Every Good and Perfect Gift

A friend of mine was telling a group of us about a friend of hers who was very blessed with material things.  She then went on to say that she was also blessed with two perfect and perfectly behaved children.

And this got me to stop and think:

If this woman is 'blessed' to have two 'perfect and perfectly behaved' children, then am I not blessed because my children are not all 'perfect' and 'perfectly behaved'?

Am I not blessed because I gave birth to two children with special needs?  Are we, then, as a family, not fortunate?  Not beloved?  Not chosen?

But James 1:17 states clearly:

Every good and perfect gift is from above, coming down from the Father...who does not change like shifting shadows. (NIV)

Now, I am going to go out on a limb here and say, if every good and perfect gift comes from the Father, then I choose to believe that every gift from the Father is good and perfect.

We cannot dispute that fact that our children are gifts, and from where else do gifts such as these come except from the Father?

Which to me means, dear friends, that my children, with all of their struggles, are good and perfect, designed as they were intended to be designed, with life, beauty, and a purpose,

and so are yours.

This doesn't mean that every day will be a perfect day.

This doesn't mean that bad things won't happen.

This doesn't mean that they won't make bad decisions sometimes...a lot of times...seemingly always.

And it certainly doesn't mean that it will be easy.

But it does mean that we are blessed.

All of us, with our perfectly 'imperfect' children,

Are blessed,  most definitely

Blessed.

Feeding Hazel Grace

The snow has fallen, the streets have been somewhat plowed, the children have been bundled, sled and snowballed, unbundled, hot-chocolated, fed, pajama-ed and finally kissed goodnight,

and I have shut the door to my room...

with me on the inside, and everyone else on the outside,

and I breathe a sigh of relief of a day well done.

These last few weeks have been a nonstop flow of days best described as survival of the fittest,

and I often fall into bed at the end of them wondering if I am truly the fittest.

Hazel's feeding issues have yet to be completely resolved, although we are much closer to a happier solution.  To make a long story shorter, when Hazel was in the NICU, she was being fed my breast milk mixed with Enfamil powder to increase the number of calories per ounce of milk since she was so small and her little tummy could only process but so much volume.  Then, she began to drink from a bottle.  She would be fed as much as she could through the bottle, and then what she could not eat by mouth, would go down the tube.

The next step was that I would nurse her before her bottle once a day while I was there.  Then, she would be offered the bottle and then the rest would go down the tube.

But when she got home, and she started to nurse more often, her body began to reject the powdered formula that we were mixing into my breast milk to put down her tube, and she began to have more reflux.  So, the powder was stopped, but that meant that the volume of her intake had to increase.

She had a good latch, though, and was nursing well, which was our goal, and so, when we went to the surgeon to check on her tube placement and healing, he recommended that we stop the tube feeds altogether during the day and just tube her at night and breast feed her during the day to encourage her to nurse and to increase her stamina.  Well, I didn't quite agree with that, because it seemed like a big jump to take away all tube feeds during the day, and a call to the pediatrician confirmed what I thought, and together we came up with a plan to nurse her every other feed during the day, and tube all the rest.

That was going ok, but when we went back to the pulmonologist, she said that Hazel was not gaining enough weight, so we needed to increase her feeds from 90cc's every 3 hours to 120cc's every 3 hours.  Around the clock...day and night.

Well, we can guess where that headed!  Hazel's reflux came back with a vengeance!  There was no way that her tiny self could tolerate all that volume increase so quickly!  But I was nervous because Hazel had not gained weight, and the doctor wanted to put her back on the formula mixture, and I knew that would be worse.  So, we slowed the feeds way down and did everything we could to get her to take that volume.  In addition to that, I suddenly had to produce 120cc's every three hours in addition to the little bits that she would nurse.  She wasn't really nursing well anymore because she never felt hungry because her tummy was always full, so I had to pump every 3 hours, around the clock.  I only skipped the 3AM pumping session, even though I still had to get up to hang her feed.  I felt like I was pumping and feeding Hazel constantly!  As soon as one feed was done, I had to pump and prep the next one!

Then, the week before this past week, Hazel's reflux hit so hard that she could not keep anything down.  She would vomit the entire feed either right after it was done running or within a half an hour.  But, since she was holding nothing down that went in by tube, she was hungry and started nursing more, and she would keep whatever she got down from those sessions.  Sometimes it was a few swallows, but sometimes she would nurse til she fell asleep (oh, the glory of that feeling!  I didn't realize how much I missed it til I had a little glimpse of it!).

We were due back at the pulmonologist and I was dreading the scale there, but there was just nothing to be done about it.  If Hazel couldn't keep her food down, how can the child gain weight?

