Just a little venting

After our last appointment in Iowa City, I have decided to start seeing my local OB as well. Once we find out that everything is ok with this little one, we will make the decision to be seen locally only and to deliver locally. I had nothing but great experiences in Iowa City when I was pregnant with Claire. This pregnancy has been very different. It all started when we had to go over our entire history (family and previous pregnancy) during our first appointment. I just had Claire in June. Shouldn't they know my history?! We are treated as just another pregnant couple there, where as locally, my OB knows me personally and knows everything about my previous pregnancy even though I didn't even deliver with her. We drive 2 hours round trip to get to Iowa City and we were in and out of there in 45 minutes last appointment. The high risk OB saw us for literally 5 minutes.

I'm also very frustrated with the timing of our first fetal echo. It seems as though every other heart mom has an echo at around 16 weeks with subsequent pregnancies. We were told we won't have one until 22 weeks. Really!? Our first echo for Claire was at 21 weeks. Shouldn't they be giving us one earlier this time to try to detect a problem earlier? I don't understand their reasoning. The more I think about it the more angry I get.

Sorry for the venting! I hope everyone had a great Christmas. Happy New Year!! This will be my second new years in a row of no drinking, so drink 2 or 3 or 10 for me. I'm going to be an extreme lightweight after this baby is born.

Thank God!

Our screening went great on Friday! I can't even begin to express my relief. The nuchal fold measurement was 1.8. We were shooting for anything under 2.5, so we're ecstatic with that number! Everything is looking great so far. Of course, it's too early to see if there are 4 heart chambers, but I'll take what I can get right now. This should get me through until 20 weeks when we will find out about the heart. Baby was measuring 4 days ahead, but not enough for them to move up my due date. He/She had the hiccups and was bouncing up and down and opening and closing his/her mouth. It was so amazing! I do have an anterior placenta again, so that explains my craziness with not finding the heartbeat on the doppler. I'll try again this week now that I'm a little further along. Here's a picture. It's from my phone, so it's small. I'll try to upload the actual picture sometime this week.

Impossibly Hard

Being pregnant after a loss sucks. It is so extremely hard. I know it's like this for anyone who has lost a baby no matter how far along they were.

My first trimester screening is tomorrow afternoon, and includes an ultrasound. I am having such anxiety about it, that my mood is horrible and I haven't been sleeping well. I am so worried that the baby will pop up on the screen and there will be no heartbeat. I even bought a doppler to ease my mind, and that has made me more crazy. I found the heartbeat pretty quickly the very first time I tried (Monday), but haven't been able to find it since. I am not a doctor, I am only 11W4D, and it's very possible that I have an anterior placenta again. I should be relieved that I found it at all, but of course I am not.

Why am I so worried about miscarrying? I carried a baby with a very severe heart defect to full-term. Really, I am just worried about losing another baby, because honestly, if I lost another baby I'm not sure how I could recover from that. I dont think I would. Losing Claire is hopefully the hardest thing I will have to go through in my life. Losing another baby is unimaginable to me.

Brad of course tries to reassure me that everything is ok. I'm still having symptoms, I clearly have a belly. He's so optimistic. He doesn't understand why I am so worried. I will be worried until this baby comes out screaming! I will update either tomorrow night or Saturday. "Today I am pregnant and I love my baby."

So Different

First off, I hope everyone had a great Thanksgiving!

It's amazing how different pregnancies can be. This time around is nothing like my first trimester pregnant with Claire. I've been so sick this time. Not physically sick (yet), but picture your worst hangover and then imagine feeling like that all day every day. It's great. I'm really hoping I only have another week or two of this. With Claire I had bad days, but nothing compared to this. Maybe I should have taken that as a sign, or maybe it doesn't mean anything. I know some people feel great their whole pregnancy. I hate them!

I've also been way more emotional this time around. I cry at the drop of a hat. I'll share an extremely embarrassing moment. Brad and I were at Hy-Vee when I was about 6 weeks along. About three fourths of the way through my grocery list, I thought I was going to get sick. I ran to the bathrooms, and of course, they were closed, they were remodeling. The only bathrooms where outside and portable. I would have gotten sick for sure going in one of those, so I just stepped outside and got some fresh air and calmed down. Brad kept shopping. I went back in the store figuring I would see him right away. Nope, I walked through the entire store at least 3 times and went back outside to check if maybe he was at the car already. He wasn't. I then started tearing up in the middle of Hy-Vee, when I finally found him. He was laughing at me while I was wiping my eyes as we checked out. It was great.

The cravings have been completely different as well. Last time Mexican food sounded horrendous and this time I could eat tacos every night! People say maybe that means we're having a boy this time. I hope it means that we have a healthy baby.

What We've Been Up To

It's been a long while since I've blogged. We've been quite busy and it's only going to get more crazy. I can't believe it's been over 5 months since Claire was born. Thanksgiving is next week and then in a few more weeks is Christmas! The holidays are going to be rough this year, but we will be with family and that will help.

