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The Beantown Bloggery: Free Kickass Cupcakes - 6/18

The Beantown Bloggery: Free Kickass Cupcakes - 6/18

Starting from Scratch - Weeks 8 through 10

As of Feb 26th, Zachary got a fresh start -- developmentally speaking. Feb 26th was his due date, and the date from which all of his developmental milestones will be calculated. Since his homecoming on Feb 10th, we've had our hands full of the usual newborn stuff -- sleep, eat, poop. This is broken up by one or two stretches of alertness during which we try to interact with him...but then we remember, he is only a few days old developmentally speaking! We are blessed that Zachary is home with no major medical issues aside from acid reflux / heartburn. Acid reflux is described more as a laundry problem. The heartburn is unfortunately more of an issue as it really affects him and keeps him up. We tried a number of non-invasive tricks to minimize his reflux and thus his heartburn, but these have not been effective. So we started him on Zantac this past Wednesday and as of this writing we are waiting for it to kick in. Here are a few slideshows from the past two and a half weeks. As of Wed, March 3, he was 7 lbs 13 oz!!

Feb 17 - Feb 21


Feb 21 - Feb 28


March 1 - March 6

Zachary - Week Seven (and part of Eight) Mon - Feb 8th - Tues Feb 16th

HE IS HOME!!!!!!!!

The slide show contains pictures from the day he came home. Go directly here to also see the videos from the day:

http://picasaweb.google.com/sirizarry/20100210?authkey=Gv1sRgCN7lgZi1mtf8XA&feat=directlink

On Monday morning, Feb 8th, I called the NICU to get an update on Zachary before my weekly work meeting. I specifically wanted to get his weight from the night before so I could update the blog. The nurse picked up the line and said, He had a great night, we've switched to anytime feedings. we'll do that for 48 hours and you can take him home on Wednesday! Holy homecoming, Cupcake!! After being in the hospital since his birth on Dec 27, 2009 (and since Christmas Eve in utero), Zachary finally came home on Feb 10th!

I've been asked a number of time by people to tell them about how our days went the past 6 and a half weeks. Busy and stressful starts to describe it, but hopeful and happy finishes it off. We got up as usual and started our day off as usual with me dropping Todd off at the train, this time the commuter rail and not the Red Line. I returned home to try to get some work done in between pumping, doing preemie baby development research, checking in with friends and family -- by the time 2:30 pm rolled around, I always felt like I had done a terrible job at any of the tasks I'd tried to accomplish. But, even with the stress of that, I couldn't help feel elation as I packed up my freshly expressed milk, laptop, purse, and fresh clothes for Zachary and made my way into Boston. My goal was to make it in time for his 4pm care time and to possibly nurse at that time. If he was sound asleep, we would scrap plans for nursing and just do the NG tube. Either way, because he has reflux, it was best to not jostle him during or after a feeding, so we'd have to hold him the entire feeding (1 hr 15 min) if we wanted to hold him at all. In between feedings (which started at 4hr intervals), we were supposed to let him sleep as soundly as possible. At around 6pm, I'd put him back in crib and pump for 20 min. By this time it was close to 7pm. I'd whip out the laptop and try to get a little something more done before Todd arrived, but this time I was sitting in an even more distracting place. Todd would arrive at the NICU sometime between 7 and 8pm. At 8pm, we'd start all over again with care time, holding him until 9:3o pm or so with me getting in another pumping session. It would be 10pm by the time we got home, some nights we'd just stop for fast food, other nights we'd start cooking or heating up dinner. We'd both try to do a tiny bit more work or get something done in the house. Undoubtedly, I'd pass out on the couch only to struggle with myself to get up and pump before I could really go to sleep. Some nights, Todd would head to bed and I'd stay up for a final pumping around midnight. Even with the discomfort of the suction, I'd fall asleep pumping only to wake up and hour or so later with the suction cups attached and the pump still going. One evening this happened, I found a large amount of expressed milk in one of the collection bottles when I woke up. i thought to myself, great, at least I have something to show for falling asleep sitting upright with a damn mechanical pump attached to my breasts for the last 2 hours. Bleary eyed, I fumbled the collection bottle and spilled all of the hard-earned milk. Did I cry over spilled milk? You bet I did. But through it all, I kept reminding myself: Zachary is fine, he's fine, we are so thankful he's fine. I know there were other families struggling with worse health issues than Zachary...Zachary battled the sepsis like a champ, his cardiac murmur is likely innocent, and his acid reflux can be managed, but I am sure those families will tell you the same, it's your personal journey that matters. I have been lucky enough to receive counsel from one of my dearest friends, Tiffany, whose daughter has leukemia....you wouldn't believe the can of whoop ass that family has opened up on leukemia. One of the ways Tiffany has found her way through the last few years is to look for the silver lining. She encouraged me to do the same. And here's the silver lining: it's you. You out there reading this, looking at the pictures, sending us good vibes. It's the community that has rallied around us and little Zachary. It's the encouragement we have received from you all as we've stumbled over boxes in our new house over the last 6 weeks of just trying to make it day-to-day. We thank you.

