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)

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.

Discharge goals

Well, since I'm still sick and I had to keep Jamison home from daycare because he's still sick too, there is no way I can go to the hospital today.  Two days in a row, three out of four, and I am so sad.  So I say let's talk about something cheerful - the day when Cayden gets to come home!

Lots of people have been asking when they'll let him come home.  There is no set date or specific weight he has to get to, but there are several things he has to be doing and tests he has to pass:

• He has to be taking eight bottles a day. They want to be sure that he will be able to obtain enough nutrition once he's home.  Once he reaches the goal of eight bottles a day (which means one every three hours), they will switch to what they call "ad lib" feeding, where instead of waking him to feed him every three hours, they let him determine when he wants to eat.  When he wakes up and shows he's hungry, whether it's by crying or rooting around, they'll feed him.  The nurse said they like to try to get them down to feeding every 3.5-4 hours by the time they're discharged which would be wonderful!  Most newborns eat every 2-3 hours, so if I can get an extra hour or two in between feedings, I'll take it!  Of course, if he's only eating six times a day, he'll have to eat more at each feeding, but it should all balance out.
• He has to pass what they call the "room air challenge".  They disconnect him from his oxygen and he has to get through 40 minutes without his oxygen saturation dropping below 80. 
• He has to have gone five consecutive days without any bradycardia episodes.
• He has to be gaining weight.  There is no exact amount, he just can't be losing weight or not gaining any.
• He has to sit in his car seat and not drop his oxygen saturation.  Apparently, because they tend to be kind of scrunched up in their car seat, it can decrease the amount of oxygen they're getting, so they want to make sure whatever seat we have, he can manage to breathe in.

Cayden is 36 weeks as of today.  He's taking 3 or 4 bottles a day, so we still have a way to go before he's up to 8, but he's making good, steady progress in the right direction and hopefully we're still on track to bring him home around the end of February.

When I spoke to Nurse Shawna today, she mentioned that there was some discussion of Cayden's hernias during rounds this morning.  The docs aren't convinced that they're true hernias - they may be something called a hydrocele, which is just fluid in the space rather than actual intestines.  This is good news!  Fluid will eventually be absorbed by his body and won't require surgery.  I'm keeping my fingers crossed that this is the case!

Also, I wanted to mention that as of last Thursday, baby Bianca was stable and doing well.  I haven't gotten an update from her mom since then, but it sounds like the RSV just has to run its course but that she should be o.k. 

And speaking of RSV, yesterday Cayden was given a shot of Synagis, which is a vaccine to prevent RSV infection.  It's given monthly through the RSV season (October-April) to babies who meet the criteria.  I don't know why they waited until now to start giving it to him, but he more than meets the criteria because his birth weight was so low and because he has a snotty-nosed brother at home waiting for him!  (Having a sibling under a certain age is one of the criteria.)  I'm not sure, but I don't think Bianca got the vaccine.  Hopefully this will keep Cayden from having to go through the same ordeal.

As of last night, his weight was up again - 5 lbs. 2 oz.

I forgot what I was going to say

Earlier today, I had something in mind to write about for today's post, but my mind has been hijacked by thoughts about and concern for another baby.  My former NICU mom-friend, Jessica, who took her baby, Bianca, home just a couple weeks ago, had a terrifying experience last night.  Jessica found Bianca cold and blue.  She had stopped breathing.  She managed to resuscitate her by rubbing her back - the first time.  She stopped breathing again as they were rushing to the hospital but Bianca didn't respond the second time, so she had to do CPR on her until they got to the ER.  Thankfully, she is stable now, but she's intubated and back in the hospital, diagnosed with RSV (Respiratory Syncytial Virus, a virus that causes mild, cold-like symptoms in adults and healthy children but can be serious in babies, especially preemies.) 

Words can't describe how upset I am - for Jessica and what she went through, but also by the sobering reminder of how fragile our preemie babies are and will be even after we take them home.  I just can't get it out of my head.  I know so many of you have been praying for Cayden to do well, but if you wouldn't mind adding a prayer for Bianca's sake, I'm sure her mom would appreciate it.

The biggest news from Tuesday is that Cayden took two full bottles during the night.  Considering he's only been doing this bottle thing for a couple of days, that's amazing progress!  Thankfully, he is still doing well at actual breast feeding too.  Another tidbit of news is that they switched the type of machine that delivers his oxygen to the low-flow cannula.  It will allow the nurses to more precisely control the amount of oxygen he's getting.  The switch was made out of concern for his eye exam results.  When a baby gets too much oxygen, it can lead to an increased likelihood of developing ROP, so they want to be sure he doesn't fluctuate into the high end of oxygenation, which he has been doing in the past.

Tuesday night, he gained two more ounces, weighing in at 4 lbs. 10 oz.

Today (Wednesday), due to other appointments I had during the day, I visited Cayden early in the morning and was barely able to stay a couple hours.   He breast fed and did well and has taken two more bottles as of this evening.  His weight was up another ounce, so he's now 4 lbs. 11 oz.