An Open Letter To My Daughter

My Dear Caroline,

It has been 12 weeks and 4 days since I last held you in my arms. When it was time for us to go, I literally felt like I had the wind knocked out of me as I handed you back to the nurse. I am not sure how long it was before I could take my next breath. It seemed like an eternity. 

We think about you often and Ali always asks me why you had to be an angel instead of her sister. I always tell her you are both an angel and her sister. Always. I thought time was supposed to heal all wounds--even a broken heart. I feel I have been thinking about you more recently as I have been dreading this week as today is your due date and Sunday is Mother's Day. I can't help but think I should be holding you in my arms and not in my heart.

On December 15 (the day the specialist told us he suspected you had Down syndrome) while driving in the car I heard Garth Brooks song "To Make You Feel My Love". And that is exactly how I felt at the time. I couldn't help but rub my belly to make sure you felt my love, regardless of our situation. I still feel the same way, and "There ain't nothing that I wouldn't do... to make you feel my love."

Natalie Babbitt wrote in "Tuck Everlasting", "You can't pick out the pieces you like and leave the rest. Being part of the whole thing, that's the blessing." So, thank you, Caroline, for being a blessing to me. 

Love always,

Your mama

Breakfast, Lunch and Hugs

Ok... so far with this blog I have been fairly quiet so I thought I would share a quick story that really brought a lot of joy in my heart. A few days ago I discovered a YouTube clip that hit home and brought me so much hope for the future. No it wasn't a clip about kitties or anything that has recently gone viral it was much better. In Albuquerque, NM there is a restaurant called Tim's Place. It is touted as the Happiest restaurant that servers breakfast, lunch and Hugs. On the outside, Tim's Place looks like any other strip mall restaurant but once you step in you are greeted by the owner and a big hug. The owner is named Tim Harris and Tim has Down syndrome. Actually Tim is the only person who is rocking the 21st chromosome that owns his own restaurant. The YouTube clip is very cute and it shows the passion and love that Tim has for his restaurant and for the customers that come in. Not only is Tim a restaurant owner he is also a Special Olympic Medalist...In fact Tim holds more medals then Michael Phelps.
The smiles that this young man has and the smile that he brings to people's faces warmed my heart and brought a tear to my eyes. After watching Tim follow his dream to owning his own restaurant I know that one day my daughter will be able to follow her dreams and do whatever her heart desires.
After watching this clip with Lauren I decided to Google Tim's Place and check out his website. Down at the bottom of the page there was a place to "Contact Us", so I thought why not. So I put in my information and sent a quick message on how much Tim has brought hope to my wife and I. And to let Tim know that he is an inspiration to my family. I clicked send and went to bed.
The next morning I was at work managing my own restaurant when my phone rang. I looked at the caller ID and it was a 505 area code. I thought to myself, "this is strange but I should probably answer it because it might be something in regards to some orders I placed for the restaurant". So I answered it. When I answered it, I was greeted with, "Good morning Michael, This is Tim Harris from Tim's Place." Yes that's correct, Tim, the owner of Tim's Place was personally calling me after I sent him a message the night before. He wanted to personally call me to thank me for the letter I sent him. I instantly began to tear up so I went to my office to continue the conversation. It was fairly brief, mainly because I was a little awe struck and didn't know what to say. We talked briefly about my little one that is on the way and that he has given me hope and joy knowing that my daughter will one day be able to bring so much joy to people, just like he has. After our conversation I hung up the phone, wiped the tears from my eyes and smiled. Things were going to be alright and I knew that truly in my heart. My little special girl was going to bring so much joy and smiles to The Woodcock's and everyone she crosses paths with. Who knows, maybe one day she'll have more Olympic Medals than Michael Phelps and Tim Harris.
Of course I know that Tim's story is a special circumstance and that not all children with Down are able to do the things that he has, but I guarantee you one thing, As long as I am living and able I am going to do everything in my power to give my little girl every opportunity to follow her dreams.

If your interested I've attached a link to the YouTube clip that started this whole story off.

https://www.youtube.com/watch?v=y6He0FWoFj0

Score another point for Team Woodcock!

This week was chaos. It was end of quarter for me as a teacher and it was Outdoor Retailer in Salt Lake City so Mike was slammed at work. 4 weeks ago I scheduled the fetal echo cardiogram for today knowing I had it off and generally Mike has Fridays off. I didn't know it was OR or that he'd have a manager out sick all week. Anyways, Mike's mama Celia was kind enough to come with me.

I arrived at the new building at Primary Children's and felt silly going in without a kid when every other parent is schlepping around multiple kids. I was told the appointment could take many hours, just depending on how cooperative baby is and if they find anything. We were asked if we mind if a regular OB doctor sat in to observe as she wanted to learn more about what the cardiologist look for. We agreed and were told not to be nervous that she would be asking lots of questions, not because there was something wrong, but because she was inquisitive about the cardiogram. 

