Wednesday, July 25, 2012

Raptor picture

In case some of you haven't seen this beautiful profile...he or she is perfect...

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 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.

Sunday, July 15, 2012


In the midst of all the worrying and testing for Baby Raptor, Matt and I had a very small window of opportunity where I was done teaching, he was off work, and his summer semester had not started yet. Knowing that we couldn't get the girls that far away because we only had a couple of days, we decided to take a mini vacation down to Galveston. We were glad to get out of the house and change our pace a bit, but given the opportunity again we would go somewhere with more than one room so the girls could get a decent nap and a place where we could either relax by a pool or at a decent beach. MacKenzie is the best traveler. I think she may be even better at it than Matt or I. Granted, she was rapidly dividing her cells and forming into life when Matt and I went on our big European trip so maybe it is imprinted on the very essence of her being. And she did go to New York once inside me and once when she was about 9 months she has this down pat. She is flexible with resting, is willing to go and see as much as she can, and smiled and said "Hi" to as many people as she could. a good traveler. The girl spent most of the vacation crying or playing a game Matt and I have affectionately termed as "up down". It is a very easy game to understand, if she is up, she wants down, if she is down, she wants up. And we played this many, many, many hours of the trip. It was well worth it though.

We splurged on a two day pass at Moody Gardens, knowing that we aren't the Galveston beach kind of people and thoroughly enjoyed it. The rainforest pyramid was ok, but it was very similar to the butterfly pyramid here in Houston. MacKenzie and Matt got to enjoy an imax movie and we spent a few hours playing at the small water park attached to Moody Gardens. Our absolute favorite part (and one we could spend hours at) was the aquarium pyramid. We went there both days and delighted in showing the girls the huge array of animals there. The girls loved it all, but especially loved the seals. The seal tank covers several "levels" so you can see them swimming around. And thankfully they have conditioned the seals to swim by the windows as much as possible. The girls shrieked and squealed with delight to watch them swimming and dancing in the water. They were giggling and laughing so much that other visitors would stop to watch MacKenzie and Keegan for a few minutes before moving on. Matt and I probably could have taken a girl in each of our laps and entertained them for at least an hour before wanting or needing to move to the next animal. If we went back, we would just buy the admission to that pyramid and spend our whole day there!

In all fairness, Keegan did get a huge kick out of the ocean. One night before dinner we walked over to the ocean so both girls could walk around on the beach and tickle their toes in the water. MacKenzie, in true Mac fashion, hated it. She couldn't stand that her feet were dirty (despite my attempts to explain to her that sandals were meant for the sand), she was afraid of the ocean water, didn't like the seaweed everywhere, and wanted to leave as soon as possible. Keegan on the other hand, loved the ocean. That child would have dove in head first and swam away to be a mermaid if we had let her. Showing absolutely no fear, she ran as fast as her chubby legs would carry her towards the waves, plopped in, and started to splash and crawl around. We couldn't keep her out of the water without picking her up (which carrying around a muddy and ocean water baby was not what we had planned on...oops) and tearing her away from her beloved ocean. I am so glad that she got to enjoy a small part of our trip. MacKenzie is so like me...she is so hesitant, so fearful of the unknown, fearful of not doing something perfectly that she misses out on experiences, and the kicker...she regrets it after. When talking to her that night, you could tell that she wistfully recalled not getting into the ocean and wishes that she had. I hope I can encourage her to try these things more often.

A day at the waterpark 

The good traveler, happy as can be 

At the aquarium  

Our little mermaid making a run for it 

I promise, this was how she looked for most of the weekend

Watching the seals

All in all, it was a great mini vacation and we very much needed the time together as a family.

Sisters again

I know I have said it before, but I am so glad we have sisters. They are really starting to love on and play with one another. Yes, sometimes that playing looks a lot like wrestling and sounds like a cat getting skinned, but I assure you that it is all part of the sisterly bond forming! Recently I got Keegan up from her nap before MacKenzie and while Keegan and I were snuggling we could hear MacKenzie playing on the monitor. Keegan perked up, looked around, and starting saying "Tenzie, Tenzie". I asked if she wanted to go get her sister and she practically leapt out of my lap and ran for the stairs shouting "Tenzie, Tenzie". At this point MacKenzie could hear us and started yelling, "Keegan, Keegan". It made my heart melt that they so wanted to be together that they were looking for one another and look forward to being together.

