Tiny hand

Tiny hand
November 20, 2010 (one day old)

Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Tuesday, March 29, 2011

Mr. Fuss

Cayden is going on 24 hours without a good stretch of sleep.  I don't think he's slept for more than 30 minutes in his crib.  About the only way we can get him to sleep is if he is laying on someone's chest or if I have him in the Baby Bjorn front carrier.  Otherwise, he just shrieks and cries and grimaces and writhes and looks completely miserable.  I'm hoping it's just a temporary reaction to another vaccination he had yesterday afternoon.

A nurse came to our home to administer his last shot of Synergis for the season.  She weighed him - he is officially 8 pounds! - and did a brief exam as well.  She was friendly and talkative and seemed competent enough, but when she left, I about passed out when she bent down and kissed him on the cheek.  I was completely speechless and it was all I could do to not shriek and smack her upside the head.  The woman should know that you don't TOUCH anyone else's baby, especially a preemie, without washing your hands, let alone put your nasty germ-laden lips all over one!  I don't know if I'm over reacting to this or what, but I am seriously considering calling the agency to tell them what she did.  It just horrifies me that a pediatric health care professional would administer a vaccination to a preemie so that his chance of catching a life-threatening virus are reduced, then turn around and potentially expose him to whatever she may have been in contact with.  Unbelievable!

In other news, I saw the official email that went out at work today announcing that I won't be returning any time soon because I need to stay home to take care of my family for now.  As of Friday, I will officially be unemployed.  I don't know why I'm having such a hard time with it.  I always thought it would be awesome to be a stay-at-home mom, but I am absolutely panicked at the thought of giving up my career.  My hope is to return in a year or so, once Cayden's immune system is mature enough for him to go to daycare, but I'm just having a really hard time letting go for now.  I've never been good with change, especially change that I don't have much of a say in.  I guess I just have to trust that things will work out and rely on the 'everything happens for a reason' faith.

Saturday, March 26, 2011

An extra pair of hands

We've had some much needed, much appreciated help since Tuesday when my cousin Jennifer flew in from Pittsburgh to help us out for a few days while Jason is out of town for work.  She's been a lifesaver, stepping in and doing everything like only a pro, mother-of-four can do.  She's been helping us establish a more consistent routine with Cayden, even getting him to sleep his longest stretches of four to five hours during the night so that I can get a bit of sleep.  It's been so wonderful having her around!

We've had a couple more doctor appointments this week.  One was a consult for Cayden's hernia surgery, which we scheduled for May 9th.  While we were there at Children's Hospital, I met with one of the Children's lactation consultants to discuss the outlook for breast feeding Cayden.  I've gotten the feeling from our pediatrician that she's not optimistic about the likelihood of continuing to nurse long-term.  My hope is to be able to nurse exclusively so he can get the benefits of breast milk without my having to pump and then fortify and thicken it, but because of his reflux, that may be difficult.  The lactation consultant was very supportive and gave me some pointers for reaching my ultimate goal.  So we're trying the things she suggested and we'll see if we can get rid of all of these extra complicating things like the pump, bottles, formula, thickener, etc.  Life will be so much easier if I can just nurse him and not have to worry about all of those other things!

On Friday we went back to Dr. Stanford, our pediatrician, for another weight check.  Cayden was up to 7 lbs. 12 oz!  She's happy with that amount of weight gain and we're only going to continue weighing in as I start to nurse more often to make sure he's still gaining enough without the caloric supplementation.  Other than that, we don't have another appointment with her until May 2nd for his 6-month visit.  She was going to order a pulse-ox machine so we could do a 12-hour room air challenge at home to determine if maybe he can come off of his oxygen, but I inadvertently talked her out of it by letting her know that I didn't expect him to be able to come off of it so soon, given that the NICU docs said to expect him to be on oxygen a good six months or so.  Although dealing with the oxygen at home is a pain, I'd rather be safe than sorry.

The increased dose of Prevacid that Dr. Stanford prescribed seems to be doing the trick as well.  Cayden hasn't been spitting up and doesn't seem as uncomfortable after eating.  Here's hoping the little guy feels better and that we can soon put all of this reflux stuff behind us!

Monday, March 21, 2011

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!