Then, last Monday, a day before the pulm appointment, Hazel started vomiting blood.  It wasn't a lot, but it was enough to cause concern for both me and Hazel's nurse, so we went to the ER at Children's and on the way, I made a follow-up appointment with gastro for the following day, knowing they would tell me to follow up with them anyway.

We were told in the ER that the blood was 'merely' due to the irritation of her esophagus due to the acid in the reflux that she was constantly experiencing.  We were told not to worry but to keep an eye on it, come back if it got worse, and...follow up with her gastro doctor.

Since I had already made the appointment, we got in the very next day, and explained the situation.  We decided to adjust her feeds so that she gets a continuous feed of 400cc's overnight, from 10PM to 6AM and then from there, she would get only 100cc's at 10AM, 2PM, and 6PM, with nursing on demand between those times, with the liberty to change the rate or the dose as Hazel needs and we see fit as long as she is getting at least 620cc's per day.

You can not imagine the change this has made in both of our lives!   We have had to change the start time of the continuous feed from 10PM to 7PM because she was still having a hard time keeping the milk down even as slow as it was running, but other than that, she has done famously, and this means...(drumroll, please...)

I DON'T HAVE TO PUMP EVERY 3 HOURS ANYMORE!!!!

Yes, folks, for the first time since Hazel Grace has come home in December, I do not have to pump every 3 hours.

This is such a HUGE relief!  I am producing pretty much the same volume, and I know that if I ever need more, I just need to pump more, but I am no longer tied to the pump every 3 hours!

In addition to that...Hazel is not connected to her feed tube 24/7!  That means that there are actually times during the day when we can even take off her extension and tickle her smooth tummy with just a little button off to the side!

Oh, the joy of it all!

I never thought that feeding such a small child could be so stressful!  I am constantly counting milliliters and calories and hours and rate and volume and I often doubt myself as to if what I am doing is right.

Am I slowing Hazel down and delaying her development by not giving her bottles?  Is my personal desire to nurse my baby detrimental to her overall well being?

I ask these questions repeatedly to both myself and her specialists and doctors, and I always get the same answer:

We don't know.  Probably not, because every baby is different, every day is new, and every experience is a brand new turning of a clean page.

So, the bottom line is, I feel in my heart that I want to hold my baby and nurse her as I did the others, and I see by her health that what we are doing is working for her, so all that is left is to trust.

To trust to One who put it all together to begin with:  Baby, Mother, Milk

Perfect food, perfect plan.

Our Friend MIC-KEY (Not the Mouse!)

Because I know that you are all dying to know, and because I personally think that it's pretty fascinating, I wanted to give you all a quick tutorial on Hazel's MIC-KEY button.

First, I want to start out by saying that I do not know why it is called a MIC-KEY button, but I do know that there are other types of G-tubes out there, like the PEG, but the MIC-KEY is the one that Children's uses, and I have heard that it is 'better' then some of the others and easier to use.  One of the differences that I have seen is the the MIC-KEY sits pretty flat on Hazel's tummy and the tube comes out the side whereas I think that the tube for the PEG comes straight out.

Next, I want to assure you that I am not a doctor.  Or a nurse.  Or anyone having anything to do with anything medical in any professional way.  The only reason I know anything about any of this is through experience, asking questions (did I tell you that while Hazel was in the hospital Jimmy and I took this great marriage course in our church and when he was asked to write down my hobbies, he wrote 'asking questions' as one of them?  Well, he did, and I do) and reading...a lot.  Preemie book?  The one that said 'don't read this book cover to cover because it will worry you too much'?  Yeah.  I devoured that one.  That being said, anything that I say here, or anywhere actually, should never be taken as medical advice, and feel free to correct me (nicely, please!) or add to anything that I say.

Anyway, here we go:

G-tube stands for gastrostomy feeding tube, with 'gastro' indicating something having to do with the stomach, and 'stoma' meaning 'hole', so we have a tube that passes feed through a hole into the stomach.


In the pictures below, you can see a diagram of the basis of the button itself and the extension kit.  The 'balloon' looking part that is what goes on the inside of Hazel's stomach.  A tube starts right at the end of the balloon, passing through it, passing through Hazel's abdominal wall and ends with the 'button' that sits right on her skin.  The flap in the picture that is down and to the right is what closes the hole when there is no extension tube connected to it so that her stomach contents don't come out, and the little pointer looking thing pointing up and to the left is where you connect a syringe to inflate or deflate the balloon, in our case with water, that is on the inside.  The purpose of the balloon is to hold the tube and button in place both so that it doesn't come out, and so that it stays snug against the skin and doesn't leak.

