Exciting News - Times Two

We had better get used to this picture! Greg and I are happy, if not shocked, to find out that we are expecting twins this June! Yes, I did say twins. As excited as we are now, I must say the initial reaction was a little different. Two babies? At one time? The two we have make life crazy enough!!! Well, the news has settled in a bit, and now we are just excited.

We had our initial early ultrasound last week and the babies look great. We are due June 12, which makes us about 13 weeks right now. Our big anatomy scan is five weeks away, which will give us our first look at their hearts. We should be able to see all four chambers at that ultrasound. The babies will also require echocardiograms to take a more detailed look at their hearts. HLHS has anywhere from a 2-10% recurrence risk, and has a high association with less complex heart defects as well, hence the need for the further testing. I am trying to stay very positive, but I sure will feel better after the ultrasounds. Gone are the days of only being concerned if it is a boy or a girl. Now I just want to see four chambers.

There are so many different things to think about with two babies, and this is a nice distraction. Two car seats, two cribs, and two babies to feed at night. We have already started to think about a minivan!!! I think I'll let Greg drive that car.

We had a really nice Thanksgiving at my Uncle Ted and Aunt Sharon's house. Food was outstanding as usual. I finished a delivery just in time to make dinner, so the timing was perfect. Being on call for Thanksgiving, though, means that I do not have to work at all over the Christmas holiday, so it is well worth it. We went to Eckert's and cut down our Christmas tree with the Boekers and my parents over the weekend as well. I think this is the first year that we have gone when it hasn't been below freezing!

The other exciting news at our house is that our never ending construction project has finally come to an end. We finally started unpacking boxes from the basement that hadn't been touched since we moved in over a year and a half ago. It is absolutely wonderful to have a working kitchen, to not live out of boxes, and just to feel organized again! Sophie and Meg are enjoying it as well!!! (Meg loves her chocolate)

Happy Halloween

If you ask Sophie what she wants to be when she grows up, she says "a bunny!". So it is not surprising that a bunny is what she wanted to be for Halloween. And for the most part she left the ears on while trick or treating. I had every intention of making Meg into a carrot, but believe it or not, I struggled making the costume. Instead, she was (appropriately) a monkey. She loved the costume, twirling around the tail. She was the only monkey with whiskers, making her look a little like a mouse, but if Sophie has whiskers, than Meg has to have whiskers! We had a nice time though, with originally both of us taking the girls out with our neighbors across the street who have kids the same age (after I finished a delivery just in the nick of time!), and then Greg and my dad took them for one more round. They've eaten nothing but candy all day!!!

The house is almost completely done - finally! Just two lights left to hang over the kitchen island, and a little repair work on our shower, and it will be official. Hard to believe it is finally over, but is was so worth it. Everything turned out perfect, and I absolutely love the kitchen. So functional, and places for the kids to do things while I am cooking. I'll post pictures in an upcoming blog when the kitchen lights are finished.

Greg went home last weekend for his 20 year high school reunion, leaving me and the girls behind. Greg went to an all guy high school, so believe it or not, the planned functions were not really female friendly (i.e. an all day excursion to a horse track) so we stayed in St. Louis. Plus, it was Audrey's 3rd birthday party, and the girls really wanted to go. The party started at the Magic House, with all of the kids from Audrey's preschool, and ended back at my sister's. It was a lot of fun, if not a little crazy, with 20 3 year olds. Hopefully we will get home to Kentucky for the holidays without a trip to the horse track!

Back Home

We somehow survived the two weeks in the hotel. It actually went a lot better than either Greg or I anticipated. The girls loved both the swimming pool and the "hot pool" (as Meg called it), and they quickly learned to sleep together, kind of. They were happy to get home to their own rooms however. We moved back in a day earlier than we thought too. Last Friday after work we packed everything up and moved back in. Sheets on the girls' beds and they were good to go!

The two weeks were broken up with a trip to Santa Claus, Indiana, for a camping trip with all of Greg's family. We stayed in a rentable RV that was larger than the hotel room and had a refrigerator & a couch! The campground hosts Halloween weekends starting in September where they have all sorts of activities for the kids, and trick or treating throughout the entire campground Saturday evening. Sophie did a great job saying trick or treat and thank you, whereas Meg was very good at pushing the other kids out of the way to get her candy! I was embarassed to not have costumes for them yet, as you would not believe how into Halloween these campers were. All sorts of decorations, costumes, scary music, etc. . . Oh well, the girls still had a great time. We had a campfire both nights, attempted to roast marshmallows and make s'mores (I think they might still be a little young!) and all together had a great weekend.

