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.

The best medicine

I went to see Cayden yesterday despite still being sick.  I took a couple Advil and I think they masked my symptoms enough to make me think I felt well enough to go.  But the Advil did nothing compared to getting to see and hold my little man.  That is truly the best medicine.  I know it was selfish to go, but I was very careful about donning a mask and scrubbing my hands and arms all the way up to my elbows. 

When I arrived at 3:00, he was pretty zonked out - he had a bath just a couple hours earlier and I think it wiped him out.  He showed no interest whatsoever in breast feeding, so the nurse hooked him up with a gavage feeding while I kangarood with him.  We tried again at his 6:00 cares and although he was more awake and alert this time, he only latched and sucked for maybe 5 minutes.  Nonetheless, the scale said he got 8 mls, so it was worth the effort. 

As of Saturday, they increased the amount of his feeds again.  Now he's up to 44 ccs of 26 calorie-fortified breast milk.  I think all of these increases are starting to pay off - he weighed in last night at 5 pounds 1 ounce!

I don't think I'm going to go in to visit him today.  I'm back to feeling pretty cruddy and with Jason leaving town again early tomorrow morning, I think it'll be best for everyone if I stay home and try to conserve what little energy I have for the week ahead.  It makes me so sad to think about missing him for just one day, but hopefully I can see him on Monday.

Down with the sickness

I had to miss going to see Cayden on Friday because I'm sick.  The sore throat I started getting on Wednesday night has grown into full-blown misery, and there is just no way I could have dragged myself to the hospital despite how much it hurt not to be able to go. 

I got updates via phone throughout the day:  the endocrine doctor came by yesterday and said Cayden's TSH (thyroid stimulating hormone) levels were actually within range for his age and size, so there is no need for concern there.  Whew! 

When I spoke to Nurse Shawna, one of his primary nurses, she was surprised to hear about the hernias.  She had never seen them, so she talked directly to the attending doctor about them.  The doc said they're both very small and virtually undetectable unless Cayden is bearing down (as in if he's trying to poop or if he's angry), but that they will still likely require surgery to repair.  They will consult with us in the next couple of weeks to discuss whether we want to have the surgery done before we take him home or if we want to wait until he's a little older to do it.  The good news is that the surgery is done with a spinal block and won't require general anesthesia.

As of his Friday night weigh-in, he was up another ounce to 4 lbs. 15 oz.

Chub-a-love!

Cayden gained three ounces Thursday night!  His weight is up to 4 lbs. 14 oz.  I'm so proud that he's putting on weight even while bottle and breast feeding.

Thank you to my friends, Mark and Andrea, who came to babysit a coughing, snuffly Jamison so I could go see Cayden tonight.  I, too, started feeling under the weather Wednesday night.  My throat was a bit scratchy and sore, but after discussing it with the day nurse, I decided to go ahead and visit.  Because I'm not running a fever, she said it should be o.k.  I just made sure to wear a mask over my nose and mouth and scrubbed the heck out of my hands.

This evening, I was informed by Nurse Megan that they've been watching and discussing a few things in rounds:  apparently, Cayden has an umbilical hernia and an inguinal hernia and there will be a surgery consult sometime in the next few weeks to discuss the plan to repair them.  Also, they're following his thyroid levels which have been high, and may suggest an endocrine consult.  Although none of this is stuff I want to hear, they are comparatively minor things to deal with when you consider all of the other, more serious hurdles that preemies face.

I'm not sure if I'll be able to make it to the NICU tomorrow and it's really bumming me out.  This sore throat seems to be intensifying, and I don't want to take any chances.  I was hoping it was just allergies or the dry air, but now I don't think so.  :-(

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!

Holding steady

It's been a few days since I've been able to post an update - sorry, Gramma!  I know you look forward to reading this every day.  Many people are amazed that I have the time to write with all that's going on.  Well, I'll let you in on a little secret . . . I type while I'm pumping!  Seven times a day times thirty minutes each session strapped to a machine gives me plenty of time - usually.  This past week while Jason was gone and I was on my own with Jamison, I had a tough time entertaining/distracting/occupying him while I pumped, so it was hard to get on the computer like I usually do.  I'll try to catch everyone up on the happenings over the past few days . . .

