Wednesday, February 14, 2007

At age 2...

Since so much emphasis is put on clinic follow up studies that only track preemies through age 2, I thought it would be interesting to post about my daughter at age 2. The following was written on her clinic discharge sheet.

"Premature girl born at 25.5 weeks gestation, 805 grams, 13" long. Current age is 24.1 months. There is no sign of any gross motor delay and only a slight fine motor delay. Although speech is limited, child uses sign language to communicate and therefore was able to demonstrate adequate language skills. Parents report that child is hardly sick with any colds. Parents also report child has chronic constipation. Information was given and parents were instructed to increase water and fruit."

No further therapy recommended. No further follow up is needed."

Ah, what a nice age that was. It's true, she was hardly sick. Many doctors commented on how healthy she appeared to be. She could not put 2 words together either by speaking or signing. I still wonder how they felt she had adequate language skills. The constipation comment still kills me to this day. I found it quite interesting that the constipation issue started in the NICU (where she was fed breatmilk and formula) but the clinic felt that it was our fault and instructed us to give more water and fruit!

Age 3...
diagnosed with severe sensory integration dysfunction,
still could not put 2 words together
diagnosed with severe anxiety disorder
diagnosed with PDD-Nos
self harming behavior
could barely bend legs because of CP
had bilateral hernia repair
started on MiraLAX for constipation

Age 4...
1 week before turning 4 she had her first seizure
could now speak on an 8 year old level
lost ability to walk long distances because of fatigue
sensory issues worsened
began meds for anxiety disorder but it only caused rages-she tried to pull out her eyeball
had many procedures to asses reflux
diagnosed with failure to thrive due to weight
diagnosed with GERD
chronic sinus infections

Age 5...
could not function in kindergarten due to fine motor delay
sensory issues worsened

Age 6...
finally got a diagnosis of CP
had tonsils and adenoids removed to open airway
outsiders began noticing her social differences

Age 7...
had so many GI procedures that I lost count
multiple MRI's to determine other possible causes of leg pain
tried to kill herself
self harming behavior
yellow adult teeth

Age 8...
diagnosed with OCD
started on meds again for anxiety disorder
socially is an outcast
will be getting palatal expander

I'm sure I have forgotten some.

Age 2 was looking pretty good!

I would love to hear from other preemie parents as to what issues were present at age 2 and which ones did not show up until later.


Helen Harrison said...

Ah yes,

Age two:

Ed was walking and talking, sometimes even in sentences, -- i.e. "There's a Honda!" "Here's a trapezoid." He was a whiz with a shape sorter and a master of the Bayley Scales.

He could read (with his one good eye) about 100 flash cards and several Dr. Seuss books (Hop on Pop, etc).

At age three the psychologist at his NICU follow-up clinic declared him "socially and intellectually advanced."

No one ever mentioned (to us) the term "cerebral palsy."

Now, Ed is 31 years old. He needs 24-hour-a-day, one-on-one adult supervision. He will obviously never live independently.

His "mild" CP has required one heel cord surgery... I know, I know...that's not much at all for a child with CP, but still ...for a child with an IQ of 59 it was hard to explain the surgery, the cast,and the saw to remove the cast... which left him utterly terrorized.

He has had 15 prematurity-related surgeries in his life, and we are dreading the next one since his ventricles are, once again, expanding.

All in all, we've had it easy compared to so many other preemie parents and their children.

Chris and Vic said...

