It's been fun blogging every day this month to raise awareness of Down syndrome. I don't know if I necessarily did that. There is certainly a lot more I could have written about Down syndrome and the issues around it, like using people first language, or dispelling myths, or the use of the "R" word. There are other people that write about these things far better than I could so I decided to give you bits of our family, like I normally do. Because really, our lives, with Wil, pretty much reflect a typical family. Yes, we see doctors more often, we have a history of pretty significant medical issues, and Wil requires more attention in certain areas. But really? Those things have become so much a part of our story, our day to day lives, that I hardly think about it. Most days I don't think about the fact that Wil has Down syndrome. I am sometimes caught off guard in public when someone brings it up. I forget that he wears his diagnosis on his face because when I see his face I don't see Ds; I just see Wil, with his brilliant sparkling eyes, his rosy cheeks, and big grin. Just like any other toddler Wil has his playful, happy moments and his ornery, stubborn moments. He has favorite books, toys, food, activities and cartoons. And when he is not aggravated with his brothers he is loving on them.

**Warning**I want to finish Wil's story today so this is a bit long. If you have been keeping up with all this you might want to grab a snack and get comfortable. If your tired of this never ending story, I don't blame you, come back tomorrow - I promise to have some new pics of the kids up. And maybe a funny or two from Luke.

It was a strange place to be. Earlier in the day I went to see Dr. R for what was becoming a routine appointment to see how Wil was holding up in utero and now, four hours later, he was here. And I was not with him. I was recovering from the surgery in post op and he, my premature son with issues I was totally unaware of, was in NICU III being cared for by a whole bunch of people I had never met. I was learning a new kind of trust. And once again I found myself in the position of having to wait. I didn’t know exactly what I was waiting on. Waiting on news that Wil was fine? That he was definitely going to need transfusions? That they had discovered something more? Something. Anything. I just wanted someone to come talk to me about Wil. And then there was my nausea, oh it was horrible. Turns out I do not do well coming off anesthesia, so I was waiting for that to be over too.

It wasn't until the next morning that I got any real reports on Wil. The nurse that was checking my incision was finishing up when Dr. R walked in. His tall, thin frame stood at the foot of my bed. James was not with me, he had gone home to be with Luke. Oh how I wished he were with me because I could just tell by the flat look on Dr. R's face this wasn't going to be encouraging. Though, truth be told, he never carried much expression and his bedside manner left a little to be desired. The exchange that followed was not an exception. Dr. R said, "Wil is doing okay, remarkably his hematocrits are fine so he won't need any transfusions but he appears to have an omphalocele that will likely require surgery. The Neonatal team is still trying to determine if that is, in fact, what the mass on his umbilical cord is. I also think he may have something called Beckwith-Weidemann syndrome. I will let you know more when we know more." And then he was gone. I sat in my bed, doped up on pain meds, with absolutely no one to talk with or ask questions of. How could he just dump that on me when I am here alone and not offer any explanation at all?! I reached for the phone and called my friend Kim who jumped on the computer and read the symptoms of B-W syndrome to me. She was reading slowly and carefully so I suspected she was also reading selectively. I never did ask her about that because it all became irrelevant pretty quickly. Later we received a visit from the Neonatologist, Dr. M, who said Wil did not have an omphalocele. All he had was a large benign mass on his umbilicus that they would "remove" but would leave him with a very prominent "outty." Big deal! We could deal with a prominent outty. She also said that they had ruled out B-W syndrome and wanted to rule out another syndrome, Down syndrome. She then offered to roll me down to NICU III to see Wil. FINALLY!!

After receiving instructions from the nurse on NICU protocol and being "warned" of the machines Wil was hooked up to I put on my paper robe and mask, washed my hands and forearms thoroughly and was wheeled to Wil's isolette. It was the one with the glow around it from all the bilirubin lights. He was precious, even with a CPAP and all those wires running from his body to various machines. I was able to sit beside him and touch his hand but could not hold him. I kept looking at him. Looking for some kind of sign from him, looking for Down syndrome. I had already been told that he did not have the palmer crease nor the space between his toes, two traits often found in people with Ds. It was hard to see much in his eyes because he had not opened them yet and he was still pretty swollen. I so wanted to hold him, to tell him everything was going to be okay. That he had an amazing dad and a fun-loving brother who couldn't wait to meet him and me, a mom who would do her best to give him all that he needed. But was that a promise I would be able to keep if he had Down syndrome, I wondered. I knew absolutely nothing about it. But we did not have a diagnosis yet, I kept reminding myself. It was all just speculation. Besides, I just didn't see it in him.

