Wednesday, June 20, 2012

Elizabeth's Story (so far)

Elizabeth Kathryn was born two weeks early on January 25, 2010.

My pregnancy with Elizabeth was somewhat better, but towards the end my blood pressure skyrocketed, I was having headaches, and just not feeling great. I had a great doctor who actually listened to me and trusted me when I said things weren't right. So when I woke up one morning and just felt off, I just walked right into his office without even calling for an appointment. My blood pressure was "wow, kinda high" they said, and said I had other signs of preeclampsia. He said he knew something wasn't right because I told him it was time for this to be over and crying. I never cry.  He said okay and sent me to the hospital. 

I went in to the hospital and it turns out my blood pressure was 200/116 (way too high). So, yet again, I was induced. I was really hoping to finally have one labor start naturally, but I guess it wasn't to be. Tom arrived at the hospital and the doctor gave me an epidural. I didn't really want one, but because of my BP they thought it would be best to have as little pain as possible. I felt pretty good, and then...

I crashed. 

I remember waking up in a fog and hearing "okay, we might be out of the Woods!"  I wondered why they were talking about getting out of me....  They thought the epidural had lowered my blood pressure too much, and they had trouble getting it back up. Ironic. 

A little while later nurses and doctors were in my room having me flip, turn, and all sorts of tricks. I just did it... had no idea why. About five minutes later I hear "call it, we gotta go now! ... but all O.R.s are full!...get the one downstairs prepped!" 

Finally my OB says "her heart rate is not coming up, it's getting lower and I've tried every trick. Don't try to figure it out, we don't have time." 

When I crashed it wasn't because of the epidural, it was because I was beginning to hemorrhage, and now the placenta was abrupting (separating from the uterine wall) which leads to death for the baby, and can also be deadly for the mother.

I had to tell Tom to call my mom and his mother... "what do I tell them?" he asked.  I didn't have the courage to say "tell them one of us is dying,"  At this point it wasn't clear how much danger I was in myself.  

As they are pushing me down the hall to the operating room (which, I have to tell you, was the longest, most heart-stopping moment I've ever had) the OBs and the Anesthesiologist were arguing over whether or not I could stay awake. The OB was saying there wasn't time, I had to be put out. The Anesthesiologist said I could just have hyper-doses of epidural drugs since I already had one in. I really believe it was God's intervention that I was semi-forced to have an epidrual at the beginning...

They let me stay awake (although, I really didn't like the idea) but Tom could not be present. I don't know how much time elapsed from the call until she was born, but it was crazy fast. She came out screaming and fighting.  And then they took her away. 

She was 5lbs 8oz and 18" long. They said she had stopped growing about three weeks prior. The placenta was too small and had really stopped function well. And if I hadn't come in to the doctor that day, she definitely would have died, and there was a high probability I wouldn't have made it either. 

That still gives me chills. 

It was four or five hours before I could hold her. I was so sick from all the drugs and trauma that I couldn't do anything but lay flat. And vomit. Continuously. 

I finally was able to get Elizabeth into my room. She did not look happy. I was sure she was just as traumatized as I was. She wouldn't eat at all, really. She was losing weight fast. After three days, the doctor said I should go home (even though my pain was running rampant) because babies tend to perk up when mom's are home and more comfortable. 

We went home and I literally did nothing but hold her and try to feed her. By the time we went in for her check up three days later, she was down to 4lbs 8oz and had jaundice. I was desperate to make breastfeeding work... especially since I was unable to nurse Amy as a baby... so I tried everything. About day five she did finally start eating, and eating well... however, she was still losing weight. By her two week check up, she hadn't even broken 5 pounds. 

I had to borrow a baby scale and weigh her daily. We thought maybe she was too little to eat effectively, so I was also pumping and feeding her from a "closet to the breast" type of bottle. She still lost weight. I tried the tube trick. I tried dripping milk in her mouth. I tried force-feeding her. I tried the syringe... and anything else I could think of. She either lost weight or maintained, but never gained.