We came back to a house that is almost complete. The floors look incredible. I am so happy that I convinced Greg to pull up the carpet. But best of all, I have a functional kitchen! Working sinks, working dishwasher, working oven and cooktop! It's hard to believe that it has been five months since we had a dishwasher! I've already made a few meals, and it feels so good to be getting organized again. They only have a few finishing touches, like the tile backsplash, mirrors, paint, and then they are completely done. Even my washer and dryer got moved up to the new laundry area on the second floor. We are so excited.

Sophie and Meg are both loving preschool. I have altered my work schedule so that I have been able to either take them or pick them up a few times. Meg could care less when you leave her there. When I came to get her on Friday, she was the only kid not crying. She was just trying to zipper up her coat to get ready to go! So cute!

It's Like a Vacation

That's what we are trying to tell ourselves anyway! This past weekend, Greg & I (with my parents help with the kids) packed up our entire house so that the floors can be refininshed. This was no small feat. Every piece of furniture, all the contents of the closets, etc . . . had to be moved into a small sunroom, our basement, and the third floor attic. Greg got quite the work out going up and down the stairs! After the house was completely empty (the workers moved the big furniture the next am) we packed up the cats and headed up to Grandma Esther's for a most excellent meal - my favoite, homemade noodles and Londoff Chicken!!! There we left the cats and then moved into our vacation resort, the Crowne Plaza (courtesy of Greg's generous relatives). The kids are loving the pool. Meg gets so excited saying "I swim I swim." They aren't enjoying the sleeping arrangements as much though. They have never had to sleep in the same room, and Sophie complains that Meg talks too much! Oh well, it's only ten days right?

The countertops and bathroom vanities were installed at the end of last week, two days before we moved out, but at least we got to see them. Supposedly, by the time we move back next week, the kitchen should be functional! Not much left to do, other than some painting, towel racks, etc. . . So exciting!

Last week we went to Children's for a memorial for Ben. It was actually for many children, all those that had passed away in the past few months. I saw names on the list of other kids who had been in the CICU when Ben was there, who have since died. It was a nice memorial, but as you can imagine, very sad. So many families there who had also lost their child. We went up to the CICU afterwards - I'm not quite sure why I wanted to do that. When we got inside the doors, we saw Dr. Gazit, who was happy to see us, and chatted with him for a few moments. I noticed that Ben's room was open, and commented on this to Dr. Gazit. He told us that actually the baby that was in the room had just gone to the operating room for a heart transplant. The irony of this was too much for me, and we left. I don't think I'll be back to the CICU anytime soon.

Almost There

There is an end in sight! The cabinets finally arrived last week, and they finished installing them late this week. Our refrigerator and microwave also moved into the new kitchen, rather than being in my family room. Still no countertops - I think they are going to be cut this week, but we can really see that this is coming to an end. We have one last hurdle to clear, which will come in mid September. We have to move out for ten days while the floors get refinished. We plan on staying in a hotel during the week, and on the weekend we are going camping with Greg's family in Indiana. The hardest part will be getting everything out of the house so that they can do the floors. We're going to try to move most of the furniture into the garage, basement, and sunroom. I also will have to pack enough things for ten days in a hotel, so I'm not exactly looking forward to that either. But then, the house will be essentially finished!

Yesterday, since the weather was so nice, we went to Hacienda and ate out on the patio. If you haven't been there recently, they added a really nice awning to protect even more against the elements. Meg very much takes after her mother and loves the cheese. The girls are getting ready to start preschool in one week. Sophie will go for three half days, and Meg for two. I really am looking forward to seeing how Meg likes it, as she seems to be very social and adventurous. We are sort of trying to work on potty training with her, as Sophie was already done by her age. She has actually used it quite a few times, but for the most part, seems to care less. Oh well, I'm not really that anxious to get her out of diapers anyway.

