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.

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!

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.

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.

Plateau

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 . . .