Back to the Beginning

I didn't mean for it to take so long to post about everything that happened with me and the babies. It was harder than I thought it was going to be to get it all on paper. There is probably more information than anyone really wants to know but it was important to me to write it down so I don't forget.

We had our regular routine appointment to check on the babies on March 19th at 22 1/2 weeks. We did ultrasounds every 2 weeks to check the growth and up until then everything had looked wonderful. They kept an extra eye on the girls though since they were identical and shared a placenta. At this appointment they started to notice a difference in the girls' weight. That's the first sign of twin to twin transfusion. It happens when there are abnormal connections of blood vessels in the placenta so a portion of one twin's blood gets sent to the other twin rather than back to the mother. The smaller twin (Macie) loses a lot of amniotic fluid and has severe weight restriction. The larger twin (Ellie) gets more blood than needed and can have heart failure due to the extra fluid. It's very serious and with no intervention one or both twins can die.

There is a treatment for twin to twin transfusion. There is a procedure done in Seattle where they go in and laser the blood vessels that connect the twins. It is very risky and doesn't always work but it is the only shot for both twins to survive. Since the procedure is so risky, there are certain criteria for qualifying. We met all but one. The doctor wanted to keep a close eye on the  situation so he had us come back to Boise the following day. He told us to be ready to go to Seattle at any moment because the surgery to separate the placentas could only be done  until  24 weeks so if it was needed, we would need to get there as soon as possible.

The ultrasound on Tuesday showed slight improvement from the previous day. Not much, but enough to be further from qualifying for surgery. We were so frustrated because we just wanted to fix the problem. We felt guilty because we wanted things to get worse before it was too late for a solution. We were scheduled to return to Boise on Thursday to check the progress. Thursday's ultrasound was worse but still not quite bad enough. I was told to take it easy for the weekend and check back on Monday.

I was not feeling well on Monday. We had been in Pocatello and Idaho Falls over the weekend and even though I took it easy, I assumed I had just done too much. I couldn't really put my finger on what was wrong. I just felt crappy. The nurse took be back to the room. I had gained 8 pounds since the previous Monday, my blood pressure was very high, there was protein in my urine, and my reflexes were hyperactive. The nurse told me that I would be admitted to the hospital until the babies were born.

Next, we went in for our ultrasound. That's when we found that our little Macie no longer had a heartbeat. No one expected anything like that to happen so quickly. We were devastated. They doctor was also concerned for Ellie. If twin to twin transfusion was the cause of Macie's death, Ellie was at risk as well. Toxins from Macie could be transferred to Ellie and cause problems. I was only 23 weeks so delivery at that point was out of the question. We were told to decide what we wanted to do if Ellie started to look unhealthy. We could either deliver both babies too early and risk them both or do nothing and give Nate the best chance of making it closer to full term. We were not prepared for a decision like that at all. The other problem was my pre-eclampsia. If my health started to go bad, then the babies would come, no questions asked.

As the week progressed in the hospital, my health continued to get worse. I was having severe headaches that even heavy duty pain killers wouldn't touch and I started having tremors. My labs didn't look too terrible but they were starting to worry about seizures and stroke. We were praying that I could hold out as long as possible in order to give the babies the best chance we could. Early Sunday morning (April 1st) my doctor finally said it was time. I felt like a failure for not being able to hold out any longer but I knew that he wasn't going to let me argue or beg. Within a half hour I was ready and the doctor started the surgery.


Macie Christine and Ellie Carlene were born at 6:15 am. Macie weighed 14 oz and was 10 inches long. Ellie was 1 lb 6.2 oz and 11 1/2 inches long. Nate Tyler was born at 6:17 am and was 1 lb 5.9 oz and 11 1/2 inches long. The babies were taken to the NICU with Todd and the doctor started finishing up the surgery. I started to realize something was wrong because the babies had been out a long time and he still wasn't finished. After about 20 minutes, he looked over the drape and told me there was a problem. One of the placentas would not detach. He told me he'd tried everything he could but I had already bled much more than he was comfortable with and he was going to have to do a hysterectomy.

