Sunday, June 24, 2007

Curiosity (almost) killed the cat

Oh the weekend we had. Picture this.... It's Saturday night at 6:00pm. My parents had just picked up Owen to take him for - wait for it - THE ENTIRE NIGHT!! Dan and I were free, free, free for 12 hours. We had big plans. Friends were coming over at 7:00pm to cook out, followed by some light bar hopping and then back to our house for a nightcap or two. Sounds like a fun filled evening correct?! Our cat Lilly had other plans for us. Around 6:15 I hear glass shattering in the dining room. I run out of the bathroom and see my huband holding our bleeding cat in his arms. Apparently Lilly managed to get her head caught in the base of our hurricane candle holder on our dining room table. She fell off the table, shattering the glass. Her head was still caught in the base so she was frantically trying to get her head out and proceeded to cut herself on the broken glass. I see her and completely freak out. I didn't realize how useless I am in a crisis until this happened. I'm trying to tye a towel as a tournaquet around a her. Yeah! That worked out really well for me! A bath towel doesn't quite get the pressure need to stop the bleeding on a 5 lb. cat's leg. Brilliant plan! We rushed her to the animal hospital and spent part of our "big night out" in a waiting room. Turns out she's fine. She has a laceration on her abdomen and on 2 of her paws, but nothing too serious. I'll tell you what is serious though - the 500 bucks that fun little adventure cost us! The animal hospital shows all owners estimates of care before they treat their pets. My husband looked at the bill, looked at me and then told he vet "A bullet only costs a dollar". He was kidding of course (kinda). We were able to go out and enjoy our night. We just left Lilly overnight at the vet! This is Owen and I on Sat morning. He was trying to help me clean. He didn't actually help to much however. He distracted me with his cuteness! This is Owen in the Bumbo his grandma bought him. His Grandma Merciez totally spoils him! There was no way I was paying $40 for a rubber chair that looks like a toilet without a hole. I do have to admit however, he does enjoy it!

Thursday, June 21, 2007

My Rolly Polly Owen. Milestone Alert!

He did it!! At exactly 18 weeks of age, Owen Christopher rolled over! I'm ecstatic that I actually got to see it! My big fear in going back to work was that I would miss the milestones. Luckily Owen is extremely aware of my need to see everything and does not do anything remarkable unless I am around. (I am fully aware of my delusional thinking but it gets me through the day).
It was Tuesday night and he rolled to his right from tummy to back. My mother and I praised him and clapped for him as if he had just figured out the formula for cold fusion. He seemed extremely proud of himself. Apparently he was pleased enough with his one amazing act and now has no motivation to prove himself again. In fact, he may have regressed in the past 2 days. Today we laid him down on the floor hoping that he would reenact the roll over for his father. Unfortunately, he seemed perfectly content to stare at the TV (which by the way is a whole other issue and will most definitley be delt with in a future post).
Regardless of this, he's a genius and is most certainly the 1st boy to roll over so soon (once again, aware of the delusions. Don't care). Yay Owen!

Tuesday, June 19, 2007

A Father's Day Ode to My Husband

I knew when I married him that Dan would be a good father. He's patient, relaxed, fair and loving. Since Owen's birth however, his transition into fatherhood has completely astounded me. There is something about the way he looks at Owen that I can't quite put my finger on. It is a mix of pure love and amusement - like Owen is the most fascinating creature who has ever lived. Dan is very dutiful. He will always do what needs to be done. I knew he would approach being a father the same way, but it's different than how I thought. He doesn't do what needs to be done because he has to but because he wants to. In the rare instances when Owen does get up in the middle of the night, Dan will get up with him simply so he can see his son. He washes bottles. He clips fingernails. He gives baths. By a string of bad luck on his part, Dan has pretty much exclusively become the poopy diaper changer.
Without a doubt, I know that Owen is the best thing that has ever happened to my husband. Seeing the man you love, fall in love with this precious thing that you have created is beyond words. Through everything that we have been through, Dan has been a pillar of stregnth. I don't really think he realizes it either. Lesser men may have let a diagnosis like Owen's effect their feelings for their children. If anything it has made Dan realize how much he loves him.
To all the other ladies, I apologize. I'm sure all your husbands are wonderful too, but I really think that I snagged the best one out there.

Friday, June 15, 2007

Bad Mommy...

