Saturday, April 24, 2010

Lessons Learned

I wasn't going to discuss Mary Lawrence's current problem because I can hear the sheer horror in her voice as as she reads this in about 10 years when she's a teenager. But I decided that maybe our experience might help some other parents of toddlers out there avoid this conundrum so here it goes....

Around the first of the year Mary Lawrence started getting really constipated. It got so bad that she was only going every 4-5 days and when she would it was so awful and painful for her. I kept thinking more fiber would solve the problem and I overloaded her with fiber in everything she ate, fiber gummies, tons of fruits and vegetables. But it didn't help. At the time I didn't know which way was up or down because I was dealing with Maggie at home on oxygen and, well, it was rough time. I was also trying to potty train Mary Lawrence and getting so frustrated because she just couldn't get it (now we know why).

Over the next few months, it didn't get any better. We tried laxatives, suppositories, yogurt, and enemas to no avail but just could not get her "regular".  Several calls to the nurse and their advice unfortunately yielded no good results. We finally took her to the doctor in March and have been three times in the past month. We were shocked that first visit when he told us that her constipation had led her to be scared to go and therefore she was trying not to go. He said that children who go through traumatic experiences (mother hospitalized, sister in NICU - check!) often feel they need to control something in their lives. And the only two things children can control are eating and pooping. (I told him I was unfortunate to be experiencing both of those things right now). He told us that many toddler go through this and the worst thing we could do is potty train right now because she will associate it with bad experiences and be in therapy until she's ten. Great.

So the doctor told us to give her miralax every day. He said we would needed to give her just enough to make her bowel  movements soft enough that she won't hurt anymore and be terrified to go. He said that after a few months of good bowel movements she would be ready to potty train. Well, the miralax made her go more often - she'been going about 8 to 10 times a day and bursting out into tears every time - but she didn't feel much better. About three weeks ago she started complainig her tummy hurt all of the time. She was very lethargic and would only want to get on the couch and watch t.v. and hold her tummy and wince in pain. She also began throwing up every other day or so. "Momma, I spilled," she would cry out in the middle of the night.

Back to the doctor we went. He immediately referred us to a GI doctor. But, of course, we couldn't get in for over a week (and it was not the same doctor we had already scheduled for Maggie). Her condition got so bad last weekend that I seriously wanted to take her to the ER, especially after looking up on the web what all her stomach pain could mean. But Justin said no, that would only traumatize her even more. So all weekend I just cried and prayed and felt so guilty for neglecting this poor little child and not getting her the proper attention sooner.

Anyway, Maggie's GI appointment was at 10:30 this past Wednesday. Even though I called every day asking if this same doctor could also see Mary Lawrence since we were already going to be there, they kept telling me no, that he had a three month waiting list and he was only seeing Maggie on his surgery day as a favor to her doctor. But I said a prayer that maybe, just maybe he would take pity on Mary Lawrence and help her anyway.

Well, he did! I think after telling him all of Maggie's medical history - the lack of fluid, the bed rest, the placental abruption- he was so moved by her story and all we have been through. He commented that he couldn't believe that not only can she breathe but also that her arms and legs formed normally without any fluid. He said, "you know, they usually don't let women continue pregnancies lihe that." It was so sweet - he said it was the most inspiring story he had ever heard. And so he obviously had compassion on us. So during our discussion about Maggie, when Mary Lawrence started grunting in pain and grabbing her stomach and collasped to the floor like she often does, he scooped her up and began asking me a ton of questions about her.  I told him I didn't know what child I should be more worried about - one child was practically starving and the other child's bowel system could be seriously messed up.

He was so kind and gentle to both of my children as he examined them. And he gave me game plans for both of them. He is going to fit Mary Lawrence in next week to check her more thoroughly and check Maggie's weight to see if she is gaining. I just wanted to give him a huge hug! I really started crying when we got back to the car after our 3 hour appointment because I finally felt like ML was getting the proper care she needed.

So here is the game plan for both of them:

Maggie: he doesn't think anything is seriously wrong with her organs. Her reflux is awful and so he prescribed an antibiotic to help in addition to her prevacid which is sort of a new treatment for severe reflux (the pharmacist had never even heard of it). He also thinks she needs to stay on this really pure, broken down formula because she probably has a milk protein allergy. While there I met with his dietitian and his speech (feeding) therapist and will go back there for more therapy since he can get us in sooner. He will monitor her closely but said that if babies don't grow at the proper rate their brains don't develop properly). So if he doesn't see good results, she will  need a GTube. But right now that's not a serious risk.

Mary Lawrence: She has an obstruction of compacted bowel that is causing pain and vomiting and it needs to come out. If not, it can very serious. He told us to give her about 8 times as much miralax as we are giving her in order to get her all "cleared out.' So basically the next week is going to be horrific for her. I have been trying to prepare her for what's to come and I know she probably will be traumatized even more. But the doctor says if the compacted stuff doesn't come out they will have to do more invasive measures. I didn't ask what that meant.

So if you have seen us out recently or in the near future and wonder why Mary Lawrence has such odd behavior, now you know. I am trying to keep it together, too. I told Justin that I feel like I constantly smell like poo poo, and my house smells like it, and at least twice a day I find it somewhere on my clothes or body. Hopefully we can get this resolved soon and I just pray that the poor baby will not be traumatized to go to the bathroom for the rest of her life.

So the lesson here is: don't ignore a minor issue as it can quickly deteriorate, don't hope that it will go away on it's own, don't neglect your older children when you bring home a new baby, don't pressure potty training when they are not ready, and don't trust that your pediatrician's recommendations for solving the problem will eventually work if you keep trying them. I have learned that if the problem has not drastically changing in a matter of hours or days, call back and keep calling until someone takes your child's problem seriously. Otherwise it's just a huge mess. Literally.


  1. Oh, poor thing. Both of my girls had terrible problems with that too- and it took years to get them on miralax. I want to go and have a little talk with all of our previous drs. Praying she gets all clear soon! Maybe she can have something to look forward to at the end of this week- like a new princess dress or whatever makes her happy! And I pray for strength for you! I know you need it. You will make it through this. It may get ugly and stinky sometimes, but you will do it. It is so hard to figure out their correct dose of miralax. It took me months, but now we know 2t every morning and they are good to go- pun totally intended. :) I hope this week flies by and that she'll somehow not realize how horrible it is. Maybe she start feeling better and that will be enough for her to get through this week. Also- we waited to potty train b/c we moved out of state. It was so good to wait until she was ready- plus it is great if they still wear diapers so you don't have to rush to the bathroom when you are out somewhere with sweet Maggie. Who cares how long she wears diapers. It is no big deal! You will look back on potty training and laugh. It is crazy how we are sort of pressured to do that and quickly. My second daughter potty trained herself before she was 2! Crazy! Maybe Maggie will treat you to that! For now, hang in there and you are doing awesome! Those are two lucky girls!!

  2. Alex has the same problem, too, and it is the most pitiful thing ever. After trying fiber cookies "prescribed" by the pediatrician, miralax (which he hated), fruits, vegetables, and obscene amounts of prune juice, all to no avail, we stopped giving him milk. Problem solved. If we give him so much as half a cup of milk, he won't "go" for 2-3 days. We have switched to vanilla soy milk (which he loves) and he hasn't had a problem since. It seems he has developed a milk allergy because this didn't used to be a problem. Just wondered if ML has any problems with milk...Glad to hear you seem to have a solution though!