Friday, December 21, 2012

Heavy Heart

My heart has been so heavy ever since the tragedy in Connecticut last week. My mother's heart hurts and my teacher's heart hurts. Every time I hear anything about it or even think about it, I get choked up. I have been trying to think of how to address it in a blog post, but I don't have anything profound to say.

Even though my kids are not old enough to be in school, my first thought after hearing about all those little lost souls was my own kids. When you put your child on the school bus in the morning, you expect them to get back off of it in the afternoon. I can't even imagine what those parents were feeling as they made their way to that firehouse, frantically searching for their kids. The joy and relief for those who found theirs....the devastation and fear for those who didn't. I can't even imagine. I don't want to imagine, but my mind keeps going there. My mother's heart hurts for them. So badly.

My next thought, of course, was of the teachers. The sheer terror they must have been feeling, while having to remain calm for their students' sake. My teacher's heart hurts for the feelings of guilt and helplessness they must feel. As a teacher, I always dreaded our lock down drills. Not only because it could sometimes be a long, boring, frustrating ordeal, but also because it always gave me the creeps. Often, during these drills, the police or school administrators will come rattle the classroom doors to make sure they are locked. That was always my least favorite part. I would instantly get the chills, imagining it being a real perpetrator. Even though I haven't heard too many details about what happened in various classrooms at Sandy Hook, I can guarantee those teachers were heroes, and I have appreciated seeing the outpouring of support for teachers since the ordeal. 

I won't get into politics or policy. I will not make any statements about gun control. The one thing I would like to say is that kids are safe at school. As safe as they are anywhere. We've seen, unfortunately, that tragedy can strike anywhere--malls, movie theathers, walking down the street... Short of keeping our kids locked up in a padded room, there's not much we can do to guarantee their safety. If a madman wants to commit a crime like this, they will find a way. Kids are safe at school. Their teachers love them. As Vicki Soto, Lauren Rosseau, and the other teachers at Sandy Hook did, teachers would do everything in their power to keep your kids safe. We know that each and every one of our students is someone's baby. Becoming a mother myself made me really realize and appreciate that. Every student is someone's most prized possession, and teachers don't take their responsibility lightly. We know that parents are entrusting their children to us during the day, and it is an honor to care for them.

My heart goes out to every child, parent, teacher, janitor, and first responder that was affected by this tragedy. Such a terrible thing to happen, especially at Christmastime.

Wishing everyone a blessed, safe Christmas!

xoxo, Julie

Tuesday, December 11, 2012

Too Good to be True?

Hi Friends,

   I guess it's been a while since I've posted, but time flies and we've been having some napping issues at our house (for both boys), so I don't have much of a chance to blog. I won't say that they are both napping at the same time right now, because that would jinx it :)

   I have been pinching myself a lot lately thinking that Bryce's health and development is too good to be true. There is a book called Babies with Down Syndrome: A New Parents Guide that is kind of the "bible" for parents of kids with Downs. I have learned that it is best used as a reference, rather than something to read from front to back. It scares the crap out of me. Some of it is so basic, it's silly (you need to give them baths....imagine that!), and some of it is so detailed it's scary. For someone with a history of anxiety like me, the chapter about possible health problems definitely should have been avoided. Because we have dodged some of the most common issues these kiddos can be born with (heart and bowel issues), I just have this terrible anxiety that it is only a matter of time before something happens. I feel like it's too good to be true. When I really read about all these possible health troubles, I realize that it's not worth worrying about. Many of them say 5% of kids with Downs may suffer from this or that....well, what percentage of 'typical' kids suffer from that? I have to keep this in perspective when I get on a worrying kick, but the two that really scare me are leukemia and epilepsy. Leukemia occurs about 20 times more often in kids with Downs than in other kids. Fortunately, for some reason, these kiddos also tend to respond to treatment better than other kids, so the survival rate is great, but one of my kids having cancer is one of my worst nightmares.

    I also know that there are people with Down syndrome that live long, full lives with little to no health problems. We actually met one of those people at our benefit. A young lady named Katie and her mom came to support us, and her mom said the only trouble Katie has ever had is chronic sinus infections. She also works full time and lives away from home. It is certainly possible, so why do I just feel like everything is too good to be true? Worrying is just part of my nature, I'm afraid. I have not said more prayers of thanksgiving to God than I have since Bryce was born. I thank Him every day for Bryce's health and pray that he stays that way. If you would like to join me in those prayers, I would appreciate it :)

   Bryce has changed so much in the last month, it's crazy! He is reaching out and grabbing everything within reach (including my hair!), giggles, loves being tickled, and just starting rolling from tummy to back the other day. Other than still having some head control issues (although his neck strength continues to improve), he is right on track with other 4 month olds and ahead of his adjusted age (according to What to Expect the First Year, anyway). He is still a content, easy baby, although his deciding he doesn't want to nap in his crib continues to be a pain in my neck. His early intervention teacher says that he is much more vocal than a lot of kiddos with Downs, so I'm hoping this means good things for his speech development later on.

    Connor and I were having some trouble getting along the last few weeks--mostly a result of him refusing to listen to me and throwing tantrums. My wise hubby pointed out to me that although Connor doesn't show resentment for Bryce, his acting out was probably a result of trying to get my full attention. Since that was pointed out to me, I've made more of an effort to just put Bryce in his bed with his mobile on, or lay him on the ground more often so I can focus 100% on Connor. We have been doing much better. He is such a good boy, and he has been very good about adjusting to having a brother around.

    With Christmas coming up, I'm not sure when I'll have time for another update, so I'll wish all my readers a "Merry Christmas" now. I hope everyone has a blessed and safe holiday season!

xoxo, Julie

P.S. If you have a moment, check out "The Pledge to Cure Pity"  (button/link on the right side of my blog). It is a great campaign to get all of us thinking a little differently about people with disabilities. They don't ask for any monetary donations--just to raise awareness. You can take the pledge and share that you did on facebook and/or your own blog.

