Wednesday, February 28, 2007

Through Your Eyes on Dr. Phil

I have to admit, I am not normally a Dr. Phil fan. I was in the beginning, but his views about ADHD (or the lack of its existence) had driven me away.

Today, on one of my groups, someone mentioned that he was going to have triplets on the show that were born premature. I set it on my DVR and figured I would watch it later. I fully expected the show to be all about "miracles" but instead it was the opposite. I just finished watching it. I spent the entire show in tears.

The triplets (Zoe, Emma and Sophie) were born at 25 weeks. They are blind due to ROP and deaf due to the ototoxic meds used while they were in the NICU. Although the theme of the show was how their condition has impacted their mom and her husband (mom and bio dad divorced after the girls were born and mom re-married), Mom was quoted as saying, "I thought they would come out of the NICU unscathed."

A documentary was made about the girls in hopes of raising awareness about deaf/blind children and to raise money so the girls could get the much needed services that their parents can't afford.

You can check out the movie here. and read about the triplets here.

Sunday, February 25, 2007

In The Trenches

To those who have been critical by saying that my blog is "toxic to new parents", I give you Karen.

Knowledge is power.

Knowledge does not take away hope.


Many of us have been exactly where you are. I hope you can feel us with you.


Saturday, February 24, 2007

A Few More Grey Hairs

Thanks for the jinx Clark!

While eating dinner out last night, I gave my little guy (almost 10 months old) the soft inside of a bread stick. He gummed (yes-still no teeth) it down so I gave him a little bit more. He ended up gulping down 3 or 4 bites when I decided to feed him some baby food. 2 spoonfuls in and he chokes. This is nothing new to us since he still has severe reflux (this is my 35 weeker-worse reflux than the 25 weeeker, by far). But, when he didn't stop choking I got a little concerned.

He finally stopped flailing his arms and kicking his legs long enough to relax those throat muscles. Hubby was satisfied that all was normal. But, I was holding him. I could feel his chest being sucked in every few breaths. Then the coughing started again. I took him into the bathroom since we now had an audience and my daughter's anxiety was kicking into high gear. The coughing didn't stop. Every few breaths he would cough. I laid him across my arm and turned him a little bit upside down and hit his back. Nothing. Did it again. Still nothing. I'm not sure what I was expecting to come flying out of his mouth since the baby food was stage 1 but his wheezing was telling me that something was stuck.

After a few minutes of him crying and coughing in the bathroom I noticed that the skin around his upper lip was blue. He laid his head down on my shoulder and fell asleep. Hmmm, not good. Time to go get hubby. As I leave the bathroom he picks his head up and starts coughing. That lasted a minute and it all stopped. Yeah, baby all better.

Not so fast optimistic mommy!

We get back to the table and it all starts again. This time there was a blue ring around his whole mouth. Geesh.. where is Clark Bartram when you need him?

Turned him over again. Nothing.

Ok, either I'm going to rush him to the hospital or I'm going to try to flush out the pipes. I know, I know, never give any liquids to a choking baby with reflux. But, I did it anyway.

A few sips of his bottle and he coughs up this huge collection of slimy bread balls! He pinked right back up and finished his bottle.

Whew! All is right with the world.

Nope. Daughter is still (a day later) hysterical and her OCD is back being out of control.

Tuesday, February 20, 2007

I refuse to give up!

And this is why.,2933,252878,00.html

Fox news reported on our newest "miracle" and quoted the doctor as saying...

The baby has experienced respiratory problems, a very mild brain hemorrhage and some digestive problems, but none of the health concerns are expected to pose long-term problems, her doctors said.

"We can deal with lungs and things like that but, of course, the brain is the most important," Dr. Paul Fassbach, who has cared for Amillia since her second day, said by phone Monday. "But her prognosis is excellent."


I've gone through quite a few emotions since this story hit the airwaves. I still can't sort them all out.

After a rough month, I was almost on "E". But, thanks to the public misconceptions that were reinforced by the media and those doctors, my tank is full again and I'm back on the road.

