Wed. 11-16-05 (29 weeks along in pregnancy) Had a scheduled Non-Stress Test (NST) at my OBGYN's office today - doctors want to keep a close eye on Trevor's heart rate due to complications my Lupus could cause the pregnancy. I've been on Dexamethasone for most of the pregnancy to hopefully avoid any prematurity, congenital heart block, or neonatal Lupus. Trevor and I passed with flying colors within 15 min. Thurs 11-17-05 Had my regular scheduled appt with my OBGYN - all looks well. Sat 11-19-05 Had a scheduled NST at Mercy San Juan Hospital 1:00pm - stayed till 5:00pm and sent home to relax and drink lots of water. Trevor is very inactive with few erratic decreases in heart rate during a tightening sensation in my lower abdomen (not registering as a contraction) Had ultrasound done - he passed their tests except the AFI (amniotic fluid index) the fluid in the placenta registered as low. OBGYN wants another NST on Sunday and AFI on Monday. Sun 11-20-05 NST at Mercy San Juan Hospital at 1:00pm, I arrived with Barbara - Trevor again very inactive with some erratic decreases in heart rate during tightening sensation in my abdomen. Was admitted and set up with IV somewhere between 7-9:00pm. Erratic decreases in Trevor's heart rate continued to get more frequent. Barbara had gone home to get some rest and put her kids to bed since we are still under impression I am just being monitored. From about 10:00pm on Trevor's reacting worse - I was told at about 11:45pm that OBGYN was on her way in to see me to decide if monitoring or emergency c-section was the way to go. Called Seth at home to get to the hospital (he'd been home with Carson) I called Barbara and she went to our house to watch Carson through the night. Mon 11-21-05 (30 weeks along in pregnancy) OBGYN got to my hospital room at 12:15am told me that Trevor was not doing well and that they would have to do an emergency c-section. I was told they would wait for Seth for a few minutes - otherwise they would have to proceed without him. The nurses started preparing me for surgery and Seth arrived at about 12:25am. Trevor Fenn Pearce was delivered at 1:03am and weighed 3lbs 14oz. He is 10 weeks premature. NICU doctors immediately began evaluating Trevor and put him on a ventilator. I was only able to get a glimpse of him out of the corner of my eye before he was rushed to the NICU. Seth was able to stand up and look at him briefly and get a quick briefing from the doctor. By 1:45am I was in recovery. Aprox 8 hrs passed until I was able to see Trevor in the NICU. Thankfully the steroids I'd been taking throughout the pregnancy helped Trevor's lungs develop early so he was not having difficulty breathing any longer and had been removed from the ventilator prior to me seeing him. Later that day we were informed that Trevor was going to be transferred to UC Davis Children's Hospital when I got released. We were very frustrated to find out it is because of insurance issues. Tues 11-22-05 The doctors are concerned about Trevor not moving around very much. Going to run some tests. He's jaundice and placed on photo therapy. Placed on caffeine for apnea episodes. We've been asked for the medical history going back to our grandparents - they are hoping it will point them in the right direction regarding Trevor's condition. Wed 11-23-05 He's had a head scan done which showed minimal bleeding to the brain on the right side. We're told that UC Davis will rerun the head scan in aprox a week. Trevor's movements are now normal. Thurs 11-24-05 I was released today (Thanksgiving Day) and Trevor was transported to UC Davis Children's Hospital in downtown Sacramento. Seth and I arrived at UC Davis before Trevor and were there when he got settled in at 11:26am. Number of tests run at admittance. Main concern from the tests is his platelet count which is 56,000. We were told that low platelet levels could be a sign of bone marrow problems. That evening we recvd a phone call at home wanting authorization to perform a platelet transfusion on Trevor - his numbers were drastically low and required immediate attention. At 10:45pm Trevor received the platelet transfusion - his numbers had dropped to 24,000. Fri 11-25-05 5:30am platelet count up to 150,000 - they will recheck again tomorrow. We were told that if the platetes remained at an acceptable level then bone marrow problems would no longer be an issue. Seth and I finally got to hold Trevor for the first time! It was really scary though, all the wires and tubes made it difficult. Sat 11-26-05 6:00am platelet count recheck - results in at 9:00am - down to 111,000. Will be rerunning more platelet