Tuesday, May 29, 2007

Getting Ready

So here we go, back to Boston. Tomorrow I am bringing Jamie to stay with my in-laws while we go down for Clare's pre-op on Thursday. They are going to join us at the hospital during Clare's cath, but we didn't want Jamie to have to sit through the 5-6 hours of pre-op as well (I wish we didn't have to go through it ourselves). I could go on and on about how much trepidation I feel about this whole procedure, but I won't. It's there. I keep reminding myself that in a few short days, it will all be over, and we will be back home again and enjoying our summer. Next week is another big week for us - Clare has her yearly Early Intervention evaluation with OT, PT, and an educator on Tuesday, then the Easter Seals Walk With Me is Thursday, and Friday we leave for my sister's wedding. We are all in the wedding party, so I promise that photos will be forthcoming! In a way, it will be nice to have Clare's cath behind us so we can enjoy the events of our jam-packed June. Well, I am not really looking forward to Clare's eval either. I have mixed feelings facing some of these things. On one hand, it will be good to hear how Clare is doing developmentally and this will be the beginning of the year-long process of transitioning Clare to preschool (oh my gosh!!). On the other hand, it won't be good to hear how Clare is doing developmentally - how behind she is, where she falls short, which IFSP goals she has not met. Plus Shawn is gone on business the beginning of next week, so I am running solo for Clare's eval, with Simon and Jamie to keep occupied. My favorite phrase - we'll see....

A photo of Clare in her AFO's. She dislikes them more and more. They force her feet flat on the ground, which she does not like. And I have to think they are very heavy on her tiny legs and feet, so it is more work for her to pick up her feet. Her shoes are supposed to come in this week, but even if they do, she won't be working with them until at least next week. Enjoy your break, Clare!

I had to also include these photos of enjoying our little swimming pool. Jamie is a fish and loves the water. He could be out there all day. This is the first year that Clare has enjoyed the pool as well. She won't go in any water that she deems too cold, but we have had some sweltering hot days this May. On these days, I fill up the pool in the morning, and after Clare's nap, it is almost bathwater warm - a temperature she is agreeable to. Then she, too, is a battle to remove from the pool. And this photo of Jamie is priceless. That's our boy - there is always some bad guy lurking out there just waiting for Super Jamie to catch. (Or, lately, it's been Ninja Turtle Jamie.)

Thursday, May 24, 2007

In Love

Simon at three weeks old
I know I am totally and absolutely biased,
but this baby is just too cute for words!

Okay, I had to add this photo that I just found. This is Jamie at one month old. (Simon is almost one month old - I cannot believe that already!) They really are clones!

Wednesday, May 23, 2007

Sooner Than Later

Clare received her AFO's this week. She was supposed to get them last week, but they were not ready. And her shoes to fit over the AFO's won't be ready until next week, so it has been a slow process. The braces are so much smaller and so much bigger than I expected. I was unaware at first that the braces would come up mid-calf. That way she has a good amount of ankle support. I thought they would be lower. At the same time, Clare's calves are not that big, so the braces themselves are very small! She is not crazy about wearing them, but we can see how much more support her ankles get. She wore them for half of her OT session on Tuesday, and her therapist commented on the difference in Clare's walking with them on and off. Clare continues to improve her cruising and is becoming more daring in letting go of a piece of furniture momentarily to get somewhere else. I know this is just the beginning of Clare walking, and it is exciting!