Small update on Keegan Joy

Keegan is the funniest little child I have ever met. One minute she is happy, giggling, and snuggling everyone and everything like crazy and the next minute she is screeching like a wild banshee, completely devastated at who knows what, and is throwing herself on the ground as if her heart has been broken and may not ever heal. I love her passion and that complete unbridled ability to simply feel! But it sometimes breaks my heart that she is so sad about things and I cannot necessarily fix it. She has been trying new things and has turned into quite a climber. She is very happy now that she can climb onto most couches and onto MacKenzie's bed and was trying to climb out of her pack and play (very well I might add) the other day. She only likes to read books when she is sleepy and they really need to have lots of animals and colors to keep her attention. I think she mostly appreciates sitting in someone's lap and being close to them. She is still sucking on her two fingers (middle and ring) and Matt and I wonder if that is why we don't feel like she talks as much as MacKenzie did at her age. We know she can, in fact, today she said, clear as day, "Where is my puppy?", but we don't think she is quite as verbal as Mac. She does say a lot though and is super pleased when people understand what she is saying or referring to. The other day she was sitting in Matt's lap and grabbed his cell phone and held it up to her ear. She then pointed to my phone, furrowed her brow, and said something that sounded like "get it". I took a wild guess and grabbed my phone holding it up to my ear and said hello. She got the biggest smile on her face and we had a nice little conversation that way!

Keegan's favorite food is hands down anything that involves tomatoes. She likes most other foods and will try anything that we are eating, but she is crazy for tomatoes and tomato sauce. She is doing well mastering utensils, but we often have to stab her food on her fork for her and then she will put it in her mouth. She can also get very picky about what she wants her next bite to be and if you stab the wrong food item she will shake her head wildly, screech, take it off the fork, then point at what she actually wanted! She likes to wipe her own mouth and hands after meal time and loves participating in bath time by helping Daddy wash her and her sister. She is still taking a huge afternoon nap (1 until 5 and sometimes 6), but she has always been a sleepy head. She is a sturdy little walker and loves to be chased and to chase after her sister or anyone who will play with her. If she cannot find someone to play with her, she is also perfectly content to collect as many stuffed animals and babies to be her little brood and will rock, pet, and feed them with toy bottles, her own sippy cup, or actual snacks.

Our little imp 

 Yes, she is drinking the tomato sauce

No words for capturing this beauty 

She only barely tolerated a handful of pics at Matt's parents house 

A doll and a puppy! What a catch!

I love my little snuggle bug. She gives the best hugs, where she throws her arms around your neck and squeezes all she can. She wants to be around people so badly and loves to observe everyone and their interactions. She is so comfortable with herself and I hope she stays that way. I thank God for her every day, she makes us very, very happy!

Thursday, July 5, 2012


Today was a very much anticipated day. Today was a day we had waited 8 weeks to arrive. You would think that, after two pregnancies and having to wait that gestational period, that 8 weeks would seem like nothing. For 8 weeks we had processed, stressed, worried, cried, anticipated, researched, discussed, prayed, mulled over, and much, much more. For 8 weeks we had worried about a number of different scenarios knowing that today we would have some answers. We wouldn't know all the answers, but we would know some pretty definitive things.

