Sunday, July 19, 2009

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.


Kristie McNealy said...

I think that would have been my undoing as well. The worst I've experienced was having to walk through the hospital where C was in the NICU, a couple of years after the fact. It was for something totally unrelated to her, but it still freaked me out. Thankfully, I was alone, so no one noticed.

There was also the time the OB called when I was 32 wks pregnant with my son, and told me my ffn was positive, and I needed to come to labor and delivery right away. I completely freaked out as soon as I hung up the phone. I remember calling my husband to come home, and I kept sobbing and telling him that I couldn't do "this" again. Not that I had a choice in the matter.

I'm glad Paige got to have such a cool experience though. Those sim dolls are becoming really cool.

MommaWriter said...

Oh gosh, Stacy, you had me at the photo of page with the Simm baby. I had a massive breakdown outside the NICU of the hospital where I had my daughter, during a hospital tour...while I was still pregnant! My son hadn't even been in the same hospital. I'd gotten past the point in my pregnancy where he was born and I'd been feeling pretty good about baby #2, so I was totally blindsided...and blindsided again was she was born a week later and I got to see the *inside* of that NICU.

*Peach* said...

I'm only 4 year out (1.4 pound son), but your post almost made me cry just feeling your pain. I totally relate with the tears and emotions welling up out of nowhere. Thanks for sharing. Hugs!

Anonymous said...

DD is eight, so *those* moments don't come as often as they once did. I have definitely had them, though, and in the setting pictured, it would probably happen again. When DS was born full term by a scheduled c-section, I definitely had flashbacks to DD's birth (even though there was NOTHING of the drama or worry for DS that there had been for DD). Fortunately, I had mentioned to the drs ahead of time that I was afraid of what might happen, so they were ready for my anxiety attack. As it was, I still concerned them. MommaWriter's post reminded my of the 1st time we went back to an NICU reunion. The "party" was on the far side of the hospital from the NICU, or I might not have gone through with it. There were tours of the NICU itself, which I could not go on. I told DH the mere thought of touring the place for fun made me feel sick to my stomach. That was when DD was about 3. When she was about 6, we went back to the 2nd NICU reunion. This time, we did do the NICU tour. I think the reason that we did was #1 DD was old enough to be curious, and we thought she deserved to see it, and #2 they had just completed a major renovation. Since I had never set foot in the new NICU before - which was much different from how it was when DD was there - it was not nearly as bad walking through as I had feared it would be.


Kate K. said...

We are not quite two years out from the NICU experience. I was at an academic conference in May; it was the first time that I had attended that particular conference since our son was born. I had the wind knocked out of me when the president of the association gave a speech on "resilience," her topic of study. Her final point in the speech was an anecdote based on her NICU experience with 24-weeker twins 19 years earlier. She described in detail how the NICU sounded and looked. While her speech and topic were excellent, that anecdote was a bit too vivid for me. I willed myself not to cry and made it through the speech, at which point I quickly went up to my room for some deep breaths.

terri w/2 said...

What you are describing, Stacy is PTSD.

tbonegrl said...

This post really brings to light something I have been trying to deal with through therapy and something all preemie parents should be monitored ofr post-discharge: PTSD. Mine is severe...the sound of the beep of the monitor can send me into a panic. When my best friend had her baby and I went to wash my hands before holding her, the smell of the soap made me sob at the sink. PTSD is a very real and very sad issue for many preemie parents that is rarely discussed.

Therapy is really helping me...

Donna said...

I had the same thing happen to me going into Wal-Mart of all places... started to cry walking through the doors because of all things to have on display for March of Dimes in the store was an isolett. Stranger things have happened, I'm sure... but I just teared up and I don't cry easily!

Kyrsten said...

Joshua was back in the same hospital for eye surgery at 18 mos. old... I was 3 mos. pregnant with (surprise) Jaydan, so I wasn't allowed to be there as they prepped him... Hubby carried him down the hall-- and came back absolutely ashen. He and I both "lost it" in a side corridor, just reliving it all... I doubt the doctors saw two parents run faster when they came to take us to recovery, afterwards.

