New baby with CF...

[ErinsMommy]

Hello everyone, my name is Lindsay and I am new to this forum.
My daughter, Erin, was born June 19th... she is almost a month old and she's been in the hospital since she was born. She had a blocked bowel (meconium ileus) and needed surgery the day after she was born. She only weighed 5lbs 1oz and everything has been a complete rollercoaster ride ever since. It seems like she'll start doing good and then she'll just take a turn for the worst. It's sooooo stressful and I honestly feel like I'm getting weaker and weaker every day. I'm trying to stay strong for her but how long can a person keep their chin up when the person they love most in the whole world is going through such hell?? Erin hasn't been diagnosed with having cystic fibrosis just yet but the doctors are 97% sure that it's what she has. Both her father and I found out that we are carriers of the CF gene which only gives Erin 25% chance of having it, but on top of that she's had the bowel obstruction, the digestive issues, the small weight problem, the no weight gain, the enzymes, etc...
I'm sure that there are mothers... and fathers here that have gone through this... or something similar to it with their child. I am begging for help. I just need somebody to talk to that for once... knows what I'm going through. I can talk to friends, family, doctors, nurses... sure, that's fine. But will any of them <i>really</i> understand what I'm going through?? I doubt it. I need somebody that does. Erin was supposed to come home from the hospital yesterday but... in a matter of 24 hours, she lost weight... (enough weight that it scared the doctors into making her stay) and she also was putting out more than she was taking in. (she has an ileostomy) and she became dehydrated. They now have an IV in her head giving her TPN and my daughter misses her bottle soooo bad. I think one of the hardest things I've ever done in my life is watching my little girl cry, knowing exactly what she wants and what I can do to make her feel better (giving her her bottle) and then having somebody tell me that I can't do it because it could be harmful to her. <img src="i/expressions/face-icon-small-mad.gif" border="0">
Now they're telling me that I can't take her home until they give her the surgery and "put her back together". That's fine with me. I have all the time in the world to wait for my baby to get better. I would stay in that hospital for a year with her if that's what it took for her to get better. But I desperately want them to feed her because she just screams and screams and all that she wants... is her bottle. Please somebody give me some words of advice. I'm so stressed and I feel completely helpless!!

-Lindsay
(mother of Erin, a little over 3 weeks old, most likely with CF)

 

[Emily65Roses]

I'm not a parent, so I can't really help here. I only know what it's like to have CF myself, not have a child with it. Mind you, even though I may not be a perfectly understanding shoulder to cry on, I can still listen. And if you have questions, you have come to the right place.

But I have to ask... why won't they let you give her her bottle? I'm confused. If she's losing weight, how is that harmful to her? Do they think it'll back her up?
<img src="i/expressions/rose.gif" border="0">

 

[ErinsMommy]

I know... i was venting... and a lot of that probably didn't make any sense...
The reason they won't give her a bottle... is because by doing that they think that it's causing too much aggravation for her bowels and she's just passing it right through, and not absorbing any of it. Therefore... she isn't gaining any weight...
So by doing a TPN with the IV.... it's just kinda giving her nutrition, she's absorbing it better... and she'll gain weight this way. When they do the surgery to put her back together, she'll be able to have a bottle again and eat normally. She will still need to take enzymes to help her digest, but she's GREAT at taking them.
So... they're planning to do her surgery in about 2 weeks (if she can gain plenty of weight by then) and then after that, they'll give her her bottle back. But to me, 2 weeks of my baby wanting her bottle and being frusterated by not having it... is just so depressing.

 

[anonymous]

Lindsay,

It's very difficult to have a child in the hospital and so many uncertanties. Keep on top of the care your daughter is recieving and learn as much as you can from the hospital staff and try to contact your local clinic. In your few hours of spare time (I know there is not much) try to develop a network locally to help with education and support on CF. My daughter was born with a Meconium Ileus and spent the first few weeks in the hospital. Each CF patient varies in their health and how they do, so try not to compare your daughter Erin to other children (with CF or without). The good news is that my daughter turns 3 in September and all the hospital stays from when she was born are a distant memory. When she was recouperating from her surgery at day 10 she was allowed to have her first bottle, the following day her stomach couldn't handle the food they had to wait another 24 hours to reintroduce breast milk. It did break my heart to hear her cry for hours on end and the only thing she could have for the first 10 days was a pasifier with "sweet ease" on it. When I finally got to bring her home I had the nurse send some "sweet ease" home with me, just in case!!!!