On Thursday, one of the nurses accidentally gave Cayden a bottle.  The plan was to wait to introduce a bottle until we were certain that breast feeding was well established.  Sucking on a bottle or breast both require a lot of energy, but getting milk from a bottle is easier for babies, so if given a choice, they may get lazy at the breast or flat-out refuse to nurse.  The nurse who gave him the bottle felt really badly about it, but in her defense, she said he was looking all over and rooting around so much that she was certain he was already a bottle feeder.  Apparently, there is a window in which preemies should be introduced to the bottle.  If you miss that window, then you're really in trouble! 

So since Cayden is exhibiting all the signs that he's ready, I guess it was inevitable that he'd be getting a bottle sooner rather than later and it’s not as big of a deal as I was lead to believe??  I don’t know . . . I’m still kind of confused about all of these windows and what’s best to do and when!

Despite the fact that he got his first bottle earlier that day, when I went in to see him that evening (my visit was made possible thanks to my co-worker, Janine, who came over to stay with Jamison for the evening) and we had our nursing session, he did awesome!  He latched on quickly and sucked steadily for about thirty minutes.  I guess the boy is so smart (or hungry?), he knows what to do with a bottle and a breast, and will take his milk however he can get it.  Now the revised plan is to offer him one bottle a day, one breast feeding session a day, and the rest of his feedings still through his NG tube.

At his weigh-in on Thursday, he was up to 4 lbs. 5 oz. and after I left for the night, Nurse Megan gave him his 2-month vaccinations.  Even though he’s a preemie, they still keep on the vaccination schedule counting from when he was born.  So my poor little baby got three shots in his legs.  A common side effect of the vaccinations is sleepiness, but since he got them in the middle of the night, it didn’t phase him too much.

I did notice when I tried to breast feed him Friday at noon that he was pretty lethargic and had a weak latch and suck, but no one was concerned and attributed it to the vaccines he had gotten.

Also on Friday, they discontinued giving him caffeine (for apnea) and zinc (for growth and weight gain), so those are good signs.  Now all he’s getting in the way of medicines is his multi-vitamins and a dose of iron.

His weight held steady on Friday.  Maybe they discontinued the zinc too soon?

And now we’re caught up to my latest visit, Saturday evening.  I have been forgetting to weigh Cayden before we start breast feeding the last couple of days, but today, I remembered.  He latched on and sucked so well, and it showed when we weighed him afterwards:  he gained 26 grams, which means he drank 26 ccs of milk!  Considering he’s supposed to get a total of 35 each feeding, he did really well!  Of course, the scale isn’t 100% accurate, so he may have gotten more or less, but I could clearly hear him swallowing for the first time tonight, so I know he was getting something!

Unfortunately, he only gained 8 grams of weight overall from the night before, so he’s still at 4 lbs. 5 oz. 

 

When Daddy's away . . .

Jason left town to go back to work on Tuesday morning so I've been trying to juggle things at home, caring for Jamison, pumping, work, and visiting Cayden at the hospital with marginal success.  I've come up with a good analogy:  when Cayden was born 15 weeks premature and I realized what life was going to be like for as long as it took to get him home, I felt like somebody gave me three 10-pound bowling balls and said, "Here, juggle these!"  As ominous as it looked, I figured out how to do it, slowly getting stronger and able to deal with those heavy balls. 

As new things came up - Jason and I both getting the stomach flu for a day the week I came home from the hospital, Jason having to leave town for work for a week while I was still healing from the C-section and unable to care for Jamison fully, my going back to work - I felt like those were more bowling balls (and maybe even a flaming torch or two) thrown at me to juggle along with the already heavy enough stuff I was trying to keep in the air.  Somehow, I've managed to keep all of those balls and torches in the air, but some days, I feel like they're all going to come crashing down on me because I don't have the strength to do it anymore.  It's on those days when I'm certain everything is about to crash down that someone steps in and takes a couple of the balls out of the mix for me.

