Encouragement

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I first wrote this story of Faith Elizabeth Doyle back in 2002. I since then fixed it up a bit. It is about the life of our (my husbands and my) first child. I pray that it would encourage any and everyone that reads this story.



This letter is dedicated to all those people who prayed for baby Faith, to my family, and friends. Also to the many people who have been and will be touched by her story.



Greetings, my name is Jeanna Doyle. In the year 2000, I gave birth to a daughter; her name was Faith Elizabeth Doyle. She was a full term, 7 pounds, 4 ounces healthy baby girl, or so we thought. She was born via C-section (cesarian section) August 19th at 2:45pm. Everything seemed good; she had 5 fingers on each hand, 5 toes on each foot, 2 eyes, 2 ears, a nose and a mouth. She was what we considered the most beautiful baby girl ever. As Faith and I started to bond, I couldn't remember what it was like without her. I mean how did my days go without such a beautiful girl as her?

By 8 o'clock that night, I still hadn’t gotten her to feed (I wanted to attempt breast feeding). She seemed very sleepy and all that she did was cry. I didn't know what I was doing wrong. I mean I know that she was my first child but surely it isn't supposed to be like this. The nurse assured me it was normal. She was going to just take her back to the nursery and give her a bath. “That should wake her up,” she said. And at that point my life changed...

My husband had gone home for the night, and I tried to get some rest before they brought Faith back to me. A short time later, David, my husband showed up. Then a nurse came in and told me that they had a private room just for me. So they moved me into my own room. About five to ten minutes later my parents showed up. They had gotten a phone call to come back to the hospital; the nurses and doctor wanted to talk to them. And finally my husband’s parents showed up. I knew then that something was wrong.

The doctor came in and closed the door, the room had a very strained feeling to it. When he turned to face me, I knew, I just knew then that there was something wrong with my Faith. He greeted everyone as pleasantly as he could, then cleared his throat “I am glad you all could make it back,” he started. “One of the nurses noticed that Faith still has purple hands and feet. We think there is something wrong; we called the Royal Alexandra and University Hospitals in Edmonton. They are sending a specialist out to take a look at her.” I lost it there I just cried, and cried, and cried. Everyone couldn’t believe what we were hearing. Our daughter our only child wasn’t doing so good. But why? I mean the doctor told me from the time that I was seventeen weeks pregnant that I had a healthy baby. So why did this suddenly happen? I know that from the time that I found out that I was pregnant to the time that I was 6 months pregnant I bleed off and on. And even though I was put on bed rest and my activities were restricted, the doctor told me that the baby was healthy. So this can't be, it just can't be!

My parents called our pastor and let them know that Faith was having trouble breathing. All we could do was wait. It was about this time that my doctor arrived on the scene. He had gone to a conference and wasn’t support to be back until the next day. When he heard about baby Faith he was very disturbed, he had to go and take a look at her for himself. It was a little easier knowing that my doctor was there and that he might be able to tell me something that the other doctor declined to. At 2am August 20th, the ambulance came to pick our daughter up and take her to the Royal Alexandra. They had found a bed in the Neo-natal Intensive Care Unit (or NICU) and I was to go there in the morning.

They brought Faith in one last time before the ambulance took her away. She looked so different - they had put tubes all over her. They had a breathing tube in her that helped her to breath, and a heart monitor to watch her heart rate. It made me feel like I needed to get up off the bed and take her off those contraptions and just hold her, she seemed so far away from me. But what could I do. They gave me a picture of Faith just before they put the breathing tube in, and they said that it was the first time that they had ever seen a Polaroid picture turn out that good. What a small comfort to hear that. (Little did I know that that small seemingly insignificant picture would help me get through the hard days to come) My parents went home to try and get a couple hours of sleep. David was brought a bed so he could stay with me that night. No matter how hard I tried I just couldn’t sleep. I couldn’t stop thinking about my baby Faith.

