Force-Feeding and a Feeding Tube

As I mentioned in the previous post, Emma has had a lot of problems with eating. She has had bottles. Zachary had three bottles in his whole life.

Emma has fought me with eating. A lot. I mean, literally kicking and screaming and batting at the bottles.

Force feeding a baby a bottle can make your own insides hurt with empathy.

We have had lots of help learning how to feed her. We have held her in different positions and we have held her bottle in different positions. We’ve seen our feeding therapist many times, and had our friend, Melanie Ray, help us many times. I never knew teaching a baby to eat was something I would have to do.

I have tracked the amount she has eaten for more than half of her life. The other half I probably “should,” but I’m sick of it. Tracking the milliliters consumed has not been difficult, but rather sad. Seeing “suggested” volumes for babies and comparing those volumes to what Emma has consumed has been depressing.

Emma finally got a feeding tube on August 12. That’s right, a feeding tube. It’s one that I can put in. I just shove it up her nose and down her throat. It makes her gag when I do it. I hate doing it too. I feel bad for her.

She’s had the feeding tube so long that I think she looks so different when she doesn’t have it taped to her face. It’s like a person who wears glasses and takes them off. You’re just used to seeing the person with that apparatus on their face.

Someone—I don’t remember which health care professional—told me that babies who usually have a feeding tube this long usually get one “installed” through their tummy. I honestly won’t be surprised if the doctor we see on Monday suggests that type of feeding tube. I think I’m ready for it.

Follow-up to Zach’s Allergy Post

Mark and I just had an apple with peanut butter. As I was preparing it, I was thinking how sad Zachary will most likely never enjoy that. I love peanut butter and apples.

The other thought that came to me is something I’ve thought a lot about. When I was little, and I’d have a nightmare or feel sick, whatever reason I’d be up in the middle of the night, I remember sitting on my mom’s lap on the rocking chair eating a huge spoonful of peanut butter. That’s right, my mom, the rocking chair, and peanut butter. It must have been magic, because it is burned in my memory bank as a nighttime cure-all. Zachary will never get that magic cure-all.

Again, though, glad to know he has these allergies instead of trying to make him eat something that will make him really sick.

Milk and Calories

I have been pumping for Emma for six and a half months now. A couple weeks ago I decided to pump for Emma until she’s eight months old. I figure by that time I should have enough milk saved to take her to one year old.

For a while I was dumping milk down the drain. But, my friend had a heart to heart with me and suggested I save every drop I can. She said I should do it in case Emma never will or can nurse. Unfortunately, that looks to be the case.

When Emma was in the NICU, I started pumping for her. She had a hard time nursing at the beginning because she had such a hard time with the “suck, swallow, breathe” pattern. Now we know that Emma had a hard time with the pattern because she couldn’t breathe AND because she has been aspirating on the milk.

That’s right—aspirating.

Following her surgery, her anatomy changed. She had to learn again. And, she did, kind of. But, she still had such a hard time. She was still having a hard time breathing. She also never really had good swallowing mechanism. Turns out aspiration was a result.

So, for quite a while, since the end of July, since her first swallow study, I have been thickening her milk. People (babies) with dysphasia, problems swallowing, do better with thickened food—so the food “sticks” together when it is swallowed.

We originally used “Thick It.” That stuff is awful. It thickens breast milk too much at first and then relaxes and gets too thin. Never reliable.

Now we use a homemade thickener. It’s just water and xanthan gum. It maintains consistency. So, as far as her swallowing is concerned, it has been wonderful. As far as maintaining consistency going through her system, I hate it. It’s made her stools somewhat of a problem. Poor girl.

She hasn’t nursed since the middle of June. I’ve been really sad about not getting to nurse her. Very sad. But, as mentioned above, I’ve been pumping. I am a firm believer that breast milk is best for babies. Not to mention, I choke every time I see the prices on baby formula when I go to the store. I’m soooooooo glad I never had to buy formula for Zachary.

