Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Sunday, December 13, 2009

Resting?

I know it seems as if I been on a blog-a-palooza here lately, what with the visits to Santa, Crappy Lung Syndrome and all. I cannot help but add yet another post this week.

I am sure three-quarters of American households have tuned into TLC, "The Learning Channel" at some point in the past few years. TLC currently has a reality show that I believe started out with the title "16 and Counting" and progressed to "18 and Counting," as Michelle Duggar, the matriarch of the clan, had ever more children. The title can now officially be called "19 and Counting" since Mrs. Duggar has now given birth to her 19th child.

This child however was born at 25 or 26 weeks (depending upon who does the math) and weighed 1 pound 6 ounces. Your basic "Eliza-size." I am sure it was not the birth that TLC was hoping for.

The Duggar family spokesperson reported that:

Josie Brooklyn Duggar checked in at 6:27 p.m. She weighed 1 pound, 6 ounces and was reported to be resting in the hospital’s neonatal intensive care unit. A family spokesman told People magazine that the infant was expected to be fine.

The TLC spokesperson said:

“The most important thing right now is for mom and baby Josie to get as much rest as possible,” a TLC spokesman said in a statement issued to People.

You can read all about it here.

For those of you not familiar with a Level III NICU (and I do so wish you never have to become acquainted with one) there is nothing "restful" about it.

The baby is not "resting" in the NICU as one would rest after say a long hard day of work or some minor out patient surgery.

The baby likely:

1. is on some form of mechanical ventilation
2. is under Billi lights
3. is attached to a pulse oximeter
4. is on TPN for nutrition
5. has multiple umbilical lines (a/k/a IVs in her belly button)
6. is receiving almost no human touch because her skin is so fragile
7. has a PICC line
8. is on a multitude of medications that you will likely never need
9. has a half dozen or more heel sticks a day for blood gas studies
11. is in an isolette which is as loud as a wind tunnel
12. needs external heat and humidity since she cannot maintain her body temperature
13. has 14 to 20 invasive and painful procedures a day


... dare I go on. Does any of this sound "RESTFUL?"

This baby is at risk for:

1. IVH
2. ROP
3. RDS
4. BPD
5. CLD
6. AOP
7. GERD
8. NEC
9. PDA
10. PHT
11. PIE
12. sepsis

If the family spokesperson and the TLC representative cannot translate this alphabet soup of extreme prematurity then they should not report that the baby is "resting" and will be "fine." It is beyond disingenuous to report that this baby will be "fine" when the baby has not even survived its first few days in the NICU.

It is irresponsible.
It is dismissive of the struggle to live that Eliza and every other micropreemie goes through each and every day.

I have no particular gripe with the Duggars. They have chosen to live their lives in the public eye with cameras in their home (in exchange for a hefty paycheck) not unlike many other reality TV families. Do I think this is they way children should grow up? No. But it is their choice.

However, having made their choice to live in the public eye and hold their family out as an example to society, then they have the moral responsibility to accurately report what the life of a 25 or 26 weeker is like and not to gloss over the bleak moments and the moments of pain and despair that every parent of every micro preemie experiences. They have a responsibility to not diminish the struggle to survive each and every minute that every micropreemie struggles with each and every day.

So Duggars, you have my empathy and I do wish for your sakes you had not joined this club.

Because you have joined this elite club of micropreemie parents and live your lives in the public eye, you have a responsibility to accurately report the life of your child.

Oh and to the TLC spokesperson ... do your homework before reporting about that which you do not know.

24 comments:

Jason said...

Amen. My curiosity got the best of me when I heard about the celebrity micro, so I pulled up one of the stories and started browsing the comments. Most were about the parents, but there were a few morons who made comments to the effect of "medicine is so advanced today, a baby born at 1 lb. will definitely survive and won't have any disabilities." My blood is still boiling.

BTW, I love reading your blog, and Eliza looks fantastic. She's an inspiration to those of us just starting down this road.

Jason
Bryce and ^Chloe^'s Dad, 24+0 weeks

Kate said...

Call me cynical, but I have to wonder if this is -exactly- the sort of birth TLC wanted.

Drama! Angst! Pathos! Ratings!

We'll see how they play it. It may depend on her course. Scary but not too scary is probably what the producers are hoping for...

Anthony's Mommy said...

I agree 100% with what you said. I thought the same thing when i heard "restful" I felt so angry too! I hope this child makes it but I also hope that TLC does report whats going on accurately. There will be lots of bumps in the road and that is even if the child does well.

Kim (mom of a 26 weeker)

SpeasHill said...

Well said. Thanks for sharing your thoughts.

Anne, Eliza Grace's mom said...

Kate,

I suspect you could be right. But I suppose if the drama is even remotely accurate, I'll be grateful for he attention it brings to our little band of babies.

SpeasHill said...

Anne, do you mind if I link to this post?

Anne, Eliza Grace's mom said...

Link away!

Anne, Eliza Grace's mom said...

Jason,

I am glad you enjoy the blog. It's a long road, and a lot of it has been and will be uphill, but it has been a wonderful journey ... especially right now because although it is midnight, Eliza has woken up to say "sit with Mommy and read a book" and these are incredible words to hear!

Kate said...

Anne,

I do agree with you there. I really don't like this whole mega-family reality industry. But on the other hand there's a chance now to show the realities of micropreemiehood from the very beginning and to a large audience who probably has little knowledge of these sorts of situations. And I just can't be angry about that no matter what my feelings about the nature of these programs.

Amanda Bacon said...

Amen Sister! I too would like to link to this post! You hit it all right on the head, thank you thank you thank you!!

