Lots of appointments this week! On Monday, we took Cayden in for his 6-month vaccinations. Poor little bubba! He squealed and cried when they stuck him (twice at once, then once more) but within maybe thirty seconds, he slowed to a whimper then stopped altogether. I think I cried longer than he did! They also did a weight check on him while we were there: he was 11 lbs. 8.8 oz.
[Side note regarding Jamison: we took him with us to see the doctor at the same time we took Cayden because he is still coughing and snotty. I thought maybe he had another ear infection and with all these times he's been sick over the past eight months, we just wanted to be sure. She thinks he may have asthma and/or allergies to something (seasonal? cats?) Although that's not what we want to hear and have to deal with, we're hopeful that maybe once we start treating him, he will finally feel better. So we stopped by the drug store on the way home so we could give some more money to the pharmaceutical companies and came home with two inhalers and a nasal spray.]
On Sunday evening, a friend and former co-worker of mine who currently has twins in the NICU alerted me about a warning the FDA had just issued about Simply Thick (the thickening agent we're using with Cayden's milk.) The FDA has received reports of fifteen cases, two of which ended in death, of necrotizing enterocolitis (a condition where intestinal tissue becomes inflamed and dies) linked to preemies who were being given Simply Thick. The warning says to immediately stop giving Simply Thick to infants born before 37 weeks gestation. (For anyone who may want to read the warning for themselves, go to the article here.) So while we were at the doctor's, we asked what we should do. She wants us to stop using the Simply Thick ASAP. Problem is, we were told at the NICU that weaning from Simply Thick should be a slow, gradual, closely-monitored process. Our pediatrician doesn't think it's worth the risk of weaning him slowly - she wants him off it right away. So as of Monday, we cut back to half-strength and if he continues to seem to tolerate the change, we'll drop down to 1/4-strength. I'll check in with the doc on Friday and if he's doing well, we'll probably be off of it completely by the weekend. It's terrifying to think he's been on this for the past four months or so and what could/could have happened. The warning is a bit vague and open for interpretation, so it's hard to know for sure how much risk he's been at all this time and possibly in the future.
As if that wasn't enough excitement for one day, we rushed home from the doctor's office, dropped Jamison off at daycare, rushed home, then Jason left for St. Louis while I met with our care team (our Developmental Pathways coordinator, Vicki, our home health nurse, Alison, our occupational therapist, Amy, and our physical therapist, Liz) where we reviewed and revised Cayden's service plan goals. It was great having everyone together and I really feel like things are on a good path for him to reach his full developmental potential. These ladies all care about Cayden and do so much work to help him. Amazingly, all of their services are provided at no cost to us through the county. We feel so lucky to have them!
Monday evening, I got some help and dinner delivered courtesy of my friend and former co-worker, Ashley. She brought us dinner and stayed for a few hours to help with the boys. I so appreciated it and was immensely grateful for the help, especially considering the rest of that night was really tough -- once again, I think the vaccines bothered Cayden enough to make him fussy and he didn't sleep much all night. I got a total of less than two hours of sleep. Add to that the change in the consistency of his milk (he didn't seem thrilled with the change and I had to watch closely to make sure he didn't choke and aspirate on the thinner liquid) and the fact that we also dropped back down to 24 kcal that day, and it was just a recipe for fussiness! I think he was achy, hungry, and possibly suffering from more reflux for a good 24-48 hours.
He seemed to improve throughout the day on Tuesday and by Tuesday night at 11, I couldn't even wake him up to give him one last bottle. He slept from about 9 p.m. until 8:30 the next morning! Jamison woke me up at 7:15 this morning and I raced into Cayden's room in a panic thinking something must surely be wrong for him to sleep that long, but when I went in his room, I found him sound asleep (and still breathing!)
Today was his surgery follow-up appointment. Dr. Bruney checked him out and declared him all better! He still had steri-strips on one of the incisions, so she pulled them off to make sure it had healed. The scars are barely noticeable. She said there is only a 1% chance of the hernias recurring later in life, which I think she said is about what the risk is in the general population. So that's one more preemie hurdle behind us.
He seems to be over his fussiness today and is feeding well. I gave him a bottle around 6:30 this evening, held him for a half hour then put him in his bouncy where he fell asleep while I fed Jamison dinner, gave him a bath, put him to bed, pumped, and started typing this entry. It's now almost 10 p.m. and Cayden is still sound asleep! Think I'd better go check on him again and try to get one last bottle in him before I put him down in his crib for the night. Here's hoping for a good night's sleep for everyone in this house!
Tiny hand
November 20, 2010 (one day old)
Lilypie Premature Baby tickers
Wednesday, May 25, 2011
Saturday, May 21, 2011
Six month bummer
Cayden was six months old as of yesterday but will be on oxygen for at least awhile longer. The doctor finally called this evening after reviewing the results of his overnight room air challenge from Wednesday night. According to her calculations from the data provided from the oxygen company's monitor, Cayden spent about 25% of the time he was being monitored below the threshold of 87%. I was surprised it was that much - I know the thing alarmed a lot the first hour or so, but I was also fiddling with the lead, trying to get it securely attached to his little foot. I tried explaining that to the nurse who called to give me the decision, but since I didn't keep a minute by minute record of every little thing he did during those hours, she couldn't just write it off. It went off half a dozen or so times throughout the night while I was sleeping, but never long enough for me to get up out of bed to make sure he was o.k. - his saturation always came back up on its own.
The doc said we can take him off during the day when he's awake and just put him on the oxygen while he's sleeping or napping, but honestly, taking the cannula off and on that often is too much of a hassle, and we can't just leave it in his nose because it blocks his nasal airflow without providing any extra oxygen and it also gets condensation in it if there's no air flowing, which can lead to bacterial growth. So for as much of a pain as it is to drag the 50-foot cord around all of the time, I think it's easier than dealing with taking the cannula off and putting it back on multiple times a day. I am really bummed about it and I'm sure Cayden's not too thrilled about still having that thing in his nose all the time. I guess we'll try again in a month or so and see how he does.
In other news, we had another visit from Alison, our home health nurse, today. She weighed him and he is now 11 lbs. 5 oz. which is still right at the 25th percentile. He is also still right on track with his developmental milestones. She pointed out that she thinks he's going to have a dimple in his chin and cheeks. Nonna Lena said the same thing about his cheeks, so we'll see!
The doc said we can take him off during the day when he's awake and just put him on the oxygen while he's sleeping or napping, but honestly, taking the cannula off and on that often is too much of a hassle, and we can't just leave it in his nose because it blocks his nasal airflow without providing any extra oxygen and it also gets condensation in it if there's no air flowing, which can lead to bacterial growth. So for as much of a pain as it is to drag the 50-foot cord around all of the time, I think it's easier than dealing with taking the cannula off and putting it back on multiple times a day. I am really bummed about it and I'm sure Cayden's not too thrilled about still having that thing in his nose all the time. I guess we'll try again in a month or so and see how he does.
In other news, we had another visit from Alison, our home health nurse, today. She weighed him and he is now 11 lbs. 5 oz. which is still right at the 25th percentile. He is also still right on track with his developmental milestones. She pointed out that she thinks he's going to have a dimple in his chin and cheeks. Nonna Lena said the same thing about his cheeks, so we'll see!
Monday, May 16, 2011
Healing well
I guess it's good that I don't have a lot to say here lately. Cayden has been healing well since his surgery. I can't believe it was a week ago! The days just fly by, especially when Jason is gone. As for Cayden, he seems to be back up to full speed as far as eating and sleeping. He still has steri-strips over the incision sites for his hernia repairs, but those should come off on their own in the next week or so. The edges are already starting to peel up. His circumcision is healing nicely as well. Through all of this, he never seemed to have very much pain, which I am eternally grateful for!
We've had him off of his oxygen during the day since he's been home and only hook him up at night. We will be getting the pulse-ox machine on Wednesday to do the overnight room air challenge on Wednesday night. The oxygen company will come back the next day to pick up the machine and download the data collected from the study to send to our pediatrician, then she'll notify us of the final results.
Other than that, we've just been trying to keep Cayden healthy, which has been a logistical challenge seeing as how Jamison is sick yet again. So far, Cayden has been o.k. although he seems to be a little snuffley lately. I think it's just another episode of reflux, though.