I *still* lose it --and make no bones about it-- when people speak of deceased loved ones... but I still haven't shared with ANYONE what my firstborn's last hours were like. I can't. I don't think I'd survive the telling.

Laura (aka Waldenmommy) said...

I am only 8 months out of the whole NICU. I have a deep, burning desire to take him back and say "see? Look how he is doing? See what your job does? THANK YOU!" But I don't think I can handle it. I was, however, able to hand him to the neonatologist who transferred him and discharged him. Baby was six months old and we were at the March of Dimes. I would love an NICU reunion OUTSIDE of the hospital, though! Perhaps one day I will have the stength to walk to to the NICU and give them a pic for their brag wall.

Ben & Kara said...

I drive by the hospital where my 23-weeker was born twice a day every weekday. I don't think much about it, but the other night, I went to an evening event in the same neighborhood and got lost on way home. I used the hospital as a guidepost to find my way again. For some reason, the fact of looking up at that building late at night just made we weep for him. It's been almost three years, but it's just as raw as if was yesterday. I don't think we ever get over it.

mommyto3supercuties said...

Back in 2003. Having had my 1st baby Lilike admitted at 1 hour old on June 25th) pale with rib retractions and in need of 23-28% 02 blown into a humidicrib for less then 24 hours before being taken off 02 on the morning of (June 26th). She was not 24 hours old until 2:05pm on (June 26th). That day she was given her 1st bottle she cried for. And she was given a 5 day course of iv antibiotics followed by a further 2 days of antibiotics via thigh injections due to suspected sepsis from a high white cell count, with a band neutrophil of 70% with toxic changes only present on her day of birth.

Where she stayed in the same neonatal unit as your Paige
Flinders Medical Centre NNU.

I commend you on staying stronger then me sweetheart. Your strength is amazing. Your an amazing and very loving mom to Paige and Tyler.

As your daughter was a preemie princess whos stay would have required both intensive care at the back of the neonatal unit and having had ongoing care in the NNU.

When Dr Peter Marshall
said to all the nurses when our daughter was 4 days old that she could go home. After ignoring the 1little nurse who kept saying over the top of his conversation to all the nurses "No don't let her go upstairs and don't let her go home"

She came to me and said please don't let her go home and then told me the doctor told me hes changed hr midn about letting her go home. Out of fear that if I took my daughter home she might get sick and thinking the nurse knows whats best for my daughter I agreed with her for my daughter to stay in the NNU.

The middle aged blonde and stocky midwife Robin. From upstairs ward
4C who was asked to care for our baby had grown angry at us saying it took alot for a member of medical staff to see to it that we could have permission to have our 5 day old daughter upstairs with us. We then filmed the midwife being sweet to our baby calling her love and darling and acting all nice to us on camera as she gave Lilike her 1st bath.
Only to face fear when after she cryed alot from being taken out of the bath that after she had been listening and looking at daddy talk to her she arched back her head and made an ahahhh sound and fell sleepy. The midwife after lettign us have a short hold of her and took her back into the corridor where I saw her showing Lilike to a man-possibly a doctor. The midwife then rushed her downstairs into the lift with us telling us to go with her saying to us sick babies don't belong upstairs.

It was then that NNU staff rushed quickly trying to get a needle in to her to try and find a good vein that would take well for placement of a new iv for the antibiotics, all the while our daughter thrashed about, red faced and screaming so much it was heard through out the whole NNU!

We were told we had 2 options to consider. Scalp iv was the kindest option for her, it would require that they shave a little bit of hair from her scalp, and then there was thigh injections that would hurt her. I agreed to the scalp iv because I thought they knew what was best for her. Then I went to the toilet to vomit adn wash my hands. I came back for the shaven off hair hoping they had not binned it. And they told me they had done the thigh injections for her instead and that she had coped well with them.

momto3cuties said...

