The Bean and its Omphalocele

Bear with me and this super long post…

I haven’t been in the mood to blog in a while. A real long while. I’m tired and unmotivated. Plus, since our desktop died earlier this month, taking along with it 1 billion and a half photos (including many photos of things I actually created drafts for), I’m even less motivated to think of and create new things, to blog about.

I’m not depressed, I’m just really tired. I’m slipping back into the early pregnancy tiredness when I just want to lay on the sofa to relax while mindlessly watching and re-watching this season of Chicago Fire or Scandal or go to bed before 8pm. I’m not used to this and it’s really weird, confusing, and tiring.

So while I am not depressed (just tired), I am super anxious.

I’m super anxious that our baby arrives in 30 days. I’m super anxious that I need a C-section. I’m super anxious that our Bean will need surgery about a day or so after his/her arrival. I’m super anxious that we won’t be able to hold our baby for a few days.

umm what? Exactly…

I haven’t discussed it here (aside from saying I need a C-section) or anywhere really, but I figure that since I’m a month out from delivery and I’ll be sharing plenty about The Bean after that I should explain what Price and I have been dealing with since May.

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So I found out I was pregnant early on since I am very, very much on schedule (I think that matches my type A controlling nature). So thankfully I stopped drinking immediately and figured out that I was the most exhausted I had ever been in my life related to being pregnant, and not having mono or something. Thankfully, besides being tired & wanting to go to bed before 7.30pm, I was feeling well considering I was never sick so I just made my appointments to kick things off at the Dr’s and went on my merry way.

Things were going smoothly until I had a little scare at 6 weeks when I started bleeding one night. I stood up when I was going to bed and something felt off and there was blood down my thighs (TMI). I had a complete freak out, obviously, and an unscheduled trip to the Dr the next day which resulted in us seeing The Bean with a strong heartbeat. Bliss.

first ultrasound!

Well, it turns out that since my blood type is O- my Rh factor is negative, so a whole bunch of medical stuff aside, my body was just freaking out a little about the intruder (most likely with + type blood from Price) rapidly growing inside me. I had to get a RhoGAM shot to help balance things out and since then I’ve been good to go with follow-up shots.

After that we just kept going along our business going to appointments to meet my midwife and Dr. (The practice that I go to uses both midwives and OBGYN’s to monitor you so that is why my appointments are split up between the two.) Had some quick Ultrasounds (US) at 8 weeks and 10 weeks to double-check measurements to confirm the due date and get some heat beat readings- all in the 140’s for you people who want to guess on the sex of the baby.

We were going along according to plan right until the nuchal translucency screening (NT test) on May 20th. This rest is performed after 12 weeks to check on growth as well checking on indicators for Downs. The US was going well with the tech taking the required measurements for Downs and everything was looking good since those readings were well within an acceptable range. But then things started to go downhill in that the tech and Dr (not my OBGYN) saw something on the abdomen. And that is when the tears started to steam down my face and the grip we had on each other’s hand got tighter. The Dr went to get another Dr for a second opinion and that is when I looked at Price and completely lost it. Thankfully he calmed me down before the US continued on and the Dr’s were awesome and so kind about telling us what they saw.

the ultrasound that changed everything

Ultimately, it was discussed that the baby has an omphalocele, meaning that there is an abdominal wall defect resulting in the baby’s abdominal organ(s) are growing outside of the baby around its navel. (Don’t google omphalocele. Just don’t. Don’t look at images. Trust me.) This was devastating to hear because we didn’t know what it meant really for immediate issues after birth and for the long-term.

After the NT scan at the ultrasound center, I went to my OBGYN’s office to check in with them and complete the rest of the First Trimester Screening by getting my blood drawn. We further discussed what having an omphalocele meant, esp. one in which it appeared that the liver, or at least part of the liver, was in the sack that was protruding from the abdominal cavity. Additionally, they then started to get things scheduled with a specialist at another office.

So from the time I had the scan until I could see the specialist on the following Tuesday, I was a massive crying mess at work, on the bus, at home- so everywhere.  One morning on the weekend I woke up, rolled over to the wall and stared at it for 20 minutes and then rolled on my back and stared at the light for another 20 minutes before shuffling downstairs where I cried once Price met me at the bottom of the stairs. Basically, it was the longest 8 days between the NT scan and the appointment with the specialist- thanks Memorial Day weekend.

So Tuesday comes along and we have another Ultrasound and our appointment with the specialist. Unfortunately, we left that appointment on Tuesday disappointed with the specialist because of her bed side manner and how we overall didn’t feel that she was providing the info that we were seeking and hoping to get clarified for us. At least things kept moving along and I had another test scheduled then for Friday.

On Friday, the 31^st, we went to a local hospital for genetic counseling and for a Chorionic Villus Sampling (CVS)- like an amniocentesis but performed earlier on and instead of taking amniotic fluid it would take some tissue from the placenta. This time I had a different specialist who we loved (and have been seeing ever since). She was great throughout the whole procedure and we liked her attitude. The CVS wasn’t so horrible but hurt in a weird way since I had the sampling taken from my stomach (instead of vaginally). In the end I had to have it done twice in order to get a good sample. I think I crushed Price’s poor hands as I squeezed the shit out of them when I was freaking out, not because it really hurt but more because I was so worn out from all the crap going on. Like a ‘what the fuck is happening in my life right now!?!?’ moment which resulted in some sobbing (what else is new) during the procedure… you know the one that I have to remain perfectly still because there is a needle sticking in your stomach and into the placenta. Again, the dr’s and nurses were great getting me to breathe and focus and get still again for them to continue on.

post CVS ultrasound to check on The Bean

After the test I had to have another RhoGAM shot, get my blood pressure taken, and another US to check on the baby, who was doing perfectly fine.