We've had him off of his oxygen during the day since he's been home and only hook him up at night. We will be getting the pulse-ox machine on Wednesday to do the overnight room air challenge on Wednesday night. The oxygen company will come back the next day to pick up the machine and download the data collected from the study to send to our pediatrician, then she'll notify us of the final results.
Other than that, we've just been trying to keep Cayden healthy, which has been a logistical challenge seeing as how Jamison is sick yet again. So far, Cayden has been o.k. although he seems to be a little snuffley lately. I think it's just another episode of reflux, though.
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Cayden smiling at his big brother |
Wednesday, May 11, 2011
Home again
We came home from the hospital yesterday evening and things have been going well. Cayden doesn't seem to be in too much pain, at least not more than a dose of plain old Tylenol can't remedy. He's sleeping, eating, peeing, pooping, and smiling, so I'd say all systems are functioning!
We stayed at the hospital a little longer than I originally wanted to so we could try to collect data for a room air challenge while they had him hooked up to a pulse-ox monitor. He was taken off of his oxygen at 9:00 in the morning and stayed off until we left around 4 p.m. and he had no desats or issues whatsoever! They gathered data while he was eating, napping in his crib, cuddling on momma, and sitting and snoozing in his car seat. The only thing they didn't cover was a period of time at night while he was in a deep sleep in a crib. So for now, we got the o.k. to take him off of his oxygen during the daytime while he's awake, which is awesome! Our pediatrician is setting up a time next week to have a pulse-ox monitor delivered to our home so we can do the night time portion of the challenge. If he passes that, we can get rid of the oxygen altogether. Based on how well he did at the hospital, I'm sure he'll do great and I can't wait to kiss this big tank and stupid 50-foot cord goodbye!
Cayden will take it easy the rest of this week - no physical or occupational therapy appointments until next week. We have a follow up appointment scheduled with the surgeon in two weeks, so she'll check him out and hopefully this bump in the road will be over with.
We stayed at the hospital a little longer than I originally wanted to so we could try to collect data for a room air challenge while they had him hooked up to a pulse-ox monitor. He was taken off of his oxygen at 9:00 in the morning and stayed off until we left around 4 p.m. and he had no desats or issues whatsoever! They gathered data while he was eating, napping in his crib, cuddling on momma, and sitting and snoozing in his car seat. The only thing they didn't cover was a period of time at night while he was in a deep sleep in a crib. So for now, we got the o.k. to take him off of his oxygen during the daytime while he's awake, which is awesome! Our pediatrician is setting up a time next week to have a pulse-ox monitor delivered to our home so we can do the night time portion of the challenge. If he passes that, we can get rid of the oxygen altogether. Based on how well he did at the hospital, I'm sure he'll do great and I can't wait to kiss this big tank and stupid 50-foot cord goodbye!
Cayden will take it easy the rest of this week - no physical or occupational therapy appointments until next week. We have a follow up appointment scheduled with the surgeon in two weeks, so she'll check him out and hopefully this bump in the road will be over with.
Monday, May 9, 2011
Surgery success
I only have time for a super-quick update as I am at the hospital. This is the first moment I have been able to put Cayden down, but I'm pretty sure he's going to be waking up any minute to eat one last time before bed and I need to mix up his milk.
The surgery went well. The anesthesiologist was able to do a spinal and epidural, so we avoided having to put him through general anesthesia. Dr. Bruney repaired the inguinal hernia on his right side and when she took a peek at the left side, determined it was herniated enough to warrant repairing. She also did his circumcision, all without incident.
Things have been quite stressful and disorganized since we've arrived in the patient room. I don't have time to comment on all of the problems, but suffice it to say that I am extremely disappointed in Children's Hospital. No hot water in the room, didn't have the proper oxygen regulator for Cayden's settings, a towel rack that crashed to the ground when I placed a dry washcloth on it, unable to get his meds until 10 hours after we arrived, nothing for Cayden to wear, no fridge or bottle warmer in the room . . . this would be so much easier if we could just go home. Hopefully we'll be to get some sleep here soon and will be able to get out of here in 12 hours or less!
The surgery went well. The anesthesiologist was able to do a spinal and epidural, so we avoided having to put him through general anesthesia. Dr. Bruney repaired the inguinal hernia on his right side and when she took a peek at the left side, determined it was herniated enough to warrant repairing. She also did his circumcision, all without incident.
Things have been quite stressful and disorganized since we've arrived in the patient room. I don't have time to comment on all of the problems, but suffice it to say that I am extremely disappointed in Children's Hospital. No hot water in the room, didn't have the proper oxygen regulator for Cayden's settings, a towel rack that crashed to the ground when I placed a dry washcloth on it, unable to get his meds until 10 hours after we arrived, nothing for Cayden to wear, no fridge or bottle warmer in the room . . . this would be so much easier if we could just go home. Hopefully we'll be to get some sleep here soon and will be able to get out of here in 12 hours or less!
Saturday, May 7, 2011
Six month check-up
It’s been a long week – Jason has been gone since Monday, so I haven’t had even a moment to update things, and now, to make it even more difficult, we’re having issues with our wireless router, so I can’t access the internet on my laptop!
We had lots of good news at Cayden’s 6-month well-child checkup on Monday. He put on a few more ounces and weighed in at 10 lbs. 5 oz. which puts him right at the 25th percentile, quite an increase from the 10th percentile he’s been stuck at. Dr. Stanford was so pleased with his weight gain that she gave the go-ahead to drop him down from 26 to 24 kcal supplementation. Plain breast milk (straight from the tap, so to speak), is about 20 kcal, so the next step down will be to 22 kcal and then the next time we drop, it will be to plain breast milk. He still needs the Simply Thick to help with his reflux, so I’ll still have to pump, thicken, mix, and then feed him from a bottle, but at least we won’t have to buy formula anymore.
In response to his steady weight gain, the other huge, exciting step that we are now allowed to take is letting Cayden feed at-will during the night. Instead of making sure to wake him up every four hours, we can let him sleep as long as we wants. The idea is that he should be able to take in enough calories during the day to be able to sustain himself for a longer period overnight. We just have to make sure we stay on top of feeding him every three hours or so during the day so he does get enough. That first night, Monday, he went almost six hours between feedings. Tuesday night, he went almost eight hours, then Wednesday and Thursday, he went over NINE hours! I was kind of freaked out that it was too long, but when I did the math and added up the total amount he took in over the 24 hour period, it came out to right in the ballpark of what he was taking in before. And I am in HEAVEN getting to sleep four or five hours in a row! (I still have to pump once in between there somewhere, but I’m trying to do it right before going to be at or so and then sleeping ‘til he wakes up at 5 or 6.)
The doc was also happy to see how well he’s doing overall, developmentally. He is right on track for his adjusted age of about two months. She is going to ask the docs at Children’s Hospital to do a room air challenge while he’s there for his hernia repair surgery this Monday. If he passes, he should be able to come home without oxygen! That will be a huge milestone! At the very least, we’re hoping that maybe he can cut back to only having to be hooked up at night while he sleeps. Let me tell you, we are ALL looking forward to not tripping over/dragging around/yanking when it gets stuck/tangling up in that stupid 50 foot cord anymore!
Cayden had another session of occupational therapy with Amy on Wednesday. Unfortunately, the timing worked out that he was due to eat right during his appointment hour, so he was hungry and not very happy about having to “exercise”. The good news is that because she is an occupational therapist, part of her job is to assess his feeding skills. She did some exercises with him then fed him a bottle and was quite impressed with his suck/swallow ability.
On Friday, we had our first meeting with the physical therapist, Liz. I really liked her as well and she did a great job working with Cayden. A lot of what’s done for physical therapy at this stage of development overlaps with occupational therapy exercises, so it was a lot of the same: tracking with his eyes and head, lifting/turning his head during tummy time, holding his hands in midline. As everyone seems to be, Liz was also impressed with his abilities and progress since we met with her supervisor just a couple of weeks ago.
Now the big focus is on Cayden’s hernia repair surgery on Monday morning. I can’t believe it’s almost here. It seemed so far off when I scheduled the appointment two months ago. It’s starting to sink in what’s about to happen and I feel flutters of anxiety and panic if I let myself think about what he’s about to face. Hopefully it will all go smoothly and he won’t suffer too much. I will try to give an update from the hospital when possible.
