Sunday, February 25, 2007

nursery looking good (updated)

I finally finished the painting. It has definitely grown on us. We each stop every time we walk by the nursery and stick our head in. It looks better every day. It isn't nearly as bright as I thought it was and it will be even better once we get the furniture and wall stuff in there.

I'm standing by the window looking back at the closet. We're going to get new doors and put in of those cool closet organizers with shelves.

What'cha think? It really grew on us. We think it is going to be great.

It's okay if you don't like it. Our close friends went to Oregon State and their rivals are U of Oregon...the ducks...whose colors happen to be green and yellow. It wasn't their favorite choice of colors. I understand that. If they had painted their nursery burnt orange, I probably would have thrown up...literally.

Other news...we have come across some great stories and even more phenomenal people. Two quick stories....

We were at Toys R Us on Tuesday after our appointment looking at some of the stuff we registered for. We were looking at the big double stroller as another couple came around the corner and were looking at the same stroller. They asked if we had twins and we pointed to Lisa's belly. They told us that they just came from the hospital where their baby girls are in the NICU. They had complications (not TTTS) at 24 weeks and were flown from their home in Kodiak City to Anchorage to go on bed rest at Providence hospital. 3 weeks later, their 2 baby girls were delivered. We never found out their weights at birth but at 27 weeks, we imagine they must have been pretty tiny. 1 month later, the 2 of them (actually the 4 of them) are doing good and expect to be going home in another 3 or 4 weeks. We talked for 20 minutes and shared both of our stories. I've said this before but it has been very reassuring hearing similar stories and the similar emotions that others have gone through. It was so uplifting...and truely an amazing story.

On a side note...the guy was a Coast Guard rescue swimmer!! What a bad ass! He was telling us how when he found out they might lose their girls, he cried for 2 days straight. His wife kinda chuckled and said, "yeah, a rescue swimmer crying for 2 days straight?!" I nodded and let him know I went through a very similar time where I didn't know what else to do but cry. It was such a random but touching meeting. When we left, I turned and asked Lisa if that really just happened? It was if God just put these 2 angels in our lives minutes after we left our last appointment with the most sobering news we'd had in the last several weeks.

The other quick story is a couple that posted a message on the Week 25 update and also posted on the TTTS foundation forum. Many, many stories have touched our hearts but being able to read Kevin and Danielle's blog from diagnosis to present (2 healthy 5 month baby boys) was an incredible experience. I was moved to tears several times and am SO happy for you and your boys. You have touched us sincerely and echoed our sentiments. I pray that we will be as fortunate and brave as the two of you were through your ordeal. I've linked their blog at the top or you can click here and check it out.

While we put faith in God that everything will work out, it is without a doubt the most trying time I've ever gone through and know that it will only get more difficult until those babies are in my arms. Thank you for praying for us. We thank God every night when we lay down and pray together that we have so many wonderful people thinking of us.

One more thing. Our dear friend, Vanessa (blog here), got us connected with an organization called Twin Hope. It is a fantastic resource. She also got us bracelets to wear and Lisa a necklace with the Twin Hope logo on it. Very cool stuff. You can go here to check it out.

An organization that we turned to the minute we were diagnosed is the TTTS. The people over there have been fantastic and so supportive.

I just realized why I'm thanking everyone. I'm watching the OSCARS!!! It's put me in the mood to thank the people that have supported us. Pretty funny actually. I guess this is the time where the music would start playing and I begin yelling that I'm not done yet.


Tuesday, February 20, 2007

Week 25

We had another good weekly appointment with the specialist today. I'd be lying if I didn't say it is still unnerving (if that's a word). We had a reality check twice...the first was with the tech who initially didn't see the pattern he wanted to see on the blood flow through the umbilical chord. He looked at it for what seemed like 5 minutes but was probably only a minute or two before finally saying..."ok, there it is". I'm not sure exactly why it was showing up that way but it was a moment of concern.

The doctor came in afterward and had the same problem. He initially didn't see the pattern he wanted to see but after a minute or so, he got what he wanted and was satisfied. I know I'm not explaining it very good.