We heard from Children's Hospital today, and Clare's cath is scheduled for June 1. Sooner than expected. I assumed her cath would be mid-to-late June, not next Friday. Although part of me is glad the cath is sooner (just to get it over with), another part of me hates that it is next week. Once again, we are left scrambling to take care of all the details in a few short days. Plus this is a very busy month for us - immediately after we get home from Clare's cath, Shawn leaves for Philadelphia for a few days on business. He gets home, then we take off for my sister's wedding for a few days. Then the next weekend is Simon's Baptism and we are planning a big get-together for that. So it is one thing after another. On top of that, it is never comforting to hear the hospital tell you that the cardiologists want Clare in as soon as possible. What does that mean?? Okay, I know what it means, but I don't like to think about it. So Clare goes in next Thursday for pre-op, then Friday is her cath. I am praying, praying, praying that Clare does not need more stents. I know the two stents she has already in her main pulmonary arteries are working wonders in keeping those big arteries open. In Clare's last cath, she narrowly missed having another stent placed in a distal vessel thanks to the amazing skill of her doctor. I hope Clare is as blessed this time - no stents means no ICU stay and an easier recovery. She will have the same cardiologist performing this cath, and he is the Chief Cardiologist at Children's, so she is in good hands. It has just been so long since we've been through the routine, that every little detail is making me nervous.

My Boys

When I was pregnant with Jamie, I wanted a girl (this was before we knew the gender). I grew up with two sisters and had a close relationship with my mother, and I really, really, really wanted a girl. Once Jamie was born, however, I couldn't imagine having a girl. I loved having a boy in a way that I would never have predicted. When I was pregnant with Clare, I wanted another boy (again, before we knew the gender). I wanted Jamie to have a brother. Shawn has always been close to his older brother, Brian, and I wanted to watch that same relationship grow between Jamie and a brother. I would think of all the great stories Shawn would tell about him and Brian playing superheroes, building snow forts, and other fun boy stuff (and I choose to ignore the stories involving fire extinguishers and pots of boiling water). I often tease Shawn about being a "Mama's boy" and cutting the apron strings. Seriously, though, I would be thrilled if Jamie (and Simon for that matter) have half the love, admiration, and respect for me that Shawn has for his mother. The fact that Shawn talks to his mom almost daily, pops in to visit when he is in the area and gets a chance (she lives in another state), and has such a close relationship with her is one of the things I love about Shawn and hope to see that in my own children. Of course, instead of another boy, Clare was born. Again, I didn't care that I had originally wanted a second boy. I couldn't imagine anyone but Clare being our second child. Having a girl is so precious in a way completely different from having a boy. I love the mother-daughter relationship that is evident even though Clare is only two years old.

Now I have my second boy, and we have brothers in our family. Watching Jamie and Simon together is already so cute. Jamie talks to Simon, and Simon seeks him out with his eyes and listens wide-eyed and serious. Jamie is ready with the spit-up cloth when Simon needs it. He is ready with the teddy bear he bought for Simon when he thinks Simon wants to play. He is ready with a pacifier when Simon is fussy. Jamie spent a day with Shawn's mom last week, and when he returned home, he couldn't get enough of Simon - hugs and kisses galore. He helps Shawn bathe Simon and got a thrill a couple nights ago when he fed Simon his first bottle. Since then, he has begged me multiple times over the past two days to give Simon another bottle. (I am nursing, so we're just slowly starting to introduce a bottle of pumped milk to Simon.) Jamie takes his role of the big brother seriously and is already looking out for his little brother. I hope he always does.

Sunday, May 20, 2007


Genes are a funny thing. It’s amazing to me that out of tens of thousands of genes, Clare is missing a handful and that is why she does not walk, has heart defects, and cries when you sing “Baa Baa Black Sheep” to her, to name a few.

