Thoughts...

I have been itching to write down my feeling. I really should start carrying a notebook because I have these thoughts that I want to remember and when I get a chance to sit down and blog, they are gone. It's hard to write on the computer when you have a monkey trying to "help" type. I really don't know how these "mommy bloggers" do it? I could do it at nap time but that is also my nap time as well.

Does anyone else feel like there is a dark cloud looming over 2013? I feel like everywhere I turn there is another story of poor prenatal diagnosis, babies and children passing away, marriages breaking up, cancer diagnosis, etc. I cannot handle it right now. It makes me a little terrified but also hopeful that 2014 will be a blessed year for everyone and that all these families can find peace. I admit I have sought out these stories a little for the sake of information and research but not most. I finally had to close my computer and take a break for a week because I just couldn't read one more story of heartache and grief. It was becoming too much for my heart and soul. I was internalizing so much of these trisomy stories, that I felt like I will never be happy again and that no baby will ever be born healthy again. I haven't gotten back on the computer yet as far as learning about what is going on with our baby girl. What is going on with her?

Gosh, it is so hard to accept that she is not well. On ultrasound, despite the fact she is small, you would never know anything is wrong with her. Typically, trisomy 18 babies have many problems you can see on ultrasound. Heart defects, failing kidneys, intestines outside the body, cleft palate, diaphramatic hernias, underdeveloped lungs. She has none of these. None. She is small and has a very mild club foot (which is common in twins). That's it. It's hard to know what to expect with the lack of problems. We were feeling hopeful after the fetal echo showed no heart defects but sobered up very quickly after the next ultrasound. We desperately want to have a crystal ball to tell us is she will make it to birth or not. We just don't know. All our wonderful doctor can tell us is statistics. Statistically, 75-90% of T18 babies will be stillborn despite the anomalies. The plan, or hope, is to get me to 37 weeks and deliver vaginally. My doctor doesn't want me to have to recover from a c-section (and neither do I), especially if she is born alive.

We are really trying to take it one day at a time. I'm searching for ways to connect with her and make the most of our precious time together. I'm struggling a little. I talk to her and her sister a lot. I'm slowly finding the joy in all of this because there is joy. She has her body and she will be perfected and resurrected. She will be watching over us and with us forever. But some days, some moments, I just can't help but think how much this sucks. I feel robbed of the joy I should be feeling. I'm jealous of anyone who is expecting a healthy baby. I'm even jealous of my former self a little. I look at pictures during our lowest infertility times and I think of how much easier that was compared to this. I think of the things I have to think about right now (infant caskets, funeral costs, saying goodbye) and laugh because I just don't believe this is happening sometimes. I've also realized that we haven't even really begun this journey. We haven't even lost her yet. No matter when that happens, I don't think I am prepared for that. We have the rest of our lives to remember her, to long for her, to wish she were here on earth with her family. Suddenly, I'm exhausted.

I have no idea what's in store. I'm just going through the typical phases of grief, though in no particular order. I understand that grief is not linear. One does not graduate from the first phase and move on to step two. I wish. One day at a time...

23 & 24 Weeks...

23 weeks

How far along? 24 weeks

Total weight gain? I think around 12lbs. It's going good. I'm not so concerned about the lack of weight gain now since they are monitored so closely.

Sleep? Not great, to be honest. I almost don't look forward to bed time (almost). I just can't lay on one side for very long so I wake-up every couple of hours to pee and turn over. It takes me a few minutes to get in a comfy position again. If I go over 2 hours without turning over, it's a great night but I wake-up sore from being in the same position for too long. I have to say my husband is one of a kind. Despite him having to get up early to go to work, he insists on getting up with Sam if he wakes up which has happened a lot lately. Poor kid has gotten 6 new teeth in the last couple of weeks including all four one-year molars (ouch!).

Best moment of the week?  Christmas! What a great day! We kept things really simple and had lots of fun just being together. It was fun to play Santa even though Sam doesn't really get it yet. He was still really excited to see all the presents under the tree in the morning.