During this time, Tom and I were in and out of the pediatrician's office every other day. He was concerned and asked about giving Elizabeth formula. I said I really didn't want to, but maybe I could mix a bottle with half formula and half breast milk. He was okay with that. I have to say he was much less pushy than I expected him to be. He clearly wanted me to do formula, but was very respectful when I said I wanted to try other things.

At a few check-ups I told the doctor that she was very lazy when eating. She was constipated. She was irritable. I don't remember him offering much advice. Just that all of that is common in babies who aren't gaining weight. 

At her six week check up she was just a little over 5lbs, but still didn't seem right. She was still too lazy, she didn't want to eat, but cried a lot, and her stools didn't make sense to me. I said "well, I give up, I guess we'll just go ahead and switch to formula."  He thought that was great. And then he asked "when do you want to do vaccines?"

Are you kidding me?  This baby was born too early, into a very traumatic situation, hasn't been growing and is always irritable, and he wants to shoot her up with whoknowswhat?  Yeah, right. 

I sleep deprived. I was an emotional wreck. . . I mean, my baby wouldn't grow, I had a horrid c-section, I couldn't even walk on my own, and now I have to fight him on vaccines? I feebly said "you know, I really would rather wait until she's older to deal with vaccines."  His demeanor immediately switched from "happy and helpful" to "on edge and condescending".  "What are you thinking you're going to do about this then?"  I said I wanted to wait and there's no rush for it now. 
He said, yes, babies need to be protected and if she caught whooping cough in her fragile state, well, it might not end well.  I said I was sure she'd be fine for the next few months. He said "are you sure?"  I asked him about rates of measals and mumps, and haven't those rates dropped drastically over the last few decades, and didn't clean water and better living conditions contribute to this, more-so than the vaccines? He said "well.... yes... but measels are on the rise again!"  I asked "Oh, wow. So how many children have you seen in the last five years with measels?"  His answer? "Two."

So I have to vaccinate my tiny baby against something that basically doesn't exist, and it would really be an issue to wait a year or two?  He said it would be an issue, and we really shouldn't delay. I asked why, and he said--I kid you not!--"well, if she gets a fever or has an issue in the meantime, I'd have to admit her to the hospital right away... and... I'd have to test her... for several things...all at once!" 
 I said "so I should vaccinate her because you might have to run extra tests if she gets ill?"  I don't think he said much to that. 

I don't remember what we ended up doing with her. I think we did two vaccines when she was a couple of months old.  I feel like he knew I was not in a position to make a rational decision given that I was still on pain meds, had no sleep, and was really focused on Elizabeth growing. I think it was bullying. Why not say "as a doctor I disagree with you, but here's some info to think about, and we'll talk about it next time you come in." ?  

Anyway... after Elizabeth's six week check up, literally a day later, I noticed a white splotch in her mouth. What a minute... I saw that splotch when she was two weeks old, now that I think about it.   It suddenly dawned on me: she has thrush! And she had probably had it since she was a few days old. Thrush in newborns leads them to not eat well because their mouths hurt. They're gut is all of track, so their stools are funky. They don't gain weight well. And they are very irritable. How, how, how did the doctor miss this? This is a routine problem with newborns and doctors are supposed to check for this at every check up. How could he not have put all this together?  

I looked more closely at her mouth and saw that it was c.o.v.e.r.e.d. in white stuff.  Should I have spotted this earlier?  Yes, probably. My job as a mother is to nurture and feed and take care of the baby. His job as a doctor is to look for health problems and make sure babies are doing well. This was inexcusable. I was also miffed that my OB hadn't told me they have me antibiotics after my surgery, which would be a cause of thrush for the baby. 

