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.

31 comments:

Mommy in IL said...

Glad to hear its not just us that has those problems. Sometimes we do ok and other times its really bad. There is no rhyme or reason to it.
I like how you break up the weekend mornings. Maybe we should try that.

Shannon said...

Wow, funny how things are with couples that have sick children. It seems like you could be talking about my life as well.

Jeff and I were together almost five years before I became pregnant with Ashton. I have to admit that I wasn't happy to be pregnant but Jeff was more than happy! He said that he would work two jobs if he had to, get up during the night to do feeds, do this do that...

Anyhow Ashton came at 24 weeks. I was at the hospital for about 16hours a day. Jeff drove back and forth everyday to work.

Ashton came home after eight months in the hospital. We fought over who would get up in the night to feed..we both wanted to.

Wow how things have changed. It is almost like as Ashton gets older Jeff gets further away. He cannot handle the issues like I can.

I am also the researcher, Jeff could care less about reading, the Internet etc.

I take Ashton to all of his appointments, deal with all the therapists that come here...Jeff comes when he can. He works long days and when he comes home he is almost ready for bed.

Weekends...Sundays are his only days off...he sleeps until he feels like getting up. Frustrating for me because I never get to sleep in. Ashton doesn't sleep well at night so I never get a good sleep.

Anyhow I am always glad to hear that I am not the only one going through this...Thanks!

Helen Harrison said...

I am so grateful that DH, at the time Ed was born, was working from home.

When Ed left the NICU we simply moved the NICU routine in with us, including scrupulous charting. (Looking back on it all, our early obsessions with Ed's feeding and lack of weight gain seem humorous now that he weighs 170 pounds and is on a diet!)

At any rate, DH and I divided Ed's care into 2 12-hour shifts. That way each of us got some sleep. And to some extent that's what we still do 31 years later.

DH does Ed's morning care and takes Ed to "school" 4 days a week and I do most of the rest. We each give each other "weeks off" when one or the other does total care.

It is far from a normal marriage, and when people ask us how we've managed to remain together, we have to respond, in all honesty, that we simply haven't had time to consider the alternatives.

We tend to take separate vacations because one of us needs to be with Ed at all times. I usually spend my "vacations" at neonatal conferences, where I get to enjoy the caviar and champagne receptions hosted by the drug companies.

In some ways, although Ed's problems and his care have separated my husband and me, they have also strengthened our bond. We are the only ones who really know what the other has been through. We are the only ones (with the possible exception of our daughter and one beloved babysitter and teacher) who *really* know Ed.

As for fights, the most contentious moments in our marriage have involved house repairs and remodeling, a topic in which Ed was only tangentially involved (part of the construction was to improve Ed's living quarters).

Happily, that aspect of our lives is mostly over now and Ed has a big, new room -- an area for his keyboards and music, and a media center (in progress). He also has an easy-to-clean bathroom with a shower large enough for us to get in and shower with him.

I tend to divide my life and marriage into two eras: before Ed (BE) and after Ed (AE). The two halves of my life/marriage seem utterly unrelated. DH feels the same.

Anonymous said...

Thanks for pointing out that stresses and changes in the marital bond go deeper than whether or not you stay together, or get divorced.

There is the watching your partner, struggling, and in pain, and being too overwhelmed yourself to be able to really help. The first couple of years of turning to others instead of your spouse for major support, b/c you feel guilty asking for it from someone barely treading water himself. For us the most notable lasting effect is an intangible, almost undefinable deplete of reserves. Yes, we still love each, and generally act lovingly to each other. But, my formerly gentle husband is quicker to use sharp words. I (formerly a talker) am quicker to withdraw. Sleep has also become a sometimes jealously guarded commodity that is difficult to "share".

A year after our daughters' births and ultimate deaths, I ran into one of the NICU nurses, giving her the update she asked for of what had happened, how hard it was, etc. "Are you guys even still married?" was her first question, even though I had not mentioned our marriage specifically. I can only guess marital issues must be extremely common.

Yes, we were, and are "still together". Yes, we work on keeping it that way. I adore him, and am grateful for all he has done to keep our household running when I could not even focus enough to read a newspaper. But I cannot pretend that we have not been hugely affected. Our lives, and our marriage will never be the same.

sce

Carrie said...

