Mommy, I need a wheelchair

Being honest here... I don't know what to do when Paige utters this statement.

Paige has very mild CP. You would not know it by watching her on the playground. She runs and swings and can maneuver the monkey bars like a pro. When she is with her peers, the CP is a little more noticeable. Nonetheless, most people still cannot tell.

Does that mean that she does not have pain?

Paige started telling docs that her legs were hurting as soon as she could form sentences. The first neurologist patted her on the head and told her that her legs really don't hurt. He said that she could climb up on the exam table so she must be fine. She was so sad. (yes, we fired that neuro) Other neuro's admitted that her legs were very tight but she must not be in any pain because she was so active.

Yet another case of "she looks good to me."

When we moved we started seeing a new neurologist (for her epilepsy). During the very first visit, and during the first 5 minutes of the appointment, she told him that her legs hurt. He listened. He told us it was because she has CP. That was the first time she was diagnosed. Age 6. This neuro put her on pain meds, which Paige took until they didn't seem to work anymore. We let her decide and she chose to try to handle the pain and stop the meds, mainly due to the side effects and the fact that they didn't work.

She has never been able to walk long distances. She only has short bursts of energy. She has been asking for a wheelchair for about a year. Her neuro has even offered to let her out of certain activities (mainly long distance running) in physical education class. I have never agreed to any of it.

I'm afraid she will give up.

Recently we were headed to the mall. We knew we were going to be there for a few hours. Paige was very upset and begged for a wheelchair. When we go grocery shopping she sits in the big part of the cart. But there are no carts at the mall. I told her that we would take breaks. She was so sad. "But Mommy, I NEED a wheelchair!" I think she is in a growth spurt because her legs are even tighter than they have been before. She has pain daily.

Hubby and I gave in.

Hubby pushed her while I pushed her brother in the stroller.

I held back tears.

Paige was the happiest I had seen her in the longest time. Every so often she would get down and run around. When her legs got tired, she got back in the wheelchair.

All was good. Then we ran into one of the secretaries from her school. The look on her face said it all. "What the heck is she doing in a wheelchair. She looks fine to me."

At the end of our trip, she thanked us for the wheelchair and asked us if she could get one of her own. She wants purple.

I'm not sure why I'm having a hard time with this. Maybe because I know what people will be thinking (about hubby and I-not what they will think of the wheelchair). Maybe because I am so afraid she will give up. Maybe because I am still hoping that all of the lasting effects of prematurity will just go away.

I don't even understand how she can have so much pain. I've watched her run around the playground... she looks good to me too.

A reader asked...

A comment was left under the previous post that I feel would be better answered if I started a new post.

Anna wrote:

"This is a great post... and I am happy for your success at carrying your son to 35-4.

But I am wondering, you often talk about your advocacy- and I am wondering, what is it for? I know you wish to educate the masses about the real side of prematurity, and I respect that, I do. But what end purpose is in sight? The awareness you deserve? The end to biased coverage of "miracles." Convincing parents not to resuscitate their preemies? You've mentioned Helen Harrison as a "Pioneer"- of what? Shouldn't the objective be preventing prematurity- and isn't that what the March of Dimes is for? And why(yes, I've read through everyting in your blog)- do you/your readers dislike the ambassador families w/ good outcomes.

Please don't take this post as a flame against you or your movement- it isn't. It's not that I disagree, it's that I don't understand.

I guess I just think the parents should have the final say in saving their preemie.-Anna"

Hi Anna,

Thank you so much for the manner in which you asked your questions. Most of your questions have been asked before, not usually as nicely. So, thank you.

Below are the items that I feel need to be changed, with regard to neonatology and the media...

To neonatologists:

Stop telling parents that their preemie will catch up by age 2. This is simply not true for many kids.

Start being honest about the LONG term issues related to prematurity.

Stop using studies that ONLY follow preemies until they reach age 2 or 3.

Start conducting studies that follow preemies through elementary school and beyond.

Start giving parents the option for pallative care.

To the media:

Stop portraying the birth of extremely low birthweight children as "normal".

Start featuring stories of older preemies, and their families, who are living with the day to day issues related to prematurity.

I have been on various preemie groups for 8 years. For many, they've been told that their preemie will catch up by age 2, only to be slapped with reality when their child's 2nd year passes and they are either behind their peers or very different than their peers.

In both the media and medicine, the long term issues that preemies face are largely ignored. On groups geared towards older preemies, a parent will join and you can almost always guess what questions they will be asking. It will either revolve around severe behavior, social differences or sensory issues. Parents are wondering what they did wrong, only to hear that they are not alone and their child's issues are, in fact, extremely common.

As far as MOD goes, they have brought a lot of attention to prematurity. And, I do not dislike the Ambassador families (we were one of them) with good outcomes. Where my problem lies is in the age of the ambassadors they choose. Preemie babies should not be used. How can anyone say that a preemie baby is "normal"? They are too young. The media prints their stories and shows them as coming out of prematurity unscathed. When older children are used, the parents are either not allowed to be honest (because it seems depressing) or the parents choose not to be honest (because they are dealing with their own emotions). It all relates back to how preemies are portrayed.