Now that Jason is out of town again, I'm having to scramble to recruit friends to watch Jamison for several hours at a time so that I can go to the hospital on the days he isn't in daycare.  Last night's visit to see Cayden was made possible by Johnny and Diana Adams.  Johnny stayed with Jamison while I went to the hospital.  I couldn't ask for a better babysitter than a father of three boys five and under!

I am indescribably grateful to them and so many others who have taken time out of their busy lives to help us.  It may not seem like much to the people helping, but it means the world to me to be able to go see my baby at this critical time when we're working on learning how to breast feed, or to not have to worry about cooking dinner, or to not have to worry about cleaning our house. 

I know this blog is supposed to be about Cayden and his progress, but I had to take a moment to acknowledge that without everyones' help and prayers, I don't think he'd be progressing as well as he has been.   Thank you all.

And now, the actual updates on Cayden . . .

Breast feeding has been going slow but steady.  Today he latched on and sucked for a considerable amount of time with the aid of a "nipple shield".  It's a device that covers the nipple and gives preemies the exact shape, size, and pressure points they need to latch and suck easier.  When I explained it to Jason, he said, "like training wheels?"  Yeah, like training wheels for breast feeding! 

Now that he's actually nursing at a full breast, he has the potential to ingest some milk, so the lactation consultant said it's time to start weighing him before and after each session to monitor how much, if anything, he's consuming.  Today, he gained four grams after nursing, so he got something!

He gained weight again tonight - up to 4 pounds, 3 ounces.  Seems like he's really packing it on lately!

A sigh of relief

Since his major brady episode last night, Cayden has been doing better - good, even!  He's had no noteworthy desats or bradys since the big one yesterday evening.  Hopefully the big change of keeping him on his tummy or side as well as splitting his vitamin dose up into two smaller doses has done the trick. 

I couldn't wait to get there to see him today after I worked for a few hours.  He looks good and it's so reassuring to see him sleeping peacefully, his little chest breathing steadily.  But I have to admit I was excited to wake him up because today we tried breast feeding with a full breast for the first time.  He did GREAT!!  <Insert tears of joy/relief/hope here> He was so wide-eyed and eager to try.  The lactation consultant, Peggy, was such a great coach and helped make his first experience as successful as anyone could have hoped for.  He licked, latched, sucked, swallowed, and breathed, repeating the cycle over and over for a good 10 or 15 minutes.  The innate instinct of human babies, even ones who aren't supposed to be born for another six weeks, is absolutely miraculous.

He may not have gotten a lot in fluid ounces, but what he got in experience is immeasurable.  He's building his ability and strength and hopefully the foundation for successful breast feeding in the weeks to come.  Again, it will take time to get there, but we're on a good path.

As if that weren't enough good news, daddy and big brother came to visit this evening too.  We tried to get some pictures of the cute little "Little Brother" onesie for Cayden, but he was all bundled up and we didn't want to disturb him, so we had to improvise.  Now all we need is a "Big Brother" shirt for Jamison! 

Daddy got to hold Cayden one last time before he heads out of town to go back to work for the rest of the week, and Jamison got a good look at his brother in his open crib.  We kept telling him, "That's your little brother in there.  Say 'hi, Cayden!'" And then Jami would give a little laugh.  But when Jason put him down to hold Cayden, Jamison let out a squeal of protest.  Jealousy, perhaps?  I think maybe he's starting to figure things out! 

Finally, updates on weight . . . last night he gained an ounce to creep up to 3 lbs. 15 oz and as of tonight's weigh-in, he is four whole pounds!  Four pounds, zero point five ounces, to be exact.  That's twice what he weighed at birth.

Not a good evening

I went to visit Cayden this afternoon.  We dry-breasted and then kangarood and things seemed to be going well.  When we woke him up to put him back in his crib around 5:30, his feeding had just finished and he desatted for a minute, but everything was fine and dandy when I left around 6:00.

