Tag Archives | feeding

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It’s been 70 days since we got discharged.  We came home and followed the system exactly like they told us.IMG_8419

A strict 25 minutes with me having complete control. I said “take your bite, Gabi” and she did it, though reluctantly. We followed the pattern of 2 bites and a drink… over and over and over.  Because of school, we decided to only do 3 meals a day.  It was hard. It was exhausting. My feeding arm was sore.  I had knots in my back.  But it was working.

When I say, it was working, I don’t mean she cooperated 100% of the time.  I don’t even mean she cooperated 75% of the time. But I held my ground. I maintained control and Gabi was keeping her weight up.

My other children didn’t understand. They tried to help. They wanted to help and they felt conflicted.  They grew impatient with her and with our methods.  They saw her crying and gagging and then me ignoring the behavior.  I think their hearts were with Gabi.  And I think they were right.

About a month of being home, Gabi expressed an interest in holding the spoon herself and wanted to take the bite all by herself.  Of course, I let her! Isn’t that, as parents, what we strive for? independence?  I say yes. So, I let her.  She found a way to gain some control.  Which I was ok with.

Sounds great, right?  Well, she would take the spoon, stir the food, stir it again, scoop some blended ravioli onto the spoon and then shake it off, stir it up again, scoop again and then scrape some off.  After I prompted her several times to take her bite, the spoon would be lifted as if in ultra slow motion and finally reach her mouth. The spoon would sit near her lips for a slight moment and then she would finally take the small bite she was asked to do. It took every last bit of my patience.  How can you love and sympathize with a person so much but also want to strangle them at the same time!  There is no manual for this.

I have since consulted with the outpatient psychologist and her 2 feeding therapists and they wanted me to take back all control and go back to the methods of inpatient.  They said she is not ready for independent eating. Her private OT is working on the coordination of lifting a spoon to her mouth. We are still going to 7 therapy appts a week.

After another month of tears and frustration, we are coming up with our own plan to instill independence, confidence and have Gabi enjoy eating.  We are certainly not perfect and the inpatient clinic did teach us so much. We are forever grateful. But it’s time for our own system. We are doing sticker charts, working on chewing and independent eating.  She lost about a pound and a half but the doctors are OK with this. Gabi has turned into a little bit of a drama queen and I don’t do well with that. But we are working together and I have complete confidence that Gabi will eat and get off that G-tube.

Max had to have a gown too. lol

Max had to have a gown too. lol

Cardiology Appt

Wed 4/15 Gabi had a cardiology appt at Chidlren’s Medical Center in Dallas. I have to say I LOVE OUR NEW Cardiologist!  He is just so amazing.  Gabi had an ECHO, an ECG, labs and an exam.  All looks good for the moment.  We discussed closing the fenestration in her heart but since she is doing OK, he doesn’t want to mess with anything.  We discussed her future and signs of heart failure. That is always an uplifting conversation.

My biggest struggle right now is trying to treat Gabi like a normal child.  Her IEP (ARD) meeting is coming up on May 14th and I know the school district is going to tell me that she is doing so great and yes, I agree, she is doing so great.  But I struggle with that.  Are they trying to build her up so that they can get out of helping her?

Gabi won an award for perseverance at school :)

Gabi won an award for perseverance at school :)

She cannot keep up with her peers, she is no way age appropriate in any subjects or any areas.  But sometimes I feel like all I see is her weaknesses. I don’t want to just see her medical issues.  The way I watch my other children is so very different.  I love when Marissa is jumping on the trampoline with her friends and I supervise with loving eyes. Her laughter makes my heart sing.  I watch Ethan and his friends take off on their scooters down the street. I feel joy for him and I worry, of course, but not because he can’t handle himself. As I help Thomas with his science experiements, I am in awe of his knowledge and his desire to learn more.  I look at his beautiful face and his physique and smile.  I gaze at Max and smile while he is jumping and playing with his friends and there is no greater joy when he jumps into my arms. Gabi can’t jump into my arms. Our physical affection is different.