We had been told that they would come and get me around 8:00, 8:30am that morning and take me to the Royal Alex. so that I could be closer to Faith. At about 6:50am the nurse came in and told me that the ambulance would be here in about 10-15 minutes to take me to Edmonton. The nurse had already taken the liberty to call my parents and tell them that I would be leaving soon, they were on their way. The doctors were very concerned about Faith and they wanted to do some tests on her so they needed our permission over the phone to take her blood. The ambulance allowed one person to accompany me on the way to Edmonton so my mom came with me and David, my husband went with my dad.

I arrived at the Royal Alex early that morning; all I wanted was to go and see my daughter and make sure that everything was all right. Since I hadn’t gotten up out of bed yet the nurses said they would try it nice and slow. I had a nurse there to help me sit up (since I had a c-section they put a needle in your back called a spinal and it makes everything from about mid-back down numb and useless.) When I finally sat up they said they would let me sit there for a minute. If I didn’t get dizzy, they would have me walk the two steps to my wheel chair, see how I was doing, and go from there. Well after I got to sitting on the edge of my bed I felt a little woozy, but after a minute or two it went away, (yes, I will get to go and see baby Faith). A nurse helped me to my feet; I got a little dizzy, but after a few seconds it cleared, now just two more steps to go, then turn around and sit down. As soon as I sat down I got really dizzy. Well maybe if I just sit here for a minute it will go away. About a half a minute later, a nurse took one look at me and asked if I needed to go back to bed. I didn’t hear her. I almost blacked out. At that point, the nurse said that I wasn’t ready to go see her. I cried. All I wanted was to see Faith. So two nurses helped me up and back into bed; I would have to wait until later that day to see her. They encouraged me to get some rest to help regain my strength. I didn’t realize how tired I really was. I was heart broken, but what could I do. I couldn’t get up on my feet yet. My family decided to leave, so as I could try to get some rest. I hadn’t slept in two days …

What seemed like only minutes later, my family came back. They had toured the under ground tunnels and come across a little restaurant and had lunch. They had been gone a couple of hours. That afternoon the nurses came back and asked if I felt up to trying again. Of course, I said, "Yes." So again I slowly sat up at the end of the bed, this time I felt pretty good. I didn't get dizzy at all. Then a nurse helped me to my feet, now just two steps to the wheelchair, now one, that's it Jeanna you're doing it. Now just turn around and sit down. They left me in the wheel chair for a few minutes to see how I felt. Since I didn't get dizzy they said that I could go see Faith. So, slowly but surely I made my way down the hall, over the overpass, up an elevator, down another hall, and into the NICU. I was informed that I needed to wash my hands in order to keep the germs down to a minimum, and avoid getting anyone sick. So after I washed my hands David took me to see my daughter for the first time since saying goodbye just before the ambulance took her away. She looked so different, there were so many tubes, so many lines coming and going. Faith's nurse saw us and explained what everything was, The lines coming out of her belly button. "These were called Life Lines. They give her food, allowed us to take her blood so we didn't have to constantly prick her with needles, and give her medicine. There is a monitor that keeps track of her blood pressure, heart rate, oxygen to hands and feet, and something that tells us if she is breathing on her own or not." I just wanted to take everything off, hold her and tell her everything would be OK.

The doctor thought that she just had a case of pneumonia, and that she would be home with us before the month was through. We needed to give them information, like when she was born, how many weeks along I was, they even asked if it ran in the family for people to have high arches in their feet. Can you believe it, here was our daughter on a ventilator, and they were worrying about her feet. I couldn’t stand to see it any more I needed to get out of there. I couldn’t handle to see my baby in that much pain I know that they told me she was sedated but that knowledge brought little comfort to me. I was going to cry, but not here, not now. Hurry! I want to go back to my room, I want to cry...

The next day they asked if they could put her on something called ECMO, ( ECMO stands for- Extracorporel Membrane Oxygenation- it allows sick or injured lungs some time to get better.) ECMO is similar to the lung- heart bypass but specially made to be used for longer periods of time. It takes her blood and filters it through a machine and then gets pumped back into her. Hopefully this would work for her.

Some things to remember with ECMO are that you are only allowed to be on it for no more then ten days or it would do more damage then good. If a child is younger then 38 weeks gestation (in mother’s womb) then they are unable to do ECMO on them.