I knew it would come. All mothers have told me that they have at least one "Oh my god I almost killed the kid" moment. Today was mine.
The plan was to take Owen for a walk. The stoller was in the car so I took Owen outside, got the stoller from the trunk and strapped him in. So there he is securely fastened into his stoller nice and cozy, wearing the perfect clothes for a walk. Clothes that would ensure that he wouldn't be to hot or too cold. I go to the drivers side door and use the remote to close the garage door. Problem is - I've left Owen by the trunk of the car. Problem is - Mommy did't put the brakes on the stoller. Problem is - Owen is now barreling into the street. I ran so fast you would have thought I was Linsday Lohan leaving the scene of an accident.
Now, we live in a subdivision and not on a busy road so there wasn't imminent danger from heavy traffic. HOWEVER, I of course ran down my mental list of all the awful things that could have happened as a result of my carelessness.
Owen of course, was none the wiser and proceeded to happily drool all over me when I picked him up.
Let this be a cautionary tale to all. Put the brakes on the stroller or you kid could get hit by a car!
The pictures I've included show Owen playing with all the wonderful toys I've bought him. I'm hoping I can trick you into thinking I'm a good mom.

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Wednesday, June 13, 2007

How is life measured?

Owen was 4 months old today. It's hard to believe that our rollercoaster ride began only 4 months and 6 days ago. It seems so very far away from the "normal" everyday family life that we lead. (I of course, use the term "normal" loosely as a homage to Tonya and Knoah who are currently dissecting that term on their blog What is Normal? ) Owen has been definitively diagnosed with Achondroplasia by the geneticists at U of M. For my husband and I, this diagnosis was relatively easy to take considering what we had faced a few months back. I can't help but think that perhaps God put us through all the drama in order in order to prepare us for our new life. Before Owen, I had never given much thought to a persons height and how it effects the world's perception of a person. Of course, everyone makes snap judgements of people. "He's 6'6. He must play basketball". "She's 5'2. She must be delicate." Beyond that, how will Owen's height effect the person he is?
I wish for Owen the same things that I wished for him before we found out he had achondroplasia . I want him to be a strong, happy, good person. I'm so curious to see what life is going to bring us. He's such a happy little guy right now. I hope he doesn't turn into one of those sullen teenagers whose answer to every question is "Fine." Although, I suppose that's inevitable.
There are a few things I hope to accomplish with this blog. I would like to provide hope for parents who have been given poor prenatal diagnosis as Grace did for me. The Roloffs have opened their doors and are shattering the stigmas associated with dwarfism. I too hope to provide some insight into the world of little people. Basically, I just need to chronicle my journey. It always helps me to get everything out and onto paper (or a computer screen in this case). I probably won't write everyday and it will most likely be very random thoughts. I can promise honesty. Please, please, please, leave a comment or a post if you want. I can't wait to meet more people like me!

Tuesday, June 12, 2007

Letter from April 10th, 2007

Hello everyone!
Owen will be 8 weeks on Tuesday and we just can’t believe how fast the time has gone. Owen is, of course, a genius and we are not just saying that because he is our son. He has hit all his developmental milestones and continues to surprise us with new skills everyday. He is smiling and cooing and just generally cute all of the time. Dan swears that he said “Dada” the other day. In addition to being a genius, Owen is also extremely good looking. He loves to look in the mirror and also appears to be quite pleased with his reflection.
I am the envy of all mothers because Owen is sleeping 6 1/2 to 7 hours a night and last night slept from 12:00am to 8:00am. We never imagined that we would get a full night sleep with a 2 month old!!

As for Dan and I, we are delighting in the joys of parenthood. We knew before we had him that we would love our son. We were however, completely unprepared for the sheer strength of that love. Although I don’t believe that our love for Owen would be any different had we not gone through our experience, I do think that it has given us a different perspective. Everyday with Owen is a day that we thought we would be mourning him. The camera that we thought would be empty is full of pictures. The baby book that we thought would never be open now records his firsts. We are so blessed to have him and not a day goes by that we aren’t thankful.