And when I watch her, I watch that she doesn’t get knocked over by her friend or that she isn’t turning too blue, or that she can make it down the curb on her own.  I watch her from across the room when she drinks her milk waiting for signs of aspiration.  I see medical needs, I see safety concerns, I see a winded Gabi that needs a rest. I try and look at her in a loving gaze and I try to not see the scars but sometimes all I do see is the work it takes to be her parent.  I am happy to do all the work. I really am.  But sometimes, it’s just lonely.IMG_8341

I want to see her strength with no weakness… because there is so. much. strength. I want to see her courage with no drama … because there is so. much. courage. I guess without the weakness and without the dramatic struggle, there would be no triumph. And she is so happy. Her smile is all I shall need.

Today I pray for Gabi. Today I pray for marriages. Today I pray for all young people that are being bullied. Today I pray for my children.  Today I pray for my husband and all husbands and their jobs. Today I pray for teachers.

I have so much hope, so much joy.  I hope you all do to!

With much love,
Teri

Happy Easter 2015

Happy Easter 2015

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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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January 12th

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It's almost Christmas!

It’s almost Christmas!

 

 

We decided to postpone the feeding clinic until January for many reasons.  I wanted to get it over with but I know it’s all in God’s time.

We get to enjoy Christmas with some new Texas traditions and spend time with new, but already beloved and dear friends… Although we miss our families in Chicago terribly, we are incredibly blessed here….  And with weather in the 50’s all December.. who can complain.

We have met an amazing family here where the wonderful mom has offered to tutor Gabi after school to try and get her to write and read at least to be able to keep up with her peers. Just out of the kindness of her heart. Gabi is “severely behind grade level” in all subjects.  When her teacher tells me this, I chuckle. She will write her name eventually.  She will be able to read eventually. It’s all perspective.  But this mom is giving Gabi a chance to thrive in Kindergarten!!  We’ve been in Texas for only 8 1/2 months and this is only one of the many blessings we have received…how incredible is that! Praise of thanksgiving for sure!

I received an email out of the blue the other day from a father of a childhood friend of mine. I have not seen this friend in over 25 years but we keep in touch through facebook.  Her father is connected with a few men’s group of his Catholic church and one of these men sent me this email…

Dear Terry,

As you know, the premise of Advent of Hope (a 3-night devotion at our church) is simple — the more faith you have, the more hope you have. Last night I talked briefly about a few people who handle their suffering with faith and hope in God.  You were one of those people I talked about . I admitted that I have never met you but that, through Rick’s constant urging, I’ve been praying for you for about 4 years.  I mentioned to the congregation your struggle with Gabi and emphasized how you handle this with faith.

It’s a blessing for me to know you, and now a blessing for a few hundred people to know just a little bit about you.  Through my talk last night, you blessed them.  Now they pray a blessing for you.

Thank you, Terry, for your faith, hope and love — and your inspiration.

Joe

God must have known I needed a good cry that day. But I mean, really???  I feel like a mess, a complainy disaster of a mess most of the time.

We have been working with Gabi with her eating but she still stores her food in her cheeks like a little chipmunk and we can’t get her to swallow it.  I pray they can help us get over this hurdle. IMG_6489

Thank you to all my friends and family… I am grateful for you everyday.  Jesus wants us to see Him through everyone we encounter and I truly do…

January 12th.  With God’s help, we can do this. We’ll be at:

Our Children’s House at Baylor:
3301 Swiss Ave
Dallas, TX 75204

Love,

Teri

 

 

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Highs and lows

I miss my SJMP. I miss hearing the highs and lows of my friends. I miss hearing laughter from new moms and I miss sharing in their tears… Here’s to you ladies.

My high today is – We’re in Texas.   IMG_6815

My low today is- We’re in Texas.

