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.

Inching closer to the contract

I got an email last night from our home study social worker, and she was emailing the updated home study to CC last night. She said since it was just an update that she was talking to them over the phone instead of doing it face to face. She said that should be done by the end of this week. After that we should be able to sign the contract with CC.

I am sort of starting to nest. With the reality that a baby could happen at anytime, I need to have things clean and ready. This past weekend I went into the attic and brought down the baby swing, car seat and bathtub. Plan on spending the next few days giving them a good cleaning. I want to be able to put them in the nursery and forget about them. I am still picking up things from the store one at a time. I forgot how much stuff babies need. I don’t have that much and it has taken over the nursery. I hope to have the crib voucher this week and crib situation taken care of this weekend.

J and hubby have been going to the pool pretty regularly. J is big on associations. He associates pool time with his cousin. We usually go swimming at their house. Yesterday, J and hubby were at the pool and J was calling all of the little boys there his cousin’s name. He was also trying to talk to them (which is good that he is wanting to interact with peers) in “little einstein speak.” They really did not know how to take J, but hubby said they were nice to J. J has to be taught EVERYTHING. Most kids pick up social cues naturally. Not my J. This has me back thinking he is on the ASD spectrum. That is pretty typical of kiddos on the spectrum. It will be interesting to see how he does in the typical pre-K class in the fall. He is getting to an age that kids are not going to be as accepting of “different,” and we are really going to have to work with him to get him where he needs to be. When J was medically fragile, we knew what tangible things we had to do to keep him alive. I find this stage harder. What do you do to get your child where they need to be socially?

“The Greatest Show On Earth”

Guess where we spent our afternoon? The circus. Ringling Bros is in town, and we took J along with some friends to the show. He was good overall. When he was ready to go, he looked at hubby and said “time to go.” This was good b/c it avoided a meltdown in the show. He had a very small one just outside the gates. He is so tired this afternoon; I wasn’t surprised.

on the way in

before the show

horrible picture of me but proof I was there

too tired to walk to the car

I have some really cool pics but they made a big deal about not doing anything with the pics you took today so I won’t post them. Probably just being paranoid but last thing I want to do is a copyright infringement.

I took these pics with my new amazing camera. I had the absolute worst camera before. It had such a lag time J was never in focus or even in the picture when the picture would actually take. I like my new one sooooo much better. It is still a challenge to get J to stay still for a picture but it was vastly better.

Happy Father’s Day

Hubby gets kuddos b/c he spent all afternoon cutting the grass and cleaning the house. We have are hosting our Church small group tomorrow night and the house needed to be clean. W/ a 4 yr old, it does no good cleaning too far in advance.

Just reading some of the blogs of families with special needs children a lot of great stories of devoted fathers to hard to raise kids. I see this a lot in my line of work. Single moms raising special needs children b/c the “dad” could not deal with what ever disability. I am very lucky to have a great husband and J is lucky to have a very hands on and loving father. I need to say thank you and appreciate him more. To end I have a funny story. One night we were watching Extreme home makeover. It was about a single father who was hurt in the war and wife left him when he returned. We were talking about how could someone do that and hubby likened it to when fathers leave disabled kids. Well we had been having a couple of bad days with J and that night we went to bed. In the middle of the night, hubby woke up (I use that term very loosely) and said “it is too hard and I can’t take it anymore. I guess I have to leave.” I knew he was still asleep and laughed at him. The next morning he had no memory of that conversation. I like to tease him still about that.

Blueberry picking 08

J, myself, a friend and her little one went berry picking this morning bright and early. We had a great time and I walked away with over 3 lbs of blueberries. Here are a few pics from our day.

**still trying to learn wordpress, I know the pics are messed up.

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.