Saturday, July 11, 2009

What to expect when you have a micro preemie.

Doctor appointments with about 10 different "specialists" and therapists
Breathing treatments all day long, everyday.
Carrying around a 22 lb. kid because he cant walk.
tripping over oxygen tanks
No room in the house because of all the therapy and medical things.
Anxiety about everything from, fear of death to a dirty house...and everything inbetween.
Anger at the question Why?
Sleepless nights
Hospital stays.
Throw up from coughing/breathing problems AND from oral adversions.
Not looking but looking for "the next bad thing"...crossing eyes, left side weekness from eye to leg. etc...(I guess that this should go in with the anxiety one.)
Isolation from friends and family...well...from the whole real world as you used to know.
...these are the negatives that no one tells you about.

The positives are:
Having and raising a beautiful miracle that is your micro.
Special friends and resources that I never knew existed if I didnt have a child with special needs
A new respect for life and what is really important.
A new me...I dont know if it is better...but it is definitly new. You know...when they say that losing a child will change you did so much. Part of Tony and I died. Our dream of having twins died. Raising Nick AND Kenny was so badly hurts just thinking of it, but having a child with special needs changed me that much more.

Yes, the negatives out weighs the positives...but only in numbers. The positives are deeper than anything I have ever imagined. this week has been CRAZY! Started off with PT and OT for Kenny... so now, its 2 days a week for PT and 1 day a week for OT. I strongly feel that he needs more OT at this time, so when we go back next week, I'm gonna talk to them about it. He has a very weird looking, tight pincher grasp that I want them to work on among other things. I has a meeting with all of Kenny's peeps that work with him from his service coordinator, his teacher at his school during the school year, The county board health director, his child psychologist and his person that works with him from the Regional Infant hearing clinic. We were working on where we want Kenny to be for the next 6 months. Our goals are hopefully very reachable. I told them that I want Kenny to be the best he can be and to not look at him as a kid that has handicaps, but a kid that is going to learn on his own time (but with lots of help from us). Those goals include: Getting Kenny to stand without holding on to anything. I didn't want to say walking because I want to reach goals that I know he will achieve. If he does start walking within the next 6 months, that will be a bonus for us all! We want him to start to drink from a sippy cup. He is still drinking from a bottle. He doesn't know how to work a sippy cup. I have tried over and over again. We think it has to do with the whole chewing/swallowing/oral thing, he has going on from being intubated for so long. Another thing we want is for him to start keeping food down. Oh yeah..this will be a big accomplishment for us! He throws up EVERYTHING. Just yesterday I gave Gina those little Gerber Graduate meat sticks (cut up). She was eating them like a champ. Then you get little Kenny who WANTS to eat them...put one in his mouth...rolls it around in there for a while....comes over to mommy who was sitting and checking my e-mail...and BLAAAAAA....all over me. I had puke dripping down my legs, in my lap...yuck! I guess that will teach me to be on this dang computer when the kids are around. LOL!

We also want Kenny to start to communicate with us...either with sign language or speech. Right now, when Kenny wants something, he will either point to it or smile when we go through the list of "what do you want? do you want __ or __ or __?" He is very good at signing "all done", but that is about it. He used to sign "more", but he stopped doing it, even though I sign all the time to him.
Its just such a job. Yes, parenting itself is a job, but having a micro preemie is overtime!

I want to hear from other micro preemies that were born at 23 weeks gestation...anyone out there? I need to hear from you what you are going through. What to look forwards to. What to expect. I dont know what to expect...the outcome of him being born SO, so early. I NEED to know.

Right now, we are fighting off a double ear infection and upper respiratory issues again with Kenny...up all night (even more now that he is sick) with breathing treatments around the clock. Puking when he goes into these coughing fits, banging his head even more now that he is on his 4th ear infection in about 5 months. Not very fun at all. Then Gina has an ear infection and Kayleigh is coughing like crazy...what is up with this? Summer is supposed to be the "healthy" months!

This week coming up we have his ophthalmologist appt. I am very anxious to see what they say about how his eyes are starting to cross. It's just another issue that we are going to have to deal with.
Tomorrow we are celebrating Taylor's 10 birthday and Gina's 1st birthday... so tons of cleaning, shopping and setting up for that. I just love our family get-togethers. You know, the priest at Tony's uncle's funeral yesterday (RIP Uncle will be missed) said it best. Family is everything. Family and friends. This is why we have these parties...not for the gifts that the kids get, but for our kids to grow up with their Aunts, Uncles, Cousins and Grandparents. I want them to know that they have so much more than just us. To us, family is so very, very important. You are there for them when they need you. You can grow up and put your whole self into work...but in the end...what really matters? Tony's uncle Bob and his wife, Aunt Linda don't have a lot of money but they do have family and friends. And at his wake and funeral these last few days...showed a strong, loyal man who had family and friends who cried for him but also celebrated his life. A life that he shared with his family and friends. We should all learn from that. I pray to God every night that he give Tony and I strength to get through everything. That so what we have a small house that isn't in the greatest shape but at least we have one. That friends and family dont think I am ignoring them because I cant go out or talk on the phone...raising 7 kids that all want me and need me is very tough, especially one that is at therapies, doctor appts., and sick all the time. That everyone that has passed away is in Heaven waiting for the day that we can all be reunited (not for a loooong time though ;) ). That my kids grow up strong and loving and also protective of each other... oh...and that Extreme Makeover Home Edition picks us. Had to throw that in there. shhhhh.


Tiffany said...

I can relate to being a different person; not sure for the better or worse, but definitely different.

Hope your little one has a great party!

Quadmama said...

Raising preemies is no easy task, but it makes the milestones that much more rewarding. Good luck with your upcoming OT appointment.. hope they listen to your request for more OT. (ps-I've moved blog locations. Hope you'll check it out.)

E.J. said...

Thank you for this post, especially the portion related to the positives and negatives.

How to balance a sense of optimism with a sense of reality - that has to be one of the most troubling aspects of working with severely premature babies in the NICU. That balance is pretty ineffective when we explain it with our technical jargon, but in this post I get it loud and clear because it comes from your heart.

The Maggard Family said...

Hi! My name is Allison Maggard and my daughter Sophia was born @ 27 weeks as a micro preemie also. She weighed 2 lbs and was in the nicu for 127 days. Really bad lungs... the docs said the worst they had seen in a long time! She is still on oxygen full time. Sophia just turned 1 on May 5th. Anyways, I was reading your blog and just wanted to leave you a note and say hello. I am always looking for moms with preemies so we can all relate to eachother. My email is or I am going to get this blog thing going... I have been bad about that. I would love to hear from you!

Young Christian Woman said...

I don't have a preemie, and I don't know what you've tried and what might work, but do you think Kenny could use a straw cup? It's easier to operate than a sippy cup, which has to be tipped up; all you have to do is suck.

Good luck and sorry if that's not helpful.

Michele said...

We tried the straw...he just cant/doesnt know how to work it...its the whole sucking thing. The feeding clinic should/will help...just gonna take time I guess.

Anonymous said...

Hello to you and your gorgeous family-you "noted" on a post I had on baby center about teeth. I have a 23 weeker and would love to chat with you about all these milestones and even though our journey and ages are different it would still be nice...not big about putting my email out there so if you want check the babycenter message and I will send you my email that of luck with the sippy we are trying too and he is just not interested in any of them!