Miss anything?  Sleep. Sleep. Sleep.

Movement? Yes! I've been so relieved to be able to feel them consistently. I am also starting to be able to tell them apart. That is also a relief. I have been afraid of going to an ultrasound and seeing that Baby A has left us and not even knowing it. I think I will be able to tell now if she hasn't moved. I have read that Trisomy 18 babies don't move very much in utero. This is not true for our girl. They are BOTH monkeys! I swear for three days straight, they didn't sleep because they were constantly moving! I talk to them when I first feel them it the morning. I say 'good morning' and tell them what we are going to do that day.

Food cravings? No cravings. I've enjoyed all the holiday goodies and the guilt free gorging. However, "goring" for me is pretty pathetic for a 24 week pregnant lady. I just cannot eat very much in one sitting and have to remind myself to eat.

Anything make you queasy or sick? Just reflux will occasionally be so bad that I have a hard time keeping it down. Pizza still makes me have reflux so bad that I throw-up. I think it's it the acidic tomato sauce. I avoid all things like that. My bottle of Tums is my best friend right now.

Labor signs? No and I'm not having as many Braxton Hicks anymore which is a relief. At my last ultrasound, the tech said my cervix was miles long. That made me happy. They last I need to be worrying about is preterm labor and bed rest. It makes me feel a bit more easy that I have technically reached "viability", although, I don't want them to come any time soon. It's just nice to know that if anything happens, they could survive. Every week from now on is gravy.

Gender?  My sweet girls. We finally have names which I will announce in my next post.

Symptoms? Heartburn, can't breath, can't get comfortable. 

Happy or Moody? Trying to be happy. I am happy. Writing things down helps but it always brings me back to reality. It's just so hard accept this. Sam makes me happy. The time I have with these girls makes me happy. Michael makes me happy. I still cry a least once a day but I think I'm more happy than I am sad.

Looking forward to...?  Our next visit with Angel Watch. I will write about our Angel Watch visit next time. It was very bittersweet and it is a wonderful program.

Realization of the week? Only 3 months until these girls come (hopefully not sooner). That sounds like an eternity to someone who feels like they are ready to pop but I'm expecting it to fly by. I feel like I have been stuck at the same gestation for a month. I think it's because when we found out at 20 weeks about our baby girl, time stopped in our world.

Weeks 20 & 21

22 weeks

How far along? 21 weeks

Total weight gain? I think around 10 lbs now. Half way there and still haven't gained as much as I did with Sam. It's a steady weight gain though. 

Sleep? Despite everything going on, I have had a couple of really great night . Only one potty break and not a lot of tossing and turning. I know I dream still but forget them quickly when I wake up.

Best moment of the week?  I can't honestly say that I can think of anything as a great moment. I have little moments of realization of how blessed I am. My little Sam can always bring a smile to my face. Another great moment was when Michael finally felt the girls for the first time. I hope he can feel them daily now so he can start to connect with our girls.

Miss anything?  When life was simpler? When life was blissful? I know I am being a downer but so many times this week I was wishing to go back to about week 14 when we thought everything was going to be okay. Blissful ignorance. That's what I miss.

Movement? Yes! They have both been head down and now they both have flipped to breech. I have been kicked where I have never been kicked before. Sam was always head down so I never got the pleasure of experiencing being kicked in the nether regions. Not surprising, I don't feel baby girl A as easily as her sister. She is much smaller and I fear that she is falling even more behind. Once in a while, I will distinctly feel her and it makes me happy and relieved. I am so scared she is going to pass away and I won't know it.

Food cravings? None this week. I have had to force myself to eat. I really have liked applesauce lately but don't have any on hand. I eat it at work. I try to up my calories but it's really hard when you have no appetite.

Anything make you queasy or sick? No. I have really felt pretty good physically. The heartburn is setting in big time. That was my biggest challenge with Sam and I have a feeling it's only going to get worse.

