Our Visit to Levine Children’s Hospital

Yesterday’s visit to Charlotte was a whirlwind. I started out with the Maternal Fetal Medicine team to have my ultrasound. Both boys are transverse and are making me extremely uncomfortable but they also have a lot of extra fluid around them in utero. Initially, because of this, they wanted to admit me to the hospital for 48 hours because of the excess fluid. It can bring on preterm labor so they wanted to give me steroid shots for the boy’s lungs and then do an amnio reduction, which takes off excess fluid using a needle. The tons of fluids I got last week in the hospital could have contributed to this.

I got to triage, into a gown, babies on the monitor, and then all the sudden another MFM doctor comes in and pretty much says you don’t really need to do this. Honestly, the fluid will likely just come right back. So it’s up to you but we don’t think it’s necessary. It was a complete 180. We were shocked and they said we could be released from triage and be free to go to our other appointments. Needless to say, that was a roller coaster in itself. Tiffany Camp (our Nurse Navigator for Fetal Cardiology) was so kind and helpful and thank goodness we had her helping us through all this!

We then headed to our fetal echocardiogram. Caleb’s heart is evolving and showing kind of what we expected. The left ventricle is smaller than the right but is still a decent size though it isn’t pumping due to the pressure. This pressure is causing the left upper chamber to enlarge and blood flow to regurgitate up through the mitral valve. Because of this, instead of blood flowing from the right chamber, through the atrial septum, to the left side, it is flowing the opposite way and now it looks as though the atrial septum is restrictive. This is something we have to take very seriously and watch because a restrictive atrial septum can place a lot of pressure on the pulmonary veins and cause issues with the lungs. If the hole for the atrial septum becomes more restricted or closes completely, they have to immediately take him to the cath lab and use a catheter with a balloon to open up that atrial septum more and relieve the pressure. This ensures that blood flow balances and doesn’t affect breathing. If this had shown up much earlier in pregnancy, there would be more complications. We’re praying it stays open and doesn’t get any smaller.

Doctor Walsh (our Pediatric Cardiologist at Baptist), Doctor Cook (Levine Pediatric Cardiologist) and one of the interventionists spoke after we left and agreed that because it’s likely he will need a cath right after birth to open up this atrial septum more, they want us to relocate to Charlotte by 35 weeks gestation. I’m currently at 33 weeks. They need us to be able to deliver right away should I go into labor before 38 weeks. They feel as though a c-section would be best because of this most recent finding and are going to discuss the best date for this to take place. Heart Doctors from all around have patient management conferences to discuss in-depth patient cases. Our case is being brought up this Tuesday and we will hear more about this then. They are establishing a plan with the Ronald McDonald House and the Hospitality House to get us housing during this time. We have not heard from our ped. cardiologist about Boston. We knew they would likely need fetal echocardiograms further along, which would include yesterday’s and one we will do again on February 10th at Levine. It is looking like the initial procedure will be done in Charlotte, and if he qualifies for a bivent repair later after birth and we all feel that it’s a good option, then we will cross that bridge at that time.

We are still trying to digest things bc I know another issue like a restrictive atrial septum adds more risk. I’m glad there is some semblance of a plan though bc there really wasn’t one even when we left after our appointments. It’s scary. We feel all of the sudden thrown into warp speed and dizzy from trying to wrap our minds around things. We will need to determine how relocation will go. Doctors want to be precautious, and want me to be very close by. This means I could be there for 2-3 weeks before actually delivering though. We are very fortunate to have family and friends to help with Aaron, though the idea of being away from him and not knowing the time frame of that is absolutely heartbreaking. Thank goodness Levine is only about an hour and a half away. We have no idea what things will look like with Gabriel once they are born. Depending on their size, breathing, eating etc. he may not need NICU time. This means that once we are discharged, he obviously goes with us wherever we are staying. Where we stay may change depending on our needs, etc. He can’t go back into the hospital with us to visit Caleb though so that will be another balancing act.

Some of these things we don’t have answers to. We might not have answers until the week of, or even the day of. It’s quite overwhelming but I’m forcing myself to think of the other side of the coin in all of this. We are blessed to be in a place, with extremely talented doctors, that keep us informed and prepared for the exact care that Caleb needs. We are getting a chance to be prepared, whereas many families in this situation are not. We have teams looking after us, communicating from hospital to hospital, and making decisions for our sweet babies. God has orchestrated a plan for us. I will be very close by in case I go into labor. If I wasn’t, and didn’t have time to get to Levine, then that could be very bad for Caleb. Immediate response might be needed for a catheter and you need to be in a place equipped to do that. Instead of this being a terrifying thing to prepare for, we need to see this as God’s step in getting us to be in the right place at the right time. What we don’t understand can certainly be God working on our behalf, for our good.

As things seem to go quicker, to spin around us, as information comes at us overwhelmingly, it can feel very easy to feel quite small. I found myself feeling like such a small person yesterday in a large world I’m so unfamiliar with. Adam and I have met with so many doctors, been in so many ultrasound rooms, and seen so many buildings. The truth is God held our hand when walking through each door. He sat beside us in each meeting, in each consultation. He wiped each tear that was shed. He continues to do so every day.

Prayer Requests

  • For fluid levels to go down and preterm labor risks to decrease.
  • For Caleb’s restrictive atrial septum to not get any smaller and to even open back up more.
  • For damage to Caleb’s heart to slow down and the pressure be relieved.
  • For God to help us make the best decisions for our family about how to navigate relocating and how balance the days and weeks to come.
  • For all the doctors and nurses that God has put in our path helping each other and helping us to receive the best care possible.

And I prayed and prayer that has been repeated hundreds of times since then. In fact, it has become a prayer mantra: Lord, surprise us… In His omniscience and omnipotence, God has determined there are some things He will only do in response to prayer. The Bible puts it bluntly: “You do not have because you do not ask God.” If we don’t ask, God can’t answer. It’s as simple as that. The greatest tragedy in life is the prayers that go unanswered because they go unasked. I don’t pretend to understand where the sovereignty of God and free will of humans meet, but it motivates me to work like it depends on me and pray like it depends on God. And if we do these two things, God will keep surprising us.

“Draw the Circle” by Mark Batterson

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