There are days when I totally forget about Williams syndrome and just see Clare as Clare and we do what we do because it’s our life. Without really thinking about it, I catalog her daily medications in my mind and check them off as I dose them out. We go from playgroup to physical therapy without second thoughts, and my only concern is where to wedge a two-hour nap in. But then there are days when it’s not just second nature and everything in me screams against it. The days when Clare is overly frustrated that she cannot get the toy she wants because she cannot get to it. The days when I am bringing three kids to the doctor’s office and trying to keep them all happy while we wait forever for our 10-minute follow-up. The days when we hear that Clare’s heart is working too hard, and the doctors need to relieve some of that pressure or else. Those days have become fewer and farther between as Clare grows older, but they still come. And usually end up smacking me in the face because they are fewer and farther between and I don’t expect them to come creeping up on me (or charging down on me!). But somewhere, deep down inside, I really don’t know if I would change any of it. That is such a tough question. Because if I did, would Clare be who she is? Would she still have her ear-splitting grin? Would she lovingly touch our faces and babble to us, while doling out hugs and kisses? Would she charm the pants off everyone she meets? (In church last week, I was holding Clare, who was remarkably content. When I peeked over my shoulder, I discovered she was holding the hand of the middle-aged man in the pew behind us! Embarrassed, I whispered, “I’m sorry” and tried to disengage her hand. The man smiled and said, “Oh no, she is so sweet. It was a pleasure. She grabbed my hand and was content, so I didn’t let go.”) I don’t want to let all that go either just so Clare can be “normal.” In many ways, I want Clare to be special because she is such a blessing to us and others.

Genes are a funny thing. And we know that Clare is so much more than what Williams syndrome has given her. She has the same strawberry blond hair that her Auntie Chrissy has. She has a mix of Auntie Erin’s dark blue eyes and my and Grand Dad’s green-hazel eyes. She has her daddy’s curls. She has the look of my deceased grandmother. My mom stayed with us for a few days after Simon was born and, one night at dinner, Clare gave my mom such a look that my mom gasped and said, “For a minute, I saw Grandma Ruegg staring right at me.” She has an incredible personality - a sense of humor, goofy, clever, downright adorable. And I know she gets all that from me.

To us, this is the face of Williams syndrome. And we love her so much!

(Warning: the quality of the video is not the greatest since it was on VHS, so I then recorded watching my TV with the digital camera. Backwards way of doing things, but it worked!)

Friday, May 18, 2007

Still A Wonderful World...

even with the news that Clare needs to have another catheterization.

She had her sedated echo this morning. All went well with the actual echo and anesthesia process. Clare came home grumpy and sleepy, which is normal for her after waking up from anesthesia, and is now sleeping it off. Her aorta looks great and her overall blood pressures were good. However, the pressures on the right side of her heart were extremely high, which means that the pulmonary side of her heart is working overtime to get blood flow through. Which means that her pulmonary vessels have become quite narrowed again. So Clare needs to have those distal vessels balloon-dilated open again. Her cardiologist wants her in the cath lab within the next few weeks, so now we're waiting for Children's Hospital to call us to schedule that.

I am bummed for obvious reasons. I had a feeling this was coming and thought I was mentally prepared. But after the doctor went back into the recovery room, I burst into tears. I am still postpartum and hormonal - that must be it! I do feel blessed that it has been 14 months since Clare last had a cath. No one expected her to go this long. Plus she has been doing so well with her development, and I know being cath-free has made that happen faster. (She went on her first bike ride with Shawn and Jamie the other day. Although she was not a fan of her helmet, she loved the ride and was all smiles! You can see her grinning away at me between the spaces in her seat.) No cath is fun, but I think this one will be a whole new ballgame since Clare is older and much more aware of what's going on. Plus I won't be able to stay in the hospital with her this time because I need to be with my nursing baby and he won't be welcome as an overnight guest! So Shawn will be the hospital parent this trip. It's going to be a new experience for us all.

Wednesday, May 16, 2007

Tuesday, May 15, 2007

Mother's Day Post Late...Just Like a Guy!

S~ Okay, So had great intentions. I wanted to put together a nice picture show on here to surprise Teresa for Mother's Day. Of course, I could not figure out how to attach music, so I had to ask Teresa, which kind of ruins the surprise. Then I wanted to do a nice post in honor of her, and I am, it's just a little late. But as the saying goes, better late than never! I am so lucky to have Teresa in my life and even more lucky that she is the mother of my children. Everyone says that their wife is the best mom. (I mean we kind of have to say that right?) But, with Teresa, it is so true. I respect her so much for all that she does and all that she sacrifices for these kids. I know I could not do what she does in one day without pulling all my hair out. What I love about Teresa is her complete dedication to us as a family, no matter how hard it gets. I love this picture here because to me it shows Teresa in her true form, a loving mother standing by her children in their darkest hours.During the birth of Simon, I saw the strength that my wife possesses. The way she handled the pain and worked through each contraction was truly amazing. So I thank God for bringing Teresa into my life. I would not trade all the tough times for anything because it has brought me closer to my wonderful wife. Teresa, thank you! Thank you from our kids, and most of all, thank you from me! I thank you for being there with me, and more importantly giving me a home and a family that brings so much joy. Happy Belated Mother's Day post and I love you!

