Cerebral Hemodynamic Changes During Intensive Care of Preterm Infants

Interesting article in the October 17th issue of Pediatrics.

http://pediatrics.aappublications.org/cgi/content/abstract/peds.2008-0768v1?papetoc

I only have access to the abstract and I never know what I can reproduce legally so here is a snippet of the article...

OBJECTIVES. The objectives of this study were to examine the circulatory changes experienced by the immature systemic and cerebral circulations during routine events in the critical care of preterm infants and to identify clinical factors that are associated with greater hemodynamic-oxygenation changes during these events.

CONCLUSIONS. Routine caregiving procedures in critically ill preterm infants are associated with major circulatory fluctuations that are clinically underappreciated and underdetected by current bedside monitoring. Our data underscore the importance of continuous cerebral hemodynamic monitoring in critically ill preterm infants.

Eye Doc Update

Paige had stage 2+ ROP which was diagnosed while she was still in the NICU. She was tested frequently and it never progressed to stage 3 and she never needed surgery. Upon discharge she was tested again, which showed she was still stage 2+.

A few weeks after discharge she was tested again and it was gone. Completely resolved.

Jump ahead to age 6. We moved to a state that requires all children to have a current eye exam before starting kindy. We saw an optometrist who was freaked out by what she saw. She scared the heck out of us, gave Paige glasses, and sent us on our way.

We ended up seeing an ophthalmologist who specialized in children with ROP. He said that she had scar tissue from her ROP, which may be what scared the optometrist. He felt that there was no reason she needed to wear the glasses at such a young age because her eyes were not that bad.

The following year (age 7) he saw a change in her vision but still felt that she did not need glasses. Paige wasn't happy about that because she could not see distance. She started wearing her old glasses (from the optometrist) on and off.

Age 8... she was determined to get glasses. And she did. The opthamologist felt that the change in her vision was a bit concerning but was confident that it was not due to her ROP. He felt that it was genetic. (only my MIL had glasses at a young age)

Today was her annual check up. Her vision changed once again. (we knew this because Paige has been saying, for months, that her vision has changed) I talked to the doc in detail and asked a bunch of questions (thank you Sarah). He agreed that her vision change is more than usual but still felt that it was due to genetics and not her prematurity. I no longer agree. I asked him about her scar tissue. He agreed that she had scar tissue due to the ROP and that it would prevent her from ever seeing 20/20. But he felt that her scar tissue has nothing to do with her nearsightedness. He said that ROP damage usually only affects close vision. That is absolutely false.

He gave me that smile. Something that I cannot stand. If the smile could talk it would say something like, "oh, you shouldn't worry your self with all of these big medical terms. just trust me". I hate the smile!! He then turned and said something like, "She was such a wee baby and her eyes look great for being such a wee baby. Someone upstairs was looking out for her." Ok, those of you who know me and have been paying attention on this blog know that I also hate that statement!!

I asked him about her risk for retinal detachment to which he replied, "Well, there is a pretty good risk there based on her ROP and her vision change. She should never play any contact sports. Soccer, basketball, baseball, softball, volleyball... all out of the question for her."

Ummm, when were you planning on telling me this? If I hadn't asked, you wouldn't have told me this! You were half out of the office when I stalled you with my questions!! ARGH!!

I obviously didn't say that to him but I sure did flash him my *smile*. I don't think I have to tell you all what my smile would have said if it could talk.

Paige was not happy about getting her eyes dilated but she is happy that she'll be able to see better again.

When we left the office she chuckled about the docs' statement and said something like, "I thought he meant that someone on the floor above his office was looking out for me."

I love her attitude. I love her spirit!

"How Come...?"

When Paige starts a sentence with those 2 words I never know what's going to follow. I do know, however, that it will be something this is hurting her deeply.

"How come my legs work differently than other kids?"
"How come I have pain and the doctor didn't believe me?"
"How come I have OCD?"
"How come the kids don't want to be my friend?"
"How come I lived but other babies died?"

As soon as she started talking in full sentences, the "how come?" questions started. They are never simple ones either.

On Sunday, from the backseat, came another one, "How come I'm the kid who never gets invited to birthday parties?"

I tried to make her feel better, forgetting who I was dealing with in the backseat. "Oh honey, it is one of the drawbacks when you are homeschooled. You aren't around such a large group of kids like you are in public school."

It didn't work.

