Tag Archives | feeding clinic

1. more. day

I am a woman at her breaking point.  I am tense, I am on the edge.

Thank you Auntie Lisa for Dora!

Thank you Auntie Lisa for Dora!

 

** WARNING** Potty mouth ahead.

With 2 days left, I am thrilled with Gabi’s progress.  We have learned so much and I feel like it’s going to be really hard on the outside but I am confident that she will continue to do well.

Because there are so many variables with feeding issues, I talked to our psychologist and got some clarification about how to tackle those variables. I wish she would have explained this to me from the beginning, but better late than never!

Our first goal is to wean from the g-tube so that means incresaing the volume of food she will take orally. Then we can slowly start to give her back control to feed herself. Then we will work on her chewing skills to get her back to eating whole foods.

So we go home with me spoon feeding Gabi and offering her controled measured drinks in a medicine cup.  It is timed for 25 minutes and I give her a bite, bite, then a drink. It is very controled.  All the food is blended up right now.  Ideally, this will be 4 times a day.  With school, I am not sure we can do 4 times.. it may be just 3 times a day. I have to measure and weigh the specific foods that we make for her and record every gram of food and drink and then send it to the dietician.  We will continue with outpatient therapy 2 times a week.

This is working but I am so done with the strict rules and hippa laws and ridiculous protocols that sometimes don’t even make logical sense, but the rules are followed anyway because “that’s just the way things are.”

Ms. S, one of our feeders, asked me if I was ok yesterday after her dinner hour. She said I seemed anxious.  I wanted to punch her in the face but also cry in her arms.  I told her I was having a hard time but I am ok.

But this is what I wanted to say:

“Of course I’m fucking anxious. I’m sitting in a 4×4 room with no windows spoon feeding my 5 ½ year old daughter that has half a heart and I have to say stupid shit like “take your bite” and “take your drink” with no emotion.  It’s not fair and I’m so fucking tired! And you’re all sitting outside this room taking notes on my parenting! I feel judged and I disagree with a lot of what is done here. But we have tried every other fuckiing option to get her to eat so I have no where else to turn! I’m stuck and I feel like you know that.  So you all have that power over me and I hate it. So, feel free to tell me that I seem anxious because I fucking am anxious and I am scared and I am tired and I didn’t choose this life and I don’t want to do it anymore.. but guess what?  I don’t have a choice!  So you go on home to your family tonight and I’ll see if I’m lucky enough that I can facetime with my family, get no sleep on the airmattress that lays on the nasty floor tile. Then I  will listen to my daughter breathing next to me, will praise God that she is still alive and then we can wake up and do this all again tomorrow with you fucking people!”

Ya, I would say I’m anxious.

Tonight they gave Gabi blended green beans to try. Blended up unsalted green beans.  She gagged. I tried again. She gagged.  I would gag too. She took the blended mac n cheese and her choc milk just fine.  So, I skipped the nasty green beans because that is disgusting. The feeder opened the door and said, you cannot skip foods.  I said, she doesn’t like them. It didn’t matter. I couldn’t skip foods.  Well, you know what?  I wouldn’t eat that shit either.  What 5 year old kid is going to eat that?  I skipped it anyway.  Please- kick me out of here! I’ve had it.

Max is sick at home and Ethan is being a kick ass husband and dad but he doesn’t feel like it.

I need a very large, ice cold, very alcoholic drink.

You know what the worst part is?  I read an email from our youth group leader ( who is great). Her email was a reminder for the kids to bring their bible and rosaries tonight.  I literally rolled my eyes and closed my computer.  A 13 year old girl here took a turn for the worse and is in terrible pain again from her cancer.  A paralyzed 2 year old girl here got emergency transported back to childrens because her cancer came back and it is more aggressive than they thought. She has a 25% chance of survival.  There is so much here. So much.

I can’t find God today. I shouldn’t be looking because he’s probably there waiting for me but I don’t even want Him to find me. I just want Him to leave me alone.

Science night in the playroom!

Science night in the playroom with our new dear friend :)

1. more. day.