Here's a little of what we've been up to -

The end of October we went to Ames for the Iowa State Homecoming game. My parents went with us. We got up early to tailgate before the game. It was luckily a perfect day weather-wise. ISU didn't win, but it was at least a close, exciting game to watch. I still can't believe they just beat the #2 (not anymore!) team in the country on Friday! So proud!

A couple weeks ago we saw Luke Bryan in concert. That man can shake his ass! It was even better of a concert than I thought it would be. I love live music so I hardly ever turn down the chance to go to a concert. Unfortunately, Brad and I have different taste in music and it seems that we only ever go to country concerts. Or maybe it's the fact that we live in Iowa and only country singers come here! I'll take what I can get I guess.

The last, but most exciting thing we've been up to is this...



I'm pregnant again!! Baby is 8 weeks in this ultrasound. I'm now 9 weeks along and due June 24th. Yep, another June baby. We couldn't be more excited and nervous at the same time. We feel so blessed and so lucky. The day we found out, I cried and prayed and talked to Claire. I know she had a hand in this. This baby is so lucky to always have his/her big sister watching over them and keeping them safe.

We are going to Iowa City, at least to begin with. It was hard going back there after how we left there last time. My blood pressure was extremely high at first, but did go down before we left. We have a plan, which is a little bit of a relief. Our next appointment is Dec. 9th. We will have the first trimester screen. We will then have more blood work at 16 weeks, and then the anatomy scan and our first fetal echo at 20 weeks. They also want to do another echo at 28 weeks just to double check everything. Fingers crossed baby will be 100% healthy and we will get to finish out this pregnancy with my local doctor.

Please don't say anything on Facebook if we are friends. My parents know, but we aren't telling Brad's family until this weekend, and we aren't telling our extended families until Christmas. We're just being very cautious. I wish we could wait to tell anyone until February when we know everything is OK, but I'm showing already, so that's pretty much impossible!

Quote

I hate email forwards, but my grandma sends some to us every once in a while, and I don't mind those, because well, they're from Grandma! She sent me one this weekend with a quote that I really liked. Just wanted to share it with you all.

"Life is not the way it's supposed to be, it's the way it is. The way you cope with it is what makes the difference."

Debbie Downer

So I feel like people probably think I'm such a Debbie Downer. This blog is pretty depressing to read. I started this blog to write about Claire and our journey with her and HLHS, but unfortunately there's not a lot of happy things to write about since Claire isn't here. I really really hope to have some exciting news and a new journey to write about in the next few months. Fingers crossed! On that note, I will probably announce my pregnancy on here almost as soon as we find out. I will be nervous but excited being pregnant again and will need to talk about it. However, in real life, we've discussed multiple times, and might not be telling anyone (no family, friends, etc.) about our next pregnancy until 16 weeks after we've had a fetal echocardiogram and have been told we have a healthy baby. It's too hard to "untell" people if we get devastating news again. Ash, if you're reading this, I'm OK with you knowing before others. :)

Despite what some people think (mother-in-law), we really are doing well and are not depressed. As Brad has said before "What happened is tragic, but we are not going to let it define our family. We will always love Claire and she will always be a part of our family."

I would like to write about some non-sad things today. We have finally joined the age of technology and bought iphones. I have had a razor phone, yes, a razor phone, for the last few years. I can't tell you how exciting it was to finally buy an iphone. Feel free to make fun of me all you want for that one!

One other happy thing is that we are officially and actively trying to conceive again! We are hoping for another summer baby. I know Claire is watching over us and I feel like I have a good relationship with God. I am confident that this next time around we will have a completely healthy baby that will get to come home with us. We will get to watch them grow and hit all of the milestones. My hopes are to continue this blog writing about our trying to conceive and pregnancy journeys as well as Claire.

Thanks for continuing to follow our blog!

9/11

Please remember. I know I will never forget. I can tell you exactly what I was doing when I heard the news. I feel like I'm a little more emotional than usual this year on 9/11. Maybe it's because I've recently lost someone I've loved so much, so I can relate (just a little bit) to what people went through losing their loved ones that day. I cannot even imagine what it was like there on 9/11 and the days after. I cannot even imagine what it would be like knowing that my husband was in one of those buildings or on one of those planes. I cry for the widows and the "children of 9/11." So today, please remember.

3 Months

I can't believe it's been 3 months already. I made it through yesterday surprisingly well. I truly think I get a little better every day. Claire's headstone was put in this week. What perfect timing! We went to see Claire tonight and it looks great. We feel like she sends us little signs quite often. Tonight, while we were visiting her, it started raining. We think she was trying to show us a rainbow again, but we never did see it.

Speaking of rainbows, 3 months was when we were told we could start trying again. Well, we've wasted no time. We decided that we're in the "we'll see what happens" camp. It's pretty exciting, but nerve-wracking. I'm trying not to get my hopes up too high though. We know Claire is watching over us.

