Our Daughter's Day

I will forewarn you, this is going to be a lengthy post. I really write this more for myself and Brad than for anyone, though I know those of you who follow this blog regularly, or even irregularly, may like to hear what I have to say. It's taken me some time to complete this post, longer than any other, as I fight off tears and emotions along the way. It's good for me though, kind of a form of therapy I suppose.

I'd like to tell you about the day my daughter was born, the day she went back to be with God.

Many of you have followed our story from the beginning, or maybe picked up somewhere along the way. I won't belabor the roller coaster we've been living the past several months, I think it's well documented. In short, we, like many young families, were looking forward to adding another munchkin to our home. Our pregnancy with Gavin was a beautiful, medically uneventful experience. And Gavin turned out to be the best kid in the world, so who won't want to repeat that? But my pregnancy with Grace was very different. It was absolutely, 100% a beautiful pregnancy that I in no way regret or wish I could change. In fact, physically, I felt very much the same as I did when pregnant with Gavin. I’m one of the lucky moms who didn’t have to deal with many of the typical pregnancy symptoms. I had two days of nausea/vomiting with Grace, none with Gavin, if that gives you a sense for how “easy” being pregnant was for me. But my pregnancy with Grace wasn't medically uneventful like it was with Gavin. God had different plans for our child.

We knew that the odds were against us that Grace would be born healthy or even born alive at all. We lived with this reality every day for about 17 weeks (we found out on a 15 week routine ultrasound). It's a heavy cross to bear, much heavier than any I’ve ever carried, but we tried to carry it with grace. We were realistic about the likely outcome the entire pregnancy, but as is human nature, wanted to hold on to that small glimmer of hope that she would make it. That someday we would drop her off at ballet lessons, take her shopping for her prom dress, walk her down the aisle to get married (to a man who would be heavily scrutinized to earn our approval), be grandparents to her children. We wanted so badly to experience all of these phases of life with her.

So, I spent five weeks in the hospital being closely monitored. This was the most difficult thing I had ever done - I was there fighting for one child, while my other child's mother was taken away from home. Really, it was probably more difficult on Brad, as he worked to keep our house functioning all the while taking multiple trips to visit me. As difficult as every slowly passing minute/day/week was, I must say, I wouldn't change this. I needed to be there for Grace. I needed to know that I did everything possible for her.

Monday, May 23 was a typical day for me in the hospital - 4:00am vitals, 5:00am visit from the lab, 6:00am visit from the resident, 7:45am visit from Dr. B, fetal monitoring and vitals throughout the day, lots of time in bed or sitting in a chair, a visit from friends that evening for a game night. Really, not any different than the preceding days. Everything was medically status quo for Grace and me. At about 10pm, I noticed my back was aching, maybe a little more than normal. Back pain was a common ailment, given the strains of bed rest and the not-so-comfy hospital bed. During my monitoring, I just couldn't get comfortable. I chalked it up to just the same old back pain I'd had for five weeks. Around 11pm, my nurse Marsha (one of my favorites), came to take me off the monitor. All looked good, Grace's heart rate looked great and no contractions were showing up.

I mentioned to Marsha that my back seemed to be bothering me more than normal. I told her I thought it might just be from sitting in the bed and that maybe getting into bed for the night and lying down would help. So, off to bed for night. No, wait, not off to bed for the night. This pain was intensifying and seemed to now be coming in a rhythmic pattern. It was just like the pain I had when I was in labor with Gavin, though it was setting in MUCH more quickly. I called Marsha to let her know that something just wasn't right. And I instinctively called Brad, with a gut feeling that "this was it".

I won’t go into the details of my labor. It was intense and scary. Brad and I were incredibly nervous. I’ll save these memories for myself.

2:51am, Grace was born. I was able to see the neonatalogist, neonatal nurse practitioner and nurse work on her to my left side. Brad was over there as well watching from a distance. SHE WAS PINK, yes, yes, yes! She cried a little and made fussing noises. Oh my goodness, she cried! She has lungs. They worked on her for 5-10 minutes in the operating room (maybe it was longer or shorter, my sense of time was gone), wrapped her up, brought her to me for a quick hello kiss and then she was off to the NICU. She was breathing room air. I laid there with Brad while my surgery was completed and was then taken to a recovery room. I was shaking uncontrollably. Brad wasn't able to go to the NICU quite yet. We were on pins and needles waiting.

