Friday, July 23, 2010

Once Upon a Time: How it All Began

The beginning is the best place to start so here it is, from the very beginning. This post is going to be long partly because there is a lot of ground to cover to catch you all up to present day, and partly because I ramble. And just a warning, I’m going to talk about vomit, constipation and poop so you may want to put down your snack before continuing on.

It was a sunny day in May (honestly, I don’t remember if it was sunny but hey, why not?) and G was nearing 6 months. She was cute, growing strong and healthy and..and… I’d like to go on an on with adjectives about how sweet she was but I’d be lying. She didn’t sleep at night. She never cried, she screamed. And when did she scream you might ask? Every time I set her down. No, I’m not kidding. I love my kiddo but honesty is the best policy and the truth is, she wasn’t easy.

My solution? Let’s feed her! She had been a prolific pooper since birth (I warned you!) and a great eater too (just breast fed) so, perhaps she was just hungry? It was a little earlier than when we introduced food to Eloise (our first) but I felt strongly that food would make a difference. (So much for mother’s intuition!) We had started E on rice cereal and she quickly became very constipated and we had to switch her to oats so, I decided to skip rice cereal for G and start her off on mixed grains.

• May 6: I prepared some very runny, mixed grain, baby cereal. We put G in her high chair. We took a million pictures. We all took turns feeding her. Daddy and E fed her, Mommy and E fed her. E spilled cereal all over Mommy in effort to feed G so we mixed up more cereal. She loved it! We couldn’t get the spoon from the bowl to her mouth fast enough. Hooray!

• May 6 – 11: She ate some baby food each night and all seemed to be going well. I honestly don’t remember if I saw any improvement or decline in her overall fussiness or sleeping. I wasn’t watching her like a hawk as I do these days, but she did love to eat. I remember that.

• May 11: She was getting a little constipated. We had been down that nightmare-ish road with E and I wasn’t going there again. I switched from Mixed Grains to Rice Cereal thinking this might help things get moving.

• May 13: The constipation got worse and we were planning to leave town for a wedding so I decided to just stop the cereal for a few days.

• May 13-15: She didn’t poop for three days

• May 15: Sorry Brit and Danny, but one of the things I’ll remember about your wedding is that, at the reception, Ginny finally pooped. EXPLOSIVE. (Hope you took my advice and put down the snacks – and don’t pick them back up yet, soon it will get worse).

• May 17: Monday. It was a normal day like any other. I don’t remember feeding G cereal that day. We might have. I don’t think so. I guess I just can’t say for sure. Maybe she got a crumb of something off the floor or the residue of food off of Ellie or I? We had been out of town and at a wedding. The kid's sleep schedules were way off and we were glad to be home, letting them sleep when they needed to. Ellie had a friend over to play in the afternoon. John got home, we ate dinner, I fed G, put her down to sleep and headed to the grocery store (about 7:30 p.m.). I think it was about 9 p.m. when I got back and called John as I parked the car; wondering if he could come out and help me carry in the groceries.

First tangent: Here it is important to mention that my husband is one cool cucumber. It’s maddening to even try to fight with him sometimes. He doesn’t ruffle easy. He doesn’t yell. He has no ‘hurry’ in him. I think of him and his brother as ‘slow’ and ‘pokey’. My husband's lack of 'hurry' and poor time management skills drive me bananas. (Love you honey!)

Anyhow… I called him and he was panicking. His urgent words were something like, “Get in here fast, Ginny’s throwing up and she won’t stop.” I hurried. His panic made my panic worse and, when I walked inside, my level of panic ratcheted up at least another ten notches. Ginny was extremely pale, cold and clammy. She had been throwing up almost non-stop since starting about ten minutes earlier. She was already so wiped out that she was no longer crying – as if she was too exhausted to even cry. I thought we should head to the ER immediately. John wasn’t so sure. I called my Mom. Is this what everyone does or is this my first reaction because my Mom is a nurse? She had no insight and suggested we call our doctor.

Ready for another tangent? Our family doctor rocks (and so does her staff). If you page her, she calls back immediately. She is phenomenal with our children. She always gets us in right away when we need to see her. She is knowledgeable and calm and kind and, I thought up until this point, that I couldn’t think more highly of her than I already did. I was wrong. From this point on (although not particularly due to her role in this part of the story) I will refer to her as Wonder Woman. We paged. Wonder Woman called back. I said ‘pale and cold.’ She said, head to Children’s Memorial ASAP. So we did.