After two more days I was released from the hospital. Nothing significant had changed for Wil. He was still in NICU III, we still did not have a diagnosis (the geneticist came by to see Wil but felt he couldn't say with much certainty based on his bedside exam, so we had to wait on the karyotype), he was still hooked up to all sorts of machines, after being intubated for 12 hours he was back to breathing room air, he still needed every bili light in the unit, and he wasn't gaining weight. But it was time for me to go home. They wouldn't let me stay. Next to handing Wil over for heart surgery at five months old, leaving him at the hospital that day was the hardest thing I have done. I cried all the way to the car, sharing an elevator with another new mom being wheeled downstairs. But she had her baby in her arms. It all just felt so wrong. But it was what it was and I had to do what was necessary to get Wil strong and healthy so he could come home. I also had to recover from my c-section.

In the meantime I did what I do best, for better or worse, I went into “control” mode. I devoured everything I could get my hands on concerning Down syndrome. I read and read and read. James and I were overwhelmed with information and we didn’t even know yet whether our second son would be carrying us on this journey. He was just a few days old and I'd had so little time with him due to the limited hours in NICU III. The day after I was discharged my mom drove me to the hospital so we could both spend time with Wil. This was the day things changed for me.

His nurse, Elvie, was there and she was our favorite. She was a seasoned NICU nurse who was tender and caring. She was honest but not alarming. She was as good with the parents as she was with the newborns. In hindsight I see that it was God's providence that she was assigned to Wil his first week of life, more for my sake than his. As we stood by Wil’s isolette she was talking with us about his night and her impressions when Wil opened his eyes and looked up at me. It was the first time he really opened his eyes for any reasonable length of time. That’s when I “knew.” Those beautiful almond shaped eyes met mine and I knew that our lives were going to be very different than we had imagined. I saw it in his eyes with such certainty, it was as if he was speaking to me. I would like to say that I embraced this new certainty but I didn't, instead I walked into the waiting room and fell into a pile of tears until my mother and Elvie came to scoop me up. I don't remember everything that my mom said, or Elvie, but I remember it helped me put one foot in front of the other so that I could make my way back to Wil. Elvie then asked if I wanted to hold him. Really, I can hold him now? It was what I had been waiting on. And it was exactly what I needed. Wil wasn't a diagnosis to me, he didn't scare me, I loved him so much and, if possible, my love for him grew exponentially that moment, in NICU, when he spoke to me through his eyes.

For me, that is the end of Wil's birth story. Our lives became marked by the "before" and the "after." Wil remained in NICU for one month, his Karyotype came back to confirm what we knew, Trisomy 21, and we went on to discover his heart defects and so much more. Wil has changed us, and challenged us, and taught us, and encouraged us. The "after" has been so much better than the before!

So much had changed in less than 24 hours. The night before we were returning from vacation, returning to work, and getting ready to tackle my long 'to do' list as I entered my third trimester with Wil. We didn't have any time to process this major shift in our lives as we waited for the hospital shuttle. Instead we had to make some quick decisions. We decided that I would go to labor and delivery alone while James returned home to pack a bag, call our friends and make arrangements for Luke. We knew there would be some time before the c-section because Dr. Richards wanted to do an amniocentesis before delivery to determine Wil's bilirubin levels and exact blood type. This was the only way to know exactly how anemic Wil was which would be important for the Neonatologist and her staff as they prepared for Wil's arrival. Dr. Richards believed at the very least he would need a blood transfusion so they needed to go ahead and contact the blood bank as well. As I stepped on the shuttle James made his way to the parking lot.

While riding the shuttle over I called my parents and filled them in best that I could. (I think my mom starting packing her bag while we were still on the phone because they arrived within 7 hours.) After I hung up with them I sat in a daze waiting for my stop. It wasn't supposed to happen this way. We went through so much to get pregnant with Wil and now, 12 weeks before his due date, he is being delivered emergently. What will this mean for him? What other problems will he have, apart from anemia, that are brought on by such an early delivery? No one had really discussed any of that with us. Everything had moved too quickly. I couldn't think.

