You can only be so strong...

Well the good news is that there haven't been any changes since I was admitted to labor and delivery on Tuesday. I also found out today that after 34 weeks, they will no longer attempt to stop my labor. That means no more insane doses of those awful drugs. The bad news is that while I have been here thinking my weeks start over every Friday, my OB's file states they start over every Monday.. Only a few days difference right? 4 days seems like an eternity when you are this pregnant!! lol

I met with the head of the IHC NICU today.  She was actually a lot nicer in person than what she seemed like over the phone. And that is even with her having been at the hospital for like 32 hours so far! Poor, poor woman. I was very grateful that she was willing to take some time and meet with me. We went over my birth plan and talked in depth about what different measures were available, and where I wanted to draw the line with Adrian. She helped walk me through what it would be like for the delivery, and we even talked about what to expect with Audrina. The nice thing about IHC is they have delivery rooms that are connected to the NICU. They actually have a window that they will simply pass the babies through once they are born. On the other side they are able to have all their tools and machines, as well as their full staff in one place. While it will still be chaotic, there will be some sense of organization versus having tons of doctors running around the delivery room. She has offered to draft up a letter that details what we talked about today and our wishes for Adrian's care. This way no matter who is working, everyone should be on the same page. Also, she plans to call and talk with my OB to make sure she understands what we talked about today as well. I think I have finally talked to everyone that will or could be involved in the birth of these twins, so now we wait.

You would think with all this planning and research that eventually you would find yourself at a point that things are ok. Yet some days I feel like the more information I have, the harder the decisions become, and the more lost I feel. I prepare myself for these meetings and for the most part I do ok, but there is always a point where I just break down. There is always more information to learn and more decisions to be made. Hard decisions. Decisions no parent should ever have to make. And just when I think I have figured it all out and have come to terms with those decisions, something else comes along- a little more information to consider, another decision I have to make. I always joke with people that making a pregnant woman go through all this is just wrong. The situation is already undeniably hard, but you throw in those pregnancy hormones and one is likely to lose their mind. At some point I think you have to just trust that you have done all you can and let the future unfold. You can plan yourself to death, but the reality is there is still so many "unknowns". You have to have faith that you have done all you can and that the decisions you have made were the right ones. If not you most certainly will go crazy. And I don't mean the "ha ha" crazy... I mean the "lock you up and throw away the key" crazy. I think what worries me the most are the what if's. There really is no way to truly plan for the possible and likely death of your child. At some point you have to let go and trust that you have done all you can. And let me tell you that is one of the hardest things I have ever had to do.

Nearing the end...

It's been a while since I have updated and I apologize. Between Christmas, family visiting, and what seems like never ending dr.'s appointments, I am surprised I have time to brush my teeth some days. Hahah I hope everyone had an awesome holiday (which ever one you celebrate or don't celebrate) and have an amazing new years!!

So since the last time I posted I have met with Dr. Carey, taken Amden to get Santa pictures, set up a meeting with the head neonatologist at IHC, and have spent some time in labor and delivery. Where should I start??

This was the first year that Amden had a grasp of Christmas and who Santa is. We watched Frosty and Rudolph pretty much non stop for about 3 weeks, and I must say I am not heart broken that Santa took the movies back till next year ;) We took him to sit on santa's lap at the mall and he actually smiled for his picture! I will upload that picture once KC scans it for me. He asked Santa for a big truck, a train, books and a bus. Since Santa realized this was the last time Amden would be the only child on christmas, Santa was very generous and made sure to bring Amden everything he asked for. Amden responded by telling me that "Santa is nice momma". It made it all worth it! We don't want our kids to think they get a ton of stuff every year from Santa, but it's hard with all the family we have. Even if KC and I only buy him 1 gift from us, he gets quite a few from all the other family members. We will have to work on scaling that down in years to come. For now, we just make sure to send some of the presents home with them so that Amden has toys to play with when he visits them. Oh and did I mention he let us sleep in till 8am on Christmas morning?!? I know that won't last much longer so I am grateful for at least one year haha

