Friday, January 11, 2008

Where Did *I* Go?

Last year I wrote about hubby, in a post titled "Where did my husband go?"

Recently I've been thinking... where did I go?

It all started a few weeks ago. Hubby and I were watching T.V., after the kids were in bed, when he tickled me. I laughed and hubby said, "I love hearing you laugh." I loved it too but it seemed a bit foreign. Since we entered into the world of prematurity we have had many good times as a family. It hasn't all been hard. But, I do remember when I use to laugh all of the time. I was that person who woke up in the morning with a smile on my face and ready to go. You know the type, tries to spread morning sunshine to everyone. (now I want to strangle that type of person)

Many people change after having (typical/healthy) children, but their "core self" seems to stay the same. You drop your child off at the babysitter (or put the kids to bed); you and hubby then jump back into your former selves and have a nice time while out to dinner or even simply watching television together. Yes, you are not the exact same person that you were before kids, but you can get back to that place in your lives with a bit of ease.

When you have a child born under different circumstances or have a child with long term issues, the lines surrounding your "core self" change. Blur, if you will. The blurred perimeter gets wider as the years go by until the core itself is also blurry.

Who was I? What did I do with my time before doc visits, research, kissing boo-boos, med management, etc.? I know I used to laugh a lot.

What did I do before prematurity was my focus? I know I had other passions. I know I cared about other causes.

Last night I spoke in front of the school board. It was unscripted (something that never makes me nervous-I know, I know, I'm odd). As I was talking, it started to come back to me. Wait a minute, maybe *I* am still in here somewhere!

The past 9 years have changed me. There is no denying this. Some areas of change were for the better and some were not. I love my children and would gladly accept the typical change one experiences after becoming a parent.

But, after experiencing the fun and laughter alone with hubby and the rush of publicly speaking about other passions, I'm hoping the blurred perimeter of my core self continues to narrow!


Beverly said...

Hello, I am writing to see if you could help me suscribe to Neonatal NP? I am a neonatal ICU nurse and interested in reading all the blogs I can about premies. I have bookmarked you blog and look forward to reading it. Thank you Beverly

The Preemie Experiment said...

Hi Beverly,

Although I am not a nurse and do not know how to subscribe to Neonatal NP, there are quite a few nurses here who may see this and offer a suggestion.

I look forward to your insight during our discussions.


Anonymous said...

When reading this post at first I thought it was odd that you felt that your core self was blurred when to me you serve as a very solid pillar of strength. It is not easy in today’s world to speak the truth without constantly painting everything with a think sugar coating. So maybe you do not feel much like a core to yourself, but you serve as a core to a large group of other preemie parents. It is great to read about your struggles and not just your triumphs. You also perform the public service of allowing others to speak their minds. I especially look for the posts of Helen Harrison who is an amazing source of knowledge, intelligence, and wit.

Anonymous said...

Here is an eloquent quote from an article by a preemie father in Exceptional Parent magazine that sums up the role of parenting in the aftermath of hurricane prematurity quite nicely. The article was called "Surviving" by James Elliott. I especially loved this paragraph:

"I love my son intensely, and I'm thankful that he is alive. But I refuse to pretend I'm at peace. I wouldn't wish my family's life on my worst enemy. I've learned a lot from our experience, but I compare my feelings to those of a returning combat hero, standing under bright lights during some medal ceremony. The soldier stands there blinking, tryin to accept accolades from the crowd, when inside all he knows is that he had to watch his buddy get his guts blown out on the battlefield. He knows he just happened to be the guy left alive to try to save his friend. This is not a peaceful knowledge. He knows he survived, that's all. There can be no peace with the rest, and no denial of the nightmare he had to live through - not until someone finds a way to set back time, to prevent that shell from exploding, to relieve him of the painful memories of a loved one's suffering.

The author goes on to describe life with his preemie son - the day to day struggles - he adds "I would step off a cliff with a smile on my face to prevent my son from suffering anymore. But the simple fact is that I am in for a lifetime of watching my brave little boy suffer in ways that will break my heart over and over again. This is true for most of you also."

