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!