IMG_7368We moved to McKinney, TX on April 3rd. We transferred the kids to their new school at the end of the school year. Even just 6 months ago, I can’t believe my anxiety levels didn’t cause me long term damage.  Well, the jury is still out, I guess :) The transition has certainly had plenty of highs and lows but for the most part, it has been OK.  We’ve already made some really great friends here and we have put on a light sweatshirt maybe once since April. It’s outstanding!

However, I miss my AH Patton peeps, my Ridge Ave family, my SJ community, my parents and my sisters…the raw pain is subsiding, but the lingering ache is still there everyday.

One of the reasons, we chose Dallas was because of the outstanding medical facilities here. We have already found a wonderfully compassionate cardiologist, a tolerable neurologist, we will be seeing the Gi team soon and a team of therapists for Gabi.  The school has embraced her needs and is working with us to get all the services she needs.

And coming to Dallas includes an all inclusive resort and spa for 30 days and 30 nights! Pretty sweet, right?  Oh wait, no I meant an all inclusive feeding clinic for 30 days and 30 nights.  They’re easily confused.

October 20th is the day. Gabi will be admitted into Our Children’s House at Baylor’s inpatient feeding program for 30 days.  It will be intense. It will be exhausting. There will be lots of tears (from me and from Gabi). I am afraid to pray for any specific results because I am trusting that God will be there for Gabi.  She is going to have to work really hard.  And I am trusting that God knows that this is our 4th feeding clinic and I feel like it’s our last hope.  It’s not, of course, but we have exhausted all outpatient program’s efforts.

I am heartbroken that I have to leave my 4 other babies for 30 days. My heart is breaking.  They are still adjusting here. We are all still finding our way. 6th grade homework is getting intense. T’s anxiety is creeping up, M is finding out which friends she can trust, and Max just needs me to help him go potty.  I will miss them so much.

IMG_654130 days.

I can do this.  

Gabi can do this.

My kids can do this.

Ethan can do this.

 

Always with God’s continued love and guidance. And maybe, just maybe… we won’t be using the G-tube when is done

Love you all, Teri IMG_5588

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Our first day in McKinney

Our first day in McKinney

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5 more weeks!

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Chicago has it’s first snow today so I thought I should give an update here,

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We are settled into our new home, although it still feels like we just threw our stuff down and where ever the furniture landed is where it’s staying and for the most part, I’m OK with that. Living next to our church has brought us physically closer to our worship space and the people we worship with, and the proximity has brought us even closer to our faith. We left the comfort of our neighbors, we left the comfort of having a long term plan but hearing those church bells ringing every hour truly reminds me that everything is going to be OK.  It’s been sad, traumatic but also a true blessing!

 

 

 

 

We survived Halloween! Ethan jr. went trick or treating with his friends for the first time. It was big moment for them and they did great! If you don’t know my feelings towards this “holiday”, please read last years post

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Since our cats are being boarded ay my mother’s house, we invested our emotions, time and money into a few new pets. Guinea pigs!!  We have been adopted families of 3 adorable guinea pigs and we have 1 survivor.  Trixie is our survivor. Charlie and Daisy have passed on to Guinea Pig Heaven. It’s been good life lessons for the kids here as far as grief and loss.

We finally got in to the Lurie Children’s Hospital Feeing Clinic.  We had our initial appt and my excitement was temporarily crushed but by God’s wonderful grace, Gabi is now eating up to 18 bites per meal!! All 7 or so clinicians evaluated Gabi and asked me lots of questions for over an hour and then they excused themselves to discuss the best plan for my dear Gabi.

We had:

  • a psychologist
  • 2 nurses
  • 2 Feeding/speech specialist
  • GI doctor
  • Dietician

They all came back and my excitement wasn’t hard to hide.  Dr. Fishbein sat down and sighed.  I know when the doctor sighs, there is a gut punch coming soon.  I closed my eyes and said 2 quick prayers. One prayer was for strength to keep the tears at bay and for wisdom to speak clearly to this team of medical professionals. The second was for my sweet Gabi.  A prayer for help. Please be with her.

