Tag Archives: stress

I’ve had weekends that were more funner

Posted on by
2

Don’t get me wrong. I’m not complaining. I don’t want to sound like things aren’t good, aren’t positive, and that we’re not blessed. We are blessed. I just wanted a more….relaxing weekend.

We went in for a checkup with the neonatal specialists on Friday. It was determined that the amniotic fluid around Festus is low. It should be between 10 and 20 cubic centimeters, and he’s floating in only 8.

What causes this? Well, amniotic fluid is just fetal urine. He gets blood, nutrients, and fluids from Mommy through the placenta, processes it, and his kidneys produce urine. So if it’s low, they check bladder, then kidneys. Both are 100%. They check umbilical cord, it’s 100%. Then the problem is likely with the placenta.

The placenta is fetal material, which I didn’t know. It’s from the baby, not the mommy. If baby has a developmental problem, the placenta might too.

What’s the risk of low amniotic fluid? I don’t know them all, but one that our doctors are worried about it crushed umbilical cord. They checked the flow through his umbilical cord, and they essentially checked his blood pressure. I know! His blood pressure! So Natalie has to have Non Stress Tests twice a week where they can see if Festus is having a good ‘trace response’ heart rate. So far he’s doing fantastic.

It’s determined that we’re going to deliver by Caesarean section and the date set is October 13th. My sister is born on that day, and she’s agreed to share the date that she’s enjoyed for so many years now on her own.

That will be week 37, which is almost time to pull the baby out of the oven. To be sure his lungs are fully baked, Natalie was given two steroid shots to jump start that process.

On the day (Saturday) of the second steroid shot, she was flush. They checked her blood pressure. It was high. I had spent the morning laying sod at a Habitat For Humanity project in Springville, and was planning on going to Authorpalooza at Barnes & Noble to meet Brandon Sanderson and Dan Wells. I called Nat to let her know I finished the house project, and was going to the book store. She then called me back a minute later and said (I’m paraphrasing), “You need to come get Noah — they’re hooking me up to tests — you need to stop at home and get a diaper — I need you here — you need to come to the hospital.” I-15 is under construction, so the speed limit is 55. When I pulled out of Springville, I was doing 55. My mind was racing with possibilities. The biggest one was that her messages were changing mid-sentances, and the plan (going in for a steroid shot) had taken an unexpected turn. By the time I reached the 1600 N exit, I had visions of her being life-flighted to the U of U, and my speedometer said I was doing a little over 85 MPH.

When I got to the hospital, it was clear I was prepared for defcon 3, and I was incorrect. What had happened is this: when Natalie showed up for her steroid shot, she was flushed and they checked her blood pressure. It was high. So they said they were going to hook her up to the fetal monitor and it was going to take longer than expected. Noah was with Nat, and he was poopy and she hadn’t brought a diaper. Natalie had called to tell me this, but as nurses are want to do, once you think you have all the information, they spout off lots of instructions and information that you want to hear, so Nat was distracted with me.

So….we sit there for TWO AND A HALF HOURS. Grrrrr. When it’s all done, they need to get a 24-hour urine sample from Nat, and they don’t think she can pee three liters in 24 hours (I knew she could). It turns out Festus is fine, but her BP is higher than the Dr. wants. So he says bedrest. Duhn Duhn Duuuuuuuhhhhnnnn!!!

*sigh* As the Saturday plods onward, we cut to evening. Festus has been moving fantastic this whole pregnancy. Kicks, punches, elbows, stretchings, twistings, etc. Saturday night, he kinda….stopped. We started counting how long it took to get to 10 movements. A week ago, it took 10 minutes at best. Saturday night it took 40. I didn’t like that.

Sunday morning we had Nat eat some sweet cereal, and have a bit of ice cream. She lay on her side and we counted. Again, he wasn’t performing like he did. I kinda freaked out. It was Sunday, and it would be impossible to reach any of the neonatal specialists or Dr. Young. I started calling Primary Childrens, asking if it would be better to take a mother up there or deliver down here and transport a primi baby. Turns out they actually have a newborn recovery unit that would do it. Huh. I like knowing that. I spent a little bit of time trying to reach people to ask what to do. All the signs I knew to look for were telling me that Festus wasn’t doing well. Orem Community puts me on hold and then tells me Dr. Young says to come on in.

I grab the ward list so I can call people and tell them we’re not going to be in church. We get shoes on the kids, and we’re off. They hook Nat up again, and check her BP again. It’s still high. I look at the monitor, and I see that Festus’ heart rate is kinda flat. It’s up where I want it (150-153), but it’s flat. You want to see peaks and valleys — they call it a reactive tracing. It means the heart rate is fluctuating. If it doesn’t, then the baby is in stress. Natalie sends me out because I’m not a calming influence on the situation. I step out with the kids to make some phone calls about church (organ, primary program, Natalie’s sunbeam class, piano for primary). My oldest and I had a good conversation about why were there, what it means for Festus, what it means for Mommy, and why Daddy is a cry baby when his family is in duress.