These next pictures are of our trip to Cincinnati. Meg loved the cage again. Maybe we need to get one at home. We had a nice party for Isaac's birthday at Tony and Suzie's house, where we stayed. Talk about a house full of kids - their four boys and our two girls! Saturday night we went to a 40th b-day party for Marcus, Greg's cousin's husband, who is from Germany. Hence the awesome Oktoberfest theme. Giant pretzels and everything! Today we are going to Drew's first birthday party at Kirkwood park. We're supposed to bring swimsuits for the kids, but I think it's going to be too cold! Can you imagine too cold in August in St. Louis? Crazy.

Welcome To Club Ward

What a hot weekend! We shouldn't complain, as it has been a very mild summer so far. But this past weekend it was in the 90's. Sophie wanted to go swimming, so Greg inflated our "pool" and the kids had a great time.

On Friday, the girls and I went to the zoo and rode the train. Meg loves the tunnels, and kept asking for more. It has to be the cutest word in her vocabulary to hear her say. Afterwards, they wanted ice cream cones, so we went to Ted Drew's. I wish I had remembered to use my iPhone (coolest thing that I have ever owned - thanks Fred!) to take a picture of them eating their cones. It was so hot, and the ice cream was melting so fast . . . so I pushed the ice cream into the cone. Initially Sophie didn't like it, but she quickly discovered that it kept it from melting. However, when I went to grab Meg's cone she starts to panic and says "No Mommy, don't!". You would have thought that I had just thrown out her beloved blanket! She still ate it.

Last night we went out to A'mis for my mom's birthday. We had pasta and pizza, and Laura brought a little cake. Service there is notoriously slow, and Meg can only handle so much sitting in one place before she goes a little stir crazy, but it was still a nice time.

Our house is really starting to come together. Still no kitchen. They teased us by telling us that the cabinets were going to be in this week, and then changed their minds and said next week. But we have walls that are painted, and three working toilets. We have lights in all of the rooms as well. Greg and I have painted two rooms ourselves, the dining room and the kids playroom, and the painter says we have a back up career. We also have a back porch now, and a mailbox! (We haven't had one for over six months - the mailman was getting a little impatient!) So, hopefully the cabinets will really be in by next week so that we can be one step closer to having a kitchen. Any suggestions on what our first meal should be? Greg votes for spaghetti and meatballs!!!

The first picture is the girls' bathroom. The other two are of the upstairs landing and the new hallway. Joe saved the closet doors from another room in the house. At first I was a little skeptical about using glass doors for a linen closet, but it's really nice to save the features of the old home. This last picture is one that my sister had of Ben on her IPhone that she sent to me. It's now my background. It's nice to have a picture of him when he still looks like himself, without the jaundice and such. Just an NG. What a cute baby!

We Have a Bathtub

Joe gave us the go ahead to use the new bathtub today! Goodbye duckie - I can't say that I'm going to miss you! The girls were as excited as I was, enjoying being able to play with bath toys again and stretch out. It's so much better than sharing a duck. Not to mention how much better it is than our old pink 1950's bathtub. We also finally got a working toilet in the half bath on the first floor. The rooms aren't done by any means - neither of them having working sinks or paint, but who cares!

Happy Birthday Rachael!

This past Sunday Greg's sister Jeannie and her family stayed over on their way to Tantara. They are brave folk. Have I mentioned that we only have one working bathroom, no bathtub, no kitchen, and piles of things everywhere? It also happened to be my niece Rachael's 11th birthday, so we went to Happy Joe's to celebrate. The Boeker's joined us as well. I made a cake on my coffee table as I still do not have a kitchen. It is getting really old. Have I mentioned that I still do not have a kitchen?

Speaking of the remodeling, Greg was so upset about the delay in our cabinets, that he cancelled the order with the original manufacturer and reordered with another. They assured us that the order would arrive in three weeks. Joe the foreman had better hope so, because my cheery dispostion is coming to an end. Poor Joe - he's such a nice guy, and just stuck in the middle. He and his crew are doing an awesome job, and the house really does look nice, I'm simply running out of patience! They have all the tile done in the bathroom and the new laundry room, and I think they have finished with all the trim. The painter was here today getting started, so hopefully we will have a working bathtub by next week.