Saturday, April 30, 2011
Sack o' potatoes
Cayden has broken the 10 pound mark! As of yesterday, he weighed 10 lbs. 3.5 oz. Seems he is finally starting to pack on the weight. The home health nurse who came to check on him yesterday said he is at about the 25th percentile in weight which is a significant jump from the 10th or so percentile he's been hovering around up until now. That is what we want to see! She also did a developmental assessment called an ASQ (Ages and Stages Questionnaire) for 2 months, his "adjusted" age. Surprisingly, he is way ahead of schedule on gross motor development. He is also right on track for fine motor and personal/social development. For communication and problem solving, he is at the upper end of the "provide learning activities and monitor" region, which is absolutely fine.
We also had our first session with the new and much improved occupational therapist, Amy. She spent about an hour down on the floor with him, working on his three main exercises: tracking with his eyes and head, bringing his hands to his midline, and holding his head up during tummy time. He did well and got quite a workout. She even commented that he was "showing off" a time or two! Now it's our job to work on these exercises every day until we see Amy again next week.
My favorite development over the past couple of days is that Cayden has started cooing. He really responds and engages when you get up close and talk to him. It just melts my heart!
Jason just got his schedule for the month of May and it doesn't look good: he only has 10 days off all month (he was told he would always have 12-14), and his trips are all four and a half or five days gone with a day and a half or two off in between. He is not looking forward to it and neither am I. The only exception is a stretch of four days off during the time of Cayden's hernia repair surgery (May 9th.)
On Monday, Cayden has his 6-month well-child check up, so we'll see what the pediatrician has to say. Our big hope is that we'll be able to get a monitor to do a room air challenge to see if maybe he can come off of his oxygen.
We also had our first session with the new and much improved occupational therapist, Amy. She spent about an hour down on the floor with him, working on his three main exercises: tracking with his eyes and head, bringing his hands to his midline, and holding his head up during tummy time. He did well and got quite a workout. She even commented that he was "showing off" a time or two! Now it's our job to work on these exercises every day until we see Amy again next week.
My favorite development over the past couple of days is that Cayden has started cooing. He really responds and engages when you get up close and talk to him. It just melts my heart!
Jason just got his schedule for the month of May and it doesn't look good: he only has 10 days off all month (he was told he would always have 12-14), and his trips are all four and a half or five days gone with a day and a half or two off in between. He is not looking forward to it and neither am I. The only exception is a stretch of four days off during the time of Cayden's hernia repair surgery (May 9th.)
On Monday, Cayden has his 6-month well-child check up, so we'll see what the pediatrician has to say. Our big hope is that we'll be able to get a monitor to do a room air challenge to see if maybe he can come off of his oxygen.
Wednesday, April 27, 2011
Five months old today!
This was supposed to have been uploaded on April 19th but for some reason, it never got published!
Tuesday, April 26, 2011
What a difference!
Yesterday we met with two therapists from a new home care company and they were SO much better than the other lady we had for two weeks. The two women who came to our house yesterday were the supervisors of their respective departments: occupational and physical therapy. They come out initially to gather information and evaluate the patient, then assign a permanent therapist who will be working with Cayden in the weeks and months to come. Both of them were impressed with how well Cayden is doing. (Seems we keep hearing that from people and it's so reassuring!) They said they see the case history on paper and go to the first meeting with a mental image in their mind about how the patient will be, so they expected Cayden to be a lot worse off than he actually is. They examined him, worked with him, and talked to Jason and me about the plan for his care. We are really excited about moving forward with these new therapists!
In other news, I was going to try to do an update on Easter Sunday, but I didn't have a single second to spare, and the title wouldn't have been very nice: I was thinking of calling it "(Cr)Happy Easter". My grandma came down with what we think was a 24-hour stomach bug early Easter morning and she was completely miserable and out of commission all day. Jamison threw up during his nap and I thought for sure he had it too, but thankfully, it was an isolated incident, maybe related to the feta cheese I gave him at lunch that I don't think set very well in his stomach. Even the cat threw up a hairball that afternoon, which he doesn't do very often! Cayden and I were the only ones who escaped unscathed, but needless to say, we didn't have much of an Easter celebration that day.
Nonna Lena recovered just in time to hold Cayden one last time before going home Monday afternoon. Aside from not enjoying feeling so miserable, I think she was upset she missed out on her last full day of baby snuggle time. We sure enjoyed having her here to help us for a few weeks and we miss her already!
In other news, I was going to try to do an update on Easter Sunday, but I didn't have a single second to spare, and the title wouldn't have been very nice: I was thinking of calling it "(Cr)Happy Easter". My grandma came down with what we think was a 24-hour stomach bug early Easter morning and she was completely miserable and out of commission all day. Jamison threw up during his nap and I thought for sure he had it too, but thankfully, it was an isolated incident, maybe related to the feta cheese I gave him at lunch that I don't think set very well in his stomach. Even the cat threw up a hairball that afternoon, which he doesn't do very often! Cayden and I were the only ones who escaped unscathed, but needless to say, we didn't have much of an Easter celebration that day.
Nonna Lena recovered just in time to hold Cayden one last time before going home Monday afternoon. Aside from not enjoying feeling so miserable, I think she was upset she missed out on her last full day of baby snuggle time. We sure enjoyed having her here to help us for a few weeks and we miss her already!
Thursday, April 21, 2011
Catching up
Yikes! It's been over a week since I've updated things here.
First off, Cayden seems to have overcome whatever it was - aspiration, infection, cold - that plagued him all last week. He still sounds a little snuffly now and then, and we still retrieve some yellowish snoogies from his nose once or twice a day, but I think the worst of it has passed. Thank goodness! It took him most of the week to slowly get better. Progress was so slow, in fact, that we called the doctor every other day it seemed to see if she thought we needed to come back in so she could to check him out. Thankfully, Jason was home for a few days during the past week so he could pull out his stethoscope and take a listen whenever we were concerned, and we didn't have to return to the doctor.
Two side notes regarding Jamison that also compounded the stress of last week: he had a fairly severe allergic reaction after eating one of my grandma's cookies. We suspected walnuts and a blood draw confirmed it: he is allergic to walnuts. Besides that, he's been sick with colds and fevers twice in the past three weeks. He had his 18-month check up last week and that's when the doctor informed us he had an ear infection. So we've been treating him with antibiotics and he's finally starting to feel better.
On Monday this week, the occupational therapist came to the house again. Her first visit was last Monday, the day after Cayden came down with his 'episode'. I didn't get a good feeling from her that first visit, but I chalked it up to the circumstances and thought I'd see how things went this week. Well, it didn't take me long to figure out that I definitely don't like her. For one, she hasn't even touched him yet. How are you supposed to provide therapy without touching a patient? And the kicker was when she called him "Camden Inez". How rude! In addition, she kept talking about his g-tube (which he doesn't have, and never has had). After two weeks, she doesn't have a clue about him, his history, or even his name for crying out loud! She contradicts herself constantly and I'm always having to correct her. That doesn't give me any confidence in what she tells me to do, so I don't trust her. After she butchered his name, I was so annoyed, I just wanted her out of my house. As soon as she left, I called Vicki, our service coordinator, with the intention of asking for a new occupational therapist, despite the fact that it took us over a month to get this one. I had to leave a voice message and wasn't able to speak with her until Tuesday.
On Tuesday when I talked to Vicki, the first thing I asked was what should I expect from our occupational therapist. It crossed my mind that maybe I didn't fully understand what her scope of responsibilities is and sure enough, I was expecting too much out of her. What we figured out during that conversation was that Cayden also needs to be seen by a physical therapist, a speech therapist, and a nutritionist. So we set up a meeting for Wednesday to amend our service plan. The fact that our current occupational therapist didn't seem to be up to speed with Cayden (not Camden) and his situation was still unacceptable, so we decided to get rid of her and put in a request for someone new.
Vicki came to our house on Wednesday morning. It was the first time we met her in person and it was nice to finally be able to put a face with the person who is doing so much work on our behalf. We amended our service plan: Cayden will now be seeing an occupational therapist twice a month, a physical therapist twice a month, a nutritionist once a month, and a speech therapist as needed to monitor his reflux. Hopefully all of these people will be pinned down and confirmed soon so we can stay on track with meeting his developmental goals.
Wednesday afternoon, I had to go to the pediatrician's office to be trained on how to use the EpiPen we had to get for Jamison. I decided to take Cayden with me so we could weigh him. The little chunker weighs 9 lbs. 6.7 oz!