Saturday, February 17, 2007

Why I feel the need to...

Why do I feel the need to speak out?

Bear with me everyone, this is going to be a long blog and one that, hopefully, will allow you all to understand me a little better.

I was alerted to a recent thread on a popular website, where I was mentioned.

The topic of the thread was "knowing what u know now, would you do anything differently regarding NICU care?" I was instantly hooked, based on the title. My first thought was that it is nice to see other parents being proactive toward future care. This is not the case. A person posted that they would not resuscitate their preemie before a certain gestation. This was not received well. Then someone linked my blog (thank you, who ever you are) and quoted the post where Helen was listing issues relating to prematurity. This opened the flood gates for other parents to harshly criticize the author and then both myself (TPE-the preemie experiment) and Helen.

"My opinion about TPE and Helen Harrison is that they are VERY bitter women who are still angry with the hand they were dealt. Both rally behind a viel of "education" about the "hidden" risks of prematurity but I get the feeling from reading their writings that they just don't want to admit and acknowledge the truth that there are many, many good outcomes... because they consider the lives their children lead to be terrible."

After reading this I decided it was time to tell the story of how I was able to see the importance of accurate information given to parents and the parents right to choose.

One day a friend of mine asked me to join her for lunch. She was meeting a first time client and thought that her and I would like to meet since the client's daughter was born early. My friend suggested that I bring my daughter (who was around 2 at the time) so the 2 kids could play together.

When we arrived I was surprised to see the client was without her daughter. As we started talking we realized that we had a lot in common. Both of our girls were born at 25 weeks, both of us had premature rupture of membranes and surprisingly, both of us delivered at the same hospital (this was odd because the hospital was 90 minutes away).

I opened my trap and started spouting off about how I was frustrated with some preemie moms who say that they wish their baby had not survived. I told her about how the neo at the first hospital told me that I had the right to not resuscitate our daughter. I proudly told her how I flipped out on the doc and that I was then transfered to the 2nd hospital (the same hospital she delivered at) and how they told me that their interest was in saving my baby, and my care came 2nd (I haven't gotten into this much but I will at a later date). I must have gone on for 15 minutes about saving preemies and how mine was such a miracle. I was so immersed in my own glory that it took me a minute to realize that "the client" was looking very angry. I shut my mouth long enough for her to collect her thoughts. She then said,

"I wish someone had given me the choice."

She went on to tell me that the doctors at the hospital told her that her "job" was to endure the time she needed to in order to save her baby (her water had broken and she was admitted). Even though she was telling them that she wasn't feeling good, they ignored her. (this also happened to me at the same hospital-a story I will tell another time). She asked them about having another baby if hers did not make it but they just kept on telling her that her baby would survive. She asked them about statistics but they just kept on telling her that she needed to relax (again-also happened to me at the same hospital).

The time finally came when her daughter needed to be born (due to infection-secondary to PROM). She lost a lot of blood during the c-section and ended up losing her uterus. Her daughter did survive but was massively affected by her early birth.

Again she said, "I wish they had given me the choice. I wouldn't have agreed to all of the meds to stop labor. My daughter suffers so much. I couldn't bring her here today because there is no room for her equipment at this restaurant. I can't even have more children."

My world changed that day. I was able to see "the other side".

The parents MUST have the right to choose! The parents MUST be given information; the good, the bad and the ugly. I realize this is an uphill battle because so much of the information that is out there is either outdated or conflicting. But we all MUST work towards a solution.

By working together (parents, NICU staff, media, researchers, etc) we can create a NICU environment that respects everyone. The parents will be informed and the babies will receive treatment that is constantly evaluated and updated.

I know it sounds impossible. I'm not willing to give up yet though.

If what we post about here is hard for you to read, we understand. But, don't judge someone based on a life that they live and you do not.

I am not bitter. I am passionate.

Wednesday, February 14, 2007

At age 2...

Since so much emphasis is put on clinic follow up studies that only track preemies through age 2, I thought it would be interesting to post about my daughter at age 2. The following was written on her clinic discharge sheet.

