G-tube

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!

3 Months Adjusted

Eliza is 3 months old adjusted (since her due date) and 8lbs 10oz as of her last weight check at the pediatrician a few days ago. It's a little strange to have so many different ages for Eliza (actual, adjusted, developmental). Just today a physical therapist* from our county Early Intervention program was calculating yet a different age. I find myself having to pause and think about it when someone asks how old she is. :)

So what is she up to?

-- Continuing to babble and smile. She is the most happy and smiley in the mornings. I cherish the mornings with her when she is happy and calm. As for the babbling, she uses it when she is content and when she is working herself into an over-stimulation melt down.. noticing the difference can be quite tricky.

-- Sat in the bumbo seat for the first time. She's definitely not sure about it yet. I'm fairly certain she's thinking "what is this weird contraption that's making me bend the opposite way I like to be." Thanks to all that time outside the womb, Eliza is pretty stiff and gets herself in a backward swan-dive position when left to her own devices. Practicing for the high dive I believe!

-- Found her mouth with her hands. She gives them a good lick but hasn't worked it out enough to prefer it to her paci.

-- Fighting naps with a vengeance. She is pretty much on hyper-alert when she is awake during the day and she only has short periods of calm. The hyper-alert times transition into full melt down in the blink of an eye.Thanks to some advice from the Doula we are watching the clock more to try to get her into a better sleep pattern during the day. I think it does help when it works but it means I spend most of the day trying to get her to sleep and when she finally does go to sleep, trying to keep her there.

-- And as of the last week - getting better at her feeding! No really! For the last few days the volume she has been able to take by bottle has increased quite a bit and she's even taken a few full bottles! Do you know how good this is?! Let me explain:

I gave E a good talking to last week after our Speech therapy follow up (Speech therapists, along with occupational therapists are the ones that help with feeding skills) at the Special Infant Care Clinic and she must have been listening. At our appointment last week they were concerned with how little progress she's made feeding-wise. Apparently most babies if they are going to be make progress with the NG tube then they will within the first month of having it. She's had it almost 8 weeks now and before this last week there was very little progress in how much she is taking by bottle and her state (attitude) while eating by bottle. She's usually quite unhappy while eating and trys to pull away by arching and squirming. Previously this behavior has been attributed to reflux and even though she does have reflux no one believes that is the main cause any longer. So their suggestion? A g-tube or gastrostomy tube which would replace her NG or nasal tube. A g-tube provides direct access to the stomach instead of going down the nasal passage and esophagus. It would mean major surgery. I was shocked! I was not expecting this to be suggested since during all previous complaints by us about how poorly she fed we were met with some version of "She's gaining weight fine and just give it some time, as she gains weight it will get better." The story had changed all of a sudden. Since she hasnt made quick progress she will probably need help (either NG or G) for many more months and there is concern with the NG tube affecting her development negatively. I definitely can agree with this. I hate having to put the tube down her nose every couple of days when she pulls it out and the frequency will increase as she gets older. We have to worry about inflammation and irritation all in the area that we want her to have positive feelings about. There is a lot more to this of course but in summary what we have gleaned is that-- the NG tube is the less invasive, better option for short term situations but when it looks like things are going to require long term intervention then putting in a G-tube works best developmentally  We don't want Eliza to have to go through another major surgery but we also want to do what is best for Eliza in the long run. The fact that she is making improvements this week is great! We are hoping that it continues and is enough improvement to not have to make the surgery decision. We have the first consultation with the surgeon this week to talk about things. We will see.

Oh look, feeding talk has hijacked my post.. thats a pretty good representation of our days as well. Ok I am done with this post.. I need to get to bed while Eliza is sleeping! More sometime later.


*The physical therapist was here to assess Eliza's development and see what if any therapy she currently needs. Fortunately she thought gross and minor motor skill-wise Eliza was doing OK and didn't need weekly therapy yet. Of course they agreed that she needs feeding therapy and hopefully will have someone out here soon for weekly sessions.

5 Months Old

On February 8th Eliza turned 5 months, or as they say Day of Life one hundred and fifty two! She's accomplished A LOT of growing in the last month. She's now up to 6lbs 5ounces and rapidly getting too big for her preemie clothes! The true test of her growing has been since her last surgery - whether her digestive tract would get it together enough to let her absorb enough calories since she wasn't able to do this before. And the answer is a definite yes! She's been averaging about an ounce a day! :)

Daddy's little girl.

Practicing tummy time on Mom. 

Family portrait before Eliza's surgery.

My favorite thing - a nap on anyone's shoulder!

Deciding to try and eat a finger since everyone seems to be slow on the bottles around here! Can you see the beginnings of fuzz on my head??

Catching a nap wearing mom's favorite hat! 

About 10 mins before having to get the NG tube put back in :(... looking like a porcelain doll. 

After surgery

Eliza's surgery on Thursday went as well as we could have possibly hoped. They took her down to the O.R. right on schedule, and called out to the surgical waiting area at 2:15 to let us know that they'd started - right on time. By 3:45 the surgeon was able to come out and tell us (including Eliza's cheering section of Nana, Granny, and Grandma and Grandpa, all of whom were able to be in town for the surgery) the good news. They'd inspected the full length of her intestine and not found any remaining perforations, and had flushed liquid through it easily with no sign of strictures or obstructions. She only lost about 2-3 cm of intestine during the reconnection process, and after stitching her ends back together they were able to confirm that the connection was watertight. All in all a very successful surgery.

