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!

Rooming in

Forgive me if this post is somewhat incoherent, but I'm operating on even less sleep than usual after having spent the night at the hospital, sharing a room with Cayden.

Honestly, though, he did great.  He's sleeping between 4 and 5 hours between feedings (from the start of one to the start of the next) which is amazing, but factor in that it takes him a good 40 or more minutes to take a bottle, then I have to pump for 30 minutes, then wash everything and try to fall back asleep while being hyper alert to his every noise, it doesn't leave much time for me to actually sleep!

I arrived at the hospital around 6:45 on Sunday night but he was snoozing away.  He didn't wake up until about 9:15, but then he breast fed and took a good bit from the bottle as well.  We moved into our private room around midnight.  He was hooked up to the monitors and oxygen so the nurses could watch his stats on their screen in the main area.  There was a surprisingly comfortable queen-size bed, a sink, a rocking chair, and a fridge for milk, but that's about it.  No bathroom, no TV, no fridge for your food or room service in case you might want to eat something while you're there.  If you need to go to the bathroom or leave the room for any reason, you have to call the nurse to come sit there while you're gone.

Anyway, he woke up again around 2 and then at 7 in the morning.  I fed him a bottle both times but didn't breast feed him on the nurse's advice.  (He gets more calories doing less work by taking a bottle, which means he'll sleep longer and gain more weight.)  We didn't have any choking or desat episodes all night, and he slept very soundly, thank goodness!

Nurse Shawna came in on the day shift and rolled him back to his pod around 10:30 in the morning.  I was starving and hoped to run down to the cafeteria to grab a bite to eat at that point, but as soon as I got dressed, I went to check on him and got bombarded with activity.  First, they told me that the docs had just done rounds and said that he would be discharged on Tuesday.  This sent me into a tizzy of panic - we had told them that Tuesday would be pretty much impossible to take him home because Jason HAD to be out of town for work that day and there was no way I could do it myself.  I thought we had it straight that they wouldn't discharge him until Wednesday?!  After about 20 minutes of anxiety, Nurse Shawna said she cleared it up with the docs and that they would be able to wait until Wednesday.  Whew!

Now can I get something to eat?  Nope.  Developmental therapy had just arrived and I needed to be there to work on Cayden's exercises with him.  I haven't had much practice with him as he's gotten bigger, so I really needed to go over the exercises to make sure I know how to do them properly.  So we did some tilting, tucking, rolling, and stretching for about 30 minutes. 

Maybe now I can go get some breakfast?  Nope.  Now it was time for Cayden to eat breakfast (again!)  I wanted to take the opportunity to breast feed him before I left for the day.  So he nursed for 40 minutes.  Then he took a bottle for 20 minutes.  Hungry boy!

Food for momma now?  Nope.  The resident showed up and barraged me with facts and questions about things related to discharge.  By this point, I was deliriously hungry and tired and nothing was sinking in, but I managed to scribble down some notes on a paper towel and hoped I got it all straight.

I made phone calls to Jason and to set up our first pediatrician appointment and FINALLY escaped to the cafeteria for lunch (I had long since missed breakfast!)  Grabbed some food and headed back to the rooming in room to scarf it down while packing up my stuff there. 

After inhaling some food, I went back to Cayden's pod with my suitcase and packed up some of the things he could live without for the next two days.  While I was there, Nurse Shawna was putting in his eye drops for his bi-weekly eye exam and rambling on about more things I needed to know and do from the discharge checklist.  Apparently, he had and passed his hearing screening exam at the beginning of February.  Yea!  She set up a consult with the home oxygen company for Wednesday.  She rattled off a list of prescriptions I'd need to get filled before discharge and reminded me to buy a supply of specific Dr. Brown's bottles and nipples.  She showed me how to mix up his breast milk recipe.  She mentioned they'd be doing his car seat challenge later that afternoon.  He has to sit in his car seat for 90 minutes while they make sure he doesn't stop breathing.  I guess they can have a tough time with it because they can slump down or sideways while sitting there which can cut off their oxygen just enough to cause problems.

