Tiny hand

Tiny hand
November 20, 2010 (one day old)

Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Friday, December 31, 2010

There's snow way

We were supposed to have our first big snowstorm of the year yesterday.  The snow was supposed to start flying in the morning around 11 and then intensify after 2 p.m.  They were calling for a messy evening rush-hour commute, so I put off my visit to the NICU until later in the evening.  Regardless of the weather, I swore there was no way I would miss going to see Cayden.  Turns out we didn't get as much snow as they predicted and although the roads were snow packed and icy, by the time I was out driving, there was no one else on the road and my journey to the hospital went just fine. 

Once I got there, I was rewarded with an hour of cuddle time with Cayden.  No new news as of last night - his belly has been looking fine, his oxygen and feeds are the same, and he only gained 10 grams of weight since the night before.  I am on my way there again now, so I will report back soon!

Wednesday, December 29, 2010

Physical Therapy for Preemies

Cayden has been having physical therapy sessions now for a couple of weeks but today was the first time I was able to be there for it.  Everything they do centers around making him feel and move as if he was still in my tummy.  He should be curled up in a tight ball with pressure on him from all sides.  There should be gentle, swaying movement.  But despite the nurses' best efforts to recreate a womb in the isolette with swaddles and bumpers, it just isn't the same. 

Physical therapy for preemies isn't anything like PT I've been through.  Although for Cayden it was stimulating and demanding, from my perspective it looked downright relaxing!  The therapist started by just placing her hands on his head and body, applying gentle pressure.  He had been asleep, so the interruption made his stats (heart rate and oxygenation) less than ideal.  Then she had me do the same thing, saying how it could help because a baby knows his mother's touch, and sure enough, just a few seconds after I put my hands on him, his stats went back to normal. 

Next, she showed me how to "rock" him.  I called it "going for a magic carpet ride".  With both hands, I lifted him from underneath while he was still curled on his side on his little isolette pad and slowly moved him back and forth.  It's supposed to give them the sensation of the type of movement they'd experience inside their mommy's tummy.

Then we showed him where his hands were and how good they could be at helping him self-soothe.  I held his hands together in front of his face so he could see them, then tried pushing them gently toward his mouth.  At one point, he clasped his two little hands together all by himself - it was the cutest thing!  Next, I took one hand and brought it up to his head and held it there so he could feel his soft hair.  The idea of these "exercises" is that he will learn to comfort himself by sucking his thumb, touching his face, or stroking his hair.

Finally, we did what the therapist called "vibration", but I'd say it was more simply just using my hands to apply alternating firm pressure between his shoulders and his hips.

All this excitement must have tuckered us both out because we both slept hard during kangaroo care after his PT.  I thought he had a couple of brady episodes, but the nurse said they were another baby's alarms I heard.  I know I woke up to rub his back to try to bring him out of it and make the alarm stop, but he didn't seem to respond as quickly as he has before.  For all I know, it really was another baby's alarm I was hearing, so no wonder my rubbing didn't seem to help!

Nurse Shawna was on again today and she said she didn't like how his belly looked again this morning when she first came on shift, so she told the docs and they did an x-ray just to be sure there wasn't a problem.  The x-ray looked fine, so there shouldn't be any reason for concern about digestion issues (for now).  They're going to keep him on the lower, 24 kcal supplement for the time being but may increase the quantity of breast milk he's getting to make up some extra calories.

This afternoon, they reduced the setting on his high-flow oxygen from 3 to 2.5, so he's still making progress in the respiration department.

Tonight was his last shot of Epo (to help boost his red blood cell volume).  They will check his hematocrit after he gets the last dose to see if the treatment worked and decide how to proceed from there.

All in all, I'd say it was a pretty busy day for the little guy!

Tuesday, December 28, 2010

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.

Monday, December 27, 2010

Big ol' hat

Since Cayden is still supposed to be sequestered inside a warm, dark womb, it's not surprising that he doesn't care much for bright light.  The nurses try their best to keep it dim as much as possible, but they often have to turn lights on to do his cares.  Although they are pretty good about covering his isolette back up when they're finished, more light still gets in than he likes.  Apparently, he shows his distaste by desatting, so Nurse Zoe came up with a perfect idea today - she put a knit hat on his head and pulled it down over his eyes.  He looks so cute in it (although he kind of reminds me of the "Dumb Donald" character from the Fat Albert cartoon!)  It didn't seem to bother him, so if it works, I say go with it!