At age 2, Vic was still cortically blind. He maybe saw 3 or so feet out. He had had his 8th shunt revision a few weeks prior to his 1st birthday. He had many, many shunt malfuctions in those days. In fact, there was a 10-week period of time when he had malfunctions 2 or 3 times a day for several weeks, then once a day for several weeks, then 3 or 4 times a week for several weeks, etc. In retrospect, his neurosurgeon believed it was rotavirus---I always believe that when Vic produced extra cerebro-spinal fluid during a viral infection (as we all do), his shunt system didn't handlt it well, and "backed up," thus producing shunt malfuction/failure symptomatology. I went to school to get him over and over, every day. We waited 2 hours or so for him to come-to---which he always did. My standard was if I couldn't wake him after 2 hours (he would pass out oafter throwing up, the last phase in a long cascade of symptoms), and if his heart rhythm was irregular and getting slower, I would take him in to the ER.
During this Birth-to-Three period, he tested in the lowest 1%. Bayley, Denver Developmental, etc. But he was growing a large vocabulary, with perfect diction. The psychologist tester guessed he might be hyperlexic.
At age 2 1/2 he finally walked. He saw further and futher distances. Little by little. He didn't track moving objects, though. He still is weak with respect to tracking. And he has limited depth perception.
He had had his feeding tube, an NG, till about 15 months. He then learned to suck from a bottle. He ate some applesauce and yogurt--and only that--almost till his 4th birthday. Then he discovered french fries. He loved them, even with coughing, sputtering, near-choking. At age 4, the school wanted to take away his bottle and taught him to drink from a sippy cup. He lived on Pediasure through till his 5th birthday.
Meanwhile, his vocabulary was
growing with multisyllabic words, and he was beginning to memorize stories. He continued to have fairly frequent shunt malfunctions
---several a month. None progressed to all-out failure.
He had sensory defensiveness about textures (sand, falling leaves in the fall, pavement under his bare feet, as well as oral defensiveness). He was and still is terrified by loud noises---the fire engines going by or the train on the railroad tracks.
At age 6 he had a neuropsych eval. His I.Q. was 48. It took me more than a year of grieving to get over it. This year, his 11th, his I.Q. has fallen to 40.
However he reads (like a 1st-2nd grader),and he can add double digit numbers, and carry from the ones to the tens column. He has memorized many, many books, and he has the vocabulary of a college freshman. And he can tell time.
Though he doesn't know right from left and has serious visual-spatial difficulties, he is testing tonight for his high purple belt in Tae Kwon Do. I don't know how he does the forms without knowing right from left. (High purple is his 3rd promotion.)
And yes, he can break the boards, even though he is not yet 70 lb.
(He is 50 in. tall.)
He is not toilet trained, but we have a rather rigid toileting schedule, and Vic seldom has an accident.
Vic perseverates. Vic has autistic features without the diagnosis of autism, such as flipping a matchbox car by holding its back wheels and rapidly flipping it back and forth onto his palm and 1st finger. Vic sometimes gets cause-and-effect, sometimes not. He is inconsistent.
Vic loves music--he sings with Vaartina, a Finnish group of women, and he has some of the Finnish lyrics down. He loves Irish fiddling and bagpipes. He loves Bobby McFerrin. He loves Garrison Keillor and Prairie Home Companion, and has several skits memorized--the Gospel birds, the Lutheran ministers on the pontoon boat, Dusty and Lefty skits, and Guy Noir, Private Eye.
Even with a rather low I.Q., Vic is "bright," that is always "up" and ready-to-go. He is outgoing--even though he doesn't always make eye contact. He is excited about many things, and eager about many things--even with some difficulty with transitions to new places and experiences. He has some social anxiety.
He loves to read and to be read to. He loves miniature golf, and makes 3 or 4 holes-in-one per 18 holes, even with his visual difficulties. He makes a lot of free throws on the basketball court too. Even without depth perception (he has had strabismus surgery at age 3--both eyes), he gets those baskets and holes-in-one. We don't understand it.
He has asthma, which is getting more severe. He gets 2 Pulmicort breathing treatments/day.
He has nighttime seizures--but is not on seizure meds at the present time.
Unlike Ed and your daughter, Vic is a mixed bag--inconsistent. Yes, his I.Q. is lower, but some skills are progressing nicely. Vic is about to go to middle school--Bill and I visited the sp. ed. classroom today, and observed and talked things over with the teacher.
I can only talk about the past. I cannot bring myself to speculate about the future. It scares me to death.
Chris and Vic

Ryn Tales said...

That is the kicker isn't it - age 2. They say cp is a "static condition" just like prematurity. They told us - well at least it's not a degenerative condition - it won't get worse - what you see is what you get - in looking at your -1 month year old.

But it does and can get worse and then better and then even worse as you story demonstrates. It breaks my heart.

I am new to your blog but love it. I can appreciate some of what you have been through and shudder in reading this what is in our future. Thank godness you can only live one day at a time.

I am going to link you to my blog. I really appreciate your candidness.


Anonymous said...
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Anonymous said...

My daughters discharge at age 3 said the same thing.Fast forward 10 yrs Social security is asking for money for overpayment that was discontinued at age 3 because my daughter no longer qualified.

meg said...

I can't really relate to the severity of problems you've experienced, as my twins were born at 27 weeks and their problems (after the first year or so) are on the fairly insignificant side.

