Monday, July 20, 2009

Out of the Haze

I feel like I have just walked out of a very long stay in a very dark woods. The past 5 1/2 months have been the most wonderful and the hardest months of my life! I feel like I've been unable to deal with anything. I feel like I've avoided people, bills, basically real life.
Every morning I woke up with no clue what was in store for that day, all I knew is I had been awake most of the night and I knew I was too tired to do much that day.
It really has been rough. REALLY rough.
Prior to having Barclay, not getting at least 8 hours of sleep equalled a grouchy me, headaches,and pretty much an awful day. Fast forward 5 1/2 months and I have not gotten more than 2-3 hours sleep at a time since Barclay's birth. I think it's incredible that:
a.I'm still alive.
b.People still want to hang out with me.
c.I'm still alive.
I've been worn down, I haven't had the energy to exercise. I haven't had the energy to do anything except the bare minimum. That included feeding Barclay, doing my work, and sometimes a load of laundry, and of course my very needed therapy...blogging. All my days have run together, it is just one big blur. Nothing with Barclay is a blur, because I've made sure to remember and treasure every moment with him, good or bad, but everything outside Barclay is a blur. Everything else is hazy.

I just to give a quick run down of Barclay's health, because so many people have asked me:

-At 2 weeks old, figured out he and I had Thrush. Had to get on antibiotics.
-At 3 weeks, he was screaming so much for several hours at a time and was inconsolable. We took him to the night pediatrician and he told us,
"He has reflux, put him on previcid."
I was so tired and didn't really question him. I had no idea how many babies they "diagnose" with reflux, without trying to figure out if that is really it.

-Previcid helped a lot. But he was still crying quite a bit. So I got of milk for 2 months, I got off Gluten for 2 weeks. No change.

-His problems started getting worse around 3 months. I took Barclay in several times for his Pediatrician to only comment on his healthy weight and give me another way to take the previcid (take half at night, half in the morning, double the dose, etc.).

-I tried: ground up papaya tablets, Reliv, Probiotics, blackberry wine (just a little for him and a lot for me), natural stomach tablets, and some I can't even think of right now.

-He started getting so bad that he was up screaming half the night and nothing worked to calm him down. At 3 months, I started basically sleeping with Barclay in the guest room just to survive.
-I also noticed that he could only poop while standing up. Once a day. And it seemed painful.
I finally switched doctors to a very nice man who LISTENED to me. He told me he thought it might be a blocked bowl, or a narrowing of a part of the upper gi tract.
I finally felt validated.
-We were sent to Mission hospital where Barclay drank Barium and had xrays of his upper Gi which was very painful to watch.
RESULTS: He had no valve to control acid, and a possible hernia.
-Next test, they had to put him to sleep, put IV's in his head! and do an endoscopy.
RESULTS: Xray had been false, every thing looked good. He does have quite a bit of inflammation and acidic burning in the stomach

-Barclay had a bad rash for two weeks, we took him in because he was screaming and it was welting. They sent him in for an ultrasound of his kidneys and bladder.
RESULTS: Clean.

-Next test, a 3 hour stomach emptying test.
Barclay drank my milk with some radioactive stuff in it (I know I'm cringing thinking of it)They did a scan of him 2 minutes after drinking, 1 hour after drinking, 2 hours after drinking, 3 hours after drinking.
Results: Perfect.

-I felt totally stupid. All that money, all that pain, and nothing was wrong! Well something was wrong, but nothing they could find was wrong.
(I think back and wonder if I should have tried more natural stuff, I wondered if I was a bad mother for just letting the doctors take over. I was so tired and so hazy, I didn't have the energy to question or fight. But Barclay's pain was so evident and so constant, that as his mother, I felt it was my duty to search out all possibilites of severe problems. Because I would have felt awful if there was something truly dangerous wrong with him and I had dragged my feet.)

-I notice 3 weeks ago that Barclay was pulling at his ear, I took him in for an ear infection and he said he had no infection. Barlcay still had a terrible rash.
-I pulled him off of Prevacid myself, he was screaming but it was a different kind of screaming than usual.

-I took him on Friday to the Ped because his ear was swollen red, scaly, he still had a rash and several other places that were starting to grow, peel, bleed. He was also bleeding out of his ear.
RESULTS: Infantigo. Severe middle ear infection, and rash.
Treatment: 5 different creams and medicines.
I also start feeding Barclay Kefir with rice cereal mixed in, along with other veggies.
1 day later, I start seeing a difference. Big time.
He also for the first time in about 3 months was able to poop laying down (this i think was the Kefir).
RESULTS: Naps. No screaming at night. Happy happy baby. Happy happy mama.

Last night was the first night in 2 months that I have slept the entire night with my husband. Barclay woke up 2 times but I was able to feed him and put him down and that was it. I then went back to my bed and slept with Noah.
Barclay woke up cooing at 7 instead of his usual screams.