Personally, I had a number of sleepless nights and it took me a while (at least a year) to accept the cards my daughter had been delt. I went through all the traditional stages of greif (anger, sadness, acceptance, etc) and you may to.

I wish Erin a speedy recovery so you can bring her home.

 

[anonymous]

Lindsey-
Sorry to hear about what your precious daughter is going through. My daughter (4 next week) and son (2 next month) both have cf. The first six months of both of their lives was VERY challenging. After that it honestly has been wonderful. Jack and Sophia have not been sick since - just the routine CF meds/respiratory treatments to keep them healthy.

Why cant she have her bottle???? Yes, they need to make sure she is gaining weight, but why cant they use a NG feeding tube (through the nose) instead of TPN to make sure she is getting enough milk. The TPN is very hard on the liver. My son was born with meconium illeus as well and was on TPN for his first ten days. He finally passed all of his meconium on day ten and avoided surgery (praise God!). We knew from his sisters cf diagnosis and ultrasounds showing bowel problems, that he most likely would have meconium illeus, so we were prepared.

Anyway, we were told when Jack was three months old that he has liver disease. Meconium illeus is a risk factor and TPN (I read) is another. Of course, my son HAD to be on TPN but nobody told me about the risk factors.

One thing I have learned these past four years, is that I need to learn as much as possible about what my kids are going through, by talking to other cf parents, what meds etc. and make suggestions to the doctors. You are on the right track by asking questions!!! The doctors are willing to listen and often are willing to cooperate because unfortunately a lot is a guessing game. You know and will know your daughter better than anyone, so your voice counts. If you want her to have bottles, find out why and get them to work with you if there is really no medical reason why.

Also both of my children had milk allergies and had to be on Nutramigen formula. We went through so much with my daughter during her first seven months or so. She couldn't keep anything down. A few weeks on Nutramigen, out went the feeding tube and she stopped vomiting. Not sure if your daughter is having reflux issues or not. Hopefully, Erin will come home soon!
Sharon

 

[anonymous]

Hi Lindsay,
I'm sorry you and Erin have to go through this and I hope she gets to come home soon. I am 32 weeks pregnant and I was informed after an amnio that my baby has CF. I'm due on September 5th but when I went to see the perinatologist on Friday they did a L2 u/s that revealed the baby's bowel has shown some dialation (1 centimeter) and they are a little concerned about it. They did the measurements and were shocked that he weighs 5 1/2 lbs already and I still have 8 weeks to go. I may have gestational diabetes, I failed the 1 hour glucose test and will take the 3 hour on Friday. This could be the cause for the baby being so large. The dr told me they may induce labor around 37 weeks to avoid any further bowel complications but they are going to monitor once a week via u/s to check the dialation.
I am scared to death...I go to a military hospital and they are not equiped to deal with this, if the baby needs surgery or special care he will be flown away to another hospital almost 2 hours from here and I will be stuck in the hospital unable to get to him. That worries me a lot. I want to delivery in Savannah where the perinatologist is located and a great hospital but my military dr doesn't see the "need" for it, which makes me feel really frustrated.
Is CF new to you or is this a disease you were familiar with prior to having your daughter? Does anyone else in your family have it? Was your baby born early? Did your u/s reveal any sort of bowel problems?
I have a step-son (11 years old) with CF so I do have the benefit (if you want to call it that) of knowing what the disease is all about. I also know that he is doing GREAT! He stays with us through the summer and is with us now until August. He and my son, whom is 12 are the best of friends and I promise you would never know he has CF if you met him. He is very athletic, energetic and really enjoys his life. He has lots of friends and we don't hold him back from anything. He has been relatively healthy most of his life, although he has spent a couple weeks in the hospital about once a year to get his "tune up". He has cultured psudomonias but it doesn't seem to have any effect on him (that I can see). He was born with meconium ileus and he had to have emergency surgery and that is how/when he was diagnosed with CF. But after the surgery the diagnosis and the acceptance it was just a matter of doing what needed to be done when it needed to be done.
I don't know how I will handle it if my baby has to be in the hospital for any length of time and I hope I am as strong as you have been. I'm thankful for the advantage of knowing about this prior to his birth, I can't imagine what it would be like if I didn't know right now. I would be expecting a perfectly healthy child just like my other two and everything would be thrown at me all at once. As if your not already an emotional wreck. But, 9 times out of 10 parents don't know until after the baby is born and sometimes they dont' know until the baby is well over a year old.
Please keep us updated on how Erin is doing, we are all pulling for her here. I think there is a lot to be learned from the people on this board, the parents of children with CF and especially the adults here who have lived with this disease and share their own personal first hand experiences.
Jen

