Faith's Story and Update

Hi Everyone,

I finally have a chance to step away from the family and type up a bit of an email here. This is quite a long email, so if you are not interested, that is just fine too…we just wanted to let everyone know what happened and where we are headed from here…

Faith Emily Patton was born on November 2, 2007, at 5:49pm, she weighed 10lbs 4oz. It wasn’t a very long delivery…but since she was 1.5 weeks late, we decided to start inducing so had changed our plans from a home birth to a hospital birth. The inducing started at 9pm and by 1am I was really feeling the contractions, so we headed off to the hospital and met the midwife there.

We got into our room and started to prepare for the birth, I had dilated fairly quickly, and with not much pain, and by 6am I was at 8cm. Then I stopped dilating altogether. We tried all sorts of ways to get it going again, but it was not going to happen. The midwife had noted that Faith was facing upward and was on a bit of an angle. We tried many ways to get her to turn, but being a Patton, would have to have the last say in the matter…

We ended up transferring care around 1:45pm, since nothing was working and that is when I received some oxytocin, to help the labour along. That proved to be extremely painful, so I asked (begged) for an epidural, after about an hour or so. The epidural was started and after about another hour…of no progress, they had to up the epidural dose. The pain was just so extreme. At one point I was crying and asking them to just cut her out!!

My water had broke earlier and it was running clear, which meant that things were fine with the baby, so we didn’t foresee any problems to come. Then, while I was on a fetal monitor, they were seeing the heartrate dropping at various intervals. Nothing that was too bad and I was just turning from side to side…when I did that the heartrate picked up again.

I had fallen asleep during all this and the nurses saw that my body was starting to push, so they thought that I was ready…when they went to check how dilated I was, that was the first time that they had seen the meconium (poop). They called the doctor right away and also the pediatrician, since this showed that the baby was in distress. I was at 9cm and instead of waiting any longer, they decided that Faith needed to come out immediately.

So, they turned her with forceps and got her out with my pushing and their pulling…apparently, she had been pushing so hard on my cervix that I was swollen and there was no way that she would have come out any other way.

She was immediately taken to the warming table where we heard one cry and she was then immediately intubated (put on a ventilator) this was so that she would not inhale anymore meconium. They worked on her in the room then took her straight to the NICU to be worked on more.

The doctor and nurses kept coming into our room frequently to tell us how she was doing. Her apgars read 2, 7, and 10. We though things were going well until the pediatrician came in and said that she was having a lot of seizure activity and he was going to have her transported to the Children’s Hospital, in another city.

3 hours later I was finally able to go and see her. She was in a giraffe (that is what it is called…it is an incubator that opens up). She was just laying still. The nurses around her kept referring to her as baby Patton…which is what they do. I spoke up and without consulting Pete, told the nurses that her name was Faith. It was originally going to be Emily Faith, but Faith just seemed fitting at that moment.

When I was in there looking at her, I could feel such a peace about her…it was like she was being held in God’s hands and I just knew that she would be fine.

The transport team came in and started a procedure they do called cooling. Faith’s body temperature was brought down to a cooler state and she would stay like that for 72 hours. This was so there would be less brain damage if she continued having seizures. Quite fascinating.

We were not told everything about the birth, but apparently there was a knot in her cord and it was wrapped around her neck as well. We could have lost her.

By 7am I told the hospital I wanted to be discharged to go to Hamilton. So, up we got and we headed home to get an overnight bag. We had no idea how long we would be, so we packed a bit of stuff. We stopped at my parents to show the kids some pictures and talk to them about what was happening and where we were going and to keep praying for Faith.

We got to the hospital and were told to wait in the little room that we would get to know too well. They were still working on her, it was something else to see all the people around her helping to keep her alive. We were finally able to go and see her. She was in a closed incubator and was just laying still. She had been sedated and was then receiving many different medications, for seizures, infection, blood pressure, her heart, her kidneys and her lungs.

We sat by her bed all day and most of the night that first day. We had a bunkroom in the NICU ward at Mac but we could barely sleep. On Sunday we had a meeting with a social worker. She told us that Faith was very, very sick and did our other kids know about what was going on. She was preparing us to accept the fact that either Faith will die, within a day or so, or we will have to make some decisions in the next few days.

