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What It's Like to Have Preemies Healing From TTTS

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After 48 hours of close monitoring, three to four blood tests a day, heart ultrasounds, chest X-rays, kidney and renal artery ultrasounds, brain ultrasounds and machines monitoring every breath and heart beat, we are able to get a big picture on what the main issues are with our twin babies, Peter and Maurice.

The parents are allowed to attend rounds, which happen twice a day. The NICU team meets and reviews every detail and sets a plan for the day. The team is beyond compare. The nurses are not only incredibly skilled, but they also have made every effort to make me feel these boys belong to me. They encourage questions and teach me how to touch. I’m blessed to have such care. At night, they follow up on all the results and tests from the morning. Going over this with the doctors allows me to ask questions and have some peace knowing their status.

Basically, although premature, the main issues they face are not due to prematurity. The issues are secondary to the damage from twin to twin transfusion syndrome (TTTS).

My “donor” twin, Maurice, was giving everything to his brother, Peter. All the nutrients, blood and fluid went to his twin. He has struggled with growth from day one. This caused a tremendous amount of stress on his heart and even some damage. He had high troponin levels at birth, which are a sign of injury to heart muscle. His heart function on his first echo showed a mild to moderate decrease. Because he had so much stress on his body and his heart could not function correctly, his kidneys could not get the blood flow they needed to function properly. In utero he was unable to produce urine and once outside, the problem continued. The first day he made no urine. The body is very smart. It pushes blood to where you need it most. His weak heart sent the majority of his blood to his brain and lungs, the organs that are most critical. The secondary organs like the kidney and liver suffered from decreased perfusion. He was started on Dobutamine and Dopamine to help his cardiac and renal perfusion. Forty-eight hours later, his repeat echo showed improved cardiac function and he is making urine on his own! His medication is stopped and he is now only on caffeine, which is used in all preemies because they sometimes “get tired and forget to breathe.” His kidney function and cardiac function is still not perfect, but we are trending in the right direction. We are also having some issues balancing electrolytes, but the team feels this too will resolve with close monitoring and adjusting. His sodium is the main issue because if it drops too low, he is at risk for a seizure. It seems to have gotten a little better from this morning and they are watching very closely. He is also jaundiced from too much bilirubin, but this as well is a common issue in preemies and with phototherapy should improve.

Peter is our “recipient” twin. He was receiving too much blood and fluid and suffered from volume overload. The heart is a muscle and the increased volume made the heart have to work much harder than usual. Like any muscle, when it works hard, it starts to grow or thicken. He now has left ventricular hypertrophy or an “enlarged heart.” The enlargement is causing an outflow obstruction and making it difficult for the blood to perfuse other organs. Again, like in Maurice, the body is smart and pushes blood to the heart, lungs and brain first. Just like his twin, the first organ to show signs of decreased blood flow is the kidneys. His kidney function is decreased, however, it seems to be improving. He also is having some issues with electrolyte imbalances, but tonight his sodium issue resolved and this is a big step. He does have jaundice too and is under lights to help his body break down the bilirubin.

The good news is that they both no longer are fighting against TTTS. Peter’s heart no longer has to pump this tremendous overload of fluid and Maurice is no longer forced to have such a strain on his. They are in an environment where they are getting the support their little bodies need to heal and repair. The heart is already showing some signs of improvement, and although the kidneys are usually the first to show signs of damage, they are the quickest to heal!

Today we had some victories: Maurice is off of Dopamine and Dobutamine and is making urine with an improved heart function and Peter’s sodium normalized and his feet and body are nice and pink with no signs of perfusion defects. ( It was very scary to watch them turn blue). I am even a little stronger today and walked back from the NICU instead of sitting in the wheelchair.

Every day we will have ups and downs — today I’m so thankful for the ups. I was able to blow them kisses and touch their tiny hands before I left them to come back to my room to go to bed. My heart aches for them already — dream sweet dreams my boys, mommy loves you and is so proud of you.

Follow this journey at Peter & Maurice.

Getty image by nattanan726

Originally published: October 29, 2018
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