The second moment was the second the doctor sat down next to Lisa and began looking at the ultrasound, he said "well, you definitely still have it" or something to that affect. It wasn't exactly what I wanted to hear but it is a good reality check that even though we aren't going to have the surgery, it is still a serious condition and will have to monitor closely.

I'd share the numbers they found but the tech again insisted they aren't relevant. Bottom line was the donor has room and there was still plenty of fluid in her bladder. I shouldn't say plenty because this ultrasound seemed more like that first one 3 weeks ago when it didn't seem like she was very restricted. The doctor was pleased and not concerned with anything he saw today so we've bought another week.

I asked about what he thought the time line is...if he thought we were heading down a path to a very premature birth. He seemed confident that we would make it through 30 weeks. We have been praying for and will continue to pray that we make it as long as possible.

Tomorrow is Lisa's diabetes test and the first of two shots to boost the babies lung development in the pretty likely case that they will be premature. Next Tuesday will be a long ultrasound (30-40 minutes per baby) and we'll get an estimate on their weights.

The nursery is painted but needs one more coat before I share any pics with you guys. It is certainly yellow. It's growing on us but boy is it yellow. I honestly don't know if I like it but I can't imagine painting all over. What a pain. It better grow on me fast.

Here's a couple pics from today's ultrasound. The first one you can see some one's butt right up against the other's head. A second after he printed this out, she pushed the butt away. It was pretty cute. The second one is right after that with her hand still up by her head ready to punch anything that gets close again.

it's after midnight.....

and I'm still up....and I have to work tomorrow. Uggghh! What a long day. I didn't start painting the final two walls until 9pm so I only got the first coat on. Pictures will have to wait until tomorrow night when I'm all done. Tonight it was; walk the dog, fix dinner, eat dinner, tape the bedroom, paint paint paint, dishes, and here I am. Some VERY NICE PEOPLE brought Lisa and I dinners for the next couple of nights so that will help out a ton. Thank you!!

Tomorrow...errr today or whatever, is our weekly checkup with the specialist. It is significant because it's the last chance for the surgery. It is looking like that won't happen so we're not really concerned about it but it is a milestone. Now we just have to keep those babies in there as long as possible. I'll write more about that later tonight after the checkup.

I'm actually just posting this to share a funny picture. It's a long story so I'll just leave you this image. I made myself laugh for a solid 10 minutes when I put this together. It may only be funny to me and Lisa but I'd thought I'd share for the world to see.

Sunday, February 18, 2007

nursery progress

I was lucky enough to have a 4 day weekend and made a lot of progress on the nursery. The office/nursery is a TINY room next to our bedroom that has evolved into a place where we throw crap when we have visitors...then shut the door. We would clean it out occasionally but haven't really touched it much since we found out we were pregnant knowing that we would have to move everything out of there. That day was today. I'm embarrassed to share this first photo because it looks SO bad but you have to see how much work I did this weekend.

I should mention that Lisa's mom organized a lot when she visited last month. She also cleaned out the closet. So the first task was to move everything downstairs and then take apart the desk.

The desk is a huge corner unit that came apart in 3 sections. I had warned a couple friends that I may need some help getting the desk downstairs but somehow managed to carry each piece down with minimal damage to myself, the desk, and the walls.

The room was empty by yesterday afternoon so we made a quick trip to Lowe's to pick out the paint. That's right, I said WE. Lisa took the trip too and managed pretty well. We decided on green and yellow to go with our pattern that we selected from Babies R Us.

Here is the empty room yesterday afternoon and the room right now after 10 hours of painting today.

Why 10 hours? Well I had to do a primer on the one big wall and on the window frame AND door frame before I could put on the final green coat. What a pain!! Who paints a door frame??

What's left? The green is done. All I have left are two walls to do the yellow. I am hoping to finish both tomorrow (Monday) night. I will of course post the pics when it's completed.

