I should have explained the underlying reason for my worry, especially in regards to Elijah's recent lack of interest in food. When you have a baby with health problems, things like poor eating can be very stressful and worrisome. Loss of appetite can be one of the first signs that something is wrong with the heart. Almost every heart baby experiences this at some point.
In fact, most heart kids have or have had a tube that goes straight into their tummies to feed them. My good heart mommy friend Samantha's Baby Micah has a heart defect and he just stopped eating one day. He went months and months with eating very little food. He actually was starting to starve and stopped growing. He ended up getting a g-tube so he could be fed without having to consume food. Thankfully, Elijah has never had this issue, but the fact that he's one of the few heart kids who has not had a g-tube reminds me that he's not immune to the possibility. When he refuses food for an entire day, my mind drifts in that direction.
The state of his heart always lingers in the back of my head, with every little variance from the norm we see in him. Am I alone in this? Moms with heart healthy babies AND heart babies, do you worry more about your heart babies?
I feel like it's not quite as easy to follow the standard guidelines on parenting when a heart kid is involved.
12 comments:
I couldn't agree with you more... When raising a child with serious medical problem we have to look at everything as a possible symptom... when Chase relapses eating is the first thing that he stops doing. You're doing a great job! Hugs!
I certainly worry more about Vaeh than Gabby!! Especially in the eating area. We were 'encouraged' for so long to push calories at her to "fatten her up" for surgery. Now that she's finally G-tube free, I still find myself worrying that she's now getting too skinny. She was always such a chubby baby.
Its not just the eating that makes me worry. Any time she doesn't breathe right, my mind begins to race into thinking 'what's wrong now...' So, you are NOT alone in the worry dept. And I have one of each! (heart healthy & a CHD survivor)
You're in good company here, Megan! We can have a worry party together! Give E a big hug from all of us!
You're SO right Megan. I worry far more with my heart baby than with the older boys.
Unless you've walked in our shoes...it's hard to understand where all the worry comes from. Most people don't have to sit in the hospital, watch their child try to recover with their chest cracked open, unable to breathe on their own...and wonder if they will recover. SO...YES...we worry about every single little thing that isn't their "norm". Not only do we have the task as parents to teach them and prepare them for the future...it's our SOLE RESPONSIBILITY to keep them alive. That may sound silly to "normal baby" moms...but, until you've had a blue baby on your hands...you have no idea!
So...when Mr. E doesn't eat..you worry, you ask us all questions. You call the ped. It is a big deal. If they don't eat...they don't grow and develop (ie..Isaac).
there.
hope that wasn't too harsh. But..never apologize for worrying about your butterball...I'd worry too!! (I worry when Isaac doesn't eat..and I have the darn tube!)
You are so right on and amazing mommy!!! Which is why I gave you an award!!!! go pick it up :0)
Natural instincts, protect your baby!
What does it mean to be the parent of a heart kid??
http://www.babyheartspress.com/art/poster2.jpg
THIS SAYS IT ALL!!
Matthew is 3 1/2 and still is fed by g tube and only nibbles a little bit.
Yes, we do have more to worry about... everything seems to affect everything....
geez, even the retching that Matthew and baby Isaac experience could be because of the pulmonary artery pressing in their esophagus.. sp??
I don't have another one to compare. Just among my friends I know that Evan concerns even them more in some ways. I don't think every Mom runs to her child at the playground b/c she saw a glimpse of his face and his lips looked blue to check his nailbeds. This happened recently and the other Mom's were like, huh? I could go on but... we all know. I've read and I listen to other heart Mom's and I know the things our kids deal with - when I see signs in Evan I go to full worry in an instant. Things change with these kids and sometimes quick, we have seen that happen and it could be us. Heart Hugs to you my friend. I'm a serious worrier... I worry about Evan and every one elses little ones too. God choose us to be Mommies to these special little blessings.