It was a very long day for poor Todd. After the surgery, I was sent to the ICU because I had lost so much blood. I don't remember anything else from that day and Todd was in a daze as well. Things didn't look great for any of us.

I received a total of 7 units of blood on Sunday. I used all of the hospital stash of O negative and had to use some O positive as well. My blood pressure was still pretty high but was controllable with medication. The plan was just to get me stabilized from the blood loss.

 I didn't wake up until late Sunday night. Todd was there trying to show me all of the pictures he had taken of the babies but I couldn't see anything. The pre-eclampsia had caused double/blurry vision.

I had hoped to get out of the ICU to see the babies on Monday but the doctors were concerned about my vision as well as my lungs. A chest x-ray had shown quite a bit of fluid build up and they were concerned about my breathing and oxygen levels. I had 1 pretty nice dip in oxygen that day which bought me another night there.

By Tuesday morning my vision had improved slightly and I hadn't had anymore major problems with oxygen levels. The nurse I had that day was wonderful! She worked so hard to get me out as soon as possible so I could get down to the NICU to see the babies. I am so grateful for her.

It was about noon by the time we made it down there. They were so small and attached to so many machines but they were beautiful. I was only allowed a very short visit that day since I was still pretty unstable myself. The nurses tried to update me on their problems and plans for treatment but I only remember basics. They were both on ventilators but Ellie's was a bit stronger than Nate's. I didn't find this out until later but Nate had pulled out his breathing tube at one point the day before and had to be worked on for quite some time before he was stable again. Nate's biggest problem was his blood pressure and Ellie's was her blood sugar. Both were too high and causing the bulk of the problems for them.

Wednesday started with the NICU doctor, patient care coordinator, and social worker coming into my room...not a good sign. They said Nate's high blood pressure was caused by a PDA in his heart. A PDA is a hole in the heart that all babies have but that normally closes at birth. It is very common in premature babies for that hole to stay open and cause problems. Ellie's was small and not much of a concern but Nate's was wide open and the cause of most of his problems. He needed surgery right away to clamp it shut. We were total wrecks that day but he pulled through and the surgery was successful. His blood pressure instantly improved and he was much more stable.

Thursday was a terrible day. I woke up feeling ok but as the morning went on I started to feel really tired. I had assumed that I had done too much the day before and decided to try and sleep during the afternoon. Around 1:00 I got up to use the bathroom. I was freezing so I grabbed another blanket and got back into bed. By the time the doctor came in about 5 minutes later, I was shivering uncontrollably and my temperature had gone up to 103 degrees. My other vital signs were unstable as well so I was sent back up to the ICU. An abdominal x-ray showed that my digestive system had shut down causing a UTI and sepsis. They also found a large blood clot that had collected behind my incision that they were concerned may have been infected as well. I was started on several IV antibiotics and kept for further testing.

Late that night my nurse woke me to tell me I had a phone call from the NICU. It was the doctor that was taking care of Ellie. She said she had very quickly taken a bad turn. She wasn't sure of the cause but her heart had stopped and they were unable to get it restarted. She said Todd was on his way over and then they'd bring her up to me. We were able to spend much of the night with her and we were so grateful for that time.

Ellie

I spent 2 more days in the ICU before I was released back to antepartum. I was still on IV antibiotics but was feeling better. The following day was Easter, 1 very long week since the babies had been born. We were looking forward to a relaxing day. That morning we got another visit from the doctor, patient care coordinator, and social worker. They had found a hole in Nate's intestine and he was leaking stool into his abdomen. It was likely caused be a lack of blood flow from before he had his heart surgery. He needed to have surgery right away to remove the diseased part and asses for further damage. They were concerned because if too much of the intestine was dead, they would be unable to do anything and he would not survive. Fortunately, they only had to remove 4 cm of intestine. That small amount should mean he won't have any long term effects. Such a blessing.

The following Wednesday, 2 1/2 weeks after being admitted, I was finally released from the hospital. I was still weak and bruised but overall feeling better.