Now for the big question – what is in store for our son? When we left the hospital after Owen’s birth, the doctors suspected that Owen had a type of skeletal dysplasia called achondroplasia.
Achondroplasia is characterized by abnormal bone growth that results in short stature. However, because Owen’s arms and legs measured small but were still proportionally larger than most babies with this condition, the doctors could not make a definitive diagnosis. On Thursday we had a meeting with the geneticist from U of M, Dr. Vinod Misra. Dr. Misra told us that Owen does in fact have skeletal dysplasia. Still in question however, is what type of dysplasia and what it will mean for his future. Dr. Misra believes that Owen has - I’m going to throw in another big fancy medical word – hypochondroplasia.
Hypochondroplasia is an even milder form of skeletal dysplasia. It is basically “Diet Achondroplasia”. There are many of the same characteristics only in a less pronounce form. In fact, often hychondroplasia goes undiagnosed as it is often confused with plain old shortness. Dr. Misra is still hesitant to label Owen because there are characteristics of hypochondroplasia that he does not possess. His head is not significantly disproportioned to his body. It is slightly larger, but not in an obvious manner (we think it’s due to his large brain). Owen’s facial features are relatively normal where as children with this condition tend to have smaller, flatter faces with prodruding foreheads. There are however, traits of hychondroplasia he does possess such as shorter limbs, a depressed nasal bridge, a short rib cage and a large abdomen. Dr. Misra pointed out that even despite these traits, Owen looks perfectly normal (unless you are a geneticist).

Dan and I were relieved to hear what the Dr. Misra had to say. Owen will not be subject to many of the health risks associated with the more severe forms of skeletal dysplasia. As far as his heath is concerned, he is completely normal and should stay that way. He will most likely be delayed in his gross motor development but it won’t mean much in the long run. He will hit all of his physical milestones, just a little later than normal. Instead of walking at 12 months it may take him to 18 months. Looking at the silver lining, this just means that we have 6 more months to relax before we have to start chasing him around!

Owen was weighed and measured at U of M and comes in at 10 lbs, 12 oz and 21 inches long. This puts him in the lower percentiles but he’s still on the charts. Owen was X-rayed and a skeletal survey will be done in order to plot his proportions. The blood thirsty geneticists also needed more blood which turned out to be a huge trauma not just for Owen but for Dan and I as well. They had trouble getting blood and ended up poking Owen 5 or 6 times. He was not a happy camper! It was extremely tough for us to watch our little boy screaming in pain. He was completely exhausted after the whole experience and slept for the rest of the day. We spent almost 7 hours and the hospital and still didn’t end up with any solid answers. It seems that we are in a wait-and-see situation.

As far as we are concerned, Owen is a normal baby and the absolute light of our lives. There is big possibility that Owen will grow up to be in the normal range of height and that his condition will be indistinct. He will never be 6’5 but he probably wouldn’t have been anyways!
As for now, we are enrolling him in the Early On program to help keep his physical development on track. We will have to go back to U of M every year so that his progress can be monitored. For now, Dan and I are ready to put this all on a shelf for a while. We want to concentrate on getting back to life with out medical drama.

Owen’s future is wide open and like any parents, we are excited to watch him grow and learn. We will keep the pictures coming (you can’t escape the pictures) and I will continue to send updates every once in a while. Once more, I’d like to thank every single person for their support and prayers. If Owen should in fact be a little different because of his height, we have no worries that he will be loved any less. Everyone’s reaction has been nothing but positive. This gives Dan and I tremendous comfort. We love you all and thank you for helping us through these past few months!

Letter from Feb 17th, 2007

Hello Everyone!
It’s hard to find a place to begin. How can I possibly describe the miracle that has happened to us?

In the days following Owen’s diagnosis, Dan and I spent time preparing for the worst. We made arrangements to have our priest at the hospital, we discussed memorial service options & we looked into grief counseling. We also read all the books that Owen had received to my belly. We did however have some small hope that he may be OK. For that reason, Dan finished up the baby room and made sure to install the car seat.
Our hope was further strengthened when we found an amazing story on the internet. The story was about a little girl named Grace who had survived the same diagnosis that Owen had been given. Upon reading this article, I emailed Grace’s mother Sandi. Sandi called me the next day and we shared our stories. Sandi was told that Grace would die within 4 to 6 hours of birth due to lethal skeletal dysplasia. Grace was born screaming and crying and was given an APGAR score of 8 and 9 (10 being the best). She is now 4 years old and thriving. Sandi’s story kept our faith alive for the next couple of days.