I just called and talked to Nurse Valerie and she said he had a very significant brady that actually scared her around 7:30 tonight.  Again, it was at the end of his feeding but this time, she had to manually bag him to get him out of it.  She's very certain all of these episodes are related to reflux - the question now is how to treat the reflux.  In addition to stretching his feeds out over a longer time period and keeping the head of his crib elevated, she thinks he'll do better if they keep him on his tummy or side rather than on his back.  The episodes are always occurring when he's on his back.  She's going to talk to the primary doctor when he comes in tomorrow morning to determine what else, if anything, they should do right now.  The medication Prevacid is one option; thickening his breast milk feeds is another. 

On a more encouraging note, they want me to start trying to breast feed him tomorrow with milk and everything.  Valerie said a lot of times breast feeding actually helps with the reflux - all the more reason to do it!

I was too upset and concerned over this brady episode to remember to ask about his weight tonight, but they did tell me earlier today that he's up to 35 ccs of breast milk at each feeding.  I just hope he can overcome this reflux hurdle . . .

Another gain

I just got home from a late-night visit to see Cayden.  As of last night, he gained two more ounces.  He is now 3 lbs. 14 oz.  He did gain 18 grams again tonight, but it wasn't quite enough to put him up another ounce.

He's still dealing with the reflux and had another significant desat at the end of his feed while I was kangarooing with him.  For now, they're trying to spread his feeds out over a longer time period (90 minutes) as well as keeping the head of his crib elevated to see if that helps prevent the issue.  If it doesn't they may have to try medication and/or thickening his feeds.

Dry breasting is still going fairly well.  The nurse tonight said he's really showing signs of being ready to take a bottle and that we should discuss how we want that to happen sometime soon.  I guess there is a window of opportunity when they're most apt to pick up on it while still learning to breast feed and we don't want to miss the chance.  So I should be talking with the lactation consultants and his primary nurses in the next couple of days and hopefully he can get that tube out of his belly soon!

Yo, MTV! Check out MY new crib . . .

A big move for the little one yesterday . . . from an isolette into an open crib!  I don't think I mentioned, but on Wednesday, the nurses kept the top on his isolette open all day to see how well he maintained his temperature.  Turns out he did such a good job, they moved him into an open crib the next day!  I was told that they would move him when his weight reached 1800 grams (at the time, he was only about 1650 grams), but I think a surge in the number of babies in the NICU has created a shortage of isolettes, so I suspect they may have bumped him up and out a little earlier because they needed the isolette.  But he has been doing fine, maintaining his temperature and getting comfy in his new digs.  When they said "crib", I pictured a slatted crib, like one of his pod-mates has.  Apparently those are few and far between.  What he has looks more like a medium-sized Rubbermaid storage tub.  Not fancy and smaller than his isolette, but it's a big step up in so many other ways.

Nurse Megan mentioned that there are signs he may be developing problems with reflux.  It's not uncommon in preemies as young as he was and is treatable.  He has often been desatting and sometimes bradying toward the end of his feeds recently, both signs of possible reflux.  Today when I was there, he sounded very snufflely (a very technical term, I know, but that's the best way to describe it) and almost congested.  The nurse said that is also a sign of reflux, so there may be treatment forthcoming for that.

Last night, we tried dry-breast feeding again and Cayden did well, latching on a couple times.  As of his weigh-in yesterday, he was 3 pounds 12 ounces.

Daddy and I both visited him this afternoon.  Cayden had just finished a round of developmental therapy and then we tried putting him to the breast again.  He was more alert and interested than he was the last time we tried right after therapy, but I still think he was tired.  He managed to latch on a couple times but only briefly. Once they started his feeding through the tube, he really lost interest! 

Instead of going straight into kangaroo care, I took the opportunity to pass him off to Jason so he could hold his son for the first time.  Although I'm sure he was tired, he remained wide-eyed and fixated on his daddy while he held him.  It was a precious moment indeed. 

