Emma's Story

I found out that I was pregnant with Emma in June of 1998, my husband and I were very happy that I was pregnant because we had been trying for a few months to get pregnant. It is really strange because almost from the time that I found out that I was pregnant with Emma I sensed that something was wrong, you know that feeling in the pit of your stomach that we sometimes choose to ignore, well this is one of those feelings that I ignored, all through my pregnancy I worried but I just attributed it to this being my last child and just being a worried mother because after all, all the tests that I had when I was pregnant (AFP, ultrasound) were normal and I had two other healthy children and Emma moved a lot just like my other two. Thinking back now I remember sitting there feeling my stomach counting the movements and if she didn't move for awhile I would tell me husband "The baby isn't moving" then all of a sudden she would start moving. I also remember waking up at night and patting my stomach because the baby hadnít moved in awhile but then she would start moving and I would say well I was sleeping so maybe I didnít feel her move even when she was because I remember that happening with my other girls. I had all of these worries inside but I ignored them.

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Emma was due on March 6, 1999 but after 14 hr. of labor with no drugs she entered into this world on Feb. 25, 1999 at 7:24 am. weighing 6lbs 12oz. We were so excited to be having another girl she was normal all of her reflexes and everything she looked just like any new born, for about 3 weeks then all of a sudden things started changing which may have happened sooner but I just didnít notice because for the first week Emma was under Billie lights for jaundice and if she wasnít under the lights she was being taken to the hospital for billirubin tests. Now I think back and I was so worried about her jaundice and now I wish that was all that was wrong.

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When Emma was about 6 wks old I started putting her on her stomach so she could strengthen her neck muscles but she couldnít lift her head, we would try and try but nothing so I thought " Well maybe she is just behind let's just give her some more time".

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When she was about 8 weeks we went into the doctors for a check-up and he didnít think anything was wrong with her. I was looking at this chart in the room and it shows milestones and where your child should be at what age and I thought to myself " Well Emma is past that age and she still isnít doing anything", so I told the doctor " She is 8 weeks and when I put her on her stomach she is still not able to lift her head and he looked at her and said" Well she is a little floppy isnít she" but then said "Maybe she is just a little behind, lets just give her some more time and I am sure she will catch up". So I left the doctors office thinking that she was just a little behind so I went home and just continued watching her do nothing a healthy baby does, I would put her on her stomach and I could see that she wanted to lift her head but she just couldnít and it made me so upset. I remember watching her on the floor on her stomach crying because she couldnít lift her head and I thought that she was just maybe lazy but then I would sit there and cry because I think that deep down I knew that something was really wrong even though everyone kept saying things like, "She is a big girl and it is hard for her to lift all that weight" and I would think she is not that big yes she was long but she was not fat by any means. Then my sister would say "You just hold her too much she doesnít have time to strengthen her neck" which wasnít true because I would put her on her stomach all the time.

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 A week before her next check up I was so worried that something was wrong that I called the doctor and made an appointment for that day. When we got there I told the doctor "Emma is almost 14 weeks and she still canít lift her head and she canít reach for things, she doesnít kick her legs like she should and her breathing is funny it is really fast and her hands were always up by her head, she had a weak cough and a weak sneeze". The doctor looked at Emma and then started asking me questions that had to do with her milestones and I would tell him all that she can really do is make noise and blow bubbles. Then he looked at her again and I had to point out her breathing to him about how fast it was. The doctor went and got a pulse ox and her O2 was at like 98 ,he finally agreed that she needed to be seen by a specialist so he called the childrenís hospital and he told them what was going on and they told him to have me call and make an appointment. When I was leaving the office I asked the doctor what could be wrong with her and her said "Well it could be a wide range of things stuff that is really mild and then stuff that is really savvier" so I asked " Well what do you mean" and he said " Well she could just be behind and need some PT and then again it could be something genetic like Fragile X" (which I had heard of but didnít know what it was). I left the doctors office in tears and when I got to the car I talked to my husband and just cried I said " I know that it is something really bad I just have a feeling" and my husband trying to be positive just said I am sure that she is fine just a little behind and if she isnít then we will deal with it. When I got home I called my father and told him that we went to the doctors and there could be something wrong with Emma and of course my father said " No I am sure that everything it fine" and then I said " Do you really think so" and he said "Yes" then I said " Well if everything is alright I will pay you $100, it will be the best money that I have ever spent.

