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.

Thursday, January 7, 2010

Missing you

Oh sweet Faith...

I miss you terribly. I was reading and looking back through baby Averi's parents posts and I tell you that you and Miss Averi are both trouble makers :) Her mommy said that she moved even though she was maxed out on meds...JUST LIKE YOU DID! Averi's dark hair and her eyes remind me of you. You and Averi have touched the lives of so many...

It's hard to believe that you were 22 months old yesterday. Your birthday is in 2 months! A 2 year old. I have a crazy 2 year old prancing around in Heaven. Mommy and Daddy love you baby. You are a great big sister. Abby loves to look at the pictures of you.

I forgot to tell you that I am going to meet Drake's mommy. We are so excited. We have shared so much joy and pain in the last two years. God placed our families in each others lives for a reason. I don't know what I would have done with out them.

I am working with 8th graders for confirmation at our church and have been asked to teach on a servant's heart. Faith without you and this trial in our lives I don't know that my servant's heart would have grown as much as it has. Thank you for all you do and continue to do in our lives.

Love you babe...
Breathe easy...
Butterfly kisses...

Tuesday, November 3, 2009

The Story of Faith Grace Miles

My baby would have been 20 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 today
One out of the gray
And when the smoke cleared
It took her breath away
She said she didn't believe
It could happen to me
I guess we're all one phone call from our knees
We'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.

Wednesday, March 4, 2009

Here is a video we made for Faith's birthday. It is on Friday. We will be heading to the NICU to donate over 200 books for her First Birthday in Heaven!

Saturday, December 27, 2008

New news!

We hope that you all had a blessed holiday! Steve and I have been enjoying our time in Florida with family. We have been to Sea World, Downtown Disney, and shopping of course.

We would be going many other places...but we are expecting! So I can't go on any rides! I am also on pelvic rest due to a sub chorionic hemorrhage. They say they are fairly common, but it puts us at risk for a miscarraige so we have been extra careful! We are due July 4th, 2009!

We share a close bond with another CDH family in LA. We were due a day apart with our CDH babies, but hers came early. After Faith fought for 4 weeks and Drake fought for 7 weeks...they went to Heaven a day apart. We have stayed in contact with them through our journey of grief. We were so happy when they told us they were expecting July 7th! The next day we tested and it was positive. Once again we are pregnant together! God and our children have blessed us and hand picked these little ones. We plan on meeting after the babes are born.

We have another appointment on January 5th, 2009. We are hoping they will do an ultrasound to check the size of the bleed and that we may get a sneak peak at the gender. We are willing to share the gender but not the names! :)

We hope that this post finds you all well. Have a happy new year!

Love,
Amy, Steve, ^^Faith^^, and baby Miles

Sunday, October 5, 2008

6 months without you...

It is so hard to believe that it has now been 6 months without you my precious child. The love and beauty you brought to this world were indescribable. I will never forget your Daddy's face when he saw you each day. You life and fight changed him as a man.

We know that you are now taking deep breaths without worry or pain. Though we always will wish that you were taking them here with us. I look for you in the things we do every day.

Know that there isn't a second that goes by where we don't think about you. We love you so very much. We pray that when we are ready that you and God will bless us with another child. Until we meet again sweet pea...

hugs and kisses from Mommy and Daddy

A Walk to Remember...

A Walk to Remember...
Posted 17 hours ago
Steve and I decided at the last minute to go to the Walk to Remember for miscarraige, stillbirth, and infant loss today October 4th, 2008. We shed many tears, but it was so nice to know that we are not alone. I wish that no one was in this exclusive club.

It was beautiful to see so many families united to remember their little ones. One loss is hard enough and I pray that God blesses the families that held multiple balloons in memory of their children. The speakers spoke of "rainbow babies", those who are born after a loss and we were surrounded by many rainbow babies.

We walked down by the creek and as the names were called off we released balloons into the air. (Those of you who know my environmental side, it was hard to do this because its not good for the earth or wildlife, but the impact of the sight of all those balloons...) Because we didn't register in advanced, Faith's name was called near the end. Letting go of the balloons was very symbolic and healing. We sent a message to her up in heaven.

God sent us little pieces of our angel through out the day. The speaker at the walk spoke of how we imagine what our child would have looked like, what color eyes or hair she would have. I tell you that God showed us about 5 girls with blue eyes and blonde hair today. One of them even cuddle with me. I love that feeling when kids warm up to you so quickly. I knew my angel was with me and she was making that little girl feel safe. I was also wearing my necklace of Hope beads from Holden NICU. The little girl, Anna, who was probably about 2 1/2 kept saying butterfly, bumble bee, and house. Too Cute!

After the walk we enjoyed a picnic (with a rather large fly in our salad and 5 bees) and catching up with the Holidays. We enjoyed two delicious cupcakes from them for their girls' birthday yesterday. Maddie who celebrated her first birthday in Heaven and McKenzie who celebrated it here on Earth.

From there we went to work at the Red Flannel Festival in Cedar Springs. Steve's Star Wars group marched in the parade and raised money for the Make-A-Wish foundation. It was great to see everyone again. The little girl I mentioned above belonged to one of the families there.

This is long I know, but I wanted to share so much. I will also post some pictures of our day.

October 18th we will be in Ann Arbor for the Walk to Remember and hope to see nurses that cared for Faith, as well as some other CDH families of angels.

Take care,

Amy, Steve, and ^^Faith^^