The People You Meet

Nurses: Nurses are your babies second line of defense to a parent or guardian. They typically spend 10 to 12 hours a day at the bed side. At the 2 hospitals Donavon was at there were nurses called "primaries" or "primary nurses". If you find a nurse that has a good connection with your baby and your family it may be a good idea to have a conversation about them becoming a primary nurse for your baby. This ensures that typically if they are working they will be your child's caretaker. This was the greatest comfort I found when I returned to work, they became part of the family. It is nice to know that when mommy and daddy are gone there is someone there that loves your baby.
Doctor's: Neonatologist are the "main" Doctor's in the NICU. They will be in and out all day everyday checking on each and every baby in the NICU. They will be the one's to make the judgement calls for the baby in getting specialist and/or surgeons in. They also decide on medicines, oxygen levels, x-rays, scans, when mom and dad can begin holding a baby, and much more. Surgeons will also round in the NICU. If your baby has surgery at any point while in the hospital, a Surgeon will follow up until they are no longer needed.
Respiratory Therapist: If there is a baby on a vent, oxygen, this team will check levels on the machine often as well as administer any medications needed for the lungs such as an inhaler. If there is a baby not breathing good, desating, they may come and "bag" the child until they can breathe without it again.
Pastoral Care: If you are interested there is Pastoral Care at most hospitals. They will come and pray with you or take prayer requests. There is also a Chapel in most hospitals to have private time to think and pray.
Therapist: Some babies will need therapy from very early on. There are Physical, Speech, and Occupational Therapist to work with babies several times a week. Donavon has gotten therapy since 1 month old.
Other Parents/Families: It is almost impossible to avoid other families. Some hospitals have babies in close quarters and neighbors are nice to talk to. There are also NICU waiting rooms for parents and families where a lot of talk happens. Some people are relieved to meet people going through similar situations.

A Moment for Parents

Scrap Booking was something I really enjoyed doing while taking a break from the NICU. This is offered through the hospital at different times of the month . If you do not see a calendar with dates and times on it just ask your nurse for the information.

Support Groups are also available through the NICU and again if you do not see times posted ask your nurse and they will get that information to you।

Parents often find that time in the NICU will consume them. I never felt right about leaving Donavon early to go out to dinner, but once I got to sit down and relax I realized how necessary it was. You have to take breaks from the hospital and/or the NICU on occasion. No one will think that you love your child any less if you do not spend 24/7 at your babies bedside. You will be better for the time away.

Donavon Pics, Tiny Baby and Big Boy

Financial Resources

Social Workers: There will be a Social Worker Assigned to your baby once in the NICU. You should meet a Social Worker within the first week in the NICU. If you do not, ask your nurse how to get in touch with someone soon. Social Workers are a lot of help in finding help for your baby. For example, if your baby weighs 1200 grams or less a Social Worker can help you apply for Medicaid. Babies this small are considered "without resources" and once qualified Medicaid will pay the portion of the hospital bill that insurance does not cover. Donavon was on 2 health insurance plans and Medicaid. He weighed 690 grams at birth.
Financial Advisor's: Before taking your baby home from the hospital you will have an opportunity to speak with a financial advisor, take this opportunity. There is a program through Medicaid called TEFRA, Tax Equity and Fiscal Responsibilty Act of 1982. This extends Medicaid to babies with disabilities. There is a monthly premium depending on total monthly household income. This is for the families that make too much for regular Medicaid. The application process is quick if done at the hospital. There are many more options to look at depending on the situation that a Financial Advisor may help with.
Case Worker's: Once at home, if your child is on any state funded program there will be Case Worker's involved. Some will get in touch with you, some you will have to find. If you use Medicaid or TEFRA be sure to get in touch with your counties DHS office. There will be a case worker assigned through this office. There may also be a Case Worker through your private insurance, more than likely you have been in touch with them from the beginning of the hospital stay. They will continue to keep in contact as long as your child needs them. They are there to work for your child and get items paid for through your insurance company that they may not typically cover.
SSI (Supplemental Security Income) is another resource that may benefit your baby. This is a program where a check is sent to your baby to help offset expenses. It will be based on the household gross (before taxes) monthly income. For more information, refer to the following link:
http://www.socialsecurity.gov/ssi/index.htm
WIC ( Women, Infants, and Children) is a program made to help nutrition in women, infants, and children within certain guidlines. There is a household gross (before taxes) monthly income that must be met to qualify. For more information, refer to the following link: http://www.fns.usda.gov/wic/Contacts/statealpha.HTM

Great Therapy Place in Central AR

I have had experiences with 3 different Therapy spot's in central AR and the best that I have found is Playtime Therapies in Sherwood, AR. This group is very prompt and focused on getting children in therapy ASAP. There always seems to be a bit of a waiting list for one of the three therapies offered, but it is nothing like the wait that we have endured at other establishments. They offer Physical Therapy, Speech, and Occupational Therapy. All of the therapist that teach Donavon have such a wonderful connection with him, I highly recommend this place.
For more information please contact Playtime Therapies at (501) 833-1912.

Donavon's First Braces

With CP (Cerebral Palsy) has come equipment to better prepare Donavon for his future. The first two things that he has been fitted for are hand splint's and "AFO's", ankle-foot orthoses (orthosis = brace) or you may even hear people call these "boot's".

He has been using the wrist splint's for 2 month's now and he has never minded them. He has a grasp as tight as mine and he holds it most of the time in both hand's because he has high tone in his hands. The splint's are suppose to encourage him to open his hand's more and he seems to be doing so. He wears these all day most day's. We do take them off at night when he goes to bed. The one thing that I think that kid's will enjoy with these is that they get to pick the color's for the splint's. Kid's grow fast, so they should get a new pair 2-3 times a year.


His leg's are another place in his body with high tone. He prefers to keep his legs tucked close to his body and the braces help to straighten them while stretching the muscles. The braces did take some getting used to. After a month of his physical therapist working with him and me some at home, he now wears them all day most day's with no problem. As with the wrist splint's, he needs to wear these all day. They can be worn with or without shoe's and he prefers to wear them with tall sock's for some comfort.

*I am actually posting this on August 6, 2006.