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June 15,1999

We finally went to the development clinic and Emma was looked at by three specialists, they all said that she was very bright (which we all knew). By the way that was the first time that I had ever heard her laugh and let me tell you it was the sweetest laugh that I ever heard. After the doctors got done looking at Emma one doctor came in and said " Well we think that she has something called Muscular Atrophy, now it isnít like Muscular Dystrophy in boys where they are in a wheelchair by the time they are ten, it is much, much worse." Well as you can imagine I was devastated because I had never even heard of Muscular Atrophy now she didnít say Spinal Muscular Atrophy, which I had never heard of either anyway. I asked her what it was and she gave me a brief description and told me that she will become very weak and that she would probably get pneumonia and die from it, well I thought then I will just keep her away from anyone that is sick and I will continue to nurse her until she is ten if I had to (not really) but for as long as I could and she wonít get sick and she wonít die. Then the doctor said that Emma needed to see a pediatric neurologist to confirm the diagnoses.

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June 18, 1999

We went to the muscle clinic at the children hospital and we saw a pediatric neurologist and when she came in she looked at Emma for about 2 min. and then she told use that she was pretty sure that Emma had Spinal Muscular Atrophy Type 1 and that she could possibly live until she was two but it was doubtful unless we decided to put her on a vent but even then she would still die and there was nothing that we could really do. Well Jeff and I were devastated, Jeff kept saying well could you be wrong, could there be a possibility that she could live and the doctor said " Well I have seen many children with this disease and there is always a possibility that I could be wrong so that is why we are going to have blood test to confirm it but I donít think that I am wrong she has all of the signs". Then they had the nerve of having a geneticist come in and start talking to us about if we wanted to have any other children that there was prenatal testing. Well I thought "First you tell me that my baby that I have now is going to die and then you start talking about us having another, I said no I donít want any more I want the one that I have now, I canít just replace her". Well now that I think about it that just wasnít the time to be talking about another baby first I had to deal with the fact that the one that I had was going to die and it was probably going to be soon.

We left the clinic and went to the lab to have blood drawn for the test and then we went home and we had to wait two weeks for the diagnoses.

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July 1,1999

We went the muscle clinic and they told us that Emma did have the deletion and she did have SMA type 1. We pretty much already knew that because of what the doctor told us last time and plus in the past two weeks we had done a lot of research on the disease so we knew what to expect, not saying that it made it any easier. That day we were referred to a doctor to have a placement of a g-tube. That day we also received a suction machine because Emma was already starting to have trouble with her secretions.

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July 6,1999

We had the consult with the doctor that was going to do the g-tube surgery and an upper GI was ordered to make sure that she didnít have any reflux problems and the surgery date was set for July 23,1999 at 10am.

In the few weeks before her g-tube surgery Emma did pretty well she was needing to be suctioned more and more and being in an upright position became difficult for her. The strange thing was that when we were out Emma needed to be suction all the time but when we were home she didnít need to be suctioned that much, so we just pretty much stayed home because we wanted everything to be as easy as possible for her.

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July 23,1999 Two days before she turned 5 months

Emma had her g-tube and Nissin surgery and she did great she came off of the vent right away so we didnít have to see her on it, thank goodness because I was really scared of that. She was in the hospital one day and then was able to resume nursing. We took Emma home on the 24th and she was doing good she had a little discomfort from the surgery but otherwise was doing great.

Within a week of her surgery she became much weaker and she wasnít able to nurse as well I was nursing her almost all the time and then she started to have milk come out of her nose because she wasnít able to swallow as well as she should be.