Much love,
Teri

 

 

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Day 10.

This is not getting easier. In fact, this is getting more difficult by the day. I can’t be having another pity party.. it’s too soon!

This is in her speech session You can see the vital stim electrodes on her neck.

This is in her speech session You can see the vital stim electrodes on her neck.

I have so much confusion in my head right now that I can’t even sort it out tonight. The meeting today helped me to sort out a few of the variables involved but the list is just so long…

  • Calories
  • Getting enough fluid to avoid dehydration
  • aspiration
  • vital stim therapy
  • removing tape- and the trauma related to that
  • thickening her liquids
  • tantrums
  • behaviors
  • tough love discipline
  • blended foods
  • gagging
  • G-tube feeds
  • Core muscle strength
  • control
  • patience

These are just the variables I can think of that are all a balancing act and there is so much pressure to get the most out of these 30 days. And I guess my expecations are not crushed but just so different than what I planned on. I should never use the word “plan” anymore. I hear chuckling.

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I thought going through this would make our lives easier when we go home
I thought going through this Gabi and I would bond and grow closer and read and snuggle
I thought going through this we’d conquer her chewing and swallowing
I thought going through this we’d simplify things

Instead, we are not even working on chewing. They are blending up her foods
Instead, Gabi is protesting everything and I am having to balance the positive and negative reinforcements more than I have ever had to with her
Instead my life coming out of this will be much more challenging with blending all of her foods and thickening all of her liquids
Instead of hoping to get off the Gtube, I am wishing we could just use that thing for the rest of her life.
Instead of my hopes for Gabi to have an easier days ahead, she will have to work harder than ever
Instead of simplifying things, they are just getting more complicated… but in a good informational way.

I don’t want to face another day like today. I just want to eat an ice cream sundae with hot fudge and pack up and go home.

But I’m pretty sure that’s not what’s going to happen.  Ethan and I are totally dependent on God’s love and grace right now. It’s liberating yet also terrifying.

Much love,
Teri

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Day 8

I never know how God will reveal himself. Sometimes I struggle to find Him. But today He made himself known.  My pity party is over.

Swallow study complete.

Brave Gabi sat in a boosted up chair with straps and the radiologist and the SLP positioned her and the camera at the IMG_7878 (1)perfect angle so the video was recording her mouth down to her stomach.  They gave Gabi 4 types of liquids to drink.  From thin as water to thick as pudding.  All mixed with barium.

Good news- she did great behaviorily.
Bad news- Preliminary results were not good. She is aspirating thin liquids. Both the doc and the SLP wanted to review the images and then give me a full result but, of course, the machines were down.  We will get full results tomorrow.

But according to SLP, she is aspirating thin liquids but coughing to get enough of the liquid out of the airway back to the esophagus.  It is her self-protection. She never coughed  enough for us to be alarmed.  And of course, I feel terrible that we didn’t know this was happennig. Looking back, yes she did cough but just a small, almost kind of habitual cough. Oh the ugly guilt and the bitter resentment set in today. But I was also so grateful that the SLP ordered this test and we now have this information. We can now move forward with the best possible way to help our little girl.

Treatment is to thicken all the liquids with a thickening agent.  It turns the liquid into a nectar type of thickness. She might also start a new treatment called Vital Stim Therapy.FullSizeRender

The VitalStim® Therapy System involves the administration of small, electrical impulses to the swallowing muscles in the throat through electrodes attached to the skin overlaying the musculature.

And now we get to add a pulmonologist to our list of specialists! Super psyched about that.

Her tantrums are still happening for every single therapy. But I am not backing down.  She is testing me and I cannot give in to this.  One of my most inspirational friends who is  one of the best parents I know and happens to be a nurse agrees with me to not give in.

It was a very trying day.  We still don’t have answers for our goals for the program..One of those days that you wonder where God is.