It's noticeable how much stronger he's getting. When we burp him, he fights us when we try to tip him forward. He puts all his weight on his legs and stands up straight rather than let us bend him forward. When I hold him on my shoulder and walk around the house, he holds his head up and looks around at things. He loves overhead lights! When he's lying on the changing table, he now turns his head to look at the jungle animal wallpaper border that's at his eye level. He seems captivated by them. He smiles a lot (and it's not just gas!) He seems so delighted when I look him in the eye and talk to him.
Last night after changing his diaper, I put him on his tummy on the floor for a bit of tummy time while I ran to the bathroom to wash my hands. When I came back 30 seconds later, he was on his back! I couldn't believe my eyes and exclaimed, "What the??! How did you get there??" I just couldn't believe he had rolled over on his own. So I laid him back on his tummy with his elbows propped up and dang if he didn't roll over right in front of my eyes! I guess you can say things with my little man are just rolling along!
First off, Cayden seems to have overcome whatever it was - aspiration, infection, cold - that plagued him all last week. He still sounds a little snuffly now and then, and we still retrieve some yellowish snoogies from his nose once or twice a day, but I think the worst of it has passed. Thank goodness! It took him most of the week to slowly get better. Progress was so slow, in fact, that we called the doctor every other day it seemed to see if she thought we needed to come back in so she could to check him out. Thankfully, Jason was home for a few days during the past week so he could pull out his stethoscope and take a listen whenever we were concerned, and we didn't have to return to the doctor.
Two side notes regarding Jamison that also compounded the stress of last week: he had a fairly severe allergic reaction after eating one of my grandma's cookies. We suspected walnuts and a blood draw confirmed it: he is allergic to walnuts. Besides that, he's been sick with colds and fevers twice in the past three weeks. He had his 18-month check up last week and that's when the doctor informed us he had an ear infection. So we've been treating him with antibiotics and he's finally starting to feel better.
On Monday this week, the occupational therapist came to the house again. Her first visit was last Monday, the day after Cayden came down with his 'episode'. I didn't get a good feeling from her that first visit, but I chalked it up to the circumstances and thought I'd see how things went this week. Well, it didn't take me long to figure out that I definitely don't like her. For one, she hasn't even touched him yet. How are you supposed to provide therapy without touching a patient? And the kicker was when she called him "Camden Inez". How rude! In addition, she kept talking about his g-tube (which he doesn't have, and never has had). After two weeks, she doesn't have a clue about him, his history, or even his name for crying out loud! She contradicts herself constantly and I'm always having to correct her. That doesn't give me any confidence in what she tells me to do, so I don't trust her. After she butchered his name, I was so annoyed, I just wanted her out of my house. As soon as she left, I called Vicki, our service coordinator, with the intention of asking for a new occupational therapist, despite the fact that it took us over a month to get this one. I had to leave a voice message and wasn't able to speak with her until Tuesday.
On Tuesday when I talked to Vicki, the first thing I asked was what should I expect from our occupational therapist. It crossed my mind that maybe I didn't fully understand what her scope of responsibilities is and sure enough, I was expecting too much out of her. What we figured out during that conversation was that Cayden also needs to be seen by a physical therapist, a speech therapist, and a nutritionist. So we set up a meeting for Wednesday to amend our service plan. The fact that our current occupational therapist didn't seem to be up to speed with Cayden (not Camden) and his situation was still unacceptable, so we decided to get rid of her and put in a request for someone new.
Vicki came to our house on Wednesday morning. It was the first time we met her in person and it was nice to finally be able to put a face with the person who is doing so much work on our behalf. We amended our service plan: Cayden will now be seeing an occupational therapist twice a month, a physical therapist twice a month, a nutritionist once a month, and a speech therapist as needed to monitor his reflux. Hopefully all of these people will be pinned down and confirmed soon so we can stay on track with meeting his developmental goals.
Wednesday afternoon, I had to go to the pediatrician's office to be trained on how to use the EpiPen we had to get for Jamison. I decided to take Cayden with me so we could weigh him. The little chunker weighs 9 lbs. 6.7 oz!
It's noticeable how much stronger he's getting. When we burp him, he fights us when we try to tip him forward. He puts all his weight on his legs and stands up straight rather than let us bend him forward. When I hold him on my shoulder and walk around the house, he holds his head up and looks around at things. He loves overhead lights! When he's lying on the changing table, he now turns his head to look at the jungle animal wallpaper border that's at his eye level. He seems captivated by them. He smiles a lot (and it's not just gas!) He seems so delighted when I look him in the eye and talk to him.
Last night after changing his diaper, I put him on his tummy on the floor for a bit of tummy time while I ran to the bathroom to wash my hands. When I came back 30 seconds later, he was on his back! I couldn't believe my eyes and exclaimed, "What the??! How did you get there??" I just couldn't believe he had rolled over on his own. So I laid him back on his tummy with his elbows propped up and dang if he didn't roll over right in front of my eyes! I guess you can say things with my little man are just rolling along!
Wednesday, April 13, 2011
New pictures
I've finally added a few recent pictures. There are two new ones on the right under "The latest pictures of me", and I added a couple in the previous entries "An extra pair of hands" and "Nonna Lena".
Oh, and one - make that two - for good measure . . .
Oh, and one - make that two - for good measure . . .
"I have a question!"
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| Cayden - about 5 weeks adjusted age (April 4, 2011) |
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| Jamison - about 7 weeks old (December 26, 2009) |
Trip to the ER avoided...for now (Part two)
My intention was to split that looooong last entry up into two parts and continue the story from Tuesday morning on, but I never got around to it yesterday.
Everyone slept well Monday night. Cayden, despite his intermittently noisy breathing, did just fine again. He slept for two good stretches of at least four hours each time and drank plenty of milk each time he woke. Dr. Stanford called to check on him Tuesday morning and we reported that he seemed about the same, maybe even slightly better on the intensity of his wheezing. She was encouraged to hear that and said the likelihood of all of this being a precursor to a cold was slim to none, and the chances of the chemical pneumonia (the irritation of his throat and vocal chords) developing into much more serious bacterial pneumonia were highly unlikely, as the critical window for both of these is the first 24 hours. If he didn't get worse in the first 24 hours, he probably wouldn't. So that was a HUGE relief!
She also said she had been discussing things with a pediatric gastroenterologist. When she told him the story, he replied, "Oh, yeah. Just a bad episode of reflux. No big deal. Wouldn't worry too much", like he sees it every day. Oh, wait. He probably does see it every day! So that was reassuring to hear from a specialist. We will likely need to follow up with him or another GI doc in the future to monitor his reflux. He can also guide us more precisely on how to wean Cayden off of the Simply Thick and Prevacid, so that will be helpful. He also mentioned the possibility of him having a hiatal hernia which may be worsening his reflux and that we may want to consider doing an upper GI scope at some point, but not any time soon.
It felt like a dark cloud had been lifted and the rest of Tuesday didn't seem so worrisome. Cayden was still coughing and wheezing, but we felt much better about his diagnosis. He ate well all day Tuesday and slept well Tuesday night.
One thing I forgot to mention about his first doctor visit on Monday was his weight at that time: 8 lbs. 12 oz.
Wednesday afternoon, we had our first visit from the home nurse from the Tri-County Health Department's Special Infants Project. She weighed and measured Cayden (his weight was up to 8 lbs. 14.5 oz) and assessed his developmental milestone achievements. Overall, she said he looks amazing and is doing phenomenally well given his start in life. I think she stopped just short of calling him a miracle baby, which in my mind, he is! We will see her another 10 or so times over the next year so she can closely monitor his growth and development. I am so happy to have this service! As much as we like our pediatrician, I just don't feel she is doing enough monitoring for a preemie. She seems to have more of the mindset to treat him like a 'normal' term baby, with visits spaced out every three months from here on out. Combining the services of this home health nurse, the occupational therapist, and our pediatrician gives us much fuller coverage and that makes me feel like we'll have the best chance of him developing to his full potential.
Everyone slept well Monday night. Cayden, despite his intermittently noisy breathing, did just fine again. He slept for two good stretches of at least four hours each time and drank plenty of milk each time he woke. Dr. Stanford called to check on him Tuesday morning and we reported that he seemed about the same, maybe even slightly better on the intensity of his wheezing. She was encouraged to hear that and said the likelihood of all of this being a precursor to a cold was slim to none, and the chances of the chemical pneumonia (the irritation of his throat and vocal chords) developing into much more serious bacterial pneumonia were highly unlikely, as the critical window for both of these is the first 24 hours. If he didn't get worse in the first 24 hours, he probably wouldn't. So that was a HUGE relief!
