<P><FONT color=#000000 face=Verdana>Hi everyone,</FONT></P>
<P><FONT color=#000000 face=Verdana> </FONT></P>
<P><FONT color=#000000 face=Verdana>Well after nearly 6 months, I have worked up the courage to join the forums. Sorry but this is going to be an essay- it is something I have been struggling to put into words for a long time and I just wanted to share it. Here is my story</FONT></P>
<P><FONT color=#000000 face=Verdana> </FONT></P>
<P><FONT color=#000000 face=Verdana>My son was born at 36weeks. I had a completely normal pregnancy and even though he was premature, the OB at the time said he was completely healthy. For the next 20 odd hours though, he refused to breastfeed and didn't poop. After a paed examined him, it was discovered that he had some form of obstruction. </FONT></P>
<P><FONT color=#000000 face=Verdana>Fast forward 2 days and 2 different hospitals later, he had surgery for meconium illeus and an ielsotomy done as well as the removal of several centimetres of bowel. We then got the news about CF. As you would understand and know, our whole world came crashing down around us. We were now 3 hours from home with a baby in NICU and just didn't know what to do or think. I already knew a bit about CF as I am a teacher and had learnt about it in my training. I think this made things worse though! We spent 38 days in hospital with him. My husband and I lived in hotels and spent as much time as humanly possible with our little boy- we were (and still are!) completely besotted with him.</FONT></P>
<P><FONT color=#000000 face=Verdana> </FONT></P>
<P><FONT color=#000000 face=Verdana>We then went home with all the issues that surround ostomy bags- leaking, not sticking etc. It was horrible. We also had to explain everything to our families- my husband has a large family and we have 9 nieces and nephews who are all healthy and so for our families seeing our son 'sick' was hard. We spend so much time and energy reassuring them that I think we forgot ourselves a bit too. </FONT></P>
<P><FONT color=#000000 face=Verdana>Our son was classified failure to thrive and was only 200gms above his birth weight at just under 2 months old. I then had to make the heartbreaking decision to stop breastfeeding and go down the Pepti Jnr road which had its own issues.</FONT></P>
<P><FONT color=#000000 face=Verdana>After being home for only 2 weeks, our son went back into hospital as his osotmy stopped functioning due to a mechanical obstruction. We went from our local small hospital by helicopter to a hospital in Sydney- we went 36 hours without sleep and I watched him stop breathing and almost leave us in the ER. His surgical team and CF clinic were wonderful and operated on him 2 weeks later and reversed his ostomy and removed more bowel. They came to see us every day (even weekends) and were amazing. We managed to stay at Ronald McDonald House for most of our stay this time which meant the world to us. After another 42 days in hospital, we went home with our gorgeous little man, no ostomy (yay!) and CF under control.</FONT></P>
<P><FONT color=#000000 face=Verdana> </FONT></P>
<P><FONT color=#000000 face=Verdana>I thank God everyday for our wonderful team of doctors who answer all my silly questions, take my frantic phone calls and are just supportive and wonderful. We are very fortunate so far that our son has very healthy lungs right now and completely normal lung function even with all the intubation during hospital. Current meds are enzymes, VitABDECK, Vit D3, salt, losec(for reflux) and Flucoxicillian. We were able to move on from Pepti Jnr to a regular formula which was wonderful and he is now eating solids and is ravenously hungry!</FONT></P>
<P><FONT color=#000000 face=Verdana>I guess my struggle now is paranoia about another hospitalisation as it is winter here and cold and flu season. I also feel quite isolated at times as I feel I can't do a lot of the things other new mums do like mother's groups and playgroups due to infection risk. My son is an absolute joy and is the light of my life but I do get days where I feel incredibly sad that he is going to have to live with this for the rest of his life.</FONT></P>
<P><FONT color=#000000 face=Verdana> </FONT></P>
<P><FONT color=#000000 face=Verdana>If you read all of this, thank you! I look forward to chatting to you all- people who understand what it feels like to care for someone with CF</FONT></P>
<P><FONT color=#000000 face=Verdana>xx</FONT></P>
<P><FONT color=#000000 face=Verdana> </FONT></P>
<P><FONT color=#000000 face=Verdana> </FONT></P>
<P style="MARGIN: 0cm 0cm 10pt" class=MsoNormal><?xml:namespace prefix = o ns = "urn:schemas-microsoft-com<img src="i/expressions/face-icon-small-blush.gif" border="0">ffice<img src="i/expressions/face-icon-small-blush.gif" border="0">ffice" /><o<img src="i/expressions/face-icon-small-tongue.gif" border="0">><FONT color=#000000 size=3 face=Calibri> </FONT></o<img src="i/expressions/face-icon-small-tongue.gif" border="0">></P>