I'll leave you with a couple of pictures. And oh yeah...GO CYCLONES!!

Florida

Brad and I just got back from a much-needed vacation to Clearwater Beach, Florida. It was a quick 4-day trip, but we had a good time. Of course we sat down on the plane and a girl with a baby, probably about the age that Claire should be, sits down across the aisle from us. I handled it well, even after an older couple said something to us along the lines of, "that will be you guys someday." Little do they know that that should be us right now, but of course we just smiled and said, "yep." Claire would have loved the ocean, but we know she was there with us. We brought her back a seashell and put it by her headstone.

I must say I've handled all of this pretty well. I was quite worried about depression even before Claire was born. I could have easily gone to that dark place, but I wouldn't and won't let myself. We are meant to have a family and in order to do that I need to stay strong and keep myself physically and mentally healthy. That's what keeps me going.

I've had people tell me that I'm so strong. I don't really know what to say to that. I still cry. I still question why this happened to her and why she's not here with us. I still have flashbacks of the nurse carrying her away for good underneath a blanket, wondering to myself why she had to cover her up, and then realizing that it's so no one else has to see our dead baby. That is the most traumatic thing I will ever go through in my life. That image will never be erased from my memory. I continue to tell myself everyday that God has a plan for us. I stay "strong" so I can carry out that plan.

CMN

We had memorials for Claire sent to the Children's Miracle Network. We raised over $2,000 by the way! Thank you to everyone! Anytime we get the chance to donate to them, we will. Donations to the CMN in Iowa City helped provide the hospital with new equipment for the heart babies, so it's important to us to help them out in any way we can. Dairy Queen is having a special today where $1 from every Blizzard purchase goes to your local CMN. I know not everyone likes Dairy Queen, but come on, it's for a good cause. You can go to the website and look up which of your local Dairy Queens is participating.

http://miracletreatday.com/

A Rainbow

This week is the big fair in our area. You can pay $40 ahead of time and get a ticket that will get you into the fair and a concert every night. The concerts this year are really good - Blake Shelton, Miranda Lambert, etc. so we will probably be going almost every night. Last night was Joe Nichols. It was about 100 degrees and sunny all day, not a drop of rain. Right before we were going into the concert, there was a half rainbow in the sky that lasted about 5 minutes. I am convinced that it was a sign from Claire telling us it is ok to have another baby so soon, to start trying for our rainbow baby.

Here is the definition of a rainbow baby:
Rainbow Babies" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope.

That pretty much says it all. Although I know we will worry, we can't wait for our rainbow baby.

Busy Day

We've been waiting for a few things regarding Claire, and guess what, they all came within two days of each other. The first thing we got was the proof for Claire's headstone and it was perfect! We decided to have "Forever In Our Hearts" written within two hearts as well as her name and birthday. I will post a picture when everything is all said and done with it. We also received a list of the people who donated to the Iowa City Children's Miracle Network. I was touched to find that people from my previous employer donated. I stay in touch with a few people there, but I didn't expect that at all. Last, but not least, we finally received the pictures from the photographer who came in to take pictures of Claire while we were in the hospital. Man, she was beautiful. It's so nice to have those pictures. Pictures are the only thing that we will have to remember all of her precious features.

I was so happy to receive all of these, but it was a lot all at once. It's like you're life is semi-normal again and then all of a sudden you relive everything all over again. We will push through, because that's just what you have to do.

The Best Is Yet To Come

So today was another sad day, my birthday. I would have loved to spend the day playing with my baby girl, but it wasn't meant to be that way. Instead we spent the afternoon at Brad's company picnic, which was a good time, then we went out for dinner.

My grandparents sent me a card that couldn't have been more perfect. I'll admit it made me cry. My grandma likes to underline lines of the card for emphasis. You know how grandmas are. :) But one of the lines she underlined made me smile. "Some of your best joys are yet to come." This is something I need to keep telling myself everyday. We will have more babies and they will be healthy and we will get to share all the milestones with them. Claire is our best joy, but there will be more to come! Thank you grandma and grandpa for the perfect card.

1 Month

Happy 1 month birthday Claire!

I've been wanting to post a picture of Claire for a while now, but was afraid some people might get a little creeped out. Well, I decided I don't care. We want everyone to see how beautiful she was. This picture is our favorite. It was taken shortly after she was born.



The hospital had a photographer come in and take a bunch of professional pictures for us as well. We should be getting those in the next day or two. I will probably post some of those when we get them.

Back to Work

Today I went back to work (4 weeks postpartum). Adam Sandler singing "back to school, back to school" is stuck in my head now. Anyway, it wasn't as bad as I had imagined. I was busy, but not overwhelmed and I didn't doze off at my desk once! I have a feeling I'll just get right back into the swing of things as if I wasn't gone for a month. That seems to be how things are after Claire. This past month has been a blur and now everything is coming back into focus, back to how it was before Claire was born. I will still think about her all the time, but I thought about her all the time before she was born too.

