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Re: [Tracheostomy_infants] might have posted before but

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  • david wineski
    Donna, Thank you for posting your message. I was very moved when reading what you and your family have been through. Emma sounds like such a fighter and I
    Message 1 of 5 , Feb 1, 2004
      Donna,
      Thank you for posting your message. I was very moved  when reading what you and your family have been through. Emma sounds like such a fighter and I can't wait to hear what God does in her life. I was reminded while reading her story of the times when my husband and I stood helplessly in the NICU, desperatetly crying , on our knees praying for our little boy while the dr's were working to get him breathing again. We lived hours during those endless minutes. Like you, I also prayed that if it was not God's will for Joseph to live, to please just give me the strength to accept His will.  
       
      Today, I am happy to say that Joseph is still with us and 5 months old. He still has many issues and frequent infections, but he is getting stronger and may be finally coming home in a few  weeks on a home vent.
       
      God bless
       
      Nathalie
       



      -----Original Message-----
      From: missbrady617
      Sent: Jan 31, 2004 7:56 PM
      To: Tracheostomy_infants@yahoogroups.com
      Subject: [Tracheostomy_infants] might have posted before but

      My name is Donna and on 9-6-03 I had a baby, Emma Jean, she was 15
      1/2 ozs. At birth, she was 26 weeks and 6 days, the delivery was a
      cesarean section because I had preclampsia and reverse end-diastolic
      flow (meaning the baby was not getting the blood she needed to grow)
      she was born at 21:43. At delivery she was active and I did get to
      hear her make 2 tinny cries before they took her and tubed her, she
      went right to the NICU where she stayed 110 days before we could take
      her home.

      We had a very long road ahead of us,
      we have had or still have respiratory distress, apnea-bradycardia,
      patent ductus arteriosus, thrombocytopenia, hyperbilirubinemia of
      prematurity, mild acute renal failure, and as with most baby's born
      before there time yes she has severe BPD, gastro esophageal reflux,
      poor growth because of the steroids she is been on to help her breath
      better. Oh yes I almost for got the ROP but that is getting better on
      its own.

      We have been on a ventilator, a oscillator and a jet ventilator nasal
      CPAP, nasal cannula back to the ventilator, this started from day one
      till they said the words to us that we didn't want to hear a
      tracheotomy. On 11-27-03 we went to surgery and they did her
      tracheotomy and a partial nissen and G-tube.

      Ok enough about what the Doc's say is or was wrong with her, here is
      some of what we had to deal with in are stay in the NICU. It was long
      and hard to deal with. The days and nights just all started to become
      one long day. Little Emma was so tinny they wouldn't let us touch her
      at all. We would go to sit with her feeling there was nothing we
      could do for her to make her feel better. She was just so tinny and
      sick. No one thought she would make it more then 24 hours, her 2nd
      day of life I was awaken by a Doc in my room telling me the baby
      stopped breathing and was dead for 20 minuets but they got her back.
      Now we had to worry about a brain bleed. But thank God she never had
      one. Time and time again she would stop breathing and we would worry
      we would lose her. One night when we went to see her at 8 pm there
      was a mix up in cleaning out her air way she stopped breathing and
      her heart stopped also we where there to see are tinny little angle
      die yet one more time. They had to give her meds to get her heart
      started again and they had to re-tube her. Dad stayed with her most
      of the night, holding her hand trying to make her feel better, the
      next day we went back in the morning to see her and she was doing
      great for Emma. Then later that night we went to get something to eat
      and then back to see Emma at 8pm, but that night when we walked
      around the corner there was to many people around her bed. I thought
      to my self not again I couldn't take another night like last night. I
      started to pray as I walked closer to her bed where there was
      doctors, nurses, respiratory people, they where all working are
      little girl again, I just started to cry and pray. I asked God to do
      what was right for her not for me. If it were better for her to go
      and be with him then I would find a way to deal with that but if it
      was not her time then let her live. No matter what I just kept asking
      him to stop her pain. I looked at the clock and she had been down for
      12 min this time, they could not get the new vent tube in this time
      and every one was looking like this was it, it was over and we had
      lost her. Then they tried one more time with a stylist no matter what
      it would do to her voice box. I didn't care what it took as long as
      she was still with me, it went in and she was breathing again but on
      a vet and 100% o2.  From there we had some ups and downs but none
      like that, she went from the vent to the Cpap, back to the vent. Then
      one day she was doing great and we where going to be moved up to the
      step up part of the NICU (that is where babies stay and grow so they
      can go home)
      they moved her and 20 min later she started to breath really bad and
      they didn't know what was wrong with her. Again we where moved back.
      She wouldn't keep her sats up over the high 70's. This was a
      Thursday, this went on like this till Monday, and they kept telling
      us if it didn't get any better we would have to again go back on the
      vent. I was so worried if that happened she would never get off it. I
      again prayed like I never prayed. I asked God to take me and let
      live, I asked him to stop her pain no matter if that meant I would
      lose her. I just didn't want to see her hurt any more. Then Monday
      morning they had to do it, again back on the vent but this time the
      tube would not go in. after some time the Doc did get it in. well
      Emma didn't want the tube in and about 2 hours later she pulled it
      out and back on the nasal cannula she went. What was happening was
      she would stop breathing for a short time and shot off her air way.
      They then called an ENT Doc and he said I feel the best thing for
      Emma is a trach. So the next day she went off to get one. WOW what a
      different baby she is today. After 110 days in the NICU we got to
      take are baby home.

