Lindsey,
I came across this by accident and started to read what you just wrote and was totally stunned!! My son went thru the same thing! I know exactly how you feel! My son Brady is now 4 years old, he was diagnosed when I was 7 months pregnant-- what a terrible time & thing to find out!! We knew that he had the blocked bowel which is common in 15 % of babies with CF. I delivered by C-section 2 hours from our home so he would have the best care, we would of been in trouble if I would of delivered in our area with this problem! He had surgery when he was 6 hours old, he was in surgery for 4 hours. He came out with a ileostomy (for feeding) and a stoma bag (for his stool) It looked terrible, I hated it because he could not eat and I was planning on breast feeding. One advantage he had was that I had gestational diabetes when I was pregnant which made him a large baby-- 9 lbs 10 oz, he needed that since he did not thrive and lost alot of weight. After 2 months in the hospital and not thriving they decided the best thing to do was reconnect his bowels, at which time they also put a med port in his upper left hand chest. He was in the hospital for 77 LONG days before ever coming home. He had many challenges while there, he did get the psedomonus (I know I did not spell that right) while in the hospital at 2 months old. Also after they reconnected him he went thru major shock and had a heart rate of 230, was really red, swollen, tubes in his nose, iv, needles in his head, ankles, arms, hands, anywhere you could think of, on a respirator, looked like he was in sooooo much pain. He would cry and you couldn't hear him because of the respirator tube in his throat. They had him ties down so he wouldn't rip anything out, we just about lost him! We know now he is quite the little fighter with quite the personality. You will find that all your little girl goes thru will make her quite a strong person with such a strong personality. We always say our Brady is a 30 year old trapped in a 4 year olds body. He is doing well right now, he has been in the hosptial a total of 7 or so times sinch birth. He has had a lot of problems with his bowels, he can't eat peanuts, corn, or popcorm or he gets bowel blockages and then we have mahor problems. He has gone all week without a bowel movement and he screams in pain, throws up, we have to do 4 enemas a day, 3 laxatives a day 2 times a day, I do not wish it on anyone. You may keep that in mind since your little girl had the blockage as well. You may want to have her avoid those foods. It almost seems like a lifetime ago, those 4 years ago, but I know exactly where you are coming from!! I can remember him sucking on his pacifier so hard because he was so hungry and he couldn't eat! It tears you up inside. Just hang in there and believe it will get better! I know it is difficult to be ther all the time at the hospital, because that is where you want to be, but do take a break sometimes. I had 2 other kids a home at that time over 2 hours away, I lived at the hospital while my husband had to work and take care of the other kids that had school, etc., I feel so sorry for you because you feel like you are the only one that has gone thru this and you can't figure out why your little baby has to go thru all this suffering... I will keep you in our prayers and hope she will be able to come home soon! Feel free to respond back!!
Angie
Mom to Brittany (step-daughter) 13 yrs old- no cf,
Tyler- 11 -no cf,
Brady - 4 with cf,
Taylor 2 with Chromosome 9 q 21.2 q22.2 deletion
