Friday, March 30, 2007

Where did my husband go?

Boy, one aspect of having a preemie that I was not prepared for was how much my relationship with my husband would change.

Between dating and marriage-we had 7 years under our belt before Paige was born. 7 years and only 1 huge argument. No exaggeration-we really only had one major argument.

I was not prepared for the flood of emotions I would have towards him, during my hospitalization, the 78 days in the NICU and then during the first few months after bringing her home.

During my hospitalization (3 1/2 weeks total), he stayed with me. 24/7 He took a leave of absence from work and stayed in the hospital with me. I loved him so much more than I ever thought possible. I can remember being filled with such strong love that it was overwhelming. I cried tears of joy and gratitude about him, on many days.

The months in the NICU were hard on both of us. He went back to work and I stayed home, by myself, with no way to get to the NICU (the hospital was 90 minutes away and I gave up my company car knowing I wouldn't be returning to work). We would go to the hospital as much as possible but I started to feel like I had abandoned by child. He didn't feel this way. This was the start of the separation in our coping mechanisms. We had always been on the same page and that was gone.

After Paige came home the gap between us widened. He went to work and I stayed home with Paige. Therapy 5 days a week, in our home, many doc visits, specialists, medicines, monitors, floods of emotions-I felt alone. He would come home from work, help with Paige and then go to bed. I can still remember the first time he said, "I have to get sleep. I have to work tomorrow." Paige didn't sleep at night and hardly slept during the day. When she was awake she cried almost every moment. I couldn't hug her due to her severe sensory issues. So, I was alone with a screaming baby, who couldn't be comforted, day and night. One morning hubby came down the stairs to leave for work and I was on the floor crying and Paige was on the couch crying (she was still an infant). He said something like, "maybe I should stay home today." I screamed something like, "you think??!!"

As the years went by it seemed impossible to work on our relationship. Everything focused around Paige's care. Everything. We were stressed because of the lack of money. I was stressed because I was the main caregiver to Paige and felt that I never got a break. Both of us didn't feel comfortable leaving her with anyone, even though we had grandparents who were quite capable of taking care of her.

Then there was the emotions of grieving the loss of the dream of having more children. Neither of us was ever on the same page when it came to be daring enough to try again. Considering men (and some women) feel the most emotionally connected to their partner when they are having sex... well, let's just say we were not connecting. It wasn't hubby. It was all me.

As Paige got older, her mental health issues got worse, as did her medical care. Epilepsy, anxiety issues, OCD, possible mito diagnosis, GI, blah, blah, blah-you get the picture. I was always the one taking her to doc appointments, doing all of the research, taking care of paying the bills, etc. He was at work and somehow I found that to be his fault.

The "us" in our relationship became obsolete. It was hard to stay together, especially since we saw so many other preemie parents getting divorced.

Both of us were feeling like the other wasn't doing their share. When, in reality, we were both doing more than our share. There was just too much to do. Too much stress. Too much worry. Too much of everything.

I still don't know exactly what changed in us. I do know a few things that helped. We started letting grandparents babysit. We couldn't afford to go anywhere so many times we just sat and watched television together. We also started trading days on the weekends. This is something we still do to this day. Saturday is his day to sleep in and Sunday is mine. No exceptions. One of us cannot plan a family outing or make other plans on the other one's day to sleep in. I look so forward to Sunday mornings!!

Another thing I had to do was accept that our coping mechanisms were completely opposite. I am the researcher and he is not. I learned that it did not mean that he loved Paige or me any less. My hubby is very good at "ignoring it and it will go away." I am not. We are different and that is ok.

We were back on track.

Then I became pregnant. Hubby said, "don't worry. it will all be ok." (who is this man? has that line ever worked on me?? if you can't produce hard facts as to why it's going to be ok then shut up!) When it came time to have the "talk" about our cutoff, should something happen to my pregnancy, he refused to even discuss it. I was devastated. I *needed* to discuss it in order for me to let go of the worry. Every time I started the conversation, he would stop it. I was back to feeling alone. I could have let myself drift back to that ugly time between us, but I didn't allow it. I just told him my wishes (I've discussed this in previous posts) and then told my OB. To this day I wonder what would have happened had he been forced to make that decision, if I wasn't around.

Over the past 8 1/2 years there have been many arguments. Many battles. I'm thankful for the first 7 years that we had, turmoil free. It's those very years that get me through the ones that lie ahead.

Thursday, March 29, 2007


Silence those annoying preemie parents-at all costs!

If they say something that you don't agree with, call them names until they go away!

They must be stopped!

They are doing no good by reporting on the issues their children face. All preemies catch up by age 2, don't you know!

Don't let them question the research we use when talking to potential preemie parents! The issues their children face are not real!

They are up to no good!

Sunday, March 25, 2007

You Need What?

We interrupt our regularly scheduled programming so I can publicly tease my husband.