  Last week I met with Dr. John Carey. He is a geneticist at Primarys and is an advocate and head medical adviser for SOFT (support organization for trisomy). It was nice to get his perspective on what to expect with Adrian, and his opinion of our choices for his  birth plan. He was very honest with me and so caring. It truly was one of the best meetings I have had with any type of doctor during this journey (outside of my OB). He explained that there really is no way to know how Adrian will be affected by his condition. We can only wait and see. But there are 3 times when we can learn a lot- during his birth and how he copes, once he is born and is in the room with us (does he have to be resuscitated, does he need oxygen etc) and once he is in the NICU. He said we really will know a lot by the end of the first week. He offered to set up a meeting with the NICU staff at IHC, and said that he believes our plan to let Adrian sort of guide us in his care is perfect. No two trisomy children are the same, and there is such a large spectrum of issues, that we truly just have to wait and see.

At this point I feel like I have truly done all I can as a parent. I have done a TON of research from families with children who are living with T18, to parents of angels. I have met with pediatric surgeons, NICU nurses, neonatologists and geneticists. I honestly feel like at this point there is nothing more I can do for Adrian. It's sort of up to him how things will go from here. When he is born, we have decided to avoid a c-section, even if he doesn't tolerate the birth too well. This decision was not easy but one made with Audrina in mind as well. It's hard enough to care to a newborn, let alone 2, and one who will have major health issues. I couldn't imagine trying to do that while recovering from surgery. Also, I have had 2 pretty major surgeries in the last 2 years and I don't want to go through that again if I can avoid it. We will provide Adrian enough intervention to get him stable and hopefully breathing on his own. He has a few things stacked against him which might make this hard. 1 - he is a boy and boys do not fair as well as girls with T18. 2- He will be preemie. There is a good chance he will be born sometime between 34-36 weeks. Dr. Carey explained that anything earlier than 36 weeks really plays against Adrian as he will now be dealing with other issues than just the T18. 3- he has an omphalocele. Since we won't know the extent of it until he is born, this could also cause him issues. In some cases, an omphalocele can cause a child's lungs to not develop properly.

Since we have not done the genetic testing yet, I would like to get Adrian stable enough to be able to survive long enough to get his results- which will take about 2-3 days. This could mean more invasive measures than I really wanted to do, but I don't want to have any regrets (wishful thinking). My hope is that he will be able to do just fine with out much intervention in the first few days. If it appears he is really struggling and just not doing well, than we have decided to enjoy our time with him without the tubes and machines, regardless if he have gotten the test results back yet. This was not an easy decision but one that we as a family have decided is the best choice for us. I honestly feel that Adrian will let us know which route to go, and when it's too much. If he continues to do well, we will have additional decisions to make such as having the omphalocele surgery done, which would require transferring him to Primary's.  We would also then need to setup hospice care for when we bring him home. For now, we will take it one day at a time.

Thursday I will be meeting with the head neonatologist at IHC (her schedule permitting of course). She has already expressed her concern with me delivering at IHC instead of the University but we (as a family) have weighed out that decision, and decided for now it is the best choice for us. We will be going over my birth plan and what I expect of them during the birth of the twins. I am sure I will also be explaining my reasoning behind my decisions, and all the research I have done up to that point. Luckily Dr. Carey knows her and worked with her for a long time, so I have that on my side. If something happens before I am able to meet with her, she has told me she will send down the team to meet with me before I give birth and even if we don't have time for that, my file at this time states full intervention for both babies.

