Uses for this Blog

This blog was created for parent's and families of children in a NICU. I want to make available to you resources in one place that are out there for families that find themselves with sick babies. As you read this, please ignore the dates. You are actually reading the oldest posts first and the newest posts last. I hope that you find this sight helpful.

Preemie Weight Conversion Chart

I have provided a link to convert your babies weight from grams (what the hospital weighs the babies in) to pounds and ounces, something more familar to the general public. To use the chart in the link first, locate on the chart the babies weight in grams. Then, locate the numbers to the left for pounds and to the top for ounces. Your babies nurse can also convert this for you.
http://www.babylinq.com/index.asp?PageAction=Custom&ID=108

What Makes Me an "Expert"

I am no expert, just a mom who learned a lot about resources out there for parents of preemies and/or children with disabilities. Donavon, our son was born on February 9, 2007 weighing 1 lb and 8oz. He was a micro preemie, a 24 weeker, our tiny miracle. He was transported from Baptist North to "big" Baptist and I didn't get to see him again until February,11. Nothing can prepare a parent who is seeing their preemie for the first time. He was 9 inches long and beet red, his skin was transparent. He had so many tubes and wires coming off of him, and yet the first thing I focused on was just how perfect he was.
He would not stay long at Baptist though, he had obstacle after obstacle that Baptist could not deal with. The Doctor's are wonderful there, they just are not equip for extreme cases.Donavon was born with *brain bleeds, grades 3 and 4 the highest on the scale. This was a pressing issue the days after he was born, but were soon overshadowed by a condition called *NEC (Necrotizing Entercolitis). When Donavon was fed by feeding tube for the first time his intestines were not prepared to digest food and perforated. His abdomen turned black and he was on the brink of kidney failure for 48 hours. He was getting blood and platelets around the clock and many medicines as well. Finally, with prayers from around the state and a wet diaper, he pulled through it. To this day every Doctor that sees him tells us what a blessing it was that he pulled through.
Surgery #1, March 22, 2007: Six weeks after he arrived at Baptist he was transported to Arkansas Children's Hospital. Within hours of his arrival he was in emergency surgery to save his life. Donavon's bowels not only perforated in 1 place but in 3, the surgeon said this was very rare. After 3 long hours of surgery Donavon came out doing great and continued to heal over the next several months.
Surgery #2, April 23, 2007: Donavon had a condition in both eyes called *Retinopathy that needed surgery to ensure vision. This typically takes 30 min. per eye, but Donavon took 1 hr per eye. The surgery was a success, at this time he wears glasses for near sightedness.

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NICU Equipment

I found this sight helpful in better understanding the equipment in the NICU.

http://www.aboutkidshealth.ca/PrematureBabies/NICU-Equipment.aspx?articleID=9429&categoryID=PI-nh1-11a

What Makes Me an Expert Continued...

Sending your baby to surgery never gets easier, as the parent you hold it together and comfort your baby because you have to be their strength. Prayer plays a large role in our lives, it is never far from our minds that we would not have Donavon had the Lord decided it was time to bring him home. Other thing's that gave us piece of mind was knowing he would not remember this when he was older and like most babies, he was so incredibly resilient. Donavon would typically be wide awake and in good spirits in the recovery room following most of his surgeries.
Surgery #3, May 9, 2007: A Ventricular Access Device was placed in Donavon's head due to "water on the brain", *Hydrocephalus. The brain bleeds made his brain unable to drain spinal fluid off of it. His head began to swell and the Doctor's watched it closely. He had a spinal tap as well as the fluid drained directly off of his brain when the Doctor's realized something had to be done quickly. The device allowed Doctor's to drain the fluid off with out being invasive to his brain which would make for an increased chance for infection. This device was a temporary answer, a *shunt would be placed at a later date for a long term solution. This surgery lasted 30 min.
Surgery #4, May 10, 2007: Donavon's intestines appeared to be healthy enough to have them put back in place, they were working well. During this surgery he also had a *G-Tube placed to feed him through for an extended period of time. The surgery went great, the Doctor's were very pleased with the results from the initial surgery, no more bowel had died, it was all in working order. The surgery took 3 hours.

March of Dimes

The March of Dimes is dedicated to finding answers regarding premature births and low weight babies. There is good information for NICU parents throughout the website as well as ways you can get involved with this cause if your interested. http://www.marchofdimes.com/

NICU Terms and Definitions

This is a sight that I found to be helpful when I was looking for definitions on NICU terms.

http://www.ttmf.org/glossary.html

What Makes Me an "Expert" Continued...

Surgery #5, June 27: Shunt placement on the right back side of Donavon's brain. The tubing that pulls the fluid off of the brain is routed through his tummy. This could be risky because of all of the scar tissue in his tummy. The surgery went great and the results were quick to appear. He had a bump on his head where the Ventricular Access Device was placed and it went down fast.