As you can imagine, Tuesday morning was still quite difficult. We checked into the hospital confused and scared. Dan and I knew it would be either the best or worst day of our lives. The nurses and doctors did everything possible to make us feel comfortable and both our families were there to support us. Our priest was allowed in the operating room so that he could immediately perform a baptism. As soon as Owen was born, they showed him to me over the curtain and hurried off to an assessment room to examine him thoroughly. After a few minutes, the nurse practitioner informed me that Owen was crying loudly and seemed to be doing well so far. They had given him a little oxygen and would continue to update me. The subsequent updates were all positive. A quick X ray showed that his lungs appeared to be developed and he was breathing well. The nurse said he had some fluid in his lungs but that this was consistent with babies delivered by C section. By the time I was stitched up, they told me that Owen had an APGAR score of 8 or 9. I couldn’t help but think of Grace and it was then that we started to believe that he would live. Although the medical staff was still too cautious to say it, Owen appeared to be an 8 lb 1 oz miracle.

The next few days were a whirlwind. Owen was placed in the NICU for observation and testing. Our poor baby went through the works! X rays, blood work, an MRI, blood gas, lung tests, sleep tests, eye tests, hearing tests, and on and on. Pretty quickly it was determined that the only real problems that Owen was having were problems normally associated with C section deliveries. Dan and I were visited by a geneticist who said that they were still trying to figure out why Owen was diagnosed with lethal skeletal dysplasia and whether or not he still has a form of it. All of this and I was recovering from major surgery (thank godness for Percocet!). By Thursday, the only reason they were keeping him there was to finish testing. He was doing so well they were ready to release us that afternoon.

To say that the staff at U of M was wonderful would be the understatement of the year. Step by step, the doctors and nurses walked us through every procedure with compassion and understanding. Every staff member we came in contact with seem genuinely concerned for our families well being. We met people in those few days that we will never forget.

Owen may still have some problems that are yet to be determined, but for now he is simply our miracle. Despite the pain and heartache that we have endured, the things we have learned were worth it. We have become better parents, better partners, better sons and daughters, better friends and better people because of this experience. Every time we look into our son’s face we realize how lucky we are to have him.

We were simply amazed by the goodness in people. The way everyone pulled together for our son renders us absolutely speechless. We have no adequate words to thank everyone for their heartfelt support and encouragement. We have no doubt in our minds that the prayers said for our son kept him alive. We do not have enough lifetimes to express our gratitude Thank you so much to everyone and please come by to see Owen. We would love him to meet the people that saved his life.

Catherine, Dan and Owen

Letter from Feb 11th, 2007

As people have begun to find out about Owen, the outpouring of support has been overwhelming. Until you go through something like this, you could never know how much it truly helps to have people standing beside you. Every time we hear that someone wishes us well or that someone is praying for us – it makes us a little bit stronger.

There is nothing new to report, but I wanted to answer a few question that people have. The main question seems to be, “How was this not caught earlier?” As best as the doctors can tell, the discrepancy in the growth was not noticeable until after my 20 week ultrasound. As far as that ultrasound showed, everything was progressing normally. As for any other indicators, there was really nothing that could have been caught by a routine doctor visit. Even all the test they do, the strep B test, the cultures, the triple screen, would not have revealed that Owen has lethal skeletal dysplasia. It was however, the standard practice of measuring my belly every week that ultimately uncovered the problem before he was born. Between my 36th and 37th week my belly grew 3 centimeters – a substantial growth in pregnancy terms. For this reason, an ultrasound was ordered for my 38th week. At the time, I was thinking that this little guy was getting ready to make an early appearance. I now know that it was due to excess amniotic fluid, a sign that something was wrong.

We don’t blame our doctors for not catching this. I was not a high risk pregnancy, all my tests were normal, his heartbeat was always strong and he was constantly moving. There was nothing that could have indicated that a healthy 29 year old with no risk factors may be carrying a baby with lethal skeletal dysplasia. Even beyond that, there is nothing that could have been done had the condition had been caught.

Another big curiosity is about the disease itself. Skeletal dysplasia is a genetic disorder that was caused one of 2 ways. It was either the spontaneous alteration of a gene or a combination of 2 recessive genes that caused the disorder. At this point, the doctors do not know which category we fall into. Once Owen is born, they will do genetic testing on him as well as both Dan and I to determine what may have happened. Sounds a little like a science fiction movie doesn’t it? What the doctors at U of M did tell us was that the risk of us both having the recessive gene is low and that even if we did both have it, the risk of having another child with lethal skeletal dysplasia is very low. That being said, our faith that percentages are on our side has been somewhat shaken.

