Tiny hand

Tiny hand
November 20, 2010 (one day old)

Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Monday, February 28, 2011

February 28, 2011 - Cayden's due date

One hundred and two days later and we've finally arrived at Cayden's original due date.  It's been a weird, bittersweet day.  I keep thinking what it should have been like around this time - coming home with our newborn, introducing Jamison to his little brother, welcoming family and friends who want to come over and meet our new baby. 

I am so grateful that Cayden has done as well as he has, but our homecoming (when it finally does happen) will not be as idyllic as I imagined.  In addition to the normal new baby joys of constant feedings, dirty diapers, and sleep deprivation, we'll be dealing with home oxygen, tubes, wires, medication, supplements, fortifiers, and a constant fear of germs that could send Cayden straight back to the hospital.

I try not to get too overwhelmed thinking about what life is going to be like after he comes home.  I'm sure we'll manage.  We'll just continue taking things one day at a time until all of the oxygen, tubes, wires, medications, supplements, fortifiers, and constant fear of germs are nothing but memories.

They finally decided to start Cayden on Prevacid today to help with his reflux.  He also got another monthly shot of Synagis to help protect him against RSV.  And to celebrate his supposed-to-be birthday, Cayden tipped the scale at 7 whole pounds tonight!  (Technically, he was 6 lbs. 15.7 oz., but that rounds up to 7 pounds, right?)
THEN-2 lbs. 0 oz. (The day after he was born, 11/20/10)
NOW-7 lbs. 0 oz. (The day he was supposed to be born, 2/28/11)

Bracelet be gone!

For the past 100 days, I've worn my hospital ID bracelet that identifies me as a NICU parent.  It gives me access to the NICU and the hospital in general after hours. After about three weeks, it started looking ratty enough that I asked the nurses if I could get a new one.  At that point, they told me they knew who I was so I didn't need to wear it all the time, and that I could just carry it with me in my purse when I needed to get past the security at night.  I refused to take it off.  My mantra was that I would not take it off until it fell off on its own or until Cayden came home.  About two months in, Virginia, one of the lactation consultants, saw it on my wrist and threatened to cut it off of me because it was so gnarly looking.  The ink had run, the plastic was cracking, and I'm not sure, but there may have been some pretty orange mold growing on the paper inside the plastic.  Still, I would not take it off.  Call me crazy, but I had come to associate my hanging onto that bracelet with Cayden hanging onto life.

Well, as of Friday, Virginia won't have to worry any more.  I rolled out of bed that morning and as I was throwing the covers up over the pillows, there it was.  Detached.  Separated.  Free.

I may be imagining things, but now that the bracelet has fallen off, it seems that Cayden is picking up steam in his feeding progress.  He is consistently nippling more and more.  Today, there was talk about the things we (as parents) need to complete before he can be discharged, like CPR training.  All of a sudden, it feels like the end of this long marathon may be closer than I dared hope.  I should have cut that damn thing off months ago!

And now for the weekend weight update:
Friday night: 6 lbs. 12.4 oz.
Saturday night:  6 lbs. 12.8 oz.
Sunday night:  6 lbs. 13.5 oz.
He's going to weigh 7 pounds before we know it!

Friday, February 25, 2011

Return of the Masked Mama

Despite having a mild sore throat (I'm pretty sure I'm either desperately trying to fight off or catching what Jamison has), I went to visit Cayden at the hospital yesterday and today, so that meant wearing one of those lovely duckbill masks and washing like crazy.  I even make sure to change my clothes before I leave the house then I change into a hospital gown when I get there. 

Had a nice, reassuring conversation with the new fellow who took over a couple weeks ago.  They brought up the idea of Cayden going home with the gavage feeding tube at rounds and she wanted to talk to me more about that.  She said it is an option if I'm totally over him having to stay in the hospital just because he's not taking all of his milk by nipple, but not something they do very often.  I told her as much as I want him to come home, I'm not quite that anxious and maybe we can revisit the issue if he's still there in a few weeks.

Seems like maybe Cayden heard our conversation because he has been taking a lot more by nipple the last few days!  I don't have the exact percentages, but if I had to guess, I would say he's more in the 40-80% range now.  The doctor said she thinks this new four-hour feeding routine is doing the trick and I have to agree.  Which is fine by me, because if he comes home on a 4-hour schedule, that'll give me a heck of a lot more time between feedings than I anticipated.  With Jamison, I was nursing him every couple of hours!

