Happy birthday to our sweet Camille! Here is her unique and long birth story:
The Delivery
When I was 23 weeks along in my pregnancy with Camille, in mid-October, I started to notice symptoms of late pregnancy but this seemed illogical since I wasn't due until February. A few days later, I started feeling regular contractions. So while I picked up our youngest son from kindergarten, I called my doctor. He told me it would be very unusual for me to be actually in labor at 23 weeks with 8 previous full-term births. He thought it might be a bladder infection and told me to go to Insta-Care.
I took my youngest two home, got them some lunch, and then lay on the couch not knowing what to do. I didn't have a babysitter for them and I just wanted those contractions to go away which they definitely were not. Miraculously, David came home early from school. He didn't have a last period class and he had always stayed at school before, but today he decided to come home. So I left him in charge and drove myself to the doctor.
The doctor found that I had a urinary tract infection and said I was dilated 4cm. He called an ambulance and we ran every single stop light on State Street from 2000 N in Orem to the hospital in Provo.
I was immediately put on anti-seizure drugs to try to stop the labor which really put me out of it. Scott came from work to be with me and called someone to help him give me a blessing. Eventually I fell asleep. I woke up about 1am to the doctor telling me that the baby had to be born right away because the placenta was separating from the uterus. My bladder infection had gotten into the uterus and the placenta and my body was trying to get rid of it. I really couldn't understand why this was happening--it was like a bad dream. Camille was born a short time later and was immediately given to the NICU staff. My doctor was finishing things up with me and I told my husband to go be with our baby. But I really struggled emotionally not knowing how our baby was doing. I finally had a nurse go get Scott so he could update me and help me cope.
When he came back, he told me that the baby was not doing well and she was having a hard time breathing. We cried together, expecting her not to make it.
About an hour or two after delivery, I was able to go to the NICU to see Camille. It was hard to see this tiny little baby who wasn't ready to be born yet. The doctor said she had really struggled the first hour with her oxygen saturation in the 40% range for about an hour before they stabilized her breathing. He was a kind and optimistic doctor and helped me feel a little more hopeful.
On Saturday afternoon, about 12 hours after she was born, our bishop came to see us. He wanted to give her a blessing and we were happy for him to do that. The blessing he gave Camille was incredibly optimistic. I hardly dared believe that our baby might have a reasonably good outcome. Our bishop told me later that the words of the blessing came to him very freely and it was a really spiritual experience for him.
Early Days or the Rollercoaster of the NICU
Preemies have a variety of problems. One big challenge is getting them to breathe with immature lungs. In the 80's, big advances were made with helping preemies with their lungs using surfactant and very gentle ventilators. One neonatologist told me, "we can get rocks to breathe." But very early Sunday morning, Camille had a breathing crisis which I blogged about here.
Another challenge is brain bleeds. The first three days are really critical for brain bleeds because bad ones can cause catastrophic brain damage. Camille did have some brain bleeds but they were relatively mild and the doctors became much more optimistic about her chances.
Another common problem for preemies is the valve between the heart and lungs doesn't always close at birth like it's supposed to. So they were going to send her to a hospital in Ogden to have a surgeon close it. On November 1st, while they were prepping her to go, she suddenly started throwing up violently. They got an x-ray and found that she had a hole in her intestines and was very sick. So after stabilizing her as well as they could, they transferred her to Primary Children's in Salt Lake. She had 7 pumps going trying to keep her blood pressure up, keeping her breathing, etc. More than one staff member thought she wasn't going to make it. She was rapidly becoming toxic as her body tried to cope with the intestinal leakage going everywhere in her body. It was possibly the worst day of my life to that point.
When we arrived at Primary's, the surgeon told us Camille was very sick and might not make it. They said if her liver started bleeding that would be especially bad. They did the surgery in the NICU to avoid destabilizing her further and we were placed in a special room nearby to wait. After 20 minutes, the neonatologist came in and said her liver was bleeding but they were trying to stop it and were calling in a surgeon who specialized in that.