      She has been back to the hospital a few times now and we will be
      taking her home this time on a cpap but that is ok as long as we have
      her with us. She eats most of her food by mouth but when she don't we
      use her feeding tube

      after all this she is now 4 lb.8ozs and she is almost 5 months old. A
      very happy baby. I thank God every night for giving me one more day
      with her


      sorry its so long but i just needed to write , hope no one minds
      God bless

      Donna Mom to Emma Jean former  26 weeker 15 1/2 oz at birth. now
      almost 5 months and 4lb8oz




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    • bhijazi@sympatico.ca
      ... he suffered just like your little girl thank oyu for sharing your story it gives ,me hope Bridget ... My name is Donna and on 9-6-03 I had a baby, Emma
      Message 2 of 5 , Feb 1, 2004
        My name is Donna and on 9-6-03 I had a baby, Emma Jean, she was 15
        1/2 ozs. At birth, she was 26 weeks and 6 days, the delivery was a
        cesarean section because I had preclampsia and reverse end-diastolic
        flow (meaning the baby was not getting the blood she needed to grow)
        she was born at 21:43. At delivery she was active and I did get to
        hear her make 2 tinny cries before they took her and tubed her, she
        went right to the NICU where she stayed 110 days before we could take
        her home.

        We had a very long road ahead of us,
        we have had or still have respiratory distress, apnea-bradycardia,
        patent ductus arteriosus, thrombocytopenia, hyperbilirubinemia of
        prematurity, mild acute renal failure, and as with most baby's born
        before there time yes she has severe BPD, gastro esophageal reflux,
        poor growth because of the steroids she is been on to help her breath
        better. Oh yes I almost for got the ROP but that is getting better on
        its own.

        We have been on a ventilator, a oscillator and a jet ventilator nasal
        CPAP, nasal cannula back to the ventilator, this started from day one
        till they said the words to us that we didn't want to hear a
        tracheotomy. On 11-27-03 we went to surgery and they did her
        tracheotomy and a partial nissen and G-tube.

        Ok enough about what the Doc's say is or was wrong with her, here is
        some of what we had to deal with in are stay in the NICU. It was long
        and hard to deal with. The days and nights just all started to become
        one long day. Little Emma was so tinny they wouldn't let us touch her
        at all. We would go to sit with her feeling there was nothing we
        could do for her to make her feel better. She was just so tinny and
        sick. No one thought she would make it more then 24 hours, her 2nd
        day of life I was awaken by a Doc in my room telling me the baby
        stopped breathing and was dead for 20 minuets but they got her back.
        Now we had to worry about a brain bleed. But thank God she never had
        one. Time and time again she would stop breathing and we would worry
        we would lose her. One night when we went to see her at 8 pm there
        was a mix up in cleaning out her air way she stopped breathing and
        her heart stopped also we where there to see are tinny little angle
        die yet one more time. They had to give her meds to get her heart
        started again and they had to re-tube her. Dad stayed with her most
        of the night, holding her hand trying to make her feel better, the
        next day we went back in the morning to see her and she was doing
        great for Emma. Then later that night we went to get something to eat
        and then back to see Emma at 8pm, but that night when we walked
        around the corner there was to many people around her bed. I thought
        to my self not again I couldn't take another night like last night. I
        started to pray as I walked closer to her bed where there was
        doctors, nurses, respiratory people, they where all working are
        little girl again, I just started to cry and pray. I asked God to do
        what was right for her not for me. If it were better for her to go
        and be with him then I would find a way to deal with that but if it
        was not her time then let her live. No matter what I just kept asking
        him to stop her pain. I looked at the clock and she had been down for
        12 min this time, they could not get the new vent tube in this time
        and every one was looking like this was it, it was over and we had
        lost her. Then they tried one more time with a stylist no matter what
        it would do to her voice box. I didn't care what it took as long as
        she was still with me, it went in and she was breathing again but on
        a vet and 100% o2.  From there we had some ups and downs but none
        like that, she went from the vent to the Cpap, back to the vent. Then
        one day she was doing great and we where going to be moved up to the
        step up part of the NICU (that is where babies stay and grow so they
        can go home)
        they moved her and 20 min later she started to breath really bad and
        they didn't know what was wrong with her. Again we where moved back.
        She wouldn't keep her sats up over the high 70's. This was a
        Thursday, this went on like this till Monday, and they kept telling
        us if it didn't get any better we would have to again go back on the
        vent. I was so worried if that happened she would never get off it. I
        again prayed like I never prayed. I asked God to take me and let
        live, I asked him to stop her pain no matter if that meant I would
        lose her. I just didn't want to see her hurt any more. Then Monday
        morning they had to do it, again back on the vent but this time the
        tube would not go in. after some time the Doc did get it in. well
        Emma didn't want the tube in and about 2 hours later she pulled it
        out and back on the nasal cannula she went. What was happening was
        she would stop breathing for a short time and shot off her air way.
        They then called an ENT Doc and he said I feel the best thing for
        Emma is a trach. So the next day she went off to get one. WOW what a
        different baby she is today. After 110 days in the NICU we got to
        take are baby home.

