Tiny hand

Tiny hand
November 20, 2010 (one day old)

Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

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.

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!

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!

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 . . .

"I have a question!"

Cayden - about 5 weeks adjusted age (April 4, 2011)

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.

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!

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.

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.