One more quick story. Early this morning Lisa woke up to go to the bathroom and as she always does, looked down to our backyard to see if there's a moose down there. Well this time there was. There was an adult all curled up in a ball sleeping in our backyard. Lisa woke me up to show me and then I quickly fell back asleep. When Lisa got back in bed, Madison jumped up on the bed (which she never does) and circled between me and Lisa until we gave her some room and she curled up right between our legs. It was all pretty cute.

Lisa snapped this picture before she got back into bed.

Tuesday, February 13, 2007

Tuesday evening update

We're at the end of another very long day...another good day. We had our weekly appointment with the perinatologist, actually the technician. It was only about 20 minutes long but long enough to get all the measurements and know that we didn't have to go to Seattle for the surgery. With each passing day, it looks less and less likely that we will need the surgery.

Although the technician said the numbers are "irrelevant", they were 9.12 and 5.61 centimeters. As a refresher, the donor was 2.3 -> 7.4 -> 5.6 cm. The recipient was 9.6 -> 9.1 -> 9.1 cm. He kind of stressed this last week that the maximum vertical pocket that's being measured was an indicator that the problem could be serious but was not the "tell all" that they are looking for. The majority of the visit was spent measuring the blood flow through the heart and in their brain. I tried to ask more specific questions about how that is looking or if there's a range we should be looking for or anything else and he said that is all looks good. They are looking at the shape of the return that he gets from measuring the flow and that will be compared to the previous week to look for trends.

The doctor didn't stick his head in like he did last time to reassure us that everything looked good but the technician said that he didn't see anything that would warrant any immediate response and that the doctor would call if needed after he takes a closer look at the results.

It's all good news. 2 weeks ago we left the room in tears because we were so scared. Last week we were in tears because we were so relieved and happy. Today we just left. We were, of course, happy to not be on a plane but after last week weren't really expecting any dramatic changes. This felt like a check-up and not a diagnosis for the first time in a while...which is good.

Both babies were active. Lisa had a few moments this week where she had not felt them kick in a while and became concerned...concerned enough to tell me and then have me come over and feel her stomach until I felt them both move. So it was a relief to see that they are moving in there NON STOP!! It was good for Lisa to watch them kick and swirl and stretch and still not feel a thing. We got some more pictures but ran out of time this evening and didn't scan them in.

For those of you who have asked, we have registered. We registered with Babies R Us. Be careful though, we found another couple with the same names registered in another state.

We've had a lot of input from our friends who had the twins last year. We are also receiving some hand-me-downs from those twins since they are now a year old and outgrowing some things so we didn't register for some things like a bath tub or bottles.

Nursery update....there is none. :( The goal is to have it emptied out and painted by Sunday!! I've taken the before pictures so now all I have to do is....well everything.

And the names. Sorry just another teaser. We are still debating the spelling. I thought we were in agreement but apparently there is more than one way to spell Chrysanthemum and Aloevera....that's weird.

Keep the prayers coming and thank you for checking in on us and thinking of us.

Thursday, February 08, 2007

23 weeks and 1 day

I don't know if anyone caught it but there was a show on the Discovery Health Channel the other night about twin-to-twin transfusion syndrome. I was at work but Lisa saw it while channel surfing. She recorded it for me to watch because she wasn't sure if she wanted to watch it alone. That ended up being an good idea. I watched when I got home from work yesterday and it left me a little speechless.

It followed 4 families as they went through the diagnosis to delivery. Of the 4 families, I think 3 of them ended up having the surgery. One twin did not survive out of the 4 families and it was one that had the surgery. The one family that didn't qualify for the surgery made it to 33 weeks and delivered 2 healthy girls with no problem.

I took several things away from the show. One is that the emotions that we are having are normal. It was reassuring to see the strangers going the exact same challenges we're facing and vocalizing our exact thoughts. It also showed me that we may really not be able to relax the rest of the pregnancy. I had hoped somehow things would continue to improve and we could just sail through 37 weeks or so...not gonna happen. Every couple stressed until the minute they were born. That means we could have 2+ months of worrying ahead of us.