Monday, November 19, 2012

Bryce at 16 Weeks

Boy, is time flying by! Somehow, our sweet baby is coming up on four months already. In some ways, it feels like he was born yesterday, in some ways it feels like a lifetime ago.

At sixteen weeks, Bryce is, in many ways, coming out of that newborn stage. He is much more responsive, which is so fun! He finally started smiling at us a few weeks ago, and although they're coming a little bit easier for him, he still makes us work for it. He has begun reaching for toys a little more purposefully and is very content to lay on the floor watching Connor or his toys. He is verbalizing so much. I love hearing those little baby sounds! Sometimes when he smiles he even does a little chuckle-type sound which makes me hope he'll start laughing pretty soon. He has found his hands, and often holds them together over his chest. He also likes to suck on his hands. He is still very active and can spin himself around 180 degrees when laying on his back.


One of the downfalls of coming out of the newborn stage is the fact that he can't/won't sleep through everything like he used to. He wakes up easily--especially when he hears Connor's voice, and for some reason has decided that he doesn't like to nap in his crib. He much prefers being held. Not always possible. Sorry, buddy. I realize that he doesn't need 20 hours of sleep a day anymore, but a couple hour long naps in the crib isn't too much to ask, is it? Needless to say, napping has become a source of frustration for Mommy and Daddy the past few weeks. He does fairly well at night...still gets up once or twice to eat, but generally sleeps (in his bed) well.


The early interventionists from the school district have completed their evaluations and will begin their weekly visits after Thanksgiving. His case manager/teacher will come out every week and the OT/PT will come as needed...probably about once a month. They will monitor his progress and give us things to work on that will fit into our daily routines. I really like all three of the women assigned to him, and will enjoy having them visit. His neck is getting a little stronger, and he can now hold it up for a few seconds, but there is still room for improvement. It is the one thing, physically, I still worry about, because I know it will set him back in other ways if he can't hold it up soon. (Still working on squelching my desire to compare him to other, "typical" babies.)

Bryce has already changed our outlook on many things. I find that I am much less judgmental of people who are different. I don't think I was really prejudiced before, but I didn't really think about people with disabilities much. It may sound horrible, but I guess I saw them as a little less human than the rest of us. I know now that I was so wrong. Now when I see people with disabilities, I force myself to say hello--to think of them as someone's child/brother/sister/friend--because I know that they are those things. If Mike and I want nothing else from Bryce's life, it is to raise awareness of Down syndrome. We already know that he is just as worthy of love as anyone else. He already has feelings and a personality like anyone else.

Recently, there have been many articles/stories in the news about people with Down syndrome. Many of these articles I have come across on Facebook. I like to think that maybe, just maybe Bryce has something to do with that. I know that as a country, people are becoming more aware and accepting (have you seen those adorable ads featuring babies with Downs??), but I also like to think that when friends and family come across those articles, they think of Bryce and want to share. Last week I posted this picture of Bryce smiling. It got 97 "likes" and 17 comments on Facebook. I honestly don't think it would have gotten such a response if he wasn't "special". I am overwhelmed by how accepting and loving our friends, family, and acquaintances are. Bryce is one blessed little boy!




Take care everyone!

3 Years Old!

Last Thursday, my first born turned three years old. Three. Three means no more pacifier. Potty training. PRESCHOOL. This has been a hard one for me. I just feel like three is so grown up. Like there's no going back. He's not my baby anymore.





Where has the time gone??

Birth Day


1st Birthday 



2nd Birthday

3rd Birthday


                                I am so proud of my big boy! Connor, you are my sunshine! XOXO....

Tuesday, November 6, 2012

Expectations

Hi Friends--

     While I've been working really hard on being positive and not worrying about Bryce's Down syndrome, I do still have my moments (days) when I feel sadness. Bryce has been doing so great, and I know we are blessed particularly with his health. I have told myself over and over again that I need to change my expectations for him. He most likely won't sit at six months. He most likely won't take his first steps around his first birthday. He most likely won't talk for a few years. Logically, I know that. Up until now, we've been able to kind of forget about it, because he is pretty much is doing everything he should be doing. As I mentioned in my last post, he actually exceeds expectations in a lot of areas.

     The other day, I tried to put Bryce in the baby swing again. The last couple times I've tried it, he couldn't hold himself up well enough to sit in there. He has now gotten really big, so I thought I'd try again. He looked so big in there. He seemed to fill the whole thing up! But he still couldn't hold himself up well enough. I left him in there for a few minutes, and he seemed content, but I was afraid to leave his side for fear he would cut off his air supply. It made me so sad. He's three months old and he cannot hold his head up. It has been the one concern I have had from the start. He is so strong that he can go up on his elbows and roll over during tummy time, but if you sit him up on your lap or shoulder, he can't hold his head up. Of all the issues we could have, I know this is a minor thing. I know that he won't be three years old and still unable to hold his head up. I know these things logically. I know logically that I need to give him extra time for things. But emotionally, it hit me. It snapped me out of the dream I have that he will be the exception.

     It is weird the things that hit me. Most days are fine, but we really are still on a roller coaster. Even though I feel like now that he is three months he starting to fall behind, there have also been some highlights over the past week or so. Bryce finally smiled for the first time on Halloween night. He has seemed to be on the brink for a month already (he just has a happy looking face), but that was the first time there was no question--he smiled back at me. I cried. It was so beautiful. Not only did it light up his whole face, but it was like an accomplishment. He has to try so hard to do it. First, he focuses really hard on our smiling faces, then his lips start twitching, then he scrunches up his eyes, and finally his mouth opens up into this huge smile. It is so sweet. I hope that it starts getting easier for him soon so we can start getting rewarded more often :)

    Another thing that has made me proud lately is the relationship the two boys are starting to have. I still worry about the day we have to explain things to Connor, or the day Bryce starts to think things are unfair, but I am hopeful that they will have a "normal" sibling relationship. Everything I have read tells me that these kiddos have normal love-hate relationships with their siblings and I know Connor will be a better person because of Bryce. Already, Bryce LOVES Connor. If he hears his voice, he will whip his head around until he can find him. He watches Connor so intently. He even smiled while watching Connor sing a song the other day. And Connor is starting to interact with him so much more and is always asking about Bryce's whereabouts. It is so fun to watch them together!

