Miles' Journey

CA Tax dollars at work

2009-07-18T21:27:00.000-07:00

Thanks to his early birth and Intraventricular Hemorrhage, Miles qualified for a state-funded developmental follow up program. Once every six weeks or so, a nurse comes to our home to do an evaluation of Miles to help catch any delays head on. And while CA is pretty much broke, our benefits are still intact, for now.

On Friday, Judith, the nurse, came for her fourth visit. She was last here just six weeks ago when Miles had first mastered the roll over. As he sat up in my lap, she tested him with small colored squares. He grabbed them both and brought them to his mouth. She rang a bell outside his ear, he looked toward it. And very quickly, she noted. She gave him a black and white ring and watched him take it from one hand to the other and then to his mouth. She measured his head, noted his height and weight and in between it all, got taken by his ear to ear grin. "What a good looking boy!" she cooed. After she watched him on his back, his belly, being lifted up, being laid down and back on my lap.

Her evaluation: Miles is doing fantastic. No delays whatsoever. Just a normal 5 and a half month old. And for the first time, our adorable five and a half month old made the 7 month (his actual age) growth chart. Weighing in at 15.5 pounds, he is at 5% mark, but at 27 inches long, is at 25% for height. While we know how extraordinary he is, the reassurance that he is indeed progressing like any other baby, is always well-received.

I asked Judith if given the current economic climate we would even qualify for the program now. She paused before responding. The prematurity might be borderline but with the hemorrhage, we'd probably still make the cut. While the whirlwind and fear of the NICU feels like eons ago, she reminded me of just how close we came and how many more challenges Miles might have faced.

We will see her back in September. Given the state of California finances, I feel almost guilty for this incredible service but thankful we are that Miles has this benefit. If things were not going so well, I know we'd be able to get him the right resources.

Miles is back!

2009-07-03T09:01:00.000-07:00

Long time, no post and now that Miles is sleeping through the night, I can no longer claim sleep deprivation as an excuse. And with him getting more delicious every day, it is almost a crime not to share his advancements with his fans. So with that, his blog is back.

I'll start with an update on the last ...ummm 2.5 months since the last post. At 5 months corrected (7 months actual), Miles is close to 15 pounds and thriving. Last visit to the doctor, she said there are no outward signs he was a preemie. Yeh! He is rolling over, grabbing for anything that comes close to him (mom's hair and glasses are favorites), babbling constantly and my personal favorite, laughing.

As I mentioned, he is sleeping through the night which came just in the nick of time. Before that, he went through what only moms will tell you is the 4-month regression. Basically the sleep habits you have learned to manage (only one wake up a night), turn into wake up calls every 2 hours. Your previous horror at the thought of letting your child cry it out evolves into an appreciation and question why you didnt try it months ago. Maybe Miles is just that smart but he chose that very moment to progress and within three nights was sleeping from 7;45 pm to 6:30 am. Even if he wakes up, say at 4 am, he puts himself right back to sleep without even a cry. And when he wakes up at 6:30 am, we only hear happy cooing. When we go in to get him, his face lights up into the most perfect smile - he too likes a full nights sleep!

Miles hits the big 1-0

2009-03-19T21:22:00.000-07:00

Long time, no update. Sorry to those that still might be reading this but well, it takes time and so much energy to care for an infant and when I have that spare 30 minutes at the end of the day before that last feed, blogging is the last thing I want to do. But you dont read this to hear what I want, its for Miles that you bother to visit this page. And without further ado, the update...

MILES IS OVER 10 POUNDS- over 3x his birth weight! He had us holding our breath these past few weeks as his weight trajectory plateaued around 9 pounds 11 oz. So close, yet so far and somehow 10 pounds seems like such a huge achievement. Turns out, our little guy is a bit of a lazy eater. He takes his time, lolls over his bottles, suckles on the breast. We think he has had enough and close up shop. Not so fast anymore and with vigorous effort, he made the jump and his weight gain is back on track. Miles is with the program now and is embracing cluster feeding in which he will feed for a couple hours non stop. Trust me, its not a pretty sight - me on the couch, under siege by my 10 pound son, remote in one hand and Dave bringing me food and water. They say it happens when he goes through a growth spurt so will see how much he weights next week....11 pounds?

He is now 6 weeks old and FINALLY getting past some of the forever newborness. Yes, its cute but remember we have experienced this for 16 weeks. Our first 4 weeks with him at home were really just practice...extra time to wait for a smile, coo or some kind of recognition. We are seeing his first perfect smiles that just melt your heart. His big blue eyes gaze into ours, show happiness when tickled and frown deeply when something is not going his way.

To any random stranger, he is just a happy and quite adorable 6 week old baby. It is only us that know he gets monthly Synagis shots to decrease his chances of getting RSV and worry about where we take him, who might try to touch him and what germs he might get exposed to. Is it worth it? The good news is that the last lingering remnant of his early birth - the Intraventricular Hemorrhage is now completely resolved. I repeat, quoting from the radiology report, completely resolved which according to the pediatrician, is really, really good news.

So, our little guy is just a normal 6 weeker and we are just your average parents of a newborn and though still sleep-deprived, we (mostly) have it under control.

Going rogue

2009-02-13T11:15:00.001-08:00

Let me start by saying, there are lots and lots of books out there. Add to that, the great lactation consultants and doulas that you can hire to actually show you how to do the things in the book. To implement the EASY (Eat, Sleep, Activity, YOU) method, to show you how to properly use the 5 S's and most importantly, how to get your baby to latch onto the boob (its not as easy as we are led to believe.) And if that's not your style, you can also find Attachment Parenting (Dr Sears) helpers as well.

All of these methods tell you what your baby should be doing at each stage, based on week, whats normal, etc. For example, babies go through growth spurts at 3, 6 and 12 weeks. In those times, they eat more, often up to every 2 hours or as one friend experienced, straight for 8 hours, giving her a 20 minute break once to pee. But I digress...my point of all this is that all of these great, well-researched, well-intentioned methods take one major point for granted. Age!

Miles is now 11 weeks old (and well over 8 lbs if you wanted to know) but according to the doctors, just one week corrected. He has been bottle feeding for over 7 weeks, breast feeding for 6 and on a feeding schedule, well since he was born. So why is this a problem you might ask? Well, he is a newborn now. He is fussier, a lot fussier, he wakes up more during the night, has longer periods of "quiet alertness" all of which means, we get much less rest. And in our despair, we look to the very books and consultants that should be able to help us.

And from the classes at Day One to the $250 visit from the expert lactation consultant to the books that line our shelves, it is ever more apparent that when it come to preemies, we are on our own. No one can quite answer the questions like, "so if a full term baby can start sleeping through the night at 4 weeks, what does that mean for Miles?", "Since his stomach is the same size as a full term baby, should he eat on demand now, even though he was on a schedule before?", "And if so, how do we put him on a schedule again?" and so on.

So, we've gone rogue. We are making up our own rules, mixing up some Karp, some Weissbluth, Dr. Sears, the Baby Whisperer and the Nursing Mother's Companion book. We switch out the bottle and breast feeding, we sometimes let him cry, other times, he sleeps on my chest (if its the only way I can sleep), we offer the bottle after breast feeding and sometimes we don't, we keep him to a 3 hour feeding schedule unless he wakes up more often, we offer the Activity before the Eating (key element of EASY), taking it all a day at a time, watching and learning from our amazing son.

In short, we rely on ourselves. But I'd be lying if it werent for a huge heap of advice from the mothers of preemies who've come before us. Thanks to Amy, Jessica, my girls from the Pump Room, and Inspire Preemie message board.

And for the record, it seems to be working. We are just as tired, frustrated and elated as any other parents of a newborn.

Finally - full term!

2009-02-06T10:54:00.000-08:00

Well, I can stop saying, "he should still be in my belly." On Wednesday, Miles in fact, should have been born. Weighing in at 7 lbs, 10.5 ounces, he is just your average newborn, except that we have just had 10 extra weeks to get to know him. We celebrated with cake, champagne and a few close friends.

I thought when we left the NICU, we could just put this whole thing behind us. Miles was thankfully quite healthy and to us, he was just our new baby. Not so fast. Forgive us for being defensive. I am tired of being told he is small. Comments like, "oh, what a peanut," or "look how tiny" are old. When you have seen your son weighing 3 pounds, he seems like a fricking giant to you.

Life with a preemie is complicated. For starters, what do you say, when someone asks his age? Umm. "Well, he is two months old but he was born early so is still really small. But he is really healthy." How early was he born, they might ask? 30 weeks, wow, he is OK, right? Repeat this conversation with the guy in the park, the mom in the mothers group at Day One, etc.