Greg and I are also excited that he will be heading back to our alma mater of SLU starting September 1. Although he enjoyed his time immensely in his practice with Chen, having dueling beepers was not always that easy. And his temporary gig as a house doc is leaving me never seeing him! He works the weekends when I am off, and works the overnight shifts when I get home from work. He has been getting a lot of yard work and house work done, though, and has even made a few trips to the grocery!

These last two pictures are of the new swingset that we put in our back yard. The girls absolutely love it, and I must admit, I love swinging as well! Did I mention that I still do not have a kitchen?

I Love Chicago!

Greg and I took a much needed vacation this past weekend. We left Sophie & Meg with my parents, and headed up to Chicago with my sister and Tim. We got up there by early afternoon, checked into the hotel, and headed out to watch the Cards game at a bar recommended by my uncles. Saturday, after a quick trip to the American Girl store (Greg's favorite!), we went to the Cards-Cubs game. Unfortunately, they lost, but we had an awesome time. Afterwards, we met my friend Wendy and some of her Cubs faithful, ran into Heather and Ralph, and lost all track of time! Sunday was back to reality . . . but we were happy to see the girls.

Our house is really starting to come together. Still no kitchen, but at least we now have walls and floors. The cabinets are, of course, delayed, so we are at a little of a standstill. But it is definitely starting to look like a house again. I must say that I am getting a little tired of living as we have been, in disarray and disorganization, not to mention the dust! The girls have really done great with it, and still amaze me at how they are able to sleep through walls coming down, and floors being layed. I am, however, ready for it to be done. I have included a few before and after pics so that you can see the progress that is being made. The picture of the girls is the duck that is their bathtub, since we have only a shower at present, until they finish with the girls' bath!

I recently found a center that takes breast milk donations. I was given the info at Children's on our last day there, but it took me a little while to feel up to investigating. Essentially, they pay for everything, including the shipping, and they will take all of the milk. They will also put Ben's name on the leaf of a giving tree in his honor. I am just so grateful that I don't have to throw it all away - I must have at least 1000 ounces. It makes me feel so much better that someone will benefit from it. Plus, we need the room in our freezer!

Ben Smiled

Laura (my sister-in-law) gave us a CD the other day that I thought contained pictures of Ben. I viewed it today at work and found out it is not pictures but a video clip of Ben in the CICU. Karen and Laura are talking to Ben and you can see him actually smile! It's a great video and I can't thank Laura enough for sharing this with us. I hope you all enjoy it as much as I did!

Back To Work

Today was my first day back at work. To say that I wasn't all that excited about going back would be an understatement. But, it actually went very well. Most of that can be attributed to my awesome staff at work. They made sure my day was light, limited my OB patients, sent flowers . . . you name it, they did it. My patients had a lot to do with it as well. Some of my OB patients wanted to give me a little time to get readjusted to being back, so they are seeing my partners this week. Again, I am humbled by the outpouring of generosity and genuine concern of everyone! It made the transition very smooth. But, even seeing my pregnant patients wasn't as difficult as I imagined. It was a good day.

We had a great "last week" in preparation for me going back to work. We spent a lot of time with the kids, going to the zoo on Thursday when it was 100 degrees! We had dinner with Les and Jean and played trivia at Chevy's like old times. We even won! I took the girls to the Webster pool with my neighbor Jennifer and her kids, lathering Meg up with sunscreen, of course. We had dinner with Drew's parents on Saturday night, and all of the girls (Sophie, Meg, and Drew's sister Tori) played so well together while we visited. The rest of our free time was spent playing on the new swingset we got for Sophie and Meg. Now all we hear is "swing, swing"!

Happy Father's Day

Friday night we went to Incredible Pizza for a small b-day party for Meg. Everyone had a great time, especially Meg. I was successful at making her an Elmo cake that actually looked like Elmo! We ate pizza, opened gifts, and then headed over to the "rides". They have the perfect toddler area that has a small carousel and a little car that goes around in circles. I think Sophie, Meg and Audrey could have done this for hours, but fortunately for the adults, it was bed time.

Father's Day was a little more difficult than I had expected. It started when I had to sign Greg's card for the girls. The card said from your kids, and I couldn't help but think back to how I signed the cards on Mother's Day, with Benjamin's name. Greg had the same thoughts as I did, and I felt bad for him, it being his day. But, we still had a nice day with the girls. We went to my parents for dinner, and all the kids played on a slip and slide.