    I am still struggling with my expectations for Bryce. I want to keep my expectations high so I can push him to do his best, but I'm afraid I will continuously be saddened or disappointed. I hope I get to the point where I can just relax and let him progress at his own pace. I hope I get to the point where I can just applaud every accomplishment without thinking about how long it took, or what is coming next. I hope I get to the point where I can watch how hard he struggles and just be proud and inspired instead of sad. I know I will get there. I need to give myself time, too.

    I'll leave you with a few cute pictures :) Take care!
Brothers :)

First Halloween/3 months!

Working on that smile!

Tuesday, October 23, 2012

Bryce at 12 weeks

Hi Friends,

   I can't believe it, but it was 12 weeks ago today that little Bryce blessed our lives. I already look back on that day and can't believe how sad I was. He is such a good baby and has already enriched our lives so much. I had no idea at the time how blessed I was the day he entered the world.

    In just the past week or two, he's really started to change and grow up. For a while, I was worried because he hadn't changed much since he was born--he just ate and slept all the time. Now, he's much more alert and getting so strong. He has been rolling from tummy to back since he was 4 weeks old, and can now lift himself up on his elbows too. He loves looking at bright colors and patterns--especially polka dots. He watches his brother and is still teasing us with little half smiles. He is so content and really only cries when he's hungry. He has even slept through the night twice in the past week. Compared to his refluxy brother, he is a really easy baby.

    One of the overwhelming things about Bryce's diagnosis was (and still is) all the physical and developmental problems that can come with Down syndrome. We still don't know what he will be capable of, but so far he is doing so great. Mike and I often wonder if we are just in denial, but he seems just like a normal baby--ahead of where Connor was at his age. We have been meeting with Early Intervention teachers from the school district and he was evaluated by a private physical and occupational therapists. I am so proud to say that at this time he doesn't qualify for either of those private services. We got confirmation that maybe we aren't in denial--he really IS doing well.


  
     Until the age of two, premature babies have two different ages--their chronological age (when they were actually born) and their adjusted age (how old they would be if they were born on time). When Bryce was evaluated by the physical therapist yesterday, she did some standardized testing with him. For his chronological age, he scored in the 25th percentile. For his adjusted age, he scored in the 75th percentile. She averaged them out to 50th percentile. That means he is doing as well as half of ALL 2 1/2 month old babies. To say I was proud would be an understatement. I know this doesn't mean he'll necessarily stay that way--but any time he can exceed expectations I will be so proud of him.

    One problem many kids with Down syndrome have is low muscle tone and/or floppy joints. Their ligaments tend to be a little longer and stretchier than other kids'. All the people who looked after him in the hospital said he had really great muscle tone for a baby with Downs. The physical therapist said the same thing--the only place she saw a problem was with his ankles. The ligaments are really loose--you can bend his foot back so far it almost touches his leg. She said that when he starts standing or walking it may become a problem, but one that is easily fixed. He just may have to have some soft ankle braces for a while or maybe an insert in his shoes. I hope and pray that he continues to do well and keeps exceeding those expectations!

    Connor has really accepted Bryce as part of the family now. He is much more comfortable touching him, sharing our laps with him, and talking with him. If he sees Bryce laying somewhere, he'll go up and talk to him in the sweetest voice. We went to visit my sister and brother-in-law in Omaha last weekend, and as we were packing up and getting ready to leave, my brother-in-law was holding Bryce. Connor went up to him and said, "Um, Uncle Brett, we need Bryce". So sweet! A few weeks ago he either wouldn't have noticed or would have wanted us to leave him there!



    We are so happy with our family of four. Bryce is such a sweet baby and a wonderful addition to the family. We're getting our family pictures taken later today and I have to go get myself ready while the boys are sleeping. Take care everyone!

Thursday, October 11, 2012

Proud Mama

           I've said many times throughout Connor's life that I just want to freeze him at a certain age...starting at about six months. It's true that there are fun things about every age, but I really mean it this time. I want to freeze him just as he is RIGHT NOW.

            My first baby will be three next month. I can't believe it. I've been really weepy and sad thinking about it the past week or so. Yes, he has his two-going-on-three-I-think-I'm-more-independent-than-I-really-am moments, but he is so fun right now. I am so afraid I'm going to forget what he's like at this moment. I know I'll remember general things about him as a toddler, but every day he does something clever or cute or funny and I'm so afraid I'll forget. One of the reasons I want to blog is so that I can record some of these things. This post is really more for me--so if you don't want to experience an obnoxious, bragging mommy, you can stop reading right now.

Some of the things I love about Connor:

           His SWEETNESS. He is the sweetest little boy. He gets it from his daddy. Ever since he became mobile, he will often stop in the middle of playing just to come over and give me a hug. He will spontaneously say things like "I love you mommy", "You're my sweetheart", "You're my best friend", "I miss my daddy", etc. He has lately been coming up to our bed when he wakes up and he will put his arm around my waist or shoulders, just like he sees Mike do--it is so cute. The other day at Cub, I saw a kid who was about 14 sling his arm around his mom's shoulder while they looked at the Redbox. I so hope Connor will still be like that at that age.


           His INDEPENDENCE. He has always been so good at entertaining himself. When he was about 15 months old, he fell in love with all things transportation--cars, buses, trains--and could sit on the floor literally for hours and drive them around. He would lay his head on the ground and watch the wheels move. He would line them up, create a parking lot, etc. All by himself. No need for attention . Now he continues to love cars and trains, but always has a storyline going while he plays with them. He also loves doing jigsaw puzzles by himself. He'll sometimes ask me to do them with him, but doesn't really want me to put any of the pieces together. He just wants my company while he does it all by himself. Let me tell you, I have never appreciated his ability to entertain himself as much as I have in the last few months, with my bedrest and having a new baby around. How many women could have kept their 2 year old home while on bedrest?? I knew I could occassionally because he doesn't demand that much of me.