Then there is the realization that I will never, ever be just a normal mom. Start out with the ritualistic Mothers Group. Golden Gate Mothers Group creates groups of moms by birth mom, giving moms a wonderful outlet to share experiences as their children grow up. I'd heard about this from many friends and look forward to the new friendships I might make. But there is a hitch. Which month to join? The November group when Miles was actually born or the February group when he was supposed to arrive. Arrive at the November group with a baby that looks like a newborn and listen while mom's discuss issues of a 2 month old. Not a fit. Or go to a February group where mom's are still recovering from delivery and the first days at home. Say what you will, but we just don't fit in, even if the other women are wonderfully accepting. We and Miles started off on a very different path.

Maybe that is why on his actual due date, I really look forward to going back to the NICU. Yes, you read that correctly, go back to the NICU, for a visit. There, he was oohed and aahed over, noted for his chubby red cheeks and large blue eyes. Although they said, job well done, mama, it is the nurses and doctors there that we must thank for his health. And there in the NICU, our story is not exceptional, sad, traumatic, worrisome or any of that. It is just par for the course. Unremarkable, if you will. Absolutely normal.

In time, we will make peace with the outside world and his age. By two years, he will be caught up with other November babies and the whole experience will be a faded memory. But for now, when asked his age, we just smile and say, ten weeks. No explanation needed.

Just like any other baby

2009-01-30T07:43:00.001-08:00

Three weeks at home and over 7 pounds but still a week before his due date. What does that mean? He is just like any full term baby you bring home from the hospital. We've just had a few extra weeks of warm up. And as Miles nears term, he becomes well, less like that sweet little quiet baby we got to know so well. He cries louder, fusses longer, refuses to sleep, and wakes up before the alarm during the night. All this makes it much, much harder to keep to our schedule (thank you for NICU for that!) and reduces our already limited sleep.

This is the first full week Dave has been back at work, leaving me home to care for Miles all day. How hard could that be, really? I should have time to go to the store, organize our finances, put together Miles' baby book, clean the house, and of course, make dinner. And somewhere in there, take a nap to make up for the 4 hours of fractured sleep I get each night.

Ah, you might say, "Welcome to parenthood!" We get it and finally all of those books and pieces of advice make sense. Last night, we watched, The Happiest Baby on the Block, a gift from Susan and Eric West. At the time, they told us of the Five S's and we tried to make sense of it but as they said at the time, watch the DVD after the baby is home and it will be very clear to you. And indeed, they were right. The 5 S's for the record are: Swaddle, Side or Stomach, Shush, Swinging, and Sucking - all meant to mimic the womb environment. After a few days of our previously content baby overcome by screaming, gas, and basic fussiness, he was calm in minutes and slept peacefully during the night, until it was time to feed him. And we had to wake him up!

So, as the week ends, things are looking up. I successfully took Miles to the eye doctor (his eyes are just fine!), visited Day One for a weekly weigh in, and enjoyed a long walk in Golden Gate Park with another new mom I met through Golden Gate Mothers Group, learning the truthfulness of another repeated piece of advice - when all else fails, put him in the car seat!

Still to be done - the cooking, cleaning and organizing.

Holy Sh*t, he's HUGE

2009-01-21T20:33:00.000-08:00

In the words of the doctor, we are doing GREAT. So great in fact, she thinks we could write a book of our process. Its that good. And why, you might wonder, are we doing so great at...well, since our last visit to her just 6 days ago, Miles gained 13 ounces bringing him up to a whopping 6 lbs 12 ounces. At this rate, our kid will be well over 8 pounds on his due date, just 2 weeks away. Hard to believe at this point, I should still be pregnant and in my last week of work.

The pictures featured are just one example of what a difference its been - the first taken just a week after Miles was born when he weighed around 3 pounds. The other, on Tuesday at almost 6 pounds, 12 ounces, over double his birth weight.

All of this makes the sleepless nights, endless bottle washing, pumping, feeding, diapering, etc completely worth it. Our boy is thriving...despite that well, he is a just a wee bit constipated. So maybe those extra ounces could be stored up crap. In the NICU when the weight of his stool was charted, he once had one over 1.5 ounces so its reasonable that it could add up to a few days could add up to a few ounces. Fortunately, even this according to the doctor is not cause for concern. Some poor babes even go seven or eight days at a stretch. As long as he is not in pain, its fine though we are encourage to massage his belly and after a few days, stick a vaseline-coated Q-tip up well, you know where...

His progress even made us forget about that incident a few nights ago. His unexplained fussiness, his full-on rooting, his near crawling up my chest made no sense. We contemplated calling the after hours doctor. Hadn't he just been fed? We keep a detailed record of how much he eats, when, when he poops, pees, how he sleeps, fusses, etc. Blame it the lack of sleep but it took us a good 30 minutes before we realized that indeed, we, well, forgot to feed our child. Sure enough, a 4 oz bottle of my finest milk put him to sleep.

Next week, Dave goes back to work so it will be another adjustment but for now, we are glowing in our little guy's growth and again feeling so fortunate for him and his health.

Please just don't call him small

2009-01-17T19:28:00.000-08:00

Its been 8 days since we brought Miles home. Eight days for him to find his voice, put on a half of pound and for us to figure out our own schedule, absent the hospital regulations. Everyone has an opinion - everyone that has kids, that is - and each time, I need to remind someone that Miles is not like any other baby. He is still just 37 weeks old, or minus 3 weeks corrected, and if all had gone as it should, I would be bitching about how big and fat I was.

The same rules that apply to term babies dont apply to preemies. My sister reprimands me for counting the ounces he drinks - she thinks the hospital brainwashed me and he need to be exclusively breastfeeding. He also needs to gain weight. More than one person has noted how small he is. I feel like a broken record saying, "He's huge to us!" with a big smile on my face.

Miles has grown quickly to not only enjoy but to demand, his cuddle time. Put him down early and his previously not so shrill cry pierces through the house, quieted as soon as his head is comfortably on mom or dad's chest and little hands grip for dear life. This is usually in the middle of the night and I have taken to hold him on my chest in bed, working hard to stay awake. Most people would say that babies need to learn to cry it out some but again this is where preemies differ. For the first six weeks of his life, touch was more often than not associated with a nurse who handled him as a job not love. Touch meant shots, cold wipes, temperature taken, monitors moved, tubes inserted in his throat and only once or twice a day, the warmth of me or Dave. So for now, on doctors orders and at least until he is term, we have carte blanche to cuddle, coo and love him as much as we can, crying or not.

And as you can tell from the pictures, there is a lot to cuddle and coo at. With every ounce, he comes into his own even more, becoming more delicious and sweet.

Where does the day go?

2009-01-14T13:23:00.000-08:00

Really how hard can it be to care for 5 (almost 6 pound) little infant? How much gear is really necessary? How can it possible wipe out two professional, in-shape and somewhat logical adults? Welcome to Miles' world. We are on day 6. Miles is winning and we are eager co-conspirators against our own best interest.

We left the hospital on a schedule. It worked well. He ate every three and a half to four hours. Before each feed, we'd wake him up if he wasn't rooting (he never cried!), change his diaper and then breast feed him or go straight to the bottle. Time permitting, we cuddled as he fell back to sleep and then back into the crib until it started all over again. Ah, the good old days before a ten minute cuddle became two perfect hours, when the industrial strength swaddle (thanks to veteran nurses) lost to the $25 organic Kiddopatamus swaddle aka straitjacket became a toy for Miles to escape (and with great fanfare) when his cute sounds once white noise in a hospital nursery each became cause for concern for his ever present parents. Miles is now in charge and we are along for the ride.

Whatever it is we are doing, he is at least thriving. As of the doctors appointment on Monday, Miles picked up over 5 ounces since leaving the NICU putting him at 5 pounds, 12 ounces. He is steadily eating more each time and thanks to the wonder of the nipple shield, taking to the breast a couple times a day. Each day, we are amazed at his growth. His head has become a weight to be managed as we carry him to and fro, always, always worried about supporting it. Even his little ankles are now a little pudgy - the hospital bracelet (yes, I forgot to cut it off) was nearly cutting off his circulation this morning.

All of this growth is in part in thanks to the houseful of products at his service. The Moses basket in his bedroom serves as his daytime retreat. For feedings, he lounges on the Boppy, covered in any one of his receiving blankets to catch up his drool. The newborn Boppy provides comfort in between sessions and then in the evening, he goes down next to Mom in the co-sleeper. At any given time, we know he is breathing and the exact temperature of his room, thanks to the AngelCare monitor. And just in case, he holds his breath for 20 secs, an alarm will go off, loud enough to scare him to take a breath. Should he need a walk, his carseat comes equiped with its own fluffly blanket (not that its needed this week) and sunshade to protect him from all the elements. .All of this comes with 24 hour service of washing and drying his bottles, fortifying and pumping his milk and changing his dirty diapers at every whimper.

And in case you were wondering, we are loving every minute of it.

Our little boy is home!!!

2009-01-09T13:05:00.000-08:00

Yesterday was a big day with Miles' circumcision and his first night without the evil monitors and accompanying cords and under the careful watch of his parents.