I do think about this of my daughters had ITP when she was 3...idiopathic's a fairly benign and temporary, albeit frightening, autoimmune disorder of the blood.

This same child has been struggling for the last two years with trichotillomania, which is compulsive pulling out of hair, eyelashes etc., and I just recently discovered her twin is doing it too, in a milder version. The former twin seems to have some attention deficit as well.

The latter twin was diagnosed at the age of 7 with amblyopia, basically blind in one eye, even though eye exams up til age 2 did not show a problem. This condition is caused by one eye having poorer vision than the other, so that the brain gets confused by the differing images it's getting and gradually stops focusing the weaker eye. Apparently it's much more treatable the earlier it's caught, so I'm left feeling kind of guilty that I didn't push for more eye exams. Unfortunately on her regular vision screenings she was "peeking" with her good eye, and that delayed diagnosis. A comprehensive eye exam would have detected the problem sooner.

I've brought this all up with the peds vis a vis the prematurity, and I pretty much get a shrug of the shoulders and a "maybe it's related, maybe not" type of answer. The feeling seems to be, does it matter whether it's related or not? But I do think a little more follow up in vision, behavioral development, etc. would have been helpful.

Btw, yeah, they have funky teeth too but so did their dad when he was a kid,so I'm not sure if that's not just genetics....

Stacey said...

I don't even know what to say.
Much of it has to do with how grateful I am to even have a daughter knowing how many families lost babies the 2 months we spent in NICU. I know we are lucky and I am grateful everyday. That being said....Laurel is 4 1/2 and she has never had a "regular" bowl movement. She was diagnosed with "mild" CP at about 26 months because she wasn't even cruising at the time.(although all the other marked delays ie...not rolling over not sitting up and so on were never red flagged as out of the ordinary)
She eventually walked and ran and jumped and did all the things we feared she may never do. The year between 2 and 3 is did not grow an inch not in height weight. Even her feet stayed tiny but again I was told your daughter is perfectly healthy.
I have not mentioned the fatigue. She will be five soon and I can't go even to the mall for an hour without a stroller. Laurel is constantly tired and will often take to her bed. She doesn;t want to go to the park or the zoo she's too tired. She is constantly trying to catch her breath (which smells awful no matter what we do). She vomits everyday sometimes more than once. WE can't go for a ride in the car even for 15 minutes without having to vomit or stop and use a bathroom (even though she can't poop)Her stomach hurts constantly. She has had a dry cough for the last 2 years and she snores like a grown man when she sleeps and often stops breathing for up to 17 seconds. I could go on and on but I think I have made my point. Just because my preemie is pretty and "looks normal" does not mean there are no on going preemie issues> I will continue to push and advocate for my daughter until the medical community and the community at large recognize That these children are falling through the cracks!!!
WE really need a group of like minded folks to band together. I am so glad to have found you the last 4 years have been very lonely.

Natural Journey Woman said...

My first preemie was born at 24 wks and 1 day. She has had several surgeries and many specialist in her life. Now at 6 she is displaying some behavior and symptoms that concern us. People say that I worry to much just because she "WAS" a preemie. but I know that there is so much more to it than that. Call it mothers intuition or whatever but my daughter is going through some things. I was never told about half of the things that she has gone through and when researching and investigating symptoms on my own, I found diagnosis and brought them to the doctors over and over again until they finally said "I believe she has such and such and such.." as though I had not spent a year telling them that. Sometimes they would tell me I should become a doctor or nurse a sthough it were a compliment, it just made me more certain that most doctors have no clue about what to do for a preemie that exemplifies issues after 2. My daughter now has migraines and after a full year of telling her doctors as such they diagnosed her yesterday. She also has begun wetting herself after being fully potty trined since 2 1/2. along with her adhd? and ocd because she has a strong desire to watch her hands, she has to deal with migraines that can last up to 6 days. I have been told that migraines are not so bad compared to what she oculd be going through. That is true in a way but my thoughts are you come hold my baby through the night and watch her moans and cries hour after hour for days when medicine has no relief and she tells us her brain is about to explode. She has some other underlying conditions that we cannot understand and pin point. What I know for certain is that some preemies gte worse with time while others get better and some stay in between. I have two so I know the difference. my first was 1 lb. 5 oz. & 12 in. @24 wks &1 day is going through the residual effects more harshly and the more healthier daughter was born at 34 wks & 1day 3 lb. 11 oz. 16 1/4 in. and has less complications.
No matter what I awake praying that my kids feel better than yesterday, everyday of my life. I wish my biggest worry when it comes to them was a cold, eat all your vegetables, brush your teeth, let me kiss your booboo but it is not so my biggest wish is that doctors knew what to do when it comes to preemies. Maybe then I can tell my daughters that the doctor will make you better and know that they will. My 6 year told me yesterday that "she don't want to go back cause it still hurts like the last time."