         His VOCABULARY. Connor has always been on the later end of normal for reaching his milestones--certainly nothing to worry about, especially considering his prematurity, but I like to worry about things. The thing I was most worried about was his speech. The child made me wait 18 months to hear "mama"! Now, I sometimes remember those days fondly--because now he NEVER stops talking! It wasn't really until this past spring that Connor started taking off in the speech department. Ever since then, he has amazed us with his vocabulary. He not only uses a large number of words and phrases, but always uses them in context as well. The other day he was playing with this trains and made some of them fall off the coffee table. I was half listening to his narration of the events and I thought I heard him say that they fell into the canyon. I asked him if he said "canyon" and he said "No, they fell into the GRAND Canyon". Grand Canyon?? What does a two year know about the Grand Canyon? We were looking at construction vehicles on the road the other day, and I said "Oh, look at that digger" and he said, "No, mommy that's a front wheel loader." What?


           His ENTHUSIASM. Even though Connor has so much and so many people who love him, I am so proud to say that he is not spoiled. He is still thankful and enthusiastic about every little gift and treat he gets. I have known kids in the past that have so much/get to do so much that nothing is exciting anymore. I don't want my kids to get like that. I want even McDonald's to be a treat, not a weekly occurance. Everytime we take Connor somewhere special (the zoo, apple orchard, a different park), he will say things like "I had a special day", or "I had really so much fun!". And he'll talk about it and remember it for weeks. Give the kid an ice cream sandwich and he squeals with excitement! It's that enthusiasm for the most simple things that I don't want him to lose. I don't want him to grow up!

         His INTELLIGENCE. I am very proud of the fact that Connor knows so much. He has just always had an interest in letters and numbers. He recognized every letter in the alphabet and numbers 1-9 by the time he was 18 months. He now also knows the sounds that most of the letters make and can count to 13. He knows about 10 colors and many shapes. I could brag for days about how smart he is, but I am most proud that he has common sense. He doesn't do stupid things like shove stuff up his nose or chew on things. He has always been cautious, not putting himself into dangerous situations very often. He amazes me every day.

         His IMAGINATION. He has lately decided that every member of the family is a Lion King character. (Connor is Simba, Mike is Mufasa, I am Timone (for some reason), Bryce is Zazu, and Bauer is Pumba). At first it was just a cute thing between Simba and Mufasa, but it has been escalating and continuing on for a couple weeks now. I haven't been called "mama" for at least a week (unless he slips--but then he quickly corrects himself). In the elevator at the Children's Museum the other day, a woman asked him if he was excited. He responded "Yes, yes I am! My name is Simba". Last night when it was time for bed he said "Timone, you put Zazu to bed so Mufasa can come lay by me." He says it like it's just completely normal--like those are our real names. We get a little worried sometimes, but I know he won't be calling us that when he's 16 years old :) 


         I want to just bottle this up. I wish we could have a hidden camera to record him so I can always remember. When he was six months old, I wanted to freeze him and now I'm so glad I couldn't because I would have missed so much. I'm sure a few months from now, I'll be glad again, but I can't imagine much topping how he is at this moment. I am so thankful that he is healthy and will grow up, but I'm just really sentimental right now with his birthday coming up.






      Take care! xoxo, Julie



Thursday, September 27, 2012

5 Years!


Tomorrow is our fifth wedding anniversary. Our big day was perfect. The two days leading up the wedding were rainy, and the morning after the wedding we woke up to sleet--but the wedding day was PERFECT--mid-70s and sunny. I really think God sent that weather to show his approval :) I couldn't ask for anything more. Our families and friends were all in the same place, everything ran smoothly, and I got to marry this handsome man.


 A man who....



...makes me feel beautiful every day...



....does what's best for his family...



....calms me down when I'm anxious or being unreasonable (a full time job in itself)....



.....spoils me any chance he gets...


....who, just the other day, after being up all night with a diaper blow out and two kids who wouldn't sleep while I slept blissfully unaware in the next room, said " I really love being a dad"...


.....and who is a serious contender for the "best dad in the world" award.

 I am so lucky. It's been a crazy, busy five years. It seems like yesterday and a lifetime ago all at the same time. I'm so happy I'm on this adventure with such a great man. Love you, Mikey!

Tuesday, September 18, 2012

So Thankful!!

Last Saturday, our little family received the greatest outpouring of love and support, and for that I am so thankful. Shortly after Bryce was born, my sister-in-law asked Mike if it would be okay to hold a beer bust in Bryce's name. I think the original plan was to donate the money to a Down syndrome organization. It suddenly turned into a benefit to help us out with our medical bills (having a baby in the hospital for 24 days is not cheap--even with good insurance!). Before I knew it, it was a big affair with a silent auction, raffles, all you can drink beer, a bags tournament, a band....I couldn't believe it! Actually, I felt really guilty because there are families whose children are actually sick who I felt deserve it more than us. It is really hard to accept help like that, but I had to surrender to the fact that people just really want to help us out. It's just so humbling.

One of the things I was most looking forward to was seeing who was going to show up. Thanks to facebook, we had some idea of who was coming, but I knew that word was spreading in other ways too. I was so surprised by the number of strangers (friends of friends, co-workers of family, etc.) that showed up. I also saw some people I haven't seen in YEARS, loyal friends, co-workers and family members. There were even a few members of the Down syndrome community there. A woman from Special Olympics had seen the flyer with Bryce's picture on it and decided she had to come. She brought a friend and invited a few other people. Both she and another gentlemen each had children with Down syndrome who have unfortunately passed away. It again made me feel so fortunate that Bryce has a good heart and is so far very healthy. They both just sung praises about their children and gave us so much hope. A young woman with Down syndrome and her mother also came to "welcome us to the club".  It was touching and made us feel so welcome.

The first thing that struck me was the sheer number of silent auction items that were donated. I walked those two long tables twice and still don't know if I saw all the items. Thank you so much to everyone who donated and bid on those items. There are so many great people out there.