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July 29,1999

Stared using the feeding tube because Emma just wasnít sucking good enough anymore so we started using the g-tube for supplemental feedings, still trying to nurse her because she liked the comfort and that was fine but it really tired her out.

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July 30,1999

We received oxygen and a pulse ox machine because Emma was having periods where she would start turning colors and the doctors wanted us to have the equipment if we needed it.

 

In the next few days following Emma started becoming much weaker and she was on oxygen at night because the doctor thought that, that may help her sleep since she wasnít sleeping very well and it did help her for awhile but then she started not sleeping well again and she was very fussy. I had to stop nursing Emma completely on Aug.2 because she was having so much milk come out of her nose that we became worried that she might aspirate it into her lungs and we didnít want that to happen. Emma's swallowing ability became less and less and within a week of me stop nursing her she was no longer able to suck at all.

On Aug.4th Emma started having saliva coming out of her nose because she couldnít swallow it and that meant that we had to suction her very, very often it was no longer just a thing that needed to be done when we went out it was all the time.

In the next few weeks Emma just continued to go down hill, she needed to be given CPT treatments quite often and she needed to be suctioned a lot and sometimes the saliva would be so deep that we couldnít get to it even if we deep suctioned her, Emmaís chest was becoming even more narrow than before and her breathing was becoming more and more labored and it was getting really hard she had to really push her stomach muscles when she was breathing. It was so hard having to see her go through this and I knew that there wasnít really anything that we could do but love her and hold her and believe me that is what I did, if she wasnít sleeping either my husband or I were holding her we took full advantage of the time that we had with her.

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Aug.14,1999

On this day I went in to get Emma up in the morning and she had a bunch of saliva dried on her face apparently it had been coming out of her nose when she was sleeping and it dried on her. This was also the day that Emmaís grandfather did a bowling fund raiser for her and for the ĎEyes of Hope Foundationí. It was a pretty good success and Emma and the rest of us were on television so that was pretty neat because even more people got to see my beautiful Emma which is always good.

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Aug.21,1999

Emma was sleeping on my bed because she didnít have a very good night and then all of a sudden she woke up crying, I felt her for head and she was very hot I took her temperature and it was at 102.3 and she also had a cough. We gave her Advil and that seemed to break the fever but then it rose again as soon as the medicine wore off, she was also having trouble keeping her oxygen levels in the 90ís they were in the 80ís this time and her heart rate was in the 190ís. Finally after two days of a fever she finally started getting better, she was sleeping better and her O2 levels were up again which was a relief.

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Aug.29, 1999

This day was the last time that we were able to take Emma out in the car things just became to difficult for her and she was in too much distress when we were out so we decided that we would not try that again even though it was very difficult because I wanted her to be able to see things and meet people we just decided that this was best for her. I would take her out for walks with her two big sisters Marissa and Ashley and they all seemed to like that Emma liked looking at all of the things going by in her stroller and she loved watching her sisters play.

Even though Emma wasnít really able to do many things herself she always enjoyed watching everyone else, I remember every time that I would walk into the room when her Daddy was holding her she would just follow me around even though she was not able to move her neck very much she always managed to find a way to find me where ever I was in the room. I really miss that.

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Aug.30,1999

Emmaís hospice nurse gave us some medicine to help Emma sleep because even though she was on the oxygen she was still having a problem sleeping and since we all know how needed sleep is for our children because they really have to work extra hard during the day to do anything they need there sleep to keep their strength up.

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Sept.9,1999

Emma started breathing faster and harder and sometimes when she would take a breath she would wait about 10sec. then she would take another breath and it often looked like she was gasping for air. We spoke with Emmaís nurse about it and she said that it is just a sign that Emma is getting weaker.

Jeff and I decided that in the beginning we were not going to do anything if Emma stopped breathing or got an infection, we decided that, that wasnít the way that we wanted to take things and from the way Emma was deteriorating so fast we knew that it probably wouldnít hold off the inevitable for very long.

