It's very touching!

And for those who have reached out to us because you can relate to our story, it is very moving. You all are very strong women. If I'm able to have just a faction of your strength, I know I will get through this. In a way, it is comforting to know that Brad and I are not in this alone. Others have felt what we are feeling. Thank you for sharing your very personal stories with me!

In God's Hands

Primary diagnosis: dysfunctional placenta/partial detachment
Secondary diagnosis: parents with hearts broken so badly they don't know what to do except sob uncontrollably and just wait.

So, not the post I was hoping for. I'm 21 and a half weeks pregnant and I'm carrying a baby who will not live. You can tell I'm pregnant if you look at me, with my little basketball bump (similar resemblance to the one I carried with Gavin at this stage of pregnancy). I can tell I'm pregnant, feeling a little one squiggling inside me and all of the other accompanying body changes. But this pregnancy is very different than what I intended.

Yesterday, Brad and I had our second appointment with Dr. Balaskas, our maternal-fetal specialist. We were scheduled for an amnioinfusion (to replace amniotic fluid that's not there) and amniocentesis (for genetic testing). We walked into the appointment feeling very hopeful, certainly more hopeful than we felt when we first learned that something was wrong about seven weeks ago. We ended up spending three hours with Dr. Balaskas. He performed the procedure. Infusing saline into my amniotic sac allowed him to view things he couldn't see on our ultrasound two weeks ago, given the very low amniotic fluid.

Grim diagnosis. He suspected that my placenta may not be functioning appropriately when we first met with him. His suspicion was confirmed yesterday and then some. Typically in pregnancy, the placenta is fully "adhered" to the uterus. And the amniotic sac is also closely adhered to the uterus, creating a little pressure-filled environment in which baby thrives and theplacenta provides the necessary nutrients (and fluid) for development. What he found is that a portion of my placenta is detached, likely it never fully adhered in the early days/weeks of pregnancy when it was developing. This has caused the amniotic sac to not securely attach to the uterus.

Given this, when I was infused with saline, some of it temporarily stayed in the amniotic sac, suspending baby. But quickly, it diffused through the amniotic sac into my uterus (and ultimately out of me), allowing him to see for the first time on ultrasound the full story. Originally, two weeks ago, he suspected just placental dysfunction. He thought that continuous amnioinfusions may be an option to "full up the tank".

Now it is confirmed that I have placental dysfunction along with a partial detachment and an amniotic sac that is not working to keep fluid in. You can fill it up, but it will quickly empty back to it's original state. Needless to say, ongoing amnioinfusions are not an option. As I blogged previously, creating this fake environment of amniotic fluid was going to help Baby Clark's lungs develop more properly, in addition to helping prevent growth restriction.

We were told yesterday that our baby will not survive. Baby Clark's lungs will not be able to develop to a state that is compatible with life. I'm likely to go into preterm labor at some unknown point. It could be today, it could be three months from now. Alternatively, it is possible I will go in for a routine OB appointment and there will just be no heartbeat any longer. I will have a stillborn baby.

As you can imagine, Brad and I have hit an all time low. In one of my first blog posts on our pregnancy complications, I talked about the emotional roller-coaster. Well, the roller-coaster has parked itself at the very lowest point of the ride...and it's not moving. Over the past couple of weeks, I would have said optimistically that the roller-coaster was headed back up the hill. It's not.

Dr. Balskas assured us (again) yesterday that I did not do anything to cause this. This is a rare occurrence that spontaneously occurs in a very, very small number of pregnancies. Many women with this condition miscarry in their first trimester, maybe never knowing the cause. And it's not likely to reoccur, though we are awaiting the amniocentesis results which could reveal some sort of risk. Dr. Balaskas doesn't think the genetic profile will show anything abnormal, but it hasn't been ruled out yet.

Out of professional responsibility, Dr. Balaskas asked us (much more softly and kindly than what I type here) if we would want to end this pregnancy. Have an abortion. I very much understand he has an obligation to discuss this with his patients in our situation. But this is the point in the appointment that I began to sob the hardest. I tried to keep it together and just quickly said "no". He quickly moved on. The destiny of this child is not my choice. This is God's choice. I am an avid right-to-life supporter and being put in this situation first hand does not change my beliefs. As difficult as it will be, I will live every day with the unknown, not knowing whether God will take my baby that day. But I will not decide this for Him. He will decide.