Yesterday I went in for my non stress test. Apparently I forgot to take my anti contraction meds (unconscious choice? Maybe). While I was hooked up for monitoring, I was having contractions pretty close together. At one point I think I was having them a couple minutes apart. They weren't painful, just annoying, but the nurse decided to send me down to labor and delivery- my favorite place... NOT. I explained to them that I am pretty sure I had just forgotten to take my pills and after checking me, blood and urine tests etc, they decided to give me some meds. A LOT of meds. I had to take an 8 hour dose of nifedipine over the course of an hour! I felt like I had been run over by a truck. It was awful, but  they were able to get my contractions calmed to uterine irritability and let me go after about 3 hours. I am now 3cm and 80% effaced. Slow and steady seems to be the name of the game. I must say I was surprised that they are still stopping labor at this point, but I can understand since I am not quite 34 weeks yet. Miserable- yes.. but apparently not ready to have these babies. I plan to talk with my OB on Thursday to find out their plan and when they will stop trying to stop labor. I really am ready to have these babies. Even with the meds I am still having tons of contractions, and by the end of the day I just hurt. I guess I should just be grateful I have made it this far, and continue to be thankful for any time I am given to let them bake longer.

So that's where we are. As the time gets closer I will be better about updating you on what is going on! I know I said in the beginning that these blogs would get shorter but apparently I was wrong haha!

Well just kidding....

Went in for my amnio today and returned home 2.5 hours later without having it done. Some days are such a waste haha

I was a little concerned from the beginning due to my appointment on Monday, and how "awesome" it went. If you aren't sure what I am talking about read the post before this one. When the ultrasound tech came in, she confirmed I was there to do the genetic testing amnio and that is when I corrected her. I wasn't there just to do the genetic testing. To be honest, as far as I was concerned, the genetic testing wasn't really needed. Everyone already believes all it would do is confirm what we already believe- that Adrian has trisomy 18. I was there to have some of the fluid reduced since he has more than double that of his sister's, and we believe it is causing all the preterm labor issues.

Then the tech did an ultrasound to check on the babies, their position, and their fluid levels. When all was said and done, she had the wrong name pulled up. So she did it again. Another reason to make me nervous. hahah The doctor finally came in and proceeded to explain that she was a little weary of doing the amnio at this point just to reduce the fluid. Apparently they would have to use a bigger than normal needle, and the chances of causing major issues is more so than with a normal amnio. To make matters worse, the fluid they would reduce would be back in about 2 days, only providing me with a couple days of relief. I asked her if she would talk to my doctor about all that and let me know what they decide.

She came back and explained that after talking to my doctor and a few of her colleagues, they all agreed that the risks outweighed any benefit of doing the fluid reduction. And since I didn't feel the genetic amnio would give us any more information than we already had, we decided against the procedure all together.

So for now I will continue on, as I have been, and we will hope to keep these babies in till at least the 30th without reducing any fluid. My next appointments are on Thursday and Friday so I will update after my surgery consult at Primary Children's Hospital on Friday to let you all know where we are going to be delivering.

Sometimes I wonder...

My maternal fetal medicine clinic is in the same hospital as my OB and where I planned to deliver. It makes it easy since I can usually plan my appointments to be on the same day, and only end up at the hospital a few times a week. Unfortunately there are several doctors in this office, and for whatever reason I never actually hooked up with one specific doctor. Because of this, I typically see a new doctor every time I go in. At first this was AWFUL! Every time I went in, they would talk about the fatal diagnosis and what it meant for my baby etc etc. There were a LOT of tears in the beginning of my pregnancy. But as time went on, most of the doctors had seen me at least once and understood that I was pretty smart, and that they didn't need to go through the details every time I came in. I started seeing repeats and it wasn't so bad. Until today.

I don't know if this doctor was new or what, but it was like she had no idea what my history was or why I was there. She proceeded to explain that it appeared that baby B (Adrian) had a lot of fluid, and was measuring behind but was still within the normal ranges. Really? NO WAY! Too much fluid? I had no idea! (insert eye rolls here) I explained that we had talked about doing an amnio to reduce some of the fluid, and asked if she knew when they planned to do it. She responded that they could do it any time. In fact they could do it right then if I wanted them to, or I could just have my OB schedule one. AHHHHHHHHHHHH I wanted to scream.  Instead I politely explained that I was there by myself so today would not work, and that my OB shouldn't really need to schedule it since this was something we had been planning on doing since 11 weeks. She walked me to the front to get one scheduled and that was the end of my appointment.