Who knew a circumcision could be so hard to arrange? Apparently, if you are not doing a bris, it is the job of your OB to perform the rite. But if you deliver 10 weeks early, obviously circumcision is not done right after birth like for full-termers. So when we started down the bris route, the hospital put us in touch with a moyel who also happens to be an OB. However when we decided to just circumcise, the moyel told us to check with my OB who hemmed and hawed and then after multiple phone calls and precious days, she convinced another doctor in her practice to do it.

So yesterday at noon, under the careful knife of Dr. Horowitz and the Olympic Circumstraint, with mom watching on, Miles became an MOT. Fortunately with a circumcision, they use lanacaine to numb the area vs a bris when its just some sweet wine on the baby's gums. And Dr. Horowitz even threw in the prayer, making it more than just the cutting of the foreskin.

Last night felt like deja vu as Dave and I trekked back to the hospital around 10 pm, the same time we went in when I had preterm labor. We checked into our room on the post partum floor, where I had been after Miles was born. And this time, we were those people with a baby in their room. Chrissie, our favorite nurse, removed all of Miles attachments - oh, how much easier it was to hold and move him around!, weighed him for the last time (a whopping 5 pounds, 7 oz), stocked us up with diapers, wipes, swaddlers, burp clothes and medication for his circumcision and then off we went down the hall, where she left us alone with him for the very first time.

Our first thought....now what? And to help us, Miles pooped us and wet through his last remaining clean outfit. After changing him, the clothes and the bedding, he rejected the breast and downed 90 mls (3 ozs) from a bottle in 15 minutes, pooped again and then finally went to sleep. I still had to trudge back to the NICU, pump even more milk for him and finally got to sleep by midnight, giving me two hours of sleep before his 2:30 am feeding. And again, he rejected the boob, opted for 3 ozs in the bottle and while he and Dave snoozed, I pumped once again. When Chrissie arrived at 6:30 am and offered to take him off our hands one last time, we jumped at the chance.

And somewhat sleep-deprived, we brought him home around noon, noting the songs played on the radio - the first music of Miles life. Neil Young's "Long may you live" was first. How fitting. As we unloaded him from the car, a woman with a stroller walking by asked if we were bringing a new baby home. I choked up when I said that it had been a long time coming.

Finally, after 45 days in the NICU, Miles has made it home. We could not be happier and are transfixed by his presence. Baker is curious and so far, aloof.

In his big boy seat

2009-01-08T07:31:00.000-08:00

We are now one day away. Miles passed one of the last hurdles, the car seat test. He liked it so much in fact that instead of staying in it for the requisite 1 hour, he slept soundly for two and a half before it was time to change him. The last thing is for Miles to get circumcised which will happen some time today. We opted not to have a bris for him as he won't be able to be around many people for a few months and will do a naming ceremony when he is 6 months corrected age (based on his actual due date of February 4th which would make him minus 4 weeks old right now.)

Tonight, Dave and I will room-in with Miles at the hospital. He will be taken off all the monitors - hooray! - and the three of us will be together for once! It will be up to us to wake him up for his night time feedings and changings but have the benefit of a nurse nearby in case there is an issue. Tomorrow, he will get one last exam and then we will take him home by noon time.

San Francisco friends - we'd love for you to come meet our little guy but don't even think about it if your nose is as much as running! As strong as he is to us, remember he is still minus four weeks old!

Our big boy

2009-01-07T04:53:00.000-08:00

You might think we were upset that Miles had to stay a few more days in the NICU. Quite the contrary, it has turned out to be a very good thing for all of us. If he had come yesterday, we would have handled it and it would have been fine. But these extra days have given us time to relax, milk the most out of the nurses and for Dave, finish up work so he is able to take a couple weeks off.

Miles has a few more days to mature, which like time in the womb, every day counts! He becomes more stable every day, and the ever ominous oxygen sat levels stay in the lofty 90s even when he eats. Back when he was learning to nipple feed, we'd often see them plunge to the 40s because he forgot to breathe when he swallowed. And thanks to the encouragement from a crew of amazing nurses this week, I am breastfeeding Miles at every feed for as long as he can go. Last night, he stayed on the boob for a long 45 minutes and only needed half of his bottle afterward to satiate himself.

Today is the carseat test. Miles sits in his carseat for an hour while still hooked up to the monitors to ensure he doesn't desat or have any Brady's. Another family's scheduled departure was thrown off when their little girl had a Brady in the carseat. Fortunately that kind of Brady doesn't "count" except to figure out a better position for him in the seat.

Miles is now 5 pounds, 4 ounces and looks like a different baby from the one we met 6 weeks ago, except for his beautiful blonde hair.

Be careful what you wish for

2009-01-05T19:17:00.000-08:00

Yes, I wished for him to come home. But I also wished that he would come home in February after I carried him to full term and that didn't happen. I wouldn't wish harm on my son, really but I might have whispered that a Brady here and there was okay. I wasn't really serious. He should have known I was kidding. But like a good son, he delivered and good enough to keep him in his warm corner in the NICU until 7 Brady free days pass by. Since he had it on Friday, this Friday is the new D-day to bring him home.

Are we frustrated? A bit because the Brady happened on Friday night but today was the first time, we heard it was an issue. We spent the weekend frantically taking care of last minute details and training. And then, Monday morning, its another work week and a new year and the full time docs are in. Apparently the weekend docs feel no need to check in with you or carefully review his chart. You'd think we'd have figured this out after 6 weeks! So our doctor for the week - Dr. Nancy, who is very nice, made the call. So now at least there is time to get him circumcised and yes Dad, he is big enough now.

On the bright side, we are ready so we can enjoy these hopefully last days. We can stock up on groceries, go to a movie or two and as always, spend long hours at the hospital, feeding, changing, and just staring at Miles and for me, more pumping!

And in case you were wondering, the umbilical cord issue is resolved and Miles is now a fighting 5 pounds, 3 ounces. So big in fact that he outgrew two of his preemie shirts.

The last days

2009-01-04T22:11:00.001-08:00

If you have been following the blog, you know that one Brady will hold Miles in the NICU for another week. But even that is not so clear He had a Brady today. It was a mild, self resolved one that lasted only 5 seconds but still it had to be charted. It shouldn't keep him but we will know more tomorrow. And now there is the umbilical cord. The cord stump should dry out and fall out somewhere between 7-10 days after birth. He has been in the NICU for 42 days and still has a stump yet until today, no one thought much about it, other than telling us we cant submerge him during a bath. Turns out, it was sutured in there because he had some bleeding when he was born - the same bleed that took 10% of his blood and required a transfusion. So they took out the suture, the stump fell off and the remaining stub was wet. Not a good sign and according to the nurse and doctor on duty, they really arent too sure what to make of it. We have to wait for the surgeons tomorrow. And until then our boy has been undressed and put back in the isolette where they can keep him warm. Maybe I shouldnt have said so many times how lucky we have been!

So assuming there is really no issue with the cord and that Brady isnt counted, he will come home on Tuesday. You know how the last days of vacation feel? Combine that with the feeling of last minute cramming for the most important exam of your life. That is where Dave and I are right now. For the last few days, we have been rushing around getting all that we need for him at home, taking detailed notes on how to feed him, how often, on the breast or not, with what fortifiers, vitamins, and also trying to take advantage of the freedom of not having a newborn in the house. And we still need to learn how to give him a bath but there is that issue with his umbilical cord.

But we are ready. The cosleeper is set up, the changing station is stocked, the clothes are washed, the sheets are clean, the bottles are sterilized, and thanks to our favorite nurse, Chrissie, we are loaded up with hospital goodies. Tomorrow night, we will room in at the hospital. The monitors off, Miles will finally be with just us but with the nurses just a call away.

I won't jinx it by reminiscing about the NICU and giving a post mortem on the best and worst nurses and doctors. There will be plenty of time for that. First, lets see about that Brady, his umbilical cord then he needs to be circumcised and pass his car seat test..and we need to find our camera!

Could he really be ready?

2009-01-02T18:56:00.001-08:00

First things first, Miles finally hit the 5 pound mark today by just 2 grams! But on to more important progress....

Is it so bad to want just a few more days? That, when the doctor said "a couple weeks", we countered it with the nurses caution not to expect him home until much closer to his due date. That we never imagined the fifth Brady Miles had on December 29th would be his very last. And that was BEFORE they took him off the caffeine. That we never considered that when push really came to shove, insurance would call the shots on when Miles was ready to go home. The thing is after he can maintain his body temperature, eat from a bottle and go 7 days without an A or a B, there is no medical need for him to be in the NICU, even if he is not even 36 weeks.

