20/20 tonight

I just saw a clip on the ABC World News about 20/20 tonight. “Babyland” is the title of tonight’s show. It is on the problem of infant mortality rate/prematurity in the US. I already did not like the intro. They said if more women got prenatal care the rate of premature births would dramatically drop; then they zoom in on a micro-preemie. The above statement is correct but it a gross exaggeration, IMO. All the months J was on the NICU and the 2 years I worked there most babies did receive prenatal care. A lot of reports take this angle and it is soooooooo often not the case!

After, I watch it tonight I will update this post w/ my opinion on what I saw.

** update – Ok, I watched the show. It was totally focused on Memphis, TN and the rate of infant mortality there. Apparently, it is the highest in the country. They focused on the inner-city and the mom’s lack of prenatal care. Everything they said was true, it is important that women get prenatal care. The problem I have of most of these type shows is that they make it seem if all women get prenatal care then premature births will magically disappear. That is not an entirely true statement. Guess what? I did everything my doctor told me to do during my pregnancy, but J still came 4 months early. Another thing that really was tacky thing they did, IMO, was they put a price tag on the babies. The reporter was walking through the NICU w/ the neo and she looking at the different babies and asking how much each of them was going to cost. This one is going to be $35k, that one going to be $500k, etc. I know she was trying to make the point that prenatal care is much cheaper than these amounts but really was that necessary?

What they don’t tell you about prematurity

Stacy at The Preemie Experiment posted this yesterday (I hope she does not mind me copying the post ), and it is worth a read.

Invisible Issues Related to Prematurity

Wheelchairs, glasses, feeding tubes, leg braces… all are outward signs of prematurity . If you need services at school, you’ll get them. If you go to the doctor, they listen to what you have to say. Neighbors understand why you are tired. Family offers to help.

Advances in medicine and interventions have lowered the number of children who need those devices. For this I am thankful. My daughter does not (currently) need any of the above (although she did wear leg braces for a few years).

But, there is another side to prematurity… Invisible issues. They are clear as day to us parents and the preemies that experience them but invisible to the outside world and largely ignored by the medical community.

anxiety disorders
sensory integration issues
psychiatric issues
behavior issues
fine motor delays
fatigue
feeding issues
weight and growth issues
reflux issues
head aches
autism spectrum disorders
coordination issues
sleep issues
severe constipation

Over the years I have heard many parents say that they were blamed for the above issues.

I am also one of those parents who was blamed. For a brief moment I believed it. (I must not be feeding her enough, I must be babying her, I am not strict enough, etc) But, as I started talking to other parents I realized that other preemies were suffering with the same issues.

If you are thinking, “these issues are not that bad” then you have never lived with a very young child who stabbed herself because her “thoughts” told her to. You have never lived with a child who has such severe constipation that, despite adult doses of Miralax, can still tear herself bloody when she has a bowel movement. You have never lived with a child who will drop to the floor and scream when hearing a voice on the loudspeaker. You have never lived with a child who will cry because she is so tired that she cannot run with the other children.

These invisible issues are what makes me continue to fight to get the word out. Why should any parent feel responsible, like I did, when the above issues are actually commonly reported by parents of preemies? Why should I stay quiet and let the doctors feel that preemies are fine after age 2? How will conditions improve? How do we expect the doctors to know?

I’ve been told that my posts sound angry. Since true emotion can be misunderstood, I want to be very clear. I am not angry. I was the one who chose to have the doctors save my daughter. As it stands right now, I cannot look at my daughter and honestly say that I would choose differently.

Frustration is the emotion that I feel. Frustration that misinformation is still the norm when it comes to preemies. I feel an incredible sense of duty to be a voice for future preemies and their parents. I am thankful that I am not alone in this passion.

