A Gleam of HOPE!

Today we had our first ultrasound of 2012! Every time I walk into Christie Clinic, I just want to curl up in a corner and cry. If there is any place that robs me of my hope, it is there. But today, for the first time since this horrific thing came into play, we felt HOPE. During the ultrasound, right away, the boys were quite the wigglers. There is still fluid in both babies, BUT the fluid has not increased. Their lungs, bladders, stomachs, kidneys, hearts, etc all seem to be functioning properly! Dallas is measuring at 25-26 weeks gestation and Carter is measuring at about 20 weeks. It is hard for them to know their exact weights because they go off of the measurements taken during the ultrasound. Because there is fluid, it throws off their measurements. So technically Dallas is weighing in at 2.6lbs and Carter is weighing in at 1.6lbs, but that isn't their realistic weight since the fluid has enlarged their abdominal measurements. Their heart rates were 140 & 150. We hadn't seen this sonographer since she initially found, what she thought, was the twin-twin-transfusion syndrome. We told her everything that had happened and all the confusion from different theories being thrown at us. You could tell she had a gleam of hope for us but didn't want to say anything just yet since we hadn't spoken with our doctor.

So after the ultrasound, we go back into the waiting room to be called for our appointment with Dr. Nelson, our regular OB/GYN. My blood pressure was taken and it was fine and I gained almost 3lbs in 2 weeks. We get called back to meet with Dr. Nelson. We were armed and ready with our laundry list of questions. For the first time, she admitted, they did not know what was going on or what would happen. She told us that nobody thought we would have made it this far, so something is going right. Dr. Nelson said the boys are stable and not in any distress at the moment. We asked about the steroid shot and she said as soon as I have signs of preterm labor, the shot will be an option for us (YES!). She said the fluid has not increased, which is great news and hopefully it will stay that way. For the first time, we got to discuss long term plans. I started to cry. This was all I wanted. Hope. We discussed what measures can be taken when I go into labor. And not preterm labor... but regular 38 week labor! This was HUGE! She is going to arrange for us to meet with the 3 neonatologists at Carle so we can discuss anything and everything having to do with delivery in our situation. So then we asked, why our case was given 0% chance of survival. She told us that because it is non-immune hydrops and they have a lack of cases to compare us to, their automatic response was 0% chance. I am still baffled by this! Why would you rob us of all of our hope because, you just didn't know. But anyways, she told us that really, the chances of survival could change in an instant so to put a number out there today, wouldn't necessarily mean it would be the same tomorrow. We can live with that... because that means there is HOPE!

I will be in my third trimester right around Valentines Day. So in honor of that, we will be finally, getting the nursery painted. We may even start to plan a baby shower! I've only bought 2 items (a lamp and a sound machine) because we were waiting to find out their genders. When we found out their genders, we found out about the hydrops which lead us to believe we would never get to have our babies, which lead us to not buy anything for them for fear they wouldn't make it. So today I type with happy tears... we have HOPE! Not only do we have hope, but our doctors do too!

Enjoy the cute ultrasound pictures!!

Dallas profile - abdominal fluid seen on the right

Dallas feet! Love this picture!!

Dallas boy parts :-D - Jacob's proud moment!

Carter's Face & Abdomen

Carter's foot :-D

Carter's boy parts - Jacob's other proud moment!