At the same time that they placed her on ECMO we were informed that her lungs were underdeveloped, they were too small and that with ECMO it would give her lungs a chance to rest.

On August 23, 2000, just three days after Faith had been on ECMO, they decided to take her off, for she was doing remarkably well. At 2:30pm that day, she was relieved of the machine and back on the breathing tube. It actually felt good to see her on the breathing tube for once – a step towards her coming home.

The next day we were blessed to find out that they weren’t sedating her as much as they were before. Oh, did that feel good to know. Maybe by next week we would be looking at our daughter without all the tubes. We could go home and be a normal family...

During this ordeal, I discovered that my incision from my c-section had become infected. They had to reopen the incision. Three times a day they had to clean in out and stuff the incision with gauze sponges, so it healed from inside out. It was a very painful procedure, and I hated it being done. I couldn’t even begin to imagine what was going through David’s mind, both of his girls (me, his wife, and Faith, his daughter) weren’t doing so good. At least Faith was getting better right? Guess again.

On Sunday, August 27, 2000, we were informed that Faith was slowly getting worse. They couldn’t figure it out, she did so well on ECMO, how could she be getting worse again. She can’t get worse, she’s not allowed!!!

They had to check her Hemoglobin (iron containing pigment in red blood cells responsible for the ability of red blood cells to carry oxygen). Almost every time they checked it the news came back, her Hemoglobin was low, she would need more blood. Her oxygen was averaging at 79%. You must understand that for a healthy baby, or any person, your oxygen level is closer to 25%, so she was requiring a lot of help to breath. It was heartbreaking to sit there and look at your daughter, your only child, in such pain - with tubes coming out of her belly button and from her mouth.

From the beginning of this ordeal, Faith was always praised for her strong heart. Everyone was amazed at how strong her heart was. I always tried to remind myself that her heart was strong. And that got me through it a little easier.

I sat by her bed day after day after day. I felt so helpless looking at her and not knowing what to do. All I could do was sit, watch and pray. I don't think that I ever prayed harder or longer in all the days of my life. I was always hoping that I would come to see her and they would tell me that they moved her to a different pod, and that she was no longer requiring the breathing tube. I was always disappointed though, for every time I went to see her she was still on the breathing tube.

Then came the hourly (or half-hourly depending on how she was doing) cleaning of her lungs out. I hated watching them do that - putting the suction hose in, and taking it out again and again until her lungs were clean. I hated the pain it put her in. The look of choking and the crying face it caused her to make. It made me want to jump up, push the nurse away, demand they never do that again. And walk out with her in my arms. But I couldn’t, this was helping her to breathe and would allow us to bring her home someday. So after the ordeal, I would comfort her and try to make here feel better. I’d tell her that someday she would be in the car and coming home with her mommy and daddy, and there would be no more tubes. Someday really soon...

August 30th, I was released from the hospital, I was glad to go, but sad that my little girl wasn’t coming with me. On August 31st, 2000 they did a biopsy on Faiths lungs to hopefully tell us why she was having trouble breathing. They had decided that it was not a case of pneumonia but something else so they said that this would help to find out what they could do to help her get better. So we gave the permission for the operation. That was one of the hardest things for us to do. What if something goes wrong? What if I never get to see her again. And then I was reminded of something that I read. "Put your trust in him," and "Trust in me always," I guess that I wasn't doing that was I. So I did just that, I gave the situation over to someone who could help. I gave my worries and fears to Jesus.

My family and I sat in the NICU waiting room, sitting and praying. An hour went by, then two, and finally the nurse came in and said the operation went very well. I could go and see her now. As we went the short distance to the NICU, She warned me, “Faith has another tube.” It was a chest tube to drain the fluid out of her chest. Oh, no, not another tube. What have I done! Can’t they see she has enough of them already? But now she needs a chest tube. Oh, God, save my baby, save her from this pain.

As we washed our hands so we could go see her, I just prayed that the doctor's eyes would be opened and that they would know how to help baby Faith... I was not prepared for what I saw. I burst into tears, as I saw my baby with this huge tube sticking out of her upper right chest. Oh, the pain she must be in. "Oh, Lord, please, please, touch and heal my baby. Lord, I hate seeing her in such pain!" I prayed.