Good news at the scale as well:  Cayden has been gaining again since Wednesday.  He was 6 lbs. 8.7 oz. on Wednesday night and 6 lbs. 10.6 oz. on Thursday night.

Wednesday, February 23, 2011

Nursing like a champ!

I visited Cayden yesterday evening.  Since switching his feedings to every four hours, he was having his care times at 10, 2, and 6, but they talked about switching him over to 9, 1, and 5 instead, so when I arrived at 9, I expected to feed him right away.  Apparently, there was a lack of communication between the day nurse and the night nurse, so she wasn't ready for him then.  We ended up compromising and starting his cares at 9:30 - Cayden woke up and was screaming-hungry, so it's a good thing we didn't make him wait another 30 minutes!

He breast fed the best he's ever done!  He was wide-eyed, awake, and sucking for 20 minutes and even managed to nurse from both sides.  The scale confirmed his efforts:  he got 35 ccs!

There seems to be some conflict in what different nurses think is best.  Some think it's best to make him to take everything from a bottle (or the breast) rather than letting him get it the easy way by gavage, even if it means he won't take as much as he should.  Others think if he's too tired to take it by nipple, they should let him rest and give him the rest of what he should get at that feeding without having to work for it so he continues to put on enough weight.  I know they need him to take everything by nipple before they'll let him come home, but I feel that maybe it's worth the wait to let him do it on his own terms and just let him gavage when needed.  The night nurse had the same mindset and this morning at rounds, the doctors agreed with her and put it in writing as part of his orders.  They're concerned he's losing too much weight.  (Last night he was down another 22 grams.)

As for his eye exam on Tuesday, we made some progress.  The right eye is still stage 0/zone III (which means there is no evidence of ROP and the blood vessels have grown out as far as they need to).  The left eye has grown out farther (it's now at zone III instead of zone II) but there is still stage 2 ROP.  If this is how it stays, my understanding is that it may not affect much besides his peripheral vision, if anything.  But the blood vessels aren't finished growing yet so there is still hope that the ROP will reverse itself and go away completely.

I'll be taking another night off from going to the hospital today.  Jamison has come down with ANOTHER cold .  I called his pediatrician just to be sure it wasn't his last cold turning into an infection of some sort, and after doing an assessment over the phone, she said it sounds like he caught another (viral) cold.  So I couldn't take him to daycare today since he had a fever this morning, and I've got no one lined up to come over tonight to stay with him, so Cayden will have to do without me for one night!

Tuesday, February 22, 2011

Changing the feeding schedule again

The nippling evaluation yesterday didn't come up with any obvious problems, so no changes were made in regards to the Simply Thick, but Nurse Shawna suggested that maybe it would help to switch Cayden to a four hour feeding schedule rather than every three hours.  The docs agreed to give it a try, so they started that new routine last night.  He'll be getting more volume at each feeding, but he'll also have more time to rest in between.

When I went to visit him on Monday afternoon, he was pretty sleepy and didn't nurse well.  Nurse Shawna wanted me to try giving him a bottle immediately afterwards rather than gavage feeding him the rest.  We managed to get him to take another 25 ccs from the bottle before he passed out completely.  The good news is that he slept soundly and peacefully the whole hour and a half I kangarooed with him - no reflux at all!

He gained weight again last night and is up to 6 lbs. 8 oz.

Today, he has another eye exam in the afternoon and I'll be visiting him later tonight.

Monday, February 21, 2011

I'd rather sleep than eat

So the 12-hour ad-lib feeding trial actually ended up being more like 36 hours, but Cayden never did wake up often enough or eat enough to meet the minimum requirements for them to continue, so he's back on a 3/6/9/12 feeding schedule.  They put the NG tube back in last night around 9 and also increased his feed amount to 57 ccs.  He lost another 32 grams (a little more than an ounce) on Saturday night but managed to gain back 20 on Sunday night. 

Although he wasn't taking in enough milk during the ad-lib trial period, he did seem to be resting much more comfortably without any desatting or visibly painful episodes of reflux when I visited him on Sunday.  It's such a see-saw, back-and-forth, give-and-take, trial-and-error, frustrating thing:  he's not getting enough to grow, but he's not having as much painful reflux anymore.  Which evil do you choose?  For now, they're choosing to let him deal with the reflux, but he's having another nippling evaluation as we speak, so maybe that will give them an idea of something to change to help him feel better.