Today we found out our Baby Raptor has 47 chromosomes. Today we found out that Baby Raptor has three chromosomes on his or her 21st. Today we found out Baby Raptor has Trisomy 21. Today we found out Baby Raptor has Down syndrome. It is so odd to is very, very difficult to say. Matt and I agree that it is a very different story to go from this being a theoretical to this being our reality. This is true about our baby. Period. This is real. This is no longer a "might be happening" and has turned into "this is what we know". I would be lying if I said I wasn't hoping for something different. I would be lying if I said I was able to hold it together for more than about 5 minutes in the Doctor's office before I started crying. It isn't what I expected to hear. We obviously were trying to prepare ourselves to hear that Raptor has Down syndrome. We even went over and over in our heads what it might sound like to hear our Doctor tell us "Baby has Trisomy 13", "Baby has Trisomy 18", "Baby has Trisomy 21", "Baby has some other genetic issue", or "Baby has nothing we can see". We forced ourselves to make sure we knew each of these things was a possibility. But even though we knew that our biggest chances were Trisomy 21 or nothing at all, we were both really pulling for nothing at all. We were both really wanting and maybe even expecting to hear that all testing came back normal. After all, besides the nuchal translucency/nuchal fold measurement, everything looked perfect on all of our ultrasounds since then. Even today, the nuchal fold looked much better in range, our Echogenic Foci (spot on the heart) looked less bright, and all measurements were within days of being spot on perfect with our due date.

Despite all of our preparedness and telling ourselves not to get our hopes up, we had. So we were both let down and we are both pretty overwhelmed by today. There is definite sadness in today, this is not what we had set out for in our journey, but we have been reminded lately by 3 or 4 different situations that we cannot pick and choose what happens with and to our kids. We have also been reminded that things could be a lot, a lot, a lot worse. We actually feel very convicted with that, as someone we know is going through something very difficult and very different from T21. So we are thankful and grateful beyond measure that Baby Raptor looks really healthy, almost out of the ordinary healthy considering the diagnosis. There is still that sadness though...we aren't sure what to expect...and will not know a lot about what this baby can and cannot do until after they are born and in some instances way after they are born. I think a lot of what we are feeling is a release of all of that anticipation that has been building for the past 8 weeks (not to make too light of the situation, but I think I am going to sleep really well tonight).

I expect that we will be sad for awhile longer. I expect that there will be moments throughout Raptor's life that we are sad about this extra chromosome. I expect that there will be times that we are really, really angry about certain things that are beyond our control. I expect that there will be times that we feel that this is way more than we can handle and that we won't be sure of exactly how to proceed.

We still have some immediate hurdles to overcome. I have a very important appointment on Monday to look at Raptor's heart. I obviously pray and hope that the heart is perfectly functioning and normal. Not only do I want the heart to be normal because I want Raptor to be healthy, but I really, really want to stay with my Doctor and to deliver at my hospital. I will of course switch wherever we need to and rejoice that we have such good hospitals at our disposal, but if I can be a little selfish right now (and I think I can be), I really want to stay put! A normal echo on Monday means that as far as labor and delivery goes, everything can proceed as normal, which sounds really great to me. It means that Matt can cut the cord, Raptor can be placed on my chest immediately, breastfeeding shouldn't be a problem, and that hopefully no NICU space need be allotted for us.  Furthermore, we have a lot of extra monitoring that will take place to make sure that baby is growing well, that my fluid levels are normal, and that my placenta is nourishing like normal. There is still a good deal of risk for complications associated with Down syndrome later in pregnancy so we are prepared for cautiousness.

After a few days, I will be ready to move forward, I think. I will be ready to Bloom. I borrowed that from the title of a wonderful book written by Kelle Hampton. She found out at birth that her daughter, Nella, was chromosomally enhanced with T21 and is one of the Down syndrome blogging "rock stars". If you have time and want to read a very emotional birth story please do so here. The way she talks about Nella wanting love and her older daughter showing unconditional love and pride in her little sister spoke volumes to my heart. I found a lot of comfort and pearls of wisdom from her blog and book and hope to glean information from her writing in raising all three of my kids. I am currently latched on to this quote said by her sister Carin when she came to see Nella at the hospital- "I want you to picture some hypothetical person in your mind- someone who handled Down syndrome exactly like you wish you could. Now go and be that person. Rock this out, rock it out and show the world another way." I really, really want to do right by this kid. I don't want him or her, or us, or our family, or our girls to be pigeon holed into some preconceived idea or misconception about what we "should" be like. I just want all of us to show each other what we are capable of. I know it's going to be hard, and challenging, and difficult, but I want to do what is best for all of my kids and so I am going to fight my hardest to make it happen.