One Sept.10th Emma started having this bright yellow stomach bile come up her g-tube whenever I would go to feed her. I called the nurse and she didnít now what it was so I called the doctor at the muscle clinic and she said " Well maybe she just has a stomach bug or just an upset stomach, just give her Pedialite and it should go away".

Well we tried the Pedialite and it did seem to help for awhile but then it was happening more and more, I just had a gut feeling that something more was going on with my precious baby that nobody really understood, so even though I had this feeling I continued to give her the Pedialite every time that it would happened.

Over the next few weeks Emma continued to go down hill and we knew that in our hearts that our sweet Emma didnít have much time. Emma wasnít able to keep her oxygen levels up at all her O2 was set at 2 liters and that didnít seem to really help her, her levels were getting worse and worse each day, she was more tired and her body slowly started to reject her feedings first it was 10cc then 15 then 30 then 60. She was very pale all the time because of her oxygen levels, she was very very fussy. Even though she was so tired she always tried her best to smile and make her Mom feel better, I was so thankful that I got to still see her smile because I knew that it was just work for her to do that.

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Oct.2,1999

Emma was not able to handle her feedings she was sleeping all the time and her oxygen levels were so low that I donít know how she was still alive, her little body was trying so hard to reject her feedings that if there was some still in her tummy that she couldnít digest her body found a way to push it out around her g-tube. We called her hospice nurse to come and take a look at Emma and from what she saw she said " Well from what you have told me about her feedings and her oxygen and from the way she looks it probably wonít be long, now I canít say for sure whether it will be a few weeks or just a few days but from the way she looks it will probably only be a few days". Well just from looking at her and knowing her and from just being her Mommy I knew that it wouldnít be long.

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Oct.3,1999

3:30 am I went into her room to feed her and she was still asleep but I got her up anyway I changed her diaper and I put her on the pulse ox and it said that her O2 was at 23 and I could see that she was having to breath fast and I watched to see how fast her breathing was and it was 53 which was very fast. I opened up her g-tube to feed her and 1 1/2 oz came back from her last feeding that was over 7hrs ago. I thought that I knew deep down that she was going to go soon. I gave her some Morphine that we had only used once the day before and then I just let the formula that she still had in there go back and I gave her 1 oz more, I rocked her for awhile and she went back to sleep and then after awhile I put her back in her crib and I tried to go back to bed (which I never should have done). 7:30am My daughter Marissa woke up so I got my husband up to get up with her and I told him what had happened earlier that morning and then we had a conversation about the whole thing then I checked on Emma and she was still sleeping and I told him that know matter what at 9am he needed to get her up and feed her, so I tried to go back to sleep. 9:05am I woke up went to see if my husband was feeding the baby and he said that he was just about to, then he went into her room and got her up and I had told him to put her on the pulse ox because I wanted to see what her O2 was at, Jeff called me into her room because her g-tube had leaked again and her clothes were all wet, her pulse ox wasnít registering because her O2 was so low. I looked at my sweet girl and she just really looked like she wasnít really there anymore that it was just her body holding on, she did manage to open her eyes one last time and look at Jeff and myself and then she closed them again. We called our families and told them to get over to our house right away because she wasnít doing well. I was in the process of changing her clothes, I turned to get something out of her changing table and I said "Please GOD just let her go" then I turned around looked at Emma ,she took two breathes and then she stopped breathing. It was at 9:28am.

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I miss my girl so much but I know that she is alright now and even though I wish that I could hold her in my arms I know that I am still holding her I just canít see it physically. Emma brought so much joy to our lives in the short time that she had here and I thank her for that, I am privileged to have gotten the opportunities to met her and be her mother, the only regret that I had was not picking her up and holding her right away but honestly even though I knew that it would be that day I didnít think that it would be that soon, I truly think that she was waiting for Jeff and I , so she could just see us one more time and think " I know that you are here and I know that you love me so I am ok to die."

Rest in Peace my sweet Peach

Feb.25,1999-Oct.3,1999

7 months and 9 days