Helen... I have nothing but the utmost admiration for her. She has been talking about the "hard to talk about" subjects within prematurity for years. I first learned of her while Paige was in the NICU. Hubby and I were given her book and it was comforting to be able to read about all of the subjects that the docs were trying to shield us from. Docs would use terms like NEC and PVL and then, in the same sentence, say "you don't need to understand this now. We'll let you know if you need to make any decisions." We would open Helen's book and become educated about the problems that OUR child was experiencing. We could then have level discussion with the doctors and make our own decisions on care.

Once I joined some on line preemie groups I was thrilled to see Helen posting. She would answer questions and post the abstract to studies that were being published. I learned so much. Some people were not as receptive. I never understood their complaints. Parents would scream and call her negative and say things like, "she just doesn't want any preemie to be saved." I would sit quietly and watch it all unfold. I never spoke up.

As Paige got older and we got a really good handle on what long term issues we were facing, I started speaking up when parents were rude. I was so afraid that Helen would choose to not be a part of the lists. I valued the information she was giving and it had a direct positive impact on the way I was able to care for my child. Due to speaking up, there were a few parents who took out their frustration on me. (I learned to grow thick skin, very quickly-lol) A few years later one of those parents emailed me privately and apologized for her behavior. Her preemie was older and had many of the long term issues that Helen had reported on.

I am thankful that Helen is vocal about prematurity. Many are helped because of her strength.

Since starting the blog I have received many private emails from people who know me from various on line groups. They do not feel comfortable posting about their child's issues but are glad that we are being open and honest and they now know they are not alone. If it wasn't for Helen speaking up, I would have never found my own voice. I am very grateful.

I am also grateful to all who comment here. You received some comments from other parents when you posted your comment to me. I will be copying them under the comments for this post because I feel they are important.

And, as far as parents having the final say in saving their preemie... I completely agree with you. But, they need accurate and honest information before they can make that decision. I hope to be one of many outlets for that information.

Again Anna, thank you so much for being kind in the way you asked your questions. I wish you much luck in medical school. Please feel free to come back and see us again.

Stacy

Pregnancy After A Preemie

I've written a little about my 2nd pregnancy here.

I know that this subject is the source of so much pain for parents who want more children. I wish I could say that there is some magic pill that can ensure your next pregnancy will be different, but sadly, this isn't the case. There is no magic pill. I will, however, share my story in hopes that the information will help in whatever research someone else is doing.

With my 1st pregnancy (Paige) my water broke at 23.0 weeks. I was coughing (had bronchitis) and felt a huge gush. At the hospital, the fluid was tested and blood was taken but the reason for PROM (premature rupture of membrane) was never found.

In the first few years after Paige was born hubby and I saw specialists that basically told us that the risk was very high that it would happen again, since the cause was never found. Hubby and I could never bring ourselves to have more children. The fear was too great. We have friends who are preemie parents that told us that we should just "go for it" like they did. Unfortunately, I am not the "just go for it" type of person. I felt that it was selfish to bring another child into this world with the risk that he/she may be born premature.

The decision to not have any more children was not an easy one. There were times when I was feeling courageous and hubby was not, and vice versa. I seriously worried about our marriage at times. Then I decided that I wanted to try again. Hubby did not share my desire. At all. I begged. He shared valid concerns and reasons not to have another. I cried.

When one partner has an intense desire to have another baby and the other one does not... it does a number on your sex life!!

Finally (it took years), I made up my mind to live with the fact that I would not be having any more children. It took some time but I was actually ok with the decision.

Then I got pregnant (huge surprise). After I left the doctors office with the news, I immediately went home and started researching (no surprise there). I read up on all of the research and studies (there aren't many) about subsequent pregnancies after having a preemie. I felt more scared than I had ever felt in my life.

The first thing I did was join a group designed around being pregnant after having a preemie. It was very helpful. Even if you are thinking about having another baby, the information is wonderful.

http://health.groups.yahoo.com/group/pppg/?yguid=215225136

It was on the above mentioned group that I learned about 17alpha Hydroxyprogesterone. (17P)

At my next OB appointment, I brought up my concerns/fears about being pregnant. She told me that there was nothing that could be done to prevent PROM and if I had this child early I shouldn't worry since babies were being saved as early as 21 weeks. I asked her about 17P and she said that I should just stop researching.

Not the doc for me.

My next OB was a high risk doc. She was awesome. She presented the info on 17P at my first visit, before I could even ask her about it. She told me that the shots were showing promise for women who had preterm labor (PTL). Even though I had PROM and not PTL, she felt it was worth a try since I could have had PTL and not even had known it (I did have severe back pain that all docs ignored).

