Dear Dr. Anwar,

October 27, 2007 marked 9 years since the day we met. For my husband and I, it was the scariest day of our life. I was admitted to the hospital, 23 weeks pregnant, with premature rupture of membranes. We were told that, statistically, our baby would be born within 24 hours.



I asked to speak to a neonatologist and you took some time out of your day to visit with us. Based on what I had seen on television and read in magazines about preemies, I fully expected you to walk in and tell us that our baby would be just fine. I was scared and desperately needed to be reassured.



Instead of reassurance, you delivered honesty. You explained that there would be a good chance that our baby would not be able to walk, talk or lead a normal life. You listed other long term issues that she could face, but I was so out of my mind with fear, I don't recall your exact words. You informed us that we had the option of letting the delivery team know that we did not want to have her resuscitated, but instead we could just hold her during her final moments. You told us that you could even help us make those arrangements. You were compassionate and you let us know that you would choose not to resuscitate if it was your own wife in the situation.



Being scared and having an incorrect perception of preemies, I became angry at you. I don't remember my exact words to you but I'm pretty sure they were not pleasant. I let everyone know how unhappy I was, all the way up to the director of the hospital. For this, I am incredibly sorry.



2 days later I was transferred to a hospital with a level 3 NICU. Our daughter, Paige, was born at 25.5 weeks, at 805 grams. She spent 78 days in the NICU and upon discharge, we were told that she had sailed through the NICU and would catch up to her peers by age 2 or 3.



My husband and I thought of you every time Paige reached a milestone. Your words never left us. It was almost as if we felt that we needed to prove you wrong. Paige does walk, she talks and is quite intelligent.



But, her life has been anything but normal. She suffers with an axiety disorder, OCD, has very mild CP, chronic constipation, epilepsy, severe sensory issues, social differences, daily headaches, daily stomach aches, chest pain, leg fatigue and pain in her feet. The long term issues related to prematurity are something that Paige deals with every day of her life. Over the last (almost) 9 years she has endured many medical tests, a few surgeries and constant doctors appointments. It seems to never end.



Until she reached that magical age of 3, we lived under the belief that all would eventually be ok. After all, all of the preemies shown in the media are fine, without any lasting issues from their early birth.



After her third birthday passed we started to think that her issues were our fault. She had behavior issues that were draining us all. Her sensory issues were at their worst and her social differences were becoming more apparent.



It was at this time that your honesty was appreciated. Your words became comforting to us. Remembering that you had said there may be long term issues, helped us to realize that it was not our fault. I began researching and found that long term issues in preemies were actually quite common.



Dr. Anwar, over the years your honesty has become more and more relevant in our life. So many parents were never given the information that you delivered to us 9 years ago. In turn, they are shell shocked when their child passes that magical age of 3 and have not caught up to their peers.



When I became unexpectedly pregnant last year, I made my wishes known that I only wanted my baby to receive comfort care if he was born before 24 weeks. Thankfully I was able to carry our son to 35.4 weeks but I never would have been able to reach that decision had you not given us that choice 9 years ago.



I wanted to take this time to thank you and encourage you to keep being honest. Even if the information you deliver is not well received, it will be important to those parents in the future. Long term issues related to prematurity are real and more parents need to be told.



Respectfully,



Stacy

Ribbon for *Prevention* of Prematurity

I received the following email.... Anyone have any ideas?

"Hi Stacy;

I'm wondering about something - perhaps you would know. . is there a "ribbon" to commemorate prevention of prematurity specifically? I know that the MOD has used pink/blue ribbons for prematurity "awareness". .however, I see from doing some searching that this also commemorates infant loss and a few other things, not specific to prematurity. Would you be interested in launching a "prevent prematurity" ribbon through your sight by asking your list members for suggestions? My thought was "mother of pearl". "

Does anyone know if there is a ribbon specifically to draw awareness to the *prevention* of prematurity?

Keep It Simple

Any time I have heard/read anything from a "professional", with regards to talking to your kids about where babies come from, they always say... keep it simple.

When Paige was 5 she began asking questions. I kept it simple. I only answered questions with a direct response... no elaboration. My simple answers were never good enough for her. All it caused her to do was ask more specific questions. By the time our conversation was done, we had pretty much covered the curriculum in high school health class.

Thankfully I am not, in the least bit, shy about discussing the topic.

But, hubby is not so fortunate. He would have rather that I told her, "It's all magic."

Paige quickly caught on to this and had tons of fun chasing him around the house yelling the word "uterus".

Jump ahead almost 4 years.

Over the weekend Paige and Daddy were cuddling on the couch. I sat down to watch TV and Paige decided that it was my turn to get some cuddles. Daddy started teasing her and made a pouty face because she had left him.

"It's Mommy's turn."

"What about my turn Paige? What am I, chopped liver?"

"No Daddy but Mommy gave birth to me. You just gave the sperm."

Poor Daddy.

He magically disappeared.

Bonding with your preemie-Real World Experience

The article in my previous post has not left my mind. I could think of quite a few ways to complain about it, and all of the harm that article could do, but I've decided that it wouldn't be helpful to any new parents who are scared and need advice.