The technician and the observing OB doctor were super. I told them I was mad I wasn't even offered the chance to watch a movie on the TV and dvd player they have available (remember, I'm at Primary Children's...). We actually had some great conversations about some random things--going to buffets in Vegas at 10.40 am so you pay for breakfast but they are just switching to lunch so it is the best of both worlds! I was so glad I was not the only one who does this! I don't even know how the technician was able to multitask--do her job AND carry a conversation. Just over an hour went by and she said "Well, that's it! I'll go get the cardiologist!" Apparently baby was very cooperative and we were pretty quick.

The doctor was very pleasant herself and just did some scanning of her own for just a few minutes. She said everything looks great! No holes or congenital heart defects! Woohoo! So happy we can cross that off our list of possible medical issues! I asked if there were any complications that could arise between now and delivery and she said pretty much, nope! She did emphasize though that the heart is still itty bitty and we are clear of all major complications and that we will need to do another cardiogram when baby is born to make sure nothing small was overlooked or that nothing small developed. And she gave us the go ahead to deliver at Riverton! 

After the appointment I wanted to go to the eligibility counselors to ask about Medicaid and Social Security. Meh. They thought I was crazy that I am 25 weeks pregnant and wanted to know the process of paperwork, how it all works, etc. I am sorry I am a planner and would just like to know what resources are available.

Lots of Woohoos!

Don't worry...this one is not nearly as long as the first post!

On Wednesday January 7 we had two doctors appointments. The first one was with our fetal specialist. He is very cut and dry--not our usual type of doctor, but oh well. He reminds me of Ben Stein, but without the sense of humor. We had another 8 am appointment so I took a half day and Mike's work is flexible and he can go into work late. 

We were just going for a follow-up for the ventriculomegaly. To our surprise, the ventricles were measuring 8.2 mm! At our previous 2 appointments the ventricles were measuring 12 mm, with the normal range measuring under 10 mm. At our last appointment we were told we would have to come in to monitor the ventricles to see if they stay the same or get worse. No one ever mentioned the possibility that they could self correct, and self correct so quickly! Woohoo! So hopefully we have one less medical condition to worry about when baby is born. The technician and doctor also took a look at the heart. the technician kept looking at something and I forget what she called it (dang pregnancy brain! I forget everything unless I write it down...maybe I should get my ventricles measured...) but the doctor was more concerned about finding a hole in the heart (a common condition with children with Down syndrome) but as of last Wednesday he did not find one! Another, woohoo! He said because the ventricles have gone down in size, as of right now, he is giving us the OK to deliver in Riverton (our hospital of choice) with our beloved doctor! We go for the echocardiogram in 2 weeks so they will probably have the final say on where we deliver. 

Our second appointment of the day in the afternoon was with our regular OB for our monthly checkup. She was happy the ventricles had gone down in size and even mentioned if we had our 20 weeks ultrasound a week or two later we may not have even picked up on the ventriculomegaly, which she would not have sent us to a specialist, and we would not have had a diagnosis. I am grateful to have the diagnosis before birth, even though it makes me a giant stress-ball, I am happy I can use the time to do as much research as possible. 

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FAQ

Well if she doesn't have ventriculomegaly anymore, does she not have down syndrome?

Nope, she still does. Ventriculomegaly was one of those things where some people have it and are completely unaffected by it, but can cause some delays in others. It does not need to be present to have a diagnosis of Down syndrome. Whatever was not allowing the spinal fluid to leave the brain and circulate has self corrected itself.

What type of things can you research? Pretty much everything! I have already read the book From Diagnosis To Birth and we both are reading the books that the Utah Down Syndrome Foundation have already given to us (I read the chapter on what causes Down syndrome and find the science behind it fascinating!). I have been doing the research on how Medicaid and Social Security will work, if at all for our family. 

The Game Changer

Some of you have heard this before, some have heard bits and pieces through us or through the rumor mill, some have no clue at all what this is about because even though the title of the blog gives it away, you may have failed freshman year biology.

So here it is. Our secret. I am not sure I even like using the word “secret”. Secrets are things you don’t want people to know or are even possibly ashamed of. Mike and I are not ashamed. At all. And we actually WANT people to know. We want to share our experience. We want you to feel comfortable asking us questions or sharing your experiences. We tried to tell as many people as possible in person, but frankly, there are too many of you that we care about, so we figured a blog would be the best way to keep everyone in our life informed with the facts so you don’t need to rely on gossip or so there won’t be an elephant in the room next time we see you. Which, by the way, how the heck did there get to be such a big elephant in the room so quickly??

