I recommend to start reading the blog from oldest to newest, to get the "Full Story". It starts before diagnosis, and tells a pretty good story of our journey through her diagnosis, fetal surgery, and beyond.
Photos Slideshow of Ruth from pregnancy to 1 month.
SUMMARY (pregnancy to 1 month old)
We had an uneventful pregnancy, with several normal ultrasounds and normal bloodtests. We were debating on finding out the sex of the baby, we already had 4 girls and had found out during pregnancy with each of them. We had decided NOT to find out, to keep it a surprise, but a couple days before our 20 week ultrasound I had a change of heart. We decided to find out.
Our OB does her own ultrasounds (which I love, they can tell you everything right then). During the 20 week ultrasound, she told us it was a GIRL! Our fifth girl, we were very excited! Then she spotted clubbed feet, which one of our other daughters had been diagnosed with. No big deal (to us), that's easily fixed. But then she couldn't get a good measurement on the head. It kept coming back too small. She felt like she should send us over for a level 2 ultrasound next door, and called and got us in there that afternoon. My husband and I went to lunch, pulled the 2 youngest girls out of preschool and took them to a drop off play center, prayed, spilled the news to family and friends about the baby being a girl. And headed back. The perinatologist did a level 2 ultrasound, and came in, said, yep, your baby has spina bifida. He showed us the "lemon sign", and the opening on her spine. He wouldn't tell us the level of the opening, only that it was low, and that was very good. He immediately told us about the MOMS trial - Management of Myelomeningocele Study (http://www.spinabifidamoms.com). We left the office, sat in the parking lot, and cried. We still needed to pick the girls up, and I was in no shape, so Matt dropped me off at home and picked up all the girls from school.
Once I could gather myself, I called the number given to me for the MOMS study, and spent over an hour on the phone with the coordinator. She took my history, told me all about spina bifida, and told me about the study. The study was basically looking at comparing an in-utero surgical closing of the spine to the normal, after birth, surgery. You had to meet certain criteria to qualify, and you could only receive the in-utero surgery through this trial. No other hospital would perform it. She told us what she needed from us, I needed to have an amnio to make sure it was isolated (no other issues with the baby), send her all my records, etc. The surgery needs to be done before 25 weeks 6 days gestation, and since I was already almost 21 weeks, time was short. Once we got all the information to her, she sent it off to be reviewed by an independent group of doctors (ones that do not perform the fetal surgery) for approval or rejection. We also had a fetal mri locally to give us more information about the baby, which was mostly good news (sacral opening, minor brain issues).
After we made it past the first approval process, and got past some insurance issues, we flew to San Francisco for further evaluation for the trial. We went through an exhausting 2 days of medical tests, including another fetal MRI that was over 3 hours long! You also meet with all the specialists, and they are very clear about the risks involved. The fetal surgery is open, meaning they open your uterus (like they would in a c-section), turn the baby, and perform surgery on the baby through that opening. There is lots of risks to the mother as well as the baby with this surgery. That is why it is still in a medical study. The biggest risk is prematurity.
At the end of it, if you qualify, you then have a choice if you want to continue. We had already decided, if we qualified, that God's plan was for us to continue with the randomization. Once you say "Yes, I want to continue.", they go to a computer, push a button, and it prints out a sheet that either says "Prenatal", or "Postnatal". It was frustrating not having control when we felt this surgery was the best chance for our baby, but we also felt the randomization was a good way to give it up to God.
We randomized to Prenatal. We would have surgery in less than 48 hours.
That Thursday night we were admitted into the hospital for an iv and fluids. The surgery would be the next morning. That morning was mostly just waiting around for them to be ready for us. Once they came for me it all happened very quickly. I was given a few medicines and an epidural, taken to a different floor, said goodbye to my husband, and was put to sleep. I remember waking up in the operating room afterwards, feeling nauseous, then waking up back in my hospital room, again feeling very nauseous. The surgery went well, they were able to close her back without having to use a skin patch.
They kept me on the epidural for 3 days for pain management to help prevent contractions. Pain was a big issue for me, I ended up with a morphine button, and was too loopy to talk to anyone for about a day. They watch me closely for contractions, and the baby for any signs of distress. After about 5 days, I was discharged to a local Family House (about 10 blocks away).
Since premature labor is a huge risk with that kind of surgery, I was kept on anti-contraction medicine and weekly high risk ob visits, sonograms, and non-stress tests. Everything continued to look great, but around 31 weeks, I started feeling what I thought was bladder pain. Since everything looked good with the baby and on the sonograms, they sent me to have a renal sonogram.
That night, I started having some minor contractions, and around 5 in the morning I noticed some blood. I called up to the hospital and talked to the nurse (at that point I wasn't having contractions), and she recommended I wait and watch, and call back. Around 7 AM, I talked to one of the MOMS nurses, and she sent me straight up to labor and delivery. After about 2 hours, I was admitted, given anti-contraction medicine through my iv, and also a steriod shot to help the baby's lungs develop in case they couldn't stop the labor. I wasn't worried, everyone felt that Matt didn't have to rush to fly up here. I felt like they would stop it, and I would be out of the hospital in a day or two. Well, around 11 PM that night, my water broke, and things got very serious. Since my uterus had a fresh scar on it from the fetal surgery, there is a high risk of rupture with continued labor.
At 1:50 AM, on Thursday July 22nd, my sweet baby Ruth was born via c-section at 31 weeks 4 days gestation, weighing only 3 lbs 15 oz, and 16 inches long. She needed a c-pap to start her breathing, but was quickly weaned off and needed no help.
The NICU experience was by far one the hardest times in my life. Ruth was doing very well, but being so premature, she needed to overcome some apnea issues, as well as learn to suck (eat). I was by her side for almost every feeding, walking the 10 blocks to and from the hospital several times a day, even when I was still recovering from the c-section. Matt went back home to take care of our other children, when she was about 1 week old.
When she was about 3 weeks old, they decided she was almost ready to leave. They scheduled her MRI (part of the MOMS trial), and weaned her off the ng tube (feeding tube down her nose). We were all set for discharge on Thursday morning, when a urine culture came back showing she had a UTI. So, an iv was placed, and iv antibiotics given for a couple days, and she was discharged on that Saturday with oral antibiotic. She was 4 weeks 2 days old. We had to stay in San Francisco until the following week to have one more test, and urodynamics study to test the function of her bladder.
Ruth and I flew home that Wednesday, and Ruth met her sisters for the first time at 1 month old. She is a blessing in our lives, and we are so glad to have her home.