THESE are the issues that change us as parents into something quite different from the carefree people we were prior to our preterm infant's birth.

Anonymous said...

Stacy, you had an Aha! experience.

You came back to yourself.

You discovered you had "ripened".

And you were led by a child. Our kids are often our best teachers.
Don't you think?

Chris and Vic

Helen Harrison said...

To anonymous 5:02 and aonymous 1:48

You and James Elliott really get to the heart of what changes us after the birth, and impaired survival, of our preemies.

I hope that neonatologists will consider this life-altering suffering and ask themselves if they would consider it for their own children and themselves. Many neonatologists wouldn't want it, and have told me so.

I've recently been doing research for a perinatal journal article. I found some powerful statements in the literature that physicians may not often see, including in the pages of _Exceptional Parent_ and in the ethics and nursing journals.

I highly recommend almost anything that Dr. Anita Catlin, a professor of nursing, has written on neonatology, preemies and their families. Her website is

And her articles are available there.

I particularly liked her recent article on the struggles of preemie parents to get home health care. There is an excellent article on prenatal advance directives ("Thinking outside the Box..."), an article on palliative care, an article on preemies who can't leave the hospital ("Extremely long hospitalizations of newborns..") and an article on the often cynical attitudes of neonatologists toward resuscitating at the margins of viability ("Physicians' Neonatal Resuscitation...").

In the ethics literature, there is a hard-hitting article on the "moral distress" of nurses asked to implement treatments they know will lead to immediate and life-long suffering. (Hefferman and Heilig "Giving moral distress a voice: Ethical concerns among Neonatal Intensive Care Unit Personnel" Cambridge Quarterly of Healthcare Ethics 1999;8:524-526). {not available for free, alas)

We parents need to know we are not alone. We need to be encouraged to speak up and speak out. We can work with nurses like Anita --and, believe it or not, more than a few neonatologists who are genuinely concerned --to bring about change and make a difference.

I think Stacy is one of the bravest women I have ever encountered, and I hope her bravery will continue to empower all of us to speak the truth as we know it.

Chrysalis Angel said...

I wish you all the best in this new year. Thank you for your recent support.

The Preemie Experiment said...

Thank you everyone.

I think the reason I am able to see my core self becoming less blurry is because Paige's mental health is much more stable at this point in time. When you deal with an issue day after day, with no end in sight, and no one helping with the same sense of urgency you are feeling, it becomes impossible to move forward in your own life. You do move... from bed to the computer to the doc visits but there is no forward motion. Now that meds are at least showing her that she is able to get a grip on the OCD, we are all trying to find our into a new groove.

The hard part is that we can never completely relax. Hubby and I know, all to well, that the world of prematurity is filled with many shoes floating over heads, just waiting to drop. Some of you may read my words and feel that I am pessimistic, this is not true.

I am realistic.

Nancy Brown said...

Thank you.. I really needed that today.

terri w/2 said...

PE said: "The hard part is that we can never completely relax. Hubby and I know, all to well, that the world of prematurity is filled with many shoes floating over heads, just waiting to drop."

No, you never can completely relax. Today the shoe dropped for us (again). My daughter saw a surgeon today for the gallstone dx last week - she is scheduled for surgery on Wednesday. The surgeon was new to us - had no history at all of my daughter, her medical diagnosis, her prematurity. I gave him a brief hx by starting with "she was a preemie" - his immediate question "was she on TPN in neonatal" - yes - 2 months. .he said "that's why she's got a gallstone". . So, once again, a prematurity-related something that we had not expected. Surgery, recovery, pain and life disruption.

Helen Harrison said...

To Terri w/2:

I'm so sorry to hear this. I hope all goes well and that your daughter makes a rapid recovery.

Did the surgeon tell you how he knows about the TPN/gallstone connection? Personal experience? Studies?

My info is largely "anecdotal" and from preemie-list and other support groups. Neos I've talked to don't seem to know about it.