Mike and I are honest people so we will be honest here, too. My thoughts will be in red so you can see what the heck we were thinking.

It all started Wednesday December 10. We went in for our 20 week ultrasound. I am impatient so we already knew the gender so this was a pretty routine appointment for us. During the ultrasound I did not notice anything in particular that the technician was focusing on. We then went to meet with our doctor. She did tell us that the ventricles of the brain were measuring larger than normal. Normal is considered under 10 mm, with an average measurement being 6 mm. Our babies ventricles were measuring 12 mm. This diagnosis is called ventriculomegaly. The measurement of 12 mm is not too alarming. Some people are born with this measurement and that’s it. Some have it and are developmentally delayed. So maybe it is something. Maybe it is not. She referred us to a fetal specialist.

We went to the fetal specialist on Monday December 15. Can I just have a side note that I HATE missing work. Anyways, this ultrasound lasted about 45 minutes. The technician was just measuring everything. Also, the baby was being uncooperative about showing her left foot and the technician was getting frustrated. Uhhh, who the heck cares about her foot? Aren’t we concerned about her brain?? We’ve seen her foot so we know it is there…(It wasn’t until after the appointment I looked it up and a clubfoot is a trait of some chromosomal disorders.) The technician left to get the doctor. He came in and introduced himself and asked if we knew why we were there. We had the usual, “uh-huh” and “yup” reply I am sure he gets all the time. He did some more looking and measuring without really saying anything. He was pretty quick. When he was done, he said, “Your bladder is pretty full, do you need to use the restroom before I tell you everything?” I quickly replied “Nope” because I am impatient but in that 2.3 seconds my mind was racing and wondering what this “everything” was that he had to tell us. I saw on the screen that the ventricles were enlarged so what more could he possibly tell us?? I got off the table and sat next to Mike and the doc pulled up a chair and a clipboard. He started drawing a picture of the brain to explain the ventriculomegaly (yah...I still don’t know how to say this word, so I just say enlarged ventricles). I’ll give y’all the Cliff’s Notes version. The ventricles are enlarged and filled with spinal fluid. Generally the fluid will circulate through the brain and spine. I felt I had a good understanding of this before coming in. Then he said there is also a “flare up” in the heart. Again, he said, maybe it is something, maybe it is nothing. I think the heart was too small to get a real good look. I think we looked confused at this point because he said something is showing up on the ultrasound but he can’t see what it is. Just like when you have a calcium deposit on your finger nail. It is there, but not really a concern. He said it could be like that. But the third thing that was found was that the skin on the back of the neck was measuring thicker than normal. Yah? And? My second toe is longer than my first. So what? Who cares about skin thickness? Maybe a papercut won’t hurt as bad then. He then went on to say the three scenarios separately would probably not be a big deal, but the three of them combined probably mean Down syndrome. After this the geneticist came in to explain our options. We could terminate our pregnancy. Ummmm...how did I walk into this appointment with ‘it could be something, it could be nothing’ to having a conversation about terminating a pregnancy?? Mike and I both blurt out “NO” before she could even finish her sentence. Wow. I am glad we were on the same page there. Or we could do nothing. We could get a slightly invasive procedure called an amniocentesis to get a confirmation. The test is 100% accurate and there would be a long needle inserted and will take out about 2 TBS of amniotic fluid. The cells of the baby would be in there and they would then look at the cell for chromosomal abnormalities. There is a risk of miscarriage. Oh, and this test is covered by insurance. The next option would be a less invasive test--a simple blood draw. Apparently in women carrying children with Down syndrome, there are particular hormones that are extremely elevated. This test has no risk of miscarriage, is only about 99.5% accurate, and of course, is not covered by insurance. As Murphy’s Law is based off our life, we opted for the slightly less accurate, less invasive, costly blood test. The test results take 7-10 calendar days. Awesome. I can’t wait to get test results on Christmas Eve. That was the end of the appointment. And now we wait.

On Monday December 22 I was a nerd and went into work even though it was Christmas Vacation. Probably within 3 minutes of me sitting at my desk and turning on my computer, my phone rings. The phone number is coming up as “Murray, UT”. Well, at least it isn’t Christmas Eve. I answer and it is a different geneticist, saying the woman we spoke with last week was off that day, but they wanted us to have the results. The results were positive for Down syndrome. I asked again how accurate the test was and the percentage of false positives--not because I was in denial but because I am a math person and like numbers and statistics and actually teach a unit on it in the spring. She again told me the test is about 99.5% accurate so although not 100%, with the findings of the ultrasound we can say it is 100% confirmed. The next couple of minutes were a blur as I called Mike (and of course my principal was walking in and out of my room numerous times because I needed a new projector). Mike called his parents and I called Cathy. That is pretty much our experience and story. From here on out, it was just telling people. We didn’t really know how to tell people. I don’t think there is a Hallmark card. We decided we wanted to tell as many people as possible in person, which wasn’t easy considering it was Christmas. I was traveling. Other people were traveling. Mike was working lots of doubles. So the next week and a half or so was us telling people. So I am sorry if you did not hear from us in person. Please don’t be offended if we didn’t tell you “right away”.