Natural Journey Woman said...

that was meant to say a strong desire to wash her hands.

Sara aka twig said...

My preemie was born with severe hydrocephalus at 32 weeks. She broke 5 lbs. solely because her head alone weighed more than two pounds.

She had her first seizure just before age two, and deals with asthma and low immunity. So far, she's missed over 40 days of kindergarten this year due to colds and asthma flares.

She has low tone, though not too bad. Her gross motor skills are below average, but her docs just say it's because she's a quiet child. Thanks. Good luck getting a PT now...

Her fine motor is her most significant delay, though she has some cortical visual issues as well, that I think contribute to her fine motor delays. Her vocabulary is excellent, but it is obvious that she is cognitively and socially behind her peers. I see some OCD-like behaviors, but so far it is very preschoolerish, ie she likes lots of repetition like a preschooler.

She still can't stand a great deal of stimulation. The kindergarten pre-break hot cocoa and cookie party with all the school's kindergartners and their parents in the cafeteria was too much for her. She broke down into overwhelmed tears and we had to leave early.

My hubby is almost 31- he was born six weeks early and still has a similar issue with loud noises/lots of stimulation, though he is above average in every other aspect.

Good luck with your daughter, and keep up the good work!

ThePreemie Experiment said...

Thank you so much for sharing!

I completely understand the over stimulation. When Paige was still in public school (we now homeschool) they used to have dances (this was elementary school!) during the school day. She never could handle the loud music in the gym and was a wreck for days after each dance. Fire alarms.... forget it!

Again, thanks for reading and sharing!

Siddheshwari said...

I was born only one month early, but, as Stacy and Sara described, I have a problem with over-stimulation too. I also get easily overwhelmed. Try walking into a store with lots of music, lots of people, and lots of choices -- I just stare at all the choices and they become one big blur.

I have also had difficulties with feeling alone -- that somehow I have to take care of myself. I brace myself -- and have images of doing so in the incubator.

When I come across a challenging situation, I tend to give up easily. Get overwhelmed and go into the "why bother!" syndrome (that's not a medically recognized syndrome -- just my own words for the feelings that come up).

These things have changed a lot through the use of Reiki (yes, it is a CAM, but it definitely changed things for me recently). But it is clear to me that what I had experienced so many years came from being born early.

So these are just some of the emotional and social issues that continue through life (I'm 60 years old) -- to say nothing of the physical issues that smaller preemies have that continue after 2 years!

I am shocked that doctors look at 2 years as the determining point. How ridiculous!

Anonymous said...

Stacy, thank you for your post. Few medical professionals seem to realize that significant disabilities often appear after age 2. I was born at 25 weeks and had few complications at age 2. The neurological complications of prematurity seemed to increase as I grew older. Here is a short time line:

Age 2- Spoke in full sentences, walked. Dx'd with mild cerebral palsy.

Age 4- Dx'd with PDD-NOS. Self stimmed, non eye contact, extreme sensory avoidance. But also said to be "very imaginative", and “ highly engaged in pretend play.”

Age 6- IQ test shows extreme split in verbal/nonverbal scores. Self stimmed, no eye contact

Age 13-Dx'd with depression and possible Aspergers.

Age 22- Graduated from college with a B.A. in English. Extreme difficulty completing coursework.

Age 24 Dx'd with treatment resistant clinical depression and "possible non verbal learning disorder".

Age 26- Flunked out of graduate school. A near lethal suicide attempt.

At age 2 I was a thriving; at age 27 I'm disintegrating. Current studies are beginning to show a tentative link between prematurity and mental illness. I hope further studies verify this link. However, academic research will never accurately depict the long term misery of mental illness. I speak, I walk, I drive, but I can't seem to function in the "real world". I feel so ashamed because I still can’t live independently. I apologize for this grim post. However, it's time someone discussed the long term psychological outcomes related to prematurity.