I had remained positive from the start of my daughters NNU stay. That my daughter would be ok. On the night of my daughters birth. There was a nice nurse who told me she might have stress and then the rude asian nurse asked to care for her the 1st night of her life. Who glared at me for visiting her and looking at my baby through a closed humidicrib. She told me I would start a code blue if I touched her foot because I said her feet were cute behind the closed humidi-crib. As one of her feet had a pulse oximeter on it. Same rude nurse told me she thought she had an infection, But I did ask for her honest opinion on if she thought it was just stress or an infection.

She then was upset when I asked her permission if I could please attempt a breastfeed. She grew uspet at me for that and when she saw my daughter latch on holding on to my hair she told me your dhair is in her way and demand I put my hair up As soon as I went to put my hair up she unlatched and I gave up on breastfeeding the 1st time handing her back to the nurse.

I was not allowed to put our booties on my baby in winter. I was told it would overheat her. I was told to discharge myself and go home after 3 days as another mom with triplets needed my room-which I considered was a very fair request.

But then being told to only come in an visit my baby for 10 minutes each day to just attempt a breastfeed and then go home was really rude.

momof3cuties said...

I broke down in tears after I was discharged home without my 6 day old daughter. After seeing the midwife had requested they had put in a NG tube in my 6 day old baby who was a champion bottle feeder all because the midwife thought she was sick as had always refused the breast since her 1st feeds and ongoing feeds were bottle feeding and no real attempt at the breast as the nurses were 2 busy to help. I told the nurse I don't want to come in while she remains in the hospital as you keep doing medical procedures on her. After the nurse warned me you could loose your baby to someone else if you don't visit her in the hospital.

All her tests were inconclusive with no high or low white cell counts, no toxic changes and no identifable infections. With no poor bottle feeding. And no need for oxygen. I was told babies who bottle feed and not breast feed can still be considered sick if they were born sick.

I never new such stress was possible. Until I had a infant in the NNU who had been born sick but who was never in need of intensive care.

It was nurses like Nikki and Jenny who I was blessed to have care for my daughter only a few times. They were the most wonderful kind hearted souls that I had ever met. They brought peace to the NNU. I wish they could have been my babies nurses each shift of each day and night.

I mostly got stuck with rude nurses, each shift change in the admission area brought with it a new nurse who was unfriendly with wanting us the parents out of sight from the NNU and came complete with a judgemental attitude

On day 8 of her life it was time to room in! But at the end of the 1st day of rooming in at night the nurse knocked on our door to check on her. On the chart we were requested to fill out the nurse wrote baby is pale. And we wrote under that baby is fair skinned she then wrote under that baby is happy! Instead of the hospital gown she had worn the nurse gave us a sleepsuit to keep her warm and we took her back to rooming in. Day 9. 4th of July 2003. Baby lost some of her full term birth weight of 7 pounds 1 ounce but was still well above 6 pounds. And the nurse was worried. Doctor said it was normal for babies to loose birth weight after the birth they would soon gain the weight back and more. We were told to fill out a feeding chart at home and bring her in for a weigh in the following week after her discharge. When we had brought her in to the NNU for a weigh in after her discharge. The scales shown she had gained weight at home.

My youngest daughter born in 2008 guzzled down her 1st bottle after birth, since it was a bitterly cold winter night. And after dropping her temp 3 times being brought back up each time by an excellent midwife. While she was upstairs and moaning for 12 hours a dummy of her own stopped her moaning and then the midwife decided she did not need to go the NNU to be put in a humidicrib, the same NNU that Lilike had stayed in.

I wonder how much the NNU has changed since 2003

Preemie Miracle said...

I haven't commented this time around. BUT then I went to target. Yep. Target. They use the same soap as the hospital. I can't go in the bathroom there without wanting to throw up.

buddhist mama said...