Brad and I were talking about how fast the last 4 weeks have gone. He made the comment about how if she was here with us, the 4 weeks probably would have dragged on. We would be zombies right now from lack of sleep with all the late night feedings and changings. Although I enjoy my sleep very much, I would give anything to have her here and healthy.

After losing Claire, we have unfortunately found out that quite a few people we know have lost a baby. My great-grandmother had a stillborn daughter who was born on my birthday. How ironic! My aunt's first daughter was stillborn. My aunt has been a great support for me. She lives in Arizona and honestly we weren't super close. (That happens when you see someone once a year if that.) She flew out for Claire's service and as soon as I saw her I broke down. I know it was so hard for her to relive the loss of her daughter, yet she wanted to be there for us. It's amazing how experiencing a loss like this brings you closer to people.

I also wanted to mention this blog - Pregnancy and Infant Loss Blog. It's a great way to find blogs of other moms with angel babies.

Follow-Up Appointment

I've planned on returning to work next week assuming all was well with my recovery. I figured I'd ease back into it with a short week. Since I have never been through this before, I wanted to make sure I had a check-up before going back to work just to make sure everything was healing correctly. Fortunately, everything looks great and is healing perfectly. Unfortunately, I have hemorrhoids. That would explain the uncomfortable feeling! I thought I was still sore from the tearing and stitches. I now have a prescription (for what, I'm not even going to say) so hopefully that will help. So...I guess I'm going back to work next week. I'm not 100% sure how I feel about that yet.

On another note, Claire would have been 3 weeks today. We went to the cemetery yesterday to decide on the color and design of Claire's headstone. Not something you ever imagine yourself doing. We decided on everything except for the saying that we want to include. I've done some googling but in the end we decided it needs to be something more personal. I'm sure I'll blog about it when we finally decide.

We love you baby girl!

Visit

Claire, we went to visit you today, but you probably know that already. Your daddy is so funny. He hates weeds. He couldn't stand the fact that there were weeds growing around you, so he had to pick them all. Hope you're having fun up in heaven. We love you.

Dear Claire

Dear Claire,

I think about you every day. We want you to know how much we love you. I find myself getting sad about all of the things that we didn't do after finding out about your heart.

I'm sorry that we never finished decorating your room. Your crib and dresser are set up and your room is painted, but we couldn't bring ourselves to hang the pictures that we bought or put up the letters spelling out your name.

I'm sorry that we never had a shower for you and that I returned the clothes I had bought before I knew you were sick. I just couldn't keep them knowing you would never be able to wear them.

I'm sorry that I kind of shut down and stopped being excited about being pregnant after we found out how serious your heart condition was. I guess I thought if I didn't let myself get too attached it wouldn't hurt as bad. I thought wrong.

I'm sorry that towards the end of the pregnancy I was secretly hoping that you would come a little early, so that we could get all of the hard times over with and start the healing process.

I'm sorry that I haven't dreamed about you yet. I yearn for the day that I see you in a dream so that I can see much fun you are having with all of the other babies in heaven.

Despite all of these things we love you more than words can express. We've loved you since the day we saw two pink lines. Another baby will never replace you. You will always be our first born and part of us will always be with you.

1 Week

I can't believe it's been over a week already. I don't know where the time went. I feel like it's been longer since we've said good-bye. Time marches on I guess. A day hasn't gone by that I haven't cried, and I'm sure I have a while before that time comes. I really want to get out this house and go visit Claire, but I know I need to take some time to recover myself. Yesterday was the first day where I was actually able to relax and let my body heal. I'll take 40 weeks of pregnancy over this postpartum crap any day!

We miss you and love you Claire Bear!

Claire's Memorial Service

We had Claire's service on Monday, June 13th. The funeral home has been great throughout the whole process. They unexpectedly took care of everything for us. The service was beautiful and thanks to mother nature, we were able to do the committal outside. It was a very hard day, but thankfully we were surrounded by our family and friends.

We incorporated a special reading about HLHS into the service that I want to share. I found this from reading other heart moms' blogs.

It's a beautiful day up in heaven.

Jesus is rounding up his tiniest angels, to go live on earth, and be born.

One of the sweetest angels says to Jesus 'I don't want to leave, I like it here, and I will miss you'.

He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, 'How about if you leave half of your heart here with me and take the other half with you, will that be okay?'

The angel smiles and says, 'I guess that will work'. But the little angel is still a little scared. She asks, 'Will I be okay with only half of my heart?'

Jesus replies, 'Of course you will, I have other angels there that will help out, and you will be fine.' Then Jesus gives the angel more details about his plan. He says 'When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart. Enjoy your time with your family, and when it is time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves.'

