newborn daughter just diagnosed

[StayStrong]

I wanted to introduce myself since I will be stumbling around this forum a lot now. My newborn was diagnosed at birth with CF due to an obstruction in her intestines. This obstruction caused her to have a micro colon (it had never been used) and she is still in the NICU. The doctors are working to get her intestines moving and colon to grow, but she continues to get blockages which has led to a few setbacks and halting feedings. Her stool has finally been sent off to test for the needed enzymes, so we will begin that soon. She is 2.5 weeks old and we are anxious to get her home. The diagnosis was a tremendous blow to us both since we had no idea we were carriers and have no known family history of CF. We are thankful everyday that we have such a precious little girl, but are struggling with the reality of the CF diagnosis. I have been trilled to find this board and see so many stories from those of you who are living happy lives with CF and hope to utilize you as resources in the future. In the meantime, I just wanted to say hi and give you some insight into our current situation. <br>

 

[StayStrong]

I wanted to introduce myself since I will be stumbling around this forum a lot now. My newborn was diagnosed at birth with CF due to an obstruction in her intestines. This obstruction caused her to have a micro colon (it had never been used) and she is still in the NICU. The doctors are working to get her intestines moving and colon to grow, but she continues to get blockages which has led to a few setbacks and halting feedings. Her stool has finally been sent off to test for the needed enzymes, so we will begin that soon. She is 2.5 weeks old and we are anxious to get her home. The diagnosis was a tremendous blow to us both since we had no idea we were carriers and have no known family history of CF. We are thankful everyday that we have such a precious little girl, but are struggling with the reality of the CF diagnosis. I have been trilled to find this board and see so many stories from those of you who are living happy lives with CF and hope to utilize you as resources in the future. In the meantime, I just wanted to say hi and give you some insight into our current situation. <br>

 

[StayStrong]

I wanted to introduce myself since I will be stumbling around this forum a lot now. My newborn was diagnosed at birth with CF due to an obstruction in her intestines. This obstruction caused her to have a micro colon (it had never been used) and she is still in the NICU. The doctors are working to get her intestines moving and colon to grow, but she continues to get blockages which has led to a few setbacks and halting feedings. Her stool has finally been sent off to test for the needed enzymes, so we will begin that soon. She is 2.5 weeks old and we are anxious to get her home. The diagnosis was a tremendous blow to us both since we had no idea we were carriers and have no known family history of CF. We are thankful everyday that we have such a precious little girl, but are struggling with the reality of the CF diagnosis. I have been trilled to find this board and see so many stories from those of you who are living happy lives with CF and hope to utilize you as resources in the future. In the meantime, I just wanted to say hi and give you some insight into our current situation. <br>

 

[Printer]

I am sorry to hear that your daughter (Darling Daughter = DD) was dx with CF but glad that she was dx at such an early age. There is a thread here (see FORUM/ADULT), called cfers over 40. Take a few minutes with your husband and read through it.

I won't lie to you, this is not a good dx but it is NOT a death sentence either.

Good luck,
Bill

 

[Printer]

I am sorry to hear that your daughter (Darling Daughter = DD) was dx with CF but glad that she was dx at such an early age. There is a thread here (see FORUM/ADULT), called cfers over 40. Take a few minutes with your husband and read through it.

I won't lie to you, this is not a good dx but it is NOT a death sentence either.

Good luck,
Bill

 

[Printer]

I am sorry to hear that your daughter (Darling Daughter = DD) was dx with CF but glad that she was dx at such an early age. There is a thread here (see FORUM/ADULT), called cfers over 40. Take a few minutes with your husband and read through it.

I won't lie to you, this is not a good dx but it is NOT a death sentence either.

Good luck,
Bill

 

[Ratatosk]

We had a similar experience over 8 years ago when DS was born with an obstruction. No family history, complete shock. He spent 6 weeks in the NICU/Hospital. During that time, we learned how to do chest physiotherapy to keep his lungs clear, how to give him enzymes with his bottles, oral meds...

Just take it one step at a time. Get into a routine. I know it's all so very overwhelming, but she's still a normal little girl who just needs a few extra things to keep her happy and healthy. Today our son is a busy 8 year old, goes to elementary school, particpates in different activities -- gymnastics, skating, tennis...

