March 20, 2010

Thank you for visiting Benjamin’s blog. It was created for us as a way to remember the great strides, or more appropriately the “baby steps” Benjamin is taking, and to keep family and friends updated on his progress in the NICU.

Some background information… At my 18 week ultrasound, I was diagnosed with a condition called Twin to Twin Transfusion Syndrome. You can visit this site to learn more about it: http://www.lifespan.org/hch/services/fetal/twin2twin/about.htm. Benjamin was the donor twin, while Stephen was the recipient. We were making bi-weekly trips to South Shore Hospital for ultrasounds. To our surprise, the condition remained at a stable Stage I for 6 weeks. At 24 weeks, we found out I had progressed to Stage III and needed surgery to try and save both babies. Our doctor could no longer see Benjamin’s bladder and he couldn’t measure an amniotic fluid pocket around the baby. Both boys were having blood flow problems as well. I was admitted to Women & Infants Hospital in Providence, RI, and on Wednesday, March 3 I had laser ablation surgery to cauterize the vessels contributing to the condition. Here’s a description of the surgery: http://www.lifespan.org/hch/services/fetal/twin2twin/treatment/laser.htm

On March 11, 2010, I was admitted to South Shore Hospital for 24 hour observation to monitor the boys’ heart rates. Doctors noticed several alarming dips from both babies and decided it was time to take them out. I had an emergency c-section and Stephen Alexander was born at 9:05 pm and Benjamin was born at 9:06 pm. Stephen weighed 1 lb. 10 oz. and was 12 ¼ inches long and Benjamin weighed 1 lb. 5 oz. and was 12 inches long. Apparently both babies let out a little cry, but I only heard Benjamin. Each boy had his own team of neonatologists and we were told both babies needed chest compressions for approximately 12 minutes before they could stabilize them and move them out of the operating room and into the NICU. We were told waiting even one more hour could have been catastrophic to both me and the babies. There were a couple of issues with my placenta and there were 4 knots in the boys’ umbilical cords.

After spending a few hours in recovery, I got to see them. They were the tiniest babies I have ever seen, but adorable with little heads of hair and gorgeous eye lashes. Both boys were on respirators, had arterial lines, IVs and other little contraptions all over them. We were told their outcomes were grim because they were worked on for so long after delivery. We were advised to have them baptized if that was our wish, and we did so on Friday, March 12.

Stephen was able to complete almost a full round of meds (3 doses) to try and close his PDA valve; however, he took a turn for the worse Sunday morning. Ryan and I sat by his isolette while we watched his doctors work on him. We were told he wasn’t going to make it and were taken into a private room where I got to hold my precious baby as he took his last breaths. He passed on March 14, 2010.

Losing Stephen has been absolutely devastating, but we’ve been trying to remain strong for his brother and sister.

Because Benjamin wasn’t producing his own amniotic fluid inside the womb, protein levels in his kidneys were extremely high and he wasn’t gaining renal function. We were on a time clock at this point because Benjamin also needed the meds to close his PDA valve, but doctors were unable to give them to him until his protein levels came down and he started urinating. For days we prayed for him to pee and I believe we finally got a few drops on Sunday, March 14. It’s kind of a blur at this point, so I’m not quite sure when he started the medication to close his valve, but he finally did.

On a side note, we have been told that there are ramifications associated with everything they use to treat Benjamin. For example, the longer he remains on the ventilator, the more damage to his lungs. The more they dial up or down his vent settings, the more damage could be done to his retinas. Also, the medicine given to him to close his PDA valve (which is actually ibuprofen) could cause perforations in his bowels.

He’s a feisty little guy and initially his blood pressure was all over the place so he was also given doses of dopamine and fentanyl to regulate his pressure and calm him down a bit. This also allows him to be on a lesser amount of oxygen. At a few points he was actually breathing room air which is 21% oxygen.

Back to the PDA valve… only 30%-40% of valves close on their own after the first round of treatment. Dr. Kubicka told us she didn’t think it was closing because Benjamin’s blood pressure was still fluctuating. After his third dose, they performed an ultrasound and it was inconclusive. They thought one side may have closed so they held off on giving him a second round of meds until they received the formal report from Children’s Hospital. His results came in the following day and they concluded that the valve was in fact closed. We couldn’t have been more proud of our little man!

Our visit to the hospital on day 7 was one full of anxiety because we knew this was the day they were going to ultrasound Benjamin’s brain. Doctors told us they would not be surprised if they found a bleed because of the trauma he went through the night he was born. There are 4 stages of brain bleeds and although Benjamin had two (one on each side), they were only stage 1. Dr. Kubicka said they should go away on their own and he’ll get rechecked at day 30.