The Things People Say

The Things People Say

This week is Feeding Tube Awareness Week. In honor of that, I have been trying to educate those around me.  I asked a number a group of caregivers (parents/grandparents/foster parents) to share some of their stories with me. Today’s topic is about the things people say to us and to our children. Even when people mean well, their words can be incredibly hurtful. These things have been said to us by strangers, family members, friends, and medical professionals:

  • “Have you tried letting them get hungry?” or “If you just stopped using the tube I am sure they would get hungry enough to eat.”
    • Many parents posted versions of these two comments. Some of us (myself included on this one) watched our children almost die because medical professionals didn’t believe us that our child wouldn’t eat. They don’t necessarily get hungry,or when they do, our children don’t eat enough to survive. If it was that simple, they wouldn’t have a tube.
  • “Did you try breastfeeding?”, “So you don’t breastfeed?”, or “If you just breastfed your child wouldn’t have ended up needing a tube.”
    • Breastfeeding is a VERY sensitive topic for this crowd. I think I can safely say that almost all of the moms who were able to tried to breastfeed. If we couldn’t do that, we at least tried to pump to give our children breast milk. Some of the moms spend months pumping. Some, like me, had no choice but to switch to formula. We all feel like the whole “breast is best” thing has been shoved down our throats, and we feel incredibly sad and guilty that we did not to experience that with our children.
  • “Have you tried giving them _____?”, “I had a picky eater. I gave them _____ and they started eating.”, “I bet I can get your child to eat.”, “If you just gave them kid food, they would eat.”
    • Don’t you think if it were as easy as giving them a different type of food we wouldn’t have ended up with a tube?
  • “So when are you taking out the tube?” or “Can you please remove the tube for family pictures?”
    • For most of us, we have no idea.  The answer may be never. That is okay. Our child is here. Isn’t that enough?
  • “This is disgusting. You shouldn’t be doing that in public.”, “Can you please feed your child at home, before you come over?”
    • I was amazed at how many parents said they had heard this when feeding their child in public. Breastfeeding moms, you are not alone.
  • “What is wrong with your child?”
    • This is one where I know people mean well and are curious, but there is a better way to say this. One mom explained perfectly why this is so hurtful.  Her daughter is a little older and when people say this her daughter hears, “something about me is bad/wrong.” These kids already know they are different and many struggle with confidence. Instead, you can ask the parent or child what the tube is. You can ask why they have a tube (many people are more than happy to educate about their child). Bonus points if you throw in a comment to the child -if they are older- like, “I bet that tube helps make you big and strong!” Make it a positive thing, not a negative one.
  • “The tube is just such an inconvenience.”
    • This “inconvenience” saved our children.
  • “I wish my kid had a tube. It would make dinner time/giving medications/etc. so much easier.”
    • There is nothing easy about having a tube and none of us have a happy story about ending up with one. Also, there are many other things that come with tubes: reflux, vomiting, chronic constipation or diarrhea, etc. While tubes have saved our children, we do not wish this upon anyone. Although, a little piece of me does recognize that it is nice that my 9 month old does not spit her many medications back at me.
  • “I will pray that he/she gets better.”
    • This is one I personally do not have any experience with, but a number of parents posted it, so I am sharing. From what I understand, their problem with this comment is that, in the parent’s eyes, the child is just fine how they are. They are happy and loving kids who are just different. Some of them won’t “get better” because they have a genetic disorder. There is no cure for genetics.
  • “Your child looks so healthy. Are you sure they need a tube?”
    • The tube is why they look healthy.
  • “I think the tube is just a crutch.”, “If you just took the time to feed your child, they wouldn’t need a tube.”
    • Yes, we are such lazy parents. That is why we never sleep more than a few hours at a time(feeding also happens all night for many of us), we are always running to doctor and therapy appointments, we spend days in hospitals/ERs with our children, and hours researching/asking other parents for solutions to challenges we are having. Yep, that’s it. We are too lazy to take care of our kid…
  • “If she eats by mouth, why do they need a tube?”
    • Some kids, like Lyra, simply don’t eat enough. They are working on it, but until then, they need a tube. Also, some kids have medical conditions where they need medications that only work correctly when delivered directly into stomach or intestines.
  • Saying nothing at all and just staring.
    • Our child is not a sideshow. Either ask us a question or stop staring.

Okay.  Enough with the negative stuff.  This isn’t everything, but you get the idea. Here are some positive things to say, especially if you are curious:

  • “Can I help you? Do you need an extra set of hands?”
    • Especially when something is going wrong during a public feeding, this is SUCH a blessing. You have no idea how much it would help to have an extra set of hands when setting up a feed in public. Most of time I end up feeling slightly frazzled when doing it, so I would love it if someone offered to keep something from falling/spilling.
  • “What is your child’s story?”
    • The vast majority of us are happy to educate you about feeding tubes and how our children ended up with them. Our kids are little fighters and we are proud of them.
  • “Is it safe for your child to eat by mouth?” – “Do they eat anything by mouth?”
    • This is always a great question before offering a child food (like at a family dinner). It’s just respectful and keeps everyone safe/happy.
  • You are allowed to be curious. Just ask us about our children. Like I have said before, we are happy to educate.

