Life after NICU and losing my baby girl

Two appointments later…

on 09/21/2014

Ok, I know I’m a day late on updating everyone. Sorry. This week has been so torturous, I haven’t been sleeping very much at all. Kinda makes you REALLY tired when you can finally relax and let your guard down for a bit. Even if its just a smidge. But I’m getting ahead of everything.

Tuesday. Adam’s 30th birthday. We had a regular OB appointment in Little Falls. Didn’t expect much since she’s not the one we really wanted to talk to about baby’s risk. They updated their system (AGAIN!) and now they can easily share patient files between the two clinics. Believe me, this is AWESOME news. Until you’ve had to have your referrals sent 5 times and your files sent 3 times, you might not get how good it is to have such a system. BUT anyway, the dr did her routine measure, listen, and ask us what we were thinking for delivery options, when we would transfer to St Cloud, who we would go with, and why we turned down the guy she had mentioned with our pregnancy with Bailey (dude, that dr she referred us to was mean, rough, demeaning to me, and treated me like I was incredibly stupid and inexperienced. He didn’t care the difference in our case from a typical, easy peasy, no complications birth. Not someone I would go to at all if I could help it. I won’t even mention him. All I will say is I will deliver all my kids with Stocker because he may be a jerk to the nurses (they really don’t deserve it, but they take it in stride), but he’s SO gentle, real, and incredibly calm. We have to remind him of details that make us different, but he’s not over bearing and doesn’t sugar coat at the same time. When you have had a super rare baby, you don’t take sugar coating anymore. You have seen too much and know that bad does happen to good people.

Everything was looking good with baby, her heartbeat was in the 150s, right where it should be, my fundal height is right on for where it should be, and I’ll be doing my gestational diabetes test next month, at my last appointment with her.

The next few days were far harder to get through. The build up to a trying appointment that could be a HUGE deal is enough to cause you to only get a lone hour of sleep before needing to function again. Feeling the tears as you explain you already did the easy appointment on tuesday, the tough one will be friday.

Late night friday, Adam and I had a talk about what we each wanted to say, how we would handle resistance, and how we would push for the truth, for what we wanted. We both agreed we wanted to basically pull them out of their genetic counselor shoes and put them in the parent shoes. The shoes where you have already been in these offices, talking to these people, learning so much about genetics, you could educate a science teacher. Learning all the things that could go wrong vs what could go right. Finding your daughter has a heart defect and being told that a single surgery before 9 months old and she would go on with life, just like any other kid, then having things go horribly wrong and having several drs crowd around your daughter, scratching their head because the defect they found in utero isn’t what is causing these problems. Then, having to lay her to rest after a long, hard battle that you NEVER pictured you would endure. Then having a rainbow pregnancy, riddled with fear of a repeat and finding someone dropped the ball and you get answers you so deperately needed a matter of a week before delivery. Then finding you are pregnant again a year later. One screening comes back with AWESOME results, only to have another screening come back and contradict the first one. Luckily, we didn’t need to go into battle like that.

We showed up early for the appointment at 1:30, but didn’t actually go back until about 2. Yea, not amused! But, the tech we had was very quick, baby girl was cooperating very well, and she was able to get about an hour worth the measurements in about 35 minutes. I asked what normal nuchal fold measurements would be, but she said “after about 20 weeks, there isn’t a normal anymore. I was just measuring it because she was giving me a good shot at it.” Ok, makes sense. She told us she was going to go talk to the dr and then the dr would come in in about 10 minutes and handed us the disk with the pictures.

The genetic counselor came in and I can’t even explain the relief when I saw it was Amber. Amber was with us during our whole journey with Bailey, most of the journey with Crystian, and had just come back from having her own baby just days after our last appointment. She had handed our notes to another counselor (Emily) and Emily got an education fast. Emily told Amber “there were a few notes in there” and Amber said “A few notes? the file is HUGE!”

But Amber walked in, gave me a hug, and we got down to business. Told you, we aren’t much for the ones that want to do this stupid idle chatter about the weather, weekend plans, and whatnot. We want someone ready to do business and treat us like they would want someone to talk to them. She went over what she saw with the results and I was able to explain what had royally irritated me about the third counselor we had encountered, Joy. Amber got what I meant when I said that I didn’t appreciate Joy talking to me like our baby having downs would end the world. That my fears had NOTHING to do with downs. It has to do with this screening that is WORLDS apart from the first one. Joy didn’t get it. But Amber did. Amber jumped in with both feet, handling Adam and I firing off questions. We got her to explain WHY we couldn’t redo the quad screen. After 22 weeks, the standard deviation (normal range) is much bigger than it was before. It just wouldn’t be fully accurate. That’s why the first screening is the most accurate for down’s. Another thing that was brought up was that it could be something with my eggs or with Adam’s sperm and that’s where we went talking about amnio.

