Wednesday, January 13, 2010

Faith's story

The Story of Faith Grace Miles
My baby would have been 22 months old soon. That is hard to believe. I thought that it was about time to write her story, her journey, her rollercoaster ride. What ever you choose to call it, it has changed our lives forever.I graduated from college in April 2007. That May at my brother's wedding we decided to leave it up to God, if we were to have a child. No baby. Again in June at my cousins wedding we left things up to God. The beginning of July I had a feeling...maybe, just maybe I thought I might be pregnant. I took a test and couldn't believe my eyes! It was positive. They really don't lie to you when they say that it only takes one time! I took several more tests and realized it was time to tell Steve. I bought a Willow Tree figure of a father holding a baby and wrapped up the test. Steve opened it and was very confuesed! "But it was only one time." Were the exact words that came out of his mouth I believe. We were both scared and excited.We started looking for a house and I started looking for a teaching job. Our life was starting to fall into place. Soon we bought a house, I found a job, and we moved in. Life was good. I felt good and had no morning sickness. We chose to go to a family practice for our OB care. We heard the baby's heartbeat in the 150's and things were measuring well.Our ultrasound was scheduled for 21 weeks and it was in October. Steve and I went in for our ultrasound early on a Monday morning. We were so excited to see the baby on the screen, it was real. We were really having a baby. I asked the tech a question about the dark circle on the screen and she told me it was the baby's stomach. She said that she may have to take measurements several times to make the radiologist happy. But not to be concerned. She then asked us if we wanted to know what we were having. "Yes, please!" I had a feeling it was a boy...but boy was I wrong. It's a girl! I was soooo scared to be having a little girl. Little did I know that a day later it would be the least of my worries.We left the office with pictures. Steve and I were excited and scared to really see that baby growing in me! Monday we shared our news. Tuesday our world fell apart. The doctor left a message on my phone saying that she wanted to go over the ultrasound with us. I thought maybe this was normal so I returned the call while on my hour long commute home. All I heard was "diaphragmatic hernia" "stomach near heart" "it can be fixed" "don't look it up on the internet". What was happening? People have babies and they are born healthy, why was this happening? Someone pinch me please. Steve was in conferences at school when I called him. He was just as shocked as I was. He left conferences to come home and so that we could be together. I called my sister and told her that the baby had a defect and I lost it. She tried to calm me, but I just was in so much shock. We stayed away from the internet for awhile and called most of our doctor friends. They read what it said in their medical books. This was not sounding like an easy "fix" as had been first suggested. We started research and our heart sank again. 50% survival rate, intubation at birth, and the list goes on.We were referred to the maternal fetal medicine (MFM) doctors in town. Ultrasound confirmed CDH with stomach and intestines in the chest. We were pretty unhappy with our consult and since they only see three to four cases a year we sought a second opinion. We were referred to the University of Michigan.A week later we were at U of M getting an ultrasound and meeting with the perinatologist and pediatric surgeon. After a long ultrasound, stomach, intestines and liver were found in her chest. Her LHR (lung to head ratio) put her in the moderate to severe category. Though this was hard to hear every person we encountered gave us hope. We met with the ped. surgeon and he answered all of our questions.From then on we would travel to Ann Arbor every month for an ultrasound to check fetal growth. After our first appointment at U of M, Steve and I decided upon the name Faith, because we knew that our faith in God would get us through this "bump".We went back in December for a fetal MRI to see the capacity of her lungs and get a clearer picture of what was in Faith's chest. We prayed for the liver to have migrated back down, prayed that things would have changed for the better. Unfortunately this was not the appointment. After a day of tests we were getting ready to meet with the perinatologist and the ped. surgeon came in. The whole family was in tow and we knew that the ped. surgeon meeting with us was not a good sign. The MRI showed very little lung volume, placing Faith in the severe category, increasing her