Dr. Winslow, Grace’s neonatologist, came to my recovery room and gave us an update. Grace was stable on a ventilator and seemed to be doing okay. He mentioned that he could tell when he ventilated her that her lungs were small and a bit stiff. One lung was collapsed but it was easily fixed and back up and functioning. He was optimistic. She weighed 2 pounds 15 ounces. Because of the low amniotic fluid, she didn't have full extension of her arms and legs, but we were told that could likely easily be fixed with a little physical therapy. And that, as we were told by Dr. B, she had feet that were clubbed, due to the low fluid. Easily fixable. Really, the least of our concerns.

Dr. Winslow provided a brief update to my mom and Brad's mom, who had arrived a little earlier and were in the waiting room.

I was transferred back to my room, my residence for the past five weeks. Marsha was there and was so happy that Grace was doing okay. Another update from the neonatologist - Grace was down from 100% oxygen to 30% oxygen on the ventilator. Her carbon dioxide levels were a little higher than he wanted, but they were working to adjust everything. Things were looking good. Brad was able to go see Grace now! Thank goodness! And our moms took turns going with Brad. He brought back photos for me. She was BEAUTIFUL! A full head of dark hair and her skin was a beautiful pink tone. She looked like me when I was born. She was alive!

I had to wait several more hours before they would get me out of bed for the first time and let me venture down to the NICU. I couldn't wait, though I was very tired and trying to rest a little. My dad arrived and was able to go with Brad to meet Grace. I was able to sit up in bed and start pumping. Breastfeeding was hands down one of my favorite mommy duties with Gavin and I was so looking forward to this experience with Grace. It would be different at first, given she would be tube fed until she was old enough to transition. That didn't matter. I wanted her to have the best nutrition. And I was a pumping pro, given I worked full time and pumped countless times for Gavin's first 13 months of life.

Noonish - I was finally able to get up for the first time. Surprisingly, it wasn't that painful, though the "goodies" added to the epidural were helping with my pain. I got into a wheelchair and off we went to see my daughter! We got to the NICU only to find out that Grace was being worked on by the neonatologist and team - I can't remember exactly what the nurse told us, but it sounded like something had gone slightly wrong and they were working to fix it. I wouldn't get to meet Grace quite yet. Back to my room.

Dr. Winslow came with another update at about 1:45pm. Because each update in the morning was better than the previous update, we expected the same for this visit. But it was much different. It's really quite a blur what exactly he said. Her oxygen saturation was low and she wasn't responding to the interventions they were doing. She was not stable. He said that he knew from our earlier discussion (when I was 27 weeks gestation) that our wish was that if Grace was not responding to his interventions, we wanted to be able to hold and spend time with her uninhibited by medical intervention. We had a decision to make. My heart sank. Tears flooded my eyes. He wouldn't be saying this if he could "fix" her. He went on to say that we needed to get to the NICU now.

We went to see her, for me it was the first time. Brad had been in several times to show her off to her grandparents. The mood in the NICU was very somber. Nurses had tears in their eyes. I was wheeled up but couldn't see her well in her incubator. They opened up her incubator. She was so beautiful, so incredibly beautiful. Screw the wheelchair, I was going to stand. We touched her and talked with her, kissed her. I told her I loved her countless times. I told her not to be scared, but God knows I was. She opened her eyes, her tiny little eyes. She was moving a bit and would slightly grasp my finger. Her tiny little fingers and toes were so beautiful. Brad made phone calls to other family who arrived. We had Grace baptized. My brother Tim was there to serve as her Godfather.

