Coping or Thriving...

The tremendous outpouring of support we have received is still amazing to us. We are reconnecting with old friends, leaning on new friends, and relying on those who love us more and more. Since our diagnosis a week and a half ago, much has occurred. The Friday after we found out, I learned that one of my students died on the 4th. While there is still much up in the air about the circumstances of her death, I am still pissed about it. She was somewhere she should not have been and I am angry that her bubbling personality and willingness to be silly and to be herself will no longer brighten her friend's lives. It was such a reminder though. A reminder to work hard, to love fiercely, and fight like hell to raise our kids and hope, in bad situations, that they are protected...all of them. I am so sorry to her friends and her family and hope for some closure for them soon. In addition to dealing with that loss, people we know were going through some rough family times and I so wanted to be with them so they could lean on us. I know it seems like we should be doing the leaning, and trust that we are completely leaning, like Tower of Pisa leaning, but my heart was aching for our friends and I wanted to help them. So we found ourselves very quickly being moved through the process of dealing with the news about T21. And for now, that's ok. On Monday we had the opportunity to look at Baby Raptor's heart in better detail. This doctor appointment was very stressful for me. It would determine so much about how we could proceed through the second half of our pregnancy and what Baby Raptor would need from the start of his or her life. I stared at the screen for any glimpse of what I could to make sure that Raptor looked ok. We were examined by two fetal cardiologists who mumbled words and acronyms under their breath. I had done enough research to catch about 20% of what they were saying. They sure did get some good looks at the heart though, the one cardiologist kept exclaiming what perfect pictures they were getting of different valves and views of the heart. At the end of it all we were given second best case scenario. Best case scenario would obviously be that nothing was wrong and the heart was perfect. Second best case scenario was that there is a possible hole between the valves of the heart. They could not give this as a gaurantee and could not confirm with several different views and by looking at the blood flow. If it is there, it is very small. If it is there, it won't necessarily fix itself, but it might be inconsequential. And, the best news of all, regardless of it being there or not, we were given the ok to proceed as normal and as planned. They had no intentions of pulling me away from my doctor, my hospital, and my nurse. They simply wanted a follow up with a pediatric cardiologist (and they were very happy that we had already seen Dr. Wolf for Keegan because he is highly respected) after Raptor is born. I could have hugged both of them. I think I asked more than once, "So your opinion and recommendation is to proceed like normal?" It was such a relief and the huge weight wasn't just lifted off my shoulders but catapulted into space. I could proceed like normal. That word means so much to me right now. If Matt and I are fighting and struggling to grasp what normal means for our family and that our third child will redefine normal for us, then proceeding like normal with the pregnancy meant that things were ok. It would have been so hard for me to separate the heart issue from the T21 diagnosis that I would have had difficulty thinking of our baby as normal. Being able to deliver out here meant that Raptor has an extra chromosome and that we are going to have to take care of some stuff, but for now he or she just needs me to do what I do...grow good babies and have the best possible labor and delivery experience I can. Granted, I am still considered high risk. There is a higher chance for placenta failure and intrauterine growth restriction. I will be monitored by the Maternal fetal specialist in conjunction with Dr. Norton and I have already started increasing the frequency of my appointments. There will also be even more frequent appointments as things get closer, but it's still here, where we live, with people we know, and people we love! Please don't misunderstand that I wouldn't have been thankful and grateful for wonderful local hospitals that could have cared for our needs had Raptor needed something more...and he or she very well could...I just am happy for things to be ok right now. After my appointment I went home and slept better in two hours than I had in the prior 8.5 weeks! The cardiologist also gave me a heart attack when they decided to schedule a follow up for me and not tell me it was just a routine follow up and not a we think we see something else and want you to come in follow up. So I will be able to look at Raptor's heart again before he or she comes and we will be able to see this possible hole a little better since he or she will have grown substantially in the next month. To add to our move along because this is life process, the next day our house fell to a horrible, mean, and ferocious stomach bug. Poor Mattie...it was not the best birthday present he could have asked for...but he did get to take three days off work to recover and I think he needed the rest bad. In fact, there were times I needed to make sure he was breathing... We are all recovered now and glad, but astounded that little kids (at least our girls) aren't hit with sickness quite the way we are. As far as how we are really doing...who knows... I think we are doing pretty well. I am glad we know now, it becomes easier to say that "our baby has Down syndrome" each time we say it, and we can sort of start drinking from the cup of information in front of us instead of gulping it all in at once if we hadn't found out until delivery. We are amazed by the fact that Raptor looks 100% completely and entirely perfect. With the exception of the possible hole in the heart there are now no markers seen on this baby for Down syndrome. In fact, the ultrasound tech at my last Maternal fetal specialist appointment asked me after scanning baby for over 30 minutes why we were seeing the specialist. When I told her that Raptor was diagnosed with T21, she apologized, clamored that she hadn't looked at her chart, opened up the information from the scan and said, "I never would have known that looking at your baby." And she looks at situations like ours pretty regularly. Dr. Norton assures us that this is a great sign, that Raptor is healthy, and that he or she just has a little extra something. We are just thankful for Dr. Norton's instincts. We always said we would want to know ahead of time (I still could not imagine this news coming in a delivery room) and if she hadn't trusted her instincts and asked for a second ultrasound that day then we probably would never have known. Everything since then has been perfect. In coping, I told Matt that I was going to get him a shirt that said "Boo-yah, my kid has more chromosomes than yours"...I think I still might...and a bumper sticker that says "Your kid may have straight A's, but mine has 47 chromosomes". I am not trying to completely shrug away the fact that we have a lot of unknowns in front of us, but I think it's pretty funny. We have talked about all that Baby Raptor will do...all of the normal baby stuff (maybe later, maybe not), go to school, play with friends and siblings, grow up, and if we have anything to say about, reach a lot of potential. I think the hardest part is being able to pinpoint exactly where some of the places that Raptor will struggle. It's like being able to tell the future and we are very much sit back and let's see where our kids take us. But struggle can be good. For the past few months, Keegan has struggled with climbing onto the couch. She sees us plop down with ease, she sees MacKenzie get up and done at her own free will, often carrying several things, and she wants to be able to join us on her terms as well. For months we have coached her, cheered her on, supported her, and helped her in this learning process. She hated not being able to do it on her own...she struggled. Now, months later, she is easily climbing up on many things and is starting to master pulling herself up on anything. She is still struggling, but when she succeeds, she is so happy with herself. She is proud. And so are we. Baby Raptor will struggle...but that's ok. We will coach him or her, cheer on him or her, support him or her, and help him or her throughout every learning process. So are we coping...definitely...and I actually think we are getting pretty close to thriving. This is already becoming just a part of who we are and although we never thought we would be the "1", this is fact and we are going to do our best with it.