AGE: 2 weeks (26 weeks, 6 days gestation)
Lochlan: Weight is 780 grams/1 lb. 11 oz. (Birth weight: 760 grams/1 lb 10.8 oz.)
Lex: Weight is 780/1 lb. 11 oz. (Birth weight: 760 grams/1 lb 10.8 oz.)
As we were walking into the room with the neonatologist, he said, “I don’t have any bad news to share,” which made us really excited. We had previously been told that the ibuprofen therapy had about a 30% chance of working, but that the doctors wanted to try everything possible to avoid the last option which is heart surgery. We have been optimistic, but also realistic about the likelihood that the ibuprofen is working. Here is my summary:
7PM update: Both of the boys had echocardiograms this morning (08/01/17) and the doctor told us that the results show the Ibuprofen therapy is working. Lex’s last echocardiogram on 07/28/17 showed that Lex’s patent ductus arteriosus (PDA) was large and his ventricles were swollen because his heart was getting tired from overworking. Lochlan’s last echocardiogram on 07/29/17 also showed a large PDA. At the time the echocardiogram was done today, Lex had completed 3 doses of ibuprofen and Loch had completed his second. Both twins' PDAs have gone from large to moderate with no swelling of the ventricles. This is very hopeful than both will further benefit by continuing another round of therapy.
Lochlan: Prior to starting the ibuprofen, the doctors were very concerned about the chance that the medication would cause Lochlan’s intraventricular hemorrhage (IVH) to bleed more. This is why the echocardiogram was done after the second dose of ibuprofen instead of waiting for the third. They want to stop ibuprofen if it was not working, but it is working to reduce the PDA and there is nothing that suggests the brain is continuing to bleed. This suggests the brain IVH has stopped and that a second round of ibuprofen will be very unlikely to cause further bleeding. Lochlan did have low hematocrits (24.7) today which are likely caused by the PDA. He was given a red blood cell transfusion which he took very well and is now back on track.
Loch’s game plan – Complete another 3 doses of ibuprofen over 72 hours. Do a follow up echocardiogram Monday (08/07/17) to see if the PDA has further reduced. Once off of ibuprofen, we will begin feeding him again which is key for his growth.
Lex: The echocardiogram has shown that Lex’s heart is not strained and the PDA is reduced in size to moderate instead of large. Lex, however, is dealing with low blood pressure that has been treated with dopamine since Sunday (07/31/17). The range of dopamine is 2 – 20 and he is on a 14 which is great because it is working, but we need to get him off dopamine to avoid ligation surgery. The heart is pumping the blood to the lungs and the body which is taxing his heart; all likely caused by the PDA. His next echocardiogram will be Monday (08/07/17). Even if the PDA is small and he is still on dopamine then surgery will be necessary to get the heart to function properly. For now, we want to exercise all options before we have to do surgery which is why he will be doing another 3 doses of ibuprofen over the next 72 hours. Lex has had high bilirubin counts since 07/31/17 and has been on phototherapy to treat the jaundice. We gets checked in the mornings once a day.
Lex’s game plan - Complete another 3 doses of ibuprofen over 72 hours in hopes that the reduced PDA will ease the heart and raise the blood pressure so he can get off dopamine. Reduce and eliminate the need for dopamine. Do a follow up echocardiogram Monday (08/07/17) to see if the PDA has further reduced. Once off of ibuprofen and dopamine, we will begin feeding him again which is key for his growth.
Lochlan resting post care time.
Lex in his tanning bed working out his bilirubin counts.