From the beginning

So this one is going to be long because since our 12 week ultrasound, we have had quite a few appointments…so a bit to catch up!

This second pregnancy started out as normal as can be.  My cravings for cheese buns and ravioli came back.  I had morning, or better termed, all day sickness.  I started showing really early, which is unfair. Unlike my first, I was far less nervous about everything.  I snuck in 2 hotdogs one week.  I took warmer than luke warm showers.

So when we walked into our 12 week ultrasound, two year old Addison in tow, we were pretty expectant to go in there, have a fun time seeing our little one in baby form for the first time, and then hurry the heck out of there before our wonderful little princess devolves into a screaming, crawling, babbling, head spinning gremlin.  Things seemed to go well during the ultrasound until I noticed the strange worried look on the tech’s face.  That was the first glimpse into my new normal – strange, worried, sympathetic looks.  Once she was done the ultrasound she asked us to wait for the doctor.  So we waited, and waited.  And Addison turned into the gremlin.  And we waited.  Finally a doctor and nurse came, and broke the news.  Our baby had a Giant Omphalocele – which meant instead of completely forming an abdominal wall, our baby’s herniated and the amniotic sac created a sac around some organs that had snuck through the hole.   Also, my blood test came back which resulted in a high probability of baby having one of the severe trisomy disorders – the ones where there is a 90% chance of baby not making it to her birth day, and 95% chance of baby not making it past her 2nd birthday.  The radiologist couldn’t tell us much more than that and referred us to the geneticist.  That night, we had a pretty good cry.  It is not everyday as a parent that you learn that your child will require major surgery and that she might also have a disorder that will cause us to lose her prematurely.  It was hard that night to take things one step at a time, and to remember that we have a long ways to go to knowing the whole story.

Our geneticist appointment was scheduled for a week later, and speaking with him really helped put a lot into perspective. The only thing we knew for sure was that our babe had a Omphalocele.  There were lots of other issues that we just don’t know about yet.  Maybe she has a heart defect.  Maybe she has one of the two scary trisomy disorders.  She might have a genetic disorder called Beckwith-Wiedemann Syndrome (BWS for short) which may result in potential kidney issues.  But more likely, our baby just has a giant omphalocele.  Just an extra little Omph.   He also provided us with a good path forward with ultrasounds and tests scheduled for the next few weeks so it felt like at least we were doing something.  Our good friend also really helped by reminding us that from this point forward, every single test is to confirm that each worst case scenario is not an issue for us.  We decided that we would have a CVS test where they take DNA from the placenta to learn about any genetic disorders we were facing.  One more week wait before the test.

The CVS test was again at the ultrasound office.  Mark loves to be early, and turns out that the ultrasound office pads their appointment times by 15 minutes, so we ended up waiting for 45 minutes before going in for the procedure.  We had a very nice British doctor who came to do our procedure.  The funny thing about doctors is that so many of them are clueless what might shock or worry a patient.  He tried to comfort us that the bigger the omphalocele, the less chance for baby having the scary trisomy disorders.  Not knowing relatively how our baby’s omphalocele measures up with other omphaloceles, we asked if we had a big one.  “oh yah.  its MASSIVE!” That word massive now keeps floating in and out of my head.  Not an extra little omph, but an extra massive omph.  But at the end of the day he is right.  The outcome of a massive omphalocele with no trisomy disorders is more manageable.  The appointment went smoothly enough.  Until I had some pretty alarming bleeding later that night and went into the emergency room.  Thank goodness nothing was wrong.  They were able to get a dopplar heartbeat, and then an ultrasound the next day confirmed that little baby is still happily unaware that so many of us are nervously watching her.

We received our rapid results 5 days later.  These are the results for the 3 trisomy disorders (the two scary ones and also down’s syndrome). It was a Tuesday and they had mentioned I would either get results Monday or Tuesday morning.  I basically spent those two days frantically checking my phone at work until my friend intervened and took me shopping.  I was so nervous shopping that before the call, I didn’t buy a single thing.  Just checking the phone over and over again.  At three in the afternoon, we received the call.  Normal!  Normal…it is hard to believe how many emotions can now be tied to such a mundane word.  Normal.  of course our baby is still not “normal”, this is still just one thing crossed off the list of many possible (but not probable) issues that we will have to deal with.  But honestly, each and every thing we  cross off the list will feel just as uplifting.  Oh and by the way, we are having another girl!  After the results the relief flooded over me and I ended up going on a bit of a shopping spree – cute baby girl clothes anyone?