Monday, May 14, 2007

Baby Power

Life with Simon is amazing. I forgot how sweet it is having a newborn. That baby smell, soft skin, downy hair. Simon has his serious, wise-old-man newborn expression as he stares solemnly at us with big dark eyes. We are all in love with him! The power a baby has! (Especially between the hours of 2-4am, which is the time of day when Simon is wide awake and has no interest in sleep.)

Simon's power extends beyond that. He has forced me to slow down. Although the house may be a mess, laundry is spilling out of hampers, and I don't want to even talk about my kitchen floor, Simon requires that I sit down many times during the day and nurse him. I have a book on each floor of the house, so whenever Simon wants to eat, I am ready to take my ten minutes of reading and relaxing and not feel guilty about it. After all, a baby has to eat! Doing a lot of sitting, though, has also forced me to not jump right in and scoop up Clare whenever she wants me to. She is usually content to sit next to me on the couch while I nurse Simon or play at the coffee table, but sometimes she gets restless and wants to be elsewhere. So I have been encouraging her to go where she wants to on her own. Which is something we do frequently, but now I really am not getting up and picking her up. And she knows it. And what do you know, Clare has started cruising! She is slow and tentative, but she will walk along the entire length of the coffee table now. She will turn around and pivot herself from the coffee table to grab onto the couch and take a few steps to the couch (then I do this oh-so-elegant one-armed hauling movement to get her up on the couch with me). She is starting to walk only holding onto one of my hands, since my other one is usually occupied. Her confidence is growing!

Clare was supposed to get her AFO's today, but they were not ready, so she has an appointment next week. Now that she is gaining confidence and realizing the power of walking, I am hoping she will take off with the help of her braces. Clare also has her sedated echocardiogram at the end of this week. I am very nervous about this echo. Her last sedated echo was in November. I have a nagging feeling that this echo may not be good news. It has been 14 months since Clare's last cath, and post-cath, her doctor predicted 6-12 months before she needed another one. Clare has proved that wrong! I am praying she continues to prove them wrong!

Monday, May 07, 2007

Settling In

We are slowly settling in to some sort of routine... okay, not really, but we're working hard on getting there! Simon still does much of this throughout the day which is always a blessing in those first weeks at home.

I am amazed at how well both Jamie and Clare have taken to Simon. Jamie has been a big help - he loves to fetch things (most of the time) like pacifiers and blankets, as well as taking over jobs like putting the soap in the dishwasher and running it. He dusted the living room for me yesterday and rearranged all my picture frames to "make them look better." Jamie wants to be the one to put Simon to bed or carry him upstairs, but we're going to wait just a tad bit longer before we let him take over those duties!

Clare has also reacted better to Simon than we thought she would. Whenever she sees Simon, she says, "Baby" and constantly wants to pat his head and other body parts. At meals, she offers Simon her milk or a piece of food. For the most part, she has been so gentle with her new baby brother. I have only once had to tell her not to pat his head with her hard plastic Elmo figurine and she only honked Simon's nose one time so far. That's pretty good in my book! Clare is even doing better than we hoped with the whole not-hooked-to-Mommy's-hip thing. I am still not supposed to be picking Clare up or carrying her around, but we're breaking the rules a little for both our sakes. (I miss my attachment!)

