Chapter 1: The pregnancy

For most babies their mother's womb is a place of serenity, a place to grow, develop and get ready for the world. The moment a baby is born premature their battle for survival begins. For Faith, her battle began shortly after conception.

Brian and I always wanted kids, in fact we wanted lots of them. We dreamt of having a large family, a house with a white picket fence- the whole nine yards. We found out we were pregnant in early September of 2007. Although we weren't planning on beginning a family so soon we were absolutely thrilled at the idea having a little one.

The excitement of being expecting parents soon turned into fear. A few days after we received the news I began bleeding. It wasn't just a little spotting- it was lots and lots of blood. We consulted books and doctors and the report was always the same..."this pregnancy is going to end up in a miscarriage..." We had more doctor appointments and ultrasounds in those first few weeks then most people have during their entire pregnancies. They wanted to rule out complications like ectopic pregnancies. On ultra sound it looked like I had a bicornuate shaped uterus. Our OB said that this could cause complications during delivery and the baby would likely be born a little early via c-section. At this point just making it to a delivery was game for us.

As the weeks went on so did the bleeding- but so did all of the normal pregnancy stuff. The nausea and fatigue were welcomed with open arms- this meant that my hormones were changing, this meant there was still a pregnancy.






There were several occasions when the bleeding turned into severe hemoraging. At the time I was completing my masters in education. At about 14 weeks as I sat in class I began to hemorrhage and was covered in blood. Some students in my class rushed me to the ER. The news was the same: You are going to miscarry. At this point they even said that my cervix was dilated a little bit. They wanted to do a D&C to terminate the pregnancy. Although the doctors said a miscarriage was inevitable through it all they always heard a heart beat and we always saw a moving baby. If there was no heart beat or no fetal movement we would have accepted the fact that we had miscarried. However we couldn't even fathom ending a life when there was a heartbeat.






They diagnosed the pregnancy placenta previa, a condition in which the placenta is lying low to the cervix- this condition can cause preterm labor (something that I never had....)




I was put on bed rest indefinitely. Work was very understanding, and the team of teachers I taught with stepped up and covered teaching my third grade class. Around 20 weeks I went in for a check up with a perinatologist (high risk pregnancy doc) after a screening for possible birth defects such as down syndrome turned out positive. I also had to consult a geneticists who recommended an amniocentesis to check for birth defects. Since this procedure came with risks to the fetus we opted not to go through with it. Even if our baby did have down syndrome or another condition it wouldn't have changed anything. I think this was God's way of preparing for having a baby with special needs.







Around this point we also found out we were having a girl. Almost everyone we knew thought it was going to be a boy b/c "he's such a fighter..." o contraire- Faith proved that girls are fighters!!!!! It was also around this time that we decided on the name Faith. We had some other girl names picked out however during one of our many er visits we discussed how she needed a name that meant something, something that could be a testimony to God's faithfulness and this incredible journey we were on. SO we decided on Faith. :)









