Dillon at birth. 
Dillon's going home.
I had an appoinment on Thursday November 11th for a routine appointment. I had been feeling kind of "yucky" the last couple of days, I had felt alot of discomfort and more cramping. The ultrasound showed that I had little to no amniotic fluid left and they decided he needed to be taken right away.
I was very nervous about the birth. I wanted to hang in there so he would not be quite so early, but at the same time, I was anxious to get the ordeal over with and to meet the miracle face! I was also nervous because noone knew what to expect and how he would do, and that reality would set in that I really am having a child with a disability!
I was in denial that the birth was actually happening that day.. or should I say within the next hour or so! But I called my family and friends to let them know what was happening.
They prepped me for surgery.. another c-section. They had some trouble getting in the epidural, and had to put it in a second time. The first time, they hit a nerve and I lost feeling in my entire left side of my body. It was quite scarry but once they redid the edidural, I was fine. ( although I was sore still for about a month afterwards from it).
The c-section went fine and soon I heard Dillon crying. I started crying myself... it had been a long anticipated wait to see him after what we had been through together. I could not wait to see what he would look like. They brought him right over to me for me to see, and let me kiss him and then took him off to examine him. They had never had a baby born at that hospital before that had the fetal surgery, so they were not quite sure what to expect and wanted to make sure he would be ok, especially since he was premature
He was born at a day short of my 35th week (5 weeks premature), 10 weeks after the fetal surgery, and a day after my birthday. He was breathing on his own, came out kicking and never had to be on a respirator. He was taken to the NICU, the only problem he was having was he was not able to maintain his body temperature.
His ventricles began to grow in size and he was showing symptoms and signs of Hydrocephalus. (hydrocephalus is where spinal fluid collects in the brain) This is very common in children with spina bifida. So on November 18th at just a week old, he underwent surgery to place a shunt. He received the first programmable shunt that childrens hospital here in Omaha had put in. A programmable shunt is supposed to be better then a regular shunt, because the pressure of how quickly it drains the fluid can be adjusted without surgery.
He did very well with the surgery, and got to come home a couple days later. He came home just in time for his daddys birthday which was November 22nd. Dillon was also born with mild bilateral club feet and hip displacia. These are also two things that are common with spina bifida.
Dillons club feet have been corrected with casting them for about 2 months. When he got those off, he received AFO's (ankle-feet orthotics) to keep his feet in the correct position and flat. He continues to wear those most all the time. We thought he was going to have to have surgery on them to release the muscle to fix the feet, but they have surprisingly been corrected with out the need for surgery.
Dillon wore a pavlik harness to correct his his displacia. He wore this brace till he was about 3 1/2 months old. The harness kept his hips in the socket to give the muscles a chance to grow around the hips to keep them in place. Dillon was thought to have an L3-S3 lesion, but as it turns out he has an L4-S3. Typically the harness is not effective in a lesion that high, but with Dillons remarkable leg movement, we were willing to give it a try. It is a good thing we did, because ultrasounds are showing that the hips went back into place and are remaining in place even with impact on them.
His orthopedic doctor (Dr. Ginsburg) is amazed at Dillon's success with his feet and hips and his leg movement as well. He thinks Dillon's chance of walking is going to be very good. Dillon has had wonderful care from his ortho. There are a lot of ortho doctors out there that are not willing to treat the hip displacia with spina bifida because of the high chance of it not being effective or remaining in place. I am very glad we gave it a chance since his hips are back in and so far staying in. He is a great doctor and highly respect and admire him for what he has done for Dillon. With him, Dillon's chance of walking is so much beter!!
Below is a picture of Dillon with Dr. Ginsburg. The other is Dillon with Dr. Ginsburg and his nurses Mary Jo and Cindy. The nurses are wonderful as well and have always been good to us and taken good care of us.
Thank you guys, you are a wonderful bunch! :o)
 
Dillon is also cathed every 4 hours for residual. He has control of his bladder and bowels, but he was put on a medicine called Ditropan because he has a "high pressure" bladder which is causing dialation of his right kidney (referred to as hydronephrosis). On the medicine he is not able to go by himself, but hopefully the kidney will improve and later on the road we can discontinue cathing him.