 

 

Fed is Best… and Beautiful

Fed is Best… and Beautiful

I have finally found a community of moms/parents I can share stories, ideas, and challenges with. It is a virtual group: a page on Facebook. But it is my lifeline and a place of comfort. Today a mom posted that her baby just came home from the hospital and part of her is devastated that her baby is tube fed. How brave of her to post what ALL of us have felt/are feeling. We all had hopes, dreams, and plans for how we would feed our babies. I wanted to be a strict breastmilk mom. While pregnant, I dreamed of bonding with Lyra while breastfeeding her. It was going to be my selfish time with her. Something only I could give her. While I was able to pump for 2 months and at least give her breastmilk, it ended up being that my milk was not what was best. As I have written previously, I was heartbroken.

Not being able to give my daughter a bottle. Praying that she keeps her formula down. Being covered in puke for the third or fourth time in a day. All of this has brought me to tears many times. All of the parents I have exchanged with in this group have been there, or are there. Some days are easier for me, and some days just suck. These people have helped me see one thing: Fed is best.

While this term has been used most recently to try to calm the formula vs. breastmilk and bottle vs. boob battles, it has special meaning to tubie parents. While part of us will always feel sad that this is how we have to feed our child, we also become overjoyed that we CAN feed our child. Because of these tubes, our children are with us. As tubie parents, we should take pride in the time and care we put into feeding our children. We know EXACTLY how much they have had to eat that day. We carefully measure each drop and monitor every bag, bottle, and syringe. We lovingly mix formulas to exacting calorie counts, prepare blended diets, or do a number of other things I don’t even know about yet because Lyra isn’t there. We lose sleep over feeding EVERY SINGLE NIGHT. We should take pride in everything we do to feed our little ones because FED is best. It is also beautiful.

So here is to my tubie family for helping me see the positive, and understanding me. Thank you for sharing your stories and your photos. Thank you for giving me your time and support.

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Lyra being fed at night back when she still had an NG tube

Dealing with the Trauma

Dealing with the Trauma

Trauma is not a word that I like to use, but in this situation I can’t think of a more appropriate one to use. Also, I am not always sure how well I “deal” with it, but I do live with it. The fact of the matter is that my husband and I are traumatized by everything that has gone on. I don’t think a day goes by where I don’t think, at least once, “Am I going to have to take her back to the hospital?” Sometimes this thought occurs because the future is so unknown. Sometimes I have it because we are having a bad day. But, the thought is always there.

There are defiantly some triggers for both my husband and I. The two that come to mind are a poor PO (from a bottle) feeding, and throwing up. When Lyra is only willing to take a small amount from the bottle it flashes me back to desperately trying to get her to take just a little more, and knowing that it wouldn’t be enough to sustain her. Now, I know that she has the NG tube now and she WILL get the nutrition/calories that she needs. That doesn’t stop me from remembering being in tears and begging my baby to “just take a little more” because I knew her tiny body was in desperate need of calories and hydration. It doesn’t stop me from remembering how helpless I felt when I would bring the much needed bottle to her mount, only to have her scream and refuse to suck from it. Most of all, it doesn’t stop me from remembering how defeated I felt when she threw up what little we had managed to get in her.

Throwing up is the other major trigger.

Now, she does still throw up. I get that all babies throw up from time to time, but when you have a failure to thrive baby with a history of feeding issues, it can induce an anxiety attack every time it happens. When she throws up now, all that I can think is:

“What did I do wrong?”          “Did I move her too much/too quickly?”          “Did I push her to take too much from the bottle?”          “Did I start the NG feed too quickly after the PO feeding?”          “Is the NG feed too fast?”          “Did she get enough?”         “Will she keep her next feeding down?”

“Will I have to take her back to the hospital”

On and on and on…….

Now, I know that not all of these thoughts are productive. Sometimes, I did nothing wrong at all. But that doesn’t stop me from thinking some (if not all) of theses when it does happen.

The other thing I struggle with is hearing her cry, especially in fear and/or pain. I know her cries for fear and pain very well at this point, and sometimes I hear them when they aren’t actually happening. Knowing that she isn’t actually crying is a big reason why I don’t like to be in a different room than she is, especially when it comes time to sleep. Even if I am taking a nap and my husband is home, holding her, I swear I will hear her cry and it will send me vaulting out of bed. Tonight was a great example of what I struggle with.