Your husband sounds a lot like mine. Thanks for writing that; it makes me feel a little normal.

Lisa said...

"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??!!"

Okay, this made me laugh out loud (sorry)... just because I've been there all too recently! At least W's Neurologist told us in advance that he may be very fussy due to his brain injury. I'd say "very" was an understatement.

And, like Helen, when M (my first preemie) came home from the hospital, I kept all the charting going. I was obsessed. We had a white board and would write down every ml she ate and what time. We also had a daily total list. My husband and I were at each other's throats until the Pediatrician told us to stop. Good doctor.

Thank goodness my husband and I are so alike. I can't imagine what it would be like to go through any of this with someone else.

Awesome Mom said...

We had some issues too at first. I was in the hospital with Evan after his heart surgery so I was the one that learned how to take care of him from the nurses. My husband was at work so he missed that. He was more than happy to leave all the extra care to me because I think he was a bit scared that he might do something wrong and hurt Evan. I had to insist that he step up to the plate and he finally did which eased a lot of the tension between us. Good post!

buddhist mama said...

where did our relationship go? It is not so much my husband I miss but our relationship pre-kids.

Actually, the dividing line was not birth per se but the infertility/high risk pregnancy/preterm labor/NICU coaster. It seemed like once we got on one ride, we just couldn't get off, even when we wanted to.

The infertility coaster started slowly, but soon it was nothing but screaming highs, and swooping dives, as every month pitted hubby and me against each other with a newer, improved method of having more fertile, ie. more stressful sex, or a high tech simulation thereof.

The ride ended when I finally broked down and took the hard drugs---me the herbal gal who didn't even use ibuprofen when she shattered her knee. As expected, there was hell to pay when I took my first injectable fertility drugs during my last round of IUI. IUI is a low-tech treatment (think turkey baster) and unlike IVF, there is no way to control the number of fertilized embryos that result. My ovaries were swollen like grapefruits and there were a tad too many sacs in my womb.

So the pregnancy ride was more than a little bumpy and suddenly we were talking about who was going to stay on the ride. I mean of course the fetal reduction a number of docs now urged us to consider, given the 'poor outcomes', our fertility gambling had produced.

It emerged that my husband and I read statistics totally differently: like an economist and me like a Buddhist, throwing karma and dependent origination into the mix. This being the idea that our little roller coaster car is connected to every other car and all of the passengers in the universe. It's a logic that isn't really amenable to statistics, to put it mildly.


Somehow, we pulled together and had the reduction, but still delivered preterm at 26 weeks. Naturally, I thought it was karmic retribution while hubby reminded me it was undiagnosed PROM and a simple obstetric mistake. Yeah, my OB didn't bother to check for amniotic fluid when I came into her clinic the day I started leaking mucus and fluid, because she thought it was a yeast infection.

So, finally, we cashed in our last chips and got on the NICU roller coaster for one last thrill. This ride, unlike the others, brought us closer not further apart. Maybe it was the fact that two lives lay suspended before us, maybe it was that we were exhausted from tussling with each other. We finally stopped niggling each other and faced the real problem instead.

So the NICU was our best ride, but the three years since then have been more than a little rocky. Hubby went back to work; I stayed home, so we weren't even on the same roller coaster anymore His was called the tenure clock, mine was the year at home with twins ride, filled with anxiety producing and mind numbing attractions such as the apnea/oxygen monitor, the reflux, the sensory issues, the EI experts, the OT experts, the alternative OT therapy, and more than a little herbal, yoga, and Tibetan therapies thrown in.

How many days can I count when I'd been plastered to the couch for what seemed an eternity clutching two screaming ex-preemies, when hubby strolls through the door and asks me how was my day. MY DAY?! YA THINK?

Lately it seems like we might be getting off the ride, the sun has long set, and the park is shutting down. But then I think, isn't this just the beginning?

The Preemie Experiment said...

Helen wrote: "As for fights, the most contentious moments in our marriage have involved house repairs and remodeling,"

Oh boy can I ever relate!! Hubby is finishing our basement. When we had our house built we (he) decided that he could finish it instead of paying over $30,000 to have the builder do it. Note to self... Pay the builder (and have the cost built into mortgage) next time.

