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

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!

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.

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!

   

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

        

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!

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!