Another day, another ultra sound

So today I was visited by Jared's father and enjoyed lunch and watched Law & Order! This weekend we had Jared's grandma and cousin over to hang out with me all day! I'm so lucky :)

This afternoon we had another ultrasound. Her heart rate is about 153b/m and she's about 13 oz. She's growing and moving around lots... but also she's still head down! She does not want to move and she thinks she's ready to be delivered!!! We are set up for another ultrasound next week Tuesday and then in 2 weeks we will have an Echo to check her heart again. All in all, she's doing well!

So I snuck out today! SHHHH. We went to Babies R Us and played with strollers and found bedding! I also realized that I LOVE bedrest. lol... it was cold outside and I got tired really quickly!... I'll be fine in bed for a while longer!

So basically we have our registry prepared. We're registered at Babies R Us and Kohls listed under Lorel & Jared Smith. We're also experimenting with cloth diapers. I just ordered 2 one-size all in one cloth diapers. I've been researching them for a while and think it's the way we want to go. Now these are not your gma's cloth diapers. The ones I am looking at are very similar to disposable diapers, but you keep using the cover until it's soiled (10 changes/day... 4 covers/day). So you would change the inside prefolds with each change and add as many as needed to keep her dry. So we ordered 2 covers and are going to experiment with a doll and a turkey baster :-P

Thank you all still for your prayers, visiting, meals, cleaning, and just sending messages!

Bye Bye Cincinnati!

So today was our follow up appointment at Cincinnati!

Here is a recap of the progress with Lorelei's heart.

With regards to a heart, both the left and right ventricles are supposed to be performing at a certain rate labeled as "normal". This rate is .45

Before surgery Lorelei's heart (both ventricles) were at about .56... this constituted TTTS stage IIIc (I believe the beginning of that stage). This is where we get the cardiomyopathy. This is part of the reason we decided for the surgery. After surgery they expect to see no change. Apparently, our follow up 6 days after surgery showed that Lorelei's heart (both sides) went up to about .62 This is not good, so they had us return today for another follow up. After the ECHO today we got in early to see the doctor and he told us that things are looking better! Lorelei's heart is not recovered, however, her left ventricle is now at .48!!! Her right ventricle still has not changed, it is still around .62 The doctor is not overly concerned and stated that the right ventricle takes a longer time to recover/heal than the left. Same with the thickening around her heart, it has not changed. This is the last thing to see any changes.

So all in all, she is improving, but we're not out of the woods! They told us we did not have to return to Cincinnati and should be seen by a specialist in Indianapolis once or twice before delivery to ensure her heart is continuing to improve. We are to continue having weekly ultrasounds, unless my HR doctor says otherwise... and we are hoping for a delivery date of March 23rd at the earliest! I am also to stay on bedrest, STRICT bedrest for the rest of the pregnancy. As for any side effects of this for Lorelei, she maybe born with high blood pressure... but a good chance it will not have to be controlled by medication.

Also, last appointment we had her growth checked and she was 7oz and at the 54th percentile. TODAY Ms. Lorelei is 11oz and at the 85th percentile! She's a growing machine!!!

So here are the pictures that my mommy uploaded for me! I hope you can see them well enough. I'll be working on them some more to separate them and make them better to see. I have included pictures of Maddison as well...

Lorelei's surgery pictures. I think she looks like she's in a bubble.

I believe this is Maddison. Top left, is her profile; Top right, shows she's a girl; bottom she's waving!

This is Maddison. I think she took the best pictures... as you can see she was sucking her thumb in one picture.

Here you see Maddison. However, the feet that you see are Lorelei's. These pictures show Maddison dancing on Lorelei's head!

Here is Lorelei. You can see her head is covered because it is being crushed by Maddison :-P

All of these pictures, except the top were taken the day we were told the twins had TTTS. They both look health and happy in these pictures. So looking back at exactly 1 week after these pictures we were left with only 1 beating heart... it's almost impossible to "understand".

Routine

Ultrasound today at the hospital. Everything's fine. I'm wondering if the apparently routine results we're getting now in the screenings are lulling me into a false sense of security...realistically I know there is a good chance for preterm labor. I feel like Richard Dreyfus when the water is quiet...too quiet. On the other hand, the eternal optimist in me says that everything could and should be fine now and we'll have a happy healthy baby that we get to bring home if not the next day then in a reasonable amount of time. Of course, the house isn't ready for a baby just yet...we're gonna need a bigger boat.

P.S. just for irony's sake I feel it worth mentioning that I have never actually seen Jaws despite my apparent aptitude for quoting it.

154 beats/min

So we went to the doctors today to catch up with the doctor who will be delivering the baby. Not much to report, but she is moving all around and we just heard her heart beat which is at 154 beats per minute! I will update tomorrow after our ultrasound!

I was kicked

So being 18 weeks and 2 days everyone has been asking if I have felt a kick or movement. I have been questioning if I have felt movement or if it's just been "bodily functions". It's felt like tickling, and this week I have been wondering if my shirt has just been tickling me. This morning after I showered and got back into my horizontal position (laying down!) I felt an actual kick of something! I have no doubt it was her this time because I have never felt that movement before!

