Two steps forward, one step back

Two steps forward, one step back - that's what the nurses and doctors told us our experience in the NICU would be like. So far that's been fairly accurate, especially in the last week. Tessa has been on and off the oxygen twice (she's not currently on it). She's also had the feeding tube taken out and put back in three times (it's not currently in). The good news is that it does seem like she's making forward progress. Every time that she has a setback, it lasts for a shorter time than the time before. For example, the last time that she was oxygen, she was only on for a couple of hours. Megan and I are optimistic that Tessa is on the path toward coming home, but that doesn't make it any easier to go into the hospital and see our baby connected to a machine that wasn't there the last time.

Did we mention that preemies make a lot of noises?

Please, Dad, no more pictures!

Feeding tube update

Tessa's feeding tube is out! She's taken all of her feedings by mouth for 24-hours, so they took the tube out this morning.

Feeding tube

Tessa is continuing to grow and make progress with her feedings. The nurses think that they may be able to remove the feeding tube in the next few days. It's possible that the feeding tube is causing some reflux because it prevents the muscles in her esophagus from relaxing completely, which in turn may be causing some of her apnea episodes. Our hope is that once the feeding tube comes out, she'll have fewer spells (and eventually none). Once that happens, she's homeward bound.

Becks visit Tessa

Tessa got a visit from her grandparents and her Aunt Sarah today. There was lots of holding and Tessa was very happy with all the love.



The other good news is that Tessa is up to 5 pounds, 6 ounces and she is having less frequent apnea spells.

Tessa sleeping in her crib

Tessa with mom

We've decided this is her favorite place in the world.

We just finished a visit to Tessa and were happy to see that she's already off the oxygen. Still having low levels on occasion but doing well.

Back on some oxygen

Since we took Tessa off the caffeine, the doctors haven't noticed an increase in apnea spells, but she is still having some dips in her oxygen saturation levels. This is probably due to the fact that when her belly is full, she doesn't have enough room in her abdomen for a full breath and also that she still has some premature lung syndrome that she needs to outgrow. For those reasons, they decided to hook her up to a low level of oxygen using a machine similar to the one that adults use when they need some oxygen supplement. This is not a ventilator or CPAP, because it doesn't force any air into her. It just gives her a higher level of oxygen in the air that she's breathing.

The first bottle

Ok, well this isn't actually her first bottle. The nurses had that honor. But, this is the first time it's been documented. When we got to the NICU last night, our nurse said that if Tessa was awake when we were finished with the temperature and diaper change that we might try feeding her with the bottle. Of course, with both mom and dad pulling and tugging on her while we were changing her and the fact that we had to weigh her (still not quite five pounds), she was wide awake by the time we finished. Tessa was putting her hands in her mouth and sucking on her fingers so the nurse gave us the ok to try bottle feeding.

The bottle that we used had a preemie nipple on it, which is supposed regulate her feeding speed, but she is still able to eat much faster with the bottle than with the gavage tube, so you have to keep a close eye on her and make sure she's not choking. I was really nervous about doing it, but Tessa was a real pro. She took the bottle like a pro and ate all but about 13 mL of it. According to the nurse she's bottling like a preemie and she still has some maturing to do (she sucks really fast and then has to pause to breathe instead of being able to suck and breathe more regularly). Once we can get her eating all of her food without the gavage tube, we'll be one step closer to bringing her home.

When you eat too much, you get the hiccups

Tessa got a little too much to eat today and whenever that happens, she gets the hiccups. Preemie hiccups are just like adult hiccups, just a lot smaller. There's really no way to explain, so you'll just have to watch the video.

Progress report

Tessa is weighing in at over 4 lbs 14 ozs, within spitting (up) distance of the 5 lb mark. She has also started waking up before her feedings and crying if she gets too hungry. Those are good signs because it means that she'll wake us up during the night when she wants to eat, which is one milestone she needs to pass before they'll feel comfortable discharging her. The nurses are also slowly starting to wean her off the feeding tube by letting her take some milk by bottle. How much she can take by bottle is dictated by Tessa -- preemies tend to tire out quickly and it will be some time before she can finish an entire feeding without help from the tube.

Tessa quits the caffeine

Today when I was visiting Tessa the doctor told me that they had decided to take her off of the caffeine. As we mentioned in an earlier post, most preemies are on caffeine in order to reduce the apnea spells. The doctor had an interesting theory today, though. She had looked back through Tessa's file and noticed that a lot of the spells happened just when feeding started or near the end of it. This could be due to Tessa refluxing her food. Preemies don't have very good control over their stomachs (let's be honest - no babies do) and we're only feeding her liquid, so it's pretty likely that she's refluxing when she eats. The reflux can get caught in her throat and cause her to stop breathing while she focuses on getting it back down. Since caffeine can actually irritate her stomach (think too many cups of coffee), the doctor decided to take her off of it to see if we can reduce the frequency of spells.