"Premature girl born at 25.5 weeks gestation, 805 grams, 13" long. Current age is 24.1 months. There is no sign of any gross motor delay and only a slight fine motor delay. Although speech is limited, child uses sign language to communicate and therefore was able to demonstrate adequate language skills. Parents report that child is hardly sick with any colds. Parents also report child has chronic constipation. Information was given and parents were instructed to increase water and fruit."

No further therapy recommended. No further follow up is needed."

Ah, what a nice age that was. It's true, she was hardly sick. Many doctors commented on how healthy she appeared to be. She could not put 2 words together either by speaking or signing. I still wonder how they felt she had adequate language skills. The constipation comment still kills me to this day. I found it quite interesting that the constipation issue started in the NICU (where she was fed breatmilk and formula) but the clinic felt that it was our fault and instructed us to give more water and fruit!

Age 3...
diagnosed with severe sensory integration dysfunction,
still could not put 2 words together
diagnosed with severe anxiety disorder
diagnosed with PDD-Nos
self harming behavior
could barely bend legs because of CP
had bilateral hernia repair
started on MiraLAX for constipation

Age 4...
1 week before turning 4 she had her first seizure
could now speak on an 8 year old level
lost ability to walk long distances because of fatigue
sensory issues worsened
began meds for anxiety disorder but it only caused rages-she tried to pull out her eyeball
had many procedures to asses reflux
diagnosed with failure to thrive due to weight
diagnosed with GERD
chronic sinus infections

Age 5...
could not function in kindergarten due to fine motor delay
sensory issues worsened

Age 6...
finally got a diagnosis of CP
had tonsils and adenoids removed to open airway
outsiders began noticing her social differences

Age 7...
had so many GI procedures that I lost count
multiple MRI's to determine other possible causes of leg pain
tried to kill herself
self harming behavior
yellow adult teeth

Age 8...
diagnosed with OCD
started on meds again for anxiety disorder
socially is an outcast
will be getting palatal expander

I'm sure I have forgotten some.

Age 2 was looking pretty good!

I would love to hear from other preemie parents as to what issues were present at age 2 and which ones did not show up until later.

Saturday, February 10, 2007

The Financial Impact of Having (and Raising) a Preemie

The financial impact started very early on for us. My water broke at 23.0 weeks. We were told that I would probably go into labor within 24 hours so hubby took a leave of absence to stay with me in the hospital. One day turned into the next. I made it to 25.5 weeks. Hubby's short leave of absence turned into a month off of work without pay.

Paige spent 78 days in the NICU. Between my hospital bill and hers, the total was just short of $600,000. We had insurance so it was paid, right? Not all of it. Insurance wouldn't pay for any medicine that was not used as approved. Geesh.. what medicine was back then? It was all an experiment and meds were used off label.

Did the hospital work with us on the remaining $100,000 + bill? Nope. They were quite rude actually. We tried to pay the bill, little by little but it was impossible to do, especially because we were also paying for our own health insurance which cost us $900 a month and we now only had one salary. Does anyone know what it's like to eat Spagettios every day for months on end? I do.

After a year we filed bankruptcy.

Over the next few years our health insurance went up. We couldn't change carriers because Paige was uninsurable. We paid for therapies, specialists, medicines, leg braces and surgeries mostly out of pocket.

Turn to the government for help you say?? We tried that but we were turned down because hubby makes too much money and they don't take into account all that we pay out of pocket. When I explained this to the nice woman on the phone she told me that the best thing that we could do would be to get a divorce and then I could file the claim as a single parent. She told me that's what a lot of parents have to do when they have children with disabilities because the state only looks at gross pay. We were also told that every state is different and that we should consider moving to another state.

Neither of those options were acceptable to us.

