Counting Our Blessings

Counting Our Blessings

Saturday, February 18, 2017

What is a Feeding G-tube???

Thanks for your overwhelming love and support from my previous blog post.  I wanted to let you all know that we have a surgery date scheduled for March 9th at 11:45 for the G-tube.  I know many of you had a lot of questions regarding the G-tube and how it will work so I hope to answer those in this blog. 

A gastric feeding tube (G-tube or "button") is a tube inserted through a small incision in the abdomen into the stomach and is used for long-term enteral nutrition. Some people with neuromuscular (and other) conditions have difficulties with chewing and swallowing (dysphagia). This can sometimes lead to aspiration (food or drink 'going down the wrong way' - ending up in the lungs), which in turn can lead to choking, bacterial infections and possibly pneumonia. If this is the case, it may be necessary to avoid certain foods & drinks, or in some cases to cease oral feeding completely.

So now that I have given you the textbook terms let me answer some of the most asked questions:

Can you still eat through your mouth?- Yes.  For now I can eat soft, smooth, wet foods. Because of my swallowing weakness I get food residue build up in my hypopharynx.  I can feel this so I will swallow six or seven times per bite to empty the residue.  However eventually as things become weaker.  I will lose the sensation that things are stuck and that is when it will be too dangerous for me to eat by mouth.

Will the tube stick out of your stomach?- Yes and No.  For a few months while my surgery site heals and creates scar tissue around the incision I will have to live with a tube sticking out.  After that they will pull the tube out and put a flat mic-key button in.

What will it look like and how do the feedings work?-  

What things can you eat through the tube?- Caloric Nutritional meal supplements, medications, and things that are blended well.

A few things “Not to say to a person who is getting/has a feeding tube”: 
  • I would kill myself if I couldn’t eat anymore
  • I wish I had a feeding tube so I could lose some weight
  • You are so lucky you have an excuse not to eat the things you don’t like
  • It’s not that bad, at least you can still eat some things

Can you taste the tube feedings?- No.  This will be great because most of the formulas are not very tasty.

How often does the tube need to be replaced?-  We were told this depends on how well we keep things clean and maintained.  Most tubes last 12 months and can be easily replaced in your doctors office.

Can you still go swimming?- Yes I can still go swimming, take a shower etc.  

As always feel free to ask me any other questions if i miss anything.

Things I’m Thankful for:
- All of you(seriously we feel so blessed by your prayers and desire to walk this road with us)
-A great conversation with my kids about the surgery.
-Lots of reaching out from friends and family with prayers, sweet words and offers of help.
-The most amazing clam chowder from the world famous Splash Cafe in Pismo.
-My son Jonah getting a Fearless For Christ award at school.
-The incredible amount of donations that have come in for our future service dog.
-God’s word(the bible) that is food to my soul

Things to Pray for:
  • All of the upcoming tests and procedures before the surgery
  • My anxious heart(that I would trust God with the unknowns)
  • For Jason and the kids as they continue to process it all.
  • For the Jog-A-Thon next week

Wednesday, February 15, 2017

Finding joy in the next step

I started attending two bible studies a few weeks ago. In one of the studies we are going through James.  As someone who has and is walking through trials I find the first chapter to be incredibly encouraging.  I appreciate that James is very specific in verse 2 in using the word When. James 1:2-4 Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness.  And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.  James doesn’t say if, or maybe, or by chance. No he’s very specific and for good reason. There is no way around it,  we all will endure trials of different variations.  It will look differently for each of us but none the less we will experience hardship.  It’s a fallen broken world we live in and one of the hardest lessons we christians have to learn is how to be joyful in the midst of pain and suffering.  It’s not easy at times. If were honest it’s not easy most times. What does it mean when James says to “count it all joy”?  In order to count it joy we have to first understand that it is for our good. It is growing our patience, and deepening our faith and dependence in Christ.  Also in order to count it Joy we need to have hope for our future.  In Romans 8:18 it says  For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.  This is how I find Joy.  I trust that God is working out something far greater than my pain and suffering and I have the HOPE and assurance  that it is nothing compared to what lies ahead for me.  

