Well I was just writing to update about our week/weekend. On Friday Everest SMILED at me! it was quick and short lived but it was a smile! I have been playing with him and he seems a lot more interested and tells me lots of stories which is nice :-)
We are getting into our bedtime routine. We eat a bottle, then rock and read a story in his room w/ the lights dimmed. And then I will wrap him up and put him in his crib. He is doing pretty well! We do that around 9, and he normally wakes up around 130 or 2. We eat a little and go back to bed! He wakes up again around 6 or 630, and eats and falls back to sleep for a while again. Then he seems to be up for the day! He takes a little power nap here or there but for the most part hes awake. So we are getting there!
We went out to lunch with my dad and Angelica, my grandma, uncle Matt aunt Andrea and cousin Hailey on sunday. it was nice! and then Everest and I hung out with Jasons mom while Jason and John went to shoot their bows.
We have a busy week!
Neurosurgery appointment is Tuesday, and we get the car inspected too haha and then Thursday we have his OT coming for the first time and Friday he has his 4 month check up! Saturday is Devyns 6th birthday!
No new pics yet! I will update those soon!
Monday, September 28, 2009
Tuesday, September 22, 2009
Early Intervention Evaluation
Yesterday we had early intervetion come out to evaluate Everest. In the state of PA(our 
county anyway) they evaluate by their actual age not corrected age. So they looked at him as a 3.5 month old not a 6.5 week old. ANYHOW, things went really well. I was concerned b/c hes not very social, he will look at us but its sorta boring I guess and he'll look away. He hasnt smiled AT us yet either. So the OT played with him a little bit and they asked us a bunch of questions about him. He scored below average for a 3.5 month old. The OT noticed that he lays his head to the right(which he does all the time not no the back or the left side) and he reaches across his body with his left arm to the right side. She said babies learn best at "midline" which is basically pulling each arm to the center of their body. We have gotten some ideas on how to help him come to midline and also some ideas for play time to get him to work his neck muscles and eyes, and become more social. They are going to keep a close eye on his muscle tone since he is at high risk for CP.
county anyway) they evaluate by their actual age not corrected age. So they looked at him as a 3.5 month old not a 6.5 week old. ANYHOW, things went really well. I was concerned b/c hes not very social, he will look at us but its sorta boring I guess and he'll look away. He hasnt smiled AT us yet either. So the OT played with him a little bit and they asked us a bunch of questions about him. He scored below average for a 3.5 month old. The OT noticed that he lays his head to the right(which he does all the time not no the back or the left side) and he reaches across his body with his left arm to the right side. She said babies learn best at "midline" which is basically pulling each arm to the center of their body. We have gotten some ideas on how to help him come to midline and also some ideas for play time to get him to work his neck muscles and eyes, and become more social. They are going to keep a close eye on his muscle tone since he is at high risk for CP. Other than that, things have been pretty "normal" around here. We are STILL working on trying to sleep at night. He is so spiratic in his sleep its just so hard to get a schedule. We are going to work on a bedtime routine.
In 2 weeks Everest and I are going to take a trip to North Carolina to visit Megan and Gatsby! I am so excited about that, its a long drive, but we will manage!
Here is Laney Lou and Gatsby at Speewell Forge and Here is Megan and I on our way to Philly to visit my dad and Angelica!
Friday, September 18, 2009
Try this again
We are going to try this blog thing again! :-)
We will start from the begining
I went to the doctors for my regular check up, and had gained 6 lbs in 1 week and the nurse consulted the doctor. They thought that I was retaining fluid, and I was to "take it easy" and had another appointment scheduled for a week later. I went in a few days later because I had a headache with blurred vision for 2 days. They ordered a 24 hour urine collection and scheduled a f/u appointment for 2 days later. When i went back i felt normal, the headache had subsided and I felt good! I had an elevated BP 140/90, which was not normal at all for me i had always been right around 110/60. So they put me on at home bed rest. That was Friday May 22nd. I had an appointment scheduled for May 27th already and they said to keep that. When I went back into the doctors on Wednesday, they didnt feel comfortable sending me home, b/c my BP was still higher than normal, and I had spots in my vision. I was admitted for observation on the 27th. They did another 24 hour urine collection in the hospital, and the protein had doubled. They transfered my care to the maternal fetal medicine doctors care. I was at 30 weeks gestation and they told me ideally they would get me to 32 weeks. Come friday the 29th, they decided they didnt want me to go any further and they were going to induce labor. I was induced Friday evening at 5PM, and was put on strict orders. No more than 1 person in my room at a time, no TV(which i found out AFTER delivery was because they were worried it would cause a seizure). The whole 30+ hours of labor is kind of a blur, i