Saturday, November 12, 2005

The end is coming

J is still sick today but he seems to be in good spirits. However his "red ring" around his hiney hole is TERRIBLE. The worse I've seen it despite the tons of bum creams I've been slathering on. Since this is a big indicator of a food allergy, needless to say this is beyond discouraging. I feel like a wave came over me today and I realized what I'm eating has little effect on him and this TED is now pointless. It could be his cold has made his stool more acidic, or it could be something like teething making his poop worse that we aren't aware of or it could be I'm still eating something that is causing him problems. I've always been suspect of the rice, but I just can't bring myself to pull it from my diet. I wouldn't even know what to exchange it for. Nothing is safe, do you hear me? Nothing! I'm actually wondering if I could be dealing with BOTH a food allergy and Over Active Letdown which may have caused a foremilk/hindmilk imbalance. If his system was already sensitive, that could easily occur. I've learned that a temporary lactose intolerance can develop if the gut is already suffering from something like colitis. I stopped block feeding when my diet became so drastic, I was very worried about a drop in supply. Hell if I know, it could be a million other things or nothing at all. Maybe we're just screwed.

He has his well-baby Monday so I'm going to see what his ped thinks. And Tuesday I'm calling the GI back. I think I'm mentally ready for him to go on formula. 99.99% of the time breastmilk is best but that is not always the case when food allergies are involved and I need to understand this, I NEED to come to terms with it. At this point, no my milk is not better than a formula, not when something in MY milk is getting to him causing these issues. There are tons of babies who just couldn't thrive on breastmilk and were so much better off on a formula like Neocate. There comes a time when you just have to do what is best for your baby even if it goes against every fiber of your being.

Who knows, maybe formula won't help him and if that's the case he'll be right back on breastmilk. The only thing I'm now struggling with is should we scope him to determine if it is allergic colitis which would help confirm if the formula would help, or just go right to the formula? Do I have enough faith in the GI to read the biopsies well enough not to miss anything? Should we do more thorough (read: more evasive) of a scope, like a colonoscopy and endosopy instead of just a flex sigmoidoscopy, since things like this can be patchy and can be missed? How much do I want to put him through? How will I feed him the formula? I ordered the boob bottle last week but it feels like it's taking forever to get to me. We haven't tried giving him a bottle lately, it seemed like such a waste of breastmilk, time and frustration when I'm already mentally overwhelmed.

I *promised* to stick out the breastfeeding for the full 8 weeks. I'm on my 3rd week and I know it could take much longer for things to be better but when things are looking worse, that's not a good sign. I think this is is 3rd day in a row without blood in his stool, a positive sign. But with the worsening red ring, the degenerating sleep habits and continous mucous in his stool, it's hard to see anything positive right now, plus his stool is DARK, DARK green. I don't even have any vegetables in my diet, or anything of color, to blame this on.

This sucks and it's not fair (as I say stopping my feet and throwing a tantrum like a 4 year old!)

14 Comments:

Blogger Krista said...

I'm so sorry you're having to deal with this difficult situation. Sorry for Julian to have to be so uncomfortable all the time. I know you have his best interests at heart and no matter what you decide re: testing, it will be the right thing. I can also tell that quitting bf-ing is pretty tramatic for you and I'm so sorry that it seems like Julian may need to go to formula. I wish it were different, but as you know in your heart, you are doing what's best for your baby boy.

2:43 PM  
Blogger Zenchick said...

repeat disclaimer: I have never had a baby. (I'm the one with the niece who had a similar scenario and flourished on formula IMMEDIATELY, like after one 6-oz bottle. It was also very emotionally difficult on my sister-in-law, but ultimately emotionally much better when the baby was no longer sick and miserable). I can only understand theoretically how hard this must be for you.
I just wanted to suggest that it's much easier and less invasive and stressful to give the formula a try than go through all those medical procedures. If your little one is anything like my niece, you'll know fairly soon (if not right away) if it makes a difference.
Thinking of you in your struggles.

3:08 PM  
Blogger littlefeet said...

omg hun...you have fought so hard for this little one...huge hugs to you...i wonder if you could pump and freeze and re-introduce the breastmilk in a month or two...i dunno...you know i am all about bfing...but you have done everything you can and something is still not working... *sigh*

hugs hun...

peace...

3:27 PM  
Blogger Kate said...

I've gotta say- I am so impressed that you have stuck with breastfeeding this long! I think I would have thrown in the towel long ago. Good for you for giving it your best shot.

3:30 PM  
Blogger dakotablueeyes said...

I didn't breast feed so I have no idea what you are going through but I do remember my granma saying that she tried and couldn't do her babies cause something was wrong with her milk. My cousin just breastfed for 9 months, not sure if that's why or if she just didn't want to feed beyond that point. I hope you find the cause of his trouble though that in itself would be frustrating enough for me.

3:58 PM  
Anonymous Carol said...

I'm wondering if you don't have a variety of issues going on all at once. It's not untypical for a baby to sleep fitfully or to have that ring around the anus. J hasn't had bloody stools for 3 days now, right? That must be a good sign. I'm just saying, all of these things that you describe may actually be independent of one another. It's so hard to tell!