Sunday, February 20, 2011

Three months old today

Cayden was born three months ago and he's still 8 days away from his original due date.  That is just unbelievable to me.

I decided to take another day off from visiting the NICU on Saturday.  They started the 12-hour ad-lib feeding trial, so I figured it was a reasonable excuse to skip a day and let the nurses see how it goes with him determining when he wants to eat and then being able to take as much as he wants from a bottle.  I haven't called to check on him since early this afternoon, but at that time, he had taken 55 ccs at his 9 a.m. feeding.  Soon after that, the doctors did their morning rounds and decided it was time to pull his feeding tube and see how he did.  He woke up on his own at 11:45 a.m., screaming and hungry, then took another 55 ccs from a bottle, so he was right on track.  I'll be calling again here soon to see how he's done since then, so I will post the update later.

There were a couple of other things that happened on Friday that I didn't mention in the 'care conference' post.  Jason and I met with the early intervention services coordinator.  We developed a list of goals we want to achieve in first three months after Cayden comes home.  She will write up what's called the individualized family services plan that will spell out what services Cayden will receive to help reach those goals and then the care providers will start implementing services within 28 days of his discharge.

We also met with the developmental therapist to do a round of therapy with Cayden.  It's been awhile since either one of us has been present during a session, so the exercises have changed and evolved as he has grown and developed.  We will be responsible for doing these exercises with him once he's home, so Jason recorded the session so we have a video to watch to help us remember exactly what to do and how to do it!

Twice while I was breast feeding Cayden, his monitor suddenly started making that heart-stopping sound - he was desatting and his heart rate dropped because he was choking on milk.  The first time it happened, we were talking with the services coordinator and I was a bit distracted, so I didn't realize what was happening.  Once I realized it was his monitor that was alarming, I instinctively sat him up and started rubbing his back.  It seemed like forever, but I'm sure it was only a few seconds before he came out of it.  I was a wreck - it scared me like you wouldn't believe and I felt so guilty for not paying better attention to him while he was nursing.  The second time it happened, I was watching his every move - his sucking had started to slow and I think he might have dozed off with a mouthful of milk.  Nurse Shawna reassured us that the episodes were completely normal, it was not my fault, and I did exactly what I was supposed to do.  Later, I found out that although the brady alarm went off, it was only slightly below his lower tolerance range, so the episodes really weren't that serious.  She also promised us he would not be allowed to go home until he stopped having the episodes (as he matures and gets more 'practice', this shouldn't happen), so that was a relief.

Friday, February 18, 2011

Care conference

Today was the scheduled care conference.  Jason and I met with the attending physician, Dr. Rosance, Nurse Megan (who came in on her day off after having worked the night shift), a social worker, a developmental therapist, a lactation consultant, and the discharge coordinator.  I came in with an entire page full of questions and got answers to all of them.  Granted, some were not the answers I wanted to hear, but at least we have an idea of where we stand on things and where they want to go from here to get Cayden home.

Things we pretty much don't have to lose sleep over anymore: 
  • His heart issues (PDA - patent ductus arteriosis and ASD - atrial septal defect).  They're not likely to cause any problems and should eventually or may already have resolved on their own. 
  • The brain issue (IVH - intraventricular hemorrhage).  He is past the point of being at risk for this. 
  • His umbilical hernia.  Should resolve on its own.
Things that aren't life threatening but will still require some sort of follow up and treatment: 
  • His inguinal hernia.  Will most likely require surgery at some point to fix, but it's a very common procedure.  Depending on the severity, will be repaired a few days before discharge or later, around 4-6 months of age.
  • His eyes.  They're not yet fully developed, so he will have to be examined for ROP (retinopathy of prematurity) periodically until they are.  He may end up having to wear glasses at an early age, but hopefully, that will be the only consequence.  With some luck, his vision won't be affected at all.
  • His lung issues.  He does have chronic lung disease and BPD (bronchopulmonary displasia) but it's a mild form.  The doctor used the word "amazing" to describe how well he's done and the condition he's in given how severely premature he was.  Long term, this diagnosis means he'll be more susceptible to infections, and when he does get sick, it may be more severe, so we'll have to be extra vigilant about germs he's exposed to for the first year (until his immune system matures enough to cope.)
When he comes home, he will almost certainly be on oxygen.  Sounds like the ballpark estimate for how long he would need to be on it is somewhere between 6 months to a year.  (Of course, they're very hesitant about giving you time frames for all of these things.  I really had to pressure them to give me some idea.)