I worked again today and was so exhausted by the time I got to the NICU that I fell asleep with Cayden during kangaroo care.  He had a couple of bradys during that time but he came out of them o.k. after a little back rub from me.

Although I thought he was doing a good job of gaining weight, the doctors feel otherwise.  They would like to see him putting on more than he has been, so they upped his caloric supplement from 24 kcal to 26 kcal.  The supplement adds extra calories in the form of fat.  Are they telling me I haven't eaten quite enough Christmas cookies to pass along the fat I'm getting to my breast milk?  I'll try harder . . .

Sunday, December 26, 2010

"High-flow glow"

The whole family (mommy, daddy, and big brother) went to visit Cayden in the NICU yesterday on Christmas day. His gift to us was showing us how he can breathe on his own! 

Skipping days when you're blogging about a baby in the NICU can lead to leaving out little steps that happen in between posts.  I missed mentioning when Cayden went down one more notch on the CPAP to a setting of 4.  (I had previously been told that 5 was the lowest setting, but apparently it's not.)  So he was at 4 for a couple of days and did so well that yesterday, they took him off CPAP altogether.  Now he's receiving oxygen through a nasal cannula known as high-flow and doing all of the breathing on his own.  Daddy joked that he had the "high-flow glow".  I think it was us proud parents who were glowing!  Aside from the achievement of breathing, he should be more comfortable without all of the headgear, straps, and mask on his head and face.  Best of all, we can see his sweet face better without all those things in the way.

His weight has also been steadily increasing by about an ounce a day.  As of his Christmas night weigh-in, he was 2 pounds 14 ounces.

I visited him again this afternoon and he has been doing very well on the high-flow.  Nurse Shawna surprised me by dressing him in a tiny "Baby's First Christmas" onesie.  I found it yesterday when I pulled open his drawer to get a diaper.  It was labeled preemie size and although it looked tiny, I thought for sure it would be too big to fit him.  Turns out it fit!  I tried taking a picture with my phone - we'll see how it looks and if it's o.k. I will post it below.

Saturday, December 25, 2010

Not a creature was stirring

I wasn't able to get to the NICU until 10:30 last night, Christmas Eve.  I had just missed Cayden's care time and he was sound asleep.  I asked the nurse if she thought I should wake him to kangaroo with him and she said it was up to me.  To hold him was all I wanted for Christmas, so I selfishly said, "let's do it", hoping the move from his isolette to my warm skin would be quick and that he would fall right back asleep.  No such luck.  He was as wiggly as I've ever seen him!  I spent about 90 minutes with him and put him back just before midnight, telling him if he didn't go to sleep, Santa wouldn't be able to come visit him in the night.  The nurse wrapped him up in his Christmas blanket, dimmed the lights, and put the cover over his isolette.  Merry Christmas to all, and to all a good night.

Thursday, December 23, 2010

Back to work

Well, Jason finally came home last night (Tuesday) and I went back to work today (Wednesday), although I didn't get much actual work accomplished.  The only way I can figure out how to get my twenty hours in each week is to work four days a week, five hours each day.  That should leave me just shy of two hours to spend at the NICU on the days Jason is out of town and while Jamison is at daycare. It all sounds good in theory, but whether or not it will actually work remains to be seen - I was absolutely zombified after getting about four hours of sleep between milk pumping sessions the night before.  All this milk pumping is a full-time job by itself!

The good news is that I was able to take a nice nap with Cayden once I got to the NICU.  There is a recliner in his room and I've figured out how to pimp it out with pillows, kick up the footrest, then recline at just the right angle so it's a nappers dream (pun intended.)  Once the nurse puts the warm blanket over top of him, it's all over but the snoring.  We kangarood for over two hours and it was the best session yet - Cayden was laying more diagonally across my chest, giving me a better view of his face and giving him a nice soft place to rest his head and snuggle up.  He slept so soundly, and his monitors hardly chirped the whole time.