 

[Ratatosk]

We had a similar experience over 8 years ago when DS was born with an obstruction. No family history, complete shock. He spent 6 weeks in the NICU/Hospital. During that time, we learned how to do chest physiotherapy to keep his lungs clear, how to give him enzymes with his bottles, oral meds...

Just take it one step at a time. Get into a routine. I know it's all so very overwhelming, but she's still a normal little girl who just needs a few extra things to keep her happy and healthy. Today our son is a busy 8 year old, goes to elementary school, particpates in different activities -- gymnastics, skating, tennis...

 

[Ratatosk]

We had a similar experience over 8 years ago when DS was born with an obstruction. No family history, complete shock. He spent 6 weeks in the NICU/Hospital. During that time, we learned how to do chest physiotherapy to keep his lungs clear, how to give him enzymes with his bottles, oral meds...

Just take it one step at a time. Get into a routine. I know it's all so very overwhelming, but she's still a normal little girl who just needs a few extra things to keep her happy and healthy. Today our son is a busy 8 year old, goes to elementary school, particpates in different activities -- gymnastics, skating, tennis...

 

[StayStrong]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>

We had a similar experience over 8 years ago when DS was born with an obstruction. No family history, complete shock. He spent 6 weeks in the NICU/Hospital. During that time, we learned how to do chest physiotherapy to keep his lungs clear, how to give him enzymes with his bottles, oral meds...



Just take it one step at a time. Get into a routine. I know it's all so very overwhelming, but she's still a normal little girl who just needs a few extra things to keep her happy and healthy. Today our son is a busy 8 year old, goes to elementary school, particpates in different activities -- gymnastics, skating, tennis...</end quote><br><br>Thank you for sharing, that is wonderful to hear! Do you by any chance
remember what they did to prevent further obstructions? Our doctors are
having trouble keeping her intestines clear long enough to get them
working properly. <br>

 

[StayStrong]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>

We had a similar experience over 8 years ago when DS was born with an obstruction. No family history, complete shock. He spent 6 weeks in the NICU/Hospital. During that time, we learned how to do chest physiotherapy to keep his lungs clear, how to give him enzymes with his bottles, oral meds...



Just take it one step at a time. Get into a routine. I know it's all so very overwhelming, but she's still a normal little girl who just needs a few extra things to keep her happy and healthy. Today our son is a busy 8 year old, goes to elementary school, particpates in different activities -- gymnastics, skating, tennis...</end quote><br><br>Thank you for sharing, that is wonderful to hear! Do you by any chance
remember what they did to prevent further obstructions? Our doctors are
having trouble keeping her intestines clear long enough to get them
working properly. <br>

 

[StayStrong]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>

We had a similar experience over 8 years ago when DS was born with an obstruction. No family history, complete shock. He spent 6 weeks in the NICU/Hospital. During that time, we learned how to do chest physiotherapy to keep his lungs clear, how to give him enzymes with his bottles, oral meds...



Just take it one step at a time. Get into a routine. I know it's all so very overwhelming, but she's still a normal little girl who just needs a few extra things to keep her happy and healthy. Today our son is a busy 8 year old, goes to elementary school, particpates in different activities -- gymnastics, skating, tennis...</end quote><br><br>Thank you for sharing, that is wonderful to hear! Do you by any chance
remember what they did to prevent further obstructions? Our doctors are
having trouble keeping her intestines clear long enough to get them
working properly. <br>

 

[peter]

Just be alert to medical decisions you don't understand. It is easy to assume or presume the medical staff knows what it is doing. Many on this site know otherwise (some the hard way). If they can't fully explain with good reasoning, maybe you also need to locate the nearest center, make contact and get the center's input. I'm not suggesting leaving that NICU, it may be very qualified, just broaden your knowledge base and resources. This site is the best place to ask and pursue. You are home here, this is your extended family. Proactive can not be overstated when helping your beautiful DD. Don't let your lack of familiarity intimidate your questions. All professionals know people like you and should not take your questioning personally, but be personal with you and give extra effort. I'm a practitioner and never think questions are for someone else to answer unless of course it is another discipline's domain.