This picture below is the packaging for Hazel's 'emergency' tube.  It is sterile and ready to be used in case hers comes out.  So far, we have not needed this, and I am hoping to never, ever need this.  Even though the tissue that forms the hole where the tube passes through heals much like a hole for an earring while the tube is in, it is not like an earring in that if the tube comes out, it will heal very quickly, beginning to close in a matter or 30 minutes or so, and being impassable in about 24 hours.  This is a good thing if you remove the tube because you no longer need it, but a not so good thing if it is pulled out accidentally.   This package also shows the size of the tube that Hazel has.  It is has a diameter labeled at '12 French', which I don't know why it is French, nor what that unit of measuring is, but the other size is 1cm, which indicates the length of the tube between the top of the balloon and the bottom of the button.  Which means that Hazel's abdominal wall is 1cm thick.  Now, you may think 'how can that be?  The stomach does not lie that close to the skin, so how can the tube be only 1cm long?'  Ahhh...good question!  And one that has an answer that then greatly affects the way that we are able to feed Hazel.  You see, when Hazel had her surgery, they did the surgery laproscopically by making a cut in her belly button and another in her abdomen where the button would go.  Then they pulled her stomach out to the edge of her abdominal wall and passed the tube through the hole that they made there and inflated the balloon.  That is why if the tube came out in the first 2 weeks or so, she would have needed surgery to put it back.  The stomach would have gone back to its original location in the abdominal cavity.  Now, however, the stomach is more permanently connected to the abdominal wall by the tissue that forms the hole where the tube passes.

So, how does this affect how Hazel eats?  Well, imagine that you have a tiny tummy with an opening at the top where the food goes in when it comes through the mouth.  There is a flap covering that hole that is supposed to let stuff in, but not out.  In a preemie, and many term babies, too, for that matter, that flap is very underdeveloped and immature, and so it is floppy and doesn't close well.  Now, take that tiny tummy and stretch it way off to the side and imagine what happens to the opening at the top.  Right.  It's stretched, too, which means that the floppy flap is even less effective at keeping food where it belongs in the stomach.  Add to that the extra space that the balloon is taking up in that tiny tummy, and you can imagine that we have quite the compromised stomach capacity.  That is why Hazel has a hard time nursing.  While nursing, the milk flow is fast and fills her tummy faster than she can handle it.  That is why when we hang her feeds, we have to run them over an hour, which is much longer than an average baby would usually nurse.

This is a close up of the end of the extension kit.  This is the end that we attach the feed pump to.  The white clip is a clamp that we use to clamp off the tube when it's not in use.  If you don't clamp it, then if you open one of the ports, and Hazel has anything in her stomach and she cries or kicks her feet or tightens her abdomen in any way, the contents of her stomach will come out the open port.  This can be good, if you are trying to get gas out of her tummy (she did not get a NISSIN, by the way, so she is able to burp, in case you are wondering.  A NISSIN is a procedure that tightens the top of the stomach to help control reflux but makes you not be able to burp or throw up).  If she is very gassy and can't bring up a burp, we have a very large syringe, that we take the plunger out of and attach to the open port so that her stomach contents can bubble up and with them, the gas.  When she calms again, gravity takes the contents back into her stomach.  But in any other case, you pretty much want to let what goes in, stay in.

This is the other end of the extension kit.  It snaps into the button on Hazel's tummy and locks into place (hence the 'key' part of the name?  Don't know...)

The milk that I pump is hung in this bag...

...and run through this pump.

Of course, you have to get the air out of the tubing before you can start the feed, so you can either use the 'prime' button on the machine, if you happen to have all day to wait for it, or you can squeeze the blue part of the tube where the little symbol of a drop of water is, squeeze the bag at the same time, and hope you don't squirt milk on the cat.  Just sayin'.  Things happen.

Then, the end of the tube from the feeding bag that has passed through the feeding machine is connected into the feed port of the extension kit like so,

 the machine is programmed, and off we go!

The smaller port is where we put the medication in.

So, looking for the sliver lining in this whole thing, we have two very nice benefits that come from having a G-tube.  One is that we never have to give Hazel her meds by mouth, we just push them through her tube, which is very handy when she has 4 oral meds she takes twice a day, and two, in the middle of the night, she just fusses a bit when she's hungry, and I have gotten quite adept at setting up her feeds quickly, and we both just fall asleep while they run and let the machine cut off when it's done.

Until, of course, she kicks her feet and happens to accidentally open the med port of a defective tube and we end up with a sopping wet mess of milk and stomach contents in her bed, but that doesn't happen often, thank goodness, and I have learned my lesson and I make sure to keep the tube up high and wrapped in a blanket so she can't kick at it.

And there you have it. That's how those cheeks have gotten so chubby!