Chapter 2: The delivery




I got the go ahead to return to work around 22 weeks. Around this time I started blowing up like a balloon. I had heard that becoming swollen is quite common during pregnancy but I was getting really big, really fast. I had to get my wedding ring cut off and I could only wear Crocs because my feet were so swollen. At about 23 weeks I checked myself into Good Samaritan Hospital, where we had planned to deliver.I just didn't feel right. While I was there they took my blood pressure, it was higher than normal (I had never had blood pressure problems in the past...) but they said this was all a part of normal pregnancy so they sent me home. That night I picked up "What to Expect When You Are Expecting" (aka the Bible for pregnant women....) I turned to the section I had become really well acquainted with "When something goes wrong..." and immediately diagnosed myself with preeclampsia. Everything they described, I felt. What was really scary is that I read that the only treatment or cure for this life threatening condition was delivery's. YIKES! About a week later I was teaching at school when I had the worse migraine I had ever had. I remember thinking to myself.."I can't go on long this....I feel like I am going to die..." That night we were supposed to go register for our baby shower. I got home and all I wanted to do was lie down. Brian, who was very worried called my mom (who is an RN) she ordered (yes, ordered) for us to go to the ER right away. I of course said No Way. We went through this a million times- go to the Er.....they say they can do nothing, send us home and we are stuck with another $300 co-pay. My mom sent over her nurse friend to take my blood pressure. I was extremely high. She advised us to go in right away. So back at Good Sam we were. They gave me meds for my headache, took some urine and sent us home. The next morning I still had my headache so I called my ob. When I arrived a nurse practitioner who had been following me took one look at me and said.."You don't even look like yourself (I was HUGE) you need to go to the hospital right away. SO back at Good Sam I was. This time they took more labs. Less than 12 hours later a team of doctors came into my room and said an ambulance was on it's way to take me to St. Joesph's hospital. I asked why and they replied.."Because we don't deliver babies under 30 weeks here..." WHAT???!!!! What do you mean...delivery?!"- that's not a word we wanted to hear for 16 more weeks! The labs showed high amounts of protein in my urine. It was preeclampsia indeed. They gave me the first round of steriod shots-to mature that babies lungs. They said they needed to get me through at least 24 hours- enough time to administer the two sets of steroids.









One of the docs (whom I recognized as the doc who sent me home a week earlier) said that he sees a condition this severe about once a year. And when he does see it this early it means that it is really bad. YOUR health is at risk he said. At this point I didn't care about MY risk. I cared about Faith. So off to St. Joe's I went. Poor Brian. He got a call at work saying his wife was going to be whisked away to deliver.









At St. Joe's they ordered me to strict bed rest.."until the baby comes..." our goal was 28 weeks- 30 would be better but 28 seemed more feasible. Every night they weighed me. I put on an average of 8 pounds a day. This had nothing to do with what I ate but the disease itself.







Just when we were adjusting to living life in the hospital (something we later learned to do a lot of!) they came in on February 3rd and said that was going to be the day. NOOOO! We argued, we pleaded. They were not going to take our baby. Not now- not this soon. Let's at least get to 26 weeks. This became the new goal.

That night I was afraid to sleep. I kept telling Brian that I couldn't breathe- I was afraid to fall asleep because I thought I wouldn't wake up. The following morning a team of doctors rushed into our room. Today was the day- there would be no choice. my lungs had filled with fluid and my kidneys were failing. They told me I would die if they did not take the baby. It was February 4th- Super Bowl Sunday. We were going to have a party at the hospital- my mom brought the chips and the dip- we were supposed to watch a football game not give birth to a baby almost 4 months early. They told me to take a shower- it would be the last one for a long time. I remember crying the entire time. They told me I needed to stop crying because it kept elevating my blood pressure.

Before taking us in to deliver the took us on a tour of the NICU. I balled the whole time. They showed me a baby who was about a month old who was born at a similar gestation as Faith. Little did I know that three months later I would watch this baby die as his mom held him in her arms.

Delivery rooms are supposed to be filled with anticipation and joy. We never had the time to go through Lamaze, we didn't tour hospitals, we didn't have a birthing plan, we didn't even have a middle name picked out. I'll never forget the somber mood in the delivery prep room. I couldn't stop crying- my mom standing there-who once was a labor and delivery nurser herself- not knowing what to do. Brian was scared- for me and the baby. The next 48 hours were a blur...the epidural...the c-section... when Faith came out she did let out a faint cry- that was really reassuring. I'll never forget the words of the delivery doc when she pulled Faith out..."Oh my gosh...it's so tiny..." right away Faith was rushed off to the NICU. I never got to see her. It would be more than 24 hours later that I ever got to lie eyes on my first born child.

"Go!" I told Brian..."go with her!!!" he was escorted to the NICU where he watched out little girl become intubated. 636 grams...not even a kilo. That's one pound 6 ounces. For a 25 weeker that was small- more like a 23 weeker- no doubt she had stopped growing in the womb.