This information needs to get out to neonatal staff, NICU parents, their children's physicians, and adult former preemies.

Doc's Girl said...


It is nice through all of life's chaos to be tickled in bed. It happens quite often here (the tickling and the chaos) and I often wonder if I will remember these moments 10 or 20 years from now.

I guess it's part of the reason that I have a blog. :) You can always see progress in everything, especially yourself....:) I'm sure you see that now. :o)

Helen Harrison said...

To doc's girl:


To some of us, just sleeping 4-6 hours in a row is about as close to bliss as we are ever going to be again.

The Preemie Experiment said...

Terri... I'll be thinking about you and your daughter tomorrow. Please send an update when you can.

I first heard of the gallbladder/preemie connection about 4 years ago. On one of the preemie groups I was on at the time, there was a string of gallbladder surgeries in a short amount of time.

Paige was having odd pain, indicative of gallbladder issues, last year. She had an u/s which came back normal. We then saw her GI who denied the connection to TPN and gallbladder issues. I brought him research but he refused it. Ugh. Her pain is better but it does come and go. It did start back up again 2 days ago so we are keeping an eye on it.

I agree that others need to know about this. I am going to try to find the original research and I will post it soon.

Good luck Wednesday!

The Preemie Experiment said...

Doc's girl wrote: "It is nice through all of life's chaos to be tickled in bed. It happens quite often here (the tickling and the chaos) and I often wonder if I will remember these moments 10 or 20 years from now."

It used to happen quite often in our house too (before kids) and it sure was nice to have it back. Hubby and I used to laugh a lot. We still do, just not as often.

Hubby and I were together (married and dating) for 7 years before Paige was born. I feel that this is the major reason that we are still together today, through all of the rough times. When we are asked our "secret" to staying together, we always tell couples to wait to have children. Develop your life together first! Is this 100% foolproof... no. But, I do feel that it's easier to re connect when you are strong before chaos.

Nice to see you again Doc's girl!!

Helen Harrison said...

To Stacy:

I have to agree about waiting to have children!

DH and I were together for 10 years, married for 5 before having Ed. I was 29.

And I'm so glad we had our adventures when we were young.

On the other hand, I hesitate to advise anyone to wait to have children because early to mid-20s for mom is prime time for healthy babies.

It's a quandary I'm especially aware of right now as my daughter approaches 28.

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Aidan's mom said...

How interesting that you post this. I have been wondering that same thing about myself. There have been times I wonder where my DH "has gone", but lately I have found myself wondering where I have gone. I actually just wrote about this last week.

Great post!

terri w/2 said...

Re: gallbladder issues/TPN.

I spoke with the general surgeon yesterday who is doing my daughter's gallbladder surgery today. .asked him why he thought there was a connection between TPN and my daughter's gallbladder issues. He said that he suspects that TPN at such a young age creates sluggishness in the gallbladder. .he said that when he worked at a large metropolitan hospital, he frequently did surgeries for gallbladder on former preemies who were now teens and young adults.

Helen Harrison said...

To Terri w/2:

Hope all is going well for your daughter, and that she has a quick recovery.

If you get a chance to speak again with the surgeon, you might suggest to him that he write up his experiences concerning gallbladder disease and prematurity/TPN and put them in a letter to the editor of one of the major medical journals for possible publication.

These letters can generate research and promote awareness of the issue within the medical community. Perhaps, eventually,this info will also get out to parents and preemies.

The Preemie Experiment said...

Hope the surgery went well. Update us when you can.


Doc's Girl said...

Oh, Stacy, I totally agree with you about waiting and building your relationship. Children will not be for a long time in this household. :)

Not because of any bad reasons but just because I'd like to at least be in CRNA school before kids and, yes, they change everything.

I have my almost 16 year old brother that I'm co-guardian of and that is enough for me for now! :-D :-D :-D :-D

P.S. Sorry about the person using Paige's picture in a video without your permission--that was really rude!