Unfortunately, he will have to be protected against RSV with the Synagis vaccine again next fall/winter.  Again, we just need him to get through this first year until his immune system has a chance to mature to be able to fight off infections as well as "normal" babies.

The good news:
  • He's gaining ground on his growth curve.  His weight is up from the low point of 10th percentile to around the 25th percentile.  His head circumference is charting a similar pattern.
  • He has no vital sign instability.  When he has oxygen desaturations and brady (drop in heart rate) episodes, they're directly related to an episode of reflux.
The plan/what's next:
  • Early next week, the developmental therapist and speech therapist will do another nippling evaluation to decide if the Simply Thick additive is still appropriate.  They may adjust the concentration or nipple size to see if it helps decrease or eliminate his episodes of painful reflux after feeding.
  • They're going to do a trial run over a 12 hour period to let him determine when and how much he wants to eat.  The thinking here is that maybe his reflux is being caused by being fed too frequently and that if he is given the opportunity to eat when he says he's hungry, then be allowed to take as much as he wants, he will be able to sleep longer and more comfortably.
  • Depending on the outcome of the above two things, they may end up trying him on Prevacid or Zantac to help with his reflux.
  • Continue breast feeding once a day if possible
My biggest question was when are we going to be able to bring Cayden home??!  Again, they won't say for sure, but my prodding and prying yielded me a ball park range of anywhere between a couple weeks to a couple months from now.  I honestly think a couple weeks is unlikely, but there is a slim chance it could happen.  No one, including me, wants him to come home before he's ready, so I'm trying hard to reconcile what my heart wants with what my head knows is best.

Finally, last night, his weight was up to 6 lbs. 6.9 oz. but tonight he lost about half an ounce.

Thursday, February 17, 2011

Getting the hang of it

For two days in a row now, Cayden has done a great job breast feeding!  On Tuesday night, he was awake and alert and nursed for a good 20 minutes.  I felt he got a good amount and finally, the scale corroborated what I thought he got (which was 22 ccs).

Last night, he was screaming at the top of his lungs at Nurse Megan during his cares - it was like he was trying to tell her how hungry he was.  She kept running into little problems that delayed getting him to the breast, like having to put a new EKG lead on him or having to find a clean outfit for him that fit, and he had absolutely no patience!  When he was finally able to nurse, he latched on and fed for 30 solid minutes.  That's as long as they'll let him go because any longer than that and he starts to burn too many calories for what he's ingesting.  I just knew he got a lot of milk that time and sure enough, the scale agreed - 34 ccs, his highest ever!

His weight has been increasing as well.  Tuesday night he was up to 6 lbs. 4.5 oz and then last night, he weighed in at 6 lbs. 6.6 oz. 

Tuesday, February 15, 2011

Bottle from Daddy

Cayden had a lot of visitors yesterday!  I spent a couple hours with him, trying to breast feed (but he was too tired after his therapy session that morning) and then kangarooing before Daddy and Jamison stopped by.  Jason got to give him a bottle for the first time at his 3:00 feeding while I headed off with Jamison in his stroller to try to get him to fall asleep for a bit.  I wound up riding the elevator to the fifth floor, which is the floor where he (Jamison) was born.  I stopped by the nurses' station to see if our favorite nurse who helped deliver him happened to be working.  Sure enough, she was, and she was so excited to see us!  Nurse Chu Chay came back down to the NICU with us so she could meet Cayden - back in 2009, as we were being discharged after Jamison was born, Chu Chay said she would see us again soon because she just knew we were going to be having another baby very soon.  At the time I laughed and said I wasn't so sure about that, but hugged her goodbye and left.  Who would have ever believed she would be so right?

One of Jason's former co-workers at Arkansas Childrens Hospital who now works at University Hospital also stopped by the NICU yesterday.  All of us were there at the same time, so Cayden's pod was pretty crowded!

Other than the visitors, there hasn't been too much excitement, which is a good thing.  He's been gaining weight steadily again - on Sunday night, he was up to 6 lbs. 2.2 oz then Monday, he gained another ounce to land him at 6 lbs. 3 oz.

