Home 22q11.2 Feeds with Izz

Feeds with Izz

by Summerly Rowlands

From the start, feedings with Izzy have been challenging. However, in more recent times, they have also been rewarding seeing her progress. We know with her diagnosis that she will likely be small in stature, but regardless of her percentiles in weight and height, she is following her own growth curve and remains very proportionate.

Before Izzy’s hospitalization, she was breast fed and bottle fed. We trialed and errored with more formulas than I can remember. Once she was hospitalized and had to be tube fed, breast feeding & pumping was out the window, and although she eventually was taken off the tubes, she remained 100% formula & bottle-fed. I personally have no issues with this – I believe strongly that fed is best, not breast is best. But damn, when I was able to, I tried. And I tried. And I tried. To the point of exhaustion. My body does not produce very much milk (if any at all sometimes), my breasts were never engorged (which from what I hear, I think I lucked out there 😅), I never had the “let down” as they say, and I knew my breastfeeding and pumping could never be the only source of food for my baby… but I still tried. For all mommas out there who struggle in this area, I know how draining it can be – physically, mentally, and emotionally – and all I can say is get you a support person like Sterling. When I would get frustrated or discouraged or angry, he would be there to tell me to take a break, to do whatever I felt I needed to or wanted to for Izzy, and to not give up if it’s important to me… and at the time, it was. But I digress… as I said, fed is best, and for our girl, that ultimately meant tube fed and then solely bottle & formula fed. Truly I have zero regret or guilt about any of it because it was all necessary and life-saving. Plus – look at her now!

[Another struggle though… reflux. What a bitch. Every feed was a throw-up. No exaggeration. Whether it was instantaneous or 2 hours later. Every feed was also a “hold upright for 30 minutes” to help her digest… and that didn’t help. Besides food, she was also refluxing her medicine… which deserves its own post in itself… She was crying, I was crying, I wholeheartedly thought the reflux phase would never end, that her and I would just live our lives covered in vomit. Due to Izzy’s aspiration at the hospital and her code blue, we were actually told *not* to do ABC with her. ABC stands for alone, back, crib for when a baby is sleeping. Our doctor told us they had never told anyone not to do that before, but with Izzy it was too dangerous because we never knew when a throw up or a choking incident may occur. Her horrendous refluxing went on from July through mid-October. I have no idea what stopped it, but I am thankful every day for that miracle. We began putting Izzy in her crib to sleep by herself on December 17th (I think that date is forever etched into my brain), but we still lay her on her side with her head elevated… and I still get nervous every time she coughs. 😪 From time to time, she does still have a reflux episode, whether it’s coming out of her mouth or her nose, but I just catch whatever it is right there in my hand, and we move on. #momlife]

When we were discharged from Akron Children’s after her 18 day stay, the formula we landed on was called Similac PM 60/40. It was a phosphorus-free prescription formula since one of her symptoms within her hypoparathyroidism is high levels of phosphorus in her blood. The double edge sword to this was that the PM 60/40 was also low in iron, so if a child is on this long-term, then they need an iron medication or supplement to counteract. Luckily for us, we didn’t reach that point.

The struggle with using Similac PM 60/40 is the availability to get it. The only pharmacy around us that carried it was Walmart of all places (and only one Walmart in the area at that), and we would have to call in and order it prior to needing it. We would buy it in bulk to make it easier, and though the prices were not bad, we now have a stash leftover because we were able to stop using it… after we made one of our bulk orders. (Hey, if anyone needs some Similac PM 60/40, let us know 😉)

In addition to the formula, Izzy was given Duocal and protein in her bottles for added calories and thickness. Duocal is a high calorie, protein-free powder made up of carbs and fat that can be added to foods or beverages when additional calories are needed to gain weight. It is NOT a formula and should not be used as a sole source of nutrition. With Duocal being protein-free, we also added in protein powder – and yes, it was the same protein powder that some grown men/adults use. The protein aspect didn’t last long, as Izzy’s body rejected it, but the Duocal stayed with us a while.

Feedings were very stressful. They were stressful when I was trying to produce milk, they were stressful when we were trying to find the best fit for a formula, they were stressful when she had tubes down her nose, they were stressful because of all the reflux, and they were stressful because we were trying to hit daily ounce goals… which we never did. (It wasn’t until she was 8 months old that she finished her first 4 ounce bottle EVER in one feeding, although that was a dance party moment!) Working with Izzy’s nutritionist was, and still is, very helpful, but at the beginning, it caused a lot of mom anxiety. A major goal of Izzy’s is to gain sufficient weight and we just weren’t getting where we needed to be. Izzy is on her own growth curve due to her diagnosis and she has calculations of how many ounces and calories she needs per day. Although she is staying on track now (for the most part), she was not at first. I felt like I was being tested and failing every time we went in for an appointment. Izzy was either taking her bottle and throwing it up or just not taking it at all. But we kept going… obviously there was no other choice. Since July 20th, 2021, actually 10 days before she was discharged, I have been keeping a feeding diary in the notes of my phone. I document every single feed – the day, the time, the amount, any additives, and any reflux. It is time consuming and a bit redundant, but it is extremely crucial and beneficial. I can look back and see that Izzy started her PM 60/40 on 7/25/21, she started Duocal on 7/30/21 (the day we were discharged), she started protein powder on 8/3 and stopped on 8/4, then started protein again on 8/31 and stopped again on 9/7, she started Similac Sensitive on 10/11, and stopped Duocal on 10/19. ((October was a glorious month for us.))