I took Elizabeth back into the doctor. I was a little miffed and said "She has thrush!" the doctor said "Oh, is that what it is? Here you go, give her nystatin."  I took it just so I could avoid an argument, but I had no intention of using it. Nystatin kills yeast, but it also kills other things in the process. On the label it says "can cause diarrhea; mouth irritation; nausea; upset stomach; vomiting"

Yup, if I had a baby who couldn't eat, wasn't gaining weight, and generally not doing well, that's exactly the drug I would have her take.   

I went to our local health food store and told the owner the issues, what the doctor gave me and she said "what? He want her to die?"  Of course I know he didn't want that, but it did make me chuckle. She helped me find a yogurt with live cultures. I had to take it home, and then strain the yogurt so that it would make a paste. Then I'd take the paste it spread it on the inside of Elizabeth's mouth. I did this twice a day for ten days, and the yeast problem went away completely. (Nystatin must be used a few times a day for two weeks.) 

By this point Elizabeth was used to bottles and would not go back to breast feeding. I was so upset, but I had to appreciate the fact that she made it through the rough pregnancy, through delivery, and was now gaining weight, and just be happy about it. Once we switched to formula she took off, she did really well.   

If this was the only problem I had with this particular doctor, I would have just let it slide... we all make mistakes... but this is the same doctor who had misdiagnosed all of my girls, and hadn't been too nice in the process. So, yeah, I pretty much did not like him anymore. At all. 

So we get everything squared away, Elizabeth starts growing, she stays on formula (mixed with breast milk for a few months) and I held her constantly for a year. She is still petite, but has hit all her milestones and is a really smart, stubborn kid. 

When Elizabeth was about seven months old we moved to Kansas. She was a little cranky, but I figured it was just the stress of the move and the disruption in her routine, so we waited for her to chill out. At about a year old she started crying all day. Every day. Non-stop. She was really high maintenance, nothing made her happy, really. It was really tough on the family, it is such a downer to have a baby/child constantly angry and crying, and knowing there is nothing you can do. I tried everything I knew how: schedules, no schedules, new foods, old foods, movies, reading, keeping her mind busy, doing more quiet time,traveling, staying home ... everything!  She did like to be outside, so we tried to do that a lot, but you can't live your whole life outside, even if you are Primal ;)

I kept telling Tom that she would grow out of it, that she's just high maintenance and needs a lot of attention. We waited for months for her to grow out of this phase. Once we settled into Kansas we had a friend who would come over to my house a few times a week and help watch Elizabeth (and Amy at the time) so I could go out and run errands. My friend told me that Elizabeth was always good for her and she didn't see any of the behavior that Tom and I would see all the time. That made things a little more complicated... it really made me wonder if I wasn't being a good enough mom, or if the stress of starting a new school (for the kids), moving into a huge house, and having the new experience of Tom working from home--which meant coordinating schedules most of the time--, not to mention cleaning the 5200 sqft house, had really just upset Elizabeth too much.  I had taken her into a new pediatrician here in Kansas for a check up, and as I feared, her growth chart line was falling, not rising.  Here we go again!

I really tried to tone things down and get Elizabeth relaxed, but it didn't seem to help much. I added in more high fat foods and tried to make sure she always had something to much on. I don't think it worked much. By this point she is two years old and her behavior is getting worse. She was constantly angry. I mean anything and everything set her off. 

If anybody looked at her the wrong way she would scream, throw toys, scratch (and draw blood), she would even rip out her hair... and all the while she'd look at you like a wild animal. It was really scary at times. I started wondering if she had some sort of mental issue. Or could she have some sort of sensory issues? All of this continued for months and months. The family was held hostage to her moods. We couldn't go out anywhere because there was 100% chance she'd be disruptive and cut our trip short. We even had to switch off going to Mass on Sundays. There was no way we could even step into a quiet church with her. Thankfully, Grandma would take her every other week so we could attend Mass as a family.

I think also about this time we discovered she had another yeast infection. So I did all the routine things: took her off sugar, added probiotics, and lots of water and rest. It helped her irritability somewhat, but not for long. 

