View Full Version : John's story


liljohnsmama
04-15-2004, 02:32 PM
Hello everyone, I am Heidi and this is my son John's story.
Well, after 2 miscarriages, my husband and I finally got pregnant and the pregnancy seemed to be sticking this time so we were sooo excited and happy.
I had a pretty easy pregnancy until I reached 36 weeks when I developed preeclampsia and had to have an emergency c section. Well, I REALLY wanted to breastfeed my son. I wanted to breastfeed more than anything and I knew how important that first hour after delivery was but he was taken from me and I could not feed him until I was off the mag sulfate that had me on to keep me from seizuring or something like that. When I finally did get a chance to try to feed him I just could not get him to latch on. Plus he was severely jaundice and had lost almost a pound at the hospital so the Dr.'s told me to pump my milk and feed him formula until his billirubin numbers went back down to normal so I did. He slept all the time for the first about 8 weeks and was and extremely small eater. 1/4 ounce was about his normal amount about every 2- 3hours. When I took him to his dr. they kept saying that was a very small amount but don't worry about it. (that would always leave me frustrated and confused. Like what does that mean???)
Well, he never really increased his eating and he absolutley would not latch on to the breast so I decided to pump for him exclusively. I had a nice pump and fortunately made extreme amounts of milk (40 + ounces a day). Unfortunately he would not eat it. He just would not eat! And he was spitting up all the time. Not the projectile vomiting (yet) but more than just a little spit. It got to a point where everytime I brought the bottle nipple to him he would just scream and push away. I took him back to his pediatrition and showed him what John was doing and his pediatrition said "wow, that is kind of odd. Try some new bottle and nipples and see if that helps". Can you believe that!!?? So I went and spent a ton of money on new bottles and nipples and nothing helped. So we went back to his Dr. and this time he put him on Nutrimigen saying he had a milk allergy. Well that did not help and he was just eating less and less and getting ever more fussy. Finally, when he was about 12 weeks old, on a Saturday he was refusing to eat anything and just screaming all day long and he was doing this weird arch like he was in pain so we rushed him into the ER. They examined him (the nurses there acted like we were nutz. They were so rude to us!) and the ER dr. tried to feed him. He sucked a small amount then screamed and pushed the bottle away. She said he probably had reflux that it wasn't a big deal (can you believe that!!??) and gave him Zantac to go home on. She also told me to switch him back to the breastmilk. I was so happy to be given the green light put him back on breastmilk tho. So we tried that. Did not help much tho. He still was refusing milk.
I had just never heard of a baby refusing to eat. People kept telling that he will eat if he is hungry, to try harder, to stop trying so hard. And so many family members would say "my child had reflux it wasn't that big of a deal". And they would treat me like it was my fault my son was having these problems which I had begun to believe. Maybe I was trying to hard or not trying enough. It was so depressing and frustrating. I just felt so unfit.. It was terrible! He was gaining less and less weight and was slipping farther and farther off the chart. Around 6 months (supposedly when things are supposed to be starting to get better.. Ha!) I was just exhausted from all the feeding problems and pumping and I decided to switched John to formula. That is when the projectile vomiting started. And it just got worse and worse. If I had thought it was from the formula I would have continued pumping for him but I just did not put 2 and 2 toghether. We brought him to his new pediatrition and she put him on Prilosec and scheduled him for and upper GI and small bowel. The test was awful. John screamed and fought. He hated being strapped down and refused to eat the barium. Altho the finally managed to get a small amount into thim. It was terrible. And of course he did not reflux at that time.
Shortly after that he got the flu and the vomiting and diarrhea was just unbelieveable! I can not believe so much diarrhea can come out of such a tiny little baby.. We had to take him to the ER for dehydration and they hooked him up to fluids.
So here we are now. He is one year old and about 19 lbs and still a power vomiter. : We are extremely careful about the way we feel little John. I offer him 2 ounces formula every few hours (altho he rarely drinks it all) and I offer him small amounts of food about an hour after his formula. We only put him in his high chair if he has an empty stomach as on a full stomach sitting in the high chair must put pressure on his little stomach and it makes him immediately power vomit. He still gags, chokes and coughs and unfortunately sometimes these things will make him vomit...
I just want to thank you so much for this website and for letting me tell my story. I did feel so alone not knowing anyone who had had a child with the kind of reflux my son has. I know my sons degree of reflux is not as serious as some and I am so thankful for that. I just don't know how many of you have handled going thru the difficult times you have. I want you to know that you and your families are all in my thoughts and Prayers. May there some day be a cure for this terrible and often times shrugged off disease...
Heidi and Little John
p.s. I am so sorry I made this so long. Thank you for taking the time to read.