I don't think I have to remind you, but I'll remind your other readers: By removing breastmilk, even if it's upsetting his tummy, you are also removing the protective mechanism that breastmilk provides. So giving a baby formula should never be something that is considered hastily.

Cara, I'm beginning to think that this issue with J is NOT from your breastmilk. If you want to put him on the formula, do so. Just keep pumping your milk so that if the formula doesn't improve things, you can go right back to breastfeeding.

Given that breastmilk provides more than just nutrition, I'd probably opt for some semi-invasive testing - but nothing too over the top. Can you guys afford the special formula? Would your insurance pay for it?

4:16 PM  
Blogger Kira said...

Cara, I'm sure you will do your best to make the best decision for your son. My totally uneducated guess is that i would go for some kind of scope. i don't think it is what you are eating. and as for red rings... my son has always and still has a red ring. I've changed a few babies with red rings. i mean, how bad is it? i just thought it was normal.
i agree it is very hard for you to carry on this way, with this diet.I couldn't do it.
If you can get the hang of pumping and doing formula at the same time, i wish you luck. Maybe the formula will work and yay if it does -- but I suspect the formula won't be any better. but who knows.
keep in mind something. those babies that have multiple allergies and are very allergic mild things like rice, like those on the POFAK list, they are very rare. That list is like a worst case scenario list. It brings together some very extreme cases. It's easy to suspect the worst when you hear all those women's stories of their kids.
I really wish you the best Cara. email me any time, if you need an ear :)

5:11 PM  
Blogger Kether said...

I don't have any experience with food allergies, but I do with formula feeding. When Liam was born, he wouldn't take to my breast and I was devestated. I had been so firmly set on breastfeeding that I had never even considered formula. No one could get him to latch and his blood sugar was dropping to dangerous levels. He ended up on formula and it was a horrible transition period for me. Finally I realised that the breastmilk would have been ideal for him, but that I don't live in an ideal world and that he could still be happy and healthy on formula and I could still be a good mother, even if I bottle fed him from a can.
He's almost ten months old now and very healthy (knock on wood) and beautiful and everything is fine. I only have twinges of guilt now and then, but mostly I know it was the right decision.
I don't know if that helps you any, but I know the struggled between breast and formula is a personal and difficult one.
I hope you find a solution for your adorable boy.

5:48 PM  
Blogger The Mom said...

I'm so sorry. I hope whatever you decide to do is what fixes the problem and J's feeling better soon. The photo shoot sounds like an ordeal, but I'm sure it's going to be beautiful - I can't wait to see it. Very sweet letter to J (and happy 4 months!) also. And good call on Bryan's part with the spa certificate! Sounds like you can really use it. He's a good man!

9:14 PM  
Blogger Anne said...

All I am going to say is this: Whatever you decide will work out just fine. Try not to beat yourself up about it. If by taking a different tact everyone in the family benefits (especially J, of course) than that is really all you can hope for. I'll be honest with you. If either of my girls had experienced the same problems that Julian has, there is no way I would have continued nursing. You have gone above and beyond and you know what? Breastmilk is best but formula is a far cry from poison and I can't believe that formula-fed children grow up any less intelligent or less healthy than formula fed.

12:28 AM  
Blogger nwr said...

Hi, i'm a long time reader. you and your son are living my life (17years later). my son had severe food allergies but because he was thriving NO One really cared. he cried 20 hours a day, his cry was like an animal, he was in pain and i was miserable and at my wits end.
He had a barium swallow, barium enema, ph probe and a sig scope.. all test showed inflammation but nothing conclusive.
when he was about 6 onths old i found a book written by DR DORIS RAPP. she is a GOD on allergies. google her name and try to get every book shes written. I feel the best book is "Is this MY Child". my son had the constant animal crying, red ring abound the butt, red cheeks and the stinky feet..........all indication of food allergies. check her out, try to get a email consult or find a doc in you area who believes in her philosophy.
hang in there and try to remember that your son will not remember any of this.
take care
nancy

8:17 AM  
Blogger Candice said...

have you tried baby powder on the diaper rash? On my second son diaper cream didn't help, and the only thing that did was the powder, by keeping it dry. It's worth a shot.

12:40 PM  
Blogger Melinda said...

as far as breastfeeding Vs switching to formula its all up to what you, your Dr. and Husband all decide is best for J, You and your family. There is pros and cons too both. You have already given him pretty much if not all the immunities you can give him via breast feeding. Most Dr's are happy when people can make it thru 8 weeks of breastfeeding and you have doubled that! The red ring...My youngest son is allergic to ZINK OXIDE! He had that ring around is lil bum for like weeks and i couldnt figure out why it was getting worse when i was latering him up with varius bum stuff. Then i tried coco butter diaper cream (zink free) and it was gone by the end of the day. I also have to be carefully b/c certain brands of diapers have Zink in them.

12:45 PM  
Blogger fuzzypeach said...

Ah, Cara, *hugs*

You're right, it's not fair. I would be heartbroken if I couldn't nurse Pearl and my heart aches for you. I want to second what Carol said to keep pumping so you can go back to breastmilk if formula doesn't fix things, if you decide to go ahead and try formula.

I want to say again how impressed I am at the lengths you've gone to bf Julian. He is a lucky little guy to have such a wonderful mama. Keep us updated; I'll be thinking of you guys.

4:29 PM  

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