We got a full 7 days without it, but then Rae's GI called.
I had sent her (GI's) nurse an email with her weight, the video of her walking and expressed my concern about how much she's sleeping.
We talked about the regression and her exhaustion and she was really not happy with the 5 ounce loss in 5 days. She was shocked at how quickly she regressed, she said over and over.
Again, we were proposed 2 options.
Option 1) NG tube goes in, we get her on dairy, switch her to a diary based formula, and in 6 months maybe try to wean her off the NG again. But it will definitely be 6 months before the tube trial is done again.
Or
Option 2) Do the g tube.
I knew that. I knew that was the deal, that if she didn't do well we would be considering the g tube.
She asked me what I wanted to do and I just fought back tears. I have no idea what I want to do. I tried to make a choice last week and I clearly chose the wrong one and Rae had to deal with the consequences. I expressed that to her, my doubt and worries about not doing what's comfortable to me and Rae gets the backlash of it.
I basically asked her to make the choice for me.
"What would YOU do if this was your daughter?"
She has this accent when she speaks, it's not quite British, but I can't put a finger on what it is. Her voice is always calm and sweet even when she says things I don't want to hear.
"I'd say I'm about 99% sure if we do the NG, she'll end up on a g tube either way at some point in the next 6 months. So if you were thinking g tube, I would do it."
Crap.
So the next 20 minutes was scheduling and she was asking me to make decisions about buttons (What?) and surgery types (There's different kinds?) and if I wanted her to do the surgery or someone else (Her, duh.) and talking about rare complications (You aren't making this any easier.) and then about how simple the surgery was (Should have lead with this one.) and about the hospital stay (Again, ugh.) and the procedures she has to do beforehand (I'm supposed to get a 15 month old to drink barium? Yeah, okay.) and so on.
June 17 is her surgery date.
I put her NG back in Wednesday night and prayed it was one of the last times I would have to do the burrito wrap-sit-tube placement routine.
In my mind, I am 100% sure this is the right choice. It's obviously going to be more long term than we initially thought. It's obviously medically necessary, as her GI, both peds, her neuro, the in home nurse who visits us weekly, and her geneticist have all been encouraging me to think about this decision for months now. It's obviously helping her to have the extra nutrition. It seems so obviously the right choice.
But it sucks.
Big time.
And making this decision feels like I swallowed a brick and then had a suitcase full of wine bottles laid on my chest (If this actually happened, it wouldn't be so bad. Mmmm, wine.)
It feels awful.
I feel awful.
I ugly cried pretty much the past 2 days every hour on the hour.
I guess I'm just sad because it's more "permanent". Yes, it can be taken out whenever she no longer needs it. But there will be a scar when/if they do. And I worry about preschool. And it can't be taken out whenever I feel like it, with the NG. It's intimidating learning all this medical stuff that I have to do alone. And it's intimidating for the people around us, or the childcare workers at church, or her little baby friends who don't understand that, no, you can't pull that yellow tube on her face. And now it'll be worrying about her falling on her belly and hurting herself. The recovery is going to suck. What if she's in a lot of pain? And UGH the hospital. I hated being at the hospital when she had the NG placed. That was seriously terrible. Big S couldn't be there, and I was alone with Rae in her torture chamber looking hospital crib.
It's overwhelming.
I'm trying to stay off Google.
Big S and I spent most of Wednesday looking at the different types of g tubes to figure out what the heck Dr. Hourigan (GI) was talking about. But we both recognize, we're blessed. Rae does not look nearly as sickly as some children.
But to stay off Google means I'm writing and rewriting and rechecking the list for the hospital after forgetting half my stuff last time (maybe I should just pack that suitcase full of wine that's on my chest.) and attempting to plan as many play dates and girl's nights as possible to keep myself busy and distracted until the 17th.
And I'm eating lots of ice cream.
I also find it therapeutic to open 6-7 windows on the computer, fill up my "cart" with like, $2,000 worth of clothes and things I would never ever need, and then not buy them. I would highly recommend this method of therapy.
But every day, I'm truly greeted with the peace that this IS God's plan. I have absolutely no clue why or when it will all make sense, but it will.
It's right there on my wrist. It's my daily reminder.
"God is within her, she will not fall."
She has this accent when she speaks, it's not quite British, but I can't put a finger on what it is. Her voice is always calm and sweet even when she says things I don't want to hear.