Following the despairing exhale, Dr. Fishbein explained to me what an outpatient program is.  Did I look new to this?  He then explained to me that we have no starting point with Gabi. They couldn’t find a place to begin the feeding clinic for her. He went on to ask me if I was willing to travel. That is never a good question in medical explanations.  He explained that an inpatient program would be best for her. I quickly thought to myself… OK, how bad can this be? Travel to where? Ohio, MI, WI? As long as we could drive… But would we have to fly?How much our airplane tickets? How could we possibly afford this? Slow down, slow down…

Dr. Fishbein said there are 2 wonderful clinics. One in Indiana, one in Maryland.  Indiana, I thought?  Awesome, we can do this.  Evansville, IN.  6 hours drive. Oh.

“How long would this be?” I asked him, thinking and hoping he was going to say 1-2 weeks.

6-8 weeks.

I couldn’t possibly. The other kids? School? Max?  How could we possibly do this?

photoI took a deep breath and again prayed for strength.  OK.  “Are there any other options?” I asked. Before he got a chance to answer, I was blessed with wisdom as I rephrased my question. “Would it be possible for us to try the outpatient program here and FIND a starting point for her?”

“Well, the swallow study was years ago and I don’t trust those results.  We don’t know what is physiologically going on with her. I don’t want to make guesses.” He said.

The wisdom poured out of my mouth. I don’t really remember what I said but I did convince them to take her as a new feeding clinic patient.  I eloquently spoke … without any tears!!….and said something like this- Gabi has endured every negative outcome that was possible but she has fought and she has defeated all odds.  Please just give her a chance.

They did. And we have been there for 5 weeks! They agreed to reassess her standing after 5 weeks and they have given her another 5 weeks!  Molly, our SLP, is thrilled with her progress! She has a long way to go but we have proven to this team that Gabi will prevail!

We work hard… and the inpatient program is not off the table but right now, we are getting the help she needs. We have appts made until Dec. 18th.  The team keeps saying that we will hit a wall soon and will need further help and guidance.  I am open to whatever Gabi needs.  But right now, she is kicking some butt!

Her endurance is still a weakness. She can’t make it up more than 4 or 5 stairs before needing assistance and she still needs help when walking a long distance.  Dr. Cava doesn’t really have an explanation for this. Her peers with the same heart condition are running and riding bikes. Her sats are still between 87-94, which is great for her.  She continues on her 5 meds and even though Walgreens is a pain in my butt, all the meds are staying the same for a while.  She is still 95% G tube fed but Molly even mentioned that our next appt, we can discuss cutting down on some of the formula to try and get her “hungrier”!!

 

In September, we had 2 birthdays, in October, we had 1 birthday.  IMG_6677 IMG_0072 IMG_6815

In November, our beloved Connor was ordained a Deacon within the Archdiocese of Chicago. In May, he will be ordained a priest. We are so happy for him and so very proud of him! The picture below is Connor with his 11 classmates that were also ordained and the dude in the middle is Cardinal George! And the guys on the right hand side, are several of the bishops in Chicago.

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We have had football championship games and we played hooky one day to go to the zoo. There was a baby snow leopard with its mother and its mother was on high alert staring us down.  We got so close. It was awesome!

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Thanks for reading.

Much love  and peace,

Teri

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It’s all Praise!

DSC_0028We have a plan!  And God is chuckling.

We got approval for “the church house!!” I want to write a deep, thought provoking post here but I am up to my neck in boxes, so I will write all the details after we move this Friday, August 2nd.

These are the wonderful things that have happened to us in the past few days.