So if you have not figured it out by now, Miles is coming home and soon, very soon. And each day, it gets sooner. On Monday, we thought it was end of next week. It seemed like a safe bet. He was still having apneas and Brady's. On Wednesday, Dr. Lewis told us to be prepared for next Wednesday and the social worker scheduled our discharge meeting for Friday. On Thursday, the doctor on call cautioned it might be as early as this weekend based on his last Brady. Then today at our meeting, it was tentatively set for Tuesday, January 6th, when he will be six weeks old and just one day shy of 36 weeks.

You might ask if we are excited? That is just one of the emotions. With all of this time since he was born, we should be more than prepared but somehow it feels like it came out of nowhere. We have been spoiled in the NICU. The nurses measure and prepare the bottles. I just show up, change his diaper, take his temp, grab a clean pillow case and sit down to feed him. When he doesnt burp or won't eat, I ask for help or another nipple to try and when all else fails, they take over. Bottles, nipples, storage containers, vitamins, fortifiers, diapers, wipes, swaddles, hats, clothing...its all provided and washed for you. My point is, yes, we are very excited but nervous, like any first-time parents bringing their baby home. How are we going to take care of him without a nurse on hand? That he is a preemie makes it all the more scary!

All the same, we are looking forward to having him here....finally. No more monitors, back and forth trips to the hospital, endless pumping, parking tickets, etc. Our 5 + pound little man will take his place on 26th Avenue and before we know it, will be chasing Baker around the house, pulling his ears and tail, keeping us up all night and generally wreaking our havoc on our lives.

A word of caution, one Brady resets the count back to 7 days....

Who knew eating could be so hard?

2008-12-30T14:49:00.000-08:00

Well, its Tuesday and he is less than 3 oz away from 5 lbs. At this rate, he will be there by Thursday, so Dave will win the bet. Every day, he looks more filled out and even has cute, chubby cheeks. And with size, it is clearer who he looks like and its definitely Dave, save for the blond hair.

We are now in the home stretch. We've scheduled the "what to know discharge meeting" with the social worker and doctor for Friday. He is no longer receiving caffeine (helps to reduce A's and B's) so all he needs is 7 consecutive days without A's and B's. And then of course, he needs to be able to nipple/breast feed all of his feeds.

And that may be the hold up. Who knew the coordination of eating could be so hard? Miles continues to struggle with sucking, swallowing and breathing. He is improving and now does most of his feeds on the bottle but it takes A LOT of work and coordination. And then still, there are times, he just can't get his act together and struggles to figure it all out and scaring me along the way. So even if Miles manages to grow out of his A's and B's, he's got to figure this out so we can take him home.

We can't wait to get him home but we are realistic. He will still be small and have preemie issues for the first months. We will have to be extra careful of who touches him, where he goes and how he breathes. And remember, we have been able to track him by monitor for nearly 5 weeks....how will we know if he desats without one?

In the meantime, Miles will meet Grandma Blatt tomorrow, the only one of his grandparents he has not met. And later this weekend, Uncle Fred and Aunt Anna will stop by for a visit.

Growing fast!

2008-12-27T15:13:00.000-08:00

Wow - Miles is now 4 pounds, 10 ounces! Dave and I have a bet when he will reach 5 pounds, just 150 grams (6 oz) away. Last night, I said Friday, Dave took Thursday but after his gain of 50 grams last night, I think Tuesday might be a better bet. Remember Miles was born at 3 lbs, 5 ozs and quickly fell to under 3 lbs so for us, he is looking quite big! Just check out his fat cheeks in the photo of him yawning, even fatter than the previous photo from just 2 days ago and a giant compared to the other photo from 18 days ago!

To my rejoice, Miles is doing much better with his bottle feeding. Thanks to an incredible and patient nurse, Hannah, he was able to finish an entire bottle for me last night. However today, we had an unexceptional nurse, who preferred chatting to taking care of Miles and he did not do so well. Yes, I know its not fair to blame it on the nurse but there is a correlation when someone is working with you to how well Miles does. Regardless, he will not come home with a nurse (though Dave and I would like to hire Hannah) so we need to be able to figure it all out.

On another positive note, Miles had another head ultrasound yesterday and thankfully, the blood from his IVH is resolving as it should. We both breathed a sigh of relief as this was the one big issue hanging over us.

Now, lets just get him to suck, breathe and swallow all at the same time! And grow past his A's and B's so we can bring him home.

One month old!

2008-12-26T06:12:00.000-08:00

Christmas in the NICU. Not what we had planned. We tossed around the idea of a long weekend in Seattle visiting friends. Good thing we didnt do that - we'd be trudging around in a foot of snow. Alas, I (Dave is off limits to the NICU, thanks to his cold) spent several hours with Miles on his first Christmas with wonderful nurses who were pulled away from their families. Thanks to the current low number of babies, it felt like just a slow day at the office.

Today was also Miles one month birthday and 34 weeks gestationally. That means, he is finally around the age where he is able to suck, swallow and breathe all at the same time. In other words, drink from a bottle. All that practicing, we have been doing should start to pay off if not now, in the next week or so. Unfortunately for us, white males are usually the slowest to mature in this area so he might just take his sweet little time.

And with home in sight, this is where I begin to get frustrated with his progress. It is only natural. One day, he drinks a whole bottle, the next, he get through 5 mls and desats ten times, sending my heart rate through the roof. I am patient. He will do this in his own time. It is so much work for our little guy. You can see it in his face as he concentrates on the bottle, his brow furrowed as he sucks on the bottle, breathes and gulps, trying to remember each step. Then after 15-20 minutes, his eyes close, he takes the bottle lazily but can't remember to breathe when he gulps. That is the signal, he has had too much and the remaining milk is fed to him through a tube. And each time, I am reassured that one day, he will just pull it all together without a problem.

I remind myself that we have been very, very lucky. Miles is progressing beautifully with no major issues. For a baby of his age, it could have been very different. So he may take a bit longer to learn to eat but he will get there and will be home before we know it. And in the meantime, will get bigger and stronger every day - he is now up to a solid 4 pounds, 7 ounces!

2008-12-24T23:09:00.000-08:00

Time to learn the hard lesson of parenting...we are not in control. I should have learned this after giving him birth 10 weeks early, but well, I didnt. Now that the end is in sight, its just a little too easy to plan ahead. Two weeks says the doctor, well Miles has other plans.

Our big issue right now is feeding. Miles started to learn bottle feeding last week. We are no longer doing much breast feeding as the bottle is more important so we know how much he food he gets. So now, once per eight hour shift, Miles gets to try to feed from a bottle. And well, the results are mixed. As I have wrote a few days back, he started out with flying colors and after one try, even finished an entire 40 ml bottle. And now, he is more content with a half a bottle until he knocks himself out. Along the way, he forgets to breathe sending the monitors and his parents into a frenzy. We are assured this is all normal and in many cases, it just all clicks one day. Lesson learned. Its on Miles' timeline, not ours.

Fortunately, he is not burning all of his calories on the hard work of eating. He is putting on weight and now stands strong at 4 pounds, 6 oz or 2000 grams. As he fills out, I think he looks more and more like Dave with blond hair...an interesting combination!

Can you say 5 lbs?

2008-12-22T19:10:00.000-08:00

Miles is now officially 4 lbs, plus a couple ounces, and pushing hard for the big 5! There is no set weight for us to be able to take him home but something about 5, almost seems full term and maybe safer. If indeed he comes home in 2-3 weeks as the doctors suggest he might, he would still be 4-5 weeks earlier than his official due date of February 4th.

For a little guy, Miles continues to be ahead of the curve in most respects. They are now bottle feeding him 3-4 times per day and he is responding really well for his age. He is usually able to take more than half (and sometimes ALL) of his bottle before tuckering out. Remember, taking a bottle is quite a bit of work for him and we dont want him to work too hard. We want that high calorie breast milk to add fat to his teeny tiny body not get burned up in the eating process.

Miles still has the occasional A (apnea) or B (Bradycardia), mostly when he is sleeping or eating (all of that sucking and swallowing make him forget to breathe). Caffeine is one of the supplements given to preemies to support their breathing. But based on his progress, he will lose that jolt this week, making him do it all himself. Seven consecutive days of no A's or B's are required for him to come home.

We still battle the eternal frustration of different nurses, different treatment. This is especially annoying now that we are working on bottle feeding. Before, I had a very passive role. I held him skin to skin but needed the nurses to dress, undress, swaddle and take him in and out of the isolette. It was luck if I was there in time to take his temperature and change his diaper. Now, I am able to pick him up as I please, am asked to dress him, change him, take his temperature and bring in more clothes. As he is only bottle fed one time per shift, I make a point of calling ahead to confirm his feeding time and let them know I will be there.