Claire's (long) Birth Story

I have a few posts that I'll probably post today, but I'll keep them in order, so I'll start with Claire's birth story. Tuesday morning around 3AM I woke up to go to the bathroom and was cramping a little. I shrugged it off to gas, but as I was walking to the bathroom I felt a trickle and felt like I had wet my pants. Again, I shrugged that off, because in class they tell you that you'll know when your water breaks, it will be a gush of fluid. I laid back down and the cramping continued. I was able to fall back asleep, but got up again around 6AM to continued cramping. I showered thinking I would go to work and see how things went. After losing some more fluid and my mucus plug I decided to call the doctor's office just in case. They wanted me to come in right away, since I was delivering in Iowa City which is a good hour away.

I finished getting ready and headed to the doctor's office. The doctor checked me and confirmed that my water had broken and I was 3 cm dilated. I was shocked. She said I needed to call Brad because we needed to get to Iowa City ASAP. They hooked me up for a quick non-stress test to see how often I was contracting, which wasn't very often, so I was able to ride to the hospital with Brad as opposed to going in an ambulance.

We got to the hospital around 11 and they started me on pitocin right away. I also had to have a penicillin IV because I had tested positive for Group B Strep. We had doctors/cardiologists coming in and asking questions because they needed to know what the plan was. We confirmed we were going the "comfort care" route and wanted to be able to hold her and spend as much time with her as possible.

I labored pretty easily from about 11 to 4 or so. I thought I was doing well breathing through the contractions and asked to be checked for progress again. The doctor said I was only about 4 cm. That was very discouraging. I was given some nubain to take a little of the edge off. It helped between contractions but did nothing to lessen the pain. It also made me pretty groggy. I believe around 6 or so I caved and got the epidural. I was all about going natural, but the pain was just too much and I knew I still had a ways to go. That helped tremendously. I still felt the contractions but was able to easily breathe through them and relax a little. Both of our parents came into the room so we sat and chatted with them for a while.

Finally around 10pm, I was checked and was 10 cm and ready to start pushing. Little did I know that the pushing would continue for 4 hours! Thank God for the epidural! We pushed with just the nurse (Emily - who was amazing) for about an hour and then decided to take a break and let Claire try to come down a little more on her own. The doctor came in and checked me again and felt that Claire was face up which was why the pushing wasn't progressing as quickly as we thought it would. I continued pushing and trying to get her to come out on my own. Finally around 1 or 1:30 the doctors came in again and asked if I wanted a little help since it had been almost 24 hours since my water broke. I of course said yes, so with the help of forceps, Claire was delivered face up at 2:06AM.

We knew immediately that she hadn't made it. Her face was very blue and she wasn't crying. They gave her to me right way and let Brad cut the cord. She was beautiful. She had a ton of black hair, her daddy's bushy eyebrows and long fingers and toes and her mommy's nose and lips.

Our parents came in and we all took turns holding her and taking pictures. The nurses gave her a bath and dressed her in a beautiful knit dress. We then had a chaplain come in and give Claire a blessing. It was perfect. We held her for a little longer and then decided to get some sleep. Claire got to stay in the room with us all night and all day the next day. We couldn't have asked for more.

We decided to go home Wednesday evening. A big storm was coming and we knew we would be able to rest easier at home. Saying bye to Claire and watching the nurse carry her out of our room was the hardest thing I've ever had to do in my life, and probably the hardest thing I ever will have to do. I can't even begin to describe the pain we felt knowing that we will never get to see or touch or hold her again. It's still painful, but I get through it knowing that this was God's plan and he knew all along that she would never have to suffer or feel any pain.

I have to finish this insanely long post by saying that the nurses and doctors at the hospital were absolutely wonderful. They listened to all of our requests and gave us hugs and told us how beautiful Claire was. They gave us so many things to remember Claire, I can't even begin to list them all. It was more than I ever could have imagined.

Claire's Arrival

Well, I think I jinxed myself by posting about being full term. My water broke Tuesday morning around 3AM. After 23 hours of labor and almost 4 hours of pushing with a few breaks in between, Claire was born sleeping on 6/08 at 2:06AM. Her heart was not strong enough to make it through the long labor. She weighed 5 lbs. 8 oz. and was 19 inches long. She was beautiful. I will post more when I am ready, but I just wanted to update everyone. Thank you for all the thoughts and prayers along the way.

Full Term

I am officially full term today! Claire Bear feel free to come at any time now. We can't wait to meet you. Even though our time together will be short, we are going to make the most of every second! Plus, this 90-100 degree heat is unbearable when pregnant.

I can't really explain why, but I bought two maternity tops today. I don't have much that fits me right now, and I'm getting so sick of wearing the same thing every week or every other week. Maybe it's just a little retail therapy, who knows. My justification is that I will be able to wear them for future pregnancies, which will hopefully be sooner rather than later.