count tests either later today or tomorrow. Sun 11-27-05 Billy Ruben count at 7.5 Platelet count at 108,000 Back to birth weight Trevor's finally popped. Nurse's say he's fussy because he wants more food - he's being fed through a feeding tube through the nose called a gavage (sp?). Nurse is going to talk to doctors about increasing his feedings. Mon 11-28-05 Billy Ruben count at 7.0 (their looking for 5-6) Platelet count to be run tomorrow. Head scan preformed today - results in tomorrow. Blood pressure elevated - did ultrasound on kidneys - results in tomorrow Blood pressure at 90-100 / 70's - should be 70/50 or 60/50 ish. Running EKG tomorrow. Tues 11-29-05 Billy Ruben at 5.3 - stopped photo therapy recheck on 11-30 Platelet at 168,000 recheck on 12-2 Results from head scan in: left side temporal lobe grade 4 bleed (most serious) Intraventricular Hemorrhage (IVH). Possibly because of the low platelet count - bleed can be absorbed back - hematologist looking into it. Blood pressure came down but why was it up? Kidney ultrasound looks fine - kidney doctor coming in to check on Trevor. Doctors need to keep a close eye on Trevor - we're hoping he doesn't develop hydrocephalus - which is to much cerebral spinal fluid collecting in the brain. Spoke to kidney doctor (Dr Jackson) their checking electrolyte and kreatnin levels as well as potassium levels. Kreatnin levels were 1.0 on 11-28 down to .8 on 11-29. Their looking for .3 Believe this is caused by the lack of blood and oxygen to kidneys during delivery as well as prior. Trevor was given blood pressure meds (Haldrolozine) 11-28 - stays in system for 24 hrs and not to be given more then 2-3 times. If blood pressure remains elevated they will put him on something for long term use. Worst case regarding kidneys: dialysis or transplant. Doctor thinks this will work it's self out. By our 11:00pm visit Trevor's blood pressure was remaining in normal range. Wed 11-30-05 Billy Ruben count at 5.2 Waiting to talk to hematologist about head scan results. Feedings increased again - now at 24 ccs every 3 hrs. Possibly removing tube from belly button for the fatty acids since he's doing so well with the formula through the gavage. Blood pressure slightly elevated but still acceptable range. At am visit I was told two hematologists had seen Trevor and were running blood work on proteins C+S for blood clotting issues - couple of days to get results. DIC panel also being run. ** Not sure of the date but around the 30th is when Trevor was checked by the Ophthalmologist - the mechanics of his left eye is fully formed but his right eye is not - hoping that in time this will correct it's self. Thurs 12-1-05 Head scan done again today - waiting for results. No sign of hydrocephalus! Ran liver panel - waiting for results. Platelet count - rerun on 12-2 Billy Ruben count - he shows no more symptoms and will not rerun unless something changes. Temps been good & blood pressures been acceptable. Spoke with resident and they'll have more info for us tomorrow. - Feedings increased again! On caffeine for apnea - but he's had no episodes since at Mercy San Juan Hospital. Fri 12-2-05 Feedings increased again Platelet count at 349,000 Moved from incubator to a crib Waiting for other results to come in Last line removed out of belly button late last night. OVC line out! Blood pressure good. Only lines left are for feeding tube and to monitor blood pressure, heart rate and blood oxygen levels. Head scan results in: no change - hematologist thinks this was cause by a combination of low platelets and lack of blood and oxygen in placenta. Proteins C+S ok, DIC ok, and liver looks to be healing itself. PM visit - Trevor's back in incubator - his temps to low. He's able to maintain his temp without the incubator being heated so that's a good sign at least. They'll try the crib again soon. Feedings increased again - having to work on timing of feeds because he's been spitting up some - they want him to not spit up at all. Sat 12-3-05 Today Trevor's in an open incubator - temp better & remaining at current level of formula - increasing his calorie level though. Will rerun head scan on Thursday. Rerunning kidney ultrasound on Thursday & liver function as well. Rerunning platelets on Monday & doing more kidney blood work. Sun 12-4-05 Quiet weekend for Trevor - still in incubator but with no extra heat. Has not spit up today. Weight is at 4lbs 2oz. Quick afternoon visit - I went back at night while Seth was home with Carson doing bedtime. Busy week ahead with lots of tests. Mon 12-5-05 Seth back to work today. Platelets at 503,000 Waiting on addl test results. Kidney