1. We planned a trip to Great America because the kids get their free tickets from the reading program.  We planned the day only to have Ethan sr. call me 2 days before from work and tell me that he had to go into work that day.  They scheduled a meeting for that day and he had to be there. I was mad. angry. pissed. I felt like he was choosing work over his family which I know he sometimes has too. I shook it off and made a back up plan. The day we were supposed to go, Marissa woke up in pain and sick. Our backup plan was to head to the zoo with my sister and niece so before we were to leave, I raced over a urine sample to the pediatrician and we tried to go to the zoo… Marissa’s FAVORITE place!  She was too uncomfortable and we had to head home after only an hour.  (We did get to see the Dolphin Show- although she cried through half of it). We got results of a bladder infection and started an antibiotic. Our trip to Six Flags would have been ruined.  God works in very funny ways.

2. We also started my second oldest son (almost 8) on a new medication this week and it is a miracle for him. I cried tears of joy for him as he is so happy and calm and not down on himself anymore.  Ethan Sr and I had talked about starting treatment for a while now and I have been praying and felt the Holy Spirit telling me to help my son.  We did and it is truly miraculous…. I know it’s going to be a constant rollercoaster but I am just so happy for him right now.

3. We got approval on a house!!!  WE HAVE A PLACE TO LIVE!  We will be renting a home from our parish, St James.  They own a few houses and we were able to push them along to be approved.  I will post the entire story of how God worked in this story later.DSC_0062

4. I called the new feeding clinic to check on Gabi’s status.  They had “never received” her records so I made a few phone calls, got a few apologies and we have an appt set for August 8th!  I am thrilled to get her started…

5. Gabi went pee pee on the potty!!

6. I got a phone call from one of my favorite organizations called Dynamic Catholic started by Matthew Kelly. We have made donations in the past and I frequently order books from their organization. She was calling to see if we could possibly make another donation at this time.  I told her that we were really in a tough spot right now and just couldn’t. I felt terrible.  We chatted a few minutes and not surprisingly I started crying when she asked about Gabi. She personally added Gabi and our entire family to their prayer list.  I was so touched by that phone call.

7. Did I mention we are approved for a house?!

Thank you thank you for all of the prayers and support. A special thank you to my  awesome sisters, Heather and Steve, Steve and Steph, Mark and Karie, Sue, and my mom.  

I almost forgot to say thank you to the St. Brendan’s Men’s Group in FL for all their prayers for Gabi.
The kindness and support means more than you’ll ever know.

My sweet friend, Nicole, that I finally got to see after many years

My sweet friend, Nicole, that I finally got to see after many years

My handsome 2 oldest boys

My handsome 2 oldest boys

So much love and praise,
Teri

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21 days

Words are not coming to me very easily right now.  I wanted to post about this so I don’t ever forget where we have come from and how strong our family is.  I want to remember these days vividly so I can count my blessings over and over when we are out of this situation.

DSC_0071We have 3 weeks (21 days) to move and have no where to go.  We have a few places but all of them have a few obstacles we need to overcome first… one isn’t available until Aug 15th, one doesn’t allow pets, and one is owned by a shady, incompetent company that won’t return our phone calls.  There isn’t much else on the rental market that can home 7 people that is within our price range.  We get so close and then the rug gets yanked out from underneath us.  My kids are stressed, my husband is exhausted and I am trying not to cry in front of them all.   I am angry.  I am really angry.

Do we create this drama?  Do we not work hard enough?  Why is this happening?Where are you my loving God?

I know.. for a fact… that this will work out.  Something will work out because it has to.   I still have faith that God has a plan but I am upset and angry right now that I don’t know that plan. I am angry that others are able to enjoy their summer and we are hanging on by a thread.

And the new feeding clinic will not call me. I have called and called to get Gabi scheduled for an evaluation but they haven’t reviewed her files yet. They are supposed to call me… I need something to move forward…

It’s a tough day.

Happy 4th of July!

Happy 4th of July!

Much love,
Teri

 

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Weight Gain.. Is it the Holidays for Gabi?