This morning, I called ahead and found out his feeding time had been moved for some unknown reason. When I arrived, the nurse had changed his feeding tube from his nose to his mouth after I had specifically asked to have it moved to support bottle feeding. Kinda hard to get a big bottle in your mouth when there is an annoying tube in the way, dontcha think? Surprise, surprise, the nurse also was not helpful in bottle feeding and reminded me that he was really too young to do it. Again, I heard that preemies are on their own timing and parents cannot push them. Yes, we know this. And, according to her, it doesnt matter where the tube is. Well, he only managed to get 5 mls out of 40 and was fed the rest through the tube. Frustrating.

When I came back later, it was another nurse and another story but fortunately, a good one. She took out the mouth tube and again told me the nose was much better. I breathed a huge sigh of relief. And of course, with her help, Miles did a great job and was able to eat more than half of his feed from his bottle. Plus, we had a bit of fun waking Miles up (see pictures)- a requirement for asking him to work on the bottle.

The only benefit of all this conflicting advice is learning the many, many ways to feed and care for a baby and I need A LOT of help. We'll see what we get tomorrow.

A day of Miles-tones!

2008-12-21T08:07:00.000-08:00

Today was a big day for our little boy. It started with the night shift with his move to an open crib - this is one required step in his journey home. We no longer have to ask the nurses for permission or help in removing him from the isolette. Now, I am free to walk in and pick up him or just give him a kiss. This is wonderful but strange feeling that me, his mother, is suddenly trusted to move him around without the careful eyes of a nurse. Remember he is still very small and to me, very fragile. But I surprise myself and not only take him out but am able to maneuver myself and put him back in and wrap him up, all by myself...it was a Rocky moment. Now, Miles has to prove himself by maintaining his body temperature so he doesn't have to go back to the isolette. It is off to the side of the crib, just in case.

The second big step for Miles was that he finally reached 4 pounds (ok, he is 4 grams short but that is no more than a couple hairs so who's counting!). Can 5 pounds be so far off? I saw Laura's daughter Sophia today who at 4 mos weighs 16 pounds, a giant compared to Miles - but he will get there soon enough.

And if that wasnt enough, today Miles made huge progress in his feeding. Over the past week and a half, we have introduced recreational breast feeding but Miles still gets all of his calories from a tube or "gavage" feeding. In the past couple days, we have started introducing nipple or bottle feeding. When I spoke to Dr. Lewis today, she recommended pushing him more on nipple feeding than the breast. Why? Because that is the road home and the doctor even threw out a "couple weeks" timeframe (more on that later).

Preemies younger than 34 weeks don't have the ability to suck, swallow and breathe all at the same time so even now is a bit early. Even when they do, they get tired very easily and tend to have Brady's from all the work. Plus all that works burns calories which means less weight gain. Net, net, a delicate balance of how far to push a little one. But Miles continues to prove himself a quick learner. Thanks to a wonderful and patient nurse, Liz, I was able to practice nipple feeding him during our morning visit. For the first time, we got it all the way in his teeny, tiny mouth and my boy sucked, swallowed and breathed like a champ. Ok, so he only took 5 mls out of 39 before he tuckered out but progress was made. BUT, the next feed with another angel nurse, Chrissie, our kid took almost the ENTIRE feed with his bottle. Huge progress for a 33 1/2 week old.

33 weeks and growing fast

2008-12-18T21:21:00.001-08:00

Yesterday, Miles met the first of the Blatts - my dad and step-mother. Like Miles' parents, both Dad and Elaine thought Miles was just beautiful. Unfortunately, it was just a site visit and Miles just snoozed while they oohed and aahed over his little hands and very Blatt nose! They will be back for his bris (circumcision) sometime closer to his official due date in February. Dad was very emphatic in making sure that that the procedure not be rushed..."he is so small! you dont want any mistakes down there!" Thanks, Dad!

As of today, Miles is now 33 weeks gestation. If I were still pregnant, I would have another 7 weeks before he was born. He'd be well over 4 pounds and 17 inches long. Outside the womb in the NICU, 33 weeks (and his stable condition) is the point where things seem to speed up very quickly. Up until this point, Miles has still been in an incubator and feed exclusively (save for recreational breast feeding) by a tube. He will need to move past both to be able to go home.

So now the fun begins....and all in one day. When I came in today, the nurse said he would probably be moved to an open crib by the end of the day. She had also removed his feeding tube so we could try breast feeding a bit more seriously. After he slept through it, she gave me his first bottle. Doesn't hurt to try. Poor guy didnt even open his little eyes for the occasion, opting for the ease of being fed and sleeping at the same time.

Later, the nurse said we might want to just focus on the open air crib today and save the bottle for another day. Miles had other ideas and somehow pulled his feeding tube out mid-feed letting my hard-pumped breast milk spill on the floor while he snoozed in my arms. To add to the disaster, he filled up his diaper - which the nurse so very kindly asked me to change while she fixed the tube and prepared more food for him. We can't afford to have our growing boy miss a single calorie!

So we end this day, pretty much back where we started. He is still in the incubator and the tube is back in his mouth. Tomorrow, we will try the bottle again and maybe in a day or so, the open crib. From what I hear from other NICU moms, when babies get going on feeding, it feels like a matter of days before the doctors want to send them home...and often before its really expected. Dave is betting the second week of January and my guess is by January 7th but nothing is assured....as some nurses like to say, expect him home around his due date. That would mean first week of February. Only time will tell.

Moving West!

2008-12-16T20:31:00.001-08:00

Today, Miles was moved from NICU East to West. This means nothing to you but in the language of CPMC NICU, this is the last stop on the road home. And so tonight, we are happy!

As we have learned, the first stop is NICU North or the central station. This is where newborns come and stay when their needs are the greatest. It is loud and crowded windowless cavern with doctors and nurses rushing around and endlessly beeping machines. Once a baby is stabilized, they are moved on. In Miles case, he moved to the East after 4 days. The difference is night and day. The room is darkened, hushed and much more spacious, bringing the babies closer back to the experience of the womb.

And so the lore goes, when your baby is close to going home, he is sent to the West, which is located on the other side of the floor right next to the Well baby nursery (where full term babies go) and the post partum rooms. According to a nurse, this is where the most stable babies go. It is not a sign he will be going home soon, just that he does not require the same level of monitoring as babies in the East. But, there are always exceptions - babies go home from the North and East and babies in the West are moved back to the other wings.

But for now, he is in the West. A smaller room, filled with natural light, that immediately feels less urgent and scary. Most babies are in open cribs and moms and dads are at bedsides feeding from bottles. It is a great environment. The only letdown is that we left our neighbor and friend behind in the East and hope they will join us soon.

Miles is still in the isolette and still being fed from the tube. His doctor said that if his progress continues, he will likely move to an open crib by the end of the week and will try for a bottle within the next week. All great news!

The benefits of the NICU

2008-12-16T07:02:00.000-08:00

Really, there are some benefits of having a child in the NICU. You just have to look at it from a different angle. Most first time parents have a baby at full-term and two or three days later, leave the hospital, equiped only with what they learned in their newborn education class. Miles came long before we even had a chance to attend any kind of class so we were completely unprepared but fortunately, while he is in the NICU, we are also receiving expert one-on-one training on everything from diaper changing to CPR.

As we enter week three in the NICU, we are now more confident in caring for, dressing, swaddling and handling Miles, thanks to the patience of his many wonderful nurses. We have also benefited from other perks that help take the shock out of first time parenting and will make it easier when we do finally bring him home. A few highlights include:

- Access to lactation experts. Not only do they give you personalized advice on maxmizing your milk supply but also follow up (almost too much!) to ensure you are doing well
- Dedicated social workers who' make a point of seeking you out and then helping you navigate the NICU and explain your disability options and other needs
- Weekly groups led my experts focused on preemie issues like long term development
- Endless supply of bottles, wipes, diapers, warm clothes, etc so we don't have to even think about what we need. This will be the biggest shock when we get Miles home...
- Sleep....we don't have to do his middle of the night feedings. Getting up to pump is a nothing compared to managing a crying baby at 3 am!

And thankfully, Miles continues to thrive. He is within striking distance of 4 pounds and looks different every day. He still has a few Brady's every day but usually resolves these on his own. Other than that, he just needs to grow. We hope to introduce him to bottle feeding in the next week. Miles will be happy to have the tube in his mouth removed - it seems to be a source of annoyance to him.

Dave and I are completely smitten with him, as you would expect. His every action leaves us in awe - the way he grips our fingers to move his body (a sure sign he will be a phenomenal athlete), how alert and curious he is, especially when it is time to eat, the way he moves his head when I hold him to look me in the eye, the cute way he positions his arms, the tiny sounds he makes when he is comfy and sleeping in my arms after being fed....all of this fascinates us (and we fully understand that it would mean little to anyone else).

And thanks to everyone at the NICU who has taken such good care of him and us, giving him the opportunity to thrive. We can only hope that he continues to do so well.

Even the doctor is in love with Miles

2008-12-13T07:50:00.000-08:00

Miles is really becoming the apple of the entire NICU's eye. Our doctor exclaimed yesterday that she was "just in love with him!" Of course, she says this about all the babies but she whispered a confidential, "No," so just more evidence that we are not delusional - he is damn cute and has a great personality for a 3.8 pounder to boot!