Sunday, February 13, 2011

FYI - more pictures!

Just wanted to let everyone know that I've posted some new pictures here and there.  I know some of you have been asking for more pictures (Hi, Connie, Connor, Erin, and Declan!), so I didn't want you to miss them because I buried some of them in previous posts where they sort of fit in.

In addition to the two new pics on the right side of the blog under "The latest pictures of me" (11 weeks and 12 weeks), I put new pictures in the "Swallow Study" and "Big and Loud" entries.

And here's one more I wasn't sure where to put, but I just love it!
With Daddy, February 4, 2011

A night off, doctor's orders

Well technically, it's nurse's orders.  I guess the cracks in the dam have been starting to show, and people have been concerned.  I got a "talking to" by several people a couple days ago.  First, one of the NICU social workers called me at home to see how I've been managing, and that night, Nurse Megan had a heart-to-heart with me.  Other nurses, lactation consultants, and even the developmental therapists have also been talking - to me and to each other about me. With all of the juggling I've been doing, still trying to recover from being sick, and then slow or no progress by Cayden recently, I've been pretty emotional during visits to the NICU.  All of these people know well enough where I'm heading, having seen this situation play out hundreds of times before with other parents, and they decided that it was time to intervene.

So they want to schedule what they call a "care conference" - not so much in regards to Cayden's care, but more about taking care of myself.  Between the social worker and Nurse Megan, they pretty much told me I have to take a break.  They really want Jason to be there for the conference, but with him being out of town so much, it's been nearly impossible to plan.  Thankfully, his schedule has changed a bit for this week, freeing him up for a couple days, so we're scheduled for the conference on Friday.

I don't know how this conference is going to change anything.  There are only two things I think can ease the intense stress of our situation:  Cayden coming home or Jason not having to travel for work.  Neither of the options are anything we have control over, therefore, we're pretty much stuck for now.

It really frustrates and upsets me that the only way I can take this break that everyone is insisting I take is to not see Cayden for a day.  There are just not enough hours in a day to be able to do everything that I want and feel I need to do.  As it is, I'm not getting much sleep - I've pared that down to between four and six hours a night.  I've only gone to work for four hours in the past three weeks.  It takes a miracle (or even more sleep sacrificed) for me to be able to go to the grocery store or to be able to cook a healthy meal.  Fresh fruits and vegetables, normally eaten in mass quantities around our house, have been hard to come by.  Who has time to prepare a big, healthy salad for lunch when I barely have time to wash an apple to eat in the car on the way to the hospital?  Exercise is something else I've had to sacrifice, and I know I'm suffering physically as well as mentally because of it.  But to me, giving up sleep, healthy food, and exercise is easier than giving up seeing Cayden.

But I did as I was told to do and took a night off from going to the hospital last night.  I fell asleep on the couch at 10 o'clock, the first time I've slept before 1 a.m. in months.  Granted, I woke up at 12:45 to pump, but then I slept for six more hours straight before waking up to pump again.  And then I slept three MORE hours after that.  I think I'm recharged, for now.  As soon as I finish typing, we're going to go outside for a walk on this amazing, 60-degree Colorado winter day.  It may not be vigorous, heart-pumping exercise, but I think the fresh air and sunshine will do me some good.

So in the interest of getting outside, I'll cut to the chase regarding Cayden's recent progress . . .

On Thursday, he didn't gain much weight - only 2 grams - so he still weighed 5 lbs. 14 oz.  Nurse Megan was finally back after not having seen her for a couple of weeks, and she said she reviewed his charts and could see that he had been having a lot less desats with no "big" episodes since starting on the Simply Thick.  She thinks that's significant and that it's working to help with his reflux issues.

On Friday, he had a nice, big gain to push him past the 6 lb. mark at his weigh-in.  Officially, he was 6 lbs. 0.3 oz, but he made a giant poop soon after being weighed, so he probably dropped back down after that.  Oh, well.  We got 6 lbs. down in the record books before it happened!

On Saturday, he gained some more and weighed in at 6 lbs. 1.2 oz.

Over these past few days, he has been taking a good bit from the bottle.  It fluctuates anywhere from 10% to 60% being taken from the bottle, but it seems over the past few days, he's been more consistently toward the 60% end.  The past few times I've breast fed him, he seems to be doing very well with his technique, but isn't getting a lot of volume for the work he's doing.  The nurses still say he's doing well and is on track with it, but I wish he could get more for his effort.