Labor signs? No, but having a lot of Braxton Hicks. I told my doctor about them and he said it's normal because having two babies will cause a lot more growing pains. As long they are not regular I should be fine. I have been trying to increase my water intake and that has seemed to help.

Gender?  My sweet girls. We are so close to nailing down names. We are so bad with names. Our names have to sink in before they stick. We are getting more and more anxious about them not being named under the circumstances.

Symptoms? Peeing at night, heartburn, and back pain. The back pain has been a little better in the last couple of days but I've had a few days off so it will start all over again when I work another shift.

Happy or Moody? Oh man. How do I answer this question? I just read what I wrote at 18 weeks and I want to cry. We will not be bringing home both our girls. How can that not make me moody? I have had some good days since finding out. I have had a couple of really bad days. Yesterday was particularly rough for no reason. I just woke up feeling like my world had been shattered. I couldn't wait for the day to be over because the next day had to be better. I understand a lot of about grief. I know grief is not linear. You don't move from one step to the other and never move back so that is all to be expected. I just long for those happy days. Today was much better but after I put my Sammy to bed, I felt the heaviness starting to weigh on my chest and I have been fighting it ever since.

Looking forward to...?  Being happy. I'm terrified I may never be truly happy again. I do have faith that everything will be okay but how? How is it going to be okay when she is not here with her sister? I know we will find our new normal but what is that going to be? We struggled for so long to have our children and finally found joy and peace. Now, I'm afraid our new normal will be devoid of true peace. I pray this isn't true.

Realization of the week? A real downer of a post this week. I realized we probably won't be bringing both girls home. I went into the room that will be their room and saw their car seats. I lost it. I just can't believe this is happening. Our greatest hope and prayer is that she is born alive and hangs on for her sister's sake. We would be so grateful to have any time with her alive. That is our prayer.

20 weeks...The Week Our Lives Changed Forever

I'm not sure when to begin. I have really lacked documenting this pregnancy and now I regret it which I knew I would eventually would. I haven't had the motivation because I have been so worried from week 12 about these girls. It's hard to take belly shots and post about mundane symptoms when I fear that something is really wrong.

Let me back up...We found out in August we were pregnant after our 4th round of IVF. We were thrilled but I had the typical 1st trimester nerves. We went in for our very first ultrasound at 7 weeks. We saw two little heartbeats but something didn't sit right. Baby A's heartbeat was on the low side of normal. Baby B's was good although not as fast as Sam's was at that stage. I thought I was having boys again. I was not convinced Baby A's would still be beating at our 9 week ultrasound. We returned at 9 weeks and both of their heartbeats were super fast and I was finally a little relieved but still had that early pregnancy anxiety.

Fast forward to 12 weeks when we had our first OB appointment. We knew we would get another ultrasound and were excited to have that sense of relief seeing two heartbeats still. The tech started scanning us and we saw two great heartbeats. I was relieved and thought I could finally start being excited. That feeling quickly ended when the tech was scanning Baby A pretty extensively. She was looking at blood flow in the heart and measured the NT (something that I knew was not a normal thing). I tried not to panic but as we were waiting for her to come back into the room after the scan, my mind was racing. She came back and asked her why she measured the NT. She simply said it was abnormal and the doctor would talk to us about it. My heart sank. In my profession and my obsessive need to know superfluous information about pregnancy and fertility, I knew this meant something might be wrong with our baby. Our doctor came in and started talking about markers for chromosomal abnormalities. My head was spinning. I was desperately trying to hold out some hope that it could be nothing but they wanted to be honest and let us know the odds were still in our favor but not great (about 1 in 5 for Down's Syndrome). If the chromosomes were normal, we may be dealing with a heart issue. We set an appointment to meet with a genetic counselor the next day and she was really great but even more gloomy than our wonderful doctor was. She went over testing options and we opted to not do anything invasive. We had the blood test, MaterniT21, that is over 99% accurate. We felt comfortable with that even though it only tested for the most common chromosome issues. For 7 days we prayed and waited and pondered what our life would be like if we had a child with Down's Syndrome (their most likely guess). I was scared and devastated but after making a trip to the LDS temple, I felt like things were going to be okay. I prayed for peace and comfort for our family. I was in California and Michael was on business in Wisconsin when I got the results and found out that our girls were GIRLS, and they both had typical chromosomes. No Down's, no other Trisomies. Hallelujah! We were told there was still a potential heart issue and that we needed to monitor closely but we were relieved we weren't facing the challenge of having a child with a chromosome issue.