"But Mom, how come I wasn't invited to parties even when I was in public school?"

Without missing a beat hubby responded, "Ya know, as you get older the number of kids that get invited to parties gets smaller. When you are little the parties are big and the whole class gets invited. But when you are older you only invite a few of your best friends to your party."

"But how come I am NEVER invited?"

She then got sidetracked by her brother and the conversation was over.

For her.

Here we are, 3 days later and it's still eating me alive. She is right, she is never invited to parties.

This morning hubby and I were talking about it while he was getting dressed for work. When I asked, "How can I fix this?" he turned around and gave me "the look". No words needed.

Preemie After Preemie

During a recent discussion an anonymous person wrote:

"I'm not trying to be mean, but how about starting with not having another child since you obviously can't afford it?"

I replied:

"You may be shocked by what I'm about to say but... you are right.

Hubby and I did not plan on having more kids. Not only were we afraid that we would have another preemie (since we didn't know why my water broke with Paige), we also knew that we couldn't afford to have another child with disabilities. Also, every time we had talked about trying again (a few years after Paige was born), we both knew that we would not be able to live with the guilt if the 2nd child ended up with long term issues secondary to prematurity, just because we wanted more children."

I didn't realize that I'd be opening a can of worms when I posted my reply. But, since it's open already (which is evident by the emails I received), let's discuss.

Should people have more children if they don't know why their previous pregnancy ended early and thus cannot be sure their next child will not be born early?

Before you say that it is a personal decision, think about how it could affect others. Government assistance, health care costs, additional resources needed in school, etc... all ways that ones decision affects others.

The topic of over population (not relating to prematurity) is a hot topic. I found it quite interesting while reading a recent issue of my VegNews Magazine that people are choosing to not have children to control the population. Salon also took a comprehensive look at the issues in their article "Do We Need Population Control?".

I am not trying to start a war here but I do feel that the topic is worthy of discussion. Count to 10 (or higher) before leaving a comment please. And, once again, please leave your deity at the door.

End of Summer Update

I've been absent lately and while I would like nothing more than to say that I am back on track and ready to blog regularly, that would be stretching the truth.

We traveled a lot this summer, really exotic locations. I started a few good books that I've been engrossed in and could not put down. Then we decided to finally finish the bedroom in our basement and worked really hard on cleaning out the storage room so it wouldn't be a fire hazard. Finally, I decided to put myself before the kids and concentrate on my own health.

Then I woke up. It was a nice dream while it lasted. lol

Life is rough at times. Life is good at times. The past few months have been filled with both scenarios.

During the summer we took Paige off of one of her mental health meds for her OCD. The doctor felt that the cognitive behavior therapy was working since she had almost completely stopped her skin picking. And, honestly, I wanted to believe it too. Why wouldn't I want that for my child? To be free of one med and free of oozing scabs all over her body was something we never thought possible. She worked so hard to stop the picking. When we made the decision to homeschool it seemed to lift so much of her anxiety. We are so proud of her.

We knew that there was a chance that her mood would suffer for a few weeks until her body got used to the med being gone. And, suffer it did. But, she still managed to audition for a play, get a role and attend every single practice-all without much anxiety.

When she would get crabby or appear to not be listening to her father and I, we attributed it to everyday stress. When she would explode and have major meltdowns, we guessed that it was the play or even simply typical behavior for a 9 year old. Yes, she wasn't herself but we were blind. Ok, now I'm not sure if we were blind or it was a case of ignoring what was in front of us because we wanted her to be ok.

When she started complaining that she wasn't feeling good at night, for a few nights in a row, we recognized what was happening. The OCD was controlling her again. We had forgotten all about these nightly battles. In the past she would demand that we take her temperature at bedtime because she was convinced that she was sick. When we would refuse to even feel her forehead she would start to meltdown, screaming hysterically. Every night. We all suffered for more than a year until she had started the medicine. Her doc told us that it was the OCD. He was right. On the med, bedtime was wonderful (as long as she has her melatonin).

After she had been off the medicine for about a month she started picking her skin again. She begged me to call the doctor so she could go back on the medicine. I didn't want to give in so quickly. I was still holding onto that hope. It was all about me and I recognize it. We put a rubber band back on her wrist and reminded her to snap it when she felt the urge to pick.