After a few minutes, I brought my family in one by one so they could see her. None of us liked seeing her how she was and everyone was upset when they saw the tube.

When I came back to see her the next day the doctor informed me that they thought they found what was wrong with her, I thought to myself "Great now they can fix her and I can take her home." WRONG. He informed us she had a rare disorder called CONGENITAL PALMINARY LYMPHANGIECTASIA. It was where the Lymph vessels (vessels in the lungs that bring that white stuff around to the body when you get hurt so in can clot your blood) are two big and in the wrong spots (in this case too high up in the lungs). Therefore interfering with your lung's ability to operate properly.*

After a moment, when we had calmed down so we could listen again, he said we had two options. One, try for a lung transplant or two, let her go.

He continued to explain that with this disorder it did not usually only happen in the lungs. It would be lungs and brain, lungs and heart or, lungs and intestines. If we decided to go for the transplant they would have to do another series of biopsies. This was devastating, the heart that the doctors were always praising might have the same problem as her lungs!

When I asked the doctor the percentage of successful transplants, I was even more devastated. He said they couldn’t give me the percentage of children making it to a transplant, but only half of those that make it to the transplant make it through it alive. If she survived she would then have less then a 25% chance of living to the age of 3. So in other words I had a choice. Let my daughter go now, or let her go later. I didn’t like the option of either of these. So, God would just have to heal her.

David and I set up a prayer service for baby Faith at the hospital. It took place September 5th, 2000. We stood on faith that night that God was going to heal baby Faith with no transplant.

On September 9th, we had a meeting with the doctors again, he wanted to know what we decided. We told him we didn’t know yet. We asked the doctor again what he thought we should do. And again he said he wasn’t allowed to say. If we decided to go for the transplant it would mean moving to the eastern side of the United States.

Over much disagreeing, we finely decided to take her off the ventilator and believe for God to heal our little girl. It was a hard decision to make but we thought it would be best.

On September 10th, 2000, David told the doctor we wanted to take her off the ventilator on Wednesday night. He agreed with us that it was the best thing to do for her. The ordeal for trying for the transplant would have put her through much pain. We decided that we would take her off at 8pm September 13th, 2000. At hearing that the doctor said we could hold her. Hold her, hold her! The doctor said I could hold my baby! I was so happy that I could hold her. They wouldn’t let me hold her before, because they said it would have a negative effect on her, so all I was able to do was touch her. But since we were taking her off the ventilator on Wednesday, I could hold her! So, after a two hour preparation time to get everything arranged, three nurses, picking my baby up ( so as nothing got pulled and to put as little stress on her as possible) and my wonderful father holding a wad of tubes, I was able to sit there for 40 minutes, and just hold my baby. Oh, it felt so good, thank you Jesus for this special gift that you blessed us with. Thank you for allowing me this special time to hold her and to tell her that I love her, and that I always will. You know something funny happened, you see she had been fussy prier to me holding her, but once I held her she calmed right down as if to say “Hi mom, I’ve wanted this for a long time.”

The doctor and nurses settled themselves in for what they expected to be the worst night with her. It turned out to be the best night ever. They only had to suction her out three or four times that night (compared to her norm of once or twice an hour) and her oxygen went all the way down to 31% the best it had ever been. Praise God! Give the Glory all to him. He is truly watching over my little girl. They even weren’t sedating her quite as much as they had been. What a blessing it was to hear that news. The doctors always said that if they allowed her to fully wake up that they would have trouble with her oxygen level and that it would sky rocket to 99 or 100%. Now they are allowing her to be awake and her oxygen level was the lowest it had ever been. The nurses where totally amazed at what she was doing. She was even taking breaths today. That had been another thing that they were concerned about. That if she woke up that she would fight the ventilator. But she wasn't. She was working with it. Oh, it will be so fun to shop for clothes for her. I don't have any girl clothes for her, all that I had at home was clothes for a boy.