Friday, March 18, 2011

Doctor, doctor

Just back from our third visit to the pediatrician in eight days.  Today's primary purpose was for Cayden's 4-month vaccinations but they also did a weight check.  Although he was up two ounces from Monday, Dr. Stanford wants to see him again in a week.  If he had gained more, we wouldn't have to go back for a month.  As of now, he weighs 7 lbs. 7 oz. and he seems to be eating well over the last few days, but he seems so uncomfortable and miserable after he eats.  Poor little guy.  Reflux sucks.

This afternoon, we're getting a visit from a home nurse.  I'm not exactly sure what all she's going to do, but I think the main purpose is to check in, assess how Cayden is doing, and decide if we qualify for more frequent visits.  I'm hoping maybe we'll get some consistent help, especially during times when Jason is gone.

Speaking of help, we've been blessed with meals from Colorado Community Church every other day for the past week.  My friend and co-worker, Rachel, signed us up for their Prepared Meals Ministry that she participates in.  Once again, I am overwhelmed at the kindness and generosity of people - total strangers in this case.  We are so thankful!

Thursday, March 17, 2011

A week already?

I can't believe it's been a week since we brought Cayden home.  It's all a blur.  I don't know day from night, up from down, Monday from Friday.  It's like there's no end to a day, just the same cycle over and over. 

I know many of you have been hoping for more frequent updates on how we're doing, but I just can't find much time to type anymore.  I used to type while pumping.  Today, I took my multi-tasking to a new level:  I bottle fed, burped, then held Cayden upright while pumping.  There just isn't enough time to do it all unless I find new ways to contort my body and do three things at once.

Jason was out of town for 16 hours today and I managed to get through the day on my own.  Jamison had daycare for half of that time so that helped, but during the time I had both boys at home, it was pretty hectic.  I actually laughed out loud at one point:  I was thinking about how I miss going to the gym and working out, but then realized my heart rate was in the fat-burning zone for several hours throughout the day (racing up and down stairs in our 5-story house will do that to you).  And I get plenty of weight lifting reps from heaving Jamison up and down the stairs, in and out of his crib, off and on the changing table.  I'm even getting some pilates-type isometric exercises in.  Try holding a 7+ pound baby up in the air in front of you for 20 minutes with one arm while holding a bottle steady in his mouth with the other arm without anything to rest on.  Or try holding your knees together, legs bent, while resting your toes on an ottoman and supporting that 7+ pound baby on your thighs to keep him upright.  Build core strength and dexterity by reaching for a sippy cup on the floor with your foot, then balance on your tailbone while picking it up between your two feet, lifting your feet and the cup vertically in front of you and dropping it on the tray of the high chair your toddler is sitting in while your arms are occupied holding and bottle feeding the baby.  I kid you not.  These are just a few of the things I did today!

As for Cayden, he seems to be doing o.k.  Maybe going through a growth spurt?  Yesterday he drank over three ounces more than he's ever consumed in one day.  He was hungry every 1.5-2 hours and ate 11 times over the course of 24 hours.  Today was a bit more stable but he's still a hungry little man!  In fact, he's waking up right now and that means I must sign off for now. 

Thursday, March 10, 2011

Home sweet home

Well, we made it through our first 24 hours.  It's been pretty hectic.  There is so much to do and barely enough time to get it all done before the next round starts.  We're having to make up a special concoction of fortified breast milk with Simply Thick added for Cayden to drink from a bottle.  Mixing it up takes a good 10 minutes, then it has to be heated for another 5.  Once or twice a day, he breast feeds for 15-30 minutes.  After that, he takes a bottle for another 15-30 minutes.  If he's only getting a bottle that round, he can take up to 45 minutes to drink it.  Then we have to hold him upright for at least 30 minutes to help prevent his reflux.  Then we can lay him down, but I have to pump for another 30 minutes.  Then we have to wash bottles and pump parts.  The whole cycle takes a good 2.5 hours.  Cayden was going five hours between feeds before he left the hospital but we've been averaging about 3.5 since we've been home. 

Last night, we kept him in the bassinet in our bedroom.  He coughed and gagged and choked and spit up all night long, so I was constantly checking on him.  Jason slept in the room until about 2:20 but then left to go to our guest bedroom so one of us could at least get some sleep!

Surprisingly, I've been too overwhelmed and busy to worry about what I thought was going to consume my every waking moment:  is he breathing and is his heart rate ok?  It's funny.  When you're at the hospital you have the monitors to alert you if his breathing or heart rate drops.  I guess some parents focus on the monitor constantly but I got to the point where I didn't really think about it unless it alarmed.  Well now that we're home and we don't have a monitor, there is nothing to alarm me so I don't really think about whether or not there might be anything wrong.  I do have to admit, however, that in the rare moments that I am away from him in another room for more than 5 minutes, I run back to check on him.