Hubby finally got a job with a large corporation and we were able to get insurance through his work. Although it's a great policy, Paige's medical care still is a financial burden. When you add up all of the copays for specialists, our portion of hospital bills, our portion of medical tests, medicines, psychologist, psychiatrist, etc. there is nothing left over from hubby's pay. He ended up being transferred but unfortunately we went from one state that couldn't help, to another one.

We are not the only family that is suffering, financially, because of prematurity. There are many parents that I come in contact with that worry what the future will hold. How can we save any money when we live paycheck to paycheck?

Now, before everyone starts commenting that I am whining because my daughter was saved and now we are poor, let me say that couldn't be farther from the truth. My point is simply that prematurity affects more than just the child.

Wednesday, February 7, 2007

"Baby At Risk" A must read!!

"Baby at Risk: The Uncertain Legacies of Medical Miracles for Babies, Families, and Society by Ruth Levy Guyer

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I highly recommend this book.

Ms. Guyer takes the reader on a journey, through time to learn how NICU's got their start, through the lives of NICU patients (preemies and high risk babies) and their parents and through the eyes of doctors and nurses who care for these patients.

She does a wonderful job of explaining laws and how they shape the NICU's of today. I was shocked at what I learned.

I have to admit that I also learned a lot more about neonatologists, intensivists and NICU nurses and how tough their job truly is.

This book is very honest and thought provoking. I hope it will find its way into the hands of all doctors, nurses, med students and potential parents. I also hope that people will take this new found knowledge and put it to good use.

**Side note... when I sat down to write this post I had every intention of writing a detailed review. After putting more thought into it, I decided that it would be better if everyone read the book without knowing much more than I wrote. I think if potential readers knew some of the topics that are covered, they may choose not to read it and then I wouldn't be doing it justice. Everyone, please be open minded when getting through the book. Your views may be different than the ones expressed in the book but they deserve to be given attention.

What a bonus to see some pictures of my "online friends".

After reading the book, please come back and tell me what you thought.

Sunday, February 4, 2007

Invisible issues related to prematurity....

Wheelchairs, glasses, feeding tubes, leg braces... all are outward signs of prematurity . If you need services at school, you'll get them. If you go to the doctor, they listen to what you have to say. Neighbors understand why you are tired. Family offers to help.

Advances in medicine and interventions have lowered the number of children who need those devices. For this I am thankful. My daughter does not (currently) need any of the above (although she did wear leg braces for a few years).

But, there is another side to prematurity... Invisible issues. They are clear as day to us parents and the preemies that experience them but invisible to the outside world and largely ignored by the medical community.

anxiety disorders
sensory integration issues
psychiatric issues
behavior issues
fine motor delays
feeding issues
weight and growth issues
reflux issues
autism spectrum disorders
coordination issues
sleep issues
severe constipation

Over the years I have heard many parents say that they were blamed for the above issues.

I am also one of those parents who was blamed. For a brief moment I believed it. (I must not be feeding her enough, I must be babying her, I am not strict enough, etc) But, as I started talking to other parents I realized that other preemies were suffering with the same issues.

If you are thinking, "these issues are not that bad" then you have never lived with a very young child who stabbed herself because her "thoughts" told her to. You have never lived with a child who has such severe constipation that, despite adult doses of Miralax, can still tear herself bloody when she has a bowel movement. You have never lived with a child who will drop to the floor and scream when hearing a voice on the loudspeaker. You have never lived with a child who will cry because she is so tired that she cannot run with the other children.

These invisible issues are what make me continue to fight to get the word out. Why should any parent feel responsible, like I did, when the above issues are actually common to preemies? Why should I stay quiet and let the doctors feel that preemies are fine after age 2? How will conditions improve? How do we expect the doctors to know?

I've been told that my posts sound angry. Since true emotion can be misunderstood, I want to be very clear. I am not angry. I was the one who chose to have the doctors save my daughter. As it stands right now, I cannot look at my daughter and honestly say that I would choose differently.

Frustration is the emotion that I feel. Frustration that misinformation is still the norm when it comes to preemies. I feel an incredible sense of duty to be a voice for future preemies and their parents. I am thankful that I am not alone in this passion.