Sunday, January 31, 2016

Procedure week...

We spent last week in Denver at Children's Hospital Colorado. It was a ridiculously long week, we met so many amazing people, and are completely exhausted.

We spent all day Monday in appointments or meetings. I had a fetal echocardiogram done first - baby's heart looks perfect.

Then they sent me down to MRI. That was an incredibly miserable, uncomfortable 90 minutes, on a hard table, not being able to move at. all. They needed to get better imaging of the baby.

After the MRI, we went back upstairs to have an ultrasound done. Baby looked awesome, except for the fact that the bladder was severely enlarged, which we already expected. Other than that, all of his measurements were perfect.

We met briefly with a social worker, who just wanted to make sure we had everything figured out financially, and had a good support system and a good understanding of what we were potentially facing.

The last meeting of the day was the family meeting, with the entire surgical staff, everyone that would be dealing with the baby before and after birth (if we were to deliver at that hospital). It gave us a pretty good idea of what we were looking at. The fetal surgeon was there (Crombleholme), as well as the Maternal Fetal Medicine dr (Galan), the Nephrologist (Gobel), the Neonataologist (Reynolds), Urologist (Wilcox), a pediatric resident, and the patient coordinator (Jenna). They went around the table, each giving a brief explanation of their view of the situation, and gave us information on what we were looking at. They gave us the options we had for treatment (full-speed treatment, doing everything we can now and after baby's born; doing nothing and taking a wait-and-see approach, and just comfort care after baby's born; a combination of the two, whatever we were comfortable with; or ending the pregnancy), along with the potential risks and benefits for each. We learned that the procedure we were wanting to do was still so experimental that it had never been done on a human before - only in animal trials with sheep, where it had been successful. If we chose to do that procedure, we'd be the first ever to have it done.

We went back to the hotel with a lot of information, and a lot of thinking to do. They wanted us to meet with more people the next day, more one-on-one, to get more in-depth information on what we'd be looking at, both with the procedure, the rest of the pregnancy, and in the long-term, after the baby's born. We wanted to see the worst-case scenarios, so we'd be prepared for everything.

The next morning, we went back in. We met with the Nephrologist (Kidney doctor), who answered more questions about dialysis, and then we went into the kidney center and met a family who was training to do at home peritoneal dialysis with their three-year-old daughter. They showed us how that worked, the medication list, her dialysis port, and told us a little about their story. After that, we went into the NICU and met with another family whose 4-month old little girl had been on dialysis since she was born, and had never produced urine, even in utero. She also told us about the difficulties of having a baby on dialysis, as well as being in the hospital long-term. It was an eye opening experience, seeing these sweet little girls hooked up to machines.

Later in the day, we met with the Neonatalogist, who basically went over the procedures there. It was a short meeting, since we've been through the NICU before, albeit with a healthy baby.

At the end of the day, we met with the MFM and surgeon, and went over more pros and cons of stent (the experimental procedure) vs. shunt (a procedure that's been done for over 30 years), vs. doing nothing. We had decided to do the stent procedure. We signed the consent papers, and left.

At 5:30am on Wednesday, we were back at the hospital ready for the pre-op admission. They did an IV, did vitals, had me change into compression stockings, as well as the compression cuffs they hook up to a machine. They did another ultrasound, gave me some medicine to settle my stomach, and sent me to the OR. In there, they did a spinal block, and set the catheter for an epidural, in case the spinal didn't work. They gave me pain and anxiety medications in my IV to put me to sleep, rather than using a general anesthesia. I don't remember much... I do remember snoring (hah!), and waking up a few times, telling them I was awake and asking for more medicine to go back to sleep. I think I asked someone to scratch my forehead, since my arms were strapped down. I also remember, at the very end, the doctors talking, and pushing really hard on my belly. I had no idea what was going on.

The procedure went quickly - I was out less than an hour after they started. The meds were still making me super loopy and tired, and it took several hours for the spinal to wear off. I was on strict bed rest for the next 24 hours - cathed and everything, couldn't get out of bed for any reason, even to pee.

The doctor came in later and told me how the surgery had gone. They went in first and added 900mL of fluid, since my fluid was low to begin with. After that, they inserted a camera and a laser into the baby's bladder, and they were able to laser the valves partially open. They were able to see him passing urine, which is incredible. After that. they placed the stent. When they did this, he was really close to the uterus, and the stent got stuck in the uterine wall. When they pushed him away (which is what I felt), it stayed in the uterus and pulled out of his bladder. After that, they went in with a needle and drained his bladder.

So the surgery didn't go as planned... And while we knew that was a risk, it was still a huge letdown. We're hoping he's able to continue passing urine on his own, that the valves stay open, and that it's enough to relieve the pressure on his kidneys.

They gave us the option of staying over the weekend and attempting the shunt procedure on Monday, but we decided to wait. The amount of pain I was in from that procedure, in addition to my likeliness of going into preterm labor on my own, and the increased risk of preterm labor, and amniotic rupture from multiple procedures, made us decide to wait and see what our Dr here in Florida said.

The larger incision in my abdomen was (and four days later, still is) incredibly painful. It feels like it's pulling from the inside, any time I stand up, and it hurts for anything to touch it. After this, I also stand firm in my stance that I will NEVER again willingly have an epidural done. My back hurt so bad after, and is still very tender. It hurt to move, at all.

They had me on the contraction monitor, because any irritation to the uterus can cause contractions. I had several throughout the day, but they weren't really that painful. Later in the evening, around 8:00pm, the contractions got really really bad. They were coming every 2-4 minutes, and were so incredibly painful. I cried through every one of them.

Thursday morning they came in to do another ultrasound to make sure he was doing well. The contractions the night before hadn't caused any dilation, which was amazing.  Amniotic fluid levels were good, and his bladder was bigger than the day before, but it was a more normal size. (Normal is relative... It was still larger than it should be in a healthy baby, but since his bladder was so distended before, it makes sense for it to still be stretched out.) I was beyond happy when they removed the catheter and said that I could get up, and they were going to be discharging me.

That afternoon, as we were walking across the hospital lobby, headed back to the hotel, I felt a small gush of fluid. I went to the bathroom, hoping it was just bladder irritation from having a catheter for over 26 hours. After that, I felt an even bigger gush. We went straight back upstairs. They did testing on the fluid, and confirmed that it was amniotic fluid. During the procedure, the amniotic membrane fully separated from the chorion, another membrane between the amniotic sac and the uterine wall. Because of the separation, fluid was able to leak into the space between the membranes. We were hoping that the leakage was just the fluid from in between, and that I wouldn't lose more of the fluid around the baby. I went back in on Friday morning, before our flight home, to have another ultrasound. Cervix was still long and closed, which is good, but the amniotic fluid around the baby was extremely low. They gave me orders to stay down as much as possible, and follow up with my doctor asap.

I have an appointment with him tomorrow (Monday) morning. I've stopped leaking now, and I'm not sure if that's because there's not fluid left, or if it's because the membranes have shifted, and the holes from the surgery aren't lined up anymore (which is what the doctors in Denver said might happen, and were hopeful would happen). We're praying for his bladder to be draining, that his urine output is able to add more amniotic fluid, and that his lungs will be able to develop.

I do have to say... Just about every single person we came into contact with at Children's Hospital Colorado was amazing. They all took the time to explain things to us, to make sure we understood, and helped ease the anxiety and fear just a little bit. It was also really nice that my parents were able to take some time off work and be there with us.

Sorry if this is all scattered and hard to understand... It's hard to remember everything from such a hectic week.

1 comment:

  1. How are you feeling? How did appt go on Monday? Update?
    We are still thinking and praying for you.