Feeding Tools for the Tubie Kiddo

We are finally at a point where we are seeing some progress with our little one's feeding. Listed below are some of the tools we have used for her. I will add more as I think of them.


Boon PULP Silicone Teething Feeder: $5.99

This feeder is great because you can put fruits, some steamed veggies and our little loved hers because she had control of it! Not to mention it has a built in teether on the other end. We now use it to put popsicles (we just cut up the popsicle) and other frozen items like fruit in it. It can be messy, but it is fun for little ones, especially teeters.

Munchkin Miracle 360 7oz Trainer Cup: $12.64 for 2

A friend recommended this cup after she had success with her son. There is a version for big kids that does not have handles and can hold more volume, but this size is perfect for our 18 month old. It is relatively spill proof and easy to clean. It is also recommended by dentists. The way it works is fluid fills up the white part, and a small amount of suction around the edge allows it to flow slowly. 

Abilitations Speech Bin Mr Juice Bear Straw: $13.95 (prices vary on Amazon.com)

This was a recommendation from the speech therapist who did our little one's swallow study. You can squeeze the belly and a little bit of fluid comes up through the straw, allowing your child to get a little bit of at a time. Eventually, it helps them with their suck and for us, helped out daughter learn to drink from a straw. 

Ikea Kalas- 18 Piece Flatware $1.99

This was a random stroke of genius walking through Ikea. Our daughter doesn't particularly care for the baby/kid flatware we had, but liked ours, so we got this safer option for her. I eat with it also, encouraging her to use hers. 

One Star Reviews: An Outsiders View

A few weeks ago I had an issue with a company. I would say this is a regular occurrence for most of us, but the thing is, it made me quite angry. One employee's lack of responsibility, or maybe compassion for her customers caused my daughter to go to the ER. My daughter who has been diagnosed with compromised lungs. During cold and flu season. I was furious.
The thing is, when I really think about it though, I was so furious with this person that I lost sight of her being a human being with issues of her own. Maybe she truly doesn't care, but maybe she doesn't know how. Maybe she has a very lonely life. Maybe She can't have children herself. Maybe she has been diagnosed with something very hard to live with. I have no idea what this persons story is. While I do believe it is her job to care about my child's needs, I don't want the outcome to be her losing her job.  In no way do I believe that me working hard to make someone else's life miserable will make mine better.
Please do not misunderstand me, I 100% believe that employees should be held responsible for their actions. I just want to make sure that in my response to an issue with a company I still remember I am dealing with humans who make mistakes.

What I am hoping to do here is give some perspective on how we react to what happens in life.

