Feeding tube tribulations

So that was funny huh? My sincere post about posting more and then I don't post anything for a month. Good going self! :)

There's been a lot going on with Eliza's feeding tube over the last month. I've been very slow to update about the fiasco we've had with Eliza's tube because its been ongoing but think we are finally moving out out of the chaos now. Hold on to your butts, long post ahead.

Oh about 6 weeks ago now (holy cow 6 weeks already) Eliza had a GI procedure. As mentioned before, Eliza has a case of reflux (GERD) not to be laughed at. There's been many a day we've cleaned up 4-5 projectile vomits a day. According to Eliza's Gastroenterologist most infant (and preemie-related in our case) reflux gets significantly better by age one. Since Eliza's only got worse instead, he wanted to rule out eosinophilic esophagitis that can cause reflux. He also wanted to get a good look at her esophagus and stomach to make sure everything looked typical. We also discussed getting her G tube replaced with a G/J tube (I'll discuss this more in a second). So since she was going to be under anesthesia for the upper GI scope anyway, we decided to go ahead and get the G/J tube placed as well, since it would require dilating her current g-tube tract up 2 sizes and this would be an extremely uncomfortable and drawn-out process for her if awake.

So first, the results of the scope and exam. We now know that she fortunately does NOT have eosinophilic esophagitis! The procedure also found her esophagus looks typical - for a child with reflux. However, Eliza's GI is concerned about a piece of tissue (pancreatic rest) in her stomach that is attached adjacent to her pyloric sphincter (as of course you MUST know, that's the opening to her small intestine). Basically, it could be intermittently blocking the formula's exit from her stomach into her intestines. He has seen this in another child that had regular vomiting and once they removed the tissue her vomiting stopped. But since we still have lots to think about with reflux, the plan is to leave this be for now.

Back to the G/J tube. This is an attempt to help Eliza with the reflux and also with oral feeding. G/J's look very similar to G tube buttons on the outside except with an extra port. But the structure is a lot different on the inside. There is a long tube connected to the extra port that is threaded into her small intestines (jejunum). Basically she can be fed into her stomach through the "G" port (like usual for her) or we can use the other "J" port to bypass her stomach completely and feed her directly into her small intestine (modern-day science is a crazy thing eh?). Of course formula has to be fed at a much slower rate through the J port, since intestines cannot handle large amounts of food at a time (otherwise known as a "bolus" in feeding tube world) but since she was already getting fed continuously overnight this wasn't going to be a big change for us. 


Some people require this type of tube because they can't tolerate or digest food in the stomach but for Eliza the situation is a little different.  The hope and plan for the G/J with Eliza is to: 1) be able to feed her a little more formula overnight on continuous J feeds and also eliminate any overnight vomiting (since there wouldn't be anything in her stomach to vomit) 2) be able to reduce amount we feed her by G tube during the day therefore also decreasing reflux during the day 3) Decrease her feeling of fullness (and discomfort) during the day 4) Having all of these combine to form a more encouraging environment for eating orally - less reflux, less vomiting, and less fullness should make for a baby who wants to eat more!

So the initial procedure to place the tube went pretty well! I was worried about anesthesia due to her past troubles with adrenal insufficiency. I asked the Anesthesiologist to keep a close eye on her and she did fine and woke up quickly. I asked our GI specialist about getting a back up G/J tube in case this one falls out (like her g tube has in the past) and he told me we don't get a back up since this type of tube can only be placed with use of a x-ray (fluoroscope to be specific -- but folks round the hospital just refer to it as radiology). Therefore we must come back to the hospital if anything happens to the tube.
Dun dun dun...

Next day: Eliza's tube started acting suspicious and right at 4:30pm it partly fell out. We taped it down to her belly so the whole thing wouldn't fall out... because if it did, her tract could rapidly shrink closed or even seal up entirely, which would need more surgery! Now with the timing of this incident (radiology closes early it seems) we had to go to the ER to get it fixed. Unbeknownst to us, the ER department can't place a G/J any more than we can - it seems they don't have a fluoroscope either. A resident fished a g-tube button out of the bowels of the hospital (literally what he said) for us to use in the meantime and off we went back home. (As it turns out the balloon that was supposed to hold the tube in place for months, was defective.)