Scan after scan, she was doing okay. They saw nothing at the 16 week ultrasound but her growth was a little behind. I wasn't too concerned. She was actually catching up to her sister. Baby B was 4 days ahead of my due date and baby A was 4 days behind my due date. They don't like to see twins with more than week difference in size. So, her growth was one more thing they needed monitor closely.

It's amazing how fast things can change. At my last ultrasound, I was 19.3 weeks. I was nervous knowing this was the "big ultrasound" where they scan all the anatomy and we could better tell if there was a heart issue. I was also anxious to see if she finally caught up with her sister in growth because that is how she was trending. The tech immediately started scanning and my heart sank. The first measurement came back 17.4 weeks. I couldn't believe she was so small. By the way, you know things are not good when the tech is quiet. We have had a lot of quiet ultrasounds. When things are good they are more than happy to comment on how perfect your baby looks. She moved to the heart and I asked if there were four chambers and she said yes. Something didn't look right to me. She moved to the legs and I could tell something was off but again, didn't know what. She said she was all done and the doctor would be in.

This was the first appointment we had where we didn't see my normal doctor. We saw one of his partners, Dr. Sullivan. She was wonderful too. She got right to the point and told us the things that were concerning. First, her growth. Very concerning that she fell so far behind. The heart didn't look normal to her either but she is not a specialist so she couldn't say what. The baby's right foot looked like it might be a club foot. And finally, the bowel was showing up brighter than normal (called an echogenic bowel), a marker for chromosome issues. Naturally our heads were spinning and we wondered what we were dealing with since we already ruled out the most common abnormalities. Was it something super rare that no one has heard of before or was it nothing at all and "just a heart issue"?

We opted to do the amnio this time. I was a ball of nerves with the small risk associated with it but I knew we needed to know what we were up against. It hurt. I hope I never have to do that again. We were told we would have the preliminary results in 48 hours which put us to Black Friday so maybe not until Monday. I wasn't too anxious about those results since we had already been tested for the disorders that come back initially. Oh man, was I wrong.

Dr. Draper text me on Saturday morning and asked if I could call him. It's never a good sign when your doctor wants to talk to you asap. My heart sank and I got teary. Michael was outside working on Christmas lights. I ran out to get him as I was dialing. When they told us at 12 weeks that it was probably Down's Syndrome I was devastated but after a little while I felt up to the challenge to raise such a special spirit. However, I was relieved that it was not DS when we got the results of our first test. In that moment I called Dr. Draper, I found myself hoping for the thing that I feared the most. I was hoping it was DS. It was not. He told us it was Trisomy 18. He asked me what I knew about Trisomy 18, or Edward's Syndrome. I told him I knew it was "not compatible with life". That's a pretty harsh label, "not compatible with life". I knew that most Trisomy 18 babies did not make it to term and if the did, they only live for hours to days if you are lucky. Every case is so different to so it's hard to know what to expect.

So, for that past few days we have been crying, processing, and praying. Our greatest hope and prayer is that we get to see her alive, even if it's just for a moment. We are in a very unique situation, having another baby to grow as well. If she passes away in utero, I am at greater risk for preterm labor than I already am with twins. I am really hoping to make it to 37 weeks. I really need to bring one baby home with me. I don't think I could bear leaving baby B behind in the NICU. My greatest fear is losing them both. We have no reason to suspect baby B is not completely healthy.