 This is exactly what I needed to be reminded of this month as I enter in to another hard step in my MD journey.  Over the last three months I have hit a faster progression with my Muscular Dystrophy.  I have felt it in my swallowing, my breathing, my digestion, and many other muscles.  As a result of this we have had to make some hard decisions regarding next steps for me.  The first issue we have had to address is how to get the best proper nutrition into my body.  My swallowing muscles have become progressively weaker making it very difficult and dangerous for me to eat  a lot of foods.  If the foods are not smooth, soft, and wet I’am not able to get them down properly.  For every bite it takes me six to seven swallows to remove my food from the esophagus.  I have to make sure its clear before the next bite or the food will back up and block my airway.  You can imagine how tiring and hard this makes eating.  Because of this issue I’m not getting adequate nutrition and that creates a whole host of issues in my body.  With the suggestion from my doctors we have decided it is best for me to have Surgery for a feeding G-tube.  I will explain more about this in a later post.  Basically my feedings will go straight in my stomach allowing me to get proper nutrition without working so hard and putting myself in danger.  This will be in the next couple of weeks so I would appreciate your prayers.  Normally they would do this surgery in a radiation lab but because of my respiratory weakness they will need to do it in the OR and intubate me during the procedure to take the load off of my lungs.  For MD patients it is dangerous to go under anesthesia.  From my understanding it is because it relaxes your muscles and our muscles are already weak so to relax them any more compromises them. This is increasingly dangerous for your main organs. The doctors will do a series of lung functioning tests in the next week to determine the progression of weakness.  I will also have a full cardio work up and am currently wearing a heart monitor because of some arrhythmia issues. 

Things I'm thankful for:
-A night away with my husband(given by the in-laws) to process, lament, and talk through all these hard things
- Sweet friends who live around the corner who come over and share what life with a G-tube is like
-Friends and family who take you to doctor apts.
-Sweet friends who pray with you and send you encouraging books
- foods that I can still enjoy
- Great insurance, doctors, and procedures that help your quality of life
- two bible studies a week that keep me in the word

Things to Pray for:
Would you pray that both Jason and I would be steadfast in our faith, and that we would cast our anxieties on him.  That with this new step we would find Joy and comfort in knowing that he is making us complete, that he works all things together for good, and that he is the lifter of our head.  I know He goes before us and that we can trust in his goodness for our life.  Pray that as we explain this next step to our kids they would have great understanding, that we would be clear in our explanations, and that it would not bring about any fear.  I pray that the Lord would already be working in their hearts an understanding of what James is saying in Chapter one.  Please pray that the surgery would go smoothly and that there would be no complications or weakness from being put under.

Thankful for you all as always,

The Lietzau's

Tuesday, January 31, 2017


Incredible News!!!

UCLA called this afternoon and they informed us that they were officially taking Noah off of the Heart Transplant List.  The team met this morning to go over last weeks heart cath results and to discuss his case.  Noah is no longer sick enough to qualify for a Heart Transplant.  Praise the Lord!!  This does not mean that he no longer has Restrictive Cardiomyopathy it just means that he is not sick enough to need a new heart.  They will still see him at clinic every three months and he will remain on his meds.  They want us to celebrate but also want us to be aware that things could drastically change at any moment.  We are celebrating for sure.  What does this mean for Noah? Well we celebrate that his heart is doing well  for now but Noah is still very weak.  His muscular Dystrophy effects his breathing and many of his muscles.  Please continue keeping him in your prayers.  Were so thankful for the gift of time that God has given him with his own heart.  All thanks and praise to you great God of Love.

Saturday, January 28, 2017


Hello Friends,

I wanted to make you all aware of two Fundraisers we will be holding next month to help raise money for a Mobility dog.  On February 4th from 1-5 Faith Koontz and Greer Bascom along with several others will be putting on a Boutique.  Their will be lots of fun handmade things and baked goods on hand. I know so many of you have been working so hard on this event.  Please help spread the word and invite all your friends.  It is sure to be a fun event.   

The Second Event will be a Jog/walk-A-Thon and it will be held on Saturday February 25th from 8:30-10:30 at Heights Christian Junior high. The address is 12900 Bluefield Ave. La Mirada CA 90638.  If you are interested in Jogging/walking please contact Melody at to pick up a pledge packet.  For those of you that attend Grace look for me tomorrow as I will have them to pass out.  This is open to all ages.  Their will be prizes, 50/50 raffle, and more so stay tuned for more details.

Thank you so much for all your support.  We are grateful for the ways we have already seen the Lord provide for this big need.