So here I lay... day 14 of captivity in my home. Connie got me an advent calendar so starting December I'll know what day it is and can stop putting the marks on the walls!

So this week I have been visited by Jeff (Jared's dad) and to day will be Grandma Nancy! We are so blessed to have family and friends in our lives that care so much. I still have not gotten over the "I need to entertain guests" instead of "these people come to help in the areas I can't do and provide me company". Connie is great to come over every Tuesday and Thursday to spend time and help a little around the house!

Feel free to contact us if you're wishing to come over and just spend time, help, or even take advantage of Jared's great cooking one night :)

Lorelei

16 1/2 weeks

Here is the picture of Lorelei during the surgery...

And the races begin!

So as most of you know, yesterday was our first ultrasound of many many many to come. They set this up to make sure Lorelei is developing well and does not suddenly fall into any complications. The tech looked through everything and kept us upbeat throughout the entire thing. She looked great! She's in the birthing position, and at times I feel like she trying to dig her way out! Her heart, from this ultrasound, looks great (said by the doctor). We aren't out of the woods, nor are we close... but I like to think of that ultrasound as an indicator of good things to come.

So I sit/lay/sleep/watch TV/do this/ surf the web/read/and AHHHHHHHHHH. All day, everyday! I am on strict bed rest, but I'm not entirely sure if it will last the entire pregnancy. I bet towards the end I may have a little more freedom, but then again I've never been through this and that's just wishful thinking!

So far Jessica (Jared's sister) came by and spent the day with me yesterday. We watched tv, the Terminal, and ate pizza. She was able to join Jared grocery shopping so that was nice@! We also ate a pomegranate last night... now when you have to go on youtube to find out how to eat something... that's crazy! I think the seeds are addictive, but it does lack quite a bit of flavor (but healthy stuff isn't tasty, right?) And I will be getting a visit from Great Grandma Nancy :) (don't hurt me!) on Wed. I'm really excited to see ya!!!!

Now, as things have calmed down we will most likely go back to positing random blogs that aren't as detailed. We really appreciate everyone's prayers, thoughts and warm wishes. I've received flowers, candies, and cards and cannot begin to thank you appropriately for all the gifts sent our way, but I'll try!

So just keep reading and we'll keep posting!

Lorelei's update

So I won't write this as well as Jared, but here's the basic update.

No changes for Lorelei. Her heart rate is still appropriate, blood flow is good and the ultrasound is overall positive. The echo on the other hand is what shows her heart and the progress of that. At 6 days after surgery it's not likely to see any changes, and that's where we're at. Her heart hasn't gotten worse, nor better. Her heart is thick and will have to work harder as she grows within the next few weeks and can possibly fail. I continue to take the perconium (sp?) and be on bedrest. We will have weekly ultrasounds at my high risk doctor and then bi weekly visits at Cincinnati for continued echo's until her heart starts to show improvement.

We keep praying and giving the doctors our full devotion and attention to make everything go as well as it can.

Thank you all so much for your prayers, thoughts and warm wishes. We wouldn't be getting through this emotionally without all the support and God's strength.

We're getting there...

So it's been a little while since I've talked to anyone or updated on this page. For obvious reasons I have been avoiding any contact with ANYONE. If you know me I tend to do better with such situations by not talking to anyone for a few days until it sinks in and passes the most painful stage.

Thursday night my parents called and asked to come out... all I could do was pretty much cry. They were out Friday morning. Knowing that you have people who care about you is amazing... knowing these people want to do things for you is awesome... letting them do both is crazy difficult. Jared and I are set in our ways, independent, and mainly self-sufficient. Knowing the doctors saying "make a list for people to do for you and LET THEM DO IT" really hasn't hit.

I'm on bed-rest for the remainder of the pregnancy. I have bathroom and microwave privileges at this time. Meaning that I need to be laying down 95% of my day... as most of you know we have a dog who's a baby but really NEEDY! And I can't really sit still! We just signed up for NetFlix so we can stream videos on the XBox and I have one more thing throughout the pregnancy to keep me occupied. Jess and Scott (Jared's sister and brother-in-law) got me an emergency bored box! I'll be tapping into that soon!

As for this time and how it's affecting me and more or less Jared...

We knew it was a possibility, but as Jared said... going in with two strong beating hearts and leaving with one really makes you think. As soon as I saw the ultrasound my heart skipped a beat and my first words were "she's not moving". I had no tears, I had no questions, I had nothing. Jared, nearly the same but almost physically ill. Seeing Lorelei's heartbeat "normal" as it has been and her fluids moving freely eased our pain just minimally. The doctors came in and as personable, caring, professional, and loving explaining their idea of what happened. We asked for time alone multiple times but were intruded on for multiple reasons... but as soon as everyone passed through we got time to speak to each other, or just sit. The hospital is amazing, our team was so loving and caring and personable... we couldn't of asked for anything more. We left later that morning to go home and rest until Monday.

