Monday, April 25, 2011

Happy Easter

We had a very low key Easter at our house. We had cuddle time, mom went grocery shopping, and dad mowed the lawn. We snapped a few pictures of our exciting day:

Sunday, April 24, 2011


Eliza had surgery to install her gastrostomy tube (G tube) early Tuesday morning. The surgeon went in through the same incision where her ileostomy was, in an effort to spare her yet another new scar, an effort we appreciate for her sake. By his account the surgery went very smoothly, and we were able to join her in the recovery room after only a couple of hours.

Eliza in her hospital gown prior to surgery - it was just a bit too big for her...

I think our first reaction on seeing the G tube was surprise at how BIG it is. All of the pictures and videos we'd seen (when trying to decide whether to get one) had shown older babies and children, so proportionate to Eliza it seems quite a bit bigger. I don't have any good pictures of it, so I'll try to describe it instead: The tube comes out of her stomach a little above and to the left of her belly button. It's about a quarter inch in diameter and nine inches long (compared to a 21-inch-long baby, that's big!). At the end of the tube there are three different ports - a big one (for milk), a small one (for syringes of medicine), and a special port for adding or removing water from the "balloon" on the other end of the tube (insider her stomach) that holds the G tube in place. (We don't have to worry about that last one for several weeks at least.)

We'd been concerned about a challenging post-op recovery, since after her last surgery Eliza had needed to stay on the ventilator for two days, but this time, Eliza did amazingly well. She had actually already extubated herself (oops!) by the time we got to join her in the recovery room, and she didn't stay groggy for long and was back to her normal (hyper-?)active self by the end of the day. She was still, of course, admitted to the hospital for monitoring for the next couple of days to be safe and get her the painkillers she needed.

While we were in the ICN and TCN at Duke, the general day to day experience was of a stressful, unpleasant medical situation ameliorated by good, caring people. With Eliza as an admitted pediatric patient, however, the situation was reversed - her actual recovery over the next two days was fairly smooth but several of the people we had to deal with made it all worse. Several members of the pediatric nursing staff did not seem to respect us as her parents - they talked down to us, dismissed our concerns and questions, and just generally did not seem to welcome our presence.

The worst of it, I think, was Thursday morning. First, some background. On Wednesday, 24 hours after surgery, we began putting milk down Eliza's G tube to confirm that it was working properly, but we had some problems with it intermittently not draining properly (milk would just sit in the tube, not flowing at all). Everything we'd been told beforehand had indicated that with the G tube, the likely challenge would be keeping the milk from flowing too FAST (since the G tube is larger than her old NG tube and connects directly to the stomach), so this seemed worrisome. We asked the nurse practitioner about it, but she dismissed it immediately as "Oh, it's just a positional thing, you just need to hold her differently." (Are you an expert in G tubes? No? Then why not contact the surgical team or at least the resident doctor, rather than dismissing us out of hand?)

Then, the next morning, we heard the surgical team rounding with that same nurse practitioner outside our room's (closed) door. We were absolutely shocked and dismayed to hear her describing our concerns not only incorrectly ("the milk was flowing more slowly in the tube then they'd like it to") but also in the most caustic tone of voice ("well, I TOLD her that it was just POSITIONAL, but...") After thirty seconds or so we couldn't take any more of this and had to open our door and join in the conversation to set the record straight. Rude, perhaps, but she was being completely unprofessional and misrepresenting the previous day's events to boot.

(The surgery team agreed that the lack of G tube drainage was not a normal thing, by the way, but didn't have any suggestions for resolving it. My best guess is that it was a matter of post-operative swelling or similar, as the issue seems to have gone away on its own for the most part.)

We'd expected Eliza to stay in the hospital through Friday, but by Thursday afternoon we'd had enough. Eliza was healing well, needed nothing more than Tylenol for her pain control, and in general staying in the hospital didn't seem to be doing more for her than being cared for at home, and was stressing us both out as well, so we managed to get her discharged at 5 PM on Thursday and brought her home, where she continues to do just fine. Thank goodness.

So far the G tube does seem to be a significant improvement over the NG tube. We don't have to keep taping anything to her face now, and while we don't want her pulling on the G tube any more than we did the NG tube, the G tube is less in the way (baby hands tending to go to the face) and can be tucked away under her clothes when not in use. The early issues we had notwithstanding, milk generally flows much more easily and with less "persuasion" required. She's already sticking out her tongue less (one of the symptoms we had that the NG tube was irritating her throat), so that's good. Really the only way in which the G tube is a bit of a step backward is that it's a lot easier for Eliza to squirt milk/meds back out of it if she bears down or cries, so we have to pinch the tube shut when connecting or disconnecting syringes. In more than one gavage feeding so far, I've watched with amusement as the milk level in the syringe drops steadily to 2 mL remaining then suddenly rises back up as far as 20 mL when she squirms or tenses up. Who knew tension could have such an impact on the liquid pressure in your stomach?