We had had to add extra calories to Emma’s milk since the NICU. She just isn’t growing like she should be. In the NICU, we started adding formula to her milk. We did that for a long time. We’ve tried all different kinds of formula, even two that you can only get by prescription. I don’t really notice a difference. She hates the taste of all of them.

The Thick It did add extra calories. But, since switching to xanthan gum, the calories in the thickener have been negligent. So, we add extra calories in her oral feedings with microlipids—which area also only available by prescription.

Each day I make her “potions.” I make four bottles with milk, xanthan gum, and microlipids. I make four bottles of milk and microlipids. She takes one bottle orally and one pumped through her feeding tube four times a day.

Her evening potion is a bag filled with milk, microlipids, formula, and vitamins.

I want her to be able to keep down all these calories, but too often she throws up. It is getting really frustrating to not have her grow like she should when I’m literally counting her calories to help her get enough each day. I really hope the gastroenterologist can help us this next Monday.

November 4

Pants on the Head

Why does this never get old?

Zachary's Allergies

There was one week this summer when Emma had three appointments. One of the other days that week, August 10, that she didn’t have an appointment, we still ended up going to Primary Children’s.

I met my friend at the Gateway Mall fountain. She had had a baby girl the week before Emma was born. This would be the first time I got to see her baby and she got to see Emma. It was a beautiful day. There were lots of people at the fountain.

I took a bag of pistachios to snack on. Zach saw me eating them, so he wanted one. Of course I offered him one.

He chewed it up and said, “Hot.” I was confused. He acted like it hurt his mouth—like he bit his cheek. I started watching him and he acted strange, but not too strange. He kept playing. But he would come over to me now and then and tell me it was “hot.”

I tried to look in his mouth. I couldn’t see a bite mark. I also couldn’t see any swelling, so I didn’t think that he was allergic to it. Not to mention, I swear he’s had nuts before.

He finally came over to me and sat on my lap. He was not well. And then he threw up. And again. I still couldn’t see swelling.

I called our pediatrician’s office. They said if we could get there in 20 minutes, to come in. Otherwise, we should go to the emergency room. They said to ask the other moms around the fountain if anyone had any Benadryl.

I finally started seeing on Zachary’s cheek, just the right side of his face.

I didn’t know what to do about the throw up.

My friend walked around asking the other moms if anyone had any Benadryl. She finally found one lady who said she had some Benadryl tablets in her car. I told her I would go to my truck and that my friend could bring me the tablets while I was packing up my kids.

While I was trying to get to the truck and put the stroller in, my friend came up to me with another lady. This lady happened to have a bag of medicines, including children’s liquid Benadryl. She just happened to be a pediatrician. She told me that if Zachary was her son, she would take him to Primary’s right away. Angel.

Well, that sure didn’t make my decision hard.

My friend found someone to clean up Zachary's throw up. Angel.

Zachary threw up two more times in the truck. And the right side of his face kept swelling.

He fell asleep on the way to Primary’s—and it FREAKED me out. I couldn’t hear him breathing, and since he wasn’t awake, I couldn’t tell at all.

When we got to Primary’s, there was hardly anyone there. So we got to back quickly. Miracle.

By this time, Zachary’s swelling had started going down. It never got freaky big or anything, but it was apparent.

Melanie Ray came down after I texted her to tell her I was there. Angel. She is one of my angels. She got some formula for Emma to eat since I had NOT planned on being away from home long enough to have to feed Emma again. And, thankfully, Emma ate it without fighting me. Small miracle.

So, two weeks later, I took Zachary to see an allergist.

Oh. My. Word.

Zachary is allergic to peanuts, all nuts, grass, trees, mold, dogs, and cats. I had NO IDEA. None. I mean, he’s never wanted to eat peanut butter. Or apparently, it must have made him sick. Great…. I’m just glad I never forced him to eat a peanut butter sandwich when he hasn’t “wanted” to eat it.

Now we have to carry EpiPens with us. Two EpiPens. I also have two in our kitchen. Those things are expensive too! Without insurance, they each cost like $100. So, four of them? Yah. Ouch. But we only had to pay $60 for all four of them.

