How grateful I am that I didn't know, and don't know, how long this tube would be/will be with us.
But a year seems worthy of commemoration and I haven't written much about daily life with a "tubie," as they say, and so now I bring you both the accolades and the trials - a little glimpse into the grunt happenings around our place. Some of it might make you queasy, if that's your way. Also, this is also a very long account. Consider yourself forewarned.
Let's start with g-tube 101. It is a "button" which is surgically placed. The external side you can attach a feeding tube to, and the internal side has a little balloon that is filled up with 4-6 ml of water. It is an open wound that I change gauze on daily. I never understood a love/hate relationship so well until I met our little g-tube attached to my failing baby.
There are a few obstacles to be overcome when you're feeding a child through a tube. First of all, the baby has a little 12 inch length of tubing with connects to her little button and this connects with the tubing from the pump. Now, the tubes have to be able to pull apart from each other because otherwise her tube will come out completely from the site - and that's no good. But it's also no good if they get pulled apart because suddenly the pump side is "feeding" whatever thing it landed on and kid side of the tubing is gushing everything out of the stomach that you just worked so hard to fill up. Also, the kid side has a little med port, which is really nice when I'm giving meds, but super not nice when Annika flips it open like she does (and, once again, empties her stomach contents over everything). We have wisened up and we now tape this portion of the tube to her back if she's feeding during the wakeful hours of the day.
Second obstacle. The pump can be time consuming, alarms become status quo, and sometimes they stop working completely. Our old kangaroo joey jammed up all the time. I spent my life trying to unjam that silly thing which usually didn't work out and so I had to unthread the bag, get a new one, and prime everything through again. This sounds really fast when I write it. But it wasn't. And if the baby was hungry or the other kids needed something....well, you get the idea. I remember working with it one time when we thought we might actually make it to church on time but then it started alarming and we had to pull into a side street and a cop drove by us a couple times, I don't know why but I guess we were okay, and the kids were sitting there patiently because they were already used to it and we didn't make it to church on time. This was, and is, a typical story (the late to something because of the pump part...not the police part). Although, I'm happy to say, it's happening less often these days. Anyway, it can jam because a glob of formula is stuck or there's a kink/twist in the tubing somewhere or I forgot to unclip the clip on Annika's part of the tube or it's not sensing the food or it was fed some air. The joey didn't care about air. It fed it right to Annika which was super fabulous when she was vomiting all the time and wasn't able to burp because of her Nissen surgery for her reflux. FYI-we like our new pump better. Get a zevex. Lastly, if the thing decides to die on you, you get to call the medical equipment provider to send one out to you stat. I think we're on our 4th pump.
Third obstacle. Ignorance. We had no idea what we were doing when we first got this thing. I mean, the basics, but no idea. And I really had no brain to think of anything on my own and I didn't want to read about feeding tubes because I was touching them all the time and I thought my doctors would have told me anything I needed to know. In retrospect....wrong! I finally had an urge, sometime last fall, to find some connection with others who lived with these things every day. I found feedingtubeawareness.org which led me to message boards, blogs, and stories of kids who had been weaned from feeding tubes. It encouraged me, gave me hope, and educated me. I learned about how to mix the formula I'd been using in a way that wouldn't jam the pump. I learned that I could use ice packs during the longer daytime and night feeds so that I didn't have to get up every four hours, but only at the finish. I learned that I should be using medical tape a LOT more. I learned that we were in a good, good place and that there were so many others with less hope.
Fourth obstacle. The button can come out completely. When this little one was learning to crawl and before I realized the great benefits of medical tape, she pulled her button out of her stomach frequently. Frequently! I remember one day it was 3 times-but that was excessive. So, when the button comes out, you have a hole in your child. You must lay your child on her back so that the stomach contents remain stomach contents. You must tell your 7 year old and 5 year old (then only 4) that you have an emergency and they go, wash their hands, and get the necessary supplies (gauze, syringe filled to the 5-6 ml mark with water, water-based lubricant, and a new button if the old one looks gross). Your 2 year old (now 3) is hopefully behaving himself. You then reinsert the tube and fill it up with water. Sometimes it's hard to get in and the tube bends and she's crying and it's really sad for her and you - but better than letting some doctor do it. Other times it goes right in and she looks at you like she's unsure if she should cry or not and she's surprised that she's not. But you make a funny noise and she laughs it off. One time the button came out during the night and the hole was too closed for me to reinsert in myself which meant a trip to the ER where they checked us in and then checked us out soon after and sent us upstairs to the surgeons office where he used smaller to larger metal pokers to distend the hole back to size. It was horrible. And it was without anesthetic. I hope it never happens again, but if it does, they will use anesthetic!!!