We had the home oxygen delivered last night.  There is a giant cylinder lying flat on the landing outside our bedroom with a 50-foot coil of tubing attached to it so we can wander around our 5-story house.  Apparently, they are currently out of stands for the cylinders but will deliver one as soon as one becomes available.  Seems pretty dangerous to me.  I know that in the lab, fire code dictates that all gas cylinders must be chained or somehow secured to a wall.  Guess that doesn't apply to home use??  It really is a pain and it's going to be a constant battle to keep from tripping over it and the tubing, and to keep the cat and Jamison from playing with them.

I am so thankful that Jason is home to help.  There is literally no way I could do all of this by myself AND take care of Jamison.  My biggest anxiety now is how the heck am I going to pull this off once he goes back to work (which may be sooner rather than later.)  I'm hoping that after a few more days we'll find some sort of routine and figure out the short cuts if there are any to be made to get it all done.

We haven't taken Cayden very far outside of the master bedroom, but it appears that Jason has ventured down into the family room while I've been pumping.  Cayden sleeps best when he's being held upright, so I think they're getting cozy on the couch . . . better go check and see how they're doing! 

Tuesday, March 8, 2011

24 hours from now...

...our entire family, all four of us, will be under one roof.  OUR roof.  For the first time in 111 days. 

I spent four and a half hours at the NICU today and every minute, there was someone talking to me, reassuring me, filling my head with information, things to remember, things to do, things not to do.  I talked to the nurses Carrie and Kathy, Annie the fellow, Carrie the resident, Freida the developmental therapist, Virgina the lactation consultant, and Pam the discharge coordinator.  The good news is that I do feel better, more confident that he should do o.k. when he comes home. 

I got explanations from the docs about a couple of major concerns I had regarding Cayden's recent bradys and ability to ingest enough calories now that he's having to get it all of his own effort.  Yes, his heart rate dropped and his oxygen saturation decreased - once while feeding and once while sitting in a swing - but the fact that he was able to bring himself out of the bradycardia episodes without intervention is what matters.  Nonetheless, the docs said to avoid using a swing for now.  And he has just barely been meeting his minimum feeding requirements, but he has been gaining weight since they took out his NG tube, so again, that is what matters.  I just called to check on him for the night and his weight is up to 7 lbs. 3 oz.  He is going home weighing just two ounces less than Jamison weighed at birth - amazing!

We got prescriptions for medications.  I went to have one of them filled as soon as I left the hospital and found out that it requires compounding by a special pharmacy and will take two days to make.  Of course, that special pharmacy was closed by then and it's going to be another thing we have to squeeze into our already busy day tomorrow.  The Simply Thick we'll need to use is only sold at two pharmacies in the entire state.  I can order it online directly from the manufacturer, but who knows how long it will take to get it shipped.  One more thing to figure out how to handle in the next 24 hours!

We got instructions to make follow up appointments for his eye exam and hernia surgery, got handouts and took video of the therapy exercises, and brought home a HUGE bag full of expressed milk from their freezer.  The 15 cubic foot chest freezer we bought soon after Cayden was born is literally filled to the rim with breast milk.  Maybe I should get in on that new breast milk ice cream business that is the buzz all over the news lately??

Tomorrow is going to be even busier than today.  We have to figure out these prescription issues and get to the hospital as early as possible to be able to complete the discharge process.  Our angel of a daycare provider, Mayra, has offered to keep Jamison as long as we need to get home and settled with Cayden tomorrow, so that takes some pressure off.  I can't believe how different things will be this time tomorrow night!

So once we're home, I'm anticipating the worst:  isolation, sleep deprivation, and no time to do anything but feed the baby, pump, wash pump parts, and maybe shovel a bite of food down my own gullet.  I wonder how Jamison will react?  Will I have any time to pay attention to and take care of him?  When will I ever be able to shower again?  How is it going to work with home oxygen in our five-level home?  These are just some of the questions cluttering my mind.

The good news - and I am SO thankful for this - is that Jason made it home tonight at a reasonable hour, so we will both be able to hit the ground running in the morning. 