The Preemie Experiment said...

Helen wrote: "When Ed left the NICU we simply moved the NICU routine in with us, including scrupulous charting."

Lisa wrote: "And, like Helen, when M (my first preemie) came home from the hospital, I kept all the charting going. I was obsessed. We had a white board and would write down every ml she ate and what time. We also had a daily total list."

Charting... I am the queen of charts. Ok, truth be told... I am just queen of being neurotic. lol

When Paige came home we had to weigh every single diaper. (Long story short-docs weren't sure if she had an adrenal issue.) That introduced me into the world of charting. I wrote down every bottle, poop, meds, etc. Here comes the big one... When Paige would reflux, I would try to catch it and measure how much came out! Oh yes I did! lol

When my 2nd was born I forced myself not to write a single thing down. And, guess what... we all survived!

The Preemie Experiment said...

I forgot to add one tidbit to my original post... hubby does NOT change poopy diapers or clean up puke. No matter what.

In bed with the worst cramps and baby needs changing? Hubby will do it. Not mine.

Now, in all fairness, I knew this when I married him. Seriously. He has such a sensitive stomach (or weak mind control-oops did that slip out?) that he felt the need to mention it to me before we got hitched. I guess I didn't think much of it then. I figured that I could handle a few years of poopy diapers. That's all there is... just a couple years, right? Apparently Paige didn't get that memo when she was born. She was not out of diapers (for poopin) until she was over 5 years old!!!!

Hubby was lucky though (or maybe it was me who was lucky) because Paige rarely puked; only twice in her 8 years so far. Silent reflux is not such a bad thing.

Then came the boy. Fountain is an understatement. I can always tell when I need to rescue hubby by the gagging sounds coming from somewhere in the house.

Carla said...

I am so glad you did a post on this. It is definately an issue--especially in our house. After my twins were born, my husband just went to work every day and I took the train an hour+ to see the babies in the hospital (in a foreign country). He barely went to visit them once a week. He said it was too hard to see them like that---What was the alternative? He is also the "ignore it and it will go away" type.
Now 7 years later I still feel guilty that I am not out working; but at the same time the kids still get sick a lot and have doctors apts all the time. My husband works 50+ hours a week usually but not always afternoons (when the kids are home from school) and weekends. My husband sometimes seems clueless about what is really going on. He was reading a medical desription of a boy on the internet and couldn't pronounce it....I said you don't know what that is? it's exactly what Jacob has.
Oh and break up weekend mornings? Thats not possible. Have grandparents watch the kids? They all live out of state and can only visit once or twice a year--one side can't be trusted with them and the other every time we go to visit, even though Jacob loves them to death, he starts to punch himself (very hard), scream, bite, etc. Any other ideas?

Carla said...

Oh, I guess I was lucky because when we had 3 in diapers (for about 2 years) he would help change some when he was around. Now that only one is left in diapers its like pulling teeth and he WILL NOT sit with him on the potty.

buddhist mama said...

We charted for a few weeks and one day, my husband just said, why are we doing this? So we stopped and things seemed so much better. But I am more the worrier and researcher and hubby is of the 'it will be ok because i say it will be' school. It helps to have one of each in the marriage I think--I can't imagine what it would be like to be married to a more than a little compulsive worrier like me.

Our household renovations caused more days of stress but the long term fallout seems less than the issues that came out of our preemie and fertility woes. i think this is because of the total despair or depletion we felt during those times.

I appreciated what anon 5:47 said:
"For us the most notable lasting effect is an intangible, almost undefinable deplete of reserves."

We are still in the middle of that depletion, although there do seem times when we can breathe and put our relationship foremost, rather than our twins. It seems selfish in the moment, but I like to think we all benefit.

Helen Harrison said...

RE: "depletion"

My husband and I refer to the "trench warfare" stages of our son's life. These are the times when one surgery causes more problems than it fixes, and more surgery is required and we all simply exist rather than live -- fighting for every inch of progress, numb and dazed, as well as "hyper-alert" and utterly, utterly exhausted.

We don't dare try to lift our heads out of the "trenches" because that seems only to "invite" further disaster.