In other news, they've changed his feeding schedule to less often, which means he can get more milk at one time, which means they disturb him less often, which means he can get longer periods to sleep, which means he should grow even better!  Instead of being fed every two hours, as of this afternoon, they'll feed him 25 ccs every three hours.  Incidentally, his weight is now up to 2 pounds, 12 ounces.  He also got a sponge bath today, and I finally got a set of footprints from him.  I wish we could have gotten his footprints when he was first born because I imagine they were even smaller, but with the PIC line he had in his foot, they couldn't do them.

Monday, December 20, 2010

30 weeks down, 10 to go

As of today, I would have been 30 weeks pregnant.  It's amazing to me to think this little baby is living outside of my body this early.

When I showed up at the NICU today, they were just finishing a head ultrasound.  I didn't realize they'd be doing these periodically throughout his stay.  I thought the one he had when he was about 10 days old would be his last if it looked good, but apparently they continue to monitor him.  I did kangaroo care with him after they finished the ultrasound.  I felt he didn't do as well as he has been doing lately, but with all the action he'd had just prior to my holding him, that's not unexpected.  It seemed the alarms were going off a lot more than they have been, and although the nurse said he did have a few desats, she said he did pretty well overall, so I'm happy!

Sunday, December 19, 2010

One month old!

Can it be that Cayden is a month old already?  Technically, we still talk in gestational terms - tomorrow he will be 30 weeks - and his age will be adjusted for the first couple years of his life when it comes to developmental milestones, but I wished him a happy birthday today anyway.

The little one is getting feisty in his "old" age - apparently, he pulled out his feeding tube today!  His hands are always up by his face and despite the nurses' best efforts to swaddle him with those arms down by his side, he insists on having them out.  Headstrong and willful already!

With Jason still in Memphis for work and my dad having left this morning, I am having to juggle Jamison, constant pumping of breast milk, and trips to the NICU by myself for the next couple of days, but thanks to the help of so many friends, I should be able to manage.  Today's visit to see Cayden was made possible by my friend and co-worker, Liz, and her sweet little boy, Tate, who came to our house to watch Jamison so I could go to the hospital.

I made the most of my visit, doing kangaroo care for almost two hours.  Cayden did great the whole time. It's amazing how fast the time goes by!  

Saturday, December 18, 2010

Kickin' some CPAP butt

They took Cayden's CPAP settings down another notch today, which puts him at the lowest setting they use on that device.  Every time they make a change in his respiration where it decreases the help he's getting, it can cause him to have more issues with desatting and bradys and the like, but so far, he's been doing very well.

His weight is now up to 2 lbs. 10 oz.  I know he's still tiny, but when you consider he's almost 33% heavier than he was at birth, that's a big change!

A couple nights ago, I put up some Christmas decorations around his pod - snowflakes and cranberry red beads, a ceramic angel to watch over him, and a big gold bow on the top of his isolette.  The nurses love it -- I hope he does too!

Friday, December 17, 2010

A new neighbor

The NICU has been getting quieter lately.  Seems a lot of the babies have been going home in the last couple of days, including the baby nearest to Cayden's pod.  I never met that family, but I bet they're going to have the best Christmas ever.
This evening, as I opened the curtain to leave Cayden's little area. I walked straight into a rush of people.  Doctors, nurses, respiratory therapists all still in their surgical scrubs, masks, and hats were wheeling a tiny, newly born baby from the OR to his new home in the recently vacated pod near Cayden.  I was overcome with emotion.  It was like I was witnessing the same scene that must have played out exactly four weeks earlier when Cayden arrived there.  I thought of what had to be the dazed and terrified mother still lying on the operating table, frantically wondering what was going to happen to her baby.  I can't believe that was me less than a month ago.  On one hand, it seems like forever ago, but then again, it seems like it all happened just a couple days ago.

Kangaroo care with Cayden has been going very well.  I've been holding him for at least an hour each of the past couple of days, and he is tolerating it perfectly.  It takes him about 10 or 15 minutes to completely settle and fall asleep, but once he does, he sleeps so comfortably. 

Today, I noticed something that will forever remind me how small he is:  every day, I wear a necklace (given to me by my dear cousin, Danielle) with two charms on it.  The charms are circles, 3/4 of an inch in diameter, with an angel on one and "Jamison" imprinted on the other.  I usually pull the necklace back and out of the way with the charms behind my head while I'm kangarooing, but today I forgot.  At one point, I looked down and saw Cayden had his hand over top of the angel charm - his tiny hand barely covered it.  I hope that years from now, long after that necklace has broken and the charms are tarnished, I can pull it out of a jewelry box and show my grown, healthy son how far he has come.