I have been reading a lot of stories written by parents of children with Down syndrome. It is shocking to me that even 10 years ago (maybe it's still happening, I don't know), doctors, nurses, family members, etc. would just assume you would abort or abandon babies with Down syndrome. We have received nothing but absolute love and support from everyone--I can't believe how far society has come in accepting people who are 'different'. It gives me hope that Bryce won't experience as much hurt and discrimination as I sometimes fear he will. Maybe by the time he's old enough to work there will be very few doors closed to him.He is certainly very loved...our biggest problem will probably be making sure he isn't spoiled rotten.

I need to give the biggest thanks of all to my in-laws for all the hard work they put into the benefit. Mike's whole extended family was responsible for putting it all together, and some of my family members donated and helped at the event. Mike and I are the luckiest couple to have the families we have.

I was absolutely horrible about taking pictures (and I swore I was going to do so well!), but here are a few.



Okay, this was before the benefit, but it's just cute, so I put it up :)

Silent Auction



List of all the donors for the silent auction




Thanks to everyone for their love and support! Unbelievable!

xoxo, Julie

Tuesday, September 11, 2012

Adjustments

Hi Friends,

    We've been going through a lot of adjustments the past six weeks. Adjusting to having a newborn, adjusting to being a family of four, adjusting to losing my teaching income, adjusting to being a stay-at-home mom (for me), adjusting to sharing the spotlight (for Connor), adjusting to having a hormonal crazy wife (for Mikey :), and adjusting to having a son that is a little different than we anticipated.

    Tomorrow is Bryce's due date. My pregnancy was so horrible that I can't even imagine still being pregnant right now. I was thinking about the fact that had he not been born early, we would still be oblivious about his 'condition'. We would still be anticipating the birth of our "perfect" little boy. We would have no idea about the shock and sadness we were about to experience. Man, that sucked. I am so glad we are not there right now. I'm so glad we are six weeks beyond that. I am so glad we have already been through it and can say we're okay now. I can't even tell you how glad I am. I keep thinking back to that day in the delivery room and I would never want to be there again.

    Even though we have adjusted to the fact that Bryce has Down syndrome, at times I think I am in denial. Right now, Bryce is very much a "normal" newborn. He sleeps, eats, poops, and snuggles, just like any other baby. He is actually ahead of where his big brother was at this age. Considering he is still supposed to be in the womb, I think it's pretty impressive that he is starting to coo occasionally, is on the verge of smiling, lifts his head, and has even rolled over four times. I am so proud of how well he is doing, but at times I think it adds to my denial. It's hard to differentiate between denial and hope/determination. I don't want to lower my expectations for Bryce, but I need to be realistic at the same time. Most babies with Downs are barely crawling by the time they are a year old. Just because Bryce rolled over at three weeks doesn't mean he's some kind of exception to the rule, but the mama bear in me wants to think he is. The mama bear in me wants to say, "Oh yeah, look at what he can do! You can take your lower expectations and shove them!" Does that mean I'm in denial? I don't know. I'm probably setting myself up for disappointment, but I don't ever want Bryce to think he can't do something just because he has an extra chromosome. When we were still in the hospital, one of the NNPs told me that we could probably expect to be out of there before Bryce's due date, but not before he was 37 weeks (we were still 2 weeks away at that point). I got so upset because I felt like people were going to be telling him his whole life what he could and couldn't do. She didn't mean any harm--and she ended up being right, but it was part of my journey. It was the first time I had to face that idea of being realistic while still hoping for the best.

   It is natural for parents to want the absolute best for their kids. We don't ever want them to feel pain or disappointment. We want everyone in the world to see how wonderful they are. I think sometimes about all the hard times Bryce has ahead of him and I feel so guilty. What did he do to "deserve" this? I think about his frustration when he starts talking and we can't understand him. I think about how hard it will be to explain to him why his brother can get his drivers' license and he can't. I don't want him to have to go through those things. I just want him to have a charmed life.

   While I obviously haven't figured this all out, I can say that we are adjusting. There hasn't been a day in six weeks that I haven't thought about Down syndrome, but there have been plenty of days lately that I haven't cried about it (yay!). We'll get there. Thanks for the continued thoughts and prayers. Take care!

Julie

P.S. Many people have asked how Connor is adjusting. He is doing really well! He doesn't pay much attention to Bryce, but there isn't any resentment. He is such a good boy. He doesn't like it when Bryce cries ("It's okay, Brycey...don't cry", "It's going to be okay Brycey"), and we've even gotten him to give the baby hugs and kisses. He is the sweetest boy around!

Tuesday, August 28, 2012

Eyes



In those first painful 36 hours after Bryce was born and diagnosed with Downs, his eyes brought me a lot of pain. It is usually such a rare treat when your newborn has his eyes open, but with Bryce it was different.  If his eyes were closed, and I didn't look too carefully at his neck fold or short arms, I could try and forget the painful truth. But his eyes were a dead giveaway....he had Down syndrome.

Now that the pain has lessened, his eyes are one of my favorite things about him. Now, his two or three hours of wakefulness is my favorite part of the day. The irises of his eyes are so big, they almost look like puppy dog eyes--very little white around the edges. They are never still--he is always looking around, curious about this new world. There is something about those tell-tale, slanted eyes that just look happy. When I look at his eyes, he seems older than 4 weeks. They look like he could break out into a smile at any minute.

I know that those eyes will continue to be a dead giveaway. When people see him, they will know. I worry about that. I don't want people judging him, staring at him, teasing him. But, when I look at them, I see that they are bright and beautiful. I see that they aren't so different from the rest of the family--Mike and I both have almond shaped eyes too. They are beautiful--just look at them!





 I already wonder what is going on behind them, and hope with all my heart that he will have the ability to tell me someday.

Saturday, August 18, 2012

The Bitter Part of Bittersweet

    July 31st was a bittersweet day. Honestly, it was about 5% sweet and 95% bitter. It was the day our son, Bryce, was born. I feel so horrible already for saying that. This post will be full of things I feel guilty about, but I'm a painfully honest person. I know there are people who read this blog who don't know me. If you are here to judge or criticize, please don't continue reading. As of a month ago, I probably would have been appalled to read some of the things I will write...but I hadn't walked in these shoes yet.