I was really impressed with this analysis and I am totally on board with it. I had already noticed that Tessa would set off all the O2 alarms for the first 20 minutes when I was holding her, but I thought it was me, not the feeding (even though I only hold her when she's feeding). It'll take a couple of days for the caffeine to get out of her system, but we're excited for the possibilities...

Tubby Time

We had a very exciting visit yesterday: Tessa's first tubby time! Tubby time is what they call it when you give your baby a real bath. We've already done a sponge bath for her, but now that her cord is totally healed, they said we could do a real bath. Tessa did not enjoy her sponge bath (I didn't show any pictures of it because she cried most of the bath), so we were a little anxious about immersing her in water. However, she really seemed to like the real bath. Once she was in the water, she opened her eyes and looked like t0tally relaxed.

Here is a picture of her staring at her nurse, Beth.

Here's another picture of her staring at Mommy while she gets scrubbed clean.

And, finally, here is a picture of her sleeping very soundly after the bath.

Apparently, I now have the reputation of being a dad who just takes lots of pictures. The night nurse last night said that she heard that Mom learned how to give a bath and dad took the photos. I justified my role by saying that I was providing permanent visual instructions on how to give the bath.

A sleeping baby

We arrived a bit early today for Tessa's feeding. The nurses like to keep the preemies on the set schedules (for Tessa it's every 3 hours) so we just sat and stared at her for 20 minutes while she was sleeping. These are a couple of my favorites.

Rocking it

Now that Tessa is out of the isolette, we can pick her up and hold her in a rocking chair without help from the nurses. She had a bit of a rough day yesterday; apparently, she's had some gas that's making her stomach big and uncomfortable. They took an x-ray, which was negative, so they're just keeping an eye on her for now. She's also getting a small amount of oxygen because her oxygen saturation levels were on the low side. This might be related to her having some reflux after her feedings. It's hard for preemies to multi-task: eating and breathing at the same time can be tough. On the positive side, Tessa has been gaining lots of weight (relatively speaking). She's up to 4 lbs 8 ozs!

Big girl crib

Tessa had an exciting day yesterday -- she moved out of the isolette and into a "big girl" crib. Because Tessa is now able to regulate her body temperature, she doesn't need the temperature control provided by the isolette. Tessa also had her first visitor, her uncle Scott. I was very happy to introduce Tessa to Scott, since he was also born around 32 weeks. Tessa was able to see that you could go from being a tiny preemie to being over six feet tall!

Megan and Tessa

We know that the pictures are starting to look a little similar, but we can't help ourselves. Here is a shot of Megan kangarooing with Tessa tonight. Tessa was awake when we got there (we had baby CPR class and missed the diaper change and temperature measurement) and so we went straight to kangarooing and feeding (by gavage tube). Tessa stayed awake for a while and stared at us until we gave her her binky. At that point, she really gnawed on the binky and put herself right to sleep.

Check out the super cute hat that Tessa was wearing tonight!

Feeders and growers

We haven't been able to post much in the last couple of days because we've both been really busy getting ready for Tessa's eventual arrival at home, working, and organizing Clean Energy Prize (CEP). Speaking of CEP, the Grand Finals are today and Robbie was quoted in the Globe yesterday: http://www.boston.com/news/science/articles/2010/05/10/unlikely_collaborators_take_on_venture/.

Tessa is doing really well. She's now a "feeder and grower," which means that her main job is to eat and gain weight. As of last night, she weighed 4 lbs 3.5 ozs. She's still having some apnea spells, but those should go away as she gets older and bigger.

Tessa and her apnea

After Tessa fell asleep today she did have one apnea episode, so she's still got some progress to make on that front. I think she's only doing that a couple of times per day, which is much better than it was last week. The NICU is giving her caffeine in order to try to reduce the frequency of apnea spells - standard practice for preemies, but no consensus from the nursing staff regarding whether this will ruin her appreciation for a good black cup of coffee as an adult. She's currently getting the body weight equivalent of a couple of cups of coffee per day, but they are going to take her off of it when she is 34 weeks old (on Thursday). She may have a few more apnea spells after she comes off of it but hopefully they will go away for good soon.

Tessa and Daddy - on Mother's Day

We went to visit Tessa this morning and Megan let me kangaroo Tessa, which was really nice considering that it's Mother's Day. Tessa is still doing great - no ventilator to help her breathe, not on an IV anymore (which she's very happy about because now both hands are free), and generally starting to act more like a normal baby (i.e. making funny noises, eating often, and processing her food often). This morning she opened her eyes and really hung out with us for about 10 minutes before she fell asleep. Megan got some great shots of her and me.


