Sometimes doctors don't know jack....

I like things to be chronological so I will just start at the beginning. I should also make mention that I am in no way looking for sympathy b/c I have it a lot easier than most. This is for me to document and to let others know that I am more than willing to lend an ear, give a hug or take a trip to Sonic. Oh and I don't have links to all the medical jargon b/c that would take me HOURS!

I have already miscarried twice. Once at 5 weeks and again a few months later at 6 weeks. The first one we didn’t know what happened b/c we were relocating back to AZ and we were in TX & had no doctor. The 2^nd time I went in right away – confirmed the pregnancy and got my blood taken. The doc called the next day and told me my progesterone was at a 1.3 and I should’ve been at atleast a 14 so she was getting me a prescription and having me pick it up the following day. Well before I could get the progesterone into my system…I started miscarrying again. I was relieved b/c now we were closer to figuring out what the issue was.

Fast forward to Aug. 22^nd – I was about to give my 2^nd talk in our ward and was freaking out that it’d be just my luck to start my period at the pulpit So I took a test…and there were those 2 pink lines! I took my progesterone immediately – even tho the directions said to take them at night b/c they cause nausea. Great so now I’ll just be puking at the pulpit…genius Jazz…genius.

I got the pregnancy confirmed, my blood taken & my progesterone was at a 13! WOOHOO! They asked me to come in at week 8 for an ultrasound b/c of my previous miscarriages. This is where it’s gonna get kinda confusing so I will try to explain the best I can.

Week 8 – Normal OB

Tech tells us she sees a “swelling” on the back of baby’s neck. PA meets with us and tells us they think it’s a cystic hygroma and starts giving us information on Downs and Trisomy and invasive testing we can do. Refers us to a specialist for level 2 ultrasound.

Week 9 – Specialist

Ultrasound done – we are in a waiting room and the doc asks us to follow her into her office…not a good sign. She confirms the cystic hygroma – but then informs us that it’s from the top of baby’s head to the end of the spine. She tells us 99.9% it’s a girl and the best case scenario, if the swelling goes down, she will have Turner’s syndrome…and she’s seen the swelling go down twice. Worst case – the swelling would continue, make it’s way into the body cavity/heart and the baby would have congestive heart failure, ending in pregnancy loss.

Week 12 – Normal OB

The ultrasound tech tells us the swelling is pretty bad and keeps apologizing to us. (Annoying) Also mentions that she notices the baby has a hypo-plastic lung (not compatible with life and the baby would never take a breath) – apologizes for that too. Said we probably didn’t want to hear it but that she’d seen a woman that had a baby with a cystic hygroma that carried until 26 weeks. Asks if we’d like to know the sex of the baby…we tell her we were already told it was a girl b/c of the Turner’s assumption...she doesn't deny it's a girl.

Meet with the PA again – more testing info and now termination is brought up and quickly squashed b/c I told her unless I’m dying…it’s not an option.

Week 13 – Specialist

Swelling is still there – but they measure it smaller than the normal OB had. I tell our tech that the other office tech told us the baby had a hypo-plastic lung. She explains they are not hypo-plastic, but they may appear highlighted b/c of the fluid around them. Still not great but I that was drastically different than what we had thought before!!! Doc comes in and takes the wand and says, “This is not Turner’s…” And there it is on the screen – a manpart!!! I just looked at Rod and laughed! Now the doc says we are looking at Downs or Trisomy again. Sched another appt with them to get an amniocentesis done at week 18.

Week 14 – Normal OB

Just a fetal heart check this time…doppler finds it no problem. We meet with one of the Nurse Practitioners we’ve never met before and she’s very nice, introduces herself and tells us she’s read over our records and then asks, “Where would you like to proceed from here?” Weird question…so I ask what she means by that? She mentions how she noticed we had talked to the specialist about such-and-such (I don’t even know what she said b/c I’d never heard it before) so I ask what that was for…she then informs me that it’s where they inject something into the baby’s heart to make it stop beating. Wow. I’m here for a fetal heart check am I not??? I told her that must’ve been a misunderstanding b/c we had never discussed that b/c I wasn’t going to be terminating. She apologized and made sure we knew how important it was to have a good support system and how it was normal to feel angry towards other pregnant women. It was one of the weirdest appointments ever!

Week 18 - Specialist

Get our ultrasound done and the swelling has gone down!!! Heart and lungs are looking great and it’s still a boy – they checked again to make sure he hadn’t morphed back! :~)

Met with the doc again and now it could be Noonan’s syndrome. But they really aren’t going to be sure until the baby is born. They recommend we transfer my primary care to them so I can deliver at Banner Desert for the NICU. They ask us to see a genetic counselor. We do, he draws up a graph of our family history including our grandparents, parents, siblings and their children. Wow – sure enough, no links to anything they’ve mentioned previously! I basically told the genetic counselor I wasn’t planning on doing any kind of testing anyways, we had already heard pretty much everything he told us and it didn’t change my mind one bit. The consultation was a complete waste of time in my opinion.

Week 22 – Specialist

This baby is getting some quality camera time! I swear I was on that table for over an hour! The nuchal fold was there but they didn’t measure it or even really pay attention to it at all…which I thought was strange b/c that was the whole focus these past 5 months!!?? They were really looking at his heart…couldn’t get a good shot of it tho b/c the baby was face-down the entire time! STUBBORN! (Don’t know where he gets that from!?) :~) They wanted to make sure the blood was entering and exiting all 4 chambers correctly and sched us to meet with a pediatric cardiologist.

Week 24 – Pediatric Cardiologist

Ultrasound went well, the doc said the valves are pumping just fine and all of that looks great. However, his left and right ventricles are somewhat thickened and that was their main concern. Right now he’s safe b/c there are extra holes in his heart to be able to pump blood – it’s after he’s born they will have to keep a close eye on it. They think the thickening could be caused by:

1. Gestational Diabetes
   
2. Noonan’s Syndrome (he mentioned there are usually other indicators but he doesn’t see those manifesting in the baby)
3. Some random genetic issue (my personal favorite – NOT!)

Overall – the appt was more optimistic than anything else, the baby is safe in utero so that’s the important thing.

Week 26 – Specialist

Another ultrasound…standard procedure for a high risk pregnancy. I’ve now had 9!!! Doc said everything looked fine – his heart was pumping great they said. They think he’s measuring about 2lbs 11oz…that’s a month ahead of schedule – so they want me to do my gestational diabetes test sooner than later. They did take my blood sugar right there at the office and it was 92 – normal they said. I’d rather him be big instead of measuring too small tho…usually if there’s a heart issue they don’t progress like they should so I’m fine with him above average! He’ll make a great football player! :~)

Glucose Test came back NORMAL! No GD for me! Woohoo!

Week 28 – Pediatric Cardiologist

Told them my GD test came back normal so that’s out. They aren’t sure what’s causing the thickness and they won’t until he’s born. They did say it hasn’t gotten worse and the valve that pumps out of the left ventricle has improved by 50% so it’s not having to pump as hard as it was last time! YAY! The doc was reassured he’d be fine – just going to keep monitoring it and they’ll be able to figure out more after he’s born but he let us know we’d have time and it wouldn’t be something they’d have to rush so that was a relief!