I’ll tell you where I found Him. Friends from long ago, friends for life and new friends are reaching out to me because of this blog and my openness. It’s not easy for me to open up like this.  I feel quite silly but it is my therapy and I also don’t want to ever forget these moments. But because I open up, we have received so many blessings.  I am so thankful for the genuine friendships that I have… that is where God is.

Science experiments in the playroom tonight

Science experiments in the playroom tonight

Often times, here, I just want to sit in our room and read and sit with Gabi by myself.  But I know that every person here, the staff and the patients here are an opportunity.

An opportunity for love.

We went for our thousandth walk through the hallways tonight and met a new girl here.

13 years old. brain cancer. chemo. brain surgery.  wheelchair. lost all function on her right side. And SHE told Gabi how brave she thought she was.  There’s God again. Speaking through a 13 year old girl.

And you know where else I find God? My husband.  My teammate. The one I don’t thank enough. The one that drives me crazy but the one I can’t live without.  The one that I take for granted.

Ya, I’m over my pity party.

Much love,
Teri

 

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Day 6 & 7- Pitee Partee

Rough day. rough weekend. Kinda having a pity party…IMG_7870

But I’m not overlooking the fact that we are one week down!

I got to go home on Saturday! It was so great to see the kids and sleep in my own bed.  WE try and cherish every moment together but I also had to go grocery shopping to stock up for the week, run errands for pet food, run to redbox, do laundry.. etc.

It’s just temporary…

Frustrations here at hosptal.  The hospital staff changes on the weekend. We were in such a good groove. She was kicking butt and then the weekend hit. she did ok, but I don’t think the feeder did as good as job as the FT staff.  SHe was down to 17.4 kilos this morning. Which doesn’t seem like much of a loss compared to 17.7 on Fri but like i said, it is all about the numbers.

Gabi continues to cry and begs me not to go into the feedings. “I’m not hungry.” “I don’t want to eat.” “don’t make me go.” It’s hard but I can handle that behavior because she’s fine after a few minutes with the therapists. But today at her scheduled snack time, for the first time, she refused to eat.  She wouldn’t open her mouth for Ms. Sheila.  And the fits before the feedings and the therapies are getting worse.  She is testing me and testing the therapists. I’m sure she is sick of being here, sick of the food, sick of the work. It’s a fine line for me. A fine line to cross between comforting her enough but also not enabling this behavior.

And I’m struggling. She refused to eat in her dinner feeding also. And now she has lost about 400 calories. And it’s all about the numbers. I measure her urine output and monitor her poop schedule too. I tried to talk with the psychologist to see how what I am supposed to do.  But of course, the psychologist already left for the day.  Ms. Sheila, her feeding tech, told me this is totally normal. But I don’t want anything to slow down her progress! And I feel like a caged animal in a prison system.  Sounds like an exaggeration but I shouldn’t have to request to meet with a member of the team and then have them not be here!

This is all getting very complicated and I just need clarification.  It’s not just about her eating, it’s about the behavior and it’s about her extensive medical history. Today in speech, the therapist noticed some crackling in her lungs and heavier breathing.  She wanted to get another swallow study last week but then decided not to.

But today a swallow study was ordered.

We head to the main hospital tomorrow to check for signs of aspiration. If she is aspirating, that changes everything.  But I do not think she is.  Her last swallow study was 4 years ago and there were no signs of aspiration. The results just showed a paralyzed vocal chord. I know 4 years is a long time but  I think we would have seen some signs if there is fluid going into her lungs. But it will be good to know for sure.

She is eating a lot of blended foods… including a delicious blended beef stew, blended ravioli, blended mac n cheese, yogurt and still whole milk mixed with Carnation Instant Breakfast. She is doing well with those. But I guess I’m just overwhelmed and confused with what the overall goal is.  I am happy with what she has already accomplished which is getting off the nightime pump feeds.  But what now? I could head home now and feel like this has been a great success but we still have 3 weeks. I hope to get some answers tomorrow.

IMG_7864The kids were off school and it was hard not spending time with them especially on this beautiful Texas day.  Gabi and I did get to get out in the courtyard and soak in some sun and we went for a walk around the block so we are getting out.

