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
Thursday
NICU Equipment
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.
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.
Tuesday
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/
Monday
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
Sunday
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.
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 t
herapy, h
e 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!
herapy, h
e 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!Saturday
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.
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!
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!
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