Now, Amnio has a 1 in 300 chance of something happening. That’s the national average. Each dr that does these tests has a different number, based on their experience and their attitude toward them. Given everything we are dealing with, they wouldn’t want to do an amnio before 32 weeks. That is the point at which they are very likely to make it, should something go wrong. Obviously the more time inside they get, the better. But this is when they feel is best to do it. They can get baby to work more with them to get what they need. Then you have enough time to get results, but not so early that it isn’t worth it, it causes too many problems. With us, they would like to do it between 32-36 weeks, depending on how fast they can get the cells to grow and then analyze them. Its something she needs to look into more, but that’s the range she thinks would be best. And the dr that would be doing the test, she’s very experienced and very confident, but she doesn’t take stupid risks. If she doesn’t feel 100% she can get what she needs safely, she won’t do it. It still scares me, but I feel somewhat better knowing how she approaches it and having met her. I feel I *could* do it. Remember, this is the only way we could look at if baby has ACD or not. There is no non invasive way to get these results.

Why does this result to eggs and sperm? We have to look a the fact that we have two healthy boys, but we’ve had things come back in a pattern with the girls and it feels the pattern is repeating, to an extent, and we wonder if its not something with how the two parts come together and based on if baby is a boy or girl, things either go right or wrong. What they would look at in the amnio would basically be just this one nonsense mutation that Bailey had. Why this one? Why not the whole chromosome? Because with how things happen, it would be a real shock if baby has ACD, but not the same mutation. It goes back to when my eggs or Adam’s sperm are formed. Its basically the same code being printed in each part, over and over. But some don’t form quite the same as the “normal” ones you have. With what happened with Bailey, if it happened again, it would most likely be the same mutation. Its really hard to explain, but with how it was explained to us, it wouldn’t be logical for another mutation/deletion to pop up. Like lighting strikes. Yes, we’ve all seen videos of people being hit by lightning and even some where the person is hit more than once. But it would be very unusual to have ACD repeat without that same mutation. That’s exactly what they would look for and why they think it would be very simple, compared to some where they have to analyze much more.

Baby girl’s heart looks good, we will be doing an in depth Echo in October with Dr Chip, along with another follow up ultrasound with the peri office the same day (you think your dr appointments suck, an Echo takes 3-3 1/2 hours and the peri appointments take about 1-2 hours). Everything looks good so far, we are just going to monitor things more. Basically, because we have had a history of things being weird, they want to keep an eye on everything. When you have a child born with a heart defect, they like to keep an eye out on all future pregnancies as well.

Just more monitoring to prepare ourselves for what can happen and be ready to deal with things better.

We did give a plan should ACD be found. If its found, we’ll be working very hard to deliver in St Louis. That’s where they’ve done the only successful full lung transplant on an ACD baby. That lil girl is now about 2 years old. If it comes back nothing is alarming, we’ll just deliver like we did with Bailey and Crystian, with lots of people on hand, NICU notified, and everyone knowing EXACTLY what they need to do.

Did we get all comforting answers? No. But we didn’t get left in the dark. She explained things that were dismissed. You take a look at this counselor, she looks kind of ditzy. But this girl opens her mouth and she’s SUPER well versed in what she’s talking about and has done her research VERY extensively. She’s VERY proactive about everything and very real about how she talks to you. I can’t explain why this girl brings me such comfort, but she and her answers do bring me more comfort than I had before walking in.

So, bottom line, we are feeling a bit more calm and comforted, but we are still anxious. There are still a lot of unanswered questions that we can’t get the answer to until at least the amnio. One thing that was brought up was Bailey’s protein levels that came back on the quad screen. Hers came back on the extreme sides of normal. For example, their cut off for normal with the hcg would be a 2.5. Bailey was a 2. This baby is a hair over 1. They don’t look at each protein alone, but they look at the pattern. The girls have the same pattern. Bailey’s was more extreme, but still there. Part of the problem is the umbilical cord, heart, and placenta working together for baby, if something goes haywire with those parts, it can come out in the screening as something isn’t right.

I know I’m throwing a lot out there and basically leaving others to come up with questions, but there are a lot of things that need a ton of explaining. we are willing to help those who don’t understand.

More fun details to remember, yes, we are confirmed as being pregnant with a girl. She’s about 1#4oz, measuring right on schedule with my timing of the pregnancy with another bigger head. As she was doing a more intensive scan, I did get to see the details of her face and she looks JUST like her sister if you ask me. I’m so excited and nervous for this little lady. I think I’ll be more calm when she’s here, but in the mean time, I’m enduring her going crazy.

Ugh, now I really need to crash out. Many days to catch up on with sleep. Keep praying, but I wanted to share with everyone how things are going and what we have learned.

Off to bed. Sleep well.


One response to “Two appointments later…

  1. Cindy says:

    Thanks for the update. Will continue to pray for your little Lady and all of you. Hope you are able to get some rest and I will be praying for that and for peace. Take care.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: