Prayers for Ellie

[SunWorshiper_26]

Something in my heart has told me something is wrong for weeks now with Ellie. Her eating constantly always hungry and reflux symptoms. Over the last two and a half weeks she has battled constipation, mucus in her stool, crying while eating and projectile vomiting. I've brought her in to the ped with no luck. I've called the ped many times over the last two weeks and they make me feel crazy like oh yeah whatever all babies spit up. Today after feeding her for THREE hours, she would eat for a few spit up or vomit, eat again over and over crying out in pain until we were both so soaked in vomit that I stopped her eating and we took a bath together so we could wash off the milk and change clothes. I called the ped office crying and got an appt. She has lost nearly a pound and is now 7lbs 12oz. She is visibly thinner and more pale. She is sleepy and hungry.

Luckily the ped was able to see the whole event of trying to feed her she eats for a few stops cries pukes repeat. She was able to see that Ellie has a good latch and ***** well so it isn't that. The dr sent us for an emergency ultrasound at the hospital to check for pyloric stenosis. The ultrasound came back fine. This does not rule it out. If things get any worse the dr will send us to the ER to have her admitted for fluids calories and to see a pediatric GI dr. I had made an appointment for a GI dr over a month ago and first available appt wasn't until March 22 so we are still waiting to see that dr.

I am at this point having to wake her to feed her she is so sleepy. After eating she has to be watched closely because she will projectile vomit and choke every time. It's hard to see Ellie like this. Please keep her in your thoughts and prayers. We go back on Saturday for a weight check and to make plans on what to do next which will probably be an upper GI with barium and follow through.

[SunWorshiper_26]

I'm so glad Leila is doing better!!  The GERD is so frustrating!!!  

Unfortunately Ellie is still having trouble we are testing an at home method to treat the stenosis and if it doesn't work within the next two weeks she will be sedated for additional testing (MRI and such) and then will be scheduled for surgery. I am terrified that she will need surgery. A mommy never wants to see their baby suffer and to have surgery at such a young age, so very frightening. I pray that dealing with this at home will help enough to avoid surgery. I will keep you all posted. Thank you so much for asking, you are so thoughtful!

[Momma2MyAngel]

wow, so much going on for little Ellie :( I hope she is doing better. I havent been on this site in so long. Its great to read about all of ytou and see your updates. I hope Ellie is better and they've helped fixed this.

p.s. I am so happy to see grat poops from my little one too! Leila also has GER and shes been taking medicine every day, along with azitrhomicine and fluconazole because he thrush isnt going away. We've also started adding baby rice cereal to her formula and it really helps her keep her food down. Its amazing. She feels so much better not puking all day.

[SunWorshiper_26]

They are leaning toward a diagnosis of hirschsprung's disease

[SunWorshiper_26]

So we have to have diagnostic testing done. They are consulting with a pediatric surgeon for the testing. She probably will need surgery :( they aren't sure which of two abnormalities it is. We will have tests done next week and then go from there. 

[SunWorshiper_26]

Ellie has an appointment with the GI dr tomorrow. I insisted they see her sooner because it was not fair to let her suffer by delaying treatment. I'm anxious and very nervous to hear about the treatment plan. Praying it does not include surgery!

[SunWorshiper_26]

Never thought I'd be so happy to see good poops! Lol!!  Ellie is doing really well. Still BF did not eliminate what the dr originally told me to (soy, wheat, nuts, fish, berries, eggs, tomato and milk) I have eliminated milk but dont think that has made a difference I think this is all poop related. Next step is to dilate her anus where the muscle is that must relax to pass poo. Depending upon severity surgery may also be needed for the anterior anus. What joy :/. But Ellie is eating better she is happy not spitting up no crying Bo fussing or anything. She smiles SO much now!!

Thank you all so very much for your thoughts and prayers you all are so amazing and I thank you for all of your support. It's scary having children but it's easier with wonderful women like you :)

[Dani711]

awwww...will that be something she will have to deal with as she is older?  

isn't it funny how a good poop from them can make you so happy? lol!

[SunWorshiper_26]

Ellie saw the GI today. She has anal stenosis (rectum too tight so she strains so hard to poop that she tears her anus :( and she has anterior anus so her anus is too close to her vagina which makes the path to travel to exit the rectum even more difficult. She also has GERD (reflux) and possible food allergy. GI dr wanted me to use forumula instead of BF and I was able to help her poop (rectal temp taking) and she pooped SOOOO much and now she is a happy baby. Every time she has to poop I do that and she feels better and symptoms are going away. HAPPY BABY!!  She is smiling and eating SO much better!  She is so comfortable and relaxed. I'm so relieved. So I emailed the GI dr and he agreed that I can continue to BF and do what I am doing and I'm to email him back in 4-5 days with an update. Hopefully all will continue to go well!

[Majikat]

awwww i hope everything continues to get better... my thoughts are with you! its so hard to see your baby going through stuff like that :(

[roxy562]

im glad Elli is doing better. keep us updated.