"I'd say I'm about 99% sure if we do the NG, she'll end up on a g tube either way at some point in the next 6 months. So if you were thinking g tube, I would do it."
Crap.
So the next 20 minutes was scheduling and she was asking me to make decisions about buttons (What?) and surgery types (There's different kinds?) and if I wanted her to do the surgery or someone else (Her, duh.) and talking about rare complications (You aren't making this any easier.) and then about how simple the surgery was (Should have lead with this one.) and about the hospital stay (Again, ugh.) and the procedures she has to do beforehand (I'm supposed to get a 15 month old to drink barium? Yeah, okay.) and so on.
June 17 is her surgery date.
I put her NG back in Wednesday night and prayed it was one of the last times I would have to do the burrito wrap-sit-tube placement routine.
In my mind, I am 100% sure this is the right choice. It's obviously going to be more long term than we initially thought. It's obviously medically necessary, as her GI, both peds, her neuro, the in home nurse who visits us weekly, and her geneticist have all been encouraging me to think about this decision for months now. It's obviously helping her to have the extra nutrition. It seems so obviously the right choice.
But it sucks.
Big time.
And making this decision feels like I swallowed a brick and then had a suitcase full of wine bottles laid on my chest (If this actually happened, it wouldn't be so bad. Mmmm, wine.)
It feels awful.
I feel awful.
I ugly cried pretty much the past 2 days every hour on the hour.
I guess I'm just sad because it's more "permanent". Yes, it can be taken out whenever she no longer needs it. But there will be a scar when/if they do. And I worry about preschool. And it can't be taken out whenever I feel like it, with the NG. It's intimidating learning all this medical stuff that I have to do alone. And it's intimidating for the people around us, or the childcare workers at church, or her little baby friends who don't understand that, no, you can't pull that yellow tube on her face. And now it'll be worrying about her falling on her belly and hurting herself. The recovery is going to suck. What if she's in a lot of pain? And UGH the hospital. I hated being at the hospital when she had the NG placed. That was seriously terrible. Big S couldn't be there, and I was alone with Rae in her torture chamber looking hospital crib.
It's overwhelming.
I'm trying to stay off Google.
Big S and I spent most of Wednesday looking at the different types of g tubes to figure out what the heck Dr. Hourigan (GI) was talking about. But we both recognize, we're blessed. Rae does not look nearly as sickly as some children.
But to stay off Google means I'm writing and rewriting and rechecking the list for the hospital after forgetting half my stuff last time (maybe I should just pack that suitcase full of wine that's on my chest.) and attempting to plan as many play dates and girl's nights as possible to keep myself busy and distracted until the 17th.
And I'm eating lots of ice cream.
I also find it therapeutic to open 6-7 windows on the computer, fill up my "cart" with like, $2,000 worth of clothes and things I would never ever need, and then not buy them. I would highly recommend this method of therapy.
But every day, I'm truly greeted with the peace that this IS God's plan. I have absolutely no clue why or when it will all make sense, but it will.
It's right there on my wrist. It's my daily reminder.
"God is within her, she will not fall."
M
ReplyDeleteIsaiah 41:10
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
Jeremiah 29:11
For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
Saying prayers for all of you Melissa. XOXO
This comment has been removed by the author.
ReplyDeleteA suggestion for the barium....if she has a cup she likes to drink out of take it! They may let you use it during the barium swallow/upper gi/ small bowel series it tends to help...most little kids think the barium is like milk and they're starving from being npo before the procedure so they drink the barium no problem.....adding choclate syrup helps or koolaid powder too it doesnt affect the test as long as the radiologist and her doctors are ok with it....keep fighting for answers!! My thoughts and prayers are with you and your family.
ReplyDeleteHi--a friend sent me to your blog. I just wanted to say-- your daughter is precious! I will be definitely praying for her and you guys. I also wanted to say that I am a pediatric PT and I work with a little boy who was not growing well/not gaining weight(also for unknown reasons). He had an NG tube for a long time, but he was still not improving. They placed a G tube and he has done so well with it! He is gaining weight and his gross motor skills are improving as well. Oh and they knew that struggled with reflux but didn't think it was bad... did a 24 hour monitor and it ended up revealing that he has horrendous reflux. Not sure if your daughter has had this test or if it is relevant but I thought I'd pass on the info.
ReplyDeleteAnd I know this comment is getting so very loooong :) but I would also recommend looking into maybe getting a consult from a alternative/holistic doctor.
Prayers and hugs!