Like I said, pity party.

It’s temporary.

There were a lot of siblings here on this MLK holiday, so the playroom was hopping.  But it made me miss my family even more. They weren’t able to come today.

Just temporary.

Pity party.

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There is a mother here that also has 5 children. She is here with her youngest child, a boy at 10.5 months. They thought he just had some sensory issues and eating issues. He has an ng tube and got here the same day we did. A week ago today.  He was literally just diagnosed with autisim this afternoon. She is devastated.  She doesn’t know what her son’s future will be, or what her future will be. I could offer nothing to her but a listening ear.  We talked about our faith and I know she will be ok.

Everyone has something they are struggling with.

Thanks for reading. Thanks for the prayers, the texts, the emails, the gifts, the dinners, the babysitting, the friendship and the Novenas.

Kids with Grandma Colleen. We are forever grateful for her flying in to help us...

Kids with Grandma Colleen. We are forever grateful for her flying in to help us…

My family!

My family!

Much Much Love,

Teri

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Day 5- quick update

Gabi  was up to 17.7 kilos today! That is up 500 grams!  That is more than a pound she has gained since admission on Monday!

Thursday she ate 730 calories by mouth!!!  Unbelievable!

The dietician has decreased her g-tube feeds by 50%. For the first time ever, Gabi does not have a continuous overnight feed with the pump!  I can actually get some sleep without that thing pumping away. Because, it’s always about me, ya know :) I still can’t even believe this.

And being fed continuously overnight is so unnatural that it takes Gabi a few hours to feel good in the morning. She is always gaggy, burpy and just doesn’t feel well. I can’t wait to see how she is tomorrow morning.

So they want her to get 3 bolus feeds of 150 ml each 3 times a day. One at noon, one at 6 and the last at 10pm. She also needs some additional water boluses, but that is easy.

We just need her to keep this up! You go girl. I am so proud of you. Praise God!

We’re pulling the mommy-daddy switch tomorrow… I get to head home and see my other babies!

Thanks for all the prayers, they are certainly working! Please pray for all the families here…
Much Love

Teri

 

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Day 3 and 4: Feeling hopeful

IMG_783926 more days to go! And we got outside today!  Wahoo.

Gabi is incredible.She is just blowing me away with her determination and hardwork. She makes me want to be a better mom and person.

Every morning we receive her schedule that consists of 7 and soon to be 8 therapies. And, not surprisingly, they all love her.

 

 

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She gets Speech, PT, OT, 4 meals a day and starting on Monday she will be receiving her school classwork.

speech-Her therapist is great. She has finally given me a good explanation as to why Gabi’s checks are so chubby and why she can’t swallow! Her cheeks are thick, very low sensory and very low muscle tone. She needs a lot of input to trigger those muscles to make them work.  Because she never had a bottle and never ate anything her first year of life, her muscles never got used.  Her awareness of those muscles isn’t there. So, speech will do a lot of stretching her cheeks and a lot of sensory input in her mouth. She has Gabi doing strength exercises that are very tiring.  I am watching closely to learn how to do this at home.

This is through the 2 way mirror

This is through the 2 way mirror

OT therapist is working on general strength and balance. She has Gabi doing sit ups and confronting her  gravitational fear and anxiety. She is pushing Gabi hard. She is also working on brushing her teeth and sensory input.

PT therapist is working on  jumping, balance, general strenth, and Gabi’s favorite the bike with pedddles and hand peddles.

feeding therapist- this is definitly the toughest for Gabi.  She is told to eat, chew and swallow with little sympathy and little emotion. The therapist is tough and pushes her to drink and eat. And Gabi works so hard with her!

school time- We had to unenroll Gabi from Bennett and enroll her in the local Dallas ISD so she can be a part of the hospital bound program, There is a classroom teacher that works with all the kids of school age here. This will start Monday. yay!

We had our first Huddle today.  That is a meeting with her entire team including-

Psychologist
Social Worker
Clinic Manager
STE(speech)
PT
Dietician
GI doc

The team definitely all agreed that she is doing great.  We don’t have that much data to work with so they won’t make any big decisions until tomorrow even though I asked.

