"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Wednesday, March 31, 2010

March 31, 2010

After 2 or 3 days of rest from Saturday’s surgery, Benjamin had an ultrasound of his head today which showed some increased brain swelling (cerebral edema). Of course we were very concerned, but the Dr’s explained that with such difficulties during the previous surgeries, this was to be expected. A few work ups on Benjamin also showed some traces of blood in his lungs, which couldn’t immediately be explained. I was however given the opportunity on Wednesday night to hold my baby for over an hour. It felt so good to have him in my arms again.

Saturday, March 27, 2010

March 27, 2010

Our little trooper finally started putting out some pee this morning! He went in mid-afternoon for the second surgery and did very well. Dr. Buchmiller was able to pull out a stoma or ostomy before the perforated section of bowel. They left spaces between his incision (which is about an inch and a half wide) so any fluid buildup would wick out.

The next few days went well. He was doing a lot of breathing on his own over the vent and his vitals were looking good.

Friday, March 26, 2010

March 26, 2010

Benjamin was taken into surgery around 12:45 this morning. Ryan and I were the only people in the huge surgical waiting area on the 3rd floor… I can’t even explain to you how eerie it was. Dr. Buchmiller came out at about 2:30 am and told us that Benjamin was very very very sick and they couldn’t complete the surgery because he went into cardiac arrest and lost a lot of blood. They were able to revive him, but had to leave his little tummy open. She said the top 1/3 of his bowel looked fine. After that, she saw two perforations which she stitched up. He had meconium leaking in his belly and she tried to remove as much of that as she could. She had to stop there so we don’t know what the bottom part of his bowel looks like. Her hope was that he would regain function of his kidneys so he would have better blood flow to buy her more time in surgery, and she could go in and finish the ostomy on Sat.

Thursday, March 25, 2010

March 25, 2010

We buried Stephen this morning which was absolutely heartbreaking. But we barely had time to grieve because Benjamin wasn’t doing well so we had to get back to the hospital. Benjamin’s stomach had become distended and had turned blue. After looking at the x-rays and not seeing any air expelling from his bowel, but having the condition worsen, his doctors collectively decided it was time to transport him to Children’s Hospital. He arrived in Boston around 6:40 and they continued to monitor him and perform x-rays. We met Dr. Buchmiller and she told us they had to go in and do exploratory surgery or else Benjamin wouldn’t make it. Of course in the midst of all this, he went into kidney failure again.

Wednesday, March 24, 2010

March 24, 2010

Today Benjamin was put back on the CPAP machine (they had tried maybe a week ago and he was able to stay on it for 10 hours, but because he wasn’t clearing out enough carbon dioxide, he was put back on the ventilator). He had a hard time calming down so he’s on the fentanyl drip again as opposed to the boluses he was given over the past few days. The CPAP machine provides him with constant bursts of air through tiny prongs in his nose, but allows him to breathe on his own. I was there this afternoon for a little over an hour and he had 2 apnea spells (where he stops breathing and his blood pressure drops). Although this machine makes me nervous, it’s good for him because he can strengthen his lungs and make them healthier. They put his feeds on hold until he adjusts to the machine, then they’ll start him up again. He’s been tolerating his feeds well and we’re hoping that will continue.

Tonight was really tense and extremely emotional. Benjamin had another spell and obviously he couldn’t tolerate the canula they put him on so they wanted to put him back on the vent. Dr. Zahr was called in to help intubate him because he clamped up when others tried.

Tuesday, March 23, 2010

March 23, 2010

Ryan got to hold Benjamin tonight and he loved it. Again, Benjamin was right at home with him and very calm. He obviously knows his parents!

Monday, March 22, 2010

March 22, 2010

I got to hold Benjamin for the first time tonight. It was a bit scary because he was connected to the vent and because of all the wires and lines attached to him; not to mention how tiny he is. We both needed it though. He was awake and happy and I was happy. The minute his nurses put him back in his isolette he fell asleep.

We also learned tonight that our little guy has a nickname. One of his nurses, Mike, said he was kicking his legs so much at one point that he started calling him “Chief Running Ben”, “the Chief” for short. We have a feeling that’s going to stick with him.

Saturday, March 20, 2010

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.