We are still playing a game of weight and grow with a few minor Brady's a day. Yesterday, Dave saw him in the morning while I went dressed up and went to work for a change (just a visit). He gained another ounce and continues to eat, poop and do everything he is supposed to do quite well.

Later, when I came for a visit, Miles was on all star behavior - very alert and as always, looking right at me with his big blue eyes. We tried breastfeeding when I kangarooed him and again, he did great although we still don't know if he is actually getting any food this way. Later during his regular feeding, I think he wanted some more as he literally grabbled my fingers with his tiny hand and put it into his itty bitty mouth and tried to suck. Too cute.

Before leaving, I dressed Miles in one of his very first onesies (preemie sized - thank you, Auntie Jen and Uncle Mark Parisius). Although he fussed a bit when I dressed him, he certainly looked very handsome all dressed up.

Progress

2008-12-12T06:29:00.000-08:00

Miles had a couple good accomplishments today. Most important to us, the IVF (clotting on his ventriculars) has begun to resolve itself as it should. I spoke to his pediatrician about this and she is optimistic that there will not be long term effects but as much as I wanted her to, she wouldn't give a guarantee. And second, he has finally exceeded his birth weight by a whopping ounce and is a fighting 3.6 lbs. Now its grow time until he is allowed to be in an open crib!

He continues to have the occassional self resolved Brady that concern me but I am consistently reminded by the nurses that is normal and expected. As one nurse put it, if he were having 20+ a day, we might be worried, but his number maybe 3 a day. "It's normal" is a hard concept to remember in the NICU especially when the patients are so tiny and seemingly delicate. It is what we remind ourselves regardless of how scary the terms the doctors or nurses throw at us.

When I first went into the hospital at 28 weeks, the worst case scenario was that I delivered right then but I knew Miles was viable so I didn't worry that much. Even after I talked to a friend who'd had a baby at 30.5 weeks a year before, I thought he would just be fine. The time in the NICU would just help him grow up until we brought him home. Now I understand not wishing this on anyone. Yes, he is doing great. We are fortunate for that but throw in raging hormones, daily doctor reports, feeding tubes, screaming monitors, fear of the future, driving back and forth, no parking, constant pumping and it brings you to tears.

I am not a very religious person but there are times I believe that higher powers bring you events or people in your life at critical junctures. That is how I see the mother who's son, born a week after Miles and in the spot right next to him in the NICU. She has become a welcome friend to see every day while we hold our babies or pump - we share our progress and fears, complain about the nurses, wonder about juggling career with a preemie, etc. And yesterday, when it became too much, it was her that stepped in with a needed hug.

The daily grind

2008-12-11T02:31:00.000-08:00

Another fortunately uneventful day with Miles. He continues to be feisty, alert and a complete charmer. When I hold him, he focuses his little determined eyes on mine as if to say he wants out of this place!

He gained 50grams, getting him within striking distance of his birth weight. They say this usually takes 2 weeks so he is close enough. We are both anxious about his weight although the doctors and nurses tell us there is not a specific magic weight when we can take him home. He needs to be able to do three things - feed through a bottle or breast, maintain his own body temperature and not have any A's or B's (apneas or Brady's).

We will start working on the bottle feeds in the next week or so as he gets older. Based on his easy take on the breast, I am hopeful although today, he did not seem as interested (blame it on a case of hiccups). The temMiles Journey in the NICUperature control will come with weight gain and as for the A's and B's, for his age, he doesn't have that many and those too, he should grow out of.

Until then, whenever we visit or hold Miles, we have one eye on him, another on his monitor tracking his progress. Three numbers tell us how he's doing - the top right, his heart rate. Over 200, he is agitated and needs to be calmed down. Under 120 and going down, could be a sign of a Brady. Depends on the top left number, his oxygen saturation (how well he is breathing) tracked by a monitor on his foot. 100 is perfect and we like to see it in the 90s. When it falls into the low 80s, an alarm sounds but usually because he is moving or if his chin becomes tucked and or he becomes too cozy sleeping in our arms. The bottom left number is his resting heart rate and jumps from the 20s to 90s. Under 10, I worry but with all of it, the nurse cautions, look at the baby, not at the monitor. If his color is good, which it usually is, that is all that matters. If only it were that easy.

Tomorrow, is his third head ultrasound and we will get an update on his IVF. We are hopeful it will begin resolving as it should and are feeling optimistic about any issues that may result. More to come...

Miles goes for the boob

2008-12-09T21:03:00.000-08:00

Another day in the NICU with its extreme highs and cautionary lows. Dave and I both visited with Miles this morning. After a couple days of losing weight (blame it on his super-sized poops), he finally put on 20grams and is closing in on his birth weight. The doctor is pleased with his progress and has even commented on how cute he is getting. Dave thinks she says this about all the babies but I like to think that Miles is a bit more extraordinary.

Yesterday, they changed him to a metered feeding so he receives his food over 25-30 minutes rather than 5-10 and causing him to spit up. And as an added benefit, it makes for a perfect time to kangaroo hold him as he is relaxed and goes to sleep after he eats. Today, with the doctor's permission, I introduced Miles to the breast, just for recreation. He is still too young to be able to breath and nurse at the same time but this at least gets him started. And my boy literally latched right on and went to town! One of the three requirements of him going home is the ability to breast feed and/or nurse from a bottle so this was a huge win, even if its somewhat early to get too excited.

And with the high comes the low. In his comfort (after the experimentation with the breast), he had what they call a "Brady" when his heart rate and oxygen levels drop suddenly. It is made all the more serious by the alarms sirening from his monitor and red "Brady" warning on the screen. Fortunately, he snapped himself out of it (another good sign) but it was time to put him back in the incubator. Apparently, it was just too much stimulation for one day. Overall, Miles had a total of three Bradys today, all which were very mild and he pulled himself out of it but still, this is new to him, even if its common for his age. Later in the pump room with other moms, I was reminded how lucky I am with Miles. So many others have had to deal with issues far more severe than his....it helps keep it in perspective.

One of the frustrating things at CPMC is the different advice from the revolving group of nurses. Yesterday, his evening nurse said that I really should only hold Miles once a day. That by taking him out of his isolette more than that causes undue stress and could be a reason he has not gained weight faster. According to her, all the nurses feel this way. Yet when I came back this evening, the first question the nurse asked was if I wanted to kangaroo him. When I asked her if it was too much, she dismissed the notion. Somthing else to follow up with the doctor...

What mom will pass up the option to hold her little one so I did while he got his 6 pm feeding. Fortunately, he was both comfortable and breathing well the entire time. The picture today is after he was put back into his isolette....a rare Miles moment when he is completely peaceful and not moving around.

Why me?

2008-12-08T14:26:00.001-08:00

You would think there was an epidemic of women going into unexplained preterm labor at 29 weeks gestation. We fill up the pump room at CPMC sharing our stories, all eerily similar. An easy first two trimesters. Minor pain or bleeding that led us to the emergency room. We assumed it was nothing serious and worried more about our jobs than what might happen to our unborn child. We might have spent a night in the maternity ward, our contractions and baby's heart monitored by attentive nurses who kept us in uncomfortable beds padded with eggshell mattresses. We'd receive steroid shots to develop our baby's lungs, just in case. Later, we'd spend time on bedrest at home or in the hospital, fighting off the inevitable until we ended up here, telling each other the same story.

Mostly, we blame ourselves. We thought we could do it all, just like we did before we got pregnant. We wonder if we worked too hard, took on more than we needed to, exercised too much, went out too often, traveled too far and too much, and argued too much with our significant other. We could all point to another woman, just like us, who didn't go into pre term labor. But obviously, it was something, that is wrong with each of us....we know better, but seeing your baby wired up, connected to monitors and feeding tubes, makes you wonder if it was you that put him there instead of kept him safely in your belly for 40 weeks.

Yesterday, I quietly resented the woman in the isolette next to us. Her daughter was fat and on day 1, was already introduced to the breast. Her hospital gown and slipers were clear indicators it was a recent birth and her easy walk made it clear that she did not suffer a C-section. Her husband, unskilled in NICU etiquette, looked on at Miles and commented how small he was, then knocked into Miles isolette with his chair waking him up. Later, I heard the doctor saying she could take her daughter home, right when it was her time to be discharged. I nearly cried in jealousy but managed to offer congratulations. It was then she told me that this was the end of 8 weeks on bedrest, 3 of which had been in the hospital. She'd suffered preclampsia since 28 weeks and just barely made it to 36 weeks, a week shy of full term. We all have our stories and had bedrest worked, that could have easily been me in her shoes.