ultrasound not done as of 12:15. Temp still looks good. Had a nice nighttime visit - he looks good. Tues 12-6-05 Feedings increased again. Stopped caffeine for apnea Billy Ruben down to 2.1 Wed 12-7-05 Weight was 4lbs 4oz last night - he looks good and is feeding really well. They have had to set incubator heating to lowest level - little bit of trouble with his temp. Thurs 12-8-05 Weight at 4lbs 7oz Only spit up once today when I was visiting - probably from me moving him around to much. Had head scan and kidney ultrasound done this morning and we're just waiting for results. Fri 12-9-05 Had a quick visit at Carson's naptime - Trevor looks great and very alert. Still waiting on test results. Sat 12-10-05 Walked in on Trevor having a BATH! Na-nake boy!! Quick visit at naptime - Seth and Carson are sick so I didn't hold Trevor. Weight at 4lbs 9oz Head scan results in: no new bleed and it's healing nicely. Kidney ultrasound back - some little scarring - kidney doctor will look at it but they suspect no damage and they think it's healing itself. * Told Trevor is just now sleeping, eating, and growing till he goes HOME! Will do MRI prior to discharge - hopefully we'll get a better idea of what areas the bleed is affecting. Sun 12-11-05 All three of us at home are sick with colds so we don't want to take any chances of spreading it to Trevor. He's been moved into a crib! Had a few episodes of apnea again…Heart rate has dropped briefly a couple of times as well but they are monitoring him and aren't to concerned about it since it's really normal in a premature baby - it's called a bradecardea (sp?) Mon 12-12-05 Still in a crib! Haven't seen Trevor since Saturday - hopefully I'll be better tomorrow or else Barbara will go and visit him. Tues 12-13-05 Barbara is going to visit before her doctor s appt. I had a good phone call with the nurse. Weight is 4 lbs 13oz Trying the bottle today! No more apnea. No more bradecardea. Still in crib! It's nice to finally have some time where it's nothing but positive! Just wish I could be there to see him and hold him. Wed 12-14-05 I went at late morning to see Trevor - he looks great! Bottle didn't go well this morning - they'll keep trying once a day though. Weight is 4 lbs 15.7 oz! Thurs 12-15-05 Bottle went great this morning and this evening! Weight is 5lbs 1 oz He's maintaining his temperature. Fri 12-16-05 Working on two bottles a day. Weight is 5lbs 3oz Sat 12-17-05 Weight is 5lbs 4.3oz. He's doing great! MRI planned for 12-22 - is that the MRI prior to discharge???? Fenn Family Christmas celebration is today - feels strange to celebrate anything with Trevor not home with us. Sun 12-18-05 Weight is 5lbs 4.8oz All feedings by the bottle now - if he doesn't finish it all within a certain amount of time then they finish it for him by gavage feeding… Mon 12-19-05 Weight is 5lbs 6oz! Got to bottle feed Trevor this evening! He didn't really want much but the nurse said that was ok. Watched 2 out of the 3 videos we are required to watch prior to discharge. And got a lot of info about the actual discharge process. A nurse from this morning told me on the phone when I called to check in on Trevor that "The doctors from rounds this morning told me to inform the parents that Trevor may be discharged the end of this week" !!!!!!!! Tues 12-20-05 Weight 5lbs 6oz Doing great on the bottle Wed 12-21-05 Feeding tube is GONE!! Gave Trevor a bottle this afternoon. Watched 3rd video required - CPR Thurs 12-22-05 Didn't have the MRI as planned. Rescheduling for some reason. Fri 12-23-05 Weight 5lbs 9.2oz! Gave him bottle, changed diaper, and took temp - feels good to be doing mommy chores - nice long nighttime visit. Sat 12-24-05 Heard Trevor won't be coming home till after his MRI on Tuesday - we'd been going back and forth on the phone with the nurses trying to figure out what was going on - was he coming home this week or not??? Sun 12-25-06 Carson got to finally meet Trevor for the first time this morning!!! What a perfect Christmas present. Mon 12-26-05 MRI tomorrow. Circumcision done today. Trevor recvd his first dose of Synergis for preventing RSV. Weight is 5lbs 12oz Tues 12-27-05 MRI scheduled for 12:00 Got the phone call it was done and Trevor's recouping fine - it's sad that he had to be put under for it. Wed 12-28-05 Passed his carseat test Some results from the MRI in - most damaged area from the brain bleed (IVH) is vision, 2nd area is hearing, and 3rd is motor skills. Still a good chance of no disability - just have to wait and see. Motor skills issues would be some level of cerebral palsy. RELEASED TODAY!!!!!!!!!!!!!!!! Mon 1-2-06 8:30am