Sunday, February 19, 2012

The One Who Calls The Shots...And A Recap Of Sorts


I'm guessing she will always call the shots.


I don't know if you'll remember this, but there was a time when Emily drank from a bottle.
It wasn't ever enough to give her the nourishment that she needed, but it was something.
And we were hoping to build on that something.
The thing we heard over and over again was that when Emily's heart was fixed she would have the strength to eat.

We didn't plan on the lack of blood flow to her gut causing recurring infections.
Recurring seems an understatement.
The treatment for the infection is gut rest, meaning nothing went into Emily's stomach for weeks.
And in those weeks Emily forgot how to eat...she fell out of practice...and she forgot that a bottle was the means to fulfilling her hunger...because she was never hungry.

When Emily was finally allowed formula again she failed her swallow study.
More of what she ate went into her lungs than went into her stomach...and she wasn't coughing, which was dangerous for our little lady.
The last thing we wanted was for Emily to get pneumonia.

Jason and I were frustrated, and we felt that without practice she would always fail her swallow study.

Months later when Emily finally did pass a swallow study, and we were given the green light to feed her orally, Emily had lost all interest in eating.
It's possible she lost the ability as well.

About the same time as the green light on a bottle, the nurse practitioner told me that they had stopped one of Emily's reflux medicines.  She had been on two for most of her life and the NP felt that it was redundant to give her both medications.
I was happy with the thought of going home with one less medication to give.

We had been home from Emily's latest surgery/hospital stay for about a week, and had seen glimmers of success with the bottle when Emily started throwing up.
Every. Single. Day.

Sometimes it was more than once, but it was always once.
We talked with the pediatrician, I texted one of Emily's nurses, who has become a friend, and I talked with other moms.
We did everything we could think of.
We ran her feeds over a longer period of time, we changed when we gave Emily's meds to her, we made sure the milk was always warm, we tried skipping a feed in the morning, we changed the formula we were using...we tried everything.
Still, she threw up.
And the more she threw up the more she refused a bottle.
The two are very much associated.

We finally met with a GI doctor who told us she wanted to do surgery to prevent Emily from throwing up, but only after she ran a test.    
That test was the reason for Emily's and Daddy's sleepover at the hospital a few weeks ago.
The GI doctor put a probe down Emily's nose into her esophagus, and the probe was in place for 24 hours, to test the level and severity of Emily's reflux.

The GI doctor called me a few days later and told me that the test showed that there was no sign of reflux and that she wasn't going to do the surgery.
"In fact, there is no reason Emily should even be on her reflux medicine," the doctor told me.
I was incredibly skeptical.
I've seen the results of other tests that showed damage to Em's esophagus because of reflux.
I asked the GI doctor if she was sure and she told me that she was.
I stopped the reflux medicine.
(The GI doctor also told me that she wanted to wait to do the feeding tube surgery...at least a few more months.)

Within 3 days of stopping Em's meds, our little lady was miserable.
With every feed she acted more and more uncomfortable.
Her throwing up increased and in addition, it began to hurt her.
She would cry and cry after every throw up episode.

On the fifth or sixth day I cursed the GI doctor and started the reflux meds again.
And for added measure, I started Emily back on the reflux medicine the nurse practitioner took her off of.

In the last seven days Emily has only thrown up once.
I don't know if I should be more frustrated with the NP or myself for not thinking of adding the other medicine sooner.

Or maybe I'll just be grateful that things are finally looking up.
And hope that the longer our little lady goes without the trauma of throwing up, the less averse she will be to fluid in her mouth.

Em's feeding therapist promised that Emily would eat birthday cake on her first birthday.
We've got 6 months little lady...6 months.





11 comments:

Taylor said...

I can't imagine how stressful and emotional this all is for you! She is so precious and such a blessing. I hope she continues to get well!

Ali said...

I am so sorry that you have had to go through all of that! Hopefully Emily will keep improving! Sending prayers and good luck for the next 6 months!

Sahar said...

Well, remember when they told you she might not even live? I think she is doing great for six months! ;) She'll do great in the next six!

TortugaRachel said...

If there has one thing I have learned through raising my kiddos, it is that I am their mother and my intuition regarding my children is pretty much spot on, even when others say different. Go with your gut, if YOU think she needs a med or a treatment, get it for her. If they say otherwise, ask more "they"s.

Shan said...

It is *incredibly* frustrating when Mama has the answer that a doctor doesn't. Unfortunately, it does happen, and it happens a lot more than it should. I know that my birth board buddy's solution to her daughter's vomiting was to switch her from formula to pureed foods. (Her daughter is a year older than Elimy, so I'm not advocating that... only showing that you're not alone.)

The other thing I wanted to say is how proud you ought to be for figuring this out. I can imagine that you might be thinking something along the lines of, "but I should have known right away!" To that I say, even the doctors didn't figure it out right away. In fact, they're still working on it. Way to go, mama!

Elizabeth said...

I can't believe she is six months already! She is so big! And so sweet! I love that photo!

I'm sorry that life has so many hurdles for her. She is definitely one of God's most valiant.

xo -E

Thomas & Alicia Montgomery said...

I'm also surprised that the Dr.s took her off the reflux meds when she was vomiting! I'm glad she' back on them now to help her not vomit! My little girl, 19 months old now, has a g-tube after 9months with the NG tube! The g-tube and a blenderized diet is really helping her want to eat. of course she has a totally different background than Emily, but the NG tube causes more oral aversions!! Whitney does not have a fundo/nissen and is on prevacid and bethanechol to help her not vomit. But she does sometimes if I (over feed) feed her the amt. doctors want her to have for catch up growth. Anyway, good luck and consider a g-tube!?

David G. Woolley said...

Out of the clear blue, something said, check up on Noel. I haven't been here for years. Or at least a year. What a trial you've been suffering. And that beatiful little one too. Yikes. I know this. The nurse and the doctor aren't in constanct monitoring contact. They don't see the reaction of the patient to meds, etc. I know I reduced my mom's med in half despite all the adivice to the contrary. And I took her off her BP meds and monitored her blood pressure everyday. Months later the doctor tells me that everything is in perfect order. Then I broke the news to him. He freaked out. Then, once he recovered from the shock, told me to keep doing what I was doing. You're your best nurse. Keep an eye on that girl. And we'll all keep praying for all three of you!

Alyson said...

Noelle, I've been reading your blog for years. I want you to know that as a reader, I think you should be able to write about anything you'd like; whether it's stressful, sad, or frustrating. I think I speak for a lot of your readers when I say that we love to hear what's going on, no matter what.

Emily is SUCH a strong little girl, and she's got such a support system of sweet parents and all of us readers as well.

We'll always be here, Noelle! If we can't do anything else, this blog offers a listening ear at the very least.

Bridget said...

Gah, I can only imagine how frustrating this is. Kids definitely have their own personalities and preferences, and on top of everything she has had to deal with, I guess she had decided to be stubborn about something, ha ha.

Boston STILL to this day will not eat with utensils, and it took until he was nearly 2 years old to get him to drink out of a sippy cup. He laughed at bottles since the day he was born, and baby food? We probably wasted $100s trying to get him to eat that stuff. He is still really picky. I thought I was a big failure as a mom in that department until we had Tagg (who loves to eat anything and everything and even uses utensils).
Kids are funny. What do you do?
I hope she starts to come around soon!
XO

Of One Heart said...

You'll probably be the best GI doctor in town before you know it. Poor Em. :(