This is something that we never thought we would be faced with. I naively thought we did the hard part. Getting our babies here has been such challenge that it wouldn't be "fair" if we lost one. Now, burying a child is very real to us and we are trying to navigate our way through what lies ahead. I have asked, "why us?" but then I thought, "why not us?". No one has something like this happen to them and thinks, "oh yeah, I see, I had this coming to me". I am trying to sort out my emotions because they can be very confusing at time. So much grief with so much joy and gratitude that I was chosen to be these girls mom and carry this special spirit. I get most emotional that Sam and her sister will never know her in this life. Her sister should have her twin with her. It's not fair. I have so much more to say about how I feel but I will have to save that for another day. For now, I am just trying to enjoy and appreciate everyday we have with her. This has made me want to document like crazy and celebrate all the milestones in this pregnancy.

I love you, baby A. Hopefully we will have a name for you soon so you don't have to keep being referred to as "baby A".

18 weeks...

18 weeks...I popped finally!

16 weeks!

How far along? 18 weeks

Total weight gain? 6lbs. I've been stressing about this. My goal was to gain 8 lbs in the first trimester but between lack of appetite, chasing a one year old around, and that said one year old always wanting to eat all my food, it just hasn't happened. But, we get frequent ultrasounds of these babes and they are growing just fine so no worries.

Sleep? Potty breaks and vivid dreams interrupt my sleep but I'm sleeping well still. I use my Snoogle still and it's the best!

Best moment of the week?  Feeling these babies more and more. I can't wait until I feel them all the time so I can know they are okay. 

Miss anything?  Rest. I took for granted how much I could rest when I was pregnant with Sam. 

Movement? I have been feeling flutters and nudges for about 4 weeks. This week they have turned into little kicks. I still don't feel them all the time but when I lay down at night, it's kick, kick, kick. I think in the next week it will be the real thing and in 2 weeks, Michael will be able to feel. I can sometimes determine who is doing the kicking. Like just now, Baby A kicked and that always makes me feel good since we are little more worried about her. I have been nervous about not feeling them sooner but I read that just because you have two in there doesn't mean you will feel them any sooner. I also was thinking back and felt like I felt Sam earlier but I read back on my blog and it was about now to next week that I really started feeling him.

Food cravings? My appetite in general is different than it was with Sam. I don't really have one and I can only eat a little bit at time. I really have to force myself to eat. My body usually will tell me when it's been too long but that hasn't been the case this last week. I get cravings every now and then though. I pretty much want what anyone else is eating. We were watching Master Chef Jr. (seriously, those kids make me feel like crap when it comes to cooking) and they made Beef Wellington. OMG! I wanted a steak so bad right then. Texas Roadhouse was still open (it was 10:30pm!) and my sweet husband offered to go get me a steak. I almost took him up on that offer and the only reason I didn't is because I knew that I would take two bites and be done. Don't worry though...I ordered take out the next night and got prime rib with creamy horseradish. YUM!

Anything make you queasy or sick? Generally, I have felt good. No morning sickness but get nauseous if I don't eat often. I had my weeks of feeling really BLAH but that's about it. I did wait too long to eat one morning and then Michael wanted a burger for lunch and I got one with onions. Oh man, onions. Not doing those the rest of this pregnancy. I had him pull over and puked on the side of the road on I-215 (but just after grabbing our bag of fries and destroying those).

Labor signs? No way! I'm super nervous about this. My doctor said he really wants me to be aware of preterm labor. It freaks me out because I didn't have ONE contraction with Sam. I have no idea what they feel like! I am terrified I won't recognize them. I had Braxton Hicks with him but just a few. When I went in for my 37 week appointment my doctor said I wasn't even close to being in labor and let me go one more week before the c-section. He said I probably wouldn't have had him until 41 weeks. I'm hoping that works in my favor this time. My goal is 38 weeks. I really want them to be as big and mature as possible. Even 36 week-ers are kind of pain (they are usually not great eaters).

Gender?  GIRL/GIRL (still hasn't really sunk in yet). I keep referring to them as "the girls" and I giggle every time. It feels like I'm playing house or something. We don't have names yet. We have a list of plenty we like, it's just deciding which two we like the best. It's super hard to name two. You would think it would be easier since you get to choose two instead of one but it's hard!