Fifth obstacle. The child wants to be mobile but she's connected to a machine. This was especially sad when I didn't know there was a backpack and she had to be attached to the IV pole all the time. The transition to backpack was wonderful - but it had to be upright or it fed her air (and she was moving all the time so how do we always keep it upright?) and it was too heavy for her to carry herself. Therefore, I have spent a lot of time this past year holding Annika's backpack while she plays. This takes great skill and maneuverability. :-) When we switched pumps, things got even wonderfuller (why not?!) because it was lighter, the backpack was smaller, and the pump could be turned different ways without feeding air. Really fabulous! She was carrying it around on her own superbly, but then she fractured her arm falling down some stairs the day before Easter. It was just too sad to see a little 16 month old with a full arm cast carrying around her own feeding tube bag. But the cast came off 10 days ago, and she's been off and running with her little backpack again. There are times when she does not want to carry that bag around and she thrusts it at me in frustration and I either follow her around with it or call a kid to be on "Annika duty" for the remainder of her feed ("The worst part of my day!" says Isaac. Adela likes it, though). All three of them are so good with her in general. When they see that she's pulling at her tube because she's left the bag behind, it's become almost second nature for them to carry the backpack over to her.
For most of the year, Annika has been on a strict feeding schedule of every three hours during the day in order to meet her weight goal. So 7, 10, 1, 4, and 7 we measured, filled, primed formula through the tubing and started the feed. When she finished, we cleaned out the bag with water and flushed water through the tubing. This is time consuming even when you don't hit a glitch. That was our process May 2013-February 2014. Around February, we received our new pump AND I read somewhere that we didn't need to be rinsing out the bag every time but can just take it out from the pump and store it in the fridge between feeds. None of the nurses or doctors told us this option, but it's a discovery that has revolutionalized our lives! Now I don't have to measure because I can program the pump. I can fill that little baggie up to the brim in the morning and just use an ice pack throughout the day and/or throw the bag in the fridge. And to make things better, Annika now has only 2 feeds during the day because she's now getting most of her calories at night so that her daytime appetite will pick up (and she's swallowed a little bit more...I do think it's helping).
Her feeding speed has varied, but has averaged at about an hour per feed...so she's been essentially an hour on and two hours off. Unfortunately, back when she was vomiting so much, when we felt that she'd lost most of the feed, we'd start over and the 3 hour count would change times - also the speed would slow so that she was connected to the pump even longer. And then there were those days, I thankfully can't remember even the month, when she was on continuous feeds for 20 hours a day because she couldn't tolerate more than an ounce and a third each hour. The speed of her feed is always changing. When she's sick in any way, she tolerates less (vomits more) and so we have to slow her down again. It takes a few weeks to work up to the speed she was at before the sickness.
One of the things we do is "vent" our baby. Most people burp their babies but we attach a large, empty syringe (with the "sucker" part pulled out) to our baby's tube in order to vent the air out. Sometimes it bursts out in bubbles, sometimes it makes an actual burping sound, and sometimes it simply vents and you can't see much. Venting happens a lot more often on those sick days when I do it every 3-4 hours. Normally it's once a day and, lately, I've not been doing it at all because Annika has started to burp and she doesn't seem to be uncomfortable. We can also use this same method to take food out of her stomach if she's looking green or if we need to see how much she's digested (which we did a lot in those first months when we were figuring it and her all out). It's important to hold on tightly to the connection between the syringe and the tube because if you don't and she makes a quick move, you might suddenly shower yourself with partly digested formula.
*********************************************************************************
As for now, my day looks a little like this:
2 or 3 AM - shut off the machine. untape, disconnect and flush out the tubing. (James and I switch off nights)
8 AM - put Annika in her chair and try to feed her breakfast. she's usually not interested but if we cheer a lot she will take a few bites.
10 AM - put Annika down for her nap and give her a dose of stomach emptying medication. after she's asleep, sneak into her room (my room!) and attach her to the tube. the child is used to this and so it usually goes well. after the feed is done and the alarm beeps, sneak in again, flush the tubing, sneak away. she gets about 5 ounces over around 35 minutes time right now.
12 PM - back in the chair for lunch. she likes to try most things but spits most food out when she's done.
2 PM - another feeding attempt in her chair because she's hungry.
3 PM - another nap and another sneak into the the bedroom. i'm trying to do her tube feedings while she sleeps so that she doesn't associate it so much with satiating her hunger. we want food to have that association.