Miles continues to do well. He met Grandma and Grandpa Hall on Sunday and showed off by doing a downward dog (seriously, the kid pushed his legs straight and his butt in the air - very impressive). Now its just a game of weight and grow until we can take him home. We will start trying breast and bottle feeding in about a week and a half - seeing how much he hates the tube in his mouth, I think he will catch on quickly.

The highs and lows

2008-12-06T08:11:00.000-08:00

We have been very lucky so far. On most fronts, Miles is doing great - he is breathing on his own, eating 100% through his tube (no IV!), learning to maintain his body temperature and having very few and far between apneas. We have gotten used to the good news so when Miles had a second ultrasound to measure the blood on his brain - a week ago, we learned he had a common preemie issue called an Intraventricular Hemorrhage (IVH) - we naturally assumed, it would have begun resolving itself.. The doctor had told us this was common and would most likely not have long term effects. Follow up reading confirmed this so I didn't really worry that much.

So, when the doctor told us that there was still the same amount of blood, I kinda lost it. The prognosis is still the same - this shouldn't be a big issue - but I worry all the more. We hear that it might affect motor skills but they really can't be sure. When pushed, we learn that it might just be that he will learn something later, rather than not be able to do something at all. So he might be delayed in throwing a ball or crawling or saying a few words. I can live with that. But there are no promises.

I guess that is the lesson of parenting. No promises. Even if your child is born full-term with an easy labor. So we focus on all of the great things and commit to being there for our little boy where it might be a bit harder. For all of the stress and worry, we had a great day with him. I held him twice, and when we returned in the evening, let Dave have a turn. And as always, Miles likes to look around and check us out before falling asleep. Pretty damn cute if I say so myself.

31 weeks....

2008-12-05T03:48:00.000-08:00

If I were still pregnant, yesterday I would have received my weekly email from BabyCenter, telling me how big and developed my growing baby is as well as the changes in my body. It starts out as a poppyseed and makes his/her way up to a cantaloupe. This week, I learned he should be about 3.3 lbs, about the size of 4 navel oranges and 16 inches long! Fortunately, Miles was ahead of normal development and was 3.5 lbs and 16 inches 10 days ago.

If I were pregnant, I would still be alternating between calling him Amelia and Miles - (we didnt find out his sex), Dave and I would have enjoyed a last "babymoon" in Hawaii instead of a week in the hospital and I'd still be working at Vinfolio, rather than going back and forth to the hospital. Miles would have grown so much in the womb so that I couldnt see my toes or move around comfortably. He'd of turned around from his breech position at 34-35 weeks, allowing a normal birth in early February and gone straight home with us. He would never have been hooked up to wires and beeping monitors and been subjected to a changing cadre of nurses that poke and prode him while he sleeps. That is how it should have been.

But life is not what it should be. We instead, relish, our 3 lb son and are in awe over his progress. Yesterday, the nurse asked me if I was in the medical field - I laughed. Not even close. But I did impress her with my knowledge and comfort in handling him. Who knew!

Yesterday, Miles lost his IV so he is 100% being fed on breast milk. He is already at the maximum amount per feed - 30 ml, through a tube through his mouth directly to his stomach. Now it is just a game of fattening him up so he can maintain his temperature outside the isolette (fancy name for incubator). He is becoming more alert and interactive. He likes to grip onto my fingers and when I started to leave yesterday, he only tightened his grasp (see picture). He also moves his hands around, covering his ears and eyes from lights and sounds.

I am treasuring this moments...these extra 10 weeks, I would have enjoyed his kicks in my growing belly...but we are lucky, he does well, so perhaps its a gift of just more time, before he grows up and doesnt need us so much.

Baker mulls his future

2008-12-03T21:18:00.000-08:00

Save for a little bit of throw up, Miles had another good day. And considering, its his first such spit up, you might even call it an accomplishment. So we are proud. Thanks to his healthy appetite, Miles is now back over 3 lbs, having gained 1 oz yesterday. His goal is 4 lbs by December 17th when he meets Grandpa Blatt and Grandma Elaine. He lost his nose prongs today that helped with his breathing so he is down one wire. Hopefully, his IV giving him other foods will be removed in the next few days. Right now its held in place with tape and cardboard so it looks like he has a broken arm.

The doctor also upped his intake of breast milk to every 3 hour feeding ...basically he is now eating one pumping's worth of milk every 3 hours which means, I got some work to do. And thanks to my preemie education books, I am quickly learning how important breast feeding is for little Miles. Over 20 studies have shown that breast fed preemies scored higher on intellectual testing as children and adolescents compared to formula-fed kids and score an average of 8.3 points higher on IQ tests. Within the next few days, they will start adding proteins and other fats to help him gain weight even faster.

I spent a wonderful three hours with him this morning, holding him on two separate occasions and doing two of his feedings. Dave also spent some quality alone time with his this evening. He looks healthier every time we see him and it gets easier to hold him and take care of him. He is a very content and alert baby, cooing and looking around when I hold him before falling asleep. His color is much clearer now that he has recovered from the jaundice and he is losing the peach fuzz on his body. Fortunately, the blonde hair is still lustrous and abundant.

When I left this afternoon, the nurse offered the blanket he was swaddled in for Baker to begin to get used to his scent. We have been told to bring home blankets and a dirty diaper or two in the weeks before Miles arrives so Baker gets comfortable with this new being. Someone even told me that you could buy recordings of different types of baby cries to get your dog used to it beforehand. We'll see about that....so far, Baker has curled up with the blanket. Not sure how happy he is about it.

Out from under the light and more...

2008-12-02T22:09:00.001-08:00

Call it the roller coaster of emotion and today, we are enjoying the sweetness of a high and in the back of our mind, bracing ourselves for possible setbacks. Miles was finally removed from phototherapy. He no longer fusses with his funny looking hat and goggles. He has also advanced on the breathing front. He has been breathing on his own from Day 2 but had a back up system just in case. That too, has been reduced, meaning he is making fast improvements. His apneas (when he forgets to breathe - preemies of this age dont have the neurological development to "know" how to do this) - are few and far between. The doctor even said he was above normal in this area. And he continues to increase his intake of breast milk. Within a few days, all of his calories will be from my milk so I better keep up the 8-9 pumping sessions a day! Miles will also lose his IV, so one less wire to untangle when picking him up.

All in all, we are thrilled with his progress and making the most of our twice daily visits. I feel like a regular mom - taking his temperature, changing his diapers, feeding him (albeit through a tube) and rocking him to sleep. Still, we take it one day at a time....

No one said it would be easy

2008-12-01T18:41:00.000-08:00

In my perfect scenario, I would deliver at 40 weeks and without drugs. And even though, I said I was having a baby, not an experience, I thought in my heart of hearts, I wouldnt be one of those women rushed off for a C-section. My mom delivered six of us, my sister had three children....I would be no different.

But Miles had other ideas. When he was ready to see the world, he was still sitting pretty with his little butt in my pelvis - translation, breech. If he waited another 7-8 weeks, chances are he would've turned around but as we all know by now, it didn't work out that way, and the easiest way to get him out was to cut open my abdomen.

I knew the stories. Recovery is worse that you think. Take the drugs. Don't try to be too tough. Throw in pumping every three hours, even during the night and exhaustion creeps up quickly. I can only be somewhat, guiltily thankful that I am not waking up to a crying baby.

Today, it seemed to come slamming home. We had the usual morning before heading to the hospital to visit Miles. The doctor called around 10 am ....causing undo anxiety (why do they need to call unless its bad news!).....just to let us know how well he was doing. Again his feedings had been increased and were continuing to be increased now at 8 hour intervals. He was still a bit jaundiced so would be under the light a couple more days and every once in awhile, as expected, he had an apnea (forgets to breath - his neurological skills are not fully developed). Net net...he is doing great.

Our visit was wonderful....I held him for 30 minutes and as usual, he opened his tiny eyes and gripped onto my pinkie with his entire hand. We have also become experts at taking his temperature and changing his diapers. And in case anyone would question it, boys like to grab themselves from the very get go. The second his diaper his off, Miles' hand goes right to his little penis and it become a battle to move it when I cover it up.

It was fitting that while I was pumping yet even more milk, Dave ran into my doctor. While he raved that I was up and about, she warned him that I better take it easy. I just had major surgery. By the time, we left the hospital 30 minutes later, Dave commented on the bags under my eyes and had to get the car for me as I was too exhausted to walk even a block. He even ran the errands for me while I sat in the car, including my request to buy nipple cream.

Point taken, I am taking it even easier. Dave is being a champ, cooking, cleaning, doing laundry, serving my every need and all with love and concern. And with my hormones raging, it brings me to tears to think how lucky I am. For him and Miles. And yes, Baker too, who I am sad to say, does not have much of chance next to Miles.

Day 6 - Miles is officially a Giants fan and other milestones

2008-11-30T19:56:00.000-08:00

Miles had his second visitor today - Barry who blessed the child with his first Giants jersey. I had hoped for a Reds fan but I have to remember, he is a California boy. The blond hair already screams out, future surfer so on this too, I give up.