After what seemed like a long time, the doctor came back and said they had used some really expensive drug called "Factor X" to stop the bleeding and it had worked. Sometime in the evening, after the surgery was over and she was relatively stable, we decided to go home.
As a result of the intestinal perforation trauma, Camille's weight doubled overnight. Her tissues became overloaded with fluid--her cells were leaking fluid because of all the toxicity, called "third-spacing." The next day, when we called her nurse, she was not comforting at all and made it sound like Camille was going to explode. We called the doctor and he was much better at helping us process what was going on and made it clear she was not going to explode. But she was definitely one of the sickest babies in the Primary's NICU for a while.
The next several weeks were pretty challenging. Camille's body had to overcome all this extra fluid weight and it was very hard on her lungs. The doctors were really struggling to figure out how to help her breathe on the ventilator with the oxygen maxed out at 100%. They were running out of options. Finally an x-ray showed that the extra fluid was sitting in her chest cavity and needed to be drained so she could breathe more easily. She probably had over 100 x-rays in her first few months of life.
At the end of November, she was finally able to have the surgery to get the valve closed between her heart and lungs. Utah Valley doctors had warned us that the surgery might damage a vocal chord nerve if the surgeon accidentally hit it which would make swallowing and speaking more difficult. So we talked to the surgeon about it and thankfully, the doctor said he saw it very clearly and was able to avoid it. She recovered well from that surgery.
Finally Holding Camille
Shortly before Christmas, Camille was doing well enough so they transferred her back to Utah Valley Hospital so we could be closer to her. When she got there, the doctors successfully took her off the ventilator and put her on C-PAP which meant we could finally hold her after two months of life. On December 23rd, I finally got to hold her and it was a sweet moment.
Our next challenge was that Camille was diagnosed with retinopathy of prematurity. This meant that she had to have laser surgery to prevent her retina from detaching and making her blind. That surgery came in January and was pretty successfully although it destroyed some of her peripheral vision forever.
Another stress was that she wasn't regaining her kidney function. On that challenging November 1st, they couldn't keep her blood pressure up high enough to get blood to her kidneys so her kidneys got pretty badly injured and never recovered. She eventually went home from the hospital at about 25% kidney function which gradually got worse. Fortunately her kidneys lasted long enough for her to get a transplant when she was bigger without going on dialysis. A transplant could not have happened when she was in the NICU.
Trying to Gain Weight
A huge challenge for Camille in the NICU was gaining weight. The surgery on November 1 for her perforated intestine was an "ileostomy" which meant that most of her intestines were bypassed and all waste products went to a bag. It meant that most of her food was not getting absorbed and it made it very hard for her to grow. They had tried to give her a deep intravenous line, a "broviac" during her original surgery but it had failed because she was so sick and instead just gave her a big scar on her neck. It also meant that it was very difficult to feed her intravenously--regular IV's are very limited in what can be put in them. Regular IV's also fail frequently--Camille's were failing daily as her tiny veins collapsed. The NICU dietitians were besides themselves trying to figure out how to get her adequate nutrition, especially because the surgeon wanted to wait to feed her the breast milk I was pumping until her intestines were more healed. At the hospital, the surgeons call all the shots. At one point, Camille had an IV in her head because they couldn't figure out where else to put it.
Until we could get rid of that ileostomy (through another surgery), it would be hard for her to gain weight. But they liked babies to be a certain size before the surgery. It was a Catch-22. I spent a lot of time worrying and praying about that. In February, when the surgeon that had done Mindy's teratoma surgery came to Utah Valley to see the surgical cases, we talked to him about taking Camille's case. Technically the surgeon that did the original surgery was supposed to do the follow-up. He "owned" the patient and this prevented bad feelings among the surgeons. But Dr. Nichols who did her first surgery was leaving Primary Children's in a few months so Dr. Downey thought it would be okay for him to take over Camille's case. He also thought Camille was probably adequately healed from the first surgery that they could put her back together.
The journey was far from over but after 5 months in the NICU, it felt like a huge milestone.
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