Where did that come from?

I've shed many tears since Paige was born. Through the NICU period, her first few birthdays, milestones, through the feeding issues, after doctor appointments, through procedures, watching her in various stage performances (ballet, piano, gymnastics, plays, etc) and on and on.

Her early birthdays were hard. It wouldn't take much and I would be a ball of tears. Equally as difficult were the years of procedures and doc visits. As soon as she would be safely tucked in bed I would fall apart, thinking how unfair it was that she had been through so much, especially when there was no end in sight.

As the years go by the tears of sadness or tears surrounding the remembrance of struggles come less and less, to the point that they are virtually non existent now. Every once in a while those tears come out of nowhere and catch my off guard.

That is exactly what happened on Friday. I took Paige (and my MIL's hubby) to a health and fitness expo. Paige loves any and all things medical so I thought it would be a great experience for her and a wonderful homeschool opportunity as well. What I was not prepared for was the fierce emotions that would literally take my breath away and leave me scrambling to hide my tears from Paige. What caused this reaction? I managed to snap one picture before I had to stop and try to regain some composure.


Right before I took this picture I turned to my MIL's hubby and said, "Wow, doesn't that bring back memories?" as we were looking at the monitor (on the left in the pic). I swear I was transported back into the NICU. I felt sick. I felt the tears coming so I opened my eyes real wide, hoping to dry them out quickly. I kept telling myself to breathe but it wasn't working. The background noise started to sound muffled and my lips were tingling. Then it hit me; I was in the beginning of a panic attack. Geesh! 10 1/2 after the NICU and it came back that easily. Even as I am typing this post, the tears are there.

I was able to regain composure in enough time to actually listen to Paige asking such wonderful questions to the doctor that was operating the Simm baby. When she asked, "Is the blue light coming out of the baby's mouth supposed to signify lack of oxygen?", I almost lost it all over again. But, then the doctor praised her for her question and she turned to me with this bright, proud smile and I proudly smiled back, giving the thumbs up.

The best part was that Paige never realized what had happened to me.

Post Traumatic Stress Disorder In Preemies

While reading a post about childhood PTSD over at corpus callosum, it brought me back to our discussion on PTSD here on this blog, and how parents of preemies endure so much continuous stress from their NICU experience and subsequent thrust into parenting a preemie.

I wrote to the blog author and asked his thoughts on whether or not preemies themselves could be suffering from PTSD and what could be the cause of the mental health issues they face in infancy and as they get older.

He was gracious enough to write a post on the subject.

http://scienceblogs.com/corpuscallosum/2007/05/do_vlbw_preemies_get_ptsd.php#more

As I speak to various docs and read studies on the long term effects of prematurity and learn what is being done to improve the outcomes, I hardly hear anyone discussing mental health issues. Thank you to Corpus Callosum for addressing my question.

Out of all of the long term effects of prematurity that Paige currently deals with, mental health is the hardest to treat. It is takes its toll on her and all of us in the house. She suffers horribly at times. And, because we have to deal with the "she looks good to me" mentality, it's hard to find help. She is not alone. I talk to many parents who are at the end of their rope because of the behavior of their preemie. Adult preemies suffer as well.

How can we help future preemies if no one will acknowledge the mental health issues that plague our kiddos?

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.