So for those of you who didn’t know, Down syndrome is when there is an extra 21st chromosome (hence the title of the blog). We figure since our baby has 47 chromosomes in each cell instead of 46, there is just that much more of her to love!

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Here is some information we have learned. I hope my English teacher friends appreciate!

In the US, it is Down syndrome. Capital D, not possessive. In the UK, it is Down’s syndrome. Capital D, apostrophe s. I don’t know why. Maybe the US decided to rebel and be different in the same way that they invented a whole different unit of measure and didn’t want to use the metric system.

Always list the child first. The emphasis should not be on the diagnosis, so it is proper to say something like, “My child with Down syndrome” or special needs or whatever. You are not supposed to say, “My Down syndrome child”.

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Frequently Asked Questions:

How will this affect the remainder of your pregnancy? Who knows! Everything is pretty much day to day. It hopefully should be relatively normal. We will continue to meet with our regular OB/GYN. We will meet frequently with the fetal specialist. He will just monitor the ventricles to make sure they don’t get larger. Not sure what actions will be taken if they do get larger. We meet with the cardiologist at the end of January when the heart is bigger. Depending how everything goes with heart, etc. the only differences we face is we may have to deliver at the U so we can be next to Primary Children’s if the doctors expect there to be any difficulties. I may have to get a C-section. Other than that, pretty normal. Just hoping I don’t miss much work with all these dang appointments!

Are you expected to deliver early? Nope. Well, I went a week early with Ali, so I may go early again. Mike is still hoping for a May 4th delivery date so he can call the baby “Chewie”. (Yah, that is a Star Wars reference...May the Fourth be with you…)

How the heck are you two holding it together? I dunno. Because we have to? Don’t get me wrong, I have cried. Mostly about the uncertainty of everything. I. Am. A. Planner. Sometimes when I tell people our situation, I am totally fine, sometimes just cracking jokes, other times I just break down. Happened just back east. I don’t know if I was making complete sentences so I hope the Fitz’s are reading this to make sense of everything :)

Can you do a test to see how "severe" it is? Nope. We really won't know much until the baby is born. As of right now the ventriculomegaly is considered mild, so I hope that is a good sign. We will monitor the ventricles throughout the pregnancy to see if they get worse. Also, when they did the blood draw they tested for a virus in my system, CMV (Cytomegalovirus). CMV is just a common cold virus so they were surprised that I had not been exposed to it as a teacher. This virus is known to cause birth defects. The same day that we got the negative result on this, my mother in law Celia got a medicine journal in the mail and there was an article about CMV and birth defects. I guess a lot of babies affected by it do tend to have more medical problems. So, hopefully good news for us, but again, we won't know anything until baby is born and she is or isn't meeting certain milestones.

You really didn’t consider a termination? Nope. I am pro-choice, but that choice is not for me. Last February when Mike and I (and sometimes Ali) were discussing expanding our family we did not make any conditions for the baby. That we would only have a baby on the condition that it would go to Harvard...or that it be a professional athlete. We wanted a baby unconditionally. And we plan to continue to love the baby unconditionally. FUN FACT: The conversation of having another kid started during the 2014 Winter Olympics when NBC profiled Canadian Skier Alex Bilodeau. I said we should have another kid because I was so impressed with the love Alex and his brother had for each other. His brother has cerebral palsy. So I guess I really tried to replicate their relationship...

Don’t you think this will be a burden on your marriage or on Ali? I think having any new baby is a “burden” in it’s own way. Studies have actually shown that marriages that have a child with Down syndrome have a lower divorce rate. So nanny-nanny-boo-boo, my marriage is better than yours. Similar studies have shown that yes, a sibling with special needs can be a “burden”, but the other siblings are actually better off. Again, a win! for team Woodcock.

What do you want/need from us? I’ve gotten this one the most. I usually respond that I need my dishwasher unloaded and my floor mopped etc., and the typical response is a firm NO! Well. Fine then. All we want and need is for you guys to continue to give us your love and support. And if you have free time, you can do our laundry, too! :)

So that is it. Our whirlwind ride over the last few weeks. Please feel free to ask or talk to us about anything. Our next appointment is January 7th with the fetal specialist and we meet with the cardiologist at the end of the month to see if the “flare up” is something of concern.