Trevor's first check up with pediatrician - wants to see him back in one week. Trevor looks great - reminds us that we just have to wait and see what damage the IVH did to Trevor's brain. Also told to keep ALL ill people away from Trevor as he is VERY prone to RSV. He sounds a little conjested - told to keep a close eye on his breathing. Mon 1-9-06 3:20pm Trevor's check up with pediatrician - just wants to make sure his feeding is going well - wants to keep close eye on Trevor since premature babies can turn around and all the sudden and get ill. Thurs 1-12-06 Appointment with opthomologist - Trevor had to get his eyes dialated (used some medival looking tools) We were told that Trevor's right eye was now fully formed and that the mechanics of both eyes looked good. Set up appointment to see a pediatric opthomologist specialist - since the vision area was the most affected by the brain hemorage. Wed 1-18-06 11:00am Trevor got his first set of shots from the pediatrician - he's just over 8 wks old. Weight is 7lbs 3.2oz. Tues 1-31-06 3:40pm Weight check up with pediatrician - 8lbs 5.8oz Thurs 2-2-06 Trevor's 2nd Synergis shot for preventing RSV. Weight of 8lbs 6.8oz Fri 2-10-06 Trevor's conjestion's gotten considereably worse - took him in to see pediatrician. Did testing for RSV - will call us with results. Sun 2-12-06 Trevor's been a little under the weather today. Stool color is a VERY dark green. Mon 2-13-06 Results in for RSV - Negative. Trevor still isn't feeling well - now has a temperature of 99.6 under his arm - called the doctor and since it's after hours they want him seen at the emergency room. Isn't able to keep down more then 2oz of formula at a time - normally drinks 4oz with not problem. Temp of 100.2 at the hospital - kept for observation for a few hours. Spent a total of 5 hrs at the hospital, temps down and he's now eating. Sent home and told to see our pediatrician the next day. Tues 2-14-06 Checked in with pediatrician - Trevor looks fine, temps good and he's eating better. Were told to just keep an eye on him and told to contact doctor if anything changed. Stools still dark green. Aren't concerned about it unless they are bloody or black. Tues 2-28-06 Check up at pediatrician's office. Doctor says he's never had a premature baby gain so much weight in so little time! 11 lbs he's at now Thurs 3-2-06 Trevor's 3rd Synergis shot for preventing RSV. Fri 3-24-06 Trevor's 4 month old well baby check up - got his vaccinations. Weight is 13lbs and he's 23" long. Pediatrician wants to start talking about starting Trevor on solid foods next month possibly. Thurs 3-29-06 Trevor rolled onto his side today - not really smiling yet though... Thurs 3-30-06 Trevor's 4th Synergis shot for preventing RSV. Weight is 13lbs 6oz. Wed 4-5-06 Got a full blown smile from Trevor today - giggle and all!!!!!!! Finally!! Thurs 4-6-06 Pediatric Opthomologist appointment: So far so good - eyesight is looking normal - just have to wait and see if there are any blind spots that develope and how his visual recognition is. Dr O'Hara wants to see Trevor back in 3 months - hopefully she'll have more information for us then. Week of 4-9-06 Trevor has had a very exciting week: He had his first time in a doorway jumper and an exersaucer and he loves them both! The biggy - he's now opening his hands and trying to grab things! Thurs 4-27-06 Pediatrician appointment - Trevor's not ready for cereals yet, we'll look into it at his 6 month appointment. Trevor's 5th Synergis shot for preventing RSV. His weight is 15 lbs. Tues 5-2-06 Audiology appointment - hearing test - NORMAL HEARING! Everything looks good so far - they'll recheck in 6 months to be sure. Had some confusing conversation with the audiologist though - she shows nothing being noted in the final results from the MRI regarding hearing. It only mentions fluid in the mastoid bone behind both Trevor's ears. I found out today the referral for the neurologist was never done. I got a copy of the final results from the MRI from Trevor's pediatrician and it definitely looks different from the preliminary results I was given back at Trevor's discharge! So the referral is being worked on and I have to wait to talk to the neurologist to get info on the MRI results. Mon 5-8-06 Trevor's become very verbal ~ loves expressing himself. And he can't seem to get enough of his thumb - doesn't matter which one as long as one is in his mouth! Fri 5-26-06 Trevor's 6 month old well baby check up. He's smiling like crazy now! Almost rolling over! Started him on cereals. Loves his thumbs, I think he's teething! Reaches out and grabs my face with both