 

[anonymous]

<b>Dear Sharon,</b>
The reason why my daughter can't have a bottle is because they think it was putting too must aggravation on her bowels, and she was passing it through her system too quickly and she was losing too much weight. Nothing was being absorbed. I had no idea about the TPN causing liver problems until you just told me and I am meeting with her surgeon today at 1:00pm so I will definitely be asking questions about that. Thankyou for informing me, because none of the doctors did. She is scheduled to have a pickline today for her nutrition... i was really hesitant about consenting for that... but the doctors told me that that would be the best thing for her and since I am not a doctor... and completely don't understand this disease, I go with whatever they tell me.
I have a question for you. You say that you have 2 children with cystic fibrosis... before I had Erin... I wanted a big family. I wanted a minimum of four children. Now, I've changed my mind. I still want more, and I could deal with the whole cystic fibrosis issue. I love Erin more than anybody in the world... I have love for her that I didn't even know I was capable of having, and I know that I would feel the same way with my other children. I'm sure that you really had to weigh out the pros and cons of having another child if you knew that one could end up with cystic fibrosis too. What helped you make your decision??

<b>Dear Jen,</b>
To answer your question did I know about this during my pregnancy? Yes, I did. Back in February, the doctors saw in an ultrasound that Erin's bowels looked brighter and it looked like she may possibly have CF. Her father and I got tested to see if we carried the gene and it turned out... we both do. That gave Erin a 25% chance of having the disease. No, there is no family history of cystic fibrosis which is why we're so suprised that Erin probably has it. Yes, they took me early. They induced me at my 37th week because it looked like Erin's bowel had more obstruction in the womb and they wanted to deliver her before it caused a problem for her. I understand what you're going through with the hospital issue. I was actually transfered from one hospital to another (before I had her) that way... I could be right where she was because she <i>did</i> need the surgery. It blows my mind that your hospital and your doctors are not cooperating with you and they dont see the need of you being int he same hospital with your son. I can't imagine what you're going through and I'm hoping that your son will be born fine and not have to be transfered to another hospital. Thankyou so much for your concern with my little angel. I wish you the best of luck with yours.

-Lindsay

 

[anonymous]

Lindsay,
Was there ever any mention of a c-section? No one has discussed delivery and I was hoping for a vaginal birth, I was just curious if anyone talked with you about it?
Was the baby's bowel dialating in the womb? I was curious at what point do they consider induction because of bowel dialation.
One more question ;-)
How many or how often did they do an u/s to check on the condition or status of the obstruction?
Jen

 

[ErinsMommy]

Jen,

There was mention of a c-section but the only reason is because I wasn't dialating as quickly in the beginning as they thought that I should have. I had thought that maybe a c-section would be better because Erin wouldn't have to work hard at being born and I thought that would be better for her incase she needed surgery but they told me that it would actually be better to have a vaginal birth because it would make her stronger and as she came out the canal, it would push a lot of the fluid out of her lungs for her whereas in a c-section she would have to work extra hard to breath and cry on her own.
I had an ultra sound once a week so they could check on Erin's bowels... they did dialate a little bit towards the time I had her but there was nothing to be concerned about. I'm not sure at what point they would go in and take the baby because of dialating bowels. The thing that happened with Erin is they got so dialated that it looked like she popped a hole. don't panic... because I did. But.. If that should happen... the baby will be fine. It won't hurt the baby at all but at that point... they would probably induce you if the baby was big enough and healthy enough to be born at that point.