remember them putting the balloon in the dialate my cervix, having my water broken, the epidural only taking effect in my right leg mid thigh down, them coming in several times saying we are going to go for a c-section and then coming back in saying we will wait a little longer. Saturday night at around 1130 they turned off the pitocin b/c Everest wasnt tollerating the contractions. I fell asleep and woke up at 1:30, with the urge to push. I woke Jason up, he called the nurse. She casually walked into the room, and I said "I need to push!" she got the resident, and she checked me, and said " hes right there!" The lights came on, and about 10 people were in the room ( 3 docs for me, 2 nurses, Jason, the NICU team which i am not exactly sure how many of them there were at least 3). They tore half the bed off and he was out in about 3 pushes. Everest Patrick Kennedy was born at 2:02AM Sunday May 31st. 3lbs 9 0z and 17 inches long. Everest did very well the first 24 hours, he was on CPAP and stable. Then shortly after that 24 hours he deteriorated pretty quick. He developed respiratory distress syndrome. He was not doing well on the conventional respirator so they put him on a oscillator. He was on the oscillator for 3 or 4 days(cant remember exactly how long), back to the conventional vent and then to the si-pap shortly after. Then at 10 days old, we got news they did an ultra sound of his head ( which they do with any preemie born before 32 weeks). He had a grade 3 IVH w/ hydracephalus. We met with the neurosurgeons and they explained to us that they were going to place a resirvoir because he wasnt big enough for a shunt at that point. So when he was 2 weeks old, he went to surgery and had a resirvoir placed. Everything went well! At 4 weeks old he was big enough for a shunt, and we scheduled the shunt surgery. He went in on July 1st for his shunt placement. He was scheduled to be in the OR for 100minutes and they took him in at 8. So 10:30 came and went and we heard nothing, and I began to panic. I thought this is taking too long something went wrong! Another hour came and went with no word. Finallly we get a call to go up to the NICU( no dr. spoke to us just got word from the volunteer that we could go up). So we go in and see him, and his nurse tells us hes been there for 2 hours, didnt we get contacted by the sugical team? Nope! they left us sitting there for 2 hours worried sick. But the important thing is Everest was ok and the surgery went well. basically 2 weeks to the day after his 1st shunt was placed, he was back in the OR due to the shunt being "superficial" in a spot on the top of his head, and it was about to break through his skin. We made it well known that we were forgotten about in the waiting room last time, and we were not very happy! We had the surgeon meet us in the waiting room, who was very thorough in explaining everything to us this time! (same one that did his 1st shunt surgery). He recoverd very quickly from the 2nd shunt surgery, and was moved to the step down room as a feeder/grower. We were just learning how to eat from the bottle! Pretty much as soon as we got used to the idea of him coming home soon, he had a NEC scare. NEC is a GI issue that could cause him to lose part of his bowel due to the blood flow to a certain spot of the bowel being comprimised. So back out to the main floor we went. He was taken off feeds, put on IV fluids and antibiotics. They were taking X-rays of his belly every 6 hours to make sure things didint get worse. They were to place a PICC line, because he was going to have the antibiotics for 14 days and would need the IV for a bit longer than that. Well it took 3 tries to get one placed. After 2 days it went bad and they had to place a new one in the other arm. 2 days later that one went bad. So they had pediatric surgery come to do a "cut down" on his leg to get a better PICC placed. They made an incision in his inner thigh, and found a bigger vein and placed the PICC. That has lasted so far! They began to introduce feeds once again very very slowly!
He thrived after the NEC scare, and re-learned to eat! He was getting a voice and liked to be walked around the floor by a nurse. We were told on August8th that he will probably be coming home soon! so we prepared ourselves for that (and tried not to get too excited since we were shot down with that idea last time). His nursery was already set up and just needed to baby for it! So August 10th they did a bunch of final tests and we were scheduled to come home on the 11th. We were in there bright and early, but had to wait for a while to get paper work done and his exit evaluation done by the attending. We brought him home on August 11th around 3pm! He has been home for a little other a month now and doing fabulous! He started to sleep about 6 hours at night which is amazing! We still dont have a schedule down but thats ok. He was at the pediatric surgeon yesterday, and weighed 10lbs! what a big big boy! He was 7lbs when he was discharged. He had a follow up with the neurosurgeon and they are pleased with his shunt. He will have an MRI done here in the enxt few months to get a better look at his brain/ventricles. We have an early intervention evaluation for monday to see if he qualifies for some therapy. The physical therapist and occupational therapist that saw him in the NICU think he would benefit from getting therapy to help him develop "normally".
Now i will share some pictures throughout our journey so far!
Here are a few pictures to go along.