 

[peter]

Just be alert to medical decisions you don't understand. It is easy to assume or presume the medical staff knows what it is doing. Many on this site know otherwise (some the hard way). If they can't fully explain with good reasoning, maybe you also need to locate the nearest center, make contact and get the center's input. I'm not suggesting leaving that NICU, it may be very qualified, just broaden your knowledge base and resources. This site is the best place to ask and pursue. You are home here, this is your extended family. Proactive can not be overstated when helping your beautiful DD. Don't let your lack of familiarity intimidate your questions. All professionals know people like you and should not take your questioning personally, but be personal with you and give extra effort. I'm a practitioner and never think questions are for someone else to answer unless of course it is another discipline's domain.

 

[peter]

Just be alert to medical decisions you don't understand. It is easy to assume or presume the medical staff knows what it is doing. Many on this site know otherwise (some the hard way). If they can't fully explain with good reasoning, maybe you also need to locate the nearest center, make contact and get the center's input. I'm not suggesting leaving that NICU, it may be very qualified, just broaden your knowledge base and resources. This site is the best place to ask and pursue. You are home here, this is your extended family. Proactive can not be overstated when helping your beautiful DD. Don't let your lack of familiarity intimidate your questions. All professionals know people like you and should not take your questioning personally, but be personal with you and give extra effort. I'm a practitioner and never think questions are for someone else to answer unless of course it is another discipline's domain.

 

[Ratatosk]

They waited at least a week before they had us start up feeding him -- started with 10 cc of pedialyte and once they started trying formula, they made sure we used enzymes. He was on TPN (IV Nutritional feeds). We actually would've been home much sooner, once he started eating and gaining weight, but unfortunately, he got a couple of infections -- probably from his central line and had to be put on IV antibiotics. The surgeons did indicate that it might take awhile for his gi tract to get used to eating. And when we finally did get him home, he was still a bit of a spitter --- reflux.

I seem to recall a dietician coming in when he was 2-3 weeks old and taking a stool stool sample for a fecal fat test and his doctor kinda rolled his eyes and said, "we already KNEW he was pancreatic insufficient, so not sure what the point is"..

 

[Ratatosk]

They waited at least a week before they had us start up feeding him -- started with 10 cc of pedialyte and once they started trying formula, they made sure we used enzymes. He was on TPN (IV Nutritional feeds). We actually would've been home much sooner, once he started eating and gaining weight, but unfortunately, he got a couple of infections -- probably from his central line and had to be put on IV antibiotics. The surgeons did indicate that it might take awhile for his gi tract to get used to eating. And when we finally did get him home, he was still a bit of a spitter --- reflux.

I seem to recall a dietician coming in when he was 2-3 weeks old and taking a stool stool sample for a fecal fat test and his doctor kinda rolled his eyes and said, "we already KNEW he was pancreatic insufficient, so not sure what the point is"..

 

[Ratatosk]

They waited at least a week before they had us start up feeding him -- started with 10 cc of pedialyte and once they started trying formula, they made sure we used enzymes. He was on TPN (IV Nutritional feeds). We actually would've been home much sooner, once he started eating and gaining weight, but unfortunately, he got a couple of infections -- probably from his central line and had to be put on IV antibiotics. The surgeons did indicate that it might take awhile for his gi tract to get used to eating. And when we finally did get him home, he was still a bit of a spitter --- reflux.

I seem to recall a dietician coming in when he was 2-3 weeks old and taking a stool stool sample for a fecal fat test and his doctor kinda rolled his eyes and said, "we already KNEW he was pancreatic insufficient, so not sure what the point is"..

 

[Ratatosk]

Peter has a good point. Are you at a CF Center? When DS was started on feedings, the nurses on the NICU floor called up to the CF floor for advice on how to give him enzymes. Things went much more smoothly for us when our CF doctor took over his care.

 

[Ratatosk]

Peter has a good point. Are you at a CF Center? When DS was started on feedings, the nurses on the NICU floor called up to the CF floor for advice on how to give him enzymes. Things went much more smoothly for us when our CF doctor took over his care.