 

[EmilysMom]

Lindsay,
Welcome to the boards! Down several posts is Emily65Roses. That's my Emily who was born with Meconium Ileus and had to be transferred from one hospital to Yale New Haven Newborn Intensive Care for surgery at two days of age. She was born by C-Section so after her surgery, she had respiratory trouble right away because of having all the fluid in her lungs that wasn't pushed out during a vaginal birth. We were told at that time that most babies born with MI would be diagnosed with Cystic Fibrosis and at six months of age, she was (after being sweat tested).
She has had her health problems over the years, but a few months ago, she turned 21. She will be a Junior in the Fall at Northeastern University in Boston, is nearly engaged to a wonderful young man who we adore and pretty much loves life!
She has her setbacks and needs IV antibiotics or short stays at the hospital for "tune-up", but mostly, she's holding herown right now.
Keep your chin up; come to the boards when you have a question or just want to vent; we are always here for each other; the CF adulkts are willing to answer questions and we parents are alwsy here for eahc other. <img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-cool.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ErinsMommy]

I honestly have to say that coming to these forums has been the best thing for me since my daughter has been born. Aside from sitting with her, holding her and just starring at my beautiful angel... this place has helped me sooooo much and I only joined at like midnight last night. It's so good to have people that you can relate to you and somebody that can say "I understand exactly what you're going through" and mean it. I honestly thought that with Erin having cystic fibrosis, I would never have that. And now I do and it's wonderful. Thankyou all so much!!

 

[anonymous]

Lindsey-
Please send me an e-mail at sdelorenzo@sbcglobal.net and I will be happy to answer your questions.

Jen-
I am not sure how the military system works, but why can't you deliver your baby at the hospital two hours away??? From what you describe (based on I went through) your sweet baby most likely is going to need special care after birth. Does your doctor have to approve your decision? Can you change doctors? It is really important for your baby to be delivered at the best hospital possible. I found that the children's hospital with the cf center was the best at doing enemas to remove the blockage. The radiologists had the most experience and that experience paid off and my son ended up not needing surgery (huge!). I waited a week to move Jack to the Children's hospital. What a mistake that was. It took the children's hospital radiologist one try to clear him, while it took the Women's hospital next door 5 unsuccessful attempts. That is because it is all up to the radiologists to try and clear them. Thank fully the head of radiology at Texas Children's was able to clear him. That is because he knew how to push the intestines as far as they would go, and other radiologists at the other hospital would not go that far. Also, Jack's intestines dilated to about 1cm at 32 weeks. Then it stayed the same until his birth.

Sharon

 

[JazzysMom]

I believe that there is always a Positive that comes with Negative. Sometimes the Positives are hard to see because we are overwhelmed from the Negatives. I am glad to see that you found a Positive in this forum!<img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/present.gif" border="0"><img src="i/expressions/rose.gif" border="0"><img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[anonymous]

Hi Lindsay,

I know excatly what you are feeling!! My daughter was born June 21st , 2004~ almost a year ago. We found out she had cf through amnio while i was pregnant, i had the u/s weekly and at a regular doctor appt. she was delivered by emergency c-section due to dilated bowls. When she was born we went through the MI surgery and my little girl didn't come home from the hospital for 3 weeks!! She had an Ileostomy for 5 months. Have they tested Erin for cf yet? Although it sounds like she may have a classic case, as my daughter did. I just wanted to respond and let you know my heart is with you. I know your head is spinning and not being able to help your precious baby is extremly hard. I went throgh every emotion possible. I honestly can't remember alot of what happened! I was in auto pilot mode! We did start giving her the enzymes right after her surgery which she had at 2 days of life. We mixed it with applesauce and then i would give her a bottle of my breastmilk. She would not breastfeed and i think she had a picc line for awhile. But once she started getting stronger and healing she would be able to drink my breastmilk from a bottle. I actually almost gave up the pumping thing sucked and then she was about 1 month old and she latched on!!! I just finished breastfeeding her 2 weeks ago. The ileostomy was so hard for me to deal with, it always leaked, i was changing it all the time! If you can i would suggest once your home getting a home nurse come in and help change it and weigh her to make sure she is gaining weight daily. It really helped alot -she eased us into the daily routine of cf meds/treatments on top of the ileostomy bag. She had a very hard year she was admitted into the hospital 2 x for iv antbotics due to congestion. She has cultured the psudonomas bug and was on TOBI antibotic for 2 months. But everyone told me that the first year is the hardest and it is SOOOOOOO TRUE!!!
I think i finally "got it" when Brinly turned 6 months old. Please take care of YOURSELF! You have to be strong, this too shall pass... a year later Brinly is walking talking and exploring her world like any other 1 year old.
oh yeah did she have the surgery yet and they are going to put her back in 2 weeks or are you going through the first surgery in 2 weeks?? Sorry if i read it wrong??
Blythe
mom to Brinly 1 w/cf and Birgess 3 1/2 yr w/o