Dallas & Carter's abdomens - black areas inside bellies is fluid

Sunday Sorrows

Waking up at 4AM to kicks in the "hooha" wouldn't sound like the best part of the day to most people, but to me it's the greatest part of my day. Everyday, I fight back the tears of the "what ifs" and try to continue on like everything is fine. Not so long ago, I can remember saying I never wanted kids. I love kids, but never wanted any of my own. Meeting the husband of my dreams, allowed me to make more room in my heart for the possibility of a child in the future. When we found out we were expecting, I was scared, happy, nervous... every emotion! Then when we found out it was twins... I thought it was life's funny way of saying "one?... HAHA.... oh no lady... you get TWO!", and it was awesome! At first all I could think about was "now I have to buy 2 of everything!". Then it grew into pure excitement. Then when we went to find out the genders, we ended up finding out our babies were fighting for their lives with this stupid thing called Hydrops. Life, you are not funny anymore! How can you take me from never wanting kids, to expecting one and loving it, to finding out we are having two and really loving it, to telling us we will never get to the middle of the 2nd trimester because they will pass. Then you give us hopeless doctors and to top it off some extremely strong boys who continue to fight. I am not saying I want their fight to be over. I just want to be out of this state of limbo. Unless you've gone through something like this you may never understand. They weren't supposed to make it this long, so the doctors just keep telling us, it won't be much longer... every time they see us. Every kick I question, "is that the last one?". Every pain is "is this it?". I see all my friends with babies or expecting babies and I just want to curl up in a corner. Every time I go upstairs to where the nursery is or was going to be, I wonder... should I be getting ready to bring two babies home. Should I get the walls painted? Should we start purchasing baby items? Should I have a baby shower? When people ask me about my pregnancy and they don't know the story behind it, should I act happy? My answer is no. I can hardly stand to see the room as a spare bedroom. I can only imagine what it would be like to see it as a nursery everyday just to know that I might not be able to fill it. I want to make all these cute crafts from Pinterest for the boys. I want my mom to be able to make the blankets and cute outfits that she was so excited about in the beginning. I want to be able to give them grandkids. I want to talk about baby stuff with my friends. I want to know what it is like to be expecting  healthy babies. But most of all, I just want my babies. But I may never get that chance. Today, I am thankful for being able to get pregnant, but angry at the world for what it is putting us through. I always try to remind myself that life would not have thrown this at someone who could not handle it, but I continue to ask anyways... why us?

This post is just to mark another landmark day... 23 weeks today and still kicking! There are on a pretty set schedule it seems like. Between 11am & 2pm and 7pm-11pm they kick the most.

Fingers & Toes

Dallas

Top picture is profile and hand

Bottom picture is one of his feet

No hands and feet pictures for Carter yet. :-(

Ultrasound Pictures - December 2011

The top two pictures are of baby A (Dallas) and the bottom 3 are of baby B (Carter). You can see in the abdomen area the black is all the fluid around their organs. You can also see the skin thickening on their heads and the little fluid under the skin and on top of their skulls. Dallas was the most affected by the fluid as of late December. I hope to scan more u/s pictures later. We have some cute ones that show their little fingers and toes!

22 Weeks & 5 Days

I'm hoping this blog will help me document my feelings, the doctor's findings and just memorable moments of this pregnancy. Our doctors have been so set on the idea that the twins will not survive, that they forget that they are STILL ALIVE. I feel them kicking and my belly getting larger and I cannot help but think there is a chance for these boys. Why is our case destined to end badly? Why do I meet people in hydrops support groups who were given less than 5% chance of survival, yet their babies are alive and well. We know that hydrops is severe and does take the lives of too many unborn and newborn babies, but why can't we beat the odds? Why can't we be one of the miracles?

We loved our doctor at first. She came highly recommended by friends and from the clinic. The moment hydrops develops, she turns into a hopeless healthcare provider. We asked her why she didn't want to see us for an ultrasound more than once a month, and she said "Is it really going to help you? Because there is nothing I can do". Um... maybe we will know when it gets worse by seeing them more often... or get this... MAYBE we will see they are getting better! They did not expect them to last this long, so obviously something is going right at the moment. They treat them as a hopeless cause instead of 2 twin boys fighting the fight for their lives. They expect us to miscarry this month, yet gave me no advice on what hospital to go to or how I will know if I miscarry. They are so set on the boys not surviving, they haven't discussed with us delivery options, what happens if I do go into preterm labor, what measures will be taken before, during and after delivery to save their lives. I'd love to get more opinions, but we've already seen 4 specialists who all seem to be saying roughly the same thing.

Thanks to Dr. De Lia's advice, I started drinking 2-3 Boost High Protein drinks a day and finally started gaining pregnancy weight. Thanks to him for the nutritional advice (that I never got from our other doctors), I feel I am finally able to truly give these boys a fighting chance. And we will continue fighting for these boys until we get to hold them in our arms, regardless of the circumstances.

22 weeks and 5 days STRONG