Today was the first day, I was a visitor to the hospital. When we walked in there at 11 am, I saw another new mom slowly walking out of the NICU in a pair of furry slippers and recognized myself just 2 days ago. We smiled at each other, an unspoken understanding. Miles continues to improve. His eating has increased to every 3 hours and 4 ml of breast milk. Finally, all of the pumping, is paying off!

He had a nicer nurse who was only too happy to have me hold him for a good 45 minutes. This time, his eyes were wide open checking me and Dave out and clearly enjoying the cuddling. When we came back later in the day, I held him again and again, he opened his eyes taking us in. By that time, his eating had improved enough that he was again increased to 5 ml per feeding. Dave and I were also more confident to take on his temperature and diaper changing. I hate to admit it but it was my first....I always said I was waiting for my own child and thankfully, a three pound baby doesnt poop that much.

Today, I also got my first experience in the "pump" room and was able to meet other moms. The first thing I learned is that there quite a bit of accessories for easy pumping. I'd already bought the handsfree bra that holds the bottles while you pump so you are free to read, do a crossword or work on the computer. Other women had the aprons that come in beautiful patterns that go over the bottles for ultimate privacy. Or you can just use the worn hospital gowns, over a regular nursing bra and hold the bottles in place. That would be me :)

Beyond the accessories, connecting to other mothers filled a huge hole. Everyone had a different story...how many babies, how many weeks, what caused labor, how much time we had before, how we were coping, but really everyone was so positive and open in sharing their babies situation, progress and state of mind. While I am still nervous about setbacks, I hold onto that 90%+ chance that everything will be just fine for Miles.

Day 5 - Rachel goes home

2008-11-29T19:34:00.001-08:00

What should be a miraculous time in our lives is instead a rollercoaster of emotion. To those that have called, thank you. I appreciate all of the messages and flowers but sometimes it is too much to go through all of the updates each time. It scares me enough to talk to the doctors and to see Miles tied up to so many tubes, even though we are reassured, he is doing just fine.
Yesterday, like every other, had its highs and lows. The highs. Miles achieved a feeding. Through a tube but still, he processed it, all the way through to a poop. I also was able to hold him for the first time in what is called a "kangaroo" hold or skin to skin. After getting over the fear, I would break him, I was able to enjoy him and finally run my fingers through his blonde locks. And best of all, he was content, more so than under the lights of his incubator. I wonder if he regrets fighting to get out so much now! Takes after his mom!
The lows...the doctor came by when unfortunately Dave wasn't there and in between the successes told me that the head ultrasound showed blood on his little brain. Not uncommon but not good. Most likely it is a broken blood vessel from the trauma of being born and it will decrease. Just more to worry about. Sometimes I think the less I know, the better.

Today, four days after the C-section, I am finally able to go home with mixed feelings. As it is, I can walk (very slowly) the short distance from the post partum rooms to the NICU so early morning and late night visits to deliver breast milk are routine. Once I am home, it will be a drive and until I am recovered, I am dependent on Dave to come and go. Again, they let me hold him but only for 10-15 minutes and it made my day, although just watching him coo and kick his legs makes my heart melt.

Miles continues to hold steady though his weight has dropped to just under 3 lbs....all normal and his bilirubin levels (translation jaundice) still require him to be under the bright light. He is eating. The nurse showed us how to take his temperature and when we are ready to change his poopy diapers. Both Dave and I were disconcerted watching her manhandle him, almost too roughly, though she promised us he is not so very fragile. Still....

We are home now and getting used to the new commute. The baby room is being painted and Baker wanders around, clearly knowing his position in the family has changed.

Day 3 - Still in the hospital

2008-11-28T21:39:00.000-08:00

Happy Thanksgiving. I am still at CPMC and getting used to my schedule here. I am now able to sometimes walk to the NICU to deliver my growing breast milk. Unable to hold or soothe him, this feels like the one thing I can do to nurture Miles.

I felt disconnected from any celebration after 7 days in the hospital. The outside world, including the attacks in Mumbai, feel completely removed from our new reality. My days are spent attempting pumping, waiting for Dave's visits, talking to family, receiving visits from the slew of lactation consultants, social workers, birth certificates and changing guard of nurses popping in to deliver drugs, check my incision and take my temperature and blood pressure and walking/taking the wheel chair the short distance to the NICU. My hormones are in full swing, reducing me to tears at a moments notice, usually after seeing Miles and feeling helpless in making him better.

Still, we are thankful for what we do have and that our son is as strong as he is for 30 weeks gestation. We celebrated with a steak dinner , courtesy of CPMC and for me, a half glass of wine (one small guilt-free benefit of no longer being pregnant).

Getting used to the NICU

2008-11-28T21:30:00.001-08:00

By Wednesday, I passed the tests to remove the IV and catheter and finally, earned a trip in a wheel chair to see my little Miles. He'd gained quite a reputation already because of his head of blonde hair and his loud cries. Dave likes to think he has dark roots but I dont see it. His blue eyes were covered because he was in an incubator. But Miles had already passed a major hurdle. He was off the respirator and breathing on his own. Quite a feat for a baby of his gestational age.
His body is still covered in light blond hair which most babies lose by birth, giving him a fur like quality. Although he doesnt look as small as I expected from a preemie, his skin is loose, just waiting to be fattened up.
Lying under the bright light. he kicked his perfect feet constantly like he was still in my womb. I learned how to "contain" him but holding his head and feet tightly and was even allowed to give him a binky. We arent allowed to hold him yet, maybe in a few days.

The first day

2008-11-28T21:24:00.000-08:00

No one really prepares you for having a baby in the NICU. And for two first time parents, we don't have any other reference point. While I was wheeled to a recovery room after a C-section, Dave followed doctors to the NICU. In between nurse visits to check my condition, Miles' doctors updated us on his condition. His breathing was labored. Not abnormal but a tube was needed. He lost blood, nearly 10% of his total supply. He needed a transfusion. And for each, we signed away our rights. And each time, I tried to sit up, hoping to be wheeled over to see my son, I nearly threw up (common side effect of the morphine). Dave took turns sitting by my side and then his and in between, a quick trip home to feed our first child, Baker.

How we got here - A recap

2008-11-28T20:53:00.000-08:00

This blog will follow Miles' progress in the NICU at CPMC in San Francisco and is intended for our friends and family. We have been overwhelmed with the love and support from all of you since his birth on November 25. For those of you, we haven't been in touch with recently, here is a quick recap of how Miles came to be born at 29 weeks, 6 days gestation - over 10 weeks before his due date on February 4, 2009, after a nearly uneventful and easy two first trimesters.

It started on November 16 when I went into the hospital with some bleeding. Blame it on the hospital making you sick but I was diagnosed with contractions and low amniotic fluid and earned myself a night in the maternity ward. They released me the next day after shots of steroids to help develop the baby's lungs (just in case) and with a prescription for Nefadepine to stop contractions and instructions to stay on bedrest for a minimum of a week.

And for five days, Miles behaved. On Friday night, November 21, the contractions returned and this time were far from minor. I understood the need for drugs during labor though I wasnt ready for my own. Back to CPMC,this time it was much more serious. I had started dialating so was immediatley hooked up to an IV, wheeled on a gurney to the maternity ward and put on magnesium, a much stronger drug to stop contractions. And with side effects. I spent the night surrounding by ice and woke up the next morning, still contracting. The specialist put me on Indocine (sp) - the only drug specifically designed to stop contractions but has the unfortunate side effect of decreasing amniotic fluid. But it worked and I promised to stop working and lay on my side for as many weeks as it took to deliver a full term baby.

On Sunday, I was moved to the Antepartum floor for ongoing monitoring until I was allowed to go home. All seemed under control as long as I was on the Indocine. Dave and I fell into a routine and planned for the weeks ahead, promising to take it a day at a time. Then the ultrasound showed the all too expected result of the Indocin....very low amniotic fluid. I was switched back to Nefadepine and given an extended hospital stay until my fluids went back up. That was Monday night.

Hours later, I awoke in contractions worse than any I'd experienced before. I called the nurse. Then Dave, three times until he answered. Something was wrong and I needed him. And for once, my dear procrastinating husband, got his ass in gear in minutes without the luxury of his morning coffee.

Fortunately my doctor was on call and was there within 20 minutes. After a quick check, she verbalized what we both knew. My water broke and this baby was coming now. There was no point, in trying to hold him/her back anymore. Within minutes, I was rushed up to the OR, given a spinal, Dave was at my side and my stomach opened. Fifteen minutes later, I heard a faint cry and Dave cry out, "its a boy." I'd called Dave just an hour and 17 minutes before.

The NICU doctors took over, letting me kiss my son quickly before rushing him out of the room. Dave followed, leaving me to lie back and begin to come to grips with our new reality.