I remember another mother of a preemie with a very complicated course (he eventually died of shunt complications at the age of 8) saying that because of her son's premature birth she could never again experience "pure unconditional joy." DH and I totally understand what she meant.

Katie said...

I'm so glad you posted this. My husband and I separated for six months after losing our 26-weeker at 3 months old. Even now that we're together again, our relationship is forever changed. I miss him, a lot.

Chris and Vic said...

I wonder if you all realize how amazing it is---to admit to major struggles in a relationship, but then to "find a way" to repair and start again?!

It is easy and efficient in this culture, in this time in history, to just kiss-off, and not work something out, or go to therapy for months or years, or just keep trying.

I especially respect S for setting a non-blaming tone in her original post. "There are no good guys--There are no bad guys. There's only you and me, and we just disagree . . . Wooo, wooooo, wooooo!"
C and V

The Preemie Experiment said...

Chris wrote: "I especially respect S for setting a non-blaming tone in her original post. "There are no good guys--There are no bad guys. There's only you and me, and we just disagree ."

Thank you Chris. But, I must come clean. *At the time*, I did my fair share of blaming hubby. I was relentless (who me?) in telling him that I was doing more than him (more diaper changes, more worrying, more researching, etc). One day we were getting ready for bed when I noticed spots all over his legs. They were hives. When I asked him about them he said, "There's a lot of shit going on in our lives right now and I'm worried."

He was no longer this monster that I was blaming for everything.

He became human to me again.

The Preemie Experiment said...

Carla wrote: "Oh and break up weekend mornings? Thats not possible. Have grandparents watch the kids? They all live out of state and can only visit once or twice a year--one side can't be trusted with them and the other every time we go to visit, even though Jacob loves them to death, he starts to punch himself (very hard), scream, bite, etc. Any other ideas? "

Hi Carla,

How about calling the nursing college in your area? One of them may be willing to help for a little extra money. Or, how about calling the hospital and see if they can suggest someone. This way you may find someone who can understand your child's issues.

I realize that your son has some self harming issues. My daugther had/has the same problem. She used to bang her head and scratch her face. As hard as it was to leave, I still did.

I know this may sound harsh, but if I didn't get a break I was seriously worried for my mental health. She literally cried every waking moment, on almost every day. As hard as it was to leave her, I HAD to.

buddhist mama said...

PE.
I made my husband read your comment and these posts; he was really moved and he didn't realize how similar our problems were to everyone else's. He said, 'hey, we weren't the only ones close to cracking were we?"

Re--headbanging and self-harming. I've always wondered about this because my daughter has had terrible head banging at times, she will bruise her forehead black and blue some days. She seems to be coming out of it, but she still bites her hand occasionally when very stressed. Is this a common preemie thing? Any more info or suggestions where to read up on this?

The question is off topic, but it did connect to our marriage. For the first year after their birth, I blamed our relationship for our daughter's stress, thinking our constant bickering was linked to her self-harming. When I stopped to notice that her twin brother didn't seem afffected at all, I realized the causes might lie elsewhere.

Nice how twins can offer a controlled experiment on many issues.

The Preemie Experiment said...

buddhist mama wrote: "Re--headbanging and self-harming. I've always wondered about this because my daughter has had terrible head banging at times, she will bruise her forehead black and blue some days. She seems to be coming out of it, but she still bites her hand occasionally when very stressed. Is this a common preemie thing? Any more info or suggestions where to read up on this?"

We used to video tape Paige during self harming episodes. We had a pediatrician tell us that medical staff looks for bruising on odd places. He said that Paige's bruises were on places that were indicative of abuse. Geesh! She used to bite herself also. I can't tell you exactly what causes this, although I think it has to do with the inability to calm oneself. Paige had severe sensory issues and it seemed that she would bang her head the most during times when she could not self regulate. She started therapy for sensory issues when she was around 3 and it made a huge difference in all of our lives.

Helen Harrison said...

The reports from parents on Preemie-child and preemie-list certainly suggest self-injurious behavior is a common problem.

In 1998 I was part of an international research project on the outcomes of school-aged very preterm infants. I brought to the docs the concerns we were then seeing on the lists and self harming behaviors were high on that list. I'll try to get back with some examples and check out the med/psych literature for any research that may have been done on this.

Carla said...

