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.

Wednesday, July 15, 2009

Unimpaired Outcomes for Extremely Low Birth Weight Infants at 18 to 22 Months

**After talking with Helen, I have decided to make a separate post out of this study, which Helen cited in the comments of the previous post, as to make sure it doesn't get lost in another topic.**

Helen Harrison writes:

I have just seen a study In "Pediatrics" from the NICHD entitled "Unimpaired Outcomes for Extremely Low Birth Weight Infants at 18 to 22 Months" which contains some rather shocking (to me, at least) information, indicating that current outcomes are even worse than I thought.

[Gargas, Vohr, Tyson et al. Pediatrics 2009:112-121.]

This study looked at outcomes (both by gestational age and birthweight) of 5,250 children born weighing less than 1000 grams between 1998 and 2001 in NICHD study hospitals in the US.

"Unimpaired" was defined as Bayley Scale scores equal to or greater than 85, a normal neurological exam, normal vision, hearing, swallowing, and walking.

This study offers a new perspective on outcomes since "mild" (and sometimes "moderate")disabilities -- which most of us parents would consider fairly severe -- are lumped in with "normal", "unimpaired" outcomes when neonatologists and other professionals give outcome information to parents.

This is, as many of us have learned the hard way, highly misleading.

So the NICHD researchers set out to record just how many children were actually free of impairment by the criteria above, at age 18 to 22 months.

We parents also know that 18 to 22 months is much too early to determine some pretty devastating outcomes of prematurity -- autism, for example -- so even these numbers may be overly optimistic.

Here's what they found:

Less than 1% of children born weighing less than or equal to 500 grams survived to be normal(that is, "unimpaired" at 18-22 months).

From 501 to 600 grams it is about 5% unimpaired;
701-800 grams about 15 % unimpaired ;
increasing to 24% for infants 901-1000 grams.

By gestational age: <1% at 23 weeks are unimpaired;
< 5% at 24 weeks;
about 15% at 25 weeks, and
about 24% at 27 and 28 weeks.

(I'm reading some of this from a graph so I can't cite exact percentages.)

After 27-28 weeks gestational age, infants born at 1000 grams or less are small for gestational age as well as premature -- an additional risk factor -- and the percentages of unimpaired decline again, so that, for example, less than 20% of children born at 31 weeks weighing 1000 grams are unimpaired.

Saturday, July 11, 2009

Thoughts From A Pregnant Preemie

Just to provide a little background, I am 26 years old, and I was born at 29 weeks gestation weighing 3lb 13oz. I was in the NICU for nearly 100 days before being brought home. My mother also had a second daughter two years after me, who was born too early to survive.

From the day I found out I was pregnant, I felt my joy and excitement tempered by worry. My mother had preeclampsia and recent studies have suggested a hereditary component which might put me at a higher risk of delivering my child prematurely.

I feel like most people don’t understand the challenges that I have faced as a preemie, since it has left no visible scars on me. As a result, no one seems to understand why I am terrified that my son will make an early entrance “because look at you, you’re just fine.” Either they don’t understand what kind of issues preemies can suffer from and think they’ll be just like a full term baby only smaller, or they think I’m being paranoid and shouldn’t be borrowing trouble.

I’ve never found that hiding my head in the sand solved any problems, and I want to be as prepared as possible in case my son does need to make an appearance early. It’s true that there have been tremendous strides in the care of premature babies since I was born, but the media tends to gloss over the real facts like survival rates and disabilities, while focusing on the ever-smaller miracle babies who pull through. I wanted to make sure I understood all the hard facts so that if there were any decisions to be made, they wouldn’t be based on emotion or popular misconception.

It really frustrates me though when people simply don’t understand the reality of having (or being) a preemie. They see the success stories, or are assured by doctors that preemies catch up by age two. No one seems to pay any attention to the ones that don’t. It makes me so angry when I see women in their third trimesters (or even second trimesters!) talking about how they can’t wait for the baby to be out because they are so uncomfortable, or begging their doctors for an early induction. At least in my mind, my baby’s health is far more important than any amount of pregnancy discomfort that I will suffer; I will gladly endure whatever’s necessary to keep my son inside me until it is safe for him to come out. Will it be difficult? I am sure it will be. Pregnancy is no picnic for most women, but who ever said that being a parent was easy? It’s all about making the best decisions you can for your child, and that means putting his/her health ahead of your comfort.