Yesterday was a good example of that, though. Lisa kept saying during the day that she didn't feel right. The babies were constantly moving around and nothing seemed abnormal but she couldn't get comfortable and couldn't get it out of her head that something might be wrong. In the evening, she had what we think was another Braxton Hicks contraction. This was one a little stronger and more uncomfortable for her. It was only one though and she settled down after that.

During the show I was also able to see exactly how the surgery is performed. Again, I don't know if that's what Lisa would want to see. It might be enough for her to know how it's done without actually seeing it happen.

One more thing...I wanted to point out something that might be hard to visualize. This picture that I posted before is the donor baby. She has a name but you have to wait until the rest of the family knows. The donor is the one who is losing fluid in her sac. This picture was taken last week when the maximum vertical pocket of fluid was down to 2.3 cm.

Why I'm bringing it up is to show you how little room she really had. If you look on her face, you can see the membrane actually come off her forehead and then across her nose. You can see it again as it comes off her chin and goes down to her chest and then finally it comes off her belly on the right side of the picture. When there's that little fluid in there, it sucks up against her body and pins her down. On Tuesday when we looked, we didn't get to see the profile like this but the membrane was well off her and flapping around to the side every time she moved. That's why it was easy for us to see the difference right away and not have to wait for the technician to tell us there was improvement. It was obvious there was a lot more fluid in there with her.

I know there are some people that are checking the blog now that have more experience with TTTS so feel free to correct me if I'm wrong but that was how I understood it.

Again, thank you everybody for the emails, phone calls, and comments. We try to email everybody back but know we're missing some.

I am off for the rest of the weekend and plan on working on the nursery!!!! We also will be registering (finally) and pass on that info when we finish that up.

Tuesday, February 06, 2007

good news

The appointment went great today. It was mainly an appointment with the ultrasound technician with the doctor just dropping in for a few minutes to look over the results. The technician answered all of our questions and seemed very positive that we would not need the surgery today.

I immediately noticed a difference on the amount of fluid around the donor. It seemed better to me. Later when he looked for the maximum vertical pocket he showed us 7.38 cm!!!! It was 2.3 cm last week! The recipient is at 9.1 cm...she was at 9.6 cm last week.

We were ecstatic about those numbers but the technician warned us that although the numbers are great, that is only part of the equation. He is more concerned about the blood flow. He spent the majority of the time looking at the blood flow through the arteries in the heart and in the head. He said it will be the blood flow that will dictate whether surgery is required or not...and he and the doctor said it all looked good.

Bottom line, no surgery today and we'll look again next Tuesday. We were in tears we were so relieved but realize we have a long way to go. This was a big victory and hopefully a sign of things to come.

Keep the prayers coming. We know the real reason we've seen improvement. Thank you so much everyone. We love every one of you.

BIG day today

The appointment with our OBGyn went very well yesterday. She was very reassuring and optimistic about our situation which is exactly what we needed. I told her about the relatively pessimistic numbers I had come across regarding the surgery and she seemed to think that those were too low and had a much more optimistic idea of the success rate. Many of the questions we asked she deferred to the perinatologist but she was very patient and answered almost everything we threw at her.

One concern of hers is the possibility of delivering the babies early. The goal is to make it to 28 weeks (we're at 22 weeks, 6 days today). With our next appointment with her in two weeks, she is going to begin shots to help the babies lungs develop quicker so they'll be ready for an early exit if necessary. We'll find out more today of course but one concern is this window between the surgery and earliest delivery time. I believe the latest we can have the surgery is at 25 weeks but the earliest we can deliver is 28. So if the surgery happens it will be tomorrow or next week. With the surgery, it should buy us enough time to make it to 28 weeks...and beyond hopefully.

After our appointment, one of my concerns is regarding our babies "maximum vertical pocket" of amniotic fluid. What I've learned is that surgery will be more seriously considered once the MVP is over 10cm or under 2cm. I asked and as of last Wednesday they were at 9.6cm and 2.3cm. To me, that seems to indicate that surgery is inevitable. Certainly there is a chance that with bedrest these last couple of days, the levels could have remained the same or maybe improved but it really doesn't leave much room to maneuver.