Random Ramblings

I'll apologize in advance. This is going to be a really random post. I've been pretty scatter-brained the last week or so. I think it's because I'm getting closer to my due date and things are starting to get really real.

Let's start with pregnancy progress. I had an appointment in Iowa City yesterday with the high risk OB. I went in expecting them to only measure me and listen to the baby's heartbeat after driving 2 hours round trip. Fortunately, I also had the Group B Strep test and they did an internal. Unfortunately, I am not dilated at all. Guess I need to keep walking.

I would also like to add a note relating to my thankful post a week or so back. I forgot to mention how thankful I am for my good friend, Andrea. She is a nurse and used to work in the PICU with very sick kids. She's seen her fair share of kids with HLHS. She has been a great source of information and experience. It's so nice to be able to talk to someone who truly understands the disease and will be completely open and honest about every aspect of it. We feel that our families don't truly get the severity of Claire's heart defect, and even if they do, they are looking through rose-colored glasses.

On that note, Brad and I are about 90% sure that we will not be pursuing the surgeries for our baby. Due to the other issues on top of the HLHS, surgery is not the best option for our situation. Even with the surgeries, her heart will never be fixed. They can only alter the way that it works. If she even qualified for and pulled through the first surgery, she would have a lifetime full of other surgeries and medical procedures. When I say lifetime, I mean the chances of her living to the age of 5 are pretty small, and that's if she would even qualify for the second and third surgeries. We've been praying for God to point us in the right direction and let us know what is best for Claire. Giving her a life free of pain and tubes and wires and medication, and full of love is where we have been led. God has a plan for Claire, and we trust in Him. Yes, she will still have an echocardiogram shortly after birth, and yes, we can still change our mind, but it is pretty important to us to have a plan set when we go in for her birth, so there are no split-second decisions to be made.

Knowing that Claire will probably only be with us for a short time, we have an appointment with the cemetery next week. It will help getting more information and maybe taking care of some things in advance instead of scrambling to take care of everything after she passes. The cemetery has an area called "Babyland." For some reason babyland seems so morbid to me, but that is where she will be buried.

I think there were even more random thoughts that I wanted to share, but I can't think of them right now. Hope you all have a great weekend.

QC Heart Walk

We did the Quad City heart walk this morning. Considering they were predicting thunderstorms all morning, the turn out was above and beyond anything we invisioned, and IT NEVER RAINED!! I am absolutely amazed at the thoughtfulness and giving of other people. We were able to raise over $1500, definitely more than we ever expected. That's all thanks to our wonderful family and friends. Both of our sets of parents walked with us along with Brad's sister and her husband, and his mother. Also, about 12 people from Brad's company signed up at the last minute to walk with us. We were pretty touched by that. He works with a great group of people. We plan to do the walk every year in honor of Claire whether she is with us or not. And by the way, I made it the full 3 miles!

Hope everyone has a great weekend!

Thankful

As I was driving home from work today through what little "downtown" our area has, seeing the homeless and underprivileged, I suddenly realized how many things I am thankful for. I am thankful for my husband and the fact that we were brought together in Mexico of all places. I am thankful for our families and all of the support they have given us through the years. I am thankful for our home and the fact that we both have great jobs. I am thankful for our dog. I am thankful for the fact that it only took us a couple months of trying to get pregnant. I personally know many people who have been trying for a year or more with no luck. We know that if Claire passes, we will have a second chance to start the family that we have been dreaming about. It's terrible and extremely upsetting what is happening with our baby, but there is always someone going through worse. I know this has happened to us for a reason. This whole experience has and will continue to change our lives. I truly think we will be better people when this is all said and done.

"Welcome to the Roller Coaster Ride"

We had a follow-up appointment in Iowa City on Wednesday. We're always a little bit somber on days when we have to go to Iowa City. Each time we've gone, we've gotten more bad news. This appointment went shockingly well. We had an ultrasound, a fetal echo and a meeting with the high risk OB. The ultrasound was first and went well. She's getting so crammed in there it was hard to distinguish her different body parts. They told us everything looked good and we didn't need to have any more!

Next was the echo. This is always the most dreaded, yet informational part. After the news last time, we were prepared to discuss how long she would live after birth if we did nothing, organ donation, etc. To our surprise and the surprise of the Pediatric Cardiologist, Claire's atrial septal defect is looking better. The blood appeared to be flowing freely between the two atria as opposed to last time, when the blood was slowly sputtering through. He said if this remains the case when they do an echo after she is born, she will not be considered high risk, and will be able to have the first of the three surgeries when she is around 5 days old. This definitely changed our way of thinking as far as planning after her birth. We are now waiting until she's born to make any final decisions. We are trying not to get our hopes up too high. They are still giving her about a 50/50 chance of surviving the first surgery. Normal HLHS babies with no other complications have about an 85-90% chance of survival. We feel as though this is a sign that we owe her a chance at fighting this. We will not have any more echos until she is born, so we're now not-so-patiently playing the waiting game.