On a pregnancy message board I frequent, they have a tradition of celebrating “V-day” when they reach 24 weeks, or viability day. It makes me so frustrated to read those posts because most of the women seem to feel that once they’ve reached that point, they are safe. Their children will be fine, just a little small. I wish there was some way to show them the reality of a 24 week preemie, the heartache of the NICU roller coaster, and the possibility that their child still may not survive or be severely disabled. It boggles my mind that people can truly believe that a fetus just barely halfway through a normal pregnancy would be just fine if born.

Am I being negative? I think that I’m being a realist. Some children who are born as early as 24 weeks may suffer very few visible effects of prematurity, or they may not appear until adulthood. I can testify to that. But the majority of babies born this early in pregnancy will have lasting issues and many will die; I don’t see that as a milestone worth celebrating.

I’m currently in my 26th week of pregnancy, and aside from having a few scary moments in the first trimester when we thought we were losing the baby, I’ve had a fairly normal pregnancy so far. Due to my family history, I’m being carefully monitored for any warning signs. Every time I feel my son kick or move inside me, it’s the most wonderful feeling in the world. I would do anything to keep this little one safe and healthy, and in the womb until he is fully developed and ready to be born.

I just wish there was some way to help more people understand what a serious issue prematurity is. Kudos to Stacy for helping to show people that there is another side to prematurity other than the warm fuzzy one that the media chooses to publicize.

When I was a little girl, my mother always told me not to wish my life away when I said I wanted to grow up faster or be older. Now that I am pregnant with my son, that comment rings even truer for me.


**Note from Stacy... Ok, before you click on "publish your comment" please keep in mind that the person who was brave enough to share her thoughts with all of you is PREGNANT, in a high risk pregnancy no less. Do NOT sling drama her way. If there is a topic within her post that you would like to discuss further, please post your request in the comments or email me and I will gladly make an entire post out of the topic.**

Wednesday, July 8, 2009

Thank You

Over the past few days I've typed and re-typed this blog post many times. I can't seem to find the right words to say what's on my mind and in my heart.

I have appreciated all of the emails that I've received. See, even that isn't sounding right. Appreciated? Does the meaning of that word really convey what I'm feeling? Is the word strong enough? I hope so.

I had always hoped that this blog would help someone that needed to not feel alone; someone who may be wondering why their child had not caught up and they were beyond the magic age of 2 or 3 or maybe someone who was dealing with raw emotions that were scary. But, the blog went way beyond my expectations which became evident by the number of emails I have received since going on hiatus.

Thank you.

Simple words-are they strong enough? There I go again. I'm not going to try to find any other words or else this post will never reach the blogosphere.

Thank you to everyone who has written to me. Please don't take my lack of response as a lack of appreciation. Please. I've run through a gamut of emotions and needed to let it all soak in. I am so thankful that the blog has helped so many and I still read those wonderful emails when I need to be reminded that there are good people out there.

What I was not prepared for when I started this blog was the anger and negativity that would be directed toward me and those who comment here. My skin has thickened over the past 2 1/2 years of blogging with each and every insult and rude comment that was thrown at me. But, that thickness becomes paper thin, still to this day, when the attacks are directed at others. It was easy to walk away from blogging to avoid that gut wrenching emotion that takes over my entire being when people start being nasty to each other.

Easy to walk away... yes. Easy to stay away... no.

I will be posting an entry from a guest blogger in the next few days. It was her story that brought me back to blogging. I am asking everyone to keep an open mind. Not many of my readers can say they have ever been in her shoes-not completely. You'll see why. Her words are important. Every parent of a preemie, especially preemie girls, should read her words carefully. Every pregnant woman should take note. Above all else, I am asking that everyone be kind to her. There will be topics in her post that warrant further discussion which I will gladly make a separate post so the drama will stay separate. I will not allow drama to be thrown her way!