It is early Saturday morning and the house is so quiet. In a few minutes I have to go to Gabi’s bed and turn off her pump before it starts beeping. This will start the day’s long routine of feedings for her.  We still haven’t found our groove and her quality of life sucks right now.  Cardiology tells me to get her up and moving to get stronger.  GI tells me to keep her still 5 times a day, an hour each time, to feed her via the pump. I feel like I am going crazier!

Last Friday, April 26th, Max had his 18 month (even though he was already 20 months) checkup at the pediatrician and I asked them to please weight Gabi.  She had been looking chubbier and bloated the days prior.  She weighed 30 lbs. 2 oz!!  Let me say, she was 26 lbs. 14 oz on April 18th, the day we started this crazy routine.  4 lbs in 8 days! What the holy heck?  too much.

Immediately I called into Gi and cardiology. Of course, I got a hold of cardiology faster and I was on the phone with the nurse for about 45 minutes. We checked her sats, her respiratory rate, her pulse, I pushed on her belly, we checked her ankles for fluid retention, we checked her shunt and her eyes but everything checked out OK.  Dr. Cava had stopped her last diuretic on April 8th, so they were super concerned of any fluid buildup, but no signs of it. I knew in my gut that it was the food.

GI’s response was to blame the scale.  They told me the scale must be off, and that there is no way she could gain that much weight in so little a time.  I was furious. I explained to them I could feel the weight when I picked her up.  I agreed to give it over the weekend to actually have a true comparison on the same scale. So, she was weighted 30. 2 on Fridy, the 26th. By that Monday, the 29th, she weighed 30 lbs 10 oz.  4 oz of weight gain a day!

Finally, the dietician agreed to take the food down a notch, only removing 2 ounces of Pediasure and the tablespoon of veg oil.  But they were still acting so surprise that she was gaining so much weight.

I agreed to give it a week on this new plan and see what she weighs the following Monday, which will be May 6th.

She has been throwing up and hates going on the pump.  It is awful. I have the pump rate set at 211 during the day and it seems that is the fasted I can push food into her for right now. This means, the pump pushes 211 ml’s of food (a little more than 7 oz) of Pediasure (diluted with water) into her stomach in an hour.  Her total amount of intake needs to be 771 ml’s of Pediasure mixed with 515 ml’s of water.  This equals about 42.8 ounces of liquid or  almost 5.5 cups. She is not tolerating this well. Neither am I.

Please continue to pray for my Gabi.

Love,

Teri.

 

 

 

 

 

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New Feeding Routine

IMG_3347It’s been really… really hard.  We have successfully changed over Gabi’s formula to a new higher calorie, higher fat one called Pediasure 1.5.  I think she has put on weight already, so I know it’s good for her and it’s all going to be worth it.  But getting her off of night time feeds is going to be really difficult.

We are on step 2 of the list.  She is hooked up to a feeding pump 5 times a day for an hour each time. That is almost every other hour. AND I am supposed to try and give her some food for her to try to eat orally BEFORE each pumpIMG_3430 feeding!  If I have to go somewhere, and having 5 kids to tote around, I HAVE to go somewhere… all the time.  We haven’t found our new groove yet and it’s been tough.

The transition to the new food was tough too.  I did some research on how our body responds to higher fatty foods. Basically, because she was on a low fat, low calorie diet for 9 months, her pancreas and gall bladder weren’t doing much work.  Now, all of the sudden, they have been boosted up into turbo speed.  Everything will adjust, in time.  But the past week, she has been crying from discomfort and throwing up a lot… like 3 or 4 times a day. ANd of course, Big Ethan has been out of town. The GI nurse told me to stick it out and sure enough, things are getting better.  But we are not at her full feeds yet.

IMG_3429When she is hooked up to her pump, she is confined to a chair or to the table like this. We have been trying to use her Dora backpack and she can carry her pump on her back.  So far, she IMG_3379will wear this for a few minutes but it is heavy for her and cumbersome, so she asks to take it off.  It is constant.