She also said she had been discussing things with a pediatric gastroenterologist. When she told him the story, he replied, "Oh, yeah. Just a bad episode of reflux. No big deal. Wouldn't worry too much", like he sees it every day. Oh, wait. He probably does see it every day! So that was reassuring to hear from a specialist. We will likely need to follow up with him or another GI doc in the future to monitor his reflux. He can also guide us more precisely on how to wean Cayden off of the Simply Thick and Prevacid, so that will be helpful. He also mentioned the possibility of him having a hiatal hernia which may be worsening his reflux and that we may want to consider doing an upper GI scope at some point, but not any time soon.
It felt like a dark cloud had been lifted and the rest of Tuesday didn't seem so worrisome. Cayden was still coughing and wheezing, but we felt much better about his diagnosis. He ate well all day Tuesday and slept well Tuesday night.
One thing I forgot to mention about his first doctor visit on Monday was his weight at that time: 8 lbs. 12 oz.
Wednesday afternoon, we had our first visit from the home nurse from the Tri-County Health Department's Special Infants Project. She weighed and measured Cayden (his weight was up to 8 lbs. 14.5 oz) and assessed his developmental milestone achievements. Overall, she said he looks amazing and is doing phenomenally well given his start in life. I think she stopped just short of calling him a miracle baby, which in my mind, he is! We will see her another 10 or so times over the next year so she can closely monitor his growth and development. I am so happy to have this service! As much as we like our pediatrician, I just don't feel she is doing enough monitoring for a preemie. She seems to have more of the mindset to treat him like a 'normal' term baby, with visits spaced out every three months from here on out. Combining the services of this home health nurse, the occupational therapist, and our pediatrician gives us much fuller coverage and that makes me feel like we'll have the best chance of him developing to his full potential.
Tuesday, April 12, 2011
Trip to the ER avoided...for now (Part one)
Something's been up with Cayden since Sunday afternoon. He took his biggest bottle ever and then while he was supposed to be being held upright for 30 minutes, he spit up quite a bit. Granted, he wasn't quite being held upright - he was more reclined on his back, so that may have exacerbated the problem. Throughout the afternoon and evening, he had a bit of a wheeze/rattle, but I attributed it to reflux. Sometimes that happens. But later that night, he started sounding worse, and my concern was raised because . . .
Jamison is sick yet again (I know I just posted that he got sick a little over a week ago, but I swear to God, he is sick AGAIN, with ANOTHER round of sneezing, runny nose, and 102+ fever as of Saturday.)
Cayden's wheezing got to the point where I called the doctor's office at Sunday night to see what I should do. He didn't have a fever or runny nose, both which would be signs of a cold rather than just a reaction to his reflux, so that was slightly reassuring. Plus, his appetite was still normal and he was sleeping OK despite the wheezing. The answering service paged the Children's Hospital triage nurse, and after giving her all the details of Cayden's situation, she said the case was out of her range of dealing with, and she had our pediatrician, Dr. Stanford, call me directly.
Dr. Stanford gathered the information and said I did the right thing by calling, but in the end, she didn't think he needed to be rushed to the ER. Her gut feeling was that the wheezing was related to his reflux. She said to keep an eye on him throughout the night and that if anything got worse - if his color changed, if he looked like he was struggling to breathe, if he wouldn't eat - I should take him to the ER. She also said if he was the same by morning, I should bring him into her office first thing.
Keep in mind the rest of our scenario: Jason is out of town. My grandma is staying with us, but Jamison is moaning, running a fever, and not sleeping very well, and I didn't want to leave him with her if I had to go to the ER. What a dilemma!
Amazingly, we made it through the night without Cayden getting worse. He actually slept and ate on a regular schedule, but I was awake most of the time, listening, checking on him, terrified he would turn blue.
After a month of waiting, we finally had our first visit weekly home visit from an occupational therapist at Monday morning. Cayden ate around and seemed to be breathing alright, so I didn't feel the need to cancel the therapy appointment to rush to the doctor's office first thing that morning. But as Murphy's law would have it, as soon as the therapist showed up, his breathing started sounding worse and worse. She was concerned that he was coming down with something and kept mentioning pneumonia, and that he didn't sound good. She gathered her initial information and briefly discussed some exercises I should be starting with to reach our goal of getting him to breast feed more, but we didn't actually do any of the exercises for fear of exacerbating the problem. She cut the session short and suggested I take him to the doctor right away.
So after getting Jamison (somewhat) settled with Grandma, I rushed out the door to Dr. Stanford's office. We spent over two hours there and left without any definite answers, but the doc was leaning more toward his symptoms being related to a bad episode of reflux rather than coming down with a cold. They monitored his oxygen saturation and heart rate the whole time we were there and it looked great. She listened to his breathing but couldn't make a clear determination of the source (upper airway vs. lower). Frustratingly, the wheezing and rattling noises came and went, and it seemed as soon as someone put a stethoscope on him, he would breathe normally. There was discussion of needing a chest x-ray. The nurses did a deep suctioning of his nasal passages to clear out any aspirate that was there. The doc consulted with a pulmonologist from Children's Hospital to get his advice. The pulmonologist said there is no consensus on how to treat or proceed with a case like Cayden's, but gave a couple options: a conservative route of prophalactically treating with a short course of steroids or a more aggressive route of hospital admission, chest x-ray, and observation for 24 hours or more. Given my situation at home, we decided to go with the less invasive choice. He got his first dose of steroids in the office, then the doc sent us home but told us to come back at the end of the day unless he made some sort of stellar improvement by then. She said she wanted to examine him again and then make the next decision about whether or not to send him on to the hospital.
In the hours we were at the doctor's, I tried getting a hold of Jason to let him know what was happening, but he had limited phone signal, so we were left trying to communicate by text. I asked if there was any way he could come home early (he wasn't scheduled to be home until Tuesday night). He said he'd see what he could do, but in the meantime, we were both scrambling to reach out to friends we thought might be able to help Gramma take care of Jamison in case he couldn't make it back and I had to take Cayden to the hospital. There were so many loose ends, so many unknowns, so much anxiety and worry and stress!
Around , we headed home. Thankfully, Gramma had managed o.k. with Jamison, so that was a relief. I was deliriously exhausted, but there was no time for sleep. The few hours we were home flew by, and before I knew it, it was time to go back to the doctor. (There was no 'stellar' improvement on Cayden's part in that short time, and I was concerned because he seemed to be coughing more. Not just his typical 'reflux' cough, but a more drawn out, whistling/wheezing, sort of croupy sounding cough.)
So I left Jamison with Gramma again and loaded Cayden back into the car. At the doctor's office, there was more pulse-ox monitoring, more listening with a stethoscope, but still no clear cut answer on what to do. Dr. Stanford didn't think he was struggling as much to breathe, but was still concerned about the sound of things. She said her gut feeling was that the wheezing, rattling, and coughing were all related to the one bad episode of reflux. Her thinking was that he was suffering from a sort of chemical burn that had irritated his esophagus all the way up to his vocal chords. She said I had been doing a great job of assessing his symptoms and taking care of him, and that if I was comfortable with it, she thought we could just keep him at home and observe him again overnight.
By this time, it was looking like Jason was going to be able to come home, and I felt a little more comfortable bringing Cayden home for the night. If I had to do it again on my own, without Jason and his pediatric/paramedic eye there to evaluate how he was doing, without his level headedness and help, I don't know if I would have been willing to do it. I was so sleep deprived and emotionally exhausted, and I felt I couldn't objectively assess how Cayden was doing anymore. He either seemed perfectly normal or sounded absolutely, terrifyingly sick, and I was swinging back and forth between hope and despair. She decided to increase his oxygen a bit to give him a little extra edge and said she'd call us to check in around 9 that night. We left the doctor's office around and soon after we got home, Jason had texted to say he was on the plane. I hadn't had a chance to update him on the latest happenings at the doctor, but he'd be home soon enough and I could tell him in person.