Surgery #6, July 6: The surgeons told us from the beginning that the shunt could malfuncion and it did, very quickly. Donavon had a shunt revision to change out a part in the shunt to ensure the fluid is being pulled off of his brain. It was a success, for now...

HOMECOMING!!!! August 15, 2007 Donavon came home, finally and we could not have been happier. We thought he was going home with us 3 weeks prior to this. There were set backs with his feeding and we had to wait. Better to wait than to get him home just to go back! The 2 night stay in the Multi Purpose Room in the NICU was a challenge. There was no sleep to be had, Donavon had not slept in a different place in nearly 5 months so he was upset. Nurses and Doctor's were in and out of the room at all hours, helping us with the adjustment to home. Once we got home Donavon was even more upset for about 1 month, again he had been anywhere except for bed #28 at ACH for 5 months. It was a change for us all, but once he got settled in to his new routine life was good.

Surgery #7, September 21: The Ventricular Access Device was removed. This was a much needed surgery due to the fact that the device malfunctioned and created a huge goose egg on top of his head. This operation lasted about 2 hours.

Surgery #8, October 17: The last surgery was great for getting the bump off of his head but it caused yet another shunt malfuntion. Donavon had another shunt revision and this time they placed the tubing into the lining of his lungs because there was too much scar tissue in his tummy to support the extra fluid. This surgery was only 1 hour and remains a success.

Surgery #9, January 3, 2008: A circumcision and 4 hernia's were on the agenda for this surgery. Donavon had 2 incisional hernia's and 2 groinal. The groinal are very common in preemies. This surgery was 1 hour.

Where Donavon is Today

Donavon is thriving at home. He is in all 4 therapies PT, OT, Speech, and Developmental. His face lights up when we get to therapy, he loves to learn new things. He talks often and the one word that we understand is "hey" which he says with much gusto. We were able to take him off of his oxygen in January. He still remains on a feed pump, but he recently passed his swallow study on the first try. We are feeding him small amounts of thick baby food twice a day and working our way up. His Neurologist told us about a month and a half ago that he has Cerebral Palsy which is a result of the brain bleeds. We were glad to get an answer on this so that he can move forward. He has several pieces of equipment as well as braces for his ankles and splints for his hands to help him progress. I will be posting what I learn about Cerebral Palsy in the future. He is such a trooper, God has been so good to us and we are excited about the future. He has come so far and continues to amaze us, with his determination he will go far in life!

TLC for Your NICU Baby

Calling to check on Donavon was around the clock duty at our house. Visiting him was part of our daily routine, but when we were at home or work we called several times. His nurses would be very busy with at least 1 other baby and we knew calling was a good way to stay informed.

Reading to our son was something I looked forward to every single day of his stay in the NICU. From the day that he was born it was something I could do for him. Even if it meant whispering the words from a day calender with inspirational thoughts in it, this was a way for him to know I was there. When a baby is as small as Donavon was, touching was not always an option. It is very stressful for them because they are still developing, it can be more than a tiny one can take. Changing Diapers, whoever thought someone would look forward to changing a diaper? This was one of the first hands on experiences my husband and I ever had with Donavon. I changed every diaper I could for the entire time he was in the NICU. It was very nurturing to me and I enjoyed it no matter what he had in store for us!
Rubbing lotion on your baby can be a very nice experience for you both. Donavon was under a warmer for several months and these tend to dry babies out. Lotion was a way I could connect with him mentally and physically because it was soothing to him and made him happy.
Bathing Donavon was not something that occurred daily, instead it was 2 times a week. We helped with the baths often. This was another way for us to be involved with him on a parental level, taking care of baths was always a great experience.
Dressing your baby may not be something that you are there for in the wee hours of the morning, but should you want to change them when you arrive go ahead. We changed Donavon after big throw-ups and urination's which were almost daily occurrences.
Feeding your baby has to be one of the best experiences. We never had this opportunity because he was and still is on a feeding tube, but the parents I saw nurturing their babies in this way looked so peaceful.
Holding your baby is the greatest reward in the NICU. We each held Donavon once after he was a month old. After that first time we had to wait 2 more months to hold again due to the surgeries. We were completely understanding in both cases, whatever was best for him was what we wanted. Once he was in our arms the bond just grew. Donavon just melted into us and to this day he still loves to be held. There is a way to hold your baby skin-to-skin known as Kangaroo Care. This is just a more intimate way to bond with your baby. They lay your baby on your bare chest (women keep their bras on) and the baby is in a diaper only. Donavon really enjoyed this as well as us.

Nail care is a duty left for the parents or guardians, it is as I understand it hospital policy around the country. To be prepared, bring a pair of nail clippers with you if your baby spends an extended period of time in the NICU.

Understanding that Doctor's and Nurses are there to do what is absolutely best for your baby will bring you peace of mind. You may feel as though there is nothing for you to do in the first couple of days but, when your ready let the nurses know that you want to be involved with as much of your babies care as possible. Before you know it, you will be a pro!

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.