AND to make things worse, Max, our troublesome 18 month old, is constantly trying to grab at the tubes and play with the buttons.  So I have to monitor things ALL THE TIME.  Maybe it’s a blessing we have this small house, then I can be more vigilant and hear things from one end of the house to the other. God planned that well.

It’s been a roller coaster of emotions going through these changes.  I am so so sad for her.  In the midst of all the vomiting and discomfort, she had to miss school and a field trip to a local farm to visit the beloved animals.  However- perspective- I know she is only 3, and she will be able to see many farms…

IMG_3432AND then there’s the ignorant comments that are so hurtful. I know most people just don’t and can’t understand.  But please don’t try and tell me just to try feeding her certain foods and then she will eat, or don’t try and tell me that the window of overcoming oral aversions closes after toddlerhood. Please don’t look at me and wonder why my almost 4 year old isn’t potty trained…and please don’t tell me that she has come so far and I should be so thrilled and overjoyed… because yes she has come far and yes she is doing well.  But she cannot keep up with her peers and she cannot eat and I am trying my hardest to teach her to use the potty and to eat.  And I feel like sometimes I’m not doing enough for her and like any other mother when their kids aren’t thriving, naturally, they feel like a failure.  It is very lonely. Motherhood is very lonely, but this is amplified by ten thousand.

But I trust in God’s plan for her and I know we’ll get there.  I like to document these trying times so that I can look back and remember and validate how far we have come.

THis is her daily intake of food: 485 ml of Pediasure ( about 4 cans), 425 ml of water and 1 tbsp veg. oil

THis is her daily intake of food: 485 ml of Pediasure ( about 4 cans), 425 ml of water and 1 tbsp veg. oil

 

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As long as I find an activity, and as long as she tolerates the feed OK, then all is well :)

As long as I find an activity, and as long as she tolerates the feed OK, then all is well :)

 

The goal is to be at step 5 in 2 weeks.  We have to go really slowly…

Love,

Teri

 

 

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Monday’s appts

Our day began with pouring rain, continued with gray skies but we emerged with sunshine!

Literally and figuratively.

We literally drive in to Milwuakee with scary, temultuos downpuring of rain. When we arrived, my car died in the valet and we were 45 minutes late.  It took us over 2 1/2 hours to get there.  Rarely does it take more than 2 hours to get to Milwaukee. We race up to the Herma Heart Center and we missed our spot for the ECHO. It was at 9 and we didn’t get there till 9:45.  Sigh.

We wait in the waiting room and deal with the car situation. We’ll have it towed from the Valet and while we had our appts lined up, we could get it fixed. Chris and Ethan to the rescue.

A kind nurse came out into the waiting room to tell me that Carol, Dr. Cava’s nurse, was trying to rearrange our day.  She had called to GI to get that appt moved from noon to earlier so that we could do cardiology appts later.  Just reverse them.

However- when Carol called she found out- The GI dept. didn’t. have. us. scheduled. Sigh. Gray days.

Long story longer- thanks to Carol we had our long day extended longer but were able to fit everyone in.  We started with seeing her and getting the EKG. We saw Dr. Cava briefly and chatted a bit about a few concerns.

We ended up waiting for the GI doc, Dr. Martinez, for 3 hours. Yes 3 hours.  We were an “add on” because they messed up our appt and Dr. M was, of course, way behind schedule. Sigh.

I love love love CHW but I have some suggestions for them as far as coordinating all of these appts.  More about that later.

Cardiology Results

1. Heart function is good. Not great, but good.

2. Rythm is good.

3. Her heart is still way enlarged but “normal” for HLHS anatomy. The fluid that has built up around her heart over the years is finally subsiding.