After awhile, Jason passed him back to me so we could kangaroo, which we did for the next couple of hours.  I left the NICU around 6:30, but I will be calling soon to check and see what his weight is tonight.  Nurse Megan should be with him tonight, so he will probably get his weekly "spa" treatment (bath and shampoo) with her.

Early intervention

Yesterday afternoon, Jason and I met with a social worker from the state of Colorado that designs early intervention plans of action for preemies.  Cayden will have access to physical, speech, and occupational therapy as well as other services he may need to help him develop to his full potential in the first few years.  All of these services are at no cost to families, which I think is absolutely amazing.  We will be assigned a case worker who will evaluate him then develop an IFSP (individualized family service plan) to meet his needs.  Once he's home, and for the next three years, therapists will come to our house to provide whatever services they decide he needs. 

I just cannot believe the support that is out there for parents of preemies.  We've been so grateful for the support and love from family, friends, and our employers, but now we have the government to be thankful for too!  And what's even more amazing is that we didn't have to lift a finger to find out about these services - they made contact with us at the hospital and aside from filling out a little (o.k., a LOT of) paperwork, the process has been so simple. 

After meeting with the social worker, Jason and I tag-teamed on physical therapy with Cayden, taking turns doing the exercises with him. 





Arm reflex exercise






Hand swaddle exercise

 

He got a pretty good workout, and I think it showed when it came time to try dry-breasting afterwards:  he just looked pooped and didn't latch on this time.  I was disappointed because I wanted Jason to see the miracle of him latching on, but given the circumstances, no one was too surprised.  So we didn't push the issue and moved on to kangaroo care.  He snuggled up right away and slept for two solid hours!

Cayden gained two whole ounces at his weigh-in last night, so he is up to 3 lbs. 11 oz.  Woo hoo!

Houston has lift off, we have latch on!

Yesterday, the nurses and lactation consultants gave me the go-ahead to try "dry breasting" with Cayden.  No, it's not a terrible skin condition, it's a way of introducing preemies to breastfeeding.  Because he is still so immature, he hasn't quite developed the ability to coordinate sucking, swallowing, and breathing all at the same time, so he can't just dive right into the milk supply, regardless of whether it comes from the breast or a bottle.  He has been practicing sucking on a pacifier for two or three weeks now and yesterday, he got to try the real deal.  He had just had his cares done and was wide-eyed and wiggling.  He's starting to realize that after his cares comes the food, even if it is just going through a tube directly into his tummy for now.

Just before trying, I pumped so there was no milk left in my breasts.  The lactation consultant, Virginia, handed him to me and showed me the best position to hold him - supported by a Boppy pillow in the "football" hold, where he is sort of tucked by my side with his feet pointing back while I hold his head at the base of his skull.  For the first attempt, and sometimes it takes many attempts, a good start is just some rooting around, taking in the smell and feel of things, and maybe licking a time or two.  If he does that, they're very happy.  Well, Cayden did all that and more!  He actually latched on within about 30 seconds!  It was an indescribable moment that brought me to tears.  Even Virginia was amazed and thrilled!  None of us expected him to do so much so quickly. 

One has to realize that all of this effort is exhausting for a tiny baby, so after latching on, the most they can do is give a couple of sucks before they need a break.  Cayden went through the latch, suck, relax cycle a good five or six times in a half-hour period.  That's as long as they allowed him to practice for his first session.   When he was finished, I snuggled him up to my chest and we kangarood for over an hour. 

Preemies often struggle with breastfeeding, so I have been so anxious and worried about how he would do.  Being able to nurse him is something I feel very strongly about and am hoping beyond hope that he will do well with it over the long run.  The transition from parenteral (tube) feeding to nipple (bottle or breast) feeding is a process that takes time.  He will still need some supplemental calories mixed into his breast milk for awhile, so he will have to take a bottle for those feedings.  For now, we'll continue practicing with the dry breast.  Once he's ready to actually nurse (hopefully in the next month or so), he will likely start with one breast feeding session per day.  (Right now, he's being fed eight times a day, every three hours.)  Gradually, as his weight increases and stabilizes for his adjusted age, more of the bottle feedings can be replaced with nursing sessions.  Obviously, the goal is to get him to obtain all of his nutrition through nursing, but it may take a few months.  In the meantime, The Pump is going to be my constant companion.