 

[Emily65Roses]

"nearly engaged to a wonderful young man"

HEHEHEHEEE <img src="i/expressions/face-icon-small-tongue.gif" border="0">

 

[anonymous]

Emily... just out of curiosity... what do you mean by "nearly" engaged??

 

[Emily65Roses]

My mom wrote that, not me! lol We've been together almost two years now... and there's no ring yet, but he's opened a savings account for that specific purpose, and has so far, put some of his tax refund in it.

 

[anonymous]

Sharon-
I don't know why but for some reason my Primary Care Physician who alternates as my OB/GYN thinks he has everything under control. Everytime I bring up the subject of delivering at the better hospital he goes into this long spill about how babies born with CF are born just like all other kids and normally they don't show signs until well past...bla bla. However, I haven't had the chance to talk to him since I saw the Perinatologist last Friday because he has been on leave and doesn't come back until Jul 18. The Perinatologist said, "I strongly suggest you deliver here, or at any hospital that is equiped to handle surgery if need be." He also said he would highlight this suggestion on the report he will be forwarding to my doctor. So, I'm very optamistic that he will listen to the specialist and let me deliver there. I can't go on my own, I have to have a referral and so far they only give me referrals that approve me for one stinking visit, as if that is going to be enough.

Blythe-
How far along were you when they decided to do the c-section? How dilated were the bowels? It makes me so nervous hearing of the babies that had to stay at the hospital for an extended period. I hope this doesn't happen to my baby. Glad to hear how well your daughter is doing now. I am not looking forward to a rough first year. It almost makes me want to stay pregnant as long as I can because at least a I know he is safe.
Jen

 

[anonymous]

Jen,

I was 37 weeks when Brinly was delivered but i was measuring 41 weeks. It was quite scary not being able to leave the hospital to get my "packed bag"! I was admitted at 2:30pm and delivered Brinly at 3:45pm. Your doctor should be doing ultrasounds fairly often. Towards the end of my pregnancy it was every 2 weeks then every week. My regular OB saw the obstruction and sent me down right away to my perintogist to check it out. That is why they caught the upstruction so early. It is very important that the bowls do not rupture in utro. I hope this doesn't happen to you and your baby, but be prepared i really thought my pregancy was going ok. I would suggest having a pediatric surguen on call in case anything does come up. On the flip side...I had a vaginal birth with my first baby and the c-section was much easier! But i pushed for 3 hours with my first! and was in and out of surgery in 1 hour with the c-section!!
Blythe

 

[lovingBenandCambree]

Erin, I am new to this forum as well and am very excited about it. i am sorry to hear that your daughter is having so many problems right now. I am sure that your daughter is pretty strong to have already come this far with complications. It is amazing the fighting spirits that babies have when they are just so little. I had a daughter about 14 months ago. She was born 6 weeks premature and weighed only 4 pounds. She was a tiny little thing but the most precious and beautiful thing I had ever laid eyes on, as I am sure you feel the same about yours. And she was a fighter. I have CF. My daughter was tested but does not have it. Anyway, long story short, I had many complications with my pregnancy and we are both very lucky to be here. I know from your love and concern that your daughter will have such a wonderful life. This disease has helped me to be the person that I have become and I am proud of that. I feel as if though It has made me a stronger person than I ever would have been without it. If you ever have any questions please don't hesitate to ask. Good luck with everything and you are in my prayers.

Emilee with 2 e's