Neurofibromatosis

Wow, I can’t believe I haven’t even posted about Emma’s other diagnosis: neurofibromatosis. Big word, right?

Well, our regular pediatrician was out on maternity leave for a while. So we were going to see a couple of the other peds in the office. On June 24, one of them noticed Emma has a lot of birth marks. They call them café au lait macules (CALMs). It’s not really common to have as many as Emma has unless the person has neurofibromatosis, or NF1. She gave us referrals to go see a geneticist and an ophthalmologist.

We couldn’t get in to see “our” geneticist until July 20. But that was actually really rare that we got in that quickly. We would have had to wait until November 27, but I just scheduled with the next available geneticist. Usually, the “next” available appointments are about four or five months out—seriously.

Our appointment with the ophthalmologist was scheduled for September.

When our pediatrician gave us the possible diagnosis of NF1, she wrote the name down and sent me home with these words of advice: “Don’t freak out when you google it.”

Riiiiiiiiiiiiiiight.

So, with NF1, there is a vast gamut of possible issues. It goes from nothing more than CALMs and other skin bumps, to in the worst case, death. Also included in that array: bone problems, cancer, tumors, loss of sight, learning disabilities, poor muscle tone.

We all seem to believe that Emma’s NF1 in combination with her laryngomalacia (even though aided by surgery) are preventing Emma from growing normally. Yes, Emma is barely growing at an adequate rate. I will write more about that later.

So, because of Emma’s NF1 diagnosis, we have had an MRI done on Emma’s spine and brain to see if there was any tumor or neurofibroma visibly causing eating problems. We will have some x-rays done on her legs to see if she is bowing abnormally. We will have to see the ophthalmologist every year. We will get to know our geneticist better through regular visits (now every three or four months, hopefully once a year in the future).

We also discovered, because of Emma, that Mark has NF1. That’s where Emma got it. Mark has had no problems with his NF1. But it means that if/when we have more children, we will know there is a 50% chance they will have it.

A Real Brief Catch-Up

I know it’s November. I know there is a lot I could have been posting on our blog, but I haven’t made the blog a priority. There have been too many other needs that I have had to meet. These needs have included:

• Emma
• Mark
• Zachary
• Me

That’s probably the order too. I don’t mean for this to be a whine session, but there are a lot of feelings I want to record.

Emma has been hard. At our last doctor’s visit, our pediatrician said the words I have officially been trying to avoid: special needs. Gratefully, Emma’s special needs are physical and not mental. But, nonetheless, I am worn out. Seriously. I have a binder of Emma’s doctor’s appointments.

• 20 days in the NICU
• 3 well child checks
• 13 weight checks
• 7 specialist appointments
• 8 tests
• 12 therapy sessions
• 1 surgery
• 2 in-home health care visits

I think that’s it. That is 46 appointments in her 29 weeks of life. Or 26 appointments in the last 26 weeks. We have four more appointments already scheduled. I just recently had a week without any doctor’s or therapist’s appointments for anyone—and I didn’t know what to do with my time. Mark said, “If you didn’t have appointments, you wouldn’t have any social life.” Sad, but true.

Mark has taken such good care of us. Like—mega good care. But, there are a lot of things that he can’t do and a lot of things he doesn’t understand, simply by not being able to do everything. He rarely goes with us to doctor’s appointments because he needs to work. Emma won’t take a bottle from him, so he doesn’t have to fight her. Those are just some examples.

And poor Zachary, he has been such a good boy. I am so grateful he’s a good boy. He’s given us problems and scares too, but overall—such a good boy. I will write about him as well.

Then me. Well, I’m exhausted. Not because I don’t get enough sleep. Mark lets me sleep in as often as possible. I get an average of eight hours a night. Dreamy—right? Well, that typically is enough for me. But I’m exhausted from stress. I eat everything I can get my hands on, and I’m still losing weight. I currently weight 135. It’s creepy. I’ll write about it.