trentsmom
04-15-2004, 03:06 PM
Welcome Heidi

Wow! You're son sounds just like mine.
I think I could write a recommendation book on every bottle and nipple on the market!! I've tried them all!
I too exclusively pumped and fed for the first 4 months using the Medela pump-in-style. Boy, that was hard work. Trent would not latch on either.
He still will not drink the bottle awake. I have to rock him to sleep, and then verrrrry slowly insert the bottle nipple, and he will usually suck about 4 oz. I do this 5 times a day to get 20oz in him. We took him off formula and put him on Pediasure at 9 months and that helped a lot. I have heard it doesn't help for all though. Trent is 1 year and 2 weeks, and he weighs 21 lbs and 10oz. At 9 months, he only weighed 16 lbs. So I am an advocate for the Pediasure as you can imagine.
I know what you have been through....we all do. Trent doesn't seem to vomit as much as your son, usually only twice a day, but we do have to be careful to hold him upright for a while after he eats. Trent also has oral aversions and will not eat solids unless he is heavily distracted. In fact, right now, he won't eat unless the garbage disposal is on :) ...wierd, I know. My mom lives in another state and doesn't believe reflux exist. She thinks I have just spoiled him to eating this way????? :evil:
Oh, well, I could go on, but I'm not.
Very glad you joined!

Amy

liljohnsmama
04-15-2004, 05:19 PM
Hi Amy, :D
Thanx so much for the reply and the warm welcome! Yes, pumping was hard work wasn't it!? I had the same pump as you. I swear by Medela PIS. I swear it worked better than the one I used at the hospital (but the hospital one wasn't a dual pump either..)
I never tried the sleep feedings. I wish I would have done that. That may have helped. I did notice he used to eat best when he was really sleepy and in that strange calm he gets before he falls to sleep.
I like your idea of the Pediasure. I think I am going to try switching him to the Pediasure instead of milk. He is pretty much refusing formula now (he eats about 11 oz a day now but he is eating more solids.And he seems to like yogurt. Thank GOD! .) maybe he will like the Pediasure better? Does it taste pretty good?
Thanx again for the warm welcome! I look forward to getting to know you more.
Heidi

Roni
04-15-2004, 06:35 PM
Yep, sounds pretty similar to what we lived...sorry you've had to go through it but hopefully finding us will give you some reassurance that you are not nuts, you are not to blame and you are a wonderful mother!

Those that think there is no such thing as reflux or that it's not a big deal are the ones that are nuts!

Janette
04-15-2004, 07:17 PM
Yes, Heidi, your story sound alot like what we've been through too. Just a word of caution regarding the Pediasure. We found it was too thick for Evan and also suspect that he has a milk allergy or intollerance, so it made him pretty sick.

trentsmom
04-15-2004, 09:30 PM
Hi Heidi.

The pediasure does taste really good. My 5 year old drinks it as well. To me it taste like a Slim Fast shake, but not as thick. It is a little thicker than formula, but not too much. I did have to widen the bottle nipples once I started using it. It comes in chocolate, strawberry, vanilla, banana, and orange. I use vanilla because it doesn't stain as bad as the others. It is a little expensive, but Walmart has a store brand called parents choice and it is much more economical.
I have heard some say their child couldn't tolerate it because of the extra calories, thickness, allergy...etc, but it did work for Trent, so I think it is definitely worth a try.
Trent is over a year old now, and I still sleep feed him. It works pretty good. During the day, I rock him to sleep every 3 hours with his pacifier, and just when he falls asleep, I take the pacifier out and put in the bottle and he just keeps sucking. You might could try it on your son when he takes a nap, or at night? I know it is probably not the best alternative, but when Trent finally started refusing all liquids, I had to do something. He will drink some awake out of a sippy cup, but it only averages to about 4 oz a day and I have noticed if he doesn't get at least 16 oz a day, he stays really constipated!
Good Luck with everything and we are all here to help. Some things have worked for some of us and not for others, but if you're like me, you will try just about anything!

Amy