I'm at a loss - so many questions. I'm over the "why me?" and the "this isn't what we had planned". I know those things are out of my control and only God knows the answer. I'm comforted knowing that this baby is in His hands. But I still have more practical questions, some of which just don't have definitive answers - How long will I continue to carry this baby? Do I have to live the next months feeling guarded, worried, apprehensive that at any moment my body will kick into preterm labor. I feel like a ticking time bomb. How do I go about normal things? I want to feel normal. Normalcy is so comforting. I want to do the things that I like - being a wife, being a mom, being a friend, going to work, enjoying the nice weather that is just around the corner...but I have this front of mind obstruction. Maybe this will get easier with time. I pray that it does. And what about our baby? Is he/she suffering inside this crappy environment my body has created? That is what I worry about the most. I'm so sorry it has to be this way Baby C!! We would have provided a wonderful life for you, one that every child deserves. And Gavin, oh Gavin, you would have loved him. He would have been such a good big brother.

How do I respond to questions from unknowing, good-intended individuals "Oh, you're pregnant. How exciting. When are you due? How are you feeling?". How do I answer that without coming off like a crazy, emotional basketcase. I've always thought of myself as being pulled together and professional...I don't feel those things at this very moment. I don't want to scare every person who asks me this with a reactive nasty response "oh, yes, I'm pregnant. I was very excited at first, but now I'm just scared and anxious, awaiting the death of my baby any day now. I'm due on July 20, but I probably won't carry to term, because as I mentioned, I'm just awaiting the death of my baby. How am I feeling? HOW AM I FEELING? Really, you're asking me this?" I don't want to be this person. Everyone is asking because they are genuinely interested and pregnancies and babies are generally such a wonderful experience. I know this first hand - I loved being pregnant with Gavin, every day of it. And really I have loved this pregnancy as just as much. I'm just, obviously, very saddened by the impending outcome.

So, that's my story. Sorry it doesn't have a fairytale ending.

Thank you to all of our blog followers - friends, family, strangers - for your outpouring of support. We could use your thoughts and prayers more than ever that "God grants us the serenity to accept the things we can not change, the courage to change the things we can, and the wisdom to know the difference". I need help with all of these things right now.

2 Year Photo Favs

A few of my favorites from Gavin's two year photo session...

Baby Clark Update

First of all - thank you, thank you, thank you - to all of our friends and family for your outpouring of support. We've received an abundance of emails, phone calls, FB messages, hugs, etc. letting us know that you are thinking of us and praying. I do think it makes a significant difference. While still stressful and emotional, the last week or two have felt much more normal. I thought I would provide an update, as so many of you have been asking...

We had our first appointment with the maternal-fetal specialist, Dr. Balaskas, on Thursday afternoon. The appointment went well.

I had my Quad test repeated on Monday and the results were available when we met with Dr. Balaskas. Apparently, my first Quad test was done a few days too early (before I was 16 weeks gestation), so the results from a couple of weeks ago showing increased risk of neural tube defect/chromosomal abnormality were not accurate. My current Quad is normal, which is reassuring, but not a definitive that there is no chromosomal abnormality.

Other good news - the "high tech" ultrasound is showing no anatomic abnormalities. Brain and spine look fine, kidneys are both working, correct number of fingers and toes, age is appropriate based on measurements. Heart rate was 158. Bad news is that my amniotic fluid is still very low. So, it was still a bit difficult for both the ultrasound tech and Dr. Balaskas to see perfectly. I must say, this ultrasound tech was fabulous! She did a great job of explaining everything as she was moving around, taking measurements, "this looks good" "this looks normal" "no concern here". I liked her!

Dr. Balaska was great as well. He spent about an hour with Brad and I talking, discussing next steps, possible scenarios. When do you ever get a whole hour of a physician's time? He thinks something may be wrong with my placenta which could be causing the low fluid. He sent me for additional labs yesterday (results pending), trying to rule out (or in) an autoimmune or coagulation disorder which can cause abnormalities with placenta function if not diagnosed and treated prior to and during pregnancy. I don't have any symptoms that suggest either of these types of conditions, but it's possible I could be asymptomatic and still have them. So, 14 vials of blood later (and some orange juice), we'll have this news in about a week.

Next step after that will be an amnioinfusion (injecting saline into my uterus) which will allow for a better ultrasound view (right now Baby is all scrunched up and kind of difficult to see - I think I used to be that flexible...many years ago!). The infusion will also allow for enough fluid to do an amniocentesis to test definitively for a genetic disorder. If all of that comes back normal, he said he may be able to do weekly amnioinfusions (along with bed rest most likely) giving the baby enough fluid to possibly survive and have more normal lung development, which is the main concern now. Baby Clark is at a critical gestational age for lung development right now. If he/she doesn't form alveoli (the deepest air sacs in the lungs), he/she will have pulmonary hypoplasia and likely not live long, if at all, after birth.

So, lots of information at the appointment. Dr Balaskas was wonderful. Very informative, honest, factual, but still caring. We liked him.

Probably a long road ahead, but we're trying to continue taking it one day at a time.

Thank you for the continued prayers and thoughts! It means a lot to us!