OB also felt that she did not want me to go past 36 weeks due to the risk of uterine rupture. I had a c-section with Paige (at 25.5 weeks) and she felt that my uterus was sewn at a time when it never had a chance to stretch to full term. She was very worried about me rupturing. She told me that she had seen women who ruptured and both the moms and babies died. I was not happy about this. I wanted a full term baby and intended on arguing about this all the way to 38 weeks. Her and I agreed to not talk about it until I got closer.

I had the weekly 17P shots starting around week 16 and continuing through week 34. At the time, the research was showing a 36% reduction in premature births. I was willing to do anything.

I developed gestational diabetes very early. I was able to control it with diet until the end when I needed Glyburide.

Despite keeping my sugar levels under control, I still developed polyhydramnios (too much amniotic fluid). It was discovered around 29 weeks. It was always just barely over the cutoff.

Around the same time I also started PTL and was dilated to 1cm. I was put on bedrest.

Next week PTL continued and I started to dilate more. I was put on Procardia (via pill) to help stop the contractions. The only problem was that it is a blood pressure medicine and I have chronic LOW blood pressure. I was in a constant state of dizziness.

At 32.6 weeks my contractions were still coming at a rate of 6 - 8 of them an hour. My doctor told me that she would be surprised if I made it to 34 weeks. She wanted to schedule my c-section for 34 weeks (due to her fear of uterine rupture). I refused and asked her to do a fetal fibronectin test http://www.fullterm.net/html/fullterm_faqs.htm Basically the test measures the amount of fetal fibronectin in the vagina. If it is not present then the likelihood that you will deliver within 7 - 10 days is less than 1%. She didn't want to do the test because insurance may not pay for it and because there are false positives. Since she was sure I wouldn't make it to 34 weeks, I felt that we had nothing to lose. The test came back negative and she agreed to hold off with scheduling my c-section.

At 34.5 weeks I was dilated to 3 and 25% effaced. My doc was no longer comfortable putting off the c-section. I pleaded my case. My contraction were less and my fluid level was lower. She agreed to wait for a few days.

35.2 weeks I was 4cm. The doctor put her foot down and scheduled my c-section for 2 days later. She ordered an amnio to check his lung function. She said that if his lungs were fine then she would do the c-section. If not then she would put me in the hospital for a few days.

35.4 weeks I went in to the hospital for the amnio. That morning I told her something wasn't right. I was having an odd pain on my right side. It felt like nothing I had ever felt before. It was like a tennis ball was in my uterus, trying to come out my right side. The amnio showed his lungs were not developed. 2 of the 3 markers were not there. OB told me that she wanted to wait for a few days.

I refused. Now remember, I'm the one who was adamant about going to 38 weeks. But, something was not right. At all. I freaked out. My baby needed to come out now and I knew it.

She checked me and I was dilated past 5. Between that and the pain I was feeling, she agreed that it was time.

My precious boy was born at 35.4 weeks weighing 6 lbs 10 oz. He came out screaming, breathing on his own and never needed any oxygen. Hubby and I cried. OB cried. She said, "You did it!" I replied, "We all did it!" It was the most incredible moment of my life. Hearing my son cry, instead of hearing the 30+ medical staff that was trying to save Paige, was so peaceful. I never thought I would have a (almost) full term baby. Never. My son was a surprise pregnancy, one that we never planned. Oh but what a gift!

Oh, and that odd "tennis ball" feeling.... During my tubal (you better believe I had my tubes tied!) my OB leaned over the curtain and said, "That feeling you had that caused you to strongly persuade (she was being nice-I became a bitch and pretty much forced her to do the c-section) me to take him out was your uterus just about to rupture. If we had waited any longer, it wouldn't have been a good outcome."

I cannot tell anyone whether it is a good decision to have another baby after you have a preemie. It's one that is a very personal decision. Other moms have told me that it would be healing. I'm not sure that is the way I would describe it. I'm not sure the way to heal yourself after having a preemie, is by having another baby.

I also am still on the fence about the 17P shots. They are supposed to prevent PTL, which I had for a good portion of my pregnancy.

But, what I can suggest is that you find a doctor that you have a great relationship with. One that will respect your wishes and not dismiss any concerns you may have.

Also, listen to your body. If something does not feel right, get the docs to listen to you. If you are being ignored, change docs!

With my first pregnancy, I was horribly sick, all of the time. I clearly had polyhydramnios with Paige. At 3 months I was measuring the size of 7 months! I clearly had diabetes with that pregnancy too but no one listened. All I ever heard was, "oh, is this your first pregnancy?" or "Welcome to the pains of being pregnant."

And, finally. If your partner does not want more children and it is causing stress in your marriage, get help. The divorce rate in preemie parents is so high and I feel this is one of the causes. Pregnancy after having a preemie is scary for all involved.

If anyone out there has more medical information to share on ways of preventing future preterm births, please share it in the comments section. My story is only about PROM and PTL. There are people out there searching for answers and your story may help.