Thursday, December 16, 2010

Two more good days

I missed posting yesterday and the day before because I got home from the NICU so late (once after midnight and last night after 10 p.m.) but both nights were good, long visits.

Yesterday evening, I kangarood with Cayden for just 20 minutes before going to a meeting for NICU parents discussing how to handle holiday stress in times of crisis.  It was sponsored by the Parental Advisory Council, a group of parents of NICU "graduates", and the hospital chaplain.  There were only two other babies' parents who came, but it was nice to meet them and hear their stories and concerns.  One of the other sets of parents was a couple in high school.  I couldn't stop thinking how hard it must be for them.  Although they're young, they seem like they're responsible and committed to each other and so mature for their age.  I couldn't imagine going through this kind of journey so young.

It was nice to meet the graduates' parents as well - they have a lot of insight, advice, and comfort to offer.

As for Cayden's progress, he is eating up a storm!  He's doing so well on his feedings - he is up to his maximum of 13 ccs every two hours - that they are supposed to remove his PIC line later today.  That's the last IV he has, and now that they've stopped giving him the TPN or "nutrition in a bag", he doesn't need it.  The only other thing they were giving him intravenously was caffeine.  As a drug, it helps reduce apneic episodes, but now they will give it to him orally.  (I wonder if Starbuck's has expanded into the medical industry?!)  So he will be free of the last invasive connection and will have one less wire in his pile of spaghetti.

Now that he's getting all of his calories and nutrition from breast milk, they started adding human milk fortifier to it to boost the caloric content.  Time to bulk up, baby!

Monday, December 13, 2010

Grandpa Ray stopped by today!

Jason had to go back to work today and my dad flew in from Pittsburgh to help out with Jamison and around the house while he's gone for the week.  I am so relieved that he's here!

We visited the NICU this afternoon for a couple of hours.  Grandpa Ray last saw Cayden only a couple days after he was born, so now, three weeks after that, he was able to see the positive progress with his own eyes.

Cayden is on CPAP again and tolerating it well so far.  We did kangaroo care for over an hour and he did great the whole time - he was very relaxed, snoozing away and cozy while my dad and I talked. 

One whole hour

Cayden has continued to do well since our last visit.  He's up to 5 ml of breast milk every four hours, and they'll continue to increase that by 1 ml every 12 hours until he gets to 11.  His weight was up a couple more ounces today to 2 lb. 8 oz.  Guess that's what lots of milk will do for you!

We did kangaroo care for a whole hour tonight.  Had one little brady episode that got my heart racing, but he came out of it with just a rub on his back.

I've been carrying around a small piece of cloth next to my skin for over a week now.  Tonight as he was being bundled up for the night, we put it on his chest, crossed his little arms over it like he was hugging it, then swaddled him up in his blanket.  I hopes he sleeps well with Momma's scent close by to comfort him!

Saturday, December 11, 2010

Hello Big Brother!

Jason and I took Jamison to the NICU with us this afternoon.  It was the first time we took him back into Cayden's area (as opposed to him just hanging out in the waiting room with one of us while the other was back with Cayden) since a day or two after he was born.  (Jamison has had a cold since then, and they don't want anyone who's sick, especially a child, back where the babies are.)

Jason took Jamison out of his stroller and brought him over to the isolette.  We told him to say hi to his little brother and he put his little hand on the top of the isolette, looked in at Cayden then looked back at us as if to say, "Well get him out of there - I want to play!"  It was heartwarming and felt so good to finally have all four of us in the same room.

Of course a 14-month-old can't be expected to sit quietly in a dimly-lit hospital area with all kinds of tempting cords, buttons, and plugs just begging to be explored, so Jason took Jami for a stroll while I did kangaroo care with Cayden.  For the first ten or fifteen minutes, he was wide-eyed and awake, looking up at me and blinking with his little hand on my heart.  It was the best kangaroo care moment yet.  He eventually closed his eyes and napped for the last fifteen minutes I held him.  I don't know why, but I wasn't as nervous this time - it just felt like things were o.k. and I wasn't worried how he would do.  I think my being more relaxed help him do well in return.