I'm hoping to continue to update this blog even after Cayden is home, but I don't want to make any promises about how often I will be able to do so.  Maybe once a week or so is reasonable?  We'll see!

Thank you to everyone who has followed along on our journey through this blog.  Thank you to everyone who has prayed, cooked or brought food over, stayed with Jamison, or just offered to do any of those things.  We couldn't have made it without your help.  It may be a year or more, but I look forward to the day when our lives get back to normal, when we can socialize with friends and have people over, and we will celebrate the miracle of Cayden's life and the treasure of good friends and family with one HUGE party!

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!

Saturday, March 5, 2011

Nice to meet you, Grammy and Aunt Karin!

Jason's mom and sister came from Arkansas for a short visit this weekend and today was the first time they got to see Cayden in person.  They took turns holding him and I think he enjoyed spending time with his family.

Before they got to the NICU, the developmental therapist was doing another evaluation, this time with a 3/4 strength Simply Thick concoction.  He took about half a bottle for her and didn't choke at all even though it's slightly thinner than he's used to, so she deemed it a success and gave the go-ahead for making the switch.  Again, the thinking is that if he doesn't have to work as hard to pull thick stuff through a nipple, he will burn less calories and gain more weight.

About an hour after taking the bottle, Cayden was resting in his crib and started fussing.  I went over to see if he wanted his pacifier but he wouldn't take it.  He looked really distressed and uncomfortable.  I heard his stomach gurgle and then he spit up, twice.  Although his sats never dropped, he sounded like he was really choking and struggling to breathe and it was terrifying to watch.  Needless to say, we won't be switching to 3/4 strength Simply Thick any time soon.

Nurse Kathy said that I should be ready for Cayden to come home as soon as Monday or Tuesday despite his feeding issues and two brady episodes yesterday.  I was shocked and said, "Monday, as in two days from now??!"  She said yes - the brady episodes wouldn't "count" because one was feeding related (if he chokes while feeding, as long as I tip him forward and pat his back, he should recover just fine) and the other was positional (the nurse had him in a swing and didn't have his neck supported to keep it from tipping forward, which is apparently what happened.) 

I'm sorry.  Everyone knows how anxious I am to bring him home, but I do NOT feel comfortable with all of these issues yet!  I am scared to death watching them happen in the hospital with monitors and doctors and nurses there to handle the situation.  How am I supposed to be able to handle this at home, without monitors, doctors, or nurses to help and reassure me that he is o.k??  Honestly, I'm hoping it will be later in the week before he comes home and that he can at least go a few days without any of these scary episodes.

There is one more thing that can delay his homecoming:  they pulled his NG feeding tube today and are trying the ad-lib feeding approach again.  He has to wake up on his own and take a minimum amount of milk in a 24-hour period.  If he doesn't meet that minimum, they'll put the tube back in and start gavaging him as necessary.  So we will see what happens. 

He did gain weight again tonight, 7 lbs. 0.9 oz, so he just may make it with the ad-lib gig this time!

Exciting news!

It's been a few days since I've been able to update the blog and a lot has happened in the last 24 hours.  I didn't have much in the way of interesting news to report on Tuesday (I filed Cayden's nails for the first time) or Wednesday (I got projectile vomited on) but then all of a sudden Thursday and Friday turned into whirlwind roller coaster days.

On Tuesday, Nurse Shawna mentioned that we needed to watch the CPR training video sometime soon.  It's on the checklist of things that need to be completed before a baby goes home, and she thought that we should do it soon because Cayden had been progressing well.  It was the first inkling I got that we may be starting to get close to actually bringing him home.

Since Wednesday, there has been some experimentation with his feedings.  The Simply Thick seemed to be clogging the tubing on the gavage pump, so they decided to try one feeding without the thickener to see if maybe Cayden had progressed to the point of not needing it.  It went in and he seemed to be tolerating it well until about an hour later - that's when he woke from a dead sleep and spewed milk all over me.  So much for being able to get by without the Simply Thick.  The new plan was to change out his NG tube because they thought maybe the connections were causing the clogging, so that was done on Wednesday evening.