Next day: Back to children's hospital, radiology department, and under the fluoroscope to get a new G/J placed. Mind you this is the 3rd time in 3 days Eliza's belly has been massively manipulated. Furthermore since we go to a teaching hospital the residents have to give it a good go first before they let the attending radiologist step in to get it properly placed. (Side note: Why do the parents have to hold their child down for these types of things? I want to be the soother, not the torturer thank you.. and making us do both things simultaneously pretty much means we're gonna suck at one or the other of those. One guess for which one!)  Ugh it was pretty horrible for all of us. But it was done and Eliza took a good nap after that. Did I mention this was a Friday? Yep dun dun dun again.


To be continued in part 2....

Beach Trip

For Mother's Day weekend, we were invited to join Heather's parents on Hilton Head Island. Since Eliza's last beach trip, she's grown so much and made so much progress developmentally (even if my prediction that "next year, we'll be one of the families walking hand in hand with their toddlers" was a bit overly optimistic) that it's hard to believe it's been less than a year since then.

The beach in mid-May turns out to be a bit early in season for Eliza's liking - though she enjoyed sitting and playing in the sand, the chilly breeze and bright sun (hardly a cloud in the sky!) were more than she wanted to handle for an extended period of time. After a half hour at the beach, trying to eat handfuls of sand and rubbing her eyes against the brightness and wind, she was well and truly coated with sand, so that counts as a successful beach trip right there. Across the three days we were there, we probably only spent an hour total on the beach, but it was fun anyway and good for Eliza too.

We spent more time at the hotel pools than at the beach. I'm not sure Eliza even noticed how cool the water still was - we got her out when she started to turn blue but I think if it was up to her she would have stayed in longer. She really likes being in the water lately! Bath time is probably her favorite time of day at home, and in the pool, floating free in her ring (with us nearby of course) really made her happy. We're signed up for swim classes with her in June and are really looking forward to it!



Since the official reason for the beach trip was a Rotary Club district conference (for Heather's dad), we were also able to cross paths with my brother Paul and his wife Michele, who were there for the same reason. It was the first time we'd had a chance to see them since December, so it was a very welcome visit. Unfortunately I didn't think to take even a single picture with them and Eliza!

That's enough news for one post, I think. Hopefully another post soon!

Changes?

Apparently keeping this blog up-to-date has somehow fallen off of my to-do list. Along with grocery shopping. I don't think I have been in 3-4 weeks. Luckily, I had (HAD!) a decent stock of food and we get a weekly delivery from the farm so no real lack of food here.

I've been struggling with what's happening with this blog and that's been demotivating for doing any updating. Lately it's evolved into an irregular, sanitized, and general update to family, friends and whoever else wants to read. Ideally I would like to see it be more of an accurate, day-to-day view at Eliza's childhood. The ups and the downs and all the nitty gritty in between. I think we've tended lately to highlight just the positives and especially the "normal" child milestones. Probably cause it's easier, and we don't want to feel like we are complaining about any of the downs or the struggles that we go through....cause people definitely have it much worse.  But this is our story and I think we owe it to ourselves and to Eliza to document it completely and honestly.

Perhaps others are also interested in a closer view of one baby's (and her parents') journey through overcoming her much too early beginnings, and perhaps not. But even if not, this is Eliza's only baby book, so we need to at least keep it current for her! Poor kid, she doesn't get anything normal.

So we will see if we can manage to make changes around here... since living the nitty-gritty seems to take time away from writing about it. :)

And to make up for all that  philosophizing here are cute pictures of babies (from way back at Easter, woops!)

 

Any resemblance?

Looking through pictures of Eliza from last month, we were struck by one in particular. Eliza seems to be looking more like her Daddy lately, don't you think?

Plane Ride

Eliza took her very first plane ride over Easter weekend. We were super nervous since we decided to fly "Infant in Arms" instead of buying her own seat. (Cheapskates.) We had valid reasons for concern. Eliza likes to constantly move, my friends. Sitting contently on a lap? No. She is a wiggle worm; she pulls, yanks, tears, puts-in-mouth everything she can reach. We were also overwhelmed thinking about lugging a bunch of baby stuff, and a baby, around the airport. Plus, we didn't want to pay (cheapskates) to check any bags. Therefore due to some very creative (skimpy) packing and my mom having a well-stocked house, we ended up only taking 2 small rolling suitcases, a backpack, a diaper bag, and one large toddler car seat. This feat of minimalism would've been hard to accomplish if we were going anywhere other than Nana's house, but for this trip it worked!