As of last night, his weight was up again, to 3 lbs. 9 oz.

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.

The Preemie Purple Heart

I meant to post about this when I got it a couple weeks ago, but haven't had the chance until now.  A friend and former co-worker of mine, Michelle, gave me a wonderful gift - a necklace with a Preemie Purple Heart.  She happened upon it while attending a conference where the March of Dimes had a booth set up with them for sale.  She said when she saw them, she knew she had to get one for me.

An excerpt from the card that came with the necklace says:

"The Preemie Purple Heart is born of an idea borrowed from the U.S. Army, a medal given for being wounded in battle.  What bigger battle is there than the battle for life and the wounds of premature birth live on with the infant and family forever.  The color was once reserved for royalty, making it special and it is gender neutral.  The heart is not a solid color and the strips (I think they meant 'stripes') in each heart are a little different, just as every child and every journey is a little different, but the basic design is the same just like the basic experience is the same.  The heart is made of glass it is strong but not so strong it could withstand a crushing blow.  The premature child is strong but not invincible.  It is a heart because the heart is our center, its every beat renews life and hope, it symbolizes love.  At the bottom of the Preemie Purple Heart is a teardrop, it is symbolic of the tears shed during the journey of a premature family, good and bad, joy and sorrow."


I love my necklace and wear it every day along with my 'Jamison' and angel medallions.

For any of you who aren't familiar with the March of Dimes, they are a non-profit organization doing work to help moms have healthy babies and a big part of their research and education goes toward premature babies.  Ironically, last year, I donated money to another friend who walked to raise money in the annual March for Babies.  His preemie daughter will turn two very soon.  When I found out that he and his wife had a preemie, I felt bad for them, but had no idea what they went through.  Now I know!  The March for Babies is in April this year here in Denver.  I would love to walk in it and help raise money for the March of Dimes, but I'm not sure I should commit just yet.  Cayden will only have been home for a couple of months by that time (hopefully) and I think I should wait to see how things are going when the time gets closer.  In the meantime, if anyone wants more information about the March of Dimes and their work, check out their website: March of Dimes

And finally, the latest on Cayden . . . trudged through another good snowstorm to get to the NICU late last night.  Cayden looks great and is now three and a half pounds.  On my way there again soon to do some more PT.

We're halfway there!

I have a countdown calendar on the wall at home, counting down the days until Cayden's due date.  From the day he was born until February 28th was 101 days.  Today, we're at 50 days left.  As always seems to be the case, I feel like the time has gone quickly yet so slowly depending on how I think about it.  But it's starting to feel like we can let ourselves look forward to him coming home.  We even went ahead and had his new furniture delivered yesterday, and I've been spending some time putting things in his dresser, organizing his closet, and getting his room ready for his homecoming.

Yesterday's visit to the NICU was a nice one.  Cayden has gained another ounce and is 3 lbs. 7 oz. as of last night.  During kangaroo care, Nurse Valerie had a beautiful CD playing in the pod next door.  It was simply the sound of birds chirping and twittering with a stream running in the background but it set the most peaceful tone.  While holding my little bundle, I closed my eyes and easily imagined being in an alpine meadow.  I could picture Jason and I sitting in camp chairs or on the porch of an old cabin in the mountains while we watched our two boys run and tumble and play in the meadow.  I can't wait to live that day for real.  In the meantime, I need to buy that CD!

After kangarooing, Nurse Valerie took Cayden from me to put him back in his isolette.  When she lifted him off of me, she said, "Oh my gosh, look at that!"  It was an imprint of Cayden's footprint on my belly!  You could see the outline of his whole foot and each of the five wee toes where he had been snuggled up tightly against me.  I wish I would have had a camera to take a picture - it was the coolest thing!  I'm not a tattoo person, but I think that might have been something I would have had tattooed on my body if someone had been standing by with the ink!