By the time Jason walked in the door around , Cayden was sounding really rattley and I couldn't wait for him to don his stethoscope and tell me what to do. I was sure a trip to the ER was in our immediate future. He listened and calmly, without hesitation, said, "It sounds like it's in his vocal chords. His lungs sound o.k." I just burst into tears! All of the anxiety, worry, fear just poured out and melted away. Without knowing what the doctor had said, he confirmed exactly what she was thinking. Although I thought Cayden sounded awful, Jason reassured me that he was o.k. A few minutes later, the phone rang: it was Dr. Stanford calling to check in. She was pleased that he didn't seem to be any worse and said to check in again in the morning. Jason got some dinner while I fed Cayden, then we switched and he held him upright while I got a bowl of chocolate ice cream. We sat and watched the latest episode of the TV show Parenthood before laying Cayden down in his crib and crawling into bed ourselves. Comforted by the presence and reassurance of my husband, I slept harder than I've slept for a long time and it felt so good!
Jamison is sick yet again (I know I just posted that he got sick a little over a week ago, but I swear to God, he is sick AGAIN, with ANOTHER round of sneezing, runny nose, and 102+ fever as of Saturday.)
Cayden's wheezing got to the point where I called the doctor's office at Sunday night to see what I should do. He didn't have a fever or runny nose, both which would be signs of a cold rather than just a reaction to his reflux, so that was slightly reassuring. Plus, his appetite was still normal and he was sleeping OK despite the wheezing. The answering service paged the Children's Hospital triage nurse, and after giving her all the details of Cayden's situation, she said the case was out of her range of dealing with, and she had our pediatrician, Dr. Stanford, call me directly.
Dr. Stanford gathered the information and said I did the right thing by calling, but in the end, she didn't think he needed to be rushed to the ER. Her gut feeling was that the wheezing was related to his reflux. She said to keep an eye on him throughout the night and that if anything got worse - if his color changed, if he looked like he was struggling to breathe, if he wouldn't eat - I should take him to the ER. She also said if he was the same by morning, I should bring him into her office first thing.
Keep in mind the rest of our scenario: Jason is out of town. My grandma is staying with us, but Jamison is moaning, running a fever, and not sleeping very well, and I didn't want to leave him with her if I had to go to the ER. What a dilemma!
Amazingly, we made it through the night without Cayden getting worse. He actually slept and ate on a regular schedule, but I was awake most of the time, listening, checking on him, terrified he would turn blue.
After a month of waiting, we finally had our first visit weekly home visit from an occupational therapist at Monday morning. Cayden ate around and seemed to be breathing alright, so I didn't feel the need to cancel the therapy appointment to rush to the doctor's office first thing that morning. But as Murphy's law would have it, as soon as the therapist showed up, his breathing started sounding worse and worse. She was concerned that he was coming down with something and kept mentioning pneumonia, and that he didn't sound good. She gathered her initial information and briefly discussed some exercises I should be starting with to reach our goal of getting him to breast feed more, but we didn't actually do any of the exercises for fear of exacerbating the problem. She cut the session short and suggested I take him to the doctor right away.
So after getting Jamison (somewhat) settled with Grandma, I rushed out the door to Dr. Stanford's office. We spent over two hours there and left without any definite answers, but the doc was leaning more toward his symptoms being related to a bad episode of reflux rather than coming down with a cold. They monitored his oxygen saturation and heart rate the whole time we were there and it looked great. She listened to his breathing but couldn't make a clear determination of the source (upper airway vs. lower). Frustratingly, the wheezing and rattling noises came and went, and it seemed as soon as someone put a stethoscope on him, he would breathe normally. There was discussion of needing a chest x-ray. The nurses did a deep suctioning of his nasal passages to clear out any aspirate that was there. The doc consulted with a pulmonologist from Children's Hospital to get his advice. The pulmonologist said there is no consensus on how to treat or proceed with a case like Cayden's, but gave a couple options: a conservative route of prophalactically treating with a short course of steroids or a more aggressive route of hospital admission, chest x-ray, and observation for 24 hours or more. Given my situation at home, we decided to go with the less invasive choice. He got his first dose of steroids in the office, then the doc sent us home but told us to come back at the end of the day unless he made some sort of stellar improvement by then. She said she wanted to examine him again and then make the next decision about whether or not to send him on to the hospital.
In the hours we were at the doctor's, I tried getting a hold of Jason to let him know what was happening, but he had limited phone signal, so we were left trying to communicate by text. I asked if there was any way he could come home early (he wasn't scheduled to be home until Tuesday night). He said he'd see what he could do, but in the meantime, we were both scrambling to reach out to friends we thought might be able to help Gramma take care of Jamison in case he couldn't make it back and I had to take Cayden to the hospital. There were so many loose ends, so many unknowns, so much anxiety and worry and stress!
Around , we headed home. Thankfully, Gramma had managed o.k. with Jamison, so that was a relief. I was deliriously exhausted, but there was no time for sleep. The few hours we were home flew by, and before I knew it, it was time to go back to the doctor. (There was no 'stellar' improvement on Cayden's part in that short time, and I was concerned because he seemed to be coughing more. Not just his typical 'reflux' cough, but a more drawn out, whistling/wheezing, sort of croupy sounding cough.)
So I left Jamison with Gramma again and loaded Cayden back into the car. At the doctor's office, there was more pulse-ox monitoring, more listening with a stethoscope, but still no clear cut answer on what to do. Dr. Stanford didn't think he was struggling as much to breathe, but was still concerned about the sound of things. She said her gut feeling was that the wheezing, rattling, and coughing were all related to the one bad episode of reflux. Her thinking was that he was suffering from a sort of chemical burn that had irritated his esophagus all the way up to his vocal chords. She said I had been doing a great job of assessing his symptoms and taking care of him, and that if I was comfortable with it, she thought we could just keep him at home and observe him again overnight.
By this time, it was looking like Jason was going to be able to come home, and I felt a little more comfortable bringing Cayden home for the night. If I had to do it again on my own, without Jason and his pediatric/paramedic eye there to evaluate how he was doing, without his level headedness and help, I don't know if I would have been willing to do it. I was so sleep deprived and emotionally exhausted, and I felt I couldn't objectively assess how Cayden was doing anymore. He either seemed perfectly normal or sounded absolutely, terrifyingly sick, and I was swinging back and forth between hope and despair. She decided to increase his oxygen a bit to give him a little extra edge and said she'd call us to check in around 9 that night. We left the doctor's office around and soon after we got home, Jason had texted to say he was on the plane. I hadn't had a chance to update him on the latest happenings at the doctor, but he'd be home soon enough and I could tell him in person.
By the time Jason walked in the door around , Cayden was sounding really rattley and I couldn't wait for him to don his stethoscope and tell me what to do. I was sure a trip to the ER was in our immediate future. He listened and calmly, without hesitation, said, "It sounds like it's in his vocal chords. His lungs sound o.k." I just burst into tears! All of the anxiety, worry, fear just poured out and melted away. Without knowing what the doctor had said, he confirmed exactly what she was thinking. Although I thought Cayden sounded awful, Jason reassured me that he was o.k. A few minutes later, the phone rang: it was Dr. Stanford calling to check in. She was pleased that he didn't seem to be any worse and said to check in again in the morning. Jason got some dinner while I fed Cayden, then we switched and he held him upright while I got a bowl of chocolate ice cream. We sat and watched the latest episode of the TV show Parenthood before laying Cayden down in his crib and crawling into bed ourselves. Comforted by the presence and reassurance of my husband, I slept harder than I've slept for a long time and it felt so good!
Wednesday, April 6, 2011
Nonna Lena is here!
My grandma Lena arrived from Pittsburgh yesterday to help out for awhile - maybe as long as three weeks - while Jason works a couple stretches of five or six days at a time and while our daycare provider is on vacation for one of those weeks. Nonna Lena is the is the original baby whisperer! Babies just melt at her touch and are transfixed by her sing-song voice telling them stories or playing "pecora, pecora" (an Italian sort of tickle game about a little sheep tip-toeing all over your body). Cayden has already spent many hours sleeping on her shoulder. Jamison is happy to see her again too!
We had a weight check at the pediatrician's office yesterday. Cayden is 8 lbs. 5 oz. and she is satisfied with his progress. We won't be making any changes in his fortification or thickener any time soon, but she said I should keep up with the breast feeding at least a couple times a day to see how he handles it.
We had a weight check at the pediatrician's office yesterday. Cayden is 8 lbs. 5 oz. and she is satisfied with his progress. We won't be making any changes in his fortification or thickener any time soon, but she said I should keep up with the breast feeding at least a couple times a day to see how he handles it.
Saturday, April 2, 2011
I wish it was an April Fool's Day joke...