I have really taken a lot away from Stacy’s blog. It is alway a welcome resource to read or hear from parent’s who have BTDT. Parent’s of extremely premature little ones still have a lot of uncharted territory. J was born on the edge of viability. If I had delivered him even the year earlier his chance of survival would have been very rare. These invisible issues I feel sometimes can be harder. W/ J, we seem to cycle. His behavior seems to get REALLY BAD before he hits a maturity growth spirt. Right now we are enjoying a lull in bad behavior. He is able to tell us his wants and needs better. I hope it continues.

One aspect that I have been very lucky in is that we have NEVER had doctors question us or our parenting. We have had and continue to have very supportive medical community. Our pedi tells J every visit that J is allowing me to earn a very special place in heaven daily. His office is very stimulating for J and J wants to experience it all and not to take time to have the doctor’s visit.

I guess I just hope you take away from this post is that don’t dismiss what a parent says they are dealing with just because their preemie looks “normal.”

I want to also have everyone check out Lauren at Cheers Y’all. She is in route to VN right now to pick up Emmett.

Today is also my little brother’s birthday. Happy Birthday A.

Tomorrow morning the social worker is presenting our home study to the agency.

An article “Premature babies feel pain but don’t show it”

This article was on the older preemie online group today. It talks about the pain scale for infants may not be entirely correct. Currently medical professionals look for facial grimaces, changes in the heart rate and desats. The article says that not all infants react this way. They said the brain response for pain without any physical signs. For most parents of preemies this is not surprising news. I have long believed that all the procedures J had in his first few months of life affected his pain sensitivity. I can’t imagine what he went through. He had a heel prick every day and when he was not doing well they pricked him multiple times a day. That is just the tip of the iceburg of what he was put through. I have always thought he has a diminished sense of pain or at least does not appear affected by pain. It has always worried me. How will we know if he is really hurt or not? Now that he is more verbal our fears a bit less, but I still worry.

We were supposed to have J’s “testing” by the behavioral psy. tomorrow. I had asked the office manager to call me back last w/ the price of this testing. It would be out of pocket so I really wanted to know. She called and told me it would be $850. (I am so in the wrong line of work) So, I in turn asked her what would we be getting from this “testing.” We had also talked w/ 2 depts (neurology and the developmental disability clinic) at Texas Children’s about getting him tested there. I know the neuropsych eval in the neurology dept would help a lot with educational planning. The testing in the DDC is a full battery of tests psy and medical. These both are more expensive than the $850 but see a worth to them. So back to the test scheduled for Monday. The office manager tells me that we will get a feel of what J’s maturity level is and if a dx comes out of it we could talk about that. In a nicer way, I said “are you freakin kidding me.” I told her that I did not know if their testing would best benefit us. I have a REALLY good grasp as to where J is maturity wise and have a pretty good idea of what dx he may be given. This information would benefit me very little. I told her to cancel his appointment and we needed to explore all of our options before I shell out close to $1000. So back to square one.

As for adoption news, we have our home study on Wednesday. Do you think we are ready? Absolutely not! We did accomplish some big projects this weekend, though. Thanks to little brother, J now has a fan installed in his room. The nursery is now back a nursery. It has been the junk room for the past year. The office/playroom is also clean. It has been junk room #2 for the past 2 years. I tried to finish J’s bathroom (installing the towel rack and toilet paper holder) to no avail. We could not get the towel rack secure. Where the old one was is on the other side of the wall from the light switch. When hubby tried to install the toilet paper holder the lights flicked so he must have hit something. Did not want to mess up the wiring so we have no place to hang the hand towel or toilet paper. This bathroom will be my demise.

It can all come back in an instant

One of the preemie list-servs I am on posted an article for us to read. It is a speech from a March of Dimes event, and it is a micro-preemie parent of twin from Dallas. I am always amazed at how quickly and easily I am brought back to that time in our life 4 yrs ago. It is nice to read these articles b/c it reminds you of the others out there that have similar experiences as us at least the three month roller coaster of the NICU. I also instantly brings me to tears remembering how hard it was. The stress during the adoption has also been hard, but no where near what the NICU was like. It is really weird to me how vivid the memories of that time remain. They have not diminished over the years and now I doubt that they ever will. They will always be a part of our story. Cheesy as it sounds and is, it’s the truth.