     As explained in my early post, Bryce's labor and delivery was a whirlwind. I was so ready to not be pregnant anymore. When he was born and they placed him on my chest, it was one of my happiest moments. The day your child is born is supposed to be that way. He was so nice and big for being a preemie, and he had that beautiful head full of dark hair. He was crying and healthy enough for them to let us hold him for a while and take some pictures before whisking him away to the nursery. During that time, I couldn't see him very well, because he was right under my chin. Everyone said he was beautiful, but I just remember noticing his dark hair and how little his hands were. I didn't think he looked anything like his brother. I just found out recently that Mike suspected something was wrong right away, and I feel bad that he never had those few moments of ignorant bliss that I had.

     After a few minutes, they took him to the nursery and Mike was able to go along. I started looking through the pictures we had just taken on my camera. In a couple of the pictures, I noticed that it kind of looked like he had Down syndrome, but I shrugged it off, thinking that all newborns are kind of funny looking. It didn't seem to me like anyone had been concerned, and I had been monitored so closely....

     When Mike came back into the room a little while later, he asked me if I thought it looked like he had Downs. I again dismissed it, but could tell Mike (who had seen him a lot more than me) was worried.  Shortly thereafter, the NNP came in and told us that our son was healthy and beautiful (part of that sweet 5%)....and that she suspected he had Down syndrome (start the bitter 95%). My world stopped spinning. The whole high of  bringing a child into this world came crashing down. I couldn't tell you what was said after that, but in my memory, it seemed like she dropped a bomb and then went running from the room to save herself, leaving Mike and I to "grieve" the child we thought we were going to have.

     I also instantly and selfishly grieved the life I thought we would have. We had a "handicapped" child. He would live with us forever. There goes any dreams of having an empty nest and enjoying retirement. People will stare at us in public. Connor won't get to have a "normal" brother. Even though I now feel guilty for thinking these things instead of instantly loving my child unconditionally, they are legitimate fears and ones that may or may not actually happen. Our lives went from path A to path B without our knowledge or permission. How could we NOT grieve?

     Much of the rest of that day is a blur. I know I cried a lot, but I also know I pretended everything was okay a lot too. When I went to hold my son in the nursery, I didn't recognize him as my son. All I saw was the face of someone with Down syndrome. I am so ashamed to say it, but it wasn't really love at first sight like it's supposed to be. He scared me. He didn't look like Connor. He didn't look like me or like Mike. He looked like a kid with Down syndrome. But, I continued to go into the nursery, hug him, kiss him, show him off to his grandparents, and pretended to be so happy and proud.

He LOVES his baths!
    Luckily, the reason I can admit to those feelings now, is because they are no longer the case. I AM completely in love with him. I rarely even see the Down syndrome in him anymore. He DOES look like Mike. He has the same mouth and chin as Connor. He IS my son, and I AM proud of him. A lot of it was shock, a lot of it was fear of the unknown. In the two weeks since Bryce was born, I have come to accept the feelings  I had (and sometimes still have) as normal. I have read blogs and stories of other parents of children with Down syndrome and they very much echo my own story. The feelings of grief are healthy and normal. I wasn't grieving the life of my child, I was grieving the expectations I had for my child.
How could I NOT  be in love??

     Even though three weeks ago I was completely unaware of what my life was about to become, I already can't imagine it being any different. I can't imagine what life would be right now had Bryce been born without that extra 21st chromosome. Do I wish he would have been? Yes, of course I do. But that's who he is, and I love him--he is my son, the one I was meant to have.

    In the days since the grief and shock have lessened (not disappeared...), I have even become excited to raise Bryce and see what he can do. I have been able to see some positives in the situation. There is a large community of people we will meet. Not a club we wanted to join, but one we are a part of nonetheless. I believe Connor will be a better person--more loving, patient, and accepting of others. I know that he will be such a good brother. I remember in the horrible, dark moments after we found out, I kept thinking about how Connor will just see him as his brother--he won't know there is anything wrong with him. Eventually, yes, we will have to explain it to him somehow, but I was envious of the fact that Connor would just look at him and see the baby brother we'd been talking about, not the face of Down syndrome that I saw.


    I am so lucky to have a partner like I have. Things like this have to be exceptionally hard for men, but my man stepped up to the plate and accepted Bryce even before I did. He is so full of love, and me and these boys are blessed beyond belief to have him. The road ahead of us is bumpy, long, and will take many unexpected twists and turns. We don't know how 'severe' Bryce's Downs will be. We don't know what he will be capable of...but do we know that for any of our children when they are two weeks old? What we do know is that he appears to be healthy right NOW. We do know that we will do everything in our power for him to exceed expectations. We do know that he is a sweet, snuggly, adorable baby who needs us. When he gets home, our lives will be filled with appointments, assessments, meetings with OTs, PTs, speech therapists, doctors, etc. But it will also be filled with love.

So Blessed!
   

Tuesday, August 7, 2012

Bryce's Birth Story

         Whew, it's been quite a week. Our little sweetheart is one week old today. Our life is pretty nuts right now. We are, unfortunately, experienced in the Level II nursery...Bryce is camped out in the same spot that Connor was 2 1/2 years ago. My life is broken down into 3 hour segments.....feed Bryce, pump, wash the pump, deliver the milk, pass time for an hour, repeat. In the middle of all that, I am also trying to be a wife and a mother to Connor as well. It is not easy. I'm exhausted. I want Bryce out of here so we can be a family. I don't want to choose between my boys any more...but I have a feeling we'll be doing it for a while longer.

          As many of you readers know, we received a shock when, about 30 minutes after delivery, we received the news that our baby most likely had Down Syndrome. We had no clue. I will save this part of the story for another post. That post is going to take some time, thought, and tears. I think I can share his birth story, though.