Skeletal dyplasia itself can also be divided up into 2 categories, lethal and non-lethal. Owen obviously has the lethal form. There are over 200 types of general skeletal dysplasia with only 9 of them being the lethal. There was a 1 in 10,000 chance that Owen would be born with this condition. Owen’s form of skeletal dysplasia effects the growth of bones and in particular the legs, arms and rib cage. In Owen’s case, his rib cage is what causes his condition to be so dire. The size of his chest cavity limited the growth of his lungs. He will not have the lung capacity to survive on his own outside the womb.

With all the grim statistics, we still have some hope. As I mentioned in my 1st email, the doctors said that Owen seemed to have more lung tissue than most babies with his condition. This means that they fully expect him to live for at least a few hours. We will spend all of that time loving him, holding him & taking pictures of his sweet face. Tuesday will be a very bittersweet day for Dan and I. We are very excited to finally meet the baby that we’ve so eagerly been awaiting but we will be incredibly sad to say goodbye to him. That being said, we are still praying for a miracle and hope that everyone who reads this will do the same. Once again, thank you so much for the beautiful words of encouragement. We will send pictures of Owen and more information after Tuesday.

We love you all!
Cat and Dan

Letter from Feb 9th, 2007

Hello everyone,
Dan and I would like to thank everyone for the support and prayers that we have received so far. We wanted to keep everyone updated on our situation. For those of you who haven’t heard, our life has taken a dramatic turn in the past 24 hours.

Our ultrasound on Thursday showed some abnormalities in Owen’s growth. Owen’s arms, legs and chest cavity were measuring smaller than they should have been at this stage in our pregnancy. We were referred to a perinatal specialist right inside the hospital who did another ultrasound. Owen was diagnosed with skeletal dysplasia. His head and abdomen are of a normal size but his limbs and chest cavity are smaller than they should be. In simple terms, half of his body was growing normally and the other half was not. The specialist told us that the diagnosis is lethal and Owen would most likely not live past a few hours. As you can imagine, our world came crashing down around us.

Because of the severity of the situation, the specialist referred us to U of M hospital because of their expertise in these sorts of prenatal abnormalities. We spent all day today at U of M verifying our situation and trying to understand what it means. They confirmed that Owen has skeletal dysplasia and that his little life will be short. Skeletal dysplasia is a genetic disease that has many different forms (they will know better after the birth what specific form he has). In Owen’s case, the size of his chest cavity did not allow his lungs to develop normally. In the womb, he doesn’t need his lungs to survive but once he is born they will not have the capacity to support his breathing for an extended period of time. As far as the doctors can tell, his lungs are not developed enough to support his body even with the help of a ventilator. From what we were told, skeletal dysplasia is a condition that was determined at conception and was not caused, nor could it have been prevented or fixed throughout the past 9 months. Basically, we hit the bad luck lottery.

We have scheduled a Caesarean section on Tuesday at U of M and we will need everyone’s support and prayers to get us through the rough road that lies ahead. Dan and I are obviously completely shattered by this unpredictable chain of events. We are however, thankful for the small blessings. The doctors are optimistic that Owen will live for at least few hours. We are thankful that we will get the chance to give him a lifetime of love in those few hours. We are thankful that he has not been in any pain up to this point. We are thankful that we did not find out until late in the pregnancy so that we were able to enjoy the entire experience of the miracle of life. We are thankful for all of prayers, support and love of our family and friends. We are thankful that we have each other.

I know that no one really knows what to do or say. Neither of us would know what to say to someone in this same situation. To be honest, at this point, we are really not sure what we need to hear besides “We are here for you”. As bad as it is now, we have some really tough times ahead. I know everyone is curious about what is happening and it’s actually cathartic to write about it so I will try to keep the updates coming. Thank you so much for the anticipated support.

Cat and Dan

Tuesday, June 5, 2007


Let me just start by saying how very strange this is. I never thought I would be a "blogger"! It never occured to me that there may be some interest in our day to day life until my friend and fellow blogger Renay suggested it. So here I am blogging away without the slightest idea where to start. Maybe I should just take it from the beginning.... The following are the letters that I wrote to friends and family chronicaling Owen's Journey. You will get an idea of what we were going through.