Thursday, January 19, 2017

Prayer for Noah

I wanted to remind you all that Noah has his Heart Cath coming up this Monday at 9:00a.m. For those of you who are new to our blog. Cardiac catheterization (cardiac cath or heart cath) is a procedure to examine how well your heart is working. A thin, hollow tube called a catheter is inserted into a large blood vessel that leads to your heart. They put Noah to sleep and they go in and are specifically looking at his heart pressures. They do this procedure every six months. Five years ago his pressures were a little below the normal range and he was put on the Heart Transplant List as a status two.  We held our breathe every time the phone would ring.  A few years ago his numbers were in the low normal range and doing much better.  They stayed this way for the next year and a half so the team moved him to status 7 on the list.  This means he is still occurring time but is not accepting a heart.  We are so thankful for how well Noah's heart is doing but we also never forget how fast his pressures could change and how big the possibility is of him going into cardiac arrest.  He still has a scary EKG that has been unchanged since he was 9.  It basically shows that he is in major heart failure.  The doctors are very puzzled by this and monitor him closely.  On Monday if his pressures are still good they will move this heart cath to every year.  This would be amazing! If they are not good he will need to become active again on the transplant list.  It's a procedure that none of us look forward to so will you please pray with us for good results.  Now that Noah is older it gets even harder.  He is processing all of this right along side of us. He understands it all and its a lot for a teenager.  Noah also needs to have surgery on his other foot.  Last year we were told that Noah has Tarsal Coalition in both of his ankles. Most likely a symptom of MD. This was causing Noah pain in both feet.  Since they do not do them both at the same time, we had them do the foot that was causing the most pain.  This was a bigger surgery with a harder recovery than we had expected.  We wanted to hold off on doing his other foot for as long as we could but it is starting to cause him a lot of pain.  Please pray for wisdom for us as we try to decide the best time for this surgery.  He is slowly showing more and more signs and symptoms of this Desmin Muscular Dystrophy that we both share.  I can't even explain to you how incredibly hard it has been for myself to walk through this and experience loss after loss but to watch your son struggle is 1000 times worse.  Even though I'm confident that the Lord is going to use him in powerful ways my heart hurts.  When he asks me if he might need a wheelchair one day I feel a sucker punch to the gut.  When he tells me it hurt to breathe at youth group, or his legs hurt from running, or I watch him struggle to play a game of football, open a jar, see his lack of muscle tone.  It all wrecks me.  Pray for Noah.  Pray that he would cling to the promises of God.  That he would trust in his goodness and truly believe that he has good for him.  Pray for Jason and I as well that we would believe the same.  Thank you for those that have carried us through these years and continue to pray for our family and thank you to those that are just discovering our story.  We are so blessed by you all.

Thursday, January 5, 2017


Friends you have all blown me away by your support and generosity.  In just seven days we have raised $9,850 all because of you.  This process has been similar to our adoption with Hannah.  Lots of paperwork, phone interviews, learning, eventually being matched, and patience on God's timing.  We know this will be a huge gift for our family and will make things so much easier in a lot of different ways for us.  We are so amazed as we learn all the things a dog can be trained to do.  I linked a couple videos in case some of you are curious.  A good friend of mine Faith Koontz, her mom Greer, and a bunch of volunteers will be hosting a Boutique fundraiser. It will be held on February 4th 2017 from 1-5 at 531 Chestnut St. LaHabra CA 90638.  There will be lots of homemade items, baked goods, and various vendors represented. Thank you to everyone who is helping. I was overcome by a donation that came in from a family who's child is battling cancer.  It's so hard sometimes to be on the receiving end but I get how Good it feels to give even when your facing your own trials. Sometimes its the people in the middle of the storm that get it the most. Thank you dear family for your generosity and please know that your family and your son will be in my prayers. I'm so thankful that these troubles even though most days it doesn't feel like it,  really are light and momentary compared to what Eternity will be like with our heavenly father.

For all my prayer warriors, Noah has a heart cath coming up on January 23.  Our prayer is that their would be no surprises and that he would have good numbers that allow him to stay inactive on the transplant list.

Thank you all so much again for all your love and support.

Thursday, December 29, 2016

Redbasket Link

Thank you so much for your outpouring of love and generosity regarding my last post.  I was in the process of setting up an account with Red and did not have the link yet to give you all.  It is up and running now.  Red Basket is a non-profit organization that allows individuals to donate time or money directly to people or projects that need help. Your donations are tax deductible and 100% of the profits are directly given to the cause.  The link to the page is We have a baked goods boutique and walk/jog-a-thon in the works.  We so appreciate your prayers and encouragement as well.  I was so encouraged this week by a donation that came in from a gal who has been following our story since we adopted Hannah.  They are not connected to anyone we know.  I know there are several of you that have found us in the same way.  You are all examples that our suffering is not just about us but what God is doing in the hearts of those around us. It really is amazing. Thank you for your outpouring of love and support.  We feel so blessed by you all.