Today is my first day solo with the kids - Shawn is home, but he is trying to stay out of our way for the most part and get some work done. Thankfully, Simon is my first baby who likes the sling. He is sound asleep in it right now as I catch up on all my e-mails. We took a family walk yesterday with Simon in the sling, Clare in the wagon, and Jamie on his new "big boy" bike. It worked out beautifully! We're going to venture out to the playground later today. I am unsure how it will go, but sometimes you just have to dive in headfirst.

Thursday, May 03, 2007

Into the world he comes...

S~So it is 5:00am and I am up, not with Simon, he is sound asleep, but with Clare. Doesn't she know we need our sleep??? So we got home yesterday early afternoon and are now trying to find our routine again. It's funny, but you would think after having two kids already this would be a lot easier, but it is still hard to get everything in order. Oh well, who needs order? So as promised, here are the dirty little details and some pictures as well.

Teresa and I went into the hospital on April 30th about 1:30 pm. Teresa had not been feeling well the last couple of days so we thought it was time. We went in and they checked her and she was in early stages of labor - she had dilated to about 2 cm and was 75% effaced. They started her on Pitocin and then about 6:30pm broke her water. Then things started to really get moving. Teresa and I really wanted a different kind of birth experience this time. For Jamie and Clare's births, it was a real social event with all our family present in the room until the pushing started then it was just the moms. As nice as that was, we were looking for something a little more quiet and relaxed. Teresa really wanted to go without any pain medication so the relaxation was going to be a big factor. So we had the lights down low and a lot of Josh Groban and George Winston coming out of the IPOD. She used the birthing ball at first and then as things started to intensify she did some laboring in the tub (something she wanted to do for both Jamie and Clare's births but never got the chance). About 10:30 she transitioned into hard labor, by 11:30 she really wanted to push but when the doctor checked her she was only about 7cm.

As a side note here I have to tell all of you how Teresa continues to amaze me and how proud I am of what she did. The amount of pain I saw her go through and how she was able to focus herself in between contractions, how she was able to handle the pain. She is a truly an amazing woman and I am so lucky to have her.

This is where things got intense, her need to push was still there however she was not yet fully dilated. For those of you who remember with Clare, she never fully dilated, and Clare was born when she was only about 7cm. She labored for another an hour and a half. Even though she told us after every contraction she didn't think she could do it any more when the next contraction came she was as focused as if it was the first. At about 1:00am she told us she needed to push. We were all getting a little nervous at this point because during every contraction we watched the heart rate drop from 140 (normal child heart rate) to down in the 90's then the 60's. Once we got the go ahead from the doctor to start pushing, Teresa was all business. In three good pushes Simon was out. The problem with his heart rate was caused by the umbilical cord wrapped around his neck.

So Simon Joseph is here and is wreaking havoc on our family but we couldn't be happier. Jamie just loves his little brother and it is so sweet to see him concerned for him when he cries, or go over and give him kisses upon kisses. It will be interesting to see how the two bond as they grow older. They might be spitting images of each other because Simon looks so much like Jamie.

We were really interested to see what Clare thought of the new baby. She is so attached to Teresa. We were really nervous that a jealousy factor would kick in. When she first met him she was more curious than anything else, what is that strange thing all bundled up??? When we brought him home she really warmed up to him. She calls him Baby and likes to pat him on the head. So I think she will be fine.

So we are now a party of five. It is a little strange, but really nice.

Tuesday, May 01, 2007

Let me introduce...

S~ Simon Joseph! Yes he is finally here! it has been a tiring few days so I will keep this short with the promise to spill all the dirty little details once we are home (and yes pictures as well). Simon came early this morning (1:14am Yikes!) after a long and difficult night of laboring. Boy am I tired (Just kidding!) My beautiful and strong wife was able to go completely natural with no pain medicine at all. I cannot tell you how proud I am of her strength. So our little peanut weighed in at 7 lbs 7 ozs and is 20 inches long. Currently everyone is doing well and looking forward to going home. We will post more soon, as soon as we get some sleep. Zzzzzzzzzzzzzzzz!