Kangarooing with Tessa is one of the most relaxing things I can do, and it almost always puts me to sleep. On Thursday, I woke up with Tessa on my chest and a couple of nurses standing over me and laughing. Fortunately, this time, it was just Megan and the camera that I woke up to.

Resting after a long day

Tessa is sound asleep kangarooing last night after she moved to her new home in NICU A (intermediate care).

Tessa's new digs

This is Tessa's new isolette in NICU A. It looks similar to the intensive care isolette, but it's actually quite different. For example, the top section of the isolette can't be raised at the touch of a button -- Tessa comes in and out of the sides now. There's also no heater in the top section and, hard as it is to believe, there are far fewer wires, tubes, and cables running in and out of this isolette. There are also fewer monitors in this room, so there are not as many alarm bells ringing at all times. After this isolette, the next step is an open "crib."

First graduation

Tessa graduated to intermediate care this evening. That means that she's breathing successfully on her own, she's eating "full feeds" for her weight, and she has no more IVs. Once she meets several additional milestones (maintaining her own body temperature, no more apnea, and eating without the feeding tube), she'll be able to come home.

Getting dressed

After the bath, I was given the job of picking out an outfit for Tessa (because outfit selection is my real strength). I chose a pink one with ladybugs on it. Here are a couple of my favorite pictures of Megan putting Tessa in the ladybug suit.

In this one, Tessa is even learning how to smile for the camera.

Baby bath time

We learned how to give Tessa a sponge bath tonight. She wasn't exactly thrilled with us when we started because we had to take the little monitors that are taped to her off. She really started wailing when we wiped her face off and then sponged off around her neck and arms, but by the time we got around to shampooing her hair, she was really getting into it. I don't have any actual pictures of the bath because it required several sets of hands. I'll get more next time.

After the shampoo, our nurse taught us how to make a faux hawk for our baby. Tessa is all swaddled up and looks awesome with this hairdo.

Breathing naturally

Tessa has now been off of CPAP on her own for over 24 hours and seems to be doing really well. We are totally thrilled. Megan kangarooed her this morning for two hours and it went really well. The only downside is that sometimes she gets so comfy when you're kangarooing her that she forgets to breathe (apnea) and her O2 levels drop and her heart really slows down. This is common for preemies because apparently their bodies don't know that they have to keep breathing and when they are snuggled up to you they just forget to do it. Fortunately, a little tickle on her feet or a rub of her back reminds her to keep breathing.

Nothing better than a binky

After changing getting her diaper changed and her temperature measured this morning, Tessa was wide awake. A lot of times when we visit she sleeps the whole time, but this morning was amazing, because she stayed awake for almost ten minutes while we were waiting for the nurse to come set us up for some kangarooing. It was pretty awesome to hang out with her for that long when she was awake, even though she mainly just stared at me. We did get a little interactive when I put her binky in her mouth and she played with it while she stared at me.

Tessa's iPod

Robbie and I recorded ourselves reading stories and nursery rhymes (thank goodness we already had the baby shower and we now own baby books), and we loaded them onto an iPod for Tessa. We bought her a small speaker and she listens to us read stories a few times a day. You can't hear our voices outside the isolette -- it's just loud enough for her to listen. The nurses think she's spoiled, but they're also interested in the strategy in part because a Harvard professor is starting a noise study in the NICU.

Crying baby

This is a picture from Tessa's photo shoot last night, when they were changing her CPAP. She was very unhappy about being bothered, but she calmed right down after they were finished and fell back to sleep. I didn't have my photographer with me today, so I don't have a picture from this morning, but Tessa was very peaceful. I also dressed her for the first time today in a little preemie onesie with butterflies. She promptly spit up all over it, but she looked very cute for a few minutes!

Eating made easy

Tessa is getting lots to eat now (relatively speaking). This is her lunch, which is attached on one end to her feeding tube and on the other end to a syringe pump that slowly pushes the milk down the tube. Once it hits her belly, she is a very happy little baby.

A look in the mirror

Tessa slept soundly on my chest for an hour this afternoon. You can use a mirror to see the baby's face while you're holding her.

Fish Tank CPAP

Robbie is busy preparing for the Clean Energy Prize finals tomorrow http://www.mitcep.org/, so it falls to me to satisfy Tessa's many fans with some new posts. Yesterday, Tessa got a break from the CPAP, but last night they decided to put her back on because her breathing was a little labored. It's not uncommon for preemies to go on and off CPAP before coming off for good. She's much more comfortable on the CPAP for now, and they will probably try taking her off again tomorrow. However, they changed the CPAP mechanism to something that looks and sounds a bit like a fish tank -- constant bubbles in this tank of water. We tried to find out the difference between this "old school" method and the mechanical air flow CPAP she was on before. It turns out that the end result for her is nearly identical, but the fish tank is less expensive. I'm sure our insurance company is pleased; they must have had quite a shock this week.