After doing some research on traveling with a car seat I came across this little gadget: traveling toddler car seat strap. It was inexpensive (remember, cheapskates?) and a good solution! It basically turns one roller case and car seat into a stroller. It was pretty easy too. It took a little practice to get the tightness of the straps right but once at the airport things went fairly smoothly:

1. Take car seat out of car and decrease recline of seat. 

2. Use strap to attach seat to case with LATCH system. (A matter of click, click and tighten)

3. Unclick at security and put everything on conveyor for x-rays.

4. Reattach easily on the other side (while juggling baby and waiting for spouse to get the full-body pat-down by a TSA officer).

5. Nod and agree with strangers about what a good invention it is. (the strap, not the pat-down)

6. Planeside, detach and check car seat into baggage, and carry baby onto plane. 

Pretty painless! 

Riding the concourse train in ATL

As for baby wrangling while on the plane: It went pretty well too. I think it would have been impossible for one person to keep her contained for the whole flight, but with two of us, it went just fine! Eliza spent a lot of time climbing between Glenn and me, leaning backwards to check out the aisle and people, looking at books, listening to us sing at her, shaking rattles, slobbering on Delta cookies, and making friends with some of the flight attendants. She even got her picture with the pilot in the cockpit! (After we landed, of course!)

She looks a little freaked here but she gave him a shy smile right before this. :)

He's Here!

My nephew made his long awaited appearance on Friday, March 30th!  This was 6 whole days before our scheduled trip down to Georgia to meet him. I kept telling myself it was only few more days, and that worked on Friday... but by Saturday morning I couldn't wait any longer and I was in the car making the long drive to GA on my own. Glenn was awesome to handle the house and Eliza for the weekend and he even downloaded a digital audiobook for me to listen to on the drive.  Good hubby isn't he?!

I am so proud of my sister! My nephew is a super cute, sleepy, and healthy little man. I was so honored to be there for the first couple days of his life!

Benjamin - born 8 lb, 8 oz, 21 inches long. What a cutie!

As a side note: apparently there are still hospitals out there that haven't gotten the message that “breast is best”. Theirs was one of those hospitals. When a woman wants to breastfeed and you deter her and suggest that it is NOT what is best for baby? CRAZY. We're still shocked about that one!

Coming soon!

My sister is having a baby any day now! We are so excited to meet the new baby boy! I can't wait for Eliza to meet him and have a new cousin to play with. In February we threw my sister a shower to help her get ready for this new, exciting, and expensive time in their lives! We had a great group of people join us and I had a good time creating things for the shower. I left all the yummy, creative food prep and coordination to my mom, grandmother, and aunt and they did an amazing job! I wanted to share a few pictures on here from the shindig, but of course I completely forgot to take even one picture. :( I think that makes me a very bad at this blogging thing. Fortuitously my brother-in-law took some pictures. We went with a "Cute as a Button" theme for the shower.

The yummy food spread

Another of the food and  the flower arrangement created by my grandmother

My gorgeous sister



The loot! Also, a beautiful afghan by my mother for baby b.


Trike diaper cake. My mom and I had fun putting this guy together!

Button cake, cake pops and pretzels. Cake was red velvet with cream cheese icing and fondant buttons!



Close up of fondant buttons created by my mom

Shadow box of invitation and button flowers

'Cute as a button' cookie favors that my mom outdid herself on. These were super cute. Sorry no close up picture of these!

Button flower arrangement. These were a lot of fun to make and hunt buttons for.

My nephew's nursery. My sister did a great job of putting together this room. It is so sweet and full of love. My mom, sister and I spent a few days over the holidays making these yarn eggs and I think they look great hanging in the corner. 

 

I made this fabric garland for the room. It's the same pattern of the one I made for Eliza's first birthday but with colors to match baby b's nursery.

Everything is ready (well, as ready as can be) for baby b so now we are just waiting to meet him. I know he will be cute as a button (or much cuter!) :)