Yes, I am sad now...but we got the testing done early so we could move past that. So sadness now and ecstatic happiness that Baby Raptor is gleefully kicking away as we "speak" and is either poking or using my bladder as a trampoline just to make sure that Mommy knows who is boss. And soon it will be all (or mostly) happiness peppered with least I think so! We are beyond thankful to God for so many blessings in our life and we continue to thank all of our support network for the amazing job loving us and Raptor even when we didn't feel so worthy of love. I can really and truly say today that I love Baby Raptor and cannot wait to snuggle and cuddle him or her.

Monday, July 2, 2012

Almost time

The response and outpouring of love, prayer, and support has been overwhelming from sharing what we are experiencing with this pregnancy. We feel like through processing it all we are in a really good place, as good as we can be right now. In some ways I find it hard to believe that the day after tomorrow, we will finally get to look at Raptor's chromosomes. In other ways, I cannot believe how long this process has taken...on Thursday when we go in to see the report from the amniocentesis it will have been hours shy of 8 weeks. Now technically, we could have found out on this past Thursday and I could, in theory, call right now to talk to the genetic counselor over the phone to see what the report says, but I feel better about it all this way. It adds a sense of control to something we have had absolutely no control over. It also makes it feel more normal, less urgent, and like there is a sense of "it doesn't really matter, we just need to know in order to prepare." I am really excited, besides getting to know, to look at these chromosomes. It is a very cool side effect to having this testing done, getting to see a map of what makes Baby Raptor who he or she is. The very building blocks of his or her life will be mapped out in front of us! I was speaking with several people over the past few weeks and I think it is incredible that we know so much about the human body that we can isolate the difference between 46 and 47 chromosomes. We humans think we are so amazing that we can build Ipod nanos and small circuitry, but God is so amazing that He can build our chromosomes! And that isn't even the smallest part of our body!!!

One thing that I am having to prepare myself for is the fact that not all of our questions may be answered on Thursday. There is a lot up in the air with different testing that has been done. Regardless of whether of not Raptor has T21/Down syndrome, we still have to take a good look at the heart, and I will still be on pretty close watch for the last 10 weeks of my pregnancy from what I understand. I feel like we need a flow chart with several different hypotheticals to summarize where we could be headed. And we could, theoretically, have something more serious to deal with than T21. I realize that we will either have an answer or a lot of things ruled out on Thursday, but we still have a long road ahead of us just to get to delivery. It feels odd that everything seems so normal on the outside and I am able to do all my typical tasks when there is so much going on inside me with this baby. It will be exciting to get a "normal" ultrasound beforehand because even though I have had two very long, very intense ultrasounds over the past few weeks, they didn't print out pictures for us to show off to everyone and they don't really linger over the cute little face or hands and feet like we are used to. We are very thankful for the amount of knowledge and how capable all our medical providers have though.

Regarding our feelings ourselves (and we will see how this actually manifests itself on Thursday), Matt and I truly want this baby to be healthy. In our hearts, we obviously are hoping for normal chromosomes, no heart issues, and for everything to resolve itself. But we are also preparing for an extra chromosome and we can't make any assumptions about the heart issues before we talk to the specialist because we just don't know. Matt and I have gotten to a place where we know, eventually, we will accept and love and adore Raptor because Raptor is ours. We know that there will be pain and strife and struggles regardless of how many chromosomes Raptor has. And we know, in the end, it is important for us to "follow" our children and let them show us what they are capable of. We have, in our opinions, done a good job of not holding MacKenzie and Keegan back and letting them show us their abilities. Raptor will be no different. We will love, support, encourage, and teach our hearts out and know that is enough. I am to the point where I am excited again, I get a lump in my throat thinking about holding this sweet baby, and am planning normal things like birth announcements and Christmas cards with all three kids. I am freaking out a little bit right now, not because of the potential extra chromosome, but because I just typed out "three kids"! We know we might be sad for a while if we see an extra chromosome and that is ok. We are just excited about what the future holds and are very glad we are taking this on together.

Again, we are so appreciative of all of the kind words sent out. Our cups are truly overflowing with the outpouring of love we have received. It has been nourishing and strengthening for us and Raptor.