        On Monday, July 30th, I had a doctor's appointment. I was about two and a half centimeters dilated, and was feeling a little nauseous. Even though I wasn't having many contractions that morning, I kinda had a feeling it was coming soon. My goal had always been to make it at least until August 1st, when I'd be 34 weeks. That evening, my contractions started getting more frequent and painful. I'd been to the hospital quite a few times with false alarms, so I didn't go in that night. My contractions were strong, but still not regular (they didn't get regular with Connor until late in the labor process either). I took one of the pills I was on for contractions and went to bed. I actually slept about 4 hours, but then I woke up at 3:30 in a lot of pain. Finally at 5:00 am, I decided to go in. I still wasn't convinced it was real (for some reason), so Mike did not go with me. We didn't want to wake/do anything with Connor until we knew if it was real. By the time I got checked in at the hospital, I was in excruciating pain. If this wasn't real labor, there was something majorly wrong with me :)

        They finally checked my cervix at about 5:45 and the nurse went to get a second opinion. She probably couldn't believe I was already dilated 5 cm....but I was. I called Mike to arrange something for Connor, and they moved me to a delivery room. Time is a little fuzzy, but as I waited for Mike to get there, I labored hard. There is a wonderful nurse named Amy (who had been one of the people with me during one of my false alarms) who just came in to sit with me, since I was an orphan mom with no husband there :) My mom also arrived to be with me. By probably 7:30 I was up to 9 cm and really feeling like I had to push. They gave me a dose of medicine to slow my labor until Mike and the anesthesiologist could get there. They also gave me a dose of narcotics that took the edge off. I was literally holding the baby in at that point. The anesthesiologist gave me an intrathecal (a shot that goes into the spinal fluid that somewhat numbs/eases the pain for about 2 hours), and then we had to wait for my doctor to get out of a c-section. Mike had also arrived by this point. It was seriously crazy...I could have delivered probably 45-60 minutes before I did. They just made me comfortable and then I had to wait. Finally, about 8:20 or so I was feeling the need to push again. My doctor finally arrived, broke my water, and 3 contractions later, Bryce James was born at 8:40 am. I wanted him out so badly, I pushed like a mad woman :) It was such a whirlwind. 4 hours earlier I didn't even know if I should go to the hospital!

         When you  have a preemie, you don't know if you'll be able to hold them right away or not. With Connor, the doctor literally cut the cord and instantly handed him off to the NNP (neonatal nurse practitioner). My doctor delivered Bryce and told me she would put him on my tummy right away like everyone else gets to do. Mike was even able to cut the cord (which I didn't discover until later). The NNP checked him out and then let us hold him for probably 5-10 minutes, which was really nice. They then took him to the nursery, and Mike was able to follow him down there. It was shortly after this that we saw some things that made us think of Downs, and the NNP came in to tell us she was suspicious as well--again, there will be a blog about this sometime soon.

         We were so happy to have our boy here, and I was happy to not be pregnant anymore! He is so chubby for a preemie--6 lb. 3oz. and has a head full of dark hair. Our first child was 4 lbs, long and skinny with fair hair, so he just looked so different! It would take me a day or two to even recognize Bryce as my child, but now I even see some resemblances between him and Connor. I am LOVING him to pieces, and really want him out of the hospital. His only goal is having the stamina to eat on his own. He does know HOW to nurse, but drifts off to sleep after about 5 minutes. I have been hesitant to try a bottle because I am afraid I'll give up on nursing just to get him out of here, but I will probably try soon. At the rate we're going, we'll be here awhile if I only nurse. It is just too hard splitting my time and "choosing" between my boys. I also just feel weird at home because our family is not complete without Bryce there. A nurse pretty much confirmed he'd get out of here sooner if he takes a bottle, so we'll see. I will still pump and give him breast milk as long as I can, but this will be difficult with Connor at home. It is a painful and time consuming feat. As long as I stay determined to keep trying to get him to nurse, we may be able to get out of here on a bottle and he can nurse more when he gets stronger. We'll see!

         So, there is the story of how our little man came into the world. It was hard to imagine loving another one as much as Connor, but he of course has completely stolen our hearts.


          Take care!  Julie

        


Wednesday, July 25, 2012

How far along? 33 Weeks (6th week of modified bed rest!)

Maternity clothes? Um, yeah.

Sleep:It's getting pretty uncomfortable, especially after laying around all day. I also have been waking up with terrible contractions about 3:00 every morning.

Miss Anything? Playing with my boy, keeping the house clean, cooking--all the things I normally complain about having to do :)

Movement:Yes, although you can tell he is getting crowded in there. He likes to hang out under my ribs, but at the same time, his head is so low I feel it was down there too. Pretty uncomfortable.

 Cravings: Nothing in particular, but I've been loving all the fresh fruit/berries that are out right now. I love summer!

Gender: Boy. Still no name. I think I know his name, and Mike has a favorite, but they aren't the same. I guess we'll have to see him first.

Labor Signs: I have been at the hospital about 4 times in the last month because of my contractions. I'm "supposed" to go in every time I have more than 4 in an hour, but I'd be there every hour of every day, so I save it for when they are regular or feel "different". For those of you who know what this means....My cervix is still closed and 1 cm long. I am 80% effaced and his head is at -1 station. He's RIGHT there, and I feel it! Could be worse, but I'm thinking there's no way I'll go more than another week or two (just watch me go full term after all this). CRAZY to think of actually having another baby and I'm starting to remember how much labor sucks, so it's getting a little nerve wracking!


I did end up opting to get the steroid shots to develop the baby's lungs, and he's already about 5 1/2 pounds, so I'm much more comfortable with the idea of him coming early. I just need to make it to 34 weeks so I can deliver at St.Francis. I love that place, and it's only a mile from home!

Symptoms: Contractions, tired from being so inactive, still pain under my rib cage, but we're not sure what it is. They did an ultrasound and didn't see any gall stones or liver problems, which was great news! It still hurts, though, especially when he kicks under there.

Belly Button in or out? In

Wedding rings on or off? With the humidity being so high, I've most just been wearing my thin band, because if I wear all three rings it feels pretty tight.

Happy or Moody most of the time: Scared, frustrated, crying every day.

Looking forward to:  Going out to a nice dinner with my hubby on Saturday to celebrate my birthday!