        She has been back to the hospital a few times now and we will be
        taking her home this time on a cpap but that is ok as long as we have
        her with us. She eats most of her food by mouth but when she don't we
        use her feeding tube

        after all this she is now 4 lb.8ozs and she is almost 5 months old. A
        very happy baby. I thank God every night for giving me one more day
        with her


        sorry its so long but i just needed to write , hope no one minds
        God bless

        Donna Mom to Emma Jean former  26 weeker 15 1/2 oz at birth. now
        almost 5 months and 4lb8oz




        Community email addresses:
          Post message: Tracheostomy_infants@onelist.com
          Subscribe:    Tracheostomy_infants-subscribe@onelist.com
          Unsubscribe:  Tracheostomy_infants-unsubscribe@onelist.com
          List owner:   Tracheostomy_infants-owner@onelist.com

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      • bhijazi@sympatico.ca
        ... I too was moved by it my little boy is going through everything posted by Donna we had heart meds gave to Junior 10 times now I ve also asked god to take
        Message 3 of 5 , Feb 1, 2004
          Donna,
          Thank you for posting your message. I was very moved  when reading what you and your family have been through. Emma sounds like such a fighter and I can't wait to hear what God does in her life. I was reminded while reading her story of the times when my husband and I stood helplessly in the NICU, desperatetly crying , on our knees praying for our little boy while the dr's were working to get him breathing again. We lived hours during those endless minutes. Like you, I also prayed that if it was not God's will for Joseph to live, to please just give me the strength to accept His will.  
           
          Today, I am happy to say that Joseph is still with us and 5 months old. He still has many issues and frequent infections, but he is getting stronger and may be finally coming home in a few  weeks on a home vent.
           
          God bless
           
          Nathalie
           



          -----Original Message-----
          From: missbrady617
          Sent: Jan 31, 2004 7:56 PM
          To: Tracheostomy_infants@yahoogroups.com
          Subject: [Tracheostomy_infants] might have posted before but

          My name is Donna and on 9-6-03 I had a baby, Emma Jean, she was 15
          1/2 ozs. At birth, she was 26 weeks and 6 days, the delivery was a
          cesarean section because I had preclampsia and reverse end-diastolic
          flow (meaning the baby was not getting the blood she needed to grow)
          she was born at 21:43. At delivery she was active and I did get to
          hear her make 2 tinny cries before they took her and tubed her, she
          went right to the NICU where she stayed 110 days before we could take
          her home.

          We had a very long road ahead of us,
          we have had or still have respiratory distress, apnea-bradycardia,
          patent ductus arteriosus, thrombocytopenia, hyperbilirubinemia of
          prematurity, mild acute renal failure, and as with most baby's born
          before there time yes she has severe BPD, gastro esophageal reflux,
          poor growth because of the steroids she is been on to help her breath
          better. Oh yes I almost for got the ROP but that is getting better on
          its own.

          We have been on a ventilator, a oscillator and a jet ventilator nasal
          CPAP, nasal cannula back to the ventilator, this started from day one
          till they said the words to us that we didn't want to hear a
          tracheotomy. On 11-27-03 we went to surgery and they did her
          tracheotomy and a partial nissen and G-tube.