Brinson's Mommy said...

Anne,
I really wish you'd forward a letter like this to the TLC network. I agree with everyone else, that is just insane. It is really hard for a micropreemie parent to read that "oh, it's no big deal...it's just NICU". Tremendous injustice.
You have such a wonderful way with words!

Anne, Eliza Grace's mom said...

Amanda ... of course you may link to this!

Anonymous said...

The baby was just born. You should give the parents a moment to digest what has happened. I know I was in a state of complete shock. Nothing could have prepared the Duggars for the reality of a micro-preemie birth. Have you stopped to consider that maybe at this moment, they NEED to believe that their much loved baby girl is resting comfortably?

Anne, Eliza Grace's mom said...

Anonymous,

I have no issue with the Duggars, but rather with their spokesperson and that of TLC.

Whatever the Duggars need to believe is fine with me. That does not however preclude their spokesperson or TLC from issuing a more responsible statement.

The TLC spokesperson could simply have said "babies born at this gestation often face many hurdles and we at TLC wish the family the best."

The family spokesperson could have simply said "the baby is being cared for in the NICU. The family hopes for the best outcome and appreciates everyone's concern during this difficult time."

Anonymous said...

The statement from TLC and from the Duggars spokesperson, would have been reviewed and approved by the Duggars themselves (even a preemie has a right to medical privacy!). Give them time to digest what has happened and mourn the loss of a full-term healthy pregnancy.

Anne, Eliza Grace's mom said...

Anonymous:

Of course everyone has a right to medical privacy regardless of their age. If you read some of my prior posts I am particularly critical of visitors to the NICU who think it is their right to "view" each and every baby in there without regard to that patient's privacy.

I hope the media (and TLC in particular) also respects the privacy of the other families with children in that same NICU since it extremely unpleasant to be faced with TV cameras and the stares of the crew when you are simply trying to enter the hospital to visit your critically ill baby.

As to whether or not the Duggars approved the statement, neither you nor I know that. People hire spokespersons and agents to issue statements on their behalf so they don't have to do so. It does not mean that every statement is approved by the principal.

I suppose though that time will only tell whether or not TLC reports accurately on this, either as part of the Duggars' show or otherwise. I will admit I am not too hopeful that the life of a micropreemie will be accurately reported.

Tasha said...

AMEN!!!!! I put the same type of post on our blog on the day she was born. I agree with your statement that it is irresponsible reporting to say the baby is "resting" and "expected to be fine."

Mommato2miracles said...

Well said!!! It is unfortunate that this family has now entered the ranks of the "micro-preemie world". But I pray that since they have that a whole new light will be shined on micro-preemies and all of the complications/struggles for a lifetime that come along with it.
I wish and pray for the best for little Josie and her family. But I also pray that as public figures they become spokespeople for the devastating rates of prematurity in the U.S and the lifelong complications that arise from microprematurity (is that even a word?)
Well said!!! Thanks for being responsible and sharing your struggle and the true face of micro preemies. Praying that Eliza thrives:-)

Laraf123 said...

In addition to being an SMC to a child who was in the NICU, I'm also a teacher with a master's in early childhood special education. I agree with everything you said in your post. Life is very, very different for children born this early. They are not just tiny with "a little catching up to do". It is not be be taken lightly. Thanks for posting.

Anonymous said...

My son was born at 26 weeks, 6 days. I can say with absolute no hesitation that neither Nicholas nor I "rested" during our stay in the NICU. I say "our stay" b/c that is where you live when your child is in the NICU. It is not like a bad cold where you just need rest to make it better. Every day you hope and pray that they continue to do well, and do not succomb to the many different things that can happen to micro-preemies. Whenever I would tell the neonatologist how great Nicholas was doing, she was say fantastic, but he is not out of the woods. It was a sobering reminder than anything can happen to these babies. Modern medicine can only do so much. Thank you for posting this.

Brandi

Kiley and Matthew said...

Ugh, I just wrote a post about this on my blog as well. I have to say I was immediately annoyed when I read "resting and fine" relating a micropreemie. My son was born at 25 weeks on March 30th 2009 and I still havent reached resting or fine! However, I did just read that daddy Duggar reported baby Josie as "stable" which much more appropriate. And I too was annoyed with TLC and the family spokesman not the family.

Crystal said...

Amen, They are in my prayers. I was reading your post and teared up because I am a member of the micrpreemie club times two I had twins born at 25 1/4 weeks. My eldest twin did not survive the NICU. Their truly needs to be more public knowledge about prematurity because honestly I was thrown through the loop with all the issue we faced and are still potentially facing.

I still can't believe the words REST and NICU were even in the same sentence let alone same document. To this day if I even hear any type of hospital monitor I have some sort of flashback to 2007 and have a mini anxiety attack. No one rests in the NICU not the parents not the babies not the nurse not the doctors no one.

Crystal
Broderick (my angel) and Brandon's(my angel on earth) mom 25 1/4 weeks

coolcapmom said...

Thank you for your post. I am a pediatrician and the parent of a NICU survivor (not a preemie, but a critically ill kiddo) and I wanted to scream when I saw this. It is a disservice to the strength, suffering and resilience of these babies. I do think in general, there is a tendency in the media to sugarcoat childhood illness and disability. Sometimes reality is just too hard to report. Thanks for your post.

ruth said...

i argee with you but my so was born 10 over the due date but he has special needs and he now 13 years old he goes to normal school the duggars don't want to hear that joise got special needs and special needs is not a shame my son does kick boxing he is on high belt everone teat him nomal