Thanks for continued thoughts and prayers! Every day this baby stays put is a blessing!

Sunday, July 8, 2012

30 weeks

How far along? 30 weeks! (Starting week 3 of modified bed rest)

Maternity clothes? Of course. I don't even fit in most of my pjs and t-shirts anymore. Last pregnancy I fit in them the whole time :( I refuse to buy maternity jammies, though, so I wear the pants that fit and some of Mike's boxers and t-shirts.

Sleep:Pretty well, just really achy in the morning, since I lay around most of the day AND night.

Miss Anything? Taking walks, being able to do whatever I want, whenever I want to do it, not being stressed out and worried, etc. I also miss working, believe it or not....or I guess just having SOMETHING on the schedule for the next day, other than laying around.

Movement:Yes, this one is a spaz. The only time he's remotely quiet is in the mornings. I'm afraid we'll have our hands full with this one, and my brother assured me that there is no possible way I will be blessed with another child as mellow as Connor :) 

Hugs for his little brother!
Huge.
Such a sweet boy


 Cravings: I haven't really had any particular thing I've craved during this pregnancy.

Gender: Boy. He's nameless, though. We just don't have any names that we're both crazy about. He'll probably be a week old before he is named :(

Labor Signs: Tons of contractions. I have been on modified bed rest since June 25th, because I have so many contractions, my cervix is shortening, and I had a positive fFn test at 28 weeks. I am also on Nifedipine, a drug that is supposed to slow contractions. If I have more than 4 contractions in an hour, I am supposed to go in the Labor and Delivery to be monitored. If I did that, I would be there EVERY night. I did go last Sunday night because the contractions were somewhat regular (about every 10 minutes). Of course, in the hour I was there, no contractions registered on the monitor, so I was sent home. I was there again on Friday morning because I felt a lot of pelvic pressure and it felt like the baby had dropped already. Good news, though...they did another fFn test, and it was negative this time. They also did another ultrasound to check my cervical length, and it hadn't shortened in the 12 days since it was last checked. This reassured me that all those contractions are not necessarily productive, and that the modified bed rest is working (as miserable as it is).

Symptoms: Contractions, tired from being so inactive, throbbing pain under my ribs (probably my gall bladder, but this has gotten better since everything dropped lower a few days ago).  

Belly Button in or out? In

Wedding rings on or off?With the humidity being so high, I've most just been wearing my thin band, because if I wear all three rings it feels pretty tight.

Happy or Moody most of the time: Really emotional, feeling like I can't do the simplest things....trying to make myself rest, but fighting guilt for not taking care of Connor like I should and feeling bad that Mike has to do so much. I am also always in fear that the baby will be born too soon....I for once am wishing my summer away...I just want it to be the beginning of August so I'll be 34 weeks and much less afraid.

Looking forward to: Another appointment and ultrasound on Tuesday (I wish I could get checked every day, just for my own sanity).


Thanks for continued thoughts and prayers! Every day this baby stays put is a blessing!

Tuesday, June 26, 2012

Rollercoaster of a Day.....

Hi Friends--
   Well, I've had a rollercoaster of a day the last 36 hours. I was so excited to start my summer vacation on Monday and it was a beautiful day! I had a doctor's appointment in the morning. At this point, the doctor wants to give me an Ffn test every two weeks. This tests for a protein that serves as a 'glue' to hold the baby into the uterus. If the protein is found outside of the cervix, it means the 'glue' may be disintegrating. If the test is negative, there is essentially no chance you'll deliver in the next 2 weeks. Last time I had the test, it was negative. Yesterday's test, however, was positive. Unfortunately, a positive test doesn't give any CERTAIN answers. They have estimated that it means you may have a 25% chance of delivering in the next two weeks....but it could mean nothing as well. Considering my history and the number of contractions I've been having, my doctor called and said she wanted me on bed rest until I could get in for an ultrasound to check my cervical length.

    I did not handle this news well. I pretty much cried for all of my waking hours from 5:30 last night until noon today. I worried about the baby, of course, but I also worried about not being able to take care of Connor, how much Mike would have to do for me, not being able to work and make money, not being able to take care of the house, not being able to prepare the nursery, etc. I pretty much worried about everything.

   Luckily, they not only fit me in for an ultrasound today, but my perinatologist happened to be at the Shakopee clinic today, so I was able to talk to her. I like my regular OB, but I just really trust the perinatologist's opinion on these matters. We got some semi-good news. My cervix was still about 2 cm long...shorter but not alarming yet. It is also still closed on the inside. She informed me that I don't officially have be on bed rest, but I need to take it easy. No working at Cub--I have to be on my feet the whole time I'm there. She said I could have Connor home with me, but I need to listen to my body and if I am having a lot of contractions, I need to call in reinforcements. I am planning on still sending him to daycare one day a week, even if I'm not working, and he can still go to my mom's one day a week, so I'll have a couple totally restful days each week.

     I have a lot of trouble asking for help, so even today when I was on bed rest and Mike was home, I didn't rest like I should. I really need to put my guilt about Connor aside and focus on keeping this new baby safe. It's just hard to do when Connor's sweet voice is asking me to do something....he has been my whole world for two and half years, so it's hard to focus on the baby that isn't here yet. I know it's not fair to the baby, and I'm going to do my best. I just feel like I'm failing SOMEONE either way. It's hard to feel like I can't do what women are meant to do....stay pregnant for 40 weeks. It's a guilt complex I've had ever since Connor came early. I know it's unreasonable, but it's how I feel.

    Every week that I can keep this baby in is a success. I will be 29 weeks tomorrow. Even if I can make it 3-4 more weeks, we'll be in pretty good shape, but my goal all along has been to make it until August at least. It's going to be a long, stir-crazy month of July, but in the grand scheme of life, it's a short amount of time. I just want EVERYONE to remind me of this in another year and half when I think I want another baby :)

     Thanks everyone for your continued thoughts and prayers!

xoxo, Julie

P.S. Happy Birthday tomorrow to my wonderful husband! I am so lucky to have such a good partner to have a family with and to put up with me. I love you the whole world, Mikey!