Sometime in between Genetics and CVS, I met with my maternal doctor at the same clinic we went to for Addison.  Initially I was dreading the appointment because I couldn’t see the point of going to a normal maternal doctor when I know I will be seen by a high risk OBGYN soon.  But I am glad I did.  She mentioned that she has had patients with babies that has giant omphaloceles and reminded me that the most likely outcome is that that’s all there is.  It felt good to know that my doctor has seen this before and can cater her care for me to be more suited to our situation.  She mentioned that if I ever needed just to make an appointment to chat that I could.  It felt very reassuring to be in her care.  I know that for the next little while, I will be in lots of hands so I am glad to be in one set of consistent ones following me through each step of the way until closer to the delivery date.

phew! so much has happened in a mere 3 weeks.  I know that our road is going to be bumpy and long and that there will be times that I won’t be able to look past the current crisis.  I am lucky to have a great team of health professionals looking after mine and baby’s physical well being, and an amazing husband, precocious daughter and unusually cuddly dog to come home to.  We also know that we are beyond blessed to have the friends and family that we have that have already begun to rally around us.  Knowing you are all with us on this journey makes it bearable and reassures me that no matter what this journey looks like, we will make it.  We are happy and excited to have our little girl get through this small part of the big picture and will revel in every little victory and triumph.

wait – can I still complain about normal pregnancy things?  Because my back hurts

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9 thoughts on “From the beginning”

  1. Ahh you guys. So much to compute. Hope that writing it down is helping to get things clear in your head as you also make it easier for me to understand. Life sure throws some curveballs and I’m so sorry this is one you have to catch, however you’re right that you have Family and friends who will do anything they can do to make this easier, or bearable, or give strength or sensitivity when it’s needed. We’re a long way away but we are thinking of you for sure. Love from us xx

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  2. Beautifully written – Your courage and optimism will be good qualities to have as you walk this path with Addison ‘s little sister 🙂 oh and congratulations!!
    Yep, still all the regular preggy “charmers” to deal with too .
    As Peter Sinclair used to say ( you too young to recall Mark?) “Be kind to each other :)”
    You guys are an awesome team!
    Love and prayers for you and your girls,
    Carol

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  3. I am glad to hear that with everything happening you have gotten some good news in the process as well. Main thing to remember is that pregnancies throw all kinds of curve balls at you and you just have to breathe and take them one step at a time. If you ever need someone to chat it through with you know we are always here for you! And plus! That means Lincoln has two choices in potential future wives now! LOL Congrats again love and all our hugs and prayers to you and the family!

    Carolyn

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  4. This is a great idea, I really hope it provides a release the way that you mentioned in your ‘about us’ section. It’s going to be a bumpy road ahead but I have no doubt you guys will tackle each of those bumps head on, and we will all be right there with you for whatever you need. Lots of love xx

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  5. Mind=blown. You guys have an amazing partnership and I’m so glad you have each other to pull through this. We are here for you however you may need, do not hesitate for even a second. Your little girl is going to be smothered with love from her aunties and uncles!

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  6. Wow, beautifully written and like everyone has said, fantastic that you have such a great family network to see you through this curve ball. Let me know if you guys need anything 🙂

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  7. Jess, first congratulations! And second, I’m so sorry that you’re going through this. As you know, I understand what you’re going through. Although our complications were different the same feelings of uncertainty and fear are the same. I also had the same trisomy scare. We didn’t tell anyone we were pregnant until I was nearly 24 weeks because between the trisomy scare, then being told my placenta wasn’t working properly and the baby wasn’t growing well, and then my extreme blood pressure, HELLP and nearly dying myself, frankly we just didn’t know whether we would have a baby to tell anyone about. What I can say is, ask questions but take everything with a grain of salt. If you can, try not to google anything – let me tell you, we caused ourselves more grief doing that – most people talk about the problems and less about the good turnouts. You will have good days and bad days and your journey is just beginning. If you ever need to talk or have question about the process especially the NICU, call me. Having spent 109 days in the NICU I can share our experience so you know what to expect and at least give you some comfort there. The doctors there and the Children’s are fantastic – you can trust them. Your baby’s surgeon may possibly be someone that Ryan has seen – they are so nice, knowledgeable and caring. We’ll see you Sat and we can chat more!

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  8. My dear sweet Jessica … I can’t believe it … first Ari and now your precious little one. Reading your blog brought so many tears to my eyes but at the same time made me so proud of you. I know that you & Mark have the strength to get through this … you must get through this! I don’t know why this has to happen to such good people but I do know that your child is very lucky to have parents like you 2!! Please don’t worry about loving Addison, you have more than enough love to feed an army my dear … also please please please look after yourself first Jessica, be positive and have happy thoughts for your baby 🙂 I hope you know that I am here for you Jessica …

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