I scheduled my amnio for tomorrow at 2pm so that KC could drive me to the appointment. I knew from my own research, that I really shouldn't plan to drive after or do much of anything for 48 hours after the amnio. They didn't give me any info. Nothing on how to prepare or what to expect, nothing. It's days like today that I wish I could switch MFM offices to one that maybe cared a bit more about me and my babies, but I am already 31 weeks and we sort of expect these babies to be born in the next 3-4 weeks. I called my OB and she did my steroid shot booster in case the amnio causes me to go into labor, even though she mentioned at my last appointment that MFM should be able to do it if they schedule me before my next appointment with her. It just all seems like some big joke lol

I have set up a pediatric surgery consult for Adrian in regards to his omphalocele and I have that on Friday. This should let me know if I can have a vaginal birth or not, and what the process would entail to have his omphalocele fixed should he survive after birth.

Adrian measured in at about 29weeks 5 days and 2 pounds 15 ounces (almost 3 pounds!)

Audrina measured in at 31 weeks 5 days and 4 pounds.

Wish me luck tomorrow and I will update as the week progresses and I make it through the 10,000 appointments I have this week.

A Glimmer of Hope

Well today provided me with a glimmer of hope. Although small, it is still a glimmer, and when you travel this path, you will take whatever hope you can find.

I had a fetal echo cardiogram done on my babies today. This was something I had asked my maternal fetal medicine (MFM) team for and was denied. They explained that it wouldn't change the fact that Adrian would not live long so there was really no point in doing one. Nice huh? I went along with that decision for quite some time until I finally talked to my OB about possibly having one done. While she understood that decision that MFM made, she explained to me that I was Adrian's mother, and ultimately it was my decision on what tests I wanted to have done. She called that day and got me scheduled for one. Have I mentioned recently how awesome my OB is?

At my last ultrasound MFM thought they had seen not only a VSD (hole between the top and bottom left ventricle) but additional defects that meant Adrian would not get enough oxygen. It was a blow because we were really hoping that all we were looking at was the VSD. Additional heart defects would not do well for Adrian, and since he was going to be born small already, he really won't be able to endure much when it comes to surgeries. So I went into this echo hoping for good news but expecting the worse. It seems that when you are dealing with a child who's probable diagnosis is "fatal", you learn to expect the worse and hope for the best in most situations. Overall my experience was great. The tech and the doctor were so friendly and understanding, and never once made me feel like I was wasting their time. Audrina's heart looked great and when the doctor came in to take a look around, she forgot to change the label from baby A to baby B. Now you are probably wondering why that matters.. Well when the tech caught it, the doctor said, "well its good when you might get the hearts mixed up because there isn't much difference to tell them apart." I immediately got a smile on my face! I don't think I will ever forget her uttering those words! She also asked me if I was planning to deliver at the University Hospital or IHC, and I told her it really depended on the findings today. This is when she told me, "well I don't see any reason you would need to deliver here." Again, another smile. I don't get a lot of smiles at doctors appointments these days and here I am with 2 in less than 10 minutes!!!

After she finished looking around, we met in a small room to go over the diagnosis. She explained to me how a normal heart works. She went through the changes the heart goes through from when the baby is in utero and then when it is born.we had suspected. She explained that the ventricles on She then explained about the VSD that we had been previously aware of, or at least the left side of the heart help pump blood to the body. When there is a hole between the upper and lower chamber, some blood just cycles back into the ventricle instead of going out into the body. When this happens, it causes the heart to have to work harder to compensate for the missing blood and lower pressure. In Adrian's case, it appears there might be a small hole. She said it was really hard to determine size and in some pictures it looked small, in other pictures it appeared to not even be there, and in others it appeared that it may be a moderate size hole. In some cases, these holes will close all on their own. At 31 weeks, the chance of that is pretty slim but that isn't necessarily bad news. If the hole is surrounded by enough muscle, there is a chance that blood won't even be able to pass through the hole, thus never causing an issue. If the hole is big enough, most of the time surgery won't be required until the baby is several months old and starts showing symptoms of cardiac arrest. They usually just wait till the child starts showing symptoms before they worry about doing the surgery. Ultimately an ultrasound after birth will give us a more detailed look at the size of the hole and if it is passing blood or not. At this time it's not something to be overly concerned about.  Such great news.