Today I woke up in my own bed, NOT totally exhausted. Noah brought Barclay to me to nurse and we had a very sweet time with the three of us.
I then got up, drank tea while Barclay played, did some work...and I know that Barclay will nap for two hours from 10-12. Because he has done it the past 4 days.
There is a light at the end of the tunnel.

I am going to drop a feeding for Barclay if I can, because I know he can go without it. I'm pretty sure in the next week or so, Barclay will be able to sleep through the night because he isn't in pain any more.

I have felt very defensive of myself lately. People think that I am too soft, hold him too much, don't let him cry it out. Let me tell you, I've let him cry it out all the time. Sometimes for an hour, mostly because I couldn't get out of bed. But nothing worked.

Barclay was in pain. Either stomach, bowls, or ear. He was in pain.
He isn't anymore. I don't know what happened, except that God healed him and it was nothing I did right or the doctors did right. It was God's mercy to me as a very worn out Mama who was starting (just barely) to feel a little bit bitter.

I'm not saying it's going to be easy as pie from now on (although that would be nice:-) )
I'm just saying that this morning I woke up and felt like I maybe could make it. That maybe I could have a semi normal life, that maybe I had more energy than just the absolute basics.

And maybe I could have the 5 kids that I've been wanting...

Praise the Lord!

To my friends and family. I'm sorry I've been out of touch, moody, and haven't replied to phone calls, emails, facebook messages. I'm sorry I haven't sent out my thank you notes for many sweet gifts. I was in a haze. But I think I'm back.

9 comments:

  1. Thanks for posting this and encouraging your readers to trust in God's mercy! I think you are a very good mama trying to do the best for her baby. Bless you for that!

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  2. We went through all of the same things you did, without the invasive testing. When nothing else was working and the doctor referred us to a GI specialist, I felt like things were getting too invasive, and cashed out with the doctors. I knew my baby better than they did and just chalked it up to Ben being a fussy baby, and having a bad case of reflux. Sure enough, that was it. When we started him on solid foods at 5 months, the problems started disappearing. All of the sudden at 5.5 months, my needy baby was sleeping through the night! The haze cleared and I could suddenly function again. At nearly 9 months old, he is still sleeping 12-13 hours every night and the problems we had almost seem like a really bad dream. I hope Barclay experiences the same relief soon, and really hope he starts sleeping well so you can sleep well too. I know exactly how you have been feeling. Glad to have you back, Mama!

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  3. Helen Joy ~ I love reading your blog! I am so sorry you have been having such a hard time with little Barclay. I wish you and Noah the very best with him. And I hope he is on his way to being the happy, healthy baby that you know he is. God Bless all of you!! Dana Holshouser ~ Aurora and Spencer's friend. Come visit I would love to see you all.

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  4. whew..glad to hear it! hope you have a good day!

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  5. I am so glad that things are getting better! I hope they stay that way for you! Ellie Kate was a horrible baby for about 3 months (she did have acid reflux) so I can sort of feel your pain a little bit. It is really hard when they are so needy and you can tell something is just not right! Anyway, 5-6 months is a great age and I hope you really enjoy it now that he seems to be feeling better!

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  6. Thanks for stopping by my blog :) Sorry to hear about the back and forths with the docs. My nephew, now 3, has been through this too. I think they've finally diagnosed several food allergies. And I personally have struggled with IBS. So I totally feel for your little babe and for you too. Going to the doctor and trying out so many different meds is a real pain in the neck, especially when they have so many negative side effects. For me, now that I've been diagnosed with IBS and have no other major digestive system problem, they have me on an anti-anxiety med, since this is where they say the cramps come from. Only problem, I don't sleep well now and I'm always tired. So sad your baby has to go through all this too. Hope he gets through it all and at this age, only you will remember the suffering. Good Luck!1!!

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  7. I am soo sorry. I cant think of anythign worse tahn a sick baby. I really can't. All the helplessness, the second guessing,...I am sorry. And SOOOO glad to hear that he is feeling better and you may have a chance to come out of that blurr..

    <3

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  8. Hi Helen Joy,
    I work with Noah at KW. My grandson had the same thing when he was a baby, he's 5 now. His poor mom and dad didn't get any sleep and went to Drs all the time. Was on previd and just lately has been taken off of it. Are you still giving him Kefir? Maybe I need to tell my son about that.And when they have another baby then they can remember it if the new one has a problem.
    Jodi Neal

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  9. I totally know the agony of months and months with only ever sleeping 2-3 hours at a time. It's literally a form of torture. My first daughter screamed non-stop for the first 4 months of her life... turned out she DID have acid reflux, so putting her on meds helped her to be a more "normal" infant. My second daughter was born 6 weeks ago, and even though she's a better baby, I'm still amazed at how dramatically different I am when I can't get a full night's sleep! Anyway, I'm glad you pursued the root of Barclay's troubles until you found a satisfactory conclusion... I hope you get to sleep all the way through the night very soon. Hang in there! The worst is over :)

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