My parents arrived with Gavin. We weren't sure what to expect, given he's too little to really understand what was going on. He might come in and be a typical toddler and want to wonder around looking at all of the interesting things in the NICU, uninterested in Grace and what was going on. But he didn't. By now, I was sitting in a tall chair. Gavin came to sit on my lap. This was the most precious moment of the day. He sat on my lap for a good 15 minutes looking at Grace, touching her so gently, talking about her. "Baby sweeping (sleeping)" - he kept repeating this in his sweet little voice. He pointed out her body parts - "hands", "feet", "knee", "belly", "hair". He was so calm, calmer than I've ever seen him. He noticed everyone around him crying, "MaeMe, crying" "momma, crying", etc. He knew something sad was going on. I talked with him about Grace and that she was going to be going to heaven soon. God was going to take care of her. That God loved children. And that she would be watching down on us from heaven. I told him not to be scared.

We were able to get a good number of photos, both of our own and some from the hospital's photographer. One regret, we didn’t have our “nice” camera, only the small pocket camera. I really wish we had had the better one. But I can’t change this.

The whole time we were there sitting with Grace, we were not rushed. We were given as much time as we needed with her. I have no idea how long we sat with her, again, time was a blur. It really was a very peaceful time. That is what we wanted if it were to come to this. So many times, death is viewed as a very morbid, painful experience. It was not this way at all.

After spending time with Grace on the ventilator and other devices, it was time to hold her. Holding her meant we were making the most difficult decision of our lives…to end medical intervention. But we wanted her passing to be peaceful, for her to be swaddled in love. Not to leave this world in an incubator.

The staff in the NICU arranged for us to have a private room where we would spend our final time with Grace. The photographer was there again to photograph us holding and loving Grace. While maybe morbid to some, I will cherish these photos forever. Brad and I had time with Grace alone. We loved on her, held her close, talked with her. It was just beautiful. Our family was then able to come in and hold Grace, talk with her. It was so very peaceful. But Mark, Brad’s dad, wasn’t able to be there. He was confined to his bed at Lacks. We desperately wanted him to meet his granddaughter. I asked Shirley if she thought that Mark would feel comfortable meeting Grace if, by chance, they would allow us to make a trip to Lacks. That is just what we did. Gosh, the staff in the NICU were wonderful. Not once were we told “no, we can’t accommodate you”. They had already broken the rules and allowed more than two visitors to come see Grace. Now we were asking to take our daughter all the way over to Lacks. My mom went to ask the staff if this would be okay. And they didn’t give any sign that it wouldn’t, instead, instantly responded “yes, we can arrange for that.”

So, off we went to Lacks escorted by my nurse and Grace’s NICU nurse. This was one of the most memorable moments of the day. Grace would get to meet her grandpa. Special beyond words. Mark was so thankful that we brought her to meet him. He held her and had his time with her. It was so special. I will NEVER forget this.

After visiting with Mark, we headed back to my room to spend a little more time with Gavin, my parents, brothers and my sister-in-law Karen. Shortly after they left, Dr. Winslow arrived and pronounced that Grace had passed away – 6:02pm. In all reality, she likely passed peacefully some time before this in our arms. Only God knows the exact moment. Regardless, it doesn’t matter when it happened, just that it happened while surrounded in love. And that it was so peaceful and memorable.

My best friend Elizabeth was able to come to meet Grace and help us give her a bath. We dressed her and then Brad and I had more time alone with her, never rushed to give her up. We read her a bedtime story, “Guess How Much I Love You”, one of my all time favorites and a favorite of Gavin’s. Our time with her throughout the whole day was so special. I am so grateful that we had her, even for just a brief time. She left our arms around 10pm.

Brad stayed the night with me in the hospital. And fortunately, my very compassionate doctors, with tears in their eyes, “broke” the rules and allowed me to be discharged Wednesday afternoon. Both they and I knew that I needed to be at home with my family. That my recovery would be best there. It was very nice to go home, I hadn’t been there in five long weeks. There is something about being with the ones you love that brings healing.

We entered into a very busy few days, planning Grace’s funeral and burial. We met with our priest and the spiritual coordinator at Saint Mary’s the morning before I was discharged. We had a unique request for Grace’s funeral. Given Mark would not be able to leave Lacks for an off-site service, would it be possible to have the service in the chapel at Lacks? It was imperative that he be there. With a little “sting pulling”, it was arranged. It had never been done before. But, then, these unique circumstances had probably never presented before.