Monday, September 11th, 2000, the nurse let me change her diaper, clean her mouth out, and put lotion on her. This was the first time I felt like a mother. Oh, I enjoyed doing those things for her. I was able to hold her again today, as with the day before she had been fussy before I got to hold her. As soon as the nurses put her in my arms, she settled down and fell asleep in my arms for the full two hours I held her. I took the opportunity to pray for her and just put her in God’s hands. He was in control of the outcome on Wednesday.

I had been staying at my aunts house ever since I was discharged from the hospital September 1st. I was greatly blessed to be able to stay somewhere close to my baby. It was much easier to see her when it was only a twenty-minute drive verses a two-hour drive. I enjoyed the visits with them and the getting to know them.

On Wednesday, September 13th, 2000, we arrived at the hospital around 1pm and to my disgust the nurse for that day had heavily sedated her again. In my anger I told her to “Wake her up. This was the last day I have with her so you wake her up. I want to look into her eyes, not at a limp body!” Oh, it made me mad! I mean the last day she was here and they had the nerve to sedate her! What were they thinking! It wasn’t even like she had taken a turn for the worse over night, she was actually doing pretty good. The nurse replied that she would have to write it down in her book that I insisted upon her waking Faith up, and that she wouldn’t be responsible for it. I was like, this is my daughter, and we take her off the ventilator tonight and I want her up and if anyone has a problem with it they can come see me, now WAKE HER UP! So I took a big breath and we waited for the sedation to wear off. (Needless to say I wasn’t to fond of this particular nurse.)

Around three that afternoon, we were informed that they were going to move Faith into a special room all for herself. They advised us not to be there when they did that as it would be pretty hard on her. So we had to give them a hour so they could move her and her belongings over, and get her settled. Around 6pm that evening our family started to gather, we were going to take her off the ventilator at 8pm.

At 7:20pm we almost lost her. One of her tubes clogged and she couldn't breath. An alarm went off and six nurses ran into the room. They searched franticly for the problem tube. A few minutes later they found the problem and were able to fix it. They tried so hard, we weren't ready, not yet, no, Lord, not now. I'm not ready, you can't take her!

You have to understand something, since we told the doctor that we were going to take her off the ventilator he wrote in her book that there was to be no resuscitation done on her. So the nurses didn't have to try and save her, actually they weren't supposed to. I was so thankful that they tried so hard, all I could do for five to ten minutes later was watch the screen until all evidence of the experience was gone. My mother who had gone to see if David's parents arrived yet came in shortly after, she took one look at me and knew what had just happened. To this day I am ever grateful to those nurses who came in and saved her.

Eight came and went that night and there was no doctor. The reception desk forgot to call him. It was hard for us, since we had all been geared up for her being taken off at eight. So we got to spend more time with her. The doctor arrived shortly before 9pm. He double checked with us, to make sure that we really wanted to do this, we said yes. We were warned that once she was off the ventilator she would only last a few minutes. At 9pm she was freed of all tubes, and the ventilator, I was so looking forward to hearing her cry, that was all that I wanted to hear, was her cry. As they gave her to David I looked over and she started to cry, but there was no sound. At that point I burst into tears, no one warned me that she wouldn't be able to cry. WHY DIDN'T THEY TELL ME!!!!!

As David held her I couldn't help but notice she had beautiful red hair and wonderful blue eyes. We had given her a pink take home outfit to wear, she looked so beautiful. The whole time that we had her in our arms we prayed, prayed that God would have mercy on us and heal baby Faith. At 9:20, I was given Faith to hold. She was the most precious gift anyone could ever give to me. You could tell that she was having trouble breathing now, as her breaths became more labored and farther apart. We kept praying and hoping for the miracle that we wanted... At 9:35 that evening Faith got to go home. She went to Heaven in her mommy's arms. That was the hardest thing I ever had to do. Just before she went I had told her that it would be okay. And that God would take good care of her. After the doctor came in and announced that she had passed away we let our parents, and siblings hold her. The doctor was amazed that she lived that long off the ventilator, he was thinking maybe four minutes tops. At two am September 14th, 2000, we said goodbye to her and left for home.

Oh I wish she could have come home with us. I love you Faith! I love you and will never forget you! You will always be my special little girl. Faith, God is going to take good care of you. You will have lots of fun up there in Heaven. Some day your daddy and I will see you again. I look forward to seeing you. I love you very much. I will never forget you.