The developmental and speech therapists also did two more nippling evaluations to see if the size of the nipple on his bottle feeds could be changed.  He had been using a level 2 nipple, but because the milk is so thick, he really has to suck and work hard to get it out.  The thought was that if they changed to a level 3 nipple with a slightly larger opening, he wouldn't have to struggle as much.  The first time they tried the level 3 was Wednesday, right after he had a therapy session.  He was pretty tired and not able to handle the increased flow, so he choked.  They thought maybe they'd give it another shot the next day when he was awake and alert and not so tired.  The second time, on Thursday, he did just fine so they came up with a plan to use the level 2 nipple after breast feeding or therapy sessions and use the level 3 all other times.

Also on Thursday, Cayden set a personal record for breast feeding:  he took 46 ccs in a marathon, 40-minute session!  I was feeling pretty positive after that but it got better:  they told me the docs wanted to do a room air challenge test on him.  I was surprised because I thought that was something they did just before sending him home, and there hadn't been any mention of it or any other discussion about him possibly being ready to go home, outside of being told we needed to watch the CPR video at some point. 

The most exciting news of the week is that he passed the room air challenge!  That meant the only other hurdle in his way was being able to nipple all of his feeds, but he had been gaining huge ground in that area as well.  In fact, in the previous 24 hours, he had taken 93% of his feeds by nipple!  So when I left the hospital on Thursday afternoon, I was pretty excited!

When I called to check on him Thursday night, Nurse Megan told me I should really think about rooming in with Cayden at the hospital one night over the coming weekend because it was looking like he could be coming home very soon.  Rooming in is another thing that's supposed to happen right before a baby goes home.  They move the baby's crib into a private room with the oxygen, monitors, and a bed for the parent(s) and give the parent(s) a chance to handle caring for the baby all on their own for 24 hours, but with the nurses constantly monitoring things and available if needed.  So when I went to bed Thursday night, I was really excited!

Jason and I both went to see him on Friday afternoon.  Nurse Shawna was gung-ho about him being very close to going home.  One other hurdle that came to mind for me to ask about was the hernia repair issue.  She said that they had evaluated him and decided that the repair should be done later, when he's about 10 weeks past his due date, so there wouldn't be any imminent surgery to delay his discharge.  With that in mind, she said I needed to get on the ball with learning to prepare his formula, practicing bottle feeding, and rooming in with him.  She made a reservation for me to room-in this coming Sunday night.

After this encouraging conversation, I sat down to breast feed him.  He had just had a therapy session.  He did o.k. for about 15 minutes but then seemed to get tired.  Nurse Shawna wanted me to bottle feed him the rest of his amount so I could get some practice with the bottle as well.  She handed me a prepared bottle and coached me through getting him started sucking.  Within 20 seconds, he started choking.  I sat him up, leaned him forward, and patted his back, but it didn't seem to help.  He started desatting, then his heart rate dropped.  I kept patting, but he was really choking.  The monitor made that sickening sound where it spirals down in tone as his heart rate drops lower and lower.  It got down lower than it has in months and took him a good five minutes to recover. 

Once he was stable and I was able to compose myself, I asked what nipple she put on the bottle because it seemed like he got flooded right away.  Sure enough, it was the larger-holed level 3.  Apparently she didn't get the memo about not using the level 3 after breast feeding or therapy sessions.  The fact that he had such a significant brady episode will keep him from being able to go home for at least five days.  (He has to go five days without any episodes as part of his discharge criteria.)

After he finished his feeding, Jason held him and we watched the CPR video.  I couldn't stop thinking about my NICU-mom friend, Jessica, and how she had to perform CPR on her little Bianca so soon after they discharged her.  I hope and pray we never have to go there. 

When I called to check on him again this evening, the night nurse said he had been fussing earlier in the evening so they put him in a swing to see if that would help soothe him.  It did seem to help, but then he had another significant brady episode while in it.  It could be that his head wasn't supported well enough and that his neck dropped down a bit, blocking his airway just enough to cause him to desat and brady.  Whatever the cause, it's not good that it happened - again.  Twice in one day.  Despite all of this, they are going to try taking out his NG tube again tomorrow to see if he can sustain himself without it. 

Talk about a roller coaster!  I am so exhausted trying to keep up with the events of the past couple of days.  But hopefully things will get sorted out and back on track and we really will get to bring him home very soon!

And speaking of roller coasters...his weight has been up and down:

Tuesday night, he was down 23 grams from the previous night.
Wednesday night, he gained back 24 grams.
Thursday night, he had a big gain to put him at 7 lbs. 0.7 oz.
Friday night, he dropped back down to land him at 6 lbs. 15.5 oz, which is less than he was to start the week on Monday.