Adrian's heart was one of my biggest concerns. Children with T18 experience a wide range of heart problems and a lot of times, these problems are what cause the child to pass. As we begin to make plans for the birth of these babies, it was really important to me to have as many facts as I could, to ensure I was making the best decision for my children and our family.  Now this does not mean that Adrian will be without problems, but what this means is that he may need very little intervention at birth to keep him living. This means we may have more time with him than we thought, and has pushed me to start making plans not only for his possible death, but for his possible life as well. And of course there are still no guarantees, but maybe this lil guy will surprise all of us yet.

A quick update on me.. I have dilated a little more since last week and I am now at 2+cm. The good news is that my cervix is still high, which is good and we hope that this slow dilation continues. I will take 1/2cm a week if I have to! I am 31 weeks today and we are hoping for at least 3 more weeks! I will get my booster steroid shots next week. They help the development of the baby's lungs and are good for about 2 -6 weeks depending on who you ask. I have a growth ultrasound on Monday and will probably be scheduling an amnio then. This will help drain off some of Adrian's fluid and possibly help slow down my preterm labor issues! It would be nice to slow down the contractions. Some days my stomach just aches from all the action. There is of course a chance that the amnio could cause me to go into labor, but my OB and I have decided the benefit outweighs the ris,k and honestly, I am looking forward to some possible relief! You try measuring almost 45 weeks when you are only 31 weeks and let me know how ya feel! Haha Ya that would be the equivalent of going 5 weeks over your due date and it's not fun!

So we are still at a "wait and see" standstill but I feel as though I am starting to get some more answers and more possible outcomes than I was  before. I will be meeting with a pediatric surgeon for a consult on Adrian's omphalocele to talk about what the surgery entail,s and if it's something Adrian may be able to endure after birth. This may also determine if I am going to have to have a csection. We are still trying to avoid it if possible since I will be caring for two newborns, but it may be necessary if the surgeon doesn't think Adrian will do well.
I will be sure to update on their growth after my ultrasound on Monday! I hope you all have a wonderful weekend!

No Babies!! Not Yet!!

Well today marks 30 weeks!! YAYAY. Such a great feeling. With every additional week I get, the stronger and bigger the babies get and the less NICU time we will have. Right now my goal truly is to make it through Christmas and we really ARE NOT ready to let these babies make their entrance just yet. The babies on the other hand, well they sort of have their own plans.

So yesterday I had my checkup with my OB. I have been having some contractions, more than usual, but they haven't been consistent or really painful. In fact they really are just more annoying than anything. Unfortunately it appears they are working better than the doctors thought. I am now dilated to 2 almost 3cm. Originally when my doctor checked me, both babies were head down and Audrina was at either a -3 or -2 station. This is the first time her head has truly been engaged as if she would be making her escape at any moment.  These results landed me in labor and delivery for a few hours. Let me tell you what a JOY that it is. LOL My good phone was dead so I had to resort to playing bejeweled on my really old phone. Needless to say the time went by really slowly.

After 2 hours my OB came back to check on me again. My uterus was being very irritable (wonder who it gets that from?) but no real contractions.. well at least none they were worried about. I didn't dilate any more over the course of the 2 hours and Audrina's lil head floated back up so we were no longer engaged and ready to go. This was great news. All my tests came back negative which meant we had no idea why I was contracting so much (it wasn't due to any infections) and my fetal fibernectin test was also negative which means there is about a 90% chance I WON'T go into labor in the next two weeks. This all meant I got to go home!!! WOOO HOOOO

I am now on procardia which is a stronger version of what I was taking before to stop the contractions. I also have the nifedipine to take if I have "break through" contractions, even while on the stronger meds. It also looks like I am back to weekly appointments with the OB, at least for now, and I am on STRICT bedrest. I guess that means I can ride those cool automatic wheel chairs at the grocery store right? Hahah