Now home, I am sure we will many of the same issues all new parents have and maybe a few more or less from the usual. His first full week home went really well. He's had his first guests, his paternal grandparents and uncle. Also, as a preemie, he has a nurse that makes home visits to check on him. We're doing the typical routine, he sleeps, he wakes, we change him, we feed him, we hold him (at least 20 min to ward off reflux), we put him down (on his very sloping mattress, again to ward off reflux), rinse and repeat. When he's a bit more alert, we throw in a tummy time or a side lying time. As a preemie who was under the bilirubin lights for two weeks, Zachary is advanced at head control compared to full term infants born at his current gestational age. One of the nurses at the pediatricians said "wait til he can pick his head up and move from side to side". Zachary proceeded to show off and do exactly that. Zachary will typically go 2 to 3 hours between feedings. Some nights, Zachary sleeps longer and Todd and I will wait as long as possible before we are forced to wake him up for his feedings (preemies are highly discouraged from going more than 4 hours, with 5 hours being the absolute longest interval suggested). As of Friday, Feb 12th, he weighed in at 6 lb 2 oz!

Zachary -- Week Six

Mon Feb 1^st – Sun Feb 7th

Zachary had an amazing week!! HUGE NEWS: On Feb 3^rd, he took a full bottle feeding!! A full 65 ml with no spells!! Why is this such amazing news? Zachary can’t go home with the nasogastric tube (NG tube) to supplement his feedings. As a little guy, he often doesn’t have the energy to finish the bottle or just refuses to take more at a single sitting. When he doesn’t take a full bottle, they put the rest down his tube. We need to work up to full feedings, by bottle or nursing, each and every time in order for them to take out the NG tube. Since Feb 3rd, he has taken a few more full bottles and many almost-full bottle feedings – he is making amazing and rapid progress. He is also displaying hunger, something he hasn’t shown in the past 6 weeks. This suggests that his digestive system is maturing and he is digesting his feedings more efficiently and rapidly.

The other big news is that he has put on 8 ounces this week! As of Sunday night, he was 5 lb 12 oz. This is slightly faster weight gain than expected (only very slightly), which suggests that he is doing a way, WAY better job nursing than we thought. Usually, he nurses for half an hour and we subtract 15 to 20 ml from his 65 ml feeding. We’d been choosing this amount because he only *really* nursed for about 10 – 15 min and kind of slept / nursed for the remaining 15 min with it being mostly sleeping. Nursing really wipes him out! All in all, an amazing week for our little one – he should be home this week!

Zachary -- Week Five!

Tues Jan 26th – Sun Jan 31st

Zachary continues to progress with his feedings and his nurse Laurie says he has “turned a corner”!! His weight is now increasing steadily and he is growing! He is now 5 lbs 4.4 oz and 19.5 inches long, it has been such a thrill to see him progress from his low of 3 lbs 15 oz on January 6th until now. This week was relatively worry-free. The one minor hiccup were a few days of positive guaiac tests, which tests for occult blood in his stool. With a positive test, it was thought that he might have a fissure or possibly a cow’s milk allergy. By Monday, he was testing negative. Had I cut out enough cow’s milk (ie: Ben and Jerry’s)? Was it a small fissure that healed? At this point, they are not concerned.

Zachary is much more awake and alert now between feedings. We can hold him more and sing / talk / read to him!