And that's where we're at today. The surgery went smoothly, Eliza is home with a G tube, and we're free of the questions of whether and when to get the G tube - free to again focus our mental energy on moving forward with Eliza's development and feeding. Today, playing in her crib, she reached out, grabbed a toy hanging from the side rail, and pulled it to her mouth to give it a good licking - the first time I've seen her do that. I suspect the era of baby drool on everything she interacts with is about to start - I can't wait!

Sunday, April 17, 2011

First Trip

Eliza took her first trip out of NC this past week! Eliza and I decided at the last minute to hitch a ride with my mom and grandmother back to GA. I had been debating whether or not to take the trip since we were in flux about surgery and had several doctors appointments scheduled as well. About an hour before my family left we decided to be a little crazy and go anyways. Both of us needed a break from our house and from the doctors. We managed to pack everything and head out the door within an hour!

Unfortunately Eliza didn't get too much of a break from doctors. After a few bouts of vomiting and a couple phone calls with our doctors in NC we decided to take her in to see the pediatrician that I went to as a kid. That was pretty cool -- well as cool as taking your daughter to the doctor can be! Fortuneatly, the vomiting didn't end up being anything serious but it did interfere in our plans to see people we wanted to see though! Overall Eliza did pretty great with being in a new environment and ok with the drives. We really enjoyed getting to see some family and friends and are looking forward to our next trip to GA in a month or two!

Eliza weighed in at 10 pounds and 21 inches this week! She is almost twice her birth length and 8 times her birth weight now!

We were trying to pose a group shot - I thought this one was pretty funny! Sorry guys!

Checking out Grandpa

Kisses from Nana!

Thursday, April 14, 2011

"Babies will eat what they want, when they need it"

We hear some variant of this a lot. It's one piece of advice that people are quick to give us whenever they hear about or see us putting what Eliza didn't eat down her feeding tube. I know that it is meant with the best of intentions and in the majority of cases it's true, but not for Eliza. Feeding is hard for most preemies and especially 24 week micro preemies. Only spending 6 instead of 10 months in utero makes a big difference when it comes to oral skills.

For a very long time no one knew that Eliza had a feeding problem. While she had the ostomy she had to receive all of her nutrition by IV, since the amount of small intestine she had available was not enough to absorb the calories and nutrients she needed to grow. During this time we made sure to let her bottle feed whatever she felt like taking, just to help her develop her oral skills. She really liked to suck on the bottle and paci, but she was very ineffective and never took more than an ounce. Everyone thought her motivation would increase once off IV. And it did. After her surgery, she was clearly eating better, and plans were made for a quick discharge.

A few days before we were to leave, though, it became clear something just wasn't quite right. She had an increase in heart rate dips while she ate, she seemed to get sloppier and slower, and just in general unhappy. On further evaluation, the volume she was taking wasn't actually as much as they wanted her to, and pushing her only made it worse. This led to the nasal gastric (NG) feeding tube to supplement her eating. While her skills didn't seem to be improving, she was eventually discharged with the hope that the consistency of being at home would help, and with practice and weight gain that she would soon be able to ditch the feeding tube completely.

Eight weeks after leaving the hospital, after many many many (!!!) feedings and much experimentation with different positions, different scheduling, and different environmental stimuli or lack thereof, she just hasn't shown any real progress with her eating. For a little while she was doing better (as I mentioned in my last post), averaging as much as two ounces per meal and occasionally taking the whole bottle, but since then she's been backsliding and is once again at the point where she usually takes less than an ounce per feeding by bottle. She clearly won't be graduating from the NG tube any time soon at this rate.

Because the NG tube was always a short-term plan, and never intended for long-term use, it means we really need a plan B at this point. So far it looks like that'll have to be a gastric (G) tube, which means surgery to implant one. We have spent what seems like every conscious moment over the last couple weeks agonizing over this decision, talking to all of our doctors and therapists numerous times, changing our minds just as many times, and canceling surgery dates as well. But the bottom line is, she needs a G-tube, we are sure of that now. Of course we still hope that at some point she will be able to take all of her bottles, and if so then the G-tube can come out. If she never masters a bottle, that's ok too - it is after all a skill that she will eventually outgrow the need for. The important thing is that eventually she is able to, and has a desire, to eat solids and drink from a cup. We need to be sure that what we're doing for her in the short term (like trying to stay with the NG tube for a longer time) isn't sabotaging that long-term goal.

So now Eliza is on the surgery schedule for this coming Tuesday. If we don't freak out and change our minds yet again, she'll get her G tube placed and will probably need to stay in the hospital through the end of the week while she recovers, starts to heal, and gets her digestive system ramped back up. She'll keep the full G-tube, which will be fairly bulky, for at least six weeks or so while her body heals around it, then we'll have the option to replace it with a low-profile "button" that will be less bulky and easier to hide under her clothes when not in use.