Nuclear melt down

I think the ongoing stress of being a preemie parent finally caught up with me yesterday.  Although I've been feeling like things have been reasonably manageable and the anxiety level about Cayden's immediate health has been fairly low lately, I had a major meltdown over Jamison losing a shoe in Babies R Us!  Granted, there were several other factors that built up my stress level in the hour or two beforehand, but sheesh!  In the aftermath, I felt even more anxiety that if I can't handle a lost shoe, how am I going to handle the rest of this Preemie Marathon? 

Once I was able to get home, eat some dinner, and somewhat compose myself, I made my way to the NICU to see Cayden.  That little boy is the best therapist ever!  All I had to do was reach into his isolette and let him hold my finger and everything suddenly felt better.  Nurse Megan also helped assure me that I wasn't a complete and total nutjob - she reminded me that between the prolonged stress of having a baby in the NICU and the hormones still flowing through my body, my reaction was completely understandable. 

I helped give Cayden another bath and then we cuddled up for some kangaroo time.  His weight was about the same last night but they decreased his oxygen to 1 liter of pressure.  (I think I forgot to mention when they dropped him to 1.5 liters a couple days ago.)  One liter is supposedly the lowest setting they use on the high-flow oxygen, so the next step down will be moving to a low-flow nasal cannula.

The slumber party is over

Apparently, I've been breaking the rules.  Moms are not allowed to sleep during kangaroo care.  Oops!  It was brought to my attention the morning after I spent the night at the hospital.  I had mentioned to the nurse that was on duty that I should have come in to kangaroo at 6:00 that morning rather than trying to go back to sleep in my room because I would have slept much better.  The nurse said, "You're not allowed to sleep while you have the baby.  That's a big no-no!"  In my sleep-deprived delirium, I think I may have thrown my favorite primary nurses under the bus by saying, "Really?", indicating that no one had ever stopped me from napping before.  So Nurse Megan had to have an official talk with me last night about The Rules.  I can see where they're coming from as far as not wanting a baby to squirm out of their mother's grasp while she is passed out, sawing logs while holding her baby.  But although I may technically be sleeping sometimes, I am hyper-aware of every little movement Cayden makes and every little noise from his monitors, so I highly doubt anything bad would ever happen.  Nonetheless, the slumber party is over.  Cayden can sleep, but I won't be enjoying any more catnaps during kangaroo care!

As of last night, Cayden is up to 3 lbs. 6 oz!  They upped his dosage of zinc and caffeine based on his increasing weight, which should in turn help him continue to put on the pounds, albeit an ounce or two at a time.

Sleepover at the NICU

Thinking it would save me some travel time, I packed my overnight bag and reserved one of the "family rooms" last night at the NICU.  Since I didn't get to the hospital until 9:30 at night and had to work just down the road the next morning, I figured I could save a trip home and back by staying there.  Turns out it didn't really save much time!  It was nice to be able to kangaroo with Cayden late at night and not have to worry about driving home all drowsy and tired afterwards, but the accommodations were not very accommodating.  The bed was hard as a rock and short-sheeted with three paper-thin pillows.  I heard industrial toilets flushing and heavy doors slamming all night long, even with earplugs.  So I got very little sleep but I must admit it was a nice start to my day being able to see Cayden first thing!

For the past couple of days, I've noticed that Cayden seems to wake up about thirty minutes before his care times.  If I had to guess, I'd say he's hungry!  He waves his arms around like he's trying to catch someone's attention, saying, "Hey!  I'm hungry over here!"  He mushes his tongue around and puts his hands near or sometimes in his mouth.  I mentioned his behavior to the nurse this morning and she said she'd tell the docs at rounds because they may want to increase the amount of food he's getting.  Sure enough, they increased his feeds 3 ccs each feeding to a total of 31 every three hours.  When you multiply three extra ccs times eight feedings a day, that almost equals one extra feeding a day, so it's pretty significant.  He started getting the extra milk this afternoon and has tolerated it well.  We'll see if it keeps him from waking up early - any extra time he's awake is time he's burning more calories rather than sleeping, growing, and gaining weight.