Recently I briefly spoke with a friend about something going on at the business she works for. This is at one of her three jobs she works in order to get herself through school while supporting herself and trying to grow her business.
A woman came into the business and was feeding her child. This woman breastfeeds her child and while I wasn't there, the firsthand account I received was that the woman left her breast out after feeding and was asked to cover herself up, not her child. It could have been completely different. Maybe someone did do something completely wrong and actually illegal and ask her to cover herself up while feeding. This I am not sure of, as I stated, I was not present.
This caused a social media storm and people from all over the country began giving this family owned, small business 1 star ratings and poor reviews. By the time I heard about this and spoke with the friend she was very concerned with wether she was about to lose her job. Thankfully, the business stepped up and had a compassionate and professional response. They not only apologized, but hosted an event to raise awareness and funds for a local breastfeeding organization (I am not sure if that is the best way to describe it, maybe it would just be called a milk bank?). They also have stated they plan to better train their employees. I have learned that both sides have reconciled (although some people have not taken down said 1 star reviews which have nothing to do with the quality of the business, only to do with the aforementioned incident).
We live in a world that needs more love and positive responses. The thing I want to really stress is that the positive responses need to be from BOTH sides.
If I thought a woman losing her job would make my life easier, then maybe I would think of it differently, but it isn't that simple.
I always intended to solely breastfeed. To be along side of all of you mamas who proudly feed your child from the supply your body produces. The problem is I was only able to breast feed once. She was two months old and it was the day before my birthday last year. She latched on and even transferred milk. Unfortunately, my daughter (the one I mentioned with the "compromised lungs") aspirated. Feeding her by mouth was very hard on her little body and at a very small 7 lbs she had a procedure to surgically place a feeding tube.
Talk about getting stared at in public.
Most people are just curious, but there are those people who stare with what can only be described as alarm. Who ask "what's wrong with your baby?" I try not to take it personally, but sometimes it is incredibly difficult for tears not to well up in my eyes, I just want to scream "NOTHING IS WRONG WITH HER!" Maybe give them a guilt trip. Maybe jokingly say "if you think this is bad, you should have seen her when she was born 3 months early and had tubes everywhere."
To be completely clear, this isn't just the public. I have had employees say things to me. Actually the first time it happened it was a hostess at one of my favorite local restaurants. It wasn't my daughter's feeding tube, it was when she was still on oxygen and we had to carry around an oxygen tank. I was so angry (as was my mother-in-law), but I let it go. I have a feeling the girl was not taught a lot of tact, as so many others out there. I used it as an opportunity to educate right then and there. When I look back I am actually more upset at the establishment for stopping complimentary chips and salsa with to-go orders.
To this day I still pump. My daughter receives about 3 ounces of milk a day, but the stresses of pumping, tube feeding, multiple therapies and really feeling inadequate in the breastmilk department really go to me. I prayed about it and decided that I would relax a little and use formula.
My daughter is doing great and is miraculously healthy. Each exam has showed not only that her lungs are getting stronger, but she recently passed a test that now allows her to drink by mouth. Unfortunately (yet fortunately in so many ways) she is too big to try breastfeeding now and acts as if I am abusing her if I even try to hold her to give her a bottle. I also intended to give my daughter all organic foods, and while I am able to make most of her food, some days I will try anything to get us closer to not having a feeding tube. We have a long way to go, but I am optimistic.
I think it is so so important to fight for what is right, but really think about how your method of protest is going to affect the lives of others. Really think "is this something that is worth ruining someones life over?" Even better maybe ask yourself how you would like to be dealt with if you made a mistake. I would hope that more that the message I send my child (who will be an adult one day) is that there is always a positive way to look at any situation.
Thank you for reading, and be sure to show someone love today. It may be the only love they receive.

A Day in the Life: Olive is Home

We have now been home over 24 hours, and let me tell you- it has been the most hectic, yet exciting 24 hours. 

Yesterday morning I was told that the eye doctor would come see Olive, however at 3pm when he hadn't shown up I was told I needed to make a follow up appointment with him. 

This was in addition to the pediatrician (today), surgery follow up (Tuesday), Pulmonology (end of June) and Gastroenterologist (which will be in 2 weeks but I wasn't able to make the appointment yet). 

So I call to make the appointment- it had to be at 8:45 am in Austin (20 miles away). Now I don't know if you know anything about Austin traffic, but dang. Also- the receptionist also made it very clear if I was 5 minutes late, Child Protective Services would be called. Apparently Olive's is treated as she could go blind within 24 hours, so her appointment is crucial. 

Got Olive's feeds caught up (since they got behind on the trip home... In traffic). Got her continuous feeds going at 11pm. Woke up and cleaned and switched it at 3am and pumped. 

Woke up at 6am. Got ready (if you can even call it that). My mom helped a lot getting Olive ready. Got her feed ready for on the way. Got her diaper bag ready. Oxygen tank, check. Out the door. 

Bam. Traffic. 

Luckily we used Google maps and it tracks the traffic and we made it with 10 minutes to spare! 

Cleaned her pump. Realized things I should have brought that would have made it 100x easier. 

Got home just in time to eat and pump. Out the door again to the pediatrician... With a feed going again, which messed up. Womp womp. Stopped it, fixed it, finished it.

Finally made it home, exhausted. Got Olive's feed ready, again. Then we all 3 took a short nap. Woke up to clean her feed. Had to catch her feeds up again, so they were almost back to back.

Cooked dinner. And now I'm writing this as I pump, again. 

In between I had to start setting up therapist consultations and discuss possible in home nurses. 

The two things I learned today:

1. Olive is the best baby ever. She didn't cry once today. She slept or just observed. She even was quite happy when she was awake. 

2. I have a new found respect for parents of special needs children. This is not for the faint of heart. Our position is temporary. She will eat eventually. She will be off oxygen soon. 

Those of you in it for the long haul: you deserve every vacation, free moment, massage, nap and so on and so on. 

