Katrina Drew, The Twins, & TTTS
On November 29th, we were diagnosed with Twin to Twin Transfusion Syndrome, stage 1. Katrina was put on bedrest and medication, and returned a week later for her follow-up. At that appointment, we learned that the TTTS had rapidly progressed to stage 4 due to signs of heart failure in the recipient twin, and needed emergency fetoscopic laser surgery as fast as possible. We immediately drove from St. Louis to Cincinnati Children's Hospital and had surgery later that night. The surgery went well, with both boys starting to show improvement about 2-3 weeks following surgery. Connor (the recipient) had the more severe symptoms, with subsequent damage to his heart due to the TTTS. Katrina carried the boys all the ways to 36 weeks/4 days, far exceeding all expectations that had been set by our surgeons in Cincinnati. Both boys were born, with Timothy in the full term nursery, and with Connor going to the NICU with some expected and unexpected complications, including being put on a ventilator. We just posted our latest update on 4/4/13.
Katrina's pregnancy went exceedingly well beyond all expectations set by our MD's. Through consistent bedrest and vigilance on her part, she was able to carry the boys all the way till 36 weeks/3 days. After birth we had some expected and unexpected complications, with Connor going to the neo-natal intensive care unit in serous condition. Update is below.....
Update on 4/4/13 from Jonny
Here's an update on Katrina, Timothy, and Connor. The boys were born on 4/3/13, at 10:53 and 10:54 AM. Katrina's water had broken the morning prior, and we had been at the hospital for about 24 hours. As with all twin pregnancies, Katrina had to deliver in the operating room (OR), but wanted to try a vaginal delivery. After about an hour and a half in the OR, the doctor advised that we switch to a C-section, and about 20 minutes later the boys were born.
Timothy was born at 6 lb 3oz, 18 and ¾ inches long. He was doing very well at time of birth, and has been able to go to the full term nursery. He is having some issues with his blood sugar and feedings, but overall has been doing well.
Connor was born at 6 lb 2oz, 19 inches long. He was having some issues with his breathing, and was taken to the Neonatal Intensive Care Unit (NICU). In the NICU, they attempted using supplemental oxygen to assist his breathing; when that wasn't enough they put him on a ventilator. The NICU doctors were uncertain of why he was having so much difficulty breathing, as he and his brother's lungs are similarly developed. They ran a bevy of tests, including x-rays, ECGs, and a brain ultrasound (thinking that he might have had some brain-stem issues that were keeping him from breathing well). The x-ray and brain ultrasound looked OK. At this point they are still unsure, but think that the problem breathing might be due to Connor's heart damage from the Twin-to-Twin Transfusion Syndrome. They also placed him on nitrous oxide to help dilate the blood vessels in his lungs. This will help reduce the work his heart has to do. They are trying to keep him somewhat sedated through medication as well, so that he can relax and help his heart heal.
Please continue to keep our family in your thoughts and prayers. For Katrina as she recovers from major surgery and exhaustion from labor, and tries to keep up with feedings for Timothy and going to a different part of the hospital to see Connor. For Timothy's blood sugar and weight to do well. And for Connor's heart to heal and for his breathing to stabilize, as well as giving the doctors wisdom to know what is going on. And for myself trying to keep up with everything.
Thanks from our family!
An update on Katrina (22 weeks!) and the twins"¦
The last week has been crazy busy/stressful for us. Now that the laser surgery has been performed, we are in a "˜wait and see' mode to see how the boys respond. The main concern is to monitor the function of their hearts and the amounts of fluid in their bodies (especially in Baby B: the recipient twin). We will be on a schedule where we receive an ultrasound every week, and an echocardiogram every other week. One of our surgeons cautioned us that improvements would most likely occur over a 4-8 week period (we are now 17 days after surgery).
So"¦on to the appointments we had Thursday. The amount of fluid (hydrops) in Baby B's body has decreased. He still has a significant amount of fluid in his stomach, but he no longer has noticeable fluid surrounding his heart, lungs, or skin. Improvement in cardiac function is very difficult to measure, because some of it is very subjective (descriptive). One of the few objective measurements (using numbers/data) that they use is heart size. Normally functioning hearts take up about 30% or less of the abdomen. When a heart is very sick, it increases in size because it has trouble keeping up normal heart function. At the time of surgery, Baby B's heart made up 43% of the area of the abdomen. On Thursday, the pediatric cardiologist reported that the heart had decreased to only 38% (great news!). And even though subjective reports from two different doctors (Cincinnati vs. St Louis) are very hard to compare, he rated Baby B's heart problems as moderate (which is greatly improved from the grading of "˜severe problems' at the time of surgery!). And Baby A continues to do abnormally well considering the circumstances, and the pediatric cardiologist rated his heart as nearly normal!
We are trying to be cautiously optimistic. We know that we still have a very long road ahead. Katrina will be on bedrest for the duration of the pregnancy, and there is still a very likely possibility of premature births and NICU stays. She is currently at 22 weeks, and we are hoping to make it to 30-32 weeks (that's one of the goals our team at Cincinnati set for us). But the boys are doing about as well as could be imagined at this point in the process; based upon how severe their problems were at the time of surgery and how close we were to losing them. We continue to be incredibly thankful that the entire team at Cincinnati Children's came back in from their homes to perform surgery just a little before midnight.
On a side note, this has been one of the most stressful weeks of our lives. Due to the way that the schedule worked out, after our doctor appointments on Thursday, we actually closed on our new house later that day, and moved in yesterday (Saturday). We are incredibly excited to have a home that is big enough for our growing family, and also excited that I am only 5 minutes away from work now.
We feel incredibly blessed by the outpouring of help and concern from friends and family. I can assure you that we are incredibly thankful, even if we had not had a chance to respond or thank you yet. Please continue to hold Katrina and the boys in you prayers.