I took her back to the pediatrician, desperate for ideas, but all I got was "feed her more food. And you might want to make an appointment with a nutritionist so you can learn about healthy foods."  That is a common theme with doctors and nurses, they look at me and decide that since I'm big, it must be that my kids subsist on french fries and fried chicken nuggets. It didn't how much I would talk about the kids eating fruits and vegetables, and meats, and whole grains... they never quiet believed it. Anyway, I never went it for a $50 class on how to feed your baby.

Still, her behavior continued and it was really wearing us down. I even thought about enrolling her in a preschool. My thought was that if she were nice enough for other people, maybe she'd be happier in a different enviroment. I was sad though, because I really didn't want to "send her away."

About this time I decided to write a post about Veronica's health issues, and while I was writing about it, I thought how similiar Veronica's behavior and that of Elizabeth's seemed to be. This made me wonder if, just by chance, Elizabeth's rage, and tiredness, and poor growth had more to do with dairy than it did with environment. So Tom and I decided to take her off dairy for two weeks just to see what happened. 

Within five days we could tell a major difference. We were cautiously optimistic since she had briefly gotten better after we went Primal, but then it came back. So after two weeks and she was still improving, we decided that it was indeed the dairy causing the problems. She can have yogurt and butter, but anything else seems to be a trigger for her.

She is now a completely different child. We attend Mass as a family. We are able to eat out at restaurants. I can even take her grocery shopping now. She refuses to sit in the cart, of course, but she'll walk happily along side of me.  She is still very stubborn, and she still has days where she wants what she wants and she'll let you know it, but at least you can redirect her attention and get her to be happy at some point.I no longer have to think about putting her in preschool either, and that is a big relief.

She is sleeping better as well, but the best part is that she has started growing again! She is putting on more weight and is getting a bit taller, thankfully. At 2.5 years old, she can still wear some clothes size 18 months, and some size 24 months, which I consider a success. Thankfully she seems to have no long term effects from the placental abruption, and we look forward to seeing what she accomplishes in life with her strong will and her "can do" attitude.  

We are very grateful that we decided to take the whole family primal. Who knows where we'd be mentally *and* physically if we had never taken the leap. So we are a real testament to the great effects of Going Primal. 

And hopefully the rest of Elizabeth's life will be very healthy and she won't need extra paragraphs added to her health story.


  1. How many times can one woman hear "If you hadn't come in today your baby would have died." !? You have some sixth sense about you, Heather!! Amazing!!
    And good job spotting the dairy intolerance! Isn't it crazy! I always tell people to think about allergies if their child has behavioral issues. It's so common and the last place doctors look. I'm so sorry for all the trauma you had to go through. I never even knew about the abruption or c-section. Thanks for sharing your stories.

  2. Wow! I'm so glad you discovered the cause of Elizabeth's distress. Once again, I'm amazed at how severely dairy affected her. Oddly, I started wondering if the RSS reader had screwed up and was giving me an old blog of yours, but no, you had gone through this before. And it was your earlier blog entry that let you recognize the problem.

    Boy I'm with you there on not recognizing a bad pattern. I am just now getting over a recurrent infection and kicking myself that I failed to recognize it until after I started to recover, a little too late to prevent all that misery. We suppress the memory of past misery as quickly as we can, sometimes too quickly.

    I hope your family is all through with mystery allergies now, but if they do occur you can identify and deal with them promptly.

  3. Your whole family seems to be a success story, at least so far! :)

  4. I swear, you must be one tough woman. After hearing these stories, you've permanently earned by utmost respect. I am so very glad that you guys found resolution to many of the troubles that you've had, but inevitably there will be more. Hopefully, due to your change in lifestyle, these future troubles will be minuscule in comparison. Either way, I don't see that there is much that you can't handle. Don't take this the wrong way, but from much of what I have learned about you and your life, you remind me of my grandmother. She was both tough and smart.