They took me into recovery where they administered magnesium sulfate. They told me I would need to be on it for 24 hours. That meant no seeing Faith. When I was pregnant I had a reoccurring dream that I had a c-section and was so out of it everyone got to hold our baby before I did. Whenever I had this dream I was really bothered by it. Well- no one got to hold Faith but there were many friends and family who laid eyes on her before I ever did. This did not bother me the way it did in my dream. I wanted people to see her. Whenever someone would come back from seeing her I would ask a lot of questions. I felt connected to her. Brian brought me a diaper the size she was wearing. It was the size of a credit card. I clutched onto that diaper for the next 24 hours.

Meanwhile the neonatal team was working hard to save our baby's life. She was on an oscilating ventilator- the maximum support possible for an infant this size.

Brian took turns being by my bedside and hers- each time he came to mine I told him to go to hers. I didn't want to leave her alone.

About 36 hours after delivery I was wheeled into the NICU. It's not out of the ordinary for a mom to cry the first time she lays eyes on her baby. My tears were much different. My tears were of guilt, pain, and fear. I had heard about tiny babies, but nothing could have prepared me for the size of Faith. Pictures do not do it justice....a 1 pound baby is incredibly small. She looked like a vibrating rat- her body still covered with lanugo (hair covering...) she didn't look like a baby- she looked like a fetus. You could see through her skin. Her body was covered in tagaderm to ensure the skin would stay intact. We couldn't touch her- nor did we want to. Everything was so scary.

In Faith's first few days a life many things went on- there were many tests, transfusions, medications...I can't even begin to tell you everything that went on. We were thrown into a world filled with machines and medical staff- little did we know this would be our world for a very long time.

When Faith was three days old, and 1 pound 3 ounces it was discovered that she had a valve in her heart that didn't close after birth. She would need heart surgery. I'll never forget when the docs from Children's came over and gave us the run down. Yes this was typical in preemies but when you perform heart surgery on a baby this small it's like tying wet toilet paper. Waiting for Faith's Patent Ductuc Arteriosus ligation surgery was like waiting for an eternity. It also was our first initiation into surgery waiting rooms- something we'd become all too familiar with in the coming months.

The first few months of Faith's life were very turbulant. She had many blood transfusions, steroid doses and medications to keep her tiny body pumping. It took about 6 weeks for her to gain her first pound. Many times they tried to extubate her and take her off of the ventilator. One of the neonatologist told us that how long a baby is on the ventilator often dictates their health down the road. Faith would make it onto nasal CPAP for a very short period of time but would eventually tire out. This would result in her stats falling and often her needing to be resuscitated. During one resuscitation attempt a few of her ribs were broken.

Sepsis was Faith's worse enemy. She seemed to always be coming down with something. She battled many forms of pneumonia, which made it difficult for her lungs to heal. She also contracted MRSA, a drug resistant staph infection.

As chronicalled in the blog Faith's battle was to get off of the ventilator. She would make it onto CPAP for a few days (or sometimes hours) then totally bottom out, which was always very scary. The on and off intubation were damaging her airway (and lungs!)

In April Faith had made it off of CPAP and was on a high flow nasal cannula (oxygen). Although she still had a pretty significant stridor she was off of the vent and that's all we cared about. During a routine eye exam it was discovered that Faith had a very sever form of retinopathy of prematurity with plus disease. Her disease was advanced to stage 3 and would need immediate surgery. Faith was placed back on the ventilator for the eye surgery and struggled to come off of it again. She made it to CPAP, but once again it was discovered that she would need another eye surgery to repair the amnormal growth of blood vessels. We were told that she was pretty much blind. At this point Faith never made eye contact, track objects, or even look at things.