Jamison and Jason are both (im)patiently waiting on me to go for a walk, so I guess I should finish up and get going!

Thursday, February 10, 2011

Finally going forward again

Thank goodness!  Cayden made up for not having gained any weight over the past few days by gaining a good amount last night.  He was up over 2.5 ounces and now weighs 5 lbs. 14.6 oz.  I sure feel better!  It's crazy how your mood is completely affected by and hinges on what that scale says every night.  Used to be that I'd pronounce it a bad day when I weighed myself and saw that I gained a pound or two -- now, I'm on the other side of that fence, praying for someone else to please gain an ounce or two!  Perhaps my prayer-wires got crossed somewhere in transit?  To clarify . . . Dear God, me: lose weight.  Cayden: gain weight!

Something else that made me feel better yesterday was an explanation about the Simply Thick additive.  I didn't realize that they're adding that to his milk but not compensating for the volume it displaces.  They add 15 mls of Simply Thick that has no caloric value, so he's losing 15 mls worth of calories from milk.  No wonder he's had trouble gaining weight since they started him on it!  15 mls times 8 feedings a day is a lot of calories to lose out on, especially when you're working so hard to ingest them to begin with.  The docs are supposed to adjust his total volume to make up for it and hopefully we'll be back on track.

Wednesday, February 9, 2011

More frustration

I feel like we're getting nowhere fast.  For the third night in a row, Cayden has not gained any weight.  In fact, he lost ten grams again last night.  I don't know what's going on.  It seems like he's stalled ever since they put him on the Simply Thick.  The hope was that it would make him take off - hardly.

I was so happy and relieved when he was awake, alert, and eager to breast feed last night.  He latched right on and sucked perfectly for a good, solid 15 minutes, so I was confident he got a good amount of milk.  When the nurse weighed him, the scale said he only got 5 mls.  Again, I don't know what is going on.  I know the scale is not always accurate and there is some fluctuation, but I thought for sure he got a good 20-30 mls at least. 

The doctors were doing their rounds while I was kangarooing after all this happened, and they asked if I had any questions.  I asked if they were concerned.  They said they weren't, but that they were frustrated like I was, and that he is likely just acting like a typical preemie - two steps forward, one step back.

Tuesday, February 8, 2011

Three visits in two days

Lucky me!  I got to see Cayden twice yesterday.  I planned to visit him early in the afternoon then had Jason pick me up at the hospital so we could watch some of the Superbowl at our friends' house downtown.  When he dropped me off to pick up our other vehicle at the hospital after the game, it was a few minutes before 9 - just in time for Cayden's care time!  So I decided to go up and see him.  I figured I could try feeding him then pump without having to rush home to do it.  The night nurse had started his cares early, and when I arrived at his pod, she had just started giving him a bottle.  Although I was disappointed I missed my chance to breast feed him, I did get to give him a bottle for the first time. 

Let me tell you, there is more to feeding a preemie than just sticking a bottle in their mouth and letting them go at it! Positioning of both the baby and the bottle is important: they can't be too upright or too reclined; their neck needs to be supported and straight in line with their body; a side-lying position works best.  You have to constantly make sure they're breathing by keeping your hand on their back and visually monitor their color, all while "pacing" the feeding.  Tip the bottle up, hold, suck-suck-suck, breathe, swallow, tip the bottle back, rest, repeat.  I was exhausted after feeding him, so I can only imagine how tired it must make him!  He finished all 49 mls of his milk and promptly fell asleep.  I stayed a few minutes longer, then headed home.

Disappointingly, he didn't gain any weight on Sunday night.  Technically, he actually lost 2 grams, but it didn't make a difference in the pounds/ounces conversion.

Today (Monday), I visited him long enough to catch two care times.  I tried breast feeding him both times, but he didn't do well either time.  However, he did great overnight - he nippled two and a half bottles out of four - so that could be part of the reason he was a little lethargic at the breast today.  He also had a developmental therapy session in the morning and then an eye exam in the afternoon, so both of those things most definitely could have tuckered him out even more.  I'm trying not to be too disappointed.  Of course, I blame his lack of success on the fact that I missed seeing him three days last week while I was sick.