We met with the funeral home and cemetery to plan everything. It all seems very surreal – who thinks that at the age of 30 you will be planning a funeral for your child. Questions to answer that you never imagined you’d have to address. One important thing to us was that we assure that someday, Brad and I would be able to join Grace in the cemetery. I’m in great comfort knowing that we’ve arranged for this, though it seems strange to be buying plots at a cemetery in our 30’s. We will all be reunited one day in heaven. And our physical bodies, as well, here on Earth.

On Saturday morning, surrounded by our immediate family, we laid our little girl to rest. It was a beautiful service. We were asked if we would like to help place dirt over Grace’s casket as she was being buried. Brad and I and many in our family placed a handful of dirt. And Gavin, too. Then a man arrived with a shovel to begin burying her. I looked at him and he had tears streaming down his face. He does this job every day, yet is brought to tears by the sight of that tiny little casket. So touching. But the most memorable moment of the day, that I will never forget, came as Gavin, who as I’ve blogged previously loves construction and dirt, went to help him carry shovels full of dirt over to Grace. I told him that the dirt would keep Grace safe in the ground. It was so sweet and is something I look forward to telling him as we talk with him about his sister in the future. That photo is etched into my mind. A tiny little two year old burying his sister. I never would have thought I would be experiencing this.

Brad and I are now working to design our gravestone. Again, something I never in a million years would have thought I’d be doing a week before my 30^th birthday. We’re working to make it so very special. In a way, I’m taking great pride in this work. I’m not able to mother my daughter any longer, but in a way I am. We’re making sure her physical home is just perfect. I have lots of ideas for ways to make it special. We went to visit her today after church. The temptation to visit every day, ten times a day, is intense. I wish I could put up a tent and just live there so that she is not alone. We’re going back tomorrow for a Memorial Day mass and another visit. I’m not sure how I’m going to be able to stay away.

Aside from the busyness of the past few days, we’re working to heal as well. Gosh, I love my husband so dearly. I am so blessed to have married him, someone who is so willing and open to talking through our thoughts and feelings. Never worried that the other will judge us. We are each others best therapist. While some couples would be pulled apart through an experience like this, Brad and I are drawn closer together. But we know we likely can’t handle this on our own. We learned of a support group at Spectrum for parents of newborns who have passed away. We’re going to check it out, hoping to find others who can lend their support. And hopefully with time, we, too, will be able to help others in our situation. The grievance nurse at my doctor’s office did caution us about the support group, saying that at times, couples find that they take on others’ burdens along with their own. I want to be cautious that we don’t spiral downward while participating with the group, saddened by not just our own experience, but that of others as well.

I’m not sure that we’ll ever “recover” fully from this. And we’ve been told that people around us may expect that we are healed sooner than we really are. It will certainly take time to heal. We are forever changed. I lost it today at church during one of the songs, “You Are Mine”. Just couldn’t hold back my tears and emotions. I think I will have a lot of these moments.

But we’re having good moments as well. Thank goodness for Gavin, he really keeps us going. He is just so darn funny, you can’t do anything but smile and giggle together. He is our blessing through all of this. And it is fun to see him at home now, uninhibited by the hospital environment. He is having a transition, though. Maybe a bit of anxiety, thinking that I am leaving again. He has been very emotional when I leave the room. And he frequently will check to make sure that I’m around. Definitely more clingy that prior to me leaving for five weeks. I’m hoping with the coming weeks this will fade away. While it is so sweet to be loved, I worry that this whole experience has affected him more than we know, more than he can express at such a young age.

So, we continue to pray for strength. And we certainly appreciate your continued thoughts, prayers and support. It has been flowing so steadily…thank you all! We wouldn’t be able to face the days without you keeping us going. I’m astonished each and every day at the outreach, the small, simple things that you do for us and for Grace’s memory. We are so blessed to have you all. Thank you!

Okay, this is the end. You made it. You get bonus points if you made it all the way to the end of this post! I'll be posting some photos of Grace in the coming days/weeks. A friend of a friend is working to professionally edit them for us. She is a beautiful little girl, and I can't wait to show her off!

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!