4. Sats were great- around 92. Heart rate about 120. Both perfection!

5. The valve that was the cause of severe backwash before the fontan is much better.  Dr. T made repairs during the fontan procedure and the backwash is down to just mild. Dr. Cava said the valve isn’t pretty… meaning lots of suture line and scar tissues but it’s functioning. For some reason, that stung a little.

6. Her fenestration (hole placed to relieve pressure) is working properly. At some point- either in 6 months or 6 years- or never- it may need to be closed with intervention. This would just be a cath procedure.

7. He did take her off the Aldactazide. She has been on this med since after her Norwood.. almost 4 years.  He contemplated for a while but said we need to try it. This is a diuretic and it has other benefits to reshape the heart.  Risky. We are supposed to watch for increased respiratory rate. All other meds stayed the same- Enalapril, Coumadin and lansoprosal.  I was so excited to get down to 3 meds… but…

All in all Cards was all good!

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GI Results

I almost left during the day because I was so frustrated but I am so glad I waited. Dr. Martinez was so nice and so knowledgable.  He helped me understand her feeding problems A LOT!

1. Gabi has lost 2 lbs since Dec. 2012.  She was 29 lbs in the summer of 2012 and she is now down to 26 lbs.  3 lbs is a lot of weight for a little one to loose. All depts agreed that something needs to happen to help her gain weight.

2.Gabi is currently on a formula called Pepiasure Peptide (a low fat formula) to avoid effusions. That is explained here.  Usually the post fontan kiddos are only on a low fat diet for a few weeks after surgery but knowing Gabi’s history, Dr. Cava wasn’t taking any chances. He FINALLY gave the go ahead to put her back on regular Pediasure! I met a new nutrionist and she went through a long term goal for Gabi and step by step procedure.  I am not too happy with this new plan because we were in such a groove with her feedings and now it’s changing, but I guess the groove wasn’t exactly working- so I will do whatever she needs.  “They will be done”.

  • In about 2 weeks, the formula should be changed over. It is a gradual process.
  • We need to get her off nighttime feeds- this completely affects her metabolism, stomach lining and interferes with any potty training efforts.
  • We need to start using the pump during the day for longer,  more stable feedings compared with freehand syringes. The goal is to get her to do 5 feedings at a rate of 255 ml/hour.  This will not be easy because we need to keep her in her seat for an hour at a time hooked to the pump, 5 times a day. Yikes.  And that rate  is really fast for her.  At night, her rate is at 46 ml/hour. Right now, I give her 60 ml’s in a syringe an hour!!  I have my work cut out for me.

3. Dr. Martinez started her on a medication called cyprheptadine. Back to 4 meds :). This is actually a med for allergies, similar to Benadryl. But the side effects of the drug is what will benefit Gabi.  The side effects are crazy. The drug will help her stomach muscle fibers stretch and constrict much more efficiently.  Right now, because Gabi is mostly fed liquids, the stomach doesn’t have a chance to stretch like it does when we have a big meal. This will help trigger the brain function to tell her she is hungry!! Amazing. Because her stomach will not be stretched and constricted so harshly, she will be less gaggy and more likely to swallow her food!! It takes about 2-4 weeks for these effects to kick in, but I am so excited for her!

The lengthy, step by step process of changing Gabi's feed plan

The lengthy, step by step process of changing Gabi’s feed plan

4. Dr. Martinez did mention being referred to the feeding clinic but he wants to get her off nighttime feeds first and get her stomach working more efficiently.

Baby steps in the right direction!

We never made it to Neurology.  Next time.  Last time I was there, they looked at Gabi’s shunt for about 10 seconds and said.. call me with problems.  So, I will get it checked… next appt time.

Oh right, the car you ask??? I forgot the put the car in park… doh!

After all the waiting and waiting some more, we finally got home at about 8pm but it was nice to have daylight… even sunshine on our way home. We left the house at 7am that morning. Gabi and I were absolutely exhausted. still are. But we came home to Daddy’s birthday with lots of hope for our sweet Gabi!

Love,

Teri

 

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