The first trimester was rough, I had plenty of morning, afternoon, and evening sickness, but it all passed in the second trimester. We took a “Twins” class at Swedish Hospital and met other couple who were also expecting twins. We were learning to prepare ourselves for two babies, if you ever really are prepared! At 20 weeks, we went to our ultrasound check-up and found we were having two girls. We were both thrilled! Everything appeared normal at that time and my belly measured normal for that time. Immediately after the appointment though, I started growing at a very fast pace. I began calling and asking for more check-ups, because I didn’t feel like things were right. I was told there really was no reason to have extra appointments. I was only having twins. I should expect to be large! They would let me come in though, and my belly was measuring larger and larger. By 25 ½ weeks, I was measuring 38 weeks. I honestly couldn’t figure out how I was going to get any larger than I already was, with a whole trimester to go!
The day I turned 26 weeks, I began spotting and having contractions. The doctor reluctantly agreed to have me come in on the Saturday to be looked at. We went to Littleton Hospital to meet him, where they discovered I was in labor. They put me on meds to stop the labor. The nurses spent hours looking by ultrasounds and heartbeat monitors to find the babies. They would find one, then lose it. They couldn’t see Baby A because there was so much fluid. Right away, the high risk doctors came in and told us about TTTS. Ironically, it was the same day the first TTTS Race for Hope was going on and they had literature to give us on the subject.
Baby B was saran wrapped and Baby A was swimming in a ridiculous amount of fluid. They did an amniotic drain and took out 5 ½ liters before I was in too much pain to continue. It was obvious; I wasn’t going home until these babies were born. They would need a lot of observation. My OB looked very sheepish and said good luck, and I have never seen him again. I never hope to. I was transferred to P/SL to be kept a close eye on. We were hoping to make it to 28 weeks and then even further if possible. On reaching P/SL, they did another drain and took out 2 ½ more liters from the sac…8 total! No wonder I was so huge!
Pediatric cardiologists did ultrasounds on Baby A’s heart to see how much damage was done from being in so much fluid. There was some thickening, but they were very optimistic about it going back to normal with time. They didn’t even check Baby B. In retrospect, they probably weren’t thinking she would make it.
I settled in my room, ready for the long haul, heartbroken to be away from my 20 month old at home. I didn’t have much time to get homesick though. On Wednesday, I began experiencing very bad heartburn, blurred vision, and a terrible headache. After a whole day of complaining about it to the nurses, they also discovered I had extremely high blood pressure, crazy low potassium levels, and my liver was HUGE. I had gone into toxemia, a kind called HELLP Syndrome, which the doctors feel was my body mirroring the trauma in my belly. I was put on meds to hopefully stop seizures, stroke, or coma, and given a blood transfusion. They would watch through the night to see if this could be stopped. It was a sleepless night, and by morning there was no improvement, so they went into an immediate c-section surgery.
At 10:19, on 11-11-04 Baby A (Tessa) and Baby B (Tara) were born (at 26 weeks, 6 days). Tessa was 2 lbs. 3 oz. and 13 inches long. Tara was 1 1b. 12 oz. and 12 inches long. They were whisked away to the NICU, and we found out later that Tara had to be resuscitated… twice.
This was the beginning of a very long journey. My medical trauma improved, and over the next couple of months, I made it back to normal. Tessa spent 9 weeks in the NICU. She had a few setbacks, but overall she was on the growth plan. Her heart did go back to normal, which was great news! Because of being premature, she developed an allergy to formula, and needed a special prescription formula until she was about a year old. Today our Tessa is 21 months, and quite a handful! She walked at 13 months, and is a little chatterbox. She does whatever her big brother does. There is no resting while Tessa is awake! She has a smile and a giggle that warms our hearts. She is a true miracle.
Tara’s road hasn’t been quite as easy. At 5 days old, she required heart surgery to fix a blood vessel that hadn’t closed. During surgery, they nicked a nerve to her vocal chord. For months, she had no voice, until it repaired. She also had a hole in a lung, which did close. Soon after birth, they discovered her kidneys didn’t develop. They did daily blood tests on her and found she was getting worse and worse. We were told to prepare for the worst. They did every medication they could on her, and she received more blood transfusions than I can count. Finally, one day, abut 5 weeks after birth, she turned a corner. Her kidney numbers began to slowly improve. We had hope! If we could get her to 6 pounds, she could be put on dialysis. Her NICU stay was a true rollercoaster. She would make 1 step forward and take 2 steps back. She also ended up with the same milk allergy that required prescription formula. She had stage 2 ROP on her eyes, she couldn’t get off oxygen, her kidneys caused her bones to be extremely brittle and she ended up with breaks to her rib and collarbone, and then one day started the reflux. Everything she ate came right back up and she was miserable. Finally a nissen and g-tube surgery was done. After 4 ½ months, our little girl was allowed to go home.
The year and ¼ since she has been home hasn’t been easy, but we definitely wouldn’t trade a day with our daughter. She has been hospitalized 4 times since her NICU days, both for surgeries and sickness. She was put on peritoneal dialysis in August, 2005. We went to a 2 week training to learn how to do it, and now she has dialysis every night at home. Her nissen came undone and had to be repaired. She has OT/PT/Speech weekly and we are hoping by the time she is 2 she may be walking. She doesn’t eat anything; all nutrients go through her g-tube. We have been told that most people with kidney failure have no appetite, so this is normal. She finally got off oxygen one month ago, but in trade, we also found out she has two small holes in her heart. They want to just watch them for now, but may have to surgically repair them one day. We wait patiently for her to reach 35 pounds so we can list her on a kidney transplant list. We hope by the time she is in kindergarten, she will have a kidney. The poor kid has medications and shots all the time, but never complains or cries. She is so good natured and happy. She tries to do everything her sister and brother does, and never gives up.
Both girls finally got the green light by doctors to go to daycare/preschool. We go to one that takes special needs children. The girls now enjoy the day where their brother goes, and they are learning so much from the other children and teachers. We are so lucky and blessed!
Thank you for listening to “our story.”