With that news, we are preparing ourselves to head to Seattle today. I may have said Portland in a previous post but it's really Seattle. I'm working night shifts this week so the boss has put someone on call for tonight. Our neighbors said they would be happy to watch after Madison (our dog for those of you who don't know). So we'll be going to the hospital at 2pm and will probably know within the first couple of minutes of the appointment.

Now for the good news. The response that we continue to get from our family, friends, and strangers has been so uplifting. We are amazed every day at the response we get in emails and phone calls. Thank you so much! It is really helping. I actually printed out a lot of the emails yesterday and took them with us to the hospital so we could read through them again to remind us of all the people praying for us. We are NOT alone! Thank you!

One response I got yesterday was from a woman who under similar circumstances, had the surgery done in Seattle with great results. That was the most comforting news we've received throughout this process...someone who had the surgery in Seattle, made it to 34 weeks, and delivered two very healthy babies. It is very uplifting to hear that kind of story right now, I can't explain how much that helped. I think Lisa's response was, "THAT'S what I'm talking about!!!!"

I have also emailed Dr. Julian DeLia who is a pioneer with this procedure. From what I've read, he continues to be involved with MANY cases and would most likely be able to consult on our case. Unfortunately, we may be running out of time but hopefully I'll hear back from him today before we are forced with any decisions.

One more thing, I came across this article that is a very good summary of TTTS and what we're up against. article

I'm sorry this is kinda wordy but I wanted to update everything just in case we're in Seattle tonight and can't post.

I will certainly post, email, and call the minute we know what's going on. Please continue to pray for us today.

A & L & the girls

Sunday, February 04, 2007

coping with the news

So as you may have been able to tell from the last post, we were pretty emotional about the news. During the pregnancy, it never crossed our mind (and why should it?) that there would be the potential that we could lose our babies. So we took that initial shock pretty hard but have been doing much better since the first 36 hours or so.

Lisa did better than me. I think the motherly instincts kicked in and she realized that worrying wasn't going to help the babies but resting and thinking positive would. She finished up work on Thursday and has spent Friday and yesterday glued to our favorite recliner in front of the tv.

I, on the other hand stayed home from work Thursday and spent the day pretty depressed. I slept most of the day and when I was awake, I just sat there and stared at the wall thinking. Not very productive considering we have a nursery to finish....err I mean, start.

Since Lisa got home Thursday evening and we were able to talk some more about our feelings, I discovered how well she was doing and her spirits lifted me up. She told me that although it was tough sharing what was going on and she cried a lot during the day, she also had some wonderful moments like when a principal of a school that had been tough on her all year sat down and prayed with Lisa in her office!!! WOW!

Then the phone started ringing...and ringing...and ringing. You guys have been the best! Just knowing that our family and friends are all over the place praying for us is SO uplifting. We really do feel better and know that is translating to the babies too.

So what's next? Tomorrow we go in for a routine appointment with the OB. I'm sure there will be lots of Q&A tomorrow but we probably won't learn anything new about the babies condition. On Tuesday, we will go to see the specialist who will take a look at the babies and see how the fluid is. I'm guessing there may not be much of a difference from last week. This will be just to make sure it isn't getting worse I think. If it is worse, we will be on the first plane to Portland, OR. The appointment is at 2pm and I'm sure we'll know within the first 10 minutes if we're going or not. I'll be sure to post the results as soon as we know them. It may be safe to say, if you don't see a new post by Wednesday then we could very well be in Portland having surgery.

The other news I want to share is the names of the babies. Since they are easily distinguishable now and we had pretty much secured which names we wanted, we went ahead and named them Wednesday night. I'll okay it with Lisa and probably tell the grandparents first but hopefully share that tidbit with the world in another day or two.

Keep us in your prayers.

In the mean time, here's Lisa at 21 weeks and what we were doing Friday night to entertain ourselves while Lisa's on bedrest. If you can't tell, Lisa's rocking on Guitar Hero. I believe she was playing Sweet Child O Mine.