I finally left the hospital around 1:45.  I needed to swing by work since it would likely be the last chance I'd have to tie up loose ends there before Cayden comes home.  That was tough to do:  I am officially done with working (for a paycheck, at least) until further notice so I can stay home to be a full-time nurse and mommy.

Later in the evening, I found out that Cayden passed his car seat challenge and his eye exam came back unchanged (no evidence of ROP, zone III in one eye; stage 2, zone III in the other).  We'll need to follow up at the outpatient clinic again in two weeks. 

All he has to do now is keep nippling enough (a minimum of 380 ccs in 24 hours), gain weight (he hadn't been weighed when I checked in Monday night, but as of Sunday, he was up to 7 lbs. 1 oz.), and not have any more 'significant' bradys or desats, and we'll be on our way home on Wednesday!

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!

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.

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.

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.

35 weeks!

As of Monday, Cayden would have been/is still considered 35 weeks along.  I've been thinking about how things should be right now - I should be hugely pregnant, getting excited that our baby would be here soon, and wondering when it would happen - day or night?  Would my water break in an inconvenient place?  Would he make it to his due date (February 28th, which is also our pseudo-anniversary, seeing as how we got married on Leap Day)?  I thought it would be kind of neat to have a baby for an anniversary present.  Guess I don't have to worry about any of that stuff now.  Maybe we'll get to bring our baby home for an anniversary present?

The big change on Sunday was that the docs decided to bump him up from 24 to 26 calorie supplement.  If he can tolerate it this time, hopefully it will help him pack on some more weight.  On Sunday, he finally gained some, up to 4 lbs. 7 oz.

Monday was an eventful day as well.  They increased the amount of breast milk he's getting at each feed from 35 ccs to 40 ccs.  I got to the NICU around noon and breast fed him.  He is doing so well with it!  This time, the scale said he ingested 11 ccs, which is reasonable.  After his noon feeding, Nurse Carrie gave him his eye drops to dilate his eyes for his bi-weekly eye exam, then we did some developmental therapy:  leg scrunches.  The therapist wanted to take it easy with him since he was having the eye exam soon.  After therapy, we snuggled up until I had to leave around 4:00.

Dr. Braverman did his eye exam after I left.  I called later in the evening to get the results, but despite the nurse's best efforts to explain them to me, I still had to consult my Preemies book for an interpretation.  Results are given for each eye in two parts:  stage and zone.  The stage ranks any developmental abnormalities on a scale from 0-5, with zero indicating no evidence of ROP and 5 being severe ROP.  The zone describes where it is happening.  The retinas develop from the center of the eye outward.  Zone I is in the center, where the blood vessels develop first.  Zone III is where the blood vessels develop last, around the outer edges of the retina.  Cayden's results were right eye: stage 0, zone III; left eye: stage 2, zone II.  So the right eye is in the clear, so to speak.  The blood vessels have pretty much fully developed and there is no evidence of ROP.  The left eye is still developing and showing mild signs of ROP, but according to the doctor, it's nothing to be concerned about at this point.  My book goes on to clarify that while the vessels are still developing, ROP can reverse itself and go away.  So since his left eye is still developing and showing only mild ROP, there's a good chance it will correct itself as it finishes developing.  If he comes away from this experience with no ROP, it will be one more big hurdle we've overcome and one more miracle we'll have witnessed.

And for one more dose of good news, he gained another ounce at his weigh-in Monday night.  He is officially 4 1/2 pounds!

An eventful day

So much happened yesterday!  I showed up to the NICU just in time to do physical therapy with Cayden.  The therapist, Elizabeth, decided that he's now big and stable enough to do his therapy outside of his isolette, so we started by me picking him up, holding him close, and just swaying with him in my arms.  Before we got any farther, we took a quick break - the doctors had just given the respiratory team orders to change his oxygen to a low-flow cannula!  So I sat down and held him while they swapped out his equipment.  The new cannula is slightly smaller and now he's breathing all of his own effort with just some supplemental oxygen mixed in.