It is amazing how you think you are doing perfectly fine, and then out of nowhere a thought enters and you're sad again. I think I am expecting too much of myself - it's only been three weeks since the funeral. And I am worried that when I go back to work, the thoughts will increase. Here at home I can shelter myself from seeing babies and pregnant women. Unfortunately, my job isn't one where I can distract myself from the reality of losing my baby - every day will be a reminder. But I also do hope that by getting back into work, it will get easier, and I do miss it. My office has been awesome in supporting me, and I know they will do everything they can to make my return positive. We'll just have to see how it goes!

Happy Birthday To Meg

Today is Meg's 2nd birthday. Sophie woke up this morning, and the first thing that she said was"Happy Birthday Meg!". I'm not sure that Meg really got it, but she loved the attention. She also loves singing Happy Birthday, although probably only Greg and I can recognize it. Anyway, it was a pretty low key evening with Aunt Laura, Audrey and Drew coming over to eat pizza and cupcakes. She got a new bike helmet, so that Sophie can have hers back. She loved that it had Elmo on it!

Our house is a major construction zone, and my kitchen consists of a card table and some make shift cabinets. I did, though, as I mentioned above, manage to make cupcakes and pizza. I just couldn't bring myself to buy cupcakes for her b-day. Now I am supposed to make an Elmo cake for our party on Friday, but that may prove to be a much bigger challenge. And I don't want to traumatize the child with some spooky looking Elmo.

I am amazed by the insightfulness of my girls. Meg found Ben's blanket upstairs yesterday and was walking around holding it saying "my baby" and "ohh". She gets real sad when she looks at the collage of pictures with Ben and all of us. Sophie put a sticker on my mirror telling me that it was for Ben and it would make him want to come home. I try to not upset them more with my answers, and it is difficult for me sometimes to talk to them about it. But we are trying.

The doctor who delivered Benjamin, Dr. Shumway, called yesterday. He had been on vacation and had just found out. He was very upset. We have actually known him for many years; we worked with him as residents at SLU. We were so happy that he came for Ben's delivery, not knowing anyone down at Barnes. It was nice of him to call. I know from the doctor side of it, how upsetting it is to find out that a baby that you delivered has died - and that phone call is a difficult one to make. Again, I have to say, I am overwhelmed by the outpouring of support from everyone, and it has helped us immensely.

Picture Day

Some days are harder than others. These past two days have been. We took the girls to get their pictures taken, which I had been meaning to do before Benjamin was born. Of course, I didn't get that done. Then, after Ben was in the hospital, I thought that I would wait until he came home and have a nice photo session done at home with Brandi Brown, who did my girls last summer. Yesterday we took just two kids to get their pictures done. And, of course, there are babies and newborns everywhere, and this just made it even sadder to me. I had best get used to this, as I am surrounded by pregnancy and babies at work. I think it is definitely a good thing that I am taking a little more time off of work.

When we first learned about the HLHS back in December, I started to learn more through the internet, and stumbled upon other families' blogs concerning their children with HLHS. This became overwhelming to me, and I had to stop. The amount of sadness that I encountered was not helpful to me at the time, as I needed hope. I now find myself drawn back to these same blogs, now that I too share these same experiences. One little girl got a new heart last week after her heart began to fail after the Glenn surgery. Another little girl died after a failed Glenn. I realized that this could have been Ben. If he had undergone the Norwood, the outcome would have been the same, only prolonged. We could have lost a six month old, or one year old like these families. Is it better to have known them longer, to have been able to take them home? I don't know. I only know that I am sad enough only having known Benjamin for five weeks.

It is hard to imagine that as I sit here, there are other families going through the same things that we just did. These blogs reinforce this. For many families, open heart surgeries, months in the cardiac ICU, holding your dying child, are realities. As I have said before, it changes you, and your perspective on life. No one should have to make the decisions or do the things that these families have to do everyday. Thank God most of us never have to. But I can't stop thinking about it all, and missing my baby. I should probably stop looking at those blogs again.