With all my love,
Mommy



On May 30th, 2002 God gave us another special blessing. At 10:31pm, weighing 9 pounds 1 ounce we welcomed Josiah Michael McKay Doyle into our lives. God has truly blessed us. Not only with a little girl to raise for those 25 short days, but with a healthy baby boy.
I pray that this letter may someday give someone out there the strength to carry on through the hard times. God is always with us and he carries our burdens (if we will let him). I have never and never will regret having baby Faith, she taught me many things, especially how to trust God. You know what? God did answer our prayers of healing. We may have prayed that he heal her lungs so that we as a family could go home, and that she would no longer be in pain, but God always knows what is best. Besides, he did heal her, and she is no longer in any pain and never will be, he just did it his way by bringing her home – to Heaven – to be with him. What more could I ask for, then to get to know my baby for those precious 25 days.


Dear Faith,

You are such a special girl. Did anyone tell you what you did here? You did so much, you brought communities together, (ours for one) families together (my fathers side for another). Faith you had so many people praying for you. You brought churches together like never before.
Let me tell you a story about this one man. He had seen the sign at our local ESSO that read "BE PART OF A MIRICLE PRAY FOR BABY FAITH". Well he was quite curious about you so he asked. Your story was very touching to him. Every time he came to town (he was a truck driver) he asked how you were doing. One day the sign at ESSO changed, it read "FAITH IS WITH JESUS THANK YOU FOR PRAYING". He got really upset and asked how we were doing. Someone told him we were doing okay because we were Christians and we knew that we would see you again some day. He was still really upset so they suggested that he go and talk to a pastor. He did. He was so touched by what he heard about you and God's forgiveness that he became a Christian. Isn't that wonderful? Faith, through you God was able to do so much. I don't know if anyone else became a Christian, but God knows. Did you know that you had people from all corners of the world praying for you? Just to give you one example, there were people in Africa that were praying for God's mercy upon you.
Did I tell you, for your funeral we were able to put you in another pink outfit? You had little socks and a bonnet on too. Oh yeah, don't forget the blanket that your great grandma made for you. You were given another pooh bear from mommy and daddy, and a little teddy bear from grandpa and grandma. Well I better go, I love you.

Love from,
mommy









*
Information came from: www.auntminnie.com/ScottWilliamsMD2/chest/congenital/Lymphangiec/Lymphangiectasis.htm
Pulmonary Lymphangiectasia:
Clinical:
Pulmonary lymphangiectasia is a rare disorder that is seen more frequently in males. It occurs secondary to a developmental defect which results in obstructive, dilated lymphatics and subsequently "wet lungs" (ie: there is arrested lymphatic development). Patients may present with severe neonatal respiratory distress, cyanosis, and death. There are questionable associations with familial cases, Noonan's syndrome, and Ichthyosis congenital [1]. There are 3 forms of the disorder:
1- Isolated Pulmonary: The developmental defect is isolated to the pulmonary lymphatics. Felt to be related to failure of regression of the pulmonary lymphatics after the 16th week of gestation. It results in severe interstitial lung disease and has a poor prognosis. Rarely children may live beyond the neonatal period.
2- Secondary to Pulmonary Venous Obstruction: This form is associated with congenital heart disease and accounts for 30% of cases. Cardiac abnormalities include: Hypoplastic left heart, total anomalous pulmonary venous return type III, and pulmonic vein atresia.
3- Generalized: (Systemic)- Characterized by lymphangiectasia throughout the body. The pulmonary manifestations are typically mild. Patients may have an associated lymphangioma.
X-ray:
On CXR, pulmonary lymphangiectasia is characterized by hyperaeration and a diffuse, coarse, reticulo-nodular prominence to the lung markings. Focal cystic areas may be seen. Chylous pleural effusions may also be seen. If the disorder is systemic, UGI exam will demonstrate thickened small bowel folds due to enlarged submucosal lymphatics.
REFERENCES:
(1) AJR 1999; Chung CJ, et al. Children with congenital pulmonary lymphangiectasia: After infancy. 173: 1583-1588

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