For more pics and videos, see links at the end












More pics and videos:

http://www.youtube.com/watch?v=iYyc6xk1jf0

http://picasaweb.google.com/sirizarry/20100129?authkey=Gv1sRgCPethu3VrrXPxwE&feat=directlink

http://picasaweb.google.com/sirizarry/20100130?authkey=Gv1sRgCLvL_c-Jq7jeZQ&feat=directlink

http://picasaweb.google.com/sirizarry/20100131?authkey=Gv1sRgCLW8_q3g8IKgaA&feat=directlink

http://picasaweb.google.com/sirizarry/20100201?authkey=Gv1sRgCICNubmzo9jpVw&feat=directlink

Zachary -- Week Four

Tues Jan 19th – Sun Jan 24th

The big news this week is that Zachary was moved to a CRIB!!! Yay!! Finally, we can change his diapers without having to reach through the incubator holes!! AND, if it’s close to his feeding time and he’s already awake, we can pick him up! His first two days outside of the incubator were a little rocky – he had a bit of trouble keeping his temperature up and he had a spell each day. However, none of this was too worrisome to his nurses. The other news is that he is doing amazingly well with his by mouth feedings!! On Sunday morning, he took 45 ml of his 53 ml feeding by bottle and on Monday morning, he took 30 ml by bottle. We have also been nursing when I visit, but we have yet to do a serious analysis with a scale to see how much he is actually consuming. For now, we are still just trying to get him comfortable with nursing – our ‘no expectation’ goal (and ‘our’ is both us and his medical team) is to bottle half the time and nurse the other half by the time he comes home…but we would all be pleased with whatever combination of by mouth feedings he is able to accomplish.

Todd’s parents and brother came for a visit this weekend. Not only were they able to paint Zachary’s room, but they got a chance to visit with Zachary and watch his weekly bath. And witness him reaching 4 lbs 11.6 ounces!!

Zachary - Week Three

Tues Jan 12th – Mon Jan 18th

This has been a week of milestones for little Zachary! In order to come home, he has to be able to breathe on his own, maintain his temperature, and take all of his feedings by mouth without any disruptions to his breathing (aka suck, swallow, and breathe). Zachary has been breathing on his own since recovering from the infection, CHECK! This past week, the nurses steadily lowered the temperature of his incubator as he improved his temperature regulation. They think he should be ready for a crib in just a few more days!! So (almost) CHECK! Zachary has also started nursing! Well, really, he is practicing nursing. When he hit what would have been 34 weeks gestational age, we offered him the opportunity to nurse. He actually took to it very, very well! He rooted around and latched on immediately and started nursing. He didn’t seem to be drawing out much, but he never stopped breathing during the whole sucking phase! It was exhilarating to watch him hit a major milestone! The next night, we tried again but this time he fell asleep immediately. The next night also. On Monday, he stayed awake long enough to nurse for about 20 minutes. Is he getting any milk? It seems like yes, he is getting a little something. He is still too small to effectively nurse, but continuing to offer nursing while he is being gavage-fed is good practice for us. He’ll be bottle fed when I am not at the hospital, so it is important to get in nursing sessions even if he is not drawing out a lot of milk if I’d like to try to nursing at home for the majority of the time. The fact that he can already suck, swallow, and breathe is great! Now, he just has to get strong enough to do it for long enough to get a full feeding multiple times a day. He hasn’t spit up in the last three days, so we are excited that his tummy is beginning to tolerate the larger (48 ml / 4 hrs), higher calorie (supplemented with 4 cal / oz.) feeds.

On January 16^th, Zachary surpassed his birth weight! HOORAY! As of Monday night, he is at 1955 g, or 4 lb 5 oz., and he grew another half inch (currently measuring 18.5 inches). He is in the 25^th percentile for weight, and 75^th percentile for length.

Since he’s been doing a good job keeping his temperature up, we also hit two more milestones. Zachary can now come out of the incubator TWICE a day to be held! Also, we were able to bathe him on Sunday afternoon! His primary nurse Laurie had gotten a tub all set up before we arrived, and by tub I mean small dishpan! This is filled with bathwater and towels are put inside so he doesn’t slide. So that we both got a chance to participate, Todd held him while I scrubbed. He wasn’t thrilled by the bath, but tolerated it very well, never really crying very hard. When he was rinsed off, we wrapped him up like a mummy, got a new basin, and gave him a shampoo. He absolutely LOVED getting a shampoo!! And all I could think of as I wrapped a washcloth around his head was "Zachary's Spa Day"!

The final milestone for this week is that the caffeine supplementation was discontinued and he hasn’t had any apnea / bradycardia spells!