[SunWorshiper_26]

We have a pediatric GI appt at 10am tomorrow. Lil lady you are right we all three you me an Dani  have preemies so their bodies are still developing. I just wish it was easier for them :(

I'll let u all know what the dr says

[lil_lady25]

Aw hun, I am sorry to hear about this- I didnt know. I really hope that the doctors can figure out what is wrong so Ellie can be her happy beautiful self. Taylor used to cry when she ate too and it breaks my heart everytime. She also didnt have a stool in several days which worried me. We gave her lots of warm baths and moved her legs around to help stimulate and even gave her some Apple/Prune juice (ped recommended). Regardless she finally went #2 a few days later and has been in a great mood since. Hopefully like mine Ellie will feel better in a few days. Because they are preemies they're little bodies are still developing. Keep us updated.

[Dani711]

I am having issues on the Ailementum this time.  Cassidy gags, spits it out, cries.  Hates it.  I got it down her mixed with my milk last night.  Her face is all clear and she slept greast last night and today.  It sure is a fight to get her to take it.

So what is your next step?  The upper GI?  Clearly it is not normal.  I felt awful that I waited so long with Colter thinking it was "colic" like they told me at the er.  After taking her to the ER and back to the ped. I finally got a dr. that solved it all in one visit.  Funny, you take your baby thinking it will be a fix right away but dr.s just don't have all the answers.  Listen to your gut and keep going until they figure it out.  Babies don't scream in pain unless they ARE in pain.  The ER dr. told me that "colic doesn't hurt babies"  That is BS.  At least you are doing everything you can and will have answers soon!  :)

[SunWorshiper_26]

Thank you both for your suggestions :). I have eliminated onion broccoli caffeine and all and we tried the formula you are talking about Dani good suggestion our GI dr told us that too. Unfortunately that formula she screamed bloodily murder like she was in pain about five min after eating it and screamed for 10-15 min straight until she puked it up. Then she was happy. After that I went back to BF because at least with that we didn't have scary screaming that sounded like pain v
Thank you both for your suggestions I really really appreciate it!

[Dani711]

Have you tried the Alimentum formula?  I had to bring Colter to the ER at 6 weeks, he was born 7.8 and was only 7.9.  They said he was fine.  We finally figured out that he had reflux and a severe milk allergy.  I kept bf'ing for 6 months while supplementing and he did so much better.  
I am so sorry, it is SO scary for a first time mom, and a second time mom and a third...lol, really it is so hard when they can not tell us what is going on.  

Best of luck.  We are on our third formula (trying the Alimentum) and tonite we are going to see how she does.  I am so over bf'ing this time around.  I did it so long for Colter but he seemed the happiest on the formula.  IDK, many prayers for Ellie!!

[trying43]

I was allergic to milk but my mother still bf me.   Also my good friend who had her son at 35 weeks she bf him for 3 months with minimal problems, later he would projectile but only after she started formula, turns out it wasn't milk allergy he was lactose intolerant.  They put him on the formula for that and he did way better.  My oldest son spit up a lot and would cry a lot, no projectile though.  I eliminated all dairy, caffine I am a tea drinker, spicy foods, garlic, onion, gassy veggies like brocolli and beans and it helped some. He still spit up but it was way less and he quit the crying.  When he got about 6 months i was able to slowly add a few spicy foods back in not a lot and chedder cheese and other hard cheeses, no processed cheeses at all. Maybe it will help y'all too.  Have another friend whose son has reflux really bad, they added probiotic supplements on advice of dr and his stopped. I am glad they ruled something out and hope all gets better soon.

[SunWorshiper_26]

Spent last night in the ER. Pyloric stenosis completely ruled out all bloodwork is normal. Pediatric dr was able to get us a GI appt for Tues but Ellie is now 9lbs 13oz! :) and doing MUCH better after I stopped giving her Zantac. No puking no constipation and full of smiles. GI dr thinks she has a milk allergy and made me switch to formula which she threw up and cried in pain from so I'm BF whether they like it or not. Starting today eliminating all dairy just to see (I've done it before). Thank you all for your prayers!

[Momma2MyAngel]

aww im so sorry.. i will keep her in my prayers and you also for peace of mind. poor baby. let us know how her next tests go. im curious to wahts going on.. leila is on antibiotics for her poor breathing and thrush. so difficult to watch your baby be in pain and distress. i hate it. lots of thoughts sent your way.

and yes i would keep calling the doc too until they do SOMETHING to make you feel better and reassured. :)

[trying43]

I am sorry u and her are going through this, y'all are in my prayers.  When the docs wont do anything call them over and over or call other doctors, what u described is not normal and I would be scared too. Good luck.

[SunWorshiper_26]

Thank you so very much. It has been really rough. Yesterday I had to wake her to feed her she was so sleepy which is so unusual for her. Today she is eating slightly better maybe. I'm just so scared. Hoping they figure this out soon

[seattleview]

Oh, sweetie, I'm so sorry you are both going through this.  I hope the doctors can figure out what is happening and find a good/fast way to treat it so that your little family can start enjoying life a little more.