I lost it. I didn’t want to hear that Faith was going to die and I didn’t want to believe it either. The social worker also got us into a house for families with children in the hospital, which was absolutely awesome!! We headed over there on Sunday and got settled in and stayed for the following 2 weeks.

Faith had been scheduled for an MRI and an EEG, she had had a brain ultrasound the day before that was normal. After these tests, we met with the doctor and the nurse and they told us, again, that Faith was very, very sick and that as per the results we could look at potential outcomes of cerebral palsy, mental retardation, blindness, deafness, and seizures. They also continued telling us that they didn’t think she would survive too long and they didn’t expect her to live as long as she had already. They then said that we needed to go home and talk about these potential outcomes and be ready to make some hard decisions on Tuesday.

Tuesday was the worst day of the whole ordeal, that is when the meetings started…like crazy!! First we met the second doctor, he was just giving a second opinion on Faiths condition. The next meeting was with the kidney specialist. He talked a bit about her kidney failure and explained to us what dialysis was and what was involved with the procedure. Then he went on to talk about different children that he has worked with. He told us things like the child had a poor quality of life and it broke his heart to continue treatment with her. Then he told us about another case where the baby wasn’t supposed to survive at all and went home to live a great life after the hospital. He would schedule a kidney ultrasound for Faith to see where the problem may lie.

The next meeting was with the ethics committee representative…she seemed really nice going into the meeting and basically told us what options we were going to be able to choose from. One was to do everything possible to keep Faith alive, one was to take everything out and let her go on her own in a nice room at the hospital, we could spend as much time as we wanted there, and the other choice was to take her home, with a little help and let her decide when she was ready to go. She prepared us for the meeting with the doctor where we would have to make our decision.

After meeting with her we met with the neurologist. He showed us Faith’s MRI, which to this day we think was quite remarkable. You can see her eye sockets, her teeth buds, her ears…technology has come so far!! He went on to tell us that at some point, before the birth, during the birth or after the birth…those 7 days, she was deprived of oxygen. He showed us the areas of her brain that had potential damage. The front area controls your motor skills, the back of the brain controls your vision. We were also told that they could not determine how much damage had been done, but we were looking at the same potential outcomes as the doctor had told us earlier, along with speech and social dysfunctions and learning difficulties.

Then we came back from lunch for the BIG meeting. In that nice little room, at the end of the NICU, is where we sat on the nice comfy couch and the doctor, the nurse, the head nurse, the social worker, and the ethics lady all sat around us in a semi-circle. The meeting started with the very familiar question, that we would continue to be asked up until today even. What do you know and understand about the situation…so, I answered by repeating everything we had been told that day. There was a lot of awkward silence, where I think they wanted us to talk about how we felt…but I didn’t feel it was necessary…and until they asked us, we weren’t saying anything.

The doctor would tell us what he felt the problems were and he told us that we had this window of opportunity, where we could make a compassionate decision and let Faith “declare for herself that she has suffered enough”. We adamantly stood by what we believed and we told them that she was being prayed for worldwide and we wanted everything medically possible done for her. They wanted to take her off the ventilator and that is why our decision, at that moment was so important. If we decided to let her declare then they would not re-intubate, if we said yes, keep her alive, they would have to put her back on the ventilator.

The next day was another big day, Faith was taken off the ventilator. She did well, the nurses had taken 2 pictures of her without any tubes in her face for us. It was nice to see her like that. Then she needed some low flow oxygen help, then ended up needing CPAP (continuous positive air pressure) to help keep her lungs open, since they were so wet from her kidneys not functioning properly. The next day, since she had gone over 24 hours without a ventilator, they had an occupational therapist come in to do some work with Faith to get the fluids moving in her body.

We came back from lunch to be told that they had to re-intubate her (put her back on the ventilator) because her right upper lung had collapsed. She started to pee a bit more this day, which was an encouragement. On Friday she had still been stable, her peeing was improving, but the ventilator was still doing almost all of the work for her. We had another meeting with the doctor, social worker, ethics lady, and our nurse for the day. This was another really bad meeting. The doctor started by telling us that it was a good thing that Faith was peeing, but her kidneys were still not functioning properly, then they went on to tell us that they were concerned because she had not yet opened her eyes…we told him that we had seen eye movement while sitting with her. He next said that they were concerned with her lack of movement. We asked if that could “possibly” be because of the swelling? He also said that it was not a good thing that she had to be put back on the ventilator, I asked about the fact that her lungs were wet and maybe it was too early to take her off in the first place. He stood by the belief that her “brain injury” caused her to go downhill and therefore she needed the intervention.

