Preemie Development

Dr. Steel is the BEST!!!

I'm a nurse and have done some work with preemies. Early Intervention will be very helpful to you and your son, and I would urge you to take advantage of it. His stiffness may be a transient condition that can be remedied with therapies--both physical therapy and occupational therapy can be helpful--the p.t. for large muscle development and the o.t. for fine motor skills.

Good Morning!
My daughter is now 15 yrs old. She was 26 weeks, 2 lb 1 oz. As the other moms report, my baby had initial eye muscle issues and saw local(NJ) eye doc and we did vision exercises and with that the problem self corrected. My son(non preemie) was the one who needed some corrective eye surgery and we found yet a second eye in NJ who is a great surgeon. The referrals both came from the post preemie follow up program at MMH in Morris county!

My daughter(the preemie) did have some hip weakness, referred to rehab for abouts 7-9 months--so long ago and ran track at the age of 9 winning the 100 meter on occasion! With this rehab as well, the suggested exercises just worked into play time and really she eventually caught up!

Have fun with your wonderful little boy!

M. - I will first say how truly blessed you are. I too am a mother of preemies - my son, now four was born at 23 weeks and weighed 1 lb. 11 oz's and my daughter was born at 24 weeks and weighed 1 lb. 8 oz. We sadly also are the parents of a beautiful angel whom we named Angel who died shortly after he was born (our daughters twin). This is the time when you will begin to notice some of the problems/challenges that you heard about preemies possibly encountering when your son was in the hospital. Although we pray to not experience any of them - you have to prepare yourself for some. Muscle tone is something my son struggles with. His issue however is poor muscle tone (weak).He runs with a noticable wobble, has a tough time holding an open cup steadily to avoid minor spills and has a hard time jumping to clear even two inches off the ground. He is in therapy once a month for helping to build his strength and they provide exercises that we can work with at home easily - no fancy equipment needed. What I can tell you though is that these are obstacles that therapy can help overcome. You are doing the right thing by getting him evaluated now as early intervention is critical with these miracle babies. On a truly positive note, and something to keep you positive, that despite my childrens prematurity and the odds that were given to each of them - they are both thriving children with amazing intelligence and love of life. Challenges will present themselves but always remember where he came from-and that he is a true fighter and that you love him for the special person he is. Take one day at a time and don't ever be afraid to ask for evaluations!! Great job mommy!

If in NYC, I would go to Sandy Jamrog's developmental movement class for babies. Do a private with her if you have the $$. CranioSacral therapy may also help. Sandy's # is ###-###-####, and the next class is 3/31 at 2pm. Good luck.

E.

I have a 2 year old who was born at 32 weeks 2lbs 9oz. I noticed a few months ago that her eyes were drofting out. This is more common in Preemies. We went to a pediatric opthomologist, patched her eyes for a few months, and a couple of weeks ago she had surgery. Her eye is much better now. I would see an opthomologist if I were you. I went to Dr. Marc Steele at 42 W. 72nd Street. Best of luck.
Mother of 3 - 14 year old boy, 12.5 year old girl and 2 year old girl

hi M.,
I'm a mother of a premee as well. she was born when I was 7 months pregnant. she has never has any big problem connected to her prematurity. she started to walk at 19 months..so a bit later compared to the majority..anyway I used to go to physioterapist specialized in premature babies. that helped a lot because at least to know how I could help in her motoric development.

Hi M., My 2 1/2 year old son Matthew who was an identical twin (his brother james is in heaven) was born at 24 weeks weighing 1 lb. 15 oz. His stay in the Nicu lasted 3 months and he remained on oxygen till he was 4 1/2 months old. Matthew has had laser eye surgery for ROP and recentley had tubes placed in his ears. Matthew is still receiving physical therapy and speech thereapy and is actualy being evaluated today by a pshycologist to see if he can get a teacher or OT services. Matthew started walking when he was around 15 months and now talks almost clearly. Definitely get any and all services you can, they really help so when your son goes to school he is not behind. I worried alot about how far behind my son would be at first. But you know what they are little miracles and just enjoy one day at atime with them. When they are ready to walk, and talk they will do and then never stop! Keep positive and e-mail me with any questions you may have. I feel as though I have been through it all and am sronger then ever!

I'm a Mom of 28 weeker born at 2 lbs 15 oz. We also went through similar concerns and have been using early intervention for a couple of months now - beware it takes a long time for the services to actually start. Ironically, my sons neurologist does not even believe he needs it anymore. When my son was 10 - 11 months old (7-8 months adjusted) he was not even able to sit up on his own and was not doing to much - now he is 16 months and is doing everything he should be doing (with very little help from early intervention) and is pretty much caught up to a normal 16 month old. He just took his first step this past weekend and has been crawling around everywhere and getting into everything for months now. Definitely get the early intervention it is very helpful and they will work with the muscle stiffness that is a concern but honestly also give it some time because as they get older the development may just happen naturally. Just as we were getting nervous our son just took off on his own.

In regards to his eyes - definitely see a specialist. Our son also had some problems (ROP) but fortunately outgrew these - there are great doctors out there to handle eye problems early on before they get worse.

my son was 2 pounds 12 oz at 38 weeks gestation. In the neonatal unit for 2 and a half months. His twin sister "normal" at 5 pounds 12 oz (the were undiagnosed twins) I still am in shock after 25 years.

Pay attention to nutrition. Read to him a lot even now. Massage therapy. I massaged my son fom infancy till he was about 6. He faced similar issues. Watch for learning disabilities. My son has mild cerebral palsy. We did early intervention as well. He had a lot of spacicity and ADD. Had PT OT and speech therapy through out is days in school. His placenta was detached and calcified. Watch immunizations. He hat DT instead of DPT as the P part gave him seizures. My son had an eye patch for a while when he was about 8 which seemed to dorrect the muscle weakness. You are your childs best advocate.

Hello M.,

The one thing I would recommend is to make sure he is getting his vaccines later, at the adjusted age as if he went full term. Also, when it is time to get them, use the single dose vaccine's which do not contain preservatives.

[I've been doing a bit of research on vaccines as my little guy is due for his next round on Friday]

Blessings to you and yours,
K.

M.,
I fostered a little preemie girl a couple of years ago and she developed these same symptoms. The pediatric specialists wondered if maybe at a later date she would be diagnosed with mild cerebral palsy? Other than her stiffness she was very healthy. She did require glasses at a year and a half. She moved on to an adoptive home and I keep in touch. She is doing wonderfully. I hope this helps.
B. b.

Hi M.,
As an Occupational therapy assistant, working 10 years in Early Intervention, I feel there are several things you can do for your son, your family, and your sanity.

1. Find out if there are parent support groups.

2. Educate yourself on your son's diagnosis/conditions. You can google it, putting "pediatric" in front of it.

3. Learn your son's rights and get a list of all the services offered in your area (ie; OT, PT, Speech, Vision, teacher, ect). He should have a service coordinator or case manager, whatever the term is in your area. That person should be able to point you in a direction.

The more you understand, I think the less stressed you'll feel. Try not to let yourself become overwhelmed. Accept help when you could use it and rest when you can. (Do you have family in the area?)
Don't be affraid to ask lots of questions and advocate for your son. The earlier you get started, the better for your son. Good luck to you and your famiy.