Sorry everyone, but I just have to do it. So, if you are looking for a post on prematurity, check back in a few days. If you want to stick around and see what I deal with on a daily basis... read on.

I should start by saying that I love my husband very much. I married my best friend almost 13 years ago, after dating for 3 years and getting to know him 5 years prior to dating. I can honestly say that I knew what I was getting in to.

That is, until he started working in an industry that is his passion.

Why is this bad you ask?

Unfortunately for our finances, hubby designs home theater systems (among other systems) for a large corporation that sells to installers. He loves his job and loves the technology. It is not uncommon for hubby to come home and say something like, "We are going to start carrying xyz brand of plasmas so I think I'm going to get one." (which, by the way, translates to "I really want one, can I have it?") He's been employed in this industry, in various forms, for 12 years. When he was transferred, we had a house built with a room in the walk out basement that was surrounded in cement-no windows-for his theater. We have speakers throughout our house with remotes that control all of them. Even our light switches can be controlled by remotes. We won't have a lock on our theather... we'll have a fingerprint reader! Want to ring our doorbell? You won't find one. You have to push a 'call' button that rings our phones. I can talk to the stranger on the other side of the door. (ok I love this one)

I thought I had heard it all.

The other evening hubby came out of his nightly shower and, with confidence, told me, "We need a television in the bathroom. I can get a good size LCD from work." I could tell that he had really thought this through and believed that he really *needed* one.

I must have had quite a look on my face because he quickly continued his argument (he was prepared for my opposition) by saying, "There's nothing to do in the shower. I can run the TV off of the satellite."

Nothing to do in the shower?! Was this seriously his best argument? I didn't know what to say. He was staring at me like he had just delivered the best convincing speech as to why he needed his new toy. If you have ever seen "A Christmas Story", the scene where Ralphy is turning in his theme on what he wanted for Christmas, and is smiling ear to ear with pride... that was my husband. He was lost in the moment.

I started laughing. The more he kept on delivering different reasons for his potential new purchase, the more I laughed. The more he was getting aggravated, the more I laughed.

He returned to the bathroom and I returned to working on my laptop, where I was paying bills. Yes, I was paying bills when he asked me for a television in the bathroom! That was his crucial mistake in his plight. I couldn't even figure out where I was going to get money to pay the huge medical bill from Paige's last GI test and he wants a television in the bathroom!

Poor hubby. He has to take a boring old shower every night and his wife won't let him have a television to watch.

Sunday, March 18, 2007

Resuscitation Limitations Based on Gestation

I had planned on waiting a long time to write this post, knowing it may cause a riot. But, since I am accused of saying things, that I never have, I thought now would be a good time to set the record straight.

Also, I really believe that this topic NEEDS to be discussed. If we just sit back and let the current trend continue, it won't be long before 20 weekers are saved. That very thought scares the hell out of me.

All of you out there who have sent me nasty emails, posted about me on your blogs and started threads on preemie groups about me, I dare you to find one post or comment where I said that *all* babies should not be saved before a certain gestation.

I believe parents have the right to choose.

I am very open about my own experience. During my 2nd pregnancy, I made quite sure that everyone knew my wishes. I wanted only comfort care for my son if he was born before 24/25 weeks. Was this an easy decision? Yes. I cried about it for the weeks leading up to that gestation. Of course I wanted my son to live. But, I didn't want him to experience the pain and trauma of the NICU and beyond. I loved him from day one. I am thankful, every single day, that I made it to 35.4 weeks.

Again, I believe parents have the right to choose.

What's wrong with that picture is that most parents are not educated about the true side of prematurity. Beyond the miracle stories we see in the media and the cousin of a neighbor who knows of a 25 weeker, not much is told about the other side. How can anyone make a decision with only 1/2 of the information? The only way that I was able to make this loving decision for my son was because we had already been through it all with my daughter, born at 25.5 weeks.

Did I mention that I believe parents have the right to choose?

But, what happens if parents choose to save their 20 weeker? Should doctors allow it? How about a 21 weeker?

For this reason, and others, I do also believe that there needs to be a limit put on resuscitation. I will honestly say that I do not know what gestation should be the cut off. I am not armed with enough information to make that determination.

I do know that medical science has not caught up to the gestations we are saving even now. If you ask doctors, many of them will say they have a cutoff if their own child was born premature. That speaks volumes!

Ok, fire away. I've put up my shield and I'm ready.

Thursday, March 15, 2007

Glass Half Full or Half Empty?

I'm smashing that damn glass!

There, it's done. Now no one can use it anymore.

Should we really be measuring success based on inaccurate research?

Call me a pessimist. I don't care. The facts show that preemies are not escaping the effects of the NICU. Period.

I am not saying that ALL preemies are majorly affected, long term. There are success stories. I am honestly not disputing that fact. What I am disputing is the number of them. Parents do not share honest information about their child and adult preemies do not either.