Once Izzy’s calcium & phosphorus levels were stable she was able to switch from the prescription formula to regular Similac Sensitive, and that’s what she’s on today. We can now feed her in a typical bottle-feeding position, but we do tend to keep her in “sideline”, which we started at the hospital to normalize her breathing. Sidelining is exactly what it sounds like. She lays on her side to take her bottle; we always lay her on her right side, as this helps the milk digest to her stomach easier. We also use a boppy for this – although there have been times where boppy wasn’t available, so I literally just held her body sideways as I fed. One hand supports her neck & head & that arm supports her body, while the other hand is feeding the bottle. Like I said, we are now at a point where she *can* eat in a typical holding position, but I do think that sidelining brings her more comfort and familiarity. So we stick with it 🙂 S/O to speech therapy for the sideline trick!

As most parents know, formula can be extremely expensive, and you have to buy it on a frequent basis. Once Izzy was transitioned to Similac Sensitive, I felt a sense of relief because I thought it would be easier to find than ordering her prescription formula… However, we are now facing a recall on Similac products and most stores have stopped supplying it. I have felt nervous to try anything else because of all the issues she has had with feeding, but I got word today that Similac Sensitive is almost the same product as both Enfamil Gentlease and Gerber Soothe, so we are free to try those, and they should be on all the shelves! ALSO – most grocery stores have generic brands of Similac products, and those are okay too! Not to mention those prices are WAY better!**

And then there’s the excitement of trying baby foods, baby snacks, & real world flavors!

When Izzy was 4 months old, her GI had us begin the introduction to baby foods. This didn’t go overly well because she couldn’t figure out how to swallow food off of a spoon, but we did start adding baby foods and baby cereal to her bottles… which I termed as her “baby food milkshakes” 😊 Izzy now takes almost all of her bottles with food or oatmeal in addition to her formula, but she’s also WAY better at spoon feeding. And I felt WAY better after we met with her nutritionist and speech therapist back in January when they told me that Izzy not being able to spoon feed at 4 months, or even 6 months, was totally normal, as babies that age do what is called tongue thrusting, an expected and natural oral reaction to avoid choking. So Izzy pushing food out instead of swallowing from the spoon was not alarming like I had thought; it typically isn’t until 6-8 months when babies start to learn how to use their oral muscles for more solid foods. And at 8.5 months old today, she’s doing great! She’s exploring lots of flavors and textures, which is exactly what she should be doing, and she’s got the concept down of opening for food, taking off spoon*, and swallowing!

*Izzy’s speech therapist introduced us to a couple feeding tools which have helped tremendously. I would honestly recommend them for all babies who are starting to spoon-feed, but especially those who may have some trouble with it.

The first tool is a Dr. Brown’s flat, spatula spoon. Regular baby spoons can be too deep or rounded, making it harder for the baby to get the food into their mouth like it was for Izzy. I learned that it’s actually not good to push a spoon into a baby’s mouth and/or “scrape” the spoon on the upper lip because this puts a ‘dallop’ of food on the tongue and can cause gagging. Here is the link if you’re interested!

The second tool is more of a “toy” and it’s called a Chewy Tube. It’s shaped like a T and it’s great for teething, but it’s also the perfect shape to hold and explore foods with. We dip each end of the T into baby food or sauces and Izzy is all about holding it and playing with it and sucking food off of it. Here is a link if you’re interested!

It has been SO fun having Izzy try new foods, and she LOVES it! I honestly had no idea the variety in which she could have! When her speech therapist gave me this list, I was super excited! (Only thing to note is that NO baby should ever have honey until 12 months of age – it can cause infant food poisoning due to a specific bacteria!)

At almost 9 months old, we only have about 3.5 more to go with formula, and then it’s on to whole milk, and our taste testing is only going to grow! Just like Izzy! Today, even though she floats in-between the range of 1st percentile to 5th percentile for her weight and length, we hit the big milestone of doubling her birth weight! She was born on July 1st, 2021 at 6 lbs 15 oz, and today on March 16th, 2022, she clocked in at 14 lbs 1 oz. We figure she might always be small, but she’ll also always be mighty, and today was a mighty good day for her! 💗

**Update: We did a trial run with the Gerber Soothe. She made it through 5 bottles on 3/22, but then had a terrible reaction that evening. Izzy began projectile vomiting out of her mouth and her nose. It came out of nowhere and was pretty nonstop. She was falling asleep on me, thank God I hadn’t laid her down for bed yet. When this happened, I sat her upright immediately and screamed for Sterling. Thankfully she was okay after she got it all out of her, but those moments are still scarring, seeing her have trouble breathing and starting to shake. She eventually fell back asleep with me and I did put her in her crib. She was good throughout the night, waking up a few times because she was hungry. Sterling had gone to the store after she had her episode and luckily found a canister of Similac Sensitive. Due to the recall, we have to check the lot numbers when we do find cans of the powder, and this one was said to be safe. Here is the website to check your Similac products!!! https://www.similacrecall.com/us/en/product-lookup.html We’re watching Izzy closely today as she eats and taking it a bit slower than usual. It will be so nice if and when her feeding reactions completely disperse… I don’t think we’ll be trialing the Enfamil…

Goodnight, sweet girl. 🤍

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