Jacob has gotten a lot better in terms of of the awful SIBs (self-injurous behaviors). He doesn't bang his head on the floor anymore. That stopped when he learned how to walk. I think he mostly did it because he was so frustrated that he couldn't do things or communicate and he did it in order to control his environment-("I DON'T WANT TO DO THERAPY NOW").
Now I hardly ever see him do it at home; although he does come home from school sometimes w/ bite marks on his wrist or some bruises on his face. When we go to Grandma's house he also does it...The weird thing is that he only does it around certain people; that's how I know he just does for attention and for the reaction he gets from those certain people. The only problem he has at home now is the constant LOUD SQUEALING and bouncing off his bed, couch, stairs, etc...
But thanks for the suggestions; I'll try and figure something out (for my sanity). I might just get him a TSS (wraparound) for a couple of hours a week.

Helen Harrison said...

Headbanging and related behaviors are discussed in the article with the URL listed below,along with the phenomenon of seemingly purposeful control of self-injurious behavior in certain circumstances. You may have to join Medscape.com to gain access, but it is free and easy to do.

http://www.medscape.com/viewarticle/442029_5

I've found several other articles discussing biting oneself and headbanging as part of ASD, for example:

Canitano R. Self injurious behavior in autism: clinical aspects and treatment with risperidone. J Neural Transm. 2006; 113(3):425-31 (ISSN: 0300-9564)
Risperidone does seem to help.

And there are numerous other articles talking about ASD being related to prematurity. (I'm preparing a bibliography which I will post here soon.)

One study examined tocolytics, specifically terbutaline, as a possible cause of ASD in preemies. I suspect it is more complicated than that, but the study is still quite interesting.

Susan L. Connors, MD; Dorothy E. Crowell; Charles G. Eberhart, MD, PhD; Joshua Copeland; Craig J. Newschaffer, PhD; Sarah J. Spence, MD, PhD; Andrew W. Zimmerman, MD.
Beta2-Adrenergic Receptor Activation and Genetic Polymorphisms in Autism: Data from Dizygotic Twins J Child Neurol. 2005;20(11):876-884.

Helen Harrison said...

I was trying to recall if Ed ever engaged in self-injurious behavior, and I can't recall anytime that he actually tried to injure himself on purpose.

However he used to pitch the most incredible tantrums -- usually having to do with something like a noise-- or a word related to a thing related to a noise such as the word "elephant."

The sound of elephants trumpeting scared the living daylights out of him, but he was also fascinated with them and preoccupied with them.

One night when I was out of town, his sister came in while DH was putting Ed to bed. She said to Ed (in all innocence) "Good night, sleep tight, don't let the pachyderms bite!"

Ed went *ballistic* and it was all DH could do to hold him down on the bed so he didn't hurt himself. DH was amazed that Ed's screams didn't summon the police to our door.

There were many other times, one in particular when Ed had just been given chloral hydrate in preparation for an EEG. He went totally berserk and again we had to hold him down for hours to keep him from inflicting major damage.
Needless to say, the EEG was never done.

I am glad to say that Ed doesn't behave this way much any more. He has calmed down considerably with middle-age, and with his growing trust in the world. When he does get out of control now, it's almost always a sign of intracranial pressure.

buddhist mama said...

Thank you Helen,PE, and Carla. That is why these blogs are so wonderful; you ask a question and actually get a response, unlike the doctors office where nobody seems to know what the xxx you are talking about.
Really appreciate the literature refs, Helen. INteresting about the androgens, I read a study about mixed gender twins and apparently girl/boy twins affect the girl in a specific way, as she is in an androgenic enviromenment in the womb, the androgens coming from her brother. I don't have the ref here but will email it to anyone who needs it if you write me off my blogger identity page.

Carla said...

Buddhist Mama: Interesting what you said ..."study about mixed gender twins and apparently girl/boy twins affect the girl in a specific way as she is in an androgenic environment in the womb, the androgens coming from her brother." I'm not really sure what an androgenic environment is but I have girl/boy twins with only the boy having the SIB issues; then again he's the one with all the brain damage.

Anonymous said...

To Helen - I have a 24 weeker surviving twin and am relatively new here. Was your son a preemie? Can you tell me a little about his start to life? Lisa

Lori said...

