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From Natalie F., Wisconsin
February, 2010 -
Ryson was born on January 16, 2009 at 10:23am weighing 1lb 1oz and was 10 inches long. His original due date was April 29 so he was born 3 Ĺ months early. He was like a size of a Barbie doll! His hand was so small, my husbandís wedding ring fit around Rysonís arm. He was doing great and a day later breathing room air. A couple weeks went by and I remember getting a call right before church saying he was sick and they were starting him on medications. He finished the antibiotics and he was fine. But you can never trust a preemie. There are so many ups and downs and you never knew what you were walking into. Itís a whole different world in the NICU. I got to hold Ryson on January 30, we had to have 3 nurses help me because he was hooked up to the ventilator, and had so many IVís in him. Soon I was able to hold him every other day and then it turned into everyday.
Valentineís Day rolled around and Ryson was doing fine I held him and the next day I get a call that he is sick again. I go in on Sunday and the nurse said he has air in his bowel. They were taking x-rays every 6 hours to see if the air would just go away on its own. He kept desating and his blood pressure was really high. It broke my heart to leave to go home that night. I called through the night to see if the air went away. The next day I went into work and I get a call from his Doctor and he is so sick and that I should come over right away because she made it sound like he wasnít going to make it. I called my husband and we rushed right over to Waukesha Memorial Hospital. When we got there I still remember hearing the doctor tell me that his bowel perforated and he is really really sick and they are having Childrenís Hospital Transportation team coming here to get him to bring him to Childrenís. I ran up to Ryson and held his little hand, Ryson was pretty drugged up, when the transportation team arrived, I had to let go of him and I looked back and Rysonís head went up like he didnít want me to go. That was the worst day of my life. I never felt so much pain!!
They transported him to Childrenís by ambulance which I rode in and we had to wait in the lobby until they hook Ryson up to all the machines and got him situated. Then we had all the surgery, doctors, and everyone explain the procedure that was going to be done. I had to sign papers and all I did that day was pray Ryson would be okay. They had to do emergency surgery at the bedside, because he was so bad. They took out 12 inches of his intestine and they didnít sow him back up because they couldnít do the whole surgery that day. He was going to have to wait another 3 days for another surgery where they would put the intestines back in and give him an ostomy. The doctors would only say that Ryson was critically stable. After both the surgeries he was so swollen, he weighed about 3lb just because that was his water weight. The nurse said it would go down and he would get massages.
February goes by and he getting better, then in March they give him a head ultrasound and tell me he has PVL, which is the death of small areas of brain tissue around fluid-filled areas called ventricles. The damage creates "holes" in the brain. They said itís because when he was so sick, he didnít get enough oxygen in his brain and he was on so many blood pressure medications. I didnít care if Ryson had any kind of abnormalities, all I cared about that it wasnít anything life threatening!
In March and April he was getting better, he was using a nasal canual to breathe instead of being on a ventilator helping him breathe. Then the eye doctors would come in and keep checking his eyes. They were kinda getting worse. I get a call on April 19 and then said they will have to do surgery on him the next day because he had Retinopathy of prematurity Stage 4 (which is the most serious because the retinaís can detach.) So the next day Ryson had laser surgery on his eyes. The doctor told me in stage 4 there is partial detachment.
Finally May came, and he got another surgery to take his ostomy down. He did really good and was swollen but it went away pretty fast. They tried to feed him bolus feeds but Ryson couldnít stand too much at once and he was too small to take a whole bottle for feeding so they talked about putting a G-tube through his stomach. So he had to have one more surgery. June 5 was when they put the g-tube in and they feed him with a feeding put that would slowly put food in his stomach.
June 19 came, the greatest day of my life. The day Ryson would go home. He had to have an MRI to see the damage. Which they told me that the damage in his brain was only seen in 5% of babies and that his has a 80% chance of getting cerebral palsy. Again as long as it wasnít life threatening, I didnít care I just wanted him home with me. He had a car seat test which he passed. I had to get a boat load of medicines for him before we left. After all that was done we finally got to take our little man home!!
August comes up and I notice that heís shaking a lot more so I just want to check to see if he was having seizures, back in March in the NICU he had an EEG because a nurse thought he was having them but it turned out he wasnít. So I go in and get him an EEG and a nurse tell me that Ryson will have to get admitted to the hospital because his EEG is abnormal to the point where the doctor does not want to send me home. He was in the hospital for a 1 week in the seizure unit. Ryson had all these electrodes hooked up to him and when we thought he was have a seizure we would have to push a button and the nurses would count how many times he had an episode. He was also being videotaped. The neurologist couldnít correlate his spasms with the seizures; he has seizure all the time, like epilepsy. This is when the neurologist told us that he couldnít see. And she wasnít really nice about it. It took us by surprise because the NICU doctors never told us anything about that. I knew he wasnít going to have his peripheral vision because of his laser eye surgery, but she told us that Rysonís brain scan shows that he has no occipital lobe, which means he canít process the images. I knew he could see and I saw him tracing object so I didnít let her get me down. We were discharged with 2 medications to give Ryson to control his seizures.
On Oct. 31, Ryson got his H1N1 shot and the next day he had a temperature of 104. I thought it was just a reaction to the vaccine, but we had to take him to the emergency room and he was admitted because he had pneumonia and H1N1. He was in the hospital for a week so I lived there with him for a week. He had to come home on oxygen and get nebulizer treatments.
In January we went to Madison to the Duehr Dean Clinic to see a pediatric ophthalmologist. He suggest Ryson get an VEP where they hook up electrodes to his head and flash a bright light in his eyes to see if anything registers in his brain. When they did that, nothing was registering but they said that doesnít mean his canít see, his brain just might be rewired and they donít know where his sight is in the brain.
Then the birth to 3 program had someone from the state come to the house and do a vision evaluation. She said he can see and he sees 20/93-119. Heís still visually impaired, but at least heís not blind.
Rysonís come so far and heís a fighter!! Heís a happy little boy and God has TRULY blessed him and gave me the best present I could ever ask for, my son!
UPDATE - July, 2010:
Ryson is doing good. Just this month he started going to the Center for theBlind and Visually Impaired twice a week, where he is getting his physicaltherapy, occupational therapy, speech, vision and sometimes a teacher workswith him. I just saw his eye doctor a couple weeks ago and he agreed togiving Ryson glasses so I have to get Ryson fitted with glasses. We stilldonít know what he sees but maybe with the help of glasses he will see a bitbetter! We were just on vacation last week in Michigan and we took Ryson inthe lake and he was in a blow up toy and the waves were making him go up anddown in it, when we asked him if he wanted to get out or wanted more, hemade the sign for MORE, by putting his hands together. Speech has beenteaching him a little sign language for when he eats so thatís how he knewhe wanted to be in the water more! At the center for the blind, they have astander which helps him stand with support. He stood for 10 minutes! Iím soproud of him. He smiles so much now and thereís this sound he makes with hisnose that he just cracks himself up with!! At the end of April since hewasnít gaining weight well, the doctor gave him a GJ tube where most of hisfeeding bypass the stomach and go right into his small intestine so hedoesnít throw up at all. So now heís gaining an ounce a day and is already18lb 13 Ĺ oz. In May he was put on muscle relaxers, which heís a littlemore stretchable. He still goes in his box and even turns himself 180degrees in it. His favorite thing in it would have to be the big pan withthe beads in it that he kicks because it makes so much noise. I feel soblessed that with all that happened to him, heís such a happy baby and I getto see him progress everyday.
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