The OB appointment was short and sweet. I was measuring about 31 weeks instead of 33 weeks, but they said as long as I was within 3 weeks, they aren't concerned. I was prepared to talk induction, but after the surprise from the echo, the plan is now to let me go into labor naturally. The bigger the baby the better they handle the surgeries. They said they won't let me go past 41 weeks. If she's as stubborn as we think she will be, it's possible that we will have a July baby instead of a June baby. I better keep up the walking. I really don't want to go another 8 weeks before meeting her!

This truly is a roller coaster ride of emotion. We are keeping our fingers crossed that we get the same good news after she is born. Not too much longer!

32 weeks

We've been taking pictures each week of my growing belly. It's neat to see the changes. I don't think I look much different from last week, but I've had a couple people tell me that I look like I've dropped a little. I'm not seeing it. The second picture is Brad and I on Sunday at our nephew's baptism.

Next Time Around

When you're told by doctors to "plan for the worst," you can't help but think about when you will try again. I know some people may decide to take plenty of time to grieve and heal emotionally and physically, but we know that if we do lose Claire, we will start trying again as soon as we get the OK from the doctors. I know that there was nothing that I did that caused Claire's heart problems, and that her heart has been underdeveloped since some time between weeks 6-10, but I've already decided that there are things I will do differently in the first tri-mester next time around. I will absolutely not get a flu shot until I am at least 13 weeks, I will stay away from all caffeine, and I will try to avoid the fumes from all cleaning products. I know I can't live in a bubble, but I will do everything in my power to have our future children be as healthy as possible.

Let me just add that I LOVE my midwife! I was dead set on having a natural birth before all of this happened , so I've been seeing the midwives at the doctor office from the beginning. There are a few of them, but I've been seeing the same one since 20 weeks. She was the one who had to give us the news that things didn't look right. She's also become like a counselor to me. I don't have to continue seeing her, but I choose to. She is someone who I can simply sit there and talk to and cry with. She told me this week that when we get pregnant again, I will have to start out having all of my appointments in Iowa City. They will want to monitor the baby much more closely from the beginning in order to diagnose any heart/genetic problems as early as possible. She said she will gladly see me as well, as often as I want, even if it's just to talk or have lunch. She is just amazing.

Good and Bad Days

As expected, I have good and bad days with dealing with all of this. Today was a good day. I stayed busy at work and hardly thought about what the future holds for us and Claire. Monday, on the other hand, was a very bad day.

Let me start off by saying that the abundance of cards, emails, phone calls, etc. that we've received mean the world to us. I'm honestly amazed at the kindness of some people. I'm not going to lie, I cry every time I open another card and read the thoughtful things that people say. Monday was just a little overwhelming. When I got home from work we had a package on the front porch from my aunt. I opened it up and it was full of onesies and newborn outfits. I know she means well, but opening that up just tore me apart. It made me so sad that these cute little outfits may never be worn by our baby girl, that they may sit in her room in the box for God knows how long. To me they are one of the constant reminders that our baby may be with us for only a very short time.

My Grandpa also called me on Monday just to let us know that they think about us everyday and are praying for us. I still get emotional having to talk to others about it, so you can only imagine how that phone conversation went.

As far as updates, I really have none. We had another ultrasound last week and didn't see anything new, which I guess is a good thing. We don't have another ultrasound and fetal echo until May 11th. At that time we should have a much better plan for when the delivery will take place and somewhat of an idea what to expect after she is born.

What To Say

We live on a small, quiet cul-de-sac. There are about 7 houses on our street. One of the ladies puts together a list of everyone's names, addresses and phone numbers and hands them out every spring. Yesterday we were outside with the dog and she came over to get our information since we're the new people on the street. She noticed I was pregnant and asked all the usual questions - when I'm due, do we know what we're having, do we have a name picked out, etc. She then asked where I was delivering. I told her we were delivering in Iowa City because they found some problems with her heart. She said something along the lines of, "You know that happens a lot and most of the time it's nothing. It's when they still have the problem at 5 years old that it's a problem." We just kind of shrugged it off and said we're hoping for the best. Little does she know that our little girl will have this problem her entire life. It will never get better.

Part of me just wishes that no one could tell I was pregnant and then I wouldn't have to answer any of these questions. It pains me every time we have to talk about it. I can't even begin to imagine what it will be like if we don't get to bring her home. What questions will people ask when it's July, August, etc. and you have no baby and clearly aren't pregnant anymore? How will I respond? There's so much uncertainty. June can't come fast enough. If she's suffering I want it to be over for her, but then again if she's strong and can push through, then we want to give her every chance to be a fighter. I guess we will have our answers in about 10 weeks.