Symptoms? Aside from peeing a couple times at night, not much. I have a lot of growing pains and I am super tired all the time. I try to nap as much as possible since Sam is taking two naps still. Of course I have great husband who really picks up the slack when he gets home. Major back pain that is quite an issue. I don't really know what to do about it. It really hits me at night.

Happy or Moody? Happy. My mood has varied so much with pregnancy. At 18 weeks I still can't get my head around the fact we are having 2 babies! It may sound horrible but I'm not entirely convinced we are bringing home 2 babies. Since 12 weeks we have been told be "cautiously optimistic" or "take it one day at a time" so I don't think I have allowed myself to get too attached yet. I hope that changes quickly. I feel like these girls have been shafted when it comes to the documentation of this pregnancy. I only first took a belly pic two weeks ago and haven't taken one since. I think staying up on my blogging will help be more connected with this pregnancy.

Looking forward to...?  Real movement and finally feeling good about this pregnancy. I'm terrified something is going to happen one or both of them. I feel a little robbed of the joy that comes with pregnancy. I'm really having a great pregnancy and I should be able to enjoy it. I know easy pregnancies don't come by most people so I should be able to relish in it but it's been hard to plan on anything with whispers in our ears that there might be something wrong with Baby A (even though so far she is fine). Deep down I know she will be okay but it's hard.

Realization of the week? No realizations really. I'm looking forward to the moment I realize there are actually two little babies in me! Hasn't quite hit me yet.

Baby Hall Round #2

Here we go again! What a shock! About 14 weeks ago we completed a fresh cycle of IVF. We started in June but postponed the cycle for few reasons for a month so we started in July. Sam wasn't even one yet but we figured it could take a while for this be successful and we wanted them to be closer together since they might only have eachother.

Fast forward 6 weeks and a slightly bumpy cycle and I took a pregnancy test. What a beautiful sight! I really didn't think it worked because I felt NOTHING! I suspected with Sam and even my miscarriage that I was pregnant because I was soooo tired and starving all.the.time and my boobs were sore. I felt nothing although I was completely exhausted all the time anyway with working nights and chasing a busy toddler around. I was truly shocked! I had my blood test 5 days later and the my number 159. I was not satisfied with this of course because I got a postive test so early, I thought it should be higher. It was lower that Sam's was too. I had another blood draw a week later and I was hoping for a very high number since Sam's was quite high. It was 1690 and they wanted it over 1500. I was bummed. I was pregnant but it's hard not to compare (Sam's was in the 6000s). We were secretly hoping for twins but would be relieved if we only had one. After all, Sam would only be about 19-20months. I was sure it was a singleton based on the numbers since typically twin pregnancies have higher HcG levels. Boy was I wrong! I had a few moments where I thought I might be having twins but I brushed them off becaue they were just "feelings". 

My first ultrasound was scheduled for 7 weeks but at 6 weeks I was having disturbing lower back pain. I was upset because I was sure it wasn't a good sign. So, I went to see the doctor to be evaluated. After describing the pain I was assured it musculoskeletal pain from the softening of the ligaments and loosening of the joints caused by the extra progesterone I was on but she did an ultrasound anyway. I was surprised but not surprised when two little sacks popped up on the screen. Michael was not with me at the moment but was at the office. I called him to come in and he immediately knew why. We were happy but it was still so early that we knew anything could happen.

We went for the ultrasound at 7 weeks and we were relieved to see two little, strong heartbeats! Baby As heartbeat was lower than I would have liked but the said everything was fine (although in ultrasound report it said decreased fetal cardiac activity). We still didn't want to allow ourselves to get too excited but couldn't help telling our families. We went back at 9 weeks and if things were good, I would allow myself to get excited. They had very strong heartbeats (no decreased FCA) and we "graduated" for the fertiltiy clinic. It was bittersweet because I don't know if we will do this again so we may not see them again.

We know it will be hard but we feel so blessed to become a family of 5! Whoa!