Lyra was fussy most of yesterday (plus she threw/spit up three times). For the midnight feed she did not want to calm down and was very upset through much of the NG feeding. Sometimes, if she is too upset during the NG feed, she throws up. So, my husband and I spent the 25 minutes trading off trying to calm her down without picking her up or accidentally having her gag on her pacifier. Finally, we got her to fall sound asleep at the very end. Rather than risk waking her up in the transfer to her bed in our room, we decided to leave here in the nursery with the video monitor on. Laying in bed, I could swear I heard her crying. I could hear it building into real distress. Opening my eyes, I looked at the monitor only to see her still her peacefully sleeping always. However, even with my eyes open and watching her, I swore I could still hear it. Moments like this make me feel crazy and are hard to acknowledge and talk about, but they happen. I know why the fear is there and the moments that caused me to develop such anxiety about those two types of crying, but knowing and controlling are two very differently things.

For now, we are dealing with our trauma the best that we can. For me, I have to keep reviewing the signs that tell me that she is okay. I also try to find tools, like the monitor, to help show me that she is okay. When I start to panic, or fall apart, about some of this, my husband tells me what I can’t tell myself. I do the same for him when he starts to lose it a little. Right now, we are still a team.  We try to recognize when one of us needs a break to regroup, or words about what is different (and so much better) about having her home this time. At this point, we have had her home for the longest period of time yet. As the days go by, I hope the anxiety will decrease. But for now, the best I can do is admit it is there and deal with it by using the few (but powerful) tools that I have.

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Lyra’s first 4th of July.

Pink, white and blue was the closest I could get with the cloths that fit her.

Adjusting to being Home

Adjusting to being Home

So, Lyra is finally home. The sent us home with an NG tube so that we don’t have to worry about her not taking her whole bottle. While she has been making progress with eating, she still can’t seem to take the whole thing by mouth. She also still throws up occasionally.  I bet that the occasional throwing up wouldn’t both most parents, but for my husband and I, it makes both of us panic.  We are both truly traumatized by watching her throw up feed and after feed. Some days, as we fed her, we would silently pray that anything we gave her stayed down. While she now only throws up once every few days, it still makes my heart sink into my stomach.  I can’t help but think, “are we going to have to go back to the hospital? Is she going to be okay? What did I do wrong this time?”.  I just want my baby girl continue to grow. She is over a month old and still fits into newborn clothing. While this may be normal for premies, she was full term. At least when she was weighed before we left the hospital she has finally crossed into the 8lb range. Maybe being home won’t feel so terrifying one day. For now, my husband and I are just doing the best we can to keep our cool.

Truly Humbled

Truly Humbled

Todays post is more of that thank you. I am truly humbled by the amount of support we have received from friends, family, and even strangers. My family has been incredibly supportive, despite the fact that they can not always physically be here (the live on the other side of the country). Our friends, both locally and otherwise, have also been wonderful.  Two of our friends have been taking care of our dog (our first born) for over a week. We asked them to watch him for one night and they have taken care of him ever since. The words of encouragement and offers to help out with anything/everything have been greatly appreciated. My husband and I are not always the best at accepting (or asking for) help, but we have learned to embrace what has been offered.  Beyond the friends and family, I am humbled by those who I do not even know who have reached out and shared their stories and kind words. All of this reminds us that, although we are experiencing challenges we could have never prepared for, we are blessed. From the bottom of my heart, thank you all.

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Tyke and Lyra when we first brought her home

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Our first Father’s Day

One Step Forward, Two Steps Back

One Step Forward, Two Steps Back

It’s funny how you can go through a whole day feeling so positive, only to have everything turned upside down by a single number. When I came in this morning we found out that Lyra had lost a little bit of weight. The doctor increased the amount of milk she is supposed to take and we moved on with our day. Throughout the day she did great. She was taking more orally than she did yesterday and she didn’t have any trouble keeping down the extra volume pumped in via her NG tube. Her personality was also coming back today today. She spent a long period of time awake and checking out the world. We spent much of the day just looking at each other and making faces. She even did a little tummy time in her crib. With all of these positive indicators, I decided to stay until she was weighed again. I was really excited. We had done everything right today and she looked great.  And then the numbers came in….. 3.445 kg  (7 lb. 9.2 oz). It is a full oz less than she weighed yesterday.  She should be gaining an ounce per day, not losing it.

I just don’t understand. We are doing everything right. The surgery fixed the laryngomalacia. She is eating more AND keeping everything down. I am actually eating regular means and most of them have solid nutritional value, so my milk should be okay. I make sure to eat protein, fresh produce, and fats. Her reflux seems under control…. I just don’t get it. What are we doing wrong?  She has to do two things to be able to come home: 1) Consistently eat and keep her meals down, 2) GAIN WEIGHT. With the NG tube we have #1 taken care of. I don’t know how we will fix #2.  I don’t even want to go home tonight and see my apartment full of my baby’s things, only to know that I have no idea when she will be home again. I just want to be home and sit on my couch with my baby, husband, and my dog.