G threw up and gagged the entire ride to the hospital. Her breathing was so shallow that I was afraid to put her down. Just remembering it as I type makes my hands shake. At Children’s, they gave her Zofran to stop the vomiting (this is what they give cancer patients when they have chemo treatments). Her symptoms led doctors to believe she had intussusception, when a portion of the intestine kinda telescopes back in on itself, or torsion, a twisted bowel. They planned to determine which of these conditions she had via X-ray. X-ray results showed no torsion, but did show high air fluid levels, still indicative of intussusception, so next G would be getting an ultrasound. In between the two procedures, we were informed that resolution for intussusception was surgical so, between impending surgery and Ginny’s obvious dehydration (she was in shock), they felt she needed an IV. One hour of G screaming. Three people. Six tries. No luck. No IV. We headed to the ultrasound absolutely exhausted in every possible way. Have I mentioned that we had Ellie with us this whole time too? And the ultrasound was... negative. Nothing. So to recap, no torsion, no intussusception and no clue what else might be wrong with our kid. No reason to give her an IV now either so they encouraged me to nurse her and I did. And she ate. And she began to turn pink again and sleep sweetly in my arms. And they sent us home. Besides, “See your doctor to follow up tomorrow” they told us nothing. NOTHING.

• May 18: We did see Wonder Woman the next day and she was shocked that they didn’t give us more information. Apparently, intussusception can resolve itself, but would be likely to come back again, so it wasn’t quite out of the picture yet. She checked out Ginny, couldn’t believe the difference between the report she’d received of the kid who had been to the ER last night and the kid she saw in front of her, gave us loads of info and things to watch for and we went home. All four of us napped that day. We didn’t do much else. It was hard to put G down. The panic didn’t really subside for days…. But honestly, G was back to her normal self and so, eventually, were the rest of us.

Ginny, healthy and happy on Memorial Day - before dinner...

• May 31: Time had passed and nothing had happened. I went back to exclusively nursing G and, although it took a few days, she went back to voraciously eating. By May 31, Memorial Day, we decided it was time to try cereal again. Rice cereal. I remember feeling nervous. We didn’t take pictures this time but, again, Ginny was thrilled. I didn’t feed her a ton (maybe a few tablespoons?) but she LOVED every bite. So we fed her, I nursed her and it was off to bed by about 7:30. At 8:50 she woke up screaming. I considered waiting a few minutes to see if she might, ‘cry it out’ but, for some reason, didn’t. When I got down there she was covered in vomit. Somehow, I knew she would be. We were heading back to the ER. After the last ER trip we had discussed what we would do with Ellie should we have to go back again and had, just in case, asked some neighbors if they would be willing to come over and watch E. (Last time we were there until about 2 a.m. and Ellie didn't fall asleep until 1!) We had plans and back up plans but, apparently, not enough. It was the Stanley Cup finals and the Blackhawks were playing that night. No one even answered their phones. So the whole family returned to Children’s.

By the time we arrived, G was in shock. This time it took her less than 30 minutes from onset to get this way. She was vomiting up neon yellow bile. They gave her Zofran again. Another round of X-rays, another two specialists and another four tries for an IV with no luck (too dehydrated) and this time, an upper GI. More unusual air fluid levels but no other unusual results from either procedure. It was the middle of the night. It was a holiday. We were told that there was no chance we were going home. John headed home with Ellie and I stayed with Ginny, prepared to spend the night so they could run more tests the next day. I wasn’t necessarily thrilled that G would be admitted to the hospital, but I was relieved thinking that we would get a diagnosis; some answer as to what was happening to our little one. Time passed. G stopped vomiting. They suggested I nurse her and she ate and slept peacefully, slowly regaining her color. She and I slept and, when they came to check on us and saw how she looked - that’s right, they sent us home. 3 a.m. John had just gotten home and gotten Ellie to bed when I called and asked him to come and get us. It all felt surreal. Between the sleep deprivation and lack of answers, my head was swimming.

• June 1: Perhaps I should have slept that day. Ellie did. Ginny did. John went to work after lunch. I couldn’t sleep. So, I did what I believe most people would do. I got on the internet and began to search. Eventually, out of sheer frustration, I googled, “baby vomits rice cereal” and there it was. FPIES. Food Protein Induced Entercolitis Syndrome. John and I had both searched the internet for answers before but nothing fit the bill like FPIES. Every blog and website I found echoed our story. Since we didn’t get home until 3 a.m., we didn’t plan to see the doctor that same day but the next day instead. I printed off all the information I found, determined to share it with Wonder Woman.

• June 2: We went to see Wonder Woman. Have I mentioned how awesome she is? Yeah... I guess I have. (What I haven't mentioned is how unhappy we were with the majority of the care we'd had at Children's but that's another story for another day or maybe a post on Angie's List or Yelp. Grrrr.... ). Anyhow, Wonder Woman still felt it might be intussusception. I showed her what I found. She was hesitant and, to be honest, I understood. You can find all sorts of craziness on the internet and I'm not a doctor. She promised to review the information and get back to me. She called later that day and said, "I think you're right." Amazing. Ab-so-lute-ly amazing. She admitted to never having heard of FPIES, but did some research on her own in addition to what I'd shared with her and came to the same conclusion I had. So there it was. FPIES. But now what?

Now what? Well my faithful readers, now I take a break. Yes, I know I don't have any faithful readers yet because this is only my second post but I believe you will be faithful readers eventually and I do need a break. More soon.....

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