When we were able to go back in to the ICN to see our recovering surgical patient, we were struck by how much bigger she looks without a giant ostomy bag stuck to her stomach and stomas protruding into it. It's a more dramatic change in her appearance than we were expecting.

Now, of course, it was time for her to rest and recuperate from her major surgery. That's been difficult so far for her and for us - it's been a real balancing act between giving her enough morphine frequently enough to keep her pain under control, and on the other hand not giving her so much that it depresses her breathing and requires additional respiratory support. (She was put on the ventilator for surgery and stayed on it for about 24 hours afterward, then graduated to the nasal cannula where she remains for now.)

Heather was at the hospital from 8 AM to 11 PM yesterday, watching and caring for Eliza with assistance from her mother and grandmother (during the day) and me (during the evening). Eliza was having a rough time of it all day, causing Heather a lot of stress and exhaustion. She was having bradys and desats every five to ten minutes - she would flinch or wince, causing her pain, and then drop her heart rate or hold her breath. Sometimes she would be OK for a while, letting us think that she was starting to do better, then surprise us with a sudden big brady. She had several events where she would brady continuously or repeatedly for several minutes, and she had at least one desat where her oxygen level dropped to 20% (!) and took a seeming eternity to come back up to healthy levels. It was seriously scary and stressful.

To add to our stress, the nurse practitioner in charge of Eliza during the day was tending to err on the side of not allowing her enough morphine. We had to really fight to stop cutting back further on her dosage and instead give her as much as she needs. Shortly after we left for the night at around 11, they finally managed to give her enough morphine and she was able to sleep well from midnight to 6 AM or so.

We're back at the hospital together today. Eliza has already had a few bradys and desats this morning, but we're hoping for a better day than yesterday. The care team today is okay with keeping her at her current morphine dosage if she needs it (they were even discussing increasing it a bit!), not trying too aggressively to wean her off the nasal cannula, and just in general leaving her alone to rest and heal. Hopefully that's exactly what she needs right now. Heather is holding her for the first time since the surgery as I write this, and they both look less stressed and more content then they ever did over the previous day and a half.

Reanastomosed

Eliza is scheduled for 2pm tomorrow to be reanastomosed. This surgery is to reverse the surgery that she had when she was 7 days old because she had developed either NEC or a spontaneous bowel perforation. To keep her intestines from dumping stool into her abdominal cavity they pulled out a loop of her small intestine as an ileostomy so that her lower bowel could heal. Since she was so small and fragile when she underwent the inital surgery (about 1 pound) they had to be extremely careful. One of the comments that the surgeon said when asked how it went was "well, her insides are like wet tissue paper." I'll never forget that. (Yep, we have the same surgeon tomorrow... hopefully the description of her insides will be a little more positive this time :) ) 

She (and we) have been dealing with this for the last 4 months. And it's finally time to fix her. This surgery is a big deal and quite invasive but it's what she needs and we are glad that its time to finally do it. Fortunately from the study they did on her last week it looks like the downstream part of her bowels look great. They don't see any strictures or other problems, though they will not know for sure until they get inside. Hopefully everything looks great and the surgery goes pretty much as intended. That's what we'll be hoping, praying and crossing our fingers for!

Getting ready for surgery, hopefully?

As Eliza closes in on the magic number of 2.2 kilos (she's at 2.195 tonight!), that means it's almost time for her surgery to repair her ostomy... or so we hope. We've had a heck of a time trying to pin down the surgeon to actually meet with us and put her on the schedule; it's like he doesn't actually want to operate on her. One of the nurses told us this is pretty common - they try to stall as long as possible so the baby can keep growing, making the surgery easier. Understandable but frustrating - this is the milestone we were given to aim for (after the previous milestone of 2 kilos...), and the surgery is the single biggest thing standing between her and coming home.

Plus, it's more and more clear every day that this should be done SOON. Her PICC line (required since she isn't getting enough nutrition from her digestive system, more on that later) was probably the cause of her recent infection, and is always a risk for introducing another one. The IV nutrition from the PICC is hard on her liver, though she's handling it well so far as we know. Her stomas are continuing to be more prolapsed and more swollen every day, and are starting to get eroded and lacerated from rubbing up against her ostomy bag.

In short, she's reached the point where we (and all of her care team) agree that it's better for her to get the surgery NOW rather than to keep waiting. If only we could get the surgeon to agree! We've tried to meet with him the last two days with no luck (though yesterday he did stop by after we'd already left for the night) - here's hoping tomorrow's the charm!

We did get one step closer today - they did a barium trace to confirm whether the "downstream" parts of her bowels are in good shape to start being used once they reconnect her. The results look good - everything seems to be in good working order - but they also confirmed something we'd been suspecting. Her ostomy is not nearly as far down the line as they'd been telling us; she has a significant amount of small intestine downstream from the ostomy that is therefore not currently available to aid in digestion. This is good news, since it explains why she's been dumping rather than digesting efficiently, and why she hasn't ever been able to gain weight well from purely oral feeding, but it's a bit frustrating too that we've been mistaken for the last four months. Still, it's a good sign that she should be able to do much better once she has the surgery.

Here she is twiddling her thumbs - she can't wait either!