Next week is Meg's birthday - she'll be two already! Hopefully, we can have a nice time out for pizza and games. Meg loves the games and kid rides at the pizza place, so much so that it is hard to keep track of her. But, she really enjoys it, as does Sophie and her cousin Audrey. And I guess since I am not working, I have no excuse not to make the cake!

Back to Real Life

It has already been a week since Benjamin's funeral. It doesn't really seem possible. We are attempting to get life back to some sense of normalcy. Last week we spent a lot of time with the girls. We went to the zoo on Thursday, and touched the stingrays. Well sort of. I stuck my hand in one time, as did Sophie. Believe it or not, neither of us really enjoyed it much. Meg had no interest in trying! Sophie got her face painted, which somehow she is able to sit still for. We went to dinner with my parents at Joanie's Pizza on Friday night. Saturday night we went to the Cardinals game, and we actually sat through six inning in our seats with the girls! This was a first. We had a really enjoyable evening.

Our babysitter Brittany was back on Monday, after having been on vacation last week. The girls were happy to see her, although Meg not as happy for me to go. When she first saw Brittany she said "No - Mommy" and then said "bye-bye" while waving to her. Meg has been a sweet heart this week, wanting constantly for me to hold her, or just hold her hand and walk with her. The other night when I was putting her to bed she looked at me and said "I love you"! This was a first for my crazy on the go Meg. It has definitely helped me though.

The picture is of the tree that was planted in Benjamin's honor in our back yard. It looks very nice with all of the surrounding landscaping. As I said before, I cannot believe it has been a week since the funeral. I feel that I am doing pretty well. I still have up all of the pictures that my sister put out at the visitation, and enjoy looking at Ben everyday. I am trying to remember him those first few weeks before he was so sick, without the breathing tube. I wish I had taken more pictures, but I really thought he was coming home, and wanted pictures without all the tubes and wires. And he got so sick so fast, without much warning on that Friday. I have started in on the daunting task of going through all of his things - his gifts and cards and clothes - to be able to put them away. I think I will probably leave out his blanket somewhere, maybe in the new room that we are adding that was supposed to be his room. I don't really want to just store it in a box; I think I'd like to leave it out. Greg is back to work for the first time today, and it is a little hard for him. I anticipate the same for me when I return in a few weeks. I had initially thought that I might go back early, but I quickly realized that I need some time before I return. So, I am going to work on some things at home, and enjoy my girls. This experience has taught me quite a few things, but most of all, it has helped me to appreciate my daughters and how lucky I am to have them.

Don't Cry Mom, Today Is A Happy Day

Out of the mouths of babes. This is what Sophie said to me as we were getting ready for the funeral on Tuesday. Thank God for my girls.

The visitation and the funeral went very well. So many people came to offer their support and prayers - it is quite humbling. The Mass was beautiful, as was Fr. Meier's homily. I had selected all the music the day before with the choir director, and the songs were perfect. You could not have asked for better weather either. After the funeral, we went to my sister's house for lunch, and visiting with family was a welcome distraction.

Greg's family remained in town until yesterday. Greg's dad and brother planted a new tree in our backyard in honor of Benjamin. It's a dogwood, and we found the perfect place for it. My family also came over, and helped with the girls and laundry.

Now is when it starts to get difficult. All of the planning and distractions of the past few days are gone. It is quiet now as my girls take their naps, and now we are left with our thoughts. The thoughts are constant and never ending. I dream about Ben and the hospital, I wake up thinking about him. When you least expect it is when you are overcome with sadness. But then Sophie reminds me that it is a happy day, and she tells me that she loves it when I smile.

Arrangements

I have been told that there has been a problem with the blog sending the last post. I have reposted the arrangements in case there were any problems.

Arrangements for Benjamin's funeral are as follows:

Visitation:
Monday, June 1, 2009
Bopp Chapel
10610 Manchester Road
Kirkwood, MO

5-8 p.m.Funeral Mass:
Tuesday, June 2, 2009
Mary Queen of Peace Church
Webster Groves, MO
10 a.m.

Arrangements

Arrangements have been made for Benjamin's funeral. The visitation will be held tomorrow, Monday, June 1, from 5-8 pm at Bopp Chapel. The address is 10610 Manchester Road Kirkwood, MO. The funeral Mass is at Mary Queen of Peace at 10 am on June 2.