My husband and I are 19 months into a 28 weeker. He is doing very well to date. So far doing everything on time, etc. But I think just the worry of this first 1.5 yrs has caught up with us. We of course worried in the NICU, but also when he got home. We worried about RSV and his health, but most of all I found myself fretting about him meeting his milestones.

My husband and I both describe it as almost holding our breath to see if he will do it all on time. We have been grateful and lucky he has.

But there are only about 2 people we trust to leave him with and as such this has drastically cut down on our time alone together.

We are both just coming to the realization that we MISS each other. We were even commenting that we both feel as if we are not the same person and wonder if we can get back to being "who we were."

We have also said that had we had this happen to us at a younger age we would likely be divorced because our coping mechanisms back then are not what they are now. We are mid 30's.

I wouldn't trade a moment of time with our precious son. But, I find myself wondering how much of this would be the same though if he were full term? I guess there is no way of knowing.

What I do know is that there are just some days I miss the old me and the old hubby...before we had this happen to us. This blemish of prematurity will always be with us I think. Even if our DS grows to be largely w/out problems it is the loss of innocence that has changed us I think.

The innocence we had when I got pregnant and we looked forward to the fairy tale pregnancy where I got to get as big as a house, give birth with DH present, and have a chubby crying newborn laid on my chest.

I think the fear has changed us forever. Gratefully we love each other at a very deep level and realize we have let too much distance enter into our couplehood. We have had 2 date nights in this last month....progress!

Good topic Stacy. Thanks for touching on this. It lets me know we are not alone.

Lori

Helen Harrison said...

To Lisa who asked about my son Edward's life:

He was born at between 27 weeks 6 days(my dates from LMP) and 29 weeks (neo's dates on examination)in 1975. He was gravely ill at birth with listeriosis.

Listeria is a food-borne organism that afflicts pregnant women (and, rarely, others), usually killing the unborn child.

Ed was born essentially dead with a pH of 6.9. We were told he was going to die and that we shouldn't even hope. Nevertheless he was intensively treated.

After diagnosing a major brain bleed, the neonatologists thought Edward should be taken off the vent and allowed to die. We agreed, but the neos first wanted to wean him of phenobarbital (presumably to give him a better chance at breathing on his own if he could).

After Ed had been weaned from phenobarb, we went to the hospital expecting to hold our baby as he died, but instead of removing Ed from the vent, the settings were simply turned from full scale mechanical ventilation to CPAP.

Ed's blood gases looked good under this new regime (which I credit with sparing him from BPD), and here he is today.

However he survived with moderate CP, retardation (IQ of 59), autism, severe vision impairment, and worst of all for him-- and us -- hydrocephalus.

He is 31 years old now and lives at home with us. He has had about 15 surgeries since he left the NICU, and there have been many gruesome complications. These are very hard on him since he is too retarded to understand that the pain and medical trauma is for his own good. It seems like random torture to him.

It is also sad for me to realize that many other preemies and their families are struggling with even more complex and painful lives.

However, I'm glad to say that there are many positives in our son's life as well. He is happy when not having medical problems. He is a "savant" with a number of interesting skills and abilities. But he is still too disabled ever to live independently.

After Ed's birth I wrote a book for parents of premature babies which led to my becoming part of research projects on outcomes of prematurity and family centered NICU care.

In the course of writing my book and participating in outcomes research, I have interviewed in depth over a hundred preemie families and former preemies, and have come to know maybe 1000 more, via the Internet.

I don't think the problems of preemies are being adequately addressed by the medical profession, our educational system or society at large.

I am working on a badly needed update to my book (The Premature Baby Book, St. Martin's Press) now, as well as several other NICU related projects. I try to keep up with neonatal research by going to the major conferences, subscribing to the major publications, and with the help of neonatologists and other NICU professionals who encourge me in my work.

I have tried to bring neonatal information to parents, and information about our children's sometimes bewildering problems back to the neonatologists.

More to come about Edward...

liz.mccarthy said...

I've just sent a link to this post to my husband to read . Your description of the troubles you and your husband face sound exactly like my situation, it a way it is "comforting" knowing that my stress over my relationship is similar to others in our situation.... Liz M.