Then the ethics lady spoke up and asked me where I see Faith in the next 2 years…I responded that I was not a fortune teller and only time would tell. She went on to tell us the potential outcomes for Faiths life and we needed to think about the future. I told her the keyword of this whole discussion was “potential”, and who are we to decide what could “potentially” happen… Then it was the doctors turn again, he told us about a conference where parents who were told these things at birth, and made the decision to keep their babies alive, regretted that decision now, years later. Then it was the ethics lady’s turn again. She told us that her team (the ethics team) were having trouble regarding our decision to keep Faith alive, and that we were prolonging her suffering. This went back and forth 4 times each…it was like they were tag teaming. Finally Pete spoke up and yelled at the lady and the doctor. He said that we were not giving up on Faith and that was final. She was still fighting…she had a heartbeat, and we were going to do anything possible for her to stay alive. We were told that she could need a tracheostomy, dialysis, feeding tube, and other things to be able to bring her home, but we told them we were standing firm on this decision and everything that happened would be between God and Faith. The social worker showed us the notes from the meeting and she put in there that we were firm in our decision and nothing was going to change our minds. We left that meeting feeling like we had been pressured to make their decision…

Then, it happened, the window of opportunity closed for Faith. We were no longer bothered by the doctors and ethics people. Life was good again!! The weekend doctor chose to put Faith on a kidney medication, stronger then before, and that resulted in her kidneys starting to function again. On Monday the 12th Faith opened her eyes for the first time. She was taken off the medication and her kidneys were still functioning. On Thursday the 15th, she “helped” to remove the ventilator by coughing it up. She turned blue in Pete’s lap, but then started to breathe on her own. The doctors and nurses were shocked and happy!! So were we.

On November 27th, she had a feeding tube put into her stomach. This is because she was showing a lack of ability to be fed orally. She was not interested in sucking too much and the nurses and doctors were concerned about her swallowing ability. They didn’t want her to inhale her milk and end up back at the beginning again.

She has continued to improve and after 1 month at the childrens hospital, she was transferred to the NICU at our local hospital. She continued to do well, but her test results were a bit to be concerned about. Her calcium levels had gone up quite a bit and they were medicating her to help bring them down, then they were too low…but that could take weeks to regulate. After about 3 weeks in KW she finally came home…just in time for Christmas. It was such a nice Christmas for our family.

Now that we are home, we have nursing care 2 times a week, the dietician has been out once so far, we will be having a occupational therapist, a physiotherapist, and a speech and language therapist. The OT and SLT will be working with Faith to start taking a bottle so the tube can be taken out sooner then later. I was reading through her medical history now that we are home and cannot believe everything that she has been through. We were never told the whole story of what was going on…

I don’t necessarily know what all these things are, but she had hypotension, liver failure, lactic acidosis, acute renal failure, anuria, and hematuria, hypocarbia and irregular breathing, seizures. It is also noted that she was treated for swelling of the brain, sepsis, thrombocytopenia (low platelets), multi-organ failure and probably many more things that I don’t know about. She received plasma and a platelet transfusion in the hospital along with many medications and treatments. It is also stated in her medical file that “certainly Faith is quite a miracle” and that is what we choose to believe.

We know this is not over. We continue to be outpatients at the hospital and will be making regular trips to the childrens hospital for follow-ups. We continue to believe in full healing for Faith and we continue to love on her, like any other baby would be loved on too. We are enjoying every gaze that comes from her eyes as she watches what is going on around her, the smiles that she smiles when she sees a face she likes, the noises that show she is trying to talk…cooing and gahing, the sounds that are the beginning of a laugh. We are treasuring each moment we have with her and we want to thank everyone for what they have done for our family, whether in person, or through prayer. We would never have gotten this far without everyone of you!

Ruth and Peter Patton
and family