The last few days have been a blur. After Greg and I arrived at the hospital on Friday, the CICU doctor was waiting for us. We had already seen all of Ben's labs. His creatinine had risen, as had his bilirubin. His urine output had fallen off overnight. His blood counts, his hemoglobin and platelets, had fallen again. He had a slight temperature, and his infection counts were high. We spoke to the doctor at length, and as I mentioned, we had decided to make him a DNR. We also agreed that if one more organ system became affected, there would be no way his poor little body could heal. And the reality was, the likelihood of his kidneys and liver getting better with the way his heart was failing was very small. But, I was still holding out hope that he would look better by the next morning.

As the day moved on, though, it became more and more obvious that he was getting worse. I called my family to come and see him, and I asked if we could hold him. Greg and I spent a lot of the afternoon just snuggling with him. He was so peaceful. They had increased his pain meds, and he was no longer struggling to keep up his sats. His blood pressure and pulse were getting lower, and his heart had started to skip some beats. Still, I had not given up hope. But then he began suffering from internal bleeding. We were devastated. We knew what this meant.

We stayed in the room with him all night. He slept comfortably. We did not. At 4 am the nurses woke us to let us know that his blood pressure was even lower. His am labs came back, and his hemoglobin and platelets had fallen even lower, making it obvious that his bleeding was getting worse. Dr. Gazit, the CICU physician from the week before, came in to speak with us. This man was so caring, and he had given me such hope the week before, telling me that he had not given up on Benjamin. He was the one who made me believe that there was a chance that his kidneys and liver could recover. But when he came in, it was obvious to him, and to Greg and I, that there was nothing else that we could do. In fact, at this point continuing treatment would just prolong Benjamin's discomfort. We made the difficult decision to let him go.

We continued with comfort measures, and he never was in pain. Either Greg or I held him for the next eight hours, after everyone in our family came in to say goodbye. I dressed him in one of the few outfits that I had bought for him. I was scared before he was born to buy anything, because I was scared that he would never come home. But I had one sleeper that fit him perfectly. I wrapped him in his blanket, and we enjoyed holding him close. After he passed, and we were spent our time alone with Ben, Dr. Gazit came and prayed over him. What a wonderful doctor and person. We were so glad that he was there.

For five weeks I have spent every moment at that hospital, either in person or in thought. The CICU is a surreal place. Behind those doors is an alternate universe. Three children died there in the past week - Drew, Ben and a sweet two year old named Elijah who spent his life also battling hypoplastic left heart. The grandmother of Drew and I spoke of this at Drew's funeral. When you are living this, it is hard to be outside of the doors of the CICU, to see everyone else living life so normal, without this pain. I am not sure what I am going to do after the funeral. As I said, every waking moment has been spent trying to save Ben. Now all I can think about is that he is gone, and that I will never get to see the wonderful boy that he was going to be. The pain is unbareable.

I want to thank everyone who has been following this blog, for all of your prayers and support. The gifts, the e-mails and comments, those who came to pray over Ben, words cannot express our appreciation. I know how much everyone cares, and how everyone wanted just as much as we did, for Ben's journey to end differently.

I never ever, not even the last day, believed that this would happen. When on December 19th we learned of Ben's heart condition, I had to believe that he would be OK. These last six months have been very difficult, to be pregnant with a child that you don't know will survive, to deliver babies for a living, to be a doctor and know too much about what elevated creatinine levels mean. But, to be a mother is about being there and loving your child no matter what, to have hope, and provide comfort. I think I did this.

Benjamin Gregory Ward

Ben passed away at 2:09 pm. Greg and I were with him the entire time, and he left this world very peacefully. This is the hardest thing, but the most important thing, that I have done in my life. We will never be the same.

We will update tomorrow when we have the specifics of the visitation. Thank you for your continued prayers and support.

Sad News

Ben is not doing well today. His labs got worse overnight. His kidney tests rose a little bit, as did his liver tests, suggesting that again these organs are not getting enough blood supply. He is again anemic, and his infection count rose. He had a slight temperature last night, but today his body temperature is too low. They are going to give him a blood transfusion, and check some more cultures. His heart rate and blood pressure are down a little today as well.