          Ok enough about what the Doc's say is or was wrong with her, here is
          some of what we had to deal with in are stay in the NICU. It was long
          and hard to deal with. The days and nights just all started to become
          one long day. Little Emma was so tinny they wouldn't let us touch her
          at all. We would go to sit with her feeling there was nothing we
          could do for her to make her feel better. She was just so tinny and
          sick. No one thought she would make it more then 24 hours, her 2nd
          day of life I was awaken by a Doc in my room telling me the baby
          stopped breathing and was dead for 20 minuets but they got her back.
          Now we had to worry about a brain bleed. But thank God she never had
          one. Time and time again she would stop breathing and we would worry
          we would lose her. One night when we went to see her at 8 pm there
          was a mix up in cleaning out her air way she stopped breathing and
          her heart stopped also we where there to see are tinny little angle
          die yet one more time. They had to give her meds to get her heart
          started again and they had to re-tube her. Dad stayed with her most
          of the night, holding her hand trying to make her feel better, the
          next day we went back in the morning to see her and she was doing
          great for Emma. Then later that night we went to get something to eat
          and then back to see Emma at 8pm, but that night when we walked
          around the corner there was to many people around her bed. I thought
          to my self not again I couldn't take another night like last night. I
          started to pray as I walked closer to her bed where there was
          doctors, nurses, respiratory people, they where all working are
          little girl again, I just started to cry and pray. I asked God to do
          what was right for her not for me. If it were better for her to go
          and be with him then I would find a way to deal with that but if it
          was not her time then let her live. No matter what I just kept asking
          him to stop her pain. I looked at the clock and she had been down for
          12 min this time, they could not get the new vent tube in this time
          and every one was looking like this was it, it was over and we had
          lost her. Then they tried one more time with a stylist no matter what
          it would do to her voice box. I didn't care what it took as long as
          she was still with me, it went in and she was breathing again but on
          a vet and 100% o2.  From there we had some ups and downs but none
          like that, she went from the vent to the Cpap, back to the vent. Then
          one day she was doing great and we where going to be moved up to the
          step up part of the NICU (that is where babies stay and grow so they
          can go home)
          they moved her and 20 min later she started to breath really bad and
          they didn't know what was wrong with her. Again we where moved back.
          She wouldn't keep her sats up over the high 70's. This was a
          Thursday, this went on like this till Monday, and they kept telling
          us if it didn't get any better we would have to again go back on the
          vent. I was so worried if that happened she would never get off it. I
          again prayed like I never prayed. I asked God to take me and let
          live, I asked him to stop her pain no matter if that meant I would
          lose her. I just didn't want to see her hurt any more. Then Monday
          morning they had to do it, again back on the vent but this time the
          tube would not go in. after some time the Doc did get it in. well
          Emma didn't want the tube in and about 2 hours later she pulled it
          out and back on the nasal cannula she went. What was happening was
          she would stop breathing for a short time and shot off her air way.
          They then called an ENT Doc and he said I feel the best thing for
          Emma is a trach. So the next day she went off to get one. WOW what a
          different baby she is today. After 110 days in the NICU we got to
          take are baby home.

          She has been back to the hospital a few times now and we will be
          taking her home this time on a cpap but that is ok as long as we have
          her with us. She eats most of her food by mouth but when she don't we
          use her feeding tube

          after all this she is now 4 lb.8ozs and she is almost 5 months old. A
          very happy baby. I thank God every night for giving me one more day
          with her


          sorry its so long but i just needed to write , hope no one minds
          God bless

          Donna Mom to Emma Jean former  26 weeker 15 1/2 oz at birth. now
          almost 5 months and 4lb8oz




          Community email addresses:
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            Subscribe:    Tracheostomy_infants-subscribe@onelist.com
            Unsubscribe:  Tracheostomy_infants-unsubscribe@onelist.com
            List owner:   Tracheostomy_infants-owner@onelist.com

          Shortcut URL to this page:
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          ADVERTISEMENT
          click here


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        • nathaliewisneski
          ... Thanks for writing. This site has been a blessing to me. As you know, when your baby is born very ill you feel so alone, I remember leaving the NICU
          Message 4 of 5 , Feb 3, 2004
            --- In Tracheostomy_infants@yahoogroups.com, <bhijazi@s...> wrote:
            > Bridget,

            Thanks for writing. This site has been a blessing to me. As you know,
            when your baby is born very ill you feel so alone, I remember leaving
            the NICU everyday and passing families with their new babies and
            feeling so bitter and angry. For many months I hated seeing pregnant
            women, and it is still hard at times. Only people who have been where
            we are can truly understand the joys and sorrows of having a child
            with special needs. I am glad we can share and hopefully encourage
            each other, unfortunatley, I have found ( atleast where I live) there
            are no support groups for parents of tached children.

            Nathalie





            > > > > Nathalie
            >
            > I too was moved by it my little boy is going through everything
            posted by Donna we had heart meds gave to Junior 10 times now I've
            also asked god to take him if that what he want but so far a over 100
            arrest later Junior still with us he stil on vent never been off only
            for 1 time for 3 hours they tried CPap but CO2 hit over 100 and back
            he went
            >
            > I've lost count the timesthe doctor told us to let him go that god
            choice ont ours
            >
            > we are getting a trach this week but were still told this is only
            for comfort and Junior lungs will still get no better and not sure he
            will make his first birthday well he now just over 7 months and
            still with us so I have hope of proving the doctor wrong
            >
            > Thankyou
            >
            > Bridget
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