Speaking of gaining weight . . . he's up to 3 lbs. 4 oz. tonight.  Yea!

PT with Daddy

It's been a long time, but Jason and I were finally able to get to the NICU together without Jamison (he was back in daycare today).  Jason took advantage of his time there to do Cayden's physical therapy with him while I was otherwise occupied, pumping.  I found it so nice to sit back and watch the baby/daddy interaction - it's the first time Jason has really had a chance to handle him more than just a quick touch.  He says it was fun and that it was nice to be involved and finally have some hands-on time.  :-)

He's getting one more cc of breast milk at each feeding (so he's up to 28 ccs every 3 hours) and his weight tonight was up a couple ounces to 3 lbs. 3 oz.

Over the last couple of days, the nurses and doctors have not been able to hear his heart murmur.  I don't think I've mentioned this on the blog before, but the murmur is related to what's called a PDA or patent ductus arteriosis. The ductus arteriosis is a valve in the heart.  In full-term babies, the valve is mature and closed.  In preemies, the valve often hasn't had a chance to close as it should ('patent' means 'open') which can lead to problems with blood pressure, oxygenation, and other things.  Cayden's PDA was diagnosed at birth as mild to moderate and they told us they would continue to monitor it to see if it would close on its own.  (If it doesn't close on its own, he will need surgery.)  To date, he hasn't shown any signs of problems related to the PDA and they've been hopeful that it would close on its own.  Now that the murmur is undetectable, it's a good sign that the valve is closing or maybe even already closed, so that's great news!

My first bath

Cayden spent a bit of time at the Spa at the University of Colorado NICU last night!  Nurse Megan gave him his first real bath and he seemed to thoroughly enjoy it.  He didn't particularly like having his leads removed because the adhesive was stuck pretty good to his delicate skin, but once she got them off and put him in the tiny tub (a plastic basin lined with wash cloths), he totally relaxed.  She washed his body first then took him out to dry him off in a big warm towel.  Next, a shampoo and rub-dry.  Holding his wrapped body like a football with his head over the basin, she wet his hair with a warm washcloth.  She used a tiny bit of soap and a soft-bristled brush to gently scrub and he just LOVED it!  His eyes drooped at half-mast and you could tell he was completely enjoying the experience.  After his head massage, she rinsed with another warm wet wash cloth then gently rubbed his hair dry with another cloth.  Finally, she wiped his eyes, mouth, and face with a sterile saline wipe.  Clean as can be! 

I don't know if I was much help - I was nervous just watching her!  He looked so floppy and slippery.  She assured me that once you realize they aren't as breakable as they appear, it's really pretty easy to bathe preemies.

I took some video of the event and will try to upload it on this page somewhere. 
(Try this link: Shampoo video)
I wanted to get some footage of him crying but missed the moment.  Most moms hate to see their babies cry, but I was overcome with joy hearing his surprisingly strong cries of disapproval at having the leads removed.

Nurse Megan said that most preemies are so relaxed after a bath that they can barely keep their eyes open.  We kangarood for an hour afterwards and she was right - he snuggled in and didn't budge the entire time!

His weight was up another ounce last night to 3 lbs. 1 oz.

Happy New Year!

Cayden rang in the new year by reaching a milestone - he weighs three whole pounds!  The doctors still want him to gain at a faster rate than he has been, so they started giving him zinc.  They're not sure why, but it seems to help babies put on more weight.  He's also getting a bit more breast milk (27 ccs every three hours) so we'll see where he goes from here.

He had a metabolic panel drawn last night as well just to make sure all of his electrolytes and things are where they should be and they are.

My friend Laura, an aspiring photographer, visited the NICU with me yesterday.  Cayden must have thought the paparazzi was following him the way she was snapping that camera at him!  I can't wait to see the shots she took. 

I'll be heading out to see him in an hour or so.  Nurse Megan wants me to help her give him his first bath tonight. How exciting!