We have decided to make him a DNR, which means that if he arrests again, we would let him go. Otherwise, we will continue with all other present medications. They are going to tweak some of his kidney medicines to see if they can get any more fluid off of him. If his labs get worse again, Greg and I will have to make some decisions about some of the meds. There is really nothing else that we can give him or do to make his heart work any better.

My family has all come up today - my Mom and Dad, sister Laura and brother in law Tim. They are going to let me hold him later, after his temperature comes up a little, and they get his blood going. He is much more comfortable today, as they added some more medicines to relax him. We are trying to decide when to bring the girls up to see him. They are at the Magic House this morning with the babysitter, so we think we will wait until tomorrow. We'll see how he is later today.

I will update again later today if anything changes. Please pray for Ben, that he remains comfortable, and that Greg and I are strong enough to make the right decisions for him.

You'd Cry Too If It Happened To You

Ben has been much more awake today, which is not necessarily a good thing! He tends to get himself pretty worked up when he is awake and drops his O2 levels. Who can blame him? He's swollen everywhere, he's got all kinds of tubes and lines, and his mom can't hold him. You'd cry too! He looks like Sophie when he cries, without the noise. Of course, if he is anything like Sophie, we should bring in the hairdryer to soothe him - that might help more than the narcotics.

Labs are all stable today. No changes in any of the levels. His electrolytes are less unstable, and his urine output stays good. He didn't gain any more weight, so this is positive as well. The kidney doctor says that she is not discouraged that his creatinine levels have not dropped further; she says that she is happy that it hasn't risen. That made me feel better. His bilirubin also did not increase, so I am pleased with this as well.

The CICU doctor says to look at the big picture and at periods of time, rather than daily changes. It is a slow recovery process. I am trying to do this, and not to look so closely at the labs each day. I have never been the most patient person in the world, so I'd rather see big and fast changes. But for now, I'll take any positive news at all!

They Call Me Mellow Yellow

As I said yesterday, every day brings a new worry. Their new concern is the liver, and the fact that his bilirubin (which causes his yellow skin) continues to rise. Whereas last week they told us that it could take weeks to get better and this was not a concern, today they tell us different. They are now worried that there is permanent damage to the part of the liver that excretes the bilirubin (the biliary tree) and that overtime this will cause him to go into true liver failure. Again, if this is the case, he cannot get a heart. Before they had told us that his liver dysfunction would improve with a new heart, and we were only fixated on the kidney function. More to worry about.

His labs look the same as yesterday. The kidney tests did not change. His bilirubin did not go up - it stayed at around 30. This is the first day that it did not rise, so hopefully that is a good sign. He has so many strikes against him; it is hard to remain optimistic that all these systems can recover. I really am trying though.

I used the flash on this picture, so that everyone could see his true color! He is a little banana. He actually does not look any yellower today than the past few days, I was just being kind to him in the photos by turning off the flash. His weight went down by about 100 grams. Not a lot, but at least he didn't gain anymore. There is no more room in his little swollen body for any more fluid!

Ups and Downs

I spent the night again last night - I feel better when I am here. He had a good night, and his urine output has continued to increase. His creatinine also improved slightly, to 1.7. He is still retaining a lot of fluid, though, and his weight is up by almost 2 pounds in the past five days. And I don't think that is because of the 15 oz of breast milk that he was getting.

Today he is dropping his O2 levels more than in the past few days. They have had to increase his oxygen level on the ventilator. If he stays calm and sleeps, he does OK, but any stimulation drops his levels. He just doesn't have any reserves. They have increased his fentanyl drip trying to keep him more sedated, and right now he seems more comfortable again.

Every day brings a new worry. One day I am excited about his seemingly improving kidney function, and the next I am worried about his difficulty keeping up his O2 levels. It is so very stressful. I am just so worried that they won't be able to keep him stable enough with all this extra fluid in his body to make it until his kidneys really start working again. Hopefully, tonight will be calmer.

If anybody is interested, and I know there are a few photographers and creative people out there following this blog, my sister created a link at the top of the blog to send in photos for Ben. Essentially she is collecting a gallery of prayers, thoughts, and support for Ben. If interested, follow the link or go to her blog (Boeker Family Blog) and e-mail her some creative photos. If you're not so good at those things (like me!) then feel free to view it and see all the pics that friends and family have sent, and say a little prayer for Benjamin!