My mother in law and husband are going to finish painting the nursery this weekend. Who would have thought that a room THAT SMALL would take us so freaking long to finish. I will never do red again, but for now I keep reminding myself how cute it will be when it is all done. My uncle is driving up this weekend to help me entertain Amden while KC is busy in the nursery and I still have plenty of homework to keep my busy for the next few weeks. I do not want to end up on hospital bedrest so it really is time for me to start listening to the doctors. My 2 year old is so excited for christmas, and I would truly hate to miss it because of my stubbornness.

Last time we had a scare like this was about 5 weeks ago. No changes in 5 weeks is actually pretty good! In fact, if I can continue to repeat that pattern, well I will be pregnant for almost ever! haha

The Newfound Joys of Parenting

 When you aren't a parent, you find yourself snickering to yourself when you see new parents posting about their children's bowel movements.  You truly do not understand what would bring a person to want to post about that stuff, and why would you ever think that other people would want to hear about it. LOL!! Well I have become one of those people so if you don't want to read about it, skip down about two paragraphs haha

We decided we were not going to "potty train" Amden.. especially with the upcoming births of his brother and sister. He has already become extra clingy and even more so a mamma's boy (if that is even possible) as he sees my stomach grow and the nursery being worked on. He has done pretty good with all the changes. He knows that mamma goes to the doctor to see the babies and that they are in my tummy. He knows that we are turning the study into the babies room and that the little clothes and new blankets are for them. He has even found a few of his toys that we have tagged as "baby's toys" and he will come and set them on my belly. LOL! I am very proud of him so far.

Well we bought a potty chair for Amden several months ago. I think it was actually almost a year ago. We let him sit on it and would read him stories etc. He would use it occasionally when he was younger and then went through a HUGE phase where he didn't even want to be naked. I know- CRAZY! What lil boy doesn't like to run around the house naked? It was even a struggle to get him to take a bath. It was very odd to say the least. The last few weeks he has really taken off though. The other day he used the potty 4 times and the following morning he even went #2! He ALWAYS uses it before bed at night and the last few days it has become much easier. Before it would take him up to 15 minutes to go and the last few nights he goes right away. And he gets so excited and yells  "I DID IT!!!" and claps his hands and dances around lol. We still aren't technically potty training him but we are definitely not going to discourage this new found joy of his haha. I think I am going to make him a potty board where he can put stickers every time he uses it. I am hoping this will help encourage him to use the potty at school and at grandma's since he does love his stickers. haha

Had an ultrasound yesterday to check on the growth of the babies. It had been almost 2.5 weeks since my last one. Audrina weighed in at 2 pounds 13 ounces and Adrian weighed in at 1 pound 14 ounces. He has fallen to a full pound behind his sister but he put on 10 ounces in just over 2 weeks. That was great news! Unfortunately they did think they may have found something else wrong with his heart but I will wait until the echo before going into detail on that, so I am sure to fully understand what it means. They also saw a little extra fluid around one of his kidneys. Of course all these things are typical of a T-18 baby, but the more problems they find, the less of a chance he will have once he is born. I was really hoping we were just looking at a small VSD but unfortunately that doesn't appear to be the case. Either way they are both growing very well and Adrian even turned head down for the first time this pregnancy! Since he has sooo much fluid, that could change at any moment. He does flip around a lot, but it was the first time we have seen him in that position so far. The non stress tests continue to go really well and I keep getting comments on how well they are doing for how young they are. This is always very comforting.