likelihood of needing ECMO and making her a candidate for the perflubron clinical trial. The doctor explained everything very well and still had hope for Faith. We were matched with a family of a child with a similar diagnosis that survived.We met the Baker's in January of 2008 when we were getting a tour of the NICU and our ultrasound for the month. Poor Noah had reherniated. It was great to finally meet them and have them answer more of our questions. Most of them were about Noah's feeding tube and life in the NICU. We continued to email and talk on the phone after our first meeting.In late February of 2008 I moved to the Ronald McDonald House of Ann Arbor 2 weeks before Faith was due. Every day we walked and tried to get her to come out! It didn't work and we were induced on March 5th, 2008 after about 18 hours of labor and 2 1/2 hours of pushing my beautiful baby girl was born on March 6, 2008. Steve cut her cord and she was wisked away. They worked to stabilize her and get her intubated. Awhile later Steve and Jennifer (my sister) were able to go and see her in the NICU. Late that evening I was finally able to go and see her. I couldn't believe that I was going to see my baby. Which one was she? That was the hardest feeling. To not know what baby in the NICU was yours. Steve wheeled me back to her where she was getting an echocardiogram done. So beautiful and so perfect. She didn't look sick, but I knew that she couldn't breathe on her own.She survived the honeymoon period and then needed ECMO. Again I thought that we were prepared for this after all the research and information we were armed with. ECMO was one of the scariest moments of my life. Faith wasn't even 48 hours old and without ECMO she wasn't going to make it. We consented to ECMO and enrolled her in the perflubron clinical trial. This is where they place perflubron in the lungs while intubated to help encourage growth and expansion of the lungs. It stayed in place for 14 days. Her chest x-rays showed a change in size of the lung and we were all so excited. Faith was not tolerating the reduced ECMO flow and had to have her circuit changed several times and the decision was made to do surgery on ECMO. So we signed consent and followed her down to the OR with all the nurses, ECMO techs, respiratory therapists and doctors. It was quite a production to move that machine with the baby.Her surgery took 3-4 hours and she was back in the NICU. The defect was pretty large and they had to use gortex to repair it. Her stomach, intestines, spleen and part of her liver were in her chest. They were unable to fit everything in her abdomen and used a silo to hold some organs while the swelling went down.She came off of ECMO after the surgery. Did well the 24 hours after the machine was removed. After they decannulated her she started to have some other issues. She was requiring 100% O2 and Nitric Oxide to fight her pulmonary hypertension. We were getting ready to go out to eat when they told us that she had a blood clot in her heart. I wasn't sure how "bad" of a thing this was, but I prepared myself for the worst. The doctors responded to this with Flolan and Heparin to decrease the clot and help the hypertension. By Friday we stayed with her late and read Dr. Seuss to her as we did each day. We headed back to the Ronald McDonald House for the night and settled in. Around 1:50 am Steve's cell phone rang,"She got the call todayOne out of the grayAnd when the smoke clearedIt took her breath awayShe said she didn't believeIt could happen to meI guess we're all one phone call from our kneesWe're gonna get there soon "It was the dreaded call. "Steve, Faith's not doing well you need to get here as soon as you can." Our baby had gone into cardiac arrest. CPR for 30 minutes, pumped her full of meds, put her on the oscillating ventilator and she was barely hanging on. We had her baptised and chose to put her back on the conventional ventilator so that we could hold her for the first and last time. I held my baby as she grew her wings. Her time on earth was through, her purpose for this planet was filled. It was time for her to be healthy and whole in heaven. Free of pain, medicine, surgery, but surrounded by our love forever.I had thought about this moment while I was pregnant with Faith, but I so hoped that she would be a survivor. She was a survivor for 30 days. And she will survive a lifetime in our hearts and memories.

2 comments:

Missing Kasey said...

Fly sweet Faith breath easy. ((hugs)) You are doing wonderful things in memory of her, she is very proud of her mommy and daddy!

Nicolle

Dotty said...

what an absolute blessing Faith is. though she is no longer here with you, she lives on. she is imprinted on many hearts, mine included. sending you many hugs!!