So here are the questions...

How did all of bond with your preemie?

Did it happen in the NICU or not until your baby was home?

Did your preemie seem to want to bond with you?

Do you have any suggestions on what actually did work to help you feel close to your preemie?

Parenting Magazine-Bonding With Your Preemie

In the current issue of Parenting Magazine you will find an article "Bonding With Your Preemie". I wasn't sure about copyright laws so I am only going to paste a link to the story.

http://www.parenting.com/parenting/article/0,19840,1666646,00.html

Personally, I wonder if the author has even ever stepped one foot into a NICU. If she has, and her suggestions worked for her, clearly she must have had a late term preemie. Not one of those suggestions would have been even remotely possible until Paige was almost ready to go home.

One of the suggestions by the author is to stroke your baby for 15 minutes, 3 x per day. She states that this suggestion is based on a recent study. I have just spent quite a bit of time looking for any study citing this suggestion, but have not been successful. If anyone has found it, please post it. Touching Paige for 15 minutes, while she was still in the NICU, was clearly painful for her. Actually we were told NOT to touch her with stroke like movements. I quickly learned why this was a good suggestion when I forgot the rule and decided to pet her head. I felt horrible and never did it again until she was much older.

Since November is National Prematurity Month, I would have expected much better reporting from a magazine geared towards parents of children!

Please Help Michelle

Every week I receive emails asking for help with a particular issue. Some ask for links, some ask for hope, and some ask for help.

I am going to start a reoccurring post in which I feature one of the emails (always with permission of the author). I ask that all of you who may have an idea, thought, link, positive story, etc leave a comment for the featured parent.

I will only allow positive feedback. Many of you know that I do not shy away from controversial topics and comments. But, when it comes to helping a family that is in need of direction, harsh wording will not help and will not be allowed.

Today, please help Michelle. Her emails to me (with her permission) are in bold. Although this post will be long, I chose not to edit them in fear of omitting an important piece of info.

"Stacy, I am emailing you asking for some guidance. I didn't want to hijack your comments section on an unrelated post. I am trying to find information on Vestibular Sensory Disorder written in lay-person's terms. Until I can absorb some information in regular-speak, I am often unable to comprehend and fathom what in the world the doctors and researchers are talking about. I need, at least, a point of reference, to jump off from.

We are unsure, at this time, if this is an issue, along with something else, that afflicts our preemie. But something is going on, more than just the normal, spoiled 3.

Some days I feel like throwing in the towel. Like today at the surgery center, when none of the other adults in his life were able to go with me. I was just waiting for the staff to call DFACS. I know all the other parents were judging my inability to control my child. He was freaking out about the environment, the hospital bracelet, the BP cuff, which is like flashbacks to NICU, the gown, etc.

Oh, God. The more I write it down, it doesn't really sound like Vestibular the way I understand. I thought Vestibular was affected by your ears and eyes. Oh hell. We may have bigger issues that I realized.

Maybe you or Helen have some resources readily available for one, now, panicking Mom, before I call the Neuro I can't stand and the Ped who abandoned us?"

This is another email from Michelle, giving a little background on her son.


Stacy,
Perhaps I should give you some background on my son, since, though I have been reading you for about 18 mos, I have only commented a handful of times.

My son was ripped from my body at 25 weeks weighing 26 oz. Spent 6 weeks on various ventilators from the high-speed oscillator to the nasal cannula. Had PDA ligation at 11 days old, blah, blah, blah.

My mother (and now, my sister) are both NICU nurses. Despite growing up with a mother who brought home stories, and often having visited her NICU as a young adult, (Prior to HIPPA. Also, these babies often had no one who cared what happened to them. No home to be discharged to, no family to hold vigil at their bedside.) I was still one of those seriously mislead individuals who believed that "whew! we dodged a brain bleed. No disabilities for us! He came home with just the standard preemie diagnosis and specialists.

The cardiologist, gastroenterologist and audiologist all released us from their care at 17 mos. We inherited an awful neurologist around the same time. We originally went to him for "seizure-like activity" that originated at his 1st birthday party. My mother, a healthcare professional for 35 years witnessed it and says they were definitely seizures. However, they were unable to reenact them under controlled conditions, and after a couple months, he ceased to have them at home. They discovered a hydrocephalus during an MRI for the seizures. Around this time (2 yrs old) he was also diagnosed with extremely mild CP.

So, all those bullets we thought dodged, were just waiting for us to become comfortable with our son's outcome.

He has been receiving OT and PT, and some ST, through the Early Intervention Program here, called Babies Can't Wait. Unfortunately, the suits are messing up the funding and that program is not going to be able to stay afloat much longer. When he turned 3, he was evicted from that program and accepted into the county school early intervention program. That is where he is now.

His gestational age is 38.5 mos, adjusted age is 35 mos. His cognitive and language skills are well above his "normal" peers. Sometimes, his speech even surpasses his sister, who just turned 5. His fine and gross motor skills are his area of challenge. He was 22 mos old before he started walking. (he was over a year old before he could lift his head up off the floor) He has just now started jumping, getting both feet off the floor and we are working on pedaling a trike. He can spear with a fork, but a spoon is a challenge, also a regular cup. He cannot dress or undress, or unscrew a cap.