As for his eye exam, there was no change since the last one two weeks ago.  I was hoping the left one would have finished developing and the stage II ROP would have cleared up, but I guess no change is better than it getting worse, and since the blood vessels are not yet mature, there's still time for them to normalize.

Saturday, February 5, 2011


I'm starting to get the feeling that Cayden may still be in the hospital well beyond his due date.  The nurses and the fellow I've talked to over the past couple of days have all sort of been hinting at it, but no one will say for sure.  Of course, they don't have a crystal ball to look into to be able to tell how he'll do over the next three weeks, but from their experience and looking at Cayden's history, they're saying it wouldn't be surprising if he had to stay longer. 

There's nothing I want more than to have our family all under one roof as soon as possible, but I understand that the hospital is the best place for him to be until he gets all of his issues worked out.  I just wish "as soon as possible" was sooner rather than later.

There hasn't been any obvious breakthrough yet since they put him on the Simply Thick additive, but now I'm hearing it may take up to a week to see the results.  His weight was up again tonight to 5 lbs. 12 oz.

For some reason lately, my patience is wearing thin.  Everything is wait and see, wait and see.  I'm getting so tired of waiting and not seeing what I want to see!  Or just when I think I can see light at the end of the tunnel, someone moves the end of the tunnel further out.

I guess we've reached that proverbial plateau in the marathon.  I'm tired.  But I've got no choice but to cinch up my laces and keep running.

Swallow study (Friday, February 4)

Cayden had the first part of what they call a 'swallow study' today.  A developmental therapist and a speech therapist worked together to feed him from a bottle and observe how he did.  You wouldn't believe the information they can gather just by watching, listening with a stethoscope, and being in tune with him.  They were trying to determine what, if anything, may be able to help with his reflux issues. 

The reflux has been going on for several weeks now.  It seems I kept hearing it was something he should eventually outgrow, but he has been having some significant desatting episodes after feeding, so I guess they finally decided they needed to take action.

After their observation, the therapists determined that thickening his feeds with a gelatin additive known as "Simply Thick" should help in his case.  So they mixed up a bottle and fed the thickened breast milk to him while listening and observing again.  They also experimented with different types of bottles and nipples, finally deciding that Dr. Brown's bottles with a #2 nipple will work best for him.  It just amazes me that these people can figure out such tiny details to manipulate to give Cayden the best possible chance of doing well.

If this change in formula consistency is going to help, it's usually apparent within a day and the change should be marked for him.  They say that in a lot of cases, babies really take off and start packing on weight like crazy because they're able to tolerate their feeds so much better.

It's funny, because I keep thinking he's doing fine in the 'packing on weight' department.  He's gained two ounces every night since Wednesday, making him 5 lbs. 11 oz. as of tonight.  But I got schooled in the bigger picture today by one of the fellows on staff, Dr. Wright.  She showed me Cayden's growth chart.  At birth, his weight was in the 50th percentile (for a 25-weeker).  Since then, he has dropped down below the 10th percentile for weight.  If he had been born in the 10th percentile, they wouldn't be so concerned, but because he has dropped so far, they are.  The hope is that they can get him back up to the 50th percentile with these thickened feeds.  They said to give him the weekend and we'll talk on Monday about where things stand . . .

Wednesday, February 2, 2011

Big and loud

I don't know if it's because I haven't seen him in two days or because he really is bigger, but Cayden looked BIG last night when I finally got to see him!  Of course, his weight has gone up, up, up over the past two days - he weighed in at 5 lbs. 4.5 oz. on Monday night and tipped the scale at 5 lbs. 5.5 oz. last night.  I've heard of full-term babies weighing that much when they're born!  His face is full and round with those chubby cheeks, and he was busting the buttons on the preemie outfit the nurse dressed him in last night.  It's the first time he's worn it and will probably be the last!

Then there's his cry.  He let out a wail two or three times while I was holding him and it actually made me wince it was so loud!  I could swear that just two days ago, all he could muster was a weak, muted whine.  Not anymore!  It's music to my ears.

I will be heading out in the bitter cold in a few minutes to see him again.  Jason is stuck in Toronto because of the bad weather back East and I just got short notice that our daycare provider, Mayra, has to leave the country to attend the funeral of a dear friend of the family, so I want to get my visits in while I can because who knows when I'll be able to get back to the hospital with all of my first-line help falling through . . .