They started doing physical/developmental therapy with him this afternoon.  I wasn't there when they did it, but I hope to be there one day next week to watch, learn, and eventually do the exercises with him myself.

He's had a great 24 hours with no brady episodes and they're upping his feeds by one milliliter every 12 hours. As of last night, his weight is 2 pounds 6 ounces, which is up six ounces from birth.  Hopefully he'll continue to stay healthy, tolerate his feedings, and keep putting on that weight!

Friday, December 10, 2010

Good day, good night

I visited Cayden again this evening, while nurse Valerie was on duty.  Cayden had a good day and was on track to have a good night as well.  The official word is that he is back to where he was before his infection, looking very good and healthy.  Valerie encouraged me to do Kangaroo Care although I was nervous about it after what happened the last time.  She reassured me that he was in great shape and that she'd be close by the whole time. 

It was a strange mix of complete joy and total anxiety - the minute he was on my chest, I just melted.  But the euphoria was short-lived.  Any time he moved his head, any time his monitor chimed or alarmed, all I could think was "did that affect his airflow?  Is he still o.k?"  Then he got the hiccups and I got really nervous, so I called Valerie to come make sure everything was o.k., which it was.

I spent 45 minutes with him and he did just great.  We got him bundled back up in his isolette and he quickly settled into sleep.  All was good.

Thursday, December 9, 2010

A peaceful day

Cayden had a good, quiet day today.  Just a couple mild brady episodes that only required a gentle rub to bring him out of them.  Didn't want to rock the boat at all so I decided not to do Kangaroo Care when I got there tonight.  He's back to getting a little breast milk and hopefully he'll start working his way up to full feeds again soon.

Wednesday, December 8, 2010

Kangaroo care scare

Everything was going well for Cayden today - no brady (bradycardia or change in heart rhythm) episodes all day, resting well, tolerating his feeds.  Jason and I showed up to visit in the afternoon and after his care (scheduled times where they wake him up to take his temperature, feed him, change his diaper, and check everything over) at 3:00, I was allowed to hold him. 

He was snuggled up on my chest, resting comfortably aside from a brief episode of hiccups, and I was enjoying the moment.  After about 30 minutes of Kangaroo care, one of the alarms started signaling that his oxygenation was going down, which happens fairly often, and he usually pulls himself out of it on his own.  Sometimes he doesn't, and they have to give him a good vigorous rub on the back to remind him to breathe again.  Well this time, he didn't pull out on his own, so the respiratory therapist came over to check him out and give him a rub and that didn't work.  They took him off of my chest and put him back in his isolette to work on him.  More alarms went off - now his heart rate was dropping and they had to remove the SiPAP and manually bag him.  It was so terrifying to watch and seemed like forever, focusing on those numbers, willing them to go up.  After maybe 5 or 7 minutes, they had him stabilized again and the nurse practitioner came over to talk to me about what had happened and to reassure me that he was fine now.  She said that the episode may have been triggered by a change in his oxygen supply, maybe because of how he was positioned during kangaroo care.  Maybe his head moved just enough while he had those hiccups to put the smallest kink in his SiPAP tube that restricted his oxygenation.  Whatever it was, she assured me that it wasn't my fault and encouraged me to continue doing kangaroo care because the benefits to both him and me are so positive, but I'm leery.

Anyway, we left there at about 4:15 thinking all was stable, but we just called to check on him and the night nurse, Megan (another of my favorites), said he had another bad episode just before she came on where they had to bag him again.  She reassured us that he was doing well now and resting comfortably, but then she said something that was very unsettling:  she said that this episode was probably brought on because the prongs from his SiPAP had slipped out of his nose.  Part of me feels like, well, at least there was a good reason, but the other part of me is screaming how could they let this happen??  Both Jason and I are sitting here now shaking our heads. I guess they can't have their eyes on him every single second, but isn't this something they should have prevented?

Tuesday, December 7, 2010

The best (belated) birthday present ever

Last Thursday, I kept saying, "All I want for my birthday is to be able to hold Cayden".  But when we got to the NICU that day, they had done several things to him that kind of tuckered him out, so they said I should just let him rest without the additional action of moving him out of his isolette.  That was the first time in five days I couldn't hold him and I was crushed.