I get it though. When I thought I couldn't take anymore, I would hear those tiny sounds. See those tiny hands. Or even better... Her adorable gum filled smile.

 All of the parents out there. Those who give up free time for soccer, dance, college prep and so on and so on.  

You keep going because of love. A love you can't even describe. 

For each of us, this is the life we are given. You do it for the joy that is set before you. 

"Therefore, since we are surrounded by such a huge crowd of witnesses to the life of faith, let us strip off every weight that slows us down, especially the sin that so easily trips us up. And let us run with endurance the race God has set before us. We do this by keeping our eyes on Jesus, the champion who initiates and perfects our faith. Because of the joy awaiting him, he endured the cross, disregarding its shame. Now he is seated in the place of honor beside God’s throne." (Hebrews 12:1, 2 NLT)

The Plan: An Update

I received the results and plan for Olive today, so I will try to explain it all to you as best I can. 

This morning when I arrived to the NICU, the GI nurse practitioner came to speak with me about Olive's pH test results. She told me that she was, in fact, refluxing. 

Here are two things that will help with what I am about to explain about the results:

1. Sometimes Olive has these coughing fits ranging just from a few small coughs to coughing until she's gagging. 

2. Sometimes Olive desats (drops her oxygen levels) or her heart rate. These are more concerning.

The correlation between coughing and refluxing was 100%. This is good because it means she's protecting her airways when she refluxes!

The correlation between desating/heart rate dips- only about 20%. Which is... Well. Hmm. It doesn't give us a clear idea as to why she's still desating and having heart rate dips. 

At first the nurse practitioner led me to believe that because reflux didn't seem to be the reason for her desating/heart rate dips, she may not need the Nissen Fundoplication (or a surgical procedure to wrap part of the stomach around the esophagus, this stopping reflux from happening). I was a little concerned with this because if it wasn't recommended, what would happen next to help her get over this hump? 

So she would just receive the g-tube, or surgically placed feeding tube that feeds directly into the stomach. The reason for the g-tube would be because even without reflux, Olive is aspirating and cannot take a bottle at this time. This was proven when they did the modified barium swallow study (see explanation below). 

Aspirating means it's not safe for her to come home due to many factors including the heart rate drops and desating. It also puts her at a higher risk for pneumonia. 

After further discussion, the doctor reviewing her study feels that the reflux was happening enough it is at risk of damaging her esophagus. Also, since she is having to work double to protect her airways (the coughing mentioned above), her lung development is at a stand still. 

There is a chance she can outgrow all of this, but honestly, it could be months (or even years) without intervention. Without her being able to take a bottle safely, she will need a feeding tube, and in order for her to come home, she will need the more permanent feeding tube rather than one that can be pulled out of her nose so easily. 

The positives are- there is high expectation she will come off of oxygen soon after. They have also said she can go home on oxygen if that is the only thing keeping her in the hospital! This means we may finally have a plan for discharge! After the surgery she may take a few steps back, but we know the accelerated steps forward will be more than worth it!  

We also won't know a specific date or timeline of discharge, but we will finally have direction whereas the past 2 months have been very up in the air. 

The things I will ask of you all is this- pray with us, but please don't send us information you googled about this procedure. It is something we were advised not to do from the beginning and it has kept us at peace about the decisions. We would rather pray and discuss with the various doctors. 

We do not have just one or two doctors helping us with this decision. We have an entire staff (nurses, respiratory therapists, neonatologists, specialists, nurse practitioners) as well as other parents who have already been through these procedures with their children. 

We also believe in the peace that surpasses understanding and will not make any decisions without having this peace. 

Thank you all so much for standing with us in agreement for Olive's full healing. We 100% believe for a miracle always, but are so thankful for medical miracles everyday! 

Nissen Fundoplication 

G-tube

*In a modified barium swallow, you ingest foods and liquids containing barium sulfate, a contrast dye that sharply outlines your mouth, throat, and esophagus on x-ray film. Using real-time x-rays, or fluoroscopy, a physician and a speech pathologist observe the movement of the barium through these structures on a television monitor. Modified barium swallow is specifically aimed at evaluating the swallowing process in individuals who have difficulty speaking or swallowing food without inhaling, or aspirating, it into the windpipe.