We will start from the begining
I went to the doctors for my regular check up, and had gained 6 lbs in 1 week and the nurse consulted the doctor. They thought that I was retaining fluid, and I was to "take it easy" and had another appointment scheduled for a week later. I went in a few days later because I had a headache with blurred vision for 2 days. They ordered a 24 hour urine collection and scheduled a f/u appointment for 2 days later. When i went back i felt normal, the headache had subsided and I felt good! I had an elevated BP 140/90, which was not normal at all for me i had always been right around 110/60. So they put me on at home bed rest. That was Friday May 22nd. I had an appointment scheduled for May 27th already and they said to keep that. When I went back into the doctors on Wednesday, they didnt feel comfortable sending me home, b/c my BP was still higher than normal, and I had spots in my vision. I was admitted for observation on the 27th. They did another 24 hour urine collection in the hospital, and the protein had doubled. They transfered my care to the maternal fetal medicine doctors care. I was at 30 weeks gestation and they told me ideally they would get me to 32 weeks. Come friday the 29th, they decided they didnt want me to go any further and they were going to induce labor. I was induced Friday evening at 5PM, and was put on strict orders. No more than 1 person in my room at a time, no TV(which i found out AFTER delivery was because they were worried it would cause a seizure). The whole 30+ hours of labor is kind of a blur, i remember them putting the balloon in the dialate my cervix, having my water broken, the epidural only taking effect in my right leg mid thigh down, them coming in several times saying we are going to go for a c-section and then coming back in saying we will wait a little longer. Saturday night at around 1130 they turned off the pitocin b/c Everest wasnt tollerating the contractions. I fell asleep and woke up at 1:30, with the urge to push. I woke Jason up, he called the nurse. She casually walked into the room, and I said "I need to push!" she got the resident, and she checked me, and said " hes right there!" The lights came on, and about 10 people were in the room ( 3 docs for me, 2 nurses, Jason, the NICU team which i am not exactly sure how many of them there were at least 3). They tore half the bed off and he was out in about 3 pushes. Everest Patrick Kennedy was born at 2:02AM Sunday May 31st. 3lbs 9 0z and 17 inches long. Everest did very well the first 24 hours, he was on CPAP and stable. Then shortly after that 24 hours he deteriorated pretty quick. He developed respiratory distress syndrome. He was not doing well on the conventional respirator so they put him on a oscillator. He was on the oscillator for 3 or 4 days(cant remember exactly how long), back to the conventional vent and then to the si-pap shortly after. Then at 10 days old, we got news they did an ultra sound of his head ( which they do with any preemie born before 32 weeks). He had a grade 3 IVH w/ hydracephalus. We met with the neurosurgeons and they explained to us that they were going to place a resirvoir because he wasnt big enough for a shunt at that point. So when he was 2 weeks old, he went to surgery and had a resirvoir placed. Everything went well! At 4 weeks old he was big enough for a shunt, and we scheduled the shunt surgery. He went in on July 1st for his shunt placement. He was scheduled to be in the OR for 100minutes and they took him in at 8. So 10:30 came and went and we heard nothing, and I began to panic. I thought this is taking too long something went wrong! Another hour came and went with no word. Finallly we get a call to go up to the NICU( no dr. spoke to us just got word from the volunteer that we could go up). So we go in and see him, and his nurse tells us hes been there for 2 hours, didnt we get contacted by the sugical team? Nope! they left us sitting there for 2 hours worried sick. But the important thing is Everest was ok and the surgery went well. basically 2 weeks to the day after his 1st shunt was placed, he was back in the OR due to the shunt being "superficial" in a spot on the top of his head, and it was about to break through his skin. We made it well known that we were forgotten about in the waiting room last time, and we were not very happy! We had the surgeon meet us in the waiting room, who was very thorough in explaining everything to us this time! (same one that did his 1st shunt surgery). He recoverd very quickly from the 2nd shunt surgery, and was moved to the step down room as a feeder/grower. We were just learning how to eat from the bottle! Pretty much as soon as we got used to the idea of him coming home soon, he had a NEC scare. NEC is a GI issue that could cause him to lose part of his bowel due to the blood flow to a certain spot of the bowel being comprimised. So back out to the main floor we went. He was taken off feeds, put on IV fluids and antibiotics. They were taking X-rays of his belly every 6 hours to make sure things didint get worse. They were to place a PICC line, because he was going to have the antibiotics for 14 days and would need the IV for a bit longer than that. Well it took 3 tries to get one placed. After 2 days it went bad and they had to place a new one in the other arm. 2 days later that one went bad. So they had pediatric surgery come to do a "cut down" on his leg to get a better PICC placed. They made an incision in his inner thigh, and found a bigger vein and placed the PICC. That has lasted so far! They began to introduce feeds once again very very slowly!
He thrived after the NEC scare, and re-learned to eat! He was getting a voice and liked to be walked around the floor by a nurse. We were told on August8th that he will probably be coming home soon! so we prepared ourselves for that (and tried not to get too excited since we were shot down with that idea last time). His nursery was already set up and just needed to baby for it! So August 10th they did a bunch of final tests and we were scheduled to come home on the 11th. We were in there bright and early, but had to wait for a while to get paper work done and his exit evaluation done by the attending. We brought him home on August 11th around 3pm! He has been home for a little other a month now and doing fabulous! He started to sleep about 6 hours at night which is amazing! We still dont have a schedule down but thats ok. He was at the pediatric surgeon yesterday, and weighed 10lbs! what a big big boy! He was 7lbs when he was discharged. He had a follow up with the neurosurgeon and they are pleased with his shunt. He will have an MRI done here in the enxt few months to get a better look at his brain/ventricles. We have an early intervention evaluation for monday to see if he qualifies for some therapy. The physical therapist and occupational therapist that saw him in the NICU think he would benefit from getting therapy to help him develop "normally".
Now i will share some pictures throughout our journey so far!
Here are a few pictures to go along.
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