hands! Weight is 16 lbs 11 oz - he's completely off the premature infant chart - doctor is having to plot his growth on a normal growth chart by his actual birth date rather then his gestational age - he's in the 25%! Told to keep giving Trevor the special preimee formula but I can stop waking him up at night to feed. Had vaccinations - definitely didn't like that. So far no sign on cerebal palsy yet. This is when his prematurity is really starting to be noticeable - he's the size of a 6 month old (which is great) looks like a 4 month old, and he has the functions of a 4 month old. Got some clarification from the doctor about the mix up with the MRI results - he states that no one other then a neurologist can clearly explain the results of the MRI - that what I was told from the preliminary results is correct. He explained that what is actually in question regarding Trevor's eyesight and hearing is not the ears and eyes themselves, but how the brain interprets what information it's getting. Does he see the color red or does it look blue to him? Does he see things upside down or right side up? Is his brain creating blind spots or tunnel vision? Does he understand if he's seen something before or if it's new to him? Does he hear low sounds as low or high? A lot of important appointments coming up in June - hopefully we'll be given more of an idea of the severity of his handicaps (if any). Have to keep a realistic but positive mind. Sat 6-3-06 Trev rolled over (back to front) for the first time today! He's been talking more and more - it's the cutest thing! Thurs 6-8-06 Nephrologist's appointment (kidney specialist) - Dr Jackson says that Trevor looks great, very impressed with his weight. (17 lbs 2 oz) Blood pressure issues are resolved. Because of original test results on kidneys the doctor wants to rerun all blood work and kidney ultrasound to completely determine if he is in the free and clear. Took care of blood work today and we waiting on scheduling of ultrasound. Dr Jackson was clear in saying that just because Trevor looks great and I was answering all the questions the way they were hoping to hear he could still be facing worse case of dialisis or kidney transplant. Aprox one week later Got a phone call from Dr Jackson (kidney specialist) - she says that Trevor's blood work came back even better then she was hoping for! No need for the ultrasound now and he doesn't have to see her again! Tues 6-20-06 Audiology appointment - ABP (sp?) Hearing test - test went well, the audiologist says that Trevor's brain is receiving sounds from the ear drums normally but that there is no way of knowing yet how his brain is interpreting the sounds. Does he here actual words and sounds or is it all slurred? We're supposed to keep a close eye on his baby talk to make sure it's progressing. She is hopefull that he will hear normally but that there is still a possibility that his brain won't interpret the sounds correctly. Thurs 6-22-06 Neurologist appointment: The appointment went great - couldn't of gone any better I'd have to say! Weight is 17lbs 15.5 oz Turns out the diagnosis we were given at the hospital of a Grade 4 Intraventricular Hemorage was an overstatement by the attending resident at that time. The neurologist explained to us (even gave us a copy of his notes) that Trevor had a Grade 1 Intraventicular Hemorage with a minute Grade 4 (special circumstances as he called it). He said that Trevor looked great and was doing things that he hadn't expected him to be able to do yet. He was impressed that Trevor did not have the physical features that premees typically have. No future appointments with the neurologist are necessary unless he does not progress with his skills. The docotor stated that the vision and hearing concerns are such a slight chance that we don't need to be worried about them. Our concerns now are only the issues of prematurity - possible CP, delayes in learning, slight chance of siezers, and weak immune system. Month of July Eating real baby food now - he loves sweet potatos, carrots and all the fruits you let him have. Discovered his feet this month! 7/22 - Trevor gets up on all fours now and rocks slightly back and forth ~ crawling here we come! 7/29 - 1st tooth broke through today - lower right front |
| Future Appointments |
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8-22-06 Trevor's 9 month old well baby check up 8-30-06 Pediatric Opthalmology Specialist appointment - vision recheck 9-7-06 Baby Steps program at Mind Institute - Trevor's evaluation 11-06 Audiology appointment - hearing recheck |
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