<P><FONT color=#000000 face=Verdana> </FONT></P>
<P><FONT color=#000000 face=Verdana>Well after nearly 6 months, I have worked up the courage to join the forums. Sorry but this is going to be an essay- it is something I have been struggling to put into words for a long time and I just wanted to share it. Here is my story</FONT></P>
<P><FONT color=#000000 face=Verdana> </FONT></P>
<P><FONT color=#000000 face=Verdana>My son was born at 36weeks. I had a completely normal pregnancy and even though he was premature, the OB at the time said he was completely healthy. For the next 20 odd hours though, he refused to breastfeed and didn't poop. After a paed examined him, it was discovered that he had some form of obstruction. </FONT></P>
<P><FONT color=#000000 face=Verdana>Fast forward 2 days and 2 different hospitals later, he had surgery for meconium illeus and an ielsotomy done as well as the removal of several centimetres of bowel. We then got the news about CF. As you would understand and know, our whole world came crashing down around us. We were now 3 hours from home with a baby in NICU and just didn't know what to do or think. I already knew a bit about CF as I am a teacher and had learnt about it in my training. I think this made things worse though! We spent 38 days in hospital with him. My husband and I lived in hotels and spent as much time as humanly possible with our little boy- we were (and still are!) completely besotted with him.</FONT></P>
<P><FONT color=#000000 face=Verdana> </FONT></P>
<P><FONT color=#000000 face=Verdana>We then went home with all the issues that surround ostomy bags- leaking, not sticking etc. It was horrible. We also had to explain everything to our families- my husband has a large family and we have 9 nieces and nephews who are all healthy and so for our families seeing our son 'sick' was hard. We spend so much time and energy reassuring them that I think we forgot ourselves a bit too. </FONT></P>
<P><FONT color=#000000 face=Verdana>Our son was classified failure to thrive and was only 200gms above his birth weight at just under 2 months old. I then had to make the heartbreaking decision to stop breastfeeding and go down the Pepti Jnr road which had its own issues.</FONT></P>
<P><FONT color=#000000 face=Verdana>After being home for only 2 weeks, our son went back into hospital as his osotmy stopped functioning due to a mechanical obstruction. We went from our local small hospital by helicopter to a hospital in Sydney- we went 36 hours without sleep and I watched him stop breathing and almost leave us in the ER. His surgical team and CF clinic were wonderful and operated on him 2 weeks later and reversed his ostomy and removed more bowel. They came to see us every day (even weekends) and were amazing. We managed to stay at Ronald McDonald House for most of our stay this time which meant the world to us. After another 42 days in hospital, we went home with our gorgeous little man, no ostomy (yay!) and CF under control.</FONT></P>
<P><FONT color=#000000 face=Verdana> </FONT></P>
<P><FONT color=#000000 face=Verdana>I thank God everyday for our wonderful team of doctors who answer all my silly questions, take my frantic phone calls and are just supportive and wonderful. We are very fortunate so far that our son has very healthy lungs right now and completely normal lung function even with all the intubation during hospital. Current meds are enzymes, VitABDECK, Vit D3, salt, losec(for reflux) and Flucoxicillian. We were able to move on from Pepti Jnr to a regular formula which was wonderful and he is now eating solids and is ravenously hungry!</FONT></P>
<P><FONT color=#000000 face=Verdana>I guess my struggle now is paranoia about another hospitalisation as it is winter here and cold and flu season. I also feel quite isolated at times as I feel I can't do a lot of the things other new mums do like mother's groups and playgroups due to infection risk. My son is an absolute joy and is the light of my life but I do get days where I feel incredibly sad that he is going to have to live with this for the rest of his life.</FONT></P>
<P><FONT color=#000000 face=Verdana> </FONT></P>
<P><FONT color=#000000 face=Verdana>If you read all of this, thank you! I look forward to chatting to you all- people who understand what it feels like to care for someone with CF</FONT></P>
<P><FONT color=#000000 face=Verdana>xx</FONT></P>
<P><FONT color=#000000 face=Verdana> </FONT></P>
<P><FONT color=#000000 face=Verdana> </FONT></P>
<P style="MARGIN: 0cm 0cm 10pt" class=MsoNormal><?xml:namespace prefix = o ns = "urn:schemas-microsoft-com<img src="i/expressions/face-icon-small-blush.gif" border="0">ffice<img src="i/expressions/face-icon-small-blush.gif" border="0">ffice" /><o<img src="i/expressions/face-icon-small-tongue.gif" border="0">><FONT color=#000000 size=3 face=Calibri> </FONT></o<img src="i/expressions/face-icon-small-tongue.gif" border="0">></P>