One more week passed by. The rubber band trick was not working. She was miserable. The OCD monster had her in its grip again. It has us all in its grip. The entire house was operating around it. The "thoughts" were back. THE "thoughts". The ones that used to cause us to lock our bedroom door at night.

One morning Paige came running into the living room screaming, "Please call the doctor. I can't take it anymore." The tone and pitch of her voice was something you would expect to hear from someone on fire.

I called the doc, fully expecting to have to fight for her. He didn't want her on the medicine long term and he made that quite clear during every appointment. I sure was shocked when he agreed, without any hesitation, that she needed to be back on it.

It's been a few weeks now and she is doing MUCH better. Gone are the nightly battles. Gone is the counting. Gone are THE "thoughts". She gave in and picked a few mosquito bites but we feel that falls under the realm of normal.

Paige finished her play. 6 performances! Yes, I cried like crazy watching her up there on stage. A real stage!

Homeschooling is going good. I still feel it is the best thing we have ever done for her. Some days are hard but it's getting much easier now that she is back on her meds. I asked her if she missed anything about going to school. Her answer... "I miss getting a new back pack every year." lol

Hubby went away for a week on a business trip. It was only the 2nd time we have ever been apart in the 17 years that we've been together (the first time was 17 years ago). To all of you single parents, I am in awe of you!

So, I'm still here in the blogworld, just have been a bit preoccupied with life. I have been reading everyones comments and feel incredibly proud to be surrounded by so many intelligent, passionate individuals. There was one comment left under the last topic that I will be addressing in my next post. I'm sure it will cause a ripple but I feel it needs to be said. Hopefully I'll be able to post soon, as long as life cooperates.

Thanks everyone!

The Cost of Ongoing Medical Care-Who Pays?

Recently I found a new blog and spent some time reading the back posts. When I came across this post, over at White Coat Rants I felt the need to comment. Specifically it was the following statement made by the blog author that caused me to pause...

"Hospitals seem more and more willing to sue for medical debts. Should hospitals be able to force people into bankruptcy for the medical services that they provide?

A hospital is a business. Without money, the business goes bankrupt.
If you walk into a lawyer’s office, many times you’ll need a retainer or the lawyer won’t take your case. If the retainer runs out and you don’t pay, then the lawyer stops providing services.
If you walk into a supermarket, fill up your basket, and leave without paying, you’ll be arrested for theft.
Stop paying the guy to cut your lawn and you’ll have to do it yourself.
Why do people expect that medical care should be free if they don’t have any money?"

After reading all of the comments, I left one of my own.

"The comments are great and allow everyone to look at the situation from many angles.

I have another one though..

What about the parents of a child born extremely premature? Not only will you have the hospital bill but you may also have on-going medical care for the rest of their lives? What if both parents can’t work because there is no one to take care of the special needs child? Can one person really work enough hours to cover all of the bills?

What if said bills are higher than they would be if they were billed from another department? For example… nursing care is billed at a lower rate in the ICU than it is in the NICU? Is that fair? Should one department be allowed to charge higher even though the same skilled staff is used? Should one department be able to charge higher rates so the revenue will cover less lucrative departments?

What is a person to do? Deny care to their child? Let their child suffer?

Choose not to resuscitate because the parents will not be able to afford the care?"

To which the blog author wrote:

"States have SCHIP programs to help pay for care of children with costly medical problems."

That's when it hit me. People actually believe that the above mentioned program is the answer. Please don't head over to White Coat Rants in anger. The blog author seems to honestly feel that the program is working and helping people.

I, on the other hand, know differently. The program varies by state so my experience may not be the same as others have had. But, that system is broken and does not help all who need it. And, this blog author is not alone in their thinking. I can't even begin to count how many times people have assumed that we had Medicaid because of Paige's ongoing care.

When Paige was diagnosed with Epilepsy (4 years old) we were shocked to find out that our health insurance (which we paid for ourselves at over $1,000 per month) had an annual cap of $500 for prescriptions. Between her new meds and the rescue meds we had to have on hand, we blew through our allotted $500 in under 2 months. I had heard of the Katie Beckett waiver so I did some digging. I called our Medicaid office (in our previous state-Illinois) and was told that Illinois did not participate in that program. We were told that there was a similar program but we didn't qualify because my husband made too much money. But, they refused to take into account the ongoing medical bills that we were paying out, or the fact that we were paying for our own health insurance, which left us without enough money to eat at times. (Many of you have already heard me talk about how we lived on Spaghettios during that time)

When I asked (begged actually) the woman to help us she told us to get a divorse and have hubby say that he lives out of our house. This way his salary would not hinder us from getting help. When I told her that I didn't consider that to be a viable option she told me that many people do it. Her second suggestion was to have hubby quit his job and work at Walmart so we would qualify.