Today, I got my belated birthday present!  Thirty minutes of bliss with little Cayden on my chest.

He is doing and looking so much better!  We're getting back on track to where we were before - they started giving him breast milk again, took out his arterial line, and reduced the amount of time they will give him antibiotics from 7 to 5 days.  Blood pressure, labs, x-rays are all looking good and he's doing well on SiPAP.

Hopefully this good trend will continue . . .

Monday, December 6, 2010

Breathing easier

Well, Jason and I are breathing easier, but Cayden is doing more of the work himself because they extubated him (took out his breathing tube so he is no longer dependent on a ventilator.)  He is back to SIPAP, which is step in the right direction. 

During our visit this afternoon, we also learned that they've found a source of infection - that breathing tube of all things!  It's bacterial in nature so that explains why he responded well to the antibiotics.  They'll continue the antibiotics for a total of 7 days to be sure it's all cleared up.  In the meantime, everything else is looking good and he's stable.  He may have a small area of pneumonia in one lung, but hopefully the antibiotics will clear that up.  They took out the IV in his scalp, he doesn't need any more blood transfusions for now, and hopefully he'll get back to having breast milk again soon.

For a change, we actually felt good leaving the NICU today, like we've overcome this hurdle and can stop holding our breath for the moment.  Tried taking some pictures while they had his isolette open and all of the masks off of him, but he was being shy and trying to avoid the paparazzi by shielding his face with his big bandaged hand.  Silly little guy!

Sunday, December 5, 2010

A nice long visit

Spent almost four hours at the NICU this evening and got lots of reassuring, encouraging, first-hand information from the doctors and nurses.  Everyone we've spoken to throughout the day (we started calling to check on him at 9:00 this morning) is saying how much better he looks and seems to feel. 

Cayden is still on the ventilator but they've reduced his settings so that he's not quite as reliant on it as he was.  His blood cultures have not shown any bacterial evidence of infection, they don't suspect pneumonia, and at this point, they're thinking maybe it's something viral but they may never know for sure.  The good thing is that he is still responding well to all the treatment.  They're still giving him antibiotics, but will likely discontinue them tomorrow.  He's been getting blood and blood products and TPN (his source of nutrition since they discontinued giving him breast milk.)  The extra IV and arterial lines they started yesterday are all still in place although some are not being used.  They just don't want to pull them until they're sure he won't need them since he's difficult to obtain access on.

When I first peeked in on him and said hello, he opened his eyes wide, looked right at me, and started wiggling and I swear, waving his little bandaged hand at me.  I said, "He looks so red!"  The nurse pointed out that he was actually probably pale when I saw him last and that his color was good, much better than it had been.  I was there through shift change, so I was able to listen in on the nurses' bedside review. Also while I was there, they came in to take a chest x-ray to confirm the placement of his endotracheal (ET) tube and see how his lungs looked.  I got to change his diaper and talked to him for a good while.

One of my favorite nurses, Valerie, came on this evening after having been gone almost a week.  She is one of Cayden's primary nurses and just makes me feel so comfortable with her bedside manner, the way she talks to me, and the way I see her care for our little baby.  I'm so glad to know she's there with him now.  She is a mom herself and I know in my heart she treats him like she would want one of her own treated.  Hopefully Cayden (and Jason, Jamison, and I too) will sleep well tonight . . .

Saturday, December 4, 2010

A late-night visit to the NICU

Well, I don't know if it helped or made me feel worse, but I just got back from visiting Cayden.  Again, the good news is that he is stable and tolerating all of the treatment they've given him.  It's just so hard to see him with even more tubes and wires and know he was poked and prodded even more today, all when he's not feeling well to begin with.

Ironically, now that he's intubated and doesn't have the CPAP mask on, I can see his face better.  But everything else seems to be covered up and/or bandaged - he's got a new IV in his hand, one is his scalp, and an arterial line in place. 

While I was there, I spoke with the doctor and nurse and they were encouraged that he's been responding well to everything they've done so far and looks much better than he did earlier today.  They reminded me that setbacks like this happen, that preemies are especially prone to infections, and that unfortunately, this may not be the last time he fights an infection while he's in the NICU.