...but I don't think it is. As of yesterday, Jamison is sick AGAIN. I don't know that he ever completely got over the original cold he came down with back in November, right after Cayden was born, but this will be the third (or maybe fourth-I've lost track) round of fever, runny nose, coughing, sneezing, fussing, yellow/green snot, and sleepless nights. It's been a big worry of ours - what to do if (ok, when) he gets sick and how to keep Cayden from catching it because for Cayden, it could be very serious and easily put him back in the hospital.
Our suspicion is that maybe these episodes of sickness are symptoms brought about when Jamison is teething. Each time this has happened, we've also noticed an increase in drooling and then sure enough, within a week or less, he's got new teeth. Is that possible?
But just in case it's not all teething related, we're trying our hardest to keep some distance between the boys and to be vigilant about washing our hands. It's difficult, to say the least. Jason is leaving town again this afternoon, so I'm extra anxious about handing one sick toddler and one susceptible preemie baby by myself. Before we left the NICU, I asked the doctors and nurses how to deal with just such a situation. They told me, "Do your best, but you can't keep Cayden in a bubble". So I guess it's up to fate and good hand washing from here on out...
Cayden has been sleeping better the last couple of days, so that's been a huge relief. He's been putting away some serious amounts of milk too - 90 or 100 ccs at a time (which is 3 ounces or more). Plus, I've been letting him breast feed two or three times a day in addition to all of the milk he takes from bottles. He seems to be tolerating it well. Spit-up episodes have been infrequent, maybe once a day, if that. We also bumped up the size of the nipple on his bottle so he doesn't have to work as hard to suck the thickened milk through the opening. He seemed to be getting frustrated with bottle feeding, so we decided to give it a try again (before we left the NICU, they tried a larger nipple but he wasn't able to handle the increase flow and choked.) Now that he's a little bigger and more experienced, he did great! Instead of "milking" a bottle for 30 minutes, he will polish it off quickly, sometimes in just 10 minutes. So with all of these little changes, we're hoping he'll continue to gain weight, sleep soundly, and do well. Our next weight check will be on Tuesday this week, so we'll see how he's doing then.
Our suspicion is that maybe these episodes of sickness are symptoms brought about when Jamison is teething. Each time this has happened, we've also noticed an increase in drooling and then sure enough, within a week or less, he's got new teeth. Is that possible?
But just in case it's not all teething related, we're trying our hardest to keep some distance between the boys and to be vigilant about washing our hands. It's difficult, to say the least. Jason is leaving town again this afternoon, so I'm extra anxious about handing one sick toddler and one susceptible preemie baby by myself. Before we left the NICU, I asked the doctors and nurses how to deal with just such a situation. They told me, "Do your best, but you can't keep Cayden in a bubble". So I guess it's up to fate and good hand washing from here on out...
Cayden has been sleeping better the last couple of days, so that's been a huge relief. He's been putting away some serious amounts of milk too - 90 or 100 ccs at a time (which is 3 ounces or more). Plus, I've been letting him breast feed two or three times a day in addition to all of the milk he takes from bottles. He seems to be tolerating it well. Spit-up episodes have been infrequent, maybe once a day, if that. We also bumped up the size of the nipple on his bottle so he doesn't have to work as hard to suck the thickened milk through the opening. He seemed to be getting frustrated with bottle feeding, so we decided to give it a try again (before we left the NICU, they tried a larger nipple but he wasn't able to handle the increase flow and choked.) Now that he's a little bigger and more experienced, he did great! Instead of "milking" a bottle for 30 minutes, he will polish it off quickly, sometimes in just 10 minutes. So with all of these little changes, we're hoping he'll continue to gain weight, sleep soundly, and do well. Our next weight check will be on Tuesday this week, so we'll see how he's doing then.
Tuesday, March 29, 2011
Mr. Fuss
Cayden is going on 24 hours without a good stretch of sleep. I don't think he's slept for more than 30 minutes in his crib. About the only way we can get him to sleep is if he is laying on someone's chest or if I have him in the Baby Bjorn front carrier. Otherwise, he just shrieks and cries and grimaces and writhes and looks completely miserable. I'm hoping it's just a temporary reaction to another vaccination he had yesterday afternoon.
A nurse came to our home to administer his last shot of Synergis for the season. She weighed him - he is officially 8 pounds! - and did a brief exam as well. She was friendly and talkative and seemed competent enough, but when she left, I about passed out when she bent down and kissed him on the cheek. I was completely speechless and it was all I could do to not shriek and smack her upside the head. The woman should know that you don't TOUCH anyone else's baby, especially a preemie, without washing your hands, let alone put your nasty germ-laden lips all over one! I don't know if I'm over reacting to this or what, but I am seriously considering calling the agency to tell them what she did. It just horrifies me that a pediatric health care professional would administer a vaccination to a preemie so that his chance of catching a life-threatening virus are reduced, then turn around and potentially expose him to whatever she may have been in contact with. Unbelievable!
In other news, I saw the official email that went out at work today announcing that I won't be returning any time soon because I need to stay home to take care of my family for now. As of Friday, I will officially be unemployed. I don't know why I'm having such a hard time with it. I always thought it would be awesome to be a stay-at-home mom, but I am absolutely panicked at the thought of giving up my career. My hope is to return in a year or so, once Cayden's immune system is mature enough for him to go to daycare, but I'm just having a really hard time letting go for now. I've never been good with change, especially change that I don't have much of a say in. I guess I just have to trust that things will work out and rely on the 'everything happens for a reason' faith.
A nurse came to our home to administer his last shot of Synergis for the season. She weighed him - he is officially 8 pounds! - and did a brief exam as well. She was friendly and talkative and seemed competent enough, but when she left, I about passed out when she bent down and kissed him on the cheek. I was completely speechless and it was all I could do to not shriek and smack her upside the head. The woman should know that you don't TOUCH anyone else's baby, especially a preemie, without washing your hands, let alone put your nasty germ-laden lips all over one! I don't know if I'm over reacting to this or what, but I am seriously considering calling the agency to tell them what she did. It just horrifies me that a pediatric health care professional would administer a vaccination to a preemie so that his chance of catching a life-threatening virus are reduced, then turn around and potentially expose him to whatever she may have been in contact with. Unbelievable!
In other news, I saw the official email that went out at work today announcing that I won't be returning any time soon because I need to stay home to take care of my family for now. As of Friday, I will officially be unemployed. I don't know why I'm having such a hard time with it. I always thought it would be awesome to be a stay-at-home mom, but I am absolutely panicked at the thought of giving up my career. My hope is to return in a year or so, once Cayden's immune system is mature enough for him to go to daycare, but I'm just having a really hard time letting go for now. I've never been good with change, especially change that I don't have much of a say in. I guess I just have to trust that things will work out and rely on the 'everything happens for a reason' faith.
Saturday, March 26, 2011
An extra pair of hands
We've had some much needed, much appreciated help since Tuesday when my cousin Jennifer flew in from Pittsburgh to help us out for a few days while Jason is out of town for work. She's been a lifesaver, stepping in and doing everything like only a pro, mother-of-four can do. She's been helping us establish a more consistent routine with Cayden, even getting him to sleep his longest stretches of four to five hours during the night so that I can get a bit of sleep. It's been so wonderful having her around!
We've had a couple more doctor appointments this week. One was a consult for Cayden's hernia surgery, which we scheduled for May 9th. While we were there at Children's Hospital, I met with one of the Children's lactation consultants to discuss the outlook for breast feeding Cayden. I've gotten the feeling from our pediatrician that she's not optimistic about the likelihood of continuing to nurse long-term. My hope is to be able to nurse exclusively so he can get the benefits of breast milk without my having to pump and then fortify and thicken it, but because of his reflux, that may be difficult. The lactation consultant was very supportive and gave me some pointers for reaching my ultimate goal. So we're trying the things she suggested and we'll see if we can get rid of all of these extra complicating things like the pump, bottles, formula, thickener, etc. Life will be so much easier if I can just nurse him and not have to worry about all of those other things!
On Friday we went back to Dr. Stanford, our pediatrician, for another weight check. Cayden was up to 7 lbs. 12 oz! She's happy with that amount of weight gain and we're only going to continue weighing in as I start to nurse more often to make sure he's still gaining enough without the caloric supplementation. Other than that, we don't have another appointment with her until May 2nd for his 6-month visit. She was going to order a pulse-ox machine so we could do a 12-hour room air challenge at home to determine if maybe he can come off of his oxygen, but I inadvertently talked her out of it by letting her know that I didn't expect him to be able to come off of it so soon, given that the NICU docs said to expect him to be on oxygen a good six months or so. Although dealing with the oxygen at home is a pain, I'd rather be safe than sorry.