I have a long road ahead of myself with Dillon, but I honestly believe that God gave me Dillon for a reason, and I will do whatever I can to give him a normal healthy life. He is one tough little guy and has so much strength. He is truly a miracle and a blessing!!! I thank God every day for Dillon and the doctors at Vanderbilt, because I honestly believe Dillon would not be doing as well as he is without the surgery!!!!
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Dillon's Shunt Experiences
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Dillon had his first shunt put in at just one week old. He did really well with it until December 5th, I took him into ER because
he was running a high fever that was not going down with tylenol, he was very lethargic and would not eat. He was diagnosed
with meningitis and a secondary shunt infection and was taken into the operating room just a few hours later to have the shunt
removed and an external drain (to continue to drain his hydrocephalus since he had to have the shunt removed) put in.
The days in the hospital this time were scarry. We were given a grim outlook on Dillon's future
by many doctors taking care of him. We were told he may not survive. The CT scans of his brain were looking very cloudy, and they were concerned
about permanent damage the bacterial meningitis had done to his brain. If he did survive, we were told he would be moderately to severly disable,
would possibly be blind, deaf, have seizures. These were the most severe of the complications that were presented to us. Other complications
included speech delays, trouble concentrating and mood swings.
Dillon kept fighting and they continued heavy doses of IV antiobiotics to get rid of the infection quickly. We spent a few days in the PICU
(Pediactric intensive care unit)and as he recovered, were able to move up to a regular floor.
Dillon started having seizures from the infection and was on a medication called phenobarbitol to control them.
He only had them for acouple days, but would remain on
the medication (phenobarbitol) for acouple more months just to make sure he would not have anymore. That was the scarriest things for me to see
my little 3 week old baby having a seizure and not being able to do anything for him!! He was in the hospital for another 10 days,
and during that time, he went into surgery again to have a "central line" (a semi permanent IV so that he could be sent home
with IV antiobiotics) put in. During that surgery, they removed the external drain in hopes the fluid would not build up too much.
Dillon got to go home on Brooke's birthday which was December 14th without a shunt. They wanted to leave it out until the infection
cleared up totally and also there were hopes that he would not need it back in. We continued the IV antibiotics for another month and a half and
had home health nurses come over a couple times a day to help me administer those medications.
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No such luck, on December 28th, Dillon's soft spot was getting full and starting to bulge,
he was very sleepy and poor appetite so he had the shunt put back in again and came home just 2 days afterwards.
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We have yet another problem... at the end of February, I noticed Dillon starting to have symptoms again. Doctors kept telling me not to worry unless he was throwing up, but I didnt want it to get to that point. I asked for them to do an ultrasound of his head, and it turned out that one ventricle was alittle dialated, but the right vent was very full and not draining at all. He had a shunt malfunction, but the neuro surgeon wasnt quite sure why. So on February 23rd, they did an endoscopic surgery to see if they could figure out why it was malfunctioning, but nothing was found. The next day, the ventricles were still full. This was very frustating, as I felt like Dillon had just had a needless surgery.
~*Our Return to Vanderbilt*~
As soon as Dillon was released from the hopital here in Omaha, Jerry and I decided to make the drive to Nashville to get a second opinion. We drove alittle over 12 hours to get there because it was recommended to us that with the pressure in Dillon's head, we shouldnt fly. The drive went pretty fast actually, and the weather was very nice all week. Our only concern was that Dillon was continuing to throw up, so we were hoping to get there in time.
We arrived and saw Doctor Tulipan on Monday Febrary 28th. He saw Dillon and told us the shunt definetely needed to be replaced, for some reason the programmable shunt just didn't seem to be working any better for him. Dr. Tulipan wanted to admit him first and run tests to make sure there was no infections before they did the surgery.
On March 1st, Dillon went in for his shunt revision. It went very well and he was released from the hospital the very next day and we made the drive home once again.
Dillon has done very well since his shunt revision. He is alot more alert, eating almost too well, and is starting to hold up his head very well too. I guess 3rd time is a charm!!
He is a very happy baby and is so laid back and easy going. He amazes me with his strength every day! God has really been with him, and he is going to be one tough little guy.
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