I walked onto labor and delivery and the nurses greeted me by name. Dr. Richards must have described me. They got me settled in my room and started preparing me for both surgery and the amnio. They also gave me surfactin, a steroid shot to help with Wil's lung development. Dr. Richards arrived and did the amnio. While we were waiting on the results James returned, they finished prepping me for surgery, I met with the anesthesiologist, signed all sorts of paperwork, and waited some more. It was somewhere during this time that I started getting really nauseated. Really nauseated. So they gave me something for that which made me so darn antsy I thought I would come out of my skin. I was physically miserable, and scared, and confused. And all we could do was wait.

I don't remember how long it took but when Dr. Richards came through the door with the results the news changed again. This time for the better. Wil's bilirubin levels were not as critical as he thought they would be. It didn't make sense to him at all. I could see the bewilderment in his face. Dr. Richards, by the way, is a top notch perinatologist that women come from all over to see. He has seen it all. Though he went on to tell me he had never seen such contradictory results before - "your boy is baffling me," he said. The bilirubin level was not great, but it was not horrible. Not horrible enough to delivery Wil at 27 weeks and put him at risk for so many other problems. So, the urgency was gone just as quickly as it arrived.

The new plan was for me to return to Dr. R later that week to repeat all the tests. We went back Friday and this time took a bag. Everything looked approximately the same. And so it went for four more weeks. Each week we felt more and more hopeful that, although Wil had anemia and would likely need a blood transfusion at birth, he would go close to full term and be just fine. James attended each appointment with me and brought a bag each time. When I hit 32 weeks we decided James didn't need to come. After five of these appointments I understood everything and didn't feel as frightened, I didn't feel a sense of doom hanging over us anymore. The appointment was moving along just like each one before. I had come to recognize the numbers and graphs and pictures from the cerebral blood flow test. And I knew, lying there in that dark room with only the glow of the monitor, and four residents and two interns standing beside me, that Dr. R was going to send me over again. And he did. I asked if I could go home first, make arrangements for Luke, and come back with James. He said, "no, this time we will definitely be delivering Wil. We have reached a point where he will be safer outside of you than inside."

James showed up with our friends, Steve and Kim, as I was being prepped for the c-section. We visited briefly, the doctors were in and out letting me know what to expect at each stage, and we met with the neonatologist who believed the biggest issue we would be facing was a blood transfusion, or two. I didn't like the sound of that at all but at this point, after almost five weeks of worry, I was just ready to meet Wil and get him whatever he needed to get strong.

Wil was delivered at 8 pm and weighed 5 lb. 8 oz., a pretty big guy for being 8 weeks premature. He was incredibly swollen, an effect of the anemia, so we knew some of that weight would drop in the days to come. There were no less than 8 people hovered around and over him in the delivery room. They whisked him away before I could get a good look at him, but not before I picked up the feeling that something more was going on. And then my nausea came back with a vengeance.

We had just returned from vacation. A trip to SC to drop Luke with my parents so we could have a few kid-free days in the NC mountains. We determined it would be our last opportunity to get away for a while, before the shift in family dynamic a new baby would create. We had no idea how true that would be.

As we were getting settled in back at home I made my way to the sun room to check phone messages. There were seven. The first was a hang-up and the second was a friend. The third was my ob/gyn. Strange, I thought when I heard his voice. It was Sunday and his call had come the previous Wednesday. His message was to call him as soon as possible to discuss my recent bloodwork. His message sounded urgent which made for a very difficult and sleepless Sunday night. When I reached him Monday morning he explained that at some point between my first trimester bloodwork and the latest round at 26 weeks I had developed the 'D' antibody in my blood. This antibody develops when mom's blood (those that are rh-) crosses the placenta and mixes with baby's blood (if positive). At 28 weeks it is routine for women that are rh- to receive a shot called rhogam to prevent such a thing (in the event you are carrying a baby with positive blood type) but I evidently had an internal bleed earlier in my pregnancy without knowledge because not only were the antibodies present but the titer (the concentration of the antibody) was very high. It was the high titer that alarmed my doctor and prompted him to immediately refer me to a perinatologist.