The increased dose of Prevacid that Dr. Stanford prescribed seems to be doing the trick as well. Cayden hasn't been spitting up and doesn't seem as uncomfortable after eating. Here's hoping the little guy feels better and that we can soon put all of this reflux stuff behind us!
We've had a couple more doctor appointments this week. One was a consult for Cayden's hernia surgery, which we scheduled for May 9th. While we were there at Children's Hospital, I met with one of the Children's lactation consultants to discuss the outlook for breast feeding Cayden. I've gotten the feeling from our pediatrician that she's not optimistic about the likelihood of continuing to nurse long-term. My hope is to be able to nurse exclusively so he can get the benefits of breast milk without my having to pump and then fortify and thicken it, but because of his reflux, that may be difficult. The lactation consultant was very supportive and gave me some pointers for reaching my ultimate goal. So we're trying the things she suggested and we'll see if we can get rid of all of these extra complicating things like the pump, bottles, formula, thickener, etc. Life will be so much easier if I can just nurse him and not have to worry about all of those other things!
On Friday we went back to Dr. Stanford, our pediatrician, for another weight check. Cayden was up to 7 lbs. 12 oz! She's happy with that amount of weight gain and we're only going to continue weighing in as I start to nurse more often to make sure he's still gaining enough without the caloric supplementation. Other than that, we don't have another appointment with her until May 2nd for his 6-month visit. She was going to order a pulse-ox machine so we could do a 12-hour room air challenge at home to determine if maybe he can come off of his oxygen, but I inadvertently talked her out of it by letting her know that I didn't expect him to be able to come off of it so soon, given that the NICU docs said to expect him to be on oxygen a good six months or so. Although dealing with the oxygen at home is a pain, I'd rather be safe than sorry.
The increased dose of Prevacid that Dr. Stanford prescribed seems to be doing the trick as well. Cayden hasn't been spitting up and doesn't seem as uncomfortable after eating. Here's hoping the little guy feels better and that we can soon put all of this reflux stuff behind us!
Monday, March 21, 2011
GREAT news today!
Cayden had his first post-discharge ROP follow-up eye exam today at Children's Hospital and it was the best news we've had in a long time: both eyes have mature vessels with no evidence of ROP! I have to admit I was shocked. I thought for sure we were going to end up with stage II in that left eye, but our little fighter overcame once again. Words cannot express how happy and relieved we are.
When he had his eye exams at the University NICU, the nurses and doc there said I probably shouldn't watch as it "wasn't very pleasant" to see, although it didn't hurt the baby at all. So I was surprised at Children's today when Dr. Enzenauer (who was really great - kind, jovial, upbeat) said that one of us parents would need to hold him while they did the exam. Nervous as I was, I stepped up (well, sat down, actually) and held my swaddled little bubba while they placed the retractors in his eyes and poked around to fully examine the retinas. Cayden cried and it made me cry, but I think he cried mostly because he didn't like having his arms restrained and I cried because I felt so bad for all he's been through at this young age.
Dr. Enzenauer cautioned us that although Cayden does not have ROP, preemies are at a higher risk (20% vs. 5-8% in term babies) for developing other eye diseases such as lazy eye, cross-eyes, and extreme nearsightedness, but that these issues won't be apparent until 8-12 months of age. We'll follow up at six months and then again at a year unless we notice any obvious problems, but for now, we've cleared another big hurdle of prematurity.
In other news, we met with Jennifer, a pediatric nurse, in our home on Friday afternoon. I thought she would be doing some hands-on evaluation or therapy, but it turned out that she is more of a paperwork/administrative/services liaison. She was a GOLDMINE of information and potential help. Not only does she know who to call, when, and what to say, but she will actually make the calls and arrange services for us for everything from in-home nursing visits to Social Security benefits to respite care. She's like our own personal assistant for all of these tedious, tangled, confusing issues that need to be addressed but that I don't have the time or understanding to deal with. After her visit, we felt such relief and hope that help will be on its way soon.
Neither Jason nor I have been getting much sleep since Friday. I don't know if it's a side effect of the vaccines Cayden had or if he's having a growth spurt or if he's just learning that if he cries, Mommy or Daddy will hold him and he really enjoys that, but he has been Mr. Fuss pretty much 24/7 unless he's being held. We've noticed that he does not like being on his back and has been crying any time we lay him in his crib. If we hold him so that his tummy is up against our shoulder or chest, he will sleep peacefully but as soon as we try to lay him down, he wakes up and shrieks. Poor thing. Poor us! Hopefully this is just a phase...we ALL need some sleep!
When he had his eye exams at the University NICU, the nurses and doc there said I probably shouldn't watch as it "wasn't very pleasant" to see, although it didn't hurt the baby at all. So I was surprised at Children's today when Dr. Enzenauer (who was really great - kind, jovial, upbeat) said that one of us parents would need to hold him while they did the exam. Nervous as I was, I stepped up (well, sat down, actually) and held my swaddled little bubba while they placed the retractors in his eyes and poked around to fully examine the retinas. Cayden cried and it made me cry, but I think he cried mostly because he didn't like having his arms restrained and I cried because I felt so bad for all he's been through at this young age.
Dr. Enzenauer cautioned us that although Cayden does not have ROP, preemies are at a higher risk (20% vs. 5-8% in term babies) for developing other eye diseases such as lazy eye, cross-eyes, and extreme nearsightedness, but that these issues won't be apparent until 8-12 months of age. We'll follow up at six months and then again at a year unless we notice any obvious problems, but for now, we've cleared another big hurdle of prematurity.
In other news, we met with Jennifer, a pediatric nurse, in our home on Friday afternoon. I thought she would be doing some hands-on evaluation or therapy, but it turned out that she is more of a paperwork/administrative/services liaison. She was a GOLDMINE of information and potential help. Not only does she know who to call, when, and what to say, but she will actually make the calls and arrange services for us for everything from in-home nursing visits to Social Security benefits to respite care. She's like our own personal assistant for all of these tedious, tangled, confusing issues that need to be addressed but that I don't have the time or understanding to deal with. After her visit, we felt such relief and hope that help will be on its way soon.
Neither Jason nor I have been getting much sleep since Friday. I don't know if it's a side effect of the vaccines Cayden had or if he's having a growth spurt or if he's just learning that if he cries, Mommy or Daddy will hold him and he really enjoys that, but he has been Mr. Fuss pretty much 24/7 unless he's being held. We've noticed that he does not like being on his back and has been crying any time we lay him in his crib. If we hold him so that his tummy is up against our shoulder or chest, he will sleep peacefully but as soon as we try to lay him down, he wakes up and shrieks. Poor thing. Poor us! Hopefully this is just a phase...we ALL need some sleep!
Saturday, March 19, 2011
Friday, March 18, 2011
Doctor, doctor
Just back from our third visit to the pediatrician in eight days. Today's primary purpose was for Cayden's 4-month vaccinations but they also did a weight check. Although he was up two ounces from Monday, Dr. Stanford wants to see him again in a week. If he had gained more, we wouldn't have to go back for a month. As of now, he weighs 7 lbs. 7 oz. and he seems to be eating well over the last few days, but he seems so uncomfortable and miserable after he eats. Poor little guy. Reflux sucks.
This afternoon, we're getting a visit from a home nurse. I'm not exactly sure what all she's going to do, but I think the main purpose is to check in, assess how Cayden is doing, and decide if we qualify for more frequent visits. I'm hoping maybe we'll get some consistent help, especially during times when Jason is gone.
Speaking of help, we've been blessed with meals from Colorado Community Church every other day for the past week. My friend and co-worker, Rachel, signed us up for their Prepared Meals Ministry that she participates in. Once again, I am overwhelmed at the kindness and generosity of people - total strangers in this case. We are so thankful!
This afternoon, we're getting a visit from a home nurse. I'm not exactly sure what all she's going to do, but I think the main purpose is to check in, assess how Cayden is doing, and decide if we qualify for more frequent visits. I'm hoping maybe we'll get some consistent help, especially during times when Jason is gone.
Speaking of help, we've been blessed with meals from Colorado Community Church every other day for the past week. My friend and co-worker, Rachel, signed us up for their Prepared Meals Ministry that she participates in. Once again, I am overwhelmed at the kindness and generosity of people - total strangers in this case. We are so thankful!
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