I worry what this misinformation does for the future preemies. If neonatologists think the glass if half full, will they try to improve conditions in the NICU?

I hope everyone takes a moment and checks out Clark's post on pain in in the NICU.

Monday, March 12, 2007

I Wouldn't Change A Thing!

You wouldn't?

Well, I would!

Whenever I hear someone say that they wouldn't change anything about their premature child; the birth, the experience, the outcome, etc, I am left confused. How could anyone WANT their child to go through all of the pain and limitations that they experience? How could a parent want to watch their child suffer?

I love my daughter with all of my heart and soul. I am completely committed to helping her live an independent life, hopefully free of physical and mental pain.

But, if I could go back in time and change the way she entered this world; let her cook a lot longer, I most definitely would do so!

Well, DUH!!

I am always amazed when I see research like this...

Who paid for this??

Not to mention... I would love to see a study that helps determine if Early Intervention really benefits preemies (and not just their parents).

Preterm Birth–Associated Cost of Early Intervention Services: An Analysis by Gestational AgeKaren M. Clements, ScDa, Wanda D. Barfield, MD, MPHa, M. Femi Ayadi, PhDb and Nancy Wilber, EdDa
a Center for Community Health, Massachusetts Department of Public Health, Boston, Massachusettsb Healthcare Administration Program, School of Business, University of Houston-Clear Lake, Houston, Texas

Objectives.: Characterizing the cost of preterm birth is important in assessing the impact of increasing prematurity rates and evaluating the cost-effectiveness of therapies to prevent preterm delivery. To assess early intervention costs that are associated with preterm births, we estimated the program cost of early intervention services for children who were born in Massachusetts, by gestational age at birth.

Methods.: Using the Pregnancy to Early Life Longitudinal Data Set, birth certificates for infants who were born in Massachusetts between July 1999 and June 2000 were linked to early intervention claims through 2003. We determined total program costs, in 2003 dollars, of early intervention and mean cost per surviving infant by gestational age. Costs by plurality, eligibility criteria, provider discipline, and annual costs for children’s first 3 years also were examined.

Results.: Overall, 14033 of 76901 surviving infants received early intervention services. Program costs totaled almost $66 million, with mean cost per surviving infant of $857. Mean cost per infant was highest for children who were 24 to 31 weeks' gestational age ($5393) and higher for infants who were 32 to 36 weeks' gestational age ($1578) compared with those who were born at term ($725). Cost per surviving infant generally decreased with increasing gestational age. Among children in early intervention, mean cost per child was higher for preterm infants than for term infants. At each gestational age, mean cost per surviving infant was higher for multiples than for singletons, and annual early intervention costs were higher for toddlers than for infants.

Conclusions.: Compared with their term counterparts, preterm infants incurred higher early intervention costs. This information along with data on birth trends will inform budget forecasting for early intervention programs. Costs that are associated with early childhood developmental services must be included when considering the long-term costs of prematurity.

Monday, March 5, 2007

Have NICU's Changed?

In doing some recent research on the technology (both equipment and medicines) used in today's NICU's, I was surprised a few times.

First, it's hard to actually find information on current NICU practices. I realize, as a non-medical person, I do not have the same access as medical staff to research publications but it was next to impossible to find much of anything in the way of usable information.

Second, as I was googling I noticed that my blog has been mentioned in a few preemie groups that I do not belong to (and never knew they existed).

It is the latter of these 2 surprises that caused me to want to discuss it further with all of you here.

See, when my blog was mentioned, it was because other preemie parents were saying that their outcomes would be better than my daughter's life because so much has changed in the NICU since my daughter was born, 8 years ago. One mom went as far as discussing my blog with her pediatrician, who told her not to worry because so much has changed and she has a better chance of a better outcome. Her child was a 24 weeker home on oxygen.

After reading many posts from parents of early preemies, who are still under a year old, I am finding that many of them seem to have more issues, early on, than those preemies born around the time when my daughter was born. More of them are coming home on oxygen. More seem to have ROP. Many more of them seen to have brain bleeds. By far, many more of them have hearing loss.

My daughter did not have any of the above.

So, has the NICU really changed in 8 years? For the better? Worse? I need the help of medical staff and researchers to make that determination.

*Our* NICU (Level 3) experience in 1998 (for our 25.5 week preemie)...

*Vent for less than 24 hours - no postnal steroids used to ween
*CPAP then nasal cannula
*Postnatal steroids used for kidney issue or possible CAH
*Daily heel sticks
*3 Transfusions
*Closed incubator (except 3 days prior to going home)
*VERY loud environment-phone at bedside, helicopter landing above NICU, loud speakers
*Bright environment-quilts were used over incubators for some hours of the day

I'm sure there were some things that I was not aware of but the above is listed on various papers from her chart.

Anyone else care to weigh in on the differences from their NICU experience?

Nurses, neo's, etc... any thoughts on how the NICU has changed?