Now that I am in my 3rd trimester things are starting to move fast! I have to get prepared to do my amnio in a few weeks (and hope and pray it goes well and doesn't put me into labor!) and we still need to finish the dang nursery. LOL! I finally bought a sewing machine so that I could start working on all these projects I keep signing myself up for, and I have bought a TON of memorabilia stuff for Adrian's birth. I have a bunch of 3D mold kits, hand/foot print kits, different color inks etc so that everyone in the family that wants something will have one they can take home.  KC's mom is helping us with the funeral and burial planning which is a HUGE help. We have decided to purchase a few family plots so that we don't have to worry about who he will be buried with. We decided on the Redwood Memorial location which is beautiful and close to home. Of  course we hope we don't have to use it for quite some time, but I am glad to know we won't have to worry about it right after he is born if we do.

At this time I am still hoping to make it to at least 34 weeks which is December 30th.  I would love it if they would stick around in there till even 36 weeks but with all of Adrian's extra fluid, I know that that is mostly wishful thinking. I am hoping that we will be able to pull out enough fluid during the amnio to give them a better chance at baking longer, but the amnio also runs the risk of starting labor or even causing my water to break. I guess everything has it's risks, sometimes you have to decide which risk is the lesser of the evils.

Celebrate the Small Victories!!!

It's crazy to think that about a month ago we were worried that these babies would already be here by now! Today we reach a HUGE milestone!! The 28 week marks 90% viability with little to no brain damage should the babies decide to make their entrance! It also marks the start of the 3rd and final trimester. Hooray!

Today I am celebrating the small victories! The non stress test I took this morning looked great and I was able to get MFM to move my growth check ultrasound up from December 6th to next monday!! That is a difference of 3 weeks! I was stressing a bit when the doctor requested me back in 3 weeks but the front desk lady couldn't get me in for almost 6! When you are pregnant with twins and one of them a possible T-18 baby, you don't want to take many chances! My appointment with my OB was all good news too.  There have been no additional cervical changes since my last check 2 weeks ago!! For now it appears they are going to stay put and continue to bake which is such a great feeling.

And the best news of all--

My OB was able to get me scheduled for a fetal echo for Adrian! I have been asking the perinatologists to schedule this for me and they just kept telling me it's not necessary since it won't change Adrian's diagnosis. I explained this to my OB and she understood why they would say that, but told me ultimately it should be my decision. She also reminded me that regardless of his diagnosis, it is also completely my decision when it comes to the care of Adrian once he is born. If we want to do comfort care with a few interventions like oxygen, food etc and see how it goes- that is our choice. If we want to have them do everything possible to keep him alive- that is also our choice. The diagnosis shouldn't matter. It's always nice to have a few people on your side when you are given such a hard prognosis. I had no idea she set up the appointment for the fetal echo until I talked with her nurse a few hours later, about trying to set up an appointment with Dr. John Carey. It was an amazing and exciting surprise. I am one that likes to be fully educated so that when I am making decisions, decisions that involve my child, I can feel somewhat confident that I did what was best. Knowing how his heart is working or issues he may have, is a HUGE deciding factor on how he will do once he is born- medical intervention or not.

My OB did try to get me an appointment with Dr. Carey but unfortunately it wasn't as easy. Dr. Carey is a geneticist at the U of U and one of the founders of SOFT (Support Organization For Trisomy). I was hoping to pick his brain about T-18 and possible outcomes for Adrian. Unfortunately he is a busy man and the first appointment I could get was in April. Obviously won't work LOL but at least we tried!

I am thankful to all the Trisomy 18 mommies I have met so far along the way. They have been a tremendous help and support through this crazy time. Thank you for all you guys do!

What an amazing gift...

Last night we were given an amazing gift of being able to spend some time with Adrian and Audrina via 3d/4d ultrasound by SustainingGrace.Org. They are an amazing couple who recently lost their daughter to the same syndrome that they believe Adrian has. They started an organization and have since been paying for families across the world to have these types of ultrasounds done so that the families can spend some time with their lil ones during their short time together.

The main focus was on Adrian and he was being extremely cooperative, so we were able to get a TON of pictures of him. We got to see him smile, yawn and play with his hands (which he did a lot lol). Our technician was wonderful and took over 140 pictures for us. We also got a video which is nice because you can watch them move around. I am very grateful for SustainingGrace.Org providing us with this opportunity and we will definitely cherish these memories forever..