The next few months were difficult for Faith. She struggled to take bottles, constantly gasping for air. She continued to fail extubations and needed constant resuscitation. It was late June when the neonatoligst team approached us about Faith receiving a trachostomy and gastronomy tube. We were terrified of this, but knew it was out only hope.

On July 7th, 2007 Faith underwent the tracheostomy surgery, had a permanent feeding tube placed in her stomach (a gastronmy tube) and had her stomach tied off with a nissen to prevent reflux. She made it off the vent quickly, and we knew that as soon as we were trained and ready we could take her home. We spent the next three weeks learning everything there was to know about trachs. Although Faith was a lot better than before the trach she still seemed to retract when she breathed and the stridor was still present. Nevertheless on August 1, 2007 after 6 months in the NICU we took our baby home.

levels were below 80. We took her to the Children's Hospital Home was very scary. Not just because we were first time parents with a new baby but because Faith just didn't seem right. She had a dusky tone to her skin and her bobbd her head with every breath. We thought there was a problem with her trach- so we did several trach changes. The night we took her home we took her to the emergency room via ambulance after her oxygen saturation levels plummeted. Once we were there Faith perked up (murphy's law) and we were sent home. We still felt very uncomfortable with this. The following morning we called one of Faith's homecare nurses. She heard Faith's stridor over the phone and told us to go back to the emrgecny room. So back to Children's we went. We spent hours in the ER. We begged for x-rays and blood cultures. We became very frustrated when a resident tried to send us home. We asked to speak with an attending who looked at Faith and suggested we do x-rays. The x-ray showed some pneumonia, they wanted to give us antibiotics and send us on our way. Once again we asked to speak to someone else. During this time a flight for life respiratory therapist walked by and saw us. he was very alarmed when he saw how Faith has breathing. He told us she should have been in a trauma room and she needed a ventilator asap. The thing we had dreaded on the NICU was now our best friend: the vent. So Faith was wisked away to the PICU where she was placed on heavy ventilator support. In the PICU they bronched her and discovered the root of all her problems: bronchial malacia. Her bronchial tubes were weak and floppy (hence the constant stridor) they would need mechanical ventilation until they were strong enough work on their own. When we learned that the typical growth timeline was two years we were floored. We had never hear of being on a vent as a rehabilitation tool. Little did we know that the vent was one of the best things to ever happen to Faith.

Along with the vent came the need for increased nursing. They told us that the average baby wait up to a year to get enough nursing coverage to go home. We were also shocked by this, and determined not to be one of those families. We learned the ins and outs of the vent as quickly as we could. We also posted several adds for nurses. On September 11th, 2007 we got our second chance at taking Faith home.

When we got home the ewuipment was the the same as it was in the hospital. A team from our medical supply company set everything up. A few hours after being home our nurse noticed that the heater was no working correctly. We called the company who told us to put the heater on a certain setting (non-invasive..) we had no idea what this meant so we just did as they say. We also noticed that circuitry on the vent did not look very secure. Apria said there were some missing parts, but it would be ok for now. We were so excited to have Faith home we weren't too concerned. We also didn't know the vent like we know it now. While at the Children's hospital we put a lot of pressure on the staff to get us home, in retrospect we wish we were more trained (which was our fault).

That night we had a night nurse. While she was new to the company she said she had trach/vent experience. When we first met her I had some reservations- something about her didn't sit right with me. Nevertheless we just wanted home so we took her. We were so exhausted- after we spent a few hours with her we kissed goodnight to Faith and went to bed.