6 PM - dinner time and more chewing
8 PM - a couple more medications (stomach emptying and reflux). change the gauze around the site. vent her (if needed). put her to bed. change the settings on her machine to a slower night feed (2 1/2 ounces per hour). tape the med port shut and use a clamp to hold the tubing together throughout the night. tape all of that together too because Annika chews it apart.
10 PM - check everything before going to bed to make sure she's not twisted or leaking anywhere. adjust and/or change sheets if necessary.
*********************************************************************************
All of this might look like a lot, but it's so much less than it was and I'm starting to feel like we're more of a "normal" family. Yes, the time it takes to care for Annika is still more than your average baby, but the gap has lessened substantially. Hallelujah!
With every darkness there's at least a spot of light. At first, I thought there was only a smudge of brightness to be seen, but now I'm seeing more and more the shining beauty that has come from this. Firstly and practically, at times it's lovely to have direct access to your kid's stomach. When she doesn't want to take her medication by mouth - down the tube. When she's sick and getting dehydrated - pedialyte down the tube. And, most importantly, when she will not eat (which is why she is a tube fed baby in the first place) - food, down the tube! And this baby is growing and developing and exploring like every other little 17 month old and she's vivacious and chatters away in her own language like anything. I shudder to think of how she would be without the tube, and wonder if she would even be with us anymore. I'm not at all certain. Actually, I'm more certain that she wouldn't be.
The brightest point of having a feeding tube as part of our lives is the transformation that has occurred in our family. It's been a process with lots of groanings along the way. But, ultimately, we've had to learn patience - so much patience. We've learned to cherish one another more because the reality of each temporal little life has sunk deep. We've learned to embrace the sufferings that come our way and to trust that God has a reason for the pain in the big painting of eternity. We've learned the importance of stopping, resting, and rejuvenating. For many, many weeks I was unable to attend church. I've learned how to incorporate worship into the every day and it makes my heart leap to hear my little children singing out random praise, "This is my stooooory! This is my song! Praising my Savior, all the day long!" We are not close to perfection - as none of us can be this side of heaven, but it's a beautiful thing when you can see the fingerprints of God all over a situation which felt so distant from Him only months before.
As I write this out, it's difficult not to add in everything else that went along with the story, because the feeding tube is only a part of it. There's also the vomiting and heaving and record keeping and doctors appointments, the oral attempts at feeding and, really, everything that led up her getting it in the first place. And there is the endless line of people who have embraced us. But all of that is in a different post for a different day-some of it already written.
Thus ends my tribute to the horribly beloved g-tube. We give thanks to God because He has given man the inquisitive mind to explore and to learn about this complex body He has created for us. We thank Him for giving our family the opportunity to experience the life of a child who wouldn't have had a chance a century ago. And we thank Him for the breath of life we breath today because who knows what tomorrow holds? We do not know. But we do know that we are so very blessed!
As are you. Praise Him!
This has been a theme song this past year:
https://www.youtube.com/watch?v=KNYnXwkWrnw
Psalm 139
1 You have searched me, Lord,
and you know me.
2 You know when I sit and when I rise;
you perceive my thoughts from afar.
3 You discern my going out and my lying down;
you are familiar with all my ways.
4 Before a word is on my tongue
you, Lord, know it completely.
5 You hem me in behind and before,
and you lay your hand upon me.
6 Such knowledge is too wonderful for me,
too lofty for me to attain.
and you know me.
2 You know when I sit and when I rise;
you perceive my thoughts from afar.
3 You discern my going out and my lying down;
you are familiar with all my ways.
4 Before a word is on my tongue
you, Lord, know it completely.
5 You hem me in behind and before,
and you lay your hand upon me.
6 Such knowledge is too wonderful for me,
too lofty for me to attain.
7 Where can I go from your Spirit?
Where can I flee from your presence?
8 If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
9 If I rise on the wings of the dawn,
if I settle on the far side of the sea,
10 even there your hand will guide me,
your right hand will hold me fast.
11 If I say, “Surely the darkness will hide me
and the light become night around me,”
12 even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.
Where can I flee from your presence?
8 If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
9 If I rise on the wings of the dawn,
if I settle on the far side of the sea,
10 even there your hand will guide me,
your right hand will hold me fast.
11 If I say, “Surely the darkness will hide me
and the light become night around me,”
12 even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.
13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
17 How precious to me are your thoughts, O God!
How vast is the sum of them!
18 Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you.
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
17 How precious to me are your thoughts, O God!
How vast is the sum of them!
18 Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you.