Again, I realize that all states are different. But at that time (almost 6 years ago) the total household income dictated whether or not you could qualify for help.

Hubby ended up leaving his job and taking one with a company that offered health insurance. But, that only solved our perscription problem. We still had the cost of the copays for each doc. At the time she had 9 of them! Add that to the cost of our portion of the ongoing tests and we are right back where we started.

When we moved to our current state of residence, I tried to get help again. Same problem... hubby makes too much money and the state refuses to look at how much you are paying out in continuing care.

And now we live in one of those states that adds interest to outstanding medical bills and sues if you don't pay.

Do I feel that I am entitled to medical care for my child without having to pay for said services? Of course not! It's a horrible feeling to know that you can't afford your child's medical bills.

But, where is the solution?

Again, I want to stress that I don't feel that the blog author deserves all of us running over there and leaving comments that are not helpful.

I would love to hear from everyone here.

Are you happy with the help you receive from state programs? (I have heard that PA is a good state to live in)

Do you have any suggestions for programs that you were able to qualify for and have been helpful?

How do you pay for the ongoing medical bills??

How about your NICU bill? Did insurance cover it for you? (Ours did not cover any meds used off label, which left us with a $75,000 pharmacy bill)

Full Potential

A few months back Chris (Chris and Vic) brought up the topic of "living up to ones full potential". I instantly thought that it would make a great, thought provoking, post. I settled in with my laptop, fully expecting to bang out the words with ease.

"Let them be who they are and find their way. They'll decide what their own full potential is and follow the path." It sounded so simple as I was writing it. Then I stopped to think about what I was saying. Could I really just let Paige follow her own path? Is that what a parent should do?

Does everyone have the ability to realize their own full potential, without direction?

I saved the post and decided to pick it back up again a few weeks later. I stared at the screen in hopes of continuing the post I had started. But, my feelings on the topic had changed. When Paige came home from the NICU I used to say, "I don't care if she shovels sh*t for a living, as long as she is happy." Did I think, back then, that shoveling manure was in her future? Would that be all she would be capable of doing?

So, does ones abilities dictate their full potential?

Life took over and I never finished the post. It wasn't until I received an email, from someone that I met a year ago in the blogworld, that opened my eyes to my part on the path to Paige's full potential. This person is an accomplished specialist and a former preemie. His long term issues are not visible in daily life, for the most part. But, he was embarking on a personal goal in a sport that is rough and he was concerned about his ability in one area, due to one lingering preemie issue. I was so proud of him for trying something so difficult. He never gave up and his perseverance paid off.

In the comments section of a recent post I mentioned that I recently made a pretty big parenting mistake. Paige asked if she could take ballet again. She was in it for a few years when she was 4-5 years old. It was fun watching her dance around and quite the tear jerker for hubby and I during her recital. The year after we moved we enrolled her in a ballet/tap group. She was older now and her limits were quite apparent. She could not properly stretch, nor could dance without pain. She asked to stop and we had no problems agreeing.

Well, jump ahead to the end of last month. Paige asked if she could take ballet again. While she was asking me she was dancing around looking so sweet. But, her limits are really apparent now. She cannot stretch her legs and the tightness in her muscles causes her pain, even when she is not doing anything strenuous like ballet. The kids she would be in class with would be much further along than her. She started begging to take ballet.

(here comes the huge parenting mistake) I told her no. *I* knew that it would cause her pain, both physically and mentally. *I* knew that she wouldn't be able to keep up. *I* knew that she would have to drop out of the class.

But, it wasn't until I received the above mentioned email that I realized my mistake. Who was I to dictate what Paige was capable of doing? Even though I was trying to protect her, was that the best possible way of handling it? I no longer think so.

I learned a lesson, thanks to one special person sharing his concerns and then his triumphs. I still can't decide how I feel about Paige living up to her full potential. I still can't fathom what her full potential may be.

I do know this though... I need to make sure I am not the one who limits the possibilities of what her full potential may be.

Thanks Chris for always making me think.

Thanks LS for sharing your news with me. There was a lesson for me to learn and you opened my eyes.