A few hours later we were awoken to screaming. The nurse ran into our room screaming that Faith was dead. We had run through these type of scenarios before, what to do in an emergency- but nothing could have prepared us for this. The ventilator was low pressurng- there was a disconnect somewhere- but we didn't have time to find it. We ran down the strairs and saw our baby laying there lifeness and blue. We have seen Faith crash before- we have seen her heart rate and oxygen saturation levels in single digits. But we had never seen this before; Faith really looked dead. BAG HER!!!! GET THE BAG!!!! Brian scrambled for th resusication bag- I ran to the phone. Everyone was screaming. The bag wasn't working- it was a self inflating one however it seemed to be malfunction. Then we remembered the hospital grade bag that one of the RT's "stole" from the hospital (later he told us that something told him to give it to us- they aren't supposed to give away those bags- they are hospital property.) It took Brian about 5 minutes to get Faith back. I was crying to the 911 operator. For those of you who have called 911 in an emergency you know how minutes seem like hours.... I screamed at the telephone operator- Why aren't they here!!!? Meanwhile Brian was working on Faith, with the nurse the nurse by his side. Later he told me that Faith wasn't coming back...but when he started talking to her she did. By the time the paramedics got there Faith was back to her normal saturations. We also found how the disconnect happened- a little piece of wire on the heater came loose. We later found out that Apria had used the wrong circuit for the vent- one of the reasons why the disconnect happened. Disconnects happen ALL the time on vents- but how someone responds to them is key. The LPN had not been properly trained. After the episode she told me she was supposed to go to an orientation, and she felt she was not trained enough to know how to deal with situations like this. Information that would have been nice to know 12 hours ago. :)

We did not end up going in that night...Faith became stable. We felt it was ok. The following day Faith seemed to be having difficulty breathing. She was on a lot of ventilator support (receiving 22 breathes per minute) but still seemed to struggle. We called the rehab RT at the hospital who said he would come over to look at her. We also called the equipment company to tell them what happened. When Apria arrived they also informed us that all along Faith had been on the wrong heater setting. What they had previously told us was incorrect, patients with trachs needed to be on "invasive mode." Hmm...once again we were misinformed. That night Faith had a few more episodes. Her saturation levels plummeted. We had a different night nurse who knew exactly what to do; she bagged her and Faith came up. We took her int the hospital where we were once again readmitted to the PICU. There they did a bronch. Faith had a mucus plug in her lungs. This no doubt was due to the insufficient humidity she was receiving from the heater being improperly set up. It was certain; we were cursed!

At this point home was the last place we wanted to be. Spending the next year in the hospital sounded wonderful to us. We were scared from taking home twice, and having her end up in the hospital less than 24 hours later. We also had a hard time trusting- the equipment company, our nurses, even ourselves.

So we settled into living at the hospital again. School was starting up again and we had to return to teaching. I worked half time and spent the afternoons at the hospital with Faith.

The days turned into months and before we knew it were spending Thanksgiving, Christmas, and even Faith's first birthday at Children's. Looking back i don't know how we did it, but at the time it was our only option.

As spring rolled around we started to think about taking Faith home. It was a slow process- we had many reservations. We were scared, but we also knew that a hospital was not a place to raise a child. We also knew the ventilator a lot better then. We had grown very confident in her cares, and knew deep down that we could handle whatever came our way. So on April 9th, 2008 we took Faith home the the third and final time. :)

And that's where she has stayed. Since coming home Faith has blossomed. She has truly taken off developmentally. She is much more interactive, and overall happier since coming home.

When Faith has first born if we would have known that we were going to spend 14 months in the hospital I don't know if we would have been able to do it. Looking back only by the grace of God were we able to get through it. His hand was in everything. We really believe that we were meant walk this difficult road. We have had the privilege of meeting extraordinary nurse whom we now call friends, terrific doctors (and *ahem* so not so terrific ones we have learned from!)wonderful social workers, therapists, and families that have inspired us along the way. I can't imagine not knowing the people from St. Joe's or Children's. I also can't imagine not knowing some of you- who have followed Faith's story from day one and who have been with us through the ups and downs. 18 months ago I didn't even know what a blog was. Now it has become a journal, a scrapbook, and a lifeline.

We thank you for sticking with us through rain or shine, and for carrying this burden with us. It truly takes a village to raise a child and we are fortunate that the community built on this blog has been there to raise ours. :)

Updating- come back soon!