After some time, the nurse comes out and says while I was absent, Nat’s BP actually went down (a fact that she’s going to delight in sharing for a long time), but it’s still high. Festus is doing fantastic, despite our concerns. I’m welcome to come back in.

After I left, Festus had a good reactive trace pulse, and things are great for him. He’s not making the same big movements because he doesn’t have room. So rather than kicks and punches, we’re looking for knee shifts and elbow adjustments. They’re glad we came in, and want us to come back as much as we need to. Mommy and Festus are home, all is well, all are prone and resting.

Nat starts the NSTs this week, and she’s now on strict bed rest. She doesn’t like that, I don’t blame her. We meet with the neurologists on Wednesday, and they’ll have a lot of answers for us, plans, and time lines.

When we first found out about Festus, it was a stressful week or two. Then the stress abated a bit. It was still there, but not making me sweat for no reason. The closer we get, it’s been building, but it’s like some kind of horror movie where every time the actor looks away and back again, the evil monkey toy has inched forward a bit. My monkey is not evil, and he’s inching forward a little every day. This past weekend, the stress ratcheted up a whole lot. We’re still blessed, still happy, still looking forward and positively. I just wish the muscles in my neck and back would stop constricting all day and night for no reason.

I wrote most of the blog before today, and wanted to wait until I had an update from my wife before publishing. I have that update now.

After her 24-hour urine test, it’s determined that she has preeclampsia. You can read about it on your own. See if you can find one of the articles that tells you the mother can die from it in 1 out of 100,000 cases.

Is it raining? Or are rocks just falling from the sky? It sounds like its pouring out there.

Hydrocephalus, the unpleasant development

Posted on by
2

We had another visit with the neonatologists last week.  They did the ultrasound, and it’s pretty cool to see how the bones are developing.  When you get the usual ultrasounds at 20 weeks, the bones are really more like stiff jelly.  When the bones start to solidify, it creates strong shadows on the ultrasound.

The brain has ventricles, that create CSF (cerebrospinal fluid) that flows up through the brain, and then down the spinal column.  This is essentially what we commonly refer to as spinal fluid.  One symptom that accompanies Dandy Walker Syndrome is hydrocephalus, or ‘water on the brain’.

Festus’ ventricles are dilated, almost to double what they should be.  One should be about 10 cm, it’s 19cm.  It’s putting pressure on his cranium, pushing it out.  As of today, we’re 29 and 4 days along, but his cranium says we’re 34 weeks along.  His head is four weeks bigger than it should be.

What does this mean?  More festivities at the party.

We’re going to meet with a neurosurgeon in a month to get their assessment on it.  That is, do we do the brain surgery a couple days after his birth, or a couple hours?  And then he’ll spend a week and a half, maybe two weeks in NICU.

Sigh.

I hate this.  I really do.

I must concede, there are blessings to knowing what is happening.  There are others who might be in the same situation, and have no idea that their pregnancy is like this.  In a worst-case situation, they might have a 6-month old that is crying as though he’s in pain non-stop and not know why (it would be because the cranial pressure was crushing his brain).  How scary then would it be to go in, be told his head is measuring too big, he’s got hydrocephalus, and he needs a shunt put in his brain to relieve the pressure.  Then they find out part of his brain is missing.  Ugh.  How horrid would that be?  Awful.

We know what’s happening, we can anticipate what is going to happen.  We can start with a therapy program within days of his getting here to make sure his brain develops, possibly compensates for the missing vermis.  We are able to schedule his brain surgery, long before the pressure does any damage.  We know to look for developmental milestones.  Now, not all children hit the milestones when they should.  The last specialist we met with told us one son was walking at 9 months, his second son didn’t walk until 18 months.  He admitted he was biting his fingernails.  So if Festus isn’t walking at 18 months, we’re not going to cede he’s bound to a wheelchair.  But we might not be sleeping so well.

This is tough.  There are people who have families with such challenges, and they seem to not even notice they have them.  How do they do it?  I wish I knew.  Natalie and I haven’t had a good night of sleep in months.  We don’t feel like we’re stressing over Festus (there has been plenty to stress over this summer).  But neither of us have slept well for more than three hours.  In months.

For those that read this, please let me know if you know of anything with core blood research.  Any studies, research, success stories, failures even.  I once heard a fantastic story, and then the genetic counselor said she couldn’t find anything.  Rather than call her a liar, I’d like to help her out, and I could use your help.  Thank you, in advance.