The preliminary lab results for the blood cultures won't be back until tomorrow, but the lumbar puncture showed no evidence of meningitis.  They're treating him with antibiotics and giving him blood components to help replace what they've taken out with all of the blood draws.

With all he's been through today, I couldn't hold him, but I did get to rest my hand on his back and touch him.  Despite everything, he looks like he's comfortable and getting some much needed rest.

A setback

I'm feeling hysterical inside but I will try to convey what we just heard from the doctor and nurse . . .

I guess I should start with what I'm trying to keep in the front of my mind:  he is stable and looks much better than he did earlier in the day.

Sometime around 9 this morning, they noticed that Cayden was "desatting", or having drops in his oxygenation.  He's had these off and on since birth, but something about these episodes made them think something else may be wrong.  They're concerned he's acquired some type of infection.  They've intubated him, which means he is on a ventilator that is doing the breathing for him, taken a chest x-ray (which looked normal), and drawn a lot of labs to determine what may be wrong.  They've started him on antibiotics and discontinued giving him breast milk. 

Will post updates as we get them.

Welcome to the world

Cayden Ferguson Inzer came into the world 15 weeks early on November 19th, 2010.  I've never done one of these blog thingies, so I'm not sure how much information is appropriate to share, but there have been so many people concerned and wanting to know updates that I figured I'd give this a try.

For those who may not have heard the story, my water broke on Thursday, November 18th while I was simply sitting on the stairs talking on the phone.  After a trip to my doctor's office, we were sent to the hospital where I was admitted.  An amniocentesis determined that I had an infection - chorioamnionitis - which meant they had to deliver the baby right away.  They induced me and we were on our way . . .

By 8 a.m. the next morning,  my labor was progressing satisfactorily.  Dr. Guggenheim came by on her way into the office just to check to see how far I was dilated and that's when the craziness ensued.  She felt a hand . . . and then the umbilical cord.  A prolapsed cord as it's known is about as serious of a complication as you can have, one that requires immediate action and delivery of the baby.  The umbilical cord is the baby's life line - if it's compressed for any amount of time, the baby has no oxygen and can die within minutes.

Before I could absorb what was happening, there were countless people in the room.  Dr. Guggenheim was literally on top of me in the bed trying to hold the cord up out of the way while doctors and nurses disconnected IVs and prepared to take me to the operating room.  In all of the frenzy, I lost sight of Jason.  Turns out he was at the head of the bed, helping to push as we rolled through the hallway to the OR.  The only way to describe the scene and what I was feeling was organized professional chaos.

The next thing I knew, a drape was put up in front of my face and Jason was by my side as they cut me open and pulled out our baby.  There was a team of neonatologist standing by who took over working to get the baby's airway secured and checking his other vital statistics.  It seemed like forever, but they finally rolled him by my head so I could get a look at him before they whisked him off to his new home in the NICU (Neonatal Intensive Care Unit). 

From the beginning, all of the doctors and nurses have been amazed at how well he was doing.  He never had to rely on a ventilator to breathe.  His weight was more than expected for his gestational age.  He was a fighter, feisty.  All of these were positive things for him despite the fact that he was 25 weeks and a few days old. 

I was in the hospital four days recovering from the C-section and it took us all of those four days to come up with the perfect name for this little guy.  We wanted a name with significance, something that defined him and the situation he was thrust into.  We also thought it would be nice if he had my initials - our first son, Jamison, has Jason's initials.  After much searching, we decided on Cayden Ferguson.  "Cayden" is thought to be derived from a Gaelic surname meaning "battle".  "Ferguson" means "man of strength".

They tell us it's going to be a roller coaster, a long road ahead, and to be prepared for setbacks along the way.  It's the most difficult thing I've ever experienced in my life.  Cayden is just over two weeks old as I type this first entry and it's been positive steps forward so far:  he had been tolerating breast milk and gaining weight (albeit we're talking grams, but it's better than losing!).  He had a head ultrasound a couple days ago - one of the big concerns for preemies is bleeding in the head during the first ten days, but his ultrasound came back normal.  He's been back and forth between CPAP, SIPAP, and high-flow oxygen (all different types and levels of assistance to help him breathe), but still breathing on his own nonetheless. 

But we just got that phone call we've been dreading - one with our first round of bad news and setbacks.