Her weight schedule is MWF. Monday her weight was 17.1 kilos. Wed. she was up to 17.2 kilos. That’s up 100 grams.

They meticulously count ever calorie that she gets.

Tues- She ate 288 calories orally and also got 850 calories through her G-tube feeds of pediasure 1.5
Wed. She ate 304 calories orally and got he same 850 from g-tube
They’ll have her calculations for calories and a new weight tomorrow morning. If her weight is up again, they will start to decrease those g-tube feeds. I am pushing for aggressive treatment here.

Unfortunately, I know how this all works. It’s ALWAYS about the numbers.  They tend to focus too much on her getting the exact amount of calories she needs and its frustrating.  We all know kids have days where they just don’t eat and they are fine.  But they did remind me that because Gabi’s heart works so hard, she burns a lot more calories than it looks.

I still want them to be super aggressive and I think it would be good for her to feel hunger and she just might be more motivated to eat! Makes sense, right? We’ll see it they listen to me.

Pray for a big weight tomorrow morning! And pray for a not big weight for me!  I  seem to have the opposite problem of Gabi. lol.

Child Life is awesome here. They plan activities for the kids like craft time, bingo nights, and playdough time.

This is a house fort that Child Life built in the playroom

This is a house fort that Child Life built in the playroom

My deep thought of the day is- as I watch Gabi go into her feedings and she is crying for me and she doesn’t want to go, it hurts me.. a lot. Of course, any mother knows this heartbreaking separation anxiety. When Gabi’s PT made Gabi  climb one more rung of the ladder even though her muscles were so tired and she was terrified., I watched and didn;t rescue her. I knew she could do it!

I look around at all the parents here with their children with so many medical and emotional issues.  So much sacrifice here. And SO much love here. But the love is not a heartwarming one.

This love is not a romantic feel good kind of love.

This love is not nice.

This love can be ugly and painful.  This love is telling a child to learn a skill with a complete stranger that everyone else seems to be able to do without a problem and they do it even though they are so afraid and don’t understand.

This love is forcing a child to take an awful medication and then you catch the vomit when it comes up or when it comes out their nose and you know your child has aspirated once again.

This love is making sure your toddler daughter doesn’t trip over her tracheotomoy tube when she is toddling around.

This love is holding your adult sized teenage son down while he is having a childish tantrum that he can’t control and possibly putting yourself in danger.

And this love is protecting that child that everyone tries not to stare at but feels sorry for and might give a pitying smile.

This kind of love is bringing your child to therapies when you are so tired you can’t see straight.

This kind of love is advocating for the ones that can’t advocate for themselves.

This kind of love is unfair but this kind of love…..

….. is God’s favorite kind of love.

I am so blessed to be witnessing love like this.  Love that almost breaks a person.

It’s amazing.

Again, thank you all for your support!  Gabi had a good day!

Much love this Thursday evening,
Teri

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Day 1 and 2. Let’s get this party started!

The lamb she received from the chaplain here.  She named it "lamby." seriously.

The lamb she received from the chaplain here. She named it “lamby.” seriously.

It’s been a whirlwind.  Literally a tornado of a few days.

Gabi is confused but doing well. This is still exciting and a novelty so I am just appreciating and learning from her positive attitude. She is working harder than I thought she would with her feed times and I am just so proud of her.

So Our Children’s House at  Baylor homes children with a variety of issues and I have already met some inspiring families. But it truly is a hospital, with nurses that are making me crazy insisting on checking vitals every few hours and checking her tube site a few times a day.  The room is a hospital room filled with oxygen tubes and emergency call buttons and bathrooms with awful railings and tile.  But we are making the best of it!

Our room- before

Our room- before

Thanks to my friend, Rachel :) and Target, we managed to make our room pretty comfy.

It’s a Frozen theme… and I have to admit I am finally getting a little sick of those 2 sisters.