I am so there (obviously since you spoke of Micah). There is no comparing how much more I worry about him over the older two kiddos. My older two are able to fight infection and illnesses without their heart giving out. After hearing that your child is going to require one or more surgeries on their heart where they may or may not come out of, you worry.
I never in a million years realized that I could worry more than I did before Micah was born...then I heard that his heart would be broken...I have not taken a breath since then. I never truly understood the words "I just want a healthy baby" until I was told mine would not be healthy. I say this because if you have been BLESSED to have a healthy child, you do not think about the possibility that your child might not wake up in the morning, you do not worry about the breathing or if they look a little blue...you worry, like I use to worry about my older kids, but you CANNOT understand that worry until you have been told that there is a chance that your child will die. I mean, how does a parent ever move past that moment in time? We can find ways to feel better and enjoy the wellness when our child is doing well...but we will ALWAYS worry...there is no cure for these defects...there are fixes, but they have to be continually fixed, time and time again. My baby has had his heart cut into two times (when he was 3 days old) and I have no idea how many more times this will happen...let alone when that is going to happen.
When our babies stop eating, start breathing funny or even do some random thing (like breath holding, which turns out to be seizures) we worry.
I know that I have written a short novel here, but I am very sad that we as a group of heart moms are so misunderstood. I have one more thing...Micah's own cardiologist told me at one point that I was just worrying too much and that he was just fine...hmmm...that was one month before he stopped eating/started to starve himself...he was in congestive heart failure and had we stayed with that doctor, he may not be here with us today. He was a very sick little boy and thankfully, we had a very strong pediatrician who fought for him...we as heart parents have to fight for our kids and follow what we know to be true in our hearts...we KNOW when things are not right and being told that we should just deal with it certainly is not helpful or supportive.
Much love my dear friend!!!!
Samantha
Alright now, as adorable as you and Dan both are; I was dying for a teensy Eli fix and wanting to get a peek at some nibbly baby flesh. Whip that camera out and hook me up with some new pics of the juicy man!!! You need to come skiing next weekend and let me keep your little man for you!
xoxo
Auntie Lissa
Oops, I commented under the wrong blog post. I meant to post here but instead I commented on Tuesday's entry. Sorry about that.
Amy
I don't have any others to compare Connor to, but I'd have to say that after the initial shock and heart ache, I probably worry about him the same amount as other parents worry about their kids-- just in different ways. They worry about their kids growing up to be drug addicts or date the wrong people, and I worry about whether or not mine will grow up at all.
I think I got to a point where I decided that if I spent all of my time thinking about it, I was going to go insane. It's not that I don't worry about him, it's more that I had to shelve most of those fears so that I could function. I take them out and dust them off every once in a while, but I try not to dwell on them. We kind of take it one day at a time around here.
We do have feeding issues, and Connor will be getting a g-tube sometime in the near future. His is less because of his heart issues and more because of stubborness, though. He won't eat for anyone besides his dad and I, he's on a mostly liquid diet anyway due to some neurological issues, and every time he gets sick he won't eat all together-- not a good situation for a kid who has no fat reserves. We content ourselves with the thought that g-tubes are temporary and if he becomes a better eater in the future they can remove it.
This is rapidly becoming less of a comment and more of a narrative, so I'll shut up now. :)
~Jess
I too have 2 older healthy kids, as a pediatric nurse, of course i worried about the little and bigs things. And while some may find me over cautious, it didn't matter to me. I've seen how little things can turn into bigs things- quickly, especially in small children.
I've always tried to be the best parent and child advocate possible. If a mom says something is not right, even if she can't put her finger on it- then something is not right. Young children, while they are resilient they can also be fragile, ESPECIALLY when you add a medical diagnosis to them, in our case CHD. You can never be over cautious. You have to stay on top of things.
You are a wonderful mother Megan. Along with all the other heart mommies that have posted: Kudos to you!
Heartfelt hugs!
Ana
Post a Comment