Then we have his sensitivity or lack thereof. He has always liked touching skin, usually my stomach or chest, but his will do, or really any skin. I just always thought that was a hold-over of Kangaroo Care in NICU. He has a huge tolerance for pain. He was covered in fire ants a couple weeks ago and did not cry once. He just said " help me please Mommy". Yet he cannot stand to have his shirt off, or his shoes on inside. In the car, the shoes HAVE to be on!

I was a preschool teacher in a previous life and have a college degree, but I honestly cannot distinguish what is normal stubborn 3 yr old behavior and what is a possible "syndrome"

Ok everyone, now it's your chance to help. Please leave a note to Michelle in the comments section.

The Monster

OCD.

It's a monster.

3 letters.

It controls Paige's life. Every aspect. Every move she makes. Every move we make.

I've waited to post this because we were trying so hard to focus on the good news at school. But, OCD doesn't care about the good news. That freakin monster never sleeps.

Her arms and legs have sores all over them. She picks the scabs because OCD tells her to. Her clothes have blood stained spots on them. Her sheets too.

Last week OCD told her to get killed. Hubby and I were walking in the parking lot, talking to her and then she was gone. We turned around to find her in the middle of the lot. We yelled to her to come back to us. She cried and explained that her OCD thoughts told her "to run into the parking lot and get killed."

She tries to fight this monster. She really does. But, according to her, the harder she fights, the stronger and louder the OCD thoughts get. She tries to give in to it, just a little, to make the thoughts go away.

She came home Friday, after spending a few days with her grandparents. She had a lot of fun. They treat her really good and she loves being there.

After a few moments of being home she started to cry. She climbed up on my lap and was shaking, her arms spotted with bloody scabs.

She begged me to help her stop.

She begged me to find a different medicine.

She begged me to stop the thoughts.

She fought so hard to control the picking while she was at her grandparents house. Now that she was home the floodgates were opened. Normally we tell her not to pick but to fight the monster instead. We encourage her and tell her that her brain is in control and she can beat the OCD monster. But, that day she was losing. By telling her to fight it, it caused the monster to get stronger. So, we told her to go ahead and pick. She was so relieved. The look on her face was one that we hadn't seen in so long. Even though the monster was winning and she had open boo boos, she was relieved to not have to fight.

We took her out to her favorite place to eat and then kept her busy by going to a few stores and being silly in the car on the way home. It was nice to hear her laugh so much.

But, when we got home she sat by me and begged again.

"Help me Mom."

I'm really trying Paige.

"You're Talking About My Life!"

This has been said to me a few times since I've started this blog, but the emotion attached to it has been very different.

I have received many emails from parents who are happy when they find my blog. They cannot believe they are not alone. My experiences and those expressed in the comments echo their life. They are grateful for my words.

Then there are the few emails that I have received from parents who think I am actually talking about them. They are angry because they think I've used their experiences and claimed them as my own.

For the record, all of the posts in this blog are written by me and are about my life (unless specifically stated). If you think you recognize an aspect of my life, in your own, it is because there a lot of very common long term effects of prematurity.

On a side note... if you send me a private email, I will NEVER use the information in my blog unless I ask you first. Never. I hold private emails in very high regard and appreciate each and every one that I receive.

I Never Saw It Coming

Over and over we deal with new issues with Paige (former 25.5 weeker-now almost 9). It's never ending. A test for this, a medicine for that. A new diagnosis here, a suspicion there.


I'm always on guard. Ready and waiting for the Mack truck to hit us again. I pick up the pieces, adjust our lives and attempt to move on.


But one day last week, when our son (born at 35.4 weeks-now 17 months old) started excessively clearing his throat, I chalked it up to a new skill he learned and obviously figured out that it drove me nuts. And when, that same night, he was red and wheezy, I chalked it up to all of the running around he did at his sister's school.


But, when he woke up the next morning, hives everywhere, face so swollen that he could not open one eye and edema so bad that he looked like he was growing a horn out of the middle of his forehead, I froze.


After going over everything he ate the day before, I realized that he had a bite of a peanut butter and jelly sandwich. That couldn't be it, right?


A trip to the doc, 2 days of antihistamine and a visit to the allergist a week later.


Which lands us on today.


It was at the allergist office that the freakin Mack truck came out of nowhere and flattened me.


My son.


Life threatening peanut allergy.


Less than 2 minutes after his skin was pricked with the peanut and tree nut allergen he was wheezing, coughing, rubbing his nose and freaking out because he couldn't breathe good.


Blah, Blah, Blah... EpiPen at all times... Blah, Blah, Blah Life threatening reaction.... Blah, Blah, Blah... Watch that Paige doesn't give him anything to eat.... Blah, Blah, Blah... A bunch of other words flowed from his mouth.


To the driver of the Mack truck... could you please find it in your heart to blow your horn so I have a little warning before you hit me again?

This was taken less than 5 minutes after his skin was pricked.