The appointment had been scheduled for me, James and I just had to show up. We had absolutely no idea what to expect. My pregnancy with Luke was pretty uneventful - at least until delivery - so my new label as "high risk" was a little unnerving. James and I met with Dr. Richards briefly before beginning the tests where he explained how rare rh sensitization has become, since the advent of the rhogam shot. Great! The first test was a level III ultrasound which included watching Wil's cerebral blood velocity (the blood flow in his brain, also unnerving) and taking many, many measurements, then a non-stress test and biophysical profile. After all of that was done we were ushered into a conference room where Dr. Richards wasted very little time telling us that Wil was very sick due to the antibodies. The big test for rh sensitization is the cerebral blood flow of the baby. And Wil's was not good. This told Dr. R that Wil had severe anemia which could be very dangerous for him. He also had an enlarged liver and enlarged umbilical cord that he attributed to anemia. He felt, at that point, Wil was at more risk inside the womb than outside. He then instructed me to go downstairs and take the shuttle to labor and delivery. He had already let them know I was coming. Wil was going to be delivered that night. At 27 weeks.

With Timothy recently turning two (and finally starting to form some words!) and Luke turning six I have been thinking a lot about Wil. About where he was when he was two and where he might be when he is six, about the milestone's he has reached, about the milestone's he has yet to reach, about how much harder he works for things, about how quickly he gets past hurt feelings and moves to hugs, about how he seeks me out above anyone else in the house when he is upset. I have also been thinking about what life would be like without Wil. I simply cannot imagine it. I feel so incredibly fortunate to have Wil in my life. In our lives.

Wil is not "typical" and neither was his conception, my pregnancy with him, or his delivery. Humanly speaking Wil almost wasn't in our lives. After months and months of dealing with secondary infertility, undergoing surgery for endometriosis, test after test to determine the nature of my infertility, clomid cycle's, and three months of failed IUI's, James and I decided we were done with treatments. I didn't feel, emotionally or physically, that I could go through with the shots, the ultra-sounds revealing the not so good news that my "eggs were just okay but let's go ahead and inseminate" followed by more blood draws and another big fat negative. Then there was the financial side of things. Our insurance didn't cover infertility treatments and we were spent out. So during the third IUI cycle James and I decided we would stop. We had Luke and were incredibly grateful for him and down the road we would pursue adoption.

We had made our decision, or so I thought. There were a handful of people in our lives who knew we were going through these treatments, knew of the heartbreak we experienced with each failed attempt, knew how badly we wanted to parent another child, and knew we had made the decision to stop the fertility treatments. One of these families came to us and shared their love for James and Luke and me and their desire to see us parent more children. They very generously offered to pay for another treatment cycle and to help us recover from those we were still paying out. It was at this time that I realized I wasn't done. Their offer and encouragement gave me a strength from the Lord that was undeniable. I had to give it one more shot. When the money wasn't an issue I realized that although I felt emotionally and physically drained from the year long process, my heart was not. My heart didn't feel done and my ache for another child was too strong to give up just yet. And so, we went one more round. And, determined to give it everything I could, I got brave with my reproductive endocrinologist and demanded that he prescribe progesterone after insemination (my own research had convinced me that this was my biggest problem but my RE did not agree) and after refusing on all other cycles he finally agreed. I also received acupuncture.

The day that I was due to receive the results of my hcg beta (blood work to determine pregnancy) was the same day James and I were closing on our first home. In the middle of the closing my cell phone rang - it was my RE's nurse so I excused myself from the meeting knowing I was either going to fall apart crying or scream for joy. She had been with us from the beginning so I knew from her voice that this phone call was different when she said, "Stacy?" with a hint of enthusiasm in her voice. She went on to tell me that I was very, very pregnant with a strong, healthy beta that had doubled as it should. I let out a squeal and then I cried, tears of joy.

There is hardly a week that goes by that I don't think about our friends and their generosity and their encouragement and their belief in us as parents. The Lord used them to bring us Wil and I will be forever grateful for that.

Of course, at the time of that positive pregnancy test we did not know that Wil would be Wil. We also did not know the turn my pregnancy would take at 27 weeks.

http://waldenhouse.blogspot.com/2008/10/wils-birth-story-part-two.html
http://waldenhouse.blogspot.com/2008/10/wils-birth-story-part-three.html
http://waldenhouse.blogspot.com/2008/10/wils-birth-story-part-four.html

This cutie is Miss. O and you will be seeing more of her. She stuck close by Luke all day and referred to him as "boyfriend." Huh!?

After painting pumpkins and shirts and pants and various body parts the kids - and a few parents - loaded up for a hayride.