There is a cute playroom where Child Life has daily activities and 3 bikes that Gabi loves. We have peddled those bikes up and down these hallways so many times already.  I’m trying really hard to get over myself but the boredom is destroying more brain cells and I can’t afford to loose any more!

 

 

My half of the room- after

My half of the room- after

 

Gabi's comfy corner

Gabi’s comfy corner

 

playroom

playroom

Riding the bike

Riding the bike

Riding the bike again

Riding the bike again

outside park- it has a pretty view of downtown Dallas

outside park- it has a pretty view of downtown Dallas

 

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Now that we kinda know what’s going on, Gabi gets a schedule everyday.  It’s busy but there is A LOT of downtime.  Tomorrow they should start her classroom time, so she’ll be getting some schooltime with the teacher here.  woot woot!

So she has 4 feedings throughout the day and she is such an unbelievable trooper.  She is working so hard! She knows that if she tries her best and starts to swallow all her food, we will take that tube out eventually, so she is motivated!

She did notice and announce today that all the kids have tubes here!  Not all of them have G-tubes, but there are lots of tubes- NG tubes, oxygen tubing, trach tubes… so cute and so heartbreaking.

 

 

 

My thought of the day is this- I am such in denial being here. Through the days preparing for this, I have gone through anger, feeling the unfairness, sad, anxious, but still hopeful.   All I can control right now is my attitude. My reactions to Gabi, my responses to the other families here, the staff, and my responses to all the support we are receiving from friends and family. It’s amazing the power we have.  The power that I have to affect so many people. The power I have to make or break my daughter’s success. The power to lift another parent up here, the power to simply appreciate someone’s help.

There is a nursing tech here that went out of her way to help us when we first arrived here. The room we were assigned to initially was AWFUL!  It was tiny, dark, and had grubby curtains for a bathroom door. I looked at Ethan and almost collapsed in his arms in pure despair.  And when this tech, Barbara first came into the room, she wheeled in the vitals cart with the blood pressure machine and thermometer. Gabi instantly grabbed me in fear and broke down in terror.  Barbara had to do her job but she understood and told us she would explain to the doctor what was going on.  And I know doctors, I know the doc would be insisting for those numbers. Ethan then mentioned to her that the rooms that we saw when given the tour of the hospital did not look like this. He gently asked her if there were other rooms available.  She could have easily dismissed us. She could have said that is not her job.  But she didn’t.  She found us another room down the hall and told the nurse that we’d be better off in the bigger room. Pure grace.

Later that first day, I saw her again. I was so exhausted, so down and consumed with what felt like starting my prison sentence. But I wanted to tell her how much I appreciated her going out of her way for us. I simply said with a touch of her arm, “thank you for your kindness today ” And she said “oh girlfriend, come here and gimme a hug.”  Since then she stops in my room to make sure we are ok. Turns out she had worked 4  12 hour shifts in a row and she was probably as exhausted as I was.

I have to remember that I have the ability to give Gabi and others the same grace. The grace that God expects us to bestow onto others.  The little things that can change a person’s day and affect their whole life. I have trouble, although I have gotten a lot better, about asking for help. Humbling myself to let go of the control.  When others are helping us SO much with dinners and babysitting and reaching out in friendship, my response should be and will be to pay that grace forward…even if it’s as simple as giving Gabi an extra dose patience and a little bit more of my undivided attention or being available to another parent here for encouragement even when I feel like I have nothing left to give.

But I will not lie, this totally sucks.

This is how hard Gabi is working.  I love her strength.  I took these pictures during 2 of her feeding sessions through the observation area. It’s a 2 way mirror so she cannot see me.

Speech feeding

Speech feeding

Feeding time with Ms. Sheila

Feeding time with Ms. Sheila

 

Ethan and his mom are holding down team 2 at home.  Kids are doing great despite their meltdowns before I left. That makes me so happy :)

Thank you for all your support. The phone calls, emails, texts, dinners, care packages, flights to come babysit… it’s all amazing and nothing is overlooked!

Much love,
Teri

 

 

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