Friday morning I woke up with a muscle ache and it wouldn't go away. So after jumping from the OBGYN to the MFM HR they admitted me to see what was wrong. We got to see Lorelei and hear her strong heartbeat. I think that alone relaxed us even more. The doctors here are great, but not as personable as Cincinnati (go figure). They monitored me and let me go with a pain medicine since Tylenol was not working. Going into the high risk doctors office I let it all out. Everything I was feeling just came out in tears. Jared held on tight and Dr. Carol held my hand. I could not even look at the ultra sound, for the image that is permanently engraved in our heads. Once they said she looks great I looked up to see her moving. At that point I realized that it's extraordinarily difficult to erase a painful memory from your mind... at night and throughout the day I see that last ultrasound at Cincinnati and it scares the hell out of me.

So we go back to Cincinnati on Monday (tomorrow) and have to be there at 8am for an ultrasound, then 10:30 for an echo, and then 3pm for a team meeting to review all their findings and where to go from there. Please keep your prayers going for all of us and our doctors that they can monitor us weekly for a successful remainder of the pregnancy. After tomorrow I will do my best to call everyone throughout the week who have been amazing enough to call me and send their love.

We will always know and love you Maddison and pray that you will be an angel for Lorelei to let her know that she's always going to be loved and special because she has you.

To LIfe

Despite the best efforts of our medical team, Maddison Olivia Smith went to her eternal home during the night. The image of her still body on the ultrasound with no heartbeat I don't think will ever leave me. Although I know intellectually we made the right decision to go ahead with the surgery, and that it gave both of them the best possible chance for survival, its hard to feel good about a decision when you go in with a live kicking baby with a strong heartbeat and come out with a dead one. I still feel happy about the vastly improved chances for Lorelei, but the moment is beyond bittersweet.

To spare any questions on exactly what happened: we decided to go ahead with selective fetalscopic laser surgery to sever the placental connections between the twins. The importance of doing so is that if one twin dies while they are connected the sudden catastrophic loss of blood pressure will kill or cripple the other one. During the surgery they were able to estimate that Maddison had only about a 15% share of the placenta. Generally to have a good chance of survival a fetus needs at least 20%. Now, some babies do make it on less, and we were hopeful, but realistically there was not much chance she could have been nourished to a viable size in time to be born. We're not sure exactly how she died, but mostly she just wasn't connected well enough to make it.

We wholeheartedly appreciate all of the prayers and support, please continue to pour it out on us as we have a long road ahead with Lorelei and making sure she comes healthy into this world. Lorel will be on bedrest the duration of her pregnancy, meaning she's more or less confined to the house. This will provide some interesting challenges, but you do what you gotta do. Peace and Love to all.

Rest In Peace

Maddison Olivia Smith

11/5/09

We never got the chance to meet you but we love you with all our hearts.

The Skinny

Here's the deal. We had an 11 hour day of testing and consulting with doctors. First I want to say the staff in Cincy has been great. Our twins have a disproportionate but still within normal range amount of amniotic fluid around each of them. They only have about a 17% growth discordance. They appear to have normal growth and development including brain development. That's the good news. The bad news is that our recipient twin Lorelei has some hypertensive heart issues. Her heart is thicker than normal from the extra stress. Maddison our donor twin's umbilical cord attaches to the uterine wall rather than the placenta and may not have enough of a share of the placenta to make it. We have decided to go ahead and have laser ablation surgery.

Lorelei's heart condition will most likely come out fine with the medication Lorel is starting, but Maddison's fate is very much up in the air. Please continue to pray for us as we are going in for the surgery at 9 am tomorrow.

CIncinnati

We are relaxing in our hotel room in Cinci trying to get ready for the start of our 5 day process. Lorel seems to be suffering some kind of allergic reaction and is breaking out in hives. Please be praying for her.

Please be praying for patience for us as I am sure this will be a long and sometimes frustrating sequence of events. Continue checking the blog as we will be updating at least daily to keep everyone posted.

Many thanks

First I wanted to say thanks to all who are keeping us in their thoughts and prayers. As stated in Lorel's post our twins are suffering TTTS. There are certain blood vessels in their placenta that are allowing them to share blood, and they are not sharing equally. Lorelei has far too much which can lead to problems like congestive heart failure, and Maddison has too little leading to anemia and malnourishment. The condition has a near 100% fatality rate if left untreated. Fortunately the treatment has very high survival rates. It entails going in with a laser and 'coagulating' the blood in the problematic vessels. Afterwards, the twins still get fed from the placenta but can't share blood with each other anymore.

I consider the string of coincidences surround our circumstances to be nothing short of miraculous: we found out we were having twins at 6 weeks instead of 22 (when the first ultrasound is normally performed), we started checking for the TTTS at 15 weeks instead of 16, one of the few fetal centers in the country that can perform the surgery is just 2 hours away in Cincinnati. The next closest one I know of is all the way in Philadelphia. From the early ultrasounds to having that center in our backyard, 'luck' doesn't even begin to cover it.

God has been with us so far through this process, and we give thanks. We are completely out of control, and as frustrating as it is to not be able to effect the process by our actions, it is a wonderful comfort to have the support we have around us from our medical practitioners, our family and friends, the Body of Christ, and of course God.