Hayrides build up and appetite so we moved straight to cake and ice cream. This is the "back up" cake. You know, in case my experimental pumpkin cake failed.

The pumpkin cake was a hit. And so were there gifts that will occupy Luke's empty bookshelves.

Luke thoroughly enjoyed himself and I think his friends did too. It was a good day!

With the pumpkin cleaned out Luke's design was drawn and carved.

While they worked on the pumpkin Timothy pumped himself full of air.

Then he joined Wil to rummage through the recycling bin. Hey, they were content.

With Luke's pumpkin complete it is James' turn to design his pumpkin face.

Wil, the consummate encourager, applauds each car that drives by.

Luke's pumpkin poised to greet next weeks trick-or-treaters.

James' is poised to scare them.

He had removed everything from the top three shelves of his bookcase and crammed it all on the bottom two shelves - and between the bookcase and the wall - in order to "make room for all the presents I will be getting for my birthday." He went on to ask if everyone would be bringing him a gift and if it was possible that each person attending might give him more than one gift. He was slightly disappointed with my answer to that last question.

So, I took my hand off my back and gave my soon to be six year old a hug and told him I hoped he really enjoyed his party - friends, cake, gifts, and all.

I just can't pull it off today.

I am sitting in a quaint little coffee shop downtown with only 30 minutes to spare before I meet some friends for dinner and a drink. I somehow managed to eat up every minute of today with piddly stuff like laundry, dishes, dishes, and more dishes after a dinner party last night, putting together gift bags for Luke's birthday party Saturday, picking out miniature pumpkins for same party, and holding Wil during his post nap funk.

So, no post today. Or does this count?

But I will leave you with this. . . on the way to have breakfast at a friend's house on Sunday morning Luke asked if our friends had kids.

"no, they don't" I replied

"oh, they must be really bored then," said Luke

In honor of Down syndrome awareness month you will find many "21 things" lists on the blogs of parents with children owning an extra copy of the 21st chromosome. I did this last year and will give it another shot this year. Most of the 21 things offered last year are still true but I will try not to repeat.

1. Wil does not like his belly to be exposed. Anytime his shirt comes up he grabs the bottom and pulls it down quickly.

2. Wil says "hi" to everyone that he passes, even the cars that drive by while we are strolling.

3. Wil absolutely, positively, without question cannot stand to have his hair cut.

4. Wil delights in seeing others have fun more than anyone I have ever known.

5. Wil has decided that he does not want to sit in his car seat anymore, he wants Timothy's.

6. If Wil disapproves of the song selection in the car he lets us know with a throaty "aaaaarrrrgh."

7. If Wil approves of the song selection in the car he lets us know with a big smile and swinging legs.

8. Wil requires no less than three hugs to get through most meals.

9. Wil loves his Papa and asks for him at least twice a day.

10. Wil can put away more pancakes than James.

11. Wil loves to be outside. He especially likes to swing in the hammock.

12. Wil rubs and pats the back of whomever he is hugging.

13. When Wil finishes his food or drink (or just doesn't want anymore) he hurls the plate or cup across the room. This drives me crazy.

14. After Wil hurls his plate and/or cup across the room he is instructed to pick it up and return it to the table, which he does obediently. Then he grins largely and applauds himself for his good work.

15. When Wil doesn't want to do something he repeatedly throws his arm out toward unwanted activity as if to push it away while saying "nu, nu, nu" in a very disapproving tone.

16. Wil's favorite song with motions is "Wheels on the Bus."

17. Wil adores his big brother, Luke. When Luke is sitting on the floor Wil loves to stand behind him with his arms around Luke's neck.

18. Wil is not so sure about Timothy but he doesn't offer him kisses before bedtime.

19. Wil is really drawn to baby's.

20. One of Wil's favorite activities is riding in the golf cart with Nonnie.

21. Wil has already taught us far more than we will ever teach him.

Kids with Down syndrome are notoriously flexible. They are the envy of all of us tight muscled, inflexible adults.

And there he goes, making his lap around the den. He may look like he is walking but he is not - my camera's "kids and pets" mode is pretty good, eh?

Then he returns to the center of the den to throw himself on the floor.

Meanwhile, Wil is playing with his favorite musical toy. I see it coming but I can't stop it.

When he hits the floor he laughs and laughs.

And so it goes, hour after hour, day after day. Then he spots me and sets his sites on my camera. Alrighty then, bye bye now.