After the switch, we resumed therapy but decided to take it easy given all of the stimulation he just had by the respiratory therapists.  He laid on my lap with his head toward my knees while I rolled and relaxed his shoulders.  I guess a preemie's natural tendency is to scrunch up their shoulders, so the idea is to manually release the tension in those joints.  Next, we did some self-soothing practice:  putting his hands to his mouth, then putting each hand to his hair.  We ended with a nice massage up and down the side of his body from shoulder to hip.

It's a good thing he was nice and relaxed because as soon as we finished, the eye doctor (I'm not sure if she's an opthamologist, a neonatologist, or both) showed up to do his bi-weekly eye exam.  Nurse Zoe had dilated his eyes earlier in the afternoon in preparation and the exam took just a minute or two, but they told me I might want to step out of his room because "it isn't a very pleasant exam to watch."  It isn't painful, but apparently they use fork-looking instruments to hold his eyes open so they can shine a bright light in to look at his retinas.  I stepped outside to get some water and came back just a little too soon - I stood outside his curtain but heard him let out a cry of protest.  As I stood there feeling helpless and horrible and starting to cry myself, Jessica (the other NICU mom I met at the parents meeting in November) saw me and came over to give me a hug.  After just a few seconds, Cayden had stopped crying and they told me they were all done and I could come back in.  Before I went back in, I said goodbye to Jessica - she and her baby, Bianca, were being discharged!  Bianca was born at 28 or 29 weeks and was going home before her 39-week birthday.  I am so happy for them!

The results of the eye exam were the same as last time but encouraging:  his retinas are still not fully mature, but at this point, there is no evidence of ROP.

The last change of the day was an increase in his feedings to 33 ccs every three hours.  Now that he's getting bigger, he needs even more food to maintain his growth.

Eye exam

Cayden had his first eye exam today.  ROP (retinopathy of prematurity) is one of many possible complications preemies face.  The blood vessels of the retinas don't completely develop until just before birth in a full-term baby.  After a premature birth, they may not grow as planned.  If the retinas don't develop normally, it can lead to something as mild as a lazy eye or nearsightedness to something as severe as blindness. (Stevie Wonder's blindness is a result of ROP.)  Anyway, Cayden's exam showed that his retinas aren't yet fully developed but that so far, there aren't any signs of ROP.  He will have an exam every two weeks until his retinas are fully developed, so we're not out of the woods yet with ROP, but so far, so good.

In other news, at his noon cares today, Nurse Shawna didn't like the look or feel of his belly and she thought he looked a bit pale.  She mentioned it to the docs and they decided to play it on the conservative side, thinking maybe he wasn't tolerating the recent increase in calories, and dropped him back down to 24 kcal supplements for now.  When she did his 3:00 cares, she thought he looked better and by 6:00, better still.  I just spoke to the night nurse who did his cares at 9:00 and she said she thought he looked good, his belly girth was good, and he had good bowel sounds, so hopefully it won't be an issue.  I also just read something in my book, Preemies, that said, "After the eye exam, don't be surprised if your baby has a big tummy for a few hours or doesn't tolerate her next feeding.  [It can be] a fleeting result of the medicine in the dilating drops, which can slow down the movement of gas and food in a baby's gut."  Given all of the information, I feel pretty confident that this episode shouldn't be a big deal.

His weight had dropped a bit last night (down to 2 lbs. 13 oz.) but tonight it was up to 2 lbs. 15 oz.

Since I see him every day, sometimes it's hard for me to see the big changes in him. I see and am aware of the little changes that happen day to day, but the overall change doesn't seem as drastic to me.  My friend, Sue, came to visit us in the NICU this afternoon.  She hadn't seen him since very soon after he was born so when she saw him today, she was happy and surprised to see how much better he looks.   It's comforting to be reminded that in the past month, there has been such improvement.