The CVS wasn’t that bad and I pretty much felt fine the next day. It just sucked to sneeze until about Monday, but no real complaints.

All weekend were on edge as we were awaiting the results of the CVS. We were on high alert for issues with chromosomes 13, 18, and 21.

For example, an extra 21 chromosome indicates Downs Syndrome. In some cases an omphalaocele can be a visual indicator that signifies that the baby has something wrong with chromosomes 13 and 18. Trisomy 13 is known as Patau Syndrome, which results in severe intellectual disability and physical abnormalities in many parts of the body, which often means that many infants die within a first days or weeks of being born. As well, trisomy 18 is known as Edwards syndrome, is a chromosomal condition associated with abnormalities in many parts of the body, often resulting in babies dying before birth or within their first month. In both cases, only 5-10% of children with those conditions live past their first year, and these children often have severe intellectual and physical disabilities.

On Monday we got the preliminary test results back from the CVS. The FISH Results identifies if all the chromosomes are present and paired. Thankfully, the results showed that showed that ALL chromosomes were paired. We were able to take a big sigh of relief, at this point because this was some great news.

Things continued on as we awaited the final results, which would show if there were sections of chromosomes missing or duplicated. Again, we got great news being that everything was looking good chromosomally. (We could have pushed things further at this point with an amino to get some more detailed results, but we decided not to as nothing in the CVS results was questionable or raised any further red flags.

It was then at we decided to share the news with more people and on the blog!!

We continued on with more appointments and ultrasounds through June and July. Again, everything was looking fine with the baby’s development, including its heart. Again, the omphalocele could indicate physical development issues, but in this case it appears that it is the only problem and there are no other associated developmental issues.

hand on its face- something that has been consistent since May

In mid July we had our first appointment with the surgeon at Boston Children’s Hospital, about 20 minutes from our house, where the baby will be transferred to after it’s delivered at Brigham and Women’s Hospital. (They are actually connected with a bridge!) Here the baby will have its surgery and stay for about a month in the NICU as it heals. The surgeon was fantastic explaining what the ultrasounds have been indicating and what it ultimately meant for the baby, its care, and long-term health. Since everything was indicating a small to medium-sized omphalocele that contained part of the baby’s liver, she was explaining that it appeared that the baby would only need 1 surgery and have to stay in the NICU for a month. As well, it doesn’t currently appear that there would be any long-term health problems. She told us about a study of teens that had omphalocele’s at birth and how their biggest complaint was that they had a weird-looking belly button because the surgeons have to make one for them since that is right where the omphalocele is. Oh, big complaint!

Again, the summer kept moving right along with bi-weekly US appointments that the specialist would review and then recap with my OBGYN and midwife. So right now this is one well ‘photographed’ baby and it isn’t even born yet! Related to that, I’m quite proud that we haven’t accidentally found out the sex with all those scans. I warn them every time not to tell me and if they are looking around down there to tell me to close my eyes!

I passed my sugar test in early September with flying colors and have been doing well myself with staying active (thanks Kemper!) and not gaining much weight.

We then went on our ‘babymoon’ to the Florida Keys in late September. It was such a great trip and so worth it. It was nice to take a break from everything and get away together. Plus it didn’t hurt that great food, beautiful sunsets, driving around with the top down in a convertible, laying out by the pool, Price’s birthday, and our engagement were involved!!!

On October 2nd, we had our 2nd appointment at Children’s Hospital to meet with our surgeon again so she could check up on The Bean’s progress and for us to meet with a lactation consultant and get a NICU tour. The tour of the NICU was the hardest part being that we could see the incubator that The Bean will be in while hearing about the kinda of care that is given, how schedules are kept, and what it is like to visit. It was super hard seeing the babies that were teeny tiny and having notes up that they were there for 2 or 3 months already. Insane to me. It makes me thankful we are not in the situation but still so hard to see the place where we will be going to daily to see The Bean while its healing there. So of course I cried after the tour while we waited for the surgeon to come in. Not super awkward at all…

Still things are going well with the baby growing on track (last update was an estimated weight of 4lbs 14 ounces on Tuesday 10/22). The baby is still Frank Breech which drives me crazy but the Dr’s aren’t worried about it since I’m having a C-section anyway.

Well, now I’m now to the point where I have weekly appointments with my OBGYN/midwife, in addition to my bi-weekly US appointments with my specialist. Apparently, all I do is run around Boston going to appointments now, pay for parking, and wipe ultrasound gel off stomach and clothes. 😛

So that brings everything up to speed now with what has been going on with The Bean.

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It is hard to be a month out at this point. I was doing much better dealing with things when I still had months and weeks until The Bean’s arrival. But not that it is really fast approaching I’m really struggling now knowing that when the baby is born it will have to have a surgery about a day after its born. And in all likelihood we won’t get to hold the baby for a few days in order to not disturb the abdomen and the liver in the omphalocele. It is not what I pictured at all for the arrival of our first baby but we have to just roll with the punches and keep on going.

So I’ll wash and fold the clothes and just wait to get to use them until Christmas time when the baby is actually home. We’ll drive around with the car seat awaiting the baby to sit in on its first trip home. And we’ll tell the dog for the millionth time he can’t chew on the bouncy chair’s hanging stuffed animals that he so want to destroy. He has to get used to all the baby stuff hanging around!

So thanks to the family and handful of friends we did tell for their support during the past few months. xoxo