Not So Good News

I'm not sure yet what all I want to say, but here goes. We were told some not so good news today at our appointment in Iowa City. Apparently Claire's heart has gotten worse since the last time we were there. She now has a restrictive atrial septal defect and a very small aortic valve. These two things on top of the HLHS put us at very high risk. Her chance of survival is much lower (from 80-90% down to possibly 20%). She may not even be able to have the first of the three surgeries. We were told to prepare for the worst. We are no longer planning on her having the first of three surgeries during her first week of life, but are now playing the waiting game until she is born to see how severe it really is and what our options will be.

It's so hard being unsure of what the future holds. We are so thankful for our wonderful support system and all of the thoughts and prayers that we've received. We are also thankful for the many doctors that we've seen. They have all been very kind and open and honest with us, which is what we need right now.

26 weeks and Claire's room pics

I don't have much to update. We go back to Iowa City a week from tomorrow, so hopefully we'll have some more info then. We picked up the crib and put it together this weekend with the help of Brad's parents. Here's a 26-week picture and some pictures of Claire's room.

Apparently, I look a little puffy in the mornings.



Here's the crib and dresser. The walls are actually a really pale green.


Here are a few pictures for the walls. They match the sheets we have picked out perfectly.

Viability Day

Yesterday was viability day - 24 weeks. For a normal pregnancy, 24 weeks is a huge milestone. Babies born at 24 weeks have a 50-50 chance of survival, and the percentages only go up from there. Although I am so thankful to make it this far, I know that if our baby doesn't make it to full term, her chances of survival are quite low. If she isn't developed enough, she won't even be able to have her first surgery. Keep growing big and strong Baby C! We love you!

My Strength

My husband is my strength. The day we got confirmation that our daughter had HLHS, he said to me, "This happened to us because we are strong enough to make it through." He is so right. I've had days where I can't believe this is happening, and want to just start over, but he's been so positive and optimistic through everything so far, that's it's really helped me to be a stronger person. I know when the time comes for our daughter to be born and to have her first surgery, he will be there as optimistic and strong as ever. I couldn't do it without him. He's my rock.

I know this has happened to us for a reason. God chose us, because we have the strength, support and resources to get through this no matter what happens. We are truly blessed. The thoughts and prayers and kind words that we've received so far are more than I ever dreamed of. There are so many amazing people out there.

A First

Right at 22 weeks we saw and felt the baby kicking from the outside. This was the first time and I'm so glad we were able to experience it together. Brad's face really lit up. It was a moment I'll never forget. It's so nice to have confirmation that our baby is actually growing and moving around in there.

Iowa City Appointment

Our first appointment for the day was to have a Level II Ultrasound. We first met with a nurse to go over family history and to give them a little more information about our pregnancy so far. We then went in for the ultrasound. Again, everything looked great and was measuring right on, except for her heart. The ultrasound tech could clearly see the right ventricle, the right atrium and a small left atrium. She was having a very hard time pin pointing the left ventricle. She had the OB come in to take a look as well and he was in agreement. The left side of our baby's heart was very underdeveloped. She most likely has Hypoplastic Left Heart Syndrome. We went into this appointment knowing there was likely something wrong and that we would do whatever we needed to do to help our baby survive. Getting the confirmation still hits you like a ton of bricks. They gave us as much information as they could and let us know that the pediatric cardiologist conducting the fetal echo would be able to give us much more information.

We met with the pediatric cardiologist about an hour later. He confirmed what the OB had said and gave us a ton of details about our baby's heart problem. In a nut shell, this is a very serious heart problem. Our baby will essentially be born with a half a heart. We will be considered high risk and will need to deliver in Iowa City. Our baby will be taken to the NICU immediately after birth. She will require surgery at 1 week old, 6 months old and 3 years old. After her first surgery she will remain at the hospital for at least 4-6 weeks, maybe longer. The first 6 months will be the hardest. There is a possibility that she will need to eat through a tube, and there's always the possibility that there will be complications and she won't make it. We're praying for the best and trying to stay positive for our little girl.

We have a follow-up appointment on March 31st for another Level II Ultrasound and a fetal echo. We're keeping our fingers crossed for some improvement, no matter how small!

"She didn't see what she wanted to see."

These are the words from our Midwife after our 20 week anatomy scan. February 9th was supposed to be one of the most exciting days of our life. We were going to find out if we were having a boy or a girl. We found out right away that our baby is breech. No big deal, a lot of babies turn during the second half of pregnancy. We were later told that everything looked great and our baby GIRL was measuring a day ahead. We got a few pictures and a short video and went back out to the waiting room to wait to see our Midwife. When we were finally able to see her, she dropped the bomb. There was potentially something seriously wrong with our baby's heart. "They weren't seeing what they wanted to see." We were then told that we would need to have another ultrasound followed by a fetal echo in Iowa City at the hospital. Not the type of appointment you dream of having.

We received a call from the hospital in IA City the next day, letting us know that our appointment would be the following Wednesday. We were stuck in limbo with no explanation or answers for a week.