This is off topic, but can you please please do a story on PTSD and the NICU in teh next week? I am offering to be guest writer/editor as you have done in the past if you don't want to write it.

To all parents, you have not already seen it, am sure you have all seen the NYTimes piece on PTSD and the NICU. YOu must read it! very moving, my husband and I both cried when we read it. I just thought you might want to seize the media/blitz while the story was hot Stacy, and I have studied PTSD as well as had it myself, so I think it is an important topic. More on that in a subsequent post but I don't want to get too off topic here and set a bad example.
all best, buddhistmama (aka Kim Gutschow)

buddhist mama said...

HI folks,
I have now read the comments more fully and realize I am not off topic as several of you are already talking about PTSD.

Here is the full story and again, Stacy, can we have a full post just on PTSD? with teh NYTimes story as a link ? Here is the story for those of you who have not seen it. Why does this matter and why should we care.

Let me quote from a letter I just sent to the Neos and parents council at the lovely DHMC NICU where my twins spent 11 weeks in 2004.

"Clearly there are more than a few people who suffer from PTSD and we would like to be of some service....

The NY times piece noted that a scientific study comparing parents of children in NICU's who had mentors with those who did not had less PTSD 16 weeks after the birth. Personally, it would have been hugely valuable to have a mentor that I could have talked to while I was at DHMC with my twins for 11 weeks in 2004.... I truly wished there had been an offer of email or phone contact with ICN grads. I have been thinking about what model works might work best and a fixed coffee hour or face to face contact is less than ideal. I know that similar mentor/buddy programs exist at several other NICUs in our collaborative. "

The person in charge of the parents council wrote me back today and said---we already have a program run by the March of Dimes, yadda yadda, why do you want another network?

I wrote back and said:
"I don't think we need another HUGE, nationwide, support group---there are 10-20 existing groups including the one the March of Dimes is now spending lots of money on. I have joined these groups and preemie listserves. On the pro side, I have made some of my best internet friends (HELEN, Stacy, others I am forgetting) through a discussion of our shared trauma in this medium. They have provided me excellent information regarding prematurity. Yet these groups remain large, anonymous, and often overwhelmed with daily messages. "

What I am trying to do at DHMC is create a smaller, more accessible group of people whose children, like my twins, were at DHMC. These parents will all have had similar docs, nurses, fellows, respiratory staff, and other staff, the same facility, the same protocols, and many of the same situations that I have had. They understand my questions and concerns in a way that a national listserve of preemie parents does not. "

can some reader of this blog tell me:

1. Do you think it would be useful to have a network of parents just from your own NICU to talk to on the web?
2. would that serve a different purpose than this blog? Not better, not worse, just different.

I would be interested in the responses.

ThePreemie Experiment said...
This comment has been removed by the author.
buddhist mama said...

Ok, but I gotta just say can we share stories for now. About crying or other weird things that happened. let's just stick to personal stories...

My tears have come at strange places. For the first three birthdays I was subdued but happy. My tears came around my twins fourth birthday, which was their first birthday after my third child, yeshe, was born--not premature, home birth, not at all traumatic. I was in bed, with DD, and suddenly I am awake, mind racing, heart pounding, classic PTSD syndrome. Moreover, I think I hear my twins respirator sawing away. Then I look over at the little basinett that was one foot from my pillow where DD lay sleeping quietly.

It was her breathing, not a respirator. But an odd kind of confusion.

One would think the sound of an infant breathing is reassuring. But in this case, the sound was anything but, since it triggered the PTSD, which I realize was brought on more remotely by their birthday. This is all an incoherent way of saying that I think there are so many factors, large and small, conscious and unconscious, and when they come together, we either ignore, repress, and call it coping, or we let our emotions run rampant and that, too, is a kind of coping. Because the emotions want out and need to be addressed.

For me, therapy has helped but I also tend to shy away the issue in therapy. There are way too many "convenient" forms of denial like talking about why my husband didn't take out the garbage again...