First Visit to Texas Children's Hospital

More on Planning to Move

After speaking to our pediatric cardiologist and surgeon in New Orleans, we decided to officially transfer care to Texas Children's Hospital in Houston for the remainder of the pregnancy. This required a lot of prepping beforehand, such as getting medical records requested & sent to Texas Children's Hospital and looking into what areas were safe to stay in, as well as calculating the expenses.

While the cheapest options may seem to be finding small apartment a little further away from the hospital and commuting, after considering things like the cost of parking at the hospital and the fact that we are unsure how long our stay in Houston will be it, makes more sense to stay at an extended stay hotel with a shuttle.

We tested out a hotel for this purpose this week and it seems to be the right choice, considering the situation. These kinds of hotels have sleeper sofas, kitchenettes, laundry facilities, free breakfast for early appointments, and a free shuttle that picks up and drops off at TCH most of the day, saving us a good bit of money.

However, to save on money even more we are looking into the Ronald McDonald House near Texas Children's Hospital (which costs about $25/day and offers a shuttle and 2 meals). We have also called Hospitality Apartments, which are free but have a long waiting list. We feel that it is best to keep all our options open for now.

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First Appointments at TCH

On Tuesday at 8:20 a.m., we got to meet with our new OBGYN, Dr. Gandhi and discussed the process of transferring care to Texas Children's as well as other concerns, like what to expect for delivery and how to better manage my gestational diabetes.

Overall, it was a typical OB appointment and we decided it was best to get the Tdap vaccine while I am still pregnant in order to help boost Zakariya's immunity once he is born.

Our anatomy scan and ultrasound was scheduled for 10 a.m. The sonographer, Michelle, took a close look at all of Zakariya's body parts and measured his size. She told us he weighed about 4 lbs. and 7 oz. already and would probably continue to gain a half a pound per week until delivery!

We also noted that his head was a bit bigger, like his dad's head. Our MFM came in to speak with us briefly after the ultrasound to answer any of our questions and explained that, aside from his heart defect, the rest of his anatomy looked good.

We had a short break in appointments so we took some time to look around and eat lunch. Our next meeting was with the diabetes educator at 1 p.m. She went over what gestational diabetes was and why I needed to have insulin as well as making sure that I was following the diet correctly. After we adjusted the insulin I'm currently taking she explained the new way to log my blood sugars for TCH. Our next appointment was at 2:20 p.m. for an echocardiogram. We patiently waited while they looked at his heart and its function for over an hour. It's always nerve wrecking waiting for the doctors to review results and speak to us after the echoes. Unfortunately, they didn't have better news for us since the last echo . . . Our TCH cardiologist, Dr. Colquitt, noticed a little fluid building around his heart, but what really concerned him was multiple signs of his condition deteriorating. He reviewed the findings with our cardiologist in New Orleans before speaking with us but they both agreed that the echo results had worsened from the 29 week echo just a few weeks ago.

They noticed that now Zakariya's heart is contracting with less force and the tricuspid valve had severe regurgitation (as opposed to the moderate to severe regurgitation they saw on the 29 week echo).

In this week's echo they noticed some fluid accumulating around his heart and that his pulmonary valve (which had been working properly before) was now leaky. Dr. Colquitt stated that the combination of these symptoms and his rapid regression were ominous findings for a baby with HLHS.

A proper functioning pulmonary valve keeps blood flowing from the heart's lower right pumping chamber into the pulmonary artery and on to the lungs. A leaky pulmonary valve is when the valve begins to allow significant amounts of blood to leak back into the heart, causing the right pumping chamber to work harder in order to pump more blood. Basically, the more blood the pulmonary valve allows back into the right side of the heart, the more work the right ventricle has to do. Overtime, this extra work becomes burdensome for the heart to do and it's ability to pump blood may deteriorate and lead to heart failure. This is especially worrisome for Zakariya because he also has tricuspid valve regurgitation on the right side of his heart.

There were lots of quiet pauses as we all tried to make sense of what this meant for Zakariya, and the cardiologist really didn't have much of an explanation for us. Like getting the diagnosis of HLHS, they have no idea why his heart condition is deteriorating or what it will mean when he is born. With so little answers it's hard for them to say what the next move for us should be. Dr. Colquitt's recommendation was for us to return to New Orleans as planned and continue to go to my scheduled prenatal appointments (including weekly BPP ultrasounds), but to also go weekly for echoes.

At this point in a typical HLHS pregnancy (if that exists), they would only need echoes every 4 weeks, but because of the disturbing changes in his heart's development we need to watch him closer. Therefore, the doctor told us to be prepared for anything, especially a bad outcome for the pregnancy or delivery, but to still expect to move to Houston by August 18 at 36 weeks gestation.

He also couldn't answer many questions about what his change in condition meant for his candidacy for heart surgery and transplantation. They aren't allowed to discuss a babies candidacy for a heart transplant until after birth regardless, but he was certain that at this point the other 3-step surgery procedure was no longer an option.

A lot of other fine details we discussed but it was mostly hypothetical situations and, like most doctors we talked to, everything is circumstantial and considered on a case-by-case basis.

Dr. Colquitt was not confident that his heart condition would drastically improve by the time that Zakariya is born, but he hopes that it will level out and not continue to worsen in order for him to have the best chance of survival.

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Wednesday's Consults

After getting such heavy news, we tried to pull ourselves together to go to our Wednesday appointments. Thankfully these consults were easier to handle.

First thing on Wednesday morning was a meeting with our genetic counselor, Samantha. She broadly explained what HLHS from a chromosomal stance and how there is very little knowledge of what causes it in babies.

She asked us questions about family medical history and after mapping it out she noticed a low risk for Zakariya's condition to be caused by something genetic (since usually there would be a trend of congenital heart defects in our close relatives).

We knew most of this already but she did give us the hospital statistics and information on us having a slightly higher risk for having another CHD baby in future pregnancies. Then we got to meet our social worker for TCH, Hester. During this appointment we discussed some more of our concerns about moving to Houston temporarily and she was able to give us more information about things like parking at the hospital and housing options, like the Ronald McDonald House. Before we left we met nurse Christie, whom we had spoken with over the phone many times before our visit, and tied up loose ends concerning our future TCH appointments and paperwork.

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