**side note As I write this, I flip the channel expecting the news to be on and catch the last 30 min of The Notebook. Glutton for punishment right.

We took J to the Behavioral Psychologist this week for an evaluation. Basically, they want to do further evaluations on him. So I was sent home with 5 more extensive questionnaires to fill out. I guess we will do that in July. The one thing we did talk about was J having skills (intelligence) beyond his age but speech/maturity years below his age. She said it is hard for parents to wrap their head around this b/c of the gap between intelligence and maturity. I took that to mean we need to lower our expectations for his behavior. I do not think I can do that. That is part of the further testing she wants to do. To see exactly where his maturity level is. We shall see.

Guilt rears it’s ugly head again

We found a Behavioral Psychologist to work with us and J. I spoke with her office yesterday and got the fees charged for the different services. She will work 1:1 w/ him and also has social skills groups. They do not bill anything with insurance companies and are out of network. So, I called the insurance company. Our mental health benefits are embarrassing. They pay max 30 visits per year and only about $40/session when the price is $150/hour. That is after we meet our $1500 deductible. Now is where the guilt kicks in— we can’t afford this with everything else we are doing with J and trying to pay for an adoption. Right now, speech is more important. I guess I we will have to deal with the behaviors for now. I do need to find resources as to how we can do behavior mod on our own. I am just out of ideas on my own. That is why we wanted to see a professional. Someone told me that an agency locally has a grant for ABA therapy for children under 8 y/o. I don’t think ABA will be a good fit for J. I still need to learn more about it. I plan on checking into this option. I just wish I had about an extra $15k/year to get J what he needs. Is that asking too much?

On a lighter note, we start our adoption education class tonight w/ CC. We should be signing the contract next week and turn in our book to be given to birth parents shortly after that. Moving forward again.

I have such a cool kid

Let me tell you a bit about our 4y/o son, J. He was born at 23 6/7 weeks (4 months early) weighing 1lb 8.8oz. He was in the NICU for 3 months and dealt with typical micro-preemie issues (BPD, ROP, PDA x2, Grade II bilateral brain bleeds, blood transfusions, and the list could go on). He was on O2 for 13 months and has been in OT, ST, and PT off and on his entire life. With all of these challenges starting out in life, he is doing great. He does have his challenges now and ahead of him but we are very proud of how far he has come.

J is in a preschool program for kids with special needs/developmental delays. His speech has exploded in the last year since he has been in it. Well, we were looking for a summer program to keep him structured during the summer. We thought we had found one that would be perfect. I filled out extensive paperwork and questionairres about J and where he is developmentally. It is a private school for children with language delays. In their marketing they state they only accept students w/ average to above average learning potential. Well, J is benchmarking on kindergarten work and he has speech delays. So, I think he is exactly what they are looking for in a student. I get a call from the placement person with the program. She tells me that she will need to observe J b/c she did not know if he was “a good fit” for their program. Are you kidding me? She said she did not feel that J was high enough functioning. They generally only accept students w/ only 1 yr speech delayed and J is 2 yrs speech delayed. So this is a special needs school who only accepts students with such a minimal delays that they do not need to attend this very expensive private school. So, I will keep J busy this summer doing many fun and therapeutic activities. And BTW, I get to save $2k. I have not been this angry in a very long time. I just had to get that out. I feel better and do not feel the need to bash this school anymore.

Enough about that! So, let me tell you how cool J is—J loves music. He has a guitar, piano and drum set. He plays them daily. I use the term “play” very loosely. We can always tell when he likes a new song b/c he searches out his guitar and plays his heart out. So beside his Calender time music (which if I have to hear for much longer you may need to call the loony bin), his music tastes consist of